Tuesday, September 4, 2012

Respite Care

I haven’t blogged in awhile… quick update on us… school started a couple weeks ago.. everyone is happy in their new classes and are off to a great start to the year. 

Adoption – we had our VISA appointment about a week ago..went very well.  Now we are waiting for the Article 5 letter to be translated and authenticated and it will be submitted to the MOJ next week.  At that point, we will wait for a signature from the Minister and then we’ll get submitted to court for a court date.  Then about a month after our court date, we’ll travel to bring our two new additions home!  I can’t wait to get them here!!  Ahhh I miss them so much!!!!

OK, on to the topic of the day!  I have had a lot of people ask me recently about respite care for their children.  Some agree that respite care is great and very needed…others disagree with respite care and can’t imagine going anywhere without one or more of your children. 

…today I am going to put it out there.. my feelings on respite care. 

We live in Iowa… where we have some of the best services for people with special needs.  We receive respite care for both Josie and Jacob.  We will add Landon and Evelyn to that plan when we get them home.  We receive respite through the I.D Waiver.  The Intellectual Disabilities Waiver (used to be called the M.R Waiver and yes it is what you think it is).  This is a program in Iowa that if your child qualifies for, you can have services for your child while it waives the income of the family.  With this waiver, we get respite, supported community living and medicaid (for us its supplemental to our private insurance) along with a laundry list of other services that our kids aren’t quite old enough for yet.  The three listed above are the ones that we use for now. 

We have quite a few hours that we can use of respite per month and we use every single hour.  Sometimes we use it so Joe and I are able to have a date night once or twice a month… sometimes so I can do things if Joe is working or vice versa.  There are other times that we use it for Josie and Jake together so we can do something with Katie and Owen alone.  We have used it individually for Josie and Jake so that the rest of us could do something that might not interest the other one. 

For instance this past weekend, our respite worker came to our home, to watch the kids while Joe and I went out for a bit.. then when we came home, she took Jake home with her and he spent the night there.  The next morning we took the older kids to a tiny amusement park near us for mini-golf, go-carts and a bounce pillow.  Then we went to lunch sans Jake.

I know some of you are thinking ….. WHY not take Jake with you??  I am going to be perfectly honest here.  We love Jake, he is our son… he is definitely part of our world and we love to take him with us to do mostly everything, but he is a lot of work at times.  He is 5, he’s mentally like a 6-12 month old and he is the size of a 2 year old.  He doesn’t walk on his own, he doesn’t feed himself (at least not at a restaurant).  When he’s overstimulated, he pulls hair and head butts.  He needs a stroller or to be held wherever we go.  Knowing all of this, we KNEW that he would not enjoy or get anything out of watching us do this stuff.  We would have pushed him in the stroller the entire day and he would have been overstimulated and too hot to be happy at all. 

We use respite and I think it’s the greatest service that we have for the kids.  Some families use respite for a few hours here and there, others use it to have a little vacation from the trials and tribulations that are their household.  We all need a break… we have to have a break and there is nothing wrong.. in my opinion.. with using respite.  It makes me a better mother.. to have time away from my kids…whether that be an hour or two days or a week. 

I would pray that those of you who don’t believe in respite, to please not judge those of us that use it….until you walk a day in our shoes at our homes, you can’t know.  I need respite.. I love respite.. I will continue to use respite and I will suggest it to anyone that asks me.  What is your opinion on respite?  I would like to hear it!!!


Mommy to those Special Ks said...

Amen!!! You are so blessed to live in an area with great resources available! I bet Josie and Jake have a great time with their respite care worker while you are getting that much needed time to recharge or focus on Katie and Owen. If the resource is there, use it, absolutely!! I wish we had stuff like that here!

Mindy said...

:) I actually work for the department that offers those services (though in a different state) - so I completely "get" the need - and you know respite care or other services are often the differences from a family being able to support someone with a DD or not.

Christina said...

Thanks for writing this!!! I'm on the other side: a "professional" who supports moms and dads, kids and adults with disabilities. I've been puzzled and sad to see some bloggers write that respite is impersonal, un-family or hurtful. It makes me sad because I know how much families need caring support. Nobody questions me when I seek babysitting for my neurotypical daughter! Sure, sometimes her grandparents watch her just for the love of it but sometimes we pay a sitter. And she's an "easy" kid, her sitter isn't going to handle special feeding techniques, or watch for med side effects, or keep her safe from banging her head. If she needed those things, we'd need an even more special caregiver. We would need to pay that person even more. That's just truth. I'm so glad when "my" families have despite a available and choose to use it as they do such a great job parenting their kids.

rosedel said...

I agree with Christina completely. I also think it is good for every child to realize that it is OK to be taken care of by a non-family person. In general it can be a broadening experience.

Barb said...

I live in Iowa too and now have three with special needs. With each adoption I have felt the need more and more for respite! Hard to believe someone is against it! We can't get anything done with the three little ones and our older two girls need time with us too. I am thankful for the ID waiver and services we get! Sorry not everyone understands that but that is their problem!

Anonymous said...

I live in AZ and have 3 kids, "A" is 16 and has Down syndrome, "C" is 13 and has Austim and "K" is my only girl and gifted . We have a WONDERFUL respite provider who has been with our family 6 years. She is completely committed and dedicated to our family. She comes ever afternoon and gets us thru the after school crazies ! Our daughter plays club softball and practices 3-4 days a week, respite stays home with the boys and keeps them on their schedule of dinner, showers and bed. My 16 year old still goes to bed at 7pm... he is a 12 hour sleeper and the high school bus comes early. On the weekends when we are at the ball fields 8-10 hours... everybody is with us, we spend family time,go to church as a family , and cheer our daughter on as a family. I DO LOVE respite !! Finding a perfect fit for your family takes time, but that "special" person is out there...