a list of thank you’s – part two

*

So where was I?

Ah, yes, Drew and I had just met with Jeneil, along with a few others – including one who is doing groundbreaking (sometimes literally) work in the area of adult housing, one who is a psychologist who works with ASD families and one who works as a community service liaison for adults with Asperger’s – all of them parents of children or adults on the autism spectrum.

Drew left that first meeting with pages of notes. We all left with reams of hope.

As we stood outside on the sidewalk that night gathering our thoughts and chattering excitedly, I remember wondering if it was just me. Perhaps I was naive, I thought. Perhaps I wanted to believe in him because he was an old friend.

I timidly asked the group for their thoughts. The responses tumbled out in rapid fire – “Oh, Jess, he LISTENED. He actually LISTENED,” said the mom of two young adults on the spectrum.

“I don’t want to get too excited,” said another, “but I really feel like this mattered.”

The third added, shaking her head slowly as she spoke, “I’m just so grateful.”

There was a lot to consider out of that meeting – and it was a lot more than we could accomplish quickly. Within short order, Drew had put together a comprehensive overview of his notes and sent it to the attendees for feedback. After reviewing each topic in detail and assigning a staff person to each one, Drew wrapped up his note to us with four short sentences that convinced me we were in the right hands.

Thanks for listening.

I am interested in feedback.

More to come.

ONWARD!

Drew and I got together to strategize after the meeting. Of all the priorities, I said, getting Rhema protected had to be first. I didn’t mean to haul out the soapbox, but the next thing I knew I was hoisting it up on the table and climbing on up. I know this surprises none of you, but back then poor Drew had no idea what he was in for. Nearly a year and a whole lot of meetings later, he’s come to expect it, but back then I felt a little sorry for the guy.

Once secure on my soapbox, I told him about the military problem. I told him that the disastrously low level of care for our military families with autism simply must not – can not – be allowed to stand as it is. I explained that according to the Department of Defense’s own numbers, 1 in 88 military dependents is on the autism spectrum. I told him that of those, less that 10% are getting the services they need. TEN Percent.

I gained steam as I told him that it was unconscionable to me that the families who choose to serve their country are forced to fight battles on two fronts. That retirees – including those who were gravely wounded in battle and thereby forced to MEDICALLY retire due to injuries sustained AT WAR – had absolutely no autism coverage under Tricare.

I told him that I couldn’t live with the fact that children of our nation’s heroes had LESS support than mine.

I explained that I had watched Jeneil and her family struggle along with so many other military families and that I needed to find a way to help them. That I needed HIM to help.

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

The locator for Rhema would be our first order of business.

Drew set out to find a corporate partner. His first call was to a gentleman named Todd Morris, the CEO of BrickHouse Security. As I had been with Drew, Drew was ready for the hard sell to Mr. Morris. But just like Drew, Mr. Morris didn’t need to be sold. After hearing about Rhema, he was on board. He not only donated the device, but waived the associated service fees in perpetuity. Thanks to Mr. Morris’s overwhelming generosity, the first hurdle turned out not to be a hurdle at all.

Next, Drew’s office worked with BrickHouse to coordinate with the Russell’s town police department. The PD adopted the EmFInders system, which would work seamlessly with the Lok8u GPS Locator device.

And finally, I got to send the best e-mail EVER.

Sept 19, 2011
.
From: Jess
.
To: Jeneil
.
cc: Drew O’Brien, Ashley O’Neil, Todd Morris, Captain Negrotti
.
.
Jeneil,
.
I am thrilled to introduce you to the people who have come together to help keep your beautiful Rhema safe. Ashley O’Neill, who works with Drew O’Brien in Senator Kerry’s office, Todd Morris, CEO of BrickHouse Security and Captain Negrotti of the [their town’s] PD.

Mr. Morris has incredibly generously offered to supply Rhema with an appropriate security device and to cover the cost of service fees associated with round-the-clock monitoring through EmFinders, the system used by [your town’s] Police Department.

Captain Negrotti will be registering the device as soon as you are able to connect with Mr. Morris and give him the necessary information.

For my part, I can’t thank you all enough for your time, your effort, your compassion and your generosity. To Senator Kerry, Drew and Ashley, your dedication to our community is so greatly appreciated. To Mr. Morris and Captain Negrotti, thank you both from the bottom of my heart.

I am so touched by the way you all have come together to support the most deserving family I know in their efforts to keep their precious child safe. At a time when the rhetoric in our nation so easily gets overheated and divisive talk dominates the media, I am heartened by this moment. The Russells have poured their hearts and souls into protecting our nation. I am deeply grateful for your help in returning the favor to them.

I’ll let you all take it from here.

My Best,

Jess

.
“Find one thing that can be done and do it. Find one family that needs help and help them. One at a time.”
.
Thank you Drew, for everything. There aren’t words big enough.
.
Thank you Senator Kerry for providing the support to make this happen. .
.
Thank you Ashley, for shepherding this to fruition, for understanding so deeply the reasons that it was so important – and for sharing those reasons with me – and for not laughing when I welled up on the phone.
.
Thank you to Captain Negrotti, Chief Mark Ray, Sergeant McCarthy, Officer Desmond and Officer Deroberts for prioritizing the safety of this little girl, and in so doing, paving the way to protect so many others.
.
Thank you to Chris Buehler and Jim Nalley of EmFinders for their generosity and commitment to making this happen.
.
And a huge thank you to Todd Morris of BrickHouse Security for opening your heart and giving so generously to this family. An entire community thanks you.
.
*
.
While we celebrate this victory for Rhema and revel in the generosity, compassion and exemplary cooperation that brought it forth, we do so knowing full well how much more there is to do.
.
One locator bracelet does not fix the world. It does not make autism – particularly severe autism like Rhema’s — any easier to manage day in and day out. But what it does do is make the world safer for one little girl for whose parents she IS the world.
.
Yes, there’s a lot to do. And it’s overwhelming. But it can be done.
.
I think my friend Shannon said it best in her comment on yesterday’s post:
.
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.
.
Thank you Shannon. And Amen.
.
Ed Note: Please read Jeneil’s post HERE

48 thoughts on “a list of thank you’s – part two

  1. You are amazing, Jess! I am, as you already know, in awe of your abilities. This is an amazing triumph. One small step leads to many more steps. You’re helping to move mountains. I’m so proud of you.

    Love you,
    Mom

  2. Peace and the ability to sleep a tiny bit easier are priceless gifts that have been bestowed upon this family. Many thanks to those who made this possible. The day to day stress and struggle and worry of a child with Rhema’s needs was just lightened a bit. Endless thank yous and proof of what a community can accomplish when they all work together!!

  3. amen indeed. and to go back to a previous post – you are all making a ding in the universe. Our universe. Thank you – to ALL of you – who are paving the way for helping our kids. You opened your hearts and gave a family hope. Giving the rest of us hope as well.
    As Drew said to you…more to come…ONWARD!
    And as always Jess, you are remarkable and amazing. Please keep carrying that soap box around. You just never know.

  4. Thank you all for the hard work and generosities you give everyday. As a retired military family with 2 children on the spectrum I thank you all from the bottom of my heart. Our children are often over looked, I am thankful we had the resources to move somewhere where our children receive so many resources through our school district or I don’t know what we would do for them. You all amaze me with the strength and courage you show everyday

  5. “Our obligation is to give meaning to life and in doing so to overcome the passive, indifferent life”
    Elie Wiesel
    Since you quoted my favorite author, I thought you would understand his anger with indifference. Most people I meet who I share my story with are indifferent before we sit down. They don’t have an opinion since it does not affect them. They have never dealt with the emotional turmoil that we see and live every day. Thank you for always sharing your story and forcing other to realize indifference to autism will never change anything. And one day, yes it will come, statistics are will prove this right, one day that person will be profoundly affected by autism.

  6. Huge thanks to Drew, Senator Kerry, Brickhouse, local law enforcement and you, Jess, for working to help our sweet Rhema. Action is a beautiful thing!

  7. I am thrilled that Rhema is safe, that her parents can sleep a little easier tonight and hereafter. Thank you to all that have made this possible, it’s no little thing, it’s huge.

    Even more I am so thankful that those at the top are paying attention, are starting to see our vast community, and are addressing the needs within it. Amen to the comment by Shannon! Perfectly said.

    Onward! This gives me hope in a way that I haven’t had it before.

  8. Jess, I just wanted to point out that you missed one of the references to Rhema’s town. It is in the first paragraph of the letter.

  9. To Drew, to Senator Kerry, the folks at EmFinders and BrickHouse Security, and the local law enforcement working with Rhema’s family…THANK YOU. On the surface, your actions may seem to be limited to helping one family keep their child safe, but they are the pebble making ripples in the pond.

    Please know, there are thousands of us watching and feeling just a little more hopeful today. Hopeful that people are not only paying attention but are willing to step up and do something to help. Sometimes, that hope can carry us through the day. Thank you. Thank you from the bottom of my heart.

  10. Is there a mechanism (local, state, or national) for advising police and fire departments if your child is likely to wander? At the local level we’ve given the heads-up to our own safety officers, but is there a broader registry effort? Just wondering if there is a preliminary safety net that could be cast to raise awareness, one step before all the children who need devices like Rhema’s get their own.

  11. A HUGE Thank You to every one who helped see this come to fruition! Baby steps become quantum leaps…Jess, that’s been my mantra since the day you said it to me. We are all in this together. ❤

  12. To Drew, Senator Kerry, Brickhouse, Jess, and everyone working SO hard to keep our kids from being forgotten, thank you. One family at a time, definitely.
    There are thousands, tens of thousands that need help. I am so thankful to Senator Kerry’s office for making this a priority. How can we help Senators from other states understand that our kids are valuable and countless other families all over the country need their leadership and help too? Thank you Senator Kerry for being a champion for our kids. I’m hoping and praying that other members of government will follow in your trailblazing footsteps. Bless you, Drew, and Brickhouse Security for making this one very special family sleep a little more easily at night.

  13. “A small group of thoughtful people could change the world. Indeed, it’s the only thing that ever has.” ~ Margaret Mead
    Thank you to ALL of you Thoughtful People. You have most definitely given this mom HOPE (again!).

  14. Wonderful! I am so relieved for Janeil and her family. I join the chorus singing a song of gratefullness to Jess, Drew, Ashley, Todd Morris, Captain Negrotti, Chris Buehler, Jim Nalley and EVERYONE else who made this come together for this amazing and deserving family.

    And now my mind is racing . . . how can we help the next family? How can we organize ourselves to bring about more tangible help like this to other families? What are the other needs we can address right now family by family? If we can raise $30,000 for Autism Speaks where we (or at least I) do not see where the money goes how much more money could we raise if we all saw EXACTLY how we are helping? Hmm . . .

  15. there simply are no words…..This Military wife, former Marine, and Momma to three precious angels, one who happens to be on the spectrum thanks each and every person who is stepping up to make a difference in our community…THANK YOU!! and Jess, Your words have given me hope time and again, you inspire me….THANK YOU!

  16. It is amazing to see what one little idea can grow into when people put their minds and abilities together! What a terrific story of hope!!

  17. To Rhema’s family: what a beautiful girl. Thank you for sharing your story.

    To Drew: Wow, you’re wonderful, and I know that when Joanie Caucus is your counterpart for Senator Warren (what, doesn’t everyone read Doonesbury?!) you’ll be an unbeatable team!

    Mr. Morris: If you had a corner store, I’d go patronize it right now. Your website is an education, to say the least.

    Jess: Are you sure you’re just one woman? I think you must have an army of stunt doubles. But no, I know you’re a mom with a passion, and a woman who knows that hope “is not a gift from God. It is a gift only we can give one another.” Elie Wiesel. Because it’s never not a day to quote him, and because The Elie Wiesel Foundation for Humanity seeks to combat “intolerance, indifference, and injustice” and promote “acceptance, understanding, and equality.” Amen.

    Karin

  18. Jess – not only are you a blessing in so many autism-parents’ lives just by connecting with us, you BRING blessings in the form of the right, amazing people at the right time. Well, yesterday is always a bit better to bring help, but I’m heartened to hear of this help today.

    I hope these wonderful people, including those at BrickHouse and the Senator’s office, will have the chance to put more of a dent in those shameful military autism statistics.

    Thanking all of you for what this generosity represents: understanding, compassion, and real support.

  19. Crying my eyes out, as usual, after reading your newest post. Your description of Rhema’s behavior could have been about my son. I agree it is criminal how we treat our military families with regards to autism services coverage. Today I’m crying a few tears because I KNOW that fear, as do so many families. But mostly the tears are those of overwhelming gratitude that the people that made this happen for Rhema did so! My heart is full of hope today, for all of us. Thank you Jess, and all involved in this!

  20. Thanks to all of you who made this possible. I am glad this was a first priority, keeping that beautiful little girl safe. I spoke with Brandon about it this weekend and he was very excited about it. He was already talking about uses for this device to help others.

  21. I shared this (with a big congratulations and thank you!) on Facebook.
    Your action has left a glow of love, and after-all isn’t that what we are trying to teach our children? To love one another!
    Good job, well done, and thank you again!

  22. Came over from FB to follow your “orders” and say thank you.

    Thank you! Thank you! Thank you! Thank you to all who helped in big ways and small to keep Rhema safe. I read her momma’s blog and I know what a blessing this was to them.

    I’m so thankful on her behalf and on behalf of all of us autism parents who have that very real fear of our kiddos wandering away and us not being able to find them.

    My son (who turned 3 today!!!) is a quick little guy who also has no sense of danger. But I’m lucky enough that he does have words and (so far) doesn’t mind a leash. And were working very hard in ABA to teach him to stay close to me. And as a navy wife, I know how hard that worry and stress is compounded when it’s just you because your spouse is gone and you’re far away from your friends and family (or at least until you build up a new support group).

    Anyway, thank you for doing this for Rhema and her family. I know how happy and what a relief this must be! I am so happy for them!

  23. Pingback: “Find one thing that can be done and do it. Find one family that needs help and help them. One at a time.” | Ancil Jones' Blog

  24. I have posted the following in my blog at(http://wp.me/pVJVa-7s) AncilJones.Wordpress.com:

    I just read this post and Jess, you hit the nail right on the head. The title statement is the only way to get anything done. I want to thank you Jess for taking care of our military families. As a retired Navy Chief , I greatly appreciate you help recognizing the need of our hero families.

    Keep up the fantastic work and God bless.

  25. “But what it does do is make the world safer for one little girl for whose parents she IS the world.

    Yes, there’s a lot to do. And it’s overwhelming. But it can be done.”

    All I can do is requote you, Jess, because you said it all. After you helped make the world safe for Rhema and her family, and paved a way to help other families. Thank you to everyone who was involved in making this happen, and to everyone who works tirelessly to make the world a safer and more understanding place for people with ASD and their families.

  26. So happy and full of hope. 🙂 Thank you to all involved, for making this beautiful little girl’s safety the first priority. Thank you DOAM. Thank you for all that you do.

  27. so much of this effort, all of the conversations and all this behind-the-scenes work i didn’t even know about until now. i am floored. thank you, jess. thank you, drew. and thank you to this wonderful community who celebrates with us.

  28. Can you imagine how it feels to be your parent and read all the comments written about your wonderful child and all she does to make the world better?
    You just keep paying it foreward for everyone all the time. There are no words to express the wonder of you, your gifts and your generousity.
    I could never have even designed the specialness that you are, not in my wildest dreams.
    Love you,
    dad

  29. There is a lovely pond near our house, which my dear granddaughter has never seen – precisely because she loves water so much. She has autism, and like so many other children in this community, she is profoundly drawn to water, is very mobile and has no concept of danger. It makes me sad to limit her experience of her community, but I fear that if she knew that pond existed, it would only be a matter of time before she would find a momentary lapse in our vigilance and slip away, perhaps forever. The need for affordable locator devices and services in our community is absolutely huge. Thanks to all who recognized that and are helping keep one little girl safe. Way to go, Jess, for getting this going!!

  30. Allow me to add my thanks and congratulations to all … this is incredibly inspiring in so many ways. The ripple effect from this is going to reach across the country and touch so many. Thank you to all for making this happen.

  31. No words can express the thanks we have for you who have helped this dear family. Thank you, thank you for helping this precious girl stay safe and her parents sane. gail

  32. Like Melissa please allow me to add my thanks to everyone. Let me also thank Rhema. Although this locator bracelet was given to her it is the gift that she has given to us that has also touched my heart so deeply. With no words Rhema has taught us how to come together. To join hands and, “find the one thing that can be done and do it.” Without Rhema we would not have learned how to come together and “do it”. So I thank everyone involved in this most beautiful gift and I thank Rhema because It is her spirit and the grace that fills her soul that made this gift possible.

  33. What a heart-warming story and a much-needed solution. Thank God for all the people that came together to make this happen. When my ASD-diagnosed daughter was younger, we needed a solution like this, (and still probably could use it) but didn’t know what was available or that there was anyone to help us. Words cannot describe the feeling when your child is missing. I have faith that the knowledge of the need of these measures for such families as Rhema’s and my own continues to get out there, and is heard by those who can help us. Thank you, Jess for your daily thoughts and observations that makes us realize we are not alone. Onward!

  34. Awesome, awesome, awesome!

    And it’s so funny that you mention adult housing at the beginning of this post, because that’s what my Hopeful Parents post today was all about the need for (looking down the road for my Jake).

    Keep up the good work, Jess, you’re an inspiration to us all.

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