Editor's Note: This blog originally appears on Faith Inclusion Network.
I initially “met” Shelly Christensen on the phone, when I called with some questions related to the inclusion of people with disabilities into Jewish communities. She was incredibly generous with her time and, some 40 minutes later, I felt like I had a new friend in Minnesota. Not long afterward, we got the chance to meet in person at an AAIDD conference and now we talk frequently since she is a Faith Inclusion Network National Board Adviser.
Shelly has a lot of experience as a faith and disability advocate, traveling across the country to speak and be involved in many large Jewish and interfaith initiatives. But what I appreciate personally about Shelly is her gift of encouragement. I always come away from our conversations feeling wonderful! Thank you for that beautiful gift and for all you continue to do to further the national faith and disability movement, Shelly.
KJ: How old was your child when he was diagnosed with autism?
Shelly: Until Jake started Kindergarten we thought that he was our adorable quirky kid. Whether he was telling an inebriated customer in my Dad’s bar to settle down or his grandpa would throw him out, or declaring that “Gone With the Wind” was his favorite book when he was preschool Student of the Week, it never occurred to me that his brain wiring was cause for a diagnosis. During his Kindergarten year my husband Rick and I carted our three sons to a family therapist to help us figure out how to keep up with the demands of family and work. Within the first five minutes of observing the five of us she informed us that Jacob seemed to have ADHD, to which I replied, “What did I do to cause it?” I didn’t even know what ADHD was! Overwhelmed by raising three kids, an 8 year old, a 5 year old and an infant, working a full time job, and dealing with the death of my beloved grandmother and my dad’s cancer diagnosis seemed almost too much to bear. The best advice I received from a good friend was “put one foot in front of the other and keep walking.” I did just that and eventually I found a semblance of new normal and realized that life will go on regardless of how you navigate it. I looked inward and realized that while circumstances had changed, I was still the same resilient soul I’d always been. And so we went through the twists and turns over the years until Jake was in 10th grade. I had decided during that time that Jake didn’t have ADHD, but nothing really fit his quirky personality and unique way of seeing the world.
KJ: Can you share how you felt when you received that diagnosis?
Shelly: Asperger syndrome was not a new disability but inclusion in the DSM was. When Jake’s confirmation teacher, a child psychologist, told me about Asperger syndrome and suggested we go for a diagnosis, I immediately went online and began reading about it. It was a description of how Jake navigated the world around him, and I knew in my core that he has Asperger syndrome. He was diagnosed shortly after that. I recall the feeling of relief and of peace in knowing, and realized that while a diagnosis didn’t change who Jake is, it helped all of us understand him better, and support him better.
KJ: How has living with autism affected your family?
Shelly: I don’t know if life would have been any different without autism for my family. We are all unique individuals who love each other and respect each other’s way of being in the world. I think I understand a lot more about how unique each and every person is. It has helped me to think about how we are all created in God’s Image which, in my limited understanding, means that God must have so many very very diverse qualities!
KJ: What is currently your biggest challenge as an autism mom?
Shelly: Patience as the journey continues toward living independently with a future of hope. It takes time and there is no proscribed schedule.
KJ: What is currently your greatest joy as an autism mom?
Shelly: Jake is starting a new journey as a student in an 8 week information technology course followed by an internship and hopefully full time employment. Seeing how he has matured and taken responsibility for his choices, how kind, loving, and absolutely insightful, and funny he is the gift that keeps on giving.
KJ: Has autism affected your faith? Yes. If yes, how so?
Shelly: Many times I’ve been so angry at God. “Why me? Why my child?” I railed at God, cried, yelled, cursed. And then one day I realized that maybe God was hurting as much as I was. I realized that God had nothing to do with Jake having autism. I think God may have been hurting because the world is so unfair at times to people who have disabilities. I realized in that moment that God and I were partners and then I felt nothing but gratitude for having my faith and my beliefs. Since then I have come to believe that each of us has a purpose, and if we act as God’s partners, we will discover within ourselves that purpose. I don’t know whether God gives us a purpose or not. But I do believe that if we listen to that small voice within, then someday we will hear what it says and it will guide us to that purpose and that place.
KJ: Is there anything else you would like to share about being an autism mom?
Shelly: I don’t think of myself as an autism mom. I am a mom of three remarkable men who continue to give me great joy. Each one of them continues to surprise me in their own unique ways. I do recognize that I am someone who others see as a mom of someone who has a disability who has navigated the unmapped journey and made meaning of it. I know that opening the doors for other moms to tell their stories, share their hopes, dreams and fears is more important than ever.
Karen Jackson is an advocate for people with disabilities. She attends Blessed Sacrament Catholic Church of Norfolk. She's currently the Director of Faith Inclusion Network, (FIN) of Hampton Roads.