July 4, 2008

To Lisa Ackerman and All the Moms Who Had Time for Me

In the spring of 2004 on a Friday I walked into my first autism conference, a little one in Long Beach, California.

Chandler had been referred to the state only a few weeks earlier and that very day Scott was with him at his first formal evaluation. It was a lonely day with an overwhelming flood of information that I barely had any context for yet, punctuated by phone calls from Scott and the speech language pathologist to ask questions, and, of course, a lot of tears.

How in the world was I possibly going to be able to do all the things that these people were talking about?

Saturday was much of the same, except not quite so lonely as Scott was able to join me.

That night was one of those conference dinners, and we decided to go to see if we could make contact with someone who was actually managing with it. We plopped down at the first table we walked by and a very friendly woman introduced herself and wanted to know all about us and our son. That is how I met Lisa Ackerman.

She was the first biomed mom that I ever met and God could not have been more gracious to us in choosing her as our first contact. She was cheery and funny and encouraging and answered all our questions and gave us lots of advice and convinced us that night that we could do this. And the thing that she said that convinced me that we could do it was that she noted that I was not at the conference by myself. That my husband was sitting next to me, holding my hand, and that not too many moms at that stage have that kind of support from their husbands right out of the gate. That some dads never joined in and that some dads even left. If they could go it alone and make their kids better, we could certainly manage it together.

Scott and I walked out of that dinner smiling, partnered, and with real hope that we could get our boy to come back to us. And for the most part, he has.

You can look back on life and pick out very important conversations that you know God had to have arranged, because they ended up meaning so much. We call them Divine Appointments.

And Lisa was just the first in a long line of Autism Moms who had time for me.

Shortly thereafter when I started reading the vaccine research and wrestling with the questions of what did the government know and when did they know it, I stumbled across a web site called Safe Minds and dialed the number listed to try to confirm that what I thought had happened had actually happened. The call rang straight through to Lyn Redwood's cell phone and she sat in an airport waiting for a flight and patiently answered freshman questions from a still naive young mom who could not quite wrap her brain around the fact that the government and her own pediatrician would knowingly inject mercury into her babies.

I don't remember the words of the conversation, but I feel like it was something like this:

Me: "...but he told me that they took it out by 2000".

Lyn: "They didn't".

Long pause as I tried to internalize the information.

Me: "But if they tell us not to eat tuna when we are pregnant, why would they let it stay in vaccines?"

Lyn: "We don't know."

Another long pause because I could not really believe it.

Me: "Well what do they say when people ask that question"?

Lyn: "Nothing."

Yet more stunned disbelief....

And then there was the wife of a successful hollywood producer who was the acquaintance of a friend who didn't know me from Adam, that called me out of the blue and insisted that I come over immediately and meet her son. She told me about how he was completely non-verbal and wanted me to see how verbal he was now and tell me about floortime therapy and what schools I should look at and what speech therapists I should try and on and on. She wanted me to see with my own eyes that her son got better and mine could too.

And there was Bobbie Manning who patiently explained to me what the hell was going on in Washington...

And there was Sym Rankin who I called 14 times to figure out how to spell Phosphatidylcholine...

And there was Michele Brock who answered a question on an autism list and told me about the autism services available in the small town in Maine we were thinking of moving to...

And there was Holly Austin who let us come to her cabin by the lake to rest and didn't mind when my son threw up on her rug...

And there was Shannon Johnson that help me set up the HBOT chamber yesterday, and didn't laugh at me when I had a panic attack inside of it...

And there was Jenny for stepping out in front of us moms who were killing ourselves to bring attention to the cause...

And there is every parent who ever sent me an encouraging email...

So to Lisa and all of you since who have made time for me and propped me up with all your encouragement...

Thank You.


I am sorry that you had to be in this club with me, but I am so grateful for all of you.

4 comments:

shannonj said...

Ginger--what a nice tribute. In all honesty, none of us could do this alone. We're in a sisterhood that is thicker than blood because it involves our babies, our future and our very heartbeats.....
Shannon

michelesbrock said...

Ginger - You are one amazing woman! Thank you for being our voice and such a dedicated friend. Together we can and do make a difference!

K Fuller said...

Thank you to those currently on the front lines. You are making such a huge difference.
Those of us who started this journey a decade ago did not have the resources available today. Even the internet for research wasn't the same as it is now.
Those of us fighting this battle for so long became weary of the search for an answer for our childs decline and the lack of attention to Autism. We became weary of being told to just accept our child as he was and that Autism was our of our control. HA! We all have new hope, and I get such strength from those who are finally bringing Autism to the forefront. People who never believed that our child was not born this way are finally seeing that I am not delusional, I am being realistic. It is not a fluke that our son recovered language. Our being obsessed with his recovery has been worth every second. I thank all of you who keep the fight visible to the world. You are making a huge difference to all children with Autism and validating all of us at the same time.

hopefaithbelieve said...

And thank you, Ginger, for having a blog in place (one of the first I found) once I became a member of this club. Just as you are thankful to those who gave you time, I am grateful that women like you have made lots of information available. Mostly, I am grateful that other moms have paved the path of hope before me.