Friday, April 4, 2014

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.
We got Corbyn's platelet counts back today. YAY!! He is almost back to his baseline! This week he is sitting at 25k. He was thrilled to hear his counts today, because he can ride his bike again.

Yes, even at the lowest "healthy" number(250k) this is only 0.0001 of what he needs, but we'll gladly take this count.

Ellie has been doing better and we have been keeping this tube going still. However, we are still venting off and on. Monday I should be able to call and schedule a tube change.

Tuesday, April 1, 2014

New Doctors for Jade...

Jade had a neurology appointment today for the dizzy and blacking out spells she has been having. The neurologist was very thorough with the questions and examination for her. He discovered her blood pressure and heart rate are different when she sitting, laying, and standing, and again after exercise.

The next step? Well before she returns in 6 weeks he wants her to follow the migraine diet carefully, be seen by one of the Mt Sinai Children's Cardiologist. He also wants her to be seen when possible by the local doctor specializing in hypermobility syndromes and connective tissue disorders.

He was totally amazed to learn that when Jade was 2 she was diagnosed with severe/profound autism and we had been told she would never talk or a number of things that normal children and young adults do. Additionally, when we told him we were told by this point in her life she would have to be confined to a group home, he said he wished doctors would stop giving dire predictions like that. Also he stated in all his years as a neurologist, she is the first child ever he has seen that was once diagnosed with a severe/profound diagnosis, no speech  till nearly 5, then become high functioning.

The most frustrating part about these appointments right now is that we are supposed to be updating our EFMP (exceptional family member program) paperwork for the military. This paperwork is essential for the military because transfers are based off medical needs and the ability to meet the needs. For example with Corbyn and his ITP we have to have access to a hematologist that treats kids with platelet disorders.

Well, this is frustrating right now because the kids see one doctor then have to be checked out by another. With Jade, during her physical, it was discovered that she needed to be seen by an eye specialist and the neurologist. At least the eye specialist will be a simple follow up as needed. However, now cardio and bone/joint specialist as well... (sigh)

(and her dance teacher thought I was over reacting by letting her drop dance last year) After she dropped dance she did 6-8 months of 3xs a week of intense physical therapy...