World autism awareness day

It just would’t seem right as a mother of two children with autism to let this day pass without writing in my blog.

I had so many plans to write a positive, upbeat blog about how great my kids are, how much autism has taught me and how proud I am of them.
Yes that is all true but yet ironically, today of all days, autism has hit me right in the face again.

It started off so well with publishing a video on social media that was received well. Both kids got off to nursery and school easily enough and I even got to get a hot cuppa without the phone ringing or the door bell going. Gosh, I even managed a shower!

But then my daughter came home from nursery with that look that told me her morning had been a struggle and she was right on the edge of crying. Call it mother’s intuition or whatever you like, but I just knew this was a ‘big one’. This was something that was going to take days or weeks to recover from. And I was right.

First thing I noticed was the smell. My poor baby girl had been in a dirty nappy for hours and it hadn’t been noticed. She is in a busy mainstream nursery where she doesn’t speak but complies with requests without question, and is hugely anxious about approaching or interrupting staff. So she would never ever say she needed changed. After being refreshed and fed she told me exactly where she was when she ‘went’ and what she was playing with (she is a girl of detail) and how she looked at a member of staff but they ‘never noticed me’. You see, this is autism. She has no idea, even at 5, that the staff can not read her mind. They can not understand that she needs changed simply by her looking at them. And she did say they never even looked at her back as they were ‘busy like they always are.’ So my baby just carried on with a soiled nappy on hoping someone would notice.

It came to snack time. She rarely takes snack but staff are trying to encourage her more. So they succeeded and she sat reluctantly on a chair even though this was uncomfortable. Why? Because the ‘lady told me to sit down’. She was then offered strawberries which she took because she was told to. But she hates strawberries. They make her sick. So she naturally left them on her plate. Staff (who understandably have no knowledge that these make her sick as I forgot to mention it when enrolled her 18 months previously) encouraged her to eat them. So she did. Even though they make her sick. Why ‘because the lady said to eat them.’ Her autism makes her compliant to rules, even if those rules mean she will be in pain and discomfort. She has to obey. That is the rules. That is what you do.

At circle time she went to the carpet. By now she was sore and very reluctant to sit down. So she stood and looked at a member of staff. A silent plea for help. A silent hope that they could read her mind. They told her to sit down. So, despite the pain this caused, she sat down. ‘It made me sad mummy’. Oh baby, it makes mummy sad to hear this too.

She then sat on a bus for 45 minutes to come home. Still no-one noticed. Until finally she got home and it all came out. And shortly after telling the story she was sick. Then sick again. And again. ‘I ate strawberries mummy and I always get sick when I eat them.’ She knows. But would she do it again? Yes she would. Because she can’t seem to break the rules. If someone tells her to do something she will. She is obedient without question, even to her own pain.

She won’t be back to nursery for weeks now as she will be off sick tomorrow and maybe the next day too. And then the schools are off on holiday. Perfect timing as she never wants to go back.

I thought we were getting somewhere. I thought we were getting closer to going to mainstream school. Today reminded me we have such a long way to go yet.

I so wanted to be upbeat on this world autism awareness day. But autism doesn’t take a day off. Autism hits you when you least expect it. Autism can still be hard even when you accept it and embrace it head on.

This isn’t about the nursery getting it wrong today. Things happen. People are human. And they can’t be mind readers like my daughter thinks they are. This is about a little girl who is vulnerable, hurting, and confused.

This is about a little girl who is now sick. This is about my heart breaking once again. This is autism. On world autism awareness day.
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What do you mean she has autism?

Sometimes a child’s disability can be so obvious.We know a child confined to a wheelchair requires support, or a child who is blind or wearing hearing aids may need extra patience and help, but what if the child is accademically able and looks like any other child? They don’t flap, they follow instructions and they are in mainstream education. But stratch beneath the surfice and you might just see that they DO have a disability. Often a hidden disability at that: they are on the autistic spectrum.

This is my daughter:

ImageShe is called Naomi and she is almost 5. She is the youngest of twins and her brother has classic autism, neurofibromatosis type 1, seizures, global developmental delay and a visual impairment. So she has a LOT to deal with! Her brothers difficulties are very obvious so her challenges so often get overlooked. She is so clever, so verbal at home and so co-operative, that her disability gets hidden.

What do you mean she has autism?

She doesn’t flap like her brother, she looks at people when they are talking to her, she goes to ‘normal’ nursery, she’s a girl!

Well, yes girls can have autism too! And not everyone with autism flaps, or lines toys up all day or has a learning disability. Millions of people around the world with autism attend mainstream school. My daughter may be one of them next year.

But at almost 5 she is still in nappies. And until two weeks ago she only ever described people by the clothes they were wearing or as being ‘horrible’ or ‘nice’. In the two and a half years she has attended nursery she has never mentioned a child by name: until 10 days ago. She says she has a ‘friend’ but has only ever whispered to him. She plays beside him, not with him. He just happens to be in her group in nursery and likes similar activities to her. So in her mind he is a friend.

This last week we arranged for her to go on a play date to her new friends house. At first we had to stay. She eventually moved from beside me and went to the play room adjacent to where we were sitting. But she could not bring herself to talk to her friend. Her anxiety level escalated to the point she burst into tears. She had absolutley no idea how to socially interact with another child. It does not come naturally to her at all. And the different house and different toys were overwhelming.

With support and a lot of reasurrance she stayed for an hour without us. But she never spoke to anyone. She was no trouble but she didn’t play with her friend at all. Or his little brother and sister. She just found toys and played herself. She set up some toys and looked at them. We hadn’t told her new friend’s mum about Naomi’s challenges as we wanted to give her a chance to be herself and be just like any other 4 year old. But when we went to pick her up even the mum commented on how Naomi seemed very shy and withdrawn.

What do you mean she has autism?

She had no idea. Because the spectrum of autism is so big, because we don’t always think our child’s friends could have such a thing, because awareness isn’t at the level it needs to be yet, because she is a girl!

But yes she has autism.

She struggles to communicate outside of the home environment due to extreme anxiety. She rarely ever speaks outside the house unless mum is with her and even then only to people she is relaxed around. She has selective mutism. She has no confidence to approach people so can not communicate a simple thing like needing help to get her hands washed or her coat buttoned up. She is verbally able and understands almost everything but can not make that step to initate communication herself. She just freezes.

She get anxious and stressed at routines changing. Not quite to the same extent as her brother who could not, for example, have a bath in the morning because he would assume it was bedtime, but more things like changing teacher at nursery or coming home with mum rather than on the nursery bus. She cries if you change her nappy anywhere else other than on the couch she is comfortable with. She only likes to sit in one place in the lounge. She will only eat if sitting at ‘her’ seat at the dinner table. And certain things can only be done by mum, and other things only done by dad. Because that is just how it is. And anything else brings tears and heartache like you have ripped her world apart.

She plays the same games over and over. She will only allow things to be done a certain way. In her train set for example there can only be one train on the track at one time. It must do the entire loop of the track and then the next train goes out. And this gets repeated everytime. She could happily watch the same dvd’s for hours. If she plays with her toy kitchen the exact same meal is cooked 25 times or more in the exact same way. Toys often get set up and then just stared at.

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She had the order of those characters memorised and if one was moved she would burst into tears. In nursery her anxiety is demonstrated by sucking on her tongue continually like in this picture:

ImageHer co-ordination and gross skills are behind too. She can’t kick a ball, or climb or balance on one leg. She isn’t able to dress herself and never wants to run anywhere.

And she has sensory issues like so many others with autism too. Clothes have to be soft and fluffy and she gets very upset if she has tights on as the toes just never ‘feel right’. It is the same with shoes. They are too big, too tight, too small, too hard and just not comfortable. And she will become very aggitated if her pyjamas or top do not cover her arms, no matter how warm the weather is.

She is a very fussy eater. The skins of chicken nuggets, the bread covering of fish fingers, sausages without the skin, a little mashed potato, and the chocolate spread licked off of a sandwhich is her main diet. Chocolate buttons for a treat but never any other type of sweets and only orange juice or milk to drink.

And noise just soars her anxieties to record heights. If there is one thing she hates more than anything it is noise. And children running around. And going barefoot. So soft play is like a form of torture for her. Bouncy castles are another fear. And dogs, especially ones that jump up her or bark. Crowds. Intruding on her space. Scary TV programmes with loud animals and people with swords etc. The list goes on. And her anxieties become higher and higher. So understandably she needs a lot of patience and reasurrance.

And she lives by rules that can not be broken. Her brother must sit behind the driver in the car. Dad has to go out the back door of the house first. Her nursery bus MUST come before her brothers school taxi. Mummy must answer the phone, not daddy. If it is a call centre you must still say ‘hello, who is it?’ even when you know as this is the rules.

But you would never know by looking at my beautiful girl. She is sweet, quiet and no trouble to look after. She will look you in the eye when you talk to her and she is academically able. She is loving, caring, funny and brings me untold joy. She adores her brother and has so much patience with him. She teachers him and cuddles into him and talks to him even when he can’t say anything back. She is his carer, his guide, his support and his best friend.

All while having autism herself.

And that makes her one very special girl indeed!

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What do you mean she has autism?

Autism is just part of her. Have patience and understanding with her but never ever underestimate her! This girl is very precious indeed.