Please note that my blog is now called The Long and Winding Road and can be found at longandwinding.wordpress.com.
Spring is finally showing itself and things are perhaps looking a little up for us. Avi has been home now for five days and although there have been some rough patches, I think we are hitting some less winding areas of our long road. There have still been some blowups, but we have some ideas and a plan of sorts.
The main thing that seems to set him off is food and eating. Avi will usually eat a big breakfast and the almost nothing during the day at school. He is a very picky eater and this is also something that we hope to work on in the near future. When he gets home he is ravenous and he will get fixated on one or two things that he usually cannot have (candy for example). This can set him off. We are going to be working on finding a way to get him food to satisfy him and not set him off. If we can do this, we think half the battle is over.
On the school front, Avi is back at Nu View and Marsha will be meeting with our school district next week and we will get the new IEP. On tap for that meeting is to get his classification changed and to pick up the IEP. We know already that we are going to fight to move him to the Newmark School so we will see what they say at that time.
I want to personally thank all the friends and readers of my blog who have sent us very kind and thoughtful emails over the past month. We know your prayers were with us and we will always remember this. I won’t be blogging about Avi as often in the near future as things return to a more normal rhythm. I still plan on continuing my blog, but I hope to go back to writing about our family in general and other things that come to my mind and not just Avi.
I hope you will stay with us through our Journey.
Today’s blog posting is a happy one and I want to start off by talking about a Beatles song (which is something I have not done for quite some time). Sir Paul wrote at least five songs for his wife Linda and I will was the first. It is a very simple song (one of the shortest in the catalog), but it quite remarkable in both style and composition. It perhaps showed the world what was yet to come from McCartney.
I was looking for my post title and I re-read the lyrics to this wonderful song, and I the bridge really sums up my feelings about Avi.
Love you forever and forever
Love you with all my heart
Love you whenever we’re together
Love you when we’re apart
Today Avi is coming home. Now this one is for real, Marsha will probably go pick him up this afternoon and I will see him when I get home from work. He has had some tough times in the past few days, but he is much better than he was a month ago. In a day or so he will return to Nu View academy (more on this in a moment) and he will also have a few evaluations over the next few days to see if he can qualify for OT and Speech. We believe he needs this, and if he does not “qualify” we will have to fight for them anyway.
On Friday we had our IEP meeting which was held at Nu View. At the meeting were our case manager from Highland Park, her Boss, the principle of Nu View, Avi’s teacher from Nu View, his therapist from Nu View, the psychiatrist from Nu View, us and a good friend who is a psychologist working with high functioning ASD kids and helping us as an advocate. Big group! The meeting went basically as I had assumed. They all feel that Nu View is the right placement for Avi, even though we do not feel the same. The psychiatrist there was very reluctant to accept an ASD diagnosis and a good portion of the meeting was some arguing about diagnosis. Diagnosis in and of itself is not a major issue for us, however, the ASD label opens doors that are not open with just ED (emotionally disabled) which is how Avi is officially classified. If we cannot get an autism classification, we will try for MD (multiple disabled), but this was not discussed on Friday and we are going to work on our school district.
They did agree to add into the new IEP that Avi will be evaluated and if he qualifies for the therapies they will be part of the IEP. They also will add that they will search for other possible placements. We have not decided if we are going to accept the IEP or if we are going to fight it outright, but we will decide soon. It happens that our friend who came to the meeting with us recommended a school which is not too far called The Newmark School. After some research through an organization called Aspen Marsha found that their top school in our area for kids with high functioning Autism is the Newmark School. We are going to fight to have Avi moved to this school as soon as we can.
I don’t know what the future is going to hold for us, but I do know that we are getting back onto our Long and Winding Road from this little detour. Avi is on new medications and hopefully with the right therapies and the right school we will see positive change.
I was all prepared to title my post today Glad All Over, but things are not so glad. Avi has had difficulties over the last two days and it was decided that he needs to stay in the hospital a little while longer. Right now it is going to be a day by day thing. The feeling is that Avi needs a school that has a lot of experience with high functioning ADS kids and where he can get the proper therapies. The current school is just not serving his needs.
Of course we now have to go through the whole IEP process with our local school district and we need to put in writing why we feel New View is not the proper placement for him. Marsha is working on that now. If we are lucky, we will have an IEP meeting on Friday, and if not Friday then Monday. Then it should take a week or so for them to write up the IEP and if everything goes our way, and they agree with us in terms of the schools, the process of finding the placement begins. If they do not agree with us, then we have to fight for what we want, and that could take weeks. I am hoping that it won’t come to that, and if we are really lucky, we could have a placement within a month. Hopefully Avi will be home at some point in the middle. The feeling is that he can come home when they see that we have the IEP and are just looking for the placement. The therapists think that with the proper placement, Avi will be able to live at home.
Now I am trying to work out staying in Summit for the end of the Hag so I can visit Avi on Wednesday night. If not, we will work out visiting him on Thursday. My Rabbi said that since the final day of Passover is a rabbinic addition, we can violate it so we can see Avi. I should know soon what I am doing.
For now we just try to stay strong.
I was all ready to write here that Avi would be coming home today or tomorrow. We had an OK visit on Sunday. I went by myself because Marsha was not feeling well and Avi and I spent the time playing cards and eating some Passover food. I know he was having some bad times, but in general it seemed ok. The head nurse happened to be there at that time and she reported that the doctor was thinking that he could come home Monday or Tuesday. Avi was excited as were we to hear this.
I called this morning, but unfortunately I was too late for phone time. The head nurse had answered the phone and she told me that it was a very difficult morning and that Avi was hitting and kicking staff and that he was on One-On-One with a staff member today. So now I am not sure if he will be coming home before Hag.
It is very frustrating for us and I am sure difficult for Avi, but we need to find a way to deal with these explosive moments before it is really safe for him to come home. We were putting the idea of a residential program behind us, but now that is all that comes into my head. I really don’t want to send him away somewhere, but I have to think about the health and safety of my family and this might be what we all need. I hope to hear from the therapist today and perhaps the doctor to find out what we are doing.
So we are back in a waiting moment. There are some good things to report though. Rabbi Friedman visited with Avi on Friday afternoon and I think Avi had a great time doing a little mini Seder with him. Rabbi Friedman also offered to house someone over Hag so Avi can get a visit this week. I may have to take him up on the offer.
More information will be posted when I have it.
Tags: ASD, Autism, Avi
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!
This morning Marsha spoke to the psychiatrist at the hospital and she reported that Avi was becoming depressed and he is getting very obsessive. Of course he is depressed that he is not home and obsession over going home, but it seems more than just that. For example, today he learned that his roommate will be leaving the hospital and he is obsessing over that and how he does not what to be by himself in his room (this, despite not really liking the other boy). The doctor felt that Avi should be put on a small dosage of Prozac, an anti-depressant. We have some concerns about Avi being on too much medication, but we are going along with this for now. If Avi can get over this depression/obsession about going home, perhaps they will be able to make real progress.
As I think of this, I realize how Avi is totally fitting into the model put forward by Elisabeth Kubler-Ross in 1969 where she describes five stages of grief that people will go through to deal with tragedy. It starts with Denial, and this was perhaps the shortest part for Avi, because it is hard for someone his age to deny what is happening. He did not think he should be at the hospital but he does understand that he needs help, so this stage goes by fast.
Anger is the second stage, and that is where Avi has been for quite some time. As I have said, Avi has only two negative emotions, and that is anger and sadness. So he has been mad, to use his terms for quite some time at the hospital. Bargaining is the next stage, and perhaps when Avi was doing a little better for a few days, he was, in his way, bargaining to go home. If I am good, I can go home. As soon as he found out that this did not work, he slipped back into anger.
The fourth stage is depression, and this is where we are today. He is beginning to understand that he is not coming home so quickly and he is getting very depressed. The final state is acceptance, and I can only hope that he will make it there soon, because that may be when he will be the most open to the help that he can get at the hospital.
Tomorrow night we will be visiting with Avi. Since we cannot go on Wednesday they have given us special permission to come on Tuesday. I am already dreading telling him that he is not going to be coming home with us and that he will miss the Seders. This pains me, but it may be the only way to get Avi through. We discussed with his case manager about his coming home just for the Seder and then I would drive him back, but she suggested that that could be even worse. He would be home and then have to go back. And we might end up not bringing him back, so that was a bad idea. She suggested that we can bring him some food from the Seder, so we may bring him some Chicken Soup with Matza Balls. He really loves this and perhaps it will help.
I want to add in my thanks here to everyone who has written me since I began these updates. I have gotten comments like I am courageous for putting this out there for all to read and that I write so stoically about a subject that people have trouble just reading. Courage, I don’t think, has anything to do with this. Writing this blog has become for me very therapeutic. The ability to sit and think this out and write it down has helped me in ways I could not imagine. As for my stoic writing, I don’t think I could handle the alternative. I have to keep things together for the rest of my family, so in truth, I have no choice.
God willing, Avi will be home sometime next week. I hope people are continuing to keep Avi in their prayers. For those who can add his name for Mishaberakhs on Shabbat and on Pesah, his name is אבי בנימין בנ מירים רבקה Avi Binyamin ben Miriam Rivka.