Lainie’s IEP today was a hard pill to swallow.
I’m so grateful her teacher had called a few weeks ago and gave me the heads up that it didn’t look like she’d be heading to kindergarten next year. She doesn’t qualify for a para and doesn’t have the speaking skills or confidence to talk in a classroom full of kids. She barely talks in front of her class of 10 or so. As her teacher put it, “If Lainie needed help with something, she wouldn’t ask the question to get the help she needs.” That statement alone helped me be at peace with her needing to wait a year. No big deal, right?
But it is a big deal. That was the goal, to keep her on schedule with her age group, to try our best to get her to prepared for kindergarten on time. Three years of speech therapy, 2 years of preschool, so many learning games and practices and speaking stuff at home… but it wasn’t enough.The seizure-related damage won this round.
Well, today I feel like I got a second gut punch. Today’s IEP was a full assessment. It not only discussed speech, but also looked at cognition, OT skills, behaviors, etc. Any cognition delay or hesitance to play with others could be attributed to her lack of speech. But OT delays? Not so much. And OT delays she does have. “Significant concerns” I think is how the occupational therapist put it. And that hurt.
Then, Jay asked about her getting an OHI (Other Health Impaired) tag. That’s the same label my brother has. I wanted to scream, Lainie’s not handicapped!! But in some ways, I guess she is.
And then the idea that she’ll need help for years… oh my lord, it just hurt.
It’s not just a speech delay? She’s maybe not tracking across midline? Need for occupational therapy? Cognitive deficit? Long-term assistance?
Seems the seizure did a lot more damage to little Lainie than I thought. Seems the shadow of that horrible week will be looming for a while longer.
And yet, I have to keep telling myself, she’s here with us. We’re lucky she’s even alive. She has come so far! She is a determined little girl. She is a joy, she is happy, she is perfect. I know all this, I really really do. But right now, I guess I’m grieving my hope for her recovery. Right now, I’m readjusting my expectations for her, at least for the next few years.
So, what’s the plan? Preschool this year and probably next, maybe summer school. OT twice a month for 20 minutes each time. Speech 10 minutes 4 times a week at preschool plus speech twice a week for 45 minutes at K-State. One on one breakout time at preschool. Maybe start some sort of dancing… the OT gal said that could help, too, and you know she’d love it. Medically, weaning from seizure medicine this summer for a repeat EEG to check for seizure activity and probably an MRI and/or CT scan to check for any concerns in her brain, maybe see any areas of atrophy.
But this weekend? The plan is to just have fun. Paint some nails. Watch sisters’ 4-H demonstrations. Eat pizza. And remember how lucky we are to have her here.
Lord, I would rather endure a million sad, painful meetings like today than to experience one day without my Lainie Sue. Thank you for the gift you gave us, and for the reminder of how precious and precarious that gift is.