3 Years Ago
The other day our regional center case manager came by for a home visit. We talk every few months over the phone but haven’t had a home visit in a while. Her friendly nature made it easy to talk. We made some small talk, she told me some stories about her cats and her great grand children. I told her stories about my kids. Then we got down to business.
We had to review D’s triennial paperwork. Triennial! Amazing that three years ago we were sitting in the same kitchen filling out paperwork because he had just been diagnosed. At that time D was the same age as my youngest son and my youngest was a newborn. Just that comparison made the difference between D and our youngest so obvious. Our youngest was chatting it up with our case manager. He asked her name, when she was coming back, told her about his monster trucks, yelled at his older brother and bossed the grown ups around a bit. My youngest son speaks in 5-7 word sentences, jokes around with people and loves to express himself verbally. He embodies the definition of an extrovert.
The same time 3 years ago, D’s vocabulary was so limited that he mostly pointed to the things he wanted and screamed. He still used a pacifier at night, his speech was extremely difficult to understand and he used picture libraries to communicate some of his wants. We had set up schedules and wrote social stories for many problematic situations. He had already gone through a year and a half of therapy including: early intervention therapy (floor time ), play groups, occupational therapy, speech therapy and ABA. I had read too many child development books, was reading my 3rd book about autism and knew which milestones he had and had not met (I have NO idea whether or not my youngest son is meeting age appropriate milestones!). At that time I was doing more research on therapies for autism and learning about biomedical interventions, as well. We were fully in denial that this was a true diagnosis and were under the false notion that D would just grown out of it in a year or so.
If I could have taken my youngest at age 3 and sat him with D at age 3, the difference would have been clear. My youngest makes childhood look easy. He just absorbs the environment around him like a sponge. We don’t have to teach him how to get along with other kids, he just understands. We don’t have to teach how to joke around, he just understands it.
D, on the other hand, has more hurdles to jump and has to work much harder than the average kid to keep up. I have hope that he will catch up but will love and adore him if he never does all the things that his peers do.
D’s case manager and I continued through the paperwork (Regional Center triennials are nothing to sneeze at … nearly 2 hours worth of paperwork to update) and marveled at some of the changes, laughed how some things came full circle (for example, 3 years ago D didn’t have any concern about which direction we drove in the car, but at about age 4 through age 5 would have near melt downs if we drove routes other than the ones he liked, then at about age 5.5 didn’t really care… full circle!).
The most lovely thing about the meeting was how many changes D had made. When we’re caught in the moment it is hard to see the big picture. 3 years ago, he was struggling to talk and do the things that other kids his age were doing. 6 years ago, that little boy was sitting in an incubator in a NICU struggling for his life. A tiny little boy with impossibly tiny fingernails and a full head of hair. He was kept alive by a machine that did the breathing for him. Now, he’s at the 95th percentile in weight and height for his age.
I didn’t talk to D’s case manager about this but it was interesting to think about how our mindset as parents changed. At that time we thought D was just a little bit behind his peers and that all of this therapy would catch him up. Denial is an interesting thing. It may seem like optimism but denial is the worst kind of deception. Denial is deceiving yourself into believing that something that is happening, really isn’t happening. Thankfully for D, we made sure the obtained the therapy he needed and didn’t delve into denial so deeply that we denied him the services he needed. As rapid improvement evaded our present reality (like, always) our mindset slowly started to change and evolve into what it is today: realism and acceptance, while always looking for solutions.
Things will probably always be a struggle for all of us but spending time looking back at the progress we’ve all made paints a very clear picture of steady positive progress. I’m looking forward to seeing what positive changes the next 3 years will bring.