Sunday, June 30, 2013

To Live Like A Kid

Autism therapy is very goal and measurement oriented.  We have speech goals, language goals, social goals, emotion-based goals, awareness goals, occupational therapy goals, sensory goals, and goals for our goals on the list.  Honestly, sometimes it seems as if the list of goals never gets any shorter.  But, as I’ve talked about in the past, autism grows up, too, as the child does so challenges change over time.  And then of course, there’s the fact you never really want to master a goal because it might give someone power to take away a service or two. 

When we first started in-home therapy, I read the therapy log as quickly as the therapists shut the door.  It was a little daily emotional roller coaster; I’d cheer the victories and would take the lower numbers personally.  Eventually, I learned to calm my note reading obsession down, along with the perfectly clean and organized house when the therapists are here obsession.  I still read the notes, but not as frequently, and I’ve learned that a day’s statistics are really just indicative of that day, not really the skill or task in general.  Some days, Caden can identify the entire alphabet in lower case, but regularly he is stuck at 17 letters.  On the flip side, he can regularly identify the entire alphabet in upper case, but will have days that he reverses his M and W and so on. 

Transference continues to be a struggle for us. Caden can master a skill with his therapists in the safety of the family room, but not be able to perform the same task with another person or outside of the house.  For example, he is quite confident using his emotions thermometer to talk about his feelings with his therapists, but still won’t identify the color he is feeling for us without a lot of prompting (and usually tears).  He can say most sounds quite well as long as they are segregated from other sounds and he is focused on only one at a time.  Practice the S sound for a while, and he will then try to make every word start with the S sound, but then in regular conversation regularly doesn’t recognize that word requires the S sound. 

These are all struggles that we expect; they go hand-in-hand with autism.  Language and interactional difficulties along with obsessive behaviors are the hallmark of most autism literature that you read.  It isn’t a surprise to us that reading and other abstract concepts are a struggle for Caden while he continues to excel in the concrete subjects like math or science.  We take every victory for what it is at that moment—a success.  That success may not be replicated or it may become the new norm, but the focus has to be on the hard work and outcome of the moment. 

A personal goal that Dan and I have had from the beginning, though, is for Caden to just have the opportunity to be a kid.  That was one of the driving forces behind us getting Elf, and it has continued to be a motivator for us as we make life decisions. It isn’t, however, something that is easily written into an Individualized Education Planor therapy goal sheet. “Just being a kid” isn’t something you measure or quantify as a scientific fact, so it doesn’t  make its way into most planning sessions or formal settings.  But as parents, with all of our heart and soul, we want Caden to be able to be a kid. We want him to have opportunities to experience and live life through the eyes of a child not the eyes of autism, anxiety, overload, or fear; just through the eyes of a 6 year old child.

We don’t get that opportunity often, but when we do we treasure it for the precious gift that it truly is.  On a recent trip, Caden was able to play in the swimming pool, to jump in, to swim under water, and to play with squirt guns just like his sister.  Honestly, for those hours he was simply a kid enjoying the summer weather in a time old tradition just like his sister.  Those moments didn’t just happen and they didn’t come easily; in fact some of you may remember the summer we spent washing Caden in our backyard because he would only tolerate water from the garden hose and wouldn’t go near the tub.  In fact, you might even remember the disastrous water balloon incident from last summer’s Miracle League game. To say this moment was slightly epic wouldn’t be an overstatement and it is one that I will relive in my mind and dreams for months, if not years, to come.

It is also moments like this, though, that help make the not-so-good moments more tolerable.  I guess you could realistically say watching Caden play and splash in the pool offered hope that will sustain us through the next round of challenges and struggles.  I hope in my heart of hearts that Caden is also able to hold onto those memories and that maybe somehow they bring him comfort and joy when the struggles of daily life try to bring him down.  Maybe in his dreams he can relive those moments in the pool and simply soar as a kid.  I guess more than anything I want those moments to be the norm in Caden’s Tale.