Summer break is winding down. In a couple of days it will be August, the Sunday of summer.(Someone once said that if summer is a weekend, then June is Friday and July Saturday. Seems pretty accurate to me.)
I'm not ready to go back to the daily grind yet. We still have doctor's appointments to cross off the to-do list. This morning was Daniel's well check, and Thursday is one for me. Next week are a few more, including a four hour EEG. It's just the last of the "get it done before school starts" necessary stops. I also want to just savor the morning sleep-ins awhile longer.
We have to wait until September for the team meeting with Daniel's teachers and therapists to discuss the autism diagnosis and plan for the year's education goals. Communication. So many years into it, and still the necessary push to make it more meaningful for Daniel.
We're plugging away on the iPad, working on letters and spelling phonetically. I'm pretty sure the current placement at school is not going to understand my focus in this area. I don't care. I know my son, and I am certain that he needs more of a challenge.
He's walking well. I've been making him walk more out of necessity. My shoulder and back demand it. He's taller, heavier, and I'm older and more aware of my limitations. I've switched to a pair of AFOs that were made for him awhile ago that have more flexibility. Unfortunately, we just got the new pair that are the old ski boot model, and I don't think they're working well. It looks like I need to add another appointment to the list and have them redone.
He's also feeding himself more. His diet is mostly liquid, so in our world that means he's holding his cup and drinking without me holding it. He's also suddenly showing more of an interest in food. That's good, except when his hand mouthing habit and eating intersect. The guacamole he dug so much at the Mexican restaurant we stopped in on the drive home from Illinois was case in point. Slimy green hands are no fun in public!
Daniel begins eighth grade in just a few short weeks. I'm going to try to enjoy this last bit of summer in between the obligatory doc visits and school supply shopping trips. Tonight we'll walk around the neighborhood when it cools down. I want to enjoy every last second before the alarm clock again rules our mornings.
4 comments:
I have every confidence that the heart of the mother will insure that those things which are important for Daniel will be embedded in his IEP, despite the opinions of "professionals." If the heart does not prevail, I know someone who breaks kneecaps for a very nominal price!
We, too, have an IEP in September, and I feel so resigned toward the ineffectual nature of the school system that it bothers me. You've inspired me tonight to perhaps soldier on and renew my ambition for brighter things for my own daughter.
Elizabeth, I was resigned too. I talked to someone at the disability conference about Daniel's communication piece at school, and I realized I was completely beat down and had given up. She told me to pursue the autism diagnosis so that we can MAKE them address it more fully. I still don't know if it will make much of a difference in the daily schedule. They do what they're gonna do most of the time.
I still feel so new to this journey and you know what scares me? I am tired already. Not sure what to fight for and ask for and what to let go. Overwhelming and in those moments, the path of least resistance seems easier. Maybe not what is best for Zoey.
In fact definitely not So as Elizabeth says, I will soldier on. Which I know I have posted this before, but those two words have become my adopted mantra ... 'Soldier On". so much so that the wild child still in me, might just have that permanently inked on.
Hope you are well and surviving the heat, which has found its way Westward. Not a fan.
Best to you and your sweet boy.
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