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

As someone else said, have you tried ABA with him? I teach in an ABA school, and some of my pupils sound very similar to him. One of them is lower in development age and we’ve taught him PECS using ABA. It’s taken him a while, but he’s doing so well with it now. He still mainly asks for food but has started asking for other things recently. He can also travel quite a way to his PECS book and then come and find a teacher.

Do they have sleep issues and how do you get them to stay asleep?!
I'm absolutely exhausted because DS just doesn't sleep more than 4/5 hours a night on a good day!

I haven't done ABA no. I'm ashamed to admit I dont know a great deal about it. I did try and research it about a year ago but most that came up seemed to be in America and/or very negative.

Yes they have sleep issues and it's exhausting. 2 of them are on Melatonin which helps but doesn't solve it. My youngest really needs melatonin but have been told I have to get him re referred to CDC and go on the long waiting list

I am hoping they will pull their fingers out their asses and give us melatonin next month

You don’t have to answer this but did you split up from your dp because he couldn’t cope with dcs with SN?

Andro - kind of. It was the stress of everything, mainly 3 x Sen that took its toll on the relationship. I was constantly exhausted and stressed and he was too but from working 7 Days a week to fund everything. Now we both get a break when needed as we have separate houses. He is a great Dad though and it would be much harder without him. He has been more help since we separated (end of last year) than he ever was when we were together. I think because when the kids are not there, he misses them.

That is tough OP.

Have you looked into the family fund at all? They can provide funding each year towards holidays/items to help and for NT siblings to give them experiences or things that they wouldn't normally be able to have/get.

I have a ds with ASD who is somewhat verbal, but it is disordered. We use PECS for snack time too. We have had some success for requesting other items such as favorite toys using photographs of the objects not symbols, it took a while though.

Have you thought about training in Makaton? It really changed our lives and is a great skill to have.

She enjoys it though and wants to do something similar as a career, to help people with SEN. Which is lovely :-)

It’s what one of mine did after deciding that her initial choice of study wasnt for her. She’s now an SEN teacher with a Masters in a relevant topic.

We knew all along that teaching was for her but we had to let her realise it for herself. Shes just fabulous and when I look at her or listen to her speaking on a professional level my heart bursts with love and pride and a whole lot more.

My son is now an adult, late 20’s. He was diagnosed with Classic Kanners Autism when he was 4 but I knew from the time he was 8 months old he was autistic. I’d read a tiny article in a woman’s mag written by a mum and I just knew ‘DS is Autistic’.

To cut along story short my son started to talk when he was 9. He’d been non verbal till then. He was a fabulous artist and play dough models he did looked alive. One day he started making noises and my friend who was at home with me said that sounds like the noises a baby makes when they’re lying in their cot. And sure enough it was his precursor to speach. He’d actually been silent till then and I would even be scared to go near his cot when he was little in case he was dead. I’d enter the room and bang the door against the wall because I was scared but he’d never ever react. Oh and the more words he started to use his artwork and modelling became less. He wont draw or colour at all now but he does like to buy those magic painting books off Amazon that he keeps on his bookcase. His first words were a sentence and he said them when we were out driving. I was so shocked I though one of the neighbours children had sneaked in the car with us.

Anyway I did home ed with him and despite his condition deteriorating the older he gets, he also has a dx of Tourette’s, frontal lobe epilepsy and mental health problems I’ve still got him at home with me. My husband has long since gone but not before he set us up in a custom built house that caters for all of my sons needs as well as the rest of the families. It means we can still be a family despite some very challenging situations but most of all it means my son has the best chance possible of getting up in the morning and having a good day. Not that I take care of him alone. I can’t anymore given my age/his difficulties so I have a team of 5 carers that my husband funds and between us (and my other children who are all older) we manage the 2-1 round the clock care my son needs. But even there should always be a definite 3 person around and preferably a 4th.

I’ll be forever grateful to everyone who helps give my son the most comfortable day possible because without them life would be very different for all of us.

I’m sorry if I’ve gone on had one but my heart just bursts with love for my son and I love talking about him.

What a lovely post Hattie

Pepper, you sound like an incredible mum. They are so lucky to have you.

The language around this seems to get really emotive so I'm trying to word this as best as I can, please forgive/correct me if I get this wrong or put my foot in it.

But on other threads, people have seemed very hostile at the idea of people like me saying I'm autistic when there are people with the same label who can't even talk or look after themselves.

Do you get annoyed when I (or others) on Mumsnet talk about our autism? What can we do to help be less annoying? What can we do to help autistic people who struggle more than us? Can we do anything at all?

I'm watching one group try to appropriate the name and resources of another group elsewhere, and I'd seriously hate to be doing the exact same thing myself without knowing it.

My dd sounds similar to your ds, Asd, non verbal, 5yo - developmental age of about 18-24m.
Does your ds wear a medical bracelet/gps watch? My dd is an escape artist both at home and school (currently mainstream starting sen school in Sept) I worry what will happen if she gets lost and can't tell anyone who she is or where she lives. Likewise in the car, if we were involved in an accident.

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

Its be reasonable to assume this would be the case but it’s not. Transitioning of any kind can be very difficult for this on the spectrum and it’s common for people to only do something in one situation/circumstance and not another.