A Letter from Charlie's Mom, Rebecca Kahlsdorf

Charlie was born on September 29, 2004. He was cut out of me after 24 hours of labor... just too big to come any other way. He had a strong cry and a healthy appetite. We never worried about his future, only dreamt of the great things he would do and the person he would become.

His babyhood passed without event. Other than being off the charts for height, weight and head circumference, he was developing typically... saying things like "shoes", and "doggy"... and then, at between 18 months and 2 years old, the words came fewer and more far between. Suddenly, I couldn't remember the last time he had said "doggy". He didn't answer when I called his name. He attached to hard, heavy objects and toys instead of stuffed animals or blankets - taking a truck to bed instead of a bear. He obsessively pinched my skin. Often, I'd find him in the living room, staring upwards at the fan, spinning in the opposite direction over and over... never getting dizzy. While other little boys his age played with cars, scooting them back and forth and saying "vrooom, vroom", mine only turned his upside down to spin the wheels.

When my mom first suggested that he may have autism, I was angry and dismissed the notion while secretly a feeling of dread washed over me and stayed. "He is affectionate! Kids with autism don't like to be touched!" I countered. Apparently, this is a common misconception about autism... while it is true that some children are "sensory defensive", there is an opposite disorder that comes with autism - a hunger for movement and texture. "Sensory seeking" is what they call it. I admitted that I worried about his speech development and was directed by our physician to the school district's early intervention screening. He qualified for in-home speech and occupational (fine-motor) therapy once a week. I also placed a call to Legacy Emmanuel Children's Hospital in Portland, Oregon and had him put on the long list of children waiting for the life-changing diagnosis: is he autistic, or not?

We waited for seven months on that list. My daughter, Audrey, was born just 2 months before the initial possibility of autism was introduced to me... and, sadly, much of her infancy is blurred in my memory by the pain and anxiety of not knowing that consumed me. It was all I thought about. It was the first thing that entered my mind when I woke up in the morning... the last thoughts I had before drifting to sleep... and then again every time I got up to nurse my daughter in the night. I felt broken and helpless. Meanwhile, Charlie was getting more and more difficult to parent. He had meltdowns, spurred by his inability to voice his needs. His therapists offered techniques to help, but I knew I was in over my head.

Finally, 2 weeks before Audrey's first birthday, we had our diagnostic clinic. Four medical specialists were present: a child psychologist, pediatrician, speech therapist, and neurologist. They tested him and questioned us, and met privately before giving us the verdict we had waited so, so long for: Charlie has autism.

Everyone calls it a journey. One to be taken day by day, so as not to overwhelm us. Doors were opened once we had the official diagnosis. Charlie qualified for a pre-school program when he turned 3 in a class specifically for children on the autism spectrum. He rides the little bus 4 half-days per week and has experienced tremendous progress with his outstanding teachers there. I started taking him to speech and occupational therapy privately, and we began horse-riding lessons every saturday at "Healing Winds Therapeutic Riding Center". I attend monthly Autism Support Group meetings.

After weeks of watching and learning, and doing my own research (and insurance money running out), I made the decision to make myself Charlie's personal therapist. No one knows and loves Charlie like I do. His therapists expressed their confidence in me and my decision and offered support if ever I needed it. Consulting with Charlie's teacher and other trained professionals, I now use a teacher's planner to map out our days and our weeks. Every day, I provide Charlie with activities that meet each of his goals and needs I constantly refer to: Self-care, physical play, academic play, sensory play, a co-operative chore, and a field trip. Around my neck, I wear a knitting counter to keep track of the number of times Charlie verbalizes his needs... the numbers are increasing each week. We are getting somewhere!

Our challenges still exist. His meltdowns are getting better - but are still unpredictable. Our "meltdowns" are when he gets so upset or frustrated that he loses control of himself... hitting, kicking, and screaming. A typical full-out meltdown climaxes for 15 minutes (but feels like an eternity). Afterward, he is exhausted and expresses regret, giving kisses and hugging me tightly. He remains vulnerable for the remainder of the day. Meltdowns in public are excruciating. He is getting heavier and more difficult to handle physically. He also does not understand the danger of being hit by a car. He runs away from me at the store. I fear for the day when he doesn't fit in the cart or a stroller anymore. My hope for his future is accompanied by the fear that comes with the unpredictable nature of his disability. I worry about bullies, about his ability to be independent when he grows up... and many other things that could keep me awake all night every night if I devoted much energy in that direction. But, he's counting on me to be able to function today and tomorrow. So that's what I'll focus on.

Imagining our family being joined by an assistance dog offers hope to us. The dog would see Charlie as a brother in the pack who needs to be looked after. The dog would come to us trained to be in public, with Charlie either harnessed to him or holding a strap on his harness, keeping him out of harm's way. When I muse about it out loud with my husband, I say "When we have the wonder dog..." and go on to dream about the freedoms he would afford us. I could take him anywhere without the stress of calling after him and chasing him through the aisles. The calming presence of the dog would act as a diffuser for frustrating situations, bringing Charlie down from meltdown territory. Charlie may be able to take the dog to school, breaking the ice for other children to approach Charlie and desire his company. Most of all, though, we all need someone who wants us around... who doesn't care if our clothes look funny or we have a bad hairdo... who is excited to see us regardless of how successful we were that day... who loves us unconditionally...

Charlie needs that kind of friend.