Toddler with severe autism - I’m drowning

[ThisNewCat]

as above I have a 3 year old with quite severe autism / special needs. They are non verbal and can be very violent. When they are not in a meltdown they are gorgeous and just the absolute best company, but I have to admit 80% of our time is in meltdown, for example can’t have clothes on, can’t eat most textures, can’t stand any noise, obviously can’t talk or communicate, they can’t gesture (no pointing waving anything ever) and I am their prime caregiver 24 hours a day (lots of sleep issues), everything is a battle. I am so exhausted. They were assessed as having little to no understanding and obviously no outward communication through speech. We tried signing, this didn’t work. We just muddle through at the moment.

I am generally a positive person but I have to admit the last few months I am so depressed to the point I have felt like ending it all. I feel completely isolated, alone and so sad for the life my child will face ahead of them. I feel like this is somehow my fault?

i don’t even know what I want from posting here but honestly I feel like nobody is in the same boat. We go plenty of places and I look around seeing the children the same age just happily playing, chatting, connecting with their parents, siblings etc. we don’t have that.

this is my only child and we won’t be having any more. As awful as it sounds to admit I feel robbed of a ‘normal’ parenting experience as my life has turned upside down having to essentially be a 24 hour carer. I miss my life before this, I miss my job I miss my friends.

maybe I’m just hopeful someone can tell me it gets better?

we’ve been offered little to no help, and I have no idea what I’m supposed to do about schooling etc either. I feel like I knock on every single door but never get help. Maybe it’s my local area? I don’t know

i feel so alone.

Im aware this OP is nearly a year ago but Im very thankful to have come across it. Its a very similar situation to what has been happening with my son. And for myself I identify with how you feel; my husband and I have felt increasingly isolated and helpless. Day to day life is like being on a tightrope. Our son is 26 months old at present; from 12 months of age I suspected something was wrong. Over the last year every month gets more challenging. He was delayed in walking only started walking independently at 2. He doesn’t have many words yet : says “hi,” “bye” and “look.” His receptive language is very limited. He has constant meltdowns, which can last from 30 minutes to over an hour. And they are becoming more frequent. Usually daily. He will head bang, slap me or hit my face or pull my glasses off, head bang which is absolutely worrying as I am scared he will hurt himself. He can become triggered by anything. Is extremely fussy with food; if I present something he doesn’t want he will kick off and push it off his tray.

Like your child, my son is fixated by doors, cupboards and drawers. Even going to the supermarket he loves to watch the automatic doors open and close…. At one point we couldn’t even go to the supermarket as he would get so upset as soon as he lost visual of the doors he would scream and thrash around. Luckily at present we can go, as a long as I let him watch for a few minutes on arriving then I can go around with him in the trolley and get what I need. And he doesn’t get upset when we leave anymore.

We struggle to go for walks anymore in the pram as he only wants to go in certain directions (which is usually towards a supermarket ) and will get fiercely upset if we try to go different ways.

He enjoys car rides whilst listening to a certain playlist of music.

I think I get worried the most is where is this going? How will it continue to evolve?
Like the other week I bought a new tommee tippee free flow cup ( we already have a few and he wont drink out of anything else) in a new colour that he hadn’t had before and he just knocked it out of my hand when trying to give him a drink from it. He still wont look it and gets mad when I get it out. So I had to go back and buy another on in the same colour in the other two we have (purple or green). Its all these little things that mentally are very draining and overwhelming. I sometimes feel like Im one of those wind up toys jittering around with all this stress and worry. As soon as my son goes to bed Im out of action from sheer tiredness. Trying to keep in touch with family or anyone for that matter is feeling impossible. My husband and I feel so much the same, and we struggle to go anywhere as our son can get so upset. We even tried to attend a local charity ran event for kids with special needs that meets up every Saturday. However as soon as we pulled the car into the entrance there were some gates and to enter you has to press a buzzer, and there was a queue and the gates weren’t opening for whatever reason…. well my son freaked out is an understatement. He went beserk. We quickly had to reverse onto a busy road to get out of the situation. It was highly stressful; it was like we were escaping a ticking time bomb. So that was very disheartening and we just cant even make it to something like that .

Anyway Im rambling I apologise, I just wanted to acknowledge your post and say thank you for sharing. It does help knowing you are not on your own. Im sorry you have had a difficult time and its not a nice feeling. And I think the lack of support from services is a crime. It truly is and we have had a very similar experience, it feels like no one is interested or really cares to help our son or us. He is a beautiful little boy and we love him so much, we just want to get the help for him he deserves and is entitled to.