Life inside the ABA fishbowl. A family who has finally made the waiver's. A family who is sacrificing a second mortgage to get their precious child desperately needed therapy. A family who has a child in intensive therapy typically has therapists in their home or alongside of their child for 25-35 hours per week. Some families (like ours) hit the jackpot and have two kiddos receiving services at the same time. Anywhere from 50-70 hours per week (some overlapping) of therapy.
Frankly, there is no place to go. There are so few people who are walking through this daily grind that have someone who truly understands. Add to that equation the fact that we cannot just go on a play date. If it isn't built into the programming, we cannot leave. If respite isn't available, we may not leave. Shackled to the home, loving our kiddos, and completely alone with a house full of people. (I'm not even kidding, we had SIX therapists today for a home visit....)
Before you stop reading thinking this is a "Woe is me" post, it is not. I cannot put into words how grateful I/we are for the therapy our boys are receiving. In fact, today during our home visit, we talked about some of the life-altering changes we have seen in just under a year. Changes I honestly never thought possible-a haircut without tears. You have no idea. It's amazing, a gift, a day-by-day blessing we get to experience. But, it's difficult. Like, way harder than I ever thought I could ever put up with. let alone handle. These hard-working therapists walk alongside me during my everything-my ugliest, my failures in parenting, in my marriage, even me without make up. They see my dirty bathroom, my dirty dishes, my unswept floor. They see dirty diapers, unvacuumed floors, dirty and/or unfolded laundry, and unmade beds. Some of you are now wondering what it is I do, and why I don't clean. They may not see all this in one setting, but they see where I am pitifully behind on all I need to do. And, I have to be okay with it. As long as I am out of the shower (and dressed), and the kids are not walking around naked, I have to be okay with whatever else they see. For a (desired) perfectionist, this has been a big, nasty, difficult pill to swallow.
In the autism community, there is a LOT of blaming. A lot. People are passionate about what they believe, and if you dare to think otherwise, you will be proven wrong with one medical study or another. But, there seems (at least to me!) to be very few places to go ("go" being a loose term for a virtual connection) to just be supported. To "reach out" and "touch" someone who is there to just say they understand. So, I decided to try and start that place. I have been told that if you bring a problem to the table without a solution, you are just adding to the problem. Not desiring to do that, here I go...
https://www.facebook.com/groups/1593403414253254/
