AIBU to sometime be extremely jealous of parents with NT kids

[Studyinghell]

Just tht really, not that I’d wish his personality away or anything like that. But when things are hard Im so jealous of parents with NT kids and kids with no medical conditions

Sinkgirl - yes I still worry that there is something that has been missed (& my son is 19 now). He has had two big regressions and I still can’t work out whether they are neurological or psychological.

Self injurious behaviour is one of the hardest things to deal with ime because it can be a ‘need’ so preventing it or trying to prevent it can lead to an escalation. It may be worth getting a sensory assessment although properly qualified sensory integration OT’s are rare as hen’s teeth. Also worth checking teeth etc to see if there may be any reason for pain. Pain or nausea can send ds1’s headbanging through the roof - we tend to give paracetamol if it’s really bad and we don’t know why. Diet has previously had a beneficial effect as well (particular food items must have been making him feel unwell).

Has your son had an EEG? May be worth it if possible (my son doesn’t really do EEG’s, the wires get taken off).

What does NT mean pleaae? Xx

YANBU I’m exhausted, no sleep and it’s week three of term and I’ve already spent 6 hours in meetings at school. At this point we are doing A Levels at home online, I don’t think either me or DD can do another two years of this.

NT = neurotypical ie not affected by a developmental disorder such as autism

No, no EEG at this point - he had an MRI a few months ago which confirmed the problem with his optic nerves and found scarring in the white matter but they say that can’t be the cause as it would have happened around the time of birth. Probably with all the hypoglycaemia.

We are still in the really early stages with everything but I will definitely ask about sensory support specifically when I see them again in December. That seems to be his main issue - I think he would play more if he weren’t so fixated on chewing everything.

children who are academically coping tend to be overlooked. My DS is really good at masking his issues at school and holds it all together. He is like a coke can being shaken up all day and when he gets home all the fizz comes out, sometimes in a burst of anger and frustration.
People just don't get it, with unhelpful sanctimonious comments even from school. Ir is relentless hard work and puts a strain on other relationships

Do you get portage sinkgirl? You used to be able to self refer & didn’t need a dx (no idea whether that’s still the case - my experience was in the Blair years when there was a lot more funding & support). It might be worth asking - they can really help with developing play.

Also the book baby talk by Sally Ward. An old book but a great one for play ideas based on your child’s language level.

Vicki Ds is like that, manages reasonably well at school. We get it at home.

We had a family occasion recently, it was noted how well he coped. I laughed and said 'it will come out tomorrow' and it sure did in spectacular style.

People don't see him when he is sat sobbing in my lap.

Yes, we just had our second portage session yesterday - glad I self referred when I did as we would have been waiting so long if I’d waited for the hospital to do it. They’ve been so helpful already.

Great :)

Yabbers , it doesen't help when people tell you that be thankful you have kids.

I lived on the SN boards for years, learnt everything about how to support DS1 there. Even met up with and exchanged equipment with some and went on training courses. Not quite sure why i stopped posting there. Will go back and have a look.

I completely agree with the OP though, nearly 14 years on and OMG it’s hard work. In addition to the physical disability I’m now dealing with mental health issues which lead to v challenging behaviour and huge academic pressure he puts on himself. It’s full on. On the rare days he’s not here I do get an heart tug for how easy it would be if we had two DS2s.

Devilish - I’m so pleased to see you and that you are still around. Although my DS doesn’t have ASD you taught me so much and I think of you and your DS1 at times. Sorry to hear life got even trickier.

Just had 24 month check for the other twin and it isn’t good at all. Now trying not to panic.

I hate all this so much!

hello sunsunsun! I'm trying to guess who you are now :).

Oh sink sending you a massive squeeze. Have they said anything definitive or are you waiting for more info? I find open ended conversations about "well it could be X or Y" have made my anxiety through the roof these days

Still waiting for more info on twin 2 - more tests being done, more assessments, etc.

I thought twin 1 was fine apart from the lack of speech, but going through the questionnaires today he’s scored really low for everything except gross motor skills. He got 0 / 60 for communication (I think that’s ludicrous - he does communicate, just not verbally) and 5 / 60 for personal and social skills. I’m in a bit of shock to be honest. They’re not doing anything though, just “we will keep an eye on him”.

Hi hairy :)

How is their imitation sinkgirl? Do they learn by copying you or do you have to teach things hand over hand?

Sink, there is (or was) very little info out there on non verbal communication esp receptive (what they understand)

They don’t imitate at all - like, not at all. Twin 2 used to imitate all the time before his regression.

If I do a song with actions and pause, they will grab my hands and pull them to the right place so I know they know the actions - it’s just like it hasn’t occurred to them that they could copy it?

I’ve just started doing the hand over hand thing (this is so embarrassing but it never occurred to me to do it before - I would just show them something and hope they would copy but they don’t). I managed to get twin 2 to try stacking bricks for the first time today - he couldn’t do it properly but he was trying.

Twin 1 is very good at working out how toys work himself so I don’t need to demonstrate too much for him. He can express when he wants something (brings his cup over and presses it into my hand, brings me duplo stuck together so I will take it apart etc).

I’ve decided I’m not going to worry about twin 1 too much at this stage, I’ll just keep chipping away and trying with the speech and see how he’s doing in a few months.

Twin 2 had a strange episode this afternoon - wondering if it might be some kind of seizure possibly. I got some video so need to run it past his consultant I guess. It’s so hard to know what’s going on and what’s related (or unrelated).

Thanks for letting me vent :)

Yes get video - it is really helpful and doctors love it. I have a folder full of ‘potential seizure’ video.

I wish early years people would check imitation skills. They tend to assume kids can imitate or don’t necessarily understand the issues if they can’t. Ds1 didn’t learn to imitate (we taught him) until he was about 8, but we had wasted years of Makaton waving hands at him when it was pointless - the only way he could had learned it at that stage was hand over hand. We didn’t really realise he couldn’t imitate until we started using some ABA with him. Once he could imitate he loved Makaton but could not learn it at all before then. He just flew once he learned to imitate.

I have some issues with ABA (& esp ABA programmes) but something it is very good at is teaching imitation. It might be worth looking at (basically you teach in trials - so say ‘do this’ then do an action such as clapping or touching your nose or tapping a table then hand over hand get the child to ‘clap’ then reward, then repeat. I paid psychology students to come in and do short sessions.

Without imitation kids can’t really learn to speak very easily (& verbs tend to remain a mystery).

In your shoes I would ask portage for PECS training (no imitation skills needed- my son was brilliant with PECS years before he was able to sign) & focus on teaching nouns. We had a ‘postbox’ or feed the monster game. Ds1 would post pictures of objects and I would just name them. He loved it and his noun vocabulary rocketed so his understanding increased as well.

If there is no training for PECS available look up the pyramid education two day course. Parents are half price iirc. pecs-unitedkingdom.com PECS was pretty life changing for Ds1. And once he had a way to communicate it helped so much. It also helped his speech and understanding as he could see how sentences are broken down into words.

Holy shit. That makes complete and total sense. Why didn’t I figure that out?!

Funnily enough I managed to get twin 1 clapping on his own a couple of times by doing exactly that - showing him, getting him to do it and then he started doing it on his own (briefly, for a few claps, but it’s something).

I will look into all those things, thank you so much.

Has anyone done the Incredible Years courses? HV is trying to get me to do it but it’s a massive commitment in terms of time and might be difficult around my very random very part time job.

Sinkgirl / I didn’t even realise ds1 couldn’t imitate until he was about 4. Unless you go into a specialist therapy where they check everyone just assumes they do & doesn’t understand why it is so important.

I would honestly prioritise PECS training over everything eise - that has the potential to make the biggest difference and can be done quickly.

Incredible Years looks like it’s aimed at NT kids?? Or maybe kids with ADHD type problems? It may make you feel worse...

Some of these courses are great - we did earlybird when ds1 was a pre-schooler and it was worth it.

I would ask the HV for more info. If it teaches you to ABC behaviour it may be worth it. If it’s about parenting neurotypical kids is less likely to be helpful if your child still has to master imitation. (Once they can imitate, normal rules become a bit more relevant ime).