My poor daughter

My DD has three sons with autism. The eldest is eight and was diagnosed with Asperger syndrome, he also has Tourettes and is prone to violent outbursts. He kicks, spits, shouts and screams and slams doors. They live in a first floor flat, and have been reported to Social Services, and the police by the downstairs neighbours. My DD has very little support as her DH works at sea for 8-9 months of the year. She has joined several Autism and Tourettes forums and talks with other parents in a similar situation. She has also got my granddaughter who is ten a place with a befriending service for neurotypical siblings of family with ASD's. She goes out one day per week with her mentor and does things she couldn't do with her younger brothers.
She phones me on a regular basis when she needs a sympathetic ear. I do my best to help but will not take any of the boys out with me now as they are prone to bolt if things are too much for them, even going to the shop next door is a nightmare.
I feel for your daughter. I hope she finds the strength to look after her son. My DD tells me that the worst time for them is when they hit puberty! We will cross that bridge when we come to it.

Here's the blogger - any mother or gran would enjoy reading her posts

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Meant to add, must be loads more

Hi Musicelf, how I feel for you all, esp your DD.

I'd expect she's already on Facebook? As a parent of a son with sn for 18 years I was late into FB and a group within for families affected by the particular sn. It was brilliant as members from around the world and children of all ages. A place to let go and learn too while still sharing normal stuff - the difference being sharing bad stuff normal and everyone 'getting it's, no embarrassing silences ...

I'm on Twitter and follow a great blog by a mother of an autistic son and another typical child. When I find name I'll send it. She was a teacher now a sahm.

So difficult, wish I had a magic solution. Love keeps you going!

I don't have any words of wisdom to add ... The lovely grans above seem to have come up with some advice for you, but I just want to say I feel for you and your family. Wishing you all courage ....

I completely understand, as I have an autistic son - although he is very introspective and not prone to outbursts.

Sometimes these difficulties get to us, and I have sought help from social services - who have been marvelous. They have arranged youth club for special needs children which is run by competent people two evenings a week and they pay for two days a week during school holidays. Perhaps make an enquiry.

We have also been lucky enough to have some respite care for a few hours a week and I wonder if this is available in your DD's area?

It is so difficult, but try and get as much support as possible from social services - get him known to them from an early age as they will need help through adulthood when parents are no longer around.

I sincerely hope she will be able to get the help she needs - never give up asking though even if the answer is no. xx

Most people really don't understand how little help there is for people having to cope with such situations. There needs to be an emergency CPD support system that people can call when they cannot cope any more.
My neighbour had a very extreme episode last night and I could hear someone who I think was her father trying to deal with it. Lots of screaming, banging, door slamming (which is a big thing of hers) and what sounds like furniture being thrown around. We are going to go to the Council about it as soon as her next door neighbours get back from their break but it won't help if it is just treated as a bad neighbour problem because she doesn't want to be a bad neighbour and getting her to sign a good behaviour contract will be a waste of time.
At one time she was shouting 'get out' repeatedly and then 'get off me' and I did wonder if I should go down but I am pretty sure it was her father.
She once had an episode and was shouting at some friends. It was obvious that they had taken her car keys off her. She shouted that they can't do that (which of course legally they can't) and that she would call the police. Her episodes are very frequent and although I get irritated when people say that people with mental illness shouldn't drive, in her case, it is worrying that she can.
If we called the police every time she screamed or sounded desperate they would be here every day sometimes several times.
Because of this, I have studied the various things that can be done and there really is nothing. That is reasonable for neighbours as people can be vindictive or ignorant but there is nothing for parents either.
Support organisations are vital for people like your daughter and I hope she can find one locally. If not at least one online that she likes. If she can get any respite care, that would at least help her cope but sometimes the only answer is residential care and people should not feel guilty if they have to do that.
I wish you and your daughter the best.

The National Autistic Society ought to be able to offer suggestions - I see the link has already been supplied. Another possibility is "Carers 4 Carers" cftc.org.uk/ as anyone who is an unpaid carer needs support.

Be careful of "alternative" therapies. The people who force autistic children to drink industrial bleach are still active.

How about your daughter looking at complementary therapies. Something like homeopathy or craniosacral therapy could help her son and would also be a support for your daughter. I know this isn't on the NHS but it may be money well spent.

Hello Musicelf. Maggiejane1 mentions a visual schedule and I know from experience that this is a fantastic suggestion as I worked for many years in an autism unit. If you need any help with using visuals at home please pm me and I will be happy to help.

You say the 4-year old knows which buttons to press to wind his brother up.
Would it be possible for you to have a chat with the 4-year old and angle things in a way he'd understand? Maybe praising him for helping his brother or straight out asking him not to do annoying things. Whatever you think he might respond to.

The siblings' reactions are understandable, tho, and it's a difficult situation for everyone.

I hope your visit goes well and you get a bit of rest yourself.

damewithaname - I send hugs to you. I am so sorry you feel the same as my DD. If it were down to me I'd move down to be with her in a shot, but her (loving) step-father and I also have another grandchild with a serious heart complaint, and I have a very elderly mother who needs looking after. I am going down for a week and will try to make sure my DD has some rest.

The school is aware of my DGS's condition, although he generally copes well at school, and is high-functioning. It's at home where it all lets itself out, which is normal, I know. My DD always plans things meticulously so that she can prepare DGS fully, but sometimes it's hard to get inside his head to understand what he's feeling.

Great support network, this Gransnet. xx

I'm so sorry your daughter is going through such a hard time, I have an autistic grandson too and know how difficult meltdowns are.
Has she tried ringing the autistic society helpline for advice of where to go for support? The number is 0808 800 4104. Does she belong to a local support group? If not try to find one for her. My DD is a volunteer support worker for an autism charity. I will ask her for any other ideas when she is home from work.

I don't know where your daughter lives but there are lots of Autism support groups around the UK - if she hasn't joined one then I would try to persuade her to, they offer support and can often help with alternative techniques to help calm a child. There is even a support group that matches specially trained dogs to children who often respond very positively when all else has failed. supportdogs.org.uk/our-work/autism-assistance-dogs/ or www.assistancedogs.org.uk/ Autism Support UK has many different sections (including a parent to parent helpline) that might help support your daughter and her older child (who possibly could learn to help her younger brother) www.autism.org.uk/

My friend when though the same and it willget worst the bigger they get.
Can your daughter contact social services and began for help.

Thank you to all of you for your responses. Sometimes it's just good to get things off your chest.

To those who suggested I go and stay there, I'm already due to go down for a few days next week (she lives 6 hours away) where at least there will be a chance for a lot of hugs and help. My DD and SiL made the decision to move to Cornwall some years ago, before things got so bad, which makes things a little more difficult, especially as I'm not in the best of health.

I've made a list of lots of support centres and advice networks, and I will talk to her about various options that she might not have thought about.

Again, thank you for listening!

Reading this right now has just made me tear up. I know how she is feeling. I'm in that position myself. I too feel like running away because I have no idea on what else to do. Mom, is there any way that you can down tools and head over to her? I know that you live far away (as does my mum) but she needs your help! Please try and get to her and give her a day to take a day to recover. It's very difficult. Much love x

Can she pinpoint what causes the melt downs? Often it can be a change of activity, something being in the wrong place or something unexpected coming up. Does your D use a visual schedule with your GS so that he knows what is going to happen during his day? When he is feeling calm could she 'playact' difficult situations and give him coping strategies? Can she ask the school how they cope in these situations, they might have their own strategies that work and it would be good to keep everything the same when he is at home.

Is your grandson in school? His teacher may be really helpful and will know him and his reactions well. Worth your daughter checking if they can help, providing support or pointing her in the right direction. Big hug to you all.

How very difficult for you both. Does the child's school offer any support - I expect the thought of the summer holidays on the horizon seems daunting too? Perhaps the SENCO (rather than the class teacher) at the school can search some local resources and at least get to know the level of concern at home. If they also agree that his autism has become more of an issue at school they may be able to access more specialist help within the education authority, even transfer to a specialist unit, but a conversation would enable her to find out the options. Are you able to drop everything and just go - even just overnight initially? It does sound like a plea especially if she rarely responds this way. All good wishes.

There are a number of blogs and threads on Twitter by parents in a similar situation. You might be able to identify some help/support for your daughter by having a look round these yourself to see if there is something to pass on to her. Best wishes.

Maybe your DD could access help through Childline or the NSPCC. These services aren't just for struggling children, they are also for parents who need extra help. It could be they could help you access services for respite purposes.

As a Carer your daughter has an entitlement to an assessment in her own right. The grandchild should be reassessed for further support. Your daughter should seek help from a Carers Centre.

Does she belong to a support group, or have access to other parents in a similar situation? How difficult for you all - I'm so sorry and I hope she does get some help, but how good that she has you and can 'unload'.

Does she get any ongoing support from the local authority? There tends to be a high threshold for support these days due to numbers and cuts but it would be worth her talking to other parents locally. If she isn't already in touch with local parents in the same situation that would be a positive first place to start.