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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7 thoughts on “World autism awareness day

  1. Oh your poor girl!
    My son has Aspergers and is now 13 and is the same way. It has got better, as his high school are working flat out to ensure they know him and his signals. He still won’t challenge teachers or peers. He is a sensitive soul – he can’t understand why people would want to tease or hurt another person. Many foods can trigger his CVS (cyclical vomiting syndrome) and he used to eat them even though he knew he would end up in hospital. Now, he can say ‘No, I can’t eat that or I will be ill’.
    I feel your pain. Hang on in there!

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  2. I think you should be reconsidering whether this school is properly equipped to take care of your daughter if the staff have neither the time nor the understanding to take care of her needs. If this were my kid I would probably be camping outside the education head’s office, demanding PROPER provision for them. Remember inclusion is a 2 way street. If they expect your child to be in the mainstream then the mainstream has to be properly adapted to fit with their needs, NOT vice versa.

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  3. What a dreadful experience for your daughter, but a really sickening one for you. I hope your daughter can put this behind her but I’m not sure you can. I hope she feels better soon.
    For what it’s worth this was an excellent post. Autism is not easy and bad days are very much part of it. Those of us with children without autism haven’t a clue what you and your children face. Thank you for sharing and enlightening people like me.

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  4. So sorry that this happened to her. This is about autism but they should have noticed too! They are there to care! God love her and the fact that she knows all about what’s happening makes it worse. Thanks for letting us understand.

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  5. My poor wee precious Naomi. Thank you for sharing Miriam. This is what living with autism is all about. A confident little girl at home but so anxious when out of her security zone. Lots of love and prayers coming your way wee precious. Get well quickly.

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  6. I know it is autism but still someone at that nursery certainly should have noticed she needed changing. If you smelt it than so should they. I hope you inform them of what happened … and remember to tell them that she can’t eat strawberries.
    Does she tolerate anything with strawberries or is she basically allergic to them? If she is allergic do you think you could teach her to tell an adult that so she does not put herself at risk of being sick again whether at school or anywhere else?

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