I’m impatient. I know this about myself. Impatience serves me to do a great many things. It propels me to take action rather than not. It makes me push harder, try harder. My impatience, which usually begins with tremendous optimism can descend rapidly into disappointment and discouragement. Fortunately I am also fiercely determined and dogged in my reluctance to give up which helps mitigate some of my impatience or maybe it just makes me confused. 😕
However, there are a great many things that are not helped by impatience, things like learning a language, learning to type or learning almost any new skill. These are things that take time, practice and patience. So I have to recognize this and continue despite my impatience. This comes up over and over as I work with my daughter. But in working with her, I’ve also come to recognize something else and that is my expectations. Huge expectations, coupled with impatience can do harm. I see that. I’ve been very aware of how it affects me, but how does it affect Em?
I am learning how to support Em in her communication. For example we will read a story together, such as a book Emma chose recently entitled, Who Pooped in the Park? The story details a family outing where the two kids are upset when they don’t see a great many wild animals on their hike, but learn to identify what animals live in the area by the markings they leave. During our session together I asked Em, “What were some of the animals the family identified? One animal starts with the letter b.” Emma then typed, “There was a bear and ciyoty and a deer.” Other than misspelling coyote, this was a terrific answer and correct. We went on to discuss another name for animal poop, which is scat and that all living things produce “waste” of some kind. After our session was over, Richard asked, “So how did it go?”
“It was fine,” I answered.
“It sounded great!” Richard said with enthusiasm.
“Yeah, I guess,” I replied. And then I had a tiny flicker of realization. I was feeling disappointed in our session. I was hoping for some brilliant, philosophical insight. I was hoping that we would have a conversation that blew my mind and when I realized that, I also realized that my desire, my expectations, my impatience had caused me to not fully take in how terrific our session had been. It also made me see how my response may have felt to Emma. Here she was working hard, doing something that does not come easily and doing it really, really well, yet I had not responded with the kind of unbridled enthusiasm I would have hoped for had our roles been reversed.
During our next session we talked about her birthday, which she is very excited about, and the party and various events we’ve planned for her. I tried hard to be aware of my response to what she was typing. I became increasingly aware of my expectations as they arose and did my best to silently acknowledge them before responding with genuine enthusiasm and appreciation for Em’s work. As a result our session was more fun for both of us. Later when I spoke to a friend about all of this he pointed out that most communication is not wildly brilliant, philosophical or even necessarily enlightening. And of course, he’s right. The majority of our communication with one another is about pretty basic stuff. Learning how to communicate basic things is relevant and important. But my impatience and expectations make me forget that.
I have learned over the years that if I want to change a behavior I need to have awareness that I’m doing whatever it is, I then need to have some degree of acceptance that I’m doing it before I can begin to make little changes to it. Those little changes repeated and added up can, over time, create bigger changes. Admitting aloud I am doing whatever it is can be very helpful as well. Without taking these steps however, I have no hope of changing the way I do something.
There’s a great deal of talk about autism and how our children and autistic adults need to work on a whole range of things, but there isn’t a great deal of conversation in the general population about our own neurological deficiencies. It seems to me that if we are going to continue to have this ongoing discussion of deficits, it’s only fair that we begin to detail our own as well. Now that’s a conversation I look forward to having. And while we’re at it, let’s include the positive aspects of Autistic neurology as well, because a little balance is a good thing!
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Emma's Hope Book 
🙂 Yeah, most communication is pretty entertainingly boring. But perhaps this also means that Emma is getting more comfortable answering those concrete “reading comprehension” questions you’ve been struggling with – and that’s awesome!
Also, for next time you guys read that book, fossil scat is called a “coperlite” – she can add that to her dictionary of silly words for poop. Plus, it just sounds so fancy… Sorry I don’t have a more insightful comment, I’ve been perseverating on the fossil poop thing since the 3rd paragraph.
whoops, I think that is spelled copperlite… sorry for double commenting!
And I love double comments!! And PS I thought of you E. as I was writing about the poop issue as I originally wrote (and said to Em) all living beings poop, which isn’t accurate. As I was considering more accurate wording I thought, E. would know how to best phrase this! Hehe 🙂
well, all things with a one-way digestive tract poop. All living things produce waste products. In most animals, that comes in the form of poop and urea (pee). I think though that you did fine on that… Perhaps “all animals produce poop” would have been better. For plants, the waste product is something we humans desperately need – oxygen!
This is great to know!!
http://en.wikipedia.org/wiki/Copralite
=))). Coolness.
Thanks so much for the link, just showed Em.
Maybe coprolite? I’ve also heard fecalith for petrified scat.
Yes, copralite! Love that…
This was great…it is like you are talking about me. It helped me…the part about accepting, then making small changes. Thank you.
Aw… thanks for commenting. Always good to know I’m not alone… 😀
Maybe I will be out of line here to suggest this thought, but when chatting with her about her birthday and what YOU have planned, remember to ask her what SHE would like to do. I am not saying this to be critical, but this was a hard lesson for me to learn. I/ my husband made all the decsions for her until her communication piece came into play and then we/I had to back-track and remember to ask her what SHE wanted/liked/etc.
Jenn’s ideas were much better than mine…constantly learning and I love it!
~ Kendall
Kendall, I don’t think there’s anything you could say to me that I would take as criticism! Thank you so much for this. YES! And as we are about to have a session now, I will do exactly as you suggest.
I rely on my parent friends like you, who have been doing this far longer than I have, to share your experience with me, so thank you, so much for this. It may seem obvious to others, but I am very much a beginner with all of this. Even if you suggest something I’ve done or am doing, it is so welcomed as it serves to validate and reminds me that we are on the right track!
Echoing appreciation. Indeed, I also find myself being impatient for M’s communication and executive-functioning skills to improve, and I think that’s partly a result of the mindset that some of us were sucked into by the self-styled medical “experts” post-diagnosis, connected to the frenzy of “you must cure your child NOW through all these interventions and therapies and and and and, because OTHERWISE…” — it took me a long time to pull out of that mindset (crediting the neurodiversity community for opening my eyes and my mind), I think there’s still a bit of that in my brain, and I have to remind myself to stay in the present with M and validate her extraordinary efforts (and remarkable successes, for example the acquisition of the kind of “ordinary” communication skills that you describe here, which are also growing for her bit by bit). Thank you again for reminding those of us who are trying to be worthy allies to our neurodiverse kids that we’re not alone in our gradual journey…
Love not being alone in all of this! Thank you for being so encouraging and I love hearing about your daughter’s progress, as well as being reminded that some of these “beliefs” take some time to completely get replaced by other, more healthy ones!
Most conversations are a little boring but typing is hard work. I am glad you understood that Emma was working hard. If she is like me, organizing thoughts and typing them is tiring.
You are a good mom because you learn fast!
I think it is tiring and difficult! Em is teaching me the beauty of being patient, she certainly has been with me!
This is a great one.
A wise friend of mine says Expectations are Disappointments getting ready.
Also beware of thinking increase in social communication = better EF. For me more of a trade off but worth it. I am executive low functioning (bad pun sorry) but life is rich and I can tell the tale.
Love.
You know I had not ever heard that, though I guess it makes sense that people might think one would help the other. Seeing as I’m not always brilliant with EF, I wasn’t looking for it in either of my kids! 🙂
I’ve read your blog for several months and have found so many gems. I’m a SPED bus driver in the Aurora area and you are my first ‘go to’ for inspiration. Some of my students are on the bus for over an hour each way and, communication is… trying. What I want and what I’ll get have such great variance on any given day. Most days I’m just happy to have eye contact but always, there is that expectation and hope for so much more. I’ve had dreams of my non-verbal kids telling me about their weekend.. My only job is to get these kids to school in a calm environment but I can’t help myself in wanting to do more. Thank you for relaying the ‘how’ the ‘why’ and everything in between.
Aw… Jesse, what a great comment to receive. All I can say is that I wish you’d consider moving to New York city and being Emma’s bus driver for the remaining years that she will need one!
What you described about expectations sounds like many parents regarding their children…both on the spectrum and off and many people regarding others and themselves. I try to temper mine, certainly, but I’m not much on the “have no expectations and you’ll never be disappointed”. I think is human nature and, in moderation, healthy and productive to have some expectations. I have found it much easier to allow reasonable expectations and then temper what I think/feel/do when my expectations are not met. I try to find joy, learning, amusement, challenge, humility…something positive in them not being met. Like many things. persistence has made it somewhat of a habit. Another thought provoking post, Ariane. Thanks.
“Have no expectations and you won’t be disappointed” reminds me of that thing parents often say to their kids, “don’t get too excited because it may not happen and then you’ll be sad”. I never understood that. Why not be excited? Those supposed connections have never made much sense to me, as a child and even today!
When you start thinking you’re being too impatient, just make yourself reflect, and look back, on all the amazing progress Em has made the last few years. She’ll get there, you can count on it. And Em *does* communicate – she talks, she types, she’s starting to do FC – she might not do it the same way we do, but she sure as heck gets her message across…and isn’t that what communication is all about?
Just realize how incredibly lucky you both are to have eachother, and you’ll spend the rest of your life facilitating one another just fine! 😉
I read about what Emma does and I am just astonished that you’re not doing cartwheels across your living room. What I would do to have Risa do that….you just have no idea.
So don’t beat yourself up. Don’t obsess on the destination so much. Enjoy the journey she’s taking you on, because it’s one of a kind and beautiful and you’ll never again get to experience this. Sending much love to you both!! xoxo
Thanks for the reminder Angie. It’s true, I will never again get to experience this, it is all so fleeting. XXX
You sound just like me I’m very impatient and I have high expectations i recently learned how to take off an put on a t-shirt but i found myself being disappointed that i couldn’t yet take off my pants. You’re right the general population also has stuff they need to work on.
Nisha, we’ve been traveling so I only just saw this. Thank you for this comment. I can only imagine how disappointing that is, but congratulations on learning how to put on and take off a t-shirt! That’s huge!
When I am overstimulated, be it from good or bad stimuli, I shut down. I can get dull, and have nothing to offer but the basics. Doc (my husband for those who don’t know) will naturally feel he needs to excite, encourage, or stimulate me into being my normally chipper self. He has the best intentions of wanting to coax the best out of me. It makes me feel bad, because I feel I disappoint him. That only makes it worse for me, and the added stimuli, no matter how loving or fun, is not a help at all. I need at times to just “be”. Only then can I find my way back to connecting. I think this is one of the hardest things for non autistic people to understand. Emma may be very different, but, with the holidays, travel, and added birthday planning, I would be very much giving short answers, or not desirous of comunicating much at all, if I were her.
Yes, perhaps patience is most called for, so she can shine at her own time…and she will. ❤❤❤❤❤
I really appreciated reading this. When I’m tired and overwhelmed I need quiet and feel very fragile, anything said to me, I can take the wrong way and I often get hurt feelings. But when Emma gets overwhelmed and exhausted she perseverates over things that concern her. She will repeat the same sentence over and over and will begin to cry. If she hits that point of no return she will likely hurt herself or just begin to scream. I have learned that speaking to her in a very loving, soft and gentle voice while showing tremendous concern is by far the best way to deal with her upset. I can even remind her that we are going home now and will take a taxi and the route we will likely take and when we get home we will have something good to eat and then read stories before going to sleep. This will often calm her enough that she can get her mind out of the rut of increased anxiety and upset. While I’ve been trying to practice calm when she gets like this I hadn’t taken into account the sensory aspect, which I think, after reading your comment, is certainly a part of all of this. Now I am thinking dim lights, soft muted sound if possible and lots of soothing visuals as well may help. And patience with lots of love and compassion always help! XXX
Thank you, Ariane! Yes, when younger, i would act out more, but have, thank goodness, mellowed and matured:) However, it is never not a challenge to handle the sensory onslot of the world. I know it can look like anxiety, but the anxiety comes from what I my senses struggle to take in and decifer. I often desperately focus on one thing (perseverate) in order to find something to control my focus. The best description of how it feels when overstimulated is being a cat caught in a washing machine (one that is on!) It is not anxiety which causes this. It is the sensory attack that causes the anxiety and then shut down, or, when younger, the more demonstrative manifestations. You are so wonderful to handle this in a calm and loving way for Emma. For me, quiet, calm, and loving guidance is the safe port in the storm. (and thanks for the cute turtle!)
Chou Chou, is it okay to ask you, (and we can take this off line too) when you perseverate on something is it something soothing or can it sometimes be something that will further your upset? Emma does something that I do, though I do this rarely (Richard calls it “spiraling out”) where it’s like my mind goes to something I find very upsetting and then I’ll go over and over it in my head until something pushes me out and then I’ll latch onto another thing that is very upsetting. Emma did this yesterday as we were coming home from our holiday travels. I knew she was very tired and just overwhelmed with it all. She kept repeating two things that upset her and couldn’t get past them. Finally I did exactly as I wrote in the last reply – I told her it was going to be okay, that we were landing in New York and would get off the plane and get our bags, then get a taxi and go through the midtown tunnel and once home we’d unpack and have something to eat and then read stories and go to bed. That seemed to calm her enough to stop the repetition of worrying thought. But it’s almost like the perseverative thoughts add to the overwhelm and not lessen it. Which is also what it seems with the self-injurious behavior, it’s a way of controlling the overwhelm by creating a different kind… does that sound familiar? Not sure this is what she’s doing or going through, just thoughts as a witness…
Oh, poor Emma! Traveling can be so hard.
Do you remember those toddler toys that are a small wooden bench with holes and different colored pegs? You would hammer them down with a little mallet, then turn it over and hammer it again. Sometimes one would be harder to hammer down, and you would have to repeatedly work at it. When I am under attack by too many things, it is chaotic, and I am in deperate need of sensory order, which can be compared to pounding the pegs until all are level. Then there is that one peg I can’t hammer down. I must keep at it in order to create the level order I need. If I am still in an tired, overloaded situation, so many things are making me feel bad, but I will focus on one more than others. Even if the situation has been resolved, I have not processed it enough yet. It is only logical to hammer that peg while I am busy hammering other (harmful outside stimulation). I don’t need to do this when I am not hammering pegs, but, while I’m in hammering mode, I will focus on that hard one, even though it is very upsetting. I just know things can’t be level unless I do! It is not soothing. It is working hard at finding order. By giving Emma a mental vision of a level, familiar, non-scary near future, she can focus on that, instead of hammering that hard peg. At least, if she is anything like me. Sort of a light at the end of a tunnel.
Self injury is complicated and different. When I was little, language and speech were hard, and I would bite my wrist partly in frustration, and mostly as a means of stimulation, a way to make myself more alert, in hopes that I could understand what was being said, or could figure out a better way to communicate myself. This ended once my communication skills got to a certain level. Head hitting/banging lasted much longer, and was directly related to sensory overload. It hurts. Everything inside and outside hurts, and, if there is no escape, well, there is no other way to put it: I feel like an entity trapped in a physical body, in a physical world, and both are attacking me. After a certain point, the head banging was a kind of ” cold slap in the face”, a release, to stop the physical hysteria, and snap me back into the more physical world, in hope that I could handle it.
When I travel, noise cancelling headphones help a lot, and doing mental rehearsals of what is going to happen. I find the app Miracle Modus (on the spiral setting, with the sound off) very helpful on my iPad when in overstimulating situations. “Safe hugs”, being squeezed long and hard by Doc, around my upper arms and back are amazing, and pressing my forehead against his and rolling it back and forth can get me through for a bit longer. The worst is any criticism when I am trying so hard! That will just have to wait. Being overloaded is hard work. the hardest thing I know…and that’s saying a lot for anyone who has given birth! The most baffling thing to me is learning that the strongest, most challenging experience in my life is not felt by most people, nor can many even imagine it. To them, it looks like anxiety. Amazing! Absolutely amazing. 🐢
Oh! I just thought of something and smiled…It was not the hare who won the race. It was the tortiose. (now where is the turtle emojicon?)
Here it is!! 🐢 😀
Impatience and high expectations; you were certainly singing my song and I want to begin by thanking you for being honest enough to highlight these traits.
You also pointed mentioned how most communication is not wildly brilliant, philosophical or necessarily enlightening. This was sparked by your mindfulness regarding your conversation with Emma, but you elaborated that this is true in general.
This is something that I find myself constantly battling with, in business environments! In fact I have only just realized that my job/vocation/business doesn’t have to be a constant source of profound insight and intellectual discourse – sometimes I just need to feed the parking meter, without writing a thesis about it.
I liked you observation of the relative lack of discussion of the shortcomings in the Neurotypical population, with a wry smile as I acknowledge that the shortcomings that I share with them may be as many or more than my Autistic differences…
I just love your writing and comments… always… if anyone could write a thoroughly enjoyable thesis on the intricacies of feeding a parking meter it would be you, of that I have no doubt!
I seriously wish we humans could spend our time and energy coming together on issues rather than finding ways to attack and differentiate.
Ariane, you and Emma are doing great together. Even the simple is profound. To see how far you have come, just take a look back. Since you are a blogger, you can probably look at past posts and recall past communication episodes with Emma. I am sure you will see improvement. Is anyone videotaping any of your sessions? When I look at new and old videos of Kim and me, I am not only encouraged by how far we’ve come, but also see ways she was/is communicating that I didn’t see at the time because I was beside her and not in front watching what she was doing. For example, while typing Kim might have a quirky smile on her face that relates to what she was typing, or she might be nodding or shaking her head, and because I was so busy just watching what she was typing I never noticed the other communicating going on.
Oh Marilyn such a good reminder to videotape. Thank you for this. And thank you also for the reminder that so often we are too close to see everything. Yes. Yes.
SO glad to have stumbled over your blog! My son is on the spectrum as well – he’s almost 11 – and he “does” speech increasingly well (singing is his favorite medium) – but we find that his ability to comprehend concept or abstract words is his primary hangup. I’ve searched to no avail so far for an app or any type of program that would aid this…
Other than that, thank you for your words – and for expressing some of the things we also think about…I look forward to reading the rest of your posts!
Thanks so much for reaching out. Tell me specifically what kind of App you’re looking for. Others may have ideas that could be helpful. 🙂
Well, we saw that there is a new one that converts text to speech – it would be great to have writing to speech or text – but mostly comprehension is what he struggles with. Abstract words – his staff has said they think he might also have ADD, but what I notice is that he tends to muddle up sounds and words, so I wonder if it might not be more like auditory discrimination. That, I think we could try to handle – I guess there’s a program for it in southern CT – but helping him “get” the finer points of language is a big concern for us.
There are a number of apps that will announce the letter being typed and then the word and finally the entire sentence, but this isn’t helpful in comprehension. However, (I am a parent and NOT a in any way an expert regarding teaching, language acquisition, etc.) I was very concerned about Em’s comprehension for a long time. What I came to realize was she understands far more than I gave her credit for, it was her inability to make what she knew known that was the continuing problem. We’ve been working on supporting her typing and find that what she cannot say, or resists saying, she will often type. Yesterday we had a terrific session discussing a book that she brought over (upon my prompting) to talk about. When I asked her about what she would do if she were in a field with one of the cows featured in the story, she typed, “I would go to the cow and milk it.” Which was both hilarious and completely in keeping with the story. Was she comprehending? Oh yes and so much more! I’ve heard similar stories over and over again from others who’ve experienced the same with their child.
😀
He hasn’t shown a ton of interest in typing (except to find videos on youtube), so I wonder how to get across to him that he could communicate with us like that…
This is the app I heard about – it’s a boy in our state who made it:
http://www.courant.com/community/west-hartford/hc-west-hartford-handyspeech-1231-20121227,0,6297988.story
http://mybeautifulpuzzle.wordpress.com/2013/01/08/my-beautiful-puzzle-a-poem/ I just wanted to share this poem I wrote with you. I wrote it this morning as I myself was feeling impatient with my son’s progress. It feels so one step forward, two steps back lately. I hope you get time to visit my blog and read it. I love reading yours. It’s very strong. Hugs, Amanda
Hi Amanda, I have visited your blog. Thank you so much for reaching out! Your boy is so adorable!!
Oh thank you Ariane. He’s a pretty fabulous little guy. I just wanted to share the poem and thought of you. Have a great week!
I loved your poem! Thank you so much. Really, really appreciate it! ❤
Reblogged this on DAILY BUSINESS JOURNAL.
And because I’m all “hey, shiny” over here, all I can think about is, “there’s a book called Poop in the Park?!!!! I must buy that for my child!”
Ha! Here’s the link for purchasing – http://www.amazon.com/Who-Pooped-Park-Yellowstone-National/dp/1560372737
It’s a great book! And now because of E. and others I know there is also copralite which is fossilized dinasaur poop. How cool is that? 😀