It’s hard to believe that summer is coming to an end, although the inclement weather in San Francisco this week has been providing plenty of warning. Jack’s first day of school is two and a half weeks away! I’m looking forward to it, but I’m also nervous about the impending struggles over homework and clothing and getting to school on time. Hopefully after a few months of a more relaxed schedule, we’ll have more energy and patience to tackle the school year.
In preparation for that, we were able to get Jack screened for sensory issues at a pediatric therapy center near to his dad’s house recently. The OT found several areas where Jack was having trouble, recommended further testing (to determine if this was ‘disorder’ territory) and said he would definitely benefit from occupational therapy. We’ll need to do more thorough testing to determine how much help he will need, but we also need to talk with his oncologists to figure out which areas are likely going to be a losing battle during chemotherapy. Some of the bigger issues the OT noticed were with muscle tone and Jack’s body awareness (proprioception). Those have never been strong areas for him, but they are also areas that chemotherapy can have an impact – sometimes permanently.
In looking up the information on sensory issues, I also found this information on inconsistent responses to sensory stimuli. I’ve noticed that Jack can react differently to stimulus based on the day – one day his socks bother him, and the next those socks are fine and something else is the issue. I knew some of these issues were always present with Jack – I distinctly remember setting him down in the grass as a tot which resulted in him freaking out and bursting into tears when he tried to crawl because he hated the feeling of the grass so much – and as time has gone by with us dealing with cancer treatment, I noticed that during certain times in his treatment cycles he had more trouble than at other times. This sentence from the above-linked article explains perfectly what I was already starting to suspect:
Also, the more outside stresses a child has in his life – the demands of school, illness, lack of sleep, tension at home, hormonal fluctuations of adolescence, changes in any medications – the harder it will be for him to “buck up” and tolerate his sensory issues as well.
I’m glad to have this information and to have some sort of explanation for the issues we’ve experienced, even if it isn’t exactly good news. This gives us a bit more understanding of how to address (and hopefully avoid) problems in the future. I’m not sure if we should have sought more help earlier in his life or not. In the past these sensitivities didn’t really interfere with our life. It’s hard to say whether we would have been able to keep on living with the sensitivities while only making minor adjustments, if he would have grown out of some of these issues, or if things would have gotten worse even without cancer in the picture. In any case, we can only act upon the information we have now, I suppose.
So I plan to follow up with the school district and push for testing and an IEP (rather than just the 504 plan we have in place currently). I hope we can get services through the district because I have serious doubts about our ability to find time for outside help until the cancer treatments are done (March 2015!). Of course, if that is the only option we will go that way. I’m just hoping for the (slightly) easier route. I think we are deserving of that!
Not surprisingly, this is all a lot easier to process when we’re not in the middle of trying to find various articles of clothing that are tolerable enough to get Jack out of the door and into the classroom. Thank goodness for summer break!