Nearly 3 years ago, I shared with those of you reading our blog at that time some words of the hilarious guitar goddess Mrs. Smith to describe some of my feelings about some of the things people say to us about the circumstances we are in. At that time, I shied away from saying that I personally could use the word “rage” to describe what I was feeling. While in general I do strive not to dwell in such an intensely negative emotion, I am now in a position where I can reflect that I really didn’t even feel permission to use that word to describe my feelings.
I knew it would definitely be considered socially unacceptable for a woman in our former church to even hint she could feel that way, but as Elsa Sjunneson noted in her essay “How to Make a Paper Crane from Rage,” society in general seems to have an unwritten subtext that as the mother of a profoundly disabled child, (and here I will substitute the word I would use to say exactly how limited I believe the scope in my feelings should be as viewed by others, because Elsa definitely used the word rage), “my [anger] is supposed to be small. Manageable. Pretty. I am supposed to fold it down, make it something to consume…” Something that others will find eases their comfort level. Because in having a child with disability I have already pushed at the limits of many levels of comfort and am often seemingly expected not to express feelings about the harder aspects of this that could discomfit others, including what it’s like to experience a lack of adequate supports.
So I certainly did paint some circumstances with a heavily impressionistic style three years ago, holding them at such a distance as to be blurred and obscured, leaving indistinguishable the depth of my wounds. But things that are said and done to families such as ours (even if unintentionally so) can leave them like Mrs. Smith, feeling trapped in a dark place, disoriented, abandoned, and smearing their makeup as they try to wipe away the tears- but certainly not in the farcical manner Mrs. Smith has portrayed those types of moments.
The things that have been said to me range from the unintentionally hurtful (which can still drape a heart in grief) to the deliberately discriminatory. I’m not really going to bother to address the latter type here. Though it is the most likely to provoke a feeling akin to rage, as anyone who has ever discriminated and everyone who has ever been discriminated against knows, people doing this type of thing often have ways to mask what they are doing that can pass a legal inspection.
I am going to chip off a tiny piece of that three years old word painting, and show the preliminary sketch of what lay behind the stories I did relate three years ago. And it involves more moments than I would have liked with someone who had approached me to let me know I was to never ask them to help with Tony (and I hadn’t ever asked these individuals before I was told this from them) coming up to me on later dates and saying, “So what did you do for [fill in the blank here with a holiday or special occasion]? That must have been so great for you to have a day off from everything you have to do and get to relax and enjoy yourself. You know you really deserve that!” And then they’d wait smiling for me to answer.
Crickets chirping. That’s what I wanted to answer.
But then I often found myself biting my tongue so that I didn’t say, “you personally don’t feel comfortable helping out with our son…so exactly how many people do you envision that we can find who do that could have made any of that possible?” I would settle for taking a deep breath, and letting them know that I stayed home and taken care of my kid. And then I would walk off.
By and large, special occasions are long dead in my world, y’all. At least as they used to exist, and how they still exist for many people in this country.
Many people who ask that type of question have never made a declarative “don’t ask me” statement, they just aren’t really aware of exactly how challenging it can be depending on what is going on with a kiddo- perhaps extreme sensory differences, nonexistent risk assessment, additional size for the age, the capability to plan diversions to get something, other more intense behavioral challenges, or all of the above- to find anyone who is not celebrating themselves and feels comfortable to babysit.
People often innocently ask about Tony’s friends in the same manner, and I have to tell them he doesn’t have any really. Generally other parents don’t feel like Tony would make great friend material for their kiddos…and certainly, they have to make decisions based on what they think is best for their own child.
But, this isn’t so much a post about my thoughts regarding these types of moments, it’s a post about my feelings and what other families in our circumstances might be feeling…and ways I think each of us can be optimally supportive. I find that right now it feels most comfortable to me to use the words of others to paint a picture of what my feelings have been. And in homage to Mrs. Smith, I am going to borrow a few lyrics from some fabulous heavy metal songs. And I warn you, this mash up could feel as dark for you to hear as can the musical style these lyrics come from. But I think it is something real that is felt in the heart of many parents and caregivers of profoundly disabled loved ones, and it deserves to be heard.
Our journey started out with what Tony might have been feeling as judged based on his actions, seemingly in a similar place to Mrs. Smith’s rock journey as she was belting out Metallica’s “One.” “Darkness imprisoning me, all that I see, absolute horror…trapped in myself, body my holding cell.” Children with extreme sensory differences walk in their own nightmare, and hopefully someday Tony will feel more inclined to tell us exactly how he was feeling, but based on his actions, we know much of it was intensely negative during his first few years.
Then we move along to a group singalong next, where Tony’s singing “tell your children not to hold my hand, tell your children not to understand,” as adults around him sang “not about to see your light.” And I whispered “But if you wanna find hell with me, I can show you what it’s like.” (Danzig, “Mother”) To this, many might growl back to me a chorus of “hush little baby, don’t say a word!” (Metallica, “Enter Sandman”).
And then perhaps I might sing a jumbled medley along these lines: “someone take these dreams away that point me to another day,” (Nine Inch Nails, “Dead Souls”) “anxiety’s attacking me, and my air is getting thin, I’m in trouble for the things I haven’t got to yet,” (Megadeath, “Sweating Bullets”), but “I will remember the love our souls had sworn to make, now I watch the falling rain,” (Pantera, “Cemetery Gates”).
But at the end of the day, I don’t want to be forever weeping or internally screaming “angry again, angry AGAIN, ANGRY-OW!” (Megadeth, “Angry Again,” italics and caps emphasis mine). I have personally come to prefer the view of the Stoics on matters such as these, which involves focusing on what I can control rather than what I can’t, while doing what I can to embrace the most positive emotions possible. Not everyone is ready or feeling able to seek a more tranquil place about any of this.
Something I would like to share with those of you who are new here is how I would recommend those types of questions be framed, and that involves being mindful that the parents of an individual with certain disabilities might not be having any kind of special occasion. Because even though so many of Tony’s intense behaviors are either dramatically improved or extinguished, our Valentine’s day celebration this year still is going to be only a short and quiet dinner (that could easily get interrupted or ended) on the balcony during the last hour of a clinical supervision overlap on Feb. 15th.
So perhaps maybe ask, “Do you have anything you’re looking forward to coming up?” Or maybe, “What was the happiest moment you’ve had recently?” And when it comes to friends, unless you’re a therapist who needs to know, maybe just go with “what does your kiddo like to do?” Because they might not have friends. And the happiest moment anyone in that family is having might not be a holiday, it might not be a birthday…and it could possibly lead to a parent or caregiver of a disabled loved one feeling grief or rage to assume differently.
