Posts tagged ‘Disabilities’

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.

I had a crazy dream early this morning.  I was in a company parking lot looking for my car.  All of a sudden a man started running wildly through it; he appeared to be in his twenties.  He was attacking people at random but it didn’t appear like he was trying to hurt them.  It seemed more like he was trying to get himself noticed.

The problem was that he was hurting them and no matter how much we tried to tell him this he ignored us and kept on with his play.  It got so bad that someone called the police who arrived and took him into custody.  They stayed long enough to question us before dispersing everyone. Afterwards the police left and I found myself alone.

Well, not alone, it seemed like the man had been forgotten.  But he hadn’t stopped playing; he continued running around the parking lot.  Now you could see how much fun he was having.  He was laughing as he started smashing things in his path.  I pulled out my phone and called 911.  When it was answered I told them what was happening.  They were very interested and started asking me questions.  I answered that we needed the police and for some reason when they were here before they did not take him with them.  This surprised them and they questioned me some more.

All of a sudden I had to interrupt the conversation; the man was now lifting up windshield wipers and snapping them off as he moved from car to car.  I spoke to him several times but it was if he couldn’t even hear me.  He then started running up the street and yelling exuberantly.  I tried to get the people on the phone to commit to sending another police car but they were still interested in asking more questions.

“Are you awake?”

It was my wife coming into the bedroom.

“Um, yeah, ” I muttered.

“I’ve been up since 4:30 with that boy.  Can you take him now?  It’s 5:30.”

I struggled out of bed still groggy.  I went downstairs to find him watching a video on the computer a friend had sent him.  Max is 8 years old and has been diagnosed with, among other things: adhd, bipolar disorder, and asperger’s syndrome/pdd-nos.  He is also very high energy; but this is not surprising since each of these disorders includes this as a symptom.  And we never know when he is going to get up in the morning; it can be any time between 3 and 7:30.  But when he does we expect a wild time until his meds start working.  This can include screaming, swearing, smashing things, or just happily doing marathons in the house.  Coupled with the med change he is going through right now, this has led to some hectic times.

By the time I got up he was calm and enjoying the video.  When it was over we moved to the living room to watch a fun movie starring Jackie Chan called “The Forbidden Kingdom” before he got dressed and headed off to school.

The dream has stayed with me this morning; does it have a meaning?

Like this man, Max likes to:

• Get into people’s space.

• Smack his Mom in the butt as he passes or run at me and bounce off my stomach while saying “Fat Daddy!”

• Toss things around but doesn’t expect them to break.

• Be noticed.

• Ignore people when they are talking, as if he is deaf.

• Run exuberantly around the house or down the street while yelling.

It seems like that this man could be the future Max.  However, I was talking to Max’s therapist this morning and I told him the dream.  He says that, even though this could happen, we still have time to change things.  The frontal lobe in his brain is still forming.  In boys it doesn’t become fully developed until they are 25.  We, as parents, will be taught the skills we need by the therapist to help develop it.  We will do this by helping Max learn the coping skills he will need later on in life to survive in the world.

What is the frontal lobe?

It is the part of the brain that is at the front of the head.  Scientists believe it may control the personality, emotions, and long-term memory. If it is damaged at all it can affect problem-solving and reasoning abilities.  Disorders such as adhd and bipolar disorder appear to be symptoms of this problem.

Why is this where we concentrate our efforts?

It seems that very young healthy children learn problem-solving and reasoning through play; this in turns develops the frontal lobe.  However, this result may be inhibited in children with a disorder.  If we teach Max these skills it will help it mature more properly.

Will this cure him?

Probably not but if we do our jobs correctly then Max won’t become the man in my dream.  He will have learned to control the behaviors that can cause these outbursts.

How is this going to work?

Max’s training started several months ago with his therapist and child advocate, and we have seen some changes.  But this is our first day of training.  As we continue to learn and apply our new skills I will write more about how it is progressing.

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.

Sunday was mom’s birthday.   I’m not gonna tell you how old she is; she’d kill me if I tried.   It started out a great day but we were afraid that it was going to rain later on.   We were hoping to get the party well on its way before that happened; it was held at my sister’s house.  My wife and Max left to make the 45 minute trip up into New Hampshire so that he could spend time with his cousins before everyone else showed up.

On weekends my mother goes to my other sister’s house to take care of her.  My sister and I both have multiple sclerosis.   Mine is the “funny you don’t look sick” kind.  My sister is bad and continues to get worse.   She is in a wheelchair and must have Personal Care Attendants or PCAs available to help her on a daily basis.  She cannot get out of bed, dress herself, bathe, or use the bathroom without help.  One of the things she loves the most is to be placed on her scooter so she can tool around town in good weather and see her friends.

She has several pcas that work with her during the week.  As I mentioned Mom takes care of her on weekends.   I am generally the “pca on call”.  This means that if she has doctor’s or chiropractor appointments I’m generally the one that helps her get there.   If she’s got a party to go to who’s she gonna call?

Today my job was to travel an hour south to pick up both my mom and my sister and then drive them in the reverse direction an hour and a half to the party.  I’m glad to do it; Sis was my best friend when we were kids.   I can still remember when she was in kindergarten coming home to spend time with her 3 year old brother who would be lonely waiting for her all day. Now we are in our 50s and I can now be there for her.

When I got to her place she and mom were in the bathroom getting ready to go.  Uh oh, she has a new wide screen HDTV; man I’d love to have that!  I sat down to play with it while I was waiting for them.  I didn’t get enough time with it; I was called to help get her onto her chair.

Getting her out of the bathroom is nice now that the state rebuilt the door so it is wide enough to get the wheelchair through.  There are other things they did too such as putting in a new tub, handrails all over the house, and for me something else.  When we were ready to go I pushed her out over the new small ramp onto the back deck and then down the new long ramp on the side of the house to the driveway.  It is so much nicer now than when I would have to position a chair in the house and one in the drive and then carry her up and down the stairs.

I’m also always learning the best ways to help her.  Every time I see her she has a new way to lift her out of the chair and put her into the car.  Today she directed me how to do it.  Like always I position the chair close to the car and then remove the foot rests.  The next step is to move in front of her and stand with my legs on each side of hers.  I then squat a little and reach around behind her to grab the belt she wears underneath her clothes.  On a count of 3 I stand straight up bringing her with me and hold her close.  I spin and lower her onto the car seat.

Now comes the tricky part.  When I set her down she always ends up lying down with her feet still on the driveway.  I have to slide my arm under her armpit and lift her to a seated position.  Today was a little easier because mom climbed into the driver’s side and helped lift her.  Once she was seated I swung her legs into the car and we positioned her so she was comfortable.  Then I put the seat belt on her and threw the wheelchair into the trunk.

Once we were on the road mom took a nap in the back seat and we chatted on about different things.   She and I are both website developers so we talked about things we were working on.  She has not yet seen my blog so we talked about that as well.  The point is that while we are driving we are family and friends having a good conversation.  She does not have to worry about all of her problems, which is a good thing!

When we got to our sister’s house there was a mad rush of kids because grandma and sis were here!   And after that it was time to reverse the procedure by putting her back on the chair and then getting her into the house.  This time my brother-in-law and I had to lift the chair over the steps and inside.  The final stop was out on the back deck.  She spent the afternoon watching the kids swimming in the pool or playing games like hide-n-seek and tag with me.  She loves relaxing and seeing all of this.

My duties were over for the day.   If she needed bathroom breaks our sister took care of it.  Everyone helps her; even the kids brought her hot dogs and burgers.  And I can’t forget mom; this is her day after all.   We sang and brought out the cake. My 8 year old boy gave her a birthday card and grandma laughed when she found a dollar in it, “to spend any way that she’d like.”

The party was still going strong when my wife, Max, and I left.  That seems to be always the case.  When he starts getting tired he can act out like all kids do but his disorders tend to make him worse.  We find it best when it reaches 7:30 at night to make a nice relaxed retreat before anything happens.

I didn’t forget my mother and sister.  My brother and his family had arrived after we did and he stepped up to take them home.  So mom was ecstatic, it was the best time she had had with her family in a long time especially since she hadn’t had to worry about my sister.  She does that enough anyway.  And my sister had a wonderful time.   She doesn’t get to see her nieces and nephews very often and she misses them and it is gratifying to her to find they miss her too.

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.

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.