For a while now I have been looking at our life with Avi as a road. A road has a beginning, middle and an end. Right now we are still very near the beginning of our road, and it is for sure, long and winding.
How much can change in a matter of days! It was only Sunday when I was so optimistic that Avi would be home with us by the end of the week. Yesterday he had a difficult day at the hospital and today again was very hard for him. We had our family meeting this afternoon. Marsha went to the hospital and I was on the phone. We discussed Avi and his difficulties that he is having and we discussed options for the near future. You see, the hospital program is only meant to be a short term placement. The average length of stay for children Avi’s age is probably about a week. At this point it is not looking like Avi will be home within that week.
The main goal as we discussed is to stabilize Avi through monitoring his meds. Since he got there, he has been on Risperdal (.5 3 times a day) and now they are seeing that the hyperactivity is showing through and he seems to have difficulty concentrating (all ADHD symptoms) so they are going to reintroduce the Vyvanse (a stimulant ADHD med). We should have some idea after a day or two if that is making a difference.
It is still very possible that Avi will be home for Passover, but we just don’t know. We will follow the recommendations of the hospital and they will only release him if they feel his medication is stabilized. He may still be showing the behavioral problems, but they should be able to see some change from the meds. The idea of Avi not being with us for Passover is killing me, but I know that if he cannot, it is for the best. And our Seders will go on (Noam is so excited about Passover and the Seders!)
The big part of the discussion is what comes next. Even if Avi is not home for Passover, the Insurance will only go so far with the paying for the hospital. At that point, he will either have to come home, have a different placement, or if the hospital still thinks he would benefit from staying longer, even if the insurance company does not, we would consider private pay. The last option is obviously the least palatable. Coming home is obviously difficult, as Marsha almost did not make it through three weeks of Avi home last May. So his next placement was a major part of our discussion. There is no chance he will go back to the school where he was. We did not like it and at this point it is clear that they do not have the correct focus for children with ASD (ASD is the newer term for PDD, Autism Spectrum Disorders). So there are some schools that are good with ADS children but his behavioral problems are leading everyone involved to believe that the best placement for Avi will be a residential program, at least until Avi can control the explosive behaviors and safely come home.
This is not a solution that we take lightly. It pains me more that I can describe that Avi may have to live away from us for the long term, but in the end I know that this may be the best way to help him and help our family. That is what is most important. The placement would be in NJ and most likely within an hour or so from our house, so we would be able to visit him frequently.
So we are still near the very beginning of our road with Avi. And the road is long and winding. We may not be able to see the end of the road, but I take some comfort in this analogy. I always have to keep in mind that all roads have ends, and ours will have an end too. I just pray that we make the correct choices so that we can stay on the road without taking too many detours on the way.