April and Autism Awareness month looms – 31/3/15

By | March 31, 2015

We zoom into April tomorrow –  is it just me who feels this year is flying by – and Autism Awareness month, with World Autism Awareness day on 2nd April.

This will be the third year that I’ve been blogging and April brings a chance to (hopefully) spread a little bit more awareness of an invisible disability that touches so many families and communities.

I have to admit, I wasn’t very aware of autism until I was childminding and a mother phoned me after a day’s care for her son.  She said that he had autism and was very into his routines and that’s all she said about it.  I got a book out from the library and then she phoned again and said she’d managed to change her work days around and didn’t need care.  That was it really until D started in nursery and it became very obvious, very quickly that she was “different” to her peers.

I was childminding a little girl who was two weeks younger than D, who went to the same nursery and she (the girl) would chat away about when she was a baby and what her mum and dad were doing, I just assumed that she was advanced in speech as opposed to my girl, whose speech was very stilted, who flapped, who didn’t like change, who couldn’t tolerate anyone near her, who couldn’t “play” and needed lots of bags full of small things just to get her through the session.  

When she’d go in, that is.  

Many a time she’d bolt and I hare after her, ignoring the comments from the other parents “oh, look D’s off on one again” particularly stuck.

We started the diagnosis process and, by now, I’d researched and we’d accepted that, yes, it was more than likely that our girl was autistic. I say accepted, because it was almost like griefing for the child we wouldn’t have and becoming absolutely even more determined for the child we did have.  Our D.  

Did we love her any less? Of course not.  

Did it make us want to protect her?  Yes. 

Worry about the future? Big time.

Once a diagnosis was received, we started battling (and I don’t use that word loosely) for support and a Statement of Educational Needs.  It wasn’t easy.  There was times when I felt that she wasn’t treated as an individual, but more of a budgetary figure.  Times when I couldn’t get through a meeting without crying, tears of worry and of frustration and all the while, D was struggling in the mainstream environment.

We received her statement at the second attempt and immediately requested a transfer to SN school (this wouldn’t happen without a statement), we were told it would be at least six months away but a place suddenly opened up and we waited six weeks in the end.

From that very first day at SN school, D looked happier, the smaller class size/higher staff ratio suited her.  She was able to flourish and progress.  She has learnt to read and loves reading, writing is more difficult, she finds it challenging which makes every little birthday/Christmas card very special.

Do I still worry? Of course.  She’s nearly 11 now and she wouldn’t be able to go to school forever.  Her road skills are non existent, as is her sense of danger so I can envisage our little walks when she’s holding onto me, us stopping intermittently because someone is walking behind us and it scares her, continuing.  Some form of independent living would be beneficial eventually but then I’m very much aware that when she’s anxious and over wrought, it’s only me she’ll talk to and sometimes her worries can take days to manifest.

It’s difficult.  We have to go past her old school every day and the children run past us, laughing, shrieking to each other and .. just being children.

We avoid busy environments if we can at the weekends because D is unable to tolerate the hustle and bustle, I couldn’t give a stuff who comments but it does concern me that there is still so much intolerance, that for all the tweets and wonderful blogs around, people will still prefer to go on their first impressions and see a “naughty child”, rather than one completely overcome by the many sights, sounds and smells that a people-packed or unfamiliar environment brings.

What’s the answer? How can we achieve a greater understanding and acceptance of a mental disability, as opposed to a physical one? 

The only solution is greater awareness but how to infiltrate that into individuals who are unwilling to accept that their first perception may be incorrect?  Everyone leads busy lives.

Prejudice is everywhere.  We’ve experienced it with family members so how can people we don’t know accept autism?

Just keep, keeping on I guess.  Gently but consistently.  Trying not to worry too much and definitely not sweating the small stuff.

  

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8 Comments

Louise George on 1st April 2015 at 9:33 am.

Thank you for sharing your journey and giving an insight in D’s world – the quote you finished off with is such a useful one for helping those of us who have less experience of life with autism to try and understand a little more about it. It is so frustrating to have to battle so much for what your child needs – I’ve experienced a little of that myself with Jessica and her heart condition although thankfully our preschool is very helpful and is already starting to get the ball rolling with regards to a educational health plan for when she starts primary school So glad that D is so settled and happy in the school she now attends.

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Jeannette on 24th November 2015 at 4:24 pm.

Thank you, me too. As long as D and T are happy in themselves, nothing else really matters x

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Sarah MumofThree World on 1st April 2015 at 3:16 pm.

It’s great that you’ve shared D’s story. It’s stories like this which will help people to understand more.

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Jeannette on 24th November 2015 at 4:23 pm.

Thank you, I hope so x

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Caroline on 2nd April 2015 at 1:29 pm.

Lovely post and really good to read D’s story, and your story as there is no doubt it has been a challenging road for you at times. I think you do amazingly and take so much care over your kids needs all the time. It must be hard to feel judged all the time, and I hope that gradually there will be less prejudice about it but it will be a long road I think! xx

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Jeannette on 24th November 2015 at 4:23 pm.

You’re right, Caroline, it’s a long road but we’ll get there x

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Jane - Our Little Escapades on 7th April 2015 at 6:59 pm.

I’m so glad you won the battle for D, but it makes me sad that it has to be a battle. The future scares me as I think our battles are going to get worse. I really hope that in the future people are more understanding so that we can know our children will be safe x x x x x

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Jeannette on 24th November 2015 at 4:22 pm.

Me too, I just want our lovely children accepted x

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