Here Comes the Sun

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.

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I will

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.

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Helter Skelter

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.

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This Boy

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.

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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!

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A Hard Day’s Night

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.

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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.

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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.

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A Taste of Honey

I know that I said a few days ago that I would post some Passover menus and recipes. With everything that has been going on with Avi, I have not had the time, or for much of the time the desire. But Passover is coming regardless of Avi’s location, and we are concentrating on our preparations. Noam is very excited about Passover. He is learning a lot of the songs in school and we go over some of them each night. Noam is thriving at Schechter and I for his sake (and ours as well) we will have great Passover Seders. Shayna is getting into the act too and she has learned at least the first of the four questions.

Our Seder plans are basically firmed at this point, with 21 the first night and 22 the second. Our menu is mostly complete as well, and I will include that below. One thing that is always an issue, especially when you have Seders with a lot of kids is how to keep them occupied with the Seder (you can look at some sample pages of my Haggadah where I discuss this as well). One thought that I got from our friend Lisa (who will be at our Seder) is to have a list of questions prepared for the kids. The lists can be set up in so that you have questions that are age appropriate and then you ask questions throughout the Seder. Whoever answers the question correct gets a win ticket or a token. At the end of the Seder, the kids can trade in their tickets for prizes (which we will pick up at the dollar store). This way, everyone will get something, and there will be less rivalry in terms of finding the Afikoman. Also it helps the kids want to stay at the table during the Seder. I don’t know how well it will work, but I will report back after the Seders.

Now let’s get back onto the main topic of this blog entry, FOOD! It is interesting to note that of the 5 main mitzvoth surrounding Passover, 4 of them have to do with food and eating. We are commanded to eat Matza, Marror (the bitter herb) and the Pesah sacrifice (during the time of the Temple in Jerusalem). We are also commanded to stop eating food that come from the five grains (wheat, barley, oats, spelt and rye). And people wonder why there is always food at Jewish events! The whole Seder is built surrounding a festive meal. Without food there really is no Passover.

Our menu this year is actually very much the same as in past years. We begin our Seder this year at about 6:30 which is actually too early to start Passover. We do this because starting at the correct time makes getting to the meal very late. In order to make sure that we do not say Kiddush before the proper time (about 7:05) we will start with serving soup and fish first, and then start the Seder with the Kiddush. We do the same the second night just starting a little bit later.

So here is the menu:

Chicken Soup with Matza Balls
Gefilte Fish – We use the frozen logs that you cook in a pot with your own extras
Roast Turkey
Chestnut Stuffing – This is Lisa’s and I will try to post the recipe
Pot Roast with Orange and Dates
Quinoa – We have not yet determined how we will make the Quinoa
Green Beans, Broccoli, Cauliflower
Apple Cake
Fruit Ice

And probably some more surprises!

I want to end off with the recipe for Haroset that we use at our Seders. This is a Mizrahi recipe rather than the traditional Ashkenazi recipes that many of us are familiar with. Mizrahi means eastern and it is a term used to describe Jews from the eastern Arabic speaking lands. Often this is called Sefardic, but that really is a term for Jews of Spanish origin.

Before the recipe, I have to throw in some Jewish education. Sorry it’s my nature. Haroset is the sweet apple mixture that is found on the Seder plate. The tradition of Haroset goes all the way back to Mishnaic times (before 200 CE) as it is mentioned in the Mishna as something brought to the table on Passover. The Rabbis come up with three reasons for its inclusion. Everyone will probably think of the first which is in remembrance of the mortar that the Hebrew slaves used to make the bricks. This is one. The second reason is in remembrance of the apple. Why the apple? Well the Midrash tells us that the Jewish people survived in Egypt because of the actions of the women. Pharaoh decreed that the men and women should be kept apart in order to stop childbirth. According to the Midrash, during the heat of the day, the women would lure the men under the apple trees and have relations. So to remember this, we have apples in the Haroset. The third reason is to remember the blood by using wine in the Haroset. So to this day, EVERY Haroset recipe (and there are hundreds) have three things in common. They all use apples, they are all thick like the mortar and they all have wine. Beyond that, the sky is the limit. There are traditions to add cinnamon or ginger in remembrance of the straw that was used in the brick making. Some have the tradition to add the fruits mentioned in Song of Songs in the bible.

Here then is my recipe which my mother got from a Mizrahi Women cookbook.

2 Apples
½ C Dates
¼ C Walnuts (or pecans)
1/3 C Sweet wine
½ C Raisins
¼ C Almonds
1 tsp. Ginger
1 tsp. Cinnamon

Quarter and core the apples. Grind apples, raisins, dates and nuts. Add ginger and cinnamon and wine. Mix Well

That is the original recipe. I do it a little differently. First off, for one Seder we make 4 or 5 times this recipe. Second, I core and quarter the apples and put them in the food processor. I process them for a minute. Then I add the rest of the fruit and nuts and process until it starts to get smooth but is still a bit chunky. Then mix in the wine and spices (you can do that in the processor as well, just add and pulse for 20 seconds).

Enjoy!

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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.

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