Giving Thanks
By Wendy Fournier
At this time of year, many of us pause to reflect on the good things in our lives. This pause in itself is a good thing. It slows down the treadmill that so many of us live on from day to day, focusing on the short term goal of just making it to bedtime without a major meltdown, without an episode of pain that cannot be expressed or made better by a hug from Mom, without the terror of a child slipping out of the house or school unnoticed, without scrubbing carpets or walls artfully decorated with things that should never be there.
Sometimes, when it’s quiet, we bravely look toward the future and wonder what it may hold for our families. Will my baby find her way back to me? Will she ever call me “Mommy”? Will she be able to live on her own, go to college, get married? Will she have someone to love her and care for her when I’m gone? And then we quickly go back to focusing on those short term goals that aren’t quite so overwhelming to face.
This Thanksgiving, I have much to be grateful for. My daughter is making slow, but steady progress. Her two siblings are healthy, happy and very cool kids. My family is close by and incredibly supportive. My husband is still by my side, despite spending way too much time at the bottom of my priority list as we try to heal our daughter. Sometimes we sit and wonder what the hell happened to the wonderful life we had planned as we walked down the aisle eleven years ago. But we’re together, stronger because of all that we have faced, devoted to our family and to each other, and for that I am most grateful.
I wish that autism never came into our lives. I’d give anything to turn back the clock and make different choices, knowing what I know now. But when life hands you lemons, you have to make lemonade, right? So I recognize that autism has also brought good things into my life. It’s brought friends that I wish I’d never met, but can’t imagine living without. It’s brought a sense of community that bonds us all with compassion and empathy. When you’re falling, you know that there are friends close by who will hold you up, friends that know what you wish for and how your heart hurts without you ever having to say a word, friends that you can truly lean on.
Last week, NAA hosted our annual conference in Fort Lauderdale. This event is never just a conference for us, it feels much more like a family reunion. There are always special moments that happen there, but this year, many of us witnessed a moment that will stay with us forever.
Our conference sponsor, Care Clinics, donated a full year of treatment - up to $50,000 worth of care - for a family without health insurance coverage. This treatment package went into our Saturday night auction at the last minute, knowing that it would go to a family at much less than its value. After all, who comes to a conference with thousands of dollars to spend? But this extremely kind gesture wasn’t at all about raising money, it was about changing lives.
There was a beautiful mom there who had come all the way from Canada to learn everything she could for her son. She’s a single mom, whose husband tragically passed away, leaving her to face the world – and autism – alone. Like many of us, she is desperately struggling with finances. She made her bid, all that she could afford, and sat anxiously at the edge of her seat. A higher bid was placed. She nervously went one bid higher and heard the words “Going, going, gone!” Her reaction to winning this treatment package for her son was something that I will never forget. She burst into tears with unimaginable joy, holding on to everyone around her, feeling in her heart that her son had a real chance for recovery, one that she couldn’t have provided him on her own.
The final bid was $1,000, an amazing deal. But there were others in the room who knew of this Mom’s struggles and knew that even this relatively small amount of money would be difficult for her to pay. Christian McIlwain, husband of my dear friend Lori, came up to me and said, “This is a lot of money for this mom, we need to help her pay for this”. As Christian placed several $20 bills in my hand, he suggested that I ask our friends to kick in some cash to help. Brilliant! Everyone that I approached gave something, staff, friends, doctors, even parents who are struggling to pay their own bills wanted to give. It was beautiful. And in less than 5 minutes, I had $1,000 in my hand to give to this Mom! With tears in her eyes and a lump in her throat, she thanked the crowd of people surrounding her - most of whom she had never met. She had been given the gift of hope for her child. And all of us who shared that moment with her had been given a gift as well.
Each year at our conference dinner party we ask everyone to form a circle, arms around each other, as we play the song, “Lean On Me”. As the song plays, we sing out loud and sway together side to side. There are tears, smiles, and messages of gratitude to each other exchanged with just a look, no words necessary. It’s a powerful reminder that we are not alone on this road.
So this Thanksgiving, I’m giving thanks for all of you! Thank you for helping a mother’s dream come true, for restoring hope to those whose hope is fading, for helping each other to find humor in our crazy lives, for providing a ray of sunshine in our darkest days, for allowing others to lean on you even when your own strength is diminished. I’m incredibly grateful to be part of this community. While it’s one that none of us would choose to join, we are truly blessed to be a part of it. You all make some great lemonade!
Happy Thanksgiving!
Wendy Fournier is President of the National Autism Association.
Wendy,
The conference truly was wonderful, and the woman you speak of whom we dubbed "canada" is close friend of mine. You truly opened a door for her and her son and I cant thank NAA or CARE Clinics enough for giving her this amazing opportunity to help heal her beautiful son. She has worked so hard and selflessly to heal him and she truly is a mother warrior beyond compare. I am blessed for knowing her, just as I am blessed for all the other amazing people I have met as I navigate my sons recovery.
Thank you! For all that you do!
- Heather
Posted by: Heather | December 01, 2008 at 11:51 AM
Wendy,
Thank you for sharing this story. May we all continue to be blessed with people in our lives who are willing to help an individual any way they can.
Posted by: Kub Marshman | November 30, 2008 at 05:42 PM
Wow...beautiful. "Thank you" to you, Wendy, and all of the other fine people at the National Autism Association for starting the variety of programs that NAA has to help children and families - both on the journey, in general, and on the road to recovery; this is just part of how it is apparent that the focus and heart of NAA is putting kids and families first.
Teri
Posted by: Teri | November 30, 2008 at 03:03 PM
Wendy,
That was a beautiful. I couldn't read your story without crying. It's these simple human pieces of hope that makes me feel like I can trudge through the struggles.
Thank you for all that you do!
Cathy Jameson
Posted by: Cathy Jameson | November 30, 2008 at 12:51 PM
OMGoodness! I've just called and shared this with my mom. Maybe a bad idea to have read this at work, since I am now surrounded by a desk of wet tissue LOL.
This is an amazing story. "Lean on Me"...perfect.
For such a beaten a battered community....the autism community...boy, how the love and support knows no boundaries!
Posted by: kat23 | November 30, 2008 at 08:27 AM
Wendy,
This NAA Conference was amazing, not for just the wonderful information presented but the pure generosity of people giving all that they can to someone who needs it most. The wonderful gift that all of you provided to this woman who I had the pleasure of rooming with during the conference made me cry for joy as it occurred...and still does to this day. But I witnessed so many other gifts of giving at the conference from the speakers spending time answering questions to the audience to parents who are walking their children down the road to recovery and eagerly brings on another family on the same path by sharing support and information. So many parents attending NAA's conference develop the network of friends from long distances...the same ones you mentioned that you can not live without.
So THANK YOU NAA for organizing this event and making everyone who attended feel at home. Thank you to all the sponsors for their gift of giving of food and information so that families with so little can attend this conference. We are truely blessed to have all of you. I am grateful for all that you do.
Jennifer Morgan-Byrd
mother of 2 children on the road to recovery
Posted by: Jennifer Morgan-Byrd | November 30, 2008 at 05:14 AM
Thank you so much Wendy. You have me crying too. There is one truly good thing that has come out of this nightmare for me and that is the willing support and friendship that I have found via the moms and dads in our community.
I cannot even articulate how much my ASD community friends have helped me. Help seems to be the overwhelming desire of every parent to an affected child - whether giving or receiving. We all want the same thing, help and hope for our children.
Thank you for this really really good news.
It gave me much more of a Thanksgiving than I had with my less than supportive family. This was so very much better.
Posted by: Lisa Sigismondi | November 30, 2008 at 01:57 AM
Wendy,
What a beautiful and inspirational post.
While I was thankful that our family Thanksgiving went so well because Isaac was in a great mood and did nothing to disrupt the nicely set tables that my father and mother had spent all day getting together for the family...you reminded me...once again, that we are not the only ones dealing with this situation. Don't get me wrong though, because, no one would have cared if he DID disrupt things!
The love of family and friends, and people who TRUELY understand, are what make everyday a Thanksgiving day.
This post made me cry and rejoice all at the same time.
God Bless You
Posted by: Isaac's Grandma | November 30, 2008 at 01:38 AM
What a heart-warming story, Wendy. How fortunate we are to have people like you and many others who uplift and support the autism community. And what a great club to belong to...not one we asked to be a part of, or necessarily wanted to participate in, but one that we can be grateful to find support and friendship that knows no bounds. Thanks for being such a passionate, dedicated leader in the club, Wendy.
Posted by: Leeann Whiffen | November 29, 2008 at 11:48 PM
Thank you for being here, Age of Autism. I am so happy that you exist. If I didn't have this place to rant some days, I don't know what I would do. I have just started antivirals with my sweet little girl and a week later I am already seeing some more WOW improvements. No speech or anything yet, but her hyperactivity has decreased GREATLY; her grandma even noticed it over Thanksgiving.
Thank you for giving me the courage to try biomedical again and stick with it. For the first time in the three years since my daughter was diagnosed I have hope, with a capital "H". Thank you for being here.
Posted by: Chris | November 29, 2008 at 10:30 PM
Wendy Fournier and everyone at NAA showcases the pure love and unconditional support for our children so evident in the biomedical autism world. We don't rely solely on docs to drug our kids to death to mask symptoms. We don't assume "in pain and acting out" is our kids' default state. We don't look to ABA and ABA alone to fix every issue our child has. We don't assume that yet another pricey neuropsych report will browbeat the schools into doing right by our kids or that sitting at an IEP meeting is the full extent of our responsibility. Of course, we use the professionals in medicine, therapy and schools to our best advantage - but WE are ALWAYS the primary caregiver for our kids. That to me is the heart of NAA and of being a Warrior Mom or Dad or Grandparent. Parents taking charge for the good of and their love for their child. Any other option to me, is anathema.
Wendy, I love you guys. You know that.
KIM
Posted by: Stagmom | November 29, 2008 at 05:29 PM
I am thankful for the box of tissues next to my keyboard.
Posted by: karenatlanta | November 29, 2008 at 05:14 PM
HEy editors!
Wendy's story got me thinking.
Can we have an area where we can paste photos of our child's "wall art"?
I think it would be amusing.
Posted by: Keith | November 29, 2008 at 05:08 PM
Wendy,
Wonderful story of 'hopeism' from the conference. Sorry that I missed that part of the meeting.
Thank-you
Posted by: AutismDad | November 29, 2008 at 04:26 PM
What a beautiful and succinct testimony of our unfailing love for our children and our community.
Indeed. A powerful anecdote for those who would second-guess and doubt the true motivation of our hearts.
Best to you and your family Wendy.
Kelli
PS...Whatever tee-shirt tagline is chosen I think a "coffee, kleenex, and replacement mascara not included" line should be on there somewhere -- especially after a story like this one ;-)
Posted by: Kelli Ann Davis | November 29, 2008 at 02:19 PM
Wendy,
I'm speechless; choked up by tears. Thank you for sharing so eloquently, this story of hope and kinship.
Lin
Posted by: Lin | November 29, 2008 at 02:12 PM
What a sweet, wonderful story. Giving someone a helpful hand feels good, but receiving it can be a real lifesaver.
Great line, Wendy: "It’s brought friends that I wish I’d never met, but can’t imagine living without."
Autism makes some strange bedfellows -- doctors, actors, football players, rockers, writers, legislators, scientists, educators and stay-at-home moms... a huge cross-section of society. Most are empathizing, sharing, learning, and pushing for treatments and justice for our children.
I hope that more parents stop passively waiting for "the science," and realize that if they want something, they have to work for it.
Posted by: nhokkanen | November 29, 2008 at 01:56 PM
Reaching out to this mom from Canada was not only an incredible act of kindness, but it's also a reminder that this issue (and this community) has no borders.
Imagine this mom's child one day doing great things for humanity because somewhere along the way his life was changed (saved) by a rowdy band of "hysterical misinformed scientifically illiterate parasites". Go figure....
Thanks for stepping up - you guys rock.
Posted by: Randy | November 29, 2008 at 01:18 PM
Lovely, Wendy. Thank-you.
(No surprise that the McIlwains would start the lemonade).
Maurine
Posted by: Maurine Meleck | November 29, 2008 at 11:53 AM
This is the most amazing story I have ever read on AOA. Thank you for sharing it.
Posted by: Diane | November 29, 2008 at 10:51 AM
Wendy,
Absolutely beautiful. Autism is everything you described and the people we encounter along the journey are heroes and angels.
The amount of hope and caring from our very supportive community is the core of what keeps us thriving.
Posted by: Teresa | November 29, 2008 at 10:39 AM
That is a beautiful Thanksgiving story. Thank you so much for sharing it.
Posted by: Kristin | November 29, 2008 at 09:34 AM
Thank you Wendy for a message that replaces tears of longing and loss with tears of joy for a young mother and her child.
Posted by: sdtech | November 29, 2008 at 08:27 AM
Hi Wendy,
Your piece reminds me of the saying that what's important is not what happens to you, but how you respond (not react) to it. Autism must be one of the hardest things that can happen, but the caring and commitment of so many parents is an awesome proof of this maxim. Coming up with that $1,000 is a priceless moment.
Best to you and all families dealing with autism,
Dan
Posted by: dan olmsted | November 29, 2008 at 08:02 AM
Typing through the tears. Thank you Wendy you are a true hero to our community. I took a slightly different path this morning as I contemplated leftovers. I like your path better. Anyone who reads your post and is not touched by it... is not human. Please send to to Dr. Julie and Offit.
Autism, leftovers and warmed up Turkey... Collateral Damage, Legacy, and the Old Guard
http://www.causecast.org/member/tanners-dad/blog_posts/436
Posted by: Tanners Dad | November 29, 2008 at 06:42 AM