I’ve putting this post off for a while…because it isn’t a very fun post and it’s uncomfortable territory (for me and for some of my friends reading it). Nothing in the following post is meant as a judgment, clinical opinion or anything more than just one mother’s thoughts on what can be a very polarizing subject.
For nearly two decades, I was married to a man who is labeled/categorized by the State of NC and other entities as disabled…because he only has one eye (A Christmas Story isn’t just made-up…I promise). We have actually argued about this in the past because I have never thought of him as disabled. Technically, he does have limited peripheral vision, it doesn’t impact his ability to do or enjoy most everyday things. So, while he may be labeled somewhere as having a disability, that isn’t what defines him in my eyes, so I never even consider that. Ever.
Many years ago, before we had children, their dad volunteered through numerous organizations working with Special Population kids and adults. (Special Population was the term used back then. Please don’t call me out for using the wrong term today.) We went bowling with blind adults (who could totally kick your butt…no bumpers) and we went on outings with kids and adults with a broad range of challenges, both mental and physical. This was something always very dear to hime. He found great joy in those outings. Spending time with a group who is often overlooked in the daily interactions we take for granted.
I can remember him asking me once if I minded going. I never minded going. Ever. In fact, I was in awe of the easiness in which he was able to carry on with everyone. He never missed a beat. Never said the wrong thing. Always knew just what to say, what to do, when to say it and so on. I, on the other hand, always felt awkward. I was always worried about saying or doing the wrong thing. I often feel that way in groups of people I don’t know, regardless of the group. These situations only highlighted that more because most of the kids and adults were so welcoming and accepting of everyone. They immediately became friends with every new person to the group.
I remember when we started trying to grow our family and I told him that I prayed for a healthy child without disabilities. (Don’t judge y’all…this is pure honesty.) I knew that sounded horrible. What person would even think that? And to say it out loud? Was I crazy or just that awful? He asked me why…because I really don’t think that ever crossed his mind…and I told him, “Because I’d have no idea what to do, where to begin or how to make people accept my child for being different. I just don’t think I’m strong enough to deal with all of that.”
We never really talked much about that again. We didn’t think we needed to. Abby was born, healthy, happy and ahead in nearly every milestone through preschool. In fact, she was often referred to as bright, intelligent and advanced.
Remember that whole “I’m not strong enough” thing? Apparently, God disagreed. Over the past 2 years, Abby has been diagnosed with number of things. While the details of each diagnosis isn’t important, the persistence on our part is. The time and energy that goes into forcing medical providers and educators to realize something really is wrong. The significance of being straight-forward with everyone from the beginning. The mental exhaustion of dealing with the bad days. The physical exhaustion of constant meetings, appointments, phone calls, emails…all to constantly repeat yourself until someone will listen. The prayers for guidance, discernment, patience, healing, a miracle…literally anything to improve the situation. The pain of watching your child suffer and not being able to identify the problem or fix it for her.
The federal government labels my child as part of the Special Population (there’s that label again) for educational purposes. Except, she doesn’t look special in person or on paper. For months, I refused to acknowledge that label. I felt like it diminished her in some way. And then I had a moment of clarity. I was always afraid of what it would mean to have a child with a disability because I had no idea how I’d be able to deal with it. I just figured I wasn’t strong enough to handle that sort of thing. (I mean, look at my friends who do amazing things for and with their children with all sorts of struggles and challenges. They are amazing. I am not.) Accepting the labels being imposed on Abby doesn’t diminish her unless I let them. I will always be her biggest advocate. What makes her special just makes the advocacy more crucial.
Just this week, I was blown away by words of praise from two of her teachers. You see, our child, who has spent the better portion of 4th and 5th grade dealing with educators who don’t fully appreciate Abby’s specialness because she is bright and she does get good grades. So her challenges are often masked on the outside. But, these two teachers (I’ll call them Shana and Mandy…because they remind me of two dear teacher friends who tirelessly helped us navigate all of this in Wake County before we moved to Erie) actually reached out to Abby’s dad during one of her basketball games to commend her. She has a classmate that has his own challenges. Abby makes it a point to reach out to him daily, helping to break down information, review concepts…you get the idea. Both teachers were very impressed with Abby’s willingness to do this without anyone asking. And, they consider her a blessing for her classmate.
For any parent who has a “feeling” or “sense” that something might be different or unusual for their child, don’t dismiss that. And, if you continue to have those “feelings” and “senses” after reaching out to medical providers and educators, follow your gut…and DOCUMENT EVERYTHING. Even the little things that seem insignificant in the moment. Abby began displaying little signs of things as young as two and three. But everything seemed random because we weren’t fully documenting things because no one told us we needed to. Hindsight is 20/20.