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[donna1]

HI all,

 

Im a single parent, i have 2 children daughter 18, son 15 with complex behaviours ,severe autism, severe learning difficulties with ocd routines and rituals, causing high anxiety, Jay communicates using single words but unfortunately he has been hitting out at me which started around october 2012 previously my son has never hit me before whether its due to puberty and his ocd which has escalated quite severely. jays meds are risperidone 1ml twice daily and fluoxetine for ocd 20mls once daily, but the fluoxetine doesnt seem to be havin much of an effect as in decreasing ocd as it will always be apart of his autism but he is extreme with it. j is at his respite at the moment and has been accommodated their since end of january due to this. I visit him regularly as well as other family members as he is only 20 minutes away. He is very settled and happy there and the staff are lovely. He also responds well better to the males than females when moving him on from transitions. Sorry indepth post but any parent here going through this. I have a meeting in 2 weeks regarding supported living as he is at a respite unit which they kindly let him stay instead of going out of the area. Just feel like i want him home as he still seems so young to be away from home but the stress on myself and daughter i dont think it possible.

 

donna

[trekster]

hi and welcome

 

I went psychotic on risperidone depressed on antidepressants and hyper on tranx. wondering if the same is happening with your son? has he been tested for pandas? This can be common in ocd folk.

 

change of diet helped me the most omega 3s and other supplements. how does he communicate with you? Would he use an electronic device that says something eg an ipad?

[donna1]

Hi trekster,

 

Thankyou for your reply. No i havent had him tested for pandas but will have a look into it more on here, but had him tested for gluten & casein which was clear, he has been on risperidone for 4 1/2 yrs, fluoxetine since last december for ocd. He has always since young been ritualistic and rigid in his ways which myself, school and psychiatrist had put it down to his autism but it has gone more extreme, his diet at home was limited to the basic food and couldnt get him to try anything else but since being at respite he now eats anything and everything! very pleased about that. Jays communication is very limited he uses single or 2-3 words he can understand basic simple sentences and also pecs symbols but nothing more than that really an ipad he had no interest in.

[JeanneA]

Hi Donna, well reading about your son I could have easily been reading about mine! My son Glen is now 19 and went into a residential home in May 2011. We just couldn't manage his aggressive behaviour anymore. My son's behaviour became much worse when he started puberty (around 11-12) and kept deteriorating, he kept hitting himself and me with extreme force I was very concerned about his and my own safety, which is why I had to make the very difficult decision in placing Glen in residential care.

 

Glen was on fluoextine as well for quite some time and although it seemed to have worked initially as Glen appeared much brighter, happier, less aggressive in himself, the effect didn't last that long.

 

I think you have done the right thing by your son being in respite care and I would definitely go ahead with the supported living. It is the best thing for your son and for you and your family. I will P.M. you later on Donna.

[donna1]

Hi Jeanne,

 

Thank you for your reply. It is reassuring to hear from another parent who has or gone through similar experiences to myself and son. Has your son settled down in his residential home? Im just really anxious when his move goes ahead from respite as he has settled so well although the wonderful sttaff will take him for tea and overnight stays to begin with. Look forward to speak more.

[oxgirl]

Hi Donna, sorry to hear you're having a tough time with your son, it must be a very worrying and stressful prospect to have to start thinking about his future when, like you say, he is still so young. Just wanted to offer support really, as have nothing useful to suggest. Hope that you find a placement that you feel comfortable with for your lad and try not to blame yourself or feel guilty as none of this is your fault.

 

~ Mel ~

[donna1]

Hi Mel,

 

Thanks for your reply and support. It is a daunting prospect and im quite anxious at the moment of him having to move on and keep getting upset thinking about it. I know jay doesnt understand that he is hurting me when he starts lashing out hopefully when i go and have a look around placements which will be local i will feel better about it. I try to see it as he has to leave home a little younger than he would older and he will be 16 2nd july but we will still have lots of visits and taking him out which we do at the respite now and he thoroughly enjoys himself and we do, as he looks so happy and accepts us leaving, he loves going out on the mini bus which they do every day and visiting cafes. That makes my day!!

[JeanneA]

Hi Donna I've just sent you a P.M.

[oxgirl]

That's great that he's so settled and happy at respite and there's no reason why you shouldn't be able to find a residential placement where he can be equally content and well-cared for. You're bound to get upset, it's a big upheaval for you all, but it's great that you can still hold on to some positives. You're not losing him, you'll always be there for him and can continue to enjoy happy times together safely.

 

~ Mel ~

[donna1]

Thanks Mel, thats exactly what keeps me going, your right im not losing him at all (feels like at times!!) but every time i do visit hes happy. well cared for and staff said hes interacting with them so hopefully it works out well all round. Do you have a son or daughter on the spectrum?

 

Donna

[oxgirl]

Yep, my lad is 19. I'm lucky that I haven't had to face the situation you are at present, he is just about to leave college though and is very worried and stressed about what he might do next. He's only this year started to become a bit more independent and can now travel on the bus and train but social and communication skills are still very under-developed. The worst part for me is that he has never had a friend, I would give anything for him to have a friend. My biggest fear is that come July he will be at home on his own 24/7 with nowhere to go and nobody to see. Like you, though, I try to stay positive when I can.

 

~ Mel ~

[JeanneA]

Hi Mel, you are lucky to have your son still at home at 19, I do envy you, but it wasn't to be with Glen as you know. I was thinking you were saying from July your son will be at home all the time. Is it not possible for you to consider paying a carer who could come in go out with your son to places/activities he enjoys etc, just a thought. That way he would kind of have a 'friend' and he would be encouraged by this person to do things.

[oxgirl]

Thanks, Jeanne, something to think about. He's stuck in that middle section really; too able to access most help/support, but not able enough to go out and get things for himself.

 

~ Mel ~

[JeanneA]

Hi Mel I see what you mean, not easy for you then. Hopefully if you look into things perhaps there will be something that's suitable for your son's needs, I do hope so, thinking of you. :-)

[positive_about]

Hi Donna, I hope the supported living place works out - with autism you kind of have to throw away the rule book away and learn to find the best way through, there's nothing to feel bad about.

 

Mel, try not to worry about your son not having friends, or what he might do after college - all you can do is just support and encourage him to try working, socialising, etc. Its probably not easy to get help and support if he functions well, but see whats out there, such as local support/social groups. I'm 40 and not learn to make friends (apart from my partner), its difficult - but easier if you are able to work and socialise.

[JeanneA]

Hi Donna haven't heard from you in the last couple of days. How are things? Have you looked at any suitable placements as yet for your son?

[donna1]

Hi all,

 

Just recently had my laptop fixed, working well so far!! No placements have come up so far for jay, in the meantime jay will be able to stay at his respite until something suitable comes up. But with our visits taking jay out from the respite and him being so settled we are looking to do home visits with a family support worker for a few hours and then jay returning to his respite. I am waitng for our meeting on thursday as my main concern is the medication for his ocd as this is the main trigger for the hitting out aggressively.

 

Donna

[JeanneA]

Hi Donna hope the meeting goes well on Thursday, do let us know. :-)

[carl0s]

Yep, my lad is 19. I'm lucky that I haven't had to face the situation you are at present, he is just about to leave college though and is very worried and stressed about what he might do next. He's only this year started to become a bit more independent and can now travel on the bus and train but social and communication skills are still very under-developed. The worst part for me is that he has never had a friend, I would give anything for him to have a friend. My biggest fear is that come July he will be at home on his own 24/7 with nowhere to go and nobody to see. Like you, though, I try to stay positive when I can.

 

~ Mel ~

 

This my first post and at almost 59, I've lived with Aspergers without realising why I was different from my peers until a couple of years ago!

Although it hasn't been as disabling as it could have been in most respects, I really feel for your son.

I was packed off to Uni at 18years by my well meaning parents and it was not easy. The four years were an ordeal but at that age you can cope with most things.

Even now, I still don't socialise but have had friends, but my dogs have kept me 'sane' and unlike in the 1970s, there is the internet.

My advice is never to pressurise anyone with ASD into doing things which make them uncomfortable just because non suffers do them. I've always felt different from others but have accepted it, not tried to fight it nor to live up to other people's expectations. For example, I couldn't face my father's funeral 2 years ago so didn't go, it shocked my mother,(who should have understood the reaons) and no doubt raised eyebrows amongst the rest of the family, but harmed no one.

That's the point - avoid the stress and anxiety and you will be happier and be less 'difficult'. I realise that its easy for me to say, and the condition makes it not that simple for a lot of sufferers and their families.

A pet is for many, the answer to loneliness and I recommend one but am saddened when they come to the end of their short 12-14year life. (I soon find another, usually before the old one has gone)

Carl

[JeanneA]

Hi Carl, I just want to say 'a very big welcome to the forum', thank you for posting on here. I agree with what you are saying about never forcing anyone with ASD to do something they obviously don't want to do. I have a son who is 19 with ASD and he was forced to do things when he was at School that were not suited to him which resulted in him becoming very aggrssive. Eventually I kept my son at home and he didn't go back to School, just wish I had kept him at home sooner.

 

There are quite a few 'older member' on here, I'm sure you will get to know them. Look forward to hearing from you again.

[oxgirl]

Thanks for your input, Carl, and welcome.

 

Whereas I can see where you're coming from, I can't agree completely about not pushing people with AS into uncomfortable situations. My lad is very passive and would do nothing and make no progress if I didn't push him a bit into doing things that he wouldn't necessarily chose to do. Of course, it's about degrees and I wouldn't put him into situations that would be unbearably stressful for him, but I do feel that he needs me to persuade him to do things sometimes to realise that he actually CAN cope and CAN do them, whereas he would just sit in his room and do nothing if I let him. Everyone is different, though, of course and what people can and cannot cope with differs also, so senstivity is always needed for progress to be made.

 

~ Mel ~