The Imperfect Community

[Jessica]

So, I just let Graham's school know about his medical diagnosis of Asperger w/ Hyperlexia, even though we got the dx almost 2 months ago. I figured we weren't going to act on anything until next school year anyway, so why push it.

Well, when I called his teacher and told her about, it was received with complete silence and then major defensiveness. The suggestion that they may have to change Graham's curriculum to suit his needs set them off into a tizzy. First, I was told that they couldn't do that because they had to abide by Illinois State standards, which I thought was really scary, coming from a special ed. school. They should know better than that. It's not their choice to make, this is federally protected and mandated. Screw IL state standards. It doesn't apply here, except that Graham will require a higher level of learning, in conjunction with state standards, but why should I have to explain that.

Anyway, his teacher (who I normally adore) said that we would have to have another meeting with the director and the other therapists involved in Graham's care and education and discuss this. She was so uncooperative that I decided to call her back the next day.

She then got totally defensive and said that Graham didn't need an organization to come in on his behalf to require a new curriculum because she was already doing that with him and if I was going to insist on this diagnosis, which she made clear she doesn't believe in labels on people, that she would just stick him in a class with severely autistic children who were unable to communicate because this is what I wanted. I told her under no circumstances is that A) what I want and B) what the neurologists suggestion was. In fact, it's the opposite!

So, because of this new job, I couldn't be at the meeting, Scott went. I spoke with her one more time before the meeting because I was completely taken aback by her reaction. It was the third call that I realized that she felt the dx and our presentation of it was an attack on her abilities and commitment to Graham. I reassured her that that wasn't the case. She told me that Graham was really important to her and if he was going to be moved to a "blended" class next year, out of her class (which the dx statement from the Dr. suggested), that Graham would not get the attention that he is getting in he's currently getting because there would be 16 kids to 1 teacher and one aid instead of his current situation which is 12 kids, 1 teacher and 3 aids.

Anyway, it all ended well and Scott was able to reach a compromise with them that Graham will do several pull-out sessions in the blended classrooms next year and we'll see how that goes. Everybody is happy with this resolution.

The thing that is really making my mind go loopy though, is the school officials, therapists, teachers etc. (and Graham's teacher mentioned this to me on the phone, but not in detail) are convinced that the dx is inaccurate. They believe that Graham has Acute Anxiety Disorder coupled with being gifted.

So, NOW WHAT? At first, I was very hesitant to buy their line of logic, believing that they were simply trying to get out of the new curriculum protocols, but then another side of me says, why would a school that deals with so many different curriculum protocols mind another one. Graham's teacher does take a commendable and impressive interest in Graham, so what would be their motivation?

And, my follow up visit to the neurologist next year, when I tell him what happened, I think he's going to tell me that I allowed them to walk all over me. He already warned me that his school was going to try to fight it, yet I really feel like they've done such a great job with Graham. Who am I to tell them is broke when it's obviously working? Plus, you can't buy the kind of dedication his teacher has.

I bought her a box of Godiva chocolates the other day with a thank you note because I felt she needed a little stroking and she wrote the nicest note back to me.

So, I don't know. I was all content with the knowledge I have, now I feel I'm back to square one and not knowing what the hell is going on or what direction we'll take.

What do you ladies think? Should I challenge the school or the doctor?

[Petulant Pixie]

I think you should just take one step at a time. I think that from what you've said the teacher seems committed to Graham and what's in his best interest, and of course so is the doctor. Since a compromise was met, I'd just go with it and see how it works out and then address issues if they come up.

If he does well and his needs are being met and all is well, then there won't be any need to address it further, KWIM? If it were me, I'd just take it as it comes at this point, but that's just me.

[ExCareerGal]

Jessica,
They both have two different paradigms. Educators do not care about specific diagnosis (especially since they have good chance of being wrong before age 9 and really precarious before age 6). Since we tend to try out different methods until we find what works it really does not matter. Since one kid with (put in diagnosis here) is nothing like another kid with the same diagnosis, we usually do not find that information too terribly useful.

Doctors on the other hand find symptoms, make diagnosis and then prescribe treatments. They do as much trial and error as educators do but they usually do not like to admit that.

I think they are both correct. I could not tell you the difference in a child with the two sets of diagnoses you have been given. I think the doctor is giving good advice. I also think the school is doing what they can. Honestly- the diagnosis is really irrelevant and may change many more times. I think he has symptoms of all of those things. People do not fit into groups or labels or symptoms categories like educators or medical people put us.

Unfortunately, even if you get the perfect diagnosis- there is not a one to one correspondence with a treatment or cure. Each person is different. I am sorry the teacher got defensive, but she really is not getting why you want to have a diagnosis.

I get it though. And I think you are doing the right thing. If Graham was my child I would gather all the data I could, from as many sources as I could and try to figure it out on my own. But remember, no label from any source will truly describe your child . . . Graham is Graham.

Now why would I still gather diagnoses like you have? Because each one has it own set of treatments, interventions and therapies, sometimes slightly different from each other. I want the largest repertoire of possible solutions to grab from. It still may be some trial and error but I would not want to limit my choices until I knew something did not work.

I have no idea if this helps. But do not get discouraged. It sounds like another piece to the puzzle. There will be more. Embrace each part . . . look how extroidinary and unique Graham is!

Janna

[Jessica]

PP and ECG, thank you both for your support in this. I agree with both of you, I guess my fear is that "Acute Anxiety Disorder" may not give us as much power as the dx of Asperger w/ Hyperlexia, KWIM? I don't know the laws well enough, but perhaps Acut Anxiety Disorder is something that the schools after pre-k will think is our problem, KWIM?

Plus, I think anxiety = drugs and if they try to label him with that, the elem. is going to pressure us to drug him into compliance. (He's actually hyper-obedient though, but he is very ritualistic -- the school is calling this "anxiety", I call it "rituals".)

Plus, the damn school is who told me it might be time to get a dx!

Perhaps the dx will be better served in elementary rather than preschool.

[Petulant Pixie]

Maybe it will. It's something to keep in your pocket and pull out when necessary, that's how I see it. I think that ECG was saying (much better) what I was trying to get across--that if the school is accomidating HIM and serving HIM then that's way better than serving a diagnosis, KWIM?

But, I can see how you might feel, too, that you want all the ducks in a row, to have the diagnosis and his education plan to be in line, on paper and in practice, that it would just feel more "right" to have everything neatly compartmentalized and in order like that.

[Scout]

I agree that it's good to have the diagnosis, so it's there if you need it later even if just as a "weapon" to get hime services in school. But for now, I would let his teacher do what she thinks is best *as long as* you continue to feel that it is working and that she is dedicated to and motivated by Graham's best interest.

I know this has to be so frustrating and difficult for you and Scott, but it sounds like you are doing a really great job advocating for him and trying to make sure he gets what he needs.

[MainstreamMom]

I'm sorry you are so frustrated and the school seems to be pitting you against the doctors. I hate that!

The main goal should be to help Graham period!

I sure hope you can all get together and find the best plan for Graham's sake.

[Princesso]

Maybe things are done differently here, but when we do our IEPs for Avery, his diagnosis (high functioning autism) never comes up. The IEP meeting is to set individual goals based on what his needs are at that time, and I can call a meeting at any time to add to/change those goals as the need arises.

I personally am not convinced he even has autism at all. He also shows signs of an anxiety disorder more, along with a problem with language. But I'm not arguing about it because I have been reassured that we are doing the same things we would do regardless of his diagnosis. At some later date, if it becomes important to know for sure, we will have him reevaluated.

Also, as a teacher, I am not allowed to diagnose or suggest a diagnosis to a parent. Even if it was glaringly obvious that a student of mine was autistic, ADHD, or whatever, the most I am allowed to do is suggest that the parent discuss the concerns I have about behavior, attention, or social skills with their pediatrician or the school counselor.

[Jessica]

I got the dx based on the director of the school's recommendation! I was not dx fishing.

I do think his dx is important however, because I think his brain "disorder" is an anomaly. Asperger savants are rare and because of that, I would prefer that an organization dedicated to understanding the nuances of somebody like Graham, create a curriculum for him.

The more and more I think about it, I don't think his school has any experience with the disparity between Graham's skills and social delays.

Graham's doctor, I have recently found it, is one of the foremost experts on Asperger in the country. He is recommended on Yale's website as a resource for Autistic savants. Apparently, the more high functioning the autistic child, the more mysterious the splinter skills become. I have also learned that the more their talents are addressed (in his case academics), the more balanced their socialization becomes (the more "normal" they appear). This is because they are able to intellectualize social queues, even if they don't understand them.

Again, I am not going to worry about it at this stage, because in preschool, the therapy and education would most likely be the same, but I am confident the dx will come in handy as he integrates into a mainstream school. I'm glad I have it.

[Anthromomma]