So Vince and Edda are out of school. Five minutes after school let out, they both proclaimed their intense boredom – Vince by actually doing the classic, “I’m so bored” and Edda by following me around the kitchen trying to bite me. I have planned a whole summer of FUN for both of them and in return I get time during the day to work in order to pay for their expensive-out-of-the-house FUN! This is so different from my own childhood – as soon as I was old enough to be left alone, the only thing I did was watch VCR recorded prime time TV shows in the morning, followed by eating Stouffer’s french bread pizza, followed by Days of Our Lives and General Hospital. Ah, now that is how to spend a summer!
In a bizarre coincidence – both my husband and my go-to girlfriend are traveling this week, so the amount of talking that I’m doing on a daily basis has dropped to an all time low. My conversations these days are “I’m so bored!” followed by “Go read a book!” followed by “I don’t want to and I’m so bored!” Since I haven’t been talking very much, I tend to brood.
I’m struggling with the end of the school year and acknowledging the fact that Edda really didn’t make much progress. No discernible academic progress, no discernible progress in her physical capabilities. And really, I don’t think I will see any great progress in the future. It’s not that I think the school system is shirking its duties, I have nothing but respect for Edda’s teachers – years of teaching the most severely disabled kids both in inclusion and segregated classroom settings, they have seen the whole range of kiddos with all sorts of disabilities and it is hard work – coaxing progress from these kids with damaged brains and bodies is a thankless task, it takes so long and the gains are so small.
And I’m struggling to come to grips with the realization that the lack of progress is OK. Frankly, I trying to convince myself that the fact that we are not going backwards is a win in itself. Hey we are doing GREAT! It’s just so terrible for me to think that at age 8, perhaps Edda is in the prime of her life – and maybe the prime of her life was actually 20 pounds ago when we could actually carry her and maneuver her around hiking trails and such things and she could experience more things. I definitely feel like her growth (really, I know a blessing too!) has really limited the things we can show her and do with her. And although I think in general Edda is content and happy, as she gets older, I feel like she is getting less and less happy. We have these little family “jokes” that used to get her to laugh so easily – mainly chicken noises (which I have done in an elevator full of people) – but we try those old jokes and she doesn’t even crack a smile these days.