A tough decision

The Saturday respite for Janey has been a nice break off and on over the last few months.  I've been unsure about a few aspects of it, but Janey seemed to be enjoying it, and we certainly very much needed a little respite.  That's why it was very tough today deciding to not send her, after driving to the respite house, and deciding we mostly likely won't be sending her any more.

I don't want, in any way at all, to put down the respite.  They seem like great people, providing a service that is hugely valuable to many parents.  I am so glad they exist.  But right in their literature, it does say they can't guarantee a ratio of caregiver to child more than 3:1, although they said it's often 2:1.  In reality, Janey needs one to one care, or a environment like school where there are many people looking out for her.  She is not able to keep herself safe, she is prone to running away at times and she needs help with most all aspects of daily life.  The literature also said they can't serve kids with extreme behavioral problems or self-injurious behavior.  Janey at times has been known to have both.

This morning, when we got there, there were around 6-7 kids already there, and one woman as a supervisor for everyone. She was also checking people in.  Tony and I of course didn't leave Janey right then.  We didn't talk to each other, but we both were thinking that we needed to wait until more staff showed up (we were right on time, not early).  We waited about 20 minutes, and one more staff person did show up, but so did about 6 more kids.  Tony and I spoke briefly and decided we just couldn't leave Janey.  They were planning a trip to see Disney on Ice, and I couldn't really picture it working out for so few people to be watching that many high needs kids.  As we were leaving, one more person showed up, and when I told the woman checking people in that we were leaving, she said more people would be there.  So I am sure they would have their stated ratio before they left.  And truthfully, although I don't know the diagnosis of the other kids there, I think most of them would be fine with that ratio.  Several were in wheelchairs, several other pretty high-functioning seeming kids with Down Syndrome, and the other kids seemed fairly docile.  But Janey was already running around.  I couldn't quite picture what would happen if she ran off in public, and I couldn't feel sure that anyone would always have an eye on her, as is necessary.

The woman in charge was a little defensive when I told her we were leaving as we were concerned about the level of staffing for Janey.  I tried hard to make the point that I wasn't saying they were doing anything wrong, and that I wanted to make their day easier, as she seemed stressed.  I am going to write her a letter to further explain what I meant, and to thank her for the time Janey did spend there.  I know they rely on volunteers, and I know people run late.  The thing is with Janey---every second is important to have her watched.  The fact more people were coming later wouldn't help her if she decided to wander off when they weren't there, or if she melted down badly and started hurting herself.  The program wasn't right for her, and that is not the program's fault, or Janey's fault either.

I had some feelings from the start that the staffing levels were not high enough for Janey.  But I needed respite, beyond badly.  I decided to try to trust it would work.  And it might have still worked.  But today, leaving, I knew in my heart I was doing the right thing.  I am prone to second-guessing, to thinking I am wrong if anyone in the world disagrees with me, but today, I knew, and Tony knew, that we couldn't leave her.  And I think Janey is relieved.  We'll see if she cries tonight, like she did last week after going, but for now anyway, she had been extremely cheerful and happy.  I have also been happy, in thinking that NEVER ONCE did I feel even a second of worry when leaving Janey at school that she would not be well enough supervised.  I haven't appreciated that enough over the years!

I will still look for respite for Janey.  We still need it.  And I hope it's out there, someplace.  But for now, we have school, and we will make the weekends as fun for her and for us as we can.

Future visions

My leg is much better today, although still a bit of a mystery injury. I was able to drive Janey to and from summertime school, but by the time I got back from picking her up, the pain was hitting a bit. So I got an brief try of what it would be like to care for Janey while unable to move around well. In short, I really can't. I managed by letting her do most anything that wouldn't hurt her, which included eating bites of most of a box of donuts and throwing the rest on the floor, pouring herself some seltzer and getting much of it on the floor and then having me use the remote to change Netflix shows about every 2 minutes to keep her happy. The boys were both at their summer programs and Tony was at work, and I had about 2 hours to fill. She didn't try anything dangerous---there isn't much dangerous she can get at in the house, as we have childproofed pretty heavily---no burners on the stove, anything potentially harmful on high shelves or locked. She is easily able to open the bungle cords we have used to keep the fridge closed, though, so basically if I can't get to her, she will eat what she feels like eating---not dangerous, but odd, like ketchup, spaghetti sauce, mayonnaise, those stale breads that come with Chinese food, etc. Those are the reasons I keep on my toes always around her. I could see her at all times, and of course I would have pushed through the pain had she tried to do anything that could hurt her, but the house was a mess when Tony and the boys got home (not that it isn't always a mess, but more of one!)

And that is what triggered future visions. I'm not getting younger. I hope I'll be in good shape for many years to come, and I hope Janey gets easier. But what if she doesn't, and what if I get a worse injury? What if I got very sick? What if I, well, was no longer around? What happens to the kids that never grow up? How does it work? If there are really that many kids with autism out there, I can't see how it will be possible for them to have enough adult housing for all of them. There are going to be a lot of adults with autism living at home with aging parents. That's the big issue that is going to have to be tackled in the next 20 years in the world of autism.

So for now, I'll just hope my leg gets all better soon. I'll say a huge thank you to summer school, and to my husband and boys for all they do. And we'll manage, for now.

What I fear most

This news piece illustrates what I fear most. A non-verbal autistic little girl, abused on the school bus by a sadistic aide. I want to be sure to say I am not saying anything against bus drivers or aides. My bus driver growing up was one of the finest men I've ever known. The aides at Janey's school---I can't say enough about them. They are wonderful people. What was done to this child was done by someone who, scarily, could be anyone. There are sadistic people out there. And there are people who might not be at all sadistic, but for whatever reason are in jobs they should not be in, people who are not able to deal with disabled children. It's not a job for everyone. Autistic kids (like all kids, but to extremes) can be incredibly frustrating. I would hope anyone caring for such a child would have that trait that would make them not able to hurt the child, no matter how frustrated they are---the love of the child. The love that makes you stop and take a breath and not do something that will hurt the child. I am blessed to have people like that caring for Janey. But I fear the future. I don't think my fear is unreasonable. Janey most likely will not be able to say if someone is hurting her. She can be hard to deal with. I can see her being this girl on the bus. Or the boy at the school Janey is slated to go to some day that was abused. It just takes one person, one moment of losing it, or giving in to horrible impulses, or taking advantage when you think you can, to hurt a child.

I have to have faith to let Janey leave the house. I have to trust that those around her love her and care for her, and will know if they need a break, and will be watching her always, and noticing who else is near here. I do have that trust of her school. But she will be in other schools, some day, or other situations. It's enough to make me want to keep her with me always, but I know that doesn't serve either one of us best.

It's probably harder to do anything about the sadists, as the woman charged here sounds like. I will say I wish she'd gotten a hundred year prison sentence, instead of the slap on the wrist it sounds like. I hope she burns in hell. That's not my usual kind of talk. But it's what I feel. However, what I think something CAN be done about is people that for whatever reason find themselves in over their heads. There are people that are not going into it all planning on hurting children, but they might find themselves handling a child who has cried for hours, or is not toilet trained and has yet another accident, or who might be very tired on a certain day. If that internal guard is not on, the one that I think can only come from truly loving the child and empathizing with them, a person that might never see themselves as an abuser could become one. I hope that all who care for autistic children are treated decently, and are trained well,and paid well, and screened well. If they are overwhelmed, I hope they will speak up, and get a break. If they find they no longer think they can do the job, I hope they will do the right thing and find another job.

This is a raw post, because of the raw feelings reading that article brought up in me. I'll close by saying a million, trillion thank yous to those who are so wonderful to Janey. I am more grateful to you than I can ever say.