Sharing your story has the power to educate, raise awareness, and spread compassion.
You can probably remember as a child, being in a group of children and hearing someone loudly exclaiming, “So and so has cooties!” Insert whoever’s name. Maybe it was your name. Perhaps, rather, you were the one making the announcement. Either way, as we grew up we eventually understood that “cooties” aren’t a real thing and you can’t catch them from anyone. If you took that thought process to a deeper level, you’d also understand that assigning someone to having “cooties” was unfair and hurtful.
Even if we change the scenario some, we can still see the same results. Like in calling someone a “retard.” That’s unfair and hurtful. I’d go so far as to call it hate speech. The best weapon I have in my arsenal to combat this type of social ignorance is education. By “ignorance” I mean the dictionary definition of it: not knowing or not fully understanding.
I grew up having an uncle with a cognitive developmental delay. I count that as a blessing, as I have a deeper understanding and more compassion for those who struggle cognitively than perhaps does someone who’s never had that kind of up-close personal experience. That prepared me somewhat for having a son with autism. He’s four years old and has made great strides in the couple of years that he’s been receiving services, but he’s delayed nonetheless in comparison with his “typically developing” peers. I know that as he gets older, he’s more likely to be the target of someone’s social ignorance.
But I have the opportunity while he’s still young to bring out my best weapon and use it as often as necessary. On a somewhat regular basis, I educate others about disabilities in general. Since I’m a nurse, I’ve learned quite a bit about the wide variety of physical, cognitive and emotional/social issues that pose a very real disadvantage for some people.
More specifically, in my current position as a school nurse, I deal daily with issues such as muscular dystrophy, diabetes, anxiety, attention-deficit disorder, and other diagnoses that cause students to struggle in one way or another. They already have enough to deal with, so adding in aggravating factors as name-calling or bullying causes unnecessary stress. I’ve stepped in more than once when I’ve witnessed (or was informed about) another student harassing one of “my kids.” I take action by doing two things: letting the bully know in no uncertain terms that I won’t stand for that kind of behavior for any reason and, that he/she should have some compassion and why.
This goes for just about anyone in any circumstance. But here I’ll focus mainly on educating those closest to your special needs child. If you don’t have a special needs child, then perhaps you care for or spend a lot of time with someone who struggles with a different issue that has a major or negative impact on their life (depression, eating disorder, prosthetic limb, speech impediment, etc.). The principles can be translated into several different circumstances.
Those who will spend time with your special needs child can be educated in your presence about his/her needs by your example. You know your child’s needs best, and can pick up on subtle cues and nonverbal body language. Another person may not be able to do that, so explain what your observation was for the action you performed.
For example, when my son used to drop a toy, he’d get upset and have a mini-meltdown. But I noticed there was usually a second or two delay in between the toy dropping and his emotional response. I learned to jump into the situation immediately after he had dropped the toy and say, “Malachi, it’s okay. The toy fell but all you have to do is pick it up.” Shortly after this intervention, he stopped getting upset. When people spend time with your child, they’ll learn his/her cues and be able to appropriately respond.
Another way to help others learn about your child’s needs is to educate in general about the issue at hand. I do a lot of autism awareness education. I do it for my son, but I do it also because I can see the world at large is finally “getting it” and even becoming more accepting and accommodating to those with autism. But it never would have happened if parents and other advocates didn’t get out there and start sharing information. You can do that with any diagnosis. There are probably support and advocacy groups you can tap into for ideas and resources; even rare disorders are becoming less unknown because somebody wanted to be an educational spokesperson.
If you don’t feel it’s your calling to go out in public to share, then you can still do so in your circles of influence – extended family, close friends, co-workers, your child’s teachers and caregivers, etc. You are your child’s best advocate in educating others about his/her specific needs and needs in general. You may want to have something prepared ahead of time to share with strangers, however, if there’s a chance you may be confronted in public. Let me explain.
When I take my four-year-old out in public to a department store or restaurant and he begins to have a meltdown for whatever reason (he wanted something he couldn’t have, his favorite toy got left at home, etc.), I generally get a “pass” from strangers. But I know that as he gets older, his meltdowns won’t be understood by anyone except other “autism parents” and I will likely get judgmental stares. That’s when I will need a well-rehearsed response so that I don’t just angrily shoot back with, “Go ahead and stare, maybe that will heal my son’s autism. Then we can work on your social skills!” The more appropriate response would be, “My son has autism and he is upset. I’m doing the best I can here; please try to understand.”
I do find that most people are kind and understanding. And when they aren’t I try to educate them if appropriate to do so, or just ignore them if it’s not appropriate, or when I estimate that I’d just be wasting my breath. Try to not see your situation as a social stigma of some kind, instead turn it around for the benefit and betterment of others. Education is power; use it often and you’ll see beautiful results in your world.
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