On A Life Less Perfect

A World of Special Needs

2012-03-05T11:58:00.001-05:00

When my son Nicholas was diagnosed with Prader Willi Syndrome, I was afraid.

I was afraid of the future, afraid of my son and his illness, afraid I would not be able to survive this overwhelming new lifestyle.

In an effort to understand this fear, I started to write. The words became my medicine, a way for me to diffuse this crippling fear, a way for me to fight back. I used these words to help me find my inner strength.

I shared these personal stories with PWSAUSA, our national organization.

Some of my stories appeared in our newsletter called the Gathered View.

It was here that I found I was not alone. There were many parents who felt similarly. It was this camaraderie, this sharing of thoughts and ideas, that helped me to feel empowered. These precious relationships gave me the courage to face the overwhelming hardships of raising a child diagnosed with a life threatening disease.

The Gathered View is distributed throughout the country and the world. Soon, I heard from folks in California who like me, knew these hardships and understood these fearful feelings. I began to realize that by sharing my pain, I was helping others. I was connecting with individuals from clear across the country.

Eventually folks from England, Hungary, Australia and most recently, South Africa, have asked permission to share my stories. I am humbled,

And suddenly, realize that my personal struggles are not that different from the struggles of parents from not only this country but from all over the world.

With the creation of my blog, this feeling of global connectedness has increased even more.

I no longer feel so all alone.

The world feels somehow smaller.

This pain, this fear, this struggle to raise my unique children, has helped me to connect with people from different states, cultures and countries. It has helped me to understand them better. It has helped me to develop friendships with folks whom I will never meet.

It has helped me to find peace in this world.

I am thankful to both of my children for opening my eyes and bringing the world to me.

Can you see the Deer in this Photo?

2012-03-04T17:26:00.000-05:00

How about now?

A closer look?

This is a photo I took out of our family room window. Muffy started barking furiously and the brave deer bolted into the woods. There are 10 acres of undeveloped woodland behind our home.The land is owned by a 90 year old man who is unable to build on it. The parcel of land is surrounded by neighborhood homes. He has not figured out a way to get a road into his property. Yet, anyway.

So far, we are very fortunate to have nature at our back door. We have had our share of woodland visitors over the years: skunk, grey fox, coyote, fisher cat, wild turkey, owl, and hawk. Not to mention many species of birds, mice and even a few bats!

The boys played outside in the last slushy remains of the snow. Here's what happens when Dad helps make a snowman.

A six-foot giant frozen man, with a bucket on his head.

More March 1

2012-03-01T15:59:00.001-05:00

Home from school and ready to play in the snow

Nicholas on the small sledding hill in our back yard

Weston joins the fun

Sled preparations

Come on Mom, stop taking my picture!

More tolerant of "Mom the pain", and ready to help Dad shovel

This is what Nicholas calls his "Umizoomi" car, you may remember it from the summer?

To refresh your memory......in case you have forgotten.

Funny how you never know which toy your children will covet!

We have had this mini vehicle for about 10 years!

For some strange reason, this little yellow car has earned a lot of mileage!

Perhaps we should consider purchasing some all season radials?

March 1

2012-03-01T09:59:00.000-05:00

It is the first day of March and the first significant winter snowfall for the New England area.

A very unusual occurrence.....

It is not a nor'easter and only a few inches of snow is expected to fall, not exactly a whopper of a storm.

The boys have had no snow days this year! Boots, hats, snow pants and gloves have not been touched for much of the winter. Ski areas and sledding hills, deserted.

Our town will rarely call off school unless we are expected to receive a foot or more of snow. Today was no different and the boys were disappointed that they had to go to school.

They have their snow gear ready however, and are anxious to get home and play in the heavy, wet white stuff.

Nicholas ready to go.

Looking For a Fix

2012-02-28T07:32:00.000-05:00

I used to think that the two worst words for a parent of a child with special needs to hear were...

"Prior Authorization"

Lately, I have discovered a more loathsome word pairing.....

"Drug Shortage"

In the past 6 months, I have called and visited more pharmacies and doctor's offices than a drug rep from Pfizer.

I am the mother of a child diagnosed with severe ADHD.

I have searched the Internet, the neighborhood and the state for the last remaining handfuls of Ritalin.

Since ADHD medications are narcotics, Massachusetts law requires me to physically pick up a presctiption each month from our pediatrician. Phoning or faxing presctiptions to the pharmacy is not allowed.

With all supplies of Ritalin on back order, only a few pharmacies have any in stock. Those who do have it available, have only a few dosage strengths left. As a result, I must first find a pharmacy that has meds available and then visit with our primary care doctor again so he can rewrite prescription after prescription for the "most available" dosage.

I am in his office so often, his staff is beginning to think I am a hypochondriac.

I have frequented so many pharmacies, my photo is on their list of potential drug abusers.

I feel like a crack addict.

But my efforts have been futile and it is my child who is suffering.

I am overwhelmingly aware that many folks do not recognize ADHD as a real disorder. Current dogma persuasively perpetuates the belief that ADHD is nothing more than a label used by lazy and delinquent parents to disguise what is just the end result of poor parenting.

Instead of providing my child with dangerous medications, all I really need to do is cut out sugar and dyes from his diet, add vitamins and fish oils, outlaw video games, employ stricter punishment tactics and my son would be miraculously cured.

It is surprising to me, how this distorted philosophy is so often regurgitated by those who do not have children diagnosed with this condition.

ADHD is a real disorder.

I have seen firsthand what it can do to a child.

It is not caused by parental failure or an inherent "badness" in a child.

It is caused by a brain that is not functioning properly.

It is inherited.

And it is indeed real.

My son has struggled to be successful in school. His restless energy and lack of impulse control have effected his ability to maintain friendships and build long lasting relationships. He is judged, scorned, disciplined and outcast by the world.

Students, teachers, administrators, and parents alike, often do not embrace Weston's unique personality. He is not valued. He is not understood. A steady stream of punishment and negative feedback has transformed my once happy and carefree spirit into a sullen and moody pre-teen who questions his worth in the world.

My son's meds have saved his life.

They have enabled him to learn, to succeed and to live happily in this world.

I have witnessed this successful transformation and the overwhelming positive results of what an appropriate medication treatment can do for a child who struggles from mental health issues.

Denying him treatment, is to me, nothing short of child abuse, no worse than a parent who denies their child treatment for cancer or diabetes.

And so, as his mother, I continue to search for answers.

Why are medications that will help my son being withheld?

Ask the drug companies and they will tell you that in an effort to control illegal distribution of ADHD meds (to college students and the like) the Drug Enforcement Agency (DEA) sets a "quota" for distribution. Once the yearly quota is met, no more meds are distributed, regardless of pulic demand

The DEA will tell you that they need to set these quotas to control the illegal distribution and misuse of ADHD medications. They blame drug companies for convincing physicians to unnecessarily prescribe these substances thereby inflating their markets and increasing their profits.

President Obama will tell you he has asked the FDA to look into it and has worked with Congress to sign legislation to prevent this issue.

Ask the FDA and they will tell you they do everything "within their legal authority" to prevent drug shortages.

ADHD experts like Dr Russell Barkley and Dr. Ed Hallowell will tell you that ADHD is actually under diagnosed in this country with many children and adults suffering from the effects of untreated illness.

They will tell you that currently there is no blood test or brain scan tool to use as a means of diagnosing this disorder. The only way to determine if a child (or adult) has ADHD is to treat them with medication. If medications work, the patient has ADHD. Predicting a yearly quota of just who and how many will seek treatment is an unrealistic expectation.

Does this all sound like madness to you?

Are parents of children diagnosed with ADHD and cramming college students really our biggest drug threat?

All these departments, companies, and federal agencies are talking, but no one is telling me anything.

In the meantime, my child has not received the medication he deserves to treat his illness.

How can this happen?

What would public outcry look like if supplies of insulin were withheld?

And what do you suppose is going to happen once medications are available? The fear of stockpiling now becomes a reality.

I was told that all supplies would be back to normal by the first of the year.

It is now almost March, and I still cannot find the appropriate "prescribed" medication for my child.

I am beginning to consider using these "illegal" distribution channels and perhaps even a few college campuses.

Of course I can just see the headlines now.....

"Special Needs Mother Wanders Streets of Boston Looking for a Fix"

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Visit me today at....Hopeful Parents. Click here.

Forget Holland, Welcome to the Land of the Lost

2012-02-25T15:39:00.001-05:00

If you are the parent of a child with special needs, you are no doubt familiar with the essay “Welcome to Holland” by Emily Perl Kingsley.

It is a beautiful piece that attempts to describe the experience of raising a child with special needs.

It compares special needs parenting to preparing for a vacation in Italy but instead arriving in Holland. The author explains that although Holland is not the expected destination, it becomes a beautiful place to live none the less. (Click here to read)

While I love the beautifully written piece and found much comfort in reading it, my experience raising children with special needs has been somewhat more...shall we say....intense.

My holiday excursion did not land me in Italy, or Holland, or Paris, France for that matter.

Instead, I ended up here.

I was abruptly transported to “The Land of the Lost," a 1970’s television adventure series where Rick Marshall and his two children Will and Holly experience an earthquake of epic proportions that sends their tiny raft over a 1,000 ft waterfall and into an alternate universe filled with dangerous creatures and mysterious technology.

Like the Marshalls, I too am trying to find my way home.

Not because there is no beauty.

On the contrary, like Holland, the prehistoric environment is beautiful, the adventures exhilarating and interesting…..

It is just that I am so darn tired of running away from dinosaurs and Sleestaks all of the time.

Band Aids and Eco Lips to the Rescue

2012-02-23T15:13:00.000-05:00

When Prader Willi Syndrome is discussed, most folks immediately think of the uncontrollable food seeking aspects of the disorder.

What is less known about the syndrome, but equally concerning is the obsessive skin picking behavior that also accompanies PWS.

We have been very fortunate. Nicholas is 10-years-old and not food seeking yet. His interest in food has gradually increased over time. At this point, he is interested in knowing when it is time for lunch, dinner or snack but has not started to sneak food. We have locked our pantry where we keep most of our food and snacks. So far, we have not had to lock our refrigerator or remove food from our counter tops.

We are very lucky! I know!

We are ready to become more vigilant about food when necessary.

We hope for the best but prepare ourselves for the worst.

Picking however, is another story.

According to PWS Behavioral experts, Dr Linda Gourash and Dr Janice Forster, this behavior, much like the satiety issues is caused by a failure to inhibit bodily impulses. Areas of concern include:

arms, face, scalp
lips, nose, nasal septum
cuticles
toenails, teeth
and in severe instances, rectum

No specific treatment has been uniformly effective. Since the activity usually occurs secretly, behavioral interventions are difficult to implement. A basic behavioral treatment principle is that no attention, positive or negative is given to the individual. This helps in preventing escalation of the unwanted behavior. Redirection and involvement in other satisfying activities is helpful.

According to Gourash and Forster, the behavior appears to be "obsessional" but not obsessive-compulsive in nature. Boredom and anxiety are usually the triggers. Medications targeting OCD or anxiety have not been specifically helpful. Although, Topiramate in low doses has been effective for some.

Nicholas has started to pick at his lips and fingers, pulling at his cuticles or tiny pieces of skin, until they start to bleed. So far, these have been the only areas of concern on his body.

Our current plan of attack????

For his fingers.....Band aids!

And lots of them!

We put them on in the morning.
We put them on before school.
We put them on after bath.
I have given the school several boxes to use during class time.
The clerks at CVS are starting to look at me funny!
Yes, band aids have become a way of life around here.

In fact, we purchase so many, I am thinking of buying stock in Johnson and Johnson!

For us, the picking seems to occur when he is bored. So far, the band aids have been effective at stopping it. We also keep his finger nails cut very short.

"Out of sight, out of mind" seems to be the helpful philosophy as well as keeping his hands engaged in another activity. We use the heavy-duty fabric band aids since he can easily remove the flimsy plastic ones. I would find them stuck to the couch or placed carefully on several of his beloved stuffed animals.

While I am up to my ears in band aids, Nicholas, on the other hand is as happy as a clam since band aids hold a special place in his heart, right next to fireplaces, candles, backpacks and garage door openers.

To prevent Nicholas from picking his lips, I found a great product called Eco Lips Lip Care Kit. It is a small kit that consists of lip balm and a variety of carrying devices, necklaces, clips and belt fasteners.

Nicholas prefers the necklace and wears it around his neck. When he has the urge to pick at his lips, he uses the lip balm instead. So far, it works great. The cost for this product is about $20 and may be available in other stores. To visit the Eco Lips store click here.

For those of you also raising a child with skin picking issues:

Posted below is "A Program to Address Typical Skin Picking"
This was developed by the Pittsburgh Partnership.

We have found many of these techniques helpful.

My Confused Cactus

2012-02-22T11:35:00.000-05:00

This is my Christmas Cactus. I have had it for many years.

This is astounding to me since I usually forget to water any kind of indoor plant and usually end up killing them. But for some reason, this one has survived. Perhaps because it is a cactus and requires very little water? Hmmmmmm?

Anyway....this cactus blooms twice a year, Christmas and spring.

It is February 22, and I think like the rest of us, my plant is confused.

Is this winter or just a very long spring?

Then and Now

2012-02-21T08:17:00.000-05:00

This was last year...brrrrr.

This is this year.....

It was so lovely this weekend, we went to the beach!!!!

For New Englanders, that just doesn't happen in February?

Last year was one of the toughest winters I can ever recall.

It was bitterly cold.

We had mounds of snow.

We averaged one major snowstorm every week.

This year however, it is quite a different story. This has been one of the mildest winters I can ever recall.

It has been warm and sunny. A weatherless winter with no precipitation of any kind, not even rain!

Weston searching for treasure at the beach.

And although it has been somewhat chilly, it has been mostly bright and sunny.

This is Lynch Park, a park, garden, playground and beach recreation area. Yesterday, Pete, Weston Nicholas and I spent the day beach combing and playing in the sand. It was a fun and unusual day for February!

Here's what the park looks like in summer...

January and February are typically the snowiest months of the year here.

But this year, we have not had a single storm.

Frankly, after the brutal winter last year, I am not complaining.

The boys, on the other hand, are very disappointed, since they both love to play in the snow.

Although, it was Mark Twain who once said, if you don't like the weather in New England...
just wait a minute!

The Advocate and the IEP

2012-02-19T09:47:00.001-05:00

Well, our IEP is finally over, phew!

You remember our advocate, the pit bull?

Well, during the meeting she behaved more like a pussycat!

She has been an advocate for many years, as well as a mother to a child with special needs herself. She was impressive.

She has done this for so long and for so many children, she was able to easily identify what the IEP lacked and what services Nicholas required. The school, awed by her overwhelming expertise, readily agreed to any and all of her suggestions.

One of her suggestions was for the school to implement a "discrete trial" academic approach to teaching Nicholas. This is a behaviorally-based style of one-on-one teaching that uses prompting, cues and repetition to help children with anxiety/behavioral issues to learn. The teacher will keep a record of what the child has learned. This "data" is then collected and reviewed and is a handy tool for measuring a child's learning progress.

For children diagnosed with Prader Willi Syndrome, using repetition as a technique for learning is a good one since our children are easily distracted and tire quickly. It also adresses any behavioral issues that may cause anxiety and impede a child's ability to sit, listen and learn.

Discrete Trial Training (DTT) is often used in combination with Applied Behavioral Analysis Therapy (ABA) and is often used to teach children diagnosed with autism. I will be posting more on this next week for those of you interested in learning more.

We have not however, reviewed all of our evaluation data on Nicholas yet.

Naomi Chedd, our PWS expert, will be providing us with her report. The IEP team will meet again to discuss her findings.

So far, I am pleased.

Our advocate has a plan for Nicholas and it is a good one.

For the first time in my life, I got an opportunity to sit at an IEP meeting and do nothing.

Nicholas easily got all the services he needed.

And there was no blood shed, at least not yet anyways.

It was a very good first step.

For all of you parents out there who also have children diagnosed with special needs, especially PWS, I have one very important piece of advice for you.

Hire an advocate!!!!!

Be sure it is an experienced one with a good reputation.

I wish I had done this years ago. I would have saved myself and my son from a lot of pain and sleepless nights.

Do it!!! You will be glad you did.

So, What Causes Anxiety in Children Diagnosed with Prader Willi Syndrome?

2012-02-16T15:17:00.001-05:00

We know now that Nicholas is suffering from anxiety.

We also know that this anxiety as interfering with his ability to learn, to speak and to behave calmly in the world.

So, what is causing this debilitating issue?

And more importantly, how do we treat it?

These answers are not so easy to find.

Is his anxiety caused by his physical disability? Is he wired to be anxious?

Is it behavioral, caused by certain stresses in his environment?

Is it hormonal, as his body is starting to mature? Is there some hormone inside his body that is lacking, or perhaps too much of another hormone that causes him to feel stressed? Does his growth hormone need to be increased?

Is it food related? Is the thought of food becoming so distracting, it is causing him to be anxious all day?

Or is it perhaps, all of the above?

And when do we as parents consider medication as a treatment for this condition?

As Nicholas and I journey from one specialist to the next, in an effort to unravel this mystery, it appears at least to me, that it is all of the above. Nicholas is plagued with many, many issues that predispose him to anxiety. My job as his parent is to address each one.

But where do I begin?
Is it a physician we need, a psychologist, a psychiatrist, an endocrinologist, a neurologist, a PWS expert, a developmental pediatrician, or a special needs advocate?

Do we need medication, behavior plans, locks, hormones...or voodoo magic?

The answer for us, has been....again...all of the above.

Except the voodoo of course...although I wouldn't rule it out if I honestly thought it would help!

We started where Nicholas's anxiety was the worst....school. He suffers from issues like: lack of academic progress, speech dysfluency, behavioral issues, skin/lip picking and a lack of writing skills to name just a few. Our latest Neuropsych report indicates a significant drop in IQ.

So, we hired a PWS educational consultant named, Naomi Chedd and a special needs advocate/attorney to help us sort through the issues. We are hopeful that by addressing these issues first, we will see an overall improvement in Nicholas.

Once school issues are resolved, it is off to a developmental pediatrician who was referred to us by our new Geneticist. This physician will review all of our test results and the latest accommodations we have made. They will review the data, and Nick's demeanor to determine if his anxiety has improved. If it has not improved, they have the ability to prescribe medication. This, however, is a last resort for us, since both his Neurologist and Geneticist believe Nicholas has a very laid back demeanor and medicating him right now may actually cause him more harm than good.

So, our first step is the IEP today!

As an added note, it has also been a very intense few months for me. The appointments and professional discussions have my head spinning. Since I am the caretaker for both of my children, I need to slow my pace so my overall health (as well as my mental health) does not suffer.

I do honestly believe my son is like a mirror, he reflects the energy of the individual nearest to him. I have found that folks with strict, narrow and inflexible energy have an immediate negative effect on Nicholas. He responds more appropriately to calm, nurturing and flexible spirits.

I am thinking of taking a "just me" weekend, a time for me to relax and calm my restless spirit. What good is treating Nick's anxiety if I too am a source of his stress?

This looks pretty relaxing to me, don't ya think?

A "time-out" for Mummy.

A Pitbull for Nicholas

2012-02-10T09:19:00.000-05:00

We have hired a special needs advocate for Nicholas.

She is aggressive.

She is tough.

She likes to fight.

I think she just may have been a pitbull in another life.

After receiving the results of all Nicholas's recent testing, it is clear to me and Pete that our son has regressed. We have come to the conclusion that the public school may not be providing Nicholas with the level of tools, education and therapy services that he needs to be successful.

If it were up to Pete, we would have done this long ago. I, on the other hand, did not want to separate my son from the world, a world he will ultimately need to negotiate when he is an adult.

Now, however, we find ourselves at a crossroads, and we must decide what is best for Nicholas. If Nicholas is to negotiate his way in the world, he will first need the appropriate skills to do it. He is not acquiring those important skills.

For many years, I have worked tirelessly with the school, negotiating and educating. I'm tired.

In our next IEP meeting, we will review an abundance of data from therapists, teachers and physicians.

I do not have the expertise or the understanding of special education laws to negotiate for Nicholas effectively.

We need a professional.

We met with the advocate last week. She is...in a word...aggressive. Many schools are petrified of her. After meeting her, I understand why.

Her manner is blunt, uncensored, and in-your-face. She will cut you off and cut you down, without hesitation. She goes directly for the jugular. It is an approach that is very different from my own. I worked for many years in the working world as a team-player, a professional, mindful of my co-workers and adversaries. She is not and I find myself uncomfortable with this approach.

Pete reminds me however, that my "professional approach" is not working and the reason why we are where we are. He argues that this type of abrasiveness is just what we need.

I feel very conflicted but if this woman's ferociousness is what is needed, for my son to be successful, I am willing to be silent and accept what is best for Nicholas.

Our IEP is scheduled for Feb 16.

Will keep y'all posted.

A Play Date, a Strep Throat and More Professionals

2012-02-07T18:41:00.000-05:00

On Saturday, Nicholas had a play date with his friend Ben from school.

They had a ball.

I didn't think I was going to be able to get Nicholas to come back home. Why, you ask?

Well, first of all, they had one of these.....

And then in the bathroom, they had plenty of these......

And finally, Ben's Dad let Nicholas open this........(with the button on the wall)!

Needless to say, Nicholas was a happy camper. He was in OCD heaven! He had a great time exploring Ben's home and playing in the playroom with Ben and his brother.

Unfortunately, however, Nicholas woke up on Monday with a sore throat and a terrible rash on his face. The rash was a collection of tiny red bumps (like sand paper) all over his face. It looked a lot like scarlet fever.

So, of course it was off to see yet another professional, this time our pediatrician. She performed the quick "office version" of the strep test and sure enough, it was positive.

Nicholas has started a 10 day regime of antibiotics, and feels much better already. This is a good thing since we have a few more visits with a few more professionals this week. What else is new....right?

Tomorrow, we are visiting with Naomi Chedd, a PWS expert and educational consultant who we hope will be able to shed more light on the cause of Nicholas's recent anxiety issues at school.

We are also meeting with Dr. Jonathan Picker at Children's Hospital. He is a Geneticist who has some psychiatric training and works with children with developmental delays to help address any medical or psychological concerns. He specializes in children diagnosed with Fragile X where he sees many patients with similar anxiety concerns.

I am hoping he can help us to sort out what is contributing to Nicholas's anxiety. Is it a physical issue, a behavioral issue, a cognitive issue, a food issue, a hormonal issue or all of the above? And more importantly do we need to treat the anxiety medicinally or do we need to try other options first?

I will keep you all posted on the results of these interesting new visits.

In true Nicholas fashion, despite his strep throat, and his many visits to the doctor,

He is still his same lovable self!

Tom Brady and Me, How the New England Quarterback is a lot like a Parent of a Child with Special Needs

2012-02-04T10:49:00.001-05:00

For those of you living on the moon,

Tom Brady is the Quarterback of the New England Patriots.

On Sunday, he will play one of the most important games of his life.

And while I am, of course, a Bostonian, and a lover of all of our sports teams, to me Tom Brady is something more.

To me, he is a lot like the parent of a child with special needs.

Let me explain.

When folks gather round to talk about the greatest QB in NFL history, it is not unusual to hear names like Brett Favre, Dan Marino, John Elway, Johnny Unitas, Joe Montana, and Peyton Manning.

There is no mention of Tom Brady.

And yet in terms of winning percentages, Tom Brady has 124 wins in just 161 games. That is a staggering percentage of 77% - and the best by far in NFL history.

To give you some idea of how great that accomplishment is - the second highest winning percentage goes to Peyton Manning - with a winning percentage of 67.8!

As impressive as that may be for a regular season, Brady has nearly the same winning percentage in the postseason (playoffs) - again at a staggering 76 percent. For his career, Brady is 16-5 in the playoffs which ties Joe Montana for the most postseason wins by a starting QB.

That is some kind of consistency.

The Patriots have been in the playoffs all but two of his 11 seasons as starter, in one of those seasons he was hurt and did not play.

Tom Brady has won more Super Bowls than Favre, Unitas and Marino combined!

This will be Tom Brady's fifth Super Bowl as a starting quarterback, which will tie John Elway for the most starts in the "Big Game".

Not too shabby a performance for the 199th pick in the 6th round of the 2000 NFL draft!

And yet, he is rarely mentioned in discussions of quarterback greatness.

Why?

To me, he is like a parent of a special needs child, he is invisible.

He stands right in front of us day after day, getting the job done (in spectacular fashion) and yet he goes unnoticed.

He leads his team, (his family) with quiet and humble determination.

He ignores thoughtless and ignorant comments.

He is honest, admitting when he's had an off-day.

He does not seek the spotlight, instead he supports and encourages others.

He works hard every single day, setting a good example and focusing on the little things that will get his team into the end zone.

He does not play for fame or fortune.
(He converted $5.28 million of his 2007 base salary into a signing bonus that was spread out over the remaining portion of his contract so that it could free up cap room to absorb Randy Moss' incoming contract.) What athlete does things like this for others?

He works hard to see his beloved team succeed, to get them to where they all deserve to be.

Oh, and not to mention:

Tom Brady will be heading up "Team Tom Brady" in the Best Buddies Challenge: Hyannisport, MA on June 2, 2012, to raise funds and awareness for Best Buddies, a charity dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership development for people with intellectual and developmental disabilities. (http://www.bestbuddies.org/).

And so, it is Tom Brady's quiet greatness that reminds me of all of us parents who have children diagnosed with special needs.

If you were to ask Tom Brady how he feels about his invisibility, his lack of colorfulness, his under-recognized "superstar" status.....like a parent of a child with special needs, he would probably tell you that he prefers it this way.

And so, in honor of Tom Brady and all of my fellow special needs parents....

GO PATRIOTS!!!

Good Luck at Super Bowl XLVI!

I can't think of a more deserving man!

You Down with OPP?

2012-01-31T10:44:00.000-05:00

Many of you may be familiar with this popular rap song.

But for those of us living in the world of special needs, OPP does not reference "other person's privates".

More appropriately, it is an acronym for "Over Professionalized Person"!

And we are down with it.

Let me explain,

My son Nicholas has been evaluated by professionals, lots and lots of professionals.

Nicholas had been diagnosed with many "issues" related to his Prader Willi Syndrome. And for each "issue" it seems like there is no shortage of professionals to treat it. We have found many experts who are all eager to help, in most cases, at the cost of well over $100 per hour. Many of these specialists are not covered by insurance. We have seen advocates, attorneys, psychologists and psychiatrists, neurologists, endocrinologists, OT/PT therapists, geneticists, developmental pediatricians and behavior specialists. All there to help, all with a different opinion for Nicholas and his treatment options.

I have discovered that one of my most important jobs in caring for Nicholas, is to balance this schedule. To find the right professionals, only the ones who are needed most to ensure his healthy life. I must resist the temptation (by myself or the school) to add yet another professional to our long, growing list of specialists.

As a parent of a child diagnosed with Prader Willi Syndrome it is my job to ensure my son does not become an Over Professionalized Person. That his life does not become solely a routine of endless appointments.

But this is not so easy.

Nicholas's IEP is scheduled for February.

In the last few months, Nicholas has experienced regression. He is stuttering and struggling with speech fluency. He has lost sight words and struggles to read and write. His anxiety is escalating. He is having behavioral outbursts at school when transitioning to art, music, computers, library and morning meetings.

So, what is causing all this?

In an effort to prepare for his IEP and answer this important question, Nicholas has been evaluated by (you guessed it) more professionals!

But this is a very critical time for Nicholas. This meeting will determine what we need to do to provide the right educational environment for him. This meeting will determine his future. It is important.

I am anxious to find the right professionals to help.

I am ready to fight for my son.

But when this is all over.........no more professionals.......at least for a while!

I am down with OPP!

The Little Red-Haired Girl

2012-01-25T09:40:00.001-05:00

Nicholas has his first crush.

Her name is Fiona.

She is a little red-haired girl.

Much like Charlie Brown, he has admired her from afar.

That is, until today.

As I mentioned in a previous post, there is a group of 4th and 5th grade children that like to care for Nicholas. They sit with him at lunch, they play with him at recess and they visit with him in the morning before school begins.

Most of these children do their best to continue to hang with Nicholas during recess, but it is difficult for them sometimes (and understandably so). Many of them like to play kick ball or climb the monkey bars, activities that are difficult for Nicholas to keep up. So very often, the kids leave Nicholas alone to play by himself, that is except for one....the little red-haired girl.

Fiona has a heart made out of gold. She is a kind, sweet, loving, pretty little girl who cannot stand to break poor Nicholas's heart, not even for a second. Often, she will stay behind to play with Nick, even though she would really like to run off and play with her friends.

Nicholas is aware of the sacrifice she makes for him, saying things like,

"Mummy, today Fiona stayed to play with me at recess. She is very good to me isn't she?"

"Yes, Nicholas, I say, "she is a very good friend."

"I love her," he'll say smiling sweetly to himself.

While we stopped at the drug store yesterday, Nicholas saw a lovely girl's necklace and asked me if he could buy it for Fiona.

"Mum, look!" he said, "Can I buy this and give it to Fiona? She is so good to me."

How could I resist?

I have never seen Nicholas move as fast as he did today in all my life. He was anxious to get to school so he could give "the love of his life" her present.

"Mummy, I can't wait to give Fiona her necklace."

"Me too Nicholas," I said, "I am sure she will be very happy."

"I love her Mummy."

"I know."

Resilience

2012-01-24T19:21:00.001-05:00

Pete is feeling better, his body is on the mend.

He met with Dr B, his hand specialist in Boston today. The doctor was shocked by Pete's amazing capacity to heal. It has been only 3 days since his surgery. His finger was so improved, she asked if she could take some photos to document his speedy recovery.

With his finger so well healed, the good doctor gave him her blessing to return to work next week, light duty only. She was happy to put Pete back to work as he begged her to do, but she warned him that if he doesn't take it easy and he returns with a re-injury to the finger, she will make him stay home for 2 months!

I think Pete got the message.

The orthopedist doctor made him a special hard plastic device that he can wear over his finger to protect it from injury.

We have taken some much needed rest together as a family...and we all feel much better.

As a family entrenched in the life of parenting children diagnosed with special needs, sometimes there are gifts in the rubble. And one of them, I believe is resilience, the ability to persevere, to support each other through the difficult times and come out on the other side feeling somehow stronger and more appreciative of one another.

We are meeting this week with a geneticist/psychiatrist who believes he can help us in our next step in treating Nicholas. We are also meeting with a special needs attorney/advocate who will advise us and hopefully accompany us on our upcoming IEP meeting with the school.

I cannot explain it, but I feel somehow rejuvenated and ready to move ahead in a positive direction for our family.

I would like to thank all of you for your well wishes, your prayers and your support. Your words comforted us, your prayers were like medicine.....we are truly blessed.

Thank you.

To my brave husband, I dedicate this poem to you...

Invictus
by William Ernest Henley (1849 – 1903)

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

A Serious Injury to Pete's Hand

2012-01-22T14:01:00.000-05:00

I do not know where to begin.

For those of you uncomfortable with discussions about serious injuries, please do not read any further!

My strong, supportive husband has sustained a serious injury to his left hand, specifically his finger. It was a wound so severe that the top digit of his middle finger required amputation.

I can hardly breath as I write this.

Ironically, he did NOT experience this accident at work where he is around heavy machinery all day long, he did it while he was at home. He was removing a ladder from inside his work van when he slipped while he was backing out. As he fell, he hooked his finger on a shelf inside his van. Thankfully, he was wearing gloves or the injury may have been worse.

This gets worse, so if you have a weak stomach please stop reading!

The children and I were not at home.

He removed his glove only to find the tip of his finger had detached, leaving an exposed bone. The detached portion of his finger was still in his glove. He cleaned the wound, wrapped it (and his finger tip) in a towel and called me. I was driving home from an appointment with the boys and not far away. I told him to call 911 but he refused and waited for me. Men!

He was unusually calm, in shock, I think, as we transported him to the nearest hospital. He was so calm about the wound that the hospital staff did not realize the extent and seriousness of the injury. I had to intervene.

He was seen immediately by a doctor and soon after an orthopedic specialist who arrived at Pete's bedside wearing galoshes. He had long hair and glasses and although he was an incredibly decent man he looked about 20 years old.

He explained that the finger was unsavable. He could remove the top portion of his finger bone, stitch it up and Pete could be on his way.

While Pete was ready to "get it done and over with" I was not.

Pete is a mechanic. Use of his hands is critical to his livelihood and ability to perform his job. I wanted another opinion and a Boston hand specialist to at least evaluate the wound and perform the surgery. The nurse agreed shaking her head vigorously up and down silently affirming my suggestion to Pete. After much hesitation he finally agreed.

It is now 6 pm. Both boys are hungry, upset and bouncing off the walls. I need to get them home. Pete needs to get to Boston.

The ambulance arrives to transport Pete to Beth Israel Deaconess Medical Center in Boston, another teaching hospital of Harvard University. I am sad that I cannot accompany him but both children are visibly upset by this entire ordeal.

Pete rides off to Boston chit chatting with the ambulance staff since they have given him a rather strong pain medication and he is feeling friendly. The entire hospital staff was in complete disbelief at how calm Pete had remained throughout the traumatic experience. He explained to them that having a child diagnosed with complex medical issues had thoroughly prepared him for such an event...and if it is possible, I fall even more in love with him.

The hand specialists are waiting in Boston for Pete to arrive. Many of the residents and fellows are visibly shaken by what they see. (Keep in mind, this is a trauma center...so it should give you an idea as to the extent of Pete's finger injury). They call his injury a de-gloving. (gross, I know).

The hand specialist is a strong confident woman maybe 5 feet tall. They discuss Pete's options and both agree that there is extensive nerve damage to the tip of his finger. She may be able to save his finger tip but he most likely would have no feeling to the top of his digit. In Pete's line of work, this could be a serious hindrance to his ability to perform his job safely. She does however, suggest they try to save his top knuckle and use it as a type of replacement finger tip. It is getting late, so they decide to perform the amputation the following morning.

Now, here in New England, we have not received a significant snow fall for the entire winter, but wouldn't you know, the next morning it was snowing with periods of sleet and freezing rain. Driving conditions were treacherous but I needed to get to Boston (a 30 mile, traffic-congested drive). I suggest to the boys that they stay with a friend of mine. But both of them are adamant, they want to see their daddy.

Pete has his surgery at 7 am while I try to make some travel arrangements to get to him.

In one of my more creative-thinking moments, I called a transportation company called Boston Chauffeur and hire a driver (in a Lincoln town car) to take us to town to pick up Pete.

Weston nearly dropped his teeth as the luxury sedan pulled into our driveway. Both boys sat unusually quiet in the back seat as they enjoyed the smooth, quiet ride. Richard, our driver, was like an angel sent from God to comfort us and drive us safely through dangerous conditions to rescue the brave Pete.

We pick up our patient who is hungry, tired and anxious to get home.

Richard drives us home safely.

We all try to rest but we are overwhelmed by emotion and fatigue.

Today, Pete is resting comfortably but anxious to get back to his old self.

Pete is an incredibally strong and conscientious man. Just one of the reasons why I married this special soul.

In true Pete fashion, he is trying to ignore the fact that he has just sustained a traumatic injury and partial loss of his finger. He simply wishes to carry on.

I am so fortunate to have this kind, strong and brave man in my life. He is our family rock. I would be lost without him.

I must admit I am emotionally shaken up by this experience.

It has been a rough few months for us as a family and we are in need of some rest and rejuvenation.

We need to re-center and find our peace.

Please say a few prayers for a speedy recovery for Pete.

He is a brave and special man.

The Debilitating Effects of Anxiety on Learning in Prader Willi Syndrome

2012-01-19T13:32:00.001-05:00

Sorry it has taken me so long to review the results of Nicholas's EEG with all of you. I wanted to take my time in writing this post so that I could clearly communicate this message. I believe that anxiety is a very important issue to understand for all parents of children diagnosed with PWS.

I believe that chronic anxiety is a physical condition that is overwhelmingly misunderstood in this society.

It is an ailment that can effect every moment of every day for the individual who suffers from it. It is the robber of happiness, the thief of normalcy and the harbinger of paralysing fear.

It can effect things as important to a child as his ability to learn. Fear and nervousness can effect their ability to relax and enjoy all that the world has to offer.

My grandfather was so paralysed by the crippling effects of anxiety, that he eventually could not leave his home and struggled to support his family. He suffered from agoraphobia, a severe form of anxiety.

But for some reason, I had forgotten all this.

As I have mentioned in previous posts, Nicholas has begun to develop some unusual issues. Specifically, some motor tics, cognitive regression, stuttering and speech dysfluency, early morning awakenings as well as some behavioral meltdowns at school. Incorrectly, I assumed that these issues were related to his ESES, a rare form of epilepsy.

I was wrong.

It only took an overnight EEG at Children's Hospital and a few savvy Neurologists to open my eyes.

Nicholas's overnight EEG was completely clear with no recorded spikes whatsoever. His epilepsy medication is effectively treating his condition. He is also maturing. The doctor's explained to me that most individuals seem to outgrow ESES and are symptom free by the time they are 12-years-old. But despite this happy news, I was still worried.

"What then, is causing Nick's regression?" I asked.

Having watched Nicholas become so upset by the EEG process, the astute Neurologists explained to me that chronic anxiety is a real disorder, just like PWS. They explained that many individuals diagnosed with PWS are also diagnosed with chronic anxiety. They explained that Nicholas's lack of academic progress and cognitive regression may be caused by anxiety.

"How could that be?" I asked.

Dr. Harini explained that as demands at school increase, Nicholas becomes anxious, and is unable to cope effectively with this increase in stress. Lacking the ability to effectively process these fears, he has a behavioral meltdown thus "escaping" the increased demands. It becomes a vicious circle with the end result being a lack of learning, even regression since he fails to execute these important learning activities. She suggests Nicholas be evaluated by a psychiatrist and a behaviorist.

As I heard her words, it was as if a giant hammer falls upon my head, and suddenly I am awake.

Nick's stuttering and speech dysfluency becomes more pronounced when he is anxious. His eye blinking and muscle twitches, also appear when he is stressed. He wakes at night anxious for breakfast. His behavioral meltdowns have increased at school when demands on him are increased. Like others diagnosed with this condition, his anxiety is beginning to effect him every moment of every day. And suddenly I realize, these doctors are correct.

Dr Harini explained that if Nicholas's anxiety is controlled, his cognition may actually improve. She further explained that most public schools lack the ability to understand anxiety and how to effectively teach those who suffer from this condition. This ignorance further escalates Nick's anxiety, creating a vicious cycle of behavior with the end result being a lack of learning.

I am surprised at her statements. I thought cognitive testing was very accurate and permanent.

I question Dr Takeoka to ensure I am not living in denial about my son and his cognitive status. He explained to me that every winter we notice a general health decline in Nicholas. Since we tested Nicholas during this time of year, it is not surprising to him that his scores may be low. He explained that this is just a snapshot of Nicholas's progress at this moment, and not a final answer for Nicholas and his overall cognitive health. He cautions us that while anxiety medication can help control the effects of anxiety, if mismanaged it can also cause further cognitive regression and must be evaluated carefully.

He agrees with Dr Harini that with the right supports, Nicholas scores can improve.

I am relieved that both doctors agree. I breath a little easier.

Both Neurologists emphasize to me that Nicholas is a very complex child. He suffers from many medical conditions. I must admit sometimes, I forget this. This medical fragility can also make a small problem turn into a monumental one simply because there is so much going on in his little body.

I feel foolish that I assumed Nick's issues were related to his epilepsy. I did not take his medical fragility and his escalating anxiety issues seriously.

I know now what it is I need to do to provide my son with the tools he needs to be successful in school, home and life.

It is time for Nicholas to be evaluated by a child psychiatrist.

It is time to develop an IEP with the school that is behavior-based and works to address the negative behaviors that may be interfering with his ability to learn. It may even be time to consider a new school that is more "behaviorally equipped" to handle Nicholas. I have alot of research to do.

But more importantly, it is time for me to remove the stress, nervousness and anxiety that plagues my young son so that he may enjoy his life, his family, and the world.

Happy Birthday Dear Nicholas

2012-01-18T07:35:00.000-05:00

Today is Nicholas's 10th birthday.

A look at Nicholas through the years.

Happy 10th Birthday to Nicholas!

He has asked to go to his favorite Chinese Restaurant tonight!
We are all pretty happy about that!

The House of Healing

2012-01-15T17:50:00.001-05:00

Nicholas and I have returned from Children's Hospital where his latest EEG was performed. Or as Nick calls it the hos-i-pi-tal.

As usual, I have learned some important things.

Each new adventure with Nicholas, brings me one step closer to understanding his complex needs.

The lessons I learn from these adventures are never what I expect.

But it is with this new information, that I begin to understand what I must do next to help unravel this mystery that is my son.

We head to Children's on Friday afternoon.

After two days of rain and wind, the weather has finally started to clear. As we drive into Boston, we notice a beautiful sight in the sky. The sun's rays find an opening in the thick dark clouds and illuminate the city ahead of us. It is almost as if the brightness has found Children's Hospital, and is shedding some light on what we will find there.

This may sound corny to some of you, but to me it was an important validation from above. I knew somehow this vision had significance.

We survive the harrowing drive through Boston traffic and arrive at the parking garage. Nick's favorite place. We park in our usual spot on the roof.

Nicholas has brought two of his favorite backpacks stuffed with things for him to do during our stay.

We arrive at the admitting office, where a large fish tank is full of fish from the movie, Nemo. There is Marlin, Dory, Gill and Nemo, who all swim happily around the tank calming the anxious patients.

Nicholas finds his favorite toy and waits patiently with Weston and Daddy as I fill out the necessary paperwork.

It isn't long before we are told to head up to the Neurology floor on 9 North. As we arrive, we pass many patient rooms. Each room has a window facing the hallway. On each window is a painting from one of the previous children who inhabited the room. But as we pass these delightful pictures, we are struck by one window in particular...

"Did you see that?" Pete asks me.

"Yeah, I saw it." I answered.

"Another sign?" Pete asks.

"I dunno." I answer, as I am officially in Mummy mode. This is a state of mind I use to block all emotions and concentrate on the job at hand. It is going to be a long night and I need my inner strength.

We arrive at the nurses station where pretty Veronica greets us warmly.

"Hi, is this Nicholas?" she asks and extends her hand to greet the little man.

"Let me show you to your room," she says.

It is, of course, this one...

Pete and I look at each other and smile. We do not speak to each other but silently we know Pete's question has been answered.

We look around the room and see we have a lovely view of the tall building going up next door.

And in the corner is my lovely bed for the evening, complete with two small plastic pillows.

Next, the lovely Lejo, our EEG technician arrives to prep Nicholas for his overnight study. She must apply several leads and wires to Nicholas's head using some tape.

"No air, right?" Nicholas asks as he is very disturbed by the "air tube" they use to dry the glue. This time however, we have cut his hair short so that the technicians can use tape instead of glue.

"No air!" we all answer in unison, hoping to calm Nicholas, who is starting to become visibly anxious.

"I don't want to put the buttons on!" Nick suddenly screams as he starts to unravel emotionally.

Weston, Daddy and I rush to his side, asking him questions and singing songs...anything to calm our nervous child.

Nicholas's face turns red from crying as Lejo finishes up applying the leads on one side of his head.

"Mummy, don't stop singing Pussycat!" Nicholas says while he continues to cry. Pussycat, also known as "What's New Pussycat?" is a 1960's tune sung by Tom Jones, and one of Nicholas's personal favorites. My singing voice is not exactly of high calibre but I sing the song none the less in an effort to calm Nicholas.

"What's new Pussycat, whooooooooooaaaa, What's new Pussycat whoooooooooooaaaa..." I begin. Weston and Daddy join in. Folks walking past our room must have laughed with amusement at the sight of the three of us singing to the screaming child laying on his bed.

"Pussycat, Pussycat I've got flowers and lots of hours to spend with youuuuu..."

"Come on Nicholas, join in, you know the words," I say and suddenly the crying stops as a sobbing voice starts to sing.

"Pussycat, Pussycat I love you, YES I DO!..." Nicholas starts to sing at the top of his lungs and Lejo the technician starts to smile as she watches the once sobbing boy now sing his little heart out.

She works quickly and it isn't long before she is done. She wraps his head like a turban and places a small backpack into a Children's Hospital bag. She tells Nicholas that he can have the bag when he leaves the hospital and he is immediately comforted.

Weston is anxious to help his younger brother and hands him his new turtle pillow pal. My good friend S gave this fluffy friend to Nicholas especially for his hospital visit. (Thank you my dear friend)

It is now about 4 pm. Nicholas is hooked up to his monitor and our EEG study begins.

Weston and Pete head home to beat the rush hour traffic. I order supper for Nicholas. About an hour later his meal is delivered and Nicholas feels like a King. He loves having his food delivered and eating it on a tray. He is happy. The events from earlier this afternoon are forgotten as my son teaches me the meaning of the word, resilient.

As a special treat, we order some vanilla ice cream. He takes his time, savoring every mouthful of the sweet sticky dessert. He is content.

After dinner we play some games and color. We meet Katie our night time nurse. She looks closely at us and says,

"Hey wait a minute, I remember you guys. You have been here before, haven't you?"

I don't know if it is a good thing or a bad thing that we are becoming familiar to the Neurology nurses. She does look familiar to me as well, and I ask her,

"Weren't you recently engaged?"

"Yup, that's me," she says "Only it was about a year and a half ago!"

"You have a good memory," I tell her.

"No," she says, "who could forget Nicholas?"

Before we know it, it is time for bed. Nicholas is exhausted from his busy day. We put on his pj's and he quickly drifts off to sleep.

The physicians at Children's Hospital make their rounds at about 8 pm in the evening. Children's is a teaching hospital and is affiliated with Harvard Medical School. A large group of eager fellows and residents accompany the head Neurologist, Dr. Harini on her visit with each patient.

They are a diverse group of individuals and I am thankful to have the extra brainpower evaluating my son.

I explain to the intelligent group that we are concerned about recent results from Nicholas's Neuropsych evaluation. It seems to indicate that there is some regression in Nicholas's cognitive scores. The school has also informed us of some skill sets that Nicholas has lost. We have noticed some deterioration in his speech and academic progress. I told them that I was hoping that perhaps Nick's EEG may show some increases in his overnight sub clinical brain activity. Perhaps there is some spiking in the areas of his brain that correlate to where we have seen regression.

Our loud discussions have now unfortunately awoken poor Nicholas. The attending physician examines Nicholas, they ask a few polite questions and tell me they will visit with me tomorrow morning to review the results.

Another EEG technician comes in to attach a few more leads before Nicholas drifts off for the night. The leads are on his face. They also attach a pulse ox to his finger to measure some of his vitals while he sleeps. The device glows red on Nicholas's finger and he becomes very distracted by it. He kind of reminds me of the movie, ET.

see the red light on his finger? "ouuuch!"

Nicholas is now alert and restless. He cannot sleep. Our rather good start to our hospital stay has taken a nasty turn. He absolutely will not go to sleep unless I go to bed too. With no other option to calm him, I pull out my bed and gasp, as my new mattress for the evening looks like this....

It is about 2 feet wide and 4 feet long. I am thankful that Pete did not stay the night with Nicholas since he would not fit on this "strip of paper" of a bed.

Nicholas tosses and turns but eventually falls asleep until about 2 in the morning when the custodial staff decided to wax the hallways of the entire 9th floor. The vibrating machine bumped our door and poor Nicholas awoke, frightened by the loud sound. I must admit, I was wondering whose genius idea it was to wax the floor of the sleep lab at night? I resist an urge to assail the poor fellow just doing his job.

Nicholas starts to cry and becomes inconsolable. He hates the light on his finger. His head itches and he misses his bed. I climb into bed with him but it doesn't help. He finally just cries himself to sleep. I head back to my bed and eventually drift off too, struggling not to move least I fall off of my wooden plank.

Nicholas wakes me up at 6 am hungry for breakfast. It is clear that he has been awake for a while and has removed the red light off of his finger. I wash and dress anxious for 6:30 to arrive when I can finally order breakfast for Nicholas. Note to myself...bring extra food next time!

Nicholas and I while away the hours waiting for the medical team to review our results. Weston and Pete arrive to spend the morning waiting with us.

Nicholas entertains himself by visiting his "office" also known as the "Krusty Krab" for any of you SpongeBob fans out there. It is the closet in his room. He passes the time by climbing in and out of the narrow space.

He explores the buttons that move his bed...

He has no trouble entertaining himself. Weston and Pete do not share this skill.

The medical team finally arrives to speak with us. Dr Harini explains that there were no spikes noted in Nicholas's overnight EEG. None!

Now I should be happy with these results, right? Nicholas's ESES is being managed effectively by his medication, and the spikes are starting to resolve as the doctors said they would. But instead, I am confused. Why then are we seeing regression? What is the cause of Nicholas's increase in stuttering? Why the academic loss?

I engage in a long conversation with the head Neurologist as well as with our good friend, Dr Takeoka who stopped by to visit with us last night after a busy day's work. Both Neurologists provide me with their thoughts.

I am astonished at their level of knowledge and the hypothesis they share with me. The strength of their ideas match the strength of their compassion and I feel blessed to live near this hospital. It is truly a House of Healing.

I will share their information with you in my next post since this one has become too long.

We are finally done with our study. The technician comes in to remove Nick's leads. Noelle, the nurse, brings us our discharge paper and we are ready to head home.

Nicholas and I are both exhausted from our restless night.

On the way out of the hospital, Nick notices the gift shop where a large group of balloons are swaying.

"Mom, can I get a balloon?" Nicholas asks.

"Yes, Nicholas," I answer, "you were very brave and I am very proud of you."

"You are?" he asks.

And in the bundle of bouncing balloons, is of course, his favorite.

As we head home from our adventure, Nicholas falls asleep in the car, under the watchful eye of his good friend, Dora the Explorer.

I am glad our adventure is over.

The Shootists

2012-01-08T14:01:00.000-05:00

It never fails. No matter what I purchase for the boys for Christmas, it is always the $1 items I buy at the Dollar store that seems to give them the most pleasure.

Last year it was FLARP, a slimy substance that mimics the sound of flatulence.

This year, it's the plastic NERF guns.

Now, I am a pacifist. I detest war, violence, guns or weaponry of any kind. However, I live, unfortunately, in a household full of male energy, males who enjoy chasing each other around the house, recreating a fiery shoot-out in the middle of my kitchen . Males who could probably make a career out of faking their most gruesome demise from make-believe gun shot wounds. I have watched as both my sons have flung themselves to the floor and cried out in agony as they pretend to gasp out their last remaining breath.

"Oh Weston, I don't think I'm gonna make it," Nicholas pants as he tumbles to the ground in an Oscar-worthy performance

"Gaaaahead," Weston bellows, "make my day," as he strategically places his final fatal fake shot and puts his sweet younger brother out of his misery.

But amidst the fiery shootout and the graphic death scenes on my kitchen floor, the boys have become somewhat creative.

They have designed their own personal body armor.

In a flash of genius, Weston grabs two of Nicholas's backpacks and straps them to the front of his chest.

"Hey Nick, look, I have my bullet proof vest on!"

Not wanting to be outdone by his creative older sibling, Nicholas grabs a sack and straps it to his chest too. Of course, it is his favorite...the pink Dora backpack. He utters a blood curdling scream and runs after Weston in a firing frenzy, while the smiling pink Dora serves as the imaginary bullet protecting shield.

"I'll get you Mr. Terminator!" Nicholas wails.

In true Mummy fashion, I try to take a photo as they fly around and around the room with toy guns blazing.

"Wait a minute Mom." Weston says. "You need to get a good picture of our bullet proof vests." He pulls his brother close, puts his arm lovingly around his brother's shoulder and smiles.

It is a tender moment, a loving time-out from the blood and guts of weaponry and warfare.

For the life of me, I don't think I will ever understand the minds of boys!

A Haircut for the Hospital Stay

2012-01-07T13:40:00.000-05:00

Dad took Nicholas out today to get his hair cut for his upcoming stay at Children's Hospital on Friday. I think he looks incredibly handsome!

He will be having another overnight EEG to determine the status of his night time seizure activity. Nicholas suffers from ESES, Electrical Status Epilepticus of Sleep Syndrome. It is a rare form of epilepsy. Click here to read a previous post about this condition. Since he received poor results from his Neuropsych testing, we are assuming that his seizures have increased. This test will give us a better understanding of what is happening inside Nicholas's brain.

If his seizures are increasing, we will try to manage them better by increasing his Lamictal dose, or by trying a new medication, if necessary. The EEG will also tell us where in the brain his seizures are originating (left, right, temporal or occipital). Once we determine the location of origin of the seizures, it becomes more clear why we may be seeing regression. Different areas of the brain, control different functions of the body.

We have seen some regression in his speech, fine motor and cognitive abilities. It will be interesting to note, if this regression correlates to the origin of the seizures.

In true Nicholas fashion, he is very excited about his upcoming stay at Children's. I on the other hand, am not. Since it is the Neurology floor, there can be many young patients with severe brain injuries. My heart longs to help the parents of these suffering children. There are many images I have in my mind from previous visits that I will never forget. It is a deeply emotional experience.

Nicholas is not particularly fond of attaching all the leads and wires to his head. But we have discovered from previous visits, that if we cut his hair super short, the EEG technicians can use a tape instead of a smelly glue. Use of the glue requires the technician to blow air from a tube onto Nicholas's head. The smell of the glue, the noise and the cold air blown from the tube, is all very upsetting to the highly sensory-sensitive Nicholas.

"Oh no Mummy, not the air!" he will wail uncontrollably.

But by using the tape instead of the glue, we avoid this stressful situation and Nick is able to wait more patiently as they attach all the leads to his tiny head. The entire procedure takes about an hour.

His favorite part of his experience, is of course, the tiny black backpack he gets to wear all night! He has asked me if the staff will let him take one home this time.

Nicholas loves everything about the hospital experience. He loves meeting so many new people. He loves the cafeteria food delivered to him on a tray. He loves watching movies on his own television set. But most of all, I think he enjoys just spending the time alone with Mummy.

The EEG technicians have nicknamed Nicholas, "the mayor" since he loves to chitchat with all of the folks on the Neurology floor. Click here to read a previous post of our experience.

I will keep you all informed of our progress.

The Finishing Touches on Nick's Franklin Shell

2012-01-04T12:44:00.000-05:00

Last week we went back to visit John Wall, our good friend and favorite Orthotist. He made the final adjustments on Nicholas's new scoliosis/kyphosis brace.

Scoliosis is a curvature of the spine, kyphosis is a hunching of the upper back and shoulders. Both, are common to individuals diagnosed with Prader Willi Syndrome. Hypotonia, or low muscle tone throughout the body seems to contribute to these conditions.

Nicholas loves his new brace. As I have mentioned before, he calls this his "Franklin Shell". I would love to take credit for this brilliant naming of the brace. But alas, I cannot, as it was Nicholas's brain child and clever observation. (mental retardation, my foot!)

"Franklin" is a turtle. He is one of the cartoon stars of PBS television and another of Nicholas's favorite characters. Franklin is also a book series. Nicholas adores these stories and has been the only student at the elementary school library to check out "Franklin's Halloween" in the middle of winter. In fact, Nicholas has checked it out all year long, some 27 times. Thankfully, the school librarian has been very accommodating in indulging Nick's passion for Franklin.

Anyway...

With the Franklin Shell now complete, John made the last finishing touches on this new beauty of a brace.

John puts the brace on and Velcros the straps in the back

He marks where he needs to make minor adjustments, like cutting back some of the molding.

These Velcro straps go over Nick's shoulders and attach to the front of the brace to pull his shoulders back

I love this photo of Nicholas looking at John.

Weston waiting (not too patiently) as John attaches the left strap

Then the right.

Next, John places a red line on the strap with so that we know how tight we must adjust the straps.

And viola, it looks something like this!

John also cuts down Nick's shoe inserts so that they now fit inside his shoes.

The shoe inserts are used to correct a condition called valgus foot, or "flat feet" another orthotics issue that is very common to individuals diagnosed with PWS. It can be a very painful condition and if left uncorrected, can lead to other more serious issues like hip or knee problems. Nick has had shoe inserts even before he learned to walk!

And so with new shoe inserts and a new Franklin Shell, Nicholas is all ready for a happy and healthy New Year.

The Year of the Blue Water Dragon

2011-12-31T14:36:00.000-05:00

Based on the Chinese Calendar, 2012 is the Year of the Blue Water Dragon

Just for fun, according to Verbena of California Psychics:

"The last Year of the Dragon, which occurred in 2000, was fraught with fear. There was a lot of hand wringing about the collapse of our technological world, the Y2K bug and other millennial prophecies that turned out to be more hype than bite.

The Year of the Dragon is again just around the corner and fear and trepidation are once more an issue. This time it’s the Mayan Calendar and the alleged 2012 Armageddon prophecy. Is the Chinese Year of the Dragon, which comes around every 12 years, truly something to be feared?

Unlike the wicked, fire-breathing dragons of Western mythology, China’s celestial dragon symbolizes potent and benevolent power. Dragons are ancient, majestic, wise, and intelligent, and Dragon years are considered particularly auspicious for new businesses, marriage and children. Dragon years also tend to boost individual fortunes and the world economy.

It’s also true, however, that all five of the Chinese Dragon years — Wood, Fire, Earth, Metal and Water — tend to magnify both success and failure. So while they can mark huge achievement, disasters can be equally immense. The Year of the Fire Dragon (1917, 1976, and 2036) typically wreaks the most havoc.
However, the Year of the Water Dragon (1992, 1952 and 2012) is noted for its calm, visionary intelligence, and balance of right brain creativity with left brain logic.

What influence might the Water Dragon, which rules from January 23, 2012 to February 9, 2013, have on the powerful energies already anticipated at that time?

Like all Dragons, the Water Dragon is an innovative, fearless leader. But the Water Dragon is also far more sensitive to others’ needs, and is more likely to be progressive and diplomatic, as well as socially and environmentally conscious. Because Water bestows a more peaceful disposition, this Dragon will act wisely and intelligently, and unlike his fellow Dragons, is willing to set aside his ego for the good of all.

This Dragon is a successful negotiator, and while he is adept at marketing, he also knows how to apply force skillfully when necessary. On the down side, the Water Dragon sometimes forgets to build a solid foundation for his grand plans, and he can hold on too long to pet ideas and projects, and thus create a famous Dragon-sized disaster.

If you subscribe to the dawn-of-a-new-era theory of 2012, then it’s easy to see how the influence of the Water Dragon will increase the likelihood of success for progressive movements gaining momentum all across the globe. Energy conservation and green energy-producing technologies, curtailing Global Warming, challenges to multinational corporations, attention to world hunger and the renewed health of the oceans and sea creatures will all likely fare well.

If your expectations tend more toward disaster, then you might expect tsunamis, hurricanes, monsoons and other weather extremes to be in the headlines.

But of all the Dragon years, the 2012 Water Dragon is most likely to bestow the Chinese Five Blessings of harmony, virtue, riches, fulfillment and longevity, adding even more weight to the growing belief that 2012 will be about breakthroughs, not disasters."

********************************************************************************

Happy New Year to all our readers!

May the coming new year bring you much happiness, health and peace!

The Grinch who Stole Nick's Christmas

2011-12-29T16:49:00.000-05:00

Nicholas and I are at it again.

I am in clean house-ivity mode, anxious to "get things done" and "put things away".

Nicholas is in the "holiday mode".

He loves to see the warm colorful lights of the Christmas tree. He delights in lighting the candles in each window every night. He enjoys living in a house filled with decorations. If it were up to Nicholas, Christmas would never end. Holiday lights and magic would continue throughout the year.

But this week my need to control clutter has escalated. I am starting to notice a trend. It seems that when I receive difficult medical news or another new diagnosis for one of my children, my pathetic need to control "something" in my life goes into overdrive. I go on a cleaning rampage.

Nicholas, seems to instinctively understand this quirky characteristic in his mother, and goes on high alert.

He has become the Decoration Detective of the house. Throughout the day he makes his Christmas patrol around the house to ensure his wacky mother has not hijacked any of his holiday cheer. He carefully counts the lights in the windows and the ornaments on the tree, performing a careful inventory inside his little head.

I, on the other hand, have become more like the Grinch, tip-toeing through each room removing the bamboozles, the woozels, the clumtrumpets and trains.

Today, I see Nicholas distracted in the living room, and pounce on my chance to de-Christmas the house.

I hug our life-sized Frosty the Snowman and head up to the attic, quietly climbing the stairs to carefully hide the white plastic man from my adoring young son.

"Mummy, what are you doing?" I hear Nicholas shout from the living room.

"Oh, nothing...." I say and kneel on the steps. I try to become more quiet but bang my head on Frosty's giant mittens instead. Like a bullet fired from a gun, Nicholas climbs the stairs to investigate.

"Not my Frostyyyyyyyy!" he screams and starts to cry.

Fat tears fall from his eyes like rain.

"Mummy, you can't put Frosty awayyyyyyy!" he says as if I am sentencing our chilly friend to a lifetime of hard labor.

"No Mummy, pleeeeease!" he says, and now I too feel like crying.

"Wait Nicholas, I have an idea!" I say and immediately he stops crying. Once again those 4 little words have saved my life.

"Why don't we put Frosty in your room! That way you can still be near him. He can watch over you when you sleep! What do you think?"

And like a happy switch that is flipped on in his brain, he immediately shouts,

"Yeah!"

"Oh Mummy, that's a great idea!" he shouts.

I carry poor old Frosty back down the stairs and place him at the foot of Nicholas's bed. As I plug him into the light socket, Nick smiles and jumps onto his bed. He lies back and is immediately mesmerized by the cheery face of the watchful, shining, plastic man. He is happy.

"Nicholas, I am going to put some of the other Christmas things away now." I say delicately to my son.

"OK, Mom," Nick says agreeably.

The warm glow of the tall smiling man has relaxed my anxious son. Like a powerful sedative, it has calmed him.

I too am suddenly mesmerized as the vision of the tall snowman standing at attention at the foot of my son's bed. But this vision seems familiar to me. What is it? I think to myself. Something standing watch over my son......? And suddenly I remember the words from a story I wrote shortly after Nicholas was born,

My son lay limp upon his hospital bed. A yellow feeding tube was taped harshly to his soft cheek; it traveled up his nose and into his stomach. To his soft skull another plastic tube was taped, pumping antibiotics into his fragile veins. Around his floppy body, a brace made out of thick straps and stiff Velcro held his weakened hips in place. Feeding machines and intravenous poles surrounded him like quiet metal soldiers standing at attention. Everywhere, alarms sounded, a constant reminder that this was hell and we now lived in it. (To read the story in its entirety, click here.)

As I see the tall snowman standing at attention at the foot of Nicholas's bed, my eyes start to water.

I am reminded of his infancy when instead of joyous snowmen, there were metal feeding pumps and tall IV poles standing watch over my fragile child. And although Frosty the Snowman may now take up permanent residency in my son's room, I am thankful for this joyous new image. I am thankful for Nick's health, his strength, his love for life.

My desperate need to clean the house is suddenly over.
My curse has been broken.

"And the Grinch found the strength of ten grinches plus two!"

A Merry "Muffy" Christmas

2011-12-28T10:50:00.002-05:00

After a difficult week of appointments and findings...it was a wonderful feeling to just stop and enjoy the holiday with the helpful, healing energy of family.

The boys were both very happy.

Weston delighted in a new BMX bike and although it is not "motorized" as he'd like, it is still capable of carrying him through the dirt and mud of the trails behind our home.

Nicholas on the other hand, was very specific about what he wanted this year...a Dora the Explorer kitchen. Santa did not disappoint him.

In the past, Nicholas always had trouble keeping up with the rate and speed at which Weston tore through his presents. Nick's fine motor difficulties made it tough for him to open presents quickly. This year, however,Nicholas was like a lightning bolt, tearing through wrapping paper as quickly as his brother did, his hands a blur! And on his face, a smile!

After the presents were opened, both boys enjoyed some time outside. It was cloudy and cold with a few flurries falling from the sky.

Nick in his new winter coat...being pestered by Weston

"What did I do?!

Of course it wouldn't be a holiday without Muffy pilfering some forbidden treats. As we spent our time outside, Muffy, the sneak, spent her time inside our home rummaging through the delicate treats on our holiday buffet table. Yes, Muffy the insatiable hound, eat an entire plate of ham/cheese and pineapple appetizers...toothpicks and all.

I was not very happy since I spent much of the morning lovingly preparing our festive feast! Only to return from the outdoors to see the pretty table now in ruins, ransacked by a rebellious rascal. Of course she spent much of the day with a hellacious bellyache recovering in her rehab crate!

Maybe next holiday....we'll learn.

Visit me Today at Hopeful Parents

2011-12-28T09:12:00.001-05:00

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Merry Christmas to All

2011-12-24T10:25:00.000-05:00

And to All a Good Night!

Wishing all of my readers a very Merry Christmas.

Happy Holidays to all.

Thank you all for listening.

Ho Ho Ho!!

Neuropsych Testing and Mental Retardation

2011-12-19T12:30:00.000-05:00

Last week, I traveled to Children's Hospital alone.

The results of Nicholas's Neuropsych testing were complete. Dr. Boyer requested to speak with me alone so she could review her findings with me in private.

I head off to the hospital, minus my faithful companion, Nicholas. The car ride is unusually quiet. There is no singing coming from the backseat as I fight my way through Boston traffic.

I take a deep breath and remind myself that the results of this testing are not important, but still I am anxious.

I park in the hospital garage. The silence now almost deafening as I miss Nicholas's laughter when he sees the coveted garage. There is no little voice to announce,

"Mummy, we made it! We're in the garage!"

I walk alone through the hospital until finally I reach Dr Boyer's office.

As I check in at the front desk, I am confused. Do I give the attendant my name or Nicholas's? I decide to give her both. The young woman smiles, but I am still anxious and wonder, inappropriately of course, if she knows something that I do not. I am dreading this meeting.

I sit in the waiting room and see the tiny "Dora" table and chair set where Nicholas loves to play. I feel alone and vulnerable. I miss Nicholas's calm, happy spirit, his loving and healing energy. I miss his angelic face. I hold back my tears.

"Mrs. Peters?" I hear, as Dr Boyer approaches me and shakes my hand.

This is it. I think to myself and take a deep breath.......it doesn't matter, it doesn't matter....I repeat inside my head trying to gather my strength to face the awful words I know I am going to hear.

Dr Boyer seems nervous. On her face, her most professional demeanor and suddenly I realize that she too is trying to find her inner strength.

She sits at her desk and places Nick's file in front of her. She follows her professional script and begins our meeting by describing Nicholas's strengths. But my thoughts are distracted, I hear only single words,

"Pleasant...talk, talk, talk.....loving.......talk, talk, talk......hard working....." I am struggling to be patient, waiting to hear what I came 30 miles to acknowledge.

And then finally it comes....

"We performed many verbal and abstract tests and they display results that are similar to your parental questionnaire responses."

In other words, she knows that I already know what she is going to say.

"Your son is significantly delayed. I am diagnosing him with mental retardation."

Mental retardation.

It is a terrible word.

Immediately, disturbing images flood my mind, thoughts of straight jackets, barred windows and dark institutions. Inside my mind, I hear the screams of deranged individuals sentenced to a life of imprisonment. A not so distant reality for many diagnosed with this condition.

It is as if a demon has suddenly materialized inside my brain. He is laughing and sneering. He is running through the halls of my mind, smashing the happy pictures that hang there. And on the floor of my brain, he stomps on the shards of glass and shattered photos of Nicholas smiling and singing. He laughs as he creates a hellish bonfire burning the tiny torn pieces of my dreams for my son. He extinguishes my last fragile shreds of hope.

Mental retardation.

It is a word no parent is ever ready to hear.

When you are the parent of a child with special needs, you are prohibited from living in denial.

Any positive outlook you may possess for your child's future, is quickly tempered by intellectual reality. You are surrounded by professionals who will remind you of your child's handicaps, his issues, his disability. Teachers, therapists, physicians, and psychologists are strategically placed throughout your life to remind you that your child has been diagnosed with a mental illness. They are armed with test results and progress reports. They are persistent and eager to share their unwelcomed findings with you. You may disagree with their methods or test results, but it is irrelevant, all that matters is that you listen to their emotionless results.

As a parent of a child with special needs you cannot run and hide, you cannot bury your head in the sand, you must listen patiently as yet another professional tries to pigeon hole your child. You must face the cold reality of your child's diagnosis....again and again and again.

These professionals will remind you that academics is no longer the focus of learning for your child. They tell you life skills training is the only hope your child has for a happy future. Any chance of intellectual greatness is gone. Recognition or acclaim in society is only a passing shadow, a parent's delusional dream. Your child is somehow less. He is less smart, less able......less of a human being.

Dr Boyer is speaking, but I do not hear her. Instead, I am distracted by a new vision in my brain, a vision of Nicholas. In my mind's eye he is holding his teddy bear tight to his chest. He is swaying back and forth, comforted by the love he feels for his beloved toy. This vision of Nicholas renews my lost courage and hope. I am awakened. I can now hear Dr Boyer.

I thank her for her time. I tell her that I am not in denial and understand what steps I must take to ensure my son has a viable future. I tell her that despite this testing, I will insist that we continue to teach my son all that he can learn and that this diagnosis does not give us a license to become complacent about our approach. I tell her that I understand my need to know who will care for my son when I am gone. It is a silent fear that haunts me every day.

I tell her that I appreciate her report but believe it is important to remember that I have hope for my son and his happy future. That to me, intelligence has never guaranteed happiness. Instead it is a loving heart that brings contentment. It is the ability to think about and truly love others that fulfills a person's soul and makes the world a better place for everyone. Perhaps in time we will find a test to measure this important quality for.... "to love" is truly "to live".

I left Dr Boyer's office feeling somewhat numb and although I felt sad, something kept me calm, something stopped me from crying.

It was time to pick up Nicholas from school. I drove to his school and waited in my usual spot on the benches inside. A few minutes later, Nicholas came around the hallway corner, as he saw me he ran into my arms.

"Mummy," he says, "I had a great day!"

I hug him tight, thankful that I am once again in his calming presence. My heart feels restored.

"Are you proud of me?" he asks.

I hold him tighter.

"Yes, Nicholas, Mummy will always be proud of you."

And finally, in my son's loving presence, I can no longer hold back my tears.

Scoliosis and Nick's Back Bracing Process

2011-12-16T16:55:00.001-05:00

Many individuals diagnosed with PWS suffer from scoliosis or a curvature of the spine. Nicholas was diagnosed when he was just an infant. His low muscle tone does not pull strongly or evenly on his spine and as a result a curve in the spine was formed.

If his curvature increases too much, his organ function can be effected. Things like breathing and heart rate can be disrupted.

Two years ago, Nicholas's curve began to increase to over 25 degrees. His Orthopedist, Dr Zimbler, treated him aggressively and ordered him a brace. It is a hard, clunky device made of rigid plastic with Velcro straps in the back.

This is Nicholas in his brace last year.

The good news is....Nicholas loves to wear it. He calls it his "Franklin Shell" because it reminds him of Franklin the Turtle. I think it must also give him some much needed support to his spine. Dr Zimbler x-rayed Nick in his brace and was happy to see that his spine looked straight as an arrow.

He wears this brace for about 4 hours during the day and another 4 hours or so at night.

The only disadvantage to the brace is of course, growth. In the last few months, Nicholas has had a growth spurt, outgrowing his beloved brace. So this week, we had an appointment with our good friend, John Wall, Nick's Prosthetist/Orthotist.

We have worked with John since Nicholas was an infant. He is very tolerant with Nicholas and his difficulties staying focused. He always provides a video or two to help keep Nicholas entertained. He is a master at distraction, a relentless tickler and a lovable "kid at heart". He has designed and manufactured a slew of back braces and foot orthotics for us over the years. He is yet another "special healer" whose contribution to our son's well being means so much to us.

Here, John places a specialized breathable t-shirt on Nicholas. This t-shirt is worn under the brace. John then takes several measurements, front, back, length, height etc....

It takes a long time to take so many measurements but John's calm demeanor and great sense of humor helps to keep Nicholas entertained as he is fitted for his brace.

This time Nicholas chose a fish pattern for his new brace design. It looks something like this....

It will take John about 2 weeks to manufacture the device.

I will post photos of the finished product during our next meeting with John on December 30.

Santa Comes to Town on a Firetruck

2011-12-11T15:09:00.001-05:00

One of the great things about living in our town is the fire department.

Every December, they shine up their trucks, cover them with holiday lights and decorations, and travel down every street in town, flashing their lights and blowing their horns. Included in the fire truck procession is, of course, Santa Claus, who rides one of the big rigs as he waves to all the children. His truck is always covered with the most Christmas lights.

Also included in the parade, is Frosty the Snowman, who sits in a truck pulling a trailer. He collects "Toys for Tots" from all of the children in town. Every year, they collect hundreds of toys for needy children.

Weston and Nicholas look forward to Santa's visit every year. They each contribute a toy to Frosty's trailer. My husband, Pete, is not a "holiday spirit" kind of a guy, but even he gets a smile on his face when they pass by our driveway. I must admit, I too enjoy the spectacle.

The weather does not always cooperate however, and in the past, poor Santa has braved snow, sleet and even a nasty thunder and lightning storm one year. This year, however, it was sunny, clear and cold!

The noise of Santa's blaring horns can be very loud!

Nicholas is always sure to wear his head phones.

This helps him to watch the Santa Tour without getting upset.

Even Dad enjoys the show

It is a wonderful Holiday tradition for all of the children in town!

Even a few big ones!

The Swear Word Sheriff of the House

2011-12-07T09:58:00.001-05:00

My son, Weston is in the 7th grade.

True to the spirit of a pre-teen boy, he now embraces the "cool" culture of middle school kids.

He wears low rider jeans.
He yearns for ipods and cell phones.
He notices pretty girls.

But there is one middle school activity, that my son, Weston does not care to engage in......no matter how cool it is!

He absolutely, positively WILL NOT.....................swear!

EVER!!!!!!!

In fact, it upsets him to hear others use foul language of any kind. If someone is swearing, he will flee from the room covering his ears as if the words were somehow made of airborne acid.

Now, I would like to say that his disdain for inappropriate words is due to my fine example of parenting perfection, but I would be lying....bigtime...as this is simply NOT the case. I must admit from time to time, I will often utter an expletive or two, usually under my breath.

My husband, Pete is also not exactly a perfect role model of a speaker. Being a onetime marine serviceman, he is very comfortable, perhaps a little too comfortable using the old "barracks" lingo.

But rest assured, if any of us indulge in foul language of any kind, Weston,the profanity policeman is there to accost us.

"Mommmm," he'll say, rather annoyed, "You're doing it again."

And suddenly, I'll realize that I have subconsciously let another "zinger" slide.

Even mild-mannered Nicholas, picked up on this terrible habit, when one day, he told his father he wasn't going to take any more of his "shit".

I have found that swearing is alot like yawning, it's catchy. When I am around a person who swears, it isn't long before I am doing it too. But since Weston has become so sensitive to its ill effects, all of us have made an effort to curb our use of swear words.

At first, it was difficult for us to stop using this type of language. But we soon learned to control our tongues or face the "Wrath of Weston". Make no mistake about it, Weston has become the self imposed, swear word sheriff of the house. He is quick to identify the latest offender who has made the serious mistake of using an outlawed word.

This language cleansing was particularly tough for Pete, who works daily alongside fellow tradesmen who pride themselves on their use of colorful metaphors.

"Daaaadddd!" Weston will shout, when a foul word happens to slip.

"Sorry Weston," his Dad will reply as we all are learning to clean up our acts.

"Why do so many people swear?" Weston will ask me.

"I don't know," I answer, "Maybe it's because, they think it's cool, or they think it makes them sound tough, or they don't even realize they're doing it."

"That doesn't make any sense," Weston says "swearing just makes people sound dumb."

"You're right," I say and pray that he keeps up with his penchant for profanity-free parley.....for all of our sakes.

The Sound of Angels

2011-12-02T14:56:00.001-05:00

My husband Pete is a big guy. He is 6'1" and weighs about 200 lbs. He served in the Marine Corps and looks a lot like Vin Diesel.

Kinda scary-looking right?

I have written many times about his occasional work at the Perkins School for the Blind. Pete is a union HVAC mechanic for a Boston company. Translated into English, that means he works on large corporation heating (H), venting (V) and air conditioning (AC) equipment.

Having two children of his own that struggle with issues related to their disabilities, Pete takes his work at Perkins very seriously and works diligently to ensure the children are always comfortable.

This week, he was working at the Howe Building.

Attached to the Howe Building is the characteristic Bell Tower and the Allen Chapel. Also located in the Howe Building, is the Research Library. It was here that Pete was working independently. Suddenly, he began to hear an unusual sound. Softly, at first, came the sound of singing. As he listened closer he could hear the sound of children's voices begin to build and echo throughout the building.

The sound of these delicate voices originated from the Allen Chapel and drifted melodiously throughout the building louder and louder until finally my big burly husband was frozen in place. He was immobilized by this beautiful sound that began to stir his soul. He felt almost as if he had been transported temporarily to Heaven...as the sound of the children's voices could only be described as angelic, with a purity of heart and spirit.

And once again my big, strapping husband puts down his tools and is moved to tears.

Bernardino Luini (artist)

One Mother's Secret Tools for Coping with ADHD

2011-12-01T09:28:00.001-05:00

OK, so I have read every book ever written about ADHD. I have followed the advice of consummate professionals, folks like Dr. Russell Barkley and Ed Hallowell.

I have utilized every strategy ever invented for managing a fuel-injected child and his explosive hemi-powered engine.

I've tried:
Vitamins
Fish oils
Removing sugars and dye
Behavior management plans
Relaxation
Exercise programs
Medication

And while all of these tools have been very helpful, I can tell you without a doubt......that I could teach these experts a thing or two about taming my wild beast.

As a mother entrenched in the day to day combat of calming an out-of-control child, I have come up with my own list of secret weapons and "enemy control" observations.

And the list goes something like this.......

1) Legos: Never ever underestimate the power of the Lego!

For some kids it may be coin-struction, techno gears, timber logs or erector sets but for my son, Weston, it is all about the Legos. I have purchased countless planes, trains and automobiles for my son to build out of legos. And build he does, usually forgoing the accompanying instructions and building the vehicle strictly by instinct. Once completed, it will last a few days before it is quickly disassembled and re-engineered into a moving vehicle "thing of beauty".

But more importantly, for my son, Weston, Legos help him to listen.

While furiously engaged in building the latest wheeled wonder, my son's ears are finally opened. If there is something important I need to discuss with my child, I simply hand him a box of lego pieces and viola... presto chango....a little boy with the ability to sit in one place and just listen.

Secret number one....if you want to get a boy with ADHD to listen....put something in his hands.

ps.....I think this one also works on husbands!

2) The Great Outdoors: There is something about fresh air that seems to contain some magical combination of positively charged proton and electrons that actually hypnotizes the brains of bustling boys. The simple act of being outside has the power to calm my son's restless spirit. If it were up to me, I would design a school for boys that holds all its classes outdoors, even in winter.

3) Masculine Energy: My son gravitates almost instinctively toward any kind of male energy. Husbands, male teachers and older high school boys all have the ability to easily engage my son. Difficult activities for my son will always be approached easier if a male is doing the prompting. And like magnets that repel, mothers, female teachers and girls can send my poor son squirming. Don't ask me why!

The school had experienced a lot of trouble getting Weston to participate (happily or appropriately) in social skills training groups. I suggested they add a very "cool" high school boy to the class. Sure enough, it is now Weston's favorite class of the day.

4) Music/IPOD's: The louder the better. In fact, I have another mother's theory......

Secret number two...if your child enjoys listening to loud heavy metal music like Metallica, there is a probably a pretty good chance that they could be diagnosed with ADHD.

But once again the interesting concept is that certain types of loud, awful, noisy music actually helps my child with ADHD to calm down and focus. I have motivated my child through dinner and difficult homework assignments simply by using an IPOD. The louder the music, the calmer my child....again..don't ask me why!

5) Swimming: Simply place my child into a warm (!) pool and watch how much he starts to talk. And since Michael Phelps, the Olympic Champion and fellow ADHDer has also been so successful in this environment, I think there is really something to the magical properties of water.

6) The Beach: My son Weston is a born treasure finder. His eyes are constantly scanning the ground for interesting items that have been discarded by others. He has found more lost baseballs, coins and paper money than anyone I have ever met in my life. The beach environment provides an endless environment of interesting "finds". It is the only outdoor place I can take him where he can spend hours and hours happily engaged.

7) Video Games and Computers: I know that every family therapist and practitioner worth their weight in salt will disagree with me vehemently..... but I will swear by these tools until I die. This form of entertainment is one of only a few indoor outlets I have found that enables my child to engage in a single activity for any length of time.

8) Individual Sports: (stressing the word "individual" here) Things like, tennis, running, hiking, cycling.....anything where he can expend lots of energy on an individual basis is good for Weston.

9) Give Him a Job To Do: If I want to keep my son happy all I need to do is give him a job. He will gladly sweep the floor or wash the windows provided it is fun and he doesn't have to do it for long.

When Weston was younger he had a lot of trouble during recess. I asked the principal if she had any outdoor jobs that needed completing. So instead of wandering the fields with no friends or suitable activities to do, Weston could do things like pick up the trash and place it in big bags or rake some of the flower beds. The interesting thing was.....many of his fellow classmates were also drawn almost instinctively to these types of activities and joined Weston in his cool new role.

There are also some things that negatively effect my sensitive son. And they are (in no particular order)

1) Smells: I was never more aware of this until I brought my son into a Yankee Candle Shop. The overwhelming aromas of Christmas tree needles and orange blossoms nearly put my son into cardiac arrest. He left the store running. He once had a classroom next to the cafeteria and well........you can just imagine.

I have often thought, however, that he may be able to have a career in the perfume industry since he has one of the most discriminating sniffers in the world.

2) Low Pressure Fronts: OMG is all I can say. If there is a powerful rain or snow storm coming....I can always tell by the grouchy behavior of my eldest son. He is miserable. By the same token, sunny and clear days are when he is the happiest. I have become somewhat of a weather expert using my son as my daily barometer.

3) Blood Sugar: If I could somehow place an intravenous needle into my son's arm just before he wakes up in the morning, I would save myself and other unsuspecting family members and pets from merciless moody melt down mornings. I have learned to make his breakfast before he wakes up so that when he arises....he eats as soon as humanly possible.

Meals and snacks must be provided on a consistent and timely basis throughout the day so that his stomach is somewhat full....if not....watch out...because in my son....hunger=anger, they are synonymous.

4) Organized Sports: Very difficult for my son to be successful in these types of venues. The overwhelming noise level, the disarray, the necessary teamwork and cooperation......his lack of ability to tune out extraneous stimulus inhibits his ability to be successful in these types of programs.

5) Bathroom Functions: My son absolutely positively CAN NOT concentrate if he has to go to the bathroom. If he has the urge....he has to go....no if ands or buts (pardon the pun). Many teachers believed it was an excuse my son used to escape from class. But I can tell you without a doubt that the bathroom is one of our most utilized rooms in the house. I think this must relate to his inability to control impulses...bathroom impulses included!

This list is a work in progress. I add to it as I discover new things that effect my hypersensitive son. For instance, we learned over the holidays that warm jacuzzi baths (powered on full blast) have the power to calm my restless son and help him to sleep better.......

For me, as a mother of a child diagnosed with ADHD, I have found success in the most unlikely of places. By uncovering unusual tools and employing "opposite thinking" the restless spirit within my son is finally calmed.....at least for a few moments.

A Friend for Life

2011-11-30T09:11:00.001-05:00

So, after a lovely two days in the mountains, both boys have developed a cold.

True to his high energy and quick burning metabolism, Weston churned through the sore throat, stuffy nose and cough symptoms quickly and is well on his way to recovery, begging me to return to school.

Nicholas, on the other hand, has a weakened immune system, and true to his laid-back nature, he is struggling to recover from this nasty bug. Unlike Weston, he is in no particular hurry to return to school.

Upon hearing the news that Nicholas was under the weather, my good friend "S" dropped by our home to visit our sniffling patient. With her, she brought this adorable, fluffy, stuffed puppy. Nicholas immediately hugged his new furry friend for life and said with his whole heart......

"I love him."

He has not stopped kissing and carrying his new best friend.

My friend "S" is the most thoughtful and generous person that I have ever met. I have known her since the fourth grade. That's right.......the fourth grade! I don't think there is anything that I have in my life today....that I have had since the fourth grade!

We have gone from jungle gyms and junior proms to jobs, marriage and children of our own.

She is kind, thoughtful and a good listener. She is a loving caretaker to friends and family alike and is always the one who happily organizes "get-togethers" with the girls. She is an awesome athlete, a true "natural" in every sport she ever played. She has a happy face, smiling eyes and the most contagious and hearty laugh that you have ever heard in your life. We have shared a good many of these side-splitting, tear-forming laughs together throughout our lives.

Lately, she has been like a sister to me.

Thank you S......for all that you do for me and my family!

Winter Wonderland at the Wentworth Inn

2011-11-28T08:59:00.001-05:00

We have returned safely from our Thanksgiving excursion to the white mountains of New Hampshire. I am happy to report that we all enjoyed our stay at the Wentworth Inn in Jackson, New Hampshire. It was a very happy mini vacation.

Pete arrived home at noon on Wednesday. We quickly packed up the truck and headed northward. It was pouring rain.

Shortly after crossing the New Hampshire border, the rain turned into snow.

The dull gray environment instantly transformed into a snow covered landscape. The large pines towering on the side of the road were weighted down by a blanket of snow. It looked beautiful, almost magical and full of holiday anticipation.

A pretty waterfall along the way.

The driving became difficult as icy ruts started to form on the roads. Pete had to slow the vehicle as we bumped along the slippery highway. Just then, two snow plows pulled out in front of us helping to remove the icy ruts and clearing a smooth pathway for us to pass.

With their bright lights flashing, they seemed almost like reindeer guiding our loaded sleigh. The boys were thrilled at the impressive display of heavy equipment in action. I was thankful for the distraction.

New Hampshire highway teams are no amateurs when it comes to snow removal. The boys are now in heavy highway equipment heaven.

Our progress northward was slowed by the plows, but eventually they turned off the highway and we continued on toward the hotel. The more north we headed, the more snow covered the ground, until at last, we arrived at the hotel where they had received a foot of sparkling new snow.

We entered the lobby to check-in. There, we found a crackling fire warming the room. Nicholas laughed out loud at the sight of his coveted fireplace and ran over to the glowing light to get warm.

Check-in area at the front desk

Small shops off the front lobby

We were placed in the Fairlawn Suites, a small apartment type complex across the street. We entered the room and were happy to see yet another gas fireplace.

By now it is time for dinner and Nicholas is hungry. We drop off our gear and head back into town to search for a restaurant. The town of North Conway is unusually quiet as many families are preparing for their Thanksgiving dinner. It is like a ghost town. We find a small pub-like restaurant and are immediately overwhelmed by the smell of grilled steak and hamburg. Pete, a hamburg connoisseur, smiles brightly. He is happy. The host, brings us to our table....and there, believe it or not, is yet another roaring fire. Nicholas is beside himself and very, very happy.

The best seat in the house

The meal was delicious and we feasted on nachos and burgers.Weston ordered a heaping plate of baby back ribs and continued to eat them all.

We finished dinner and headed back to the hotel to sleep.

The room had a king bed and pull out couch for Weston. We ordered a cot for Nicholas. Instead, they brought him a blow-up mattress. We all settled down for the night. All except for Nicholas whose blow up mattress had sprung a leak and the poor lad kept sliding out of bed all night. And even though he delighted in being close to the fireplace, he couldn't sleep and climbed into bed with us.

The next morning was glorious, with bright sunshine and very cold temperatures. We ate breakfast and took a walk through the quaint little town of Jackson, New Hampshire. It is a town devoted almost entirely to tourism. It consists mostly of lovely restaurants and quaint bed and breakfast hotels. The newly fallen snow glistened as we took photos and walked through the quiet streets.

porch area of the Snowflake Inn

Inn at Jackson (another B&B)

skating pond

S-Kimo's Ski Club (get it?)

Carter Notch Road

This heads up to Eagle Mountain House another B&B

To the right of the gazebo is the Wildcat River (a part of Jackson falls)

Next, we head back into the deserted town of North Conway where I have never, in my many years, seen it so empty. We decided to explore the Conway Railroad. We saw the Polar Express train resting before its busy use in the upcoming weeks. There was also a collection of old cargo trains and cabooses. Weston enjoyed walking around and reading the information listed on the side of each train.

The Polar Express

Conway Scenic Railroad

A red caboose

Another red caboose

For Weston, Thomas the train is officially out...this old train is officially IN

A snowman silently guarding the train yard

A lovely view of Mount Washington under snow and cloud cover

Soon, it was time for dinner. We dined in the lovely main hotel restaurant, where we feasted on turkey, stuffing, mashed potatoes and gravy. It was delicious. Weston ordered the salmon instead of the turkey and ate his entire plate full of food. Must be something about that mountain air that jump starts an active boy's appetite?

But the most delicious part of the entire meal was the pumpkin pie. It was made with a gingerbread crust that was simply "to die for". Pete, who is also a dessert connoisseur, asked for a second helping. The waitress laughed and brought him a slice of pumpkin AND a slice of equally delicious apple pie, at no additional charge! Needless to say Pete gobbled them up...no pun intended! Of course we all helped him eat his heaping helping of heavenly pie.

When we left the restaurant it was dusk, the sun setting behind the mountains. It had become warmer so a fog had started to develop at the opposite end of the road.

The red sky at sunset

The foggy road

The boys decided to check out the jacuzzi tub in our room. I was very surprised since this sort of thing is usually upsetting to Nicholas (the loud noise, the sensory inputs). But with Weston in the tub with him, he loved it! They stayed in for 45 minutes then promptly decided to put themselves to bed! I think I have found another antidote to ADHD, since Weston could barely keep his eyes open.

It was a wonderful mini vacation. And despite a few meltdown moments, which is to be expected in a new environment, it was a wonderful, relaxing and enjoyable holiday that we will never forget.

Weston loved playing in the snow in the front of our cottage

Nicholas was more happy watching the fire

His "bum" mattress behind him

And as for me......this was my favorite spot

The Deadly Holiday Season

2011-11-27T17:06:00.001-05:00

The holidays are a festive and joyous time of the year. Friends and family gather together to enjoy fun, festivities and, of course, an abundance of food.

For most of us, food is an important part of these parties and celebrations. By preparing, serving and sharing our holiday dinner, we are, in a way, also sharing our love.

But for parents of children diagnosed with Prader Willi Syndrome, the holiday season is a time to be vigilant, a time to monitor our child closer than usual to ensure their very survival.

Every holiday season we are reminded by our national organization, PWSAUSA that this can be a deadly time of year for our children. Due to a malfunctioning hypothalamus in their brains, children diagnosed with PWS lack the ability to control their hunger and if left unattended, they will eat until they die. This is not a condition that our children will outgrow, they will need to rely on others to monitor their food intake for the rest of their lives.

During the holidays, homes are filled with festive discussions, folks talk and mingle, creating a spirit of good cheer and commotion. It is during this commotion, that we parents are easily distracted, creating a perfect opportunity for our children to disappear and search for food, food that is of course, everywhere.

School functions and party celebrations almost always include tables overflowing with candy and desserts. Aides and teachers must be carefully reminded of the devasting consequences of leaving a child with PWS unattended during these types of events. They must be informed that a behavioral meltdown is a certainity when our children are subjected to the visual stimulation of such large quantities of food and sweets.

When my son, Nicholas was first diagnosed with this bizarre and deadly disease, one of the first fears that came to my mind was how our holiday traditions would be effected.

Thanksgiving dinner was always served at my home, the theme... food...and lots of it. I enjoyed preparing many of the holiday specialties. Turkey, stuffing, potatoes, shrimp, mushrooms, sausages, cheese, crackers, chips and dips filled every inch of the holiday table. Decorative dishes, brimming with peanuts and candy were placed strategically around the house. Warm pumpkin pies, brownies and chocolate chip cookies filled another table along with apple cider, egg nog and a variety of soda. There was plenty of food, family and fun.

But how could my son be successful in this type of environment? How would we monitor his food intake? Would he be overwhelmed by the many sights, sounds and smells associated with a party environment? Would he have a tantrum? How would he ever feel comfortable surrounded by so much food?

After a few years of living in denial and trying to maintain the holiday status quo, I eventually came to realize that Nicholas could not be successful in this type of environment. If I wanted to ensure the health and safety of my son, it all had to change.

I was so very sad.

I felt like we were deprived and cheated, swindled out of the opportunity to enjoy our sacred holidays. The fun, the laughter, and most importantly the spirit of the holidays, would be enjoyed by everyone….everyone but us.

I believed anything different than our usual holiday routine would be sad and uncomfortable. I was sure we all would be miserable.

But as a parent of a child with special needs, you learn to be resilient. You learn to stop living in the past. You learn to live each day in the now, experimenting with new techniques, new outlooks and new traditions.

For the past two years, Pete, Weston, Nicholas and I have experimented with “going away” for the holidays.

This year, we found a lovely hotel, called the Wentworth Inn in the white mountains of New Hampshire. We stayed for two nights, enjoying Thanksgiving dinner in their cozy restaurant. Nicholas was thrilled, since it contained….of course… a fireplace. The night before our arrival, it snowed, covering the town with a blanket of sparkling brightness.

We took many walks and enjoyed the magical setting. And although we did experience a few “I’m bored’s” and a behavioral meltdown or two, we did not have to address any food issues. There was no stress, no food policing, and more importantly, Nicholas was kept safe. It was an enjoyable holiday experience that we will never forget.

Our new Thanksgiving tradition may not be shared in a house full of family and food but it is still shared with love, love for each other, love for our family and love for our new and different way of experiencing life.

We have learned to embrace different.

We have learned to experience life.

I am thankful to my son for teaching us this.

Come visit me today at Hopeful Parents

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Happy Thanksgiving

2011-11-23T09:02:00.001-05:00

It is Wednesday and we are packed and ready for our mini Thanksgiving vacation to the White Mountains of New Hampshire. Word from the north country is that it is snowing! The boys are thrilled and have packed up all of their snow gear. I am bringing my camera and promise to take lots of photos!

I would like to wish all of you a very safe, happy, healthy and joyous Thanksgiving!

The Visit from a Christmas Deer

2011-11-21T17:30:00.001-05:00

Nicholas and I finished up our last 3 hour Neuropyschology appointment today with Dr. Boyer. This type of brain bending work is usually very difficult for Nicholas, and perseverance is not one of his strengths.

But today, he did great. He was patient, focused and very calm. I was very proud of my little champ.

As we were driving home, we passed a loaded flat bed truck carrying a ton of Christmas trees.

Nicholas was thrilled,

"Mummy LOOK," he said, "CHRISTMAS TREES" and he stared at them in awe as we passed by the lumbering truck.

We picked up Weston from school and as we passed the town square, Weston notices that the Knights of Columbus were preparing their site for the festive arrival of the coveted Christmas trees.

"Mom, he says, "look, they're getting ready to set up their trees!"

We were all happy to see the first signs of the arrival of Christmas.

Once home, we settle into our usual afternoon routine. Muffy, our anxious beagle, starts to bark furiously at the door. Thinking it might be my Santa delivery from Amazon.com I head to the door before the boys start to investigate. Thankfully, I stop before yanking open the door, as there on our front lawn is a beautiful deer nibbling on the brush in our front yard.

It is a beautiful sight.

I call the boys over and we watch her in silence as she continues searching for edible greenery.

Finally, Nicholas turns to me and says,

"Mom it's a Christmas deer."

"Hey, maybe it's Rudolph!" Weston shouts.

Muffy paws furiously at the door and the lovely deer heads off into the woods.

It was a magical day.

The boys and I are very excited about our Thanksgiving trip to New Hampshire and of course the approaching arrival of Christmas.

A Picture is Worth a Thousand Words

2011-11-19T09:54:00.001-05:00

At long last....Nicholas's school picture.

As his mother, I think it is absolutely adorable, especially with his new Clark Kent glasses.

I am excited we have finaly received his new school photo and decide to show it to Weston.

"Wes, don't you think this is such a cute picture of Nicholas?"

He takes one look and says...

"It looks like he's mad."

Sweet Tooth

2011-11-18T11:33:00.001-05:00

Nicholas and I have returned from the dentist office.

Just another one of our many appointments this month.

Children diagnosed with PWS are at a high risk for developing cavities due to a propensity for thick saliva and xerostomia. Xero what did you say??Xerostomia. Pronounced....zero-stow-me-ah

Xerostomia is just a fancy word for decreased saliva flow, or "cotton mouth" if you prefer.

Cool word though, huh?

I think I will try to use it during our next IEP meeting.

Anyway, because of these issues, we try to visit with the dentist every four months for a cleaning and exam. In the past, this has never been easy for Nicholas. Dental visits cause him extreme anxiety. The bright lights. The moving chair. The scary tools in his mouth. Sitting still. All, are issues enough to cause Nicholas to scream. No screech is a better word.

"Muuuuummmmmmyyyyy,"he will scream, kicking and flailing while the frightened dental technician usually bolts from the room.

That is until we found Dr. Lindi.

Dr. Lindi Ezekowitz is a dentist who specializes in pediatric care. We were referred to her by a local mother who does not have children diagnosed with special needs. Her kids just hate the dentist. So she referred us to Dr Lindi and explained the good doctor's amazing techniques for calming her tiny trembling tots.

The last dentist we visited suggested we go into Boston and have Nicholas "put under" so we could clean his teeth. But the thoughts of driving into Boston and putting Nicholas "out" is not something I want to add to our already hectic schedule.

I have been using some visual picture cards at home with Nicholas to help him understand and prepare better for our upcoming visits. And while these picture cues have worked well to help calm his anxiety before our appointment, it is Dr Lindi who has been like a life saver to us. She uses a special darkened room with a comfortable kid-sized dental chair that looks up at the ceiling where a large flat screen tv has been installed and plays a variety of kid DVD's. A brilliant distraction device.

She is speaks softly and moves slowly, showing the petrified patient every tool she is about to use.

"Nicholas, this is what we are going to use to brush your teeth." she says and uses the rotating brush on his hand, stroking him gently.

"See, doesn't that feel nice?" she asks him.

"Noooo, I don't think so," Nicholas will usually say. And without engaging in a power struggle she simply says OK, and uses a delicate non motorized tooth brush instead.

For many years this is how Dr Lindi has worked with Nicholas.

She has worked hard to develop a comfortable routine for him so that every time he visits, he knows what to expect.

This week, however, was different as Nicholas decided that he was going to be brave.

Dr Lindi pulled out the scary metal scraper and once again explained what she was doing...

"Nicholas, I am going to remove some of the food that's stuck between your teeth."

"OK," Nicholas said agreeably.

For 20 minutes Dr Lindi was able to remove the plaque from Nicholas's teeth as Lightening McQueen roared loudly across the ceiling.

After she scraped, she showed Nicholas the motorized tooth brush...pushing her luck since he seemed so accommodating.

"Here's what I am going to use to brush your teeth."

"OK," was Nick's simple answer.

Finally, she showed him the fluoride treatment she would use to "paint" on his teeth. And once again came the compliant reply,

"OK."

The appointment was a brilliant success and Dr Lindi smiles brightly. She is as happy as I am that she finally tamed her toughest of tots. She has a kind heart and gentle spirit and I am reminded once again that we are surrounded in our life by many special physicians. I am comforted by these healers who accompany and guide us through the rough medical waters of caring for Nicholas.

"Nicholas, she says, you did a fantastic job!"

"I did?" he asks.

"Yes, you did!" She answers and places her hand on his shoulder. "Are you going to do this good next time you come to visit me?" she asks.

He gives her a big hug, looks up at her face and says,

"I AM!"

The Meaning of the Word "Pest"

2011-11-15T07:49:00.001-05:00

Nicholas and I have been slammed with appointments this week.

Usually, I try to manage our schedule better but the school and I are involved in a big debate. We are both trying to understand why it has taken Nicholas so long to master the art of writing. The school believes his cognitive levels are not sufficient enough for him to develop this skill. I believe his low muscle tone, weak fine motor skills and behavioral difficulties are to blame.

And so, to resolve our debate, we are seeking a Neuropsychological evaluation. The school offered to have their in-house psychiatrist administer the test. I decided to have a non biased outside evaluation performed by Children's Hospital Boston.

Nicholas's school was also seeking to cut back on his OT services. They have not offered any augmentative device suggestions or evaluations to assist my son in overcoming this writing deficit. He is nine years old! They performed a ten page in house evaluation with no solutions as to how we could address Nicholas's disability, once again citing cognitive issues. I decided to have an outside evaluation performed for OT and PT at New England Medical Center in Boston. This will be performed in December complete with specific recommendations for improvement of therapy services.

So.....as a result of all this additional testing, Nick and I are a bit overwhelmed with all of our appointments this month. We have already made several trips to orthopedics, neurology and the orthodontist. Of course, with all of these extra appointments he now ends up missing more school.....?

Once all Nicholas's testing is complete, we will have his IEP meeting. It is scheduled for the end of December. This should be an interesting meeting. I will, of course, keep you all posted.

Anyway....yesterday, was our first appointment with Dr Boyer, the Neuropsychologist. BTW, we have two 3 hour appointments scheduled with her. And later, a 1 hour appointment with just me to review her results.

I told Dr Boyer that 3 hours was a long time for Nicholas to stay focused and I feared he would tire. I explained that I may need to be present while she examined him. She preferred to try at least some of the testing alone. She did a very good job engaging Nicholas and they tested together for about an hour. Nicholas did finally tire and start to tantrum. We had him take a break, I gave him his lunch and we continued on with the testing with me in the room.

I tried to remain inconspicuous, and moved my chair to the corner of the room so I would not effect the testing in any way. I started to read a book that I had brought from home but I am distracted. I can't help but overhear the conversation taking place between Nicholas and Dr Boyer. It went something like this......

"Nicholas, what is the meaning of the word, apple?" Dr Boyer asks.

"You eat it," Nicholas answers.

"Yes, Dr Boyer answers, but what is it?" She asks, trying to get Nicholas to say the word...fruit.

Nicholas thinks for a moment and I swear I can hear his brain churning......

"Ummmm, I know!......he says.....IT"S FOOD!"

Nicholas has answered her correctly and I am amazed at how "cleverly" he has answered. Unfortunately, I realize that he will probably be penalized for his response since he did not use the specific word "fruit".

Dr Boyer sighs and decides to move on.

"Nicholas, what does the word "pest" mean"?

Again, silence as Nicholas thinks......and then finally,

"It's when you pester somebody," he answers.

Another sigh from Dr Boyer.

"But what is it? What does it mean?" And again she asks...."What is a pest?"

Silence again...longer this time.

Dr Boyer asks again gently, gingerly coaxing Nicholas to explain the word, she knows he understands...

"Nicholas what is a pest?"

And with one simple word, he answers her......

"Weston."

Mother Hen Children

2011-11-12T10:28:00.001-05:00

Every morning, Nicholas and I sit on a long row of benches just inside the front doors of the elementary school. We use this time to avoid the high level of noise and commotion in the cafeteria where all of the elementary school children meet before the start of class.

Transition times often trigger meltdowns for Nicholas. He is very sensitive to loud sounds in large, open areas where there is a lot of activity. He will cover his ears and begin to scream in places like this, so, instead we start his day by calmly waiting on the bench area where it is quiet. It makes for a much more relaxed start to his day. We talk, read, sing and say hello to folks who walk by. It is here that we wait for Nicholas's new aide, Mr. T (no not that one) to walk him to class.

Lately, Nicholas has developed a rather large gathering of friends who enjoy stopping by to say hello. At first, it started with just Addison, a rather cool 5th grader, who stopped by each morning to say hello. He lingered with us for a while, and it wasn't long before a few more children started to visit with us. Two of Addison's friends, Nick and Devon also joined our discussions. Pretty soon, our next door neighbor, Isabella and her friend Lexi also came by to chat. Finally, there was Jenna, Cole and Rebbecca.

What I notice most about these children is their genuine interest in Nicholas.

"What did you bring to school today?" Addison will ask.

The children immediately "oooooo" and "aaaaaaa" at the unusual array of ordinary items that Nicholas likes to bring to school, things like grocery store flyers, key rings, flashlights and candles. None of the children laugh or make fun of his choices, instead, they truly embrace his collection of unusual trinkets.

When they speak to Nicholas, each child bends down and speaks to Nicholas directly at eye level. They have discovered on their own, that this is the best method to use when trying to engage my easily overwhelmed child. I have discussed this "method of speaking to Nicholas" with many of his adult care givers, still, they do not understand or remember to do it.

These children, never forget.

When excited, Nicholas tends to stutter. He suffers from word retrieval difficulties. None of these children are impatient with him. None of them make fun of him. They know it may take him a little while to say what he needs to say. They continue to look him in the eyes and wait for him to finish, no matter how long it takes.

Nicholas's teacher, Ms S, also recognizes the skill these children have in dealing with Nicholas and has often sought their assistance in distracting Nicholas during behavioral outbursts. The kids have the innate ability to know exactly which tools to use in preventing a potential meltdown.

"Hey Nicholas, look at this," Isabella will say as she pulls out a candle from Nicholas's backpack. "Can you tell me what color this candle is?" And quick as a flash, Nicholas has now completely forgotten about his troubles and answers Isabella with a smile.

I am moved to tears, as I sit on the bench with Nicholas and watch him happily converse with his large group of cool new friends.

But of course all good things must come to an end, as the principal, rather displeased at all the commotion, sends them all away.

"Don't you have some place to be?" she asks sternly and quick as a flash, they gather their things to scurry off to the cafeteria. But before they leave, each one of them is sure to say good bye to Nicholas.

"Bye Nick, see ya tomorrow." Addison shouts.
"Have good day Nicholas" says Devon.
"Thanks for sharing your candles..." Lexi exclaims.
"See ya later good buddy." says Nick as he runs off to the cafeteria.

Mr T rounds the corner to come pick up Nick. Our neighbor, Isabella, hesitates before heading to the cafe and turns to the principal to ask...

"Would it be OK if I walk Nicholas to his classroom?"

Electrical Status Epilepticus of Sleep Syndrome

2011-11-09T17:52:00.000-05:00

Easy for me to say, right?

Also known as ESES, Continuous Spike and Wave during Sleep, CSWS or Penelope Syndrome. As in the myth of Penelope, the wife of Odysseus, what is weaved during the day will be unraveled during the night.

A lot of names and acronyms for what is simply a very rare form of epilepsy.

Nicholas was diagnosed with ESES when he was just four years old.

This is not a symptom of Prader Willi Syndrome.

Although, Neurologists do find that children diagnosed with diseases originating from chromosomal abnormalities are more at risk for developing this disease. Nicholas is just one of the lucky ones, I guess.

Children diagnosed with PWS often suffer from sleep apnea and tonsil enlargement. So when Nicholas was just a toddler we had a sleep study performed at Children's Hospital. Results of this testing indicated an unusual occurrence. Nicholas had one EEG spike during his sleep. No outward sign of a seizure, just a blip on his EEG.

We were off-handedly referred to a Neurologist. There wasn't much concern since it was only one spike. The Neurologist, Dr. Stavros (See my post entitled: Our Healer, Our Hero), suggested we perform a very in-depth 45 minute sleep-deprived EEG.

We kept Nicholas awake for an extended period of time, no easy task I can assure you. We then brought him into the Children's EEG lab early in the morning for testing. About a million leads and wires were slowly placed onto his skull, again no easy task, and his brain activity was monitored while he dozed.

I knew something was wrong since the EEG lab technician seemed very disturbed as the test progressed. He, of course, could not speak with us until the Neurologist evaluated the findings....but I already knew there was trouble.

Well, the next morning the Neurologist contacted our primary care doctor in a panic and explained that over 90% of Nicholas's sleep was disrupted by sub clinical seizure activity and he needed to see us right away. Again, no outward signs of seizures just spikes, but plenty of them. Nick's primary explained to me that she had never received an emergency call from a Neurologist before.

Dr Stavros explained that these spikes interrupted Nicholas's ability to enter the REM stages of sleep. This is the restful stage of sleeping that enables the body and mind to rest and rejuvenate. Without this restful sleep Nicholas would regress and we could see issues develop with speech, fine motor, behavior and cognitive losses.

Nicholas also had some starring off spells, where he would seem to zone out for a few seconds. The Neurologist explained that these were called absence seizures and were also a symptom of this type of epilepsy. Nicholas did experience some behavioral issues which we just assumed was attributed to PWS. His speech and fine motor abilities also became effected.

Nicholas was admitted to the hospital for overnight monitoring where it was confirmed he had ESES.

He was started on an anti epileptic medication immediately. Our choices were limited since many of these drugs also cause weight gain or suppress breathing which are not appropriate choices for a child diagnosed with PWS.

We tried a drug called Keppra but it caused Nicholas to spin emotionally out of control. We finally settled on a drug called Lamictal, taking two rather high doses each day.

Because Nick has been diagnosed with this unusual disease, we see a Neurologist at Children's Hospital in Boston every 4 months. Once a year, Nicholas is admitted to Children's where he has an overnight EEG performed. His next test is due in February.

The good news is ESES is treatable. With proper medication, Nick's spikes decreased in frequency and now interupt less than 20% of his sleep. Dr. Stavros also explained to us that ESES will usually resolve itself when a child reaches the age of about 12 years-old.

Last week was our visit with Dr Takeoka, who replaced Dr Stavros after he moved back to Cyprus. Dr Takeoka is a kind, intelligent and gentle man. He is never hurried or rushed. He takes plenty of time to patiently answer all of my questions and always treats us with much courtesy and respect. Often he spends more than an hour visiting with us. He has become another good friend to this family.

This time, before our visit with Dr Takeoka, we are given a hand-out from the Children's Hospital Neurology Department. This is something new. On the form is a list of information that all parents of children diagnosed with epilepsy must understand.

It explained about how some medications may lower the levels of calcium and vitamin D.

It explained the importance of monitoring and discussing any kind of regression we see in our children.

And finally, the hand-out wanted parents to know that children diagnosed with epilepsy are at risk of SUDEP.

What is SUDEP you ask?

SUDEP is Sudden Unexpected Death in Epilepsy and is a term that is used when a person with epilepsy suddenly dies. The reason for the death results from unexplained respiratory failure or cardiac arrest after seizures. Post mordem exams usually reveals no abnormalities in victims.

Research has estimated that approximately 50,000 people die each year in the US from prolonged seizures. SUDEP accounts for 8 -17% of deaths in people with epilepsy.

I had buried this neurological possibility somewhere deep within my subconscious several years ago. It is a topic I never wanted to think about. And since there is nothing I can do to protect my child from this risk, it is a danger that I prefer to completely ignore.

But before our appointment with Dr Takeoka last week, there it was......on paper....the brutal and "in your face" reminder once again of the well documented possibility.

And suddenly I felt just as I did when my son was first diagnosed.....overwhelmingly vulnerable.

Off to the Mountains for Thanksgiving

2011-11-08T12:01:00.001-05:00

The emotional difficulties of caring for a sick parent and two children diagnosed with special needs have begun to take a physical toll on me.

I am tired and feel somewhat sad and defeated after learning of my mother's new diagnosis.

I am beginning to learn about two important new concepts which I have found are critical to the overall well-being of this particular caretaker:

1) Pacing myself
2) Taking some time off

In an effort to rectify number 2......Pete, Weston Nicholas and I are spending Thanksgiving in the mountains of Jackson, NH.

We have spent many a summer vacation enjoying the scenery of this beautiful part of the country. In fact, it is the town in which we were married over fifteen years ago.

To get to the town of Jackson, you must first drive across this lovely covered bridge.

The town itself is nestled in the valley of Mount Washington where it is surrounded by the beautiful colored fall foliage. Although most of the leaves will have fallen by Thanksgiving.

We are staying in a baby grand historic hotel very similar to (but much smaller than) the one we visited last year (Mount Washington Hotel).

We will be enjoying Thanksgiving dinner in their casual yet elegant dinning room.

Of course, THE most important thing at least to Nicholas is........a fireplace! And our room will indeed have one as an amenity. Not this one though......

The hotel sits across from a scenic waterfall called Jackson Falls.

It is a waterfall that follows the town road for several miles. There is an upper and lower falls as well as many spots where folks can stop and enjoy small pools within the rocks.

Here is a video of the same falls after Hurricane Irene passed through in August. Kind of impressive since the storm was only a tropical storm as it passed by New Hampshire, imagine if it had been a hurricane?

Jackson NH is very close to both Conway and North Conway NH where there are outlet stores, craft stores, artisan shops, book stores and many restaurants all within the lovely wooded and mountainous environment.

North Conway also has a lovely old railroad station.

For the past several years they have begun offering scenic rail tours. Shorter trips catering toward the young children. And longer scenic tours complete with dinner service available for those without small children. And for Christmas time........a new "Polar Express" designed just for kids or those of us still young at heart.

Things like this however, can be very stressful for Nicholas because of the loud noises, unusual smells and "no escape" route possible but we may consider giving it a try this year.....who knows!

I am very excited about our upcoming trip into the wilderness. I know it is what I need to relax and simply enjoy my life with my precious family. Trouble is......I am just too darn excited about it all!

She Does....Maybe?

2011-11-06T15:12:00.000-05:00

On October 27, I took my mother to see a Neurologist who specializes in Movement Disorders. He has over 25 years of experience treating patients with Parkinson's.

According to this physician, there is no test that he can administer to prove definitively that my mother indeed has Parkinson's Disease. He can only evaluate her physically and prescribe a medication that may help to alleviate some of the symptoms. If symptoms improve, she has it.

It is difficult for me to believe that in this day of modern medicine, this is how physicians diagnose this illness. But I guess when I think about it, a diagnosis of ADHD is confirmed in much the same manner.

The doctor performed an in-depth physical evaluation of my mom noting specifically a tremor in her left hand, muscle loss in her right hand/arm, stooped posture, and shuffled walk. He asked me if she has ever experienced hallucinations, movement/talking in her sleep or incontinence. Yes, yes and yes. Muscle stiffness, aches? Yes and yes. Disruptions in her sleep schedule? Yes.

After a thorough evaluation, he concluded that he believed we should begin a treatment of Parkinson's medication for my mother and issued her a prescription. He explained that there were no adverse side effects she would experience on this mediation trial.

I feel so sad and yet, at the same time, somehow relieved, that we are getting closer to understanding what is happening to my mother. I am hopeful that we can alleviate some of her suffering.

Snowvember

2011-11-03T09:49:00.000-04:00

I have done nothing but grumble about the freak October snow storm. I am just not ready for another long year of cold, frigid temperatures and slushy, wet snow. Wah, wah, wah......

The boys, on the other hand, are thrilled.

They rifled through my box of last year's snow wear and found jackets, pants, gloves and hats that all seem to miraculously fit. I usually wait until the end of November to replenish the snow gear supply. This year, however, I have been caught totally off guard.

Every day after school, they drop their backpacks and don their ski pants to frolic in the frosty fall freeze.

Ahhhh, to be a kid again.....

Hard to believe it's November 3!

Appointment Highs and Lows

2011-11-02T11:33:00.001-04:00

Many children diagnosed with Prader Willi Syndrome suffer from scoliosis.

Nicholas happens to be one of them.

Scoliosis is a curvature of the spine. The muscles in a child's back, and particularly the strength of these muscles helps to hold the spinal cord in its straightened position. When there is a weakness in the back or when the muscles pull unevenly on the spine, scoliosis, or curvature can occur.

Many children diagnosed with PWS are also prescribed GH or nightly growth hormone injections. These shots help my son to grow more normally. However, if growth occurs too quickly, Nicholas's scoliosis may worsen. Because of this... his growth and back alignment are monitored every 4 months.

This is why it is imperative that all children diagnosed with PWS are followed by an experienced pediatric orthopedist. Other orthopedic issues that effect our children include hip dysplasia, overall ligament laxity (including elbow and knee dislocation potential) and flat feet. All of these conditions may be very painful if left untreated.

Since birth, Nicholas has been followed by Dr Seymour Zimbler at Children's Hospital. This man has over 45 years of experience treating children diagnosed with PWS and is the first physician I have met that understands more about the condition than I do.

He takes periodic x-rays and has prescribed hip, back and foot braces for Nicholas throughout his young life. Dr Zimbler is a very kind and serious doctor. He remembers Nicholas and his previous health status at every single check up, of course we have seen him now for almost nine years. He is an "all business" kind of a guy.

This week was time for our x-ray evaluation.

Nicholas was very cooperative as the x-ray technician photographed his back and side profile.

We entered the exam room where Dr Zimbler posted Nick's x-ray on his computer. As I saw it my heart sank. His spine looked as if it had turned due east.

Nick's x-ray

Previously, Dr Zimbler has explained to me that many individuals diagnosed with PWS will eventually require back surgery to correct this curvature. Typically, if the curve is greater than 60 degrees, surgery becomes necessary since the unaligned spine can now effect the function of internal organs like the heart and lungs.

As I looked at this x-ray, I was sure, the curvature was that bad. Inside my mind, I envisioned yet another surgery for Nicholas. Only this time, scoliosis correction surgery can last up to 8 -10 hours! With recovery being very slow and difficult for a child.

In my mind, I believe we are headed for surgery and held my breath as Dr Zimbler observed the photo. He too was very concerned.

"I'm going to need to take a look at him," he says to me, his brow tightened, his voice tense.

I was now certain we would be headed to Children's in Boston for surgery. Inside, I was shaking.

Dr Zimbler turned Nicholas around so his back was facing him. He had Nicholas bend down and measured his spine with a hand held device.

"Ohhh," he says, "He must have moved during the x-ray. He looks fine!"

I quickly released the breath I'd been painfully holding

"Phhheeeeew." I said, unimaginably relieved.

Dr Zimbler continued his thorough evaluation.

As he finishes, I stand beside him while he writes up his examination notes.

"His tone is much improved!" he says to me. "Everything looks good, really, really good."

As he says this, he places his hand on my shoulder and says to me,

"Good job!"

Those two words coming from Dr Zimbler and his unusual show of affection, meant the world to me. This highly respected and intelligent man who typically is "all business" took the time to warmly let me know, that I was doing a good job.

As a parent of child with special needs, I find there are very few folks in my personal life who tell me this. And since this is now pretty much my only job in the world.... Dr Zimbler's tenderness has meant the world to me.

The Gory Ghoul Who Wasn't

2011-11-01T11:46:00.002-04:00

Like most younger brothers, Nicholas wants to be just like Weston.

Lately, he has been copying his older brother's speech, mannerisms and favorite expressions. I was caught somewhat off guard the other day when Nicholas, in a moment of anger, folded his arms firmly across his chest and told me:

"I am not taking any more of your crap."

I tried very hard not to laugh, listening to my loving, young son practice the fine art of becoming a teenage smart mouth. But Nick's gentle nature is not easily subdued and it isn't long before I hear,

"I'm sorry Mom."

So, I guess it's not surprising that on Halloween night, Nicholas once again looked to his brother for cues.

Weston, now entering his teenage years, is all about "the gore". He embraces the world of blood and guts, skulls and bones and artificial weaponry.

This year, he decided he would be the villain from the movie "Scream". We bought a mask, and a fake bloody knife and he was good to go.

Nicholas.....seeing his brother decked out in such macabre gear, decided he too would don the clothing of a maniacal killer. He abstained from wearing the skeleton costume he chose to wear this year and decided instead to dress in the ghoulish mask that Weston wore a year ago.

Nicholas has many sensory issues, so wearing a plastic mask over his head for the entire night was nothing short of miraculous. But there was something wrong. He seemed to be struggling with his brave decision to dress as a devilish demon of the dark. This outer "killer" dress wear was so dramatically opposed to his kind inner nature. He seemed uncomfortable wearing it. The scary brutal outside camoflauging the warm and tender heart inside.

As we took pictures and gathered our necessary trick or treating supplies, Nicholas became very quiet, struggling internally with his bold decision.

"Nicholas, do you have your flashlight?" I asked, trying to distract him from feeling uncomfortable.

"Yes," he replied, using only one word to answer me. My plot to relax him doesn't work so I try again.

"How about your treat bag?" But my result is still the same and he answers with a solitary...

"Yup."

We start to head out the door, Nicholas still unusually quiet and lost in his thoughts. I can swear I hear his brain fighting with itself. We get to the bottom of the steps and walk halfway down the walkway when Nicholas suddenly freezes in his footsteps.

"WAIT!" he shouts. "STOP!"

"What is it Nicholas?" I ask, certain that he has changed his mind about wearing the mask.

"I forgot something!" he explains.
"I need to go get my Dora lunch box!" and he runs back in the house.

The gory ghoul, whose creepy face is covered in blood now comes out of the house clutching his pink Dora lunchbox.

"I'm ready now Mom," he tells me.

My brave son's internal struggle is finally over, as he has masterfully thought of a way to embrace the blood and guts of boyhood and brothership while still being true to his own sweet self by using a precious tool that gives him some much needed comfort.

We got a lot of interesting looks walking through the neighborhood dressed as a gory ghost holding a pink Dora lunchbox......but isn't that what Halloween is all about?

Nicholas not quite ready to embrace Weston's enthusiasm

Snowliage

2011-10-30T11:35:00.001-04:00

For the first time that I can remember, the New England area has received significant snow before Halloween.

Usually, I would be ecstatic about such an historic event, but this year, I feel like I am still recovering from the long, cold, endless winter of last year.

Here in our area, we received about 4 inches of plowable snow.

This is certainly not a major snow event for this part of the country, but because most of the trees still have their colorful leaves still attached, there are a lot of limbs and branches down in our town. We lost our power from 11 pm until about 4 in the morning.

Our poor apple tree

There is, however, one person in our household who is very, very happy about the early snow.

Can you guess who it is?

That's right, it's Nicholas....who, of course, was able to enjoy the first "fire" of the season!

Bathroom Talk

2011-10-28T13:17:00.000-04:00

Children diagnosed with Prader Willi Syndrome often suffer from low muscle tone. In my son Nicholas, this weakness effects more than just the strength of his muscles, it also effects many of his internal systems, things like breathing, digestion, even his heart rate.

It also effects his intestinal tract. Constipation and difficulty in his ability to "go" are some of his more common ailments. Please pardon the bathroom talk...

As a result of this slowed elimination process, Nicholas spends a lot of time just sitting in the bathroom. Now, for my son Weston, this would be a huge problem since sitting still for any length of time is nothing short of torture for him. But for Nicholas, spending time alone in the bathroom has become one of his new favorite pastimes. It is his own private oasis, a quiet place to sit, talk, sing and enjoy his own company.

Today, Nicholas and I have just returned from an appointment with his orthopedist. We enter the house and Nick announces he needs to go to the bathroom. He has acquired this interesting " I gotta go" announcement behavior from Weston, who for some reason feels compelled to formally announce to me every time he needs to go to the can. Why, does he do this, you ask?... I have noooo idea.

Anway, Nicholas goes into the bathroom while I start to prepare lunch. When I hear....

"Da da da da Dora......Dora, Dora Dora the Explorer..." The sound of soft singing drifts merrily from behind the bathroom door.

"Swiper no swiping..." he sings, scolding the poor imaginary fox.

Then suddenly the singing stops. I hesitate for a moment before smearing peanut butter quickly on his sandwich.

I listen closer. The sound begins again only this time I hear conversation.

"Hey Tommy, we need to change his dipeeee." He says

"What do you mean WE?" he answers.

And I realize he is now reciting one of his favorite scenes from Rugrats. The conversation continues for a good five minutes. He is comforted by the familiarity of this repeated scene. Suddenly, once again, the conversation stops.

It is quiet for a few seconds....I walk slowly over to the bathroom door to listen.

"I am Lightening! Lightening McQueen....rrrrrrccccckk!" shouts the talking red plastic race car that I assume was left abandoned in the bathroom from a previous "Nicholas" visit.

"Vvvrrooooom, vrooommmm, kachink!" the cocky race care exclaims, Nicholas giggles hysterically.

Then, once again. Silence.

Not wanting to disturb my son's amusing pantomimes, I hold back my laughter and peak inside the crack in the door where I see Nicholas sitting on the toilet now looking at his reflection in the window on his right. He is beginning a conversation with himself while simultaneously watching the movements of his mouth in the window.

"We need to find the troll bridge," he says, "Can.....you.....find..... it?" he asks and begins gesturing with his hands, pleading with himself to find the bridge. He is continuing to watch himself in the window and is enunciating each word very slowly. He moves his head left to right, studying the variety of expressions he is exaggerating on his face.

Suddenly, he turns toward the door. I pull my face quickly back, hoping he hasn't seen me.

Again, there is silence for a moment as I stand motionless behind the door, holding my breath.

Slowly the soft singing begins again as I hear Nicholas start to recite the rainbow song.

"Red and orange, green and blue, shining yellow, purple too. All the colors that you seeeeee......."

He holds the seeeeeeee for a few seconds and continues,

"Live up in the rainbow!" He finishes the song and claps his hands.

Nicholas has now been in the bathroom for 15 minutes. I am about to knock on the door to hurry him along, when I stop myself.

I reflect back to when he was a baby and how his low muscle tone had made him tire when he drank from his bottle. Doctors used the term "failure to thrive" and he was placed on a feeding tube. He was called a slow feeder. I worried that he would not gain any weight.

When he was two years old, he finally learned to walk. He was called a slow walker. I worried that he would never walk.

Speaking, writing and running all took longer for Nicholas than most children. He was called a slow starter. I worried that he would never learn to do any of these things.

At first, Nicholas's delays, his slowness to acquire skills, made me concerned and anxious. To me, the word "slow" was synonymous with "worry". It was a disturbing concept.

But today I realize that once again my son has taught me to embrace that which I fear. He has taught me to value the beauty of slow.

He lives his entire life moving slowly and deliberately, enjoying every moment of his life. He is on his own schedule. He embraces that extra time he needs to do things. He never worries about wasting time or getting there fast. He lives in the moment. He creates enjoyment out of the most mundane of everyday tasks. He performs these tasks while singing, dancing, loving and just living.

I decide not to knock on the bathroom door. I go back to the kitchen to continue listening to my son's delightful bathroom antics. I am listening to him enjoy his life. As I listen, I too laugh and enjoy my life just a little bit more.

I return to making Nicholas his lunch, only this time, I take my time. I make his sandwich slowly and deliberately taking time to stop and smell the peanut butter.

Click here to visit me today at Hopeful Parents

Does She or Doesn't She?

2011-10-26T16:18:00.000-04:00

Tomorrow, I will take my 79 year-old mother to the Neurologist where he will determine if she has Parkinson's Disease.

After reading much about this illness, I am surprised at the similarities of symptoms my mother also possesses.

Depression

Anxiety

Dementia

Pain

Tremors

Muscle stiffness/achiness

Slow limited movement

Vacant facial expression
Shuffled walking
Slurred speech
Small cramped writing
Restless leg syndrome
Fitful sleep/dreams

I am even more surprised that none of her doctors, primary physician, psychiatrists, ER docs, pain management specialists, etc ever suggested she be evaluated.

I am hesitant but anxious to learn the truth. If she does indeed have Parkinson's Disease, perhaps there is a medication that will help us in treating the debilitating symptoms....especially the pain.

I am not looking forward to the difficult job of getting her there... the wheel chair, the anxiety, the forgetfulness, the tremors....but I think I may actually be relieved to finally know the answer.

Until tomorrow.....

I Could Have Danced All Night...or at Least for 45 Minutes

2011-10-22T12:18:00.000-04:00

Well, he did it!

Weston survived his first middle school dance. Pheeeewwww.

I am very proud of my son. But not for the reasons you might expect!

Yes, I am proud that a pretty older 8th grade girl asked my son to dance with her and her friends.

Sure, I am proud that he said "yes" and danced happily with these girls.

He was even brave enough to take a turn in a dance-a-thon. Several young boys highlighted their dancing prowess in the center of the cafe. Many students surrounded these boys as they each took a turn "strutting their stuff". Brave, eager Weston took his solo turn amidst the center of the cheering crowd and boogied to the beat of some funky techno sound. To his pleasant surprise, it was his own classmates the...7th grade girls who encouraged this dancing fool and cheered and cheered for Weston. Not wanting to be outdone by the 8th graders, I believe the girls in Weston's class are seeking to recover, that which they lost.....dear Weston!

But what I am the most proud of is the simple fact that Weston knew when it was time to come home.

He became very over heated by his dancing exposee. By this time of night, all of Weston's ADHD meds have left his system. This medication purge is necessary so that it is possible for him to sleep. Unfortunately, it also leaves him very vulnerable to improper bursts of impulsivity. His mood is disturbed by things like loud noises and over heating. Typically, in the past, he has just lashed out at others during these times and alienated himself by exhibiting this bizarre behavior. This year at school, however, he has been working closely with his new aide to learn the skill of self advocacy. Knowing when to ask for help or when to remove himself from uncomfortable situations.

Last night, Weston, removed himself from the dance before he acted improperly. And although he only spent 45 minutes at the dance, it was a very good 45 minutes. And for that I am the most proud.

Dad was waiting patiently in the parking lot and was there to whisk Weston home when he was ready.

Of course I ruined it all when I heard the car return so quickly.

Inappropriately, I asked,

"What happened?"

Since they were home so early I assumed (making an ass out of just me) that things went wrong. It was a terrible mistake. Weston, who had worked so hard at the dance to keep it all together, now exploded.

"Mom, why do you have to ruin it!" He screamed and ran off into the living room.

My husband rolled his eyes and looked at me.

"I don't understand?" I asked.

Pete very patiently explained to me how Weston had determined on his own, that he had had enough. He was tired and could not stay at the dance any longer.

"I'm sorry Weston," I said. "I am glad you had a good time and more importantly I am glad you knew when you needed to come home."

He relaxed, said he was sorry too, and sat in the living room to watch tv with Dad, needing some quiet time to regroup and calm his emotions before going to bed.

It wasn't until this morning, that I was able to carefully extract tiny bits and pieces of his adventures at the dance. Of course, not all at once...but carefully timing my questions at long intervals apart.

I did manage to discover that Weston's new friends were sad when he announced he was leaving the dance. Leaving a social situation on a positive note is a healthy "first" for Weston.

Yes, today he is feeling happy and secure. He seems to be walking a little lighter and taller and smiling a lot more.

I am very proud of my son.

He was successful at this important social function. And for the first time in his life, it was he who saved himself.

Dancin' Machine

2011-10-21T20:10:00.000-04:00

All week long Weston has been anxiously awaiting the dance.

It is finally Friday and my young son is ready for this important rite of passage.

He has carefully selected his wardrobe.
He has showered...twice!
He applied sweet smelling underarm deodorant.
He put on a Comcast music station and practiced his moves to a variety of hip hop, hard rock and popular favorites.
He selected Dad as his chauffeur for the evening.
He reluctantly allowed me to take a few quick photos before leaving....

Ready to go

Some practice moves before leaving

He is ready!

I am not!

Will let you all know how it goes.....

Mom, Look out for the Chicken!

2011-10-20T09:08:00.001-04:00

It is pouring rain and Weston and I are driving to the elementary school to pick up Nicholas. I am driving cautiously, the "possessed wiper blade" incident still fresh in my mind, when Weston shouts,

"Mom, look out for the chicken!!!"

"What?" I ask incredulously.

Now, keep in mind, we live in New England, not the Midwest. There are no hen houses in our neighborhood, no barns, no silos, no fields of corn! And while there have been many instances where I have had to slam on my brakes for things like skunks, raccoons, squirrels, chipmunks, and the occasional deer, I have never had to swerve to miss....a chicken!

But sure enough, my observant young son is correct. I slow my vehicle to a complete stop as six red hens start to cross the wet street. The car behind me beeps impatiently, unable to see the line of feathery fowl passing in front of us.

"Chickens? Really?" I ask to no one in particular.

"Cool!" Weston says, as we wait for the last confused and somewhat startled bird to decide to cross. She is frozen in place and reluctant to cross in front of this large, shiny SUV predator. I inch my vehicle slowly forward. She now decides to dart suicidally in front of the moving car. I stop again to let the poor panicking poultry pass.

The birds gather into the yard of a very concerned man who comes quickly out of his house to round up his herd of hurried hens. I laugh out loud at the unusual sight.

"What do you think of all that?" I ask Weston.

" I dunno," he says, "do you think it means something?"

"Well, I have heard that when a black cat crosses your path it's bad luck. But I have never heard of what it means when a chicken crosses your path. But it seems kind of silly, so I guess it must be a good sign."

"Why do you suppose they did that?" he asks.

"I don't know," I reply, "either they are very brave or very dumb."

"No Mom, Weston smiles, "They crossed the road... to get to the other side!"

He is now holding his sides and howling with laughter, and I wonder who is more dumb, me or the chickens?

Chicken/Hen's Wisdom Includes:

Power of voice
Understanding language
Pecking out the answers that escape others
Awakening powers at sunrise
Protection of family and community

The Long Road to ADHD Medication Management

2011-10-18T17:15:00.002-04:00

My son Weston entered into the world with a 400 horse-powered engine revving in his chest. From the moment he was born, his restless spirit has been stuck in overdrive. While other children play quietly with themselves, my son struggles to control his impulses, his emotions and his body. Like a white tornado, my son is spinning his way through life, a whirlwind of unbridled energy and emotion, and wherever he passes, chaos seem to follow.

He lacks social skills and does not understand the boundaries of his body and often invades the personal space of childhood friends and play dates. Other children are turned off by his bouncy energy, constant interruptions and noticeable immaturity. He is shunned by his peers. They do not want to play with this rambunctious hellion.

Teachers were frustrated with his inability to sit still or raise his hand before speaking. He was constantly reprimanded. Often singled out by teachers as the disruptive child in the class, he became alienated from his peers, his precious self esteem began to erode. Birthday party invitations became fewer and fewer until finally they stopped altogether.

I watched my son's happy, contagious and exuberant personality start to wither. His inner confidence disappeared as he began to believe his own worthlessness since he could not control his actions, moods or thoughts.

As his mother, I searched desperately for help. I tried every hyperactivity control scheme ever invented. I removed sugars and dyes from his diet. I gave him fish oil and vitamin/mineral supplements. I read books, and articles, purchased meditation tapes and cd's on how to control your hyperactive child....nothing worked. I began to question myself. Was it my parenting style, was I too permissive, too strict, not consistent? I began to feel like I had failed my son.

It was then that I spoke with Weston's pediatrician, who suggested we try medication. Ritalin was our first trial medication. We titrated the dose up and up until finally we had success. Weston was happy and calm, his restless engine now idled in low. He became successful in school. His grades improved. His once familiar happy spirit had returned. He finally felt good about himself.

But Weston's body is like a freight train, his belly full of a raging fire that burns quickly through food and medicines. The success we had with medications lasted only a few hours. It wasn't long before Weston's impulsivity reared its ugly head again. We tried long-acting ADHD medications. Medicines guaranteed to last 12 hours. But for Weston, they were only effective for about four. We could not find a medication that would get him through the 6 hour day of school.

Finally, our only option was to give him two doses of meds during the day. This did not please Weston since now he had to go to the nurses office every day. Once again he felt like an outcast. Other kids teased him about his daily visits to the nurse.

It was also difficult to get an even dosing of appropriate medication into Weston's body. Too often the morning med would burn off too quickly and Weston would experience a "coming down" of the medicine. Then once he received the second dose, he would experience "a going back up". We just couldn't find a consistent and effective dose for Weston. We did not want to increase his dose since he was already on such high levels of medication and he is still a young boy.

This week we have started a new form of medication delivery. It is an ADHD patch. Instead of going through the digestive system, the drug is delivered through the skin, and directly into the blood stream. It is guaranteed to be effective for 9 hours.

We started the patch last week and I am happy to report, so far so good. Typically however, with Weston it can take a few months before we know if it will work for the long term.

Things have been going better at school and his moods seem much more consistent. So far, he is covered the entire day. The only problem now is getting it on him in the morning. Often he wakes up grouchy and lacking patience. It takes time to place the patch effectively on his body and without medication this is not an easy task. Still, I am hopeful for Weston.

More of My Mother's Pain

2011-10-14T10:40:00.000-04:00

My father passed away twelve years ago. Shortly afterwards, my mother was diagnosed with dementia. Since then, I have watched her slowly deteriorate mentally, emotionally and physically.

One of her ailments is spinal deterioration which causes her to be in pain. We treat this pain by visiting with an anesthesiologist at a Pain Management Clinic. Massachusetts law dictates that we must physically pick up narcotics prescriptions at the physician's office every month. Thankfully, her doctor agrees to give her two months at a time so we see him every other month. And while the treatment plan is indeed helping to manage my mother's pain, getting her there is another story.

She has difficulty walking now so I transport her by wheelchair. The wheelchair is heavy. I lift it in and out of my vehicle several times during our trip. I also must remember to bring her afternoon anxiety medications.

This week....I forgot.

As I maneuver her into the Pain Clinic, we discover that the doctor is behind schedule. This is a problem for me since I must transport my mother back to the assisted living facility and be back in time to pick up my children from school. As I mentioned, I have also forgotten Mom's anxiety meds so waiting in an office will no doubt start to upset her. This is not good.

After about an hour, the doctor sees her. He has his back toward us and is entering Mom's information into the computer. My Mom is now very anxious. She starts to develop some disturbing shaking movements. I can only describe them as Parkinsonian-like. Her left leg starts to shake uncontrollably, her right arm starts to flail. She can't stop it and she begins to cry.

"What's wrong Mom?" I ask.

"I can't stop it." she says with tears now streaming from her eyes.

"Has this happened before?" I ask her.

"Yes," she replies.

"Do you remember when?" I ask.

"I can't remember," she answers and I am not surprised since dementia causes memory loss. And yet, despite her difficulty remembering things, she is acutely aware of this disturbing new ailment.

I think maybe if I stand her up, this involuntary movement may stop. I try to help her to her feet, but she drops immediately back into her wheelchair.

The doctor, still with his back toward us, is completely unaware of what is going on. He finally turns around and is confused why my mother is crying. I explain what happened and he tells me I need to bring her to her primary doctor. Once again, this is not good.

Mom's shaking and crying continues. I try to get out of there as soon as possible. I feel helpless and angry, unable to comfort my mother and soothe her pain. I am powerless and sad. I am angry at the doctor and his indifference. I do not want to cry and upset my mother even further but inside I am sobbing, questioning God why he is doing this? What purpose can this possibly serve? Why must my mother suffer like this?

I try to whisk her out of the office, but she tells me she needs to go to the bathroom. We have just gone 5 minutes ago and I wonder if this is a side effect of the tremors. We get to the bathroom and I notice she smells like urine. I believe she has lost control of her bladder during the episode. I help her to wash.

When we finish, I hurry her into the vehicle and back to her room as quickly as possible. I am running out of time and need to go pick up Weston and Nicholas.

As I wheel her into the facility she says,

"It feels like I have been away for a year,"

"Well, after what we went through, it is no wonder you feel that way," I whisper to her.

"Oh, why what happened?" she asks and for the first time in twelve years, I am thankful for her memory loss.

I leave the assisted living facility but not before informing the staff of her shaking episode. I ask them to observe her and watch for any more tremors.

I pick up both of my children from school and return home to call my mother's psychiatrist. I describe the tremors and accompanying incontinence. We carefully review my mother's medications. She explains to me that this episode is not a side effect of her medications. It is yet another symptom of her dementia. Parkinsonian-type tremors can occur in patients diagnosed with this illness. Or, she may be developing Parkinson's Disease itself. She explained that it may worsen over time. She suggested we see a Neurologist.

I am not ready to hear this. My mother has been suffering for so long. She does not need any more pain or another diagnosis. I realize at this moment, that I am forgetting who my mother was before her illness and I am saddened even more.

Just then, my husband Pete comes home from work. He places his hands around my waist, gives me a warm and tender kiss and says,

"Happy 15th wedding anniversary my darling wife."

I am overcome with emotion....and start to sob.

Mom and Dad newly married

The 8th Grade Girls

2011-10-13T19:20:00.000-04:00

Weston is in 7th grade this year. We revised his schedule and eliminated some of his specials, like art and music, so that he has more free time during the day to complete his homework assignments and receive extra support in reading and math.

Because of this schedule change, no 7th grade gym classes were available to Weston. Gym class is very important to a child diagnosed with ADHD. It helps him to release his excess energy so he is better able to concentrate during the day.

So, instead, Weston takes gym with the older 8th grade class.

These young teens are completely unaware of the struggles Weston has had in previous school years. They have not witnessed his impulsiveness and difficulties sitting still during class. They have not heard any teacher demean him for behaving poorly, fidgeting or forgetting his supplies. To them, Weston is no different than the average 8th grader. They see him as one of their own.

Except that is..... for the 8th grade girls......they see Weston as something more.

He is the mysterious one. The handsome new face waiting to be discovered. They are genuinely interested in understanding more about this tall, quiet, charming young middle school boy.

To Weston, the 8th grade girls are his new friends. They are very tolerant of his high energy and social awkwardness. He feels comfortable chit chatting with them and helping them open their stuck locker doors. He enjoys being surrounded by these approving and pretty young girls.

Today, during lunch, Weston decided to sit with his many new friends and unashamedly took a seat at the 8th grade girls table. They welcomed him whole heartedly, each eager to have the handsome new boy sit next to them.

As Weston chatted and ate lunch at the "babe" table, you can imagine the surprise of the 7th grade boys! They nearly choked on their pizza's as they watched in horror as Weston easily schmoozed his way into the good graces of these lovely older women.

Finally one of his peers was able to build up enough courage to pass the table and say:

"Way to go Weston!"

As we sat around the dinner table tonight discussing Weston's great day at school, he said,

"Mom, you should have seen it, all the boys were sitting at their table with their hands crossed over their chests. Why were they doing that?" he asked me.

"Why do you think they did that?" I asked.

"Cuz, they were too scared to sit with the girls?" he asked.

"Yes, Weston, I think you are right."

He smiled feeling very pleased with himself and his new celebrity status.

I am so thankful for 8th grade girls.

Buzz Cuts

2011-10-09T17:41:00.001-04:00

In the Words of Mark Twain...

2011-10-08T08:48:00.000-04:00

"If you don't like the weather in New England, just wait a minute."

We woke up yesterday to temperatures in the 30's. We donned on sweatshirts and long pants. We put on our house heat and celebrated the arrival of fall in New England.

But today it seems that Mother Nature has changed her mind and is holding on to summer for just a little bit longer. Temperatures today are expected to be in the 80's, with a record temp of 84 to be reached by this afternoon.

This extreme fluctuation of temperature is fairly common during the changing of seasons, but it sure makes it difficult to determine what to wear each day. Tuning in to local weather reports is a must for residents here since wearing a sweatshirt when it is 84 degrees is not such a good idea.

School Pictures

2011-10-07T09:39:00.000-04:00

Weston Grade 7

Nicholas Grade 4

This is not his school picture

They haven't come in yet

I just jove taking pictures of him in his new glasses

A Parade of Aides for Nicholas

2011-10-06T12:40:00.004-04:00

It is only the second month of school, and Nicholas now has another new aide, his third for the year.

It has been like a parade of aides.

As I mentioned in a previous post, Nick's current aide, Ms. S caught the eye of the principal. I knew it would only be a question of time until she was snatched up. She has indeed moved on to another new position at the school. We are disappointed. Although Ms S knew Nicholas for only a few weeks, she really understood him and was able to motivate him to do his work.

The good news is I am happy to report that Nicholas has scored once again. Yes, the paraprofessional Gods are truly smiling down upon my young son this year...as he once again is paired with another "keeper".

Paraprofessional Ken

His new aide's name is Nate and he is a super cool twenty-something young man. He is handsome, athletic, happy, kind and very gentle. He is studying to be a special needs teacher. He coaches kid's soccer and was a junior varsity coach and paraprofessional last year in the neighboring town.

And get this.....he actually looks a lot like Ken, Barbie's main man. However, unlike our experience with Barbie, I don't believe he will bail on Nicholas. Nate seems to possess a very warm heart.

Weston almost passed out when he saw that lucky Nick had landed such a cool, hip dude for an aide.