I am still trying to figure out the school situation. I just don’t know what to do. The ones through the school district are nice and seem to be pretty good. I also have been looking at private schools. They are covered by insurance. We’d have to apply for medical assistance (TEFRA) so we would have a parental fee. But they would cover 100% of the charges and I also found out that TEFRA would cover Thomas’s portion of our health insurance. Once he starts a ½ day program we’ll also probably be able to cut the daycare cost by quite a bit. The more I think about it, I think we’ll just end up being even. I also found out yesterday that there are several transportation services that will bring him to and from the program. As long as it is considered a medical appointment, they will do to or from or both. And it’s covered by insurance. I feel a little nervous about him being so young riding by himself, but the person I talked to said that a lot of families use these services and I’d probably be able to ask for some recommendations. Before I found out about this I was wondering how people do it. Are SAHM’s the only ones that can get adequate services for their children? But this will make it doable. I tried to figure out if I could stay at home, maybe even take a 6 month leave of absence, but we can’t afford it financially and I’ve tried that just short term and I just go stir crazy. I’ve been trying to do therapy on my own, and I do OK with the Greenspan floortime model because I just play with Thomas more effectively to emphasis interaction and speech, but the others I am just not good at. He just frustrated, I get frustrated and we never seem to quite accomplish anything. Maybe as we both figure out what we are doing it would go better, but I just don’t think that I can be a good therapist for my son. We’ve done really well with the floortime, but that might just be because it is play, or maybe it is because M comes every week and helps us play with him better. I wasn’t so sure about the PLAY Project at first because “I play with him just fine without someone telling me what to do”. But both Sam and I have agreed that we’ve come a long way since Feb. I have also learned a lot by just watching M play with Thomas. She’s so good with him and while it’s all well and good to get advice, I learn better by observing. It’s made a huge difference for me.
Anyway, yesterday I went for a tour of an autism day program center. Their autism day program is either T/Th or M/W/F for three hours. It is one-on-one. They had a lot of classrooms but just one classroom for the younger kids. They have an indoor and outdoor gym. They have speech and OT there on site, but that would be separate. It seemed really nice. One thing that put me off about another school I saw was that it smelled, but this one did not. I think it would be a great place for him. I am also looking into some ABA programs. The one that came recommended I have filled out the application but I still have not heard back from them as to how long the waiting list is. I don’t want to send out all kinds of applications if he’s not going to even be called for a year. Or if they are all a year (which is seeming more likely), I can at least know what approach I can take to this. Maybe start him in one program but switch to another a year from now when we can get in. The day program I saw yesterday has a year waiting list, but she said that August is the biggest time of turn over and she said that, no guarantees, but she expects to be able to go through the entire waiting list in August. Lots of people enter other programs or do other things, or move, etc, so she said that she generally goes through the waiting list pretty quickly at times.
I think I am kind of leaning toward that program, but I just don’t know. ABA is really the approach that has the most research behind it so maybe that is what I should do. Again, I don’t know what kind of waiting list we are looking at for that. But is Thomas is really as mild as the doctor seemed to think, maybe, the trials of ABA are a little overboard for what he needs. But, honestly, I am starting to see that his autism is more severe than I originally thought. I don’t know if anything has changed or if it’s just becoming more obvious as he and his peers get older. Probably both. Maybe I just accepted the diagnosis better thinking that he was more on the mild side. Or maybe I am just feeling a little pessimistic and overwhelmed right now (which I am) and that makes me think that he is doing worse than he actually is. Or maybe we/I am just not seeing the amount of progress I was expecting and hoping for. I don’t know. I just wish someone would tell me the right thing to do. I just feel like I am looking time. They always stress how intensive, early therapy is so important and that it will effect how they are able to do as they get older. I feel like if I don’t do intensive enough now, that it will affect the rest of his life, which it probably will. Like I said, I would just like someone to tell me what to do.
I finally called the OT the end of last week. Thomas is supposed to get 1 hour of OT per month, which is a tiny amount of therapy as it is, but she’s only met with him once. Talking to her on the phone she basically gave me the impression that she doesn’t think that he needs it, that his social skills are a huge problem. She also said that she’s been seeing him weekly at playgroup. But it’s not like she is there the whole time and she doesn’t pull him aside and work directly with him. I finally said that I thought it was agreed in the IEP meeting and paperwork that he is to receive and hour of OT per month. She finally started apologizing and said that he’s going to meet with him twice this month to make up for it. So that’s fine I guess. Kind of irritates me. If he’s doing just fine, how about starting on some self-help things, like dressing himself in anticipation for potty training? But at least now I know that he’ll be getting it. Although again, this is one of those times that I wish I was a SAHM so I could oversee it better so I know for sure that he’s getting what he is entitled to and needs. Anyway, when I picked Thomas up from daycare yesterday she said that the OT showed up yesterday without calling to tell them that she was coming, and since it was a bad time of the day, she’s just going to go tomorrow when the other two therapists are there. I had enough of a problem with the idea of doing two therapies at once (which is something that was not clear at the IEP meeting but I now understand can be helpful), but three therapists at once? Are you kidding me? How do you expect to get that to work? What will end up happening is one or two of them will be working with them, and the other will probably end up helping the teachers with the other kids. That does happen occasionally with the two therapists. I can understand that there are times it is better with just one (for just a little bit of the session), and I have made peace with that. But three at once? Come on… I will wait to see what their notes say today when I pick him up, but I’ll most likely be giving the OT a call to make sure that it is separate from now on and that she calls and makes an appointment. That is not too much to ask. At least I am learning what questions I will need to ask at future IEP meetings.
Because of all these questions I am also trying to figure out what to do with work. I mentioned above that I tried to see about becoming a SAHM but it probably would not work out well, or at least work without adding a whole new set of stresses. I have also been thinking about cutting my hours, temporarily which my Dr said she would write a medical note for, or transferring to the other location. I have been keeping track of how much time I spend in the car. I average 2-2 ½ hours per day in the car. Yesterday, for example, I spent 2 hr 50 min driving and drove a total of 65 miles. That is a lot of time and gas money. If I transferred to the other office, it would cut a minimum of an hour off my daily commute. That’s a huge difference. Plus, if I wanted to sit in on a therapy session, I could go to that during my lunch break without having an hour + commute there and back to work. I have liked working where I am, but we also got the funding for our new lab cut, so the wonderful, once-in-a-lifetime opportunity I had with that new lab is gone. I still have job security over there and should have plenty to do, I don’t have that huge, can’t miss out on it, thing keeping me there. But I like the people and I have my nitch. But lastly most of what I do is on the computer so I could probably transfer that easily. Or maybe I could just arrange to switch locations for 6 months or something. I don’t know.
Well, that’s a whole big long-winded list of what-if’s. Again, I just wish someone would tell me what the best thing to do is…
5 years ago
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