Journey into Autism

With this month being Autism Awareness month, I thought I would share a bit our journey through the world of autism.

Our family started out like every other family. When our oldest was born, she was a bundle a energy and learned everything very quickly. She crawled, walked, talked, ate, did everything early. Celidah had even taught herself how to read and had moved onto chapter books by the age of 3. In my mind this was normal for children as she was my only experience.

Two years later, Jade was born. After a few minor complications during her delivery, and the cord being wrapped around her neck we looked forward to the same bundle of energy her older sister had been. We soon discovered this would not be Jade's start.

Very quickly we realized that she was not meeting her milestones, growing like she should be, had eating problems, was tongue tied. In short, these developmental milestones were falling further and further behind. She was falling behind in both her developmental and physical milestones.

An early childhood development evaluation determined she needed early intervention and not just minor intervention. Once the evaluation was completed, she qualified for speech, feeding, physical, and occupational therapy. After about two years minimal progress had been made.

Around this age we had also been instructed to have an Autism screening done. By this point, she had already had other neurological screenings done to rule out more severe disabilities. Her doctors and therapists wanted to know why her growth was still very slow, she was not walking, babbling, not eating unless it came from a bottle,

I had friends with children with autism as well and we had talked and I knew she had to many of the signs to ignore, yet I felt if I worked with her more I could change her. Maybe I could love the autism out of her.

I think this is the dream of every parent of a child with a disability.

Finally, one day I realized I needed help and a diagnosis. One this day, both girls had been sitting at the table playing with playdough. All Jade would do was scream at her blob. Of course playdough will not respond to a screaming child. Well in her fit of rage she flopped off the chair, landing head first on the linoleum covered cement floor. She pulled herself up to the chair like nothing had happened. At this moment, her lack of reaction to pain told me something was not right. I broke down and made the appointment for the screening. By this point she was nearly three.

Because she was nearly three, the diagnoses was needed, for her to continue her therapies.

I thought I was prepared for the appointment. However, I learned I was far from emotionally prepared. Yes, I knew the facts. I knew the signs. I was not ready to hear, "your child has severe/profound autism."

During this appointment nearly 13 years ago, she could not keep eye contact, had no verbal skills, in fact the list of things she could not do was terrifying to me. The doctor diagnosing her, let me know that she would never walk flat footed, gain verbal skills, be able to attend regular school, function in society. In fact, we were told she would by the time she was a teen she would require the skills only in a specialized group home.

I left that appointment totally devastated. According to that doctor my child had no chance for any kind of a future.