Monday, March 8, 2010

Am I Violating His Privacy?

Obviously, I haven't been posting a lot lately. In part because I've been writing in my journal more. In part because I haven't been sure about going public with the dominant fact of our family life. It's been so important to me that blogging not violate the kids' right to privacy. Quoting something funny is one thing. Revealing their problems to the world without their permission is another.

I've talked with Jason about it & he thought that we'd eventually have to say something. So here it is: Graham has autism.

He was first evaluated about 7 months ago & the Complex Communications Disorders Team didn't feel like they could give him a label. Some of his behaviors match autism profiles, but his advanced vocabulary & his ability to focus on certain types of activities didn't. It's not unheard of for gifted children to be misdiagnosed as autistic & I so hoped that was the case. But, after six months of observing him in school & at home, they felt they could stick a label on him and it wasn't the one I was hoping for.

Since then, I've been looking at Graham's babyhood with new eyes. Realizing that the reason he couldn't sleep in crib was probably related to the autism. That what I used to think of as his "sympathetic crying" -- he'd tear up when Cami cried -- was probably because he was over-stimulated by the noise. Recognizing that he needs to put things in his mouth to really experience them -- and realizing that he was much calmer when he still used a pacifier, because the paci met his needs for oral stimulation (that sounds dirty -- sorry).

Last summer, just before he turned four, he threw a fit in the park because he wanted on some playground equipment & couldn't hop on. A grandmother, thinking she was being sympathetic, asked if he was two. When I told her he was almost four, she commented, "Some children just need to learn who their master is."

I didn't say, "My son is a child, not a dog. He doesn't have a master, " although I have thought that for a long time. I've always tried to accept my children for the people that they are, rather than they people I think they ought to be. And having the diagnosis, growing in my awareness of what Graham's needs are in the context of his diagnosis, is helping me see how to show others what a really cool little boy that Graham is.

12 comments:

Anonymous said...

He is a fabulous little boy and we miss having him around (as well as the rest of you!) very much.
I don't even begin to understand the universe, but if this is the path he'll travel, I am so very glad that he has you as a mother. That is a tremendous blessing.
-ld

Starr said...

Lesley, I've been thinking about you & Tim a lot this month. About how you two are true friends to all of us, but especially how you two provided the respite that Graham sometimes needed from the chaos that Cami & I create. . .thanks for loving that little boy who would ring the doorbell & beg to come "Up!" Tim was dead on when he said sometimes he'd think Graham was saying, "Hey, can you help a brother out? I can't take it anymore."

Sacto Cat Woman said...

He is indeed blessed to have you as his mother.

I have missed your blogs. Maybe this is your calling. I'm guessing that your writing about him and your experiences will offer a ray of comfort and hope to other mother's who are dealing with autism. Graham must be very high functioning autistic because he seems to be all boy and does indeed sound very bright.

Ellen Fehr said...

Love him, love you, Amen to the other comments!--Grandma Ellen

Tricia said...

The scriptures are very clear that our Heavenly Father knows who we are (Jeremiah 1:5). Graham is a charismatic kid with an amazing mind. I love hearing stories about him and look forward to "watching" him grow up.

Maegan said...

He certainly is a really cool little boy who is blessed to have a mom like you. I love reading about all the adorable, witty things he says and does. Can't wait to see you all soon!

Kristin said...

Thanks SO much for sharing that. I don't exactly know why, but I felt such a comforting, enlightening spirit as I was reading this. Something about Rheddick. We'll see where this goes. I know it was hard for you to share a "label" about a beautiful little boy that cannot possibly be reduced to a label, but I really appreciate your bravery, as usual.

Jen said...

You are very brave for writing this. One of my kids has some behavioral issues and he gets labeled a lot, I just want to have him wear a shirt that says, "shut up, you don't know me." Having children has completely changed the way I look at others- and to never, ever judge. Graham seems like an incredible little boy- it just goes to show that we are each so much more than the world thinks we are. thank you for sharing this.

Marie said...

I think it's good to be able to share with others Starr, and to get their feedback and support. My eldest daughter is developmentally handicapped. We found out for sure when she was 4 1/2 and I went to register her for school. The school nurse suggested that we have her speech assessed. The speech therapist suggested we have a complete assessment done, and the rest is history. Oh how devestated I was to find out that my precious little girl had a major handicap. I had probably known all along, but had been burying my head in the sand. Oh, how I cried and railed against the powers that be for a very long time. Then I realized that wasn't really changing anything. I learned to accept it and then to move forward. It would have been so helpful to me at the time if there had been the internet to hook up to and to help me through a very difficult time in my life. I felt so alone. I shall keep you and your family in my prayers. ((((hugs))))

Carmella 'n Sydney said...

Starr, I am so glad that you shared. I am even more glad that you found me online and am excited to learn more about your family and what is going on as I read your blog to catch up on the years since you moved away from Tallahassee. As I read this blog, it made me think about my nephew who has apraxia. The struggles that his mom goes through are on a near path that you are walking. I have pasted her blog address so you can read and might find comfort that you are not alone (even though I know you, know you are not). Here is the address: http://rowdystroudy.blogspot.com/2010/03/what-is-wrong-with-you-son_25.html.

Tuihalalalala said...

I absolutely loved reading this ♡ when we talk about our children we think of all the beautiful things that they are we don't think of them as autistic. They are who they are. I personally want mine to be the way he is always but I know he has to grow up someday!

Tuihalalalala said...

I absolutely loved reading this ♡ when we talk about our children we think of all the beautiful things that they are we don't think of them as autistic. They are who they are. I personally want mine to be the way he is always but I know he has to grow up someday!