Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, 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.

"MOM......Oh my God, LOOK...!" he shouts.

"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 an 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