Posts Tagged ‘special education’

A friend of mine recently asked me what I think about the following quote:

“{Individuals with autism, a child with a different ability, etc} are the ultimate square pegs; and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.” ~Paul Collins~

On so many levels, I absolutely agree that we are indeed destroying the peg by trying to make it fit into the hole. But what upsets me the most about this train of thought is that in our society, anyone who doesn’t follow the “herd mentality” is considered a “square” peg.  If you are an original thinker, if you happen to learn differently, if you have some type of disability, most often this is seen as a problem.  Why?  Why the terrible need to force everyone to be the same?

Throughout history, great achievement and growth has come from those wonderful square pegs that just do not fit into the round holes of society.  Thomas Jefferson was considered “uneducable” by his teachers and kicked out of school.  Helen Keller was deaf, mute and blind.  Albert Einstein was thought to be on the autism spectrum.  Beethoven was deaf and suffered from depression.  Yet consider all the contributions these amazing people made to the world. 

My life is full of square pegs.  In my opinion, how we treat people, the support they get and the extent to which we allow them to spread their wings and fly determines how they interact with society and how society responds to them. 

My son who is severely affected by autism is a constant source of joy for all who know him.  He hasn’t said a word in many years.  Yet, he is probably one of the most effective communicators you will ever meet.   Through his actions, his facial expression and body language, he shares his beautiful, loving spirit. 

My stepson has learning disabilities.  He struggles in school academically in spite of modifications made to his studies.  It’s not that he can’t learn, he simply does not learn the same way as most other kids learn.  He recently took his written drivers exam.  He passed it on the very first try!  NONE of our other children did that.  They all took the test mutiple times.  But my husband took great care to sit with him and go over the material every time he was here at the house with us.  Having the material explained to him in a manner he could understand and retain, made all the difference. 

Just because these guys don’t fit the plain round mold doesn’t mean they aren’t wonderful.  They are incredible young men that I love with all my heart.  They are unique.  They are just square pegs. 

We are not all the same.  I don’t think we are intended to be.  Why do we always focus on the deficit?  Is it to make ourselves feel better about our own short-comings that we don’t want to admit?  Does it make us feel smarter somehow to knock someone else down?  That not only hurts them but it hurts us too.  There is so much to be learned from those who are different from us.  Especially, in my humble opinion, those with special needs. 

I don’t think you can make a square peg fit into a round hole.  You can pound them down, but they will always stand a little taller than the plain round pegs.

“Why are you trying so hard to fit in when you were born to stand out?”  -Quote from movie “What A Girl Wants”

Autism Awareness

Image via Wikipedia

Twenty-one years ago this past Monday, I gave birth to a beautiful, healthy, baby boy.  He weighed 7 lbs 11 oz.  He was 21 inches long.  I was so excited by his arrival!  His birth had been easy and quick, on this, the day I had chosen for his birth because nine is my favorite number.  I will never forget the first time I saw him.  His perfect little face.  His chubby little body.  I will never forget the smell of him.  Snuggling him close as he nursed.  The very sight of him was, and still is, pure magic to me.

My son is my hero.  You see, my son has autism.  He does not speak.  In fact, he has a great deal of difficulty communicating even his most basic needs and wants.  It can’t be easy being non-verbal in our world.  Simply existing cannot be easy for him.  The constant bombardment of stimulation from all the sights, the sounds, the smells, the touches.  But he does it.  He has somehow learned to cope.

We have made progress but it hasn’t been without having to do battle.  I have watched him endure and overcome so much.  Sensory issues have always troubled him.  There was a time when he couldn’t tolerate being barefoot in the grass.  He couldn’t keep his clothes on because the touch of them against his skin was an irritant.  We kept the house silent for he simply could not bear the noise from the TV or radio.  For many years, I couldn’t get him to leave the house without carrying a small oscillating fan with him to spin; or worse yet, a blender without the lid.  If you haven’t been exposed to autism, you probably think that sounds crazy.  Maybe it is.  But it is what it is, and just like parenting any neurotypical child, you choose your battles wisely.  Some days, everything is a battle.

For years my son, who is very orally defensive, had only a few items he would eat.  Now, I am going to tell you this drove me crazy!  I was in a constant state of horror over the quality (or lack thereof) of the food he was eating.  If it wasn’t round, brown or crunchy, forget it.  And he had some type of internal rule.  Being crunchy was good if you were a potato chip, but not if you were a carrot stick.  Being round was great if you were a chicken nugget, but definitely not if you were a pea.  And brown was great for french fries, but not so good for oatmeal.  I can only imagine how horrible it would be to not even be able to enjoy your food.  We worked long and hard with occupational therapists to build his tolerance.  Today, there’s not many healthy foods he won’t eat.  He loves fruit, raw vegetables, and meats.  We have gotten past the preference for round, and the preference for brown, but he still prefers crunchy.

There are a million different struggles we have had to face.  There will be a million more.  Short of Divine intervention, my son will not be able to live independently without constant care and supervision.  This is something that I have had to learn to accept, while still doing all I can to offer him every opportunity for progress and as much independence as he is able to achieve.  I’m not gonna lie and tell you it’s easy.  Every day of my life I worry about what will happen once I am gone.  Who will watch out for him?  Will there be money to provide for him?    How will I make sure that he is kept safe and surrounded only by love?  There are good days; there are bad days.  There are days when I still hurt from the diagnosis even after all this time.  But I am so thankful to have this child in my life.

No, things aren’t how I thought they would turn out 21 years ago when I held my baby and admired him.  All I can do is work hard while I am here.  I try to soak up every minute I have with this beautiful boy and I thank God for the wonderful blessing that he is to me.  He is such an example of tenacity for me.  He makes me want to be the very best person possible.

 

There is a poem that I have kept on my refrigerator for many years.  It reads:

Kids Who Are Different

Here’s to the kids who are different,

The kids who don’t always get the A’s,

The kids who have ears twice the size of their peers,

And noses that go on for days…

Here’s to the kids they call crazy or dumb,

The kids who don’t fit, with the guts and the grit,

Who dance to a different drum…

Here’s to the kids who are different,

The kids with the mischievous streak,

For when they have grown, as history’s shown,

It’s their difference that makes them unique.

One of the highlights of my morning is putting my son on the school bus.  Not that I like to see him go.  Quite the contrary.  I enjoy every minute of our time together.  What brings joy to me every morning is the little, smiling faces already on the bus when it comes to get my son.  Beautiful faces with bright smiles.  Little hands that wave to me as the bus pulls away.  I love these children.  Pure.  Innocent.  Full of love.  Love the way I believe it was meant to be.  Accepting.  Non-judgemental.  Genuine.

I have long admired the love that comes from my son and other children like him.  Those with “disabilities.”  I don’t know.  Are they really the ones with the disabilities?  It is true in some cases they are not able to do the many things we take for granted.  Many have trouble walking.  Some do not write.  Or speak.  They may have difficulty understanding instructions.  Many need care and assistance for even the simplest daily tasks.  But what I see are beautiful people with hearts of gold.  Able to do what very few of us can even comprehend.  My son could care less whether I drive him around in a beat-up, old pick-up truck or a Mercedes Benz.  Doesn’t matter does it?  As long as we get safely where we need to go?  If I serve hot dogs for dinner or steak, he is happy to have food and eats heartily.  Clothes from Wal-Mart, a consignment shop or the Gap?  He could care less!  As long as he is in soft material that is easy on his skin and has his favorite colors, all is well.  How I long to have more of his character.

Over the years, I have learned much from my son and from other people with different abilities.  I trust my gut more when meeting people.  Maybe I am a little more present when I am with those I love, really taking the time to take them in and appreciate them.  I give thanks every day.  On the rare occasion that my son gets upset with someone or something, he makes his objection known, and then he lets it go.  He doesn’t hold a grudge.  He will welcome your apology and offer you a hug or two.  How I need to learn more forgiveness.

I always say I have two heroes.  Oprah and an my son.  Oprah because she inspires the world to change for the better.  My son because he inspires me to do better.  He is just so full of love.  So full of joy.  Such a gift to me and those who know him.

Thank God for allowing me to see the beauty every weekday in those little angel faces.  Thank you for allowing me to share my life with someone so much wiser than myself.  Please watch over all people with different abilities.  Help the world to see and embrace all they have to offer.  Amen.

My son was born a healthy baby.  Full term pregnancy.  I did not drink, smoke, or take drugs of any kind.  Nor did I have a history of this behavior.  I didn’t drink caffeine, eat fresh water fish or any other food that could have elevated mercury.  I stayed active.  I gained 35 lbs with this, my second pregnancy.  Labor was induced by breaking my water during the week of my due date as a result of pregnancy induced high blood pressure that had made an appearance the week before.

The birth of my second child was so exciting to me.  There are five years between my two children.  I waited until my ex-husband was comfortable with the thought of another baby.  When we made the decision to get pregnant, I started prenatal vitamins.  I did everything humanly possible to make sure an easy pregnancy and healthy baby.  Believe me, I have analyzed this under the proverbial microscope a million times.  I believe most parents of children with disabilities go through this.  “Did I do something wrong?”  “Could I have done something differently?”

A chubby, happy, breast-fed baby, my son was the picture of perfect health until around a year, which was shortly after I stopped nursing and switched him to formula.  Then he began to have a series of ear infections, upper respiratory infections and continual sinus drainage.  Developmentally, between his first and second year, he began to lose ground.  In between his second and third year, he lost all of his words and became non-verbal.  It was due to not feeling well I was told.  “Don’t worry”, the doctors said, “he will catch up.”  After one particularly memorable series of vaccinations, given to my son while he had an upper respiratory infection, things took a turn for the worse.  I remember asking my doctor if we should wait and vaccinate when he was over the infection.  She told me it wouldn’t hurt him as the two were not connected.  For four days after those shots, my son ran a fever, wouldn’t eat, was incredibly irritable, and would just lay in his crib moving his head from side to side as he cried.  Looking back, I will always remember this as the time that my son’s life changed.  It’s hard to believe, but that was almost twenty years ago.

Raising my son has been an incredible journey.  There have been so many ups and downs.  No please don’t misunderstand, my son is one of the greatest joys and blessings of my life.  He is pure love.  But I would be lying to you if I said it has been easy.  And I don’t mean caring for my son, I am really speaking more of the feelings, thoughts and questions you have through the whole process of first getting, then dealing with, a diagnosis.  I remember the first person to say the word “autism” to me.  My reaction was to get angry.  Autism?  My son?  He was very interactive, loving.  He didn’t sit in the corner and bang his head.  This was my limited, stereotypical view of autism up to that point.  Fear.  Complete and utter terror.  That is what I felt when I first heard that word.  A whole new world was about to unfold before me.

At first, I spent a lot of time crying.  What did I do wrong?  This had to be my fault, right?  I stuck my nose into every book, every bit of research available at the time.  I hauled my son to one of the leading developmental centers in the country only to be told that he did NOT have autism and that he would develop just fine given time.  I enrolled him in therapy:  speech, physical, occupational therapy.  The opinions of the therapists were as different and varied as the health professionals.  It was so confusing and upsetting.  Was I doing everything I could for my son, or was I obsessing needlessly?  Judgement from others ran rampant.

Over the years we have tried just about everything.  Most of us are easy targets as parents anyway, always wanting what is best for our children.  Throw in a disability that remains a puzzle, with so many variables, and we are open season for all the cures, treatments, aides.  You name it, if it could possibly help, we will try it, buy it, promote it.  And through the years I have.  We have modified diet more times than I can remember.  We have done all of the therapies including music and horseback riding.  We have tried a variety of vitamins and supplements.  Has there been improvement by any of these?  Yes.  The most from dietary supplements and from chemical free products.

Today, my son has grown into a wonderful, young gentleman.  He is my hero.  When I consider everything he must hear, see and feel during a day due to his sensory issues I am amazed that he can keep up such a happy disposition.  He is almost always smiling.  He has plenty of hugs and kisses for those of us in his life and he will go out of his way to offer a hug or a handshake to a total stranger if he sees someone in need.  How he determines who is in need of a hug is a mystery to me but he is always eagerly embraced.  He is beautiful.  To me, he represents true unconditional love of others.  No judgement, just acceptance.  If only we could be more like him and other special people.

There isn’t a day that goes by that I don’t worry about my son and about his future.  There also isn’t a day that goes by that I don’t thank God for the privilege of being his Mother.

“You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil … you are the mother, advocate and protector of a child with a disability.” -Lori Borgman