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Blue Lights
Two weeks ago J and W were in the middle of DSW, patiently waiting for me to decide between five different variations of the same white sneaker. I walked down the aisle going back and forth between the shoes on display, while the kids dragged their feet behind me. “It’s lunchtime mom, I’m hungry,” said J. It was actually way past lunch time. It was 2 in the afternoon. I knew he was anxious, but I knew I still had probably 15-20 minutes until we were in the pre-meltdown zone. The kids had a snack before we left, which was how we gotten to this point, but J has ideas…
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Full Catastrophe Living
The turn of events this week are all because of one teeny tiny mistake. I thought J would picture this week in the exact same way as I pictured this week. I do this sometimes. I remove me and J from the world for a little bit, we work hard on hard things together, and then I expect us to end up at some better place I’ve created in my mind. I’m not shooting for the stars or anything. Just a small, positive change. One step forward instead of three steps back. That’s all. No Disney inspirational movie making plot here. I’m just looking for baby step progress. This is how I saw this week and…
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Where’s the Smart Boy’s Guide?
Emotions and middle school are such an awful combination–for parents and kids. W had the bulk of her frustrations at the beginning of this year. Understanding social drama is hard at this age. I looked online for resources for middle school girls and emotions, and not only did books come up for parents, but there were dozens of resources for middle school girls. I ordered three books from the American Girl Smart Girl’s Guide series: A Smart Girl’s Guide to Knowing What to Say, A Smart Girls Guide Drama, Rumors, and Secrets, and A Smart Girls’ Guide Friendship Troubles. I was SO impressed with all of them. “How to compromise with your parents and teachers. What to do…
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Making Pictures out of Words
One of J’s biggest academic struggles is with reading comprehension. In the beginning he was a fabulous reader. He could sound out words and burn through the early reader books because he’s good at individual words. He loves to figure out how they work together and what the rules are for putting them together. He’s always been a kid who wants to know the rules. (As I’m typing this I’m wondering if we should be reading poetry with this boy to help him build those images and other sensory experiences with words…) There was even a time where he was obsessed with synonyms, antonyms, and homophones. Especially the homophones. He just thought…
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Learning How to Learn
It’s taken the second semester of grade 7 to feel like I’m finally understanding how to reinforce what J’s learning at school at home. I feel like we’re starting to get a good system going with J’s paras and teachers in how to modify assignments, tests, and practice assignments that will help J learn the best. J’s strengths lie in memorization, and he does really well with flashcards (homemade ones or through Quizlet. Are you familiar with Quizlet? It’s a wonderful free little app that lets you practice through flashcards, matching, definitions, etc). He’s funny with the memorization though. You give him a map of Africa and he can…
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Negotiating Space
I have a world map and a map of the US folded and stacked on top of my jeans in my closet. J’s framed Imagine Dragons poster is also in our room, leaned up against the foot of our bed. They’ll be there until Tuesday, fingers crossed, until J earns the right to have them back. Right now when I get dressed or go to bed, I have these visual reminders of how much space J can take up in my life. It’s easy to let J overtake every aspect of my life. Space is something I have to fight for. It doesn’t just happen. I got married young (just shy of 21).…
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Life Lately
When J was little I treated his life and experiences as a recovery. I was going to make him better. I knew there was no cure for autism and that because of the complex nature of the neurological disorder there might not ever be one. But I was on a mission to make as many of his symptoms disappear as I could. I was going to make him as non-autistic as possible. I was going to fix him. I cringe when I think about the perspective I had. I would like to think I’m independent and strong and noble, that I see the injustices of discrimination in the world and I stand up for “the…
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Reconciling the Present with the Future
I think it’s almost impossible as a parent with a special needs child to not be constantly thinking about the future. I’ve been guilty a million times over. I’ve kept a running list of potential professions for J since he was 5. -At 5 I thought he might have a potential career as a mail carrier. He created mental maps and physical maps of the neighborhood constantly, complete with Christmas lights, basketball hoops, and flags. The only big hang-up was dogs. At that time, J was terrified of dogs. -I’ve gone back and forth on the idea of a grocery store bagger or even cashier. It’s a low skill job, and…
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The Well Child
At the two year well child visit, J threw an epic tantrum in the examination room. I was alternating rocking W’s car seat with my foot while trying to wrangle J at the same time. Our Illinois pediatrician slipped out of the examination room and returned quietly with a photocopied piece of paper that looked like it was taken from 10-year-old medical textbook. “It’s some information about tantrums,” she said with a tentative smile. “Read through it. It’ll give you some tips.” I did a quick scan in the parking lot when I had the kids immobilized and secure in their car seats, both of them screaming at the top…
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Adaptations and Modifications
It’s been about a month since J’s IEP meeting and I’m really excited about some of the ideas the team came up with. I guess that’s what happens when you get over a dozen people in a room to discuss J. The hard thing about J is that there is no academic setting he really fits into. J is what I call “middle autistic.” If you think of a line graph where “low functioning” is on one side and “high functioning” is on the other, I would put J smack dab in the middle. So where do you put an “in the middle of the spectrum kid” in the public school setting? He would be…
