I cared for two sons with developmental disabilities. This is what it’s like.

Daniel (Allison’s Son), Michael, and Allison smile for a photo at the Ohio State Fair

When I Grow Up I Want to Be…

A doctor, lawyer, ballerina…what did you want to be? I wanted to be a psychologist, however, life had something different in store for me. Life decided that I was going to be a mom, but not just a regular mom, I was going to be a mom to boys with special needs, my son’s, Joey and Michael.

I was 19 when Joey and his sister came to live with me. He had a special formula, a special cup, and special “instructions”. At the time, I never thought I would ever be comfortable with him. Joey was born with Hydrocephalus, or water on the brain, and the pressure caused by the extra fluid resulted in brain damage which would later result in a seizure disorder.

At the time I didn’t know what any of that meant, but I soon learned. I took him to doctor’s appointments and asked questions, lots of questions that sounded redundant or seemed common-sense. His neurologist, neurosurgeon, physical medicine doctor, pediatrician and county case worker thankfully answered my questions very willingly. I would spend days or weeks in the hospital with him, caring for him, watching his progress, and waiting for him to get back to normal so that we could go home. Caring for Joey taught me many things, but the most important was to smile. He was always smiling despite pain, discomfort, or illness. If he could smile, then so could I.

Little did I know, my life as a caregiver was just beginning. 5 years after Joey came into my life, I had my second child, Michael. When Michael was 6 months old his grandmother started noticing he wasn’t reaching milestones. I thought to myself, “there’s no way that there could be 2 children with disabilities in the same house, I can’t handle all of that.” At 13 months, Michael was officially diagnosed with a developmental delay and a seizure disorder, and at 8 years old he finally received the correct diagnosis, Lennox-Gastaut Syndrome, a seizure disorder with multiple seizure types, that doesn’t respond to medication.

Caring for Joey and Michael didn’t mean other aspects of my life stopped. I still had 3 other children to care for. Between baseball games, cheer leading and more, we were always on-the-go. I’ve learned a lot in the last 20 years I’ve been a caregiver and mother, like that custom wheelchairs are heavy and awkward, and that even if I just wanted to stay home I couldn’t because the kids loved all their activities. Even though there were days I wanted to give up, I never did. I was reminded why I became a caregiver when Joey would smile at me and ask for a hug, and all my problems would seemingly melt away.

In November 2012, Joey gained his wings. It was hard, but Joey’s smile and strength have inspired me to keep going. Today Michael is 14 and thriving. In the past 2 years, he’s gained many skills and been on new adventures. His seizures are more controlled than ever and he is working on feeding himself and is even using a communication device.

If you were to ask me today, “what do you want to be when you grow up?” my answer would be “exactly who I am.” At home, I’m a mother and a caregiver, and at work, I’m an advocate for people with disabilities and their families at Seniorlink. I’m also strong, brave and confident. I wouldn’t be any of these things without caring for Joey or Michael.

Joey

Michael