Having a special needs child is hard on your soul. They push every button, test every bit of patience you have, and at the end of the day, they may not even give you the simple hug that makes it all okay.
Not that an average two year-old can’t do that. But then, my daughter isn’t two. She’s ten.
A normal child will make mistakes or have a difficult time with a tough concept, and as they grow up you watch them learn. You are constantly surprised by the things that they are now able to do. But with a mentally disabled child, you are instead constantly reminded of their shortcomings, of what they can’t do. You live surrounded by examples of what your child should be, but isn’t. This is a heavy sadness to bear. It hurts to the very inner core of being a parent. There is no comfort for this pain, because – this is who she is.
My daughter has no real concept of time. We’ve tried. But at some point you run out of things to try. You exhaust the methods and techniques and are left with a sigh and a shrug and you just accept that this may be something she will never get. But time is a something that permeates every aspect of our lives. It guides our day, measures our work, and allows us to bear the distasteful – but not for her.
She understands sequence, but that’s not the same as time. She can tell you that Tuesday comes after Monday, but the term “next week” is mostly meaningless. Even the word “tomorrow” is alien to her.
My daughter uses the word, “remember” to direct your attention to something she is thinking about. She will say, “Daddy, remember we were at the park yesterday?” But the word “yesterday” is a filler. We could have been at the park that afternoon, or three weeks ago, it doesn’t matter. The concepts of past, present and future simply don’t exist for her. Her memory is in the eternal now.
So, it was with some stress that she got up this morning (with much normal Monday morning ten year-old complaining) and said, “Ten more days, right daddy?”
After pondering this question for a respectable time, and finding myself at a loss for context, I asked, “Ten more days until what, honey?”
“Ten more days, then graduation, right,” she asked, hopefully.
I visibly slumped. Somehow she had gotten it into her head that her fifth-grade graduation (a mostly symbolic event in the special needs track at school) was at the end of April. We had made some progress with her regarding calendar days. She’s really still just counting them sequentially, but she can point to “today”, which is huge. She doesn’t fully understand that “today” starts at 12am and goes until 12pm, or even that “today” starts when she wakes up and ends when she goes to sleep. But she can look at the calendar and point to the day and (mostly) tell me the date. So it was with great sadness that I had to inform her that her graduation wasn’t until June. She doesn’t get this, of course, and is even more upset because for her, graduation marks the end of school, and she isn’t liking school right now.
She used to like school, but then she was placed in a class of 16 kids (seems small, yes?), all special needs, in grades three, four, and five. One teacher and an aid. So much for individual attention. She spends her days mostly doing pre-printed worksheets that are mind-numbingly boring. And every time she turns one in, she is handed another which is harder than the last. Needless to say, I think I am looking forward to middle school for her as much as she is. Change has been a long time coming, and June can’t get here soon enough. So I ache inside ever time I am reminded, myself, that she doesn’t have the concept of time to help her cope with this educational gulag. Every day is just another sentence lived out in between recess and lunch and finally meeting me at home. She can’t say, “just six more weeks”. A week is an unknown quantity. Vaguely, it is what happens between the days of Sunday and Saturday.
So after much weeping and frustration (hers and mine), she finally relented and started a new barrage of questions about the number of days until June… Counting them out would have left her in despair so I worded it simply as “a few months.” Saved by the distraction of ambiguity.
Finally, as we were going out the door to meet the bus for school, she turned to me and asked, “Remember tomorrow, dad?”
How do you even respond?