Over the past month, we have Avi has been approved for both speech and OT therapies in school which he was not getting before. The speech therapy will help Avi to learn to use words to explain himself rather than emotional outbursts which we should be a big help to him and to us. The OT therapy will help him with his writing as well as a host of other issues.

Avi will be attending sleep away camp this summer! We found a wonderful camp called Round Lake Camp. It is part of the New Jersey Y camp system and as such is kosher and shomer Shabbat to the point where they do not use electricity on Shabbat and they don’t have the kids write or do other things that would violate Shabbat. The camp is the only Jewish special needs camp focusing on children with ASD, ADHD, and other social issues. Avi is really looking forward to going. He will be going for the 2^nd camp session this year, which is three weeks from July 29^th through August 20^th. The day after he gets home from camp, we will be going on our family vacation to New Hampshire! So it will be a busy summer.

The last updates talked about our having the IEP meeting for Avi. We got the IEP back and it was a mess. No goals and objectives and it had nothing about his therapies (to be fair the evals were not done yet, so I do not understand why they could not wait a week or so to write the new one). So now Marsha will have ANOTHER meeting with the school district to discuss what needs to change.

The two biggest changes (besides the therapies) in the IEP will be having Avi reclassified as autistic rather than emotionally disturbed. The ED classification is really a horrible label that can have a negative impact on a child for a very long time. The other change is that Avi was accepted to go to the Newmark School starting in September and it seems that Highland Park is not going to stand in the way of that.

So it has been a good month since I last wrote. We realize though, that with Avi is it always a two steps forward and one step back. I am hoping that we get in more than two forward before the step back this time.

The post Here, There and Everywhere first appeared on The Long and Winding Road.

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.

The post This Boy first appeared on The Long and Winding Road.

It seems to us many days that Avi is not getting any better. We have been through many different medications and therapies and so far nothing seems to work. We have been working with a state run agency for a while now called Youth Case Management, and finally, after 3 worthless case managers, we seem to have found someone who knows what they are doing and is not going to leave for a better job in a few weeks (one case manager was with us for around a month and told us after speaking with him once or twice, “oh yeah, I’m leaving next week.)

So Nicole, our case manager, came to meet with Marsha at home (the only one who did this) and got to see a full blown episode from Avi. She went with Marsha and Avi to UBHC (University Behavioral Health Center) but they wont admit Avi as he is not suicidal or homicidal (thank God). Then I spoke with her on the phone the next day and she would like to see a full Psychiatric eval of Avi (we have never really had a comprehensive one done) and a Neuro-Developmental eval as well. She is thinking that there are signs of Autism spectrum disorder in Avi and perhaps the entire diagnosis (ADHD)  is wrong. If this is the case, everything we have done for Avi over the past year has been a total mistake and we will have to start from scratch.

I guess I really hope that we did have it wrong. I don’t want to know that we wasted a year and that we have to start all over again, but if we have a better idea as to what is wrong with Avi, then we will have a better chance of helping him. So hopefully we will get these done over the next month or so and if we are lucky we will have better news then.

I guess I can end on a happy note. Noam won 2^nd place in our Cub Scout pack pinewood derby (photo to come soon!)

The post Difficulties first appeared on The Long and Winding Road.

I often speak about the troubles we are having with Avi and the difficulties at home. We often lose sight of the accomplishments that he does achieve. While we may have a long way to go with his home behavior, as far as school in concerned he has moved leaps and bounds from where he was when he was at Schechter last year.

I am very proud of Avi for getting on honors.

Now having nothing to do with Avi or ADHD, I came across this great clip from the movie Hellboy 2. If you are unfamiliar with the character, he is a demon from the underworld that was raised by humans and fights for humanity against the paranormal. It is a comic book and 2 major movies. Anyway, as you might guess he is a no holds barred and rough a macho kind of guy.

Enjoy!

[youtube=http://www.youtube.com/watch?v=CAzCPIuUu-s]

The post Honors first appeared on The Long and Winding Road.

For the most part, Avi is a very happy boy who loves to play with lego, loves to play games with his family and loves to have fun. He is a real budding artist and is also very skilled at math. It is these qualities that we sometimes loose site of when dealing with the ADHD and other problems that he has.

My challenge as Avi begins his ninth year of life is to try and take a moment each day to see the boy I just described in him. I know he is capable to showing this and I just need to be strong enough to see it.

So happy birthday Avi. Here is one of his favorite songs.

Enjoy!

[youtube=http://www.youtube.com/watch?v=m_Nz9B1XFio]

The post Happy Birthday Avi first appeared on The Long and Winding Road.

I’ll start with Shayna. Shayna is now in a new school. She is in the 3 year old room at the Y at Parker at Stonegate. Don’t ask about the name, but suffice it to say she is very happy and she is in a group of kids her own age rather than being the oldest kid in the daycare where she was. The director of her old school would not promote her because she is not fully potty trained, and Shayna is being very difficult about that. So we moved her. The new school is in a wonderful state of the art facility and so far everyone is happy.

Noam is in his third week of 1^st grade at Solomon Schechter Day School of Raritan Valley. He is also enjoying his time there, especially since his best friend is in his class too! Mkm will be going to back to school night there on Wed, so I am sure I will have more to report after that.

Avi has been at Nu Vue Academy all summer with mostly positive results. They were closed for two weeks in the end of August, and they reopened in their new facility which is also brand new and state of the art. He definitely likes the new building. Our main concern with the school is that it may not be challenging enough for Avi. Back to school night there is on Thursday so hopefully we will find out more.

In terms of Avi’s ADHD, there is really nothing new to report. He continues to take Abilify which is a medication for bipolar disorder, and it is possible that Avi is bipolar. No one seems to want to label him and we are fine with that. He also wears a Daytrona patch every day which is a transdermal method of taking ritilin.

So that’s it on one foot. Mkm will be preparing a holiday update about our family and I will post that here when it is finished.

Oh, yeah. I am getting very hooked on Facebook! Come find me there!

The post Updates first appeared on The Long and Winding Road.

Things are going well in the Goldwasser household for once. Shayna continues to grow and be a very happy and wonderful 2 ½ year old. She is learning how to be a terrible two at times, but most of the time she is happy, friendly and a wonder to be around.

Noam is also a happy boy, but as always he really suffers from that middle child syndrome. Avi take a lot of our time and Shayna just always seems to be spoiled. We try hard to give him special time, and that usually works. Noam can get very angry when things don’t go his way, but I think that is normal for a 6 year old boy. That’s right, on this coming Saturday, Noam is turning 6! They grow up so fast! We are having a party for him on August 3^rd, since there are three other boys in his class with birthdays around now. We just took too long to get the invites out, so we picked the 3^rd (as did one of the other boys, so there are two parties that day, yikes!)

That leaves Avi of course. Avi has been going to his new school now for a few weeks. As I explained in an early posting, Avi’s day is split into 10 periods. For each period he can get 0, 1, or 2 points. At the end of the day the points are added up. 16 points or greater means the next day is a green day and 15 points or less and the next day is a red day. Red day means that you lose one privilege that day. Since Avi started he has had only two red days, and in fact since last Monday, he has had only 2 days below the max of 20 points. So far this week he is on track for 20 points each day for the week. We will get his something if he does this.

He is still struggling when he gets home, but we are working on that. First off, he is on different meds. He was moved off the Zyprexa and now takes Abilify which is usually used for bipolar disorder, although they are not giving his that label. We were also asked (again) to consider a stimulant for the ADHD. We told the new psychiatrist about our experiences and he suggested that we try Daytrana. This is Ritalin but it is administered by a patch that we put on his hip each morning. He has been on this for over a week now and so far so good. We are feeling good about his meds now and hopefully we are on the right track.

We have also found other assistance. It seems that there are agencies out there that can help with special needs children. The only problem is that they don’t advertise as they have limited funding. So after going through this for quite some time we were referred to an agency that sends a behavioral specialist to our home once a week to work with Avi and us. We are also looking into other methods of helping us learn how to help Avi.

The only other big news is our Disney trip at the end of August and I will write about that tomorrow.

The post Back again! first appeared on The Long and Winding Road.

The post Learning first appeared on The Long and Winding Road.

It is a good thing we took him off the ADHD drugs because bipolar kids on stimulants will often get very depressed and that is what was happening to Avi. He began to say things like “I wish I were never born” and “I don’t want to live with anyone and just be by myself all the time.” Well we took him off the Adderall and that all ended. In fact his therapist said that his sessions after we took him off the drugs were much better and she was able to get much more from him.

Avi’s therapist consulted with our family doctor to get Avi on to a bipolar medication called Zyprexa which is an antipsychotic used today in the treatment of Bipolar disorder. We are a few days in and waiting to see if it has any effect.

The psychiatrist recommended to us that we look at a partial hospitalization program. This is basically an inpatient program where Avi comes home every night and is home on the weekends. We have an intake appointment at a good facility on Monday and if we are lucky, he will begin there the next day. This is a 6 to 8 week program and seems to be exactly what we need.

Today, mkm will be at our local school for and IEP meeting.  We already know that Avi is going to be placed out of district next year, which means that he will be going to a school for children with sepcial needs.  Luckily for us, there happens to be at least two very good schools in our area who specialize in helping children like Avi.  Hopefully he will be at one of them.

Its been a long road and every time we seem to move back one space, we do seem to move forward two, so I think that the end of the road is getting closer.  Sometimes it is hard to see that, but we just keep reminding ourselves that this is a very long process and that everyone who is involved is in this to get Avi well.

The post What’s been going on first appeared on The Long and Winding Road.

In my case, I just want to be back at home with my son helping him to get through his days, but instead, I need to be at work. So in many ways my life parallels this song.

Here is a version from youtube that is called an acoustic version. It is only partially acoustic, as there is one electric guitar and a keyboard, but it is very nice nontheless.

Enjoy!

[youtube=http://www.youtube.com/watch?v=Hwfgev1ILiE&hl=en]

The post Song of the day first appeared on The Long and Winding Road.