Thursday, September 08, 2011


"Clearly the label we use has extreme importance, and we need to make every effort to be accurate. Getting the label right is important for many reasons, not the least of which is that diagnosis often drives treatment planning, selection of medication, educational programming, and the way we conceptually and emotionally view our children."

Earlier this week we went to our second appointment with a new doctor. As was his procedure, I had spoken with him previously the week before so that he could be brought up to speed with Michael and his diagnosis. From now on he will be meeting with Michael and then with me as we work through how we can help him function better in school and with others.

This has been a wild ride for us as a family. And it continually brings up changes in diagnosis and treatment. This is sometimes because we are focusing on one thing (behavior) or the other (focusing and attention) and these different goals do not always fit together. Sometimes a medication that works for his attention skills, causes him to behave in ways that mark him as different (OCD behavior). Sometimes if he is not on his focusing medication, he is hyper-active and will not stop talking to you about his latest obsession.

Sometimes we get stuck on the labels too. For the longest time I have been saying he is ADHD. But there has always been the other label of Aspergers. I have always shied away from that label as every professional we have seen has said that while Michael has some symptoms of Aspergers he seems to be, if anything, on the high functioning end of that spectrum. And, frankly, it seems that when using one label versus the other--more acceptance is shown with the ADHD label.

However, with this new doctor, the first point he wanted to make was that he believed his diagnosis could be Aspergers. Part of me says--who the hell cares what he is, just help me help him! But the other part of me wonders if I should pursue the other diagnosis through the school system to see if there are other accommodations that they could be giving him.

And then there is the whole labeling thing in the first place. I hate that I often have to point out that he has ADHD--I have gotten into a habit of doing so and I had started out not ever pointing it out, but as time has shown me that people seem to be very mean and intolerant of people who are different or quirky, it has been my default button to push to try to make sure he doesn't get hurt (or at least not get as singled out).

In the end I will have to just see what this school year brings. I hope it brings not only learning but some understanding of how to fit into this society which can get very hung up on labels.

"Whatever their profile, whatever their label, both the child with ADHD and the child with Asperger’s syndrome require us to change our assumptions about relationships and our expectations about behavior. They are both demanding, confusing, exhausting, and frustrating. Inside, each is a child who needs tolerance, our informed understanding, our thoughtful interventions, our patience, and our love."

Quotes from this wonderful article.



Kristin said...

It sounds like your new doctor might be really good. I know several kids who are diagnosed as Asperger's and the school system has made some wonderful accommodations for them. One way or another, I hope you find Michael the help you are looking for.

Suzy, Not a Fertile Myrtle said...

Ahhh, labels. I have a love hate relationship with them. The thought of being "stuck" in a category is frustrating, but at the same time having certain labels brings extra help.

I hope this new doctor can help Michael and your family as he goes through the school year.

After meeting him in person, he really is a delightful and interesting fella. Ike and I really enjoyed our time with him (and you guys) last year. Can you believe it's been a year almost?!?

Hoping you get the help you need to transition him through the school year.


andrea said...

hoping that regardless of the "label" - things are on the right track for Michael and you all.

Cibele said...

I jus hope you find what you are looking for, a way to help him!!! You are a great mother my friend

MrsSpock said...

Coming from a family rife with mental illness that falls between the significant and lifelong disabling and the mild yet annoying, I can understand not wanting a label. Once it's there , it's there. There can be a stigma.

One huge grief for my siblings and I is that our father has always refused the label of schizophrenia, and therefore any treatment. That lack of treatment has affected us all greatly. All 5 of us kids fall somewhere on the sprectrum when it comes to mental health issues. My brother too has refused that label, and suffers from crippling anxiety and panic disorder, so much so that when his wife went in to labor this summer, he could not drive, and my mother had to take them to the hospital. That finally got him in to see a doctor.

For me, I have mild OCD. I do appreciate knowing that I have it, and using cognitive behavioral therapy interventions has always been enough to manage it. Knowing that it is just what I inherited from my family, and my brain comes with its gifts as well as its dark side, it helps me manage life better.

I am more easy sharing that label with professionals rather than anyone other than close friends. As a parent, I would be more comfortable sharing that label with school professionals for my child, but would probably consider it TMI for other children, friends, and extended family to know.

Anonymous said...

All that matters is that you are aware that he has needs, you are addressing them, and at the end of the day, you are advocating for your child. That's what a good mom does! So be proud and know that this is a journey. I hope that the doctor helps!

Heather said...

I found you through lost and found and I'm glad I did. You have a lovely blog. Good luck with all your futher plans.
Just wanted to let you know that I am a teacher in a normal school that does have some special needs kids too, and I have taught the most wonderful Aspberger kid. So polite. He would always wait until he could see I was not busy and then ask for help. Yes he wasn't social and he did know a load about dinosaurs, but a real gentle soul that I appreciated. Another older kid in our school was also Aspbergers and he also did very well. There are actually very famous Aspberger people that have achived well. You could also land up with a genius. Trying to find the silver lining here!

Kate said...

I would LOVE to get a label for my young'un. I seem unable to get a label, and so it's hard for us to get the proper treatment. My boy is 13 1/2, just started the 8th grade. He got a "preliminary" Aspergers diagnosis from a therapist, but our HMO (apparently) wouldn't/couldn't approve the formal testing. Next, I'm gonna try the local school district; I understand they do the testing for free. And then, maybe some special services/accommodations will be available for my boy as he begins high school next year. ::sigh::

So, yeah. I feel ya. You're damned if ya do, damned if ya don't. :-D

JJ said...

Im so sorry Im behind on the goings on of your life, my friend.

Michael will be in my thoughts -- I do hope that things will work out with the new doctor -- lots of big, big hugs.

Youre an amazing Momma--your family is lucky to have you!

Killing time...

Things I have been doing lately: Job hunting Cuddling with cats Worrying about the world at large Worrying about Michael's future...