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Our Journey With Autism

Written By: teamcharliebear

The Beginning:
charlie_babyCharlie was born February 23, 2006 after an eventful pregnancy, to say the least. When his older sister Abigail  was 9 months old I learned I was expecting again. It had taken me a year and a half to get pregnant the 1st time so we didn’t think it would happen so quickly. We were WRONG,  but elated they would be so close in age and have a lot they could relate to each other on..or so we hoped! Ever the optimist I tried to find the positives in everything but the hits kept coming. At 14 weeks, on a visit to a family members house out of state, I slipped on my footing and bounced on my rear down 5 steps! Not knowing any doctors in the town or that were open on a Sunday, I waited till I got home on Monday to be  seen by my own. My husband at the time wasn’t there, not uncommon. We were already falling apart but no one knew it as we did all our fighting behind closed doors. I felt alone… A lot! Scared and fearful I was going to lose my baby. I was alone when I fell. I was alone when I went to the Dr. and told “everything is fine”. I was often alone  with a 1 yr old during a difficult and highly stressful pregnancy. At 26 weeks another catastrophe. I was sitting at an intersection waiting to turn left and another car slammed into the back of mine doing about 50 mph!  It started light contractions & I spent the day in a hospital hooked up to monitors until things “seemed to be fine”. They stopped. They sent me on my merry way home…but I was still worried. An ultrasound showed all 4 chambers of his heart were working perfectly – not enough!  How can a child go thru ALL THIS and still be ok? The deck is already stacked against him, I mean, look who his parents are?!? Now you want me to trust? Have faith? HA! I had to try, but it wasn’t easy. I assure you! It was the most miserable pregnancy, but it all melted when I saw those big blue eyes!

FORGET EVERYTHING!!!! ….HOLD THE PHONE!!!!

My heart belonged to that little boy named Charlie… No other guy on this planet even stood a chance! I never knew my prince would be so dern short…Ha! Good golly I was smitten! It was abundantly clear…MY KIDS were ALL that were ever going to matter…..

The Diagnosis:
charlie0When 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, 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 will 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 that you begin to believe they think you do. Time just kept passing, and CBear 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 “I’m 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. I’d have given my LIFE to be wrong right then! But 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.

The Wake Up Call:
imageOnce 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, soon to be husband) 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”image 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.

4 Comments

  1. Debbie McEwing says:

    Awe..from the heart and soul ..no emotion left unused…so brave and strong to share this with the world…you may never know hte difference this will make in someone elses life..

    • teamcharliebear says:

      Thank You! These things, as you know, aren’t easy to admit. However, I know that an obscene amount of marriages end in divorce. It’s actually around 90% when couples have children with autism. Are the children to blame? ABSOLUTELY NOT!!! But am I alone here? ABSOLUTELY NOT!!! So yes, I do think mine is a story worth telling, and nothing worth being ashamed of. It’s just my perspective. I’m happy to say his father and I do work together well in the case of “the best interest of the kids”. We are most impressive when the chips are down. We just weren’t good at being married and being there for each other apparently. There is no mistaking how much we love those two kids though. Be hard not to, Right? ;)

  2. Missy says:

    I first heard about your son from OFM and now that I have read about him I am absolutely in awe with his story. I’m a pediatrics nurse and I see children every day. All spectrum of the disorder from high functioning to severe. I saw the video he sent Beth and fell in love with the video. He is the sweetest kid. You are truly blessed with your children. One of my friends has an Autistic child and James is the sweetest little ten year old boy but he can be a hand full. Thanks for sharing your story with the world.

    • teamcharliebear says:

      Aww! Thank you so much for that ,Missy! I do feel incredibly blessed and lucky with the hand I’ve been dealt where my children are concerned. Abigail is so mature for her age and a fierce protector of her younger brother. She is also very good at educating people in her school to his condition and she will light the world on fire one day as an amazing advocate for autism! She already is in my opinion :) Charlie is by far the hardest working little guy I’ve ever known and he has such a sweet disposition! I’m so proud of him and his progress..he teaches me daily probably more than I teach him. We are so glad OFM turned you onto us, and I hope you come back often. ~ PJ

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