Supporting Sean & Those with Autism

$33,960 of $35,000 goal

Raised by 321 people in 13 months
Created July 5, 2018
On Sunday, July 1st, 2018, our beautiful son and brother, Sean Franklin Salvo, unexpectedly left this world. Words cannot express our grief and deep sense of loss. As we struggle to imagine our lives without Sean, we find ourselves thinking deeply about the unique joys and challenges of living with a loved one with autism. Indeed, the spectrum for autism is quite broad. Sean’s case, like that of many others, was severe. He was nonverbal, prone to seizures, and beset by a variety of medical complications related to ASD.

Yet, what we will always remember is how awesome a kid Sean was. And that he was happy. He was also fortunate to have parents whose jobs provided health coverage that offered Sean access to loving and trained teachers and specialists, each and every day.

As a family, we have been touched over the years by the many people who have supported us, and Sean, through his daily struggles. Now, our deepest desire is for Sean’s memory to live on. How can you help? Many individuals and families in our community do not have that same level of support and/or access.

We would deeply appreciate if you would pay your love for Sean forward by assisting individuals and families impacted by autism—particularly with severe cases like his.

We will soon be connecting with local organizations to find ways our time, resources, and your donated contributions can best impact those who need the most impactful assistance.

Thank you for continuing to keep our family in your prayers. It means the world to us all.
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The truth, since we are speaking with all honesty of the most important stuff of life here, is that the Salvos worried about Sean's future. As he grew bigger and stronger, they were slowly becoming less and less able to guide him, less able to protect him from doing things he shouldn't do. And who would care for him someday when they could not? There was no clarity about how things would turn out for Sean, and this end to Sean's earthly life—while sudden and tragic and so very, very sad also contains a tiny bit of what Pat had the wisdom to name "A horrible relief."

As Christine put it and the reading they choose from Isaiah describes it, Sean is finally free of his prison, all the pain and grief and frustration Sean felt is over: He is at peace with God.

This is of course the message of our liturgy in this holy place, this is why we sing Joyful, Joyful as we exit today. There is death and loss and sorrow, but there is also resurrection and life and hope. We are an Easter people, and our faith that death is but a portal to something more glorious, more alive, more free than we can possibly imagine—this faith offers us courage in these times of loss. If death is the closing of one door, it is the opening of another one to peace that passes understanding. When we are done with this world, God's promise is that a new body awaits, where all burdens are lifted and we can flourish anew—jump and swim and radiate love—a place where sorrow and pain are no more, neither sighing, but life everlasting.

In the most profound sense, Sean knew he was beloved. Like our psalm said, even without words he was known in that way that gives life its ultimate meaning. The best example of this was a story Steve told me last night: recently he took Sean with him to Rouse's grocery. Turning a corner the two of them, at the same moment spotted a sour cream cake—Sean's favorite. Without words, the two made eye contact—something Sean did not often do. The unspoken message was clear: we're buying that cake and eating it NOW, even if the poor store clerk has to clean up behind us while we finish our shopping.

Sometimes the most profound language of love is a shared confectionary delight.

Sean's family and the army of other people who worked with him and played with him—from their awesome sitter Caroline, to Sean's particular grown-up friend Johnny Culpepper, to Anais St. John (on whom Sean clearly had a crush), to the many families who shared their journey of autism in their own family like Amanda and Phil. . .and so many, many others —ALL these people conveyed to Sean every day that he was special and wonderful and beloved just the way he was.

All of us who were lucky enough to know Sean could see and feel the love surrounding him and filling him and radiating from him; seeing that love would bring forth the love in us too. Even without words, Sean could and did communicate that love, with his hugs and his laughter and his unrestrained joy.

There is SO MUCH love in our lives that is not put into words yet is constantly all around us and in us and between us, ready to hold us in its warm if pointy-chinned embrace when we need it most. We must NEVER doubt that, no matter how bleak things feel. The Salvos have felt that love from this amazing community gathered here today and will need it in the weeks and months to come. It is giving them the strength to go on and the courage to consider what's next in their strange new life after Sean—maybe a foundation or a camp to help other families with autism? Wherever their love and energy will be focused on next, it will be empowered by their drive to carry on the legacy of their son.

That drive to love is Sean's gift to all of us. That is how Sean will live on.

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For those who had the opportunity to hear and express interest in a copy of the homily from Sean's memorial service as well as anyone else who might be interested in a small glimpse into our life with Sean, we share the following:

The Funeral of Sean Franklin Salvo
July 6, 2018
The Rev. E. G. Taylor
Trinity Episcopal Church
New Orleans, Louisiana

Isaiah 61: 1 - 3, Psalm 139: 1 - 11, John 10: 11 - 16

O Lord, you have searched me and known me.
You discern my thoughts.
You are acquainted with all my ways.
Even before a word is on my tongue,
O Lord, you know it completely.

Our psalm today is sometimes called Psalm to the Inescapable God and the Salvos picked it out as part of our service today because it conveys the secret of the wonderful life of Sean Franklin Salvo— the power of being known and loved…without words. We are gathered in love this morning around the Salvo family in this community of care to celebrate a life and to share our sorrow, and to connect over the life of this beautiful little boy that ended all too soon.

I had the great good fortune to meet the Salvos in Alexandria, Virginia, in 2007, before Sean was born. With their new and beautiful daughter Claire, living in a bustling suburb just outside Washington D.C., the Salvos didn't yet know the whirlwind that was Sean Franklin Salvo, about to arrive and turn their life in a wonderful and challenging direction.

For Sean was both of these things: wonderful and challenging. You can see all that in his smile in the photos that his friends so thoughtfully arranged to be shown here, a smile both joyously infectious, and also a little mischievous. A smile that always seemed to be saying, "I know something you don't know—it's really great—c'mon and see!

This was a young man who, even though he had just turned eight years old, was as innocent as could be, not a mean bone in his body, never hurtful, gorgeous inside and out with his curly locks and big brown eyes, and an infectious laugh his mother has a treasured recording of on her phone. Sean effortlessly accomplished what countless adults only dream of: living his life entirely in the moment, accepting everyone and everything, bringing out the best in people simply by his zest for life.

No one who was ever hugged by Sean can forget the experience—when Sean hugged he meant it. He hugged with everything he had to hug with: his hands and arms and chest and legs and even his rather sharp chin. And usually with a completely spontaneous kiss to boot. You could never doubt that he was telling you, without words, "You're awesome! Thanks for being here—isn't this great?"

He spoke with his body in other ways too: in the way he didn't simply eat his beloved Reginelli's pizza, but dived into it, grabbing and kneading the cheese in his fingers like clay and shoving it into his mouth before turning the slice upside down to consume the crust. He shouted unrestrained joy with his body when he would jump naked on his trampoline —one of his favorite things to do and actually a somewhat frequent if disconcerting "welcome to the neighborhood sign" at the entrance to the Springwood Estates in Belle Chasse, surprising the passing motorists.

Most of all Sean loved the water—splashing and jumping in a pool was his happiest place, the place where he felt most alive, the most pure joy. There is an ironic beauty that it was in the water where Sean took his leave from us.

Sean spoke with his body because he could not speak with his words. Autism is a complicated and difficult condition, challenging for Sean and for those who cared for him. His mother described autism as like a prison that Sean could not get out of, at times a source of frustration beyond imagination. But this boy worked hard every day to grow and to thrive, getting to school at 7:30 a.m. and sometimes not getting home until 6:00, making the A/B honor roll in First Grade at Belle Chasse Primary, working with occupational therapists and speech therapists and even physical therapists—the whole village of people who gave of themselves to be part of Sean's amazing journey; the whole village of people touched by this amazing child.

As Steve's mother Pat put it, unless you have loved and lived with a child like Sean, you cannot understand the emotional and physical energy required, day in and day out. I think this is the way Sean's life most touched me as I have watched Steve and Christine summon that energy and love day after day after day in a way that was simply inspiring. So much of the Salvos’ life and plans revolved around Sean's needs out of their deep and abiding love for their son, with no shred of self-pity, no twinge of regret. All parenting is hard work, but these two epitomized the message of Jesus from our Gospel today: laying down their lives like the Good Shepherd just because that is what life called on them to do.

Steve sometimes referred to this challenge as the "chip on his shoulder," tapping into his intensely competitive nature to not only rise to this challenge, but to utterly blow it away. His and Christine's acceptance of and whole-hearted commitment to their situation shines as a beacon of perseverance and strength for all of us as we each face what life may throw our way. These are heroes in our midst: models of selfless love.

The chaos of life with Sean, from times when he would butt holes in the walls with his head or gnaw on the window sill, or run around the house without a stitch of clothing laughing his head off as he was vainly chased, or climbing out of his car seat as the car sped down a highway . . . just for fun, flashing that impish grin and raining down his infectious laugh—the shenanigans of this free, chaotic spirit were, while stressful, what his parents called "some of the best stuff"—what made their Sean their Sean. This is the stuff they will profoundly miss.

And we cannot forget Claire, Sean's sister. Little brothers are challenging enough for all big sisters. But Claire's patience and grace and generous spirit toward her brother are things that everyone who knows her have always admired about her, wishing they could be more like her in their own lives.

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Wow! We are absolutely touched by the love and support that has been sent our way by so many this past week. While we continue to grieve the loss of Sean, we are able to smile knowing the positive impact he had, and will continue to have, on so many.

He has forever changed me...I am a better person for having known and loved him. Sean has taught us so much..and his loving, caring, and not-a-mean-bone-in-his-body personality will live on with his immediate family (and there are many we include in that definition), and hopefully many others.

The money we have already raised to support individuals and families impacted by autism is astounding. We have an additional $1,245 that was contributed to Trinity Episcopal School (subject line: Salvo Autism Fund) at Sean's memorial service on Friday. Christine and I plan a sizable contribution ourselves. More importantly, we plan to partner together and "do something" that makes a difference TODAY and can prove sustainable for years to come.

As a member of the Board of Directors of the Greater New Orleans chapter of the Autism Society of America, I plan to facilitate conversations with advocates, organizations, and families in the New Orleans area and beyond. We know that many families impacted by autism seek resources and programs that either don't exist, are cost prohibitive, or are not advertised well enough. We want to change that. (One example of a topic we are excited about possibly exploring: summer camp programs and/or after school programs).

Please continue to share this campaign far and wide.
Any donation amount can make a difference.

We are eternally grateful for your support. We love each of you.
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We cannot begin to thank you all enough for the thoughtfulness and love coming our way. While we are currently not able to thank you all individually, know that we appreciate each of you more than you realize. As the dust begins to settle and as we get our thoughts and emotions in order, we'll continue to keep you updated about our efforts, through your contributions, toward keeping Sean's memory alive.
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$33,960 of $35,000 goal

Raised by 321 people in 13 months
Created July 5, 2018
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