Not easy to read, but worth the effort
Originally posted on Thought Snax:
“Her life was not worth living.”
“He was such a burden to his family.”
“The parents suffered so much.”
“There’s no crime here – they did a merciful thing.”
This is how the media often reports on the murders of disabled people. The reports are full of sympathy for the murderers and short on compassion for those murdered. Disabled people’s lives are framed as useless, tragic, suffering. Media writers ignore the joys and passions of the victims – maybe because that disrupts the sympathy narrative for the murderer.
Since 2012 on March 1st an international Day of Mourning vigil is held to honor and remember those disabled people killed by family and caregivers. Some vigils also include those murdered by authority figures, such as police and school personnel. This year there are…
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The day after my last post, I brought my pair of woodshop headphones with me when I went over to babysit Rhythm. And when he started to fall apart, I said “I’d like to try something for you” and put them on him.
He loved them. He wore them for the majority of the afternoon. He discovered and taught me something new, which is that if you wear them while spinning (say, on a rope swing), you don’t get dizzy as quickly.
The following day, Rhythm was watching TV when I arrived, and we did that for a while. Then, he ran over to a shelf full of books and toys and began rummaging around– something I haven’t seen him do before. Eventually, he held up a pair of headphones, the kind you use for listening to music!
“You want to borrow my headphones again?” I asked. He nodded. He wore them for most of that afternoon as well, removing them only for brief conversations with me and to listen to specifc sounds he enjoys.
He still had some stressful moments, but far less. I’ve suggested to his parents that they buy him a pair of his own.
One of the hardest things for me to get used to when working with Rhythm is that he doesn’t like me to talk much. He gets overwhelmed by either processing language or the sound of human voices (especially female/higher pitched voices, it seems), or both. I don’t know the specifics, just that he often gets distraught if I talk to other people too much in his hearing, and even more so if we’re talking about him, even in casual, positive ways.
It is both understandable and odd that I have trouble with this concept.
I am, on the whole, an exceedingly verbal person. I spoke early, often, and at great length– and I still do. I enjoy describing and explaining things, narrating events, and helping people understand complex concepts. While I’m not averse to a comfortable silence, I enjoy talking quite a lot as well.
I also rely heavily on speech for many of the ways in which I show respect to the children I work with, especially nonverbal children. Things I do verbally include:
- Telling them when I am about to do something with or to them, like removing a piece of clothing, so that they can be prepared and have a chance to object.
- Asking them to express consent or preference. (Eg. “Would you like to go outside?” “May I put a jacket on you?” etc.)
- Voicing things they have communicated to me nonverbally, for confirmation or clarification. (Eg. Child signs =music= and I say “You want me to put on some music?” Child points to the fridge and I say “Are you hungry? Would you like something to eat?” — I often phrase things multiple ways, to reduce the chance of misunderstanding or them getting stuck on an unfamiliar word.)
I especially tend to try and problem-solve verbally, making it an interactive process. But today, I had something of an epiphany.
[a side note-- Rhythm recently discontinued a seizure medication that was a heavy sedative. Since then, his parents have noted increased attention, alertness, energy, and motor control, but also a higher level of sensory sensitivity and more frequent frustration as he adjusts.]
When upset/approaching meltdown, he frequently signs =stop= and =scratch=, then scratches/claws anyone within reach. This can escalate to hair-pulling and biting, by which point he is usually in tears. It’s obvious that he’s in a great deal of distress, but it’s hard for us to tell what is triggering the distress sometimes.
Today, we had just gotten home from a walk, and he was starting to act worn out– not at meltdown yet, but at the “flop” stage– he plonked himself on the floor and starting signing =stop= over and over. I sat down with him and tried to work through it verbally, asking if something was wrong, if he could tell me what he needed, if he was hungry, in pain, needed to go to the bathroom, wanted a bath. I was asking these things calmly and slowly, trying to zero in on something I could do to make him less miserable… I hate seeing him so unhappy, and I was so at a loss for how to help him feel better.
He grabbed my wrists and scratched them, nearly crying. Then he took my hands and placed them over his ears. Something clicked in my brain, and I shut up. I finally understood that not only was he past the point of being able to answer my questions, but the very act of my asking was hurting him further.
So we sat there together in silence. After a moment, he made one of “our” faces at me, initiating a game we often play of making funny faces at each other. I responded in kind, and we made faces until he relaxed and smiled, at which point I tentatively asked again if there was something I could do for him. He asked for a drink of water. I nodded, and held out my hand to help him up.
When we went to the kitchen, his grandmother was cooking dinner, and began chattering at him cheerfully about what she was making. He fell apart again, dropped to the floor, and dug his fingernails into her leg. She suggested a bath, he agreed, and I hustled him away to the bathroom to get ready for the bath with minimal talking.
I’m honestly ashamed that it took me so long to figure this out– for a very simple reason. As I sit here writing this, I’m wearing ear-protection headphones, the kind you use in a woodshop. Because I had gotten to the point, as I occasionally do after a stressful or busy day, where I was afraid I would scream and cry if anyone else spoke to me– or even around me.
All sounds have the potential to drain my energy, but listening to speech that my brain has to process can be especially stressful, even for such a language-oriented person as myself. When I have limited processing power left, I can’t afford to spend it all on parsing information that other people are throwing at me. I was so exhausted by hearing their words that I could no longer hear myself think. All I wanted was for everyone to shut up and let me feel like myself for a little while.
Maybe that’s how Rhythm feels sometimes, too.
I need to remember how often, when a child doesn’t seem to understand what I am telling them, the real issue is that they are simply focused on something else, something they consider more important. This is true of all children– they focus on what matters to them, sometimes to the exclusion of everything else around.
How often have you heard a parent giving the same instruction time and again to a child who is playing — “don’t run!” or “use your indoor voice!” — only to see the child forget over and over as they get completely lost in their activity? Not to mention the things children ask over and over — “can I get one? Please? Pleeeeease?” or “are we there yet?” — to the frustration of parents who simply don’t understand that this question is ALL that is on their child’s mind at the time.
The other day when I arrived at Rhythm’s home to watch him after school, he dragged me down the street to a neighbor’s house. I already knew that he likes this house– they have a dog, and a rubber dinghy in the driveway that he loves to touch and rub and thump to hear the sounds it makes, and stairs up to the front stoop (he loves stairs, especially outdoor stairs). It appeared that no one was home at the time, so I was willing to let him romp around their front yard.
Usually, when he and I go walking, I struggle to find a balance between letting him enjoy exploring his own way and not letting him bother other people or do anything that would result in a confrontation with the neighbors. So, I’ll let him come up someone’s front walk and examine the architecture (he loves archways), but not knock on the door or walls. I let him press his face to the window of people’s cars but not their houses. I let him cross lawns but try to keep him out of flowerbeds.
He either doesn’t understand or doesn’t care about any of the boundaries and concepts of “private property.” Of course– I’m one to talk! As a child, I regularly snuck into other people’s yards to play. I didn’t have much experience with not being allowed into places, and I don’t think Rhythm has either. At home, he goes into all the rooms at will and has to be stopped from bursting into the bathroom to say hi to whoever is using it at the time. It isn’t surprising that he doesn’t understand privacy in that case– after all, he never goes to the bathroom alone, so why would anyone else?
At the neighbor’s house. We peered in the back gate by the boat. Rhythm tromped up the steps towards the front door with me in tow, hanging back a little reluctantly. They still had Halloween decorations and fake spiderwebs up in their front stoop, and he seemed to enjoy looking at those. Then he tugged my hand towards to door, meaning that he wanted me to open it or at least knock.
“No, we can’t,” I explained, “We haven’t been invited. Also, I don’t think they are home right now.” We repeated this process a few times– him wandering and looking around for a moment, then trying to get me to knock at that door. Me, telling him that we aren’t supposed to knock on people’s doors unless they have asked us to come over and visit, that it isn’t polite.
This kind of persistence is typical for Rhythm, and as I said before, for other children as well. The difference, when I work with nonverbal children, is that I don’t know how much of their persistence is due to various factors. In addition to the intensive focus that children give to their desires, it is entirely possible that:
1) They don’t understand that I am saying “no,”
2) They don’t understand WHY I am saying “no,”
3) They believe that I don’t understand their request,
4) They actually ARE asking for something different than I think, and/or
5) They have a counter-argument to the stated reason why I refused their request, but don’t know how to express it.
We tend to ignore those latter three possibilities with nonverbal children, and this is a problem. We easily assume that these children don’t understand us, when it is equally likely that we are failing to understand them instead. Verbal children can explain further if they perceive they are being misunderstood, and they also like to negotiate — “I promise if we get a puppy I’ll feed him every day!” or “Can I stay up for just ten more minutes? How about five?” or “I won’t be scared by that movie!” or “If you let me go to the party, I won’t ask for anything else ever again!”.
Nonverbal children, on the other hand, generally lack the ability to use that level of nuance, and are stuck simply making the request over and over in the hopes of getting their point across. And yes, it is possible that they are simply being stubborn– as all children are, at times– but we should not assume that this, or lack of intelligence, are the only explanations for their persistence.
I have a wonderful example of Rhythm using a counter-argument with me. I was getting him ready for his bath one night and he gestured, quite clearly, that he wanted me to get into the tub (presumably to make waves for him. He has me do this in the kiddie pool in his yard so that he can watch the water move, and I supposed he had no reason to assume that the bath is any different). Glibly, I answered “I can’t get in the bath with you, buddy! I still have my clothes on.” He very nearly rolled his eyes at me. Then he reached over and gave the hem of my shirt a quick tug, the way I do when I start undressing him. His meaning could not have been more obvious– “Ok, silly! Take your clothes off and THEN get in the tub.” He must think I’m not very bright sometimes!
I tried not to laugh– it was such a sensible response from his perspective. I wasn’t ready to try explaining propriety to an autistic 7-year-old, so I just told him, “Sorry, it’s against the rules for me to take a bath with you.” The experience definitely taught me a lesson about making flippant excuses! Now I always try to give him the most honest reasons that I can think of for why something has to be a certain way.
Rhythm had given up, for the time being, on trying to get into the house and was walking on the low stone walls around the flower beds. He adores balancing on any sort of ledge or narrow pathway, including ones quite high up in the air, and generally holds my arm or hand to brace himself. He usually has a pretty good sense of what’s within his abilities– although he also has a tendency to terrify his mother with his idea of “reasonable” risk! He was making a strange sort of throat-clearing/coughing noise and I asked if he was ok, thinking maybe he had gotten something scratchy in his throat. He ignored me, but seemed happy enough.
Eventually he led me around to the other side of their yard, where there was another gate in the fence. Again, he tried to convince me to open it — very persistent! I started the explanation again: We can’t just go in, it’s not polite, we haven’t been invited, etc., etc.. when my attention was caught by another odd noise. At first, I thought it was geese honking, perhaps migrating for the winter, and I looked up but couldn’t see any birds. Then I figured out that the sound was coming from somewhere beyond the fence, and wondered if Rhythm had noticed the sound before I did and was curious about it.
“Are there geese in that yard?” I wondered aloud, amused. I was mostly kidding, but Rhythm’s head shot up, and I realized I was on to something.
“Wait– do your neighbors keep geese??” I asked him. He looked at me intently, not confirming yet, but definitely wanting me to continue guessing.
“Not geese… ducks?” No response. He was still waiting for me to figure it out.
“Chickens?” He nodded excitedly. “Chickens!” I practically yelled, “Your neighbors keep chickens?!” He grinned.
Then something else suddenly made sense to me, too.
“Is that what you were doing before? I get it now! You were making chicken noises! Because you wanted to see the chickens!” His odd throat-clearing noises hadn’t been perfect chicken imitations, but they were pretty darn close, and far more realistic than the “cluck cluck cluck” noise that chickens make in all the kids’ songs he listens to.
And there you have it. I have no idea whether Rhythm listened to my explanations about why we couldn’t visit, or whether they made any sense to him. But I do know now that he was trying to tell me something, too, and I almost missed it because I was so focused on getting my message across. I assumed that I knew all the relevant information, and so I didn’t pay attention to the fact that he was trying to communicate with me. Or rather, I knew he was communicating, but assumed that his message was more simple than it actually was– just “I want to visit this house” in general, not specifically “There are chickens here and I want to see them.”
We didn’t get to see the chickens that day. I explained that we’d have to come back another time when the owners were home. With the promise that he would get to return and see the chickens at a later time, he let me lead him back to his house for a snack. I have no idea whether he would have been more reluctant to return home if I hadn’t ever figured out the purpose of the visit– but I certainly wouldn’t blame him if that were true! Disappointment is frustrating enough without the added misery of knowing that your request was never properly understood in the first place.
So I will try to remember to check my assumptions, and to put at least as much effort into focusing on what children are trying to tell me as I do into trying to get messages across to them. Mutual respect and mutual understanding– these are the bonds that humans build with each other. Empathy, compassion, collaboration, cooperation: all depend on taking the time and energy to discover what is important to someone else.
This is autism: “Ooh, stimmy!” used as an exclamation of excitement. Happy flaps at interesting patterns on the water, new colors on cars, math games, tricks of the light.
This is autism: Friends with special interests and special considerations. Trying to figure out what to cook when multiple autistic friends are over for dinner to accommodate everyone’s dietary needs and sensory sensitivities = a fun challenge!
This is autism: the kid I babysit puzzling out how to tell me something on his communication device– or relaxing in his hammock– clapping his hands at the park to hear the echos– his mischievous grin– his interesting ideas (waffles with mayo? OK, why not!)
This is autism: Struggling to find the words sometimes. Avoiding loud places. Being tired out by chatter, by things other people don’t even notice. Pride in finding the right words. Strength in doing the things I can. Joy in spending time with a small group of friends.
This is autism: learning new things every day. Not a puzzle, but a journey of life, in constant flux, unfolding like a flower, full of new things to discover like a starry sky, full of complexity and hope and wonder.
We are autism. And we will not be silenced.
I hope the following letter reaches the person it was intended for… both literally (in that he sees it somewhere) and figuratively (in that he takes it to heart).
“Please re-post the following freely on the internet:
An Open Letter to the Biological Father of my God-Son:
You seem to be completely, utterly, amazingly unaware of what being a parent entails. I know becoming a father was a surprise to you, and perhaps not something you had planned on, or at least not at this point in your life. I’m sure it was a shock to you when you moved back to this state and, upon reconnecting with old contacts, discovered that you had an 18-month-old child. I know you and your son’s mother did not part on the best of terms.
And frankly, at this point, I don’t give a rodent’s right butt-cheek. Even if your son’s mother spat in your face, mocked the size of your manhood, and denied you sex for a year, I still expect you to recognize and acknowledge the full impact of the following statement: every good thing that your son has ever had in his short life, EVERY SINGLE THING, is due entirely to the devotion, dedication, hard work, struggle, and sacrifices of this one woman. You owe her his life.
You have given reasons why you cannot be more involved in your’s child’s life at this time– disability, personal struggles, the fact that you are attending college (and, to your credit, taking child development classes). You have stated that you are not in a position to provide financial support, that your current home is not child-proof. You are not ready. Neither was she. You didn’t choose to have this turn of events in your life. Neither did she.
(But, you may think– the woman always has choices! Abortion? Adoption? She looked into both. Neither worked out, for reasons far too personal and complex for me to share. She may tell you some day. Or she may not.)
You drag your feet, and life goes on. Your son grows. He has taken his first steps, and spoken his first words. He has outgrown many sets of clothing, many pairs of shoes. I know, because I was there. I have watched as your son wakes and sleeps. I have fed him and bathed him and changed his diapers and made him laugh and held him while he cries. He has needs, and those needs do not wait for you to get your life together and learn to be an adult at your own pace.
You want visitations– but in your own time, on your schedule. Your son’s mother has no choice in her schedule. Every morning, every single day of his life, your son’s mother has to wake whenever he does (and babies wake early!). No matter if she is exhausted or sick, whether she’s shaking with fever or spent the night puking her guts up, even on Saturday, even if she is hungover (assuming she ever gets time to drink with friends!), no matter how bad a mood she is in, she has to wake up between 5 and 7 AM, and feed and change and lift your child. That is how every single day of her life has started, for nearly two years.
I saw her do this less than a week after major surgery. And I saw the blood blisters bubbling up through her stitches because she wasn’t supposed to lift more than ten pounds during her recovery, and her baby– your baby– weighed twice that and had to be lifted multiple times a day to be fed and clothed and rocked to sleep. I have seen her collapse to the floor and have trouble getting up, and I have seen her turn her face away so that your son does not see how hard she is crying. I have held her hand in the ER while she screamed in pain, and I have rocked your son to sleep in hospital halls while he sobbed to the sound of beeping machines.
You don’t want to hand money over to your child’s mother without a court order, or at least a paternity test (which you refuse to pay for). But you have resources that your son’s mother does not, resources your child desperately needs. You have a family who cares, and who probably helps you financially at times. You have a stable living situation. You receive money for being disabled– which your son’s mother does not, in spite of the fact that she has been through two major surgeries in two years and requires multiple medications daily.
Your son’s mother asked for for cash to cover a co-pay for his doctor’s visit– after she had arranged for you to visit with him. You accused her of making the situation about money. Then she asked, not for money, but for things he needed– clothing, shoes, diapers, food. You bought him a single package of diapers. He goes through one of those every week, and has done so for the past 90-or-so weeks of his life.
You bought him a toy. It was a very nice toy, and developmentally appropriate. He enjoys it. But it’s easy for us to get him cheap toys at the dollar store and thrift stores– he doesn’t know the difference. I, who am no blood relation of your son, took him to Payless and Walmart and shopped for cheap sneakers and flip-flops when he had outgrown his previous pairs. (His current sneakers have pink sparkles and hearts on them. Your son has excellent taste).
And when your son’s mother was hospitalized with a life-threatening condition, and had no money and no way to pay her phone bill and no family to help her, I– a woman with disabilities and debts of my own, who works part time for less than a living wage– I took your child into my home, which is also not child-proof. And because I had no other place for him to sleep, I put your son in my own bed, between me and the wall, and slept with a hand on his tiny arm so I would wake as soon as he did.
And when he woke (before it was light out!), I– nauseous and exhausted and foggy-brained– carried him downstairs and fixed him a bottle and took him outside where he could play (and never mind the morning joggers raising their eyebrows at a woman and toddler both still in their pajamas at the park).
And when I was too weak and sick to care for him, a friend of mine, who attends college and works and has two children of her own, took your son into her house for the night, although she had never met him or his mother.
And another couple, dear friends of mine, also took him for several days, and because their house isn’t baby-proof either, they used their sofa to block off part of the living-room to keep him safe.
And when your son’s mother was broke and sick and staying up all night applying for jobs online and between rentals and desperate to find a safe place to live, a friend of mine offered to have them stay at his apartment for a few weeks. And then my housemate stayed with her boyfriend and let them sleep in her room.
And when your son’s mother swallowed her pride and begged support groups and charities and facebook for help, a woman we have never even met used her amazon account to send him diapers and a playpen that doubles as a crib.
All of these people– and others– have done more for your child than you have. It wasn’t easy for any of us. We did these things because they needed doing, and because this is what caring, responsible, grown-up people do. And still, it is not enough. Raising a child is hard, and it is expensive, and it is a more-than-full-time job, and it is not something any woman, much less one who has been through so much, should have to do alone and on an income that barely keeps a roof over their heads.
I have never used the term “man up” seriously before, but I’m using it now. You need to man up and provide support for your child. Not in exchange for getting to see him, not because a law demands it, not to make yourself feel more mature, but because your child needs it. And his mother is happy to give you visitation rights– if you treat her with courtesy and respect as a human being, and awareness of the incredible burden she bears trying to keep your son healthy and safe and happy, at the expense of her own education and career goals and well-being.
And if you do pull yourself together and handle this like an adult– without making it about You, or about Her, but honestly trying to do what is best for HIM, for your own child… If you show that you can set your own feelings aside and dedicate yourself to making his life better…. If you are willing to struggle and sacrifice and spend sleepless nights as your son’s mother has done… Then, and only then, will I respect you as a person and call you by the honorable title of “parent.”
Originally posted on a diary of a mom:
My girl cracking herself up with scripts last night
I was once asked, “If you have so much trouble with the fact that Autism Speaks uses the words “disease” and “cure” in its marketing materials, what would you have them say instead?”
I thought about it for a moment, and said, “Well, I suppose I’d like them to implore the public to help us find ways to mitigate the disabling aspects of autism while recognizing and celebrating its more positive attributes.”
My questioner cocked his head. “Okay, so how does that read on a sign?”
I’ve never felt more awkward (this is a lie, but go with it) than when I answered, “Celebrate diversity! Mitigate Disability!”
I recognized the folly of my attempt at copy writing long before he said, “Wow, you suck at this.”
He was right. I do.
Because for me, trying to reduce autism awareness / education / advocacy…
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