As I mentioned in a previous post last year – “Obstacle-Determination“….
In the fall of 1995 – I had a short stint in college. The first day of college I met several great girls. One in-particular – I meshed with so well. We had so much in-common and we just clicked. Never in my wildest dreams did I ever think that almost 20 years later I would continue to have so much in common with this same person.
P.J. and I have gone through a lot together. One of our most difficult and empowering journey’s is autism. When Carter was 1st diagnosed – PJ was the first friend I called because I knew she would understand the numb feeling. She has been there. Her youngest child was diagnosed in 2009 – severe on the spectrum.
She has been my backbone in the “dealing” with and trying to understand the spectrum. Our children are different on the spectrum… yet our feelings are the same. Every emotion one can feel – we do…
Here is her story – Charlie’s story….
When Charlie was about 9 months old I had my suspicions that something wasn’t quite right. For starters, he was far too laid back and content to be my child. He was happy for hours in a swing or car seat. Rarely raising up his head to look around & always smiling. So unlike his sister Abigail (aka: the whistler) who was a ball of fire and energy and into everything. He wasn’t trying to talk yet and he had this strange motor skill developing with his right arm. He would pinch his middle finger and thumb together and wave his arm in and out in an awkward fashion. I seemed to be the only one who noticed this. Everyone kept saying “He’ll talk when he’s ready” & “His Dad didn’t talk until he was five”, but I just felt something was off. It’s not like I wanted something to be wrong. You spend enough time arguing with doctors and family members that you start to believe they think you do. Time just kept passing, and Bear never talked, but he was sweet. Still, he missed milestone after milestone on the baby charts and I grew ever more concerned. Finally, by age 2 the doctor heard my plea and started the evaluations. Why is everything so slow?! A waiting list, then a hearing test. Yes, he can hear. Another waiting list and a long evaluation for autism began. By this point my marriage had all but gone down in flames. I’d been sleeping on the couch with the kids for years or in another room all together. We were virtually strangers. I lost my job in January 2009 and our house would soon follow thanks to that. Sitting in a cold white room, in a month I don’t even recall, I remember the doctor coming in. I don’t remember her name. ”He has autism. It’s severe.” She may have even said she was sorry. I was already so numb…I couldn’t feel anything. It’s not like I didn’t already know. I knew long ago. I didn’t know what autism was really, and I still wouldn’t! Not until Charlie was five. It’s not as if I wanted to be right. Hell! I’d have given my LIFE to be wrong right then! I’d spent so much time with everyone dismissing me that I had no fight left for a while. Which was unfortunate, because my son needed me. Now, more than ever, and I wouldn’t be in it to win it for two more years.
The doctor that basically offered her condolences upon diagnosis moved north shortly thereafter. I haven’t seen her since. We had no direction. No history in the family with this and I was about to learn what denial was all about. For more than a year I’d been trying to tell people something was up to no avail. Now, everyone was looking at me saying “do something!”. Coming from someone who had just lost a job, a house and a marriage? I wasn’t feeling like I could save anyone right then. I was more in the position, “You said he was fine. He’s fine!” I’m telling you, it wasn’t pretty! I’m not one of these perfect super moms who had it all together. I see these other moms who got their child’s diagnosis and got them into therapy in no time flat! These women hit the ground running with programs, support groups all sorts of unimaginable things. It took me a long time to get here, and I have a lot of ground to make up still. My wake up call came in an unlikely place.
Once the dust finally settled from the divorce I found a job and a place to live. Still I was in a daze and Charlie wasn’t progressing. It seemed we were all just going thru the motions.
Then the most miraculous thing happened. I started dating again and my boyfriend, now fiance, had the guts to ask about my children. He made one tiny statement that changed the course of everything for my son, and I will forever be grateful. What was this profound statement you ask? “Looks like if I had a kid with autism I’d wanna know something about it!” Now, I’m sure he’s not the first person who tried to reach me, but he was there at the right time when I was ready to hear it. …and that’s all that matters. I’ve been on a mission ever since. Charlie has fought disability and insurance. All the government so called “help resources” more than once to get the treatments he needs. Monday – Friday he receives 11 hours of therapy outside of school every week. Plus summer camps. With the help of visual aids and persistence, Charlie is now considered an emerging communicator.
We’ve essentially turned our house into a learning center for him. We built “occupation station” to keep him from being overwhelmed with a toy box. It’s basically shelves with specific organized bins. Something his first OT suggested and we branched out from there. It now includes token boards and a daily picture schedule. It works great for my OCD and his world makes sense too! Best of all he’s verbally asking for things one bin at a time so it’s helping communication. Our newest addition is a days of the week, month, weather calendar. Charlie and I may not be the fastest to learn something, but we can be taught by golly! It just takes a little creativity with the stubborn ones sometimes, I should know.
We have come a long way, but there’s a long road ahead of us. I hope some of you will tag along and learn along with us or share your journeys too at Team Charlie Bear. We are all in this together. Merely pieces of the same big puzzle.
“Through the blur, I wondered if I was alone or if other parents felt the same way I did – that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that – a parent’s heart bared, beating forever outside its chest.”
– Debra Ginsberg