I see and talk with them every day.
“They” are the families and friends of people with developmental disabilities. I am part of this often unseen segment of our local population. We understand what it’s like to be different. Our lives look different from most others. We have an instant understanding and respect for each other and know that our lives are different, often filled with wheelchairs, therapies, doctor appointments, behaviorists and more. We love our sons and daughters, and will be the first to tell you what a blessing and privilege it is to have them in our lives.
But the reality of our situations is unavoidable. We do need the help from a caring community. These are real situations for real families in McHenry County.
There’s Mrs. E, who is in her early 70s. Her husband died last fall and she now cares for their son, who is 48 years old and has Down syndrome. He misses his dad and keeps asking when he is coming back. Mrs. E is concerned that he does not understand and thinks that dad is going to reappear in his favorite chair. They have no family in the area, and she worries about what will happen to her son when she dies or becomes unable to care for him.
There is Mary, whose son is going to graduate from special education this fall. Mary is a single mom, and her son, Joey, has autism. He needs to be in a structured program. His school experience has been wonderful, and the school staff is able to effectively deal with his behaviors and poor ability to deal with social situations. Mary does not know how she is going to be able to maintain her job and keep Joey at home. Joey has no opportunity for a day program in McHenry County that can meet his needs.
There’s Anna, who uses a wheelchair for mobility. Anna has typical intelligence, but her care needs are significant. Her mom is over 50 years old and experiencing chronic back issues from caring for Anna. Anna doesn’t “fit” into any current group-home situation because of her care needs. She cries when she talks about how worried she is for her mom.
Every night when I put my daughter to bed, she signs to me that she will live with mom for all years – right? I reply, of course, and my heart breaks a little each time. I am most certainly not going to live forever. I have built my life around her as most parents of special needs children do. My daughter is now 30 years old. Our life together is all she has ever known. What will happen to her if she outlives me?
This is National Developmental Disabilities Awareness Month. There are 5,276 children and adults in McHenry County with developmental disabilities. Only 935 people with developmental disabilities are receiving services. We have an opportunity April 9 to change that by passing the referendum to establish a 377/Developmental Disabilities Board in our county.
Through this board, we can provide the services and support that our adults and children with developmental disabilities so desperately need. We can do this responsibly and keep them in their own community close to friends and families.
McHenry County is a community that cares.
• Cindy Sullivan is the executive director of Options & Advocacy.