Thursday, August 11, 2016

Back-to-School Checklist for Parents of Kids With Special Needs

You may have barely made it through the transition from school into summer, and guess what? It’s time to start the long and traumatic transition from summer back to school. For y’all, anyway. I am gloriously free of kids going to school at the moment, and I can use all the psychic energy I’d have put toward getting their programs in order to find them a job, please a job, any job. But that’s another post. When my kids were of school age, I remember well how I spent the last sweet weeks of summer: calling the special education department day after day after day, bellowing Where is that stuff you promised? Swear to me that it will be in place on the first day! Swear it! (Spoiler: It wasn't.)

Based on those years of sad experience, I can tell you that there’s lots more to back to school for parents of kids with special needs than just picking up some notebooks and outfits. Add these 27 items to your to-do list. And don’t ever assume that because you made sure it was in the IEP, you never have to check it again. Ha! Wouldn’t that be nice?
  1. If your child needs a one-on-one paraprofessional, make sure the school remembers that and isn’t just planning to hit the pause button on your child's disabilities for a few weeks while they figure their staffing out.
  2. If your child needs special equipment, or people with special training, or ramps, or elevators, or therapists, or specialists, call and make sure they will be in place. Call again. Call daily.
  3. Just because your child has always taken the bus does not mean that this year the bus will show up. Call the transportation department and make sure.
  4. And that car seat your child is supposed to have for said bus? Make sure they have that too.
  5. Make sure the school nurse knows about your child's medical special needs.
  6. Make sure there’s a school nurse.
  7. Make copies of your child’s IEP to distribute to all those people you’d just assume would have been given it. Like the teacher.
  8. Put together a “greatest hits” version of the IEP for the people who do need to know about specific things, do not need to know everything, and would never ever read that whole humongous gob of paper anyway. Like the gym teacher. The specials teachers. The lunch lady. The paraprofessionals. The bus driver. The bus aide. And basically everybody whose misinterpreting of your child could cause problems. So, basically everybody.
  9. Examine your child’s potential school clothes for problems. Collar too easy to chew? Shoes too easy to kick off? Seams too crazy-making? Shop again.
  10. If you’ve received assurances about your child having a particular teacher, a particular classroom, a particular school, call the special-education office to make sure. And keep calling. Changes happen right up until (and right on past) the last minute.
  11. Stock up on special supplies: the huge binder that keeps your kid from having to go to her locker; the spiral notebook with the spiral covered so your kid can’t pick it apart; the notebooks color-coded for different subjects and purposes.
  12. Condense your philosophy on the best way to handle your child into a persuasive ten-page intro to get the teacher off to a good start. Then cut it down to five pages. Then two. Then one. Brevity is important.
  13. Make copies of twenty or thirty Web articles and book pages to go along with your one-page intro. Backup is important.
  14. Worry that you’re giving the teacher too much to read right at the hectic start of the year.
  15. Worry about everything you left out of your intro for the teacher. Worry that the teacher will be offended by it, or ignore it entirely. Worry that you have a reputation for making excuses for your child and telling teachers how to do their job.
  16. Worry that the school supplies you got won’t work this year, or will make your child look different, or will go into a locker or desk and never come out.
  17. Worry that no matter how many times you call, your child will be in the wrong class, with the wrong teacher, in the wrong school. With that one kid who sets your kid off.
  18. Worry that your child’s clothes are all wrong, will make him/her look odd, will be uncomfortable, will be against some new dress-code rule.
  19. Worry that the need-to-know IEP cheat sheet info you’ve given to all those school people will either be ignored or get you in trouble.
  20. Worry that you’ve forgotten someone who should have your child’s IEP but won’t unless you provide it yourself, and your child will suffer for it.
  21. Worry that just because there was a school nurse when you called doesn’t mean there will be a school nurse on the first day of school. Or the second, or the third, or …
  22. Worry that the nurse will forget your child’s special needs, or not care, or overreact, or underreact, or farm that part of the job out to an untrained paraprofessional.
  23. Worry that the car seat that comes on the bus will be the wrong size, or the wrong brand, or broken.
  24. Worry that no matter how many times you call, the bus still won’t come. Or will come too early. Or too late.
  25. Worry that all the equipment and trained personnel and building features your child needs just to, you know, be in a classroom and function will seem like silly little details to the people responsible for them.
  26. Worry that if there is a paraprofessional in place for your child, he/she will be awful, or untrained, or inappropriate in some way. Or, you know, missing.
  27. You know what? Just lie in a dark room from now until next June with a wet rag over your eyes, worrying. That’s a full-time job right there.

Friday, August 05, 2016

Learning to Say, “That Sucks”

A scene on an episode of Parks and Recreation I watched the other week as part of our Parenting Roundabout marathon has stuck in my head lately and got me thinking of the general unsatisfactoriness of trying to fix another person’s problems. On the show, the situation involved a man trying to cater to every complaint of his pregnant girlfriend, and being schooled by some friends that all she really wants is for him to listen to her problems and say, “That sucks.” It’s posited that this is all women really want, and I don’t know about that, but ... maybe. Sometimes. Some days.

But what’s struck me about it more this time around is how applicable it is to parenting. Even with typical kids, it’s often better to just step back and offer sympathy without judgment and without jumping in to make everything better. With our kids with special needs, it’s often impossible to jump in and make everything better, since it’s not always easy to know what exactly the problem even is. When your kid’s having a tantrum or a meltdown or any of so many sorts of discombobulation, trying to fix things so very often makes everything worse. Ditto problems at school and with friends. Certainly there are times you have to intervene, but I bet there are more times when “Yeah, that sucks” and a sympathetic presence would be at least as helpful.

I’m at a point of parenting young adults, and the “jump in and help!” strategy is getting less and less successful. As hard as it is to turn over the advocacy reins to amateurs who haven’t been training at the School of Hard IEP Meeting Knocks for years and years, it’s a necessary step ... and over and above that, parental fixing just stops working at some point. It’s hard to get complete information about what's going on in any given situation (oh, how I miss my days of being able to get the scoop from cooperative paras and therapists). Advice given often turns out to be the absolutely wrong thing to do. Young people become frustrated by the lack of respect and empowerment, or else they learn helplessness, and then you’re all out of luck.

It is so, so hard as a parent to sit back and say, “That sucks.” It is so, so hard not to jump in and fix things. It is so, so hard to not KNOW how to fix things, or even what needs to be fixed. I’m going to give this stepping back and sympathizing a little try, though, and see how far things fall apart without me holding them together with both hands. They can’t fall too far apart, right? Nothing too bad could happen? Because if I’m wrong about this and I really do have to figure every dang thing out myself and fix every problem and anticipate every outcome ... that would suck.