Saturday 6 September 2014

My autistic son will probably never leave home

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There are things in a parents life that they take for granted.
Some of those is that their children will grow up, get educated, get a job, and move out!

But I have come to terms with the fact my son will probably never 'leave home'
At the moment he is 5 years old severely autistic, non verbal, and behind in most of his developments, He needs 24/7 support and care. He is Hyposensetive and demands large amounts of physical stimulation to get any form of satisfaction.
Spinning
Jumping, on beds, on trampolines, on me
Dancing (mostly by being held and bounced)
Tickling (hard enough to bruise any other child)
Eating (everything from ice cream to mud)
Making loud noises

He has no concept of personal safety, And this makes the outside world (also the safety of home) a very dangerous place. He will try to touch flames, swallow what looks interesting, climb up anything, run and chase something that catches his eye (cats, sweet wrappers people etc) when upset, he will fall to the floor and roll screaming (this has happened on a main road before)
He is very loving to me and his immediate family, He will hold our hands when out, and be led safely.
He feels safe with people he trusts and knows, but he can also take a shine to strangers he see's as safe! (this is a bit worrying)
He thrives on routine, and if that routine is broken then chaos will ensue, e;g If his school bus is 2 mins late, he will scream and shout and run up and down the lounge, banging himself into walls and windows to show he is distressed! (this has made our patio doors very wobbly and in need of replacing)

All of this and many more incidents have made me and my wife have the discussion 'what will we do if he never improves?'
This was a short and easy question to answer.
We both agree that, He's our son, we love him and we will always be there and do what is needed for him, The thought of putting him into care is something we both are against (even as he grows older and gets stronger) We will just adapt to his needs as they come. We have looked and researched as much about autism as we can, but living through it has been more educational than any book can be. And from what we've researched the only conclusion is that he will be better off living with us (forever)
I have long since thrown away the ideas of a relaxed retirement and am now planning for how best to serve my sons needs. I see articles from parents saying how hard it is to let their child go, but I could not see myself doing this (yes I know, things will get harder, but my stubborn mindset is fixed)
I have seen too many horror stories in the news about vulnerable people in care for me to feel even slightly convinced that they will be able to offer a better life for my son. I may be over protective, naive, and scared. But, that is how i feel and my determination to be the best parent to my children that they deserve only leads me to this conclusion!
I am and always will be a 'family is important' man. I will do anything to keep my family happy.
I have thought about and planned for the worse case scenario, and if that doesn't happen then I will be thrilled. The future of my son is not yet written and he could take massive leaps forward, but if he doesn't then I am ready! I will always be ready, for that's my mantra.




5 comments:

  1. This is my son and I love him beyond the stars and back, and I will be here for him every day, I have had had massive worries as all parents of autistic children do, like will he ever fall in love, will he ever have a friend, will I wipe his bum forever. To be honest the wiping a bum thing is less important to me than the friend thing and I know he has one at school, and whilst in our modern day society friends equal different things, like chats, and coffee breaks and bitching about stuff, Im thinking I kind of love Aidens version of friends, which means, we are friends, we don't go out, we see each other and I show how happy I am to see you, I hold up the wrong cards, as I only have a few to let me verbalise but when you are here I hold loads up as you mean that many cards to me.

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  2. My son is now 20 years old. He's still severely autistic, non-verbal, sensory-seeking, and yes-- at times he is aggressive. When he was very young, as your son is now, I had the same mindset as you. I can completely appreciate it. Now that he's a man, as much as it pains me as a mom to admit that he is indeed a full-fledged grown-up man, I have a different outlook. It's evolved, and is even now evolving. I don't know what the future holds for him, and for us, but I know that I still want the very best care for him. I love him, cherish him, and respect him. I want him to achieve goals, and to become as independent as possible. It's only within the last few years that I've allowed myself to open up to the possibility that this may mean that he doesn't live with his family forever. If I respect him, I need to be open to his desire to become an independent being. He toilets himself, he shaves, he uses the microwave, and he has also indicated that he likes pretty girls and has sexual urges. It's difficult to let your mind go there when your child is younger -- believe me, I know! -- but out of respect for my son, I'm keeping his options open. Good luck on your journey!

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  3. I love your post! I also blog at www.twobrothersonejourney.blogspot.com
    Everything you said in this post is what I say and worry about all the time for my own boys.

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  4. My son will also be with me forever. Age five was pretty hairy for us as well. It gets easier.

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