September 11, 2012
The Bare Necessities
I may go by "Peach", but lately feel like a pile of pulp, dualing a giant scowling strawberry. Let me explain. It's 2am and I should be in bed catching much needed zzz's for a 7am wake up. But no, I'm up, trying to wind down from yet another twilight zone experience with my son's school. Oh, for the calm days of summer again.
My son deals with sensory integration issues. He can't eat at school because of an overloaded sensory system, with no real supports in place. Even though we've worked for over a year to convince the school of his needs. It seems that this school feels they know better than pediatrician's, dentists, and feeding therapists. Momma just sends the wrong food, you see. Those are the notes I deal with on a daily basis, while I'm exhausted trying to spoon-feed my son ALL NIGHT LONG to get in enough calories to make up for the ones he missed in a six-hour school day. He is a very picky eater. We're talking crazy picky. If it isn't the same blue lid on the same brand vanilla yogurt, he won't touch it, kind of picky.
So today I happened to run out of it. And had to send strawberry instead. At home, I can get him to eat the strawberry (only 2 vanillas come in the package, so we are stuck with strawberry if I can't get him to eat them as well), but I have to tell him it is made out of vanilla milk, not strawberry, and he will eat it and LIKES it. So I had to send the strawberry to school today and spent the whole drive there, trying to explain to a freaked out little boy that, yes, it is red, like strawberry, but actually made out of vanilla milk, hoping he would still eat it. Because that is about the only thing he'll eat at school consistently (along with lunch meat). All the while, I'm beating myself up over lying to my son about the flavor of yogurt. Trying to figure out a way to explain it to him so he will still eat it. No wonder I feel half lunatic.
The special ed. teacher at school (he is mainstreamed, thank you Lord, but needs extra help at lunch, which he is not getting) will innocently mention to Andrew what he's eating, and then he will refuse to eat it. Juice for example. We can't call anything juice or he freaks and won't drink it. We have to call it by another name. IF the special ed. teacher would JUST COMMUNICATE instead of brushing off these real needs, it could be worked through. But instead, she sends notes saying "he just isn't hungry". He doesn't need a weighted vest. He doesn't need extra time to eat. He doesn't need social skills groups at school, or significant OT. He doesn't need anything. He holds it together all day (on the outside). Yet he is so hungry and deregulated by the time he gets home, he can't regulate himself enough to eat. He has meltdowns and begs not to go to school. He is a defiant little bear. Then his Momma Bear loses it at school. By "loses it" I simply mean I complain instead of working smart. Complaining gets you no where.
Slowly, this Momma is getting smarter, being taught advocacy by the best teacher there is ~ Necessity. Finding advocates to come along side, ready to attend meetings. Yet another stack of documentation, at a major cost that we don't have and could have been better spent on private occupational therapies. Most of all, we have an Advocate above who has promised to go with us. But I still lose it sometimes. I get tired and fail. And I hurt.
You know what, though. My amazing son is worth it all. He deserves everything he needs to help him succeed. If only I had the energy to write about his strengths, the little things he says and does every day that make us laugh with hilarity and smile with so much love we feel we will burst, it would take reams. Someday, I hope to have that energy. But for now, I will just relish those moments and hopefully not let the hard times overshadow the good.
Side note ~ Speaking of Bears & Necessities, that reminds me of my favorite Disney movie. I can still remember the first time I saw "The Jungle Book". I sat glued to the television, with a weird familiar feeling inside. A little lost boy, being raised to believe he belonged in a world that wasn't his ~ taught to live happily with "...just the bare necessities of life".
I couldn't figure out why that catchy little tune brought comfort all during my growing up years. When I saw the same movie as an adult, and sat holding my breath at the last scene, I suddenly realized why. Mowgli, just like adoptee's everywhere, somehow found the courage to cross back over that bridge from where he came, into his own village, his true identity ~ truly spell-binding. I felt it to my core.
(Oh, and did I mention I still feel as if I'm trying to communicate with a few chattering monkeys some days ~ no never).
~ Today would have been my first Mother's 65th Birthday. I wrote this post a few years ago about the significance of her birthday falling on 9/11. I love you, Mom, and so wish you were here. I need(ed) you. ~
Lord, please make a way where there seems to be no way. Thank you for being my Comforter. Teach us. Provide. Heal. We love you. Please help us keep the big picture in mind and not get bogged down by every day demands that overwhelm. Thank you for miracles.Every.Single.Day. Show us the way of Peace, Father. In You.