Thursday, April 19, 2012

Every so often it's time to cry again

Maya arrived home the other day with one thing on her mind: the school bus.  She was saying “school bus” with her talker, she pointed to the picture of the bus that hangs in the alphabet hallway (with the letter B), she told me “buh!” several times, and she kept demanding that we sing “wheels on the bus.”  Her method of demanding was very cute--she made sure that she had our attention and then rolled her arms round-and-round, just like in the song.  We sang, she acted it out, the song ended, she was delighted and wanted more.  Good times.

But I didn’t know why she was so suddenly enamored with wheels-on-the-bus, and it nagged at me.  Was she excited to be traveling on the school bus again after her week off?  Were they reading about a bus at school?  Does someone else sing her that song?

It was obvious from the way that she lit up when we started to sing that she was making some connection, and she couldn’t tell me what is was.  So after she went to sleep I emailed her teacher, Laura.  First, I let her know that Maya was newly obsessed with wheels-on-the-bus, and that spinning her arms translates as “let’s sing WOTB!”  Then I asked if they had done anything with that song at school.

I got the reply the next morning (I’m paraphrasing): That’s too funny!  Actually, I sang it to her yesterday at school, and then we all sang it later as a class!

I smiled reading it, understanding how much Maya must have enjoyed acting out the song with her friends, and how excited she was to keep doing it at home with us.   Then I started to cry.

God, how I hate that she can’t talk.

I hate that in order to figure out that they sang wheels-on-the-bus we had to go through a crazy multi-step guessing game: Maya acts out round-and-round, I guess that’s she saying wheels-on-the-bus and start to sing.  She lights up, so I know that I’m right. I sing and she does the motions and she is more delighted than usual, so I take her excitement as a clue that something more is going on.  I email the (luckily cooperative) teacher, who doesn’t mind my guessing games, and wait to hear back to gather more clues.  Finally, I find out that she sang it at school, and now I wait for the rest of the day to go by so that when I see her again I can say, “Maya, I talked to Laura!  She told me that you sing wheels-on-the-bus at school!”  Mystery solved!  High fives all around!  24 hours from start to finish.

Or . . .if she could talk . . . she could say “Wheels on the bus!” and we could sing together and I could say “Did someone sing that today at school?” and she could say “Laura sings wheels on the bus!” and then we could have a snack.  4 minutes, maybe, from start to finish.

I hate that I might be missing other hints that she tries to give me, other things that she wants to share.   I speak for her constantly, making connections and guessing.  When she enthusiastically points out a whale in a book, I say “Oh,  a whale!  That’s like the big whale that we saw at the museum!” . . . but what if she’s pointing at the whale because it’s blue? Or because a boy in her class wore a shirt with a whale on it today?  Or because they’re studying the letter W at school and read a whale book earlier this week?  How can I keep talking for her, when I’m really just taking my best shot at guessing what she’s trying to say?

I hate that it’s so hard for her.  And for us.  And while I love her easy (well, mostly easy) personality and I’m eternally grateful that she doesn’t seem to sense the unfairness of her situation yet, I’m so angry on her behalf.  I resist the urge to get down on my knee and look her in the eyes and say “this isn’t fair to you, you know.  Other kids have it so easy and you have to work so hard and even then sometimes I just don’t understand and it’s not your fault and I can’t do anything to help and I’m sorry.”  I try to be happy that she (mostly) doesn’t care yet because I know that someday she will and that will be another crushing thing.

I hate that for us to communicate there is a multi-modal full body exchange that needs to happen.  I hate that I have to guess.  I hate that I’m probably wrong a fair number of times and I don’t know it.  I hate when she gets angry and cries/whines/yells at us (which happens at least once a day) because we don’t understand and she doesn’t know how to make us understand.   I hate that here I am again, three years into all of this stuff, writing with a crumpled pile of used tissues on the floor next to me. 

Every so often it's time to cry again.

At least now I have three years’ worth of experience behind me . . . enough to know what happens next.  I’ve sang this song before, many times now.  I will cry angry tears and then they will change to sad tears and then I will be numb.  And when the numbness fades I’ll take the energy that’s beneath it and, with new gusto, throw myself into working on communication stuff.  Oral motor exercises and making Maya request things with sounds and working more and more closely with the talker and Speak for Yourself so that it will continue to become increasingly incorporated into the way she initiates communication.  We have a lot of tools and a lot of knowledge and have to keep doing the hard work of making it stick.  There will be productivity and progress until I reach a new breaking point, and then we will start again. 



Postscript: I finished writing this at 2:55pm. At 3:15 Maya came home and we got the mail, and a prototype keyguard for the Speak for Yourself app arrived, which is fantastic and will definitely help with Maya’s communication accuracy via the talker.  At 4:10 I became sure (after a few days of debating) that I’m starting to feel the baby kick.  So, I guess sometimes you get lucky and the time to cry passes more quickly than you would expect. 


11 comments:

Shaunte said...

Dana,

I cried after reading the post today. As mother's we want so much for our children. I respect what you are doing and wish all of you the very best.

Shaunte

Cary said...

I cry sometimes too. And then do pretty much what you do. My Ben, while he can talk, he can't walk (yet) and it all seems so unfair sometimes. Sometimes I take his twin brother to the playground without him, and I often sit on the park bench crying as I wish that things were different.

s.e. said...

especially for kids with undiagnosed delays, things can change. My dd had less than 10 words at 3.5 years of age and was still in diapers until 4. She didn't walk until 25 months, etc. etc. She is now 15 and it looks like her developmental delays are a forever developmental disability. She is still undiagnosed. She can't really read BUT she uses the internet all the time, makes videos, knows how to sew and can talk, she has a huge vocabulary and talks non stop. She has issues controlling her volume and has a lot of sensory processing challenges. I also cry a lot, but even kids with developmental delays and more, continue to make progress even if at their own pace. So, don't give up, your daughter is still very young.

Melissa said...

Dana, while it's been so long since we've talked, I sit here at my kitchen counter with tears streaming down my face. I think it's our motherly duty to cry for them. To cry for the things they (luckily) don't understand are unfair. I found myself clutching Noah this afternoon before his nap and crying because I just know that this world is so unfair I never ever want him to know about it and yet one day he will. Being a mom is brave work and it sounds like you're doing a mighty fine job. I wish the best always.

Meghan said...

Wonderful post. I went through these exact same emotions when my own son was unable to communicate at age 3. Love your blog.

Melissa said...

Hi Dana,
My 4.5 year old SWAN lady has not started talking yet either (but just started walking - YIPPEE!!) and I was so moved by your paragraph about the whale. The constant guessing and wondering if you are getting it right, hoping to make her feel understood, trying to convince yourself that the intention is there, and not get disheartened. I feel the same sadness and frustration sometimes, it's all so hard. It's funny how the little things can tip you. But I think the knowing that they are loved, and interesting and that you are listening is the most important thing.

Your blog posts are so wonderful, I'm sure that your generosity in sharing your thoughts and experiences is helping people all over the world like it has me.

Erica said...

Dana, I can so relate! Have you tried using a Little Step by Step? its a button that you can record messages on and send in to school each day. We do this for Avery and I too am guessing at things she would like to say to her friends in her "morning message"but it is great when she comes home and gets to "tell" me about her day! That might help bridge the gap a bit! Avery just hits the button when I say: tell me about your day!

Dana said...

Thanks for the comments, folks. If I'm going to cry I may as well bring you all down with me :)

Melissa (mom to Noah?) I'm sitting here trying to figure out which Melissa you are, and who I haven't talked to in a while---send me an email (uncommonfeedback@gmail.com) if you see this, because it's making me nuts!

Erica-that's a really interesting idea! I just looked up the Step by Step and don't fully understand it (the way that it says you move from one recorded message to the next) but maybe her teacher could give me more info . . .

Renata said...

The tears come from the determination that's on both sides to not let this beat you. Using Makaton got us through the worst of the communication mishaps, but Dominic (my boy) got to the point where he just gave up and agred to whatever my guess was. I knew he was lying because he wasn't doing his happy leg waggle that he did everytime I got it right. Felt like a real fail when even he was giving up on my futile attempts to work out what he was saying.

We're in a different place now, but I remember those days very well. The communication aid should turn things around immeasurably

anne said...

Thanks for sharing with all of us Dana.

Annie said...

I really want to say first that I don't blame you at all for wanting to cry sometimes. Maya got a bit of a raw deal in some respects.

But I do think you are maybe underrestimating her a bit and also overestimating other kids. Maya is doing a great job of communicating she wants to sing WOTB from what you said. As for her not being able to spontaneously communiate that she sings this at school, I do think you should realize that many kids her age wouldn't be able to verbalize that either.

If you asked them if they sang it at school they would say "yes" (but Maya can indicate assent fairly easily it seems...so maybe you could have asked her if she sang it at school.

And your typically developing kid, its is possible...very possible she wouldn't have volunteer anything else. You might then have to ask "who" sang it. You then might get the answer (but Maya can probably communicate this with her talker (SfY) no? And a typically developing 4 year old might have also given you a "sigh...I don't know... I want a cookie" kind of response.

I don't mean its not harder for Maya then other kids. Clearly it takes more work for her to communicate. But I watched the video of her doing SfY and I am again very impressed by her clear ability to pay attention and respond immediately with little intervention from you. You don't have to repeat the questions or work on getting her to focus (well no more than any kid her age). I think the speed with which she processes questions and responds (what do you want for snack...where's the school bus button) is a testement to a really good mind. The place where Maya clearly got a pretty good "deal."