We are all made of stars.


Last night Bratty got the yips. By that I mean she was having an "episode". The kind that seperates the classic autism from the autism plus hyperactivity kids.


Nothing was right all day.


It was sunny but she kept making us take off our sunglasses and hats as we sat in the garden.


I couldn't put washing out when she was watching; or bring it in if she was nearby.


And as Boo had woken up with a tummy ache which he quickly resolved; (blerch) I had a lot of washing to do.

Mr Hammie took her to the beach, Chicken nuggets and then shopping in the morning. And I took her swimming and for more nuggets in the afternoon. We did everything right.


And yet at 9pm she was screaming so loud at her computer we took it off her and sent her up to bed.


Then she really got going. There are jet engines that are quieter than my Bratty girl when she has a mood on. So I went up and stayed in her room trying to calm her. I have learned to bring my MP3 player with the earbud headphones with me so while Bratty attempted to break the sound barrier, I listened to Moby telling me that we are all made of stars.

Later while Mr Hammie took a shift of scream therapy and eventually got her to sleep. I ate my cold dinner and looked out at the clear night sky and wondered. Was Moby right? Are we really all made of stars?


Because, while disability is largely to do with our expectations of what we should be capable of; and anyone with an aquired disability will feel that most poignantly, it is also about the limitations of our environment. And our environment is shaped by our community.
Other people.

Being deaf would have been a real disadvantage for primitive man because you needed to be able to hear predators to avoid them, and to recognise when prey was nearby, in order to survive.
But understanding the nuances of speech would have been less important. At the end of a busy day of running away from things that could eat you, and chasing after things that you could eat, you were unlikely to sit around in the cave coffee shop discussing your feelings. You just went to sleep and got up again the next day and got on with it.

In today's society things are better and worse. Technology has made it possible for the hearing and vision impaired to see and hear. The deaf can sign or lipread, The blind have assistance dogs. Physically disabled people can use wheelchairs. People with communication challenges can text or email.

But there are still enormous challenges for people with disabilities and special needs and while these are largely environmental; there is still the issue of Attitude.

Fact is, the world would be a lot more accessible for everyone if we could all just adjust our attitudes and make equality and inclusion a priority.
What is the point of listed buildings if not everyone can enjoy them? Yes it is important to respect history, but also to learn from its mistakes and if that means making a wider doorway, or building a ramp or a downstairs toilet then we should do it.

By the same means I wish people would look at the world from my point of view. The parent of two children with autism.
When our children were very small I remember trying to make friends and socialise with other parents and visiting their houses. As our children's problems developed, we found this harder and harder. Some of them had unfenced pools, all of them had valuables and breakables that we couldnt always afford to replace. It just got too stressful, so we stopped.

And not just friends either. I remember going to an early evening barbecue with my sister's family in a local park that wasnt fully fenced but was bordered by a road and a creek.
I spent the entire time running after Boo while everyone else just relaxed and chatted and cooked their sausages as their kids played nearby. After the third run off into the dark I put the kids in the car and went home on my own. And cried. I was angry at what I percieved as their indifference to my situation; "why couldnt they make allowances?" But the truth was that I was only just learning to accept my limitations then myself, and I was a long way from adapting to them.

Nowadays, as you know from reading this blog; I have learned to adapt and to shape the world and my kids behaviour to make it easier for us to get through life.


That can mean a lot of preparation at times, it can also mean avoiding certain situations, or asking others to make allowances for us. I read a discussion board recently where a parent seemed shocked by this suggestion, implying that we should just expect to wait our turn in every situation. I assumed by their tone that they thought I was cheeky for suggesting I had a right to avoid queueing, and that I should just accept the consequences of a long queue. I couldn't decide if this person was simply too meek to ask for special assistance, or if their child's behaviour wasn't ever that bad.

For me, asking for help in a potentially challenging situation is essential. A long queue with Boo and Bratty will mean a perforated ear drum from Bratty as she screams and a dislocated shoulder as Boo swings off my arm nagging to get whatever we are queueing for. We might just as well stay home for all the pain it causes. Imagine all the situations that would exclude us from? - holidays, shopping, even buying take away food.
So for me asking for help in these situations is no different to a blind person asking to take your arm to cross a busy road. If we were unwilling to do it, we would be left standing on the kerb of life, unable to fully participate. By sticking our necks out we enable ourselves and our children a fuller range of experiences.

It would be easier if there were no queues, or a special queue just for special people! Just like there are ramps and wider doorways for the mobility impaired. It would be even better if there were no houses with easy to open windows and doors, no balconies with low safety rails, no cars on residential streets going over the speed limit. No friends or grandparents with expensive and breakable trinkets or easy to stain soft furnishings and expensive facecreams in their easy to reach bathroom cupboards.
It would wonderful if the world was fully fenced.

But it aint. So until then I have to rely on the kindness and understanding of complete strangers, and friends and aquaintances to make allowances. To watch out and be alert.



So remember that this life of mine could happen to anyone. We may all have to adapt to little changes and adjustments . Just because you are riding along on easy street today, doesn't mean you won't dive into a shallow pool tomorrow, and come up to the surface needing A Lot of Help.



Because as Moby says, we are all the same underneath. We are all made of stars.

Comments

daizy said…
Hammie, you write with such clarity and honesty and you have a great sense of humour. You are a truly wonderful mother. daizy.
K.Line said…
Hey Hammie: Just read this... I have to say you do impress the crap out of me. What beautiful writing - and how well it expresses all the things you're feeling and the life you are leading.

When I'm reading your posts, I often relate to many things within them. (My own child is incredibly strong-willed and, when she was younger, there were many instances when she had tantrums that were so significant, anyone I was with was just in shock. 90% of the time she was angelic. But the other 10%, absolutely possessed, it seemed.)

Obviously, what you are living through is much more extensive, much less forgiving than my scenario. And you are managing with such fortitude. Your love for your great kids shines out - just as strongly as your weariness.

The point is, keep writing. It's doing great things for others (I'm sure so many people living through the same thing are insanely grateful that you have your voice) and I sense it does great things for you too.
Hammie said…
Thanks K-line. I just re-read it myself. I appreciate the encouragement as I really do want to keep writing, but sometimes it all gets too intense and I think "who am I to talk about this stuff? I'm still not getting it right"
If it is any comfort, your strong willed daughter will do well in life. As long as she learns to use her charm in equal measure. I suspect there are times ahead when you two will clash again. But you can be reassured that it will make her a very strong person.
Thanks for visiting I had forgotten about this post. It was good to listen to the song again too.
xx

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