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, November 15, 2011

The Meaning of the Word "Pest"

Nicholas and I have been slammed with appointments this week.

Usually, I try to manage our schedule better but the school and I are involved in a big debate. We are both trying to understand why it has taken Nicholas so long to master the art of writing. The school believes his cognitive levels are not sufficient enough for him to develop this skill. I believe his low muscle tone, weak fine motor skills and behavioral difficulties are to blame.

And so, to resolve our debate, we are seeking a Neuropsychological evaluation. The school offered to have their in-house psychiatrist administer the test. I decided to have a non biased outside evaluation performed by Children's Hospital Boston.

Nicholas's school was also seeking to cut back on his OT services. They have not offered any augmentative device suggestions or evaluations to assist my son in overcoming this writing deficit. He is nine years old! They performed a ten page in house evaluation with no solutions as to how we could address Nicholas's disability, once again citing cognitive issues. I decided to have an outside evaluation performed for OT and PT at New England Medical Center in Boston. This will be performed in December complete with specific recommendations for improvement of therapy services.

So.....as a result of all this additional testing, Nick and I are a bit overwhelmed with all of our appointments this month.  We have already made several trips to orthopedics, neurology and the orthodontist. Of course, with all of these extra appointments he now ends up missing more school.....?

Once all Nicholas's testing is complete, we will have his IEP meeting. It is scheduled for the end of December. This should be an interesting meeting. I will, of course, keep you all posted.

Anyway....yesterday, was our first appointment with Dr Boyer, the Neuropsychologist. BTW, we have two 3 hour appointments scheduled with her. And later, a 1 hour appointment with just me to review her results.

I told Dr Boyer that 3 hours was a long time for Nicholas to stay focused and I feared he would tire. I explained that I may need to be present while she examined him. She preferred to try at least some of the testing alone. She did a very good job engaging Nicholas and they tested together for about an hour. Nicholas did finally tire and start to tantrum. We had him take a break, I gave him his lunch and we continued on with the testing with me in the room.

I tried to remain inconspicuous, and moved my chair to the corner of the room so I would not effect the testing in any way. I started to read a book that I had brought from home but I am distracted. I can't help but overhear the conversation taking place between Nicholas and Dr Boyer. It went something like this......

"Nicholas, what is the meaning of the word, apple?" Dr Boyer asks.

"You eat it," Nicholas answers.

"Yes, Dr Boyer answers, but what is it?" She asks, trying to get Nicholas to say the word...fruit.

Nicholas thinks for a moment and I swear I can hear his brain churning......

"Ummmm, I know!......he says.....IT"S FOOD!"

Nicholas has answered her correctly and I am amazed at how "cleverly" he has answered. Unfortunately, I realize that he will probably be penalized for his response since he did not use the specific word "fruit".

Dr Boyer sighs and decides to move on.

"Nicholas, what does the word "pest" mean"?

Again, silence as Nicholas thinks......and then finally,

"It's when you pester somebody," he answers.

Another sigh from Dr Boyer.

"But what is it? What does it mean?" And again she asks...."What is a pest?"

Silence again...longer this time.

Dr Boyer asks again gently, gingerly coaxing Nicholas to explain the word, she knows he understands...

"Nicholas what is a pest?"

And with one simple word, he answers her......

"Weston."