It was the other night, after having a major argument with my oldest brother, that I realised that so few people really GET what we go through and have endured on our travels with autism. Or why the fight for this GPS system for absconderers is just so important to me.
How many people would know just what it is like to have a child missing...let alone one which can't even say her own name. For those who havent been there, its like losing a much loved dog only about 10000 times worse. The feeling of total panic. fear of finding them dead, fear of some unscrupulous person picking them up. Its the worst possible feeling. When Stef went on one of her major wanders and turned up safe and well, I threw up for about an hour, had the shakes and just felt so awful. I think it was the overload of adrenaline.
Some family members just don't get, that a family bbq in a park is just too hard for us. Yes, Stef and I go out and about, we go to the markets and to parks, shopping, even to the show, but throw in trying to keep her safe and having conversations, now thats something I just can't do. I cannot afford to be distracted one little bit when we are out, especially near water. She slips away with the stealth of a ninja. One of us always has to be 100 per cent on guard duty. I would never trust anyone but us to take her out and about...our radars have been on for so long, it almost becomes second nature to keep an eye out for her at all times. No one ever gets a 100percent conversation unless we are at home and we know its safe.
People also don't realise that I on lots of occasions am extremely sleep deprived. I crash out at 9pm...sometimes its because I get up so early, but at others, its because Stef has woken up for parties at 1, 2 or 3am...running through the house turning on every light and the tv. I find I have to get up, just to keep her a little quiet so that the rest of the household can sleep. Steve drives a long way to work, and I worry that if his sleep is disrupted too much, he will fall asleep at the wheel. Sleep disturbance is a huge part of autism. Even Brent finds sleeping difficult and is often still up at 1am. I often hear him through the bedroom wall, tossing and turning.
Oh and then there is the additional housework around this place. Stef has no concept of personal hygiene or helping to keep the house clean..come to that none of the kids really get the whole keeping the house clean. Stef finds eating at the table with everyone else just too loud, and a little stressful. She grabs her food most of the time and runs off with it...leaving the scraps anywhere. A packet of chips means chips all over the furniture, the floor, everywhere. Then there is the raiding of the cupboard.....finding chocolate chips everywhere, flour, rice, and whatever else she can get her hands on. I frequently shampoo carpet..at least every 6 weeks, and the couches. I vacuum nearly every second day and wash floors two or three times a week. The amount of washing is huge. Stef has bowel issues which means she leaks constantly......nothing in this place to have to change her completely 3 times a day. Oh and then there is the playing in the pooh.....eww. I probably do 3-4 times more housework than the average woman with two kids. Stef gets into so much stuff!
There is the extra help needed for homework, and to help stef with getting life skills. Its never ending.
Why am I telling you all this....to give you some understanding of the true bits of what autism means for some of us. To help you understand how such tragedies like Kieran's death can occur and why we need every bit of help along the way that we can get and that we simply don't get near the help that we need from the support services.
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