Sep 29, 2013

Charlie got Hot Wheels and I cried.

Charlie turned eight this past week.  Our family has recently been going through the most challenging of years to date in this marriage, and yet, our extended family and friends have stepped up with prayers, carpooling, childcare, hugs, brownies, and extra special attention to the birthday boy, when we could not.  From the infamous mold issue this past summer, to the most recent struggles, we were so crushed knowing that some things were just out of our control, and emotional needs of our children were the highest priority.  Luckily, G-d placed the most amazing people in our lives, and for that, and for all that you did, THANK YOU!  You will never know how difficult it is for me to ask for help, and even more challenging is struggling to know that I could never repay you fully for what you did.

So, Charlie had some unexpected special gifts from some special friends this past week from a neighbor, radKids instructor, and even the director of Shay's play had a gift to give Chazman. How lucky is that that there are so many people who love Charlie so much and thought of him of his special day? Well, it was the Gotte's gift that made me tear up as he played with it.  He truly LOVED every gift, but I was especially fond of this one gift, because it just allowed me to see how far he has come in his personal journey with recovery.

The week after Charlie's first birthday, my husband shared with me that some of the family at the party were concerned with Charlie's development.  I was raging with hormones, and due with our second child in only two months following that first birthday.  I was angry.  It took a year of watching some odd behaviors before I took action.  At two years, three months old, Charlie was diagnosed with Autism.  He was also given a few other diagnosis at the time, and within the year after that, many more came.  Each time I was led to investigate and test for other diagnosis, I was validated and therapies were able to begin.  It was a difficult choice, but I opted to do some unique therapies, some that I did on my own, others, with a doctor.  Mostly, I did what other families were doing that had children that were like carbon copies of Charlie.  What we learned was that what works for one, might not work for another.  Biomedical therapy is becoming more mainstream, as is the understanding of gut issues with those diagnosed with Autism, however, there is still so much to learn and understand about this disorder.

This weekend the kids and I were looking at old pictures and videos.  Shay wanted to see her smash cake.  I pulled up both migits first birthday and smash cake videos.  While I was in that folder of pictures and videos, I found a video of Charlie sitting in his booster seat, eating.  I was videoing his rocking back and forth very hard, and it appears to be what I now know to be sensory seeking behaviors.  We learned that he has sensory integration dysfunction when he was three years old.  I am not sure how we didn't get that diagnosis at the expensive diagnosis we sought when he was only 2 years old.

Geoff and I scheduled with a local psychologist, and found that we had days worth of paperwork to fill out, prior to the initial visit.  We had three visits, each about 2-3 hours in length.  At the third visit, we got the diagnosis.  So, what did we do for all that time?  Mostly, Charlie was sat in the adjacent room to play with toys, and Geoff and I were going over a ton of questions about Charlie for hours on end.  Charlie would occasionally get a spurt of energy, and would run circles around the conference room table that we were seated at, with the doctor.  Every second or third rounding of the table, he would run smack dab into the corner, get knocked down, and hop right up to continue the mindless circling.  Never once did he cry in pain.  The doctor did ask, "Is that his norm for pain tolerance?"  Yep.  Sure was.  He never cried in pain.  He would constanstly play too rough with other children, and never get hurt.  They always did.

Another interesting thing was that he didn't play with toys.  He would mouth everything, and then, if given a little toy car, would take the toy car for endless hours and rub the wheels up and down his belly, arms, legs, etc.  After a few months, I was so devastated watching this behavior, so I directed his massaging skills, car in hand, and had a relaxing cry as I nursed his baby sister, and wondered what his future would look like.  That was the day I took all the cars, and threw them away.  I was angry.

Years later, lots of therapy and interventions, he received two huge packages of Hot Wheels from the director of the play and her family, for his eighth birthday.  The next day, he is sitting on the floor with his sister, playing with his Hot Wheels, just like I imagined he should have, so many years before.

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