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?

No, you're not being unreasonable at all. Probably better to say, "Thanks, I'll look at something like that when he's ready" and just avoid the conversation with him. Your son sounds lovely.

18 months is too young regardless!

He's not being realistic at all, he's months away from this.

Thank you, I know I sound like a real ray of sunshine but I'm so tired of having to justify DS's developmental delay to somehow who knows as well as I do that he's autistic

In a way it's like rubbing salt into a wound, needlessly reminding me that he's not catching up with other children his age.

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.

He’s probably coming from a good place with it. Has he got the wrong end of the stick and thinks your DS dislikes the actual potty and would prefer the real toilet? 18 months is sooooo young for most children to start potty training though! It must be very wearing for you to have to keep repeating yourself about ‘typical ‘ milestones .

There has been many occasions where he has suggested buying things for DS that are well beyond his level of understanding, it almost feels like he's testing him in a way or that he thinks autism is something we can snap him out of if we do the right things. Very frustrating.

as a parent with 2 kids with disabilities i would be nipping this interfering in the bud now other wise he will be having a opinion on everything your son "should"be doing

for all you know he might never be ready and still in pull ups as a child
in the disabled group we go to there is a lot of 8+ still in nappies,2 of them teenagers

My DS, who does not have autism, only managed to be toilet trained just after he turned 4 - and I really pushed him because he was about to start school in September - it definitely wasn't easy! Some children just aren't ready, regardless of SN.

I think he over estimates DS's level of understanding and that's partly what upsets me because we've gone around the houses 100 times explaining in great detail his condition and limitations

This is a tough one. You need to remember that although YOU are living with an SN child whose needs you are learning as he grows, others have not had that experience. I was talking to a grandmother this morning who has an Aspie grandson (now adult) and she openly admits that she did not 'get' this boy until he was at least 5yrs old despite being very close to her dd - his mum, and accompanying her to many of his appointments.

My own dd is equally challenging and at 9 is still awaiting formal diagnosis and so many adults do not 'Get' her despite best of intentions. My dh/her dad still finds he is often 2 steps behind with her as he only sees her at bedtime & weekends and doesn't do any appointments because of work.

You may also be seeing in your inlaws that they can cope /understand - that is because your husband grew up with them and to a degree they will think he is normal.

One of the most difficult things about SN children is that adults dont understand often no matter how hard they try. My advise would be to back off a bit with your family, dont scare them away. Let your dad get his steps - it ight just be a game anyway and it is likely he will potty train at some point. But get yourself I to the sn groups, make so friends with similar diagnoses as your son. Dont isolate yourself by saying people dont make allowances/understand. AND dont beat yourself up about it - it is a long tough road

Yanbu. My 13 year old ds has autism and was diagnosed aged 9 so probably a lot less severely affected than your ds. He was dry in the day at 4. My 5 year-old ds is being assessed for autism and he was toilet trained at 3y 9m but still has accidents even now if something upsets him like a change in routine.

I'm sure your father means well, but he seems quite clueless to be honest. 18 months is very young for any child to be potty training, let alone one with significant Sen.

Would he be willing to attend an autism for families awareness session, or even read a few booklets on it?

Thank you,

This is the second time this year I've had to tell him DS is not ready for toilet training it's like he doesn't listen to a word I say and knows best despite hardly seeing him because he lives 3 hours away.

I understand that he knows DS alot less than we do and has no experience of ASD but that's why I feel he should listen to me when I tell him what he can and can't do yet.

My son is 2.5 and doesn’t have the same issues facing your son, and is only just starting to potty train. His nursery told us there is no point starting until they can understand the concept of using the toilet, so please tell your Dad in the nicest possible way to stop interfering! Don’t let it stress you out to much if he is normally supportive though. Do you think he is in denial over your son’s autism?

I totally hear you OP. My DS is now 14 but was born with severe learning difficulties. He cannot talk, feed or dress himself, is doubly incontinent and is also partially sighted.

He is the joy of my life.

Last week I got asked by someone who know's him very well, "What does he want to do when he leaves school then? What job is he interested in?"

We have had similar all through his life and I have developed the hide of a rhino and the waterproofing of a duck.

I think there's a degree of denial involved yes, he's said a few times he might "grow out of it" which is frustrating in itself.

He spends alot of time on the internet and claims to have done some reading up about the condition but not enough clearly.

I can't see him comitting to going to any in-person sessions to learn about ASD. He's an armchair expert

Wow, the stupidity of some people astounds me @LEELULUMPKIN

I feel the same about my DS being the joy of my life and it wouldn't matter to me if he was never out of nappies, I think SN children are perfect just the way they are

Does your son have a diagnosis at 18 months?

I agree it’s too young regardless

It sounds to me like your dad is in denial!!!
My ds has severe learning disabilities and autism, he was 9 before he was dry in the day!!!
Go at your own pace, you know your son! You will come across lots of stupid people along the way, deep breath, ignore and do it your way!

Urgh this is annoying enough with a NT child - my mum was asking "Is it not about time that child was potty trained?" when said child was 12mo old FFS.
If I had an autistic child it would drive me bonkers hearing this shite.
Your DF might think oh it won't do any harm to stretch him a bit...are there any good resources to teach people how stressful and frustrating it is for autistic children to be "overfaced" with something too advanced for their stage of development?
You could always start buying your DF a new language tape every week (Mandarin, Arabic, Japanese and Hungarian are supposed to be among the hardest) and express surprise when he isn't fluent in them all by Christmas.

He doesn't have a formal diagnosis yet no, he's been referred to a paediatrian for that but all professionals who know him have agreed he has every red flag and is being supported for it prior to DX.

He goes to a SN play group and has SALT which is yet to prove helpful.

We know what to look for as his half sibling on dads side (diagnosed) has it and dad also has it (diagnosed) but even without the family history it's glaringly obvious.

You could always start buying your DF a new language tape every week (Mandarin, Arabic, Japanese and Hungarian are supposed to be among the hardest) and express surprise when he isn't fluent in them all by Christmas. brilliant

I noticed you say that he is not ready for potty training despite gently prompting from you. Have you mentioned this in conversation and this is where your dad’s ‘good will’ is coming from? He’s taken the cue from you saying you’ve been trying?

For what it’s worth both my boys were potty trained, and dry by two, which was really early compared to the rest of our friends, although 13 years since I last potty I can honestly say I can’t remember the average age span of it happening. So 18 months is really early to be trying, regardless of it that’s a child with special needs or nt. But if he’s showing all the signs that he’s getting ready then that’s really good.

My daughter who has no sn was 3 when toilet trained. Just turned 5 and still wears pull ups to bed. As did her sister until she was just turned 8.
Toilet training and dry nights will happen when a child is ready and not before.
Good luck xx

I've responded to him with this, and the following link.

*He has no understanding. He can't even mimic a wave or a clap if we try to show him how to do that. Putting him on the toilet at this age is going to do nothing but send him into meltdown and scare him. Some children with ASD are still in nappies at school age, but regardless, most 18 month olds without additional needs are not even toilet trained at this age.

www.sharecare.com/health/autism-spectrum-disorders-asd-symptoms/why-toilet-training-difficult-autism