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Navigating the Dissonance
Sometimes I feel like I’m doing a dance, always trying to find connections with J’s world and our world. So he can participate in our world. So I can make sense of his world and make it a little better. One thing I’m constantly trying to expose him to is pop culture—so he knows what kids are talking about at school. It’s like being required to learn all that Greek Mythology in school before you can talk about literature in the upper English classes. If you don’t know the reference of “the Midas touch,” you have no idea what anyone’s talking about. If you don’t know who Darth Vader,…
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Neverland
Up until now, I feel like we’ve been negotiating this puberty thing okay. J’s obsessed with hygiene and cleanliness. He would take showers three times a day if we let him. Flossing has to be followed up by mouthwash. We even introduced deodorant before the start of the school year. I let him choose out the scent, and we lucked out on the first try on the application type (it’s a click kind that dispenses a cool wet deodorant—something I thought he’d never go for sensory wise). We practice using it a couple of times a week because he really isn’t a smelly kid yet, but with autism, the more…
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And Then Came Fred
Steve and I never planned on getting a dog. 13 years of marriage and it never came up once, that is until January of 2014. W had gotten a fish tank for Christmas and within a week and a half and three trips to Petco (and PetSmart) we went through five guppies. Five. It was really painful to watch, with W tearfully questioning what she’d done wrong and why they had to “just keep dying.” She’d run to her bedroom everyday as soon as she got home to see if her fish had died while she was at school. Then, while sitting on the edge of W’s bed with an arm full of…
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That Physical Piece
Growing up, I remember an old man with a toque and big boxing glove mittens, jogging down the sidewalk along Riverbend Road in the dead of winter. Shirtless. Each year I’d watch him as we drove by in our warm car just shocked–and amazed, thinking that this had to be the year he caught pneumonia and died. My parents would just shake their heads in unbelief as they watched him too. But even though we thought he was crazy, we really, really admired him. We didn’t really know why he did what he did every winter, but we knew he must have some sort of iron will–some incredible motivation to do it. I…
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Never a Controlled Experiment
I feel like maybe I should write this post in installments—in fact, maybe over the next few weeks I’ll go into a little more about our experiences and thoughts on autism and medication. It’s obviously not an experience, story, or discussion that can be summed up in 1,000 words or less. It’s also a very emotionally charged one—some people feel really strongly for or against medication. At this point in J’s life we feel that medication for his anxiety and ADHD symptoms are necessary. That might change. After all, he’s constantly changing. In fact, we saw Dr. R. a week and a half ago and after the nurse took J’s…
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Evolution of the Choir Concert
I’m holding my breath–ready to pass out–because we’re so close to the finish line but I can’t quite declare that we’re in the clear yet. At noon today, I announced to Steve that we had just passed the twilight zone hour (if J’s going to have a catastrophic meltdown at school it’s almost guaranteed to happen during the 11:00am-12:00 pm) and that we have one more day to go. We just need J to hold it together for one more day and then we can officially declare victory for the semester. I don’t know why, but Christmas time has always been hard for J. Someone at church told me once that she…
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The Truth About Santa
Back in April, Steve, W, J, and I had a pow-wow in our living room. Steve wasn’t on board with the idea (he’s the one who loves our kids being little and doesn’t want them to grow up). I’m always the one who wants them to grow up (maybe it’s because of J and his delays; I have that extra push for my kids to be on their own and to ‘get things’). I had decided we were going to tell them the truth about the Easter bunny. After all, J was almost done his first year of middle school and W (even though she’s almost a full year younger than…
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Prepping for an IEP
J’s IEP is coming up this week. It’s something I’ve been doing for as long as I can remember. I have binders full of Assessments, Evaluations, Re-Evaluations, Progress Reports, IFSPs (an IEP for kids under 3), IEPS (an Individual Education Program once a child turns 3),and behavioral assessments. I even have copies of “my rights” as a parent of a child with disabilities from three different states. I can’t imagine what it would be like to be a parent without all of these binders. To just send your kids off to school and collect report cards a couple of times a year. Over the years, I’ve learned some things…
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For Those of You Who are Wondering
While reorganizing our home office over the last week or two, I found dozens of J’s IEPs and progress reports starting from preschool. I’ve been hoarding them like tax returns, not sure if I’m supposed to hold onto them, not sure if I’ll ever need to pull out an IEP from, say, 2008 or if any of that information is still useful. I’ve decided to keep those files for now, and maybe read through all of those reports again in preparation for J’s annual IEP in the next few weeks. J has made significant progress thanks to early intervention, but who knows—maybe there are some underlying trends that are…
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This Mid-Semester Slump
This past week was sort of a bummer week for my middle school kiddos. After two months of working really hard, J started up with some disruptive behaviors at school again. We still aren’t sure why; we’re still trying to figure that out. His principal, teachers, paras, and Steve and I have tried to pool ideas of what it might be. Have there been any changes in routine? Could his mouth be bothering him? (he gnaws cankers into his cheeks and lip like nobody’s business) Could it be daylight savings? (I swear it’s dark by 5 here in Fargo) We’re coming up on the holidays (and once again a change…
