An awful lot of the people who read this blog know Maddy, some of them really quite well. Most of those people don’t, i suspect, know quite why i did what i did when i had her diagnosed with Aspergers. A very few of you either knew her when she was younger or has seen either her, or me, during one of her slides.
It’s true to say that had i known she was going to be how she is now at almost 6, i never would have gone down that path – but it’s also true to say that you never know what is round the corner with a child like Maddy; she handles stuff i expect her to fall apart over and falls apart over stuff that ought to be fine. By and large though, the little girl i have now seems to have skipped from a needy 3 year old to a fairly competent 6 year old with apparently little effort. She has her difficulties (don’t we all?) but we know more of less how to help her. We know she can’t remember instructions, follow a sequence, remember to go to the toilet, have messy hands, wear or own something green, use a toilet that isn’t completely clean, wear anything she recognises as having been Fran’s. We know she eats her food off a clockface, a section at a time, we know she’ll dissolve at any deviation from a set pattern, we know she’ll remember exactly what anyone said, when, how or why.
But we like her. She’s just fine as she is. It fills me with wonder when i see her among her MuddlePuddle friends, racing about, so confident, so normal, so happy, so much a leader and clearly liked. She is not the child i was, nor the one i was expecting her to be. She amazes me, i am so proud of her. She has come so very far from the terrified child who sat astride my knee and wept into my coat at the faintest glimmer of social contact. She is so different from the child with a 20 point toilet routine who shrieked in despair in a public loo with no paper, who sobbed uncontrollably if she got the routine wrong and had to start again but had no wee to start again with. She isn’t the child who only learned to speak using phrases from Disney films and communicated with me in an American accent using words she knew made something happen in a cartoon.
She isn’t a girl ruled by handwashing anymore, she isn’t a girl who falls to the ground in heartstopping tantrums that render her exhausted and speechless for the rest of the day. She doesn’t try to hurt herself anymore, she doesn’t have my heart pounding in towns because she was a 4 year old who might just run into an oncoming car just because she forgot there was a road there. She doesn’t tie skipping ropes round her neck and pull it when she is frightened anymore, she doesn’t have to have a hair clip in each hand anymore, she doesn’t have a bag full of things she has to have with her at all times, we don’t count 20 teddies into bed every night, stopping to start again if a car goes past to disturb us.
She doesn’t play the same game endlessly, two things that are similar, one big, one small, acting out the “baby bug from Bug Life falling through the air” scene. She plays, within limits, but in a way that fulfills her and which is accepted by other kids. Most of it is still recognisable stories and characters we know, but it’s a far cry from the endless lining up of things, crayons, puzzle pieces, ponies, teddies, blocks that used to go on. She has taken a long time to find her imagination but now she has it and she is so happy in it.
Labels aren’t horrid, she can wear clothes with an age on the label that isn’t the one she is. She can sit in the wrong seat in a car, at a push, she can even wear a sisters coat, for a little while, if she has to. She can try new foods, she likes more different drinks than all her sisters. She can tell me what she likes and what she doesn’t without screaming or sobbing now, she knows how to take herself away for quiet time, sometimes she remembers to tell me she needs to. I don’t have to dig her out of a wrapped up duvet anymore, not unless things have got very bad, she can make it for a week away without the correct combination of blankets and bears. We normally have to take a lot of clothes though, sometimes what she wears affects how she feels a lot.
Generally though, i’d say we’ve won, for now. I think she’s happy, i’m certainly happy. I watched her last week (or rather to be honest i didn’t watch her which is stunning in itself) and wondered how on earth we’d got so far in 3 years – where did the thumb sucking, hair twiddling “oh dear, oh no” “I don’t want anything” little girl go? Where did this confident, self-motivated, learning, smiling, playing and talking (something i truly wondered if we were going to manage) girl come from? Testament to her, testament to us? How come i’ve gone, in 3 years, from being the mum that grannies tutted in Woolworths when she made herself pass out through sheer sensory overload to someone who hears, more often than anything else “Autistic Spectrum? I’d never have guessed.” In fact, i’ve stopped saying it, unless it’s useful, because i feel a fraud. I’d never apply for DLA for her, she doesn’t merit it, even thoguh she might well get it.
And then, on top of all this, glowing from her successful week last week, i went to see her in her dancing class tonight. It hadn’t occurred to me i was going to see anything other than normal Maddy, doing her normal stuff. What i got was a rude reminder that my little girl isn’t quite like she could be. She had to have help constantly throughout the class, though she tried very hard and seemed happy. She was distracted and irritating, tapping her toes constantly while the others were doing their solo moments; she was swiveling on the floor, talking and muttering. She behaved like a child with learning difficulties, with social difficulties, without an understanding of the social behaviours that all the others (including Fran so its not HE that is doing it) have. I felt so sad, so humiliated for her and so, i’m ashamed to say, embarassed by her. It was clearly obvious that the other parents could see there was a child behaving oddly in the class; if i’d stood up in the room and said “She has an Autistic Spectrum Disorder” people wouldn’t have said “I’d never have guessed,” they’d have nodded sagely and politely while being pleased it wasn’t them.
What was starkly obvious was that Maddy does not work well in a “typical classroom environment” even something fun and enjoyable like dancing. i dread to think what people would be saying to her if she was behaving like that in a school classroom, i can’t imagine either kids or teachers would be very tolerant.
It was a bit of a shocker, it felt like i was having a kind of “A Christmas Carol” “Here’s the ghost of the future you could have had” moment. I can’t say it’s made me feel that great, i’m not really sat here patting my back because my daughter is HE’d so it’s all alright, it clearly isn’t. I can’t quite marry up the Maddy i confidently believe a lot of people know and love with the one i saw in that class. It’s made me feel rather hollow. Right, but hollow. 🙁
EDIT: It’s co-incidental that the BBC are doing their Autism night, but i missed it last time and i’ve been watching since i wrote this. Interesting. (I reckon it’s Folic Acid by the way… just as a random mad off-shoot 😉 )