Exhausted by life with a neurodivergent child

[bjorni9]

My son is 7. He has adhd and autism. We are on a waiting list for medication. I am completely exhausted. I was watching a video today where kids pranked their parents by telling them to shut up and the other parent immediately got up to tell them off, and it made me think about all the times my child mid meltdown has said awful things to me. He hits. Punches. Shouts. Screams. Not all the time but he just loses control when things don't go his way. My mum is a psychologist and says I am doing everything right and even she doesnt know what else I can do other than try meds. I am hanging all hopes on medication which I know I shouldn't. He is so hyper, constantly touching me and gets out of bed to try and get in mine 10+ times a night. I feel isolated as the other parents in his one sports club that he adores and keeps him grounded constantly try to give me advice and say things like 'he just needs to learn how to banter back 'when he gets upset at the other kids 'playfully teasing'. It makes me feel extremely judged and like I dont want to be there. He is a flight risk. Trying to get him to stop doing something he is enjoying can take up to an hour of management so there's no meltdown. I just dont want to do jt anymore. There is no support out there and I don't enjoy my life anymore. I wake up dreading the day. I cry a lot. I am scared he will never be a decent adult. I feel sorry for him (and occasionally myself!). I am trying but I don't know what to do anymore. He isn't like this with anyone else and for some reason his behaviour with me, and only me can be extreme. Feeling so lost.

Sorry to hear you are going through this. Have you reached out to autism support charities?

Yes I did speak to one. They just pointed me towards a group who meet in my city, but only on weekdays and I work. I have just given up a bit which I know is not good.

Are things much worse and coming to a head because of the holidays? It sounds really full on and challenging.
Have you been on post diagnostic parent programmes such as EarlyBird Plus or Cygnet. Any inclusive clubs or SEN support groups/ activities in your area? Look on your LA SEN local offer.
Does he see a Paediatrician? Has Melatonin been mentioned for night time? Things must be even tougher on little sleep.
Does he have an EHCP? Have you tried PDA strategies? I’m sure your Mum has made suggestions.
How about a Sensory OT assessment? Not all OTs are qualified and you may need to go private.
Sorry about all the questions just trying to cover a few bases.
Try not to think too far into the future I know it’s hard not. Prioritise what is causing the most difficulty and look for strategies for that. You can’t address it all at once.
Make an appointment with the SENCO and chat through what has been happening. They may be able to help and should be able to signpost to services.

Have you considered melatonin for sleep? My autistic DS started it a few weeks ago. Days are still full on but having a couple of hours in the evening to decompress and a full nights sleep has been life changing!
Maybe finding SEN groups could help, there is a charity called Bee Unique in my area who do lots of exclusive bookings for SEN children. My DS is more chilled there than when he attends generic activities. It's also nice to not worry about being judged.

Saw you reply to a PP
Heres an online parent support group and resources

https://www.ambitiousaboutautism.org.uk/what-we-do/services/i-am-a-parent-carer/parent-carer-online-community

His behavior with you is worse because he doesn’t mask with you. You are the person he is most comfortable with in the world. That means you get the worst of him, but you also get the best of him.

If he is able to mask in some situations, there is a good chance you will be able to help him learn to regulate himself at home.

my first suggestion is always take yourself out of the equation for common points of conflict. Use charts or other systems to help your child do things that are triggering battles and meltdowns.

For ending an activity, try a clock he can read. This can be a traditional clock, one with color coding, or just a countdown time with color coding.

when you need to transition, state what will happen next. It is important for transition management. Them set up the timer where he can see it. It gives him a chance to see the remaining time and he knows are winding up. Again, you aren’t the one counting down anymore. You aren’t the villain.

Other people have offered good advice. I don’t have ND children and I don’t comment on people’s kids when they do because it is clear that normal parenting strategies simply don’t apply when people are parenting kids with additional needs. So please ignore the comments.

Also all kids are at the worst with their own parents. He is holding himself together with other people, you are his safe person and he can fall apart with you. It’s a sign you are doing a good job.

Would you be open to him sleeping in your room, mattress on the floor if you don’t want to bed share?

You getting more sleep may help you cope better.

This was another one of our solutions. At that age and for my child, it was start the night in her bed and stay there for at least a couple of hours. She didn’t have to sleep. She could read or play with quiet toys. She had to try to rest. If it failed and she wanted to be near us, she could come sleep on the floor bed. If we were already asleep, most nights she just managed to move herself.

true nightmares or things like that, mom cuddles and bed-sharing were still available just like with most families. This was just to deal with the nightly issue of not wanting to sleep alone.

That sounds incredibly exhausting, especially when you’re dealing with meltdowns and little sleep. The fact that he’s worse with you doesn’t mean you’re doing something wrong. You’re clearly trying very hard, and it’s okay to admit that you need more support too.

Why are you on a waitlist for medication?

Dc2 has ASD and has missed most of this term of school (in Australia) and I realised we all recognise the burnout masking causes, but not the burnout from parenting.

My dc is well-behaved, not hyper/loud/aggressive but the constant struggle to get them to school, eat, them needing constant reasurance about everything (food/smells/numbers/random things on the street - not going to make them sick), sleep alone, etc. We medicated last school holidays and just giving them time to adjust to it, feel the affects, but I've realised how much I needed a break too.

I'm seriously considering online schooling because l can see we'd all be happier.

Not sure what things are like in Australia but in the UK you get a diagnosis and then you join the back of the queue again to go through titration (with this provider anyway!)

How bizarre to have to wait for medication after being diagnosed. Hopefully the wait isn't too long. Our experience is different in that we weren't ready to medicate at that time, but once we decided it was best for dc, it was prescribed immediately.