Sunday, April 7, 2013

What Autism Awareness Month Means to Us

April is Autism Awareness Month.  According to the most recent statistics, autism effects 1 out of 88 kids, 1 out of 50 school age children, and 1 out of 31 boys.  An epidemic in numbers.

April is no special month in our house, except for lots of birthdays. Autism awareness is everyday in our house.  My son Gibson was diagnosed at age two in 2009.

When Gibson was 12 months old, my mommy senses went off. Something was just a little different from our first child, Violet. He wasn't hitting milestones, like eye contact and talking.  He was making noises, but no real words. There were other strange things, like the way he played with toys.

 Our journey on a diagnosis first started when he was 18 months old.  His daycare approached me about his hearing.  He did not answer to his name or other commands while there. This began to confirm my suspicions that something was very wrong.  I immediately called our local children's hospital in Seattle, and made an appointment with their audiology department.  The results? Inconclusive. Next, we were recommended for speech therapy.  Once we got there it was apparent something was quite wrong.  The therapist took me aside after his initial appointment and told me I should contact children's services for testing. Gibson did not play appropriately, ignored commands, questions, didn't have any words, and had repetitive behaviors, called "stemming", IE, flapping hands.

We went to a variety of people, clinics, and testing.  Audiology again, still inconclusive.  Neurodevelopment, failed most tests for his age group. Speech and language, where he also failed most categories.  As you sit in these rooms at a children's hospital and hear all of these failures and conclusions about your own child, it is like white noise is just buzzing in your ears.  Thoughts go through your brain.  "What does all of this mean?" "Is our child normal?" The initial results of his testing? "Gibson appears to be on the autism spectrum, with a moderate to mild presentation.  He was two.  We were told since he was happy, did not fear people, touch, loud sounds, did not have tantrums, was willing to learn, and was diagnosed at such a young age that his outcome was hopeful. Hopeful.

I moved from clinic to clinic listening to all of these different results, I looked around the children's hospital.  I was relived to have a diagnosis, finally, a path to which to take next, but I was also mourning for my child's future, mine, and our family.  I had no idea what the future held, but in those moments as I looked around the hospital, I realized that an autism diagnosis was not the worst thing a parent could hear in these halls.

However, it was my family's reality, our burden to bear.  In those first months, I was incredibly depressed.  I blamed myself, I had done something wrong?  Thought of all the caffeine I had during my second pregnancy, TV I let him watch, I pondered all the food I ate, vitamins I took, the things I was exposed to, how sick I was the first trimester.  I tried to place a time when it all went wrong, was it the shots? I looked at baby pictures. At four months old he was so engaged, what happened?  I made myself crazy.  Honestly, looking back I think this went on for a long time, series of depression and playing the blame game.  We got Gibson into speech therapy, occupational therapy, horse therapy, and preschool.  Hearing all these diagnostic tests again, about how your child is failing at everything, behind all his peers, and even listing his cognitive skills at 2 1/2 years
Gibson saying "Hello" to Pluto at Disneyland
old the same as a six month old, perpetually sucked.

My attitude changed completely in November 2010, when my 29 year old sister received a terminal cancer diagnosis. It was like everything got pulled back into focus.  I learned to live for everyday, not two, ten, or twenty years down the line.  We concentrated on our family, as is, until the day she passed, seventeen months later. Cancer made me understand that autism was not a death sentence.

Fast forward four years since his diagnosis. Gibson, like most autistic kids has made some great strides, and a few steps backwards.  Over the last few years he has continued on a path of school and therapy. I've been told we are extremely lucky to have an autistic kid like Gibson.  He is super easy in terms of his behavior, demeanor, he will go anywhere, loves to travel, he doesn't mind new places, different routines, you can hug and snuggle with him as much as you would like, loud noises don't bother him, and he is adaptable. He doesn't have health issues, seizures, sleeps throughout the night, is 100% potty trained. I've been told he is the best and easiest autistic kid people have ever worked with.  However, don't mistake that for a placement of where he might be on the spectrum or his intelligence.  That "mild to moderate" diagnosis he first received would not be accurate. Gibson has "classic" autism and spends 70% of his time in a life skills classroom and 30% in a mainstreamed kindergarten classroom.  In the traditional way of thinking, he is under performing his peers in a dramatic fashion.  When you look at his IEP ( individualized education plan) he has low skills. And forget about his three year psychology evaluation, ugh scary.

However, like most moms, I know that those pieces of paper and tests don't define my son.  They rely on testing that does not favor my child's learning ability or style.  Gibson is a visual learner, most of those tests are auditory, which I know he will fail.  Gibson is spelling, he has a collection of words and phrases, he can work an iPad better than most adults, he is constantly surprising us with his abilities, and I know he has greatness in there.

Gibson and mommy hiking at Mt. Baker
If I had one wish as a parent, it would be greater public understanding of autism. When I tell people Gibson is autistic, they look at us with a deep sadness and then ask, "Where is he on the spectrum?"I respond with his abilities.  People think autism isn't as bad when kids have Aspergers or they are "high functioning".  However, I am sure if you ask parents who have kids on the spectrum who fall under those categories their lives have challenges, even ones I could not understand.  I think the way we put people on the spectrum is offensive. I mean how would you feel if I asked you if your child was "high" or "low" functioning?  We put these people and children in these boxes that aren't a fair way to live their lives.

If I told people Gibson had classic autism and according to all his tests is "low functioning" it would not be fair to him.  Gibson is not "Rainman." He isn't angry. He won't hurt you. He won't hurt himself.  He doesn't sit in a corner rocking.  But people assume all those things when you tell them that diagnosis.

When he is making noises, he isn't mad, he is trying to talk.  You can touch him, hug him, kiss him, give him high five, and he will do all of those back.  He loves to play, even though he doesn't seem interested. He has hard days when he "stems" or fidgets. He does not like to be without his beaded necklaces or iPad. He has days where he will be angry or upset and has a hard time.  But who doesn't? When he does use speech he has an impediment, and if he does continue to grow his language skills he will probably always have one.

Common public impressions of autism? Is that if you aren't some sort of savant, then you must have a very low IQ. Both are unclear.  I think like most "normies", people with autism are brilliant, low, and everything in between. Another misconception? Autism is a mental illness. It is not. Autism is a neurodevelopment disorder and a sensory disorder, much like ADD and ADHD.  People with autism have sensory issues, which causes their brain to function differently and develop differently.  Hence the issues with fine motor, speech, noises, touch, etc. 

The important thing to remember about autism is while there are common characteristics, most autistic people present those characteristics differently.  Whenever people ask about Gibson, I tell them what his autism means to him, not if he is classic or where he fits on the spectrum.  The truth is I have no idea what the future holds for him.  We still live in the everyday. Of course I don't know if he will ever be in a regular classroom, hold a job, have a girlfriend, or even have friends. Or all those other things that a parent hopes and dreams for their child.  If you paid attention to statistics, then you would be perpetually sad.  Only about 12% of autistic kids with IQ's over 50 are successful. Yikes.  Good thing we don't live our lives by stats.
Gibson and his sister Violet

Gibson has never told me that he loves me.  But he shows it everyday.  Our family tries to live our lives with love and understanding, and it is hard.  Hard to not be angry, why us, why him? Hard not to be depressed, and think will my life ever be normal? However, we've made the choice not to be.  Life is too short and too precious not to make that choice.  None of us know what the future holds, so why let it hold us. Gibson might live with me and need me until the day I die, and that is okay. As long as he is happy and smiling, what else could a parent hope for?

1 comment:

  1. Gibson is lucky to have a mom like you