Someone asked me recently a question about teaching personal hygiene to their nonverbal child. This was a question about shaving, in this case legs, but it could have been about underarms and certainly could apply to young men’s facial hair as well. It got me thinking about how I doubt my gut instincts or at least question them or perhaps even ignore them when it comes to my Autistic daughter and why that is. This post is not well thought out, I’m just going to say that right from the beginning. I’m mulling this over and would love other’s feedback. Think of this post as a doodle pad and feel free to add your own doodles.
I’ve noticed that when confronted with a question about how to move forward with either of my children I use a couple of different methods to figure out what to do. First I speak with Richard, then in Nic’s case, I’ll speak with him and ask a lot of questions, then I usually will speak with Richard again, sometimes he will have gone to Nic and the two of them will have talked about whatever it is too. We will then discuss, often getting sidetracked with our own histories, there will be lots of comparing notes and then if both of us are still unsure as to how best to proceed we will ask friends, look for literature on the subject, go to the internet, seek professional help, call my mother. (This last is said in jest, sort of, except that sometimes it’s been true.) The point is there are a number of steps we typically take and so far this approach has worked out pretty well.
But what about when your kid’s language is limited or nonexistent, what then? This is where the part of my brain that is firmly rooted in neurotypical thinking gets into a rut, like a record that keeps skipping until you pick the needle up and physically place it elsewhere. I want to change my thinking when it comes to parenting my daughter. I don’t like that I don’t automatically go to her and try to find other ways to communicate with her. I want to make a concerted effort to do things differently, because here’s the thing, Emma has shown me countless times that she can and does have an opinion on any number of topics. I may not have the kind of conversation I can expect to have with my son, it may take more planning, it may not be as “easy” but it is possible. I have to train myself. I have to teach myself and here’s the big revelation – often it takes me a while to learn, but I can and DO learn if I’m patient with myself and give myself the time and encouragement I need.
A couple of months ago I asked Ib (totally and unabashedly giving her new blog, Tiny Grace Notes AKA Ask An Autistic, a plug here because it’s a much-needed and awesome resource, she’s brilliant and I love her, I love you too, Richard, but in a more, you know, marriage-y kind of way :D) anyway, I wanted Ib’s help in trying to interpret some of Em’s scripts. Ib and I brainstormed, but what became clear was that I was looking for a key to unlock her language as I understood it and what Ib kept (patiently) trying to explain to me was that I would never be able to achieve a word for word translation. At one point Ib said, “Do you speak another language?” And I said, “No. I barely speak English, but if you think learning Russian will help me, I’ll learn it.” Ib (I imagined her taking a long, deep, breath) said, and I’m paraphrasing now, No you don’t need to learn Russian, but you need to try to feel what the emotion is in what she’s saying.
At the time, I was completely freaked out, couldn’t understand what she was talking about, but then after a few more conversations, and thankfully Ib didn’t give up on me, I began to understand, I think, what she meant. My literal mind wants a word for word translation, but that doesn’t work. So I’m learning to train myself to ‘hear’ her words differently, which brings me back to the first paragraph regarding questions about parenting and teaching and puberty and everything else. I admit, I’m fumbling my way along here. I don’t have any concrete answers, but I do know that listening is a huge piece in all these questions. Listening to my children, listening to their sensory needs, but also listening to my own instincts.
Questions about puberty, hygiene, shaving and other such matters, I will continue to seek advice, particularly from my Autistic friends, while also taking into account my specific child first and foremost. If it’s a question that is ‘optional’ such as leg shaving, how does my child feel, is it important to them, do they care, are they interested? On issues like teeth brushing, where negligence will result in cavities and larger problems, I don’t think twice. I started teaching both my children how to floss and brush their teeth when they were toddlers. Both kids need to be reminded, but I don’t grapple with whether I’m doing the right thing, I know I am, I know how important it is. But some of this other stuff, I begin to second guess myself.
Em and I have a routine at night. When it’s bedtime she’ll say to me, “Mommy come.” So I will go into her room with her where she lies down and then pats the bed so that I will lie down next to her. In the past she’s said, “Mommy read story.” And I have. But for the last few weeks she hasn’t said that, but instead has talked. At first it sounded like scripting, but when I listened to her I realized she was talking about people and school, the bus, sleepovers, listing people she misses or things she wants to do, just the way my son used to do when he still wanted me to lie next to him at night. So I started asking her, “Hey Em, would you like me to read to you or do you want to talk first?” Every single night Emma responds, “Talk first, then read.”
And honestly. How awesome and amazing is that?
“Talk first, then read.”
Em, Nic and Friend
You know, I still haven’t decided what to do about the leg shaving situation!
To answer some questions from the comments yesterday – Marisa does not care. It does not phase her in the least. In fact, she hates being “messed with” by me entirely. For example – she still cannot brush her teeth independently. She knows this is something we have to do, morning and nite, that she can’t get out of. So, she’ll let me do it – when I try to get HER to do it, she gets angry. But it’s obviously important, and we get it done.
Her hair (on her head, not her legs, lol!) is another issue. She despises me combing her hair. Lucky for me, it’s very easy to care for. It’s thick, dark, and straight. We literally take a bath at nite, shampoo, and let it air dry. The only thing we do in the morning is comb it, and maybe put some barettes in. When it was longer, she wore a ponytail every day. But honestly, you could shave it all off tomorrow, and I don’t think she would notice, or care.
So, obviously, the shaving the legs thing is more about me than her. I do already do her underarms, with one of those battery doohickeys that are meant for facial hair. I just draw the line at bushy underarms in tanktops, kwim? If the hair on her legs weren’t noticeable, it’d be a no brainer. But it’s very thick, dark, long, and noticeable. I don’t want her getting made fun of over it, you know?
This is where you are far luckier than me, Arianne. You’re right, how DO you ask an opinion of a non-verbal child? You can’t – I can only take my cues from the fact she doesn’t like being messed with. Should that be my answer right there?
Making decisions for my son is so much easier. He is so vocal about his opinions, what he wants, asking for things, etc. I discuss it with his dad, we make a decision. Easy peasy. For nearly all things Marisa related, I’m the one with the final say. I do, of course, discuss everything with him. But ultimately, whether it’s a topic like this, what to do for her therapies, whatever – he’ll give his opinion but leave it completely up to me. 😦
On another note, I didn’t realize my innocent question was so thought provoking, lol! 😉
It was thought provoking as are almost ALL your comments and that’s one of the gifts of this blog. People comment and it gives me a great deal to think about. I’m really grateful for that.
One thought I had as I read your comment here – does Marisa feed herself or does someone need to help her with that? I ask, because if she is able to physically hold a fork or spoon, she would physically be able to hold a tooth brush and if she can hold a utensil, and is able to tolerate the toothbrush it might help to introduce her to an electric toothbrush. Unless her sensory issues can’t deal with the feeling of vibration in her mouth or the sound it makes. Emma loves using an electric toothbrush exactly FOR those reasons and while we do have to remind her and help her from time to time she’s learned how to brush on her own. I just want to emphasize though, it’s taken about TWO years. I emphasize the time it’s taken as a reminder to you (and to me) that what we may think “should” take a set period of time, is not often the case.
It has only been in the last few months that Emma can take a shower and wash her hair entirely on her own without anyone else in the bathroom with her. I had some help with that about 8 months ago when I reached out to a couple of Autistic women I know who related their own rather awful experiences with their parents where it was invasive and made them feel awful about themselves. Because of their experiences I completely rethought how I was trying to teach Em and began doing things very differently. For example when she was fully clothed and sitting somewhere relaxing I would role play with her. We would pretend to be in the shower and I would show Em how to wash and then rinse her hair, in a non threatening, non invasive way, making a kind of game out of it with lots of high affect and whenever she seemed to feel even slightly anxious we’d stop and begin dancing or running around making evil laughing sounds. I also would pretend to wash her hair and then have her pretend to wash mine. She thought it was hilarious to wash mine and I ended up looking like the end of a mop, but hey, it worked and she’s a pro.
Yes, Risa can feed herself. She does, however, usually make a mess. We had pizza last nite and you should’ve seen the end result – good thing bath time is right after dinner!
We’ve tried an electric toothbrush, it didn’t seem to make much difference. I don’t think the vibration/noise bothered her, she just wasn’t any more interested in doing it herself than she was the normal one. It ran out of batteries, now we use it as a regular toothbrush, lol!
Another thought I had on the is it important to me/or her line of thought. A few months ago, Joel and I got in a vicious fight about this. Her face was very broke out – acne wise. (Another joy of impending puberty!) Anyhow, it was looking pretty bad, he kept telling me to take her to the doctor. I finally asked why, it doesn’t bother HER – he got furious with me. “That doesn’t mean we shouldn’t help her look better” – my line of thinking was totally wrong, in his opinion.
After considering more carefully, I decided he was right – not for the exact same reasons. But I realized that severe acne can actually HURT, so we’d better do something. It’s been a few months and her face looks much better, though she still gets breakouts.
His opinion on the whole leg hair thing is that we should do something about it, since it’s so noticeable. I should also inject here that she has alot of facial hair above her lip. About six months ago, I started using the little battery wand thing on that, and her underarms. She doesn’t like it, but I just really feel like, personally, I don’t want my kid walking around with a mustache and underarm hair, kwim? It might not bother HER, but* I’m* just not cool with it. Does that make sense? Of course I don’t want too traumatize her, but now, I fear that’s what I’m doing.
This may seem like a really obvious question, so forgive me if this was the FIRST thing you did, but have you asked Risa whether she would like help shaving her legs, or upper lip or underarms? Have you asked her if she wants you to? I’m curious as this is something that I sometimes still forget to do (I am ashamed to admit this) but it is one of the ways I am trying hard to retrain myself. I mean Risa can shake her head no or yes or use her typing machine she has, right? I know when I’ve asked Em, and had assumed she wouldn’t comment I’ve been wrong more often than not. Just a thought…
The only thing she says on her typing machine is “I want to drink soda”. She’ll shake her head yes or no, but she sometimes gets them confused.
The thing is, and I feel badly about this – she’d likely say no. And then I’d likely do it, anyway. I know it’s my hangup, not hers. I guess it’s just that she already gets enough judgement and stares for being autistic. I don’t want to make it any worse, you know?
Like, last nite when we had the pizza – we laughed at her messy face, cause she’d enjoyed it so much. I was going to take a picture, and Joel objected – what we find funny/cute in private is one thing, but he thought a picture like that was not appropriate. And giving it a moment’s thought, I realized he was right.
So no, to answer your question – I haven’t asked her, persae.
Arianne, I know you think she understands way more than she lets on, and in her own way, I’m sure she does. But her and Emma are WORLDS apart when it comes to what they comprehend. Take the tooth brushing thing, for example – I literally cannot even get her to spit the toothpaste out after brushing her teeth. She’ll sip the water, lean over the sink, but still swallow it. No matter how many thousands of times I’ve showed her.
It is so wonderful that Emma is bathing herself/washing her hair independently. I DREAM of the day Risa might be able to do that! Coincidentally, my son just started doing this very thing. He can take a bath, shampoo, wash himself, dry himself, put on jammies, etc. now all by himself. He probably could’ve done it long ago, but ironically, it almost makes me wanna cry cause he’s “so grown up”. If Risa did, I’d wanna cry cause it’d make me so happy. Like I said, ironic!
Angie, I HAVE to assume she understands, because to do otherwise and be wrong would be far worse. This is something I cannot risk or would be able to forgive myself for. But there’s a much bigger and more important reason to believe and that is when we assume great things are possible, great things tend to happen. It’s human nature to strive for independence, to communicate, to connect, ALL humans want this. Given a little encouragement we can do things we never imagined possible, but given nothing or criticism we wilt, become sad and angry. (I speak from personal experience on this one.) 😀
I was teased a lot in middle school for not shaving my legs when I first hit puberty. I didn’t understand the point of shaving (still don’t) but I did it just to stop the teasing. Now? I just wear long pants all the time, if I absolutely /need/ to shave I will but i generally hate doing it. I don’t wear tank tops so underarms aren’t a problem either.
Wish I could help better though.
I think your comment IS helpful! I hate shaving my legs too and wish I’d never started when I was young. On the other hand my hair is very light, both in quantity AND in color, so I can get away with going for weeks at a time without. I too shave only on a need to/must basis, but left to my own devices never would. Underarms either, for that matter. But there’s another piece to this, which is that I think a great deal of emotional scarring can occur when a parent is inappropriate or invasive in matters such as these. I would much prefer to err on the side of caution and NOT do something if I felt there was any chance it could be perceived as upsetting by my child.
I’m not sure how related or useful this is but’s it’s popped into my head so I’ll share. My son came to me at a few points over the summer and made it clear that he felt i was in general too critical of him. Which was painful to here but i wanted to respect it and look for ways to lay off. We have a Spec Ed teacher who we pay privately to consult with us and I mentioned this to her. She pointed out some of these types of behaviors that I was getting on him about (the six year old boy equivalents of a girl not shaving her legs). They were things in good conscience i wanted him to stop so he doesn’t get made fun of. But, for a kid who has to hear constantly how he doesn’t hit the mark in so many situations, it was just too much. I’ve had to restrain my own fears of people making fun of him. I simply tell him now, Here is why we don’t do that. If you continue others may make fun of you. It’s your choice. I have to respect that and let him learn his lessons and make his choices in his way on these murky in between things like you mention because as you said my imposing my fears and ideas was causing pain for him. Still feeling my way to the answers over here too.
Yeah, none of this is black and white. The two women I spoke with last spring told me about some of the things their parents did, like getting into the shower with them to help them wash themselves and wash their hair, one said her parent stood outside the shower and how that made her feel she had no privacy and she felt shame, which is why I started doing role playing with Emma in a ‘safe’ place unrelated to the bathroom at a time when she was relaxed (and fully clothed). We’ve been lucky and that worked. It is clear to me Em really wants and needs her private space. The bathroom is a place for privacy. Her bedroom is too and I want and hope I have done a good job encouraging that. But I also know that if Em needed more hands on support, it would make something that’s already murky, even murkier.
I had a similar issue as far as shaving my legs go. My parents were reluctant to take up anything that might be a battle with me. In fact they claim they concluded I didn’t need a bedtime as soon as I could walk because their attempt to put to me to bed was a miserable failure anyway.
They did one day insist on antiperspirant. I was sent off to cadet camp though at 14 without ever having shaved my legs. This was much like going off to grade 7 in a yellow see through shirt without a bra sigh.
For a non-verbal child unlikely to be in a situation where they will be entirely at the mercy of verbal children without any adult intervention and who has to have other self care done for them and dislikes it it wouldn’t be a big priority for me. Heck I still don’t like to shave my legs because I am fairly dyspraxic and it isn’t possible without blood shed. There are swim pants now since awareness of skin cancer has gone up that can be worn without a second look. For shorts season I suppose they are less practical though.
When I did start shaving (at cadet camp so I would not get teased every physical training session) and returned home my mother was keen to make sure I had not shaved above the knee as her theory was then I would always have to. I am not quite sure why she didn’t provide that motherly wisdom a little sooner. We lived on a lake that meant the years before going off for 6 weeks at a time I had spent time around my classmates who were all shaving.
Self care is still an embarrassing battle in some ways. Not with anyone else but with myself. Well others play a role. One of those things everyone seems to “know” about autism is we might not attend to our hygiene. Rolls eyes. I almost never have that issue as one of the things firmly embedded in my routine is showering and I obsess about things like if I eat after I brushed my teeth and yet I get questioned on this while other more useful things to ask me about don’t seem to make the list of my current support.
I think when you can’t know how the child is going to take it and can’t know how much of what you say is making sense you have to pick your battles. If you can know to some degree like my parents, ideally you would revisit your surrender due to battle fatigue back when you didn’t know and at least make some attempt to be some sort of shield against the most obvious bullying. Being invasive in ways that are also in all likelihood a sensory issue though may not be the way to go. There are creams (although they do stink) that might overall be easier.
Thanks Gareeth. I’m curious, have you ever written a “directive” for your care givers? I wonder if you wrote out some of the things you would prefer getting help with, perhaps they’d be able to “hear” you better. Just a thought and I apologize in advance if this is something you’ve already done ad nauseum.
When my sons get older, I will not predict for them that what they are doing or what they are like is a thing that will make others mock them. This is because if people make fun of you it is not your fault, but rather due to the fact that the people doing it don’t know better than to act like bullies and ignorami. It is important to me that my children always know without a shadow of a doubt that I am on their side. So, I will happily explain popular customs and discuss what “in” means and whether they want my help investigating the attainment of it (I doubt they will, but they might) but I do not want there to be any risk that I am sending a message of agreeing with mockers, you bring it on yourself, or the like.
However if they are being bullies or morally wrong in some similar way I will explain the objection. Important things are important to deal with even as I am on your side. I hope this distinction makes sense. Ib
Well since in theory I can talk when I am not stressed out the people I have to contend with the most often are not very open to directives. Those who are the least stressful and most useful have a good idea of what I want but it is a bit too random who shows up at my door.
There have been times when we suspected in advance the situation would be stressful enough to cause a shutdown in communication that something was prepared in advance but that only works well for those rare I know this is probably going to stress me kind of situations. When I had my knees replaced because I had nearly had a surgery cancelled the previous year when stress left me unable to communicate the occupational therapist for the joint replacement program did write up a plan with me. As it turned out since they also prepared me pretty well and my doctor has a relative on the spectrum the worst case scenario didn’t happen.
My psychiatrist is pretty good at the moment. Have not had one or needed one for eons but he does listen and direct people in appropriate ways. The hurdle recently as far as appropriate care has been my case manager. (I loathe that label) In theory they should be co-ordinating all services and be taking direction from my doctor and myself about that but in practice I am not quite sure what is happening. I think my psychiatrist has some plan to lop off her head and put it on a pike in the lobby to smarten up the rest of them at this point but that just may be a fantasy of mine… ( I played too much Rome Total War in my lifetime)
It probably isn’t a bad idea to write up something in general about the kind of things that have been an issue for the team currently mostly dealing with me although that is likely to change in the near future sigh. My experience though is that those who are most likely to be understanding and useful don’t need these things written out and those who do won’t be anyway since their mindset is too much I am the one with the deficit so they couldn’t possibly gain anything by listening to me on any level beyond the amount they need to to make it seem like they do.
It is I suppose a form of bullying when a caregiver type makes a joke when I take something literally and momentarily panic before the default switch in my brain moves that someone has to have a sense of humour but is there an effect way to combat someone with that sort of power over your life? They can wash their hands of me at any moment in theory simply by stating (and it’s happened before) that since autism is my primary issue I don’t meet their mandate.
I too worry about puberty issues and how it will all play out in the end……(explicit warning)!! 🙂 I rec’d a call from one teacher yesterday that Brett had been “touching” inappropriate areas on himself and that I should know and did I have any ideas on how to redirect it etc….. UGH! This is totally not even a subject I wanted to be dealing with at 8 years old. So then I fast forward to teenager years and wonder if we will even be able to leave the house! 😦 I researched things and found that it’s obviously pretty typical for all boys and that the trick will be helping Brett to understand that it isn’t OK in school. Not 100% sure how that will be done but alas, I can’t consume myself with worry about it. I assured her that I am sure he just thinks it is soothing and that he doesn’t mean anything else by doing it. I put him in pants that button or snap vs elastic….that is my first choice for potty issues because he can’t button or snap yet. I just try to take things day by day so I don’t “what if” everything but these are challenging issues for any pubescent child. I just had to explain things regarding menstration etc…..to my 10 year old daughter and that took me months to get up the courage to do! 🙂 Perhaps I haven’t really addressed what the entry was intended to be about but it’s what I have been dealing with this week!! :O) You said I could “doodle”! :O) LOL!
Pingback: Friendship – Another Myth Regarding Autism | Emma's Hope Book