Wednesday, June 22, 2016

At the park

This morning I rounded up the kids and, in anticipation of staying indoors because of a rainy afternoon, I told them we were walking to the park. Our toddler, C, was going FULL BORE FOR PARK EXCITEMENT and the 5 year old, E, was somewhat amenable to a park trip. But P wasn't feeling it. It wasn't until I reminded him that the park had a net he could practice climbing that he started to perk up. I think his hours in OT are paying off because he seems stronger and more coordinated this summer, and he's able to really enjoy more of the park equipment.

Once we got to the park I settled myself with my knitting and kept and eye on the kids. P somehow wound up playing with two other was some kind of "giant spider versus insects with lightsabers" kind of game. I watched in amazement as he played appropriately, chasing, being chased, adding to the narrative. He wasn't 100% typical - his current obsession is Pokemon and he talked a bit about summoning different creatures to attack - but it was close enough to play for about half an hour with the kids. I have never, ever seen him in a situation where he jumped in and interacted with the other kids. I was on the edge of my metaphorical seat, ready to jump up and redirect him when the time came...but it never did. I left when C became fussy, partially because I wanted to leave while the interaction was still positive, but it gave me some hope. Maybe he's starting to come around. Call it maturity, learning skills, not having the baggage of having been identified as being "the weird kid" of the class, or just luck in finding two kids who don't mind playing with a kid who's pretending to be a giant spider, it made my morning.

Tuesday, June 21, 2016

Science Night

When I backed out of my driveway to go to Science Night at our local science supply store, E was clutching her giant plush Lyme Disease microbe and P was enthusiastically singing "Why Does The Sun Shine" by They Might Be Giants. They were in a very science-y mood, and I figured it would be a good night. And, for the most part, it was...E had a bit of a tantrum as we left because P had more opportunities to participate than she did, but overall, it was a great time. We were there for an hour and a half watching experiments, making things, and meandering around the store. It was really nice.

When we were driving there I was actually concerned. Indulging the kids' interests is basically the same as encouraging them to be weird. Well, actually, that's kind of harsh...but I can't figure out a way to integrate their interests with behavior that's considered socially acceptable by kids their chronological age. I wondered if I should encourage more typical interests instead. But when I pulled into the parking lot and found another family exiting their minivan with kids who had decided to cosplay for Science Night, I figured that if I'm making a mistake at least I'm not alone.

Sometimes I watch my sister or my friends with their kids, and I marvel at how the kids do what they're supposed to do. It's not automatic - it's with a lot of hard work on their parents' part - but they send their kids to school and the kids learn ABC's, have playdates, earn Little League trophies, and meet milestones. Others have difficulties, and things come more slowly or develop differently. There are IEPs and medical procedures, and milestones are met long after they were expected. I feel like I'm on a different path with my kids, flailing away in the tall grass trying to cut a passage for us, wondering why this all seems so hard.

Last night I had a vivid dream where I was walking out of a school with someone I used to work with. We were catching up and she asked me how the kids were, and I blurted out everything...all of my fears and worries, about how we were "counseled out" of another year at their elementary school, my fear that they wouldn't be accepted at their new schools either. She gently stopped me and said, "Don't worry. Just do this." Then she wrote me out a step-by-step process to ensure that the kids would be okay. Before I could read it, though, she gently took me by the shoulder and guided me to a low wall where we sat and she hugged me. In real life I'm not really into getting hugged by acquaintances, but apparently my dream self is much more amenable to affection because I just leaned on her and let myself be comforted. I woke up frustrated that I hadn't been able to read the paper, as if it would have actually been useful.

I suppose I just need to stick with the friends I've made who are out in the tall grass too...maybe not on my same path, but still flailing away, trying to find some direction for their kids who don't fit in.

Thursday, June 16, 2016

Little smarty

Today was my first day home with the kids, and it was pretty good. Not sunshine-and-roses awesome (if anything my middle child, E, was more headstrong and smart-mouthed than usual), but it was nice. This afternoon we went to the dollar store to get supplies for building habitat dioramas (as you do the first day of summer break) and the library. We were taking a longer route back home that would take us through the park and around the duck pond. As we walked along, my backpack full of construction paper and markers, and the tote bag on my shoulder full of books, my toddler, C, started singing to herself. Arms flung wide she sang, "This little smarty of mine, I'm gonna let it shine. This little smarty of mine, I'm gonna let it shine." Over and over she sang in her happy little girl voice.

I was really surprised because I never taught her that song, let alone these amended lyrics. But was we walked along, it felt so appropriate. I didn't realize what a strain school was until it was gone. Now I can just let my kids do their own thing, and shine in their own way.

It's going to be a good summer.

Tuesday, June 14, 2016

Last Day

Monday marked my kids' last day at their school...not just for the school year, but forever. Next year they'll be off on new adventures that don't take place at their neighborhood school. The one within walking distance. The one my son started four-year-old kindergarten in. The one that made us buy this house we're living in now, just because it was in that school's attendance area.

I'm still dealing with some bitterness.

On Monday I kept an eye on the clock and smiled when it hit 2:30, because my kids were done with class, and breathed a sigh of relief at 4:10 because I knew my husband had picked them up from the after-school program. They had walked out of that school and wouldn't be back.

On the way home I rolled the windows down and cranked up my car stereo. It took three rounds of screaming along to a full-volume rendition of "Factory Girls" by Flogging Molly to shout out my anger, frustration, disappointment, and hurt. Today it took one play each of the Foo Fighters' "My Hero" and "Monkey Wrench." So that's progress towards acceptance, right? 

I'm making progress, but I'm still so mad.

I'm mad that I sat in that principal's office talking about a special ed referral and believed her when she said, "We don't want a label, we want information. We aren't doing right by him and we need to know more about him."

I'm mad that they discounted the resulting information when it didn't provide an autism label.

I'm mad that this year they took every opportunity to show me the ways he was average, or not measuring up.

I'm mad that the school psychologist offered her help, but after I signed consent for her to work with him, she didn't see him. Not a single time.

I'm mad that the "educational plan" that was supposed to serve as his gifted education plan consisted of remedial writing goals, and was never really implemented or revisited.

I'm mad that his teacher thought he was lazy, and not that he had a fine motor impairment. I'm mad that she attributes his improved handwriting to improved effort, and not to the hours he's spent in occupational therapy.

I'm mad that my husband and I are the only ones in my son's corner. The teachers, the principal, the other the end of the day, the only people who are fighting purely for my son's best interests are my husband and me.

And most of all, I'm mad that I'm going to move on after all this frustration and hurt, that my son is going to move on after feeling like a fish out of water all year, and the school won't feel an ounce of it. Not one iota. They're just happy he's gone, and they don't feel that they're in the wrong at all.

I'm trying to let it go. Maybe on my commute home tomorrow I'll have one more screaming song, and then I'll move on with summer. Museums and library trips and exploring and sunny days in the backyard and loving my kids unconditionally for who they are and where they're at right now.

Friday, June 10, 2016

It takes a village

This week while at occupational therapy, P seemed to be attending to everything but the task at hand, looking all around per usual. After several failed attempts at a task, his OT looked at me and said, "Can he see?"

"Of course he can see," I replied, taken aback.

"Have you had his eyes checked?" she asked.

"Well...kind of..." I said, doubt creeping in. "They check at the doctor. But he can always see the smallest line on the eye chart."

"Let me see," the OT replied. She led him to a quiet treatment room and asked him to follow her finger with his eyes as she moved it in a big circle. He tracked her finger around, his eye movements surprisingly choppy. But when her finger moved around to his left eye he stopped following it and just looked around for it. She tried it again, same result. Next she moved her finger back and forth in front of his face, and he lost the finger around the same place.

I felt confused. How could he not see? And he was trying to track it...gritted teeth, hands gripping the seat of the chair, he tried to move his eyes to follow it. He just couldn't.

So this has kicked off a whole new slew of issues. After my initial freak-out (Is it seizures? Did he have a mini-stroke? What causes motor delay, general weakness, and visual tracking issues?) I found that visual tracking issues can be caused by one of the infant reflexes if it fails to integrate...and P's has. I guess ATNR integration failure is just the gift that keeps on giving. However, it's not a terrible thing and it's definitely treatable. Treatable to the tune of $5000 that isn't covered by insurance, but still treatable.

However...P is down to going to OT only once a month. I had started to consider adding in another therapy. Vision might be a possibility, depending on what his pediatrician and ophthalmologist think. But if not vision, it would either be speech therapy - it's time to face up to the fact that those r sounds are just not going to come in without help - or some kind of counseling to help with his emotional regulation. Adding in the possibility of vision therapy made me ask, once again, how many professionals is it going to take for me to raise my child? How much professional help will it take for me to do what every other parent on this planet does by themselves?

And yes, I realize that taking him for therapy isn't a failing on my part. It's actually a good thing. It's helping him be the best kid he can be. OT has been wonderful for him and I'm so happy he can have access to this help.

But knowing that and feeling it are two different things.

Saturday, June 4, 2016


"BOOSH!" I said, laughing, imitating the sound of the explosion I had just watched on the screen. My son, P, and daughter, E, jockeyed for position on the couch, each trying to get the best view of my iPad mini, which was currently playing a video featuring people dropping alkali metals into water. It had started with watching The Periodic Table Song, which led P's request to Google the element Technicium. After reading the Wikipedia article, which I understood roughly 5% of, I reverted to watching YouTube videos of elements that explode when exposed to water.

I loved the look of wonder and awe on the kids' faces. They wanted not only to enjoy the explosions, but to understand the why and the how behind them. Today it seems that half of my Facebook friends have children, grandchildren, or nephews in Little League, and they're all sitting at games. Athletic ability is definitely not something that's spread evenly among the population, and my kids are evidence of the fact that some kids just aren't blessed that way. We are not a sports family, and I doubt that we ever will be.

"Want to see what happens when you drop molten aluminum in a swimming pool?" I ask, and my kids giggle in anticipation.

But I wouldn't trade these experiences. Traditional sports may never be in our future, but this is not such a bad exchange.