Posts for category ‘Special Needs’

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 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.

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.