Since switching to the new blog, I haven’t written as much about my son’s special needs. Recently, though, something very interesting has happened, and this post is mostly a way for me to continue to process through this, in order to always remember.

Lately, as we’ve been talking to him, trying to help him remember what he’s supposed to do next, he will turn to us and say, “I have short-term memory.” What he actually means, although he may not know it, is that he has short-term memory issues. I think that he feels like he can only remember things for a short time, and so he thinks he has short-term memory. However, in a year from now, he will be able to remember what we do or where we go, but he has trouble with immediate, or short-term recall of conversations, trips, things we’ve seen and done.

I was impressed that he knew to say that he had short-term memory (issues). I’ve told him that some of his therapies would help him work on his struggle to remember things, but to the best of my knowledge, I never said, “You have short-term memory issues.” I wonder if a therapist said that to him, which would be a very natural thing to do with our guy. He’s very smart and so sometimes the only way to get him to comply with an activity is to appeal to his intellect: to tell him what you’re wanting him to do, and why.

But I almost missed the most important part. I was so amazed by his words and his ability to understand all that, and I almost missed the give-away. I was so proud of his self-realization, despite the struggles that come with it, that I almost overlooked what he was telling me without words.

His eyes showed the fear, sadness and disappointment. It was as though he thought he was losing some of his ability to remember.

And as I talked through some of this with one of his therapists, almost 5 years of “clues” began to make sense.

Five years ago, he started with some tics – the pediatrician calls them benign tics of childhood. When he saw something that he was interested in, he would vigorously nod his head, one time, and blink his eyes, one time. Every time I asked him about it, he told me he was taking a picture of whatever it was. I asked him if he could remember what it was without “taking a picture” of it.

“No,” he replied, each and every time.

These picture-taking tics progressed to a level where he was starting to have a sore neck, pretty awful headaches, and would feel dizzy. Our favorite pediatrician suggested that we try to change his tic, to focus on fixing his health issues, but to allow him to continue “snapping pictures” as needed.

From the picture-snapping with the head, we moved to finger-pointing. He would flick his index finger in the same manner – one quick flick of the finger – while blinking his eyes, thus helping himself to remember what he had seen. Those tics lasted most of that summer.

Since then, we have focused long and hard on sequencing – first, next, then, last – trying to help him organize and structure his actions and activities. We’ve never really arrived at success, at least, not success the success that we were looking for (ability to successfully sequence his activities and actions).

In addition, he began taking something from everywhere we went – sometimes a slip of paper, sometimes a receipt, sometimes a free bookmark or sales flyer – always something that he was allowed to have. This was the “next level” of his picture-taking, I think. He learned that the picture-taking wasn’t going to work for him, due to the extreme discomfort it caused him.

However, I didn’t realize that his “stuff-taking” was a part of this. I thought he just wanted something, so that he could have it. I feared we were looking at hoarding issues. But he always took things, and he always talked about what had happened at that place when he pulled out the paper/item he had taken.

All these years, though, he didn’t have the words to explain to me just how intense his memory struggles were. I know that, on some level, he realizes he struggles. But he’s really only recently started taking ownership of some of his struggles, and most of those are ones that he knows he can work on independently (at least, to some extent).

But his memory? I know this is different for him. I know because of that look in his eyes – the look that can’t hide his fear that maybe this issue is pretty serious and cause for fear.

And so we work. We admit our own forgetfulness. We talk about how it is all coming together – how things he couldn’t do last year, he can now do this year, and that maybe with some more work, in another year, the memory issues will be behind him. And we reinforce what we can, as it relates to memory, in the most loving and kind way we can.

We remind him that he’s so much more than all the issues that he’s working through right now. He’s full of love, humor, art, kindness, joy, funny mischief, and now that he knows that the memory is a struggle, he knows how to handle it – like everything else with which he struggles, he can always ask for help.

Five years later, and everything that has happened in the past few years is all making sense. He knows he struggles with his memory, and it’s now our job to work through that with him. We’ll keep figuring out ways to improve that memory, we’ll give him techniques that he can use when he struggles.

Remember – our kids are just that: children. Whatever is happening inside their minds and bodies that they aren’t able to express must seem so scary at times. It’s our job to take away the fear and to help them understand that they are okay, and that we will help them in the areas where they struggle.

Armed with this new knowledge that he understands himself, we will keep working with him - in order to always remember.

Share this: