When it first started
When Gage was two he was still crawling and not walking. He’d just mastered pulling up and standing at the edge of a piece of furniture and we were thrilled for the progress he was making in physical therapy. He was thriving in speech and occupational therapy as well and I was a proud mom.
I find it unbelievable, even today, how quickly that pride went away when a friend of a friend asked how old he was and when I told her she appeared to be in shock. Disgust even, because my two year old had the physicality and behaviors of a less than 1 year old. As luck would have it, my best friend happened to be with me and she was able to talk me off the ledge. I was able to talk about the experience of judgment from others early on in my relationship with my own special needs mom self.
That one experience sent me into an internal dialogue to figure out how I wanted to deal with people who were judgmental about my children and their development, or lack their of, as the case was at the time. Little did I know that Gage’s behavior would later become oppositional, abusive, sad and defensive. I didn’t know when he was two that he’d eventually talk with others about killing himself and me, I didn’t know that he would be rude and disrespectful most of the time. I didn’t know that parents I considered friendly, even supportive, would shun Gage and our family. I didn’t know what I didn’t know, but luckily that early experience helped me deal with the judgment that did come with great force and frequency in the years past age two.
How did (do) I deal with public judgment?
I cried a lot. I cried about the pain of watching my children judged for disabilities they could not help. I cried about who judged us – close family and friends – because they should be the most understanding as they have intimate details, yet they still think we could do better. I’ve talked directly with people who’ve made comments to me or around me. I’m still not over a quite painful experience where I told a friend, “It is okay, we know a lot of people don’t like him and don’t want to be around him.”* Needless to say we no longer have a personal relationship although she did send a note some weeks later apologizing. I blog about it for therapy and I make my husband and close friends suffer through hours of analyzing the different situations. I surround myself and the kids with loving and compassionate people who are willing to accept my kids the way they are and who encourage their children to do the same. Because we go out in public, I’ve truly developed a thick skin.
A thick skin will only take you so far.
I’ve planned for years how to cope. I have conversations in my head ready to talk with someone about with many scenarios; either discussing a deficit or a behavior. I’m not afraid to discuss any situation with people no matter how unpleasant. I understand my kids are unique even in their uniqueness and that Gage especially marches to his own music and doesn’t care that others don’t hear it. Mostly, it’s one of the traits I think will help him in the future, but many people do not find it enduring, this much I know.
Do I like it dealing with it head on? No. But it’s as necessary for me as is talking about failing kidneys or meds that don’t work so I lump it all into the non-glamorous facets of special needs parenting. It’s not for sissies.
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