Subject: Communication

Hi again,

I wanted to start using some sort of a communication board on Coralynn, can someone give me an idea of which is the best beginner one? She now uses pictures but not consistently.

Corinne (mom to Coralynn age 51/2 )

Subject: RE: Communication

Corrine, our process for getting to using a communication device was a step by step ordeal over almost 2 years. When Kolade's speech therapist thought he had reached a point where the device might help him, we arranged for a company to come to school on a couple of occasions - basically to meet with myself and the therapist to discuss different types of equipment and what options we had, then they came back and we did a session with my son and the equipment to see how receptive he was to it. We also have an annual meeting in Mass. - its the Assistive Technology Group - and I went to that with the therapist and there were many other companies with displays and we got to see and talk and try out quite a few devices. We then went through an evaluation at Children's Hospital geared toward assistive communication. They tried Kolade out on different pieces of equipment and also made recommendations. The biggest benefit of having the Hospital recommendation came in getting the equipment paid for. Since the device was to be used at home and not just specific to school, the school dept wouldn't pay for it. With the hospital's recommendation I was able to get several local organizations to donate toward the equipment - e.g. Knights of Columbus, Lion's Clubs & Auxiliaries, etc. This of course would depend on the insurance you have available - our insurance wouldn't cover it since its an optional device and not a necessity (in their opinion). It was a somewhat tedious process but in retrospect the results have been worthwhile.

Note: In Massachusetts the Assistive Technology Group usually has its meeting in Boston in the Spring. All types of equipment are on display - for virtually any handicap - from telephone services to construction companies who specialize in making home adaptions to discovery toys folks, people who specialize in making adaptive bikes, etc. The University of Lowell also usually has a booth and they encourage people to submit ideas of types of equipment they might need and the University will select some for the students to use as their senior projects. I've seen some very basic things that they've created but it gave the students a chance to work with a client on developing something they thought was necessary. The attitude was, if you can think it, we can probably help you build it - most of what I saw was in the communication area.

Good luck in finding something for your daughter, there are a lot of devices on the market.

Tammy (Kolade's mom)

Subject: Re: Communication

Regarding Tammy's message...

I live in Kentucky, and we went through a similar procedure -- although not as arduous -- before selecting the AlphaTalker for Emily. It basically involved a technology assessment done by an expert in assistive technology at the University of Kentucky. She was contracted by the school system to do this (we had to request the technology assessment) and made recommendations for both the assistive device as well as computer assistive devices and software after working with Emily many different times at her preschool and visiting her at our home.

In order for the school to pay for it, we made a case that having unrestricted and sole access to the device both at school and at home would help further her progress on her school-related IEP goals. The device actually belongs to the school system, but it goes where she goes -- to home at nights, weekends, holidays, etc. -- even over the summer. The same case was made to obtain her a walker which she brings home also.

I think it's outrageous that Kolade's school system didn't pay for his device! Maybe you can try to get reimbursed, although I know what a pain fighting these battles is.

Marianne (mom to Emily, 6, +)

Subject: Re: Communication---MACAW.---Poloroid pictures

Susan has had a MACAW for three years---we're still trying if figure out the best way to utilize all it's wonderful facilities.

Wherever Sue goes we take along her poloroid camera--instant gratification. She loves the pictures. I usually coat them with contact paper. We take pictures of whatever she is doing. She can come home and show me a picture of what she did. She then uses the pictures to show me what she wants to do or who she wants to see.

For her MACAW we copy and shrink the pictures ( at any copy shop) and put them on her MACAW with an appropriate saying such as---a picture of her smiling and waving---the words are "Hi---How are you today?" She has another picture of her smiling that says "I feel great". She doesn't really repond to the line drawings and it is so easy to shrink a picture of her going horseback riding, swimming, cooking etc. We also have a communication board which we can put the regular size pictures on for her to select what she wants to eat.

The problem---what do you do when she pulls out a picture of a hot dog and you don't have any?

It's really diffucult---but when she asks for something via the MACAW or a picture---and we have it---she is so pleased and we are ecstatic!

Subject: Re: Communication---MACAW.---Poloroid pictures Date: Mon, 5 Aug 96 13:40:16 EDT From: <tscott@powdml.ENET.dec.com> Reply-To: angelman@tbag.osc.edu To: angelman@tbag.osc.edu

Hi, yes I also use a combination of "real" pictures and Mayer Johnson pics for the MaCaw and the Communication book. It does seem more real that way. As for not having something when Kolade asks for it - if its food I usually let him look in the refrigerator or cabinet so he can see that its not there and then I offer him something else and try to distract him. Some of our toughest times revolve around food - Kolade seldom wants to wait until I cook things and is constantly trying to grab things from the stove. I've done the reward option - if he sits and does a puzzle or some specific activity while I cook then he gets something special. Most of the time its harder to divert him to the activity than to just play policeman at the stove. Plus he whines constantly until he gets his food.

Regards.

Tammy Scott.

Subject: Re: Communication---MACAW.---Poloroid pictures

Susan has had a MACAW for three years---we're still trying if figure out the best way to utilize all it's wonderful facilities.

The problem---what do you do when she pulls out a picture of a hot dog and you don't have any?

It's really diffucult---but when she asks for something via the MACAW or a picture---and we have it---she is so pleased and we are ecstatic!

Re: Communication

Heikki. This is Deanna again. For at l east the last six months, Katie A. has used something similar as her "own" sign for, "I want..." We then try to figure out what she wants. Lately I've been taking her to her talker to see if she can find something on it to indicate and about 60-70 % of the time, she can. Probably the rest of the time, what she wants is just not represented on her talker. (One of her favorite messages on the talker is "Please come play with me"!) (What did I do wrong to get that separation in the text and how would I correct it? As anyone can see, I'm not very good with word processing functions.) The "personal sign" that KT uses is: she will bring her open hand to her slightly open mouth and repeatedly tap next to her mouth. I agree with your interpretation that Liisa is probably trying to voice an objection to your "No" or to argue with you.

Deanna

Re:Communication

"KT's sign isn't her reaction to NO!, is it ? " No, KT's sign isn't a response to "no", it is something she uses spontaneously to try to communicate that she wants/needs something. On further reflection, I wonder if the kids aren't simply trying to communicate the desire to have something verbalized-whether to argue or ask for something, etc.--a "talk for me" request. We worked diligently for several years to try to get KT to use signs, but her fine motor control in her hands is so poor that we really don't try much anymore. At that time, she had a repertoire of about 5 or 6 signs that she could only approximate, both on demand and spontaneously. Unfortunately, the approximations were so poor that only those very familiar with her would be able to understand what she meant. Her best form of communication remains that of "show to tell" (ie: taking a person to the desired object or activity, manipulating a person's body to show them what she wants, etc.) The "talker" is slowly becoming more useful.

Deanna

Subject: talkers

Jennie uses the Vocal Assistant. We chose it because it is very small, lightweight and portable. She has had a few larger ones and did well and graduated to smaller pics. It has 2 levels of 15 messages each. We have home pics on one level and community pics on the other. Here are her pics: Hi, my name is Jennie (pic of Jennie) I'm hungry(pic of plate of food) I'm thirsty (pic of glass of liquid) I want to go home now (Pic of house) This is my friend Lauren )pic of Lauren) I don't feel good, can I have some Tylenol(pic of Tylenol) Would you put a tape on for me please (pic of VCR) I'm all done (pic of girl holding up arms) Where are we going (pic of car) Can we go to a restaurant today (pic of restaurant) Can we go swimming (Swimming) Let's go shopping (pic of store) I have to go to the bathroom (Toilet) It's bath time (tub) I'm tired, I'd like to go to bed now (bed) She knows all pics well, but doesn't use the talker as much as gestures, pulling me around, pointing, etc. The Vocal Assistant cost $600.00. It has a keyguard to help fingers go into proper space.

Janice (Jennie 15+)

Subject: RE: talkers

Janice et al, I'm glad to hear the communication devices are having some success, Kolade is becoming very dependent on his - particularly at school. We've done pretty much the same as others have expressed - combination of actual photographs mixed with some Mayer Johnson pictures. Our machine, MaCaw, has a specific amount of recording time with room for 32 pictures and up to 5 levels - We've broken the levels down by some specific areas e.g. one is for home, one is for circle time in school, one is for general play time, etc. Of course, I've been concerned that I've chosen the right things to put on the machine to give him enough flexibility to express himself. The good part is that if a pictue or message doesn't seem to be working its easily changeable and using the device has cut down on a lot of the grabbing and pulling to get attention.

Tammy

Subject: Re: talkers

You wrote:

>Janice,

>Hi my name is Dawne. My daughter Jacqueline (2-3/4, del +) is currently using gestures and >sounds to let us know what she needs, but it is sometimes difficult to interpret. She has a few >photos that she will bring if she wants mommy, daddy, sister, or grandma, but that is about all. >I would be interested in obtaining any information you could send us about your daughters >"talker".

>Thank you, Dawne (mom to Jacqueline, 2-3/4, +)

Hi Dawne, I got Jennie's talker from Luminaud-1-800-255-3408. It was $590.00 + $25.00 for a keyguard. I was able to get a loaner to try before I actually purchased the talker. If you work with Jaqueline's therapist, they will probably let you borrow one also. They are funny about lending to individuals, rather than institutions of learning. I also have several 1-800 #'s you can call for more catalogs from other companies. I will send you more #'s tomorrow. When Jennie first began using pictures, I pasted them all over the house. Pics of food were the most motivating. When she pointed to an item, I ran to get it and made a big deal over it. A company with tons of great realistic looking pics is Attainment Co. 1-800-327-4269. They have shopping and restaurant cards that come in real handy. It is so nice for Jennie to be able to choose her own meals in restaurants or help decide what we'll have at home. I found that Jennie does best with realistic and colorful pics. The symbols were confusing to me and sort of boring. Attainment also carries some fairly inexpensive talkers. I chose the Vocal Assistant over theirs because it was more durable. The speech was also clearer. Prentke Romich carries several also, including the Alphatalker. Their # is 1-800-262-1933. I will send more tomorrow. I have to dig them up and everyone is in bed!

Good luck,

Janice (Jennie 15+)

Subject: Communication aids

Dawne & anyone interested, More phone #'s for communication devices:

Innocomp (great) 1-800-382-8622

Adaptation Incorporated 1-880-723-2783

Ablenet 1-800-322-0956

Sentient systems 1-800-344-1778

Gus! 1-360-715-8580 (E-mail to gus@gusinc.com

They'll send you catalog.

Good luck,

Janice

Subject: Attainment Products

DCavalucci wrote:

> Janice,

>More info about "Attainment", please? Deanna & Corinne,

Attainment is a company that has products for people with special needs. To order a catalog, call 1-800-327-4269. I especially like the Wordwise Sticker Set (I used them on Jennie's talker). They have these really realistic cards of of food items. They are called Shopping Smart (for shopping, but I use them for Jennie to choose food also) and Meal Time (These cards are for restaurants to choose what you'd like to order). When you get the catalog, you'll know what I mean. They also carry talkers, Mac computer programs, daily living items, and voc stuff. Janice (Jennie 15+)

I can't belive it! As I am typing this, Jennie is watching Popeye and laughing like crazy. A minute ago it was Bugs Bunny! she usually only likes "real people" shows.

Subject: Sensory Intergration

Marianne, Brittany's diagnosis only came about 6 months ago. Before that we were diagnosed with Sensory Integration Disorder. For about a year we worked strickly on Sensory problems. We had an assortment of brushes, bath scrubs etc that we would rub on her everyday. Now she does great with touching. Our only problem is brushing her hair. She hates it. But I think it is more of a sitting problem than sensory. So I do think all of the extra brushing of her skin helped. Oh yea, they did teach us that when you brush her arm or back or whatever you should brush the way the hair grows. Who knows!! Brittany was also born after a miscarriage which resulted in the loss of one of my tubes. That was about 6 months earlier. And to Kay, thank you for sharing that letter with us. That said alot of what I feel.

Tonya Gordon

Subject: Re: sensory integration-reply

Hi Marianne-

An occupational therapist tried sensory integration therapy with Whitney several years ago. I believe she gave us a small book which was written by the people who created the therapy. They were from Santa Barbara, Ca. I remember using a surgical brush and we did do the joint compression, too. Whitney fought it at first, of course, and gradually tolerated it better. We started it during the school year, and I think things got very busy and we finally stopped doing it.

The description of sensory integration and tactile defensiveness certainly made sense (no pun intended)... and how everything is interrelated and what an impact problems in this area have on development. I was surprised to read that "gravitational insecurity"- not knowing where your body is in space- is a part of tactile defensiveness and sensory integration. Since Whitney is very tactile defensive- I concluded that that is why she was late to walk independently! For YEARS she would walk with one hand/finger support... but would shake in fear when we tried to remove the small support. We wondered about depth perception at the time (had no diagnosis) and worried that she might never go it alone!

I pleaded that they have someone do a presentation on sensory integration at the Colorado conference- something very practical and possibly VERY beneficial... but the planners didn't seem too interested. I'm glad they're having one in Calgary!!

Thank you for bringing that up!

Alice

Subject: Re: sensory integration-reply

Thanks Alice, I think I have the same booklet you described, plus I saw a videotape of a therapist working with a baby. Emily also is quite strongly fearful of gravity -- I was also surprised to see that it was part of sensory defensiveness. Emily is just now walking with two hand support and she will be 7 in October. When she first sat unsupported at about 15 months, she wouldn't move...she literally would stay in the same seated position until someone helped her "down." Some other sensory defensiveness categories that I was surprised to read about involved taste and smell and strong preferences and reactions to certain foods.

Marianne (mom to Emily, 6+)

Subject: Sensory Integration

Coralynn has had sensory integration therapy since she was 14 months old. Thank goodness she has had a very wonderful therapist. We originally met her at the when Coralynn was first diagnosed with epilepsy, she workded for the local Elks therapy for kids program. At that time she was free to us, then she opened her own buisness. Now she is $80.00 per hour. Our medical pays for all but $16.00 per visit. I feel sensory integration has helped Coralyyn remarkebly. She used to tighten up imediately when you tried to touch her ,and you couldn't even look at a hair brush. Now she still hates to have her hair messed with but I think it is more that it feels confining.

Corinne

Re:Communication

David has never had anyone who could teach him sign language. So when he was a teenager, school began to give meaning to his signs. At one point he was tapping his lower abdomen, so that became the bathroom sign. Over the years, he has changed it so that now he grabs between his legs which becomes embarrassing at times but it works. At age 28 it is time to change the sign.

You are fortunate to be raising your children in the 90's. During the 70's & 80's education for the severe and profound was in its infancy in our area and David was so different from the others. He was considered to be the lowest functioning (except for a few students who were multiply handicapped) in each class. They couldn't get him to look at what they wanted him to do and consequently many teachers stopped trying. They refused to give him speech therepy, when sign language failed, because he had no speech. He finally received it as a teenager but only on a consulting basis.

Because the "experts" weren't able to teach David, we stopped trying and created a safe, happy, loving environment for him. Constant observation and intervention protected him and the home furnishings. Looking back--it was David who educated himself and us. Noone ever taught him to spell, but he can do some facilitative communication (usually only one word and then only if we insist but he can do it). Carolyn still has trouble spelling some words and she was a National Honor Society student. Severe/profound--no way.

NEVER UNDERESTIMATE THE ABILITIES OF YOUR ANGEL!

Carolyn, Fred & David Windbeck, Silver Spring, Md.

Subject: Sensory Integration

Hi: We left for a trip to Colorado the first of July and ended up extending our stay there, arriving home just in time to pack up and head to Calgary for the Conference. There is absolutely no way to catch up on the huge volume of mail while away. (but I'll keep trying!!!!) I strongly, STRONGLY recommend to every parent I meet to read "Sensory Integration and the Young Child" by Jean Ayres. You will probably have to have the bookstore order it for you. It is written for parents and is easily understood. You have to have this base knowledge of how we all learn and what it looks like when it's abnormal to understand S.I. is more than just techniques and ideas that you do on your child. You won't want to put the book down. I feel it's one of the most important books any of us should read. Talk later.

Beth Sturr Kailey, del. + age 6