In the decade or so that my wife and I have been special needs parents, we have never had respite care. People ask me about it all the time and want to know why we don’t have it. Well, it’s complicated but I want to explain probably the biggest reason we don’t.
Most people probably think that we would kill for respite care. The truth is that while we would benefit from respite, it’s just not that simple, at least for us.
There’s something that you need to understand about being a special needs parent. Please understand that I mean you in general. I know many of you out there understand this. 🙂
We looked into respite many years ago, when Gavin was having upwards of 6 or 7 huge meltdowns per day. Yes, I said per day.
The problem that we found was that no one was qualified to deal with a child like Gavin. What we were offered was deemed unwise by all of the doctors and specialists involved. It was a situation that no one was comfortable with.
Since then, there have been funding issues with DD (previously MRDD). Gavin lost his waiver and we lost contact with his SSA rep. To be honest, things have never slowed down enough to really revisit that. It would take some time and energy and truthfully, we have had bigger priorities, especially in the health department with Gavin and Emmett.
One of the things that is most difficult about respite, at least for me is that, I have time trust the person I’m turning my child over to. That’s not easy when you’re dealing with a stranger. This is especially true in an industry with such high turnover. It’s often like a revolving door because people burn out so quickly.
The only way that I would personally benefit from respite is if I truly trusted the person involved. If I spend the entire time Gavin is gone, worrying about his safety, there’s no break.
Does that make sense?
Kids like Gavin make perfect victims because they will never be able to say what happened to them. We know that Gavin’s biological father and paternal grandmother sexually abused Gavin but Gavin never said anything and if he was asked about it today, he wouldn’t know what you were talking about.
Thankfully, we do have our parents. Lizze’s parents take at least one of the boys almost every weekend. That helps because we trust them and know they only do what’s in Gavin’s best interest. My parents watch the boys for is whenever we have appointments to go to. One thing that has always bothered me is that I’m the oldest of 6 kids but my siblings aren’t very involved in my kids lives, which really makes me sad. How great would it be to have 5 more people added to our support system.
Even still, we are never without at least one or two our kids. On the rarest of occasions and I mean like once or twice a year, maybe, we’ll have a night to ourselves. Typically, as soon as the boys are gone, we go to sleep. We’ve learned to just sorta muscle through it. Not always the best thing but it is what it is.
Where I live, there is little in the way of help for children with #Autism, let alone the parents of children with #Autism. I suppose it’s kinda ironic. As vocal and involved as I am, there is still not much in my own home town. That’s probably something I should work on.
Before I stay to far away from the topic I just want to help people understand that, at least speaking for myself, as much as I need the break, I can’t send any of my kids away with a stranger. Since we have three boys on the spectrum, bringing someone into the house has proven to be much to disruptive in the past. So much so that it really defeated the purpose.
I would love to have respite but it needs to be something that I’m comfortable with. Perhaps I sound petty but all I know is that turning my special needs child over to someone I don’t know very well is much easier said than done.