a list of thank you’s

*

They’ve been hanging over my head for over a week. The thank you notes that desperately need to be written. But these are not just any thank you notes. These are the kind that demand time and effort and at least a certain amount of art. Because their recipients deserve no less.

Our friends and family

I STILL have not figured out how to properly thank them all for helping us to raise a whopping post-match $30,000 last Sunday for autism research, treatment and family services in my girl’s name.

Our friend ‘Lurch’

The one who took our last-minute challenge (that we would dye Luau’s hair Autism Awareness Blue if I could raise an additional $1,800 by the next morning) and shredded it with an eye-poppingly generous donation.

My hair stylist

No, not just for my fabulous hair (though let’s be honest, my last haircut was pretty dang thank you note worthy), but because she offered to dye Luau’s locks Autism Awareness Blue (If I say it enough times, you think someone would could coin it as a color?) in her hoity-toity Newbury Street salon.

Mike Strautmanis

The Presidential advisor who not only included me on his conference call last week just moments before joining the President as he signed into law the Combatting Autism Reauthorization Act (CARA), but who then QUOTED DIARY in the post about the event that he wrote for the WHITE HOUSE BLOG.

Yes, seriously.

I know, right? HUGE (and grammatically correct) thank you note on that one.

*

And so it was that I had planned to write at least one of these each morning this week, beginning today.

But then something happened.

Something BIG.

Something that has taken months to come to fruition.

Something that, thanks to the efforts and generosity of a diverse group of people who came together in a spirit of compassion, changed a family’s life yesterday.

Something that brought me to my knees in gratitude, in awe, in prayer.

I got this on my phone ~

*

A while back I had the tremendous pleasure of speaking with Tim Welsh, better known to most of the autism community as @TannersDad. Tim is renowned for his deft use of social media, his dedication to raising awareness, bringing the autism community together and getting real help for families in need. My conversation with Tim lit a spark.

We’d been talking about advocacy in its broadest sense – what it meant and how best to secure allies for our cause. Together, we bemoaned the vastness of that cause – the fact that autism is just so overwhelming that many people (or organizations) who might have helped us balk because they don’t know where to start. “It can be tough,’ he said, “for folks to see the impact of their donations. And it’s hard to keep them coming back when they have to have faith that results are happening.”

But it was what he said next that changed my thought process forever.

“That’s why micro-advocacy works. Find one thing that can be done and do it. Find one family that needs help and help them. There are so many who need so much; sometimes all you can do is tackle them one at a time.”

I got off the phone knowing exactly where to start.

Many of you know my dear friend Jeneil who writes about her faith, her family and her beautiful daughters, Rhema and Hope at Autism in a Word. And you also know that Jeneil’s husband, Brandon is a Major in the US Army. If you’ve been around here a while, then you also know that I would give my left arm for these people.

They needed help.

Their beautiful Rhema is preverbal. She doesn’t have words. What she does have is strength, coordination and an insatiable curiosity topped off with a complete lack of any kind of sense of danger. In short, she’s like an adorable little Houdini mixed with Evel Knievel stirred into a whole lot of Curious George.

Despite every possible safety measure, Rhema disappeared from her Mama’s arms time and again. Each time, God delivered her back to where she belonged miraculously unscathed. Jeneil and Brandon lived with the paralyzing fear that the next time would be very, very different.

“While all incidents up to this point have ended in Rhema’s safe return, [we] are obviously gravely concerned for her ongoing safety. First, Rhema does not respond to her name being called. Second, she is incapable of offering any identification should someone find her. Third, she would be helpless to defend herself and would freely go off with anyone intent on abducting her.

Additionally, as it is for so many parents of children with autism, drowning is a very real fear. Rhema loves water, but does not understand its inherent dangers. She cannot swim well enough to stay afloat for long in a pool or at all in the tides of the ocean/open water. If she went missing near water, there would be a very limited time to find her.”

Tim’s words echoed inside my head. “Find one thing that can be done and do it. Find one family that needs help and help them. One at a time.”

I called my friend, Drew.

I think it’s time to tell you a little more about Drew. Actually, I’ve already told you quite a bit, you just don’t know it because I didn’t use his real name. You know him as Cole. But it’s time to out him methinks. I first introduced him on Diary back in February of this year ~

Last summer, I got a message via Facebook from an old college friend. I hadn’t spoken to him since he graduated nearly *gasp* twenty years ago. (For those of you doing the math, I was eight at the time.)

Hi, Jess. I was searching the Internet for information about autism and I came to what I think is your blog. I saw the picture and knew immediately that it was you because you haven’t changed the slightest bit from college. Seriously, you look EXACTLY the same. I don’t know how you do it. You must still get carded all the time when you buy beer. (OK, he didn’t actually say any of that last part, but it was implied, people.) I’d love to chat if you have some time.

As happy as I was to hear from him after all these years, my heart sank. Unfortunately, I get an awful lot of ‘I was searching the Internet for information on autism and I came upon your blog.’ Parents who are wandering in the dark and scary place after diagnosis, friends who suspect that something in their child’s development is amiss, people desperately seeking connection to someone who’s been there.

I wrote back and we set up a time to talk.

As soon as we’d caught up, I told him that I assumed that he was coming to me because he had concerns about one of his children. He quickly assured me that he did not. At that point, I was simply confused.

He explained that he works as the State Director for a (very) senior United States Senator*. That fancy title, he told me, means that he serves as the Senator’s Chief of Staff for in-state affairs. As such, he takes calls from people within our state who need assistance. “When your back is against the wall and you need help, you call your Senator,” he said. “It’s my office that you call.” I pictured US citizens wrongly imprisoned in other countries calling home and begging someone to call their Senator for help. Made perfect sense. But that wasn’t what he was getting at.

He went on to tell me that he has become increasingly aware of the autism epidemic over the past couple of years. “It’s hard to miss,” he said. Indeed. He told me that it’s struck him both from a public perspective and a very personal one, as a close friend’s child was diagnosed not long ago and he watched the family begin to navigate the rocky road toward getting him the help that he needed.

He said, “The thing is, Jess, as much as I know that there are thousands upon thousands of families in our state trying desperately to cope with challenges of autism, I don’t hear from them.”

I laughed. Sort of maniacally. Definitely too loudly for anyone’s comfort. He asked what was funny.

“Oh, darlin,” I said, trying to catch my breath. (I turn into a Southern diner waitress sometimes; don’t ask.) “I just can’t say that I’d ever think to call my Senator. I mean, there’s a reason you don’t hear from us. We don’t have the TIME to call you!”

I tried to compose myself. I explained that there are political advocacy groups out there for whom we do our best to raise awareness and funds and then who we trust to call our Senators for us. I told him about Autism Votes and their tireless work on legislation like the Combating Autism Reauthorization Act , the ABLE Accounts Act and their state by state efforts to enact Autism Insurance Reform.

That wasn’t what he meant.

“I get that,” he said, “but well, I guess my mission has become to understand what it is that families need EVERY DAY. I want to know how my office can help in the EVERY DAY challenges of raising a child with autism. I know that we CAN. I just need some help figuring out HOW.”

*That ‘very senior United States Senator’ is Senator John Kerry.

Drew and I met to hammer out a strategy. I gathered feedback to start the conversation, and we agreed that we would begin to work in earnest by bringing small groups of constituents to meet with him. Three or four at a time, we’d talk over an appetizer at a local watering hole, long after his workday should have ended.

I began to plot out the groups – parents, adults on the spectrum, insurance advocates, housing advocates, military families, leaders of grass-roots service organizations, doctors, adult service providers. The list was long, but I knew who had to be in the first group.

Drew had to hear Jeneil’s story. He had to see her face. He had to understand that our military families desperately need our help in so many ways. And he had to understand that while we went to work on the big, huge, complicated, overarching policy stuff, there was something that we could do to help at least one family right now.

“Find one thing that can be done and do it. Find one family that needs help and help them. One at a time.”

He didn’t need a hard sell. From the looks of things, he didn’t need to be sold at all. He got it. He started taking notes – jotting down the connections that needed to be made, the people who would be involved, the support they’d have from his office.

We left dinner that night with a plan.

To be continued ..

*

 

 

34 thoughts on “a list of thank you’s

  1. There are very few people in the world that end up making a difference for all of us, but you Jess, are one of those at the top of the list. I don’t wish autism on any family or child but if ever there was a perfect advocate for all of them, it is you. It is your great writing skills and your tireless wonderful heart and your extraordinary mind that will help thousands of very scared parents and families everyday. Your heart-felt brilliant writing brings many to your cause.
    I am awed by my “little” girl and marvel at you everyday. Keep doing what you do as it inspires us all.

    A very greatful daddy. Loves you……

  2. Although I have a wonderfully educated guess as to what actions could possibly have been taken and how they would play out for this family, I’m still on pins and needles, my heart in my chest. I’m all choked up and am left wordless. A heavy and happy heart resides in the chest of this Mama. One at a time.

  3. You know how much I dislike the “to be continued” posts…..I peeked at the Christmas presents from the time I was old enough to know until, well…..y’all (I speak southern waitress too) are killin me! Okay, I’ll wait….

  4. FINALLY! I just knew (and I mean KNEW) that you and Drew were cooking something up. We know how you are unstoppable but everything you shared about “Cole” a few months ago made me believe that he was pretty special too and that you two re-connecting was going to serve a MUCH larger purpose than two old friends catching up. So this “to be continued” today pales nothing to the “. . .” that I have been hanging on for months waiting for the revelation that, apparently, is to come. So bring it on, baby . . . I am so ready for it and if the plan requires help from others you can already count me in!

  5. Hi Jess, some ideas for Rhema’s eloping… I have friends who have used Project Lifesaver through our county sheriff’s office. Maybe there is something like that where she and Janeil live. It’s a tracking bracelet, and it works in or near water. It was a no-go with Justin, but apparently it’s saved several kids/adults in our area.

    Since Justin doesn’t “do bling”, I wanted an alternative. I found http://www.idpup.com/ as an option, which is labels sown into clothing. i have not used this product, but have heard people like it. I also found “tattoos” which seemed much more practical for us (and more fun) through http://www.mabel.ca/. The child just has to sit still for a minute to apply it, and it has our phone # on it. It comes off in 4 or 5 days. Just used one, put it on his neck where he can’t see it, and it worked great!

    One family at a time!

  6. To Drew (my hero) and to Senator Kerry as well as everyone else who helped my beautiful friend J and her incredible daughter, Rhema THANK YOU. The autism community is growing daily and every single day another family is slammed by autism. It’s a daily struggle mentally, physically, emotionally, financially, socially, and psychologically. People like YOU who reach out to us are literally life savers. It makes my heart sing to know there are actually people in government who not only care about our families but are also standing behind us and willing to help. Thank you seems so small, but it’s real and it’s heartfelt. Thank you.

  7. You’ve given me such hope with this post, Jess. (And Drew.) All too often we feel that our children have been forgotten, will be forgotten … and to hear that someone with the power to truly make a difference has listened and acted … well, that becomes something special indeed.

    I believe that people are put on our paths for certain reasons. There is a reason why Drew and you wound up attending the same college. No randomness there.

    Thank you for this, Jess. Thank you, Drew, for your efforts on behalf of families with autism like mine and countless more throughout our country. Thank you … a million times, thank you.

  8. If we work on one family at a time from the ground up, as you are….and address the epidemic from the top down,as Drew and our legislative champions are…when we meet in the middle we will have taken care of all the business we need to. Collectively. Whether we intended to or not. It’s a beautiful model and it works. I’ve seen it. You are doing it. Let’s get it done my friend. Xo

  9. One family at a time, indeed, but the love and help that you and Drew gave here to Rhema shows the whole community what we can do when we help our friends. Now families who had no hope before have a place to turn (and a starting point for getting help). A perfect example of what happens when a village comes together.

  10. Hi Jess! It’s Mike Strautmanis. Thanks for the thank you! That’s huge. Right up there with the hairdresser too!

    Watching the President sign the Combating Autism Act was, frankly, overwhelming and I still haven’t really processed that day. I’ve been mostly consumed with the size of it all – the number of people with autism and their families that we have had a chance to help – and the number of those that are still in so much need. I really appreciate this blog and I really appreciate you as a leader. Your words really that day really spoke to me and I hope I did my part to get more people to check out your blog. It is just awesome. My wife is like you and the rest of you amazing moms out there – doing simply EVERYTHING. I don’t know how you all do it. I am so amazed by her every day. Thanks to Drew also and I’ll be sure to reach out to Senator Kerry’s staff, and ask how I can help.

    I’ll make sure to talk to the First Lady’s team and those who are working on Joining Forces, her effort with Dr. Jill Biden to give a helping hand to our military families. I’m sure there’s more we can do for those who are serving and dealing with autism.

    P.S. I also had a little something to do with the Disney thing. Although we haven’t been in a while, we love Disney too! For a while, it was the one place we could bring our son and he could be with the rest of the family, in public, having fun. And with the Guest Assistance Card, his brother and sister were following his lead for once! Try the Cruise – I think your family will love it.

    • Mr. Strautmanis,
      Thank you for your leadership to improve the lives of individuals with autism, including our military families. As a Marine Corps wife and mother of a son with autism, the emotional and financial challenges autism brings are very personal to me.

      Recently, Reps. Larson (CT) and Jones (NC) introduced legislation HR 2288 Caring for Military Kids with Autism Act to clarify coverage of ABA therapy and other evidenced based behavioral health treatments as a medically necessary service for the treatment of autism. As you may be aware, there are 28 states that mandate coverage of ABA therapy as medically necessary care for Americans across the country, yet TRICARE our military healthcare system does not leaving many to go without recommended care and others (like retirees) to go completely without. Families ask for the President’s help.

      Your help to bring coverage of autism care and supports for military families impacted by autism to the forefront is greatly appreciated.

      Please check out http://www.acttodayformilitaryfamilies.org to learn more and hear more military stories.

      Semper Fi,
      Karen – Marine wife, mother of 3 (one with autism)

  11. It is sometimes VERY hard to know where to begin with the thank-you’s… but Jess – bravo.

    As an army wife and proud autism warrior mama, I cannot find words that are big enough to truly encompass the gratitude my husband and I experience when we hear of such good deeds. Especially when they affect a fellow military family – OUR family.

    Thank you to ALL above who came together to help one of the most amazing families – military or otherwise. Your efforts mean the world to our community. It truly makes all the difference.

    ***

    Mr. Mike Strautmanis,

    You are a godsend. Please know that there are many military families waiting for that lifeline of HOPE. Waiting for the country and government they risk their lives for to hear that we are not forgotten. Let’s begin to piece together the puzzle that continues to make it so difficult for tens of thousands of our military families to serve. Because we CHOOSE to serve. No matter the challenges our children face – we CHOOSE to serve. But we need to be able to access appropriate care on par with civilians, and we both know that isn’t happening. Yet.

    1 in 88 military children with autism need action.

    1 in 88 need you.

    Thank you for your service to our country, Mike. You are in our family’s daily prayer.

    -Mrs. Rachel E. Kenyon
    Wife to Command Sergeant Major William W. Kenyon
    1st Battalion, 102 INF (MTN)
    Connecticut National Guard

    (and a mother to two beautiful and amazing Warrior Kids – one with autism)

  12. I have a lump in my throat and tears in my eyes…..Words seem to be escaping me…Thank you from the bottom of my heart, Thank you Jess for your eloquent words, Thank you to all mentioned above, thank you Mr. Mike Strautmanis!

    I can’t say any better what my friend Rachel stated above, so I will simply say this….My son is on the spectrum, and is 1 in 88, and I also have 2 precious girls who know all too well the battles of a sibling on the spectrum, and Daddy in the Military.

    Again, THANK YOU!

  13. Great blog post, Jess! Can’t wait to read your next installment. Thank you always for sharing your wonderful writing talents and being such a powerful voice for the autism community. Reading today’s blog and the comments that followed reminds me about the generosity that exists among the families who live with autism every day. This past weekend I attended two Autism Speaks walks (Salt Lake City on Sat where it was 42 degrees and Sacramento on Sun where it was 78 degrees!). There’s nothing more humbling than looking in the eyes of other parents and realizing that we are all walking in the same shoes. No words are necessary. Sometimes you nod. Other times you smile and curve her eyes to show “I get it”. There are always lots of hugs…even with complete strangers. That’s because we share a common bond. Raising a child with autism. And we will always go out of our way to help the other families…because when we first entered the world of autism, there were families who helped us. Pay it forward, right? And how wonderful it is that you are using your friends and connections who don’t live in the world of autism every day to also do their part. So huge props to your friend Drew (and his boss) for helping to make a difference. Even if it’s just one family at the beginning. Who knows how it will catch on from there? Looking forward to returning tomorrow for the next installment. xoxo

  14. Thank you Mike Strautmanis, Drew, and Senator Kerry. We should all need to help one family at a time but with your assistance we have the potential to help many.

    And also I would like to thank the hairdresser and I really hope there will be pictures. Great job fundraising!!

  15. I don’t have eloquent words right now….because to hear how one family has been helped touches me so deeply I’m not sure I can express myself clearly enough. But the one thing that resonates for me over and over is that we’re a community, we’re a team, and we celebrate each others victories, and hold each other up in our sorrows. I’m honored to be a part of this team, no matter what brought me here.

    I am THRILLED beyond words for Rhema’s family. I’ve read their blog and thought of them constantly, and so many others that I have “met” through Jess.

    So thank you….thank you SO MUCH to Drew, and Senator Kerry. I’m so glad we have a friends in the fight now in big shoes. Mr. Strautmanis, that goes for you too.

    While on the subject of thank you notes, I’d like to say thank you to Jess. This place is a warm hug and acceptance when a parent is terrified. It’s a place to come in the middle of the night when you are awake and scared, and it’s a place to come to celebrate the tiny milestones (I got to hear about my son’s day today! HUGE that he could share that with me!) and know that others are cheering too. Jess, you have literally been a lifesaver with your words. Literally. I am so incredibly grateful to you, and for this community you have built.

  16. From the White House to our own US senator’s office, it is so encouraging to feel and see that the Rhema’s of the world are more than just some story on a blog. One step at a time, one situation at a time, they are climbing the hill with us. Truly amazing… Can’t wait to read Part 2!!

  17. Jess, I read Jeneil’s post today too. You are moving mountains….just moving mountains. One rock at a time you are moving those mounds. Day by day another person reads your blog and puts on their work gloves and joins the many others who are bending down to get those rocks. When one rock is too heavy then two, three, or four gather around that boulder to move it. Yes, Jess you are moving mountains and I thank you!!!!!!

  18. Thanks for all you do Jess- You unite us all. My son is much like Rhema and I have friends who struggle with the military insurance. I have met the most wonderful moms, dads and kiddos in this club of ours. Thank you to Mike Strautmanis- so grateful to have friends in high places.

  19. Dear Mr. Strautmanis,
    I am an educator, a blogger, and a mom. I taught many students over the years how to write a letter to their senator and to the president; I hope that I taught them to persuade, to inform, to think critically, to advocate. In recent years, sometimes it’s all I can do to get through each day with my sanity in tact, and that’s because I no longer teach classes of 30, but struggle to raise two kids of my own, both of whom are beautiful, brilliant, and talented, but one of whom has autism. When I forget or simply fail to persuade, inform, think critically and advocate, because I’m just putting one foot in front of another, I know at least that Jess is doing it, unflaggingly, and I am so very thankful that you hear her. Thank you for being part of Jess’ team, for exemplifying what we need, for speaking up for your family and ours, for trying to make a difference, for recognizing the importance of autism outreach and learning in our country. Thank you for grasping the urgent need. Thank you for coming to this sacred place in our community – Diary. Thank you for getting how much a trip to Disneyland can mean. Thanks for writing, for the power of your words and your concern, for sharing your own story. Thank you for advising the president, for making sure he will “get it” that autism has a role in the country’s education, economics, military, and consciousness, and that we cannot and must not simply avert our eyes to this crisis. Thank you for what you have done and what you will do for military families as well as non-military families raising a child with autism. I can’t wait to read Jess’ next post. We need some good news.

  20. Thank you Jess for raising awareness amongst so many with your passionate eloquence, and unbridled enthusiasm. Your writing has captivated so many and provided a unique window on what it’s like to live with autism.

  21. Thank you simply doesn’t seem like enough to express how much this means to our community. Drew, Senator Kerry, Mr. Strautmanis, Jess – your actions, your compassion, your tireless advocacy, your willingness to hear us – for all of that and more we thank you. One family at a time. Celebrating the baby steps on the larger scale just like we cherish the baby steps that happen in our homes when living with autism. Thank you, from the bottom of my heart.

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