Life With Aaron

In the words of my friend and his mother, Angela Henderson...

Aaron today.

On January 19, 1990 we brought a beautiful baby boy into the world and named him Aaron.  He arrived 4 1/2 weeks earlier than we planned and weighed in at just 5 lbs 2 oz.  He was a tiny 18 inches long.  What he lacked in size at birth, he has more than made up for as an adult!!

It wasn't until Aaron was about 8 months old that we knew something was wrong.  He wouldn't grasp or play with a toy or rattle.  He didn't roll over, sit up on his own, crawl or scoot like most babies do.  Often, he'd sit in his swing or carrier or crib and just stare off into space.  He didn't look into our eyes and even when we were speaking to him, he rarely acknowledged us.  But he was a very good baby!  He slept through the night - 6 full hours - by the time he was 2 1/2 months old.  He rarely fussed or cried.  He was content to just sit and stare at the wall.  I guess that sums his babyhood up - he always seemed content.  We were often told how lucky we were to have such a "good baby."

Even his pediatrician didn't notice until I mentioned my concerns to him.  Finally he recommended we visit a child development center and at 10 months old Aaron began attending a developmental pre-school and was diagnosed as moderately mentally handicapped.  Soon we were overwhelmed with his therapy.  There were several different occupational therapies, physical therapies and speech therapies.

A little past age 2, Aaron finally took his first steps and got his first tooth.  We were grinding up food from family dinners to resemble baby food because he lacked teeth... actually, Aaron is now 23 and still has some of his baby teeth!

But Aaron still had no words back then and he became more and more frustrated.  I can remember many times sitting on the floor with him with my arms wrapped around his little chest until he was done throwing his tantrum.  If I didn't hold him this way, he'd bang his head on the floor or bite himself.  When he started to learn sign language life got a little easier for us.  The tantrums got farther and farther apart because he was finally able to communicate with us.

At age 5 he started Kindergarten and what happened next caught us all by surprise!  Aaron had an aid that was just his and went through his entire day at school with him.  She was out of this world wonderful and she loved and cared for Aaron like he was her own.  Not long into the school year, Aaron began to say words and by the end of the year he was talking.  When I say talking, I don't mean like you and I talk... he has a very monotone voice, no emotion, no fluctuation.  And he would repeat and repeat and repeat everything over and over.  But he was finally talking...  And I fully credit his aid for this gift!!

When 1st Grade started up in the fall, Aaron was reading. We had read to him all the time.  ALL.THE.TIME.  To this day I can still recite Dr. Suess' ABCs!  Aaron loves books and music and they helped calm him down then and they still do today.  We could hardly believe how quickly he was learning and while I knew he'd never be "normal" I wanted him to reach his full potential.  We pushed, encouraged and helped him in every way we could.  There's nothing my son can't do - we've never set limitations for him.  He is so very smart!!

By 4th Grade, Aaron was an A-B student on a modified curriculum.  He studied hard and earned those grades by himself.  He could spell almost any word you'd give him; he knew all the states and their capitals, every Cardinal baseball player's number and which driver went with what car in NASCAR.  That is when we realized our child is not mentally retarded.  So I kept pushing the teacher, the school, and the counselors to do more testing.  In 5th grade, Aaron was finally given the proper diagnosis of autism.  I thought, "Of course!!  How could I have not seen it?"  The flapping hands, fascination with things that spin, ignoring us, not responding to his name 80% of the time, the echolalia and the need for a very rigid schedule are all classic symptoms.

Aaron participates in Special Olympics
and L.O.V.E.S. every moment!!

Now we had the opportunity to really help him excel.  We developed, along with the school, an IEP (Individualized Education Plan) with goals and benchmarks.  One of the biggest struggles was getting him to respond and react to his peers in an acceptable manner.  Thankfully they loved him, helped him and accepted him just as he was.  He attended St. Bernard Catholic School and graduated 8th grade as an Honors Student.  Then came the scariest moment of MY life... mainstreaming him into a regular High School.  I was so scared for what might happen, but again he had some wonderful helpers and was accepted.  Of course you'll always find a few jerks, but for the most part he had 200+ friends who always had his back.  Thinking about that time now always makes me smile BIG!

Aaron excelled in everything he tried and he loved learning and being at school.  Things weren't easy and we still had lots of therapy, meetings and conferences with case workers but he was a successful student.  In 2009 he graduated from South Spencer High School (Indiana state law allows a child with a disability to stay in public school through their 22nd birthday year) with his class and the friends he'd grown up with.  I remember sitting in the bleachers and when they called his name the entire gym of 1,000 people or more burst into thunderous applause.  I had tears running down my face realizing just how many lives Aaron had touched.

Aaron continued his education at the High School that fall and that's when things started to fall apart...  his support system was gone:  His friends had graduated and were gone on to college and jobs.  I'd worked at the school since 2000 so I'd always been there with him and then, 2 months into the school year, my job was terminated.  I also had knee replacement surgery that had me out of commission for about 6 weeks so I wasn't there for him in the same way at home either.  He got a new teacher when the one he'd worked with for the last 4 years left the school.  And his brother left for college further disrupting his day-to-day routines.  And with all these changes, Aaron started to change.  He reverted back to staring into space and not paying attention to anything or anyone.  He stopped listening to music, stopped playing his games and he carries on a constant conversation with himself.  There is no eye contact, he won't answer when you call his name or ask him a question.  I've cried and cried.  We worked so hard to get him where he was.  What is going on now?

Aaron and his brothers he loves and who love him!

We've seen a barrage of doctors who've run all kinds of tests ranging from blood work to hearing tests to an EEG to check for seizures.  Nothing!  Every test is negative.  There doesn't appear to be  anything medically wrong.  Hardest of all to bear, he wants absolutely nothing to do with me.  Every time he walks into a room and ignores my existence, it feels like my heart is being ripped out and stomped on.  I am utterly and completely at a loss for what to do to help him... to bring our sweet Aaron back to us.  We are currently on the waiting list for the Christian Sarkin Autism Center in Indianapolis and back to square one.

I love Aaron so very much!  And I so want to find the key that will unlock his mind...