the understanding 5000

one of the hardest things about being a parent is knowing is what is best for your kid. i mean- should they do soccer and t-ball, or ballet, or piano- or all of it. but when you have a kid with special needs or learning challenges- the plot thickens. not only do you have the challenge of what they "should" do (and what they "can" do) in the "regular" world- but you need to decide what therapies they "need" or should do. i put that in quotes because there is no formula. at least not that i've found. there are different schools of thought. ABT- applied behavioral therapy vs. floortime. do you do OT or PT or both? do you do sensory integration work with Tomatis or OT, or both? do you do vision therapy? social groups? what about hippotherapy? what about cognitive behavioral therapy? or medications? do you go gluten-free? casein-free? supplements? do you put your kid in a "special school" or with "typical kids"? how do you make these decisions? who do you listen to? do you really know your kid? does an expert know better? who synthesizes all this? is there any data out there to support any of it?

believe me, i wish i could answer that. i wish i could give you the latest updates on the therapies- a break down of who does what and what works for who. instead it seems to end up being a lot of trial and error. a lot of "well if it worked for him maybe it will work for her." a lot of options and not a lot of clarity. so you do your best. you try to know your kid and see what "makes sense" what sounds good- what sits well.

and sometimes you try it anyway. even if your totally not sure - even if you're not sure how it sits. because it's your kid. and what if it really does work? that is where we are right now. about to embark on a summer of "Brain Balance". not sure if it really makes sense. pretty sure i'll be cursing myself driving back from roswell three times a week at 4:30 (i'll try my best not too). shocked at myself for trying "the diet" for the summer. (zoe currently lives on carbohydrates and milk- should be fun.) but like i said, no one convincingly knows what "works". we've been in OT/ PT for most of her life. she's done social groups for years. we've tried mainstream public school and two other "special schools". she's done mainstream camp and special camp. she's seen psychologists and psychiatrists and been on meds. has it helped? yes. what has helped? who really knows. maybe it's a committed extended family. maybe it's the knowledge that we won't give up on her. maybe this gives her hope. i don't know. we're more than half way through her childhood. 7 -8 years left. so you do these things- because you love her. because if listening to one type of music, in one ear will help balance a clearly unbalanced brain- then i'll try it. because i want so badly for her world to be easier. for her future to get better. for the fog in her head to clear.

this week has been tougher than last. yesterday she was frustrated coming from her weekly school visit. she said things have changed there and it's hard for her. she had a hard time understanding what the kids were saying to her. she wanted it to not be so hard.
but - she didn't yell, she didn't get stuck in a spiral. she just talked - granted a little circularly - but she got it out. she wanted to be understood.
"did you feel like this when you were 10?"
"kind of"
"it makes me feel alone."
"i know- everyone feels alone sometimes. that i understand."

i went in to pick up the boys and when i came to the car, she said she had a great idea. she suggested her dad build her a robot called "the understanding 5000" that can follow her around and tell her what people mean and how she should respond. it was kind of funny. it was kind of sad. but- it's progress. insight. becoming real. she recognizes there is a need. she wants to learn this. she's willing to.

i say we have 7 or 8 years with her, but really in someways it's less and more. because in a few years she might not be interested in eating casein free, or talking to a therapist. she might get sick of doing OT. and in someways we'll probably check in on her in her early adult years - more so than other grown kids.

so we seize the day. the moments that we can. the times when the ground is fertile, the brain plastic, when she wants to get it. and perhaps the clouds will part. others faces will make more sense. her filter will strengthen. and her years will become easier. and if not, mike will have to get to work building "the understanding 5000."