Alan and Annette are the sweetest people in the world. You can see the passion in their heart to make families feel included and happy. Everything they do is full of love, dedication and a huge amount of work. We want to invite you to meet the founders of Blue Skies Over Autism.
CATXA: How can you describe your Special needs caregiver Journey? How did you feel when you received the diagnosis of your son? Did you have support from family and friends?
Annette and I always tell people that we have had two lives. We had a life before the autism diagnosis and one after. Life after the diagnosis came with a lot of additional unique challenges. We quickly discovered that if we tried to live the same life before the diagnosis, we would have been miserable. What we found out is when we adapted to the life that came with how autism affected Kevin daily, life got better for us. We discovered things Kevin liked to do and learned to like doing them, too.
When Kevin received a diagnosis of severe non-verbal autism, we were floored. We were sad, afraid, and alone. I have no doubt that our family, friends, and co-workers didn't try their best to support us. I don't think they knew how to. We knew they loved us and wanted to help, but they had their own lives. Autism can be a sad story that people leave at our doorstep when they return to their own homes. We have learned to appreciate those who can help and understand why others cannot.
CATXA: What inspired you to use your special needs knowledge to help the community?
Alan: From a personal standpoint, Annette and I needed a place where our son and the two of us felt like we belonged. It was hard to attend an event when we knew Kevin's behavior could overshadow it. That contributed to feeling isolated from church, sporting events, and family events. One of us would go, and the other would stay home with Kevin. We, as a family, needed to heal and adapt. That required being around people who understood our family dynamics, and Kevin's behavior wasn't distracting to them.
There is a tremendous need for groups like yours, ours, and many others. The complexity of planning for a safe and sensory-tolerant environment often limits the size of an event. That's why it takes many families like yours and ours to lead on behalf of the autism community and sponsor these events. Families living with autism crave normalcy. If all these groups can create spaces where these families feel normal, we will make a difference. No stares, no judgment, just acceptance and love.
Annette and I felt we had the responsibility, experience, heart, capacity, desire, and drive to give back to the autism community. We relied on other groups. It was time to do our part too. We have been running BSoA for 11 years now. We feel like we have helped re-engage autism families with society by assisting them in venturing out in public as a large cohesive group. There are often so many of us that the public has to notice our presence. People began to appreciate and welcome us. It always feels like one big family when we all do meet up. We have watched each other's kids grow up, celebrated their respective accomplishments, and supported each other when times were tough. We gave ourselves and the other families an extended family who better understand the autistic life people to lean on.
CATXA: What projects are you working on right now?
Alan: We are preparing for the annual BSoA Autism Awareness Parade in Galveston in mid-April. Families rent or bring golf carts, and some decorate them with an autism theme. We will have a parade in The Strand area and then proceed to a BSoA-sponsored lunch at a restaurant. Afterward, we all drive to a local attraction as a group, where BSoA sponsors the entry fee.
This has been a well-received event in the past. Lots of smiles, waves, and words of encouragement toward our families from locals and tourists in Galveston. In the past, we have visited the following attractions, the Bishops Palace, the Railroad Museum, the Bryan Museum, and an easter egg hunt in a local park.
CATX: How do you want to impact your community? Tell us about your organization.
Alan: Annette and I founded a 501c3 called Blue Skyes over Autism. Our primary mission is to spread awareness and empower the families who come to BSoA events to feel a sense of pride and ownership in doing so. Rising above your own challenges and giving back to others in the autism community here and abroad has been uplifting and inspiring to those we ultimately serve. In the past, Annette and I have had the privilege to witness BSoA families individually stand in front of their peers to give gifts, hugs, and smiles to autistic families in Mexico, the Bahamas, Belize, Honduras, and Jamaica. In the fight against autism, we call that going from victim to victor. Realizing at one point that those families may have felt helpless and hopeless too after their child's diagnosis yet now find themselves in a position to foster hope for others less fortunate. That is something those families will likely cherish for eternity.
Financial implications resulting from Covid have limited our ability to continue to go abroad, so moving forward, we will focus primarily on local events. We will focus on shining the light on these wonderful families living with autism as well as the supporters that God has put in our path. We will always plan events in the best interests of the families participating in them. Regular has no boundaries at BSoA.
CATX: As caregivers of children with special needs, we learn from them every day. What is something you have learned from Kevin?
Our advice…..Learn to appreciate those who can care and not dwell on those who do not. People who stare are annihilating their own dignity, not your child's. Seek out a group near you or start your own group. Not every group may be for you, and that's ok. You aren't alone. There are many of us wearing similar shoes. Those shoes come in many styles, sizes, and colors, but you can walk down a path with others with different shoes. We can all inspire, learn from, and educate each other. Tell the collective autism story to others. Let our kids shine while you live that second life to its fullest. Seek out resource information; don't wait for information to find you. Work as a team in your household. When you have a bad day, have a short memory. When you have a good day, store it in your heart. Be the best advocate possible for your child. God bless all of you!
CATX: How can other special needs caregivers connect with you? (You can add your e-mail, social media handles, etc).
Website www.blueskyesoverautism.com
Facebook Blue Skyes over Autism
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