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Asperger's Grandson!

(105 Posts)
hildajenniJ Sun 17-Dec-17 13:02:32

I've just had DD on phone saying she can't do this any more. GS1 age 9 as most of you know has Asperger syndrome with Tourettes. His vile behaviour has escalated in the past few weeks. He's always had meltdowns associated with his condition, but it's getting to the stage where he is now saying the most hurtful, horrid things to his mother, being destructive with the nearest thing to hand, often his siblings belongings. He's upsetting the whole family. DSiL works at sea so is away at present, and won't be home until February. They only live 5 minutes down the road, but there isn't much DH and I can do to help except take either him or his brothers and sister for a few hours until everything subsides again.
DD is at her wits end with him. She took the whole family out of school as they were failing drastically, and the school didn't have the resources to help them. GS1 doesn't want to do school work, all he wants to do, in DD's words is "pratt about". The latest meltdown was about doing a science project, the subject chosen by him!! He tried to tear his sister's book, and then destroyed his brother's Lego model.
Understandably, she doesn't want to involve Social Services which means going through the GP, and having her parenting skills questioned.
I suggested to her that this seems to be the only way to deal with him. I suggested special school, but she doesn't know how to go about having him assessed without going through the GP etc.
Any thoughts would be appreciated as we are at a loss, and these outbursts are a daily occurrence.
Thank you all for taking the time to read this, honestly I could sit and weep, but that would help nobody.

Baggs Sun 17-Dec-17 13:06:37

I don't think she need worry about the GP. GPs must know how difficult children with such problems can be. Surely the GP would refer the child to CAMHS and then back off while the CAMHS people did their assessment?

Auntieflo Sun 17-Dec-17 13:11:34

Hildajj, I honestly don't know what to say to you , but hope that someone on here can give you the direction that you and you family need. Please come and ask for help, or just unload. Writing it down gets it off your chest, for a while. Apologies for my feeble response, but lots of GN's read and can will have helpful ideas for you and your DD to follow. {{{hugs}}}}

Galen Sun 17-Dec-17 13:12:07

I agree strongly with you Baggs
I see a lot of these cases. There are medications that can help in some cases as can the coping mechanisms taught by people like CAMHS.
Also is she aware she may be eligible to apply for DLA and if successful Carers Allowance?

hildajenniJ Sun 17-Dec-17 13:36:40

She's just got the DLA forms to fill in Galen. I really think it's time for professional intervention, but DD is or was a strong woman and wanted to try and do it by herself!

grannyqueenie Sun 17-Dec-17 13:48:18

I feel for you hilda, it’s heartbreaking to watch our children struggle with their youngsters, often having to cope with stuff we’ve never had to manage ourselves. Your dd is lucky to have you nearby, you probably help more than you realise. I hope that the family get all the support they need to find a way though it all.

kittylester Sun 17-Dec-17 13:57:56

I feel so sad for you Hilda and of course for your DD and her children.

As she has the DLA forms already please ask her to get help filling them in. CAB can help with it. It is much easier to use the correct 'buzz' words first time round that have to appeal.

Are Social Services involved. They can help. As can the GP.

Please have a hug and brew - as GQ says you will be more support than you know.

Galen Sun 17-Dec-17 14:06:57

She’ll need a formal diagnosis to get DLA and I agree with getting qualified advice for the forms! ( Also, please make them legible!)

hildajenniJ Sun 17-Dec-17 14:19:32

A friend who has been through the form filling process is going to help fill in the forms. GS has a diagnosis, he was assessed age 5. DGS2 had an Autism diagnosis last summer age 6. I'm really going to try to make DD see that she needs more help. My DH is undiagnosed, but we are sure he has Asperger syndrome. He says he was destructive as a child, and was about 12 when he realised that his behaviour was "wrong".

kittylester Sun 17-Dec-17 15:46:30

It might still be worth checking on the wait time for CAB. They were a huge help with DS's DLA and, because they filled it in, they were much more able to help with the appeal when they turned him down!!

Jane10 Sun 17-Dec-17 15:51:23

Have PM'd you. DLA is on the way out btw. To be replaced by PIP. Unfortunately, a lot of our AS people who had been in receipt of DLA were not found to be candidates for PIP. There may be trouble ahead... sadand angry

Galen Sun 17-Dec-17 15:57:37

Under 16 it’s still DLA
It’s when they reach the magic age of changing to PIP the trouble starts. Apparently they’re miraculously cured.
The real trouble is that I suspect the HCPs do not have enough training in mental problems.
It’s important that a claimant is accompanied by a responsible adult to the examination and “tells it as it is”
Reports from professionals should be included.
PIP does not deal as well with mental problems as DLA did.

Galen Sun 17-Dec-17 15:58:59

Trust me! I do know what I’m talking about.

Jane10 Sun 17-Dec-17 16:22:01

I'm sure you do. I only work with adults and people forget that there are 5 times as many adults with ASD than there are children!
Parents often say that they can't believe how hard it is when their children leave school. So much effort and energy goes into children's services and remarkably little into adults. PIP, even with our staff accompanying applicants to interviews is very often refused. Professionals' letters are ignored! Very frustrating.

Luckygirl Sun 17-Dec-17 16:31:13

I am surprised that there has not already been a referral to CAMHS - via the school.

Professional help is what is needed - but not always easy to get - we have a family member who has been in a similar situation and the right help was only forthcoming by shouting very loudly, then shouting again - and making a thorough pest of oneself over a very long period of time. It should not be like that, but sadly it is.

hildajenniJ Sun 17-Dec-17 16:31:29

It's really frustrating isn't it. ASD's are for life, you don't grow out of them! My DH has found ways to cope and is a great husband and father. If he feels himself getting sensory overload, he goes off to the shed or his room to calm himself down. He had learnt how to cope by his teenage years. I met him when he was 18, and he was quite normal by then!grin

tessagee Sun 17-Dec-17 17:03:59

Hi HildaJenniJ, My DD's friend had similar problem with her Aspergers' boy. Eventually the local primary school asked her to remove him. In due course he moved to a special school where he has come on by leaps and bounds and is much much happier. Hope this helps.

Cold Sun 17-Dec-17 17:14:31

My eldest DD has ASD and ADHD and I well remember this time of year as being hell. I think that many children with ASD pick up on the pre-Christmas stress and excitement and become completely unable to cope.

Are there any activities that he finds calming? DD used to like Dr. Who story tapes or DVDs so an hour destressing was often time well spent. She also slept better with her weighted ball blanket.

I think your DD needs to get longer term help through her GP and CAMHS

lemongrove Sun 17-Dec-17 17:19:52

Yes Hilda we have had all that for years and years.
The only thing to do is to have the boy assessed, have his name put down for an autism school and involve both Social Services and CAHMS.
If he could see a clinical psychologist he could be prescribed some appropriate medication as well.
With all the above help, DGC is still difficult but without it,
Our DD would have had a break down ( and we would not be coping well either.)

hildajenniJ Sun 17-Dec-17 17:51:26

DD home educates all my DGC. Would it be possible to get a place in a special school without being in mainstream education? How would we go about it. There is a good school in our neighbouring town.

Fennel Sun 17-Dec-17 19:00:44

You could, ask your GP, as above, or write to the Northumberland Education authority, and ask how to start the assessment of your grandson.
Or, if you're brave, go to the school yourself and ask for an interview with the HT. Is it Hexham Priory School?
When I was working as an EP we often had referrals from family members such as yourself, but I couldn't find an address for your nearest Schools Psychological Service. Maybe things have changed since then.
Hoping you can help your family.

harrigran Sun 17-Dec-17 19:54:12

I don't wish to offend but wouldn't it be kinder to the other children to keep them in mainstream education and allow them respite from their brother.
I can only echo others and say try for a place at a special school, the boy clearly needs trained professionals.

hildajenniJ Sun 17-Dec-17 20:01:06

Yes Fennel you are right. I've heard really good things about the Priory School. After the holidays, I think I might just give them a ring and have a talk with them. Since they are home educated, I thought that you may have to go through a school Ididn't know that you could just go and ask.😃 I'll have to talk this all over with my DD. You have given me a light at the end of the tunnel.

Crafting Sun 17-Dec-17 20:11:31

Don't give up hope. Our DGC was as you describe. Get assessment and fight for every bit of help you can. finding out that he is on the autistic spectrum may help your DGS to understand that there are many children like him and he is not alone in his stresss. Please, please get him the help he and your DD need. My DGC went through the same thing. Off school for years. Now back in mainstream with help and is learning how to control these outbursts and to understand why these things happen. Has your DD contacted the National Autistic Society for advice. Read a book called The Reason I Jump (sorry can't remember who it's by) to help you and DD understand some of what your DGS might be going through. DO not give up hope.

trisher Sun 17-Dec-17 20:49:57

hildajenniJ what an awful situation for you and your family. I think your DD needs to ask for help. It is hard enough home educating children but when their father is absent for long periods it must be even worse, add a child who is difficult and you have an impossible task. If you live in Northumberland there is a system where she can self-refer www.northumberland.gov.uk/Children/Needs/SEND.aspx#northumberlandsendinformationadvicesupportservice
She shouldn't fear Social Services I'm sure she is doing her best in difficult circumstances and they will recognise this.
Good Luck!