Uncle Bob holding my son for the very first time!
"Sometimes We Only See How People Are Different. But If We Look Hard Enough, You Can See How Much We're All Alike." ~Aladdin~
I have always searched for my life's purpose. Don't we all? I thought it was to be an educator, just like my mother and grandmother were. I loved my kindergarten teaching career, then my children were born and my purpose shifted to being their mom. I would transform from an educator to my children's first teacher. Life was going just as I had planned, that was, until my son was diagnosed with autism.
"Immerse him in his strengths and interests and he will succeed!" the wise developmental pediatrician advised. Followed by, "Remove him from his third grade classroom and allow him time to heal and drive his own learning while at home with you." Having had sixteen years in the classroom, my husband and I felt it only made sense that I would take a leave of absence and stay home. Together, my son and I entered our new educational journey, anxious, afraid, but determined to heal and succeed.
Five years into our strength and interest driven, project based, virtual learning venture, I was introduced to advocacy. Advocacy was furthest from my comfort zone, yet, my son needed my voice to help him succeed in learning and life. He was my catalyst for change, while deep down, my inner child was digging her heels in, screaming for me to stop. My self critic, that inner voice that appears to be reason, but really self sabotaging, continued telling me I was going to fail as a mom, wife and teacher if I shared our life of autism. I had worked very hard to wear a smile and share how life was fine, and the thought of taking the mask off and being vulnerable was terrifying. I couldn't risk the judgement of my family or myself, while my son needed my voice to help.
Little did I realize at the time, but my path to advocacy was set in motion to not only help my children, but also my brother-in-law, Bob. Bob was the oldest in my husband, John's, family. He had intellectual disabilities and the family believed he would live with their mom until she couldn't take care of him anymore, at which point one of them would take over. A common bleak futuristic belief system most parents raising children with disabilities were told.
I needed answers and hope in helping raise and educate our son. His autism was not going to define who he was, and surely wasn't going to limit his potential. I enrolled in two advocacy training programs, one locally with other parents raising children with disabilities. The main focus, advocating for their child's education and creating an Individual Education Plan (IEP) that not only focused on our children's needs, but also strengths and interests. It was so rejuvinating to know my family wasn't alone on our island, that so many others understood. It was a safe place to speak the fears raising and educating children with disabilities was. I was hooked and wanted more so I enrolled in a second advocacy training, this time at the state level with the focus being disability law and inclusion in employment and independent living.
After spending a year hearing inspirational, Self Directed Supports (SDS), stories from self advocates, along with their families, Bob's desires to live on his own became attainable. With the siblings help, and further understanding of community supports and resources, we devised a plan to help him. Within a month of moving out, John and I became Bob's guardians. The only option, we were aware of, was to locate an apartment with another adult with disabilities, and locate contracted supports. Bob loved his independence, however, the cares were not to the level he needed. We ended up moving Bob to two other living situations, within a home and a group home, before being offered SDS. Once I was able to hire, manage, and locate supports and resources that specifically met Bob's needs, he was beyond ecstatic about his independent life.
The last five years gave Bob the happiest and fulfilling of his life, and we couldn't have been more excited for him. He brought so much joy and gratitude to all who had the good fortune to know him, especially me. He taught me to appreciate the simple pleasures in life, live in the moment, be grateful, and make time to play, laugh, and be a kid at heart. Most importantly, to see all hopes and dreams are achievable. You just have to see life through compassionate, resilient and gratitude filled eyes. After all, we are all alike; differently!