I thinks it is one of the thinks you need to have been through to understand
I understand which is why I never argue the toss in these kinds of threads because for the most part people dont have much of an idea re autism at this end of the spectrum along with other co-morbids that will more than likely come into play once a person is older. To be frank I don't talk about it to people who are not part of our family and friends or daily life because its horrific and there is not a thing we can do about it. It is what it is and I can safely say that at 26 my sons brain is too big for us and we are well and truly defeated.
My sons life is far from the life I thought we would have when he was little. All we can do for him is give him as comfortable and happy life as possible and save him from himself. We also have to save me and his full time team of 2-1 round the clock carers from him as well on a day when if its not his frontal lobe epilepsy causing the most awful self harm and aggression, its his autism or his tourettes or his delusions and psychosis. Or maybe its everything at once.
My son has never been to school, he's been at home with me, he's travelled the world visiting steam trains and having great holidays, any intervention he's had has been hand picked by us and we've either flown him to see someone or we've brought people to see him. We once had a team of 3 sensory integrationists from the Uk living with us for 3 months in order to try and work out just what was happening to him when he started to become so unwell at about 19. When they left we then followed them to the Uk and we stayed next to the clinic for another 4. It was only when we did that that we could see that what was presenting at sensory issues and causing great distress was in fact something way more than that.
My son can no longer travel, not even with me and 3 carers going with him and travelling in first or business class to reduce the strain on him. His last journey was very difficult and I know the co-pilot did few walk arounds before we took off in order to see how he was. Someone had complained about his Tourettes. Then when we got home my flight deck crew children said to me we love our brother but we are telling you he can no longer be taken on an aircraft, its not safe, and we are making the decision for you because we know you will always try another one more time for him. They then told me what would happen if he had a frontal lobe epileptic fit or a meltdown and the plane had to be diverted and it was far from pleasant. But to be honest It was a bloody great relief to be told he cant go even though to this day my heart breaks when he's asking when he's going to Llangollen to the steam train.
My son lives at home with me and his team of 2-1 round the clock carers in a custom built house that was built to suit his needs. Its also for extended family living and one day one of my children and their family will come to live with us him. I can only hope his health doesn't deteriorate anymore though to be honest the signs are not good.
He does get out and about, he goes to the gym 4 times a week for his personal crossfit training, they close the gym for him or else she couldn't cope, he goes to his siblings and takes pizza he's made for his nieces and nephews, he swims and walks about 5 kms per day. He swears like a trooper and no, its not his tourettes, he just likes to say fuck and he can sing whole songs made up entirely of fuck to things like Baabaa Black Sheep. He does the most complex of jigsaws in the blink of an eye and 1000 pieces is a small one. He's always out and about in the community, going to the shops etc, and he meets with nothing but kindness in life. In fact its Ramadan soon and my neighbours know how much he loves a Samboosa and every night there will be Samboosa delivered to the door for him. No he's not fasting, people just like to send a Samboosa for him. He loves to eat out and when we take him to one particular hotel for breakfast the staff no that when he says 3 croissant, 3 cheese, he means just that. They also know that if he also then says 4 hash brown, 4 turkey bacon, 4 chicken sausage, that thats what he wants - he is not getting confused with 4 on a day of 3.
Ive never looked for a cure for my son. I was around back in the day when all this chelation and stuff first surfaced and it scared me witless but if I had access to pre-natal testing and I was young enough to have more children I wouldn't thing twice about having the screening done. I wouldn't bring another child like my son to the world for all the money in the world because I wouldn't wish his life on anyone. Yes, Ive had carers in place for 3 years now but this is not about us its about my son and his life is awful even with everything we can out in place for him. He makes my heart singbut as I said before - I wouldn't wish this life on anyone.