Not just a girl with Aspergers.

Todays #10wks10yrs post is about Maddy. It’s written with her permission and explains why one of the biggest elements of our life at times through the last 12 years has almost never been discussed on the blog.

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The internet is full of support blogs about children living with Aspergers and Autism these days. They are great, amazing places to get support and understanding for a condition which defies explanation in so many ways and is still so unsupported in the collective mind of so much of the public. How many Aspergers parents, trying to describe the myriad of symptoms and behaviours their child experiences is met by “by my child does that”. How many, like me, have found themselves up against a medical wall of professionals who believe they can fend off the parents of another inexplicable child who will drain resources. How many, like me, found themselves investigated as a parent inventing symptoms for attention? Those blogs are a wonderful resource for parents who need to understand a bewildering toddlers and preschooler; how I wish I had had those to read, instead of trawling through medical papers and quizzing some of the other home ed parents I knew online who had already trodden the diagnosis path. I know that people often looked at me and thought I was just hunting for trouble, from my parents, my family and certainly friends and people who knew Maddy a little but not quite enough.

It’s nearly ten years since Maddy received her Aspergers diagnosis now. I’ve almost never referred to it on the blog for various reasons. One was that it took some family members a long time to come to terms with it, one was that Maddy didn’t in fact know about the label until recently and one was that I made a considered decision that, since she was home educated, I didn’t want her to live within the label. I didn’t want to be blogging that this had been done by my daughter with Aspergers, or that my Autistic spectrum daughter could sing or act or draw beautifully. I just wanted her to be her, not blaming her struggles on anything that would allow her to opt out of overcoming them or even put down her considerable talents by attributing things like extreme logical thinking or attention to detail to something innate about her being. After all, a good portion of anyone’s talents come due to some particular inbuilt aptitude, so why think less of your own just because they happen to come with a personality type?

This is one of the pictures that defines the time in my memory when we hit the biggest of the Aspergers walls in Maddy’s life. By this time we were well down the path of diagnosis though… so I’ll go back a bit.

Maddy was the perfect baby in many respects. She slept for hours and hours at a time. She hardly ever cried. She took what she needed and then was happy on her own until the next time she got hungry. I remember that at even 3 days old she would wriggle away from body contact in bed and didn’t much like to be held but I wasn’t to know that was anything particularly surprising. As she got older, the differences between her and Fran became more marked; she was incredibly cautious. She would never try to do anything that she didn’t know she could do. She never tried to go down the stairs, she watched people intently and then copied with a meticulous patience. She was walking by ten months and it could not have been clearer that she had studied all of us with a scientific intensity. Perhaps the strongest memory I have is of going to a rented property when she was less than nine months old. I popped her on the floor to look round and when I went back, she had carefully unscrewed every fixture and fitting from the front of a fireplace – and lined them up in a row in front of her. Another memorable moment came at her hearing test. I had to have Fran in the room with us as I had no childcare and she was sat behind us. Maddy resolutely refused to engage in the game and sounds with flashing lights ritual we had for hearing tests back then and the HV’s patiently explained to me they believed she was deaf. I said she definitely wasn’t but that she did not play like this and hated strangers. They didn’t believe me at all – at that moment Fran did a loud pen stroke behind us. Maddy whipped round from her torpid, clinging state to see what her sister was doing.

And then things began to get a little more difficult. Maddy developed a huge resistance to textures of clothing and was almost permanently naked – not so unusual. Hysterical terrified screaming if she saw a t-shirt that hurt her was less normal. She developed a panic reaction to certain foods and screamed with terror if she saw them; her diet narrowed to almost nothing. Again, ‘my child does that…’ everyone said. Well, maybe, but not to the point of only drinking milk and nothing else. At less than 18 months she was obsessively lining up toys and moving things back into the right place in the house – tidy yes? Well no, not when seeing something out of place meant she would fall to the floor screaming, kicking and retching not with anger but quite clearly with terror. She was naked, milk drinking only and withdrawing fast into herself, reduced to lying on the floor and watching only Disney films which must NEVER.EVER. stop before the end. Any change in routine, any difference in circumstance produced tantrums of a sort I had never seen in Fran – they weren’t rage, they were something else. I was pregnant with Amelie and regularly reduced to sitting astride a flailing Maddy to hold her safe and stop her from finding a sharp corner to bang her head on.

Something was very not right. She didn’t speak at all at 2, she was so full of panic and rage that I couldn’t comfort her, she was obsessed with order, familiar and certain sensations. She carried a hair clip in each hand and rubbed them for comfort – stimming, it’s known as – and was obsessed with particular ways of doing things. She spoke a little by 2 1/2, using sentences from Disney film sentences to express herself – it’s known as Echolalia – but no free speech at all. Yet she was clearly able to understand us. One day when a nursery nurse student was with us, we discussed toilet trailing over her head while she watched a film intently. I didn’t think she was ready – but Maddy, without taking eyes off the tv as she moved backwards out of the room, went and got the potty, brought it back, sat on it and did a wee. I was stunned. It was almost another 3 years before we helped her overcome her fear of using the toilet to poo. Toileting in general became an immense strain. She had huge routines involved in it, sometimes with anything up to 27 parts to going, cleaning, wiping, finishing – if the routine went wrong she would need to start again but of course there would be no wee to start with. Much, much screaming.

I sort help several times; the first HV quite literally ran away with a “let’s monitor it’ flung over her shoulder. The second doctor sent out an HV to monitor me for Munchhausen by Proxy. Then finally we began to get help. Some specialist nursery teachers visited who were able to observe her in our house. They saw the toilet routines, they saw that panic would make her resort to wrapping herself tightly in a special blanket or turn on her head till the pressure of blood running to her head made her feel better. We went on a walk and they saw how she struggled to cross roads at a place different to the ‘proper’ place, they listened to me explain how Maddy would scream till she was sick if I turned left instead of right at a roundabout she was used to being a route to a certain place. They saw how at nearly 3 she had no sense of danger about climbing a bookcase so she could ‘hang’ and relieve the need for pressure on her joints and how she would lie in the road and refuse to move if panic overcame her. They saw her lurch suddenly across a road if something appealed to her on the other side and how her strength was too much to battle.

The hardest thing for me is that Maddy is a public performer; while cuddly toys had to be lined up and counted frantically every night at home, a car driving past outside destroying her rhythm so it had to start again, she could go to my parents without those toys at all. So long as she had ‘pirate green’ a small cracker toy, or her hair clips, I could get her to playgroup – but at playgroup she could put them on the table and not use them till home time. In the car park though – I once had to call a playgroup worker back to open up again after we forgot them and I was physically incapable of bending the hysterical Maddy into her car seat to go home. But out with friends, away on a week of holiday, staying away… often all the routines and issues would dissolve, leaving me feeling like a idiot or useless mother. Or someone with Munchausen 🙁 It seemed to other people we indulged her behaviours but we didn’t. They didn’t see that we always had to schedule in a quiet week after an event while she melted down and rebuilt. I tried everything I could to coax her out of the routines, encourage her to eat food with sauces that couldn’t be divided into separate piles on her plate, or head off the panics. I couldn’t do a thing. My FIL and Max would say “well, Max/I was like this…” and I would think, ‘well, yes, I can indeed believe this of the statistics driven, information organising, maths and engineering wizard man I married who can sit in front of me and not notice I am crying’. 🙄

After all, who would believe all this of a little girl who looked so adorable?

Coping manifests in many ways but a clever, relatively socially with it Aspergers  child develops mechanisms. Maddy had the ‘keep it all in’ one plus two others. One was to watch her friends incredibly closely for cues and follow. She made it through games where she didn’t get it like this, just glancing from side to side and copying, half a pace behind. Her other was to develop a ‘game’. Casual observers would tell me she ‘had imaginative play so can’t be Autistic’ but a closer watch would reveal she always played the same game. She would find two similar things, two red things or two round things of different sizes and play the scene where Dot falls out of the sky into Flik’s arms from Bug’s Life – over and over again. Clever girl.

Back to the picture at the top. We risked decorating the house for Xmas that year; Maddy had come on lots at nursery, getting one to one specialist attention and was really opening up. We thought we might be okay to have a tree and change things a little.

Disaster. By the end of the holiday, Maddy had regressed to no words, unable to use the toilet and in fact unable to walk. All she did was sit at the table playing with that gloop, messy stuff she could experiment with that didn’t mess up her hands and didn’t ask anything of her. And it was blue, a colour obsession that was beginning that would last until Bene was born. Since then we have had very short Xmas decoration periods and there is always an undecorated room Maddy can escape to.

So where are we now?

Maddy is 13 now and life is very different. Home educating has been amazing for her and looking back, I think it probably saved her. She finished 2 years at the specialist nursery, which had brought her to being pretty much an average every day child and we were faced with a choice. The nursery said she wouldn’t get a TA at school because she had progressed so much (with a TA) at nursery that they wouldn’t see she needed it. They suggested we sent her to school for routine and order, waited till she crashed (and they agreed she would) and then applied for a statement for her.

We decided not to do that 🙄

Having a pace of life uniquely geared to Maddy has been ideal; we’ve approached stressful topics slowly and timed for her to feel ready, we’ve been able to do down time and relaxation and push her in places where her comfort zones had been exceeded but she needed to overcome it. Over the years she has just become AN Other as it were. Yes, her sisters and friends know her well and wouldn’t put her into misery or bully her but she manages very well at gym, Taekwondo, dancing, rugby and so on. The rage disappeared, toileting happened, nakedness vanished into a meticulous dress sense and style. Complicated drawing emerged of factories and processes and gradually a drawing style replaced it she is comfortable with. We’ve overcome a refusal to learn to do anything because she felt it should just come naturally and a refusal to be taught things. We’ve overcome issues about lists of instructions she couldn’t remember and helped her learn to visualise them and taught her to stop and think and slow down when panic sets in. The baby who would wince if I sung a wrong note has morphed into a young woman with an amazing voice and a natural guitar ability.

Maddy only learned about her Aspergers at Christmas, when her thyroid needed dealing with. It hadn’t been our intention to hide it from her particularly but without school to navigate, the label seemed less relevant. We had always talked through her way of being without the name and I’d planned to tell her more when she was ten but then Freddie was born and died and it seemed too much.

There are still lingering things I can attribute to the Aspergers; Maddy struggles to think on her feet or make quick decisions if there is an emergency and unlike her sisters, phonetic spelling still causes her issues. She still worries a lot and struggles to process some elements of what might be going on in someone else’s head. She tends to shut down when sad things happen and I’m not sure there has ever been anything as moving as her tears at Bene’s birth after she closed off her grief about Freddie so totally. But everyone has ‘stuff’ and the sum total of Maddy is so much more than a bundle of quirks you can say ‘that’s perhaps her Aspergers’ about. She is an incredible kid; creative, clever, thoughtful, kind, emotionally competent, artistic in so many ways and ingenious in so many others. We are so proud of her and so pleased to see her gradually making decisions about moving on to things like school. For a long time I didn’t think she would perhaps ever be quite able to stand alone but now I look at her and know that she will.