Extended School Year

My autistic daughter has an extended school year (ESY) as part of her special education program.  She goes to school from September through the month of July, giving her the month of August for vacation.  It’s been SO helpful for her.  Children with autism can easily experience regressions if they aren’t receiving constant reinforcement in what they’ve learned, so an extended school year is VERY helpful in making sure they don’t go backwards.

In my daughter’s program, ESY is more relaxed than the other months, so while they’re constantly reviewing what they’ve learned, there is NO homework and no tests.  For two weeks they spend the first half of their day participating in the town’s summer camp, which means she gets fresh air, exercise, crafts (great for gross and fine motor skills!), and all-around fun (although, since she’s uncoordinated not athletic, the exercise part isn’t her favorite).  The ESY also gives my husband and me a chance to give some special attention to our other two children, who desperately need it.  It’s not easy being an autism sibling.  I have greatly appreciated the opportunities the ESY has given my daughter, as well as the opportunity its given my other two children to have time with me (and each other) without their sister.  It gives us all a break.

Which is why it pains me to say that I think this may be the last summer we’ll have her participate.  (Not all students are eligible for the ESY, and families have the choice to “opt out.”)  The older she gets, the more annoyed she gets at having to wake up for school while her siblings sleep in.  She also understands that while she’s running around a field playing games she’d rather not be playing, her brother is home playing with toys – and while she’s reviewing her spelling, her sister is watching television.  Almost every day this month she has complained bitterly about having to get up early for the bus, and it’s getting harder for me to get her out of bed and out the door.  The truth is that while I’m glad for the opportunities ESY gives her, I understand where she’s coming from.

We had the “autism” talk with her a few months ago, and she understands now that she is “different” from her siblings and most other kids.  She was starting to realize this difference anyway, so we gave her the word for it and explained it to her in ways she could understand.  But now she complains, “I wish I didn’t have autism.  I wish I went to regular school like “E” and “J” (her siblings) so I could stay home and play.”

“I wish I didn’t have autism…so I could stay home and play.”  The statement breaks my heart, not because she feels badly about herself (which she does NOT), it breaks my heart because she is beginning to see the ESY as a kind of punishment for having autism.  THAT is unacceptable to me.  Living with autism is hard enough without feeling like your being punished for it.

I need to sit with her teachers and re-evaluate this for next year.  Her “unique behaviors” are not as inappropriate as they once were, and she no longer needs the same intensity of behavioral interventions she once did.  Do we really have the same concerns about regression that we did when she was younger?  Are there materials they could give us to review with her at home that would provide whatever reinforcement she needs?  I know the ESY is good for her, and I’ve loved it for our family, but is it still as necessary as it once was for us?  So necessary that I’m willing to have her think she’s being punished so she can receive its benefits?  I’m not sure about that.  Is there a way we can explain it to her so that she DOESN’T see it as a punishment?  That would be the ideal, but I’m not sure about that either.

Decisions decisions… It would be nice if we could KNOW the right thing to do, but that is often not the case, especially in the world of autism.

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