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.



Tuesday, January 27, 2015

Snow Bands

I am happy to report....so far, we have power.

Hallelujah!

Thankfully, we did not receive the high winds that were predicted from this storm and that is a very good thing.

The snow however, is another story.

We have about 2 feet of snow right now and it is still snowing heavily. It is expected to continue throughout the day. I believe we may break a record in our area for total snow accumulation.

 
 
To continue on with my series: New England Meteorology Lessons 101,
I am going to discuss the meaning of the word, snow band.
Much like the phenomenon that occurs during a hurricane, nor'easters are swirling storms that contain bands of moisture.
 
 

See the heavily shaded blue areas on the map up by the Lowell area traveling down through Boston toward Providence? These are bands of heavy snow. Typically during a nor'easter they pass quickly through a town. This storm, however, is moving slowly, the band of blue has been stuck directly over us for several hours. Resulting in heavy snow accumulation, at least for us. Interestingly enough, a town that may be just 20 miles away (ie west of Lowell) is experiencing hardly any snowfall at all.
 
From a plowing and shoveling perspective, snow bands suck.
 
If it takes you 45 minutes to shovel your walkway, the area where you started shoveling now needs shoveling again. It becomes a no win situation. Thankfully it has been a very light fluffy snow, and fairly easy to move.
 Weston and I are taking turns with the shoveling chore.

Here are a few photos for you, These scenes will change quickly however, as we receive more snow throughout the day. I will provide more photos once the storm is over.
 


FYI...do you remember my post on "Plant Killer Pete"?
I am sorry to say....he's baaack.
I am puzzled by my husband's unique ability to kill off all of my most prized plant possessions.
I believe he has a sixth sense for it.
Do you see the shrub on the right?
Of course you don't, its covered under a wall of freshly plowed driveway snow...oy!
You may remember this poor shrubbery from my post about the Triffids?
 


We will see if it passes the Peters family test of die hard resiliency.

Monday, January 26, 2015

Ready

We spent most of the day preparing for the storm: batteries, flashlights, blankets, food, water, radios, cash and electronic devices. Gas for the cars, generator, chain saw and 4-wheeler. I covered our trees and shrubs and removed all of the snow from our back porch. Turned up the heat and fridge and filled the tub with water.

We are as ready as we will ever be. We are New Englanders and used to the drill.

The boys are excited. Schools have been closed for the next two days.

I am just hoping to keep our power for as long as possible.

The winds are expected to be at times, hurricane force...when you have high amounts of snow fall combined with such howling winds, you can expect to see a lot of photos in the next few days that are going to look alot like this.....



I will keep you all posted for as long as I can.

Sunday, January 25, 2015

Nor'easter Times Two

Mother Nature has been very kind to us this winter. We have had no major snow storms that dumped over a foot of snow. The kids have had zero snow days. It has been unusually quiet.

Well folks, all of that is about to change as Mother Nature is about to make up for lost time and unleash the full fury of her wrath.



If you are a long time reader of our blog, you may recall my previous explanations of a nor'easter and the powerful punch it packs as it pounds our northern coastal areas. These are intense snow storms that are able to bring a city to its knees, even one that is familiar with heavy snow removal.

Now let's talk about a blizzard.


A blizzard is like taking a nor'easter and combining it with a hurricane. To qualify for "blizzard" status a snow storm must be accompanied by at least 35 mile per hour winds sustained for 3 hours.



Holy shit, right?

Now, let's talk about an "Epic Blizzard". This is a storm that comes around once every 50 years. Snow totals are measured in feet, not inches....with winds gusts expected of up to 65 to 75 mph.

You may also recall from some of my previous posts, how we compare all of our whopper snow storms to the grand daddy of all time...."The Blizzard of 78" which brought the entire New England region to a stand still for over a week. Snowfall readings of 25 - 40 inches fell, wind gusts were reported up to 100 mph.


 



An epic blizzard is developing and will arrive in the New England area tomorrow night.

The current forecast calls for snowfall in the amount of 20 -30 inches with winds gusting 65 -75 mph.

Hold on to your hats folks, it's gonna be a beast of a storm.

We are performing the usual routines. I will keep you posted with info and photos, for as long as we have power.

If you live in this area....perhaps you are familiar with this guy....?

Sunday, January 18, 2015

A Special Day

Today is Nick's birthday.

He is 13-years-old.

Good Lord another teenager in the house! Don't know if I am ready for this just yet.

Anyway, in celebration of this special day, I decided to find a photo of Nick when he was a baby.

I found this one.

Somehow, it reminded me of the Harry Potter movies where the paintings come to life and begin speaking.  This one seemed to come alive. To me, this is the true essence of Nicholas. The old soul who looks directly into your eyes and asks:


Are you listening? Are you opening your heart to the love that is around you? Are you living in the peaceful present? Please, for God's sake......chill out and be happy. Life is too precious to waste, dear Mummy. Find your light.

It stopped me cold.
It put a smile on my face.
I remembered why he is here.

It is so often my children who remind me to stop thinking and start living. Like the flame that fires up the wick of another. Nick's positive energy is contagious, it burns brightly and can be at times, life changing.

 


Happy Birthday Dear Nicholas

Thank you for the light.


Wednesday, January 14, 2015

Really?

It has been back to reality this week, as I resume my caregiver responsibilities.

But the good news we received over the weekend from Nick's hospital stay has replenished my soul and breathed some fresh air into my lungs, rejuvenating my tired spirit. My load seems lighter as I carry on with my selfless duties with a smile on my face and a dance to my step.

Flash, our naughty cat, was due for his annual checkup. So yesterday, I packed him unwillingly into his kitty crate and headed off to the vet's office, whistling a happy tune.

At the clinic, the handsome young vet, examined the frightened feline.  He checked his eyes, ears and coat, but seemed to linger a little too long as he listened inside Flash's chest. Immediately my heart tumbled down into my stomach as a dreadful familiarity hijacked my happiness with one swift, heavy blow.


"It sounds like Flash has a heart murmur," the vet stated directly. "He will need to have some further testing to determine if it is a harmless condition or something structural that may require advanced medical intervention. I suggest he receive an ultra sound."

I must admit, at this point, I almost laughed out loud at the absurdity of my life but thought better of it since the gentle vet would probably question my pet caring capability, not to mention my mental stability.

I thought of my children's attachment to this cool little kitty and the pain they would feel to lose him as the young man began to explain the ultra sound procedure to me. I told him with a smile, that it was not necessary for him to continue since I am the parent of two children who are medically complex and had in fact just returned this weekend from a visit to Children's.

The vet smiled compassionately. He cut immediately to the chase and told me it would cost around $350 to perform the test (not exactly chump change) He said it was not an emergency and we could certainly wait six months or so before performing the procedure.

At this point, I did not know whether to laugh or cry at my interesting predicament. It is clear that for some unforeseen reason my role as selfless family caregiver must continue at break neck speed with no reprieve possible. There is something more I need to learn.

But really.....I can't help but wonder......WTF?

Enough Already

Monday, January 12, 2015

Finding Courage


You gain strength, courage and confidence
by every experience in which you really stop to look fear in the face.
You must do the thing you think you cannot do.
-Eleanor Roosevelt
 
We have returned from our overnight stay at Boston's Children's Hospital.
 
I am happy to report that Nick's EEG was clear.
 
It was completely clear, with no sub clinical seizure activity noted.
 
This is the first time ever, since he was 5-years-old and diagnosed with Electrical Status Epilepticus of Sleep Syndrome, that his test was clear.
 
It is a humbling moment, a hard-fought defeat of a very formidable foe.
 
I am happy beyond words.
 
I am also inspired and in awe of Nick's bravery and resilience. Assisted of course, by his equally brave and always supportive older brother, Weston.
 
 
When we received the happy news, Nicholas said,
 
"Mummy, I made it. I made it through the pain."
 
And true to his spirit, throughout our stay, he never complained.
 
Not even once.
 
 He sought refuge from the simplest things.
 
 
like the colorful fish in the lobby
 
 
his stuffed dog Spikey,
his blue SpongeBob pillow
and the very cool pink backpack the hospital provided that held his leads.

 
He enjoyed pressing the button to make his bed go up

 
and pressing it again to make it go down

 
But his favorite part of our visit by far,
was the fine hospital cuisine and his favorite ice cream treat.
 
For me, this visit was about gaining strength from the companionship of some very special others.
 
Nick's Neurologist and our good friend, Dr. Takeoka, made a special point to come visit us on Friday evening after his busy work day. I do not have the words to express my gratitude for this support. His small gesture of kindness brought a bright, shining light of compassionate care into Nick's room, removing our fears and providing some much needed comfort.
 
I have commented often on this blog about the earthly angels that accompany us here on our journey to raise Nicholas. The enlightened doctors, therapists and teachers that stand beside us during our most challenging moments, alleviating our fears and calming our spirits. To us, Dr Takeoka is one of these special few.
 
Most importantly to me, was a visit from my brother, John and Courtney, my newly acquired sister. They sat with me and Nicholas, laughing and chatting and whiling away those lonely hours, prohibiting me from sitting alone beside Nick's bed thinking about the beast and empowering him by acknowledging his presence.
We were all so engaged in conversation, I neglected to take a photo. But I will be indebted to them always for the depth of their compassion and the strength of their spirits. To us, John and Courtney are valuable members of those special few.
 
I believe in the power of love.
 
The ability it has to brighten the spirit and heal both the body and mind.
 
The next morning we received the happy news about Nick's clear EEG, bringing many smiles to all of us. Even the stoic Pete laughed out loud and posed for pictures.
 
 
Weston too was all smiles from the happy news.
And unusually tolerant of his photo-seeking mother.
 
 
 
Our ride home was filled with an abundance of emotion. We felt an overwhelming sense of: exhilaration, relief, gratitude, happiness, fatigue, angst, some sadness and a profound sense of thankfulness. It is a bitter sweet feeling, a poignant victory that comes from many years of trial, turbulence and tears.

This lack of seizure activity will allow Nicholas to learn, grow and develop into a happier and healthier man. There will be no more cognitive regression. His speech and behavior will improve. He will have the ability to run, jump and play safely without fear of dropping to the floor. He can sleep peacefully and awake refreshed finally able to live without interference from the debilitating whisper of that terrible beast.
 
Processing all these feelings is difficult. I am once again experiencing a type of emotional whiplash. Perhaps not surprisingly, Nicholas and I spent much of the weekend......sleeping.
 
 
We are free at last.
With only one more terrible monster to conquer.
But that fight is for another day.
I am happy right now just to relinquish my sword
and humbly thank the powers-that-be for our victory.
 
 
I am so very proud of my son.
 
 
And so very thankful for the loving support we receive from others.
Thank you all.
 

Thursday, January 8, 2015

The Man I Almost Am


Weston is changing in some very noticeable ways. His voice is deeper and he has grown about four inches in two months. Gone are the delicate features of his face, replaced now with a strong jaw line and man-like qualities.

He is no longer willing to pose for pictures; so when a window of opportunity arises, I pounce. I am trying to respect his strongly expressed need for teenage personal space.

Last month, I participated in his IEP meeting.

As usual, our pit bull/advocate did not spare me from the blunt force trauma of his true reality.

Why am I never ready for this?

She stated that he may not graduate with an "official" diploma.

Deep breath.......yes, that's right, no diploma.

Mostly because she believes it is highly unlikely he will pass the MCAS exam.

She explained however, that there is some good news to all of this.

His current school will be responsible for funding technical school opportunities after graduation. He will also qualify for state services for job placement assistance.

She suggested that Pete and I seek conservatorship for overseeing his finances when he reaches 18. She explained that he does not possess the emotional maturity to manage this task and is highly vulnerable to those who may wish to exploit him.

Tough, but important news to digest as a parent.

I have no doubt that Weston will find his way in this world, that he will be successful and independent.

But as a responsible parent I need to ensure that he possesses the skill to do it safely and in a time and manner that is appropriate for him. No matter what his peers are capable of doing.

For Weston, it's all about having that extra time, to be "the man I almost am."

I need to find the strength to give it to him.




Wednesday, January 7, 2015

Unconditional Love


If we all

could see the world

through eyes of a child

we could see the magic

in everything.

Sunday, January 4, 2015

Extreme Parenting

When you become the parent of a child diagnosed with special needs you enter a world of...


Extreme Parenting

Life for 'typical' families is fairly predictable. It is a series of casual ups and downs. But for the most part, it has a calm and consistent flow as it travels around and around.


If you are a family raising a child with complex medical needs, the flow of life is constantly disrupted, it is turbulent and extreme. It moves fast in every direction, up, down and all around. Abrupt and constant medical/behavioral crisis can make life feel like you're a passenger on this:
 

experiencing a series of high, highs
 
 
followed quickly by low, lows
 
 
making you feel you're sitting on this:
 
 
and wanting to scream like this:

 
For a special needs parent, these sudden extremes of feeling can create a type of emotional whiplash, a feeling of being thrown violently forward, backward and side to side.
 
Manifesting physically as feelings of despair, restlessness, sadness, fear and fatigue. If you are a follower of my blog, you may have noticed the roller coaster ride of emotions I feel on a daily and weekly basis.

Maintaining sanity during these emotional extremes is challenging. It requires just as much work to care for myself as it does caring for my children. But how do I incorporate rest, relaxation and peace into a lifestyle filled with so much crisis and chaos?

The answer is...it's difficult.

"It's difficult" ...... is the mantra of my life.

But I guess it only makes sense that if the balance (of my roller coaster life) is tipped further into the difficult category, then the energy necessary to bring the scale back to a peaceful position must be greater.

I am sure Einstein has a formula for this? Maybe something like this?


So, I need to create energy.....lots and lots of energy.

For me, that energy is in the form of releasing emotion.

It's important to understand that healthy release of emotion is expressed differently in different individuals.

For me, it's all about expression.....I talk, or write a lot. I express outwardly.

For my husband, it's all about contemplation. ...he thinks and resolves inwardly. He is quiet.

But what is the same for both of us, is the need for healthy distractions.

This can be hobbies, exercise, meditation, and most importantly fun and time away.

But what is perhaps MOST important is developing not only an ability to express, but an ability to accept and let go. Feel the sadness, anger, regret and pain but release it quickly so it does not have an ability to fester.

The speed of a chaotic life demands an equal speed of "letting go" energy.

A kind of fast motion emotion...a need to begin living in the moment.

It is hard work processing emotions.

In fact it looks a lot like a scale that tips repeatedly back and forth, and back and forth until eventually,

balance is achieved
 
for a moment.

 
until it is time for the next extreme