Tammy Burns was sitting at a stoplight one afternoon several years ago on a busy main thoroughfare in Midlothian, when a woman behind her hopped out of her minivan and ran up to knock on Tammy’s window. She had seen Tammy’s bumper sticker, the one that said, “I love someone with Autism.” Racing against the impending green light, the woman hurriedly told Tammy that her son had autism as well, and handed Tammy her number.
Such is the level of desperation and loneliness that face families of children with special needs that it compels them to reach out to anyone they can find, in any situation. To find someone who can empathize, another mom who’s perhaps survived the black hole of despair that follows a diagnosis like autism. Though she didn’t realize it at the time, this chance meeting sparked the beginning of a new chapter in Tammy and her family’s own journey with their son Jared.
Tammy’s suspicions about her son were first confirmed at a doctor’s visit when he was little more than a year old: he made little to no eye contact, and often became lost in his own world, fixated on certain objects. She remembers being sent away from the appointment feeling lost. There were no next steps, no suggestions- nothing. She, like so many other parents who receive the blow of that diagnosis, are simply sent back out the door- but this time to a world that’s unfamiliar. Their child has been diagnosed with autism and everything they had planned, dreamed, and hoped for them has forever been set on a different trajectory. Destination? Unknown. Map? Doesn’t exist. The despair is suffocating. The panic that results from the need to be and do everything possible for their child to succeed is overwhelming. And Tammy knows it all too well.
And yet, it was hard for me to picture that side of her as we sat in their house that evening several weeks ago. For the entire time I’ve known Tammy- which is going on almost a decade now- I’ve seen her exude so many traits: boundless optimism, energy, hope, passion. She was affectionately dubbed a “little stick of dynamite” and it was an accurate depiction- just put her somewhere and watch the ideas explode. Those who know her have, through the years, gotten a steady glimpse of someone who was able to take her despair and, instead of wallowing, turn it into a platform. This is a woman who transformed her rock bottom into a springboard to create and run a vibrant program for families of those with special needs, to become seen as a beacon of hope in her community for those walking similar paths. And yet, it takes a certain level of vulnerability to be that person- a decision that she has to make on a regular basis. She understands that you can’t lead anyone where you’ve never been. But she also knows that the black hole surrounding these kinds of diagnoses is a little less dark and scary when there are others there to hold onto.
The night we had picked to get together just happened to be Jared’s 15th birthday. It couldn’t have been more fitting. We sang “happy birthday” and though I’ve sung it at least a hundred or so other times in my life, that time felt different to me. I watched his eyes light up as the candles were blown out, the delight on his face as he opened up a new Super Mario Brothers game. Once again, I found myself trying to balance the intrusion of a clunky camera and the real, raw, moments happening around a kitchen table. I watched Tammy stroke Jared’s head, how he burrowed his face into her side as we sang happy birthday to him. And it dawned on me that we were celebrating more than just Jared that night- it was also a celebration of his mama. A wife, sister, tireless advocate, fierce protector. A warrior. Because the reality is that when our children are born, so are we. We don’t come into the world knowing exactly how to be mothers and fathers. We are always changing, evolving, learning to sacrifice yet again after we thought we’d sacrificed it all. We are continually burrowing our roots deeper into the ground, continually being recreated and reshaped from yesterday’s mistakes and tomorrow’s hopes. It was Jared’s birthday that day, but fifteen years ago, on August 28th, 1998, an incredible mother was also born.
And then, often without warning, life will sometimes require us to change the kind of mother we thought we were going to be. So I asked her, point-blank, a question that even as I spoke it, seemed like an inane question to ask: “Would you make it different if you could?” And what she said surprised me.
“If someone came up with a cure– if tomorrow, there was this pill that would take his autism away– I would do it for him. But I wouldn’t change the way he’s impacted our family- the way it’s shaped each of us. I love his autism. Jared is happy, with his legos and his video games. His life is good. If we could see things through his eyes, it’s so different. It’s a gift. He’s a good reminder to me- and to us as a family- to slow down.”
It’s a gift that once came disguised as a heavy diagnosis– the ability to understand, perhaps with more clarity than some, what it means to “become like a child.” And though learning to embrace this kind of innocence has often come at a great expense for their family- being judged, misunderstood, and even left out– they’ll tell you that seeing life through his eyes is worth it all. With Tammy’s help, he’s impacted tons of families in the area. Each year in May, a 5K is held to raise Autism awareness and support. I had the privilege of shooting the race two years ago and I was blown away by the sheer number of people who showed up to run with Jared’s team. It was like Christmas- that race day possibly being even more exciting to him than his own birthday.
On any given day, you can find Jared playing with his legos or Super Mario. (In fact, his room is completely decked out with little goombas and Mario posters). He only likes to wear white T shirts and gym shorts. He goes to bed every night without fail at 9 pm. He wears hats when he sleeps and uses the same blanket every night. And he’s up every morning like clockwork at 7. He started this fall as a freshman at Cosby High School and is the varsity football team’s manager and water boy.
And Tammy? She continues to love and let go, and worry, like every other mom. She wonders whether he’s fitting in, whether he’s being looked after while she’s not with him, and also whether she’s balancing her time and attention well enough between all three of her children. And yet, she doesn’t let the worry consume her. Instead, she continues to juggle schedules, attend and speak at Autism conferences and various meetings around the Richmond area, and be her children’s biggest cheerleader. She is constantly making herself available to help families who are struggling with their own children’s disabilities. When her own nephew was diagnosed with some developmental delays, Tammy was, of course, right there with words of encouragement for her sister. Her sister, Myra, wrote:
“When we were told Wyatt had a 'developmental delay,' we were given an anecdote to try and help us cope with what we had just been told. The story explained that as parents we have plans for our children and when a disability shows up that we are not expecting, it doesn’t have to change your life in a bad way. The analogy they used was a vacation. You pick to go to Aruba, you pack just the right clothes, sunscreen, even currency to travel to this beautiful destination. But when you step off the plane you find that instead of Aruba, you’ve landed in Iceland. You’re not prepared, you’re worried–scared, even. But soon you see the beauty in the new destination and wind up loving it more than where you had planned to go. This did help us for that moment. I tell you this to say, yes it is a beautiful destination but without a guide or translator you feel lost. You don’t know where is safe for shelter, support, or even how to read signs. Tammy is the world’s best tour guide! She is fluent in I.E.P., EDCD waivers, inclusion, OT, PT, Speech, and education language, and she knows all the great supports and fun activities for families. She is the reason “Iceland” isn’t so scary because she has lived this, learned, taught and shared with others her experiences. I pray that there was someone there for her like she has been for me and countless others who do not know where to go to enjoy the beauty in the special gifts we have been given in our children!”
And the words of gratitude continue, extending beyond her own family. Bradford Hulcher took the time to write to me and tell me what Tammy has meant to him and those in the community:
“I first met Tammy when she contacted the Autism Society when Jared was first diagnosed with autism. Through her journey with Jared, Tammy has shared the knowledge and resources she has learned with others on a similar path. Her volunteerism with the Autism Society from leadership positions to daily office management – no job too large or small – has been a true gift to the hundreds of families and individuals who count on the ASCV for assistance. Tammy is a blessing to the disability community and all whose lives she touches. Her generosity is boundless; she has lifted many families from despair to hope. I believe God uses Tammy as a beacon of optimism and love for those touched by “differences.”
Another friend had this to say about her:
“Tammy Burns is simply an amazing woman. A wonderful wife, mother, pastor and friend. She is so incredibly knowledgeable in so many areas of the disability world, and is always willing/able to spend the time sharing this knowledge with others. She is compassionate, kind, smart, with a wicked laugh. She is able to help others see the “funny” in times that it is hard to see it. I am proud to know her and prouder to call her a friend.” (Beth Trebour)
These are just a small fraction of the people who have been impacted either directly or indirectly by Tammy and Jared. And I have no doubt that those numbers will continue to grow as the months and years go by. Because life, with all of its valleys and mountaintops and curveballs and difficulties, is better when it’s lived in community. Because, when it comes to parenthood- and especially parenthood involving special needs- it truly does take a village. It may not be the village that you first imagined, but it’s still beautiful.
Thank you, Tammy, for building and growing that precious village.