Posts Tagged ‘Autism spectrum’

April is Autism Awareness Month.  From time to time I see a post on Facebook that states “every day is Autism Awareness Day at our house.”  I can relate to that.  Every day IS Autism Awareness Day at our home.  Has been for the past twenty years. Our son was three years old when someone first said “autism” to me.  It wasn’t until he was six that he received his diagnosis.  In part, I believe, because we moved when he was four years old from a rather progressive area to another state without the resources of our previous city.  And, in part, because our son wasn’t that delayed at the time.

Autism has a way of sneaking up on you sometimes.  One day, your child is talking and playing; the next he’s making verbal gibberish and his hearing appears to be selective.  It happened fast.  It was, and still is, baffling, and scary. As our son has grown, the battles have been different with each stage of his development.  Challenges in behavior can appear and disappear without a trace of a clue as to how they got there or where they went.  Sometimes bad behaviors can last years, other times weeks or even just days.  Many times, behaviors that you thought were long gone, reappear just long enough to scare the hell out of you, making you think you’re going back down that rocky road again, only to have them recede back into the shadows as abruptly as they surfaced.

I’m not going to sugar coat things and tell you it’s easy.  It’s not.  Every day can seem like a test of our courage, our strength, our dedication to our son.  But then there are the good days. There is nothing more rewarding than the good days.  Fortunately for us, we have many good days.  We have worked hard for many years.  We have been blessed to have fought and won many battles, to be able to enjoy the fascinating person that our son has always been in spite of the struggles.  A woman I know once told me that I make autism look glamorous.  She meant it as a compliment, but her statement still leaves me dumbfounded.  There is nothing glamorous about autism – not even on the very best day.  I think she was referring to my attitude and how we as a family handle the pressures of daily life with autism.

In actuality, credit belongs to our son. Imagine, if you can, the things that he is bombarded with every day.  His senses make him hyper-aware so he is acutely sensitive to all the sights, sounds, smells and textures of everything around him.  I believe being overwhelmed is physically painful for him, yet he pushes through trips to the grocery store, outings with family and friends, dinners at crowded and noisy restaurants.  There are days when it all proves too much for him, just as we have days when the pressures of life seem too much for us, but he still tries.  He still uses every bit of tolerance he can muster to complete the task, the trip, whatever challenge is in front of him.  That’s more than I can say about many if the neurotypical people I know.  He is amazing!

My son has always been one of my heroes.  He stretches me.  When I simply don’t think I can do any more, when I feel like I cannot possibly rise to the occasion yet another time, I look at him and all he has over come, all while not being able to utter one word of complaint.  From somewhere deep inside, comes the will to try harder, to carry on.  For his example of courage and for his leadership, I am thankful. When times get tough, when my heart hurts and my body aches from trying to keep up with the physical demands of autism, when my mind is fuzzy from lack of sleep and there just aren’t enough hours in the day, because of his example, I press on. We may not win every battle but in the end, our hope is to win the war.

Love truly does conquer all.

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

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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.