Archive for March, 2009

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.

What You’re Doing

Just a quick update on what we are doing in terms of our Passover Prep. We cleaned a lot in the kitchen today and brought a lot from the upstairs fridge to the downstairs one. Our pantry is almost bare and by tomorrow night, the fridge and freezer should be ready for the big clean. On Wednesday night we should be able to start bringing in the Passover foods.

Our menu is pretty complete and hopefully tomorrow I will post with as many recipes as I can get together.

Current guest count for the Seders –

1st Seder – 21
2nd Seder – 22

I don’t think we will know the final number until later this week. Hopefully not the 26 we had first night last year!

Here’s a funny one.


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.


Last night Avi was admitted to Summit Oaks Psychiatric Hospital.

Over the past few days we have gotten reports from the partial hospital program that Avi was not following directions, that he had to be taken out of group every time; he was kicking and breaking things, etc. So the case manager called Marsha in for a meeting yesterday morning. This was to try and decide what to do next. No decisions were really made, and another meeting of everyone who works with Avi (including the home therapists that we have) was scheduled for Monday.

Marsha went about her day after the meeting but at lunch time she was called back to Princeton House because they were starting the transfer process to send Avi to the Hospital. He was just too uncontrollable and he needed a level of care that they cannot provide. Marsha went back and after a few hours of Princeton House looking for a good facility for Avi and then waiting for an ambulance, Avi was brought to Summit Oaks.

The hospital is in Summit, NJ, which is about 30 – 40 minutes from our home, but it seems to be a good facility. The hope is that they will be able to stabilize Avi while he is there so he can come home soon (God willing before Passover).

Leaving your child at the hospital is one of the hardest things a parent can be asked to do. When Avi finally understood that he was going to be staying there, he burst out in tears. Kids cry for many things; when they get hurt, when they don’t get their way, when they are scared. This crying was one of the hardest things I hope I ever have to endure. We had been through this before, as he was an inpatient at a local behavioral hospital over the summer, but no matter how many times, it is still painful to do.

At the same time, it is hard not to think how much easier it will be in the house without Avi being there, and I pray I never feel this sense of shame that I am feeling now because of that thought. I can only hope and pray that he comes back to us very soon and that we will be able to move on from there.

Avi gets to call us once a day and we can call him if we need to. He called us before bed last night and he seemed fine. I called him this morning and he sounded so tired. He said he did not sleep well because he was crying too much. I know he will acclimate to his surroundings, and he won’t be crying every night, but it hurts so much to hear him say that. He will call again tonight and hopefully after a full day there things will be a bit better.

We can visit him on Wednesday evenings from 6:00 to 7:30 and Sunday afternoons from 1:30 to 3:00. We will see him this Sunday and Wednesday, and God willing by next week we can have him home.

His Hebrew name is Avi Binyamin ben Miriam Rivka for those who might be able to have his name added to any mishaberakh lists.

I will update here when I know more.

Chicken Soup for the Soul

My friend Michelle (who I know from my USY Israel Pilgrimage trip) asked me for a chicken soup recipe to bring to a friend’s Passover Seder. I am putting down the recipe that we use here in our home, but I have to note that this is not like any other recipe that I write, in that there are no exact amounts for most of the ingredients. I often say that baking is science and cooking is art. Well if cooking is art, then making Chicken soup is the highest form of art.

So here for your gastronomical enjoyment is Chicken Soup with Matza Balls


1 Chicken
1 large or 2 medium leeks
1 medium to large sweet potato

I usually use a chicken cut up into quarters. The best would be to cut up your own chicken so that you have all of the back pieces but you can buy one in quarters from the supermarket. The chicken should be about 3 lbs.

Place the cleaned chicken in a large pot. There should be ample room in the pot for the chicken, the rest of the ingredients and plenty of water. Cover the chicken with water to fill about 3/4 of the pot. Bring to boil and allow to boil for 10 to 15 minutes.

While the pot is coming to a boil, cut up all the vegetables into 1/2″ chunks. Chop the herbs as well.

Depending upon how clean the chicken was, there will be some stuff floating in the water as well as some chicken fat. You should lower the heat and skim this off at this point. Add all the vegetables (except the dill and parsley) and simmer covered for at least 2 hours up to 6. The longer the water simmers the more chicken flavor. Taste the soup. If you think it needs more flavor, simmer longer.

15 minutes before the soup is done, add the herbs and salt and pepper to taste.

You can serve it at this point, or allow to cool and refrigerate overnight. In the morning, the chicken fat should have solidified on the top of the pot. You can easily remove it.

Matza Balls

Matza balls are actually very easy. You just need to follow these simple directions for about 10 Matza Balls

Beat 2 eggs with 2 TBS of oil. Add a tsp each of salt and white pepper. I also like to add a tsp of ginger. Add about 1/2 to 3/4 cup of matza meal in ¼ cup increments. Mix in well after each addition. The mix should still be a bit watery so watch the mix and stop adding matza meal if it starts to get thick. If you think it is too thick, add a little water or seltzer.

It is important now to refrigerate the mix for at least 30 minutes up to an hour. You can cook the matza balls in the soup or in a pot of water. Either way, bring the liquid to a boil. To make the balls with your hands, wet them and then take a bit of mix and roll a ball in your hand. Do not overwork the balls. Drop into the boiling liquid. You can also make with melon ball scoop. After all of the balls are in the liquid, cover the pot and boil for about 15 minutes. You should end up with very light and fluffy matza balls.

That is about it. Any questions let me know.


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