guppy pic 3I had some time to think last night at the hotel, and these are my thoughts of Thankfulness for Easter Seals Greater Houston– having given my husband and I a “respitality” voucher (a donated nights stay at a hotel) thanks to the generosity of Marriott at George Bush Intercontinental.  I’m not sure how we were chosen, but I am so very thankful we were. We’ve had that respite voucher for quite a number of months… I’ve known it was sitting in my planner for a most desperate time when the stars would align for us to have childcare and be able to use it. My first thoughts about it, is that so often when I’m at the end of my rope, when I think I can’t face another seizure, another moment, I would think of that as my sort of lifeline. “Well, if I can just get through until relatives come to visit, we can use that “golden ticket” to get away. We planned to use it when Team Guppy 1.0 came. But then the other side of that “respite break” is that because we are so isolated, when they were here, we had such a good time getting to actually enjoy them and their company and their help – and because they were here we got to do little Kayak trips daily and get away — we were so enjoying that, which we have been craving just as much as respite, that I forgot all about that “golden ticket” in my planner. I was cleaning out my planner the other day and saw that respite voucher at the hotel and saw that it expired this weekend so I had to use it. We didn’t have anyone here to stay the night with Brandon, and Todd is going to see Matt for Thanksgiving in a couple weeks, so I booked the room as a chance to stock up on some sleep! 🙂guppy pic 1 It was wonderful — I did sleep. I planned to do so much reading and Bible study, and did some, but mostly, just slept. Most mornings I wake up tired because I’m always getting up for something — letting the dog out, checking Brandon, etc. But with nothing there to do, I could actually sleep, and I woke up early enough, and refreshed enough to have my free breakfast that came with the room, and to come back home and go to church with Todd and Brandon. It was just amazing what uninterrupted sleep can do. And I think what was part of the refreshing part — is that while at home, it’s not that the work is “hard” in the sense that it’s physically draining (well, aside from seizures) it’s that it is constant. It is a constant state of interruption. A constant state of having to do multiple things at once, while being constantly interrupted in all of them. In cooking, I’m not only cooking our food, but Brandon’s ketogenic diet food. While cooking two meals, it’s redirecting Brandon to not use hands in eating his snacks. It’s cooking, redirecting, and then stopping to clean spilled whatever. Stopping all that for the potty schedule routine. Then it’s the coming back and trying to pick up where you left off. In our eating, it’s constantly checking Brandon, if he wandered off, or if he’s in the tub to make sure no seizure, no drowning. It’s just the “constant” of having a severely affected highly energetic and mobile child who needs constant guppy pic 2supervision/redirection. I thought about whether I had “fun” getting away and it wasn’t really about that. Fun, to me, would have been going Kayaking with Todd. Hiking with him. Sitting on the beach with him. Yeah, the romantic part of having a hotel room with my hubby would have been fun — but what our “Life with Autism” steals the most, is that ability to go places and do things together. When we have an opportunity to have help with Brandon, we want to run 1,000 miles an hour with our hair on fire. Respite to us, is to have a place for Brandon to go, so that for a day we can do those things. Brandon needs a place to go, things to do, just as much as we do. But our life with autism and how he is affected by it makes that have to be two separate things for us. No way we would want to be in the middle of Offat’s Bayou with Brandon in a kayak having a seizure, or deciding he wants to get up, or OUT. LOL This respite opportunity was what my body needed – and I’m so thankful to Easter Seals and Marriott for giving that to me. It didn’t work out for both of us to benefit, but I am very thankful I could! Family members and friends of those living “Life with Autism” — consider giving them a voucher for hotel stay for a night. Just the chance for them to go sleep! If there is no childcare for both parents to attend, at least like us, one of us could! Offer to stay the night for them, or if that is too uncomfortable for the parents, offer to stay during the day so they can do do something together. It’s just such a great need. Churches, like the YMCA’s and other places do, if you know of those in your congregation that have a child with autism, allow use of your building for respite so the child can go somewhere and the parents can enjoy their house distraction and interruption free! Like this was for us, it’s not always going to be the perfect scenario – but we must do something – and I am so thankful that Easter Seals had that voucher for families to use. I am so thankful for Church of Champions having respite days at their church so we can have somewhere for Brandon to go while we do errands together or just enjoy our house in peace. I am so thankful for Graceview Baptist Church and other churches who offer such programs as well as Easter Seals Houston’s Family Day Out and Parent Night Out. Our kids need fun as much as parents need sleep! I know so many parents who would covet such a “Golden Ticket” to know they have when they feel they can’t go any longer without a break. Please, give to Easter Seals Greater Houston for the purpose of respite vouchers at hotels. These churches I mentioned, and others, donate to them specifically for their respite programs — to pay staff if they need to hire help, or to pay expenses or supplies. Or kids need places other than home or school to go to just as much as parents need a quiet room and a good nights sleep. These are the gifts that are needed for families this Christmas. And all year-long.

MG, Parent

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