Welcome to hell | Imamother

amother

OP ↓

Sun, Nov 17 2024, 6:23 pm

Somebody posted that on imamother recently when I wrote a post about my autistic toddler. I don’t even remember what the post was about. I was a bit taken aback to read that. But a few months later I feel like I’m in hell. He doesn’t sleep. He’s on no schedule. Every small thing that everyone takes for granted is a huge issue with him. Nothing is simple. How is it possible for us to manage? This is on top of so many years of other suffering that I’ve experienced. How much can one person take? How do parents of special needs kids manage? We’re barely functioning. Somehow my husband is managing much better than I am. But I feel like I’m living in hell.

amother

Lawngreen

Sun, Nov 17 2024, 7:10 pm

I totally relate. Have a 14 child with nodd, ADHD anxiety who makes my life hell. Plus a 6 yr old who will also prob have the same dx when I get them evaluated.
Parents with regular kids will never understand

amother

↑ OP ↓

Sun, Nov 17 2024, 8:12 pm

amother Lawngreen wrote:

Thanks for the validation. I guess it’s just you and me here 🫂

amother

DarkPurple

Sun, Nov 17 2024, 8:18 pm

I have a low functioning autistic teen. I find that the best coping method is to sing everything. Every time you want to yell, pick a tune and put your words to the tune. I have songs about tantrums, fecal smearing, all nighters, eloping, hair pulling, etc. You're using the same energy whether you yell or sing but singing feels better in the long run.
The lack of sleep is hard. I'm not denying that. BH ds got approved for an overnight aid when he was 13. If you have medicaid, you can request one. It makes a huge difference.
The other things that help are music and the park. We spend lots of time on the swings in the park, and whenever we're home, ds is listening to music.

amother

↑ OP ↓

Sun, Nov 17 2024, 8:20 pm

amother DarkPurple wrote:

I love this post. BH I’m not a yeller but I’m falling apart. You’re my role model.

amother

↑ Nemesia

Sun, Nov 17 2024, 8:39 pm

amother DarkPurple wrote:

You are a hero in my eyes. Really.

amother

Iris

Sun, Nov 17 2024, 9:12 pm

amother DarkPurple wrote:

I love this idea!!! will try with mine

amother

Whitewash

Sun, Nov 17 2024, 9:39 pm

I used to work with autistic kids and I can't understand how mothers cope and run a household while taking care of their special needs child. I'm in awe of you, it's probably the hardest job in the world. You are a hero!
Wishing you tons of strength and wisdom!

amother

PlumPink ↓

Mon, Nov 18 2024, 1:06 am

Hi I’m the one who wrote the welcome to hell that disgusted and horrified. Autism is a torturous thing to deal with. My nine year old is non verbal and high ability low performance.
It affects everything I do in every way. I’m sorry to hear that you relate. My only advice is apply for every variety of chesed and government program it won’t be enough but it’s a start. I can’t remember the last time I socialized or spent a night out or did any of a thousand things others consider normal. Iyh when mashiach comes we will understand. Until then we can look forward to the day

amother

↑ PlumPink

Mon, Nov 18 2024, 1:07 am

amother Nemesia wrote:

Some people can parent an autistic child with finesse. I'm not one of those people Crying

Autism is a spectrum NOBODY can do what I’m
Trying to do ..

Bnei Berak 10

Mon, Nov 18 2024, 4:39 am

I'll probably get burned on the stake for saying this but I understand why people sent their kids to institutions in the past. Some medical conditions are so severe that you cant expect one person or even two parents to deal with it.
There was a story on 60 minutes in Australia. A family with an autistic child. It was very severe. There was divorce and she was left with her autistic son to handle alone, father wasn't involved at all. She repeatedly did *everything* to get therapy and help from the authorities and health care. Kid got only a couple of hours of therapy each week. Everyone agreed he needed full time help but they didn't have the capacity or ability to fulfill this needs.
One day she snapped. She was charged with murder in court. Jury said she shouldn't go to jail. IMHO jury was right.

amother

cornflower

Mon, Nov 18 2024, 10:36 am

Hey op. I have no advice but maybe it will help for you to know you’re not alone, I’m going through this too. Shabbos was horrible I had no help with ds and he was out of control. I cried motzei shabbos because I have no other options of help left to explore and I can’t do this another day

amother

↑ OP

Mon, Nov 18 2024, 2:56 pm

amother cornflower wrote:

I really feel for you. By the time the weekend is over I’m barely functioning.

amother

Cerulean

Mon, Nov 18 2024, 3:03 pm

Wow. I have no words. I don’t have a child with ASD, but this sounds heart wrenching. I’ll have all in you in mind when I daven. May Hashem send you strength, serenity, help and a lot of money.

amother

Wandflower

Mon, Nov 18 2024, 3:09 pm

I don't know if you're looking for advice so feel free to ignore this if it's unhelpful but I know people who have been using different alternative medicine type of treatments to help their autistic children and have seen improvement in a lot of the symptoms.

One friend's child lost their asd diagnosis just by going off gluten. In hindsight he had hidden celiac and it was affecting his brain.

I know a few similar stories, one kid had lyme disease they never saw a tic, someone else I know was helped a ton with the gaps diet and vit b12 shots.

Major hugs from another mother of a special needs child. ❤️