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, November 18, 2014

Pirates of the Parenting World

 
Last week, Weston and I visited with Dr. George, his primary care physician. Dr. George is an important and supportive figure in our lives. He stands beside us and faithfully weathers many of our unusual family crises.

He is a good friend.

Appointments with Dr George are unusual because we do not talk about healthcare alone. We talk about life and Weston's personal well being.

During this appointment, Dr. George decides to address the typical apathy that often defines the attitude of teenage boys toward their mothers. I have written about it many times on my blog. You may remember Weston's OMG, I can't believe I have such a clueless mother mind set.

But today, Dr. G explains to Weston that he is very fortunate to have me as his mother. He tells him I am a pirate.


Describing me as a sword wielding, pistol slinging hellion of the sea, sailing her ship into uncharted territory, thwarting the efforts of the established regime whose misguided objective is to subdue Weston's fiery spirit.

Weston smiles just a little, picturing his mother in this devilish light. I am a little surprised too by this comparison since I usually see myself as a type of law-abiding and revoltingly accommodating superwoman.

But in thinking about this further, I believe Dr. George is right.

I am like all parents of children diagnosed with special needs, I am a pirate of the parenting world.


When you think about it, special needs parenting is not about following the rules, and obeying the laws, it's about breaking them. It's about questioning authority and pushing boundaries, aligning yourself with rebellious others, instilling fear and awakening the imprisoned hearts of a blind and passive public.

It's about commandeering a group of misunderstood misfits through dangerous waters and fighting aggressively to fulfill the selfish needs of these brave and ragged few.

It is a difficult lifestyle filled with danger and adventure, a series of intense battles interspersed with a few welcomed reprieves.

It's about mastering weaponry and finding the fire in your soul to fight bravely to the death.


You care little for what others think and find amusement in the fear you provoke in others.

But there is also an unusual kind of duality associated with being a pirate.

A certain code among thieves.

A need for being as civil as you are savage,

as cooperative as you are querulous

and as disciplined as you are unruly.

You are a master of the mundane and a survivor of storm.

You trust no one.

You sail alone, always adrift, and even among fellow pirates you find few friends. Similar spirited temperaments and accompanying bravado create frequent dispute and deadly skirmishes among pirates.

And yet with these unique few, brilliant seamanship can occur with the precise timing, execution, skill and camaraderie that builds over the many years of serving and sailing together.


But perhaps most importantly, is the indestructible energy force behind all of these dastardly deeds.

The motivating drive behind all acts of piracy and rebellion,

The burning and intense desire to seek a treasure whose worth is immeasurable.


Yo ho, yo ho, it's a pirate's life for me.


Saturday, November 8, 2014

Mathematics and Mothering

Lately, I have learned that raising a child diagnosed with special needs is a lot like doing the math.

It's about solving complex problems.

It's about remembering rules.

It's about making calculations, estimations and sometimes taking your best guess.

It is, without a doubt, a lifestyle devoted to abstract thinking.

Now, I was never very good at math,

Let's just say, I am becoming much more proficient.

My latest "Nick dilemma" involves one of his most beloved possessions, his Paw Patrol shirt.


We bought this shirt about a year ago in response to his love for the new Nickelodeon television show. It quickly became one of his favorite items of clothing. He has however, out grown it. So for a while, to still enjoy his beloved shirt, he was placing it on his pillow and sleeping with it at night. This solved the problem and all was well in the Peters household.

In the meantime, however, he has met some new "typical" classmates. One of them is V. She has become his good friend. She pushes him on the swing at recess. She talks to him about his favorite things, which includes, of course, Paw Patrol.

I believe Nicholas has fallen in love with her. Who wouldn't?

So, in an effort to win the girl, he has decided to wear the shirt.


Problem is....

It doesn't fit him any more. It is too tight and exposes his midriff, not exactly alluring attire for attracting the opposite sex. Not to mention the fact that he wants to wear it every day.

I have tried to delicately approach the subject of proper attire with Nicholas, but he is convinced that "this shirt" is the secret to getting "this girl". He is not willing to take the risk.

Enter Ms Emily.......Nick's new teacher.

She has come up with a great idea to solve this complex problem.

She is making a new Paw Patrol shirt for him.

Nick is a little nervous however, and unsure whether a new model of the same shirt will have the same effect on the object of his affection.

Ms Emily and I have agreed that V may hold the key to Nick's success. If she loves it, maybe he will too.

So in math terms, the solution to Nick's complex problem is:

X = V

Saturday, November 1, 2014

Shake-Up Call

Sometimes I forget.

I become so focused on including my son in his class activities, on empowering him to be a part of his world and enabling him to be a child like any other, that I forget.

I forget that he is not.

He likes to remind me of this fact in rather spectacular fashion.

Yesterday, we had an appointment scheduled with Nick's ortho, an important visit to have him fitted for his new Franklin shell and magic shoes.

 
This ortho, however, is a very popular guy. His wait time can be as long as 4 - 6 months.....time enough for Nick's ex-rays to become out-dated especially since we started him on growth hormone therapy. Needless to say, we do not ever reschedule appointments with our good friend, John Wall.



This morning however, Nicholas woke up feeling lethargic and slow. He was not acting like his typical happy self.

Once again, I am faced with a difficult decision.

Do I persuade my medically complex child to push through his weariness so we do not miss this important appointment, obtaining the critical devices that help straighten his spine and soothe his feet?

Or

Do I cancel the appointment, allow my son to rest and forgo obtaining these important tools for another 4 - 6 months?

Since Nicholas does not seem feverish.....only tired, I decide to risk it. I push our luck and dress him warmly for our visit with John.

John is happy to see the now very-tall Nicholas, he greeted us with his usual enthusiasm, a familiarity that builds over the many years of brace fittings and spinal examinations.

Nicholas is quiet and unusually passive during the exam. Absent is his typical hysteria over pants being pulled down too low or too much standing. He moves like a robot, passively obeying commands and moving with no enthusiasm or comment.

I know something is wrong.

His cheeks start to flush and he asks to lay down on the examining table.

Now I know, he is in trouble.

When you are the parent of child who is medically complex, medical crisis can occur in the snap of your fingers. It does not take long for your child to go from feeling slightly unwell to being in a full blown, in-your-face, holy shit medical crisis. A simple virus to others can become a life threatening event for Nicholas.

You may recall one of our crisis expeditions to Children's Hospital in Boston during the height of Hurricane Sandy.

I will never get used to this feeling.

It scares the crap out of me every time I face it.

I quickly thank John for his services and hurry the lethargic lad into the car.

Nick is unusually quiet and sleepy. I consider driving him immediately to the nearest emergency room. My heart drops like a heavy stone from my chest into my stomach.

Nick complains that his stomach hurts.

I drive at break neck speed to get him home.

Thankfully, Pete is home in case we need to transport Nick to the hospital.

We ask Nick how he is feeling but instead of answering, he asks if he can go to bed. This remember, is a child diagnosed with PWS, someone who possesses and unusually high tolerance for pain. He has not asked for dinner or his favorite dessert.

We put the tired tot to bed immediately.

I put on my pj's and take up my post beside his bed.

It is going to be a long night.

He sleeps restlessly and gets up often to go to the bathroom.

But he awoke the next morning feeling a little bit better.

He rested and spent much of his time in the bathroom.

He did not tell me that he was hungry......not even once and for the first time in my life, I was disappointed not to hear those terrible words.

An awful reminder that I have endured yet another Nicholas shake-up call.


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