Sunday, November 09, 2008

Is this information relevant?

Last Monday I took Chris to see a pediatric developmental specialist, one of three people in the valley reputed to be accurate at diagnosing autism spectrum disorders. Before the appointment we received several different questionnaires to fill out and return. Chris's school (where he still goes for speech therapy) sent in their own battery of tests and assessments. Everything had to be back to the office at least one week before the appointment. Since we scheduled back in June to take the first available appointment (yes, it was November 3) there weren't many problems completing our paperwork in time.

The doctor spent about 15 minutes interviewing Chris and me and then he looked at his little computer, cleared his throat and said, "Well it looks like Asperger's, although it could be a Pervasive Developmental Disorder, Not Otherwise Specified. Asperger's by definition is not diagnosed when language delay is present..." To which I said, "Speech and language are different things and Chris has never had issues processing language, just forming sounds."

It was all very civil. After making his pronouncement the doctor asked if I had any questions. Of course I did (shocking, no?). I asked about homeschool versus public school. He said it was a personal choice and he didn't have an opinion. I asked about social interaction. He told me that usually he recommended that school was a good place to learn social skills but he understood we were from Nampa... and some schools are better than others when it comes to dealing with developmental disorders.

Hmmm. Isn't it interesting that even the medical community in Boise has heard that Nampa schools are not the greatest? I sit here laughing because I can not count the number of times I've said something to the effect of, "I'd keep Chris in school if we lived in Meridian or Kuna..." It's not that I don't have a great appreciation for the teachers and therapists Chris and Sam have worked with in the Nampa School District. I love them all. To a person they have been kind, caring, compassionate, well educated, and hemmed in by the quirky policies of the Nampa School District.

Wouldn't it be wonderful if we could just do away with the entire district hierarchy, leaving only the principals and school faculty and staff in place? If that ever came to pass I'd seriously consider re-enrolling Chris in the elemenary school. His IEP team last year recommended that we pursue the option of dual enrollment. He could learn the academic subjects at home where he's less distracted and better able to focus. He could go to school for the part of the day "specials" are taught and do his speech therapy, p.e. (always important, don't you think?), art, music, library, and computer lab. It sounded like the best of both worlds. He'd still get the social interaction (which is only so very important if you have a social disorder) and he'd get to experience some subjects on a scale that I'm really not able to reproduce at home (my form of p.e. is to put in the YogaKids video).

Then the school year started. His therapist reluctantly told me that the district has changed it's policies for this year. Chris would qualify for speech therapy if we used a service plan and said he was enrolled in private school (which homeschool is). Chris could also have dual enrollment and attend specials. He could not be dual enrolled and keep his speech therapy. Does that make any sense to anybody?

The therapist has been working on finding a compromise ever since. On Wed. the psycologist who was on our IEP team recommended I call the district office and start asking questions (I've been pretty passive since I really feed off the energy generated by confrontation... it's a bit addictive so I try to avoid it all together). I called. The lady in charge of special education told me that we'd need to form a 504 team and that if that team determined speech therapy was needed they could write it into the 504 plan (a 504 simply outlines any special accomodations that need to be made within the classroom for the time a student is present in class). Interesting, no? So I called our SLP and passed the info I recieved onto her. She said that is not what the district's been telling her and if they're willing to bend this far she'll confirm as soon as possible and try to get Chris dual enrolled as soon as possible.

So, back to my initial question. Is the diagnosis we recieved on Monday relevant information? I expected that once we had (or did not have) a diagnosis everything would change. And it didn't. The doctor did give me some ideas for curriculum to try and websites to visit to purchase curriculum well suited to children with Asperger's. He told us that Chris seemed to be doing well and to continue with what we're doing and check in again in six months.

It took a long time for me to be willing to go through the testing and get a diagnosis. I was so worried that my child would be labeled and people (especially teachers) would look at him differently. Now that we're homeschooling that doesn't seem to be much of an issue. It also took this long for me to realize the most important consideration when it came to diagnosing my son... a diagnosis doesn't change who his is. He wasn't broken before we had a name to call his quirky traits. He isn't broken now that we do have a name for those silly tendencies like fascination with smells and rabbits.

In essence, nothing has changed since last Monday. There are not a slew of new ideas or people running to show us how to "deal" with this unique child. He's doing well. I guess we'll keep doing what we've been doing... which is loving him and praising him and cherishing him for all the things that make him unique and special. Wouldn't everybody love to have someone in their house with a map of their surrounding permanently imprinted on their brain? Shouldn't we all take time to really smell the flowers (and rain, and wood shavings, and kitchen spices, and crayons, and...)?

6 comments:

Amy said...

I think that your wonderful post shows the difference between you and some other parents.

You never expected your children to be "normal", you have always embraces their differences. Where some parents would never want their children to draw attention for anything quirky of creative. Some parents only want to call attention to their children's perfections or popularity.

I think you though have a great trait in a parent, you want your kids to be individuals, in fact you expected it. You understand that each person had different strengths and weaknesses. So no, for you having the diagnosis doesn't change anything. But for those people who only want normalcy and want their children to "fit in",I think having a diagnosis gives them a reason.

I think God gave Chris to you because he knew that you would be one of those parents to love every part of him, and one who would see all his positives as far outweighing those few quirks that can drive you crazy!

Mrs. B. Roth said...

Ditto what Amy said. My kids are pretty interesting in their own little ways and I try too often to steer them back to normal, or at least well rounded. But I'm kind of a nature (as opposed to nurture) person - I think a lot of who we are is in our genetics (or part of our eternal spirits) and as parents, the best we can do is give our kids unconditional love and a safe place to be who they are, right?

Asperger's, huh. Every other odd kid I know is getting that diagnosis. One kid talks about Monster trucks all the time; Asperger's. Another kid can't stand tongue clicks and gets violently angry, threatening to kill the tongue clicker; Asperger's. A little girl is very shy and doesn't make eye contact, rarely talks; Asperger's. I don't think doctors know much of anything and you are right, the diagnosis changes nothing.

Thanks for setting a good example of awesome parenting for me: Love the kids you've got! Oh, and Crichton FINALLY got around to asking me how babies are made and I totally gave him 8th grade basic biology, all logic, no emotion, a shot of morality, no embarassment. Thanks!

Love ya,
Brandy

Mambinki said...

You are a good mom: loving, accepting, well informed and patient with the annoyances of the special education system (and school system in general)

From what I've noticed, a lot of kids displaying the symptoms of high functioning autism tend to have different specialist going back and forth about the Asperger's v. PDD... doesn't really make too much of a difference. I do think this is a real diagnosis, certainly more common now and also noticed more. I've worked with a lot of kids on the autism spectrum and they were all just... kids! Pretty awesome kids, most of them too. My boyfriend's niece has Asperger's too and she is such a cool kid.

From what I understand of a 504, if the child has a mental health diagnosis (or developmental disorder) then they should qualify for 504. That can be the way "in" to special ed services and then all of the assessments for a full IEP can be considered. Of course it varies from district to district and it all is very confusing and irritating so I empathize w/ you and admire your patience with the process.

Octamom said...

When our 4 of 8 was diagnosed with hearing loss, I loved and so appreciated what the person doing the ABR said(Avoked Brain Response--a detailed hearing test done under anesthesia)--she said, "You are walking out of here with the very same child--now you just know a little more about her." So labels and diagnosis and all--well, okay. But I love that you know that Chris is Chris, the same amazing little guy you knew you had before all the appointments and meetings and testing.

Thanks for sharing this chapter in your journey...I look forward to hearing more about your homeschooling adventure with him--both what he is learning as well as you!

Blessings!

PearlsOfSomething said...

How... "interesting" that your state's laws differ from NJ and PA, yet the whole IEP/504 situation is just as muddy.

Wishing you the best of luck. You know your boy best. Follow your gut!

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