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.

Wednesday, December 7, 2016

What About Weston?

As a parent of two children diagnosed with special needs, it is difficult for me to balance my time and advocate equally for both of my children.

Since Nick's disability is pretty much in-my-face with his unique set of medical, behavioral and food-seeking challenges, it is often he, who gets the bulk of my immediate attention.

At school or in the public setting it is the same story, folks can easily see Nick's challenges and need for accommodation. It is Weston who is invisible.

Weston looks like a typical teen. He is healthy and tall. He will look you in the eye and shake your hand with a smile. He is handsome, helpful and polite.

But underneath, Weston carries a similarly disabling diagnosis.

Although he has many strengths, Weston is a young man who is significantly behind his peers socially, emotionally and intellectually. He is unable to make friendships, join clubs, play sports or fit into a public school setting. Academically, he is eight years behind in math and five years behind in English. He has been called a faggot, a retard and had rocks thrown at him in gym. He has become depressed and anxious but unable to explain in words exactly how he feels or what he needs to be successful. He has told us he wants to end his own life.

You may recall his recent hospitalizations.

So for these past few months,

I have been focused intently on Weston.

(although Nick did require some serious medical care.....but more on that later)

Weston is a senior in high school.

And much like the difficulties I experienced with Nicholas, I find myself once again at odds with our public school system, who believes, despite his delays and difficulties, Weston is ready to graduate and function independently in the world.

Say what????????

FYI, if you are not familiar with special education law, children diagnosed with disabilities are entitled to receive special ed services from their school district until they are 22.

But of course, all of this costs money.

And so the pirate in me was unleashed, again

Only this time, the crusade began for Weston.

I unsheathed my sword and stood face to face with that same fearsome opponent.

Zack Downey Deviantart

But the conflict was a very heated one.

We could not reach an agreement and headed to a pretrial hearing in Boston with the Bureau of Special Education Appeal. With no attorney to represent us, I had no choice but to enter the battleground alone drawing swords with a bumptious and arrogant school attorney hell-bent on bringing down the emboldened and derelict mother.

But the judge in this case was intelligent, insightful and impartial. He sought to thoroughly understand the case and suggested the parties compromise.

He suggested that Weston be placed at a collaborative school for a 45-day evaluation where he would be studied in an impartial school setting and evaluated for his preparedness and ability to transition into the world. We would reconvene at the end of March to check on his status.

We agreed and since Nick was already enrolled in a collaborative program, the school suggested we place Weston there as well.

Hallelujah, Hallelujah,

I did it.
I faced the beast and held my own.

But now is not the time for celebration.
Home alone, Weston is still struggling,
So I arranged for some in-home therapy services, hired a new therapist and visited with another psychiatrist to get a second opinion on his medication management.

This one is for you my dear sweet Weston
It is time for us to find the road that leads to the happy and healthy future you deserve.

I am now ready to sail to some uncharted island in the south pacific to drink some rum and rest me weary bones.

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