Posts in month: June, 2010

It’s that time of year again.  The circus is in town.  My wife, son, and I have fun going every year.  We have a small one that comes and sets up on a local field.  The tent goes up and inside is a one ring staging area.  Stadium seats circle it and fans get to see 15 to 20 different acts including high wire and clowns.

Even though there are so many things to see there is only a small amount of performers.  Each will do several different jobs.  When we went last night we noticed one girl who, among other things, spun hula hoops, road the elephants, did a hire wire act, belly danced with camels, and sold hot dogs.  Whew!  Makes me tired just thinking about it.

Most of the show was a good time but one thing marred it.  There were vendors moving through the crowd selling anything from popcorn to balloons to coloring books.  Outside the tent there were plastic swords and hula hoops and just about any other junk you can think of for sale.

Not too long ago I wrote a post about my son Max’s addiction to buying.  He has never seen a piece of junk that he didn’t want to spend his hard earned dollars on.

My wife and I came up with a plan to try and combat this.  It has two parts to it:

1. We instituted a buying moratorium for the month of May.  None of us would buy anything except food for 30 days.  We hoped that by saving our money Max would learn that he doesn’t need to purchase things to satisfy himself.

2. We started Max on an allowance.  The goal here is to teach him the value of money and how to use it.  Perhaps he will start enjoying saving some of it and see it grow.

The first part of our plan worked out pretty well.  At the beginning of the month he would complain loudly when we would remind him about the freeze on buying.

“But just this one thing.  I need it so badly,” he would wail, “I’ll stop buying after just this one!”

We didn’t cave in.  As time went on we noticed that his requests became less and less.  When we had to say said “No” he stopped complaining as much.
Part 2 has been a little tougher.  He was excited; now, like his friends, he was getting an allowance.  Half of it he gets for, as he puts it, “just because I’m Max”.  To get the rest of it he has to do 5 chores each week and he has been loving it.  Some days he has been cleaning out the kitty litter.  On others he has been making his bed.  On Tuesdays he helps Dad put out the trash.

Saving money has not come easy for him.  He still wants to spend it the minute he gets it.  Lately though he has been starting to notice that when he buys junk he doesn’t have any money left over for something he really wants.

And then the circus came to town.

Even though we were sitting high up in the bleachers it didn’t stop the vendors from working their way over to us constantly.  He went through his money fairly quickly but then he turned to us.   So we got a steady stream of “I want, I want, I want.”

We didn’t mind if he asked for peanuts or hot dogs.  We are always trying to get this kid to eat.  And this is our rule anyway.  We will buy real food if he is hungry but not candy or junk.

But he was getting more and more upset and escalated because we wouldn’t buy any of the toys or balloons.  When he begged for a circus coloring book we still said “No”.  Some parents have asked us why.  They believe there is a lot that can be learned in some of them.  But you know what?  Max doesn’t like to color.  Once that book got home it would spend its life in a corner.  He would never even know what the first page looks like.

So as you can guess all the work we put in over the last couple of months were lost when Max was presented with all of these goodies.  Once I actually took him outside to speak to him because he was getting so angry.  When he realized he was about to lose the rest of the circus he quieted down somewhat and just watched the show.

This was just a minor setback.  It was bound to happen.  As the cliche says, “Today is a new day”.  So now we can continue to teach Max what he needs to know about handling money.

And at 6:30 this morning my son and I went out for a run.  Our route passed the circus field.  Max turned to me in surprise.
“How can the circus be gone already?”  The field was completely empty.

“Because after the last show last night the performers and crew worked straight through packing everything away.  They had to move on to their next show.”
I then asked him, “Max, what was your favorite part of the show?”

“The girls.  My favorite was the girl on the trapeze.”

Hmm, we’ve gone from money to girls and he is only 9 years old.  I can see that there are more things I’m going to have to teach him.

It has been really hot these last few days. It is only June for gosh sakes! I wonder what it is going to be like in July and August. We’ve been in the 90s. That is sweltering for the New England states!

My wife has been after me to finish putting in the air conditioners. I had installed the two smaller ones in the bedrooms about a month ago. I don’t have any problems lifting these.

But the big ones that go into the kitchen and office are massive. There was a time I could easily lift one of them but not anymore.

When I first met my wife just over 11 years ago I wanted to show off a little bit. Just like a guy I suppose. The first time was in the fall just after we met. She needed her air conditioner taken out of her bedroom window. Yeah, yeah, of course I can handle it.

I grabbed it and slowly opened the window. I hadn’t gotten too far when it slipped out of my hands. It fell backwards out of the window and crashed two stories down into the yard below. I whipped around and looked at my future wife. She said the shock on my face was priceless.

I ran down the stairs, out of the door, and around the house. There it was, crushed. Luckily no one had been there to get hurt. Across the street were several men building a brick wall. They had heard the crash. When I came out they started laughing and pointing at me. I just picked it up and moved it to the curb for trash. Then I sheepishly walked back into the house.

It didn’t seem to affect our blooming relationship but unfortunately her parents lived downstairs. After 10 years my father-in-law still hasn’t let me forget that day.

Late spring the following year I tried to be macho again. My future wife’s parents needed their air conditioner put in their living room window. Just like the last time I said of course I can do it.

I went into the basement to find it. I picked it up and carried it up their very narrow stairs. I had to twist some to make it work. I got it into the living room and placed it into the window.

This was fine and they were happy. But…the next day I couldn’t move! I had strained my back pretty badly. The next 12 weeks I worked with my wife’s chiropractor to get it back in shape.

Ever since that happened I have had to be careful lifting heavy objects. Luckily every spring and every fall there is someone available to help me out.

So to appease my wife I called a friend that lives on the other side of town. He is a big bear and very strong. Perhaps in a former life he was a weight lifter. He had removed the air conditioners last fall so I knew that it would take him only minutes to put them back in.

He told me he would be happy to do it but then, as is life, things kept getting in the way. He finally called me and asked if he could send his 15 year old son in to take care of them. He feels it is time that the boy gets a paying job. He thinks that this would be a good start for him; just to get used to working for money. In this case we would pay Donny five dollars which would actually come out of his father’s pocket.

This wasn’t a problem for me. As long as the boy could handle them he was welcome to install my air conditioners.

When I mentioned it to my wife she liked the idea but she commented that it might be tough for him to actually get a job because he has several disorders just like our son Max. His main one is reactive attachment disorder (RAD).  Children like this tend to react socially in inappropriate ways.

Because of this it can be difficult to hold on to a job for any length of time.

Even though Max doesn’t have this disorder we worry that because of his bipolar and asperger’s he might have problems too. But as for Donny, it’ll be great to have him move our air conditioners.

He arrived on Thursday afternoon; sweat was pouring off of him because it was so hot. I showed him what needed to be done then brought him into the basement. The first step was to tip them over. When we had that flood down there in the spring they ended up sitting in water. Luckily we found that both had drained and were completely dry.

The kid is like his dad. He lifted each of them like they were fluffy pillows. And then one at a time he carried them up and installed the first in the office and the second in the kitchen. Like his Dad, it only took a few minutes.

Before Donny left I thanked him profusely. After he was gone I called his Dad to let him know what a great job he had done. My friend was ecstatic and thanked me for allowing his son to do the job. Um, okay, not a problem.

My wife had been worried that they would smell terribly musty since they were in all of that water. Since I was home alone at the time I cleaned them and then turned them on full. Yes, they smelled badly alright! I opened all the doors and windows so hopefully the bad air would end up outside. I also sprayed the backs of them with deodorizer.

After about an hour neither one smelled musty anymore. Once my family got home there wasn’t a smell in the house and it was nice and cool.

So finally we had our little oasis in the middle of the hot weather.

But do you know what? It was too cool on Friday to even bother with any air conditioners. Better to enjoy the nice breezes anyway.

Today was the start of Max’s summer school program. He is not going because he is behind in his work; this is a regular program in this school to help their special needs kids through the transition from one grade to the next. By the time September and the start of school arrives they will have become comfortable in their next grade level. They will be ready to start learning next year’s work.

During the summer school work is mixed with field trips and play time. For example, on Mondays and Thursdays Max is scheduled to go swimming in the town pool.

It is great for the kids and it certainly is wonderful for us parents too. We don’t have to worry about finding daycare for the summer as we continue working at our jobs. Not only that but the program is flexible enough so if we go away for a week or more during the summer it won’t impact our kids’ school work.

But as every parent of a child with special needs knows nothing ever goes smoothly. Most of us know that we have to get an IEP (Individualized Education Program) either set up or renewed each year. This makes sure that our children get the required school services that they need.

Max is 9 years old but he has problems with his handwriting. It is very difficult for him to hold his pencil or pen properly to write even a little legibly. I know, some people have commented that he would make a good doctor. But as part of his IEP he gets two sessions of Occupational Therapy a week to work on writing. At the same time he is taking a typing course so that a lot of his work can be done on the computer.

Max’s school is pretty good at following the IEP requirements. A lot of schools whether consciously or unconsciously forget; parents have to keep track of what is going on so everything happens. Max’s typing didn’t start until the second half of the year when we complained it wasn’t happening.

But it is not just the IEP that parents have to watch. There are many other issues in a special needs child’s life that must be taken care of too.

Don’t get me wrong. I know that “normal” kids have issues that have to be watched but the ones with disabilities and disorders generally have even more things to worry about.

Another example is transportation. Max rides a van to school every day and it takes an hour to get there. Every year we have problems with the bus. Last September a new bus company had taken over the contract for our town. Their goal was to eliminate what they considered waste:

• They combined upper and lower grade students in single vans. There were two results from this:

1. The van was traveling between the children’s homes and two different schools. The younger kids, like Max, were always late for class and very late coming home at the end of the day.

2. The older children were teaching the younger ones things they didn’t need to know like smoking, profanity, and sex.

Along with one other parent we complained over and over again to the van company and our town school system. They finally listened and added a van to the route. And in fact they ended up subcontracting our earlier van company which already had everything established.

• We had campaigned the year before for a monitor on the bus. The young kids were swearing a lot and fighting with each other. This meant that every morning they had to start out in the time out room at school before they could join their classes. At the beginning of this school year the company cancelled the monitor and we had to fight for one yet again.

At the end of it all we had a van for the smaller kids and a monitor and things went smoothly.

But then the summer program started. This morning Max was waiting at his usual time for the van. It didn’t show. We got a call at 7:30 from his van company which informed us that their contract had ended. The company that subcontracted them had decided to do the route themselves.

This was a shock. We immediately called the new company to tell them the ride was late. They responded that several children had been slow getting ready so the driver had had to wait for them.

And, oh by the way, why hadn’t we been informed about the change? They told us every parent had been called. They even insisted that they had talked to us. Hmmm, interesting, it is only my wife and me and we didn’t get any calls.

The driver was a half hour late. No, there weren’t a lot of students that were late. There was only one child on the van. Now I can understand him being late because he is always the last one to be picked up. All these kids know what time they have to be ready and they always are. This boy was the first today.

Even if things went smoothly from here on out today we know that these kids would be late for school. I know Max hates to be late so he will be in a bad mood. On top of that he ended up sitting beside the one child he never gets along with on the van.

Not only that there wasn’t a monitor and the driver doesn’t speak English. We immediately called the company again and asked where the monitor was. They claimed our town didn’t authorize one for the summer. They also told us that this was the way things were going to work next year too.

Um, I don’t think so. They haven’t dealt with us or the other parents yet. We immediately called the town school department. The woman in charge was shocked that there wasn’t a monitor. She was going to take care of it when she got off the phone with us. Sometimes we get ignored after we get a promise like this so we will be after everyone to get things back to where they should be.

So just like with an IEP special needs parents have to keep track of the transportation constantly. Everyone should get to know not only the important contacts in the transportation companies but also the people to call in their children’s school.

If the kids are sent to special schools by their town school department then it is important to know whom to contact there too. Not only will these people be good for resolving issues but the head of the town school special needs department should probably be involved in the yearly IEP meeting as well.

So, Max’s van issues will be resolved, hopefully sooner than later. But parents always need to stay informed so they don’t unknowingly lose benefits that have been established for their children.

Thursday was too hot and humid for me. It was in the 90s with high humidity. This might be okay for the rest of the country but it is way too hot for New England.

On days like this I just swelter. I have multiple sclerosis. One of the symptoms is a problem with heat. On the one hand it can take a lot out of me but on the other I love hot showers and baths. I can stay in them for hours at a time. I’ve been known to fall asleep in the tub.

I also get cranky and have a difficult time listening to people without getting escalated.

My post is not about multiple sclerosis today however. It isn’t even about the heat. It is about what happened on Thursday.

These are the days that I have scheduled for doing handyman work for several of my clients. On that day I had to paint the inside of a woman’s porch. At the same time Max is home from school this week. He gets four days off between regular school and his summer program.

I decided to take him with me while I worked. I always remember the times my Dad used to take me to work with him. Since he had several jobs I could go with him after school and on weekends. We were together a lot and these were the best times!

I don’t have the opportunity to take Max with me because most of my work is at home. On the days I am doing pca or handyman work he is in school. But since he had a day off he came with me.

It is not the first time he has painted; he once helped me paint this woman’s back porch. He did a good job so I wasn’t too worried

On this day we were tackling the ceiling and the posts around the screens. The first thing I did was to start him on the bottom of one of the screens while I started prepping the ceiling.

I explained to him exactly what he needed to do and what to watch for. I also told him to take his time and be careful about getting paint on the floor. I had newspaper laid down and up against the boards so I assumed it would be okay. I mentioned that it should take more than five minutes to get it down. He generally likes to speed through any project he is working on.

I then started on the ceiling while keeping an eye on him.

Dads will agree with me that it is so nice to watch their sons tackle jobs like this. Not only do they learn skills to use when they get older but also when that day comes Dad will be able to just sit back and watch.

So that side of me was primed. But the other side of me was still very cranky. He proceeded to ignore my directions and do things his way. These included getting paint on the floor; arguing with me; getting disrespectful; and being disconnected. It seemed like his ADHD was in full swing.

The board he was painting took a half an hour but he only had the paint brush in his hand for four minutes. The rest of them he was doing the other things I mentioned.

As a result I wasn’t very respectful to him. I kept speaking to him sternly. He finally decided that he didn’t want to paint anymore. Another “DUH” moment! After being badgered so much he didn’t feel confident enough to continue painting.

My client ended up giving him some other chores to do but by this time he wasn’t very happy. He would start them and then give up.

I thought about it and realized Dad was doing well that day (please read sarcasm here). I brought him back to the porch and suggested he get up and use the roller to help me paint the ceiling. This was just what he had been waiting for all day and he spent quite a bit of time up there.

He was doing a decent job but Dad still couldn’t keep from snapping at him so he soon gave up.

After the job was finished we headed home. I thought about everything that happed as I drove along. As we pulled into the driveway I told Max he had one more task to do. I directed him to come to the driver’s side door. When he did I pulled him in and hugged him. I kissed him on top of his head and told him I loved him.

His response was a very gratified smile. After that he seemed to have forgotten what a tough day it had been. He couldn’t wait to get inside the house to tell Mom about the grand day he had painting the ceiling.

Whatever the reason for my crankiness; I don’t care if it was the heat, my multiple sclerosis, or Max’s ADHD that caused it. Here was a great father and son project that I couldn’t recognize. Hopefully I haven’t turned him off of painting after the day he had.

I have to start seeing when we are in father and son moments and work with that. I’m hoping that my hug and kiss was enough to get passed our tribulations that day.

And here’s to many more moments where I can pass on knowledge. Hopefully I can relax and just enjoy those times.

Max and I went to Fort Foster in Maine again. I like to talk about our trips there. We generally have a lot of fun doing tons of stuff like:

• walking the hiking trails

• climbing the buildings built for World War II

• swimming in the ocean

• playing in the playground

• hunting for special rocks, clams, and sand dollars.

But on this day it was different. It was hot, sunny, and muggy. Dad was asleep at the wheel. What I mean is we arrived at 11:30 and Max immediately took his shirt off and headed for the beach and the water. I know all the Moms’ red flags went up to hear me say this. But let me continue.

Even though it was such a hot day the water was cold. I found that when I went in my feet immediately froze. I found it best to walk along the edge and then pass to and fro into the water; zigzagging until I was up to my knees. I found that this was the best way to get used to it.

Max had no problem moving right in. He spent the next three hours looking for periwinkles and clams in the water. The park has several small beaches so as he finished up with one we would move onto the next.

At 2:30 he found a Dad and son that were searching for sand dollars. When he tried to join them they welcomed him with open arms. The three of them continued to search together. Eventually the Dad found a whole dollar, a hermit crab, and a very large snail. Max discovered half of a sand dollar and he was very excited. And the son actually caught a lobster which he then let go.

But now here’s the “asleep at the wheel” part. My wife called at 3 pm and during our conversation she asked if Max had put on sun screen. Here was a “DUH” moment! I never thought of it. We had been here several times in the spring when we didn’t have to worry about it. Besides that it has been 16 years since I had a bad sunburn; I’m generally very careful.

I immediately called Max over. He looked okay but I put the stuff on him anyway as he protested strongly. I didn’t have to touch his back because he had put his shirt on a couple of hours before. It was a muscle t-shirt that left his shoulders and arms bare so I lathered them up. I also did his legs, feet, and whatever parts of his face he allowed me to put it on.

After that I put it on too. I covered my ears and back of my neck too.

Later on, after the others went home Max and I were walking down the hiking trail. I was in front of him and I glanced back once to see if he was still there. I noticed several spots of red on the inside of his left knee. They looked almost like blood.

I mentioned it to him. He had a knee length bathing suit on so he pulled it up to check. We both came to the conclusion that it was a rash that may have been caused by rubbing against the edge of his suit.

But about 5:30 when we were just about to leave he started to complain that it hurt and he was having trouble walking. I looked at it and discovered that it was now a massive swollen mess. It was still soft and smooth like the rest of his leg but it bothered me.

After we got home I sent him in to show my wife while I unpacked the car. When I got inside she informed me that it was now very hard. We were both worried. We still didn’t know if it was a bite, or a sting, or something else. She even wondered at one point if it was poison ivy.

While we were driving home I had taken the ice pack we had for our drinks and put it on his leg. By that time it was fairly warm but he said it helped a little. At home we found a cold one to replace it. Then he felt much better.

In the meantime he had taken his shirt off and we discovered that his shoulders and arms had turned a bright red. Max now has his first sunburn ever! His skin is so pale that the burn stands out very sharply. And when my wife checked me she found the back of my neck and arms just as bad.

Max complained until we put ointment on it. Dad complained until he got the ointment too.

So this is where I “fell asleep at the wheel”. I forgot the sunscreen until it was too late. I didn’t keep a close eye on him so I don’t know where the “rash” came from. I felt really bad about both…still do.

But as my wife says as far as the sunscreen goes, maybe he will now remember to put it on. And as far as the “rash” goes I’m not sure I could have protected him from that.

When he woke up the next morning the swelling had gone done and it just looked like red spots again. And he didn’t have any pain from the sunburn. The only think was he didn’t get up until 8:30 when my wife had to wake him. This is a boy that rarely sleeps passed 5:30 in the morning. I don’t know if this had anything to do with it or if he was finally just getting caught up on sleep.

Anyway he’s my son and I suppose I’ll always worry about him. I’m 54 and my 84 year old Mother still worries about me!

But with all of this Max and I will still enjoy our Fort Foster days.

People seem to be really hung up on chemotherapy for curing their cancers. According to Cure Search this kind of treatment uses drugs to treat a disease. Most people know it for cancer treatments. But does it work?

Recently I was talking to a longtime friend who informed me that his Dad is going through it now to treat a rare form of bone cancer. He told me that there has been no improvement in his condition. In fact, he appears to be getting worse. He wants his Dad to stop this because he is convinced that the drugs are actually killing him.

Does his belief have any basis in fact?

Doctors have known for quite some time that a cancer can come back in a more virulent form within 5 years. This is why they keep their patients monitored and test them every six months. According to Doctor Andrew Weil medical schools are teaching their doctors-in-training to expect a recurrence.

How can this happen if the treatment destroys the cancer cells?

Most people believe that if they undergo chemotherapy the cancer cells in their bodies are going to be destroyed. Once this happens they will be cancer-free.

As a result they don’t understand why it can suddenly show up worse in 5 years. Not only that, it can appear in other parts of the body as well.

My Dad had throat cancer in 1980. It was treated and believed to be cured. He continued to work and have a productive life. Then in 1985 it reappeared. This time doctors found that it had spread through out his body. Now, there was nothing they could do. He was gone within 6 months.

Why if it was cured did it come back? An illustration:

Most probably not all of the cancer cells had been destroyed.

We have all seen those antibacterial soaps that are advertized on television and the radio. Some of us may have actually used them. Have you noticed how the containers say they will destroy 99.9% of the bacteria on your body when they are used?

This means that one percent is still on your body. Please note that there are two kinds of bacteria. Some are good and beneficial. The others can be very destructive. What is left is the strongest. Remember Charles Darwin’s “survival of the fittest”? Because they are stronger they can mutate and become even more powerful…super germs.

It is the same thing with the cancer cells. If any are missed they become stronger. When they reproduce they can migrate to other parts of the body. Once there they must mutate to survive in that area.

They now become much harder to eradicate.

But are people cured if the cancer doesn’t come back within 5 years?

Possibly, but frankly 5 years is not enough time to prove that someone is cancer-free. It can come back anytime and anywhere in the body and will probably be much worse.

My Mother is a breast cancer survivor. It was found in 1989 and taken care of. After that she had tests done every 6 months for 5 years; it never came back. After seeing how my Dad’s cancer recurred she has made sure that she continues to get tested every 6 months. It has now been over 20 years.

But can the chemotherapy actually play a part in making it worse?

The best case, if you can call it that, is that the drugs only misses some cancer cells. In reality though they do much more than kill the bad cells. Like the anti-bacterial soaps they do not distinguish between good and bad. They also destroy cells and bacteria that help us survive

That is why doctors advise their cancer patients to improve their diets. There are foods that can prompt the regrowth of the good bacteria and cells to help keep them healthy.

What is my friend going to do if he doesn’t want his Dad to continue the chemotherapy?

He has been talking about using alternative medicine. Some of these appear to work; others don’t. There is a claim by The Health Wize Report that chemo has only a 4 percent success rate while some alternative therapies are much more successful.

He has been researching other methods because he is convinced that there is something out there that will help his Dad much more than the chemo has. Something that won’t kill him.

On a side note, I have talked about my clients that I take care of as a health care assistant. One girl has multiple sclerosis very badly and has been in a wheel chair for quite some time. Her doctor started her on chemotherapy in the belief that it will help her situation improve.

On the contrary all we’ve noticed is her health declining at a much more rapid rate. Another of her doctors has convinced her to get off of these drugs and looked into alternative methods of saving her life. I have heard that she has been slowing taking herself off of them.

So what am I saying here?

• Don’t believe that chemotherapy is definitely going to cure you. Do a lot of research to make sure it is right for you.
• 5 years is not necessarily enough time to determine if you are cancer-free.
• Understand that not only may the chemo drugs miss cancer cells but they may also contribute to a decline in your health.
• If you are going to subject your body to this kind of therapy make sure you are eating properly.
• If the chemo doesn’t work, or even if you aren’t sure that you want to use it, research the alternatives out there to find the ones that really may work. Some may just be proverbial “snake oil” junk.

The most important thing is to not give up. If it doesn’t work find something else. But whatever you choose, whether it is chemo or an alternative, make sure it has a good success rate and it is right for your body.

On Saturday we went to Max’s Cub Scout Blue and Gold ceremony. What we didn’t know at the time was that he was starting to run a fever. We had a hint something was wrong because he was so tired. Because things were running fairly smoothly we didn’t think much about it.

Sunday was Father’s Day. In the morning I was so tired myself that I couldn’t wake up. Several times Max came in to ask when I was coming downstairs. The last time I told him I would be 2 minutes…then I slept for 20. I didn’t wake up until my wife came in to find out what was happening.

I am surprised I was able to sleep so long. My son is usually very impatient and comes after me over and over again until I jump out of bed, usually very cranky.

Today I was able to slowly get up and wander downstairs. Passing through the living room I noticed Max was lying down on the couch. My wife informed me that he had a terrible headache and she had had to get up several times in the night to comfort him.

Now that I was up he was excited. They had gifts for me. The first one Max had already given me on Saturday. It is a grey t-shirt that advertizes that “Dad is a grillin Man!” Um, okay, if they say so. I actually think my wife and son are hoping that it will prompt me to do more cooking on the grill.

Now I got the rest of the presents: a pair or shorts and a jersey. Very nice choices but where are the scratch tickets? Where are the tickets to Canobie Lake? Just kidding.

This was basically the end of my Father’s Day. It turned out we had to take Max to his doctor’s walk-in clinic to find out what was going on. Here it is the beginning of summer and he was running a fever. He also had a massive headache and was feeling very poorly. All the way he kept an ice pack on his head and he had already taken some Advil.

At the office they told us he had a virus and we should just keep giving him Advil and ice packs until it cleared up.

On the way home he insisted he still wanted to go to church. We got there in time for the start of the service.

Later we went to give my wife’s dad his present. It is a black t-shirt with the American flag and an eagle on it. But even now Max was very subdued. He kept trying to do the things he loves like climb trees, run, and play ball but it was taking too much out of him.

On Monday morning we were going to keep him out of school but since it was the last day he insisted on going. We expected a call telling us to bring him home but that didn’t happen.

As my wife said today it was so nice and quiet while Max was sick. When we got home from church on Sunday he curled up on the couch in his toy room. He slept for 2 hours. He had been slow and very subdued. Now, we really don’t want him to be sick all the time. It was just nice to have a little relief.

Ordinarily on Sundays he would be cranky. He would be expressing some of the symptoms of ADH, Bipolar Disorder, or Asperger’s Syndrome. This was kind of a break.

But seeing how badly he felt it will be nice when he is better and can start enjoying the things he really likes to do.

The 2010 Cub Scouts finally has come to an end. There is one overnight scheduled for August but that is pretty much separate. The ending comes with the “Blue and Gold” Ceremony. This is when the scouts finally earn their rank and the older boys move on to Boy Scouts.

It had its ups and downs for us but that is generally the case when we have places to go. The last two that we’ve been to has started at 6 pm but everything is always late. Dinner was always served after the opening ceremony but wouldn’t start until about 7 pm. After that there are the awards and then some entertainment. We are generally out of there by 9:30 pm.

This is all fine as it goes but Max is now 9 years old. He has several disorders including ADHD, Bipolar, and Aspergers. As a result he can start off calm and receptive during the evening. But then he gets very tired and anxious and this causes a lot of meltdowns.

On top of that, since dinner is so late he is cranky because he hasn’t eaten. We always try to get him to have at least a snack beforehand. But he is always too excited and can’t even stomach the thought of food.

Tonight the meet was scheduled for 5 pm and the scouts were asked to start arriving at 4:30. The new pack leader likes to run things by the book and wants everything on time.

Since it was a warm summer evening Max and I decided to walk. Or rather, I walked and he scootered. It was a nice pleasant 20 minutes. We actually arrived at 4:20. My wife was coming by car and she planned on joining us right at 5 pm.

When we arrived my son joined some of his mates and they had some fun while waiting for the program to start. But as the time got closer to 5 and there was no Mom he started to get anxious. Several times he talked me into walking to the parking lot with him to see if she had gotten there yet.

At 4:55 pm he was very upset; she hadn’t arrived. His anxiety skyrocketed:

“She’s not coming. I know she isn’t.”

“Max, she still has a few minutes before she said she would be here.”

“No, she isn’t coming.”

“I bet she is in the car right now driving over.”

He wouldn’t believe me and sat on the curb moping.

Right on time we heard the familiar rattle of her car and she pulled into the lot. As she turned into a parking space Max flew to meet her. He was so excited that she had actually arrived. Now he was ready to settle in for the festivities.

Amazingly the program started on time. The boys brought the flags in and some announcements were made. But guess what, my son was starving. Well, Duh! He didn’t have anything to eat before we got there. So he was cranky and whined until it was time to get into the food line. We were eating only 20 minutes after everything started; so much better than the hour last year.

But after all of that he only had a couple of bites before he was done. He was then off to play with the other boys. Now the anxiety was gone. He didn’t need his parents trailing after him.

But as time and the program went on Max became more and more tired. All the pictures we have of him receiving his awards and helping on stage show him yawning and yawning…and yawning. The other boys were having lots of fun; he just wanted to curl up and sleep.

After everything was complete it was time for the entertainment. That night it was a traveling petting zoo. Mom decided to go home at this point. I went and stood at the back of the room. All the children sat on the floor circling the host. As he brought out each animal the kids oohed and aahed; even screamed sometimes when seeing a particularly scary animal or when one startled them.

Max kept his eyes glued on them and when given the chance would touch or pet them. But as time went on I noticed from the back of the room he had lied down on the floor and was staring straight ahead. I went over too him and suggested that we could leave then if he wanted. But he responded as he sat up that he wanted to pat the small alligator.

When everything was over Max and I headed out the door to go home. He hopped on his scooter and flew across the parking lot. I followed leisurely behind him. Not really, I was exhausted so I was dragging myself after him.

Just as we got to the end of the parking lot a lightening bolt streaked across the sky. This was enough for my son. He returned to the building and asked me to call Mommy to get a ride. This wasn’t a problem she was waiting by the phone just in case.

When we reached home he went right to bed and was asleep by the time his head hit the pillow.

I skipped over his awards while writing this. He actually made rank; he had been working on “Bear” all year. He has gone through Tiger, Bobcat, Wolf, and now he is on the next level. Next year he will be working on Webelos I and the following year will be Webelos II before going into Boy Scouts.

He also received his swimming pin, several belt loops, recognition ribbons, and beads. He loves working on all the projects but he doesn’t see them as necessarily part of Scouting. For example, he has been swimming since he was 6 months old and has taken a lot of lessons and passed many tests. During one of our swimming sessions I gave him the Cub Scout swim test and he completed it without any problems.

Because he would be doing these things anyway getting recognition for them always surprises him. When he was handed the swimming pin he was open mouthed. Why? He was just doing something he loves; he hadn’t been doing it for the award.

Max did really well tonight. But you know, as I watched the other kids it made me think he is not much different from the “normal” ones. Don’t get me wrong, some of them may be on meds too but I can’t imagine all of them are. But they all seemed to have some of the same issues my son does based on how they were acting. Should they all be on medication? Or is medication overrated?

Today was commencement day at Max’s school. It had some very surprising elements. It’s not like we hadn’t been to any of them before. In fact we knew what to expect:

• First, parents and teachers are honored who helped to make sure everything went smoothly during the year. To her surprise, last year my wife was one of the honorees.

• Then, each student is congratulated for completing their current grade.

• And then the announcements and applause for the students that are moving on. Some of the 6th graders will go on to the school’s special needs middle school branch. All the others are generally absorbed into their towns’ regular school systems.

My wife and I figured that today would be no exception. And though that was the schedule, there were some differences.

The first one happened before Max even left. As he was going out to the van we mentioned we would see him in school that morning. He was very surprised, “Why are you coming to school today?”

“It is graduation day. We are coming to see everything that happens.”

He expressed surprise; he didn’t know that anything special was happening today. But he was glad that we were coming.

The first thing we did before we left was to call his mentor. She is generally scheduled to come on Fridays and spend a couple of hours with him. Today we knew that Max would probably want to come home with us; he does every year. She had no problem moving her time from 3:30 to 1 o’clock.

When we went to school everything went according to plan. There were the announcements. There were the presentations. There was all of the applause.

But then we noticed that most of Max’s class was moving on, including his “girlfriend”. He knows this; he has been expecting it. He is currently in the 5th grade class even though he does 3rd and 4th grade work. He will be staying in the same grade next year too. So far he hasn’t had a problem with the kids leaving because most of the new ones moving in are from his old 3rd grade class. They are his friends too.

The big thing, we think, is that when he realizes his “girlfriend” won’t be travelling to school on his van with him anymore, there will be trouble. The two have been attached at the hip for 2 and a half years now. We don’t think he ever would have gotten on the van the first day if she hadn’t been on it. How is he going to react next week when the summer program starts and she isn’t there?

I sat in my chair and watched all of the kids. I know he loves this school but I also know that he would like to go back to a regular public school. I know one of the reasons why; it is because he doesn’t like to be reminded that he has ADHD, Bipolar Disorder, and Asperger’s Syndrome. But I didn’t understand the depth of his unhappiness until I saw the kids again.

Each has problems. Some have a problem with noise so they constantly wear head phones. Others become so overwhelmed in a large setting like this that they run out of the room, or cry, or bury their heads in their laps. There were even some tantrums while we were there.

Max doesn’t like the idea that he could be like these kids.

I had another interesting thought while I was there this morning. Two things that studies show are that:

• The majority of kids with disorders are born to older parents.

Out of the 40 or so children who’s parents showed up only two couples were older than 30. All the rest were young; some of whom had their children when they were teenagers.

Now I know that this is only a very small sampling but it gives me hope that just because we are older doesn’t necessarily mean that my wife and I caused our son’s disorders.

• There are more boys than girls that are diagnosed with disorders.

That was certainly proven here today. Of maybe 50 children only 3 were girls (soon to be 2 now that Max’s “girlfriend” is leaving).

After the program was over there were refreshments and raffles. Of course Max wanted to enter; he always expects to win. But he never does and is always disappointed. That means tantrum. Once the room had pretty much cleared out children were allowed to draw tickets to find the raffle winners. When it came to Max’s turn he stuck his hand in and at the principal’s suggestion swirled the tickets to mix them up a bit.

Lo and behold when he finally pulled a ticket out it had…Max’s name on it. And no, he didn’t palm his ticket so he could win. He was ecstatic! He won the baseball basket. Among other things it contained two baseballs signed by several of the Red Sox team players, a frosty drink mug, and a World Series guide. He had to show them to everyone in the school that would listen.

At 11:30 it was time to leave. We expected Max to pack up his things and head for the car. But he was disappointed; he wanted to stay. This was another big surprise for us. As I said earlier he always wants to go home with us. Today was different. He asked if he could go home at the usual time on the bus. We didn’t have a problem with that and neither did his teacher even though only one other student in her class was staying.

We sighed with relief and headed home. This meant we had an extra 3 hours to get some work done before he showed up. As we left we had to call his mentor and ask her to change her time back to 3:30 since he wouldn’t be home earlier.

And one last thing, we noticed that his teacher is pregnant. Apparently she will be going out on maternity leave in November. I think we now need to have a plan. We don’t want another year of Max potentially losing his grade level. This was happening this year until we moved him from 3rd grade to 5th.

This coming Monday is the last day of regular school. Max will be off for 4 days before he starts the summer program. It is time to do some scheduling.

Today we had a meeting with DMH (Department of Mental Health) about Max.  This is a quarterly occurrence.  It is a time we can get all of his services understanding what everyone else is working on with my son.

The ideal situation is to have everyone present but today only a few were able to make it.  These included our DMH social worker, the family therapist, the parent therapist, Max’s child advocate, and my wife and I.

The subjects discussed were:

• The advocate’s treatment plan

She has two goals that she has been working on with Max:

1. The first one is to teach him coping skills to prevent physical and verbal escalations and have him utilize them 90% of the time by the end of the year.

She has instituted a “check in” sheet for him to use to help him identify his emotions and whether he should be using the coping skills.  He will also use these skills to prevent escalations.

We have noticed that he has already been using some when he thinks of it.

2. The second one is to have Max demonstrate appropriate physical and verbal boundaries 90% of the time by the end of the year.

She wants Max to record and demonstrate physical and verbal boundaries with others.  This includes walking in on them when they are using the bathroom.

We haven’t seen much improvement with these yet.

• YMCA

We requested that they look into funding Max’s membership at our local YMCA.  We have been members for years and he is there on a regular basis taking classes, swimming, playing basketball one-on-one in the gym, and working out in the exercise area.  We’ve come to a point we cannot afford the membership even with the discount they have offered us.

This would be appropriate for DMH because they have been very happy with Max’s improvement based on all of the time he spends there so they are going to look in to it.

• Other programs

We have been looking into other programs for Max to help him out.  We asked if the group knew anything about them.  The parent therapist mentioned that she had had a client go through one of them and came out vastly improved.  That sounded like a recommendation to me so I requested that our social worker follow up on it.

• Horseback riding

Last year Max spent two weeks at a farm taking care of and riding horses.  He absolutely loved it.  We asked if the program would cover it again this year.  Since they send a lot of kids to it every year they had no problem scheduling him for it.

• Evaluation issue

An issue arose when the social worker commented that she knows that Max has ADHD and Bipolar Disorder but she was not convinced he has PDD or Asperger’s.  Why didn’t she believe this?  Because some of the reports never mention it including the most recent report from his psychiatrist.

We pointed out that at Max’s first evaluation he was diagnosed with both.  This was done when he was 4.  The special school that he is in did another one just last year and came up with the same answer.  Even so, there was some discussion on whether he should have another formal one.  No decision was made about it today.

I think the meeting went very well.  The only disappointment I had was that Max’s play therapist was not available.  I feel everyone is out of the loop when it comes to knowing exactly what he is doing with my son.  I know that they play together when he is here but outside of that I don’t know what the goals and objectives are or what the status is.

The important thing is the Department of Mental Health is there to help kids.  They have been able to put Max into several programs that have been helping him.  We have seen a lot of improvement in him since he starting working with all of these people.

And it is nice to know that we aren’t doing it alone.