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 😉 )
have really strong thoughts and feelings on this, but want to blog them – so next month sometime.lol.
i really appreciate you sharing this.
Merry, not quite sure what to say. i love Maddy, and have ssen her at a sticky hands moment, but also running around with SB – who thinks of her as one of her best friends.
Is she often like that at ballet, or was it the extra attention of the audience?
She certainly sat still for the story at Okehampton.
I think HE is great for Maddy, and you should be proud.
Conforming by sitting skill is not such an important think.
I have [joking aside] a fair number of autistic spectrum colleagues, many are very fidgetty when I think about it. They are still very well respected, as many of the things that make them diagnosable as on the autistic spectrum are things that make them phenominal diagnosticians
Is it at all possible she was just having an off day?
Thanks Merry. 🙂 You just quietened a few fears I’d been stuffing to the back of my mind about Tea.
It was something in the way that the other kids treated her and how well the teacher managed her that suggested otherwise. Plus Max noticed too, which speaks volumes! 😉
Been reading your blog for a while and, though my son is also diagnosed with Aspergers, I never realised one of your children was on the spectrum. I strongly believe now that school type situations have an especially bad effect on these children. I have seen Daniel transform in the 9 months or so that he’s been out of school. People comment now that surely he doesn’t have aspergers as he seems so ‘normal’ (ugh… hate that word!). I know within myself that there are things he will find hard outside school too but nothing compares to the mass peer segregation, conformity-worship and bullying that goes on there. He’s free to be himself with no shame now. Anyway, rambling on – just wanted to say I’m so happy for Maddy that she has such a well informed, home-educating mum! She sounds a fantastic little girl 🙂
I know it’s odd, since I’m just a 20 year old reader from Belgium who doesn’t even know you. But since I have been reading your blog I’ve always been happy for Maddy (and your other children too) that you have made the choices you have made. You’re a great great great mother and she is blessed to have you.
I know that one Merry. My lot seem so “normal\2 now and I manage to forget they are autistic most of the time but they usually give me a strong reminder just when I am not expecting it. It is a shock.
((hugs))
Merry, you could have written that about Jake, we still have ‘routines’ for various things, mostly based around clothes and food, when we had builders here Jake refused to eat breakfast and would only eat tinned spaghetti for tea, he would only where navy shorts and t-shirt and navy fleece no matter what the weather this went on from March until last week! We cant do organised groups, Jake wont co-operate, when its just us its not too obvious but with other people it is. Best wishes
Amanda
Don’t know what to say except that I get fed up with people feeling they have to be embarrassed by their children. I get sick to my back teeth by people expecting children to be 40 year old midgets rather than *children* who can fidget, squirm, pull hair, catapult bugs, pick their noses and chatter to their friends. Being still does not mean they are good. Yes it might mean they are socialised, but socialised into what – socialised into being anally retentive at 6??
Don’t be embarrassed for your children, especially not Maddy. They are all a credit to you and very able, beautiful girls, and Maddy has an amazing sense of style!!
I have things to blog about this too. Sometime next month for me as well?? Hmm
I just wanted to say that I take my hat off to you Merry, and anyone else who has a child with aspergers and autism.
I have a friend whose eldest Son (aged 8) has aspergers and so I understand the little fears and obsessions they have.
I can appreciate that it must be difficult at times, but wanted to express that you have my admiration.
Hmmm…that wasn’t meant to be a smilie, but should read aged 8!!!
((hugs)) It might not make it fine because you HE but you must now be able to see how much good you do her by allowing her to find her own way in her own time. The freedom that HE allows you is the freedom that is letting her cope with AS and discover how to live with it and it sounds like shes learning to cope for a large amount of time really really well. Lets face us, which of us wouldn’t be stressed in that environment, I used to bite my nails and twiddle my hair during a performance, she just shows her stress in less socially acceptable ways but she’ll learn just as shes learnt to get by without all those other routines. You have such great insight into your kids, you really think about them in a way I don’t think many do and for that reason alone your kids have a far greater advantage in overcoming their problems than many others. I’m sure in another 3 years you’ll be wondering where that socially challenged 6yo went too.
Hi Merry,
I think all these ‘class’ environments demand a sort of homogenous lump of people and that always accentuates difference – not a reason not to be in them, just more of pressure for some than others. I can understand your feelings but if she made it through in that pressured environment then that’s pretty good, eh?
We had a total screaming meltdown in our house yesterday – involving stripping beds and hurling airers around – just because the special class t-shirt was wet in the machine when it was time to go. Shocked us into remembering how often such things used to happen.
From reading your blog over a couple of years I’ve got some sense of how far your girl has come. Good on her. I guess there will always be moments that smart a bit but what the hell, it’s only a dance class.
Merry,
I can only praise you for how well you have done with Maddy. I know how Aspergers and any ASD can be very difficult to deal with but you have done so in such a positive way and I look up to you for what you have achieved with her. I have alot to learn.
Sean has asperger’s too and even though he’s nearly 8 now I still get carried away when he’s been on an ‘up’ for a while, then it’s such a shock to the system when he has another downswing. It really does feel like someone has slapped you hard in the face. At least now though he actually has downswings rather than the permanent problems that I remember from when he was younger. We actually have good days, weeks, even months, which is brilliant. And of course home ed helps a lot :o)