Advice taking ASD out help!

[SpookyTheGhoulfriendScarer]

First I want to apologise for the title. I dont know where to start. My DD is 2, she is being assessed for ASD. Assessment is on hold until I get her into a private nursery which is 2 weeks away.

I'm struggling with day to day. Particularly if I need to take her out.
IF I get her into her car seat, I cant keep her in it. Then a series of 'meltdowns' (not tantrums) dictates where how we go.

I cant take my child anywhere. Really nowhere. I am stuck in the house because she loses control for hours!

Does anyone have a similar experience? Or been through this and can offer suggestions? I'm open to anything, I have tried everything.

Tbh I'm expecting ADHD coming our way at some point since DD is constantly being referred to as 'being busier' than other DC

Is it normal you cant take your DC anywhere? Ever? I do keep trying. I always need to leave.

Bump, desperate for advice

We definitely had periods where we couldn't go anywhere because ds would get too overwhelmed.

It might be worth doing ABC charts to try and work out exactly what it is she is finding difficulty. You basically keep a record of what happens before during and after an incident to try and work out a pattern of behaviour. Then you can remove the triggers.

It could be that she has a sensory processing disorder, maybe it's too loud or too bright or she doesn't like the confinement of the car seat? 'The out of sync child' is a good book to look at to see if maybe that's the case.

I suppose the other question is whether she is just happier at home? Ds definitely goes through periods where he doesn't want to go out of the house as it's all too much for him. During those periods I try and set up things at home so he still gets his needs met within the house.

Thank so much for replying. I've never heard of ABC charts before but sounds a good place to start. She used to love being out and about so it's really upsetting how difficult she finds it now! I'll source out the book, thanks for the recommendation.

Is there a way of settling her in the car seat by giving her an iPad or something? Not ideal but might work?

Does she melt down about going anywhere or is it that she doesn’t like it after a short while and wants to go home? Have you tried a visual timetable with her so she knows what to expect?

Our situation was not the same but ds would never want to stay at groups for longer than about 15/20 mins before he was ready to leave. This was also the case if we went to a family or friends bbq or event too but this changed somewhat when he turned three. For a year I took him once a week to a messy play session. He would always want to leave after about 20 mins but after he was three he started to stay for almost the whole session, though we had to leave before the singing started.

Then we hit a phase of him not wanting to leave places when it was time. This was much more difficult!

Things can and do change. As liv says, the best thing you can do is observe her and make notes so you can try and understand what the issue is and then mitigate those issues.

Could you use photographs so she knows where she is going and maybe two photos to show her what you are doing 'now' and what you are doing next.

@openupmyeagereyes DD can be difficult to control when we go into shops, she is very hyper and tries to grab everything she can and attempts to run away. Many meltdowns have been caused by me having to stop her. And I mean proper meltdowns! Took her into a clothes shop where she immediately started grabbing clothes. So I tried to divert her attention, sing songs but she then started kicking and screaming and crying. So I took her back to the car while DP quickly bought what he needed. DD thrashed, screamed and sobbed. It continue for over an hour after we got home. Nothing i try brings her out of it.
Other times, if she is in the trolley, or walking beside me nicely she will just drop to the floor screaming or start kicking the trolley. There hasn't been a pattern that I've noticed but it's a really good idea to keep notes! She does the same thing at home, just start screaming all of a sudden and I rarely get to the bottom of it.
Your DS sounds like what my DS used to do. He also has ASD and would develop a temperature and vomit if we stayed at any type of 'function' too long. DD hasn't shown signs of being distressed when family get together though.

@lorisparkle SLT sent us some laminated cards where we can insert photos, it's a great idea since she might not be understanding the word 'shop' mean the actual place we are going. But we already give her plenty warning about what we are going to do and repeat many times as well as what we are going to do next. That alone made a huge difference during lockdown because there was a point where we couldn't even get her in the car.

Have you had any input from an occupational therapist? She maybe experiencing sensory overload and the OT might have some useful suggestions.

@lorisparkle no, we've only had an appointment with a paediatrician who noted DD displayed lots of ASD traits, was doing things she should've outgrown and not doing others things (developmentally) that she should be. I was advised to get her into a nursery setting asap as the assessment cant continue until she has spent time in a social setting with peers. There hasn't been any mention of occupational therapists.

Your description of the shops sounds very much like a sensory overload. My two with ASD used to do that too - including dropping to the floor and staging a shrieking 'lie-in'.

The lighting was too bright. The noise was too loud (especially when shops played music or had tannoy announcements). There were too many people.

If you think your DD would tolerate them, mine used to wear ear defenders to filter out the noise and sunglasses to reduce the brightness.

I second the advice to speak to an OT or look into sensory integration therapies. The ABC chart should help give you some clues about what might be happening. My two were a mixture of sensory-avoidant (liked to hide in cupboards, under blankets and under clothes rails) and sensory-seeking (lots of running and jumping and often hyper).

'Now and next' strips also used to help. Mine had the simple PECS pictures on a small strip of velcro.

Mine were okay in car seats but I know other parents used Crelling harnesses to reduce the ability of escaping. One of mine was also calmer when he had a blanket he could stick over his head (the baby blanket style ones with plenty of holes to breathe through).

I tried to limit shopping to quiet times when there wasn't as much noise and treat it like a military expedition with a straight in & straight out approach. It also helped me personally to always have an escape plan in case things didn't work out.

Lots of sympathy. I remember those days well with DS shrieking on the floor and people staring at me and making me feel about three inches tall.