Asperger's Grandson!

HildajenniJ

I saw a couple of very interesting programmes recently, on BBC 1 (might still be on iPlayer) where groups of people with various abilities and disabilities, were helped into work after years of unsuccessful applications.
I have the utmost sympathy with your family predicament but that isn't heloful so what I strongly suggest is, like others on here have said, that your DD sees her GP at the EARLIEST opportunity. As your GS gets older and stronger, whi knows what damage he might do to himself and others. He is already stretching your DD's patience to the limit and it's affecting other family members too. Intervention NOW will certainly save a whole lot of heartache later. She MUST do this now for everyone's safety and sanity, not least that of her son. I send my best wishes and hope to read here, of positive steps being taken on his and her behalf.
Please tell her to be completely open to her GP about his behaviour and the effects on the wider family. She must insist on help asap. Take care.

sorry meant wonderful!!

please use your GP. Our DGS has a chromozone problem. We asked if he could be refered to paedotrician who confirmed he has fragilex syndrome. Once the diagnosis was confirme doors opened! He went to the wonderful special needs school in bocking (braintree) and progressed into the most wonerful young man he is now. He is 29yrs. old and works part time in a garden centre.I do feel for you, it's so upsetting but with the right help I'm sure things will get better. xxx

What's wrong with having her parenting skills questioned? Someone might come up with a good idea she could try. I had (still have, really, except he's grown up and moved away now) a problem son and I went all over the place looking for help for him - he had weekly sessions at the Child Guidance clinic for a while, until it became apparent he wouldn't cooperate with the therapist, and if anyone had offered me some training that might have helped me deal with him better I would have jumped at it. I even used to ask, but no one had anything to offer me. At one point I even called the NSPCC advice line to see if they thought I was doing anything wrong. If they give her parenting advice it's not a smear on her character, it's just an attempt to help.

Oh dear, this is so difficult, isn't it? I used to be the manager of a residential home, for young adults and one young man had the same two symptoms. It's the unpredictability which throws the spanner in the works. There are residential homes for children with autism, where the trained staff are used to handling the needs of their residents. Residential care for young adults is nothing like for the older generations, as these young adults go to college and have regular outings, so it's a good life and the only drawback is the parent's / parents' feelings of guilt. But the quality of life is good and finding such a place for the young child will make sure that the other children lead 'normal' lives. The worst of all situations would be to look back on the effects that siblings living with one who has autism and tourette's has on their 'could have been better' lives.

Head for social services. Speak to the GP. No-one should question the mother's parenting skills. She should be praised for getting her act together and viewing the whole picture.

I’ve just read your post and gosh I thought I had worries but my heart really goes out to you. I cannot offer clinical advice, I don’t know enough, but just to say you and your family are in my thoughts this Christmas and hope help for you comes soon .

Have you tried www.carersuk.org they are really good and have a helpline and forum to talk to other carers. I am a carer for my 75 year old brother with learning difficulties and they have really helped me cope.

Is there some reason your daughter will feel judged by the GP about her parenting? If there isn't, she needs to find a GP she can trust because it really is the starting point for a lot of the help out there.
It sounds like your daughter has too much on her plate and she should seek help from her GP for her own sanity but maybe there is an Autism help/information charity out there who could give her some advice to help her put a strategy together.
Are you able to take the other kids to home schooling events/meetings to give your daughter some quality time with GS1 which may help her to regroup? One of the problems of being a virtual single parent who home schools is that there is very little down time so things can easily become overwhelming even without the added problems of disabilities so giving her space to relax a little may make things feel better.

I know that there are horror stories about Social Services but they are the exception and I think you should try to encourage her to engage with them. It is affected the other children too and they need the additional help that she could get. There is often more help available than you might think.
My sister is a social worker and she has a lot of respect for what the parents of children with these kind of difficulties have to go through and they try to work with the parents. There are failings in every system but it is not designed to make your daughter's life more difficult. Quite the opposite. It may be understandable that she is reluctant to involve them but that does not make it the best decision.
Look online at what is available in your area and look at the local authorities own website.
If she won't accept professional help, there is only so much that people can suggest.

Hildaj have I read it right she has four children three boys and a girl and two are diagnosised with autism with the 9 year old having additional problems and a husband that is away for long periods of time with his work and she is obviously with the children 24\7 it is more than anyone could manage Surely school for them all would be the better option there must be more than one school in the area, at least it would give her some breathing space and if she felt they were not learning fast enough she could supplement their learning with teaching through their homework Surely she can’t teach and control two autistic children one of who has complex needs and have a happy normal family life Could his problems be made worse by being around all his siblings day and night without any individual attention
I am sure your daughter is a fantastic mum and teacher and this is really not meant to be a critism but this sounds so impossible for everyone with burn out on the horizon

I would urge you to keep the other children in main stream school and seek support for them there. It is very disrupting for the siblings of disabled children and they need all the normality they can get, they have their own lives to live.

My heart goes out to your daughter and to the children too - it sounds like unmitigated hell for them all. The siblings must be so deeply affected by this little boy's behaviour; for their sake alone some outside help needs to be found, and people on here who clearly have helpful expert knowledge are pointing your daughter to her GP to begin with. She surely cannot go on much longer like this as someone - probably her - is going to have a breakdown. If she has reached the point of saying that she cannot go on like this, can you point her in the direction of her GP?

hildajenniJ - you are right to recommend the GP. He needs treatment of a kind your DD cannot provide and soon she will go under leaving the rest of the family totally vulnerable. You need to convince her what the worse case scenario could be and then she will accept the need to involve specialists, which she is not. I have a friend whose grandson has tourettes. We were on holiday in the same place once and I observed at first hand how abusive he was to his mother and younger sister. The verbal abuse escalated to pushing and shoving and he was a strapping 14 year old with the capacity to do much physical harm to anyone, let along a 10 year old sister. Under the pressure of the observations made by my friend and others of us around, my friend's DD asked the GP for more help (he was already on medication but had refused to take it), and the boy was institutionalised for a period of about three months while he was properly assessed. A GP can't do that because s/he only gets a snapshot of the behaviour. This was the best thing she could have done because it brought some stability into the home, it improved her relationship with the daughter who was beginning to resent her mum for allowing her to be continually and unpredictably bullied by her older brother, and it allowed the boy to be given a tailored medication regime. He is now in his early 20s and has finished a college course and is holding down a job. So, please encourage your DD to believe that there are solutions if only she can take the step to better the whole situation.

I really understand this Hilda. My brother had Tourette’s and our childhood was hell, with a very strict father who had no patience with my brother’s behaviour. The problem was Touretts was not recognised all those years ago so his behaviour was seen as pure naughtiness (that’s a polite phrase ‘cause his outbursts were vile). Has your grandson been referred to a neurologist and is he receiving treatment? The reason I ask is my brother wasn’t diagnosed until well into his 40’s by a new GP who had recently undertaken research into Tourettes. Once he was referred and started medication the change in him was remarkable. He still had the occasional outburst but this was much easier to handle once we all knew that he had a medical problem. I do hope this helps somehow.

Only read the first page but I agree with all those who say she needs help. Do pick Galen's brains, she knows so much that will help you all.

I really understand your DD's wish to be independent, she has to be if her DH is away and it may be the only way she can cope, to feel that everything will go to pieces if she lets go of anything. I think all you can do is show her your support and let her sound off to you as and when she feels up to it. Perhaps show her this thread and let her see it from outsiders viewpoint. That just might help.

Big hugs

Do go to your gp ask for an appointment with CAMHS. We did this for our gd. She has mental health issues and they were brilliant the thing is social services won’t interfere if you are taking your son to CAMHS they didn’t with us they said we had done the right thing.

Obviously, dd can't do this by herself. She now needs to be a "strong" enough woman to admit they need professional help and then go get it.

But only she can decide that though. I feel for you having to watch this and not really be able to step in and help.

hildajenniJ have you or your DD thought of the National Autistic Society? Their website is www.autism.org.uk..
They have a Helpline; 0808 800 4104. Hours 10 to 4 pm.

Funny but my nephew has Asperger and it was never treated as a Mental Health Issue he is now a fully independent adult about to get married and in full time work.
There is plenty of help available it is just knowing where to sign post this family.
All this negativity is not helpful.
This child has two recognised clinical conditions which can be treated.

Your Grandson must have been assessed for Aspergers through the GP so the GP already knows about the situation and will only want your daughter to get the support she so obviously needs.
If she doesn't allow Social Services to get involved she will wear herself ragged to the point where she will be no help to anybody

Sorry but she needs professional help.
Why does everyone view social services as a judgement.
They are best placed to get the help she needs.
She is firstly a Carer and is entitled to a carers asssement.
Her other children can also get help because of this,
So the professional route is the only way to go.

Thank you all for your help. My DD is in the process of applying for DLA. DD does very well home educating the children. When she was "inspected" last summer she had a glowing report. The inspector even asked her if she'd ever thought of teaching as a career because she scored so highly. She has the support of the local Home Ed group and the DGC have made some good friends.

What personal experience do you have NellieMoser to hand out such negative ‘advice’?
My DGC has had a lotof help from Social Services and from CAHMS and still does.
You may need to be firm in your stating that you need help but it is there.

Good post, Eazybee.
As a teacher who worked with children with similar needs to the GS mentioned, I agree that the poster's daughter should speak to her GP ASAP, so that the child can be referred to CAHMS and access the necessary support.
It appears to me that the mother would also benefit from professional support.
How on earth can she manage to educate her other children when trying to support her son? It must surely also be badly affecting both her own and the siblings' emotional wellbeing.
What a sad situation for all concerned. I hope things improve soon.

If I understand your posts correctly your daughter your daughter is trying to educate four (?) children under nine at home, on her own, without support from Education, Welfare or Health. Not surprisingly, she is finding it difficult to cope. The best thing you can, must, do is to persuade her to seek professional help.
The younger children would benefit from the stability full-time school can offer, and the GP can set assessment of the oldest boy's condition and needs in motion. It sounds as though your daughter is wary of professional bodies, but for the sake of the children and her own welfare, she does need to seek their advice. If the boy is to have a place at a special school, he will have to be assessed.