October 21, 2009
I'm sorry but I just couldn't resist this video, it's so darn cute. My little 2 year old stomping around in his Grandpa's shoes. And it inspired me, he inspired me, as he always does, to think, what is it like to walk in his shoes? So let's talk typical. What is typical? Because your child hits every milestone right on cue, does that make him typical? I sincerely despise that word now being a mom of a child with Autism. I can tell you because Gabe is not "typical" we never have a dull day, and he is more than amazing for it. He is always learning and growing and noticeably so. I learn to appreciate those milestones much more than my "typical" firstborn's, who's came and went and I simply marked it off the list. A new word is exciting, a shared glance is exhilarating, a day in the sand box building a sand castle instead of pouring sand from one cup to another is just down right amazing!
I try to let the glances from strangers, or even those who aren't strangers roll off my back. For how could they know? I must admit that at the first thought of a Autism diagnosis, my mind went straight to "Rainman". Perhaps if I would've understood the Spectrum of Autism, I would've been more persistent in an earlier diagnosis. How could anyone know that when my 2 1/2 year old is running wildly in my daughter's preschool that is not the product of my lack of discipline (well most of the time), but because he has no sense of spatial awareness. He is the child that always needs the wind in his hair. Literally. He needs that stimulation. Wouldn't we all be better for running and feeling the wind in our hair a little more often, rather than waiting for what life drops at our feet. His perception of the world around him is so very different from ours, sometimes I wish I could crawl into his head and just soak it in; and in the same vein I wish I could just unlock it and show him my world too.
When I think about what makes the hair on the back of my neck stand tall, what might come to mind are fingernails on a chalkboard. To that little boy, someone wearing a yellow (yup, he has a huge aversion to yellow) might be his nails on the chalkboard. Every color, every noise, every sensation, is magnified to the nth degree. I often have to remind my self of that and say, how can I help him through this, and the selfish, terrible part of me is saying (in my head), just stop!
When an adult gets down to his level and says, "Hi how are you, blah, blah, blah, fill in the blank", how do I explain to them that there is a fifty percent chance he may not have even understood what they just said due to his receptive language delay. And he may have in fact heard, "blah, blah, blah".
I wish I knew what was in that little brain, and how I could fix it. Scratch that, I don't want to fix him. I love him in every way and wouldn't change him. I want him to lead a successful, full, confident life filled with meaningful relationships, relationships that connect him with the world around him and allow him to see that the world is more fun hand in hand with a friend than alone and 'spinning'. Don't mistake the last few lines for defeat, I will recover my son. We are on the way to recovery. I have seen some absolutely amazing progress since his diagnosis in May. We go to private Speech and Occupational Therapy, intensive therapy through the school district, listening therapy, and I fill in for all the hours in between. I have seen a burst in language, increased eye contact, less sensory seeking behavior and more "typical" two year old behavior, and our newest milestone engaging in pretend play and game play, and loads of gesturing. He's transitioning so much more easily, tantruming less (although that's our biggie) and will even tolerate sticky and slippery stuff all over his hands and feet. We will be doing an intensive 4 day therapy through Project PACE from Oregon in November. I have only heard the most fantastic and miraculous stories from the group and can't wait! I am so proud of his progress in the last few months, and am hoping to introduce tons of new therapies in the future. We're going to be doing alot of work with the connector, that should be fun in public; good thing he has a mom who doesn't care what people think. For those of you who aren't familiar with a connector, think two belts, one for me, one for Gabe and we're attached. It promotes spatial awareness, and togetherness, if you will. I too love that I'm trading in my sneakers for a belt! I have noticed by cutting back, and I mean WAY back on Gabe's dairy, it has made a huge difference. He only gets about one glass of milk a day, no cheese or yogurt. We aren't in a position to go GFCF yet, but maybe in a year. I've noticed increased eye contact and speech sans the dairy.
Slow but sure I'm figuring out Gabe, I'm learning to squeeze into his shoes a bit more everyday, and he's growing into mine. Love you buddy!