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Wednesday, October 26, 2011

Respite

In the special needs world you maneuver much of the system alone. From the beginning I found it a game to research all I could about help and programs in our area for our strange new circumstances. Although assigned a service case manager at some point in our journey, I quickly realized it was up to us to find out what was out there. I also discovered that the best place to get information from was often the other parents of special needs kids. Parents who had lived the system and or this crazy life longer than Mark and I had. So I started going to support groups, special needs kids programs, connecting with other Mom's and asking a lot of questions. One of the things we found was overnight respite. We had in home respite, but overnight was different. Teale would go to a home that was specifically for children with special needs and spend a night or nights there. I personally look at it as a band aid for a huge gash. We at the time of applying for out of home respite were struggling badly with Teale's behaviors and her all consuming ways. We had a new baby, Gwenn and a young son, Beau who also needed our love and attention. Those early months with Gwenn were the toughest, Teale was unpredictable and needed to be watched at all times. Gwenn needed our protection and then there was Beau, eight years old and active. I'm not sure how we survived those months and years when Gwenn was very small and vulnerable, but somehow we did. Gwenn never got severely hurt by Teale, thank goodness! Sure there were scuffles, but Mark and I were vigilant in our watching and protecting! Teale was like a large toddler, whatever was hers, was hers. Gwenn was a typical toddler, exploring her environment, she may pick up something of Teale's and all hell broke lose. Those were tough days, but as Gwenn grew, she came to understand "Teale's ways" and she has adjusted, as have all of us! So when overnight respite came to our attention, we researched it, applied, visited and eventually tried it out. There is an overwhelming unspoken truth among special needs families though. We have too much on our plates, but often we also have a very tough time letting go. To have strangers care for my multi handicapped, mentally ill, very complicated 4 year old was huge leap for me. She was still just a little girl the first time we sent her to respite. We looked at two homes in our area, but went with the Christian agency because it "felt" better to Mark and I. There have been bumps in the road over the many years Teale has done overnight respite. But we have worked through much and at this point it is just part of our lives. Like I said earlier though, it is like a band aid over a gash. It gives us a much needed breather, time to enjoy each other and get things done, but it does not solve the everyday struggles we face. It is the states way of trying to help and acknowledge that our lives are difficult. I believe the state hopes the breaks are enough to have families keep their children in their homes, therefore in the long run, saving money. Overnight respite is free for my family, but there is a limit and the need in the area is far higher than the space for children. Teale may go to overnight respite as often as every six weeks for two nights or it may be as infrequent as one time every six months. You can request times if you have a special event, but for the most part, we wait until Teale is invited. It still is not "natural" for Mark or I, it hurts to send Teale to respite, it hurts to need it. We do it because we are here for the long haul with Teale and the breaks do us good, but the worry doesn't go away. It is difficult to pack her, wondering what she will miss from home and if I am sending "enough" to keep her happy. It is a challenge to get the medicines right, the orders from her doctors set, as Teale's medicine bottles often do not say what she is actually on. Her doses change frequently, we are in constant flux, talking to her doctors or texting them to adjust this or that. Teale stresses over going to respite, she fears being abandoned, it is a constant concern for her. The anxiety for days before she goes can be so bad it makes me wonder if the couple days "off" are worth it? Then there is the respite backlash, her behavior can be awry when she comes home, like she is mad at us for sending her, but doesn't know how to tell us that with words so she lashes out. But even with the many stresses, I am convinced the good outweighs the bad. Our other two kids get time with us and we get time with each other. We sleep through the night and even wake late, the quiet in the house is eerie but also soothing to my often frazzled soul. Teale meets people at respite, she experiences new activities and often has much  fun. They treat her well and I believe she may even enjoy the break from us also! Whenever one of us is gone overnight, whether it be Gwenn to a sleepover or Mark on business, we call it respite. It is our way of helping Teale not feel like just she gets "sent away." I also always pack a respite gift in her suitcase, something new to look forward to when she is at respite. Teale just went last weekend for two nights and while she was away we enjoyed some time together. Respite isn't perfect, it isn't the answer to our constant stress, but it renews us to keep on, keeping on.

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