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Saturday, December 22, 2012

The girl in the Hanna Andersson dress

Last night, I went to the holiday concert at Freddy's school.  Freddy wasn't in the concert, but my friend's daughter was, and I love hearing the music.  It was a great night, with lots of different music groups performing.

During one of the sets, I found myself unable to stop looking at a girl playing in the back row.  She had on a dress that is a type I love---a fair isle sweater dress, like from the Hanna Andersson catalog.  I didn't know they made them in her size---she was as tall as a tall adult. It was the kind of dress either a misguided parent would pick out for a girl who wouldn't know to object to it, or a dress that a girl would want to wear that didn't realize how odd it looked on.   Her hair was done in an unusual way, and she had  a look, a look that I think I know.  She was "on the spectrum", I'm fairly sure.  She'd be on the very, very high end of the spectrum, as Freddy's school is an exam school, accepting only pretty strong students, and she was in one of the more selective music groups there.  She was on the far opposite side of the spectrum from Janey, I think.  I could be wrong, but I don't think I was.

It's a dirty little secret, maybe in my own mind only, but I think not, that there is some jealousy and nasty thoughts by those of us with low functioning kids toward high functioning kids.  I shouldn't have it.  I have a child that was once considered on the high functioning level, and I know it's not easy.  But there are times I think "Yeah, you worry your child might have trouble making friends, you work on workplace issues, you talk about how their disability might lower their SAT scores.  Cry me a river.  I'm dealing with smeared diapers, hoping someday my child might be able to do well enough to live in a group home, wishing they could some day read a simple sentence.  My sympathies are limited"  But last night, I got a little perspective, if only due to my own imagining.

I projected about that girl, and a few other kids I saw---a boy in one of the choirs that was not with the program, not in rhythm, another boy who played like a professional but looked hugely awkward and unhappy.  I thought about what life must be like on the very edge of fitting in.  I thought of the lack of sympathy that must exist for kids that can score high on tests, can play instruments amazingly, can be there almost part of it all.

Janey will never fit in.  The older she gets, the less she fits in.  And that, in some small ways, is easier than the alternative.  When we go to a store or other public place, it's immediately obvious she is not typical.  She makes her "Ahhh-ahhh-ahhh" sound, she waves her hands, she sings to herself, she has to have her hand held every second.  People, the vast majority of people, look at us with kindness, or if not that, at least some degree of sympathy.  Many people love Janey.  She doesn't have to struggle socially, as she has no idea whatsoever she doesn't fit in.  She doesn't try to fit in.  She is low functioning enough that unless someone is extremely judgmental or clueless, they don't assume she's just a naughty or loud or ill-disciplined little girl.

But that girl in the Hanna Andersson dress, the girl that might actually be just fine, but the girl I used as a jumping ground for thoughts---she probably lives a daily struggle, unable to quite keep up, being very bright but not able to use that to fit in.  I am going to keep her in mind, and be grateful, in an odd way, for Janey's obvious disabilities.


Sophie's Trains said...

I know exactly what you mean about the resentment regarding the higher functioning kids. We had just completed a 5-week developmental delay play group session. Sophie was clearly the lowest-functioning kid there, the "most autistic of the autistics". I found myself inwardly upset with the other parents too. You're worried about your kid's social skills? Aggression? Your bloody kid is singing songs, reciting the alphabet, while mine is happily flapping on the infant mats in the corner. I am not seeing the silver lining yet. Maybe I will be able to gain your wisdom and maturity in time. I'm just bitter now :)

Suzanne said...

I have to admit I tone down my feelings for this blog sometimes! I am not as wisdomful and mature as all that! There are times I read news reports or other blogs and think "autism? You are calling that autism? Your kid just got into college!" Last night stood out for me because just for that brief moment, I did see that it would be hard at the other end too, but that was a brief moment in the midst of long years of feeling that I'd give almost anything to have those high-functioning problems. I've had a little of them, with my older son, although I don't think he ever really had HFA, but even so---there is NO comparison. There were tough moments with him, but it's NOTHING like with Janey. Not even in the same universe. The silver lining is very, very thin. If you bought jewelry with that thin a silver lining, it would probably be from the dollar store and would wear off during the first wearing!

Becca said...

How do you feel about the new definition of autism (getting rid of the Asperger's diagnosis and rolling all autism into one)? On the one hand I can see how it would help families get much needed services but on the other I can imagine how it would be tough for families like yours.

Suzanne said...

I'm not sure how it's going to play out. I don't think it completely makes sense, just knowing for myself the vast, vast difference between someone with Aspergers and someone like Janey. The services they need are exceeding different, and it might not serve either end of the spectrum well to have the two combined. For example, social skills clubs or help with college transitions are great services for someone with Aspergers, but not anything Janey could make use of, while she needs more things like toilet training help and a plan for someone maybe living in a group home, or support for always living at home. So it might be tough for both sides. I know some people are worried their child will no longer be considered to be on the spectrum at all. I don't have worries about that---Janey is never going to be in danger of not being considered autistic---but I can see how that would be a worry too for some. The way it might be tough for us is if people see a child like my older son, who is very bright, applying to Ivy League colleges, etc, and think that all kids with autism are like him (not that he has that diagnosis any more, but if we hadn't decided to have him retested, he might) People already often don't realize that about 50% of children with autism are also intellectually disabled (retarded), and that causes issues often with lack of understanding how the retardation causes additional issues. So, a very long answer, but in short, I'm not sure how I feel!

wellymom4 said...

First time I found your blog and already on my 2nd post. I can't stop reading, it's really good and thatnk you for sharing your life.
My daughter is that girl in the Hanna anderson dress... Yes I'm thankful she is on the higher end although she was not when she was younger. Now she is in 10th grade and it's so hard to see her struggle to fit in. She is so uncomfortable in her own skin, and she is well aware of other girls her own age. She is so lonely. She has always had food issues and now it's turned into anorexia. She cuts, and still bangs her head when she is upset. She is bigger and stronger than me and when she rages, people have to be called in. I think we moms all deal with tough days and nights, no matter what end of the spectrum our child is on. I pick my daughter up everyday from school and while I'm waiting, I look at the typical high school girls laughing and having fun, jumping into their boy friends car after school and then I see my daughter walking towards me alone, head down and feel so sad for her and worry what life will be like for her. Will she go to college, fall in love, have children? It's tough. Manuela

Suzanne said...

Hi, Manuela--I'm so glad you found my blog. Thanks for your kind words. It sounds so tough with your daughter. It does make me realize how hard it must be to know you are different, and how it is in a lot of ways a lucky thing that Janey won't know that. I am dreading the day you describe, when Janey is bigger and stronger than me. I hope 2013 turns out to be a good year for you both, and I hope to get to know you more!