World Autism Awareness day...

Today is World Autism Awareness day.  Unlike Down syndrome Awareness day, I wish I didn’t know anything about this day.  

I wish I didn’t know anything about Autism.  I wish I didn’t have personal, intimate experience with Autism.  I wish…

When both of my older two kids were little, they were so fun, and smart, and behaved so well.  They loving and sweet, and cute, and met the milestones just when they were “supposed” to.   

When Joey was almost five, we made a major life decision, and left the life that we had known for seven years, and moved to Illinois to be closer to my family.  We knew that moving north would be better for the kids, quieter communities, smaller schools, just a better place to settle down and raise our children.  

For just a couple of months before our move, we noticed little things with Joey’s behavior.  He would get frustrated quickly, he would yell out in anger, or stomp around.  He wasn’t as “lovey” or “huggy” as he used to be.  I attributed it to his age, and our lifestyle.  We were Salvation Army officers, and there was no consistency, no regularity in our schedule.  We were away from the kids more than we were with them most days.  They were little and didn’t understand.  Then we decided to leave the ministry and move, and the boxes, and the tension, and the excitement of our new adventure made life pretty crazy.

In the course of three months, we moved across the country, lived with my parents and younger brother in two rooms upstairs in their house.  John wasn’t with us for the first six weeks.  Once John joined us, we found our own place, we each had jobs, and things started to settle down a bit.

Joey’s attitude and behavior was pretty stiff but I still just attributed it to all of the changes in our lives.  I knew that once we got really settled, he’d be fine and the sweet loving little boy that we knew would pop back out and join us. 

By August, we’d been on our own for about two months, and it was time for Joey to go to Kindergarten.  I was so excited for him.  He would make friends, and go to cub scouts, and be invited to Birthday parties with his little friends.  We signed him up for soccer, and then there would be T-ball.  I couldn’t wait to be one of those Moms who took her kids to all of the playdates, and parties, and games.

But things didn’t settle down.  He never made friends.  He didn’t go to cub scouts or Birthday parties.  Those dreams of mine were quickly replaced with calls from the school about his anger, his behavior, and what piece of property that he’d torn, broken, or ruined that day.  His teacher was expecting, then she was gone for her maternity leave, then the holidays came with all of its craziness.  I kept finding things and reasons to blame for the way Joey was acting.  It took me a little while to process that there was something more.

I have a very dear friend  who has a son who is a bit older than Joey, and one a bit younger.  When she would email about her boys, especially the older one, I could just replace his name with Joey, and it was as if she had written about my son.  His idiosyncrasies, his aversions to this or that, his behaviors in school and at home.  We already knew that Sue’s sons were on the Autism Spectrum.  Asperger’s syndrome. 

Over the years, I have said it time and time again, I am SO thankful to have her as my friend because I’ve gotten TONS of advice and support and encouragement from her through the years.   It was because of her sons that I knew what we were dealing with.  I knew that our lives had been thrown into the deep end… and I didn’t know how to swim…

When Joey was in first grade we finally got an “official” diagnosis.  Asperger’s syndrome.  

Joey, or Joe as he would rather be called now, is 16.  He’s a Junior in High School.  He has an IEP at school, he has a one on one associate for most of his classes who helps him make it through by keeping him focused, and on task.  She is also there in case he has a meltdown or needs a break.   His teachers are wonderfully understanding of his abilities, and of his limits.  I will never doubt that God put us here, in our little community with the school and the teachers, and even the kids that we needed for him to succeed.   The lifestyle of a Salvation Army officer was not conducive to Joe’s success and growth.   We are blessed.

I love my son.  I love his smile, and his quirkiness, and his offbeat sense of humor.   I love that he is sweet and caring and sensitive with the littler kids.  I love that he is smart, and that he still gives me hugs and kisses (almost) every day!  I love that anywhere we go someone knows him, and they always say “Hello Joe” or ask how he’s doing. 

I don’t love that he has only a very small handful of real friends.  I don’t love that he has never been invited to a party with friends.  I don’t love that he might never learn or be able to drive.  I don’t love that I have to remind him every day to take his meds, to use deodorant, to use shampoo/soap in the shower, to clean his nails and his ears.  I don’t love that he won’t go away to college because he will probably not be able to live independently or keep up with college classes, campus life, etc.  I don’t love that I get phone calls from the school several times a week because his behavior is off the charts wild, and he throws furniture, and breaks things, and scares the teachers & students.  I don’t love that I have to fight with him to do his homework.  I don’t love that he lies to get out of said homework thus making me seem like the Mom who’s clueless when he goes to school without it finished.   My heart drops every time the phone rings and it’s West Burlington Schools…

I don’t love Asperger’s syndrome.  I don’t love that it stole my sweet, normal little boy so many years ago, and with it the dreams *I* had for him.   I don’t love Autism.  I hate Autism.  I hate that it steals children, and never gives them back.  I hate that it sneaks up on us and we have no way to prepare for it, or to fight it.   

I hate that I know that today was World Autism Awareness day, and I hate what it means.