Dear Ibby,
First of all, I'd like to say I am a big fan of your work and
you first came to my attention when the Thinking Person's Guide to Autism
published your essay "A Person is Not a Function."
I have an almost 4 year-old little boy on the spectrum. He was
officially diagnosed a little over a year ago. He has a consistent vocabulary
of about 8 to 10 words and seems to be really learning a lot at school and
enjoying himself. It's very clear he understands a lot of what is going on. We
have our bumpy days, (as does everybody), but overall life is very good.
I'm actually writing b/c I need advice for how to handle some
neurotypical people in our life. I feel like most family members (on both sides
of the family) are very fixated on the "talking thing.' I hear a lot of
"is he talking more?" "When will he start talking more?"
Every time I share one of his successes at school or home I hear "Does
this mean he'll talk more?"
I don't want to make it seem like I'm anti-talking or that I've
completely ruled it out for my son's future, but I've broadened my ideas of
communication so that I don't see lack of talking as lack of success. How can I
get our family on that same page? I feel like they still have a lot of pity and
fear feelings around disabilities/differences that they need to work through.
I've tried leading this conversation gently "You might like
this book" "You might like this documentary" "He might
never grow up to be a talker and if he doesn't that's okay." Nothing
really seems to sink in for long. They slip back into "talking is the
default way to communicate/be" very quickly.
They are all long distance and don't get to see the day to day
triumphs and progress. Do I give them more time to process because they are
more removed? Do I keep on the gentle path? They (usually) don't talk about
this stuff in front of my son, but every time they talk this way it hurts me
(even though I realize this is not about me) and leaves me with the feeling
they can't fully accept him b/c they are holding out for something
"better." Do I just flat out start telling them that this is hurtful?
I'm usually someone who tries to avoid confrontation, but I'm
starting to feel that it might have to be done.
You always seem to deal with everyone and their questions with
such wisdom and compassion. Any advice in this situation?
Thanks for everything you do,
Just call me
"Dealing with Family Matters"
Dear Dealing with Family
Matters,
(This took me ages and
ages to answer, not least because I could fully answer one layer but not the
other, or not to my satisfaction. Now I have been to Syracuse and can answer
better along both axes. Thank you so much for your patience, DWFM!)
Thank you so much for
writing, and for trusting me with this problem.
I have been thinking about it for ages, and it is a very real problem. I will speak directly to you, and I also
believe you have many unseen friends out there experiencing almost exactly the
same thing, who will relate to you.
Maybe they will answer this post and you can become friends. Support of people who know first-hand what
you’re talking about is a wonderful thing.
I speak to you all, really.
What I will do is speak
from my brain and experiences and observations and also from my heart, and
start with the adage my wise friend Souci taught me when I was a whelp: “Take
what you need, and leave the rest.”
The first thing I want
to say is that I was flapping when your focus of sight was about how often they
mostly did not do this in front of your son, showing both that you are thinking
that if they did, he would notice and care (instead of being incompetent) and
also that you think his welfare is utmost, because you are an awesome parent. And you are trying to be gentle with your
family and give them the benefit of the doubt.
That’s actually a really good thing too.
I’ll say more.
When you say it is not
about you, I want to say it does get to be about you, sometimes, because you
are a person and you are hurting. That
is reason enough, but there is more.
So. This: you are clearly not the
kind of person that makes everything be all about you as a general
characteristic, which buys you more it-gets-to-be-about-you-for-a-change-now. For one thing, none of the text in your
letter was lengthy declarative proclamations on the topic of what a giving
giver you are, always giving, never a thought for yourself (a specific type of
language use which I have noticed in my travels seems almost invariably to be a
kind of code, a type of opposite-speak bafflingly concomitant with self-involved
action sequences).
Sometimes people like
you who actually are giving people who think of others first need to hear a
logical reordering argument in order to believe that it is OK to defend their
own selves from hurt. I will use a quick
argument from analogy in the form of a potentially random sounding metaphor. I trust you will see what I am doing right
away, so I will keep it short and not belabor it. Here goes:
When people hurt my
mother, especially relatives, I always notice (even though she is fabulous at
hiding it, according to the rest of the world) and feel it keenly, and am
greatly distressed. The less I can do
about it, the worse I feel.
There. I believe we have incontrovertibly
established that it is OK for you to deal with the issue even though you are
the primary person being hurt by their words at this time. :)
(And I stopped writing
here for a long while, because I knew I could only really answer half the
question, and now I will continue…)
There are two axes of
what to do. One is internal and one is external. The external I learned more
about at Syracuse ICI Summer Institute (where I think everyone should go) (and I don't think you have to wait 'til summer to check them out) and hence can now finish this post.
Internally, I can only
hope this information helps you to gird your loins, and it is this. All the
people are brainwashed into believing that talking is the only kind of
communication that counts. This is particularly true in the relatively recent
times, when ABA and ABA derivative peddlers made sure everyone heard that they
and what they sell are the only “research-based” thing on the planet that could
ever help anyone have a life, and the only kind of life was a life of
yimmer-yammer, and it was patently impossible to learn to yimmer-yammer if one
did not do so prior to the age of five, at which time one turned into a
pumpkin, because one’s parents were
woefully-scientifically-ignorant-read-negligent, and you know, since it takes a
village, any parent allowed to be that ignorant in this the famous information
age must have really ignorant and callous friends and relations.
 |
| Tracy Thresher and Larry Bissonnette stand on either side of a giant green sign that reads: "Not being able to speak is not the same as not having anything to say - Rosemary Crossley." |
A great deal of time and
money as well as academic and political power and savvy were spent trying to
make sure this would become engrained in our public imagination as “a well
known fact.” I think the reader will
recognize that all that stuff about ABA and the age of 5 and so forth doesn’t even sound funny or
woo. It sounds true, and fitting, kind
of like we ought to brush our teeth.
It is not, in reality,
true in the same way that it is true we ought to brush our teeth. It is true in
a way much more analogous to the way in which it is true that we ought to own
an imitation paramilitary SUV in order to be more safe on the roads. (In other words, not true.)
Your family more than
likely does not mean to hurt you when it parrots back to you advertising about
how those imitation paramilitary SUVs are really safer for your kids, because that little foreign econo-job
you are driving would squash like a bug they just know it. A lot of thought and
money went into making sure they would believe what they believe, or believe
they know what they believe they know. And also your little econo-job is much safer,
PS; you checked when you bought it. But that will never be allowed to be the
first few hits on their Google search, or Google goes under.
What I think your family
actually means to do, most of the time, with this, is show caring. They are
saying something like this: I care, and I want to show that I care by showing
that I Googled stuff, because in my imagination you will notice that means I
was thinking of you. However, I did not think this through and realize that
because it is your life and the life of your own child, you probably have much
more in depth and relevant knowledge; and maybe a more fitting and useful concept of a way
for me to show caring would be to listen, or give you cake and tea. Tea!
Now: before I get on to
the second part about their actual education, I want to talk about what to do
about this part, which is what to do about how they are hurting your feelings.
It depends on your
personal style, and what you feel comfortable doing and saying, and what you
know of them and who they are. Just one thing before I start saying this stuff. I noticed you think of all of this as a confrontation, and it might help you if you reorganize it in your head as another thing which is not confrontation but rather the offering of information, because that is also really real: you are giving information to people, and that is not a thing which is a bad thing. It is a doable thing, a helpful thing, and useful. OK.
One thing you could do
would be to really tell them what you told me. It hurts. It hurts you. You
could stop it there, as a separate issue from the educational issue, because if
you imagine that your family does not want to hurt you or your child, you can
say this. You can imagine that they do not know they hurt you and would want to
know so that they can stop. Explain your feelings to them and let them be there
for you in ways they cannot if they do not know it’s needed.
Another thing you can do
if it is not in your family culture to talk about hurt feelings and you don’t
want to do the educational features right now is cut if off at the knees. You can say a thing like, that is all, I no
longer wish to discuss anything having to do with language, there will be no
linguistic discussion in my house.
(Sometimes this makes people say, But why? And you might then develop a
situation where you go back to the first thing…so it might be an opening to an
new epoch of family culture on emo-speak…)
A third thing you could
do is launch straight into educational mode, not gently, as you have said that
does not work, but as Captain Super Professor! Able To Assist The Misguided At
A Moment’s Notice! The Minute They Accidentally Utter Some Ignorant Thing! This can be kind of empowering and may tend
to put you in a good mood. It is kind of
my lifestyle. I mean I am a little bit gentle in that I am in a good mood most
of the time, but I am not, you know, difficult to read or understand. I do not
say, you might like this movie some day, I say: This! Movie! Here! ‘Tis The One
For You Now! (pressing an actual copy of Wretches and Jabberers into your hand)….
Which does bring me to
education.
That is the second prong
and the one I didn’t feel adequate to answer about until I got back from
Syracuse having met a wide variety of more people than I already knew, who live
good, successful lives without talking, or talking much. So I will list now a
bunch of people I know in case you
want to go the Totally Educational route.
Which I hope you do. And I
realize I don’t have to write as much about that as I had thought, because they
have done so. (And you can show them everything I have to say about Eric, who
doesn’t bother talking or writing much but can save my life in the sea, and
lives exactly as he likes.) There is no problem about my inadequacy as a non-speaker because the non-speakers I know can speak volumes about it! Volumes and DVDs, youtube clips and blogs and more!
Please write back and
let me know how everything goes.
Love,
Ib
OK so the List starts here just with some people who have produced media and I personally know:
Amy Sequenzia
DJ Savarese
Jamie Burke
Sue Rubin
Jenn Seybert
Mark Utter
Tracy Thresher
Larry Bissonette
Peyton Goddard
These people hardly talk if at all. Many more of us move in and out of talking, like for example sometimes talking a lot and sometimes not at all. Let me know if you want the list of us and where we talk (or...something analogous) about that!
PS Also, other readers please help with this,
please list other resources you know to help educate DWFM's family.
Since that's just who I personally know, I know other people I know and don't know must know other people I don't know yet. Such as Barb Rentenbach, I don't know her yet and she has a great book I'm hearing now! Thanks!
PPS And here's Ariane's resources that she shared below, in a proper link. Thanks Ariane!
