Wednesday, April 17, 2013

Thought: What's in a Name?

This week, I read a Signing Time story, written by a woman who was the mother of a son with autism. Her son sounded a lot like Anthony, never much of a talker, everyone said it was because he was so physically sound, such a boy, first born, blah blah blah, etc.  So she had him diagnosed with autism when he was around three and then they started using Signing Time and then he got good at it and then he signed MOMMY and then, finally, her little boy was BACK.  I shared it on Facebook and said that while I love Signing Time and that it's been great for not just Anthony but all the kids, I don't like the myth pervaded around the internet and the world that somehow because your child is not talking to you, indeed not communicating well with you, that he is somehow LOST or GONE.  I feel it is a) not true and b) hurtful to all children who don't communicate well - if you think your child is not there and has to come back because they are not communicating with you, I fear that other people will think that MY son isn't there, and if he isn't there, where is he?  and also c) some kids of parents are really gone and I think it's disingenuous and cruel to act like your child is gone when they are, in fact, RIGHT THERE.  It's up to me, as Anthony's mother and advocate, to figure out a way to communicate with him and to teach him a way to communicate with me.

That teaching takes all kinds of forms - Anthony is working with PECS, he is a ROCK STAR with PECS, to quote his speech and ABA therapists, and before long I have no doubt that he will be using some kind of communication device to use to talk to us.  Sometimes we have to ignore him to teach him what bad communication is.  He is driving us BONKERS with this pulling on us, it is annoying in the immediate way because he is tearing our clothes, breaking my favorite necklace, etc.  But it's also annoying and scary in a less immediate way because of course it worries us.  Anyway, when Anthony has a tantrum or pulls on us or something, we have to ignore him so that he doesn't think that THAT is the way to communicate with us.  It's hard to keep up with and it can be hard to ignore because he is pulling on our clothes and scaring us about our future.  But we persist, and it's getting better, so that's good.

One thing this woman said in her Signing Time story, and something else I see a LOT in Autism circles, is that she wanted her son to call her Mommy.  He had never called her Mommy, she said and then finally he learned how to sign Mommy and he signed it and it was just great, just amazing, how he called her Mommy.  This morning I was taking Maria and Veronica to school and Felicity was sitting in her car seat behind me, kind of moaning, "Mommy.  Mooooommmmmmmyyyyy.  MOOOOOOMMMMMMMMMMYYYYYY!" and I was thinking, ugh, why did I ever want someone to call me Mommy?  No one ever uses it in the sweet way that I imagine they would.  It's always accusatory - Mommy!  Where are my shoes?  MOMMY!  I want a chocolate waffle!  MOMMY!  You forgot to (insert transgression here)!".  I was thinking about this woman who wanted to be called Mommy so badly, and I was thinking of how often I have thought that too, if he could only say Mommy.  If he could only say I love you.

But I think it's folly - I am his mother, he knows it and I know it.  I know he loves me.  He knows I love him, because I say it all the time.  I say I love you, and I'll take care of you, and I'm proud of you, I say everything to him, because I can.  But he can't.  And I was thinking, it's not so much that we want these kids to say Mommy, to say I love you, because we know it.  What we want when we moan about our kids saying Mommy is not so much that we want them to say Mommy, but we want them to be the kind of children who CAN say Mommy.  Anthony can't say Mommy, not easily.  He certainly doesn't seem to be able to call me, to call "Mommy?" if I'm not there, he never could.  I wish SO MUCH that he could do it, even just logistically it would make our lives easier if he had to go to the bathroom and could call me.  Or if he was scared in the night and needed me, and he could say "Mommy!  I am scared and I need you!", that would be great.  But he can't, not right now.  And I just feel like to constantly be going on and on about it is kind of wishing away who he is and I can't do that.  I always think about that book that I read about bright children who talk late, The Einstein Syndrome.  In it, the author says that this little girl who spoke late's first words were "I'm sorry" because for years all she had heard was her parents begging her to talk.  I read that years ago and I swore then that I wouldn't do that, that I wouldn't make Anthony feel bad by asking him to do something he can't do.  It's a tricky proposition, because of course we want Anthony to work hard so that he can learn to communicate and to live in the world, but to want him to use all that energy to say Mommy?  Not, like, ROSEBUD or something, but just Mommy?  When I know and he knows that I'm his mother?  That is some sort of poppycock that I'm not willing to worry about.


Bonnie@TheFragileXFiles said...

I agree that it's not right to think that you don't even "have" your son, if he can't talk to you, but my problem is I'm extremely verbal. I majored in speech communication, for crying out loud.... and my two boys are unable to express complex thoughts. I don't know if they are even capable of complex thoughts. I get a lot of one word requests, and I get mimicked constantly. But I'm not Nell. I don't have the patience or even the ability to figure out how to communicate effectively without language. (I haven't even seen Nell, so I don't know if that's a good comparison, but you get the idea.) I don't know. Even with all that said, I know that they know I love them, even though I get frustrated with them. And I know they love me. They are great cuddlers (which I guess is a form of communication) and they definitely respond differently to me than they do other people. Just like any toddler would do to their mom, I guess. Now I'm rambling. This post just struck a nerve in me somehow, I guess, because I am frustrated that they can't talk much, and I am frustrated with the rough, physical type of communication they use, and I think it's just me and something I need to deal with. Why God gave two almost nonverbal children to someone who is so stupidly verbal as myself is a mystery.

Anyway I think if you and I ever found ourselves in the same city, we'd meet for coffee or wine, and we wouldn't run out of things to talk about for about 3 weeks.

Joanne said...

Oh, Bonnie, I am the same way! I never, ever shut up and when it was just the two of us here, when Maria was a baby, I thought I'd go insane with just me and my thoughts, narrating my day like I was on some kind of crazy ass cooking show that would never end. I used to be frustrated all the time that Anthony didn't talk too much but I am hopeful that with PECS and maybe an AAC he can someday do it. Also, Maria never, ever shuts up and even Veronica can go crazy with the talking, and Anthony is gone to school all day during the week. He is a vocal stimmer, kind of yodeling away, and he loves to pull up his shirt and pull up my shirt and rub his belly on my back. As he gets bigger, I really hope that he finds SOME other way to communicate because a) sometimes he hurts me and b) it's just going to get weird once he's a teen. I hope we do find each other in the same city some day and we can drive some poor waitress crazy, sitting and talking in her section all night! It's SO funny to me that you mentioned Nell - I always feel like Nell when I try to go out into the public after being home all day with these loons. Like I think I'm talking in words but people just here nonsense noise. Now I'M rambling! :)