Longer time readers of my blog might know that when my posting title is the same as my blog title, it is time for an Avi update. I have not written about Avi is quite some time, and a few things have happened recently to warrant the update.
First off, Avi has, in general been doing very well. His school is excellent and we are so fortunate to have found it. I have explained the school’s point system in the past, so I will just add that he is routinely earning 90 or more points a day out of 100. That is a major accomplishment. He has purchased some great items from the school store with his points, including Lego sets, DS games and other toys. He is excelling academically and is even making friends.
Of course the home life is not as great, but not too bad either. Avi has been seeing a great behavioral therapist, and despite the fact that we are going broke paying for it, we are making great strides there as well.
This past weekend; Avi, Noam and I went to the New Jersey Cub Scout Kinus. We certainly had our moments. Avi at times would be gung ho for a particular activity, but then one thing would set him off right before and he would refuse. It was hard because it forced me to stay with him, and let someone else watch over Noam. Noam being the trooper that he is, did not really mind, but it was really unfair to him. So as you can see there is a ways to go. Last year at Kinus bed time was a difficult time for Avi, but this year it was basically fine. He went to sleep without any major trouble. I have posted some photos of the Kinus on my facebook page.
Some of our friends will be aware that we have been very nervous about this summer. We found a great special needs camp in West Orange called Harbor Haven, but the problem is that the whole summer there will cost just over $7000. That’s quite an expense. Avi’s IEP includes extended School year, but that apparently just means that they are required to give us the month of July. For the first time, Avi’s school is doing extended year, which of course means that they are offering the month of July. We were then sweating bullets because during each of the past two summers Avi did not have anything for August and he ended up the hospital each time. We clearly want to avoid that.
I called our case manager at the school district and tried to find out why they cannot cover the camp instead of the school. The answer, which was repeated over and over, was that Newmark (Avi’s school) is an appropriate placement for Avi. Of course when I asked why there cannot be more than one appropriate placement, I got no response. I then spoke to his boss and asked that they look into Harbor Haven as an alternative. He told me to put our request in writing and get it to our case manager. I did this and even hand delivered the letter. Of course I never heard back. A week later I left a number of voicemails and until finally I got a message on our machine that the director of special services was looking into it.
You have to realize that at this point things were getting late. We were fortunate that our local Jewish Federation was offering scholarships for special needs summer camps. They had offered us $1200, but we told them that we would not be able to send him if they only gave us $1200. A bit later they upped it to $2500! Now all we were waiting for was the school. Finally, yesterday, we got the call that the school district would pay only $2800 towards the camp. Since the school was an academic program, they would pay for all of it, but for the camp, which only has a portion that can be called academic; they could only pay a portion.
Today we worked numbers and made sure that the Federation money was still available to us (thank God it is!) Some money will be coming from our Synagogue and with the generous help of parents; we will be able to send Avi to Harbor Haven. Now we just have to pray that he has a good summer there.