A friend who recently came into my life now calls me her "Yoda." I always laugh. For one, she reminds me of myself at her age. No, she looks nothing like me. I wish! She's super hot! She's more or less the age I was when Kai was diagnosed. She has spunk, energy, and a contagious laugh. Unlike other moms I have met through the years, she takes everything I suggest or mention and almost instantly, analyzes and applies it. She's hungry for knowledge, for action, and she asks a million questions. I should write a book, she says, because "all the information I give her is worth a fortune." I am not sure about that. I am not some crazy mom preaching in every corner. I am just a mom who has gone through a lot of hell through this autism journey. Because of it, I get a lot of questions. Often. Everywhere I go. On Facebook. At the mall. Via text. On the phone. On Twitter. In person. At the supermarket. Other moms refer me to other moms so that we can offer support and share stories. Autism moms have an undeclared sisterhood. Unfortunately, others have paved the way for me and all those new to this life. Even women who are pregnant, with newborns or with kids showing a delay are reaching out to autism moms for advice on how to prevent autism or at the very least, get our opinion on the topic. If only mainstream medicine and organizations with funds for significant studies would reach out as well, we might be on to something now in this autism maze, but I digress.
I met Erika while participating in a mom's group where Quinn attends an extensive mommy and me type program. I find myself sharing and reminiscing a lot with her and the other moms there. Every time they mention something they have a question about ( "vaccines" " diet" "therapy" "depression" " stress"" IEP" "education") it triggers a memory of all I went through when Kai was little, and I can't help but share. Since Kai is now nine and Quinn is only two (and the age of all the kids at the group), it's been quite a while since I was in "that" starting place they are all in now. I guess I just took all of the knowledge I picked up when dealing with Kai 7 years ago for granted. The second I saw Quinn started with a delay, it was on! I instantly knew how to deal with it without the need for a "Yoda" the second time around.
All of this got me thinking about who my "Yodas" were back then. It was all so hard to navigate. I don't know if I applied everything as quick as my friend has. Perhaps because a lot of it was "new" back then and has become a little more accepted now. I soaked everything in, but sat on the information until I was ready. It's my methodical nature. There was the teacher who gave me a book on autism to read as a "hint" to get him evaluated, the other one who constantly lectured me on "diet" (which I ignored only to try it years later), the endless Yahoo Groups on Autism where I learned what other parents like me were doing, the book DYLAN'S STORY by Cristin Fergus which kicked me into further action by removing harmful toxic products we were using in our everyday lives, the therapists who insisted and tried different tactics to get him to master tasks, and the teachers who successfully went out of their ways to reach him. Those were some of my Yodas.
It also got me thinking about just how much Kai has overcome since 2004. The work is not done. He still has a lot to learn and conquer, but so much work has already gone into his recovery attempt. Perhaps recovery is not likely (and we know that), but we still try it all to make his life better each day and for his future. I have noticed that the older Kai gets, the sisterhood and finding said Yodas is a little more difficult and sparse. Said sisterhood is now more settled and even more divided. Some kids have moved on and lost the diagnosis. Some of us are still treading water with only brief moments of rest. Some have lost hope and given up altogether. Some don't want to speak to others unless they are following the same treatment avenues or non-treatment avenues they are. Some are overly critical of what other moms choose to try for their kids. I just think it's important to remember that we were all where my new friend is today; in that starting point looking for direction. It's important to be ambassadors to other moms and offer guidance when asked. I am lucky to have a close-knit group of friends that I can still talk to about Kai because they have gone through it with me and are in my same shoes (unfortunately). My best friend also happens to have a child on the spectrum making it easy for me to have my very own go-to, on-demand Yoda. But even being in the same boat, I have also experienced icy receptions from moms of older autism kids for no good reason. Go figure! Bottom line? It's harder to find those Yoda moms the more time goes by.
I am so happy I get to share all my tips and experiences with my new friend and the other moms I encounter.
Yoda or not, truth is, I like to help. All of the experiences I went through make me who I am today. Maybe some things did not work for us, but it will for them. I am always careful to point out that what I share is just MY experience and not gospel.
It's a club no one wants to be a part of, really, but once here we are all in it together.
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| KAI TODAY...still working hard |
