Posts Tagged 'ADHD'

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.

Hospital

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.

Difficulties

This is going to be a very down blog entry. I usually like to write something upbeat, but it’s my blog, and I can write what I want.

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 2nd place in our Cub Scout pack pinewood derby (photo to come soon!)

Honors

Yesterday, Avi brought home a perfect report again from school which put him at ten days in a row and he goes on honors. I know that I have mentioned here before, but they break up his school day into ten periods. He can get anywhere from zero to two points for each period. If he has 16 or above for the day the following day will be a green day and if he has 15 or less the following day is a red day. Five green days in a row gets him a pick out of a prize barrel (deck of cards, matchbox car, etc.). 10 days in a row gets honors (I think that for honors it has to be 10 perfect days in a row).

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!

New Year, More Blog

It’s hard to believe it is 2009. Some days I wake up and I can remember the mid 80s like it was yesterday. When people tell you that time moves so fast, they are certainly telling the truth. It’s been a while since I have written in my blog and one of my two real New Year’s resolutions is to get back to writing regularly. I’ll come to the other in a moment. I want to partially go back to my original plan for this blog which was to write about my family and I am going to do that. I also want to continue writing about things that I think about and current events. So as much as I loved writing a song of the day for every day, I am going to give that a rest. From time to time I may have a song of the day blog posting, but much less frequent. I have been thinking about starting to write movie reviews, so perhaps you will see some of those in the near future (or course they will mostly be reviews of movies I see on DVD and Blu-Ray as we rarely get to the movie theater).

So starting off this year of blogging I want to update on my family. I’ll start with the kids. Shayna is 3 years old and definitely going through a defiant stage. There is almost nothing that she will not try to defy us on, but unlike Avi, she does respond to the consequences of her actions, and I am confident that we will see the end of this phase soon. The other major obstacle with Shayna is potty training. When the boys were training I always remember people telling us that girls were so much easier. Well, I’m here to tell you that they must have been lying. She has been a nightmare with this. One of the main reasons we moved her to a different pre-school is because at her old school she could not be in the pre-school class without being out of diapers (but we are happy with the new school). Luckily, her class is doing a major push, since most of the kids in the class are not trained. God willing she will be a more regular pottier.

Noam is cursed with being the middle child. Definite Jan Brady syndrome. We try hard to give him the attention he needs, and I think much of the time we succeed. He is a fun kid, but is still hesitant with new things. He is starting to get into the cub scouts like Avi and I think he will slowly come out of his shell as he gets more into the scouts. He is really enjoying Solomon Schechter and soon he might know more Hebrew than me!

Avi’s ADHD (and maybe bipolar disorder) are continuing to be sources of difficulty in our home. He is still going to the special school (New Vue Academy) and is doing well there. They work on a point system and the max the kids can get in a day is 20. If Avi gets 20 points today it will be his tenth in a row and that will put him on honors (I’m not entirely sure what that he will get for that) and this will be the first time he will achieve that. Avi gets home at about 2:30 from school and Noam and Shayna at about 4. It is the time between 4 and when I get home that are the most difficult. Starting next week, we will have a behavioral therapist come to our house for 5 hours each week, so that will happen on two or three days a week during that time, so God willing things will get a bit easier.

Marsha is still doing the Pampered Chef thing and is working hard to build her business this year. If anyone wants to host a Pampered Chef party or do a catalog sale, let me know. You could get a lot of free stuff for hosting and you will certainly have a lot of fun.

Which brings me to me. Many people know that I have Crohn’s Disease. I have not had any major problems from this in years, but last week we got a little scare. I was in the hospital for a number of hours on Friday with abdominal pains. They did a CT scan and it was inconclusive (although now they think it was a kidney stone). I am long overdue for a Colonoscopy and I will get that done the week after next. I went to the doctor to follow up last night and he really scared me about my weight, and that brings me to resolution number 2. I really want to get down to a more healthy weight this year. Marsha is doing weight watchers and I have done that in the past, so I signed up to do the online version. I will update my progress here from time to time

Well that is enough information to last for a while. Happy new year to everyone!

Oh, and I was watching a clip from the amazing movie Fame yesterday. It is a great song from the 80s and one of the best movie songs ever.

Enjoy!

Learning

I now know what a red day means for Avi.  On his first day at Nu Vue, Avi got 18 points which was great.  On his second day, he got only 14 points.  This put him in red for today and that means that he lost a privilage today (in this case computer time).  Well, today, he got only 10 points.  So he will be on red tomorrow as well.  I guess that with this type of intense behavior modification one has to learn the consequences of his or her actions before the program starts to work.  Hopefully it wont take Avi too long to figure out that if he follows the rules he will always have green days.

Where I’ve been

When I began this blog my main intent was to have a place to write about my family in general and my children in specific.  Given my eldest child’s mental health issues, I have devoted a lot of space to him.  On top of that, I have given some space to small rants and political discussions.

Unfortunately in the past month or so I have been less able and less interested in writing.  Most of this is due to my sons ongoing care.  Everytime I would report a light at the end of the tunnel, he would take a turn for the worse (two steps forward, one step back).  I just lost the desire to write.

Now, as things are starting to look up again, I want to get back into writing.  And not just about Avi, but about all of my kids.  I will start with an update on Avi and then hopefully as the weeks go by, on my whole family.  At the end of the summer we are going to Disney, so I hope to do a lot of blogging about that (as we are all big Disney lovers!).

On to Avi.  Last time I wrote we were trying to get Avi into a partial hospitalization program.  This has happened, and he has been in this program for about three weeks.  At fist it was hard and he rebelled as much as he can.  This program, though, is set up for extremely oppositional children like Avi, and at this point, he is beginning to learn how to control himself (at least as the program) and he is even participating in his group therepy sessions (where he had not when he first started).

Our school district, in his IEP, stated that Avi should go out of district to a theraputic school that is set up to handel kids like Avi.  He is also supposed to get what they call extended school year, which essentially means that he will go to school 48 weeks out of the year, rather than the normal 36 – 38.

Yesterday Avi was accpeted into a school called Nu Vue Academy which is a public school run by our county education commission.  The social worker from our school district as well as Avi’s case worker from the hospital would like to see him there and soon after the meeting we were told that the school district as approved this.  On Monday, June 30, Avi will begin this program.

So, as the light come more into fucus, we are hoping that this next chapter will be what is best for Avi.


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