Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 12, diagnosed with Prader-Willi Syndrome and Weston 15, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living...a life less perfect, a life more meaningful.



Thursday, October 30, 2014

Slow Motion Mothering

I am a fast moving kind of a gal.

I like to go, go, go and get things done, done, done.

I like making lists and checking things off.

I guess it would be safe to say that I am most happy when I am moving.

But this fast moving, freewheeling, on-the-go lifestyle is not very conductive to raising children diagnosed with things like sensory processing disorder and poor motor planning issues.

In fact, I have discovered, somewhat reluctantly, that raising my children is all about learning how to slow things down, way down. It is a painful life lesson often delivered to me with blunt force trauma to the brain.


But applying the brakes has never come easy for me.  For a long time, I resisted this notion of slow motion mothering. I continued to run faster than a speeding bullet, slowing my pace only slightly as I dragged my overwhelmed children from one chaotic event to another.

I was surprised, even angry, when my children began to scream and cry.

I thought at first, that the trouble was them.

What I have learned most recently..... is that the trouble is me.

As many of you know, Nicholas has been diagnosed with Prader Willi Syndrome. Many individuals diagnosed with this disorder are also diagnosed with dyspraxia.


Dyspraxia is a developmental coordination disorder that causes weakness in comprehension, information processing and listening.
 
It is a disruption in the way messages from the brain are transmitted to the body.
 
Often children diagnosed with dyspraxia also have issues related to the processing of sensory information. 
 
 
Too much sight, sound, smell, touch or taste information delivered too fast to the body overwhelms the brain resulting in emotional overload.


What I have learned is......this behavior is not telling me ...."I want to be defiant"

It is telling me.........."I'm overwhelmed"


Slowing things down and minimizing the amount of sensory input is crucial to enabling my son to be successful in this world. It enables him to enjoy loud events, boisterous activities and large crowds.


As a mother of a child diagnosed with this condition, my responsibility is to slowly build Nick's sensory endurance. Introducing events and new experiences slowly, building each time in intensity so that he can finally begin to function and relate better to our fast-moving world. This is a necessity if he is ever going to be able to live on his own, go to school or secure a job.

And so it is with much difficulty that I am learning how to slow down the eager speed demon.


Now if I can just get the rest of the world to understand this important lesson.

Friday, October 17, 2014

Fast Cars with Names that End with the Letter "i"

Perhaps it is the rocket fuel that runs through his veins or the heavy metal revving of his own internal engine that has created, in my teenage son, an ingenious ability to identify the exact make, model and year of every glittery, gleaming sports car we happen to encounter on our daily travels.

What is it about the brains of boys that inhibit them from remembering things like math facts or spelling words but seems to allow them easy access to an endless amount of useless sports car statistics?

"Look Mom, a 2013 Lamborghini Veneno!"  Weston shouts as if Tom Brady was magically sprung from Gillette Stadium and tumbled onto our windshield.

Several times, I have had to slam on my brakes, certain from Weston's exuberant tone, that I have just run over some poor, unsuspecting pedestrian.

"Weston, can you tune it down a notch? I almost sent us all through the windshield." I shout.

"Sorry, Mom," he says, craning his neck to get a lingering, last look at the flaming red roadster.

"Aww man......" he says in a tone of adoring adolescent admiration, "I would love to drive that."

In fact lately, Weston has become somewhat of a expert on fast cars with names that end with the letter "i"

I am sad to report that the sturdy, yellow toy trucks and shiny matchbox minis  that once lined our living room floor are gone, replaced now with a newer and faster breed of colorful, sleek-bodied hot rod.

Yes, those familiar toy truck makers we have grown to love over the years, like Tonka, Bruder and Hess have seemingly transformed overnight into the sexy, multi-syllable foreign car manufacturers of Bugatti, Maserati and Ferrari. Not to mention, his personal favorite, the Lamborghini.

I suppose, in the world of boys, it is the natural progression of things

It starts with Matchbox, progresses to Tonka, transforms into Maserati until eventually they are distracted by other things with features more alluring than alloy wheels and fuel injected carburetors.

Other things that are also shiny and red.

Thursday, October 16, 2014

No Time for Self "Anything"

As a mother of a child diagnosed with complex medical issues, self pity is not a luxury I can afford.

Wallowing in the feelings of loneliness, sadness, bitterness or disappointment is like neglecting the profuse bleeding from a mortal wound. It quickly drains the precious energy and strong life force I so desperately need to sustain myself so I may carry on bravely and continue the ferocious battle I fight for those I love.



In fact, self "anything" is a dangerous distraction to the intense level of focus that is needed to parent my children well.

One day of bleeding or emotional self indulgence is all the time that is available to me, and then it becomes necessary to bandage the wound and allow it time to heal on its own. Further wallowing becomes self destructive, not conducive to the bright, clear and highly tuned attitude needed for effective soldiering.

So, in an effort to bravely carry on, I have begun the planning of our annual Thanksgiving excursion.

This year, we are going to try something new.

I am not going to tell you where, just yet.

But I will give you a hint and tell you that it possesses all of the Peters family prerequisites for a relaxing get away:



 
And of course to Nicholas, (and the rest of us now)
No vacation would be complete without one of these:
 

 

Wednesday, October 15, 2014

A Hero's Plea


I am tired of fighting for everything

I am tired of feeling alone

I am tired of being the superhero

nobody sees

I want to scream

can't you see me

and plead through my weeping

for you to find courage

 to sit beside me

and reach gently for my hand


Monday, October 13, 2014

The Boy Beneath

I have been thinking a lot about the upcoming drug trial for Nicholas.

I have been thinking about food, and insatiable appetites and how my son is plagued every single moment of every single day with the uncontrollable thought of food.

I have been thinking about what Nicholas will look like when he is finally free from this overwhelming obsession. 

Who will he be once this demon of a disease is exorcised from his body and mind?

All of this thinking has made me realize that.....in the twelve years I have been raising my son,

and the battles we have fought to keep him away from food

and the distractions we have created to keep his mind focused on the world around him....

 Without this life-threatening obsession with food.......

I do not know who my son is....



I do not know the boy beneath.

I am anxious to see him.



And if this drug trial falls short of reaching this goal,

Still I believe.

We are getting close

and for the first time in a very long while........

I have hope.


“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -
And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -
I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.

-Emily Dickinson

Saturday, September 20, 2014

A Very BIG Decision


OK, so remember what I told you about special needs parenting and BIG decisions?

It's been what....maybe 24 hours? And already I am faced with a decision that may alter the course of my son's ongoing battle with the ferocious hunger and obesity symptoms associated with Prader Willi Syndrome.

Yesterday, Nick and I met with Dr. Stafford, a Children's Hospital Endocrinologist and good friend. Yes, "good friend". Nicholas has seen her once, every four months, since the day he was born, which is more than we see some of our own family members. You get to know a lot about a person when you see them this often.

Anyway, she has been asked to participate in a Clinical Trial for a potential new drug designed to target hyperphagia (uncontrollable eating) and obesity, both severe issues that plague individuals diagnosed with Prader Willi Syndrome.

The new drug is named Beloranib from a company named Zafgen. Initial results are promising and have been reported in the New York Times, click here to read.

Dr. Stafford explained that all of her patients diagnosed with PWS would need to be evaluated and questioned regarding their suitability for participation in this study. Based on our response to these questions, and Nick's height/weight profile, there may be a chance that he would qualify.

Say what?

Tears begin to roll uncontrollably down my cheeks.

I am overwhelmed with emotion, knowing that we are getting close to finding a cure for the uncontrollable hunger that plagues my son every single second of every single day.

I try to squelch my overwhelming elation for as every parent of every child diagnosed with special needs will tell you, when you are emotional, it is impossible to think clearly. And thinking clearly about something as important as this......is crucial.

My mind whirled and questions began popping up in my brain. How often would we need to come to Boston? How much blood work would need to be done?  How long is the trial? Is it an injection or a pill? When will this happen? How much school would he miss?

And perhaps most importantly.......what are the risks?

It is a lot to digest.

Participating in something like this will require a lot of our time and effort. Precarious drives into Boston every two weeks, lots of missed school, blood draws.....which, according to Nick, are worse than pulling fingernails. Nurses coming to our house to give injections. Nasty and potentially serious  side effects. And to top it off......there is a chance we could be one of the lucky ones who receive the placebo........!

Is this just more false promises or could we be a part of something very, very big?

I am hopeful, awed, concerned, scared, intrigued....and without a doubt emotionally overwhelmed.

I will need some time to make a very BIG decision.

Wednesday, September 17, 2014

A Good Decision and Another 6th Grade Presentation

I have learned that special needs parenting is all about making decisions.

Big decisions.

Not the "what am I going to wear today" kind of decision, but the kind of decision that can make the difference in the very quality of my son's life.

My ability to carefully consider options, weigh the good and the bad and make sound choices has a direct impact on the quality of my son's health and overall happiness.



Should I start my 4-month-old infant on growth hormone therapy, giving him nightly injections for the rest of his life?

Should I give him the 12 hour operation to correct his curved spine?

Should I have him participate in his graduation ceremony?

Should I keep him at the public school or send him to another?

Often, I am not entirely sure whether my decisions are good ones. Have I made his life better or worse?

But sometimes, just sometimes, I get it right.

And when I do......you can believe I am happy. Nicholas will start to shine, his happiness radiating brilliantly from his angelic face. The happiness I feel, seeing his peace; is one I can not describe.


I am happy to report that this year, I got it right.

If you are a long time reader of our blog, you may recall a few years ago when we moved Nicholas to a new public school. Here, he quickly learned to read. He was surrounded by some very unique educators. Brave, caring folks who were willing to go that extra mile to enable Nicholas to become wholly included in the public school environment.

You may recall these kind teachers asking me to speak to their students. Would I educate them on what it is like living with Prader Willi Syndrome? (Click here to read)

As a result of this special partnership and silent solidarity between parent, teachers and students, Nicholas thrived and from an inclusion standpoint, had one of the best school years of his life.

Mr. P's Homeroom Class

I believe that most special needs parents would agree that although academics is an important aspect of the school day for their child, what is MOST important to a child diagnosed with special needs is the feeling that they are an important member of their school community. That they are valued and included in what is going on around them. That they make lasting and quality friendships.

Achieving this is difficult however, and requires trust, respect, communication and the freedom of out-of-the-box thinking between parent and teachers. Strong bonds and a deeper relationship must occur between these on-board individuals.

Nicholas was very fortunate to find this last year, so much so, that I wondered if perhaps I should keep him another year in this same environment with these special educators?

I agonized over this decision but finally decided to make it happen.

Of course, as is the case with all things related to special needs parenting, I had to FIGHT. I had to dance and sing and slay.....doing everything in my power to convince administrators and Nick's IEP team that this choice was the right choice, the only choice for Nicholas.

After a hard fought battle and several unforeseen obstacles thrown unexpectedly in our way, it was finally decided that Nick would stay another year.

Hallelujah.

I celebrated.

Over the summer, however, the doubt that plagues every decision every special needs parent will ever make returned and I asked myself if I had made the right choice?

The world, however, quickly answered, squelching this doubt and extinguishing my anxiety.

Before school even started these unique educators met with me to discuss the inclusion plan for Nick. They were excited and animated, ready and willing to do anything to make Nick's year a successful one. They were eager to come up with new and exciting ideas for educating their incoming students on the importance of inclusion.

Immediately I knew..........I had made the right decision.

Last week, these teachers asked me once again to come in to speak with Nick's new sixth grade class.

I agreed whole-heartedly.

This time however, the children had been prepped. The now Prader Willi literate teachers had prepared their students, asking them to see with their hearts, guiding them to try to understand that despite Nick's differences, he is a student like any other.

It was arranged that Nick and I would speak on Tuesday.

The nervous knots and sweaty palms plagued me once again, reminding me of the humiliation and pain of high school speech class, my brain whirled out of control.

Would these students be as welcoming as the last?

Would they get bored and fidget?

Would they be mature enough to understand Nick's hardships?

But as I spoke, my fears were quieted. The bright, young faces stared directly at me. Their heads never turned. There was no fidgeting, no squirming, no looking out the window. These young children wanted to learn more. There were several who smiled at me. They were engaged and interested.

This time, Nicholas took a much more active role in talking to his fellow classmates. He jumped up several times and pointed to the screen, telling the children of his love for fireplaces and how this is the fire pit we used at the vacation house.

When Nick and I had finished speaking, hands flew up into the air. The children wanted to know more, only this time, they did not want to know more about PWS, they wanted to know more about Nick, asking:

"What's Nick's favorite color?"
or

"How many pets do you have?"

"What's Nick's favorite song?"

The questions were personal. And suddenly I realized that they could already see Nicholas. Not as a child with a scary disability, but instead as an interesting classmate, someone worthy of getting to know. These teachers had done their homework.

I know that Nicholas and I are very fortunate. That this type of magic does not occur often. That we have achieved a kind of classroom nirvana, a place where Nicholas is heartily welcomed and easily included into this special community. That these special educators are one-in-a-million...or probably even two.

How on earth do I thank them for this? How do you thank anyone for their humanness?

But there is one thing I can do.......I am going to enjoy every minute of this "once in a lifetime" year knowing that Nick and I are fortunate to be included in such a special community.

By far, this is one of the BEST decisions I have EVER made.


 Mrs. E, one of Nick's special teachers

Tuesday, September 16, 2014

Charlie-in-the-Box

I have two children diagnosed with special needs and although Nick's issues are extreme, and he is challenged physically, mentally and emotionally....it is my son, Weston who is the most difficult to see.


Weston suffers from the "invisible" diagnoses of severe ADHD and mild Autism/Asperger's. The symptoms of these diagnoses are behavioral, not physical in nature, so teachers and students do not understand why this handsome, young boy acts so quirky, unruly and difficult at times.

Because of some significant learning delays, he is often grouped with children, like his brother Nicholas, who are diagnosed with more noticeable physical delays. He spends a good deal of his day in this substantially separate classroom. He is not, however, upset about this placement. In fact, he enjoys his time in this nonjudgmental setting. Among these differently-abled children, he has emerged as their steadfast leader.

He is without a doubt.......Charlie-in-the-Box.


Charlie, you may recall, is the official sentry of the Isle of Misfit Toys from the children's Christmas special, Rudolph the Red Nose Reindeer.

Of all the castaway toys, Charlie-in-the-Box is the one who appears "normal". Although he is also afflicted with a significant difference, still, he acts as a leader and official spokesman for all of the misunderstood toys.

Weston is a lot like Charlie.

This summer, Weston participated, once again, in the Spotlight Program. This is a week-long program, offered by the local ARC, for children diagnosed with social difficulties. Here, they are grouped with other children who also suffer from poor social skills. With the assistance of hip, young counselors, these quirky kids learn how to relate better to other children and develop social graces.

This year, Weston was the oldest of the group, finding himself once again, in familiar territory.

But this year, something was different, Weston began to embrace his innate ability to lead this group of shunned and disregarded children.

I believe that children (and animals) can see into people's souls. Instinctively, they identify the few folks among us who possess kind hearts and gentle spirits. They naturally gravitate toward these caring individuals, basking in the company of these delightful and engaging individuals. Weston is indeed one of these lovable leaders that children can't seem to resist.

I notice that wherever we go......Weston seems to attract a crowd of faithful, young followers.



Like the Pied Pier of Hamelin, he easily lures a long line of small children with the beautiful sound of his magic flute.


 He creates interesting games and activities for the gang to enjoy and ensures everyone is behaving with kindness and a sense of fair play.

But I am, of course, Weston's mother. I wonder sometimes if I am seeing him with open and unbiased eyes?

So, I was pleasantly surprised, when over the summer, I received this evaluation of Weston from the Coordinator of the Spotlight Program.

"Weston was an active participant and valuable group member this week. Many of his peers gravitated towards his easygoing nature and great sense of humor. He joined in with the group and talked to familiar and unfamiliar peers easily, oftentimes discovering common interests. Weston was a natural conversationalist and was open about his hobbies and what his interests were. Many of his peers were excited to spend time with him and engage in conversation."
 
and then there was this.......
 
"I wanted to send you a note today about how impressed I was with Weston today. He was AMAZING playing mini golf today. It was a kind of crazy day, and he was so flexible and understanding. Once the game got going, he was so calm. Some of the kids were really struggling, and Weston was calm and so patient with all the kids. The most remarkable thing was all the kids were listening to him. Weston was telling them whose turn it was and keeping the rhythm of the game going in such a kind way. I was thrilled and so impressed. He is a really great guy!"

I do not know if it is because Weston is the sibling of a brother who is so medically complex, or if it is his own personal struggles overcoming an invisible disability and feelings of isolation that has made him such a patient, tolerant, kind and loving human being, an irresistible energy that brings much goodness to the left-behind children and misunderstood souls of this world.


I am anxious to see the man he will become.

Friday, September 12, 2014

A Much Better Version of the Lisa Train

With two rather extreme hiking expeditions under his belt, Nicholas decided it was time for the Peters' family to slow down our vacation pace and accommodate him for a change. He asked if we could take a ride on the Conway Scenic Railroad.

As a family, we often move too fast, our activities too extreme, for our slow-moving bear. In fact, apart from opening and closing the two garage doors at our rental home and lighting the gas fireplace in the living room, it was the only thing he asked to do during our entire vacation experience.

How could we refuse?


What is it about boys and trains? Both of my children enjoy this leisurely scenic activity. In fact, even the solemn Pete was excited to ride on the old fashioned choo-choo.

Having spent much of my time this year on the chaotic Lisa Train, this mild mannered and slow moving version was a much-welcomed alternative for me.

The folks at the North Conway Scenic Railroad in New Hampshire have revised several routes from the old Boston and Maine Railroad. Vacationers have a choice of three rides. There is a short trip to Conway, a longer one to Bartlett and a very long 5 hour trip to Crawford Notch which includes dining service.

Knowing Nick's unpredictable nature, we chose the two hour trip to Bartlett, pushing our luck just a bit. Pete and I both would have preferred the ride to Crawford Notch, a breathtaking adventure with lots of steep ravines and cascading brooks. But as parents of a child diagnosed with special needs our lives are not our own.

We arrive at the train station early in the morning. Built in 1874, this old fashioned depot has the look and feel of long ago. There is a large gift shop and several old photographs hanging on the walls. The floor boards creek as we make our way to the ticket window.


We purchase our tickets and wait out front for our train to arrive.

 
Nicholas studies his map of North Conway
and yes that's Pete smiling
 
 
So far, there is no sign of our motorized maiden.
 
 
Nick remembers to bring his trusty headphones
and places them over his ears.
 
 
Not a moment too soon as our loud locomotive begins to get...
 
 
closer
 
 
and closer
 
 
until finally the railway men begin to appear
 
 
and clamor out of this red and green beauty
 carefully placing wooden steps under the passenger exit ways
 
 
Pete and Nicholas climb on board and take their place in one of the open-air cars
 
 
Weston decides to sit a safe distance away from his embarrassing family.
Unfortunately however, his annoying mother finds him
sending him into an indisputable form of teen trauma.
If you have a teenager, perhaps you are familiar with this state of mind?
 
 
Our journey begins and it isn't long before the wiggly boy begins to enjoy himself.
Of course, I try to spare my self conscious son from further humiliation
by refraining from front facing photos. I take my pictures from afar.
We pass over the Saco River
 


Nicholas, on the other hand, is happy and inspired
unashamed of his embarrassing mother, at least for now.
 
 
The train ride rolls over another river
This one is the Ellis.
 
 
We pass several family campgrounds.
A railroad man provides us with commentary over a loud speaker
alerting passengers to the identity of each of our passing surroundings.
Pete is unusually mesmerized by the sights, sounds and movement of this interesting ride
 
 
And Nick?
Well let's just say, for him this was a much more enjoyable mode of transportation for viewing Mother Nature
His smile says it all.