Subject: Communication

Martha, I remember the first time I put a Barney tape in, I didn't expect Emily to be interested -- she never attended to anything for long. (She was about 3, I think). Well, she watched the whole thing and didn't move. I told her preschool teacher and therapists who looked at me like I was nuts. So I brought the tape to school to prove it! I remember once when she was getting a "technical evaluation" to see how well she would use a speech device, she was totally uncooperative. Yet, when they showed her the computer that had a really cool CD Rom storybook program, she attended beautifully! She was not at all interestd in the basic cause/effect programs and the touch window frustrated her (she kept flapping her hands on it and cancelling out her choices). She does much better with a mouse or jelly switch.

Do you (or anyone else) know of better ways to teach Emily that pictures represent something so that she can really start to communicate? The way the therapists have been doing it (for 6 years now, largely unsuccessfully) has never made sense to me. They put the actual object next to the picture and want Emily to touch the picture. But Emily is looking at and reaching for the actual object. Isn't that also communicating? Where is the incentive?

Marianne

Subject: Re: Communication

Dear Marianne,

I wrote you such a fine, long-winded reply last night, but Prodigy blew out just before I finished.

I can tell you what we've done with Sara. I bet you've done some of the same with Emily.

I doubt that the object/picture technique would work with Sara, either. I guess they think it's less abstract to use the concrete object, but I think it is actually more abstract because there is just one more step required, if you see what I mean.

We have always watched a lot of TV. Are you horrified? I find it is a way for Sara to receive information which does not require eye/hand or fine motor skills. We do not watch passively. When we watch Sesame Street, I repeat everything they say, with lots of emphasis. We dance and clap hands and make up movements where we can. This is tedious and tiring for me, but it is where Sara first got the notion that nodding her head means yes and that other people can respond to that.

Whatever Emily does right now to communicate, I would verbalize for her. If she reaches for something, I would say "You want the ..." and I would never, ever ignore a sound or gesture she makes. That last was our biggest mistake with Sara. We either ignored what she was trying to tell us, or we disregarded her wishes. Now, if she shakes her head no when I want her to do something, I respect that unless it's really important that she do whatever it is, and then I tell her "I know you don't want to do this, but this is important and you just have to do it." and then we do it. So long ago I recognized with my other child that it's important to choose your battles, yet I was willing to fight with Sara every step of the way. Her school, by the way, disapproves of this, but I don't care. How else can we reinforce her communication, if we don't respect what she is telling us?

On a more formal front, Lisa (TSS) made a communication / schedule board for Sara with velcro-backed line drawings of stuff like the TV, meals, etc. Sara checks her schedule first thing and takes the top picture (also has the word printed on it) to the area where the activity takes place. For example, her "chores" card goes to the velcro station on the wall outside her bedroom. She places the card on the station and then does her chores (put away clean clothes, make her bed). Then she takes the card back to the big board and puts it on the "finished" side. She then takes the next top card on the "to do" side and so on. I like the way this works because it creates a structured day, it allows flexibility, and Sara has some freedom in choosing what she does. For instance, if she wants a snack, she'll sneak the snack card off even if it's not next in line!

How is the alpha talker working for Emily? I think we're going to get one.

Martha

Subject: Re: Communication

Martha,

Thanks for the ideas -- I'm going to try to teach Emily to nod and shake her head. I understand when she wants/doesn't want to do something, but using her head would enable her to communicate with anyone. I feel the same way about respecting Emily's wishes. I never realized it until I had a normal child -- who is 2 and definitely makes her likes and dislikes known -- that I really wasn't letting Emily make many choices. And it seems like we were always forcing her to eat. I'd never get into a power struggle with my youngest over food, I don't know why I did with Emily. I've really changed my tune, though.

I just bought a polaroid camera because it seemed like we were always waiting for film to be developed to get started on anything. Emily has been choosing her breakfast from three pictures, and I'm trying to find some other more natural choices for her to make. (Videotapes, maybe?) We've made our house so accessible that she can pretty much choose what she does for play without having to "ask." I would really love to find a way for her to articulate what's wrong when she's upset about something...whether she feels sick, tired, sad, whatever...but it's all so abstract that I'm not sure what type of picture she'd relate to correctly. Any ideas?

She's making progress on the alphatalker for indicating that she's all done with something and asking for a drink or snack. The other things on it are more for receptive speech, to model using it, like a picture of a school bus. She has always liked the voice-output part of an alphatalker better than picture boards. It's pretty bulky, although it's better than its predecessor, the introtalker. I've seen much smaller, hand-held devices in catalogs, but I don't know how good they are. The alphatalker, despite its expense, still distorts the speech some. My husband is an audio engineer and he plugs a regular microphone into it to get less distortion.

Marianne

Subject: Re: Communication

Dear Marianne, Usually when we feel that Chris is hurting we give him our hand and ask him to show us what hurts then he will place our hand on that spot. Christopher hasn't been wrong yet we know this because usually we carry him to the doctor and if he has put our hand on his ear sure enough he has a ear infection.

Sam Henderson.

Subject: Re: Communication

Dear Marianne,

Gues what I bought yesterday? A Polaroid. So many mentions here of AS kids loving photos. And Sara sure does.

Sara learned "yes" from Baa Baa Black Sheep. Does Emily do any things that, if you examined them closely, might be attempts to "act out" words? Sara would always tickle me when we sang "Twinkle Twinkle Little Star," and it was a long time before I figured out the tickle/twinkle connection. Because of motor limitations, you really have to watch Sara to see these things, but once you do and reinforce them, she is so delighted, and the communication becomes much clearer. She seems to just need encouragement sometimes.

Several years ago I realized to my shame that it was very quiet when Sara and I were home alone. I used to chatter non-stop to her older brother before he could talk, but with Sara and no verbal feedback, it was easy to keep my thoughts to myself. I have tried and still try to keep up a running commentary on whatever I'm doing, she's doing, anyone's doing when I'm with her.

You know, the very accessibility of your house might be an impediment to communication. It seems cruel, but it might be better to restrict Emily's access to things she likes so that she has to ask for them. "Buh" seems to be a sound AS kids can make--can Emily? Does she have something special that starts with a B? Could you hide it and have her ask for it with a "buh?"

Expression of feelings, physical and emotional, is tough. We haven't worked that out, either, although Sara does whine and hit her fist on her head when it hurts.

I have to go. John will be home soon and is very envious of Sara's getting so much attention evidences by my letter writing.

Martha

Subject: Re: Communication

Martha, I was the same way when alone with Emily...very quiet. Emily has never been very verbal at all, except laughing, crying, and whining sounds. I've never heard a consonant. I will start paying close attention to her hand motions to see if I can find a connection.

I discovered something interesting at the doctor's office yesterday, however. I've always put up magazines and books because Emily has always been so rough with them, tearing and chewing, but I realized I never give her an opportunity anymore to do it "right." I was looking at a parenting magazine while waiting in an examination room. Emily reached for it, and my first reaction was to hold it out of reach. I decided to give her a chance and --with a little help from me on getting a grip on each page-- she looked at the magazine with me. She was still a little rough, but when she grabbed the magazine, she brought it closer to her face to look at a picture, and she turned the pages pretty well, too. We talked about the pictures and what was going on -- it was just like sitting with my 2-year-old. It was a wonderful milestone because we are big readers in my house and I've always been frustrated that Emily wouldn't attend to being read to, which had always been one of my "mommy fantasies" before she was born. I realized I had quit trying. This on-line group has been so inspiring for me and has made me a much better mother. BTW, Emily has chosen her breakfast every morning from the polaroid pictures since I bought the camera! Marianne (Emily,6.11,del+)

Subject: Re: Communication

I have gone to several toy stores and purchased the plastic play foods (banana, orange,apple,hamburger,tomato,ice cream, etc.) I sat these on a table in Grace's room and placed an empty drinking cup on the table. When Grace is hungry (or just want's to eat??) she goes over to her table and gets some food. I then take her to the Kitchen and she helps me with the preparation of the food. She has now gotten to where she will not attempt to eat the plastic food she will just hold it and crawl to me. I also take her to the grocery store with me and allow her to choose some of the food purchases, I then allow her to carry the items to the check out and all the way home with us. ( I tell her that when I find a job for her, she can pay for the food also !!! Our food bill is in the 700 - 800 $ range each month. - she just looks at me with her beautiful blue eyes and laughs at me) I also wanted her to gain an understanding of where food comes from and not that it just "appears in front of her mouth". I also have a snack drawer that has nutritional foods for Grace to choose from.

Grace consumes aprox. 4000 calories per day, she drinks Ensure Light mixed with Pedialyte. She eats mostly pasta with pesto sauce although she will eat mostly everything. Loves potato chips, dislikes sour foods and carbonated drinks. If we do not allow Grace to eat as needed, she will become lethargic and her blood sugar will drop into the 50 range. Her blood sugar has been as low as 14 and as high as 400. Grace spends several months out of the year on IV Fluid therapy. Without this, she becomes so lethargic that she can not lift her head or eat anything. We also give her Polycose - which is a Polymer sugar / Carbo. 18 tsp. per day. Along with 3 seizure medication's and Carnitor, Co-enzyme, etc. This has been the only regimen which has proved it self to assist in keeping her metabolism in a functioning state ( keeps her alive) It is allot --- but It does work. Without it, she has almost passed away on several occasions. Last year Grace was hospitalized for 4 months, in ICU for 2 weeks and at home on an IV for 2 months. Her Neurologist says that "If it aint broke - don't fix it" Thank God that we have options.

Suzanne Ewalt

Subject: Re: Communication

In a message dated 96-09-10 13:04:40 EDT, you write:

>I just bought a polaroid camera because it seemed like we were always waiting for film to be >developed to get started on anything. Emily has been choosing her breakfast from three >pictures, and I'm trying to find some other more natural choices for her to make.

Marianne, Here are two sources for pictures and cards used for comm. aids: Crestwood Company 6625 N. Sidney Place Milwaukee, WI 53209 Phone #: 414-352-5678

Imaginart 307 Arizona Street Bisbee, AZ 85603 Phone #: 800-828-1376 Email: imaginart@aol.co

The second not only has picture cards, they have color stickers in several sizes that I've used successfully with Katie on her comm. board (from age 3 to now) and also on her talker. Deanna

Subject: Re: Communication

>we give him our hand and ask him to show us

I've noticed that more and more, lately, that Katie will take my hand and guide it to something she wants to communicate about. Is this similar to or the opposite of FC? Meaning, in FC who guides who? I'm going to work hard with her on this and see where it goes!

Deanna

Subject: Re: Communication

Oh, Marianne, your note about the magazine in the doctor's office overjoys me. What a wonderful thing to have happen.

The note ahead of yours about Kiera's (I hope I spelled that right) tearing up books took me back. When Sara was in that stage (and she still occasionally destroys a book, but basically she did outgrow the compulsion to destroy all books), her teacher banned books from their classroom. The other kids were not interested, and Sara's only interest was in destruction. But you know what? I felt it was something she needed to do, and I wanted her to do someplace other than our house, so I talked the teacher into accepting books with the understanding that they WOULD be destroyed. Then I started scavenging. When John's class got new textbooks in science, I asked his principal if I could have the old ones, which were going to be thrown out. When the AAUW had its annual book sale, I asked what happened to books that weren't sold and was told that ones in good shape were donated to a shelter and the others discarded. I asked for and got the discards. Another good source of actually quite suitable books was the grocery store, when they would sell those series, like Sesame Street 12 volume dictionary or something, and the first volume is always 99 cents. When I felt flush, I bought five volume ones and gave them to Sara's class. So those kids had a huge supply of books and Sara could tear them up to her heart's content. It didn't matter what the subjects were, but books with pictures became more popular as the school year progressed. By the end of the first semester, there were actually some intact books left. As I asked the teacher (and as you asked yourself), "How are they going to learn to treat books with respect and interest if they're not allowed to have any books?" She was so pleased with our kids' progress that she started scavenging books on her own. Plus, the other kids in the class started looking at the books, too.

Sara loves to look at magazines with me, too, pointing to all the pictures of food she wants to eat.

Martha

Subject: Re: Communication

Dear Suzanne,

Your letter knocked me out. Does Grace have an additional diagnosis, or is her metabolic problem part of AS? I've read a couple of mentions of mitochondrial myopathy--does this have anything to do with Grace? Everything I've read and been told up to joining this list agreed that AS does not involve any other bodily, organic disease or dysfunction other than the ubiquitous MR/DD.

You must spend all your time shopping for food and preparing Grace's supplements/medications. Does she sleep well I hope?

How smart of Grace to "get it" about the plastic foods. I know Sara would fixate on eating them and that would be that--she doesn't seem to care what non-foods taste like; she'll eat them anyway.

Talking about wanting your child to understand where food comes from-- we had a great field trip, Sara and I, last weekend. I saw an ad for a pick your own orchard and because apples are among Sara's favorite foods ("wopples"), I thought we'd give it a try. It was great. No one else was there, a big plus for entering the unknown, and the trees had been pruned so that Sara was able to reach lots of apples quite easily (I had been expecting ladders or those long-handled pickers) and she ended up filling the plastic wheelbarrow they gave us--of course eating maybe five on the way--with almost 20 pounds of Macintoshes. She was so proud of herself. I took in a big basket of apples to my MDT meeting the next day to show off my young farmer's skills.

Martha Sprowles (Sara, 10, UPD)

Subject: Re: communication

Dear Marianne,

I'm still smiling thinking of you and Emily looking at the magazine in your doctor's office.

Last night when Sara woke up (12:45) I found that she had un-made her bed. She likes to "billow" her sheets and in doing that she'd pulled the bottom sheet off her bed. I wanted to get the bed put back together with a view to getting her back in it at some point, so I started pulling on the corner of the sheet. Sara wouldn't let me get the corner back on, and I said, "Sara, don't take it off; put it on." And she looked at me and very carefully said a perfect "off." I was of course delighted and told her what a good talker she was blah blah blah but then I did it. I tried to get her to say it again, and she looked like I'd hit her. I realized at that moment that I do this to her all the time. When she does say or try to say a word, I praise her and then try to get her to do it again. My husband calls this raising the bar in the middle of the pole vault. Speech is so very very hard for her, and it is such a triumph when she does manage to say a word, how dare I intrude on her glory like that? I resolved not to do that to her ever again. Some would say that speaking a single word isn't just hard for an AS child; it's impossible. But here I am, her mother, probably the person who loves her most in the world, devaluing her immense achievement by expecting her to repeat it!

I am one slow learner.

Martha

Subject: Re: communication

Martha,

Forgiving ourselves for not doing enough or for doing the wrong thing is the hardest thing for a parent of a special-needs kid to do! I loved what you repeated about therapy being the therapists job and that our job is to be the Mommy! But how great about saying "off!!" What a thrill!

Marianne