What about respite care?

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.

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Michael

Hi I am a live in caregiver, and I my self find it hard to get respite for the lady I look after, I have a hard time just turning her over to a stranger as well, I have known her for over 10 years and she is more than just a client to me, she is my friend and yes she is a younger sister to me..
As for your situation, I was wondering the same thing some one else mentioned, see if u can find some one that can just come and hang out at the house with your family for little bit each day, let everyone get to know each other..

I also run an adult day care program, and some time I just go and hang at their house with everyone there, so that way we get to know one another a bit before the person actually takes part in my day program….It seems to work..

Maria Hall

I totally love love love Northeast Ohio Developmental…. they are in North Canton. Larry Powell runs the place and turnover is low. DD and Family Council recommended him to me for Jake. He treats his clients like family. I would trust him in a heartbeat. There are others in Canton area I would not trust for a hot second… (one place in Canton has high turnover and frankly most of the staff are not very well educated and I witnessed them treating their non verbal clients poorly so you are very right to be cautious. ) I like the place that has my son now (Christopher's House) but they are Akron area. Of course respite comes in so many different forms, and if parents are able, they are the best ones to do it, kids love their grandma's and grandpa's/ Dunno about your kid, but mine has never melted down with Grandma and always is a perfect angel for her.

Megan

Can you ask to have the respite provider just hang out with Gavin IN your home? That way, you can hear and see what's happening, but still have time to focus on some other things? Plus, it always helps to have an extra set of hands! I am not a respite provider but I provide in-home therapy and I can tell you I have really gotten to know the families I work with because i'm in their home so often. I would like to think they at least somewhat trust me! I don't know, just a suggestion.

Jane

I was a respite caregiver, and I truly understand what you are saying. I do not have any special needs children, but have friends that have them. I too would not want to leave my loved ones with someone I did not know. It takes time and patience to get to know someone well enough to trust with the one person you can trust. You don't have the time and that other person does not have the time for it. This is a no win situation. I know this doesn't fix the problem, but maybe give you a bit of how it feels on the respite caregiver's point of view. I do hope you find someone that can give you the relief that you need. God Bless

eachsecondmatters

I totally understand. I can't turn my daughter over to a stranger either. She, like your Gavin, cannot protect herself or tell me what is/has happened. Maybe God will bring something for you soon.

Leanna George

I totally hear you, we deal with it too. We do have the waiver, but we have a hard time getting qualified staffing. I'm surprised we haven't lost our waiver slot because of some of the lapses in staffing. Nearby, no one is qualified. Qualified people live too far away so the commute to them isn't worth it. My last staff was very incompetent and the only reason why I tolerated her so long is at least I had someone who could 'watch' Serenity so I could run to the grocery store alone.

Disability rights and advocates and the state want us to go to an institution free system, but until there are people able and willing to handle the worst of the worst, then I pray it doesn't happen. There are only 42 pediatric spots available in our state's treatment and habilitation center which also offers some therapeutic respite.

I am in desperate need of an extended break. Oh, I'm lucky, I get out of the house occasionally and even for an overnight, but I come home to twice the work of cleaning up behind my husband and the kids. I need Serenity to be out of the home so I can reclaim it from the disaster that it turns into when my life revolves around watching her 24/7. It is probably the 1 thing I miss about her not being in school 3 hours a day, at least then I COULD get some work done before she came home. Nowadays, come her bedtime, I am too worn out to do much.

Just gotta love being a parent of children with special needs. We wear WAY too many hats, but can't and don't trust just anyone to take one off of us.

Dearest_Nikky

I wish we lived closer. That is all.

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