To be angry that my DS's SN isn't being taken into account when meeting people's expectations

[Mischone]

My son is only 18mo and has autism which runs in his family on his dad's side. DS is severely affected and has almost no understanding and absolutely no words. He struggles alot on a daily basis with constant meltdowns as he can't express his needs or emotions and isn't picking up on alternative ways of communicating. Life is challenging with him but he's a wonderful little boy who brings me so much joy.

Potty training is a long way off as despite our gentle efforts he's no way near ready and doesn't understand/gets upset so we don't plan to try again until he's ready.

My father has just sent me a link today to some stairs which you attatch to the adults toilet and said he's going to buy them for DS so he can start using the toilet.

I reminded him that he has special needs and is a long way off being toilet trained, he replied "well I thought you could try and start showing him"

I'm quite annoyed and can't completely explain why, other than to say I feel as though he expects too much of him and doesn't understand that SN children meet milestones in their own time and you can't force an 18 month old severely autistic toddler to use a damn toilet.

I've had alot of similar occurrences when I've had to remind him that DS isn't a neurotypical child so he can't expect him to be doing X Y & Z when "he" thinks he should be doing it.

Hes my child and I know him best, if I say he's not ready then he's not ready right?

I think I'm being defensive, but am I being unreasonable?

Jeez just tell them all to fuck off.

Mine weren't autistic and they wouldn't have been ready to be potty trained at 18 months! Your father is talking out of his arse.

MIL was like this trying to push by buying a potty for her house and saying she would start without me ever having raised the subject with her. I very bluntly told her I would inform her when DS was ready and she was not to mention the potty or try it on DS until then. You have to be confident in your knowledge of your own DS and be fierce if necessary to put busy bodies back in their box. They can do more harm than good by confusing the child or traumatise them with negative experiences so your job becomes harder.

I feel as though toilet training and other personal parts of parenting are mine and DH's responsibility and anybody else trying to encroach on that is over stepping the mark.

This all day long. You don't need strangers on the internet to tell you. You already know it so don't worry about justifying anything or having to explain. Tell him it needs to stop. Because he won't otherwise and then it'll be another thing he's an expert on.

Not going to comment on the toilet training but if it's to give you hope dd was referred to the paediatrician at thirteen months with all the red flags for autism and diagnosed by her second birthday with a developmental age of between 6 and 12 months. She made incredible progress and quickly, she still has autism of course but she has no developmental delay (and was toilet trained age three) and is simply lovely.

God that level of invalidation of what you are going through is criminally frustrating. DS also with ASD was trained fully by 5. Not for the want of trying on my part or the “helpful interference” of others along the way. Frustrating but you definitely learn to tune out unhelpfulness.

@fleshmarketclose that made me smile! Can I ask what helped her best in regards to making progress? Did she have ABA therapy or another type of support which you/she felt was beneficial?

At the moment it certainly seems like DS is functioning way below his age. He has never clapped, waved or pointed or attempted to speak beyond screeching and his understanding hasn't improved past the 12 month mark when he would very occasionally respond to his name being called.

Well dd didn't laugh, smile, wave or clap at thirteen months and she didn't make a sound either. I put in place early intervention loosely based on ABA (I'm not an ardent believer) She made great strides. It took six months working thirty hours a week to get a noise but that was the start and we progressed quickly from then. At two she was developmentally 6 to 12 months at three she was developmentally 24 to thirty months by the time she left reception she was academically most able in the class and pretty much on par across the board.

Oh and dd only sat at eleven months and learned to roll at twelve months and crawled at eighteen months so she was very late in all milestones.

What a little star @fleshmarketclose that's brilliant

It really warms my heart when I read about ASD children thriving.

"Well I thought you could try and start showing him?!"

WTAF?

Is he expecting you to climb up the stairs onto your own toilet?

Anyway, what an ignorant busybody.

Yep I fully believe he expected me to stand DS in the bathroom and watch me scale the stairs over and over in the hopes that he would copy me, if only it were that simple

We've had similar from him about the fact DS won't eat with cutlery. It's not that we haven't tried to encourage him with toddlers spoons etc it's the fact he doesn't understand, can't copy and gets stressed out.

Sitting DS on the toilet would result in a huge meltdown and frighten him, let alone expecting him to know what the stairs are there for

SN or not, 18 months is tiny. I genuinely don't know anyone in real life that would even question an 18 month old still being in nappies! bizarre.

Ds is nearly SIX (he has autism) and has only been out of nappies 4 months and still needs underpants changing at least two or three times a day on a good day

For comparison at 18 months, ds was probably like a 6 month old baby although a walking running one.

Tell your interfering family to jog on! I wouldn't be able to stand people like this in my life.

@fleshmarketclose nice to hear your dd caught up.

did she continue to keep up? How old is she now if you don't mind me asking.

There is a quote around "Autism is not a processing error, it is a different operating system".

Milestone markers won't mean the same to you, because your DS is functioning completely differently. So while you will have to look at age markers, because the schools require them, don't get too hung up on them. Your DS will learn things when he is ready to learn them, and quite likely the process he goes through to learn them will be completely different.

Omg I almost forgot, and shoes!

DS has tibial torsion, pigeon toe and a condition with his hip which means his feet bow inwards and also has a high instep like his dad. He can't wear just any shoes we have to take him shoe shopping in person and find pairs that don't hurt his feet and that sit right which he can walk in.

Despite this DF insists on choosing shoes to buy him on his recent birthday, even though I made it crystal clear it's not that easy.

I don't think he believes I know what I'm talking about half the time.

My neurotypical son is 4 in November and only fully potty trained about 3 months ago (including a memorable week back in nappies as he decided that he preferred to poo in his pants...)

Sounds like your FiL just has no idea about developmental milestones for neurotypical children or those with SN. Do you have an attic? Smile, nod, stash in attic....

Hello. I've not read the whole thread, so sorry if I've missed something important. But the first thing I thought is that sounds exactly like my dad. He is absolutely lovely and has been amazingly supportive throughout my life. But he always wants to provide a solution as opposed to offering emotional support which he struggles with. I'm pretty certain he is on the spectrum. Perhaps your dad is too?

danni yes she kept up all the way through, she is sixteen now and probably the easiest teen on the planet tbh.

I don't think that telling your family to fuck off is at all helpful, brass.

My dd was similar, 18 months not showing real awareness of the presence of other. Fourth Birthday understanding of language still 12 months. 4.5, boom- language. 5 quirky, but reaching age appropriate. Age 8 quirky but lovely in her way, delay reading/ writing but I think she’s going to get there in her own way and one day catch up.

Don’t despair about severe autism at this age, it’s all open doors. Yes, he could be non verbal, but he may not be. I know children WAY ahead of my daughter that didn’t develop functional language. She was the one at all the courses post and pre diagnosis that people avoided a bit in discussion, seen as huge LD and people couldn’t relate to her/ us.

Personally I wouldn’t worry about teaching at this age, but expose without an end goal. Play on steps and don’t be afraid. Sit on the loo when in a good mood briefly. It’s doesn’t matter if progress is made or not. It turned out though my daughter had understanding, it just took her a long long time to communicate this back. She later parroted back stuff from the days when she showed zero understanding

(She potty trained at 6 btw)

We had a similar issue with DS and MIL, who insisted DH was toilet trained by 1 etc etc. In the end I said, rather exasperatedly, how did she expect him to tell me he needed the toilet when he couldn't even say Mummy. She did let it drop after that.

However, we did buy a toilet seat for him when he was about 18 months and sat him on it before his bath every night. But no toilet training as such.
When he was older, he then let us put him on it when we noticed he was about to go in his nappy. Which was easier than changing him.

So, what I'm trying to say is don't dismiss the idea out of hand. Some children with asd need a very long time to get used to new things. It doesn't mean you need to toilet "train" him right now. Just let him get used to it being there. And if it would make his grandad happy to buy it, does it matter if it's not used immediately?

To be honest I still have to tell DS (8) to go to the loo most of the time!

Potty-training has changed a lot over the years, perhaps your Dad hasn't caught up with the more relaxed attitude of today. Mum told me I was clean @ 13 months, dry @18. My son was later, but still nowhere near as old as some of the quotes on this thread.

My dad is obsessed with the fact that my nearly 5yo DS isn't potty trained. He is autistic too.

In the end I had to say, very firmly, 'I need you to stop asking me about his toileting, he is autistic and we will get there in the end'

My ds wasnt diagnosed as ASD until he was 9, was verbal & as bright as a button but still wasnt dry during the day until he was 3.5. 18 months is still a baby, a good proportion of NT children wont be dry by 2.5, so don't worry about that, SALT will help you with the communication, my late partner's daughter was diagnosed at 2 with ASD, ADHD & global delay, she had sessions with a SALT as she was non verbal & within a few months started to learn simple makaton, some of the signs she made up herself, but could make herself understood easily. Just take each day as it comes & don't worry about what anyone else thinks, it's your opinion that counts, your child will do things when they are ready, children of all abilities do, there are no hard & fast rules because every child is different.