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Thursday, July 17, 2008

Parenting a Nonverbal Child

Sarai asked me some interesting questions in her comment on my blog, "Understanding Lady Muck". They were such good questions I wanted to answer them with a whole post.

Here is what she asked:

"Your blog makes me think a lot about how difficult it would be to parent when you have a aware but non-verbal child, especially your first child, so you have no point of reference. How much I take for granted, not just the obvious things!!

I do wonder how Ellie's awareness but not able to verbalize influences everything. So she has "typical" (there's that word again) five year old feelings, but not typical ways of being able to express herself. How DOES she express her feelings? Do you have a word board for "happy" "surprised" "angry" "frustrated"? Do you just go by facial expressions, and suggest the name of the feelings for her? Does she use sign language to tell you? Sorry for questions and not suggestions."

These are well timed questions as I have been beefing up my communication skills because of all the work I have been getting. One of the resources I have been using is the Toastmasters International website.

One of the things they stress in their online literature is how important body language is in communication. In some communication theory, the heuristic is that there is the "message" which is the words you actually say. And then there is the meta message which conveys your true intent or tone and that is all done in the body language including the pitch and volume of your voice as well as your posture, facial features, direction the eyes are looking. There is a ton of research on this. Malcolm Gladwell talks about some very, very interesting aspects of this in his book Blink, which I highly recommend.

When I teach executives to be mindful of their meta messages as well as their words I tell them that the meta message accounts for 70% of what we communicate and the words a mere 30%. Anyone who is married knows this intrinsically. You don't even have to hear what your spouse is saying when their body language tells the tale perfectly.

OK - I am actually going to respond to Sarai's comment now that I have shared with you all the things Sarai's comment made me think of.

First I would like to tell you Sarai that you have hit the nail on the head with your remark about Ellie being our first child and having no point of reference. This is sometimes good and sometimes bad. The good is, I don't know any different. Sure I see the differences when I go to the pool and the other moms are chatting away while their 5 year-olds are running around like wild things. But at least that reality is not in my face every day. Ellie is our normal. The bad side is - I worry that, because I have not parented a typically developing child, I don't expect enough of Ellie. I may not push her hard enough. I may be missing things altogether. These thoughts scare me on a regular basis.

You ask how does Ellie express her feelings? That one made me laugh - if you could only meet Ellie (and keeping in mind what I wrote about the message and the meta message) you would have no doubt what she is feeling most of the time - at least on the big things. Ellie is actually really good at getting what she wants across. Her body language is really, really well developed. That said, with the subtler things it's a bit harder for others to read her and when she meets someone new she clams up and takes away all data that might be there when she is feeling safe.

My friend Rick always accuses me of reading Ellie's mind but the truth is I know her cues and she knows I know them. We communicate through a series of looks she gives me along with what would sound like little consonant-less words that have very clear meaning for me when combined with a look and an arm or a whole body lean toward what she wants.

We did use the Mayer-Johnson picture symbols when I first began teaching her the names of emotions. We used the picture symbols along with signs and words spoken and written and exaggerated facial expressions. I would drill her using pictures of babies with different emotions until she had them down. And then when she was having a particular emotion I would say, "Oh look Ellie, that's your happy face!" And I would mimic her happy face and also have her look in the mirror.

Once she learns things we can then move to asking her yes or no questions having her pick our hands (one signing yes and one signing no). Are you sad, yes or no? Are you cold (said signing the word cooooollllldd, yes or no (signing the word yes with the left hand and no with the right hand and bringing both hands very close to her so it's easy for her to chose which one she is, yes cold or no, not cold. Recently she has been able to make a fist and she will do so to sign yes. She loves doing it too - so awesome.

We also use the magnadoodle quite heavily to write down choices for her to pick from. We have three around at all times and often use all in tandem to get to the deeper meaning especially around making more complex choices. For example, she wants a toy but also wants to sing a particular song on that toy with mama or dada and fast or slow. This is a four layer choice sequence which is typical of our day.

That said when she is sitting on my lap we converse using spoken words on my part and some signs because those are harder to do when I am holding her. She will grab my hands meaning she wants to make a choice. Often we just interact like that if the magnadoodle is out of reach or we forget we need it. We joke using musical riffs. Sung notes that were originally part of a toy that became jokes in our exaggeration of them. She sings when she is falling asleep and has recently taken to using her voice to mimic these little musical riffs of 6 to 7 notes. I sing to her too to help her conquer scary things like brushing her teeth or walking in her Pony. Music goes a loooooooong way with Ellie. I have to be part mama, part Pied Piper.

Lately, she is getting really sophisticated in her expressed communications. Now she will pick up the pen of her magnadoodle and want me to write what she is thinking. This is hard because I can only guess. Luckily her school speech therapist is onto this and we are going to start the process of getting Ellie hooked up with some sort of voice output system.

When we are at home, communicating with Ellie is made easier because it's all in context. The context is familiar to the three of us and our conversations revolve around her toys, her day, her meals, games we play, songs we sing, etc. That said, now that Ellie is 5, it is increasingly challenging for us to expand her world in the ways that she would chose on her own without our help. It's an uphill battle in that I am always a step behind where she is. She is the leader here and Dave and I try to keep up.

As you can see, our day with her is very intense in that when she is awake, in order for her to play or do anything we have to facilitate the communication in the ways described above.

Overall Dave and Ellie and I have our unique ways of communicating like any family. Is it any harder than communicating with a child who can talk - probably. With some ingenuity and in the last year high level help from her school Ellie has taken her communication up several notches. As parents our personal mission is to bring the world to her until she can go get it herself. And so it is.

I hope this answers your excellent questions Sarai.

11 comments:

terriblepalsy said...

Moo can talk but talked a bit later than normal - i've had my fair share of "charades" with him trying to work out what he was saying.

What I found totally amazing was the non verbal cues that Sumo was giving far before he even came close to talking. Obviously Moo's situation made me a lot more sensitive to it but babies do communicate from an extremely young age - we just don't know how to listen to them.

Great question but also great answer.

sarai said...

Kathryn, thank you so much for your explanations, they were really amazing.....and Moo's mom, too!

The questions have been brewing in my mind for a while, since a long ago post about "Top 10 advantages to having a child with disabilities" or something like that. One answer you gave was in jest --- that you didn't have to worry about loosing Ellie in a crowd, and your #1 reason (serious)was about the amazing relationship you have with her. A different post mentioned briefly that you did attachment parenting. You made me realize how much of MY parenting time with my five year old I spend disiplining. Until recently, he DID frequently, run away from me in crowds, or in a parking lot, or whatever. I spent a ton of time just keeping him safe, getting him not to hit his sister, pick up his toys, speak respectfully. I think we have a close relationship, but reading your posts makes me wonder how different it would of been if I had focused my parenting on COMMUNICATION instead of disipline. Sometimes it does seem like the way your relationship works is more infant-parent (child has need, parent fills it best he or she can, trying to figure out what child is "saying") and celebrating and working towards milestones, rather than parent constantly trying to direct child's behavior, which sadly at times, has been a large part of MY relationship with my child.

I could *almost* wrap my mind around parenting a child that needs a wheelchair, feeding tube, seizure meds, etc. Both as a nurse, and as a mom who faced a real possibility of something similar before our preterm baby died. But my imagination had not at all wrapped my mind around parenting a child without directing behavior being a central part of the relationship. That is to my shame.

And so today, after work, before I checked your blog, I came home and checked the mail. There was an unasked for parenting magazine in the mailbox. I opened it to a letter written from mom of 3 year old who wanted to know what to do b/c a 5 year old playmate was teaching her child naughty words like "butt". I thought of you briefly as I threw it away. Perhaps you should not read parenting magazines, but write them instead.

Bird said...

Woah. NOt gonna lie. Freaks me out a little to imagine that part of my future. Charlie makes noises, but nothing resembling babbling, so I expect these things will be delayed. That said, he makes it very clear how he feels about what he's eating, what he's playing, and right now he's telling me he wants out of his Rifton chair. Like you, this is my normal and in some ways I find that's an advantage.

I feel I should add:
My husband is very quiet. He and his brother are very similar and communicate in what I liken to code. His mother understood his needs and wants so much that as a child he went through a phase where he stopped talking completely. And for the record, he and his brother were gifted.

therextras said...

Just found this site -

http://www.schuylersmonsterblog.com/

And will recommend also Lon's blog on AT:

http://nolimitstolearning.blogspot.com/

Kathryn said...

Jacqui - your comment reminds me of my friend who had a child with severe disability and was non verbal. When she had her next child that one had a speech delay but not because there was any cognitive disability there but because my friend was so good at getting her cues she did not need to speak!

One of the things we practice at home (when Ellie is not tired and we are in teaching mode ) is being "dumb mama" - we got this idea from Ellie's teacher who is excellent at the non verbal stuff and has to be "dumb teacher" in order to push the kids to use their expressive communication!

Kathryn said...

Sarai - I had a lot of help from Dr. Sears in taking on the parenting approach we did ,as well as the example of my friend who introduced me to the attachment approach and was using it with her kids - who are amazing and are now 7 and 10. So I had proof that it was a good approach.

So don't beat yourself up. If you have a high energy kid your main job is to keep them safe so they make it to adult hood. More communication will help. But I am sure there is a bit of yelling now and then around things like not darting out into traffic or eating the poisoness red berry on the tree ( i did that as a kid) etc.

It's easy to develop the type of relationship that Ellie and I have when you're parenting a kid who could barely move for the first 6 months of life.

But I know what you mean about those parenting mags - I try to read them but never find much help!

Kathryn said...

Bird - you never know what he will achieve. And technology keeps advancing on the assistive device front!

Therextras - thanks for those links - I had been meaning to share Rob's blog but didn't know about the other one! Sometimes I learn allot from Rob but other times I realize his situation is different because Schuyler is cognitively more on track in terms of her emotional maturity and smarts than Ellie is. But he is great at sharing about what they do and it's a great success story too.

BusyLizzyMom said...

The understanding and the dynamics you and Dave have with Ellie is amazing. You can read so much about her needs and thoughts by watching her body and listening to her cues. I see this so much with the families I work for but am still amazed that so many professionals do not see the dynamics and the children's potential. They laugh amoungst each other at parents who tell them their childs wishes or choices and feel that these are only the decsions of the parents. How people do not see in these children's eyes how brilliant they are. I hope Ellie will be able to get some sort of augmentative communication system soon, I would love to hear what she has to say, I am sure she will put you and Dave in your place often.

Kathryn said...

Busylizzymom - you are so right. I hate it when Doctors do that - it shows their arrogance and closemindedness. Foregone conclusions about your kid before you even walk in the door really suck.

I hope Ellie does find a way to "put you and Dave in your place often"! I would really love to know what she has to say about herself, her world, us - whatever she wants to communicate. I know part of me really lives for that day - the day when she can tell me who she is without my help.

therextras said...

I linked this post into my post yesterday.

Barbara

Nelba said...

Good post! Thanks.