Worry, Daycares, Summer Camps, and other stuff I can make myself miserable over

I need to decide who will be watching my child. I just got approval for PCA hours, although it will take months to get everything ready for us to actually hire someone. I asked for PCA hours out of desperation, never thinking Monster would qualify. We were getting desperate about his after school program and all of the fighting I was doing and I thought Monster may be out on the street soon! So we called a home health care nurse and made an appointment for her to assess Monster for PCA hours. This would come through Monster’s medical assistance, which we pay for monthly through TEFRA. It’s a long complicated story, but if anyone ever wants me to tell them my saga of the last two years, I would be glad to email it to you…

I was surprised, and saddened (always a bit saddened) when I realized how many type 1 behaviors (AKA bad behaviors, or “needs lots of help” behaviors) my son displays. It’s hard to have other people come in and look at my child and make statements about him that seem so awful until you realize that they’re all true, and I as the parent am so immersed this child’s life that a lot of this stuff starts to look and feel normal to me. So we got more than enough hours to get our son extra help, and I felt depressed for a few days because I was half-hoping the HHCN would get a bit angry with me and ask me why I had wasted her time, asking her to come out and assess this perfectly wonderfully normal child.

I jumped right in and posted ads for PCAs. It wasn’t until a day later when we started getting calls about the position that my husband discovered what I had done and asked me why on earth I was looking for a PCA now that we would not be able to hire for two months at least, if at all. Whoops. But the women were calling, and I had a few appointments set up to meet with people. I decided to go ahead and meet these women.
The two women I have met so far are wonderful. They are mothers themselves, and one has worked with lots of autistic boys. They both seem like they would do an amazing job caring for my son.And yet.

Both of these women are offering to pick my son up from school, and I don’t want anyone driving him anywhere. One woman offered to sometimes take him to her house to spend the night with her three children and I thought, well first, I don’t think you can count that as PCA hours, and secondly, no, there is a man in your house I have never met. Plus I barely know you. Do you have guns in your house? Does anyone smoke and when was the last time you had your electrical wiring checked? Because, you know, your house could burn down.

I cannot smother my child. I understand this. But he is six and still seems very vulnerable and helpless to me (and apparently also to the HHCN). I want him at our house, not being picked up or driven anywhere. I want him here, in our house in familiar surroundings; with a woman we have interviewed and spent enough time with to trust our house and child with, and nobody else. Just the two of them.This brings me to my next worry. I have never voluntarily placed my son in a home daycare because I don’t trust people as a rule. I always figured centers had double-checks. No adult was ever alone with a child – they were always being watched by other adults, and hopefully that kept everyone in line. Homes could have just one adult, and several children who can’t speak up for themselves. I have put Monster in two home daycares when we ran out of centers close by. But I disliked both of them. I pulled him out of one and was upset but secretly relieved when Monster got kicked out of the second one.

Don’t get me wrong. I know there are many wonderful home daycares out there and many really awful centers. It’s my own prejudice and I admit this.
So now I don’t know if I even want to leave my son with a PCA, if we ever get the hours approved. The one-on-one aide that they found for Monster now is so good with him and M just loves her. The problems have come less and less frequently since she showed up, and she gives my son the one gift that so many teachers and aides can’t seem to do – the gift of believing in his goodness, and expecting the best out of him instead of the worst. So why would I monkey with something that seems to be working at the time?
It would save us money, but doesn’t that money buy us the peace of mind that I must have to go to work and know that my son is safe and well-cared-for?

I have already started fretting over summer break, because my son will have to spend it somewhere, or with someone. We don’t have enough hours for a FT PCA 5 days a week. There are right now two options – the local Jewish community center and the place he’s in now. If Monster’s aide is staying for the summer, I will keep Monster there, no problem. If she is leaving, I already have the JCC working on finding out if they have the resources to care for Monster. I am STRESSING about this and don’t need to yet. I can’t help it. I can’t help at these times feeling a bit bad for both Monster and me, when I think, “nobody wants him!”. Or they do, but they must find someone to help with him and get copies of his IEP, talk with his case worker, etc, to see exactly what sort of child they are dealing with.

Everything is up in the air. And I hate that more than anything. Being in the middle of “not knowing” is the worst place a person could be, in my opinion. Yes I could maybe allow myself to feel excited, as if the whole world is out there for us to choose from, but instead it feels like we’re in a huge crowded department store and there’s something we NEED and there are two left on the shelf and others are trying to grab them and a salesperson is telling us all, “you must wait until we see who deserves these. We don’t know if they will help you or not, and we don’t want you to have them unless we know that!” And the crowd is closing in, all wanting what we need, and I feel like I cannot take my eyes off that shelf for one moment, because someone may snatch them up before I am even given a chance to plead my case.

I don’t want a surprise. I want someone to tell me, “We’d love to have your son here for the summer, and we will make it work out, no matter what!” instead of the more honest “We’d love to have your son here for the summer, but let’s make sure first that we can find someone to help him, and make sure that any adjustments he needs we will be able to make.” Sigh. I hate honesty. But of course if anyone told me the former, I would be immediately suspicious. Gone are my days of being easily excited by great news and helpful people who have not studied my son in-depth.
Sometimes it’s just sad.
It’s time for me to look at Monster pictures again to remind myself why I am doing all of this. His sweet little face is all I need to go on. And it will all work out. It always does, with or without my worrying. So why do I worry?