Posts for category ‘Disabilities’

I’ve been talking about my son Max’s med changes lately.  I mentioned one of the side-effects of taking him off of his stimulants.  I touched upon his behavior a little bit too.  But I’ll tell you, we still have a way to go before he is off his ADHD meds but I wonder sometimes if we will live through it.

Parents with ADHD kids know what I’m talking about.

It seems like every day Max has been getting wilder and wilder.  He has been running around the house a lot; swinging his arms around kind of like airplane propellers, and yelling exuberantly.  Today he added something new…he has been smacking his Mom on the butt when he passes her.  As you can imagine she hasn’t been terrible thrilled by this.

I don’t want to discount the good things that have come out of this:

• Max hasn’t been as anxious as he was.

• Tantrums have been lasting minutes rather than hours.

• Swearing has been reduced.

• He still gets upset if Mom goes anywhere without him but within 5 minutes he goes on with other projects.  Before, he would be on the phone calling and begging her to come home.  She would end up turning off her cell.

• When he is angry he goes into his toy room, closes the door, and sits for awhile.  He used to scream and break things.

• He can be outside on his own for more than 3 seconds.

But this wildness can be unnerving.  Last night, for example, we went swimming in the YMCA pool.  He was like an octopus, climbing all over me constantly.  I kept peeling him off but he would come back and attach himself again.  Don’t get me wrong; I love being in the pool with him.  We generally play tag.  I toss him in the air so he can splash down into the water.  Sometimes I need to bend my leg like a chair seat so he can sit and fix his goggles when they get water in them.

This is different.  Imagine hands grabbing everywhere and legs wrapping themselves around yours.  Every time you take one off, it immediately finds another place to latch on to.  It feels like harassment and the more he does it the more built up I get.

When he is acting like this he cannot hear what is said to him.  Or he can, but the words are not part of his world at that moment.

“Max, stop it.”

“Okay, I’m sorry.”

“Max, stop it!”

“Oh yeah, sorry.”

“Max…”

And on it goes until I send him off into a corner.  Later I will sit with him and explain the problem.  He appears to get it but it isn’t long before he is at it again.  Someone asked me if I thought he might be afraid of swimming so he holds on.  Sorry but that doesn’t work.  He is 8 now and has been swimming since he was 6 months old.  He is more comfortable in the water than even I am and I’ve been swimming for close to 50 years.

I’m not really complaining.  I understand a little bit about what he is going through himself.  He doesn’t have control and he doesn’t know why.  He just knows he’s having fun and he’s confused about why other people, meaning his Dad, aren’t having fun too.

This is just another aspect of his med changes.  As he goes through it the more his Mom and I learn.  Just today I saw an interview with Curt Schilling, the former Red Sox pitcher, and his wife.  She just wrote a book about raising their son who has Asperger’s.  They showed a video of their boy playing soccer.  He was running and flapping his arms a lot like Max does.   They talked about the wonderful things they have learned as they deal with each day.  And as they said, some days are going to be harder than others.

And it is true.  Some days are so difficult as he struggles to deal with our responses to his actions.  But without my son I wouldn’t be doing half the things that I do like swim, mountain climb, run, bike ride.  The list is endless.  Oh, and the most important things like read with him, cuddle with him, and laugh with him.

As I sit here there is a rare moment of quiet.  Max is staring out of the window waiting for his ride to his afternoon program.  I’ve got to enjoy it while it lasts.  Nope, there it is:

“Where’s the ride???!!!”

He jumps up and down.

“Where is he??”

My son Max has been going through a medication change.  We haven’t completely cut out his stimulants yet; we have been trying to wean him off of them slowly at his psychiatrist’s recommendation.  When it is complete we will start working on balancing his bipolar meds.

As he comes off we have been seeing a lot of different changes with him.  For example:

• He has been very exuberant.  He laughs a lot now.

• He is finding more things exciting; he is enjoying life more.  It has been a lot fun taking him places.

• When he has a melt down it is easier  to separate himself from a situation so that he can calm down.

• Mornings before his meds have started working have not been nearly so stressful.

• He has been volunteering a lot more in school and in other places.

But with all of his joy we have seen more screaming, both bad and good.  Right now he can’t seem to do anything in moderation.  It’s either screaming with joy or screaming with anger.  He has to speed through every project.  We can’t go fast enough!

But Max has been finding so much more to do.  Two weeks ago we had a big storm; our basement was flooded.  He had to help me clean up.  He loves to clean!  This passed weekend there was a bigger storm. It started raining on Friday night and it is still going on Monday afternoon.  Luckily we were able to get a pump last time otherwise everything would probably be destroyed right now down there.

We haven’t gotten to the cleaning stage yet but he has been throwing on his rubber boots and splashing around in all of the water. I must admit I haven’t been as fun loving through this.  I haven’t been enjoying all the work:

“Max, stop all the splashing!”

“Okay, sorry Daddy.”  He would then try to tiptoe through the water but then:

“Max, I said stop all of the splashing!”

“Oh, I forgot.”  And again he would try to tiptoe.  I finally shut up; he’s just having fun.

His classroom results haven’t been the best at all right now though.  His teacher keeps telling us that he has to be spoken to a lot.  He can’t always settle down and get his work done.  Even though this is a special school they don’t seem to understand what he is going through.  Before he started coming off the stimulants Max was able to stay focused and get his work done.  Now he wants to do anything but his work.  The school is convinced he is not only trying to manipulate them but also after the big jump he took from third grade to fifth grade recently the work has been a lot harder for him.  Our response is that it wasn’t harder for him before the med changes and he was able to stay focused.

One final issue that I have noticed recently is the disrespect.  Last night he was sitting on the couch eating a bowl of ice cream while watching television.  In the process a few drops landed on a pillow and also on the cushion he was on.  I suggested he grab his napkin and wipe them up before they dried.  Rather than do it quickly he saluted me with both middle fingers and swore like a sailor.  I just shrugged and shut off the TV.  This really set him off and he left the room; but not before kicking me in the shin.

It took only a split second for me to wipe up the few drops.  As my wife said, at this time of day there was no way he was going to focus long enough to do it himself.  Perhaps not but the reaction was uncalled for.  He stayed in his toy room for a time out while throwing a couple of toys and continuing to swear.  When he was done letting off steam he was able to come out and apologize for his reactions.

Our first step in dealing with school and the disrespect is going to be to talk to his psychiatrist.  We want to know if:

• we should continue his med changes during the school year or should we wait until summer so that his work doesn’t suffer.

• will regular discipline resolve the disrespect that has been surfacing during this process.

Recently  I wrote a post about the new show “Parenthood”.  On the most recent episode we find the dad learning to accept some of his son’s issues.  Some parents may recognize this one, my wife and I certainly do.  The boy likes to wear costumes to school; in this particular case he was a pirate.  At first dad was adamant that he change into regular clothes but by the end of the show he was dressing as a pirate too.  “Avast ye lubber.  Get out ye sword and fight me!”

With all of the things Max is going through right now he doesn’t need his school and his dad sniping at him as he tries to adjust.  I think it is time we both dress as pirates and get into his world a little bit.

I stopped at my Mom’s this morning.  As usual she had a lot of suitcases for me; I left with over a dozen of them.  Ever since she heard about this organization, Suitcases 4 Kids, she has made it one of her missions to collect as many as she can find.  I pick up 4 or 5 whenever I stop in.  Today was the mother lode!

Why does she have so much interest?  The organization’s goal is to supply suitcases for the 510,000 children that are in the foster care system in the United States.  These are the kids who are constantly on the move from hospital, to foster home, to group home, and hopefully to a family that keeps them.  And they move with all of their belongings stuffed into garbage bags. This is their life.  Suitcases help to boost their self esteem; they are not throw away kids!

Mom finds it amazing that there are so many children like this; and this number doesn’t include those that are homeless.  In her day these kids would have been absorbed into their families  She herself had several cousins that grew up with her when their parents could not take care of them anymore.  As a result I also had cousins living with us when I was growing up.

There was a time when families could do this.  Hillary Clinton once said that “it takes a village to raise a child”.  In those days  people could take care of their own.  Grandparents, parents, and children lived in the same home.  Uncles, aunts, and cousins lived next door and down the street.  Today no one lives close.  I have two friends that live in Massachusetts but each has family in California; a lot of my wife’s relatives are in Canada.

So where do these children go?  To state facilities; as more and more families break apart more buildings spring up to take care of them.  Just today Mom was telling me that her town is trying to build a small mental hospital just a couple of doors from her house.  The neighbors are up in arms about this and they are trying to fight it.  So again, where will these kids go?

The interesting thing is that this hospital will replace several Section 8 houses that no one even knew were there until now.  These are government-sponsored affordable homes for low-income families and individuals.  The neighbors are using horror stories that they’ve heard about these homes to try to stifle the hospital.  They are fighting to keep these places even though they hate what they’ve heard.  As I said to my mother, “they want to keep the devil they know rather than the devil they don’t.”  I don’t know who originally said this but it really fits here.  But don’t get me wrong I am not saying I believe the hospital is bad; the neighbors are afraid their property values will go down.  Apparently this is more important than our kids!

On a side note, Eunice Kennedy Shriver just died.  Today the Kennedys are having a public wake on Cape Cod today.  No matter what people’s personal or political thoughts are about them no one can deny that the Kennedys have done a lot for the disabled, homeless, and other disadvantaged people.  For example, Eunice started Special Olympics in her back yard.  Maria Shriver, besides being the First Lady of California works with Alzheimer’s.  Caroline Kennedy works with the homeless.  Ted Kennedy has sponsored many bills to help the disabled.

And now we have this small foundation, Suitcases 4 Kids who is looking to help foster care children as much as possible.  They would like new or lightly used suitcases, backpacks, and duffel bags.  Every day in her travels my Mom keeps looking.

If you have any please don’t hesitate to help these kids out.  The website gives locations where to send them.  Mom has it easy, she finds them and loads them into my car, and then lets me worry about how to get them to the foundation.

Sometimes I wonder who my kid is.  Max is a major hoarder, like his parents.  I swear he has the first gift he ever got.  You know what?  He does!   The day he was born I gave him a baby sized soccer ball.  It is still in the garage after 8 years.  A short time ago I wrote about how he wanted a new bike and one of the conditions was to clean the garage.  He did it with gusto!

Soon after that he took it into his head to clean up the sold waste dump otherwise known as his bedroom.   Like the garage some of the stuff he threw away, others he donated.  We can now breathe when we walk into it though it is not completely cleaned out.

There is another room all his; it is his toy room.  It was piled from floor to ceiling with toys, junk, books, junk, videos, junk, games, and just plain junk!  We had talked for months about cleaning it up and making it a room he could enjoy but nothing was happening.  Finally we sat him down and made a suggestion.  Get rid of only 10 items a day.   They can be large or small and he can throw them away or donate them.  For each item he got rid of we would give him a sticker.  Once he collected 70 stickers he would get a prize.  No, not something that would take up more space; perhaps a trip to Chucky Cheese’s or something similar.

He jumped at the idea.  So much so he was getting rid of more than 10 items a day.  He understood anything over that number would get him a bonus sticker but he would still have to get rid of 10 a day (no rollover points).  He completed his 70 items in a week and chose to go to Chucky’s.  I think his goal was just to get rid of everything and get the stickers because he spent only 30 minutes at the place.

Is the room spotless?  No, it looks like nothing has been done.   If, however, you saw everything he had thrown away you would have thought the room must be clean.

Since he got his 70 stickers is he done?  No way!  He came up with a novel way to clean it.  He is having shopping sprees.  Twice his buddy Bobby has been over and each time Max allows him to load up his backpack with as many toys as he can grab within a certain time limit.  Max keeps having to make the limit longer and longer because Bobby is s-o s-l-o-w!  It doesn’t seem a lot is happening this way but my wife and I are wondering how his Mom is going to react to all the stuff being transported to his house.

I really don’t know my kid.  What happened to all the hoarding?  I do know his goal is to convert the toy room into an amazing room he saw in a furniture catalog.  It is all spotless and clean.  There are places to play and to read. And there isn’t any clutter.

Even though he has been into cleaning lately he “falls off the wagon” sometimes. Both the garage and his bedroom are starting to get cluttered again.  To keep his cleanliness habit we are going to have to keep after him to throw out his trash.  His ocd seems to swing like a pendulum from hoarding to cleaning.

Right now he is getting really hyper.  Bobby’s 60 seconds has stretched into a half an hour and he is still s-l-o-w-l-y finding things.   But Max is bouncing off the walls waiting for him. Anything he picks up gets thrown down immediately.   He tried to change a battery in one of his toys and it turned out he didn’t have a replacement…meltdown.  I don’t know how much more cleaning will happen today.

Once he is finally completed he will have to convert his parents so that they become recovering hoarders too.

My son Max is 8 years old. He loves to go to school because there are always things for him to do. It is a very structured environment, which he needs. His anxiety levels skyrocket if nothing is scheduled for him. When that happens his disorders activate; he has odd, bipolar disorder, pdd/nos, and adhd.

Weekends can be tough because we don’t always have something for him to do. Max has a lot of energy so it can take him minutes or even seconds to get through the things he thinks of doing. Then he spends a lot of time moping around the house getting very bored and very miserable. Being at home is not a very happy time for him.

This passed Sunday turned out to be a very exciting day. I have rarely seen him so happy. It started out as a pretty standard weekend day. He woke up at 5 in the morning and went through his morning wildness before his medications started working. But it seemed that he got bored very quickly this morning.

“What are we going to do today?”

“Where are we going to go?”

“Who can I play with?”

And he was starting to whine and hound us; a typical weekend day.

At 7 o’clock I called him over. “Max, I’m going raspberry picking, are you coming with me?” “I dunno.” “Well, I’ll be in the car. If you want to come then join me.” Guess what, he went with me. He wasn’t sure he wanted to; he dragged his feet getting out there; but he went.

It was only 7:15 when we arrived at the farm. As I pulled into the parking lot his anxiety kicked in. “It’s too early. It is still closed.” I reassured him that it had been open for 15 minutes already. After all, I told him, it is a farm; they’ve probably been working since 5 o’clock. And it was. We went into the store and were directed to the raspberries a quarter of a mile walk in back of the fields.

When we got there we bought a little bucket from a girl in a hut. She then pointed out the best pickings for us. Max was a little tentative at first pulling the juicy red raspberries off of the bushes but he soon got into the swing of things and started filling the bucket. Of course, he had to try a couple as we went along. We also found some black raspberries which topped off the pail nicely.

When we were done we spent some time in the farm playground and visited their petting zoo. After that we each had one of their apple cider donuts while watching the geese splash in the pond.

You would think that after all of this it would be lunch time. Hardly, it’s only 8:30. From here we did some hiking. There is a hill close to our house in the middle of a forest. It is very steep and it’s a lot of exercise getting to the top. Max ran most of the way; I was crawling by the end. It took a half hour to get to the top and then back to the car.

From here we decided to get some breakfast at a restaurant on the grounds of a small airport near us. Max had sausage and some apple juice. It was a beautiful day so we got to see a lot of planes flying.

We got home at 10 o’clock. This worked out for us because, what we hadn’t told Max, we were leaving to go to a barbeque at 10:30. While we were away my wife had spent the morning putting together the food we were bringing and packing other essentials. We arrived at the party at 11:30. Our hosts own a house on a lake in New Hampshire. Max’s eyes lit up when he saw it and he immediately went from the car to the water.

I won’t spend a lot of time writing about everything Max did today but he swam for a long time. He then went out on both a pedal boat and a kayak several times during the afternoon. He also paddled around this side of the lake on a rubber tire. There were three girls his age at the party and they joined in everything he was doing. The one thing they didn’t want any part of were the large spiders he found underneath a floating dock. And he ate hotdogs, corn chips, brownies, and cookies; anyone that knows him will be surprised to hear this. He doesn’t usually eat very much and rarely touches sweets.

We had planned on leaving the party at 3 but Max was having so much fun that we ended up staying until 8 o’clock. And after this long day he slept the hour home and I carried him to bed.

As I said earlier, this was a very exciting day for him. He didn’t have any time to even think about being miserable. It was wonderful to see. Most parents don’t like to see their kids unhappy; our kid may be unhappier than most of them. He doesn’t have too many friends; the ones he has don’t want to see him often because of the way he acts. His dad is in his 50s and has multiple sclerosis so he doesn’t have a lot of energy to do things with him. He is very anxious and it bothers him that he has to take medications for each of his problems.

Today was an amazing day for him; he fell asleep excited. This is the kind of day my wife and I treasure. Hmmm, I wonder if we can have a couple more of these before the end of the summer.

I read a wonderful post on respect over the weekend. How do we treat our children? Yes, I know we are the parents; we “know” what’s best for them and they must listen to us. Okay, maybe we do but how do we get it across to them?

Do we treat them with respect both at home and in public as we try to discipline them? Or do we yell and scream at them, humiliate them, maybe even swat their butts…especially when people are around watching us. Too many parents feel those eyes as their child is misbehaving and consciously or subconsciously feel the need to get the upper hand quickly; perhaps to show that they are “good” parents.

As a result our children can end up feeling like a nobody. They can not only lose respect for themselves but also for their parents. Have you noticed how they can stop listening to us? Sometimes it is almost like we aren’t in the room even though we are standing over them.

“How crude can we be at times in our conduct with our children. We’ll scold them in the middle of everyone in the party. We’ll drag them in the mall. Worse, we’ll nonchalantly criticize them in a group using words like ‘fussy’, ‘irritable’, and ‘stubborn’ in their presence.”

I don’t know how you were raised but can you remember back what it was like as a young child looking up at your parents towering over you? And being angry with you? Perhaps yelling at you? And what about those other parents watching everything that is happening? How did it make you feel?

Respect has been in my mind a lot lately. I’ve been wondering if we are treating our son well. Max is 8 years old; he has been diagnosed with bipolar disorder, adhd, odd, pdd/nos, and ocd. Both in public and private he can become very explosive if things aren’t going his way. Our rule is that if this happens publically we cannot go back to that location for awhile. But we tend to do more than that, especially if we are exhausted by all of the daily drama.

Just before I read the post above Max and I had gone to the movies. We saw the “Night At The Museum” sequel. He had already seen it once and couldn’t wait to go again. After I bought the tickets he suddenly realized he had wanted to see the new movie “Up in Disney Digital 3D“. He had a meltdown. My response was to tell him if he didn’t want to see the museum movie he could go sit in the corner and wait until I was done watching it. And I said this in front of a lot of other people.

He did go to the movie and he did enjoy it but it set the tone for the rest of the day. Everything he did was wrong…mostly by his standards not ours. If he spilled something he would get upset with himself. If we tried to comfort him he would turn his anger on us.

Most people treat others respectfully. Even if you are angry with a friend or coworker would you scream at them? Or would you find a better way to get your message across so there won’t be a lot of upset? But as mentioned in the article we don’t treat our children the same way as we do other people. Not only that we expect them to be “adult” about it, that is, “take it like a man”. We also expect them to learn from us. And they do; they learn to treat their children the same way. In some cases their spirits may even get broken.

My eyes were really opened after reading this article. I love my son and I don’t want him feeling any worse about himself. He already feels badly considering the way his disabilities make him feel.

I hope other people can recognize a little of themselves too and perhaps make some changes in how they react to their kids.

Hey parents, you know the drill. It is the end of the school year. Time for the field trips. How many of your kids are going to spend a day at an amusement park with their classmates?

Last Monday my son Max’s van picked him up as usual and took him to school. The kids were there long enough to check in and then the whole school went off to Canobie Lake Park in New Hampshire. My wife and I met them at the park; hooray for me, we are chaperones today. I’ll get to ride on some rides!

It started out with a nice surprise. Because all these kids have disabilities they got special wrist bands that allowed them to jump the lines. The purpose of this is to help these kids who have zero tolerance when it comes to being patient. With the bands they go in the exit, get a choice of seats and then are allowed to ride twice before moving on to the next ride.

There are 7 kids in Max’s class; my wife and I took him and his buddy Bobby with us, the rest went with the two teachers. As we walked through the park they set their sights on a ride called “The Corkscrew”. It is one of those new wave roller coasters. It is not very long but it is very fast; and you can guess by its name that one section spirals like a corkscrew so there are moments when you are whipped upside down and side to side. I haven’t had the urge to try this one yet.

The boys, not understanding the wrist bands, got in line first. They moved up the ramp and inside the waiting area too quickly for us to stop them. Are you kidding Max was too excited; this was the first time he was tall enough to go on this ride. Once inside we lost track of them and we had to wait for what seemed like a half an hour (it was probably only ten minutes) before they were on the car and finished the ride. Now we were able to explain the use of the bands and sent them through the exit for their second ride. When they came out they were in heaven; best ride they had ever been on! (Actually it was only the first today.)

This time Max and Bobby had a difference of opinion on which would be the next ride. Max went in one direction and his friend disappeared. We were frantic for several minutes before we found him in line for a ride which was around the corner and down the block. We had to speak to him severely because he just couldn’t understand the problem; so he disappeared, so what? And we told him “so what”. He was our responsibility and if he couldn’t stick with us he would have to go back with the rest of the class.

Once that was out of the way they settled on their next ride. You’ll notice a pattern during the day; even though they are only 8 years old there would be no kiddie rides for them, they wanted the biggest and scariest ones. “The Boston Tea Party” was next. It was based on “The Log Flume” which we got later. It was a long log that sat at least 10 people and worked like a roller coaster. It travels up a high ramp before circling around and dropping down a very steep chute into a “river” of water. Everyone got soaked, the riders and even the spectators. When the boys came out they were sopping wet and because we didn’t have towels they had to air dry.

They continued to ride the crazy rides and because I was a chaperone I had to watch and make sure they were okay. This meant no riding! I was itching to get on the rides and feeling frustrated just walking around the park. The worst part of it was when they chose to ride “The Yankee Cannonball”. This is one of those large old wooden rollercoasters and it is fun. No it doesn’t have any track that goes upside down but it is at least 4 times longer than “The Corkscrew” and it has several peaks and valleys. It is enough to give you a lot of jolts…and it is my favorite ride in the park. I got to watch them ride it twice!

At one thirty Bobby and his class go back to school but Max stayed with us. This was what I was waiting for; Max won’t ride by himself he has to drag his dear old dad along with him. (Read BIG smile on my face!) What does he want to ride first? It is his dad’s favorite “The Yankee Cannonball”. It was more bone jarring than I had remembered. I found that I had to brace myself slightly off the seat as we shot down into the valleys, otherwise I would get tossed around like a rag doll. And my boy was sitting along beside me as I rode!

When it was over the attendant leaned over and asked Max if he wanted to continue. Can you guess the answer? After the second time I felt like I had just gotten off one of those astronaut centrifuges. I had to check to make sure my hair wasn’t standing on end. Shucks, it wasn’t…where’s the next ride.

Max chose “The Log Flume”. This is a smaller version of “The Boston Tea Party”; our “log” has 2 seats which will take 4 people but it was just the 2 of us today. With Max up in front and me behind him in the first seat we floated down a river and went up and down some small hills. It gave us the impression we were on a nice relaxing kiddie ride but watch out! It had a ramp just like the other one but in this case at the top there was a photographer taking pictures. When we reached him I had a change of heart, “I want to get off!” He smiled, “too late” he said as we sailed off the edge. It was a blast and I had had no intention of getting off!

When it was finally time to go home we hopped on the Ferris Wheel which was next to the exit. As we got to the top Max turned to me and told me a secret, he is afraid of heights. This was a surprise, I hadn’t realized any of this stuff bothered him. He bit his nails while we went around and around. I tried taking his mind off it by pointing at the tops of the trees which were below us. “Oh wait I can see our car in the parking lot, see that tiny thing over there?”

In the end nothing I said calmed him…I can’t understand why. When we got off he was more than ready to say goodbye to the park. But one thing we have found is that all of this excitement tends to rev him up and it is several hours before he calms down enough to stop ricocheting off the walls. He did go to sleep early that night which was great for us since my wife and I were exhausted.

And oh by the way, I bet you thought I was talking about Max or Bobby when I named this post “The Daredevil”. Nope, it was about this 53 year old guy with multiple sclerosis who really feels like he is 8 years old again when he is with his son.

Just got back from my son’s “graduation”. As most parents know it is not a real graduation; kids now take part in these end of the school year celebrations as they get promoted to the next level. My son, Max, is now going into the third grade, and sixth grade reading. Yep, they tell me he is an excellent reader. Could have fooled me; he never cracks a book at home.

It was a nice ceremony which was held in the gym/auditorium/cafeteria; and lots of cakes for me to enjoy afterwards. Kids got their grade certificates and awards for different things. My little engineer got an award for all the awesome things he can make with paper, cardboard, staples, and duct tape. His teacher told us that just yesterday he made an electric guitar and amplifier for the band he and his classmates put together. He has it in his head that he is going to the Massachusetts Institute of Technology (MIT) after high school.

This is a special school for kids like Max who have disorders such as bpd, odd, ocd, autism, etc. He gets picked up by a van that takes him to the school a hour away every day. Unlike regular schools these know how to handle him. In the local schools Max was always being suspended because he never could handle transitions well. He would have an outburst and four teachers would tackle him to hold him down. The same boy my 5’4″, 113 lbs disabled wife can settle down without all the extra artillery.

This school has a “quiet” room; kids that cannot control themselves spend time in there. In a year and a half Max has never been in that room. He does have bad days but he doesn’t ever want to spend time in there so he controls himself. Just today his teacher was telling us that she knows when he is angry with her because he will seethe but he won’t yell, scream, or get physical. She says she tells him that it is alright for him to be angry but she is proud of him for not expressing it. And as my wife says, he saves it until he gets home. We get the brunt of it.

Other kids have different issues and do spend time in that room; lots of it.

Then there are the kids that we can’t read. One little girl goes to school with Max on the same van. She seems very sweet. She calls me daddy and my wife mummy. She would love to spend time at our house and she is always hugging my wife. We don’t know what her issues are though she apparently doesn’t have parents and lives in a group home. My wife would adopt her in a minute but because she is disabled and Max has so many issues it would be difficult to take on another child.

And then there is Bobby, Max’s best friend. We haven’t figured out why he is there yet. He comes across as very easy going. Even when Max is having a melt down he will look at him and say “cut it out”; then one of two things happens. Max will either calm down or will accelerate. If he explodes Bobby doesn’t know what to do about it except ask to go home.

The boys love to play at our house. Bobby lives in an apartment complex for seniors that consists of just buildings and parking lots, no play areas. If Max goes there they spend all their time in the living room watching television. We dropped him off last night at dinnertime and he was calling us to come get him before we had even gotten home.

We are thinking that on top of everything else he might be claustrophobic. It is a small apartment and very dark. They keep the shades drawn and it smells of stale tobacco smoke. They can’t make any noise because they are the only kids in this huge apartment complex which is strictly for elderly folks. Generally there isn’t any supervision. Bobby’s mom works constantly and his stepdad just locks himself in his room and leaves the boys to their own devices, that is, the TV. At least at our house they can be outside and free.

So back at the graduation, there were lots of kids with a lot of disorders. I’ve heard complaints that some of these schools are spending so much time managing the disorders they really don’t have time to keep the kids up to their grade level. Parents definitely have to keep an eye on what is happening and make sure their kids are getting what they need. Max will be starting the MCAS training in third grade so we will be able to see if his school is keeping up.

But today all you could see were happy and excited children. It was a fun time and yes, dad ate a lot of those cakes. Don’t tell my wife!

My Dad was a school teacher.  He started out in kindergarten and over the years worked his way upwards until he reached twelfth grade.  He got along well with the students but most especially with a young boy who was retarded.  As he grew Ryan never progressed beyond the sixth grade level.  He was in my dad’s kindergarten class and actually moved through the grades with him.

After about twenty years of teaching dad went on to other things.  Ryan kept in touch and would call regularly.  In fact many times in my teenage years and into my twenties I would answer the phone and end up having long conversations with him.  Most often he only wanted to talk about what a great man and friend my dad was.  I had no problem listening to all of that.  By this time he was in his late thirties and early forties; but even with a man’s voice he spoke like a child.

On a regular basis Ryan would take the train in to my dad’s office and they would go to lunch.  Dad always made time for him.  His own kids weren’t jealous; he did the same for us too.

I don’t really know what Ryan’s home life was like.  I only know that his dad had died and it was just his mom who took care of him.  What did he do when he wasn’t visiting my dad?  I never found out.  He was kind of like a distant relative that never came to visit.

Then one day he called and my mom answered the phone.  He was crying and wanted to speak to my dad.

He said, “I want to tell him I just lost one of my two best friends.  My mom just died.”

Mom hesitated a minute before telling him, “I’m sorry Ryan but…Mr Corr died last week.”  Ryan never called again.

I’ve thought about it a lot over the past twenty five years since my dad died.  What happened to Ryan?  He lost his two best friends inside of a week.  Where did he go?  What did he do?

5MinSpecNeeds asked in Twitter “Do you worry about what will happen to your child with special needs after you are gone?”

A close friend used to worry about that.  Not about his kids, they are healthy and happy moms now.  He worried about children with special needs.  He worried about his sisters.  One has multiple sclerosis and is now living in a nursing home.  The other was severely brain damaged in a car accident when she was 16.  Mentally she is still 16 even though she is in her late fifties.

He had been a successful restaurant owner before walking away to start a financial planning firm specializing in helping children and adults with disabilities.  He was instrumental in setting up over a dozen charities and putting together events to raise money to help.  And he worked with companies to develop products to help families take care of their loved ones with special needs.

As a financial planner his goal was to set up programs to allow his clients to learn and grow every day.  He would also put together contingency plans for them if their caregivers could not support them anymore for whatever reason.

Sadly, he died when he was 54 after living with diabetes for years; but he left many children and his sisters with the support they needed once their parents were gone.

We can’t leave things to chance.  We never know what is going to happen.  I still think of Ryan and wonder if he got the support he needed when his two best friends died.

In a previous post I introduced my friend Rob.  He is a recovering alcoholic who a doctor discovered had bipolar disorder and had been self medicating with alcohol and drugs for years.  He started drinking at 12 years old and is now in his mid forties.

Though his new medications for his disorder had been helping him I ended that last post saying that he was back in the hospital again.  I said I didn’t know when he was coming out but when he did I hoped that he would finally be able to accomplish his goals.

He lasted in the hospital for maybe two weeks and then checked himself out.  I didn’t know you could do that when you are going through a detox program but apparently you can.

The big question is: Why did he leave early?  I thought initially it was because he was either fed up with being in all these detox centers over the years or he had done something that caused him to be kicked out.  But it turns out that neither is the case.  Apparently he has been in contact with a woman through email that he has never met.  She was originally involved with a friend of his who had moved out west.

She and the friend had broken up and Rob decided to correspond with her.  They have spoken on the phone and swapped pictures but as yet have never met.  It has been perhaps a month now and the two of them have decided to move in together.  He bought a plane ticket and will be flying out there this Wednesday.

Since he left detox he has been living with his parents in a cramped two room apartment.  When he went into the hospital he lost the place he was living in.  Last week he and I drove down to where he was living and picked up his belongings.  We then stuffed his clothes, an air conditioner, and a bike, among other things, into his parents’ place.

During the ride I planned on talking to him about his trip.  He is throwing everything away: his schooling, his sponsor, his friends, and his family for a woman he has never met.  Before I could bring up the subject though he got very angry about some very innocuous thing and I thought he was going to become violent.  I decided not to bring up the subject.

This passed Saturday I had breakfast with his dad who has been a recovering alcoholic for 37 years.  I asked him why his son hadn’t joined us.  It seems Rob was asleep on the couch when dad left.  He shook his head; Rob is drinking again.  He said that before Rob got his bike his dad had some control over what he was doing.  I’m not sure how much control he had; his son is 47 years old after all.  The drinking became more pronounced when the bike showed up.  Now he is able to get to package stores and pick up bottles whenever he wants to.  Rob doesn’t have a driver’s license.

His dad made a sad comment, “His plane leaves on Wednesday.  I can’t wait for him to be gone.  I hope he never comes back.”

Does he mean this?  I can’t speak for him but I don’t think so.  Dad has worked hard for so many years to help his son.  He even opened his apartment up to him when Rob left the hospital.  And Dad understands the disease since he has it himself.

Rob’s sister is another story.  She is very angry with him for drinking again and doesn’t want anything more to do with him.  She cannot understand why Rob is unable to stop.  Perhaps she thinks it was easy for her dad to stop so it should be just as easy for her brother.  I don’t know but I know she has written him off.

I wish him well with his new woman and whatever he does with his alcohol.  I know I’ll miss him and my 8 year old son Max will miss him too; they are buddies.