I like scripting. A lot. Especially song lyrics – there probably isn’t a scenario that exists that I cannot internally conjure up a related lyric to some song (though I might not state said lyric aloud because it might not be socially appropriate for the setting).
I was originally going to title this post “As he is,” and then changed it to, “Just as he is.” But…because scripting…my mind wouldn’t focused on something and wouldn’t let it go. So the title has been changed; h/t to Bruno Mars for his contribution:
“…When I see your face
There’s not a thing that I would change
‘Cause you’re amazing
Just the way you are.
And when you smile
The whole world stops and stares for a while
‘Cause, girl, you’re amazing
Just the way you are…”
Today is my one of little nephews’ birthday. The fact that I can even write that is pretty phenomenal. I suck at remembering dates and times and unfortunately miss/forget a number of significant occasions until after the fact. Other than my children’s birthdays, my mother’s birthday, my siblings’ and spouse’s birthdays, my children’s “Gotcha Days,” my own birthday, and my anniversary, for the most part I can’t tell you off-head when anyone else was born/got married or whatever. I have a friend who got married on her birthday and I was one of her bridesmaids…yet year after year the day eludes me and I fail to remember to contact her to commemorate the date despite the fact that I was there when it happened!
But P’s birthday sticks with me because it reminds me of a math problem. He was born in 2015 on the 8th day of July… in my mind whenever I think of his birthday, I always think of 7+8=15. Thus, it’s very easy for me to remember. His sister’s birthday, on the other hand, eludes me. I know it’s sometime in August, but I have no idea which day (I’ll look it up, though, after I finish writing this).
Birthdays can be a joyous time. I am thankful for the blessing of his life. I am grateful that he continues to develop and grow. But birthdays can also be stressful. There are a lot of “expectations” that society has with regard to children and birthdays that aren’t necessarily suitable for our family.
You see, my nephew isn’t neurotypical. He has no formal diagnoses at this time, but he has been setting off my inner “Aut-dar” quite loudly for a few years now. P is primarily nonspeaking. Occasionally he has might speak some words (i.e. “Mama”), but generally he does not communicate in that manner. He is, however, very communicative with his body language, and his receptive understanding seems pretty sharp.
P is uncomfortable in many social settings, particularly unfamiliar ones, though he makes efforts to tolerate them. He has strong preferences, especially sensory ones, and for the most part he doesn’t respond in a conventional manner to questions or statements. He isn’t enamored with eye contact. When he is fond of something or someone, he’s all in, and when he dislikes something, he makes that quite apparent.
So his birthday is not necessarily going to be celebrated the way many would expect – with a party and a bunch of people and commotion. Because while that might be enjoyable for others, it would not be for him, and since it’s HIS birthday, not someone else’s, it should be spent in a way that makes HIM happy. Doing things that HE loves with people HE wants to see in places where HE feels safe wearing clothing that HE feels comfortable in.
P grasps a lot more than people give him credit for though he might not display it in a manner that is easily recognizable by most. Outsiders aren’t really certain how to react to an individual like him, so they seem to either underestimate him (i.e. talk to/treat him like a baby, or go overboard trying to make him say or do something a typical child his age would, or ignore him) or misunderstand him (i.e. mistakenly assume that he is spoiled and/or being intentionally “difficult”).
P is close to his family, particularly his father; he can almost always be found clinging to Daddy’s leg or arm. He is protective over his younger sister, and he adores his “big” cousin (my youngest son). I watch MY baby running around with his little cousins and it moves me to see how much they admire him and enjoy playing with him. When they’re around, he’s not the “little one” like he is at home, and with them he gets an opportunity to be responsible, lead, and be looked up to by someone else. It’s sometimes bittersweet…as it allows me to observe the big brother way he might have become if I hadn’t lost the twins. But that’s a post for another day.
While I love to watch them having fun together, it also fills stirs up a different emotion. One that isn’t very pleasant. And that emotion is apprehension. Or to put it more bluntly, fear. Tremendous fear.
Part of it is a sad, but very familiar fear. As a mother of children of color (in our case, Black) with various disabilities, I am unfortunately well-versed in the various ways that my children’s appearance, mannerism, body movements, etc. increases the likelihood that they will be misperceived by others. I recognize that due to factors such as racism and ableism, my children are more likely to be viewed as a threat than their White and/or non-disabled peers. My older sons both tower over me; my youngest child is now close to the height of my shoulder. All are dark-skinned Black boys with fairly athletic builds.
I am aware that no one is immune to being impacted by bigotry. Discrimination comes in all shades, affects multiple genders, is felt by people of various ages, etc. However, because of the reality of the specific place that I dwell in, I am accustomed to having slightly less fear at times for my youngest daughter than I do for my sons…in part because of skin tone. While my boys are of a hue similar to a rich cup of coffee without cream, her complexion is closer to caramel (though she’s still unmistakably Black).
My nephew P, though slightly darker than my daughter, is perceived by some to have a slightly racially ambiguous appearance as a result of his Jamaican/Nigerian/South Asian heritage. (He’s obviously a person of color, though; there’s no doubt about that.) But despite P having a looser hair texture and lighter skin tone than my son has, it’s clear to me that my son has privilege in a way that P does not. That, for me, is a less familiar fear, but it is a fear nonetheless. If the world will potentially view my kind, loving Black disabled son poorly, how much worse might they view and try to treat my nephew?
My son might be a dark-skinned Autistic Black boy, but because he frequently communicates by speaking, he is regarded differently than his nonspeaking lighter-skinned Autistic cousin. As more “advanced.” As “higher functioning.” Even though one’s ability to speak or not speak is NOT an accurate measure of how “high” or “low” a person’s so-called functioning is, and even though people aren’t grades…we’re people, and shouldn’t be categorized in such a hierarchical manner anyway.
Two precious boys. They share (some of) the same DNA. They share the same last name. They likely share the same neurology (though one has yet to have it as an “official” diagnosis on paper.) So many things are the same about them, but there is a key, unmistakable difference. One that is unfair and yet undeniable. Though they will likely both face racism and ableism in their lives, because he is mostly nonspeaking, P has to contend with a different level of ableism than my baby boy does.
Because at the end of the day, we might be in 2019, but there are people out there that still have the inaccurate belief/vicious, hateful LIE that nonspeaking = nonthinking and maybe even nonhuman.
But they’re wrong.
P is a blessing. If he never utters another word aloud, he still communicates every single day. There is more than one way to express oneself; speaking isn’t the “be all” and “end all” standard we must all adhere to.
I refuse to let anyone pathologize the way my nephew communicates.
Because, P, you’re amazing.
Just the way you are.
Happy birthday, sweetie. Auntie loves you.