Anyone fancy a support thread for parents of severely autistic non verbal children?

[parrotonthesofa]

Hi!
I have a lovely 10 year old boy who is severely autistic, non verbal with a large developmental delay.
We cope ok but I feel like I have no one to talk to who really understands what it is like. I've been in various autism groups but the spectrum is so large that children with the severity of mines needs are few and far between.
He's currently having a huge meltdown, I've tried to help but he doesn't want me there so I've just had to make sure he's safe and wait til it passes. I find it so heart breaking and it all feels every Groundhog Day. Same with bedtime, it is a slog every night.
Anyone fancy joining me for a support thread?

Hello there

My daughter is 4 and is predominantly non verbal. Our LA has only just this week agreed to specialist provision.

My daughter frequently bites and pinches and the meltdowns are very difficult to cope with

It's hard isn't it!

I do find that most of the time I can just get on with it and find the joy (cringe but you know what I mean) but sometimes I'm just like arghhhhhhh. The worst is the crying when I don't know why and I can't help fix it because I don't know the cause.

I’m here too. My son is 14 and I find at this age there’s very little support for parents. Also I’m at the stage where I have to start planning for adulthood and I know I cannot look after ds at 17/18 but it’s so hard to find anyone that’s been here at that stage.

Ah yes the teenage years will soon be upon us here too! I haven't given it much thought yet but I'm guessing it will bring a whole set of new challenges.

Can I ask how you cope?
Do you have direct payments for carers?
i started direct payments when ds was 9 and recruited carers from my sons specialist school.
I cope by running . I started the coach to 5k during Covid and never looked back, even though I have flat feet and I’m the least likely runner in the world ever. After a few years it’s helped with coping. The only place I can listen to music too.

maybe we can share tips
on this thread as to how we all cope and what we do. In our world with children at this severity it’s very difficult to find similar people but let’s share what works for us. What we are thinking. What services are available for us and our children.
This would really help me. I’m always conscious that at this level of need , you just don’t know what’s out there, what other people access.

We are in France (I'm British, my partner is french).
He goes to a great school and they take them half of the holidays and as I'm a teacher that gives me a little bit of time every few weeks or so when he is at school and me and my other child are not.
Are you on your own or do you have a partner? My partner works long hours but we mostly do 50/50 for thé bedtime so I get every other night off it.
It's a slog though. I do sometimes feel like I am going a little insane. I also have regular migraine which makes it tricky.
I would love to run but I can't find the time. Obviously I can never leave him unsupervised and my partner gets in late. How do you manage to find time? I also have flat feet!

We go out of the house A LOT too. Tends to have more meltdowns in the house because he gets bored. He has a trike which he rides well so we go out I. That a lot, he loves swings and things so we spend a lot of time at the park when it is quiet. Drives in the car used to be a good one but he can have quite dangerous behaviors in the car so I do it less.

Ditto the dangerous behaviours in the car.
we used to love drives. I have a category 7 harness but I never use it. I feel like it’s pre-empting behaviour and I like to give him the benefit of the doubt. But in truth, I hardly take him in the car now, unless it’s doc apts or haircuts.

i have a husband and a younger NT son - 2 years difference.
They are almost never in the same room together anymore.

I think my older ds knows he’s different , I think he struggles with that and lashes out at his younger brother because he can talk.

i sometimes wish he didn’t have that sense so he wouldn’t feel that pain. My husband thinks I’m crazy to sometimes wish he was more disabled in that way, but the truth is, I think we could do more together.
At 14, 5’7 and heavier and taller then me, the reality is, I can’t do as much as I’d like with him outside. He’s far less tolerant with me.
the upside is he’s happy doing scheduled activities with his carers.

I might look at a trike, we used to have a tandem bike, he loved that. Cannot recommend it enough, we used to ride it by the beach which isn’t far for us.

What's a category 7 harness?

I've got a special harness that cost me 140 euros but he can escape from it! 🤦‍♀️

I don't think my son is aware that he is different, he is really very severe with a big developmental delay. He doesn't have much of a relationship with his sibling, it's a if he doesn't see her. She tried for years but eventually gave up.

As for the tandem, was it a special needs one? My son would not be safe on a normal tandem.

How does your son sleep? Mine didn't sleep through the night til he was7. Now sleeps through the night but often struggles to get to sleep. He's usually asleep by half ten eleven ish but sometimes just can't get to sleep. It's currently 130 and still going strong 🤦‍♀️

The tandem Was a special needs one which was made by a kind company in the UK , it had basically a big basket that he sat into at the back with Straps everywhere.
the category 7 harness is a Crelling harness that we have. He cannot escape form that and stops him leaning out towards me
in the car.
No relationship here either with the sibling other then to lash out if he passes. It’s one fo the greatest sadnesses I feel.

We have melatonin prescribed for sleep - works within the hour, only 2mg but I still sleep in the same room. I’m embarrassed to say that out loud sometimes. Awake at 5.
melatonin was great. Blackout blinds, nothing in room, neutral colours, and air con. Temp at 18 seems to really help.

Yes one of my biggest sadnesses too.

He has 4mg of melatonin!! Does not work anymore.

I'll look into the harness.

He's come home from school and is hysterically screaming. Probably because he only had 4 hours sleep. The only good thing is that he should go to sleep early tonight!

Google Crelling . If it’s something you want they are a company by sheer coincidence not far from me, I can get you one and post it out to you.

Hysterically crying. I always think ears , infection, pain? My first port of call is calpol. If I notice a difference in 30 minutes it’s related to pain.

my son has allergies so we mix our melatonin with an antihistamine - this also has a sedative effect. The doctor prescribes it but you can get it over the counter too.

Ok maybe we should try that too then.
And thanks for the kind offer! I'll look into it. Could also get it sent to my parents.

Yeah the crying is difficult. If prolonged I treat with calpol but he will often calm of his own accord after about 15 minutes or stops if I manage to distract so I think most of the time it is not physical.

He does though have some health problems linked to a genetic mutation (which is actually the origin of his learning disabilities and autism too) which can sometimes give pain so if I think it's that, I give pain relief.

It's the trickiest part I find, not knowing what is wrong. He cant show me if something is hurting either.

How old is your younger child? How does he feel about his brother?

My youngest child (12) tried for many years but also now has given up. They are usually in separate rooms, He loves his brother but there is no relationship. When they were younger they could be in the same room but not in the last 3 years.
we also had the genetic test and a mutation showed up but they couldn’t definitively say it’s as the cause of the autism and SLD. Only time will tell if more are tested and happen to have this certain mutation .

A support thread is very welcome, thank you. The parents of autistic children I have met have had 'higher functioning' children, so I don't really relate to their experiences much at all.

We accessed respite one night every fortnight and it was life changing for us.

what I would recommend though is to keep it in the school term time so they go straight from school. It was a nightmare trying to do it in the holidays, pecs cards caused a meltdown and we had a lot of aggression.
moving it school meant they took on the transition so there’s no feeling of rejection (again, I can’t be certain my son felt rejection or just didn’t want to be away from home which caused the behaviours), and also I would recommend that he goes with a pupil form school to respite so it feels like more of a trip and an extension of the school day.

im not going to sugar coat it, it took about a year for my son to accept and whilst he may accept it, Myself and school still have meltdowns near to the time.
But for us this is the first step towards supported living and getting ds used to being away from home.

how is everyone else feeling about the transition to adult services? I’ve heard it varies so much from one side of the country to the other

Welcome, revan! How old is your child?

Fortnightly respite sounds great. I'm not sure if that's a possibility here (France). My sons school does have a residential part to it though but I think they stay all week. I dont feel ready to do that yet either, but hes still only 10.
Luckily my pils take him for the night once a month which gives us a little breather.

I haven't started thinking about adult placements yet. He can stay in his current school until hes 18 and even then they wait until they have an adult placement before chucking them out.
I can't imagine him not living with us to be honest but I know I will have to think about it at some point. It's scary. They're so vulnerable.

Yes finally! Sorry for the long post in advance.

I feel exactly the same. All my "autism mum" friends have children who are higher functioning than my son. I've really yet to meet another mum whose child is as severe as mine and parenting on their own. He is 13, non verbal, has learning difficulties and ADHD. He's bright in many ways but is functioning on the cognitive level of a 4 year old. I have no support from his absent father at all. I love him dearly, but I am feeling very worn out now with trying to meet his needs everyday. The older he's getting, the less my family are willing to help out.

He has access to overnight respite 2 nights a month. Seems impossible to find a suitable PA through direct payments.

I feel awful for contemplating it, but I'm considering residential school options. I don't have the backing from social care and since his school are "meeting his needs " I doubt I could go down the educational route either.

Anyone have any advice of helping your non verbal child communicate. He can use PECS, but its useless for communicating emotions and illnesses?

Has anyone managed to get their child a residential school placement with no backing from social care or education? If so I'd be grateful to hear about your experiences and how you did it.