To Hell and Back
In mentioning the website Strange Son—which CAN co-founder Portia Iversen has created to be an online community for parents of children who are non-verbal and/or “‘lower-functioning’”—-Lisa Jo Rudy of About.com notes that:
In the last few days I’ve heard from many parents of children whose issues are way beyond “quirky.” These are kids (as well as teens and adults) who are non-verbal and often unable to communicate even in the most basic ways. These parents are going through hell, and need the opportunity to connect, share, and advocate for their children.
In less than two months, my son Charlie will be ten years old. He is minimally verbal (years of speech and ABA therapy and teaching have helped him greatly); struggles with his academics; seems to be on the other side of a period when “behaviors” of the self-injurious kind had taken over his life and ours. Some can think my representation of him—running to get on the schoolbus, riding bikes with his dad, checking the garbage can every day to make sure nothing of his in it and that the bags are placed in with the ties up—too filled with light and hope. So be it: When you have been to hell and come back, in more or less one piece, it is a very good thing to talk about all the light that you now see—and that was always there to see, even on the worst days, in the person of your child.
To all parents now “going through hell,” please know I’ve been there, have had those moments when you don’t even have tears to cry—–there is always hope.
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POSTED IN: Parenting, Stereotypes, Weblogs
16 opinions for To Hell and Back
Michelle Dawson
Mar 28, 2007 at 5:55 pm
Lisa Jo Rudy’s assumption that there are autsitics who can’t communicate at all seems to call for one of the great quotes in the recent history of autism. You can find it here.
“Jeffrey Lurie, the owner of the [Philadelphia] Eagles, had a brother who was autistic who didn’t speak his first word until he was 35. He told Jeffrey, ‘Don’t talk to me like I’m an idiot.’”
–Doug Flutie (of all people)
Then go read Morton Ann Gernsbacher’s article, “Toward a behavior of reciprocity.” It takes more than one person to communicate. And (from experience, mine and many other autistics’; and from the science–Keen, 2005; Keen et al., 2005) it’s impossible to communicate with someone who is certain you can’t communicate. I would call trying to communicate in a situation where you are autistic, and therefore have been written off, “hell”–except I’m too polite. Anti-scientifically spreading the word that some or many autistics can’t communicate at all is harmful to autistics.
Kristina Chew, PhD
Mar 28, 2007 at 6:22 pm
Thanks for that quote—-I think it needs to be highlighted even more. And then more.
Lisa/Jedi
Mar 28, 2007 at 7:02 pm
Fabulous quote!
It also doesn’t take a non- or minimally-verbal child to make life occasionally hellish, believe me. I know that there are real differences between people with autism & that the lack of easy communication skills or apparent awareness of the world around them is a big thing (particularly in the eyes of the beholders). But to assume that life is always easier for those who do have communication is a disservice to them & their families. Nothing is certain for anyone… except that hope & a positive attitude can make the journey more bearable!
jypsy
Mar 28, 2007 at 7:19 pm
It doesn’t take a child who is autistic to make one’s life hellish and having a minimally verbal autistic child doesn’t necessarily equate with having even a touch of hell in a parents life. I’ve observed the former and experienced the latter.
Jennifer
Mar 28, 2007 at 8:02 pm
Also, I take great exception to the notion that being unable to speak means being unable to communicate.
I have a student, E., who is essentially nonverbal, with the exception of a very few words (more, bus, and lunch). She took my hand and pressed it tightly to her jaw after eating something cold (she has very poor teeth). She said without a word that her teeth hurt her.
Likewise, when a parrot squawked at a recent assembly, her face screwed up in displeasure and she reached out to grab my hand (and scratched it in the process, just in the interests of full disclosure).
This is not to take away from the challenges of understanding a child or adult who has no formal communication system — but you will NEVER convince me that the people in question are not communicating something, somehow.
Chris
Mar 28, 2007 at 11:25 pm
You know sitting in judgement of children in general has really taken a turn for me. Before 3 kids it was easy to look at parents with pitty, watching them struggle wiht a non-verbal child. And disguss watching a tantruming verbal child. I had all the answers, back then. 2 girls and 1 4year old autistic boy later, I have no answers. I have a son who will hold a watermellon while we shop and scream at the cashier when she wants to weigh it. I am sure the people in line, have all the answers too. I have 2 girls who stand there quietly, and react to my directions quickly, because they know the drill, they have to move fast, so we can get out as painlessly as possible. My 5 year old has been known to say to people, “Its ok”. “He is my brother, he is Autistic”. As young girls they are amazing with him, and with the general public. I on the other hand do struggle occasionaly. Especially when people say, “He is fine, he is talking”. I am thinking he is quoting “101 Dalmations”, he is not having a conversation with you. He has many days where he is so connected, and I can not believe the improvemet in the past year sense he has been diagnosed. Ad when we swim and he is so happy, and he says I love swimming! Then we come home to have dinner and as we sit at he table, all of us quiet, and he is off taking in his own world. My husband and I too tired to try and bring him back, and to tired to force him to eat. It seemed tonight, it was important for the girls to have a quite dinner with us. And in that same moment I still felt sad watching him recite some movie to himself. Verbal- or non-verbal, good days and bad, great moments-and tantrums,head banging and hugs, it is all wrapped up tight together. I cry sometimes, I laugh most times, I pray all the time.
Kristina Chew, PhD
Mar 29, 2007 at 12:49 am
The thing about Charlie’s communication is that what he uses words to say are the basic things—requests for food or objects, hi and bye and no. But to get his more “complex” points across–his emotions, for instance—-takes something more eleborate, whether a melody hummed, the way he runs up and down the room, where he has arrayed certain of his favored possessions.
Karen
Mar 29, 2007 at 2:21 am
My brother’s nonverbal (to a degree — he’s got words, but it’s like listening to them through water, all distorted). That doesn’t mean that we don’t talk to him, and it most certainly doesn’t mean that he doesn’t communicate.
I’m a talker. I always talked to Scott. My grandmother always talked to Scott, would sit him on the computer and type out things to him. There’s always a way for communication.
What you’ve said about Charlie’s ‘complex’ points hits home with me. Scotty will say “Go bah” to ask to go to the bathroom (something he learned in school at age twelve, argh), and other things, but when his allergies are bothering him, he wraps his head in toilet paper. We usually can tell that he’s got a really bad sinus headache before them — everybody’s cranky with a sinus headache — but it was something that made my grandmother laugh, and something he sticks too.
When he’s upset, he sometimes tears up paper. He just uses the physical to communicate more. Though once when I was eight, our mother came to visit us, and Scott, twelve, managed to say, “I STAY I STAY I STAY” about a million times.
Kristina Chew, PhD
Mar 29, 2007 at 2:36 am
“he’s got words, but it’s like listening to them through water, all distorted”: Karen, that is what Charlie often sounds like……. I have often wondered how allergies might bother him. And he tears up paper, very methodocally, when he is anxious and upset.
Karen
Mar 29, 2007 at 1:55 pm
Have you ever tried to give Charlie benedryl? My family has bad environmental allergies, and we always have reactions to prescription drugs, so my grandmother learned a long time ago to give Scott benedryl when he started his train chuckles.
Train chuckles are the the low rumbling laughter at the back of the throat accompanied by the inability to make eye contact — which I get, ’cause I can’t make eye contact when my allergies are bad (it almost hurts, and my eyes will sting and tear up).
Words help Scott a lot when he’s upset. He’ll take his magnet letters and spell out “ache” or he’ll write down “head” on a piece of paper. Words for Scotty — those are the things that I remember most about him in our childhood.
We can’t have a ‘conversation’ with him so much as type out a question and get him to type a one-word response that may or may not appear as an actual answer, but he loves doing it.
Kristina Chew, PhD
Mar 29, 2007 at 3:51 pm
Hi Karen—Charlie has had interesting reactions to Benedryl. Once it did make him fall asleep completely—another time, it made him very hyper and he could not sleep at all! Charlie is just starting a typing program and I hope he might be able to type to communicate as your brother does, someday.
Karen
Mar 29, 2007 at 4:23 pm
Poor Charlie! I wish he’d had the easy ‘calm down’ reaction that benedryl gives my family. It says it causes hyperactivity in children on the package, but my Bummy always used it to stop it.
Computers are fun for everybody — I hope that Charlie falls in love with them and finds a program he really enjoys. There was a student at Scotty’s school whose parents bought him a computer after we’d gotten some donated & found some software that he liked — parents who thought their teen son had no interest in computers at all. Sometimes it takes just the right program to catch their interest!
Autism Vox » Green in a Blue World
Mar 29, 2007 at 7:27 pm
[…] age of 4; her article resonated with me in light of recent discussions here (see yesterday’s To Hell and Back and the ongoing debate on David Kirby and Autism Speaks about what some perceive as a huge divide […]
Julia
Apr 5, 2007 at 5:14 pm
Sam is on prescription Zyrtec for allergies, as needed. It helps. It doesn’t make him hyper. If he’s on Benadryl for more than 2 days in a row, he gets very irritable, but the Zyrtec is OK for longer-term use.
Of course, everyone is going to react differently to different medications; but if Benadryl isn’t cutting it, trying something else might be in order.
(For me, I learned a trick from a friend — if you’re having allergy problems but can’t afford the drowsiness that Benadryl gives some people, try a children’s dose (12.5 mg. instead of the 25 that one adult capsule is), see if that helps without too much impairment. It’s done the trick for me the times I’ve tried it.)
And Sam may not have very much in the way of words, but he does a darn good job of communicating some of the important things, including hunger (and what he wants!) and wanting to be outside.
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Ettina
Aug 8, 2008 at 2:41 pm
To those parents who say things like “I’d give anything to have my child call me ‘mommy’” I’d like to point out that probably the hardest children to raise have no speech problems at all (or only very mild). My cousin, who used to live with us, once saw my mother cooking a meal he didn’t like, and without giving her a chance to reassure him that she was making something else for him, he started yelling insults at her. Several hours later, she finally managed to tell him she was cooking something else for him. (This was typical behavior for him.) Kids like him are much harder to parent than a severely autistic kid.
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