A few months ago, I saw a video being shared of a boy kicking his mother in the mall because she did not do what he wanted. Last week, I saw a similar video. However, this one appeared to have been filmed in a hospital waiting room. And, just like when I saw the first video, my heart broke. Millions of shares and tens of thousands of comments condemning the stoic faced mothers. Numerous people detailing all the ways they could have raised this child better. In both cases, especially the latter, as a mother of a special needs child I could tell those families were in crisis, but the rest of the world looked on like it was cheap entertainment.
Let’s for brevity’s sake focus on the second incident. And no I won’t post a link, that woman has been ridiculed enough. She is a young mother. A little girl is seated to her right and a young boy to her left. The boy, I’m assuming is her son, is openly defiant, yelling, hitting and jumping up from his seat. She patiently gets up and chases him every time he runs, while doing her best to hold on to her dignity even while being struck by her own child. I saw the pain and embarrassment in her face and I felt every emotion she was going through. It’s hard for me to write this without tearing up. I have been in her shoes. If you have never had a child with a disability, behavioral, and/or mental delay how could you possibly understand and even worse who are you to judge.
Have you ever looked at your child and even though you loved him at that moment you could not like him? Have you had to quit your job because you missed so much work for doctor’s appointments and therapy that it was impossible to work full time? Do you dread answering phone calls or opening letters from school because you are never prepared for what it might say? No, you say. Ok, well then you must be a trained professional if you are still out here trying to tell people everything they are doing wrong. Oh, you aren’t that either. So, the only thing left for you to be is an ill-informed busybody using someone’s unfortunate circumstance to bolster you own confidence. (I really wanted to use another term, but I’m keeping this family friendly.) And somehow after those last few statements there are those who just know they could do better. When they insist they know the answer I kindly offer to let my child spend a month with them. After that… silence.
When most people think of developmental delays and other disabilities the first thing that comes to mind are colorful lapel ribbons and 5k’s. And often it is given the appearance that a quick diagnosis and a gluten free, sugar free diet is all that is needed. Of course, I am over generalizing but these are the predominate images in the media. What you don’t see are parents crying in frustration, having to change a first grader’s diaper, or being hit by a child who just can’t figure out a better way to release his or her emotions. There is no big comfy couch to sit on while you talk to a doctor like you see on TV. In reality it’s waiting lists, insurance appeals, and program shuffling. Finally, when all else fails your last recourse is the police or the emergency room (yes that’s right in many cases you have to call the police on your own child just to get referrals for services). Which brings me back to that mom using every fiber of her body to stay strong for her child while she waits in the ER with her child so that maybe he can finally get the services he needs. That heartbreaking private moment is what more than 9 million people viewed and harshly critiqued.
Let me end this post by saying this is just a small part of the big picture. There are many normal moments and celebrated milestones in the lives of families with special needs kids. We laugh, joke, and have fun like everyone else. For the most part our lives consist on the same routines with maybe a few variations and adjustments. We have ups and downs just like everyone else. So, when someone is sitting in their glass house – passing judgment of another parent or family – I just want to remind them, in case they forgot: We can see you as easily as you can see us. The only difference is we have the decency to keep our thoughts to ourselves.