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My son is exhausting

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Dolphinsbaby
My 3 little guys!

Member since 12/10

2943 total posts

Name:

My son is exhausting

My youngest has autism and he is 5. Well today the kids are off and I am home with all 3, but man he wears me out. I have learned to let many things go (for example he bounces on everything- yes we have a trampoline but sometimes he bounces on the couch, whatever). Anyhow, this morning he got it in his head he wanted the damn front door mat and was putting it on his head dragging it all over the house. It’s dirty so I wouldn’t let him have it, took it away, meltdown, tried to distract him, meltdown. This went on for an hour. I had to chuck the mat outside the back door when he wasn’t looking. Who knows why he wanted it today? Never done that before. I am exhausted and it’s only 11:30. This is one of a million examples. Thanks for letting me vent.

Posted 6/15/18 11:33 AM
 

Domino
Always My Miracle

Member since 9/05

9922 total posts

Name:

Re: My son is exhausting

Vent away. My son has ADHD and even with his meds it is constant movement and impulsivity. Chat Icon Chat Icon Chat Icon

Posted 6/15/18 2:00 PM
 

jamnmore
LIF Adult

Member since 6/16

989 total posts

Name:

Re: My son is exhausting

Posted by Dolphinsbaby

My youngest has autism and he is 5. Well today the kids are off and I am home with all 3, but man he wears me out. I have learned to let many things go (for example he bounces on everything- yes we have a trampoline but sometimes he bounces on the couch, whatever). Anyhow, this morning he got it in his head he wanted the damn front door mat and was putting it on his head dragging it all over the house. It’s dirty so I wouldn’t let him have it, took it away, meltdown, tried to distract him, meltdown. This went on for an hour. I had to chuck the mat outside the back door when he wasn’t looking. Who knows why he wanted it today? Never done that before. I am exhausted and it’s only 11:30. This is one of a million examples. Thanks for letting me vent.



The other day my son had what I call a squirrel day. Every 10 seconds he was off to another topic. And this went on for 6 hours. I feel your pain.

Posted 6/15/18 3:06 PM
 

Dolphinsbaby
My 3 little guys!

Member since 12/10

2943 total posts

Name:

Re: My son is exhausting

And it continues. The thing we keep our mail in, he has pulled it and thrown it on the floor for the 4th time today and almost broke it. I had to hide it when he wasn’t looking. I had a breakdown and just started crying. My sister bought it for me when our mom died so its very sentimental. Sometimes I feel like a prisoner in my own home. Things hidden. Locked away. Sometimes I forgot where we hid stuff till we find it months later. Today is just a super tough day. He was making so much progress haven’t had a day like this in a bit so when it happens stings even more.??

Posted 6/15/18 4:53 PM
 

iluvmynutty
Mom to E&M

Member since 12/08

1762 total posts

Name:
D

Re: My son is exhausting

Can you get Respite? I think that is through OPWDD.

Posted 6/15/18 6:06 PM
 

Dolphinsbaby
My 3 little guys!

Member since 12/10

2943 total posts

Name:

Re: My son is exhausting

Thanks. We are in the process of applying with OPWDD and wow is it a crazy long process. When DH came home, I ran out to get my nails done and felt like a new person when I came home so guess I needed to hit the reset button on me. LOL. Some days are great days but man the tough ones are TOUGH. Thanks for listening.

Posted 6/17/18 7:44 AM
 

lightblue
LIF Adult

Member since 1/17

2249 total posts

Name:

Re: My son is exhausting

I definitely feel you. My son is on the severe end of the spectrum and his behaviors can take a toll on me. It is also hard because my DH sleeps during the day so on weekends I have to try to get him out of the house but its hard to do without help.

Whenever you do get OPWDD approval you can start applying to respite programs. Currently I send my son to a Sunday respite program that meets 2 Sundays a month, I look forward to those Sundays lol (although now they are on break for summer).

Posted 6/18/18 3:46 PM
 

Mmm777
LIF Infant

Member since 2/13

329 total posts

Name:

My son is exhausting

I think variety had a program, I used to send mine while we were in LI
You can reach out to the coordinator who is doing the paperwork and ask if there are other Centers who offer it, they may not need OPWDD
Typically JCC would be a good resource
Also any school ( private ) run for children with more severe needs
If you have a YWCA in the area , that too

I am at Westchester now, so I cannot think of anything else in LI..

You are not alone, though honestly it feels like that most days ..

I saw another teenager/ young adult yesterday, and he came running to us and kept saying he knew a language, ( I think maybe we resembled his family)
I was crying , my son will be the same , non verbal, behaviours, insomnia,some days are so difficult..

Message edited 6/19/2018 7:26:39 PM.

Posted 6/19/18 7:20 PM
 

Dolphinsbaby
My 3 little guys!

Member since 12/10

2943 total posts

Name:

Re: My son is exhausting

Thanks everyone. Just nice to hear from others who understand. We are in Queens. We actually were approved from OPWDD for him and just got an MSC (although I know it is changing over summer to care coordinators). Good to know about respite centers. I didn't know. Thought it was only offered at home, but honestly I would prefer to take him somewhere (to a program).

My MSC is literally brand new and knows nothing so it's very aggravating. I will at some point switch to self-direction since I feel like I'm doing everything myself anyway.Chat Icon

Posted 6/20/18 1:47 PM
 

lightblue
LIF Adult

Member since 1/17

2249 total posts

Name:

Re: My son is exhausting

Posted by Dolphinsbaby

Thanks everyone. Just nice to hear from others who understand. We are in Queens. We actually were approved from OPWDD for him and just got an MSC (although I know it is changing over summer to care coordinators). Good to know about respite centers. I didn't know. Thought it was only offered at home, but honestly I would prefer to take him somewhere (to a program).

My MSC is literally brand new and knows nothing so it's very aggravating. I will at some point switch to self-direction since I feel like I'm doing everything myself anyway.Chat Icon



That's great you were approved for Medicaid waiver! I tried applying for my son last year and we were denied. I am going to try again when I have to apply for permanent OPWDD eligibility when he's 7. I hear you get a lot with self direction but yes I hear it is a lot of work as well.

My son goes to the respite program at Variety (right now through family support services, bc thats all we are approved for) and we love it.

Posted 6/21/18 12:34 PM
 

LSP2005
Bunny kisses are so cute!

Member since 5/05

19453 total posts

Name:
L

Re: My son is exhausting

I am in NJ, but our JCC offers weekly respite care for parents of kids with autism. They have a one on one program with eight kids where you can work out or leave for two hours.

Posted 6/21/18 10:25 PM
 
 

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