Hello readers,
Milestones are a hot topic these days. For better or worse, the CDC has changed its guidance on some of the milestones for young children. For example, a two- or three-year-old is now expected to have a vocabulary of about 50 words. The appearance of actual speech has been bumped up to 12 months, and so on.
Whether you think this is for better or worse (in my opinion, it’s probably worse, but we’re gonna talk about that later), you can’t deny these changes keep milestones in the forefront of people’s minds. And even if the CDC hadn’t changed its guidance, most adults are aware of and concerned about children’s milestones and what they mean. That’s fine, but as I’m sure you can guess, so much focus on milestones and where children “ought” to be, places children with disabilities in a bad position.
Now, before we go any further, I want to emphasize that guidance on, and tracking of, milestones is fine and normal. Parents, teachers, and other adults need to know what to expect from a child’s development. More importantly, they need guidance so that if a child is not developing “typically,” that child can get help from the adults in his or her life. It is perfectly normal, and expected, to get help if say, your three-year-old can’t swallow and is choking on food, or if your six-year-old is still having tantrums on the level of a toddler and you don’t know why.
I question though, how the majority, as abled people, approach milestones and how therapy, “extra help,” whatever you want to call it, is used on and against children with disabilities, who then grow up to be adults with disabilities and share that they always felt like they were “wrong” somehow. Because even though ideally, therapy and milestone help should be used with and for PWDs, it’s usually used on and against them. They are worked on, not with. They don’t do things with people; they have things done for them (and are then called burdens for needing the help). Therapy and treatments are not used to show how PWDs have progressed; they are used to show how PWDs are “failing.”
Progress Made, and Progress Still to Go
I got the idea for this post after reading a Neuroclastic article about how therapy for autistic kids needs to change. In truth, therapy for autism has changed for the better. And in truth, I almost didn’t write this post at all, because author Terra Vance said so many of the things I wanted to say here, but so much better than I could. Go on, take a break and read her article before you finish. I’ll wait. 🙂
So as you can see, Terra Vance says a lot of things I’ve been saying about therapy and timetables. Namely, that we need to stop using therapy in ways that make disabled people internalize they are “wrong” or “broken,” and that therapy is in many ways arbitrary and not relevant to real life.
But then I started thinking…this post was about autism only. What if we applied Ms. Vance’s and Neuroclastic’s thinking to other disabilities, such as cerebral palsy or Down Syndrome? Or yes, even and especially the “severe” ones like moderate-to-severe intellectual disability, deaf-blindness, and others?
This required a shift in my thinking, which caught me off guard at first but that I’m glad happened now. It means I’m still learning. That is, I read the article again and I thought, “This is great, but surely you can’t apply these parameters to a disability like cerebral palsy. I mean, sure, you can say most kids will be able to dress and toilet independently before they leave for college…but what about those who don’t and won’t, because they can’t? Assuming they should be on their own timetables is unfair to them, isn’t it?”
But see, that’s what happens, even to disabled people like me, when we live in majority-abled society. The abled call the shots, and the abled have decided that, if everybody can’t dress and toilet independently by 5, take a bus by 10-12, tie their shoes by 3, those who can’t, are failures and need to be “worked on.” (No, we don’t use the word “failure,” but that’s what’s being implied, and I wish people would get that through their heads already. You can’t hope to have a decent society if you look at 15% of it and say, “You people are inherently broken, so we’ll help when and where and if we want to, but never forget, you’re the problem.” Sheesh)!
So anyway, it took a few minutes and a couple read-throughs for my thinking to shift. And then I started having flashbacks.
Spinning the Time-Turner…
I thought about my experiences with therapy. Not individual sessions, necessarily, because I don’t remember much about those. Mostly, I thought about what happened after therapy, when I went home. (Names changed to protect the innocent).
I thought about being 7, and going home and “practicing” dressing, and hearing, “Now, Becky showed you this…the tag goes in the back…” over and over. Yes, I understood the concept of tag–back. But when the fronts and backs of your clothes all look the same, it’s still hard. And it made it harder to hear these words, because the implications were, “You didn’t listen to Becky,” “You don’t understand this concept,” “You don’t appreciate all the help you’re getting from Becky and Mama and Daddy.”
I thought about sitting on the floor, trying and trying to get socks on “Bunch them up like Becky showed you…no, no, like this…Now look, you put your foot here…no, now look…” I’m LOOKING, okay? I understand English. I cannot help it if my fingers get tangled in the socks or if I cannot position my foot in this plaster brace…or if I can, proceed to get a shoe on over it.
I thought about being 12, and combing my hair exactly like Daniela the therapist showed me, only to hear my mom or dad say I was “not ready” to walk out the door. My dad would actually do stuff like take me to a mirror and go, “Look at your hair. Are you happy with your hair?” Like, “You shouldn’t be because you did it wrong and you know it.”
I thought about being 14 and 15, and arguing with my parents about why it was sooo important to them that I brush my teeth perfectly (it’s tough to get the ones in the back). I told them they were treating me like a special ed kid, like I was stupid. They denied it and said things like, “We’re trying to help, but if you don’t want help, just let your teeth rot out.”
Oooh, let’s give it another spin, shall we? This is a bad set of chapters.
Reality Check!
If you had asked my parents or therapists back then, they would’ve said my skills were “lagging.” They would’ve said, “She’s smart, but…” (the ubiquitous qualifier). I even got shamed for being smart, like, “You’re smart enough to understand the difference between you and a mentally disabled person, so don’t say you’re being treated like one” or “You’re smart enough to know when people are being mean, so don’t say they’re being mean unless they actually yelled at or hit you.” (Uh, that’s called gaslighting)! My parents and therapists may have also predicted, she will never dress or bathe independently, she will never brush her teeth to satisfaction, etc. But here’s the reality:
-By the time I was 10, I was dressing independently, including socks (my fingers needed more time to learn how to bunch, and less pressure. It is AMAZING what you’re willing to do and how much you’re willing to try, when someone whose job it is to work on you, is not watching).
-I have no more and no fewer cavities than the average person. In fact, I know I have fewer, just because of American dental care. My teeth are not rotten.
-I did “learn” to bathe independently, which meant mastering hair-washing, at around 14. This again, was because of a lack of pressure and because hair-washing is more “sensitive,” so you can’t necessarily stand over the person and insist, “Look, look, look! You’ve been shown…now look and do it this way.”
-I lived alone for 2-4 years at graduate school. Every day, I combed my wash-and-wear hair and went out the door. I was never stopped on campus and told my hair looked awful, or asked if I was happy with it. Contrary to what my parents told me, people did not constantly stop me in the street and say, “Hey! Your hair’s a mess! Hey! Your clothes aren’t straight! Hey, you’re unkempt!”
And was it embarrassing to wash my hair independently at 14, or dress successfully at 10? Yeah, sure. But I’m learning that it was only embarrassing because I had been implicitly told I was behind and failing. You’d think somebody would’ve made the connection, “She’s smart enough to hear and understand us, so she’s smart enough to recognize and feel like a failure.” (Of course, my parents’ response was, “It’s just us. You have nothing to be embarrassed or ashamed of.”)
As Emma Swan would say, really?
So, a few quick tips:
-No matter what the disability, recognize the child being helped through therapy is on his or her own time table. Give them time and space, and let them do the things they are good at. When their brain is “wired” for a certain task, they will do it, in the way that works for them. Until then, back the heck off. Part of my humiliation was being 7, or 10, or whatever age, and excelling academically, and loving to read and write, and feeling like none of that mattered because what mattered was how well I could walk, if I was showing signs of chronic pain, if I could do what little kids “already” did.
-Do not, I repeat, do not, “drill and kill” therapeutic tasks. Stop assuming that your child is not watching you, does not care, does not understand the concept of a given task. We’ll talk more about this, but one of the hardest parts of my life with CP has been, getting treated as if, because I can’t do a thing, I don’t understand the concept. (In other words, “You’re smart, so quit acting dumb.”)
-Remove the pressure. If you can help it, don’t let your kids hear how “behind” they are. In fact, don’t talk about it at all, and don’t leave information out where they can see it (this is what happened when, in high school, I found out my estimated physical/motor skills were “8 years, 1 month.” In other words, she’s 10 years behind the curve. I’m still struggling with that one. And stop standing or sitting over kids and watching them do therapeutic tasks, insisting, “Look, look, look, now look.”
-Stop making your kids feel “worked on.” If you the parent, or the therapist, can’t do therapy “with” and “for” the child, in a way that will benefit them, is that the therapy they need?
-Relax about “independent living” and “someday.” I promise, your child will do what they have the capability to do, the best they can. If they’re meant to go to college, if they want to go to college–they will be as independent as necessary before college! (Although, margin note, don’t use a lack of independence, based on abled standards, to put your young adult in a college-level special ed program).
So until next time…think about whose timetable you lived on, and are living on. It was your own, right? Right.
So people with disabilities should have the same courtesy. In their own time, they will do what they need to do–and everyone will be fine.
IndependenceChick's Nest 