Posts in month: April, 2009

I read a story about ordinary heroes today.  These are people just like us that are unexpectedly thrust into extraordinary situations.  It centered around two men, Captain Richard Phillips and Captain C.B. “Sully” Sullenberger.

You will remember Phillips was the captain of the ship that was hijacked by pirates off the coast of Somalia.  He ended up exchanging himself for the lives of his crew and was later rescued by the US Navy.  And Sullenberger was the pilot that ditched his plane into the Hudson River saving the lives of 155 people.

When asked about their heroism, Sullenberger’s response: “We were only doing our jobs”; Phillips prefers to talk about his real heroes, the Navy Seals that rescued him.

To me this is one of the marks of a true hero, self-effacing people who would rather get on with their jobs than receive praise and glory for their acts of heroism.

Captains Phillips and Sullenberger are true icons and men we can learn from and they highlight the fact that there are true every day heroes among us, people that are just like us, people that we meet every day.

Parents and caregivers of adults and children that have physical and/or mental disabilities are heroes.  These men and women continue to do what they need to to meet the needs of their loved ones.  The mother who fights to make sure her daughter gets the proper services from schools, hospitals, and communities that she deserves.  The father who makes the hard decision to admit his out of control son to a hospital then stays through the night to make sure his boy is taken care of.  The woman who spends most of her free time caring for a neighbor who is incapable of caring for himself as a result of brain cancer.

And don’t forget the disabled.  They push passed their disabilities every day to make a good life for themselves and for others.  There is the woman, crippled by multiple sclerosis, who continues to develop websites for organizations devoted to helping the sick and needy.  And there are the children who struggle to be like so called “normal” kids by taking their medications and going to school all the while knowing they aren’t “normal”.

My son is one of my heroes.  He is 8 years old and has been diagnosed with bipolar disorder, adhd, odd, ocd, pdd/nos, and he is very explosive.  He hates that he is this way and he continues to look for ways to stop being so angry.  But through it all he tries to find humor in life and help other people.

Last week Max was finishing up breakfast when he suddenly jumped up and yelled “the van is here, I’m not dressed yet!” and ran out of the room.  My wife and I looked at each other in surprise even as we heard the beep, beep, beep sound the van makes when it is backing into our driveway.  How did we get so late this morning?  As we ran to the door it dawned on us at about the same time…why would the van be here today, this is vacation week?

We looked out the window and, of course, there was no van in the driveway, a truck was backing up down the street.  Max was in the living room stifling laughter.  He had gotten us!!

Last night Max and I went to his club meeting.  During game time the kids were broken up into teams for competition.  Max and his buddy huddled up to plan strategy.  I called across the room to remind the both of them that they had another teammate.  Both looked around and saw Albert standing in a corner.  I don’t know his condition but he appears to be autistic.  I have seen him at meetings but he never joins in preferring to stay at his mother’s side.

Max and Mikey went right over to him, took his hands and brought him back to huddle with them.  All bent with their heads together.  While Mikey’s and Max’s hands were on each of their shoulders, Albert’s hands hung limply by his hands.  At the same moment both Max and Mikey reached down, took his hands and placed them on their shoulders.  Then they made their plans.

When the game started Albert actually joined in for the first time.  He grabbed some packages, ran down to the other side of the room, dropped them in the correct pile, ran back to the beginning and waited for the others to finish.  Tonight he was a teammate, not the kid that hangs around Mom.  Even Mom was happy.

All three boys came through in the clutch, I didn’t need to pressure them into doing what they did, they did it instinctively.

Phillips and Sullenberger will continue to be my heroes but so will others.

Max and Mikey are also my heroes.

Who are yours?

More stories on the news this morning about the swine flu epidemic. One story caught my eye (and ear). A town about a half hour or so away from me was waiting on test results for two sick children, brother and sister about 8 years old, that have just gotten back from Mexico.

The town right next to me is also waiting with bated breath. If the kids do have swine flu this town plans on closing its schools. Not because of worry or hysteria but because the schools in both towns just completed a program together. Both children had participated after getting sick. The closings will be more precautionary until it is determined if any child locally also come down with it.

Just like any flu, this one is contracted by coming in contact with someone that has it or items that they have used. We’ve been hearing that some of the ways to help prevent catching it is to wash our hands frequently and not touch our face and eyes unless having washed. Masks are a third way; we can see Mexicans on the news using them as they go to work, shop, or do anything else that brings them in contact with other people.

It got me to thinking. We are having an explosion in physical and mental disabilities. Autism, for example, has gone from 1 in 10,000 in 1990 to 1 in 100 today. I don’t think that shaking hands and passing germs back and forth will necessarily cause bipolar disorder, autism, or any number of other disabilities (unless there is some kind of bacteria that interferes with brain function). And yes, our tests are more sophisticated so that we can recognize issues in more people.

But what is causing these issues? In the last 50 years there has been a major increase in the amount of contaminants we have put into our atmosphere. It is believed by a lot of scientists that these are contributing to global warming. I never hear what these could be doing to our bodies as well.

Also in the last 50 years the ingredients in our food have changed. There are a lot more chemicals and a lot more sugars (high fructose corn syrup) being introduced. At the very least we are becoming more obese.

My son cannot eat or drink anything with red dye in it because he will become very explosive within minutes of having it. There is something there that is affecting his brain.

There is a theory that ticks can cause CFS and as an extension, that mothers with CFS can pass the infection on to their unborn children affecting their brain development.

There may be many other possibilities too. I haven’t seen any studies to see how these could relate to the explosion of disabilities we are seeing. Sure there have been short term ones that seem to prove that nothing known causes these problems. But what about long term studies? During the Vietnam War the chemical known as Agent Orange was found not to cause any of the medical problems that the soldiers and veterans were having. Yet after a lot of years we are getting different results.

And if we were doing 30-50 year studies instead of 1-2 year studies might we find something more?

It seems to me that 20% of the population having a disability (according to NIH) is a high number.

What is causing all of this? What are your thoughts?

My wife and I watched the movie Fireproof the other night.  I expected it to be a movie about firefighters and their stories.  I have liked firehouses and fire engines ever since my Grandfather took me for a ride on the hook and ladder truck.  In those days it had a seat and steering wheel on the back and I got to steer whenever we went around corners.  I was 3 at the time.  Today my son and I spend alot of time exploring firehouses and it helps that my cousin is a fireman.

But back to the movie.  Yes, it did have a few stories about firemen battling blazes but it actually centered on the fire captain and his marital problems.  In fact his wife served him with divorce papers towards the beginning and the rest of the movie showed the captain going through his personal fire to save his marriage.

His dad gave him a book called “The Love Dare“.  It contains 40 days of projects designed to improve a marriage, even ones that are at the breaking point.  The captain had to commit to following the program if he hoped to succeed.

While watching the movie I saw a lot of the captain in me.  Like me he was frustrated with the way he saw his wife treating him.  Like me he was getting angry more and more and was actually thinking about ways out of the marriage.  Fed up with the situation his wife wanted out too.

My wife may feel that way too.

The movie scared me.

We all know the statistics.  In the United States 1 out of 2 marriages end in divorce.  The number one problem is money.

But what most people don’t know is that the divorce rate among parents of special needs children is much higher.  In this case the problems center on the care and raising of these kids.

So here I was identifying with this captain who doesn’t have children and I have one with issues such as bipolar disorder, pdd/nos, and odd.  It has been a struggle raising him and my wife and I are always short tempered.

The day after I saw the movie I searched the internet and discovered that “The Love Dare“  actually exists.  My son and I went to Borders but I couldn’t find the book.  The girl at the information booth went to several different locations and was also unable to find it.  She informed me it is a very popular book and has been flying off the shelves.  She suggested I come back in a few days. Not what I wanted to hear, I wanted to start immediately!

As I was walking out of the store she caught up to me.  She had found a copy in the return section.  I bought it and after reading the introduction I knew it is going to be hard and is going to take a lot of commitment.

I would like to suggested to other parents of special needs kids who may be feeling the strain of raising them (or not) to consider getting this book or finding some other way to strengthen their marriage (even if it is a good one).

But I called this blog “Fireproofing the Family” not “Fireproofing Your Marriage”.  Think about it, kids get escalated when their parents are escalated and that is when all the junk will hit the fan.  These kids don’t need more issues than they have already.  Parental problems don’t help them learn how to deal with their own problems because the parents aren’t dealing with them.

Strengthening the marriage is the first step in helping these kids strengthen themselves!

As I work on the book I will write blogs about my discoveries.  Please don’t hesitate in commenting about my progress.

My son is the best boy!  Isn’t that what all parents say about their kids?  Max has letters after his name that start at A and go all the way through Z.   He doesn’t have a lot of degrees; he is only in the second grade.   But he has a lot of diagnoses.  These are: ADHD, BPD, OCD, ODD, PDD/NOS, SID, Anxiety, and at this time of year, seasonal allergies that plug him up good.  I bet a lot of you parents can relate.

Why all the diagnoses?  One friend calls them labels that help us work with these children.  In my son’s case it is:

1. ADHD – to explain his hyperactivity (Attention Deficit Hyperactivity Disorder)
2. BPD – this is why he is so manic sometimes and calm other times (Bipolar Disorder)
3. OCD – this covers his recurrent, unwanted thoughts (obsessions) and repetitive behaviors (Obsessive Compulsive Disorder)
4. ODD – man, can this kid be defiant (Oppositional Defiant Disorder)
5. PDD/NOS – covers his social skills (Pervasive Developmental Disorder – Not Otherwise Specified)
6. SID – he needs pressure or spinning to calm him down.  He used to be overly sensitive to sounds but that seems to have gone away.  He is very impulsive and is a picky eater. Cannot stand tags in his clothes; we have to cut them out. (Sensory Integration Disorder)
7. Anxiety – this is fairly new (in the last year).  He has gone from being very outgoing to having a difficult time being away from his mother.
8. Allergies – I’ve included this on the list because they tend to exacerbate all of the other issues especially when he cannot breathe.

In later posts I’ll address each one of these “labels” and explain how my wife and I address each one of them.

As a lot of parents can attest to we are caught in a whirlwind of differing opinions as to what the real problems are and what we should and should not be doing to raise our kid.

We have been told that the diagnoses are worthless that it is just bad parenting.  Why haven’t we been spanking him, or better still, using a wooden spoon or a belt, to straighten him out?  Or another suggested sending him away to military school.

Get rid of the medications he is fine (yes, he seems fine because he is taking meds right now).  I had one parent tell me to give my son up to him for a week and my boy would come back a different child.

Others believe that that we should institutionalize him, or give him even more meds, to take care of the problems.

Max is in a special school and even though he is in second grade he spend alot of time with the fourth grade class learning more advanced subjects.  He takes pride in the fact that he is the only student in his class that has never been sent to the “quiet room”.  He saves all of that for when he comes home.

He currently sees a play therapist and has a mentor to help him work though his issues and he has occupational therapy several times a week at school.

As I talk about what my wife and I are doing for our son, I hope our readers will share some of what they have found works and what doesn’t as well.