I have just finished riding a pretty tubular special needs wave.
A Medicaid approval, my very first IEP experience, World Down syndrome Day, and a respite refuge application came crashing in and we rode it out without wobbling. We are 4 years in on this journey though, so surfboards do not easily capsize . My husband and I handled it all like bosses and we even learned some things along the way.
Here is what I know for sure:
1. Parents of kiddos with special needs are fierce fighters and unabashedly so. Never, have I ever worn a t-shirt to a concert I was attending, but you can bet your sweet self that I wore my “Advocate Like A Mother” shirt to my son’s IEP meeting. We are proud parents who aren’t trying to pick a fight. But, we are passionate protectors of the ones we love and we know firsthand how hard they need our safeguarding.
2. Parents of kiddos with special needs are some of the kindest people you will ever meet. Although the grizzly is within us, much like the good Dr. Bruce Banner, we wish to remain calm and unstirred. We need a lot of energy, we do not wish to waste a single whisper of it. And we empathize, my goodness how we empathize. We fill doctor offices with knowing smiles, we meet moms in grocery stores ,who have screaming children, and we authentically console. We understand tired parents, piles of paperwork, bad days, and friends who are unable to keep commitments. We only stare if we want to offer up a smile, only judge if we see cruelty, and even then we don’t hold grudges.
3. We know people stare at us. What seems like forever ago, we too did not know about special needs. We curiously watched others trying to comprehend a world so foreign to us. We understand that’s what you are doing. We know there is never malice and we get it. We also hear our child being loud in an otherwise quiet restaurant. We are quite aware that he or she is throwing an abominable tantrum. We know we look different. Do not be embarrassed for looking a bit too long as you try to get a peek into our reality.
Also, I can’t speak for all parents, but I kind of like it. You know the popular Dr. Seuss phrase “Why fit in when you were born to stand out?” This resonates. I never felt like conforming. In fact, I rejected it. But that rebellious childhood story is a different tale for another time. In any case, I enjoy changing perceptions just by being seen. And while I realize that sometimes when people see our family it may invoke pity or sadness. Some others may observe us cheers-ing our drinks or smiling wildly and think “what do they know that we don’t know.” Maybe their peek inside our reality won’t seem foreign or scary or sad but more like some beautiful, whimsical secret.
4. We are very aware that people with special needs are the greatest minority group, yet, they are the least supported and most under utilized. If people with special needs were formally recognized as a minority group, 10% of the world’s population would be living with a disability. According to the United Nations Enable fact sheet, that would be 650 million people. The World Bank also estimates the 20% of the worlds poorest people have a disability. So, imagine the frustration of families when Betsy DeVos made the reckless decision to cut funding for the Special Olympics. Please refer to things I know for sure #1. We are fired up. We feel slighted. We feel less than. And most importantly, we feel sad. Because it is everybody who is losing here. The special needs community creates a narrative of overcoming, of perseverance, of unconditional love and support. It inspires. It is in fact that whimsical secret. The Special Olympics was the spotlight shining on worth. Now I am afraid that the people who DON’T know already are going to be left in the dark without a flashlight. And, in the dark, without a flash light, well, that’s how fear happens.
You will not see those of us who love our community rioting, or retaliating , or even fussing with a vengeance. We will kindly remind you of our loved one’s worth by holding hands and wearing t-shirts. We will talk to our congressmen and sign petitions. We will share inspirational stories ourselves and pick up the slack created by our politicians….And we will band together in hopes that nice guys do not in fact finish last!