Filling in the gaps

I just want to talk about the time between when John turned a year old and now at 2 1/2. Up until his first birthday, everything seemed great. He was walking and running but not talking much. We just figured he was more focused on the motor skills than verbal skills. Certainly he would come along soon enough.

Then doctor’s appointment after doctor’s appointment, we started to become concerned. The doctor would ask the same question. “How many words does he say?” Again at 15 months, 18 months, and onward. Everytime our answer remained the same: “He says ‘Dada’ and I have heard the ‘Bah’ sound before.” Each time we had to fill out the mSAT, which is a 20 question survey for parents to report a child’s social development. Each time, there was little to no change. The doctor reassured us many times.

“Some are just later speakers.”

“Sometimes children experience a regression when a new baby comes into the family.”

“Nothing to worry about yet. He will catch up.”

When John was 6months old, we were surprised to discover that we were expecting his younger brother, exactly 2 months after his first birthday. Our Christmas baby. The regression thing may have made sense to the doctor and others who didn’t know him as well, but it never explained anything for me. To regress, you have to have made progress and then go back to a previous state. John had never made progress. It was all the same. “dadadadadadadadadada” Just like that. We eventually learned that he was not even using “dada” as a word to described his daddy. It was a sound. He was babbling.

His babblng wasn’t quite “right” either. There were no inflections in his voice. Just the same pitch as he said “dadadada” over and over again. He was a happy boy, don’t get me wrong about that. He smiled and laughed and squealed in excitement!

Eventually, his doctor reccommended seeing a speech pathologist to try and catch him up. In the meantime, I started working on sign language with him. His first sign was “more.” John has always loved cars, so I bought a buch of new little cars and put them in a rubbermaid container that he had to ask for me to open. Otherwse, these “special” cars couldn’t get played with. I started with “hand over hand” to help him realize that when he did the sign, he got rewarded. At this point, over a year later, he has 3 signs. Not as much progress as I had hoped, but at least he can communicate his basic needs to me using “more,” “please,” and “all done.” He can even say what sounds like “please” (‘aeese’) and “bye bye” (“dye dye”) while he waves (something that he has only learned to do in the past few months.) I am forever thankful for his SLP and Occupational therapist. They are an awesome team and have really helped us to keep positive and make progress.

His doctor also recommended seeing a ediatric developmental and behavioral specialist. Let me tell you, it is harder to get an appointment with one than you’d think. Normally, your doctor sends the referral, you get a call, you schedule an appointment. Locally, there is one of these specialists. Her waiting list is over a year. In Atlanta, there is one that was recommended to us, but they never returned my calls and when my mother in law emailed them, they had an equally long waiting list, unless you wanted to use the clinic that did not take insurance. They could get you in within 4 months, but it was $2000 up front, out of pocket, for 2 visits. Not possible for us at this time. We live on a strict budget with only one income. Columbia, SC has on that I had heard great things about, but by the time we got a referral sent they were no longer taking Georgia patients.

Thanks to my wonderful mother-in-law (who knows how to get things done! This woman is amazing!), John was able to get in with the local doctor within a couple of days of her calling over there. That experience was not what we were hoping, as stated in the previous post. Since then, we have sought out and scheduled with another specialist in Savannah (about 2 hours away) and will see her next month. We have received initial paperwork and it states that “the doctor has set aside an hour or more to get to know your child.” That sounds a bit more like what I am looking for. Time spent on my child to come up with a diagnosis (although, I do not doubt the autism diagnosis.). I just want more information and to feel like the doctor cares about us and has a plan. So fingers crossed!

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(Photo taken at doctor’s office the day we first received his diagnosis. He was lining up all of the cars, one of his favorite things to do!!)

Since then, we have learned that we have been referred to ABA therapy and have begun the process towards getting John into a program. I wish I could explain some of these terms and types of therapies to you, but I am so new to this that I am still researching and learning for myself!

It has been a crazy and emotional past year as we have watched our boy, who is so so so so smart, fall behind on his social skills. Seeing other children his age and younger pass him has been so difficult. But I will save that for another day, another blog post.

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