I still remember bringing home our second daughter. I sat holding her at the kitchen table next to the window. I remember in that moment knowing, absolutely knowing, she was different. By the time she was 4 days old she would wriggle and writhe around, clearly unhappy, when she was being held. By her first week she was refusing the breast as that required way too much touching. By 3 weeks we had found our groove – she was happiest in her rocker (though we couldn’t turn our back as her loving 15 month old big sister was determined to feed her biscuits) or bassinet or pram. When being fed with someone holding out a bottle so nothing was touching her. She hated being changed and would only tolerate a bath if you just lightly held behind her head.
At our 6 week check up I asked if there was anything wrong. My doctor looked at me like I had two heads. She was perfectly healthy and by all accounts “normal”.
From that point on I had to redefine what normal actually was. She screamed whenever someone touched her, which meant she screamed a lot (her big sister was a big snuggler). She was scared of my mum (who usually forced affection on her. Her sister was advanced for her age (at least compared to other babies and what the books said she should be doing) so when our second was talking in full sentences by 18 months old we really didn’t know any better. Until our visit to the maternal & child health nurse…who asked if she was talking yet. We said yes. Then she asked what words she knew. At that point we were confused. Of course my baby girl answered that question when she asked her dad “Dad can I please have my sandwich now?”. The nurse looked like she was going to fall out of her chair.
Around this time her OCD tendencies started to come out. She would “read” the same books over and over and over again. If her routine was disrupted she would melt down. Then came “clifford the big red dog”. My brother popped in to take them shopping for an xmas present. Our eldest picked some princess thing and I was hoping my brother would get our baby a trike…but the second she saw clifford there was no hope of her picking anything else. She loved that thing so much. Even though we had a no toys when we were out policy we usually took clifford in one of our bags just in case. When she would melt down she would run to her room with clifford and hide under the blankets with him. Nothing I said or did could ever comfort her or calm her down. She just needed to be removed from all stimulation.
While she was able to talk (quite well), she would often freeze when she had to communicate that she was upset or in pain. We took her out of daycare at this point (she was only going 1 day a week) after she almost passed out at lunch. The kids kept getting up and down and she was at the end…the table pushing harder and harder against her but she said nothing. When she was starting to turn colours the teacher realised but by then she was black and blue. When she would get upset I discovered she wouldn’t cry until I actually said “you can cry if you want to”. Then she would bawl her little eyes out.
By 2.5 we were a mess. Her father and I were fighting constantly about her. I had figured out by then talking, trying to hug her ect. when she was upset made things worse. He refused to believe he couldn’t “fix” her. I had two newborns to look after and then moving interstate (the biggest upheaval to her routine ever) and having to live with the inlaws til finding a place and I was getting almost no sleep. Moving into our own place eased things a little but by almost 3 things were so bad that our lives revolved around her. I often had to call someone to get our eldest from kinder as she would be melting down. If no one could get her I had to walk the 20 minutes there and back dragging her while she screamed, which would set of the twins.
I cried. A LOT! She was so bright she picked u[p everything almost instantly. She was reading on her own. She loved food but wouldn’t eat or drink anything green (not just green vege – even soft drink or jelly or lollies). She even toilet trained herself at 2.5 just because her sister was starting (and never had an accident….EVER).
But oh how I loved her. Her older sister was the golden child. The one who loved everyone. Who was always happy. Who was daddy’s little girl. Who could go anywhere with anyone. But my baby, well she was not like her sister. So it was me and her against the world. Anyone who said or acted badly toward her got my wrath. I knew she was different, but why couldn’t everyone see the wonderful? To this day she still makes my heart sing when she talks to me about anything and everything.
I had confided in my nana the most (a seasoned preschool teacher) as she didn’t live near us and didn’t favour our eldest like everyone else. We would talk about how similar my cousin was to our middle child. Then came the call. “I thought you might like to know, because of how we are always saying how similar they are, that your cousin has just been diagnosed with Aspergers”. What? What the fuck is aspergers? Is it some fatal disease? Is he going to be ok? Is there a cure? is there medication? My poor nan couldn’t answer anything I asked, except to say “It is on the autism spectrum”. Straight away I went to bat for her – she isn’t autistic. She can speak, she can feed herself, she isn’t violent. But the seed was planted. The more I read the more she seemed to match this aspergers thing.
Then things got worse. Her obsessive behaviours became almost unbearable. We could barely leave the house with all the things she needed to do – in a specific order – before we could leave. Then she started saying “If I don’t do x, x and x I will die”. She was barely 3 years old. Aspergers and OCD go hand in hand so it was off to the doctor to get a referral to a paediatrician to get a referral to an autism specialist. 8 months later we had our first appointment. After the behaviour observation followed by a massive questionnaire I was told “she is likely on the spectrum, but we don’t like to diagnose girls this young…she could just be shy”. 8 fucking months and no answer.
It was time to decide whether or not to enrol her in 3yo kinder. How would she cope? At this point I realised I may never be able to send her to school. She can’t handle being told what to do (note: she has always been able to follow the rules but she can’t stand being told something she already knows). How would they cope when she had her meltdowns? After a long discussion with her teacher we decided to give it a go. She loved it so much! They were fabulous when it came to structure so she was never left wondering or stressing about what was happening next. They helped her change her routines from unhelpful behaviour (collecting rocks, sticks, bags ect. before we could leave) into helpful routines like socks, shoes, hat, bag. At 4yo kinder we saw her make her first friends. Years of worrying and crying and stressing that she was going to be alone were over. Her 5th birthday party ended up with over 30 kids!
As everything was going reasonably well (we still had meltdowns and OCD issues) we sent her off to school.
At this point I had pretty much read ALL THE INTERNET on aspergers and had accepted that was just a part of who she was and jumped very much onto the “aspies are awesome” bandwagon. I loved her for who she was and I got her. I knew when to back off and when to dive in to save her. Her father, however, was still in the “I will fix her” stage. More fights. More yelling at him because he just couldn’t accept it and we didn’t even have a diagnosis.
Eventually he came around…probably when she was 8, and as harsh as it is to say, it’s more she came around to getting used to why he did and said the things he did and learning to ignore him.
She was doing well at school, she had friends and things had settled down. I don’t need the diagnosis. She isn’t a label. Why bother? Then we started homeschooling and she started to excel. All of a sudden she was able to learn at her level (which was often well into high school…she was only in grade 3). Then I noticed all her friends were boys on the spectrum. It wasn’t an austism/aspie meet up. They just naturally grouped together. She had friends who got her and she got them. It was awesome. Things were working out just fine.
A few months ago she asked me why she was the way she was. It was heartbreaking and she was so confused. She knew she was different, but she didn’t know why. So I told her about aspergers. With each point I made she was all “hey thats just like me”. But I also told her she had never been formally diagnosed and then asked her if that was something she wanted. She said she did and after asking around we got a recommendation to a psychologist in the city who specialises in aspergers in girls. As she got older the traits that were apparently signs of aspergers became less and less…but when I look at the traits of aspgers in girls (which is far less common and generally more mild – http://www.tonyattwood.com.au/index.php?option=com_content&view=article&id=917&Itemid=720 is a great article on women & girls with aspergers) she once again ticks all the boxes. So next month we are off to get the official word.
While I have always been in her corner I have had my own struggles with acceptance. The most prevalent being her hair and clothes. While she is a girl (and I am now confident she isn’t gender confused or born as the wrong sex which was something I thought might be our new “normal”) since she was around 4 she has leant toward dressing more in “boy” clothes. The more freedom we gave he in regard to clothing and hair the more “boy like” she seemed to be. I would try on “special” days to force her into a pretty dress or try to do her hair. I felt like I was loosing my daughter – which I now think is the most ridiculous thing I have ever done/thought. Every time she had her hair cut she cut it as short as I would let her. Just 3 or 4 years ago she had bum length hair. A beautiful white blonde beautiful mane. Then it went to shoulder length, then ear length. Then it was dyed red (our first rebellion when we left the school system which forbid dying hair). Then it was purple. Each time watching this beautiful, unique girl emerge more and more confident and self assured. But I still couldn’t let go of that beautiful hair. Then she got some money for xmas and asked if she could use it to get a pixie cut. After watching her become so self assured and comfortable with herself and her quirks over the last year I agreed. In the end we paid for it but watching her strut in after her hair was cut was just what I needed to finally accept my beautiful daughter just how she is.
Today I am a proud aspie mum. She is divine. I love her from her spikey hair down to her abnormally large feet. I love that she wears a top hat and tie everyday. I love that she wears steampunk goggles as sunglasses. I love that she knows she is safe and loved and can be who she is – and that includes not hugging anyone in almost 2 years. I love that she is fearless. She will try anything once. I love that she can remember conversations we had when she was two. I love her so much that sometimes it feels like my heart will burst out of my chest. I love that her brain works differently – it is an interesting brain and seeing things from her point of view is often amazing. While I don’t believe in god or anything like that, I do believe we are made the way we are for a reason. Having aspergers or bipolar or diabetes isn’t “wrong”…it’s just different.
Now where do I get the “aspies rule” t-shirts?