Based on what we know about autism and brain development, we know we have until M is six years old to make any kind of monumental difference in her development.
Sometimes I need to step away from my go-mode and really let this sink in and look out for my emotional well being.
I can't begin to tell you what it feels like as a mom knowing that every minute, every second your child gets closer to 6 years old, is one less second you have to make a large impact on whether or not her life can look normal.
My daughter's chance at a quality life rests in my hands, and 99% of it depends on how hard I am willing to work for her for the next 2.5 years.
One autism expert I met with told me, every second that your child is awake, they need to be as occupied, engaged, and interactive as possible. This is how you get real results.
We are taking many steps to make this happen. We took away the TV and I am dedicating most of my day to playing with the kids and interacting. Right now I am trying to teach M the conditioned responses to answering the questions, "What's your name?" and "How old are you?" I say 'conditioned response' instead of 'answer' because she has no concept of what it means to have a name or what age is. But if she can memorize the sounds she is supposed to say in response to that question, she is one step closer to being socially functional. This is the world of teaching a child with autism.
It really is amazing how we have to teach M every little thing. Subtle social cues that are intuitively learned by neuro-typical children have to be taught to M through repetition and tactics to keep her engaged. Sometimes I wonder if it is really possibly to teach a child every single little thing about life.
As parents, we are so emotionally invested in the well-being of our children. And with most children, it's a give and take; parents provide the tools and the children must do the work to use them. In this case, M can't do the work. I have to do most of it for her. Don't get me wrong, it is still incredibly challenging for M, even just learning to answer a question like "What's your name?" is a mountain instead of a molehill. And I am so proud when she learns these things!!! I think I am just beginning to realize how tired this is going to make me, mentally and emotionally. I am hanging my hope on the chance that she can still lead a normal life, and if she doesn't get there I am going to feel like I failed.
I finally read her diagnosis report for the first time. I don't know why it's so hard, but it is. The diagnosis report is so true to who M is, the doctor picked up on so many of my concerns about M without me even having to tell her- she pegged M to a "T." And she still thinks it's autism. I keep hoping it's not true. Denial is a stage in the greif process, right? I guess that one still creeps up on me from time to time.
I am a go-getter when I really want something. And I want this more than I've ever wanted anything in my whole life. I want to give my daughter a fighting chance, and I'm stepping up to bat. But I worry I am going to run out of steam or forget to take care of myself. I worry I'll go crazy. I worry I'll never have a friend who understands how I feel.
I have stayed up too late every night and neglected my homework so I can research and keep learning what I can do to help M. I have become completely obsessed. But with a time limit on my chance to make a difference, I can't afford not to be obsessed. Time is passing every second.