Definitely moving forwards – Autism Awareness Month – Day 3 of 30

We have a couple of canvas prints of the children on the wall in our living room, one of the three of them and one of T and D together, I love the latter one especially as he has his arm around her (you can just about see this) and they were both looking at the camera. I then noticed the difference in facial expressions on the first one and it made me look through some more pictures.

I noticed that in the majority of them D wasn’t smiling and in a lot of them, she was squinting at the camera – anticipating that flash as the camera look the picture. This was evident in a lot of the pictures and from an early age.

Got me thinking. Was she born with autism or did it develop? Let’s go back a while…

D was born at home, in my bedroom – a planned home birth – 6 days early. I had had a fall the week before (fell up my back step) and there had been a chance that she would have been an emergency caesarian, her heart rate was very high for a few hours but it settled and I was allowed home and gave birth 6 days later – would that distressed state in the womb have contributed?

Labour was manageable, with just gas and air. I had dreadful sciatica in my legs throughout but that was the same in my previous two labours. There was no pushing time. Once she was ready, she was out! Much to the amazement of the midwives. 6lb 12oz birth weight.

First few days, she mostly slept and fed. Wasn’t able to feed her myself as I had to be on antibiotics as soon as she was born, I had grazed one of my legs in the fall and needed some medicine to combat the infection that was building up.

The first few months went by in a haze. But we did notice that it was only me that she would tolerate having a bottle from, going in to do the night feeds or pushing the buggy. Anyone else – even Hubbie – would be screamed at.

Later on, she would always have to have a certain toy with her when we went out. It was plastic peas and a plastic asparagus stick from ELC, always had to be held, always had to go with us, terrible trouble if they were dropped or lost. We would always have to go to the shops the same way too, she did not like anyone walking behind, alongside or in front of the buggy – apart from me.

It was exhausting caring for a young baby and T – there’s only 18 months between them – especially as D would not tolerate anyone else caring for her.

Nothing was picked up at 6 month check, in fact the health visitor was more fascinated by the fact that T could tell her all the football team’s badges at 2 years old.

D didn’t crawl, she used to propel herself along with her arms, with her legs in a yoga position. She walked the day before her first birthday.

Her 2.5 year check didn’t highlight anything. The doctor almost used a tick box and if he heard her say one word, it was “she can talk, tick”. By then, I was childminding too and had a girl to look after who was a month younger than D, her speech was far more advanced – D’s was very stilted – and I remember thinking “I hope she catches up soon”.

And then something happened which I think brought her autism out more prominently. D started having febrile convulsions, absolutely terrifying to watch and a completely powerless feeling as a parent. Her body didn’t seem to be able to cope with a raise in temperature, such as the beginning of a virus and she would black out. We were experiencing one every two weeks at one point. Quite a few overnight hospital stays. The most serious one started in the supermarket, the staff took us around to the surgery and she was unconscious for 30 minutes. The doctor calling her, trying to resusitate her. I remember the ambulance trip, feeling absolutely terrified of the implications of a half hour blackout. The hospital wouldn’t MRI scan her though, just sent us home the next day. I’m sure that episode didn’t help. The only advice we were given was calpol and ibuprofen as soon as her temperature was raised, and any further blackouts, bring her in if they lasted over 5 minutes.

She started at mainstream nursery and very quickly they picked up on the fact that she preferred solo play and her speech was stilted. They referred us to a speech and language therapist who not only asked about family background etc but questions related to her habits, favourite toys etc. I came out of there thinking “why was she asking about toys, why asking if she liked to carry things around with her”.

Started googling some of her questions the next day and “autism” kept coming up in the answers. It was as if a lightbulb went off in my head, suddenly the flapping hands when she was excited or anxious made sense, the pigeon-toed walking, the solo unimaginative repetitive play, the lack of empathy if anyone else was upset – it all added up.

I phoned the speech and language lady to ask her opinion, she was very non-committal and said she was referring us to a paediatric doctor. This was all during the school summer holidays so hubbie and I discussed it at length, cried, grieved and knew that we had to talk to nursery as soon as term started. Which I did, through tears.

D was officially diagnosed three months later, at the age of 4.5 years with autism, delayed motor skills and heightened sensory awareness. It took a further year to get her statemented, at the second attempt.