Autism support

New to Carers Connect
1

I am grandmother to two young children, a little girl of 6, and a boy of 10. Our boy is on the autistic spectrum. Their Mummy, our youngest daughter, passed away from leukaemia four years ago. Alternate weekends my husband and I provide respite care for one or the other of the children, which gives their Daddy a bit of a rest. We also support my learning disabled son who is in semi sheltered accommodation.

Recently, our grandson has become increasingly anxious, having frequent meltdowns, nd struggling to sleep. He has tracked his Daddy, punching, kicking and biting. He’s a big lad for his age. This weekend, for the first time, I got punched too. His little sister gets very frightened and screams when he is in this state. The doctor wants to wait to see if he settles once the school term is under way. I believe the family is in crisis. How do I get help?

2

Hello Anne and welcome to the forum.
Sorry to hear you’re having trouble with your grandson. Find out who he has been seeing during the school holidays because it sounds like he’s learnt that anti social behaviour from someone else. Has another child been bullying him?

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Are Social Services or Education helping at a all?
Does he go to a mainstream or special school?
Would it be better for you to go to his house, rather than come to yours?

4

The children come to my house ( individually) to give them a break from the situation at home. It seems to help. I take them back on a Sunday night and sleep over until Monday morning.
As an update, our little lad had a complete breakdown at school yesterday, which carried over throughout the evening. He finally fell asleep exhausted at 10.50 pm. The SENDCO has been very supportive throughout his school career to date, but there is only so much can be done in a mainstream school. The educational psychologist sees him once a year. Yhe SENDCO is now arranging for a weekly counselling session. In the meantime, he is to wired to attend school today, and for the next couple of weeks will be attending mornings only, to ease him back into the pattern of school life. He will have help catching up. Thereafter, they are arranging 'structured play, so that the children who enjoy setting him off cannot trigger another episode. My heart weeps for our boy.

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There is an organisation called IPSEA. I suggest that you talk to them about the problems your son is having at school.
It may be better for your grandson to attend a special school, rather than a mainstream school.
They were wonderful when my son needed a special school and the council were being stubborn.
I know it’s a difficult issue, I nearly had a breakdown.
Put simply, is it better for him to be in mainstream, little fish, big pool.
Or is it better to be a bigger fish in a little pool.
For my son, the special school was wonderful, the making of him.

6

We are trying to get him into a special school when he transitions to secondary school next September, but there are no guarantees- the local ones are heavily oversubscribed. Will look into IPSEA. Thanks.

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Contact IPSEA as soon as possible, these things take forever!
Have you looked at schools outside the state system?
My son was brain damaged, is now part 3 years old, part 42 year old. #
He went to the Sheiling School in Ringwood, Hampshire, which is a “Camphill” school.
They are dotted around the country, take day and boarding pupils.
The council may not tell you about them, as they are not in the state system, they approach education a bit differently. Staff are very calm and classes are very small.

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It is up to his Daddy regarding school placement, not me. It took quite a bit of convincing for him to agree to look at special schooling for secondary level when our boy transitions next September. However, since they had a visit arranged by his current SENDCO, both Daddy and our boy are more enthusiastic. The little lad told me “Granny, it was awesome!” and you don’t hear kids say that about school very often. Getting through to next September is the worrisome part. He wanted to kill himself Sunday and Monday night, poor little guy. I have told his Daddy that is more than just a meltdown, but he has yet to take action. I am very worried about all of them.

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As a parent, it’s very difficult to see the gap between a special needs child and a child without special needs.
Of course your son in law is the one to make the ultimate decision, and of course the council make the future seem rosy, but is it? Having lost my own husband, I know how stressful it is losing a spouse. He needs all the help he can get.
How many options were given?
Your grandson is clearly already utterly stressed out. How on earth will he cope with a whole school year?

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Hi, bowlingbun. That’s exactly what has me worried. I don’t want my grandsonbto wind up in care, but I can see it happening if things don’t change. Either that, or he will harm himself, or his little sister could get hurt if she gets in the way. The whole thing terrifies me.

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Trying to find the most suitable school for my son M was undoubtedly one of the most difficult times with him.
Deciding your child needs a special school is really difficult, finding the right school even more difficult.
It might be easier for your grandson to be a weekly boarder at a school, to give the rest of the family a break.
We found that having a break meant that we really looked forward to M coming home for the weekend.

On the forum we often say that NEEDS have to come before wants.
Try to think about what he needs, a quiet secure environment, small classes, expert teachers. Many mainstream teachers have little understanding of autism, and with so many other kids in a class, can only devote a small amount of time to a child with special needs.

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I used to work in a mainstream school as a Teaching assistant. The child with special needs would always be put in a small group with the children with behavioural problems. Then I would sit with them and help them with their work. Usually the special needs child would want to learn and be well behaved but sadly the others on the table would be disruptive. This wasn’t always the case though.

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I believe that too, bowling bun, but it’s in his Dad’s hands, not mine. Social Services have no contact with the family, not even bereavement counselling after our daughter passed away. I just feel so helpless, and so worried.

14

One of our members, Melly, is an expert in autism related matters, I expect she will be able to explain things better than me.

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Hi Anne,
Sorry I haven’t replied to your post sooner - I have a lot happening at the moment.

Your boy has such a lot going on doesn’t it; he has lost his Mum, is living through a pandemic and now he is in year 6 and has the enormous change of secondary transfer to prepare. Also, although he is only 10 years old, many children with special needs have ‘precocious puberty’ - puberty that starts early and those hormones create havoc.

Is he holding it together at school apart from playtimes? If so, then the structured playtimes, when certain peers are winding him up, will certainly help. Does he have a ‘safe place’ to go in school when he is feeling wound up or anxious? I know you asked primarily about supporting him and managing his behaviour at home and your house, but stress from school adds up and if he is holding it together in school - then it he is more likely to explode at home.

Does he have an EHCP? If he and his Dad liked the special school, then the educational psychologist and any other professionals involved need to state that he needs a special school placement on the EHCP and school need to start evidencing why. If the local state funded special schools are full, then the LA have ‘look creatively’ at finding him a place. This means funding an independent school if they cannot provide him with a place in a state one.

Ok, back to home life. It’s great that he is having the counselling and that should help (is the person experienced in supporting people with autism?) Just one more question does your boy know he has autism?

How hands on was his Daddy before you lost your daughter? She probably had all manner of tricks and strategies in place that helped manage his anxiety. His Dad or you might benefit from a Cygnet course or similar which provides lots of autism specific strategies, and a chance to talk to other family’s dealing with the same issues. The SENCO should be able to find out if there are any locally.

Routine is as you know so important also lower demands (but don’t lose them altogether). Note what is triggering him at home so this can be avoided wherever possible. What are the warning signs before he blows? Spotting the early signs is really helpful as then he can be redirected before its too late.

When S was in his early teens he went from being a passive boy who coped well as long as autism strategies were in place to unpredictable, highly anxious, angry, lashing out and breaking things. It was a scary time. I turned our study/old play room into a relaxing room for him. Blackout blinds (as he calms quicker if its dark), a second hand crash mat, big beanbags, big gym ball and a soft plastic bucket with various fidget toys in that he could have the satisfaction of kicking over. Over time I taught him to go into the relaxing room if was getting anxious/angry and to stay there until feeling calmer. It worked for us. It needn’t be a whole room it could be a sofa in a curtained off area under the stairs or a transformed garden shed or whatever.

A referral to an occupational therapist via school or GP for a sensory assessment would be very helpful. They will assess is sensory needs and be able to plan strategies that help him self-regulate/keep calm. Often there is a wait for this. In the meantime, increase his exercise to help lower his anxiety and as an outlet for all the pent up feelings he has. Needs to be something he enjoys though - long bike rides/ running / boxercise/ gym / swimming etc

Melly1

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Hi, Melly. A really helpful response. However, home life is very unstructured. Daddy has mental health issues as well, and is struggling to cope, in my opinion. He had a very disrupted childhood, and has a history of depression even prior to his wife’s death 4 years ago and his best friend’s death 2 years ago. The family live in a 2 bedroom ground floor flat. The children share a bedroom. The lad gets very little exercise outside of school time. I did suggest he take self defence classes, such as Tae Kwondoe, which I know is non contact for juniors, but his Daddy reacted as if I had suggested we train him to be an assassin! No friends call to play with him. 2 girls from his class call to play with his little sister. I have finally managed to talk Daddy into letting her join Rainbows, so that she makes friends of her own age. She starts on Friday.

An EHCP is in place, and the SENCO is working towards getting a placement for our boy next year. So far, he has only managed one morning of school this week. He has now convinced himself that the staff are doing something criminal because he had to do quite a long period of assessments first thingbon Monday. It made his hand hurt - he struggles with writing anyway. He’s an otherwise intelligent boy. All this upset is holding him back.

Daddy did try to contact the Early Help people, but thanks to Covid he got an answerphone service, and goodness only knows when they will get back to him. They desperately need support that is beyond me to provide. I am 70 this month, with a list of illnesses as long as your arm, plus PTSD. I cannot take on the lad full time.

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The housing situation is probably making things so much worse.
Is it a council or housing association flat?
Are they aware that the lad is autistic. Usually under those circumstances the children should have separate rooms.
A residential school would make things so much easier for everyone, and give a much more structured way of living.

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I tried getting Daddy to sort out housing. Even got him signed onto the local council housing register a couple of years ago - it’s a bidding system round here. When the Council wanted further evidence of our boy’s special needs, Daddy let it slide. He’s now talking about trying again in a couple of years, so our boy doesn’t have to cope with moving house and school at the same time. The whole situation is driving my crazy.

I looked into Cygnets - the nearest seems to be Spalding, and we’re in Lincoln. Am trying to get Daddy to make contact with PAACT.

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Dad seems pretty useless/just can’t cope with it all.
He really needs a lot of support from someone familiar with policy, procedures etc.
So difficult to think of who, though. The pandemic has made everything so much worse.

20

Hi Anne,
If home life is very unstructured this unpredictability is going to be greatly fuelling his anxiety. Since his Daddy contacted Early Help himself, it sounds like he is open and ready for help. Does he tell school how difficult life at home is becoming? They could push for Early Help on his behalf, indeed should be actively doing so.

I agree that at 70, he would be too much for you to take on, especially as the adolescence is a tricky time, for all young people but more so if you factor in autism. Would his Daddy devise a more structured week for him, with your help, whilst waiting for Early Help to kick in?

Melly1

PS If he struggles with writing - reasonable adjustments should be made - a scribe or he can type the answers. Is there an autism team in your local authority that offers outreach to children with a diagnosis in mainstream? They are useful to have on board as they can help with finding a suitable placement and support the current school to meet his needs. Some support families too.