Raising ASD child is draining the life out of me

[JuneBop]

Took my 2.5year old DS (has suspected ASD/SPD) out to a familiar cafe just as something to do with DP for partners day. DS had an epic meltdown that echoed around the whole room and caused many disgusted looks and stares. Ended up having to leave with DS and wonder around outside in the rain while DP finished his coffee before we swapped over and I went back in and sat on my own to finish my now cold tea.
Then DP rushed off early to see his DC from a previous relationship saying he wanted to actually be able to enjoy father's day.
So I'm now sat at home alone as usual just thinking about how miserable the rest of my life is going to be.
I can't do anything any more because DS doesn't permit it. I have to repeat the same routine every day. Go through the same meltdowns every day. Be hit and kicked and hurt every day. Be on my own every day as I can't have a social life when my DS can't go anywhere without having a meltdown.

Antidepressants don't work, have tired my different ones at different doses.
Couldn't attend the mindfulness course I was referred to as the creche there couldnt cope with DS while I was attending the course so had to leave and withdraw.

I just feel so low and alone. I don't want to carry on but I know I have to for my DS. The future seems so bleak.

The reality of school for the parents of children with challenging behaviour is often not as relaxing as that sounds

It is once you get the right school @reefedsail. I speak from experience.

Have to say life with my dd is getting worse as she gets older. She was a difficult toddler, but at least most people made allowances for that.

Now she's older her punches really hurt. She's given me black eyes and nose bleeds.

School is a constant cause of tension and anxiety for her. We have moved her school and it is better, but still not great. If we could afford to home school her I'm sure she'd be much better. But we can't and I don't want to.

It is so difficult to get an ehcp if your child masks in school and most of the difficult behaviour is at home. And then the special schools are so limited and not really at her academic level.

We’ve also had to stop going out for meals unless it’s fast food or a place with play area. Waiting for food with no distractions leads to meltdown.

The lack of support and understanding does make me feel more lonely. Few people get it. Support groups here are mostly on during the day (I work ft), and the one on a night is a fair distance away and tbh after working 8-4 then dealing with DS and his meltdown/homework refusal frankly I have nothing left with which to pull myself together and get out to a group and meet new people.

I’m having my cup of tea before I get the torch out and go cut his nails while he’s asleep. The OT said we need to do it while he’s awake - he has SPD - but getting punched in the face is not top of my list of fun things to do!

I am sorry things are so difficult for you at the moment.

The nursery can apply for top up funding. And could help you start to apply for an EHCP if necessary. Have the nursery contacted the area SENCO for advice?

Could you get in touch with home start? Even if it's just so you have another adult to talk to for a bit.
If you haven't already you could also apply to family fund if you are eligible.

I’ve been where you are, DD is 12 now, but when she was younger she was a fucking nightmare! Nursery used to phone me at work to come and get her because they couldn’t cope, then school wanted to expel her. She didn’t speak, the meltdowns were horrific, I was always covered in scratches, bruises and bite marks. She slept for 20 minutes on a good night, I was a fucking zombie at work.
The thing that saved her (and my sanity) was a change in diet. I put her on the GAPS diet and started giving her probiotics and chlorella supplements. Think she had L-glutamine too.
Anyway, long story short, within a month she was having full conversations, discharged from speech therapy and won star of the week at school. She even stayed in mainstream school. Now my biggest issue is teenage strops. Worth a try.

Tuxedocats. Hoping you're OK

^ God I hate responses like this. I received similar when I posted a thread on the SN boards and it broke my heart. No one ever takes their ASD kid out looking for a meltdown. Some days you could go to a cafe and have a great, calm time. The next day it could be a shit storm. I appreciate your post was probably well intended but phrases like that are so unhelpful.

Yeah but probably at quiet times. I bet it was extra busy on fathers day. It is a bit hit and miss whether it will be ok, and it turns out everyone got upset that it was a miss, didnt have a plan b or a strategy. Mine are 18, 12 and 11 now, and there are many places I couldnt take them at that age, and as they get older I still wouldnt go to some places, or I might take them one at a time.
Very kindly, you have to sometimes let go of the fantasy family times, and still create good times according to the family you have. Not the family you thought you were going to have. We expect a lot from our little aspie kids because of neurotypical parent fantasies, and as hard as it can be sometimes to get used to needs that are a bit different or a bit more challenging, we still need to do it as they are relying on us. It doesnt actually have to be shit

and by that, I dont mean that its not understandable that its upsetting. It is hard to not be able to do normal and traditional family outings. We all go through it, and I think its especially hard on mothers. We are under such a lot of pressure to present to the world a perfectly behaved child, and its even worse when the father gets shitty about it, as if hes some sort of a victim of it, rather than part of the family that is what it is, and its up to you, me, everyone to find the joy in what youve got and make it work somehow. What other choice do you have??

I’ve discovered with DS2 that some days yes he will be ok in a cafe for example. Then we could go back again another day, similar time, similar crowd there and he can’t cope at all. Sometimes it’s because he’s tired and his coping level is way down. Sometimes it’s because the label on his pants is bothering him and he can’t cope with that. Sometimes I have no bloody idea.
I agree with branleuse in that you do have to let go of that fantasy of being able to do all this stuff, and do what your family can cope with. I’ve had a hard time accepting this - I see friends with similar ages kids going all over and doing the stuff I want to do with our family but it really isn’t possible. I’ve grieved for that family fantasy, and now I’m in that mindset of doing what he can cope with, when he can cope with it. DH hasn’t let go of that yet and I see that’s why he finds it hard.

On mother’s day this year we decided to go out for breakfast instead. Got to the place for opening time at 8.30, there were about 3 people there, plus they had a play area and he had a great time. Not a hope of him coping with lunch when it’ll be rammed. So we’ve worked out we can still do some stuff as a family, just differently.

I should add we are still learning, and DS has had many meltdowns in public and will likely continue to have many more. I find the judginess of others hard, and have to tell myself to think stuff them, they’re not living my life. Everyone should have a bit more compassion and understanding about what goes on in other people’s lives, and no it’s not fun for us either when our kids have a meltdown. At least they get to go home and forget about it.

in a way, i found meltdowns a bit easier as he got older and it was clear there were special needs rather than just being bratty.
You also have to really learn to not give a fuck what the other muggles think.
I do sometimes tell people theyre autistic. Sometimes that helps. Sometimes it doesnt. Some people will always be judgemental pricks any time a child farts wrong, but you and your child have every right to a place in this world

I so feel for your situation. My youngest is diagnosed asc and I can honestly say there are times when I just want to get off the roller-coaster. My unhelpful ex the day we got the diagnosis "needed to go talk to his mum". Cheers for the support, I'll just cope on my own as usual then🙈. You must find yourself some respite care. You can apply for dla even without a diagnosis and that money is helpful towards all sorts of extra help including extra nursery time. Please don't beat yourself up for feeling resentful, it's normal to feel a sense of injustice. Sending hugs💐

I'm so fed up of being physically assaulted morning and evening. And as she gets older and stronger it hurts more.

My sister has a son who has autism and blindness. When he was a toddler she could not cope anymore ( she wasn't afraid to say that). They found for the son a place in family type children's home, where there were four other kids with various problems. He grew up there and once in a while spent weekends at her parents. I think the place could respond to his needs better and offer therapies. He is 18 next year and won't be able to live alone but in supported housing. My sister went to have two other nt children and has been living rather normal life.

The physical attacks...God, I really feel for those of you dealing with this.

My DS (ASC) used to really go for me when he was having a meltdown. I’d be covered in bruises and find myself making excuses about them to people like a domestic abuse victim.

He stopped attacking me when was about 11 and got as tall as me, which at least shows he does have some sort of self control. And that kind of violent meltdown has decreased.

However at 14 (and tall and well built), when he does have the occasional meltdown it’s so dangerous. And now he turns his frustrations on to his dad. It’s awful when it happens, as it’s basically two man sized people and it’s increasingly difficult for my DH to safely restrain him. We’ve had the police out on numerous occasions when the situation has become dangerous (they’ve always been lovely btw, but inevitably make a referral to SS which doesn’t go anywhere because we are a ‘nice’ family and don’t meet any thresholds, even with a younger child in the house).

It’s terribly hard.

Oh, yes, Crone, we get nowhere, too, because we don't meet thresholds. I'm going abroad with him and our older child next week to access better treatment for him. I hate to have to leave the UK, but it might be necessary because they're just really far behind on treatments and support for ASD and mental health conditions IME.

My sister is social worker herself so she knew how to get the help she wanted. She also got our mum sectioned when she had menopause related psychosis.

Good luck to her with getting all that help when he turns 18 after 9 years of Tory government, ban.

OP my son was exactly the same at that age, he was utterly horrific. Snarling monster who was all teeth and fingernails.
We were extremely lucky that there is a developmental nursery in our town who did wonders.
His issue was a mixture of frustration at not being able to communicate and sensory issues. For a really long time he couldn't bear certain noises or load environments, we'd have ear defenders on him or kiddie headphones with music playing to drown out the world a bit.
His biggest improvements came about once he'd started in melatonin to help him sleep and intensive speech therapy.
He's now 15 and still needs 1:1 care but he's a lot calmer than he was as a toddler. He loves music and the little boy who hates noise now plays drums, guitar and likes going to metal gigs with us!
I'm in Scotland so it could be different but you just need to have a child with extra needs to get help from social work here, not necessarily a diagnosis.
Sorry for the ramble xx