OT- Mom "Caretaker" stress

[PatMcDuck]

I just had another last minute cancellation of a "sitter" for DS, age 21. I am away overnight with DD, to see another specialist, because she has her own health issues. So at 10 pm, from a few hundred miles away, I had to make multiple phone calls to try and get coverage. (he has no school this week, makes it tougher).

DS is non-verbal, Down Syndrome and Autism, age 21. I get so tired and weary of making sure someone is with him 24/7. Obviously it is mostly me, who is with him, and he is in his last year of school, so that helps. But he finishes school in June, and I will have to try and find a program for him after that, but it will not be 5 days a week like now. And I do NOT work FT, I work PT nights, so he is with DH in the evening.

I love him of course, I am just so weary of figuring out his care 24/7....... I think is is harder now because his siblings are getting too busy to help, since they now work FT themselves.

No idea why I am posting this here, just thought some of you would understand.......

 

[krisnme]

I Do understand! I am a single parent to an autistic 19yo DS who also has CP. I have very little support system for babysitting and had to leave my overnight job as an EMT untill I can figure out night sitting for him. I have no other kids to help me, and my Sister does what she can but has her own kids to worry about. right now our income is from me watching her kids so I can keep DS with me. He was homeschooled from 8th grade and is now taking online classes from the community college. Hope next year he can go to classes on campus just to give me time to go back to working daytime. My Mom used to help me but she is now quite ill and needs my help a lot. It is HARD! you need to vent! and don't think you will be judged. anyone with a disabled child will understand that the stress can overwhelm sometimes. Wish I lived closer to you we could get together. Don't forget to breathe, sometimes its the only thing you can do. One of the nicest things anyone ever said to me was "God must think you are a wonderful mother, to give you one of his most special angels to take care of". *hugs*

 

[kandb]

Sorry to hear about your stress with your son. My brother has williams syndrome and still lives with my mom. My mom is 75 and my brother is 50, so I know how hard it is to have a family member who needs care 24/7. My mom has an aide that comes in 6 days a week and really helps out with my brother. My brother goes to a workshop during the day and goes on outings through spectrum during the week/weekends. My mother also puts him in a group home for a few weeks out of the year, so she can go away. My mom and brother live in NJ as well, Bergen County. Do you have a case worker for your son. There is help, so please take advantage, so you can get a break. God Bless, Linda