I am reading Anne of Green Gables to Emma. Three years ago it would not have occurred to me to read her a book that I might have enjoyed at her age. Three years ago I was “reading” picture books to her before bed. Three years ago I did not assume she understood the stories in those picture books. Three years ago I not only did not assume my then eight year old child understood what I read, but I also did not assume she understood 90% of what was being said to her. Because I did not assume she understood I treated her as though she couldn’t understand. I treated her as though what I thought was a fact. Then I learned I was wrong. Not only did I learn my assumptions were incorrect, I began to see how those assumptions caused me to act and treat her as less capable than she actually was. I treated her as though she couldn’t and I didn’t see how this attitude was hurting her. Instead of teaching her to do things for herself, I did them for her. It was quicker, easier…
I wrote a post not long ago ~ Presume Competence, What does that mean exactly? People have a tough time with the idea of presuming competence, let alone putting that idea into action. I get that. I did too. Here was a child, my child, a child we had been told was capable of this, but not of that, a child who was treated by society as much younger than she actually was, a child who, because of her unreliable language did not have conversations with us, did not answer most of our questions, never asked us questions, and so we assumed had little if any interest in such things. We made the mistake of assuming language retrieval issues were indicative of lack of intent and desire. We made the mistake of limiting our thinking and therefore limited our child. We thought we knew, until we didn’t. We behaved as though what we thought was true and our behavior and actions or inactions fed into that erroneous thinking.
I’ve spoken a great deal about the brilliant documentary by Gerardine Wurzburg, Wretches and Jabberers. I continue to urge everyone I know to watch it because it is the best illustration I know of, that explains the concept of presuming competence and what can happen as a direct result of doing so. It is a highly entertaining, moving documentary following two (mostly) non-speaking Autistic men as they travel the world meeting other non-speaking Autistic people who are all far more capable than society believes. Many are in “life skills” programs or work initiatives doing menial tasks like paper shredding and folding towels. They type about their mind numbing boredom and brutal frustration they feel as a result of being treated as far less intelligent than they are.
Presuming competence is an act, it isn’t just an idea. Presuming competence is the single most powerful action we have taken that has directly helped our daughter flourish and grow. Nothing, absolutely nothing else we’ve done has helped Emma as much as presuming competence. When we stopped limiting her with our limited beliefs of what she is or isn’t capable of and began giving her the information and materials she needed, she has taken off. In school she is being taught grade level science, at home she is being taught grade level geography, I am reading age level fiction and nonfiction, she clears her own dishes, cleans them and puts them away. She sorts her own laundry, helps fold it and knows how to make pancakes without assistance. She takes a shower on her own, has learned to shampoo her hair and brush it afterwards. She brushes and flosses her own teeth with minimal support, she dresses herself. When it is clear she needs help learning to do something, we help her, without admonishment, without distress, but instead with the knowledge that she will eventually learn to do it on her own.
Presuming competence does not mean we expect her to know how to do something without support and instruction, it means we assume she can and will learn with appropriate accommodation. This is is a very different way of thinking than either assuming she can’t do something and never teaching her, or teaching her, but requiring her to prove her knowledge over and over before moving on. With reading comprehension we realized we were asking the wrong questions. Often we were asking her to answer questions that were not obvious to the story. When she couldn’t answer, we’d dumb down the reading material and then wonder why she wouldn’t pay attention.
In the beginning, presuming competence felt like a leap of faith. It scared me. I didn’t want to get my hopes up. I didn’t want to feel the disappointment that I knew I’d feel if I was wrong. It felt like a massive disconnect. But presuming competence is not about my ego, my expectations or anything else involving me. Presuming competence is about respecting my daughter and respecting her process. It is about honoring her. It is about giving her what she needs to flourish. It is about dispensing with what I think, believe and have been told. Presuming competence has nothing to do with my fears of success or failure. Presuming competence is not about me at all. It is all about my daughter.
Emma takes the stages with Pascal, Tracy Thresher and Harvey
Emma's Hope Book 
Hi there. I am moving away from picture books and into the next level with Beth, who is 5 and at about a 3 year old expressive level (on a good day). When I asked Beth questions while reading she resisted answering most of the time, so I backed off on the questions and just tried to tell the story. I don’t even read the text exactly…I just tell the story in a way that I think she will understand the plot line (ie I get to the point rather than using extra language) using expressive language. I know I should be asking some questions, but I am not sure where to go with it without making reading negative again.Therefore, I am interested in what you said above, “Often we were asking her to answer questions that were not obvious to the story. When she couldn’t answer, we’d dumb down the reading material and then wonder why she wouldn’t pay attention.” Can you please give me some examples of the types of questions you used to ask and what you ask now that have made the difference? We are using Proloquo now, do you think answering with the device rather than verbal would be better? Thanks.
Answering with a device rather than with spoken language may indeed be easier. (Lots of problems with spoken language can fall under what Ariane helpfully terms “language retrieval issues.”) But also…don’t underestimate her understanding of the story just because she can’t necessarily answer questions about it. Stories that I’ve read, both as a child and adult, can take a very, very long time to ferment into me understanding what they were really about.
I’m also not sure why you wouldn’t read the text exactly. Wouldn’t it be more helpful to do so to help her learn to match spoken sounds to written words? We have strengths for pattern-recognition; it would seem to me to be more confusing than helpful to be trying to pick up language patterns, but being confounded because the patterns of what I was seeing and hearing didn’t match up.
I try to tell the story concretely rather than adding in extra words that are unneeded (I get frustrated by unnecessary language too, her dad and I are engineers ;-). Also, when I read to her before and read the text exactly the same every time, she requested that we read it over and over to memorize it and would get frustrated with any variation. So I try to very it enough for her not to get stuck in just the rhythm and rhyming of the words.. She seems to be responding well to the approach. I make it fun and verbal story-telling like. At the end I recap the plot with the key parts.
Oh please please please do not undermine her desire to memorize the words exactly, or to enjoy the rhythm or rhyming. Those are beautiful, important things. The story is written the way it is because those aspects of the language are important. My ability to memorize when I was a kid was VERY important to me. And lots of more complex skills later on, I learned in acting classes. For which you have to be able to memorize long sequences of EXACT text. Also, scripting language is a skill that we use throughout life. All kinds of things are intertwined here, but desire and ability to memorize language exactly is NOT a bad thing.
Spontaneity and variance and understanding a story for its spirit and not for the language are important, too, but you can do that without punishing her natural aptitude for text-based language, ritualizing, exactitude, and cadence. Those things are strengths; they are not wrong.
Seems like a middle ground should be okay…a rhythm to the story, with some variation. We do music and rhymes all the time too, and it was more prevalent in the children’s board books. Now that we are doing “real stories” they rhymes aren’t that dominant. She seems to be accepting that and getting back into reading with me. Maybe even because of it. Thoughts?
She’s quite possibly more into reading with you with stories that don’t depend so much on rhythm and rhyme because they give you less opportunity to undermine the language–and her understanding of it–for your own convenience. I’m just…if she’s reading, I’m not understanding at all what your stake is in undermining her natural language strengths. That she enjoys one type of story or another or a mix of them isn’t better or worse–they depend on different types of language, and they are written that way for a reason. Like, there are *very high-level* forms of literature that are dependent on reading/memorizing them in the stringent forms of poetry in which they’re written. Just please get it out of your head that that is a bad or less desirable thing. It isn’t. It’s a particular kind of strength. I am begging you to stop trying to make her unravel or confound it. There’s a reason that bards were revered throughout history–it’s a very uncommon gift.
And if she’s shortchanging her natural enjoyment or understanding of a particular type of language to placate you, that is not a good thing.
Introduce her to things you suspect she’d like. She will *probably* wind up liking a broader range of things, without this pressure to not read the way she likes to read.
(Oh, and one type of story isn’t more “real” than another. Rhymed, illustrated children’s stories are real. I have two college degrees, and they still comprise some of my favorite books. Young adult chapter books are real. Adult literature is real.)
Oh! I was writing my response while you were writing this, so I didn’t see either yours or Judy’s until I’d posted mine! So glad I am saying similar things and really appreciate your writing about your own personal experience with stories. Grahamta – I agree with Chavisory, read the story as written, absolutely.
Late to the party, but me, three. 🙂 Square peg and round hole and all of that. If she is correlating what you are saying with the words on the page, then you changing what you are saying is just confusing. She wants it the same way every time because 1) routine is comforting and 2) it’s reinforcing the connections that she is making between the spoken and written word. This is how she is learning.
Answering questions about what has been read is great for school work because it is just that – work. Answering questions is many times difficult when a person has an autism neurology due to all the neurological steps involved that it takes to answer a question. A question often hits me like an unknown surprise so trips the anxiety trigger giving me something extra to deal with besides trying to answer the question being asked. So, please leave the question asking for school. I know I have a lot to learn and will likely never learn enough to please the people around me. Even so, please consider giving me a small break from learning by sometimes simply allowing me to enjoy a story with no questions asked. All in all, having a question asked, is often the perfect way to spoil the magical time of wonderment and possibility that was mine after having a story read. Thank you so much ahead of time for this consideration.
Yes, that too.
The stories that I’ve ultimately understood the best and that have meant the most, generally weren’t the ones that I had people needing me to answer superficial questions about.
Wonderful Judy. As I wrote in reply to Chavisory, I was writing my response as both of you were writing yours. As I wrote below, Em also gets very stressed by being asked questions. (I do too!)
Yes! Have at least one time daily for reading aloud for listening/leisure, without breaking into the text with questions. Hearing the language in a rhythm and cadence is part of learning language and communication at a level which is often higher than individual reading ability. Jim Trelease’s book The Read Aloud Handbook discusses this, including case studies of kids who excelled when parents read aloud voraciously to their kids (some of whom had disabilities).
Proloquo and even a letter board are key for Em. To your point about questions…. say the story is about a boy taking a taxi cab to the airport and it ends with a picture of the airplane taking off. Common reading comprehension questions would be: where is the boy going? How does he get to the airport? Etc.
So often these kinds of questions are asking for things that are not explicitly stated within the story. With the first question, the answer could be anything. My daughter wants to please. She wants to give the “right” answer. Questions actually cause her tremendous anxiety. So these two questions, neither of which have clear answers are going to cause her stress as well as confusion. It isn’t obvious what the correct answer is. “How does he get to the airport” she might understand as what route does he take, so she might answer, “It’s dark! Echo! Echo! Echo!” this answer (while actually correct if she were going to the airport as we almost always take a taxi through the midtown tunnel and when we go through the midtown tunnel it’s dark and we pretend if we shout we will hear an echo) will be consider incorrect at the very least and by many who do not understand the word associations, will be baffling or worse, nonsensical gibberish. “The question of where is he going” is also filled with problems, the answer might be “the airport” but it could also be answered with, “it’s dark, echo! echo!” which again would technically be correct if you understood the word associations being made.
I actually do not ask Em questions while reading to her before bed. It’s a relaxing time, a time to snuggle and I just read. But during one of our typing sessions together I brought up Anne of Green Gables and asked Em to tell me something about the book and Em typed, “Orphan”. So yeah, it’s pretty clear she has a good grasp of what’s going on.
In Syracuse they have a list of steps one should follow when learning to do supported typing. I hope you find it helpful. They call it climbing the ladder and I’ve copied and pasted from this site ~ http://soe.syr.edu/media/documents/2011/2/Rosemary_Crossley_pages_175.pdf
“Figure 3.1. Climbing the ladder: Activities leading to free communication
by spelling.
Self initiated conversation—where the users get their aid or ask for it without any prompt.

Spontaneous conversation—where the topic is chosen by the user.
Wide-ranging conversation—encouragement to use a range of sen- tence structures may still be necessary (e.g., “Now you ask me a question.”) .

Answering questions—”What did you do at the weekend?” or “How did you like the movie?”
Typing sentences in a set context—picture captions, describing pic- tures, speech balloons for cartoons.

Exercises with a limited range of answers—”Give me a word that rhymes with ‘day’,” or “Give me the opposite of ‘big’,” or playing the game “Elephant.”
Completing common sentences or phrases—”Fish and  “Too many cooks spoil
Cloze exercises—”Put the missing word in the sentence, Bob  a car.”
Exercises with set answers known to the receiver—crosswords, general knowledge questions, names of friends or family.
Typing set words—”Spelt ‘horse'”; or labeling household items or pictures.
Copy typing—”The quick brown fox jumps over the lazy dog.”
Replacing missing letters in words—perhaps on the Talking Lesson One or Speak and Spell computer toys.
Word matching—Bingo, Lotto, word association games (group activity only)
Yes/no,true/false,andmultiplechoice—simple quizzes,”Dodogsgo meow?”; “Type C if you want coffee and T if you want tea.”
I guess I should have said this upfront…I am homeschooling her (for K at least). So dual mommy and teaching role. I need to read and digest all the above. Thanks so much for all the advice. Yes, questions clearly cause her anxiety. What about open ended? I say “what do you see?” or “tell me more” and I am shocked what she comes up with and I roll with it. Is this approach any better? I would only do it on a few pages for now and not when she is very tired.
I have just started with Proloquo and using all her highest motivations. We have been exploring with music. She loves music, but did not have the language to ask for specific songs, which lead to tantrums. Oh the things I am learning about what she likes that she never could express to me before (or, put another way, I couldn’t read her signs right).
All of this sounds great! Yes, work with what she loves, music is a wonderful way to engage, interact etc. The site I copied and pasted from in the above comment has a wealth in info, links and great suggestions for supporting typing, but also just for supporting learning, not just typing (!) They also have video clips that I find so wonderfully helpful.
Ariane, still read the story as written given my comments above (about memorization)? Example text from Godilocks: “That same morning, a little girl named Goldilocks went out early to pick flowers for her mother. She walked farther and farther into the woods, until she came upon the neat little house. Hungry and tired, Goldilocks knocked on the door.” Wow, that is really detailed. It even annoys me. Get to the point already! I just boil it down to “a little girl named Goldilocks found the bears’ house. She knocked , they were on their walk, but she went inside anyway.” or something like that. I am presuming competence if I believe she can handling variability, story telling, etc aren’t I? Isn’t that how stories used to be told and isn’t it more of a shared experience that way? I know this is a bit non-standard, but I like to try new things and this seemed to work for her.
But here is my point:
Just because something as written is annoying and long-winded to you, does not mean it is to her. Or that her preference for the words as written is inferior in any way.
Yeah I just thought of that myself while driving her to music class…It not about what I think. But, she does site longer and seems to enjoy it better when I shorten the text. Otherwise she whines and runs away. And I should definitely expand the text to the way it is written over time and not assume what she likes. You are absolutely right and that is a great point.
So to just piggy back on here, in addition to Chavisory’s comment
I have found Em can be distracted by something one day, only to be completely enchanted the next. The days that she’s distracted are days when we just read for a shorter period of time, but I would read the story as written. (The only time I’ve condensed something is a magazine or newspaper article. But stories, no.) I also find having a certain time set aside for reading, (we do this every evening before bed) a time when she knows I am going to read to her and no interaction is needed, is lovely (for both of us)!
Thanks. I said this below, but I want to thank everyone for the great comments and resources. I will be rereading this page for awhile digesting the info. But, in short, you have changed my mind for the better. Thx.
I hope you’ll keep me updated. Would love to hear how things go, what seems to work, what doesn’t, etc.
Now I’m completely confused. Because before, it was you who said that she didn’t like you changing the words but wanted to memorize them exactly and seemed to enjoy the rhythm and rhyming. And I didn’t say anything about expanding the text to read it as written over time. I said that if she enjoys and understands the text as written, then you shouldn’t undermine that.
After reflection, it was like that when she was much younger. And she is more flexible in some ways now. I actually am going to read as written as I said in a later comment. I am going to give it a go. Thx for the input.
Ariane, I am so grateful to you for that post on presuming competence. We were planning home kindergarten for our girl and were being told not to do too much academics. But I read your post and realized you were so right. So we went with a full kindergarten academic program. By the way, we are three weeks in, and she is doing awesome! She is especially good at science and social studies, and grasps concepts easily.
Regarding reading, I absolutely read the words as written, and I presume that she can read them. I have been altering the academic materials to provide lots of visual components, while lessening the dependence on verbal. Whenever there are questions, I change them to provide choice, to provide visuals, to provide opportunities for her to choose an answer or ask a question using question cards and pointing. It would be frustrating to her for me to ask open questions when I know verbal response is so difficult. So for every question, I provide a method of response (sign, point, visual cue, or even an action). We just got an iPad, so now we can take the visual components and choice method to a new level. Once we moved past the whole verbal focus, it opened a whole new world of learning. I will say that revising curriculum isn’t easy and I had years of curriculum development professional experience to guide me, but it is so well worth it.
Any ideas about apps to help her with choosing letters or words for communicating would be appreciated.
And Ariane, thank you so much! There is a little girl doing science and math and the rest because of that post. And now, I watch my girl soar with academic lessons and answering questions. It is wonderful! Okay, off to teach!
**Hugs**
~Desi
Desi! This comment made me so very happy. It is really wonderful to hear that something has positively impacted another person and their child! Wonderful!!
There’s a great spelling app that Em really likes called “spelling zap”. It’s a nice app to just practice. There are some wonderful apps geared for kids from grasshopper. And the typing app “Assistive Chat” is good, though Emma gets distracted by the suggested words that come up and likes to type everything out anyway, even “yes” or “no” she wants to type the whole word and won’t point to either word if it’s written out as a choice.
Questions evoke anxiety. Be creative to get the same information the question is attempting to elicit. Example: The boy is going to _________ instead of Where is the boy going? As an adult with more life experience now I am able to reduce my own anxiety around answering questions by switching the questions into a fill in the blank statement. One student I worked with loved it when I translated questions to fill in the blank and then added after the blank (more than a bazillion correct answers possible). Another strategy I sometime use is to tell students they can write up to three answers and the teacher will circle the answer she likes best. This decreases anxiety and allows the student to learn what sorts of answers are expected by the teacher.
These are all such wonderful suggestions Judy and all are in keeping with the “climbing the ladder” suggestions from Syracuse. Fill ins are fabulous!
I’m really glad you’re pointing this out, Judy, because I think oftentimes teachers and parents don’t realize that the way a question is asked or phrased has a lot to do with the response (or lack thereof). In addition to your great suggestions above, I think it helps to use inclusive language with words like “we” instead of just “you”, because it makes it more of a joint learning experience, and again, less threatening to the student. For example, sometimes after I read aloud out of a textbook I say (almost as if to myself) “So what did we learn from the text just now?” and then I would perhaps offer a couple of possibilities prefaced with: “Did we read that..”? Sometimes offering choices which are said aloud and written can help get kids “unstuck” for answering.
Yeah, we do fill in the blank too. And choices. She is better with that. I was thinking of sticking to that for awhile. But still, only on few pages for now. I am sensitive to her anxiety that way. Thanks Judy. This really helps.
Do questions evoke anxiety due to the way they were taught (school/therapy) or is in inherent to autism?
Questions cause anxiety for all children. I was a former teacher, and even with older kids, there was the anxiety. But there can be added anxiety when a verbal response is being asked for, or if there are too many steps or instructions. But it is not unique for questions to cause difficulty with students. In the classroom, and this was a regular ed high school classroom, there were many times we did “pair sharing” where students decided on an answer with a partner. It gave them time. It can be used with individualized edu as well where you become your child’s partner and provide a way for a response. For example, we might make a choice from visuals on the computer about what happened next and then apply that to her circling a visual choice on paper. So she has the support.
There are really three steps, I think, in teaching any child: modeling, supported practice, and independent practice. It is not linear, however. One day she might do some of it independently and the next need support or even modeling again.
Anyway, it is so wonderful to hear what you all are doing.
**Hugs**
D.
Desi, wonderful comment here! Thank you so much!
Great advice…thanks.
I am terrible in interview situations if I don’t know or necessarily trust the interviewer. If there is any perceived antagonism or if I sense the person doesn’t “like” me, or is in anyway suspicious of me or thinks I don’t know the answer I can go completely blank. This holds true if I think the person is feeling impatient or irritated with me. Total blankness. They could ask me my name and I wouldn’t be able to answer. I had someone once ask me how old I was, but I was so distressed by the vibes I was picking up on, I gave him the wrong age (by FIVE years!) I just couldn’t think. This is most definitely NOT something inherent to autism. This is something that many feel, but the more sensitive you are, the more vibes you pick up on, the worse it can be. I think Autistic people tend to get overwhelmed by stimuli and therefore may be more derailed by questions than those who are non Autistic and also those who are less sensitive to their environment.
I only asked because I wonder what things would have been like without the ABA therapy. She filled in things beautifully. It may have been best to stick with the fill ins and move more gradually…the VB Mapp considers fill in a lower level skill and they move onto questions quite rapidly. My kiddo never responded well to it and seemed stressed with it so we quit, did Floortime, common sense teaching, the iPad. It is going much better, but the reading piece is what I have been trouble getting going. Her attention is very fleeting while reading. But stressing her out is not the way to go, so I will go back to fill ins and maybe choices. This approach makes sense and seems supported by the people weighing in on this post. Also, I will read text as is 😉
Another good resource is Soma Mukhopadhyay. She does incredible work and is worth looking into. She also has a number of videos showing her working with a variety of kids. You can google her or Halo, which is her organization out of Austin, I believe.
Questions cause anxiety for me basically in one of a few ways:
a.) Real-time processing demands. When I could probably work out an answer but not under the combination of scrutiny and time-pressure.
b.) I know the answer, but can’t make it into words, because it’s in pictures or visual logic or metaphor.
c.) I fear that there’s a “trick” in the question somehow–that there’s something other than the answer that the teacher or questioner wants to hear, but I don’t know what that thing is. There’s an answer, but there’s also a “real” right answer, that I’m going to be punished for not giving.
d.) The question is being asked too abstractly, and I can’t even figure out what the concrete substance of the question is.
e.) The language or grammar of the question was ambiguous, giving the question itself multiple possible meanings. I have to figure out which question you’re actually asking before I can give the answer. There’s time-delay and language processing delay involved in all of that.
This is all a combination of inherent to autism, and bad history in the educational system.
What a wonderful insight. Thank you so much. I have removed your details and sent this insight to my son’s teacher. I made sure it was anonymous but thank you so much!
This is VERY helpful. I have been trying something with giant posters (of farm animals, etc). We sit on the couch, I hold it in front of us and it is so interesting to her that she comes up with great ideas. I just try to follow her thoughts and observation, and then add my own thoughts. I feel like she feels that pressure and all the things you are describing above, due to the ABA style which she did not like (answering questions with a time limit and then errorless teaching). I argued with them about providing the answers so quickly…said she needed time to process…but they would not listen. I tried it their way and we made no progress (and now we are slowly dredging our way out of fear of questions). That is why I am being so very careful and trying to get it right for her now. I suspected what you wrote above was true for my daughter, and now I am more confident she is experiencing all the points you made. Thank you.
Anne of Green Gables *clap clap* *happy dance* I love the thought of you reading that with Emma, it’s one of my favorites. A bit of a non sequitor but the thought makes me happy.
Aw… I love your “happy dance”!! That made me smile!! As an aside I just love how Anne so identifies with “kindred souls” with a similar range of imagination!
“Presuming competence is an act, it isn’t just an idea.” Ariane, I really like how you’ve laid down an example (with Emma) of a road map for exploring this “idea’ with concrete actions.
*Laughing* well Pascal, I think you need to take a little credit for my increased understanding of what it means to “presume competence”!
Wonderful post, and interesting and informative comments. I’m sorry to have been out of the loop so far (2 weeks of unexplained fever) but now and better and catching up on all postings I’ve missed. So much. So inspiring.
My greatest gift for Mother’s Day was what an amazing Mother you’ve turned out to be, Ariane! I wish I’d had a mother like you, but at least I have a daughter and a granddaughter to be really proud of.
Does Emma sometimes read these postings? If yes, tell her “I love you, Emma”.
Granma (never too old to learn..)
So glad you’re feeling a little better. We’ve all been worried!
Every now and again Em will say she wants me to read her a post. I will show her your comment. I know it will make her happy!
And I love you, Mom!
Uggg…..I recently did an “oops” with presuming competence. My son is 4 and hasn’t been to school yet. He’ll be going to K4/EC in the fall, so we were doing some “testing” for his IEP. Since he doesn’t really “test” everyone was playing with him and trying to get a handle on how he thinks, etc. The teacher asked me if he could do some matching with associations (like, match a baseball with a bat). I said no, we haven’t worked on that yet, he would just be confused and get frustrated. Oh, I was so wrong. We tried it out at home a few weeks later. He could do it. EASILY. I felt bad that he heard me tell his teacher that he couldn’t do it. It is a good reminder not to underestimate his knowledge.
How is Proloquo working for Emma? Nathan’s school wants to try it with him once he starts. He is “sort of” verbal. Enough to get his point across to people who know him. I knew of the program, but didn’t want to purchase it unless it was actually going to be helpful for him. I’m excited to see how he does with it at school.
Oh Beth, as you know if you’ve read more than a few posts on this blog, the times I’ve done exactly as you describe…
So great that you tried it though and were able to see how easy it was for him!
I love Proloquo2go. We use it just for the typing and the voice. I have not taken full advantage of all the program can do, however.
Good luck and I hope you’ll keep me posted!
It’s hard not to do it sometimes, but I am learning! Love your blog. Reading what you and Emma have accomplished together is so inspiring. I was glad to find a blog written by someone who has a kiddo with autism. Love the “adult” autism blogs, but I have a 4 year old, and sometimes their info is so far removed from where we are now. Nathan is a smart boy, but we do have a big language barrier. I’m hoping that school will be able to try out a few things and find a good fit for him.
Many develop language later. 4 is still very, very young. You are right to investigate everything that may help him though now and not wait. Many find (and I’m one of those people) that when the emphasis on verbal language is removed the child begins to talk more. When we stopped asking Em to speak and offered her other ways to communicate (letter boards, typing) she has begun speaking more. Still her spoken language is not reliable and often she will say something, only to type something completely different. The written word seems to be her first language.
We used pictures (laminated photos not boardmaker or another program) for a while. Then he seemed to want to just use his words, so we backed off on that. We still use the pictures when he is having a challenging time. He seems to be more of an auditory kid versus a visual kid, although visuals do help him with schedules and choices. I totally agree that we put way too much emphasis on verbal language. I personally never pushed it. He always had a few “pop up” words, and then when he turned 3 we did auditory integration therapy. He was incredibly clingy and irritable for 2 months, and then for the two months after that words started coming like crazy! It was about this time that we got the gluten and casein out of his diet (I know….but it really was a benefit for Nathan). I think the combo of the GFCF diet and the AIT opened the floodgates, so to speak.
It’s so cool to hear about how Emma blossomed with FC! I’m hoping that maybe that might be a good thing to try with Nathan in the future. (I don’t think that I’m not presuming competence by thinking that he can’t type at age 4….I wouldn’t expect any 4 year old to be able to do it.)
Okay everyone, thanks for the input. I have decided based on your advice to read words as written, try non-verbal support (her proloquo) and/or fill-ins for the interaction. If she gets whiny we can try a new book, take a break, or pick up where we left off later. I can’t wait to try this new approach based on the input above. Thanks for the advice.
🙂
Grahamta, I’m cheering you on and sending you hugs! I’m guessing your daughter will soar under your guidance!!
My mom sounds just like you three years ago she with the best of intentions tries to do everything for me and assumes I can’t do much by myself. If only all special needs parents were like you more kids would have a fair shake in life.
Aw… Nisha 💛… maybe she will come around? I know the feeling of wanting to do everything for my child. I know the feeling (anguish really) of realizing I was actually making it harder (in the long run) not easier for her.
Ok…read all as written. Why? Maybe for reasons our family is finding out more and more now….what speech people for years would call jargon, now with Emma’s ability to communicate by “talking with her hand”, all really makes absolutely perfect sense. Phrases from books that she has memorized and verbally said in specific situations allow our family conversations to just keep getting better. She may spontaneously say a phrase from a book that is totally in context with a conversation we are having. I think that jargon is a phrase that might be considered irrelivent soon, I hope.
I just love hearing about how Emma is coming into her own more and more, Paige.
Another point to consider in all of this is age. Just a thought, but I think “grahamta” your little one is only five, and so is mine. Please don’t get stressed about reading at this age because it is what is expected. That is a societal expectation and not a realistic developmental one. I spent my earliest childhood in another country, and we didn’t begin to read until 2nd grade; and you know what, we were more developmentally ready at that age (around 7). If children find it difficult to focus on longer reading books or complex sentences, maybe try some easier books with short sentences (leveled readers can be good). Analyzing the art in some of these readers can also be great. Our culture is pushing children to “do” more and more and what would have been considered ahead years ago is suddenly expected, with little ones who are not developmentally there yet being labeled as delayed and needing all this support. It is natural development in many countries to begin academics later. Whenever we reach a point where something is not working, we put it aside for a bit and try it again. Kids grow and change so quickly; what is not interesting or difficult this week, may become easier in a few days or a few weeks. The main thing is not to stress about it; our kids can and will do these things in their time, just like all kids do.
Best to you all.
~D.
This is such a great point! And one I really, really wish more people had reminded me of. Our kids are so young! They have so much time ahead of them!! Yes, relax and know that they will continue to grow and learn and change and progress!!
But SO hard to do! It is hard not to compare our ASD kids with NT kids. It’s pure mommy desperation when they don’t “measure up”. I had to work really hard (and still have to work really hard) to RELAX about how much progress is being made and remember that ASD’s kids learning curve is different than NT’s learning curve. I saw Nathan really being to make progress when I stopped trying to “fix” him and start to relax about his progress accept him for who he is.
It is hard at times, but we have to remember too that it is not about ASD kids and NT kids and differences. It is about all kids having different developmental stages. In many places around the world what we think of as NT and “age appropriate” don’t fit because some of those things are cultural. Sometimes (and I mean only sometimes) we make those differences into more than they are for our kids. I am reminded that a relative obsessed about my girl not using a sippy cup when she still liked her bottle. I kept telling them it was okay; I had never had a sippy cup as a kid. And guess what, she went from her bottle to a real cup when she was ready (turns out she just didn’t like those plastic cups!). But it was a cultural thing about the sippy cup; it wasn’t a real issue. And I think sometimes we make more of an issue about things thinking it has to do with ASD versus NT, when it is just about being a kid. We need to give our kids the room to be just kids and not see everything as related to ASD. Rea
Really interesting reading here. My son completed a reading test at school and had to do retell, comprehension, and accuracy. He apparently paused too long on the retell so ‘failed’ but passed comprehension. Apparently they had to drop his reading level as a result. Now isn’t that the most ridiculous thing you have heard?! Retell is part of comprehension. I don’t take the school test seriously and do our own reader levels at home and I know his comprehension is good and he probably thought the retell questions were completely and utterly daft!
Grahamta, what a great Mum you are to take everyone’s advice on board. I am in the throes of a postgrad in primary teaching and completely agree with the other comments about sticking with the text. Familiarity of a book is a wonderful thing – building up that mental imagery and that relaxing feeling of knowing the words. One thing I have found too, is sometimes you have to hunt for the right books. My son is very visual and we found the most fabulous set of books from Oxford University Press called Project X CODE and Project X and his reading took off. The 3D images were perfect for him.
Struth, thank you so much for this comment. Yes, the things our children are told to do to “prove” their competence is infuriating!
Six months ago my sons only interest in books was ripping them up and/or eating them, now he actually brings me books to ‘read’ to him which is just so cool! 🙂 Picture books; the kind with single words and pictures of objects like trucks and furniture and meals or different colours and he will run off part way through while I am reading to him flapping his arms and jumping up and down, which is due to excitement I think and I believe he is wanting to learn things. He also likes the Gruffalo and other simple stories like that, not sure if he follows the stories, but I think he will at some point. I do the actions “He has purple prickles all over his back” and tickle him up and down his back, “Knobbly knees” and grab his knees etc etc 😀
Aw… the power of the tickle monster! (Em named us that!) My daughter is eleven. Until she was maybe eight, she had little interest in being read to. She liked the same picture books and she did not want anyone to interfere or even look at them with her. So good to hear the progress your son is making in just 6 months!
Love your post and the thread! As you know H is a big fan of proloquo2go, there was just an update that has a greater variety of kid voices. He has been using Proloquo2go for long time, 2008 or 2009, and I was so overwhelmed by it at first. I know I still have a lot to learn, but it definitely gets easier. Of course typing on the keyboard with the right support either relaxed home environment or proper physical support are ideal for expressing spontaneous free thoughts, there are thousands of preprogrammed words to combine, or phrases. We started by asking henry what vocabulary he wanted to input, at the time he really like America’s Next Top Model and Nascar, so he chose the models , drivers, cars, their numbers, funny things the models said, and we put them into different folders. First we had the pictures of a particular model, driver with the text to make it more fun, then he didn’t want the pictures ..but it was fun and he really wanted to talk about them. We did the same thing with family members and cities, fun places. Everytime he does something he finds interesting he makes a folder about it. Within the folder you can have folders and buttons..so when we went to New Hampshire last year, ee made a folder about facts about the state..I still remember population 1.3 million( i may be wrong, but i would bet henry wouldn’t be. Judy, there is something about your keynote in the ASI keynotes folder:) There are so many great ways to use it.Another suggestion I have for every parent is to used closed captioning on everything, it’s an easy way to increase literacy.There are great statistics about the dramatic increase in literacy rates in India after national adoption of cc( they actually refer to it as SLS (same language subtitles) on public media . We use it because of Henry’s hearing impairment and i hate watching anything without it. It should be mandatory in every public place:) UDL baby! Also try and get Bookshare for your children’s textbooks, this is something we just learned about over the last year and H just started using, but it is incredible! must. sleep. now. xoxo
Such wonderful information!! Thank you. I have “investigate all that Proloquo2go can do” on my to do list! XXX
So, here is the update. I found a good beginner series and I am teaching her how to read small words. Then I let her participate in the reading by reading the word I taught her, which appears often in the book. IT WORKED! Also, I am toying with the idea of using Proloquo and turning the tables on asking questions…I will have her as me questions for a change. I tried with with some old ABA flash cards tonight that were collecting dust in my closet. I put “What’s that?” on Proloquo, she would press the button and I would tell her unfamiliar objects on the flashcards. She was highly amused! That was just a trial…trying to figure out how to do something like that with a book. Maybe a book of really strange animals or fish or something. I want her to be wondering what it is and model it for a few times, then the choice is hers. Anyway, we are having fun reading again.
Wonderful!
What a great article. You are so right on here. Consider the alternative – assume they can’t do or learn much, and that is precisely what they will learn. I kinda learned this lesson last year when our nine-year-old autistic son expressed an interest in taking ice skating lessons, of all things. A close family member said, “Why are you even going to bother? He’s just going to fail or quit.” I made a decision at that moment to steer away from defeatism and toward, as you put it, presuming competence. It was the right decision and has informed the right actions. Requires a little more work on everybody’s part, which is probably good.
Aw… that’s wonderful! So glad you did!
This is wonderful and fills me with hope, but there is so little hope for Bella, she is 5 and completely non verbal, no signing and has a severe learning disability. We have tried so many things. I dream of a day she turns to look at me and say ‘Mummy’, but for now I am just her full time carer that is torn to pieces when she self injures or has a complete meltdown. When she is ill I cannot comfort her, she hates to be hugged, when she cry’s I cannot help as I do not understand what is wrong. Bella is so loved and I know deep in her world she knows this, I just wish purely selfishly I could see a glimpse of it.
Oh Samantha, I just wrote a post this morning – https://emmashopebook.com/2013/05/24/giving-hope/ – riffing on my thoughts after reading this comment from you… Please know that I really, really understand what you’re feeling. But there is so much hope, not wishful thinking, real hope based in real possibilities.
Do you know of Soma Mukhopadhyay’s work? She has a center called Halo – http://www.halo-soma.org/main.php?sess_id=2670aa6ff2e1af78cd0f1365e0058489
You can watch some of her session clips here: http://www.halo-soma.org/learning_videos.php?sess_id=2670aa6ff2e1af78cd0f1365e0058489
We have had the good fortune of being able to have Soma work with Emma a few times… it has been incredible. Emma has spelled thoughts we would never have believed possible…
Go to my “resources” page, the first series of resources are blogs and writings by non-speaking Autistic people. Some didn’t start writing until they were in their twenties, others in their late teens… There is SO much hope!
I will watch the clips, unfortunately I think we are a little behind in Britain, we are given a label/diagnosis for our children and then pushed into a certain way, in Bella’s case PECs, which I am sure you have heard of. Bella will occasionally do PEC’s but not to any degree. What interests Belles is music and dancing, at her special school the dance therapy teacher has told us that a light comes on in Bellas eyes when she teaches her dance, she wants her to have more but the government cannot fund it. We will sell anything to give her dance therapy if it makes her feel so happy. I suppose what I am trying to say in a long winded way is that I feel we are still on that bridge. The one you have to cross before you can fully accept everything about your child and the things that have been said to you, and land on the other side and try to not feel so hopeless. Hopelessness is so mournful I hate it, and a world without hope feels void, so I will carry on and put one foot in front of the other and see if I can get over this bridge. Thank you for listening. Sam
Wonderfully stated. So true for all individuals. Dev, our daughter with DS is often “under estimated”. Thank you for your all the work you do to improve the world around you 🙂
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This is the best thing I’ve ever read. Ever. Thank you!