What the AAC consult said and what I think

At Janey's IEP meeting, I requested she be evaluated by a specialist in AAC (Augmentative and Alternative Communication).  She has had access to an iPad with Touch Chat, an AAC program, at school, and we recently got her a new iPad at home and put Touch Chat on it.  My main goal with all of this is to find a way to decrease Janey's frustration with what I think is word finding problems---when she knows in her head what she wants to say, but can't find a way to say it.  I also just wanted to give her another way to communicate, because although she does talk, her speech is limited.

The consult was done about a week ago, and I got the report this week.  It was a good report---thoroughly done, and I felt the woman who did it got a pretty clear picture of Janey's speech as it stands now.  Her conclusion?  That AAC apps are not something that will help Janey's speech, that in fact, they actually distracted her from communicating functionally.

I was not totally shocked by this conclusion.  There's a couple reasons for that.  One is that for years, I had sort of thought the same thing.  When I had downloaded test versions of several systems like Touch Chat, Janey had no interest, and in fact really seemed to not like the programs.  She even said one time, when I said something like "this can help you talk", a very clear statement "I CAN TALK"  The other reason is that I have been told through the grapevine that the powers that be in the school system (not the teachers or therapists, but the higher-ups) never want to say kids will benefit from AAC, because then they have to pay for iPads or the like.

However, I have to say I don't think I agree that AAC is not a useful tool for Janey.  The main reason the woman evaluating Janey concluded it wasn't is that although she can navigate the system and she show an interest in exploring it, she isn't using it to communicate.  My answer there is---Yeah.  That's why I would like her to get HELP with using it.  It seems like what is being said is something like "She shows she could use it, and she shows an interest, but she doesn't already use it to communicate, so we aren't going to recommend teaching her to communicate with it"  That seems like saying "well, this kid has the capacity to read, and is interested in reading, but she doesn't read yet, so we won't teach her"  It just doesn't seem to make sense.  And isn't exploring a way to learn?  When babies learn to talk, not every single utterance is for communication.  The tester noted that Janey kept pressing the "stop" and "go" buttons, over and over, without a break.  Maybe she was figuring them out?  Maybe she wanted to learn them by repetition?  Maybe she was just having fun with them, and what is wrong with that?

Also, Janey DID, in the presence of the woman doing the evaluation, communicate with Touch Chat.  In the report, she said Janey navigated through a few levels of the application to say "Eat Goldfish Crackers"  However, the reports said that the tester didn't have any edibles with her, and it didn't seem to bother Janey, because she didn't seem to be asking for something to eat.  Now, just exactly how did the woman doing the test know that?  When Janey used the device to say something, why was it assumed she wasn't really saying what she was saying?  I do know the impulse to think "She doesn't really mean that".  For example, at home, Janey has quite a few times gone through several menus to make Touch Chat say "I don't want to wear white.  I want to wear orange"  Because Janey has never, even either shown she knows colors or objected to any certain color being worn, my first impulse was to just think she was playing around.  But I realized that's a pretty big thing to assume.  Maybe Janey never had a WAY to tell me that before.  Maybe she really does hate white clothes.  Maybe she wants more orange in her wardrobe.  No matter what, it seems pretty presumptuous to give someone a way to communicate and then when they do, to assume it means nothing.

To be fair, I really am not sure myself if AAC is going to help Janey with communication, and I don't know if Janey wants to use it or not.  After the initial few days with the Touch Chat (and Proloquo) at home, Janey has been rejecting using them, at one point very pointedly by means of hitting me in the face (I made her stay on her bed and not have TV for a while, but I left the Touch Chat out for her in case she wanted to speak ill of me on it!)  But I think she deserves a chance.

The good part?  Janey's wonderful teacher agrees with me.  Today, I sent her new iPad into school, and the teacher is going to update Touch Chat with things like the names of her classmates and with phrases they working on.  She is going to continue to make it available at school, and we will continue to make it available at home.

I'm trying not to get discouraged.  But at times, I do.  It has seemed over the years this same kind of scenario has played out a lot.  I am told there's some kind of help available.  When I actually decide to try to get that help, it's not actually available in Janey's specific case.  This isn't quite like that.  Nothing stopped us from getting Touch Chat on our own (and I'm glad we did, because if we had wanted to get it paid for by the schools, we would have been out of luck).  We are so, so lucky that Janey has a teacher that believes in her and works closely with us to coordinate our efforts.  But still---it feels often like a theme.  Janey just doesn't quite fit into any program.  She's not "high-functioning", as the music classes we looked into required.  Special Olympics, while friendly and welcoming, was not at all aimed at kids like her.  And now, her particular combination of being able to talk some and not being instantly inclined to communicate through technology---she isn't quite right for AAC either.

More and more, I realize there just isn't a lot out there to help.  And more and more, I appreciate the hands-on school people, the teachers and therapists and aides and all that don't say "she's not quite what we are looking for" but instead just accept her and work with her and love her.  And that is what we will keep doing at home, too.

Will she enjoy it? Will it benefit her?

Yesterday, on Halloween, I found myself desperately wanting to take Janey trick-or-treating.  I loved Halloween as a kid.  It was a day where everything was turned on its side, where you could go to people's houses and knock and get candy.  I loved the whole process, especially coming home with a big bag of candy and sorting it out and looking it over.  When the boys were younger, I adored taking them out on Halloween.  I read a few days ago about a local college having something called "truck or treat", where a lot of cars park and you can go from car to car trick-or-treating, and I made plans in my head to take Janey.

Yours truly, with my sister and father, on a long ago Halloween

However, we didn't go.  Janey is a very early to bed girl, and she was very tired by the time it was dark.  She was also very engaged in watching "Mickey Mouse Clubhouse", as we recently got new channels on the TV.  I struggled with myself---should I push for it?  Should I take her?

When trying to decide, I used a few questions that I've recently started to apply when deciding what activities to do with Janey.  Will she enjoy it?  Will it benefit her?

Well, she might enjoy trick-or-treating a little, but at that particular time, no.  She really doesn't get the point of it, she was tired, and when I asked her (probably over and over) she showed no interest.  She's very capable to letting us know when she wants to do something, and she just didn't want to.

As for a benefit, well, no. Chocolate is the one food we don't give her, and going someplace to get a bag of candy that most certainly would include chocolate, which we'd have to fight to keep her from eating---no.  It could be argued that she might pick up some social skills, but it's a hugely isolated set.  Most of the time, you can't go around to people's houses or cars and say "trick or treat" and then get candy.  So any argument that it would benefit her was pretty weak.

When I started applying the questions to activities, it opened my eyes.  There's a lot I'd like to do with Janey, or like to have her get to do, which frankly are things that I want her to do, not things that will give her enjoyment or benefit her.  This past spring, we tried Special Olympics for a bit.  It might be great for some kids, but for Janey?  No.  She had no interest in it.  She is not competitive, she didn't interact with other people there, she didn't get exercise from it as she wouldn't readily participate.  It was nice to get outdoors, but we could do that any time and place.  I realized it was ME who wanted her to be in it, for reasons that had little to do with Janey. 

Janey very happy, headed to the store.

I'll contrast that with an activity Janey very much enjoys and benefits from---the daily walk to the store.  The store is a convenience store near us, which changes names constantly but is currently a 7-11.  The after-school walk there is Janey's favorite ritual.  She asks for it every day.  When we get out to the driveway to start the walk, she is literally dancing with excitement.  I hold her hand and we walk the short way to the store.  She goes in and looks over the chips for a long time.  She only ever picks out the same two or three kinds in rotation, but I know how just looking over a shelf of choices can be a thrill.  When she picks her chips, I then switch the big bag she picks for an identical small bag, and we talk about how they are the same.  She takes the chips to the counter, waiting in line if she needs to, she is patient while I pay, sometimes she'll say thank you to the cashier, she gets a lot of smiles, and then we walk home.  She eats the chips in the driveway while the colony cats of the neighborhood circle her legs to get dropped chips.  She is happy and engaged.  She is also learning---learning the rules of walking along a busy street, how we exchange money for products, how we act in stores, how we treat animals---lots of things.

There are other activities Janey enjoys and benefits from---car rides with music, cooking with Daddy, picking out and putting on videos, going to the library to pick up the books I've ordered online and of course going to school, the big one. 

I wish that Janey could participate in more activities.  But the truth of it is, when I think about it, I wish that for ME.  Not for her.  Her life, when I allow myself to broaden my view of what an activity is, is pretty full already.  In this age of Facebook, I've realized that sometimes what I've wished for are Facebook photo opportunities, a little.  I'd like her to do more of the "normal" childhood things.  But she is 13.  She's growing up.  By that age, she knows what she likes and doesn't like.  I think about myself.  If I had been made to participate, at that age, in sports, or in an art class, or in a dancing class, all things I have little interest in or talent for, I would have hated it.  So they would have failed the enjoyment question.  But would they have benefited?  Truthfully, by that age, no.  I am much the same person now I was then.  I don't like sports.  I am not artistic.  I don't like to dance.  And I knew my mind by that age.  I knew my limits.  Some might argue this point, but from what I've learned from my sons, kids by that age know what drives them, and Janey is not different from other kids that way.  It's very, very easy to tell what she loves and what she doesn't.

As Janey gets older, as her own path in life starts to become more defined, I need to give her the same respect we all deserve, the same right to find her own passions.  It's even more important for me to follow her leads, because it is far too easy when a child doesn't communicate in traditional ways to impose our own will on them.  I'm going to try to often stop and ask---will she enjoy this?  Will it benefit her?---and use those answers as my guide.

Thinking about Rosemary Kennedy

I just finished reading "Rosemary--The Hidden Kennedy Daughter" by Kate Clifford Larson.  It's a very well written and fascinating account of the life of Rosemary, the eldest daughter in the family that included JFK and Teddy Kennedy.  My mind is swirling with thoughts about the book and her life.

There were really two lives of Rosemary.  One is before she had a lobotomy, one is after.  Before, she was what I'd call mildly intellectually disabled.  Certainly she could do many things Janey can't---read at a 4th grade level, write letters, talk quite well---she functioned well enough to be presented to the Queen of England without anyone realizing she had a disability.  But then, as she entered her early 20s, mental illness started to complicate her life.  She became angry and aggressive, and it became harder and harder to accommodate her needs.  Tragically, her father decided to have her undergo a lobotomy, which went horribly wrong.  After that, Rosemary was severely physically and mentally affected. She did recover slightly in some ways, and occasionally did speak in sentences, and although she lived out her life in a house on the grounds of a nursing home, cared for by devoted nuns, starting about 20 years after the procedure, she did quite often visit her family and was part of their lives, until she died in her late 80s.

Several things struck me very much about her story.  One of them is how even having all the money and power in the world wasn't able to substantially change her functioning.  Sometimes I think "if only I had the money to get Janey the very most cutting edge care, all the devices and lessons and private schools and aides I could imagine..."  But in reality, I truly feel that most of us, Janey and Rosemary included, learn what they are able to learn and do what they are able to do if they are loved and given the chance.  You can make sure they learn what they are able to learn, but you can't really change what that level of ability is.  When I look at other kids I've met at Janey's schools, I see that.  Some make tremendous progress.  Some don't.  They are given the same kind of teaching, the same kind of opportunities, but in many ways, we are all going to be who we are going to be.  And that's not a bad thing, necessarily.  It leads me to what Rosemary didn't seem to get from her parents---acceptance.

Rosemary was moved from school to school, from program to program, in hopes of making her "normal".  When I look at what she was in her early life, I have to admit I think I'd be thrilled if Janey was able to do the things she could do.  But I don't think it ever was considered to just work with what she had, to say "let's find a way to give her a good life with the abilities she has right now"  I wonder if that had a part in her lashing out eventually.  I think about what it must feel like to be constantly pushed to do or learn things that are beyond one's ability.  If someone decided to spend all their time trying to teach me calculus, or even legible handwriting, or gymnastics, or hairdressing, or a number of things I can't do and I honestly don't think I'm capable of doing, I can't even imagine how upset I'd feel after just even a few hours.  If this went on for years, I think I'd be very, very ready to lash out in any way necessary to get it all to stop.  I don't blame her parents.  In many ways, they were ahead of their time.  They wanted to give Rosemary the best life they could, and in their time, that would be by making her not disabled, and like so many desperate parents, they did everything they could to try to do that.

There's a fine line, of course, between teaching someone what they CAN learn and not pushing them to do what they CAN'T learn.  I know it's sometimes impossible to know where that line is.  But I think our kids let us know.  Janey learns eagerly, when she is able to.  I have to trust her enough to believe that she isn't trying NOT to learn.  I have to believe that the fact she can't read or usually talk in full sentences or be completely toilet trained after many, many years of working on those things means that to some extent, there is a reason she can't learn those things.  It's not giving up to admit that, I don't think, any more than it's not me giving up that leads me to say I'll never be a mathematician or a gymnast or a hairdresser.  It's a matter of deciding whether to go with strengths or not.

In the end, although Rosemary's life story is very sad in a lot of ways, I was hugely touched by something her sister Eunice, founder of Special Olympics, said in a speech in 2007 "Tonight, I want to say what I have never said before: more than any one single individual, Rosemary made the difference"  She was referring there to her influence on her brother's presidency, but in many ways, the fact that she was part of a hugely influential family who devoted much time and energy and money to helping the disabled means that she made a difference for probably millions of lives.  She mattered, as does Janey, as do all our daughters and sons with disabilities.