So, to piggyback onto my previous blog post, here is the speech that I presented today:
When Kelly asked me to share my experience raising a child with a developmental disability, I pondered how I could possibly share a lifetime of learning in a seven to ten minute span. It has been a twenty year world wind of endless victories and suffocating defeats.
Addison Bailey Jones, or Bailey as he is widely known was born April 7, 1995. He would be our first child. The excitement peaked as he entered the world at eight pounds four ounces. However, the light, welcoming ambiance soon grew to concern over numerous medical issues and a possible diagnosis of Down syndrome. While we waited for confirmation of his diagnosis, I knew. My gut and heart were in sync – I knew that this beautiful boy would have a different future than the one I had once imagined. The fear of the future led me to one question….what will happen to him when we are gone?
While I had no information about Down syndrome, I was compelled to read everything I could grab along with talking to anyone who had experience. I was in search of a “how to” book on how we were going to do this. There were helpful suggestions from both sides of the family along with numerous inquisitions from well-meaning individuals. Everyone had an opinion, but fortunately, we allowed the chatter to stop and pioneer our own path.
The first few years of his life were a combination of medical obstacles paired with raising him as typical as possible. I never wanted his diagnosis to define him. He was enrolled in a day care that welcomed children with challenges and paired them with typical kids. For this very reason, he accomplished milestones sooner than he would have if I had kept him at home with me. Once he started kindergarten, I realized that the education system had more special needs than my son. Each Individual Education Planning meeting with his teachers and school representatives, left me more frustrated as I felt that my son was not getting the very foundation of what every child deserves. I was the human bulldozer while I held everyone accountable for their part in educating my son. Every step forward we took, there was always an obstacle in our way.
Four years after we had Bailey, we welcomed our youngest, Bryce. It is a typical relationship of brothers who constantly enjoy the chance to annoy each other, all the while silently being the others biggest supporter. Bryce’s level of compassion is well above boys his age. At 16, he is accepting of those who others may find different which will serve him well when he is out on his own. We have never assumed or asked him to be responsible for Bailey when we are gone. For Bryce, we want him to have the freedom to live his own life, but in my heart, I know that Bryce will always be the one who steps up to the plate in regards to his brother’s needs.
For activities, I wanted him to have the experience of playing sports with typical kids. Upward basketball allotted him the opportunity. You see, the innocence of a child doesn’t discern that another child is different, their hearts are more open, genuine, and accepting. He flourished and we experienced another one of God’s many blessings while he participated.
With all of the challenges, there were many victories. He was the first individual with Down syndrome to be an altar server at Holy Spirit Church and still covets the distinction, as he loves being a part of mass. For two years, he was the assistant soccer coach at Holy Spirit at the encouragement of a kind hearted man. Trinity High School allowed him to be a team manager for the freshman football team, even though they don’t allow non students to participate in extracurricular activities. Coaches and students alike were drawn to him. Each opportunity soothed the edgy fear that lingered within me. I began to realize that there is acceptance within our community.
Through all the trials and tribulations, there was a shining light all along and that was Bailey. His outlook never matched mine as he saw every possibility as limitless. Bailey’s sparkling personality paired with his magical smile has allowed him to educate those he meets. He is the teacher who sparks compassion in others. He is one of many who will continue to contribute to the community.
For me, it was our “out of the box” way of thinking that surged Bailey’s progress. I am not one to comply to other people’s limited thinking.
Now, here we are at our next milestone. In May, Bailey will complete his training at Ahrens Vocational School. His dream of having a fulfilling job was recently granted. He started working at Trinity High School in their cafeteria. He loves seeing all the staff that he knows, the students, and most of all his brother. Three days a week, he completes several tasks and he is becoming quite a cook in the process. The beautiful pairing of Trinity and Bailey is just another indicator on how far we are progressing in the integration of these individuals in our community.
Bailey is eager to live on his own. Several years ago, we put him on the waiting list at Day Spring in hopes that independent living will be his next big adventure. Until then, he will work, participate in his endless sports and social obligations, all the while living a truly blessed life. His favorite saying is, “I love my life”. If everyone had his outlook, the world would be a better place.
Parenting is beyond difficult, but when you sprinkle it with a coating of special needs, it provides endless opportunities to advocate for better services, to stumble when the road becomes rocky, and to celebrate for even the tiniest victories. We hit the jackpot with Bailey and I wouldn’t change any part of our journey.
Lastly, I would like to say that Day Spring, is working to provide choice and opportunity for people like Bailey. This would provide him with the chance to live as independently as possible in a safe caring community with the support and services needed. Because of Day Spring I believe that Bailey will achieve independent living and one day have a key to his own front door. I continue to believe in a greater community that welcomes every one of different abilities to contribute their unique gifts and experience the human right to pursue happiness.