Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, 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, April 9, 2013

Two Smokestacks

You may remember Nicholas and I spent much of last year meeting with therapists, doctors, specialists and neuropsychologists. He was prodded and poked, tested and evaluated, all in an effort to help us understand why he was not progressing at school.

I would not give up believing in Nick's potential to learn.

Pete and I became so frustrated with Nick's deteriorating situation, we hired a special needs attorney.

Perhaps you remember her?



It was a very difficult time for us, not to mention an expensive one, since hiring a pitbull comes with a very hefty price tag.

This year however, I am delighted to report that Nicholas has made some tremendous academic progress, despite his many absences!

He was unable to read when he enrolled in the new school in October.

Today, he is reading at a second grade level and quickly approaching the third grade tier!

How cool is that?

I am elated. And although our struggles last year to find an appropriate placement for Nick may have actually taken several years off my life, I am happy to report that it was all worth it!

Nicholas has made some tremendous gains in other areas as well. The adaptive gym, music and art classes have eliminated his previous tantrumming. He is no longer overwhelmed in these large, noisy classes. He continues to receive PT, OT and ST services but no longer requires behavioral consults.

Most importantly, however, to Nick's success has been his social development.

Nicholas has significant difficulties following along in an integrated classroom. Even with aide assistance, the pace was overwhelming. So, he was placed in a substantially separate class this year with several children who share similar disabilities. Ironically, they also share similar verbal abilities so they were able to develop friendships very quickly. He now has five fellow students who see him, not as a classroom pet, but as a true and contributing equal.

One of these friends is Alex.

Similar to Weston, in his energy level and love for fast vehicles, Alex has become Nick's best buddy. They laugh and giggle and motivate each other to learn.

Nicholas tells us many stories of their adventures at school together....even the bad ones, like their experimentation with "colorful" new words and the resulting time they spent in the principal's office because of it.

One of Alex's passions is large trucks.

(Another similarity to Weston and I am quickly realizing why Nicholas is drawn to this boy)

But not just any large truck......

He loves large trucks that have two smokestacks.


Nicholas now wants "in" on this action.

Yes, believe it or not the Dora backpacks have taken a back seat to Hess trucks and tankers with two smokestacks.

Nick's friendship with Alex has influenced our entire family.

Weston nearly dropped his teeth when Nicholas introduced him to Alex's Hess trucks. As you may remember, they were at the top of his birthday wish list.


For me, it is the smokestacks.

Every morning on our way to school, Nicholas and I count the number of trucks we see with two smokestacks. We do it so often, I am embarrassed to say, it has become a habit.

"Two smokestacks!" I shouted this morning to no one in particular since I had already delivered my truck-loving son to school!

But Nick's laid-back spirit has also had a positive effect on Alex.

According to Mr Doyle, Alex relies on Nick's calm spirit and laid-back energy to soothe his wiggly energy. Alex is not himself when his friend Nicholas is absent from school.

There have been so many positive changes in Nicholas since starting this school, he is like a different boy. He is mature, happy and talkative, sharing his busy day's events with the entire family. He is no longer just an observer. He seems to participate more in conversations and activities, sharing thoughts and ideas. It is as if he was jump-started back into life.

Yes, this change was indeed a good one.

Our hard work was rewarded.

I can finally breathe and Nicholas can finally read!

For those of you struggling with a poor school experience, I highly recommend you adopt one of these.