Respite
Parents of special needs children, whether it be autism, down syndrome, fetal alcohol syndrome, ADHD, or seizure disorders need respite. We need some time away from our children to regain our own selves because we can’t be expected to be super parents all of the time.
Children with special needs often act poorly, acting negatively most often to parents because they are the ones whom they trust the most. I know that AJ reveals his true crabby self to me the most and reacts to me the most. I am the one he takes his day out on, his stress out on, and his frustrations out on. And, it takes its toll on me.
So, how do I manage? Well, to be honest, some days it is very hard because most days I don’t get respite. Sure, I get stressed out, I get tired, and I get crabby. But, I do have to make sure that I take just a little time for myself.
We have applied for respite with our local respite provider and we call upon my parents quite a bit to give us some time to get errands completed. We also sign AJ up for programs at our local Special Needs Recreation Center, which is a fabulous center to have. And, one of the best things I have done is join a local support group and we meet for playdates about every other week. AJ loves it, I get time to socialize, and he is plum tired when he comes home.
Support Groups
Meetups
Parent to Parent Program
MOPS
National Respite Locator
Respite is temporary relief during emergency situations for families who are caring for those with disabilities, chronic, or terminal illnesses. However, because some disabilities are not temporary, respite may be a lifetime benefit for some families.
May 5th, 2008 at 10:48 am
My husband (who is in the middle of Dx testing for Asperger’s, but has been Dx’d with ADHD) just had a similar meltdown yesterday while we were out at dinner with his family.
I think that it was just too much input (lots of people talking at the same time, plus he was driving) and his brain went haywire, but it can be so frustrating and I feel bad to admit this, embarassing. I try to be understanding, but it is hard to teach an adult about what is/is not acceptable behavior.
May 12th, 2008 at 9:26 pm
We finally got some relief this year. Our public school has a pre-k program for low-income and special needs children. Our time away from one another has really helped our relationship, but like your child, my daughter would “let it all out” when she got home. It was frustrating because I wanted our time together to be special and loving and instead I was spending a lot of it dealing with meltdowns. Thankfully, her occupational therapy has helped tremendously and the meltdowns are becoming less frequent. It has also been frustrating because people (mainly my child’s teachers) don’t seem to understand why she is a good child at school and then why she begins to act up when I show up. Being a teacher, I know that it is normal for a child to hold things in around other people. It is just frustrating. It’s actually nice to read an article by someone who understands and “gets it”.
May 12th, 2008 at 10:44 pm
Karen,
when AJ finally when to preschool it was like a huge sigh of relief for me. Next year he will go to all day kindergarten and I don’t know what I will do with all that time (until the baby comes home, of course).
Parents like us need time away to be better parents because having them with us all day is more frustrating than not. Dealing with those meltdowns is not something I want to do all day either and I know how it feels. He is happier socializing and I am happier being able to get housework completed in a timely manner. That way I can really focus on him when he gets home.
Totally understand…:)