Caroline O'Kane Photography
By Gena Mann
Amy and I met five years ago at our favorite local breakfast spot, The Granola Bar in Westport, CT. We were introduced shortly after her son Theo had been diagnosed with autism...she was having a hard time sorting through everything that came with the diagnosis. I quickly became her confidante and "mentor" on all things autism as I had a lot of experience navigating this world having two boys on the autism spectrum several years older than her children. A few years after Theo's diagnosis, Amy left her career in law firm business development and marketing in search of a more flexible work-life balance so she could oversee her son's therapies. She launched two businesses she is able to run remotely - a boutique law firm marketing recruitment firm Green Light Consulting USA, and a virtual skincare business with Rodan+Fields. When we discovered we were both expecting daughters due around the same time, our friendship grew even closer. Now our girls are best friends and we can share this journey together!
This is Amy's story...
5 words that describe your “job:”
Hugger, Lullaby Singer, Juggler, Family Engine, Uplifter (for my kids & for my husband Eric!)
Your children's names and ages:
Elijah (9), Theo (8), Lucy (3)
How do your children inspire you?
My children inspire me in countless ways, too many for this article. I aspire to be as adventurous and fun-loving as Elijah; as pure and sweet as Theo; as confident and outgoing as Lucy. But above all else they inspire me to be the best version of myself, the best role model. To be present. In the moment. I want to teach them that women can do anything, be anything, achieve anything, so that my sons will respect and love strong women, and so that Lucy will become one.
What’s the one thing you wish people knew about your special needs child?
Theo is so bright and aware of so many parts of the world around him. He has cognitive gifts we’re certain will lead to unknowable productive achievements in the future. It may be his near-photographic memory or his evocative artwork. He can visualize books he's read and "see the pages" in his mind. He can recite books and facts verbatim. Those are just a few examples. But we feel he’s often trapped in his own mind and increasingly frustrated that he can't always communicate his thoughts or wishes or fears or even his needs. What that feels like, Eric and I can’t even begin to imagine. And it very often keeps us up at night. But please... let’s never talk about him as if he isn't there. He isn't hearing impaired. He does speak and read and write and spell. Even some autistic children who don’t have those abilities can still understand though… Theo’s a loving, highly affectionate, almost angelic 8 year old who desires human connection just like anyone else. He doesn't naturally have the skills to connect with people off the bat, but he is tightly connected to each of us on the family and a few other very special people in his life who’ve gotten to know him. When you see him, please talk to him as you would to any other child. Look into his eyes. He may respond, often with a delay as he processes. And if he doesn’t, he still hears you, and he's trying. This really matters.
“For almost any parent, the news of a special needs diagnosis is many or all of bewildering, saddening, terrifying, crushing, life-altering. But we all find ways very quickly to move past the shock and into child’s-best-interests mode”
How do you survive a tough day of parenting?
Honestly, I cry a lot. And then I try to figure out how to fix/solve/improve whatever it is that made the day so difficult. I’ve learned and accepted that there isn’t always a solution. But I try. A quiet kid-free dinner with Eric is the best way to unwind almost every day – watching the news, talking about our days. Parenting can be overwhelming for everyone, of course. But when you add a child with special needs to the mix, it’s about a thousand times more difficult and stressful. That’s the sad fact. When Theo was initially diagnosed, I was a complete mess, in denial, and I bottled everything up. And I hoped, prayed and believed that the diagnosis was wrong. My kid was perfect to me, so how could he be labeled as disabled? Reality slowly set in. I now rely on a small circle of friends who can relate, and I’ve learned that venting and sharing our messiest autism moments is cathartic. Our connections with other families in a similar situation have changed my life and my entire perspective. I am eternally grateful for these relationships.
What is an activity your whole family loves to do together?
Swim! On a sunny day we can hang out in the pool all day long, and it feels easy and relaxing. So while Theo might be climbing on an off pool floats, while Lucy wants to have a treasure hunt with her toys and Elijah wants to play catch, we are together in one place and everyone is happy. Theo is calmest and most verbal in the pool too. There’s nothing better for him. In the winter we frequently visit a local indoor pool and last month had a very successful family trip to an indoor water park, which honestly – to our surprise- was amazing. Pure joy.
What is the one thing in your play space your child cannot live without?
Theo is a sensory-seeking kid and craves physical activity and movement, so the best place for him is at a playground – climbing, sliding, swinging – or better yet, at a trampoline park or pool. When we are indoors for long periods of time, we do our best with a mini-trampoline, different types of seated scooters, ball pit, large exercise balls for bouncing, or by swinging him around. He loves bear hugs, tickles and piggyback rides too. I dream of building a huge OT-style room for him with tall slides, monkey bars, swings, rock climbing wall, and more. Maybe even an indoor pool. One day…
What’s the one thing you would drive back to get if you forgot it when you went out with your kids?
Snacks! Theo has the sweetest, happiest, most gentle demeanor…. but not when he’s hangry!
Theo's favorite toy?
When Theo was 4 I asked him what he wanted for his birthday and at the time he had very little language. He responded without missing a beat “an orange tiger” which was thrilling on so many levels- he communicated his desire; he answered a question unprompted; and he used new words. I remember calling my sister Jen with tears in my eyes, because at that point each utterance was a huge deal. Two days later a package arrived with the largest orange stuffed tiger she could find. He sleeps with his arms wrapped around Tiger every night, so thank goodness he’s held up in the wash! Tiger travels with us on all overnight trips too…
Theo's favorite app?
YouTube – Theo loves to watch videos of his favorite books being read aloud while he watches the pages turned in the video, and often he reads along with his own book at the same time. He also enjoys videos of people making play-doh creations, as well as kids music videos.
Clothing item Theo tries to put on every day and you have to sneak into the laundry?
Theo isn’t attached to any particular item of clothing, though he is happiest in soft clothing - t-shirts, sweatshirts, sweatpants, and shorts – no buttons or zippers!
What is the last thing you purchased for yourself that made you really happy?
A deep tissue massage.
What advice would you give to a new special needs mom?
For almost any parent, the news of a special needs diagnosis is many or all of bewildering, saddening, terrifying, crushing, life-altering. But we all find ways very quickly to move past the shock and into child’s-best-interests mode, even through all of the stages we go through ourselves: denial/anger/bargaining/depression/acceptance. You’ll learn that a concrete diagnosis means that you’ll get much more support now on many levels – educationally, medically, governmentally etc. You can also gain so much from support groups or informal connections with parents dealing with extremely similar challenges. Remember that your child is the same person now as he/she was before the diagnosis, but with your diagnosis comes awareness and the ability to help them develop and manage their disability with informed and appropriate therapeutic and educational strategies. Play to their strengths, focus on what makes them happy, nurture them, relish them, love them and accept them.
What quote to you live by?
People will forget what you said, people will forget what you did, but people will never forget how you made them feel. – Maya Angelou
