From the light coming through the wood blinds in our bedroom, I’m guessing it’s around 7 am. The fact that we haven’t traded the blinds in for something that actually blocks the morning light is indicative of how we’re living these days, as witnessed by the other things we really should get to but never quite find the time. Like the paper blinds hanging in our girls’ new room for the past 3 months. At any rate, its much later than most people wake up for the day, I realize, but then, most people haven’t been up most of the night. I’d love to bury my head back under the covers, but the little lump next to me reminds me that I need to get up and get going. He looks so sweet in his slumber. I do wish he would have slumbered a little earlier, but am thankful he’s getting rest now before he has to get up as well and head to preschool.
The fact that he’s even in preschool during these summer months is a minor miracle. Ok, providence. But considering there aren’t exactly choices for kids with special needs and the one choice we did have filled up the day registration opened, I’m thankful. Even if he is in the Spanish Immersion class. Yep. Spanish Immersion for the kid who has apraxia. I thought it was a typo on his registration form, but no, he was placed in the only class there was room and that was Spanish. And that’s actually really funny. I had to laugh again when his sweet para said, “Just so you know, I go by Senora So-and-So in class.” I blurted out, “Just so you know, we’re still working on English.” Seriously. Can we please get a handle on, “That’s a boy, so we say ‘he’,” or “She’s a girl, so we say ‘she’,” before we add a whole other language to the mix?
He’s doing fine in his immersion class, of course. His teachers speak English to him and he loves to sing the songs in Spanish too. Even if “Como estas” comes out “Coma Miss Don”, we’re happy he loves it. That’s a good thing because preschool for special needs kids is not cheap. We are paying $2000 for him to go three hours a day, three days a week, for 11 weeks. Sure there are free options through our school district, but not in the summer. Not for kids who would not otherwise “regress” during the summer months, although I’ve never really understood how that’s determined. And even so, not for more than a few weeks throughout the entire 3 months of summer. So, we are foregoing getting our floors refinished or new black out blinds for pre-k. He’s worth it.
By 8:15, we’re up and on our way. Getting ready to leave the house, actually leaving the house, riding in the car, and getting from the car to the classroom are all a lesson in patience and perseverance. One misstep or misspeak and we’re in trouble. We plan everything carefully, giving warnings at 10, 5, and 2 minutes out and then making sure we don’t detour whatsoever from the normal routine. I answer the same exact question 52 times on average during our 30 minute ride. “Where are we going, Mom?” I’ve started saying, “You tell me.” after the first 5 times or so, but somehow that just doesn’t satisfy. Once at school, all 40 pounds of him must be carried from the car to the classroom. This is why I live with a hole in my eardrum which needs to be surgically repaired. I cannot have it fixed until he no longer needs to be carried. Pretty sure he’ll be 10 and by then I’ll be used to being half deaf in one ear. It’s comical. All of it.
Since it’s Monday, we have feeding therapy and occupational therapy after class. I have discovered a few things about therapy over the last few years. One. Most therapists are 20-something and don’t have kids. Two. Most therapists want you to implement everything they do in therapy at home. Three. Most therapists are super sweet, but don’t get that their expectations are not actually adaptable to the real world (i.e. at home where said child in therapy acts completely differently than he does while in therapy and there are two other kids who kinda need to be raised as well). Four. When I mention this to most therapists, I get a blank stare. Five. I have tremendous respect for all of the therapists we’ve seen (I do not have anywhere near the skill set they do), except the one who told me to give my 9-month old whole blueberries during our first round of feeding therapy. Not so much for her.
At 2pm, we’re done with therapy and that’s a wrap. We’re heading home to play Mario Kart, jump on the trampoline, and eat a couple popsicles until my husband gets home. I don’t often talk about the mundane of our day to day because so many live the same thing in a different house, on a different street, in a different place. But it really isn’t mundane to us; it’s life. Some days, it’s hilarious and others it’s frustrating and infuriating. But it’s all covered in grace and we’re finding there are so many things you either laugh about or you’ll cry. We usually choose to laugh, but then we have one kid with disabilities, needing therapy and services that are crazy expensive. I’m sure I’d be crying more often if I were in the place of some of my friends. They are heroes of faith and perseverance in my book.
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