Wednesday, December 15, 2010

It takes a little snow

Christmas is tough for Norrin. I know he likes it - the presents and candy and Santa. All of those things he can see - they are concrete things. But the idea of Christmas, the feeling and excitement that comes with the anticipation of Christmas. I know he doesn't get it. Christmas is full of abstract concepts that are so complex for his mind to grasp. It's religion, the birth of Christ, faith. How do you explain faith to a child with Autism? 

Monday, December 13, 2010

I think Charlie Brown has Autism

Charlie Brown: Actually, Lucy, my trouble is Christmas. I just don't understand it. Instead of feeling happy, I feel sort of let down.
Norrin loves Charlie Brown. Obsessed would be a better word. Over the last few months, It's the Great Pumpkin Charlie Brown, A Charlie Brown Thanksgiving and A Charlie Brown Christmas dvd's have been in serious rotation.  Norrin's fascination with the cartoon surprises me - there is nothing sophisticated about the animation and the dialogue is complex for a four year old. But still, Norrin will ask to "sit and watch" any of the three dvds. I explain to Norrin that Halloween and Thanksgiving are finished, it's time for Christmas. Christmas is the dvd he has the least interest in.

Watching it the other day, I couldn't help but think that Charlie Brown may be somewhere on the autism spectrum.

Monday, December 6, 2010

Whatever It Takes

I toured another school this morning. A school that was so financially out of my reach. It would require a lawyer or an advocate. And a deposit on the $92,000 yearly tuition.  Did I have the deposit? No. Would I get it? If I had to, yes. Knowing that I'd have to go through the legal process every year.

While touring the school, I couldn't help but think of that scene in Forrest Gump where his mother, Mrs. Gump, sleeps with the school principal.

Friday, December 3, 2010

Long Term Concerns & Wishes

I spent the better part of my afternoon filling out a school application for Norrin. One application. Nine pages long. I took my time, printed as neatly as possible - even at the end, as my wrist began to ache. I needed his application to be perfect; the application was for the school that I loved. The one place where I believed Norrin could truly thrive. The school that could break my heart.

I tried to answer honestly and objectively, though I was tempted to write: Norrin is amazing and adorable; accept him.  

I reached the ninth page and the final question. What are your long term concerns and wishes for your child? I was given three lines to answer the question.

Our greatest concern is that we won't be able to secure the most appropriate academic environment to meet Norrin's needs. What if there isn't a school that can nurture his strengths as well as his weaknesses? We know for many parents, mainstream is the holy grail. That does not matter to us. We are realistic about what he can and can't do. If mainstream is a possibility, fine and if not - then that's fine too. We would never want to push him into an environment where he may be set up to fail. We know that he's bright and that he has the capacity to learn.  We don't need general education to prove that. Norrin doesn't need to be the popular kid. But if he wants friendship, we want him to have the tools to develop one. We just want him to be happy.  To feel good about himself.  To enjoy his life. To be productive.  To be himself and know that he's okay, he doesn't need to be cured or fixed.  He is a lovable little boy with a charming smile.  And we never want him to lose the qualities that make him special.  We hope that as he gets older, people will appreciate him just as he is.  

They got the edited version.      


Thursday, December 2, 2010

Turning Five (part 1)

When Norrin was first born, Joseph and I had high expectations.  We would not allow him to make our mistakes.  Norrin would go on to college after high school and graduate within four years - five years max.  We never wanted Norrin to have to choose between a college education and a job; forced to take classes that fit around his work schedule.  We wanted Norrin to choose the career he wanted, not settle on the one that paid the bills.  He was going to be better than us.    

This was before the diagnosis, when I believed a school is what you made of it.  And if Norrin was a typically developing child I would place him in the zoned public school or a charter school and be done with it.  I would be an involved parent, help him with his homework, enroll him in after school the life of a typical parent with a typical child.  Knowing that my child would not be left behind.
With a child on the autism spectrum, we cannot afford that luxury.  Norrin needs more than the public school system can provide.  And we need reassurance that Norrin will not be left behind, our own parental commitment to Norrin's education is not enough.  We still have high expectations for Norrin - the diagnosis will never change that.         

The "Turning Five" process is daunting; it's a path that so many parents walk alone, unguided and uncertain.         

Since October, I've toured six schools - only one is truly suitable for Norrin.  I have three more schools to tour.  (Not including the public schools and the CBST referrals) I have no idea when my Turning Five meeting will be - I am waiting to hear from the Committee of Special Education (CSE).  All I can do is tour schools, fill out applications, consult an advocate and possibly an attorney, attain a neuropysch eval and wait.      

Norrin isn't entitled to the best. He's entitled to a Free Appropriate Public Education (FAPE) and to be placed accordingly to his Individualized Education Plan (IEP). But I often wonder: what is appropriate?  Appropriate can mean different things to different people. And the IEP might as well be called the GEP because administrators hand out placements and services based on what they "generally" assign. Administrators will refer to Norrin as a number. CSE is thought of as a business rather than a public service. They will make a decision and it will be up to us to fight it.   

But for now, I am at the mercy of the CSE. 
That is the threat in AutismWonderland.