Saturday, February 4, 2012

The Sisterhood of Autism Yoda Moms

A friend I recently met has taken to calling 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! ha!). She's more or less the age I was when Kai was diagnosed. She has spunk, energy and a contagious laugh. She's a sponge. Unlike other moms I have met through the years, she takes everything I suggest or mention and almost instantly, analyzes it and applies it. She's hungry for knowledge and action. She asks a million questions. Nothing is coming between her child and his road to recovery. She says I should write a book because all the information I give her is worth a fortune. I am not sure about all of that but hey, at least I have a blog! As a disclaimer I will say that I am not some crazy mom preaching in every corner. I am just a mom who has gone through a lot of hell in 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. Without seeking it, I have noticed that autism moms, ALL autism moms have an undeclared sisterhood. There are those that have paved the way for me and all the new moms unfortunately starting out. This is not even limited to moms with kids on the spectrum! 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 their opinion on the topic. (if only mainstream medicine and organizations with $$$$ to fund significant studies would reach out as well we might be on to something now in this autism maze...but I digress)

I met her while participating in a mom's group where Quinn attends an extensive mommy & me program. I find myself sharing and reminiscing a lot with her and the moms there. It's so easy to. 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 9 and Quinn is only 2 (and the age of all the kids at the mommy and me), 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 had 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 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, the teachers who successfully went out of their ways to reach him, Jenny McCarthy coming out in Oprah-"opening the can of worms" and going through it in a parallel life far far away - and making autism a household name (love or hate her-she did)and many many other examples. 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 though, 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 to lose a 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 and where to go. 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 so it's easy for me to have my very own go-to, on demand yoda. But even  being on 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 those 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.

KAI TODAY...still working hard



4 comments:

GFCF Mommy said...

Beautiful post, B. I could not survive without the sisterhood, and if we have to be here, I am glad I am in it with you!

XXXOOO
GFCF Mommy

Karla -Warrior Mom said...

I couldn't agree with you more WW (wonder woman)...I am very proud to be a member of the sisterhood mostly because you are part of it. Love you ♥

Karla SD
warrior Mom

Eat GFCF said...

I nominated your blog for a Liebster Award! Check out my blog for the details!
http://eatgfcf.wordpress.com
(Sorry, but I couldn't find any other way to contact you!)

B said...

OMG thank you! Will check it out! So sweet!