Posts Tagged 'Autism'

Every Little Thing

In my last post I explained that Avi would be staying at the hospital for at least the beginning of Passover. Since then Marsha and I have tried very hard to come up with a way to allow Avi to experience some of Passover. Thank God, every little thing we have put out there has come together. The hospital staff has been very accommodating with this, and although it is not the ideal, I think that Avi will be happy.

I said yesterday that we are going to bring some Seder food. We are definitely bringing some Matza, some chicken soup with Matza balls and some Haroset. Perhaps we will come up with a few other things. A few weeks ago, Avi and I were looking through my Haggadah collection (I have quite a lot) and I told him that he could pick one that would be his Haggadah. Believe it or not, he happened to choose the one that was given to me as a gift when I was a boy. I told him that this would now be his Haggadah for every year (this Haggadah is a reprint of the famous Szyk Haggadah. You can see images from it here). We will bring this with us tonight as well, and some other materials from when he was at Schechter. The staff will be told when to give him the food so he can eat some of the Seder food at the same time as we are (or close to it).

Then I got the idea to get in touch with the Rabbi at the Conservative Synagogue that is near the hospital. It happens that both Marsha and I have a history with this Synagogue as we were both USY advisor there at different times. I was also friends with the Cantor and her husband when I was at JTS. I spoke to the Rabbi and he is being so nice and he will go visit Avi on Thursday or Friday afternoon. He will sit with Avi and do a little mini-Seder and sing a few songs with him etc. I think that given the circumstances Avi will be quite happy.

I reported yesterday that Avi started taking Prozac for depression. This morning when I spoke to him he was in very good spirits. He understands that he is not coming home for the Seders and he did not cry about it like all of our other phone conversations. I don’t know if Prozac works that fast, but something clearly is working (perhaps he is also moving into the acceptance stage and is ready to start getting better).

I don’t know if I will be able to post any updates before Pesah starts tomorrow evening. Tonight and tomorrow during the day will be dominated by final preparations for the Seders. So Marsha and I wish everyone a חג כשר ושמח and a זיסן פסח A Sweet, Kosher and Joyous Passover!

The Night Before

OK, so the title is a stretch.  It is now the night before my visit with Avi, but I am tired and I cannot come up with anything more original.  For those who have not figured it out yet, I am on a mission to title all of my blog posts (for as long as I can sustain it) with Beatles song titles.

Anyway, tomorrow I will see Avi. This visit will be just me, as Marsha has to continue cooking for the Seders. Today was the second Shabbat that Avi has been away from us. Last week, I told him to call as normal at 6:00 and I would pick up the phone even though we normally would not on Shabbat. Today I had a problem in that I was going to be at Synagogue at that time. I called the hospital at just before 4:00 in the afternoon and I was told that it was not phone time. I explained my Sabbath issue and they said that it was ok to speak with him.

Avi came on the phone and told me that he did not have a very good day. He got mad and knocked over some chairs. Now Avi basically has two negative emotions. Sad and Mad. He does not really understand any other emotion, so when he says he was mad, it is very hard to figure out what he means, especially over the phone. And he may have knocked over chairs once during the day and the rest of the day could have been fine. To me that would be a good day, but I may never know.

Then he started crying and asking if I could take him home when I come to visit tomorrow. I told him no, and he continued to cry saying he really wanted to be home a few days before Passover so he could do some preparation for Passover. So tomorrow morning I will call him and ask him if he wants to do a project when I come to visit and I will bring materials so hopefully he will be happy from that.

He is keenly aware that Passover is Wed night, and I think he will be devastated if he cannot come home. In fact, I wonder if it will be a worse thing if he has to miss the Seder. So on Monday I will make sure I speak with his case manager and try to figure out if he can come home by Wed morning. I am praying that this will be the case. The other day I had asked about the possibility of bringing him home for the night so he can at least be at the first Seder. I was told that they do not do 24 hour passes. If I were to just take him home, the insurance company would not continue to pay and we could not bring him back. So if it will seem that he will have to be there on the holiday, I am going to really push for us to bring him home on Wed afternoon and then I will drive him back late after the Seder is over. It may be that he will get there at 11:30 or midnight, but I will get him back. Again, I think if he found out that he was not going to be at the Seder his reaction will be so horrible, and I cannot predict what will come from that.

When I was discussing visiting Avi through Passover if he is still there, I explained to the case manager that I cannot come on Wed evening when they have regular visiting. We decided that Marsha and I can visit on Tuesday evening instead, so that will be good. Then I told her that next Sunday will be no problem but the end of the Holiday is on Tuesday night and Wednesday night, so we would have to figure it out (I will be willing to drive on the Holiday if it is the only way). She told me that is was extremely unlikely that he will still be at the hospital at that point, so that is at least a light at the end of this part of our winding road.

It’s now 1 am on Sunday morning. Marsha, Carla and Lisa are finishing up this evenings cooking and hopefully we will be going to bed soon. I cannot stop thinking about my conversation with Avi and his crying to me. It is so hard to hear this and I just have to keep reminding myself that this is for the best and we need to see it through. It is just hard sometimes to remember this.

More news soon.

Two of Us

Since Avi was born, I have been through two periods of unemployment. In both situations I was able to spend a lot of time with Avi than I had on a daily basis. During these two times, Avi formed a very strong bond with me. Over time this has become a real hardship for Marsha, as Avi would often give her problems because I was not there, or just would not respond unless I spoke to him.

Luckily, Avi is beginning to grow out of this phase and he although Marsha has problems with him, they come from the ASD rather than separation from me. What I am finding out is that this bond that began when Avi was born and was strengthened when I was home a lot, goes both ways. Avi spent 5 nights in a Psychiatric facility once before, this past summer. At that facility we were able to see him every day and he was discharged in less than a week to the partial hospital program at Princeton House. This time, we are now coming on one week away, and we are only able to see him twice a week. I can speak with him on the phone every day, but I am realizing how much I really want Avi home. I know that this treatment is in his best interests, but as I said to Marsha the other day, the brain and the heart are not always in sync.

The worst part is not being able to get information quick enough. In a time when I can get almost any information from the Internet in a matter of moments, it is very frustrating when I cannot get anything from his case managers. I understand that they are very busy and are most of the time not at a desk, but again, understanding and feeling are two separate things. So I have left messages and I call every hour to try and find out what is going on.

We saw Avi last night and he was ok, but he is very sad about being away from home, and since we only see him for 90 minutes twice a week, I have no way of knowing if he is improving. I need that feedback from his case manager to know.

Anyway, this posting was just a rant from a father very frustrated with the system and who is dying to have his son back home.

The Long and Winding Road

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.

I Should Have Know Better

With Avi it is often two steps forward and one step back. Yesterday I wrote about our visit with Avi. It was really a great visit and we left very hopeful about the next few days. His new meds seemed to be working and all was seemingly well with the world.

Like I said, I should have known better. When Avi has gone into new programs or a new facility the first few days are often good days while he learns the lay of the land. It is usually the third or fourth day when things erupt. When I spoke with Avi this morning he seemed in good spirits and said he had a good night, despite the thunder (of which he is very scared).

Avi called home at about 6:30 and told me that he did not have a good day. He got mad and threw things he reported. As he was telling me he was getting upset and then it was difficult to understand him. This can then spiral into a difficult situation in itself. I just told him that we won’t talk about that anymore, and he calmed down. Clearly he had some difficulties today and hopefully at the meeting tomorrow we will get a sense of what happened.

I am still hopeful that Avi will be coming home to us before Passover and God willing before Shabbat.

Only time will tell.

Getting Better

Marsha and I visited with Avi this afternoon. He was obviously happy to see us; he was waiting in the common area watching the doorway to see when we would come through. He ran ahead of us to the room where we had our visit and was so happy we were there. He was very playful and giggly while we were there. This was the first time in a long time that I remember seeing Avi so happy. I know much of that is from our visit, but I really think that the meds might be at a place now where he really stabilizing.

On Tuesday Marsha will be meeting at the hospital with Avi’s therapist and we should get some idea of when he will be able to come home. Hopefully he will be able to go back to Princeton House for a few weeks and we will be working our town’s school district to find a good placement for him.

A big thank you to everyone who included Avi in their prayers this weekend, I am sure it helped.

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