Journal Search

By Bonnie Yates

Nick just called me from school to ask for help on a scholarship application. I told him that I was busy doing “work” and had to call him back. After I got off the phone, I felt guilty. Too busy to talk to my son who is away at school in a different state. Once, I would have traded anything for such an interruption.

In preparation for the “Life Afterwards” event, I went looking for my old journals. I thought I owed it to the families in the audience to show them first hand how desperate and despondent I once was, confronted with the seemingly slow pace of Nick’s improvement.

I can’t find the journals from the mid-90’s right now. I may need to make a trip to the office storage. But I know that the things I wrote were very bleak and despondent.

It is so amazing that children develop in the manner that they do. And it is so devastating when that developmental process goes awry. Once Nick got his diagnosis, I could comprehend that each of these things were true. What I needed and what I did not have was an understanding of the possibility that brains are changeable and Nick’s brain would get better with therapy.

Yes, there were some intimations that he might go to regular kindergarten but I really did not know what that meant. I read Catherine Maurice’s book Let Me Hear Your Voice and wondered whether what she reported- that two of her children had recovered fully from autism-could possibly be true.

Along the way, I bugged a senior supervisor enough that one day when Nick was 7, she met me at Lacey Park with A., a 7 year old girl that had recovered. I was able to interact with her for an hour or so and see that she seemed like a normal kid. The only possible difference I could see was that her facial expressions were a tad less animated than other girls of the same age. It was impressive and yet unfathomable because life with Nick continued to be very difficult (and we had been doing therapy steadily for 3 years). Without really being conscious of the thought, I found myself wondering if A. had “really ever been autistic”.

Later, when I had been around for a while and watched enough ABA therapy, I realized that it was a miraculous building block process, albeit one that occurred at a seemingly glacial pace. Each day, therapists would perform “drills”, which over time had a synergistic effect. But the day in and day out seemed like filling a bucket with individual grains of sand.

I was not good at observing Nick’s changes while living with him on a daily basis. My journals reflect the voice of someone who was hopeless but had nowhere else to go to. It was clear to me then that ABA was the “last house on the block.”

The research on recovery might have helped me a lot; and it would have been fabulous to have strong parent organizations to turn to for support but the did not exist in any kind of organized way then. Those things came much later.

Looking back, I can remember that there were lots of times when I felt defeated, was sure that there was no hope and wanted to give up. And sometimes, I did give up. But it turned out that what I thought was not predictive. Treatment was working quite independently of what I feared and imagined.

It was so painful for so long that I thought that nothing else life offered up was going to be hard to handle if we could just get through autism. I also wondered if I could ever get to the point where I would see life through a different lens.

Life has since taught me a few more lessons. All serious stuff with children and loved ones is extremely challenging. And if you are lucky, you get to move beyond those things but carry the wisdom of the lesson forward.

Most of the time, I do not think about autism in a personal way anymore. Instead, I get caught up in the life struggles of my three children who are out there in the “regular ed” world dealing with ordinary life problems. Periodically, I catch myself having forgotten what the problems used to be like.

Sometimes though, the old tender feelings come back and I get chills. Recently, Nick called me from school and told me that he had talked to his R.A. because he was looking for suggestions on how to meet people at school. I went quickly to that place of worry and wondered if he is going to be okay and if he will find someone to love him the way that we do.

On another day, though, I called him and told him about a very difficult day at work and he listened so sweetly and empathetically that it touched me deep down because he has such essential kindness. ABA set that free within him. The rest of the time, we talk about politics, and life in rainy Olympia and how much money I need to send him and what he is thinking about and feeling. I hang up the phone and think how marvelous it is to have such a conversation.

So it probably is not that important to find my journals. But to those of you who are awake at night feeling depleted and despairing, take a deep breath and wait a bit. Something else might be happening.

Your Comments and Questions are Welcome