Ryan’s diagnosis brought even more questions. My dad and husband were in denial. They were just wondering when he would walk, not if he could. The courts decided to delay Ryan’s adoption. Social services wanted us to give him back, telling us we didn’t ask for a child with disabilities and that we would get another child.
But Ryan was our son from the moment we met him. There was never a question in our minds or hearts. We were going forward!
However, I needed some guidance!
Prior to the Internet, information about children with disabilities was hard to find. The public library was the main source for most information. I needed answers but didn’t know where to find them. Thankfully, someone told me about a support group for moms of kids with disabilities. I hoped they would help answer my questions.
I got up the nerve to attend my first support meeting when Ryan was 9 months old. This group was made up of parents whose kids had different disabilities, different ages, and different levels of involvement. Even with all the differences, we shared common ground.
This group of moms (and one dad) would become my teachers, mentors, and friends. They helped me learn to navigate the early childhood program (in those days a school that Ryan started attending at 8 months of age). They helped me prepare for Ryan’s first Admissions, Review, and Dismissal (ARD) meeting when he started his public education.
They lent an ear when I needed to talk and volunteered babysitting just to give me a break. While I had other friends in the community, these parents were the friends that knew what I was experiencing and provided the support I needed to be a better mom for Ryan.
They shared the hopes and dreams as well as the fears they had for each of their children. They freely discussed the difficulties of balancing siblings and marriages and their own needs.
They also shared names of great doctors, new therapies, and special programs in the community.
Without the parent group, I might have eventually found the supports and services Ryan needed. I might even have discovered how to be an advocate for him. But the life lessons learned from those wonderful parents would stay with us throughout our amazing journey, and I would share those lessons with other parents down the road.
Find out how to connect with other parents and the invaluable information parents can share with each other.
We have all found ourselves, at one point or another, comparing our child or our situation to another. The grass is always greener and you want what you can’t have—all phrases we have heard. Sometimes we must remind ourselves that we are all doing the best we can and we need to support one another and focus on the similarities, not the differences.
With every passing year in the world of being a parent of a child with special health care needs, you have the day to day struggles, the fun holidays, and some surprises. Good and bad.