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Posted: Tue Jan 24, 2017 10:08 pm
Hi everyone. I am a full time carer to my son who was diagnosed high-functional autism when he was 12yrs and is registered severely sight impaired with a progressive eye disease he is my world. But he finds it so hard, has no friends, bit of a loner, communication skills are poor, vulnerable, a very trusting person and the world out there for him scares the hell out of me!!
People don't understand where I am coming from or how hard it is to see your child struggle..x
Posted: Tue Jan 24, 2017 10:43 pm
Lynnth, we all worry so much about our children, and their happiness, and especially over their social lives, and I know that must be exacerbated a hundred times when a child has any kind of special needs.
Does your son have an 'online' community? I know that for 'us' we can find it a bit strange (though having said that, of course, this forum is one too!), but if your son has access to a SAFE online community, perhaps one that is 'reserved' for those with autism or similar, he may find it easier than 'real world' interaction?
Teenage boys so, so often find 'real world' communication hard (I now my own did), and another way forward for him might be via what used to be called 'hobbies'. I appreciate the sight impairment is another whole layer of complication, but it may also yield another specialist community, eg, via organisations like the RNIB and so on?? Sadly, he will not be the only youngster with vision problems.
There are quite a few members her with children (of all ages, including adult) with autism or ASD, so hopefully they will be here very soon to make suggestions from their own experiences, which I hope may help you forward with your son. He sounds a smashing chap, and I hope he finds his form of happiness. It's great that he's high-functioning. My niece's step-son, now in the sixth form, is also high functioning autistic - his best subjects are, very typically so I understand in ASD - IT, maths and sciences, and that is what he wants to study when he gets to university. What are your son's main interests? What most relaxes him?
Wishing you both as well as can be - kindest regards, Jenny
Posted: Tue Jan 24, 2017 10:49 pm
Oh yes there are people on here who understand only too well and I'm sure more will be along over the next few days.
I have a 30 year old relative (not my main caree but loved all the same) who has ASD and other as yet undiagnosed issues. He wasn't diagnosed until an adult so missed out on vital early help and has been through a wide variety of support and accomodation situations.
Over time we have come to accept his need for friends and socialising is much less than 'neurotypicals' and that takes some of the guilt and sadness off, some not all
How old is your boy now and what support do you and he get?
Posted: Wed Jan 25, 2017 8:46 am
Thank you both for your replies. My son not a talker even via text only texts in an emergency so he wouldn't use an online community. I did contact the RNIB and there is no activities in my area on their system even action for blind have nothing in my county at all, all miles away!!. We do have local association for VI's and blind that are brilliant but can only do activities when they get the funding. Our local leisure centre did do goal ball but no longer can accommodate them and has moved to different part of the county on an evening and I do not drive. He never talks about his difficulties or disabilities to anyone or even tell people he flatly refuse's, but have been told he must to avoid himself being isolated, I cant think how else I can go about that. Thank you x my son loves same subjects IT, computing, maths and sciences, he could tell you all about space, planets, galaxy's the earth etc.. Been interested in all that since a very young age, but also loves mindcraft. He did what to do chemistry but Uni said depends on his sight and whether he would be able to participate with practical things etc.. as its a progressive eye disease which has no cure will lead to blindness or computing which in the future would be vital and hopefully have a career in (it is too my brother who is already blind ). Hobbies we go watch local football team, cant see much on the pitch has binoculars to use, I wouldn't say he has a main interest does what he wants to do at that time, he loves London which I have taken him a lot over the years. My son hard to please. Some ways he can be immature in others ie in a subject he is learning or knows its like how do you know all that lol!.
My sons primary school didn't pick up on it at all my son was bullied mentally and physically in primary school but school says he looks happy, but I kept telling the school my son doesn't see i.e. like others could see other kids where being cruel, nasty and taking the mick as my son still wanted to hang around with theses boys, my son sees the good in everyone. It wasn't until he got to senior school the then SENCO picked up on in after 2 mths got a EP in but I was fortunate as my sons eye consultant picked up on it too and got him referred for assessment at GOSH. My son will be 17yrs this year, even now he has been diagnosed nearly 5 years still hasn't been given the support only very slowly in progress of things getting put in place now. I have heard earlier support that's given a better quality of an adult life (not sure if that true). I would love him to have some good friends always encourage him to try new things, but he seems happy, but people don't understand that sometimes. He had a massive mental breakdown at school over year and a half ago I took him straight to GP who was brilliant and got him referred for counselling. I raised my concerns with the school way before his breakdown, reply from them its good to be stressed, I was wow!!..he doesn't understand how he feels, how he should handle and deal with those emotions.
Posted: Wed Jan 25, 2017 10:51 am
'Good to be stressed??????????????' I believe the Twitterworld response to that is 'WTF???????????????' But I'm too polite to say it here.
Alas, the cynical part of me thinks that the reason his school said that is because it simply CBA (another acronym I'm too polite to expand!) to do anything about it! Or because it's run by psycho bullies. Next they'll be trotting out the 'It'll make a man of him!' cr*p (oh dear, sorry, another expletive - but well deserved I think!)
Anyway, sorry to hear that there is limited opportunity via the VI/RNIB etc, but I'm wondering whether any 'outreach' by yourself could actually start something up maybe?
Another thought that occurred, especially as you say he's not very talkative - sorry if this is way out, or already considered and disposed of - but would he respond well to animals? I was thinking if maybe he could help at an animal rescue centre - and speaking of which, will he benefit from an assistance dog at all, both for his VI and for his 'emotional socialisation' so to speak (do hope he's not allergic to dogs - alas, my son is, and I know it's all too common)
I'm glad to hear he's enthusiastic about IT and so on. From what I understand a HIGH proportion of IT professionals are on the spectrum and they do seem to thrive in that very 'abstract' world. (There was an item on the radio recently, you probably heard it yourself, saying there was now a company that specialises in taking on IT professionals with autism/ASD and deploying them to customers precisely because they have such specialist skills, eg, in pattern recognition, easily able to perform intense tasks that neurotypicals find difficult or impossible - the message was that it really is a question of 'differently abled' when it comes to ASD, and that they are a massively valuable resource that the IT economy should be snapping up!)
As for his eye disease, this is heartbreaking - how absolutely tragic. May I, again, please forgive me if this just comes across as ignorance and crassness, hope that with all the new breakthroughs coming on stream in stem cell therapies, that 'one day' the disease may be halted or even reversed. That said, it must, in a way, be a 'reassurance' to you that your own brother has already gone through this, and therefore he will be able to best support both you and your son in the coming years in that respect.
I do wish you all the very, very best possible with your son, and certainly hope that he is able to have a satisfying and productive university career when the time comes.
With kindest wishes, Jenny
Posted: Wed Jan 25, 2017 2:00 pm
It's a shame that the blind charities don't seem to have close by support. Have you contacted the NAS, the National Autistic Society? They have very good support both for parents and carers and for those on the spectrum too.
In my experience the best a parent can do is be assertive and push, push, push for services and help starting with the SENCO at school who should put you in touch with other agencies such as social services. The meek and those who don't ask get nowt. It also gets harder when they become adults so get what you can asap.
Posted: Wed Jan 25, 2017 6:59 pm
The NAS Has a special section for transitioning from school to adult
http://www.autism.org.uk/services/helpl ... pport.aspx
Posted: Mon Jun 26, 2017 10:31 am
Lynth, how old is your son now, please?
There is a special College in Frome called Farliegh for young people with high Aspergers, have a look at their website, my daughter went there.
On the question of his sight, why don't you volunteer to help the Guide dogs locally in your area, then your son could meet the guide dogs and Their owners, maybe he would form a strong bond with a dog, because the dogs are very sensitive and have empathy