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Monday, July 8, 2013

Summertime School and not "using your words"

I've always disliked the phrase that people often say to kids "Use your words!"  I know the intent---to remind kids that when they are angry, they need to express verbally what's bothering them---but long before I had Janey, I felt that it was a kind of accusatory way to talk to kids.  When they are upset, it might not be possible for even the most verbal kid to think of how to phrase what is upsetting them, and I think a kinder approach would just be to hug them or be sympathetic.  But now, with Janey, I hate the phrase, because Janey CAN'T use her words.  And it's not because she doesn't have any words.  She has lots of words, but she can't use them, mostly.  She can recite them, she can plug them into set phrases, but she can't use them, almost ever, to tell me what's wrong or why she is sad.

That's a big part of why things like summer school are so nervewracking for me.  Janey started summertime school today (officially, it's Extended School Year, or ESY, but for Janey, I call it summertime school).  I did better than other years.  I didn't lie awake for hours last night worrying about today.  I know enough people that will be there to know at least someone will have an eye on her, and I was thrilled today to find Mr. Ken, Janey's ABA specialist, waiting there for us.  That made it like handing her off to a dear friend.  I didn't know her teacher, but met her today, after no-one knowing who she was for a good long time.  Everyone meets outside, and it's about how you'd picture a very lot of autistic kids being placed into the classes on the lists.  A lot of the kids are not eager to say their names, or can't.  But I was impressed at how relatively calm everything felt.  I left without extreme nervousness.  I know Ken will tell me how it went, honestly, and I know that the other 5 or 6 people I saw there today that know Janey (some of which I don't know, they just know Janey from other years) will be seeing how she's doing.  But Janey can't tell me how she felt about school.  If something scared her, big or little, she won't tell me.  Maybe there are noises in the school she doesn't like, or they have a routine that bothers her, or another kid might hit her.  None of those would be huge things, but without being able to hear about them and talk to Janey about them, they might very much be impacting how she is feeling about school, without me being able to help.

As we parked this morning to walk in, for one of the first times ever, Janey tried to fight me on walking to the school.  She tried to go the other direction, to a playground she could see down the street, one she liked last year, with a water sprayer.  Or I assume that is what she was resisting.  It could also be that she just didn't remember what summer school was, and was upset we weren't at her regular school (summer school is in a totally different place).  She tried again to pull away from me when we walked past a door that I think they use to go to swimming, which she also loved.  It took all I had to keep her walking in the right direction, which was scary.  She gets stronger all the time.  I had to use my patter---my non-stop talking routine to keep her distracted and moving "Hey, let's head to school!  I think we might see Mr. Ken there!  We might see some of your friends there!  I wonder what they will have for breakfast?  I think you'll have a great time! Let's keep walking!"  It worked, for now.  There will come a day, I am sure, when I won't be able to get Janey to go where I want her to go, physically.  That day scares me to think about.

And so, she's off.  She's off for the day, and I'm home, and I will never know exactly what she did all day.  I might get notes, I might hear parts of it, but with a child that can't use their words, so much of what they do out of your sight is a mystery.  I just have to hope, to fervently hope, that she is happy and cared for and well.


Sophie's Trains said...

It is the hardest part for me too. The fact that Sophie has no words means if she's sad or worried she has to deal with it herself. That is such a burden on such a little girl and it breaks my heart. Does Janey use social stories? Maybe seeing certain plausible scenarios in a book might give her scripted phrases she could use in context (billy, no hitting! Don't like the playroom, etc)

The leading away Sophie is very good at that lol. It makes me sort of happy she has interests and things she likes to do. But of course the time I have left of being able to pick her up and carry her away is limited. The patter works with Sophie too, in a limited way. I don't know if its the content or just rapid speech that she finds somewhat placating.

Laura Wilson said...

It's a phrase I've never really cared for and it's not always used with kids. I worked at a women's health clinic for many years, and I remember that when women were undergoing procedures, such as abortions or coloposcopies, or even routine pelvic exams, and the woman was in pain and crying or moving around, we were often trained to say "use your words." Now granted this is a little more appropriate when someone is screaming in pain, because most of the patients COULD use words, and it was important that they verbalize so we could better understand what they were physically feeling, and therefore, take appropriate precautions or measures. But I always preferred to say something more like: talk to me! Tell me what's going on, so we know and can help you.

Suzanne said...

I'm never sure about that, but I think it's the rapid speech, and the tone, which I keep upbeat without being over the top excited. Enjoy the days you can still pick Sophie up! I think it was about a year ago I no longer could in any way with Janey. I've done social stories a little, but I should try it more, for the scripted phrases. I gave up on them some because it didn't seem like Janey really understood the concepts, but I think if I told them in the way every time, with a scripted "punchline", it might be helpful. Just recently, she started saying "It's MINE" which is something I think they taught her at school, and the first time she said that to her brother Freddy was great! Even thought it wasn't hers at all....

It breaks my heart too, thinking of Janey or Sophie having to work through scary things on their own. Today was great, though, in that I could see the minute I picked her up that she'd had a fabulous day. She was smiling hugely and so were the teachers and aides. I was thinking that's one thing that's easier with her than with her siblings---she wears her feelings outward. I don't have to guess if she's just pretending to be happy---she doesn't pretend!

audball said...

So happy to hear that things went well for Janey! And I agree, one of the many good things about my girl is that she is simply incapable of hiding her true feelings. I'm glad I don't have to guess at her emotions and I love that she tells me the truth - always! :)

I agree that "Use your words" is just the worst command a parent can give a child on the spectrum. It often doesn't work for my son (who isn't on the spectrum) who has anxiety, since his brain literally freezes up the same way. And typically, parents/teachers who say "Use your words" are doing so in a harsh tone…nothing like scaring a child into using his/her vocabulary!

Suzanne said...

I'm glad to hear I'm not the only one with "use your words!" Laura, if someone ever said that to me while I was undergoing any painful medical procedure, I'd feel very shamed and would just clam up. I like your phrase much better, because it includes an explanation and an offer to help. I can remember so well as a child feeling scared so much by people that sounded harsh, and they almost always sounded harsh when saying a phrase like that. Although I was certainly very verbal, I wasn't great at expressing my feelings, like your son with anxiety. The even worse thing I have heard a few parents say to their children when the children were crying or looked angry is "Fix your face!" That almost makes me sick. It seems like a total denial of a child's right to show their feelings. No sympathy, no offer of help, just a demand to stop looking that way.