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.

I think your partner is making it worse. Means you cant actually concentrate on either your needs or your childs needs because hes too busy feeling sorry for himself and dropping in and out whenever he feels like it.
You and your boy could make a great little team. Sounds like your partner has written him off when hes barely a toddler

Yeah, my DD is a teenager and already gunning to leave home at 17. I'll see how long I can go on with the nightmare of life and then end it. DS won't even care, he's incapable of caring about anyone or anything besides himself. It's a heartbreaking condition for all involved, the worst thing ever. It's destroyed what was left of our pathetic family, left us with nothing and he doesn't give a shit.

Oh god OP, I hear you. I really do. I love DS (3.5) who has ASD and severe speech delay but it's FUCKING FUCKING FUCKING hard. I could cry most days. Often do.

I have an NT 8yo and I feel so bad for the impact it has on his life too, even though he dearly loves his little brother.

Public meltdowns are the worst. There's just nothing that can be done. I dread to think how I'm going to deal with it as he gets older.

Sending love to you OP and everyone else going through this.

Its bloody hard OP. I'm now sitting in our bathroom crying after a similar outing with ds2. Ds1 and DH wont even come out with us anymore, I'm usually stronger but today it has broken me. Feel free to feel sorry for yourself and have a sob. Big hugs to you.

my eldest was a nightmare at this age. Meltdowns over bloody everything. He did settle down as he got older though, and as a teenager, hes just brilliant. Just because theyre a nightmare toddler, doesnt mean it will be like that forever.
Ive got 3 with autism, and i am aspie myself. Ive done my fair share of crying, but with the right support, and not expecting an autistic child to act like a NT child, and changing your expectations and routines, and not listening to fuckwits who dont get it and want you to feel like a failure as a parent or that your child is just bad, youll be a lot happier x

That sounds really tough. Does he already get DLA? If not please apply - you don’t need a diagnosis as they assess on care needs, not condition. The money could help fund some extra support?

I have a 7 year old son with autism , adhd and ld . He is at specialist school . His behaviours are extremely challenging so I can relate to what yours saying . Your not on your own x

I hope you do become happier in time, OP. My son's just got worse as he's got older and I'm honestly so done in I'm going to end it in about 5 years, tops, just waiting for DD to fly the coop. She understands, she has completely sworn off having kids as she doesn't want to take the chance of having a nightmare kid like her brother. I hope things go better for you, OP.

We get DLA. Fund extra support. Hahaha. It goes to pay for his extreme use of soap, wipes and the washing machine. But do apply if you haven't.

I work with a little boy who id 6 and has autism. He's very limited verbally so communication is difficult, he is usually quite willing to try things and is capable of a few tasks but I am so thankful he is never violent. He rarely benefits from the days he spends at school but is collected everyday by his parents and my heart just bleeds for them, they are very young. I just think they must have such a difficult life. I think the 6.5 hrs he is at school must be so beneficial to them, and while i think sometimes he got nothing out of today's trip or whatever, im bloody sure his parents did. Im so sorry for all of you who have this every day xxxc

I feel you. We have a dd (6) with ASD and we are just a particularly challenging period. She's very difficult, violent meltdowns everyday and we don't really know why. We do all the things suggested.

She destroys visual timetables and timers - we've tried all sorts. I'm so fed up of being punched, bitten, kicked etc. I know she doesn't mean it, I know she is struggling, but I can't go on like this.

We have local groups, but they all meet up during the day and I work full time. When I ask for help or ideas the suggestions are always going part time or giving up work. Which we can't afford and I don't want to. I love work, it's my escape from the hell that is home!

I feel awful for our NT 9 Yr old having to experience this life. I often think about what would happen if we hadn't had her. Awful I know.

Not very nice for your DP to say he actually wants to enjoy farthers day!... You can't run away from problems what sort of msg does that send your son that his dad doesn't want to be with him?... Sounds like you just need more help and understanding you can ask your doc and they will put you in touch with relavent people or even your health visitor can. Did you run through what you where going to be doing with your son? as if it's just sprung on them a change in routine can cause a meltdown if you explain there's going to be a change say a day in advance and explain it like a story it's alot easier even on the way as well and what's expected when you get in there with say a treat of some sort for good behaviour.

Your son has got 2 parents, but your DP doesn't seem to be aware of that.

Taking a toddler with autism out to a busy cafe on fathers day was probably asking for trouble. Ive learned from experience. It has to be places where they can run around. An enclosed park with gates, maybe with a cafe adjoining might have worked better, or a soft play area with a cafe, or a picnic somewhere.
You have to work with what youve got.
As he gets older and you become more experienced, youll be able to work out what you can and cant get away with.

We get DLA. Fund extra support. Hahaha. It goes to pay for his extreme use of soap, wipes and the washing machine. But do apply if you haven't.

Well it might pay for a little extra childcare. And would mean extra child tax credits/uc if they are entitled. But yes, it’s not exactly a huge sum, I agree.

Have the nursery applied for an ehcp? They don’t need to wait for him to have a diagnosis.

The real problem is that there's a dearth of childcare for children with SN and if you could source it, it would cost a king's ransom.

Taking a toddler with autism out to a busy cafe on fathers day was probably asking for trouble

^ 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.

Big hugs. I have three kids (two have asd and one also has coeliac plus a myriad of other conditions). I’m utterly exhausted and barely recognise the person I am now compared to the one of 10 years ago 😕

I’m so sorry you’ve had a bad day.

I have a 10 year old DSD with ASD and severe developmental delays, she’s around 2 developmentally and other health conditions and have been in a situation like yours today many times. We have all but given up on restaurants and coffee etc. Now we can’t go to soft play as DSD is too big and rough with the other children.

I don’t know what to suggest other than a hug. I have been hit repeatedly today trying to protect my baby from harm and am having a really crap day too.

I understand

It is a shame it isn't easier for parents of SEN children to get together for moral support. No one understands your situation more clearly than other carers in the same situation. No one. Even the good grandparents (ours are total shite) and friends. They get to walk away to their easy/easier lives at the end of the day.

We lost a baby (MMC) when our autistic Dd was 6. I think it was probably a good thing as I would never have coped with her and a baby, isn't that awful to say? genuine huge hugs to every one of you xxx

I feel really robbed and fucked over. It was actually easier to deal with my older child's bloody cancer because it didn't make her into the violent, aggressive, controlling, demand-avoiding, unloving person my son is, and there was a chance for a cure with that (even though she didn't get it). This is forever. Forever. And he just gets worse and worse.

Thank you for your replies everyone. I feel a little bit better having had a rant about it and hearing that I'm not alone. I genuinely feel for everyone who is in the same boat. It's so so so hard and I wish that none of us or our DCs had to go through this.
Today was a bad day but all I can do is hope that tomorrow is better.

You're definitely not alone, OP. Glad you feel a bit better for a rant. I find MN can be so supportive when you just need to vent to others who get what it's like.

I wish we could all meet up and drink tea / gin and eat cake to drown our sorrows together.

Can I try and be positive. The toddler years are hard work for nt kids, if they have asd its toddler tantrums on steroids BUT they do lessen, you learn coping mechanisms, they go to school, they grow up and whilst they are still autistic they do get easier to parent. Ok the toddler years were a long time ago for me but they were crazy, I was going through diagnosis with dd with a newborn, but learning to talk (age 4) helped a huge amount. She's at university now! She still can tantrum, but generally she knows her own triggers and tea solves most things now. Hugs to you all but please remember it will get better

That last message made me think. Our Dd is now 11 and hormones are kicking in and it's like being back with her as a toddler-but worse because she's big and could probably kill her siblings. I'm genuinely wondering and am concerned about her when periods start etc. I'm not intending to hijack the thread, it's just so great to hear so many voices of parents driven to the end of their tethers by ASD. It's good to not be alone.