When is this going to end

[Mum998]

Long one, but I don’t feel like I’ve got anyone else to talk to/compare etc,

I have 3 kids (1 being non verbal autistic).
I suffered with anxiety and panic attacks when I was 18 but kinda got over it myself as I didn’t like the effects I experienced on different types of anti depressants.
The last couple years I’ve been back and fourth with the doctors about medication due to the way I’ve been feeling etc since having my kids. I’ve spoke to family who basically tell me I made my bed, so lie in it. I do get help from my mum but she’s a busy woman with other grandkids who are dependent on her.
My children’s dad works long hours and night shifts so I’m alone quite a lot of the time (autistic child in SEN school and younger 2 in nursery couple days a week).
My autistic child is getting harder with age. The meltdowns, the control over everything in the house such as what’s on tv etc, I’ve tried being firm and not allowing it, I’ve tried doing what she wants, but then my other 2 children are bored, stuck doing the same thing (especially on weekends when we are housebound due to needing a second adult for my eldest as she’s 1-1 as soon as we leave the front door).
she doesn’t sleep, again, constantly back and fourth with the paediatrician about sleep medication etc. So when she doesn’t sleep, I don’t sleep as she trashes the house. We have locks on every single door which are locked at night apart from bedrooms as I’m pretty against locking my kids in at night.
i am at breaking point. I work 2 long days at work during their dad’s days off, this is the only time I genuinely feel happy. Adult conversation and feel like I’m almost having a break, even though it’s work.
I am miserable all the time, trying to put on a brave face so my kids don’t see how down I am is becoming harder and harder. I love my kids more than anything on this planet, but I feel defeated. Like I want to run away.
i don’t have much support from family as only my mum can have my autistic child as she’s the only one who knows her like me and her dad does. I find it hard to trust people to have her when she cannot talk. My marriage seems to be falling apart due to having no time for each other, constantly feeling tired and deflated from the days we’ve both had. I feel guilty every single day about my other 2 children missing out on things like park trips, soft play etc, but if I’m alone, we can’t go, if another adult comes, our time is limited there due to my eldest not like busy/loud environments. We have tried every SEN friendly activity under the sun and I feel like I just cannot balance my life and kids out.
i am dying to take my kids abroad, as my youngest is obsessed with planes, but again, I’d feel guilty going away without my eldest, but feel guilty having my other 2 miss out, especially as my middle child starts school this September and will probably hear stories from her friends about holidays and planes etc. We do UK holidays once a year but even that is painful, it’s not enjoyable and I’m counting down the days until we are home due to my eldest not adjusting to change very well (very dependent on having her bedroom for time on her own)
I guess I’m just looking for someone to tell me it’s my mental health which is making me feel this bad, or if this is just going to be my life (I don’t know anyone who’s autistic child is similar to mine to talk to about these things)

Have you had social care assessments? A carer’s assessment for you and an assessment via the children with disabilities team for DD? You could also look at your local short breaks offer.

Home Start may be able to support you too.

What medication has the paed tried to help with sleep?

Has DD had a home OT assessment? That could look at how to make the house better meet DD’s needs/safer. This could, in turn, make life easier for you. One example could be a safe space bed or similar.

What support, including therapies, is DD receiving via her EHCP? If there are things she needs that aren’t in there, improving the EHCP could result in lowering DD’s anxiety. For many, controlling behaviour stems from anxiety and/or unmet needs.

Some people find the books The Explosive Child and the Out of Sync Child helpful. Others find PDA techniques or NVR useful.

For your younger DC, some find your local young carers service helpful, especially as DC get older. Some find speaking to Sibs useful too.

Not sure how to work this, so hope this reply gets to you.
We haven’t had social care assessments, but have had OT come and assess the house, this was sept/oct last year, heard nothing back even with lots of chasing. Her paediatrician is going to be chasing them too after her appointment last week with him. She’s been on melatonin, we were told there is no other alternative due to her age? But have now been given a slow release melatonin to try instead. She doesn’t have anything apart from SALT coming out to school and working along side a lot of people in her school. I have started looking into rebound sessions locally for her to do out of school, but it’s finding someone to watch my other 2 as I cannot go anywhere alone with all 3! 2 years ago, I’d go anywhere, but she seems to of gotten quite bad after spending a year in mainstream school awaiting her place at her SEN school she started in sept. It’s almost like she’s a different child after being in mainstream for a year. I’m going to look into those books so thank you!

You can request social care assessments. On their website, Contact has model letters you can use.

If the OT is ignoring you, complain.

There are other alternatives to try to aid sleep. Request a referral to a sleep clinic,

If you think rebound therapy might help, would a trampoline at home help? You can get mini indoor ones if you don’t have a suitable garden.

DD needs more support. When is the annual review of her EHCP? She needs OT, including sensory integration OT. Rebound therapy is also something that could be in the EHCP.

I will definitely complain about OT if I haven’t heard by Friday after the paediatrician saying he’d chase it. We have her annual review on 29th January, so will be pushing for more things in place for her. She struggled with half terms/holidays so she’s settling back into school still, hopefully she mellows a bit once she’s back into routine, but then next thing you know, it’s half term again..
we got referred to the sleep clinic and they basically said we are doing well with what we are doing, keep it up. Again, it gets pushed onto the paediatrician! Hopefully this slow release melatonin will be good for her!
I will be contacting about the assessment tomorrow, thank you for that!