I have a non verbal child with learning difficulties and Autism. AMA

[PepperAndPops]

My son is 6 with a mental age of about 18months. No language and very limited understanding of what we say. Still in nappies and huge sensory issues. He has an Autism diagnosis.

I also have 2 other children with Autism but not learning difficulties and are verbal. And one neurotypical child.

Ask me anything

Have you tried PECS?

Do you have a family history of autism?

How do you communicate with your non verbal child?

What do you think about the welcome to Holland poem?

If your child is having a meltdown in public, would you want strangers to try and help or would that make things worse?

Do you worry that your nt child will end up caring for the others?

What toys do you buy your son??!! I ask as mother of a soon-to-be 9yo autistic with learning difficulties, and we're running out of ideas!

Do you have a family history of autism?
No, although there are a few family members that may well be Autistic but things were different when we were young and it's very hard to get an Autism assessment as an adult.

How do you communicate with your non verbal child?
Mainly he will take my hand to what he wants, or I will offer him something and he will either take it or push my hand away. It's very limited though and he can't tell me what's wrong when he is upset or anything like that. Even with pictures.

What do you think about the welcome to Holland poem?
I think it's great, it really does sum it up.

If your child is having a meltdown in public, would you want strangers to try and help or would that make things worse?
I wouldn't at all, unless he was in danger and I wasn't able to stop whatever was happening (hasn't happened yet but he is getting bigger and stronger and has an overwhelming urge to touch moving cars/try and run in front of a moving car). I would much rather be left well alone when dealing with him in public tbh.
But I know others who feel differently, I personally would find it very stressful to have a stranger intervene and I think my son would too.

Do you worry that your nt child will end up caring for the others?
Yes, and in many ways she already does, at age 10. She is often helping with the youngest (ASD but understands) while I deal with incidents with the more "difficult" child. I feel awful but sometimes it's the only way. She enjoys it though and wants to do something similar as a career, to help people with SEN. Which is lovely :-)

Have you tried PECS?
Yes we have, but with very little success. He will use them in ONE situation - school snack time. But can't manage to extend this to any other time. He is at a SEN school where PECS is a big thing but they can't get him to do it.

What toys do you buy your son??!!
Erm - puzzles, he loves puzzles. Cars, noisy toys that you tend to get for babies around 1-3 years, like light up button things. Figures, from tv shows he likes, he loves to carry them around. Squishes are a popular toy at the moment too, which make great sensory toys
The all time favourites though are the trampoline and the iPad. But he becomes very overstimulated by the iPad. Oh and a special needs swing he loves too!

What about ABA methods? Do you know the VB MAPP?

If he can use PECS for snack time he should be able to use it for trampoline and iPad

Four kids is a lot. 3 with challenges is super hard. Why did you have more? What were the risks?

Have you heard “the reason I jump”? It was written by a non verbal 13 year old with autism and is fascinating

www.bbc.co.uk/programmes/b02yjf17

How were your DC DXed? And how old were they?

My son was DXed via paed, EP and SALT over a 6 month period when he was 2. I know we were lucky though as most families we know went through CYPS/CAHMS and it took years or is still ongoing.

You said he has a mental age of 18 months.

What was his development like when he was a baby? When did you first realise he had issues?

Is he in mainstream or special school? If special school was it very hard to get him in.

Do you worry about what will happen when you're gone?

I'd worry that your NT child would feel obliged to take over. But what if she met a wonderful New Zealander and had an amazing career opportunity. But had to say no because she has to look after her sibling.

Wtf to some of the comments on this thread

@pepperandpops I also have a son with asd who is non verbal 👋🏻 He is only 2.5 so who knows how he will progress but I just want to send it can be a lonely road with no-one who understands (as proven by some of the frankly ignorant comments on this thread) I don’t want to ask how much time you spend worrying about his future, about how his siblings will be impacted, because I already know the answer, what I wanted to ask is you find joy in the little things like I do, today I spent an hour on the floor with ds making him laugh with delight at a bubble machine, it has taken me so long to realise I need to stop trying to make him match others pace but just to go with his, life is much more simple and much happier :)

Sorry if I upset you MissMalteser. But it was what went through my mind when I had an anomaly when pregnant with my 2nd DC. I felt that I had to take DC1's future into account too.

How do you convince your NT DC that she must seize her own opportunities not curtail everything just in case.

He is in a special school, and due to the extent of his learning difficulties I didn't have to fight at all. He was there from the age of 3. He has an EHCP at the age of 2 when he attended a preschool, which I had to drive 30 mins or so to every day because it was the only one I could find that could keep him safe.

As for having all 4 children. If I'm totally honest, if I had know they were going to have special needs I probably wouldn't have had 4. But obviously I love them all to bits having had them. What happened was the eldest is fine, and very advanced as a baby. Then I went on to have more, all had a close age gap, and therefore was blissfully unaware at the time. My son was around 18 months when we realised it was more than just being a bit behind, by that time I'd just had baby number 4. Even then we didn't realise what was wrong. We thought he may have had ear problems so waited for tests etc for that but all came back fine. Nowadays it is extremely obvious that he has learning difficulties and ASD. You can tell very quickly without having to be an expert, but as a baby it's harder. Especially as he was my first boy, people kept saying that its just because boys develop different to girls etc when i first started noticing stuff.

My daughter, is 9 and still has no diagnosis. I know she has Autism, I know enough about her and about Autism to know. But because she masks her difficulties at school, it's been extremely hard to get her the help she needs. She has recently been seen by specialists at GOSH and we are waiting for the results. I first raised concerns with her in Nursery at age 3 and the teacher (who is also the senco) pretty much laughed at the suggestion of Autism. Made me feel really stupid and I then dropped it and blamed my parenting for a few years. Then it was a totally coincidence apparently that I then went on to have 2 more children and both have a diagnosis of Autism.
School still don't support us and think it's me. This is the hardest bit. At least with my boys, they have support in place. It was when my first son (child number 3) was diagnosed and I went on various courses and did loads of research that I realised that my concerns back a few years with my daughter were not me being rediculous at all. So went back into school - 3 years later and they still don't listen.

@whiteroseredrose my comments where not targeted at you specifically, the other comments where also the point is just because we live this every day doesn’t mean we have all the answers, if we did life would be a lot more simple, for me I am lucky that we have some immediate family who we hope will be there for ds if anything happens to us but I spend every night of my life worrying that nobody else will ever know him like I do. That his siblings will feel obligated to step in no matter what I tell them, his big sister is 15 and I already feel how protective she is of him, but how can I prevent that? I can’t, and to be honest I don’t want to, someday both dh and I will be gone and I hope to and pray that by then we have a plan in place for him, but he may never live alone unassisted. And there are thousands of parents all over the world with the same worry, and I thank god every day he is my youngest and he has his siblings because if the worst comes to the worst he will always have them. It’s not what I would wish for them but it’s not what I envisioned for him either

@MissMalteser I don't really know what to say. You've voiced all the things that went through my head but you've no doubt got them at the back of your mind all the time. It can't help that facilities and resources are constantly under threat. Here's hoping at least that this will change soon.

Thank you @whiteroseredrose and sorry for hijacking your thread @pepperandpops

I have a ds with very similar issues OP, just here for a hand hold

Do you ever get really frustrated and annoyed by people who tell you that autism is a gift and is just people 'thinking differently' and if only they world were more accepting and accessible they would be fine? I do!!

Hi op, in similar situation (except no nt kids, they all have sen). Just wanted to say hi

Yes it's bloody annoying when people go on about Autism and gifts. To be fair, my daughter (suspected ASD) is extremely clever and has the most amazing memory. However when my son has a very low mental age and struggles to do even the most basic of tasks, it's very frustrating when people are asking me what special gift he has etc - especially in front of him. He doesn't have one, that we are aware of yet anyway, and therefore why should I have to explain that, in front of him?! He doesn't appear to be taking anything in that we say but I couldn't guarantee it, and therefore keep positive when he is in ear shot.

My 8yo sounds very similar to your boy but is home educated. How do you not worry constantly about his future?
How do you respond if you get comments regarding nappies?
How do you cope with 4?

I ask because I worry myself sick all the time, I’ve had comments about my son being too big to be in nappies and I’m terrified that if I had another child I couldn’t cope (although as a single parent for his whole life I’d hope if I had another id have support!)

I'm a single parent too, and it is bloody hard coping with all 4, especially as 3 have additional needs and therefore the one NT child is always fighting for my attention.

I do worry for their future, but I concentrate on the here and now, and TBH I don't have much spare time to worry about anything further than the next couple of weeks

I rarely have any comments about nappies, I guess because you can tell very quickly that he has additional needs. We were at a school funday recently (mainstream school, his siblings school) and some of the bigger kids were making comments on a bouncy castle about him wearing nappies. But they weren't nasty, you could just tell they were a bit surprised and curious. They kept trying to ask him why he was wearing a nappy but of course he just obliviously jumper around not taking the slightest bit of notice. I know I should have stepped in but im not great at thinking on the spot and it took me by surprise so just kind of froze I guess. But wasn't upset by it.

I'm quite lucky in that I couldn't care less about strangers looks/tuts or comments, I just involve myself in my children and Choose not to even notice.
It's harder when it's people you do know though.