Subject: VS: AS kid learned to speak

Deanna Cavalucci wrote:

<< Kerland (sp?) therapy ? >> Elaborate, please! Deanna

Dear Deanna,

You just almost repeated my question ! I'm in the process of finding out the details of the Kerland therapy - the spelling is correct. I found virtually nothing in the Internet. However, there is a Kerland Institute, or Center in Bridgewater, England, and I guess the idea has originated from the U.S.. The Kerland therapy seems to be one of those techniques which require expensive training and a lot of work on the part of parents and aides. I'm not so sure, either, as to what is meant by "learning to speak" here - maybe just a few more words. Yet it is an interesting rumor.

Heikki Taimio, dad to Liisa (6, del-) Finland

Subject: VS: Speech in the Angelman syndrome

Damaris wrote:

Hi! My name is Damaris, I'm a music therapist from Spain. At present I'm doing sessions with a 19th years old baby girl who has the Angelman syndrome. Her family is specially worried because of her lack of speech and her comunications problems. They are trying to do everything they can, but there is only very few information about the syndrome in Spain. I'd really apreciate if you can help us to get some information about how to work with the baby in the area of speech and if you know any material that could help us. If you have any other comments that you think can be important, please contact me as soon as possible. Thank you very much!

Hi Damaris,

Welcome to the list. You mean the baby is 19 MONTHS old ? There are no communication methods or devices specially geared to the needs of Angelman children. As with other people who cannot, and will never (?) learn to, speak, there are a number of alternatives, such as gestures, signs, picture boards, talkers, cards etc. I suggest you find about these. Your question is at a fairly general level, so please don't hesitate to ask further questions. There is always someone who will respond.

Is there an Angelman Syndrome Society in Spain ?

Heikki Taimio, dad to Liisa (6, del-) Finland

Subject: Re: VS: Speech in the Angelman syndrome

Hi! sorry for my poor Engilsh. No, she's not 19 month "years" old, she is only 16 month old, I'm sorry for my two mistakes. Ana was diagnosed 3 months ago and she is deletion positive. By now she doesn't have had any seizure disorder or any problems with feeding and sleeping although she has mental and physical delays. Thank you for your advice. What we really would like to know is if it is possible for a child with Angelman syndrome to get to speak and how. Also we would like to know as much as possible about your child and other children with the syndrome. Can they speak or say any words? When they started? How do you comunicate with them? What are the technics that you use to help them? No, there is not any A.S. Society in Spain.

Subject: Re: VS: Speech in the Angelman syndrome

Dear Alex,

My daughter Sara is 10 years old. Like many Angelman children, she has a few words that everyone can understand: mama, apple, up. She can shake her head no and nod yes. She does have other language, but only people who know her well can understand her speech.

Your Ana is very young. When Sara began making sounds, I tried to repeat the sound back to her. I try to say what I think she means when she grabs something or even looks strongly at something; I say, "You want the cookie" or whatever it is. I try to get her to nod her head--I ask her questions in a way that can be answered yes or no. If she does not answer even after a verbal prompt, I hold her head and move it for yes or no. She will correct me if I guess wrong!

I believe the most important thing is to pay attention to everything your daughter does to try to communicate, and to assume that everything your daughter does IS to try to communicate--a glance, a gesture, a sound--and as far as you can, respect what she is telling you.

My daughter has learned a lot from watching other children, both in person and on TV. She especially likes singing and dancing.

I hope this is helpful to you.

Martha Sprowles (mother of Sara, 10 yrs. old)

Subject: Communication

Martha recently wrote:

>>>>I believe the most important thing is to pay attention to everything your daughter does to try to communicate, and to assume that everything your daughter does IS to try to communicate--a glance, a gesture, a sound--and as far as you can, respect what she is telling you.<<<<

I SO agree, Martha...and now for my little communication story:

This past Saturday Ben and I went to our town's annual celebration day. It was great fun. Ben saw lots of old friends -- friends who had been in his class or teachers who knew him from school, plus lots of neighbors, and even our chiropractor.

There was food, tables of stuff, and multitudes of balloons. Ben would reach for every balloon in sight, so I told him, "We'll get you a balloon right before we go home."

Of course I didn't think much about it because balloons don't last all that long with him anyway, so we were on our way to the car when he gave me his saddest face:-( and started to cry. When I asked him if he felt sick he shook his head no. Then I remembered: "Do we need to go back to get you a balloon? I promised you, didn't I?" So sure enough, he stopped crying as we made our way back to get a balloon. With balloon in hand, he was surely the happiest Angel alive!!!!!

The point is: Moms sure are thick sometimes, aren't we?????????

Regards,

Jeanne, mom to Ben, AS, 9

Subject: Communication

Hi Everyone! Since joining this list several months ago I've learned many things and have tried 2 things with my 4 yr. old, John:I've become more attuned to his non-verbal communication and I've started to sign more . Friday we went to talk to a doctor who has been following John's development for a study he's in. When the dr. gave John a toy phone,he picked it up and put it to his ear!!!! You see,lately when we've been on the phone I've asked Grandma or my sister to talk to John which he LOVED! Now John will grab the phone when we use it. That's wonderful progress. Also,a few weeks ago he pushed a truck (that belonged to his brother) on the floor while scooting on his knees. My first thought was that he's done that with books and other "inappropriate" toys. Now I'm convinced it's imitative play. I'm excited about this progress. I'm becoming convinced that an inclusive setting with many appropriate modeling situations would benefit John. Sorry this is so long. But progress--even small --is exciting ,and I think that you understand that.

Patsy

Subject: VS: VS: Speech in the Angelman syndrome

Damaris Gelabert wrote:

What we really would like to know is if it is possible for a child with Angelman syndrome to get to speak and how. Also we would like to know as much as possible about your child and other children with the syndrome. Can they speak or say any words? When they started? How do you comunicate with them? What are the technics that you use to help them?

Hi Damaris,

In the literature on Angelman syndrome, some 20 words is the maximum number that Angelman persons, including adults, have been able to say. Most of them achieve much less, some like my daughter none at all. However, there are a few stories of more speech, even whole sentences, but that tends to be very irregular and uncertain. The first words may come at age 3-4, perhaps even earlier.

As far as communication goes, the starting point with AS children is always that they will never achieve many words. For methods, I refer to Martha Sprowles' recent letter, and to my first response to you. My daughter has over 200 signs at age 6, and she's learning more. I know two Angelman kids who at ages 12 and 14 had some 350 signs - the highest number I've seen referred to.

To learn about our kids as much as possible, please stay on line and read the messages. You might want to pose specific questions. I'm sure you understand that it would take me a lot of time to tell everything about my daughter. In the meantime, you should visit Harold Anderson's Web page, which has many of our earlier messages nicely reproduced. There is also a lot of information and links to other Angelman sites, like the ones created by Julie Hyman and Frank van Hof.

With Best Regards,

Heikki Taimio, dad to Liisa (6, del-) Finland

Subject: Re: RE:vs speech in AS

What wonderful speech ability -- I fully agree with you in the respect of never underestimating our children and never underestimating yourself and your ability. If we do not believe in our children it will become increasingly difficult for any one else to believe in them.

We have a communication device for Grace, an intro-talker, it is a 8 or 32 photo (your choice) device with a self recorded message or word - like - a photo of Grace swimming with the message of " I want to go swimming" a photo of Grace eating or taking a bath with the appropriate message etc.( I asked my son to record the messages and Grace loves to listen to him) Grace used the system off and on, although she seemed to be more interested in going for a more direct method. Like when she wants a bath, she goes down the hallway and gets into the bath tub. In one respect this is good and in other respects in is not very safe for her to do so. You should see the way she gets into the bath tub!!!!!! Let's just say that we have bars attached to the walls and she does not feel like using them at all times.

We do use simple sign language with Grace in conjunction with the intro-talker and just plain old following her around when she request us to do so. At 12 am, we can often find ourselves in the front yard watching the cars go by (which are few). Communication is very important, even though there can sometimes be a profound silence. If you find any ideas that are effective with trent, please share the news. And enjoy ---- always.

Suzanne Ewalt

Subject: RE:vs speech in AS

Hi everyone, I have been having a hard time just catching up with the mail I don't get as much free time as I would like to spend on this list. I felt that I should put my two cents in for what it is worth.

My son is 4 1/2yrs old and deletion positive. He is very verbal and has a vocabulary of 12 to 15 words. There are a number of more words I have heard him say and he has successfully said clearly but I have never heard again. He puts sentences together: for eg. "I want more bottle" or " I want Ma Ma". He definitely has problems with putting some consonants into a word more than once for eg."cookie" and "car" he seems to get stuck on the "c". He accomplished "car" once but it was physically dificult for him to say. He also seems to say a word more than once for eg. "down down" or "good good good". I haven't figured out why yet. He really makes himself understood at home and at school. We are working on incorporating sign as well but so far he prefers to vocalize. Cognatively he is capable of understanding close to everything we say. Yes there must be some mental delay but so much of my son's problems lie in the inability to transfere the messages from the brain to the muscles. There is so much we don't know about Angelman's Syndrome but we have to have faith in our children and never underestimate their abilities.

My son still drinks out of a bottle and is just now starting to take steps on his own. I still dress him and feed him. I guess speech is something I have worked hardest on feeling everything else will come in its own good time when Trent is ready to do it.

Bye for now, Coral Thompson mom of Trent 4 1/2 del +ve

Subject: Introtalker-Suzanne

Suzanne, Jennie used an Intro-talker for a while. Does this drive you crazy?? - in the middle of the night, it would very loudly remind us that it needed charging. It woke me and Jennie one too many times, so we got rid of it! Maybe ours was programmed to do that and all aren't. Janice Daley (Jennie 15+)

Subject: Re: Introtalker-Suzanne

Oh yes indeed ----- The Intro-talker would then be sent to the garage for the remainder of the night along with any other of her electronic toys that would act up during the night. I think that they were having a party all at one time and forgot to invite the family. It was a pain for sure !!!! and quite a surprise to awake to. Since that time I would make sure that I would recharge the battery on a every other day basis, this helped (as long as I remembered to do so). If not - Off to the garage for the night - once it was so loud that I put it in the washing machine to muffle the noise until morning.

Suzanne Ewalt

Subject: Re: Introtalker-Suzanne

The introtalker has been replaced by the alphatalker by the manufacturer. The new version doesn't have that annoying "time to charge me" reminder. It's also a little thinner and lighter-weight and the control panel is on top just above the choices area and easier to program. (It's covered up.) Oh, and it comes in brighter colors, too.

Marianne (Emily,6.11,del+)

Subject: Re: Introtalker-Suzanne

Cool - thanks, I will have to take a look at one - I am pleased to see that some of the equipment manufactures are being more creative with the color schemes when producing new items. I found a company by the name of "Leckey" who I purchased 5 items from do the fact of color scheme as well as the function of the piece of equipment. It is so nice to see a greater consideration from the manufacture - It is not like the equipment is inexpensive or anything......... It cost a small fortune.

Take care.

Suzanne

Subject: RE:Trent talking

Dear Heikki,Martha and Susan,

Thanks for the wonderful responses. Heikki in answer to your question about signing our speech therapist also said that signing first was the way to go because when the child does start to speak the words are clearer and they have a better handle on sentence construction. When we first thought of signing with Trent he had a lot of tremors and he also didn't like to bring his hands to midline. It therefore limited a lot of signs. Also although Bob and I have taken one signing course we are not fluent in sign. We just haven't worked on it but we have encouraged Trent's vocalization. Trent has made a lot of progress in speech because he has followed normal developement although a lot slower. Trent still gets very frustrated when he can't make himself understood. We are now starting to introduce sign at school and at home. The new speech therapist suggested we teach Trent the sign for potty although he says p..p..p when he has to urinate and p..p..p boop or bop when he has to move his bowels. This just confused Trent and he stopped telling us when he had to go. We stopped teaching him that sign and encouraged him to vocalize again. We are working on a couple of other signs. In answer to Martha's question about consonants and vowels. Trent can pronounce or use in a word b,d,g,c,s,w,h,L,m,n,p,r and all the vowels but he has some trouble putting some sounds together. When he tries to say cookie it comes out like "cooooooo" like he is stuck on the" oo" and unable to do another "c" sound. With car it was the same thing he said "caaaaaa-r" it was almost as if he was choking on the "a". Sometimes he just says a whole word or sentence spontaneously. Some eg. We were at school and he pointed to the door and said "outside". We were saying goodbye to the teachers and other kids and Trent said "goodbye". I wanted him to do something he did not want to do and after resisting for a while he just said "why". After I explained why it was important he did it. He will point to the Basement door and say "DaDa downstairs". i find a lot of delays in his responses for example when he wants more he will start to give me the glass or bottle and pull it back to his lips and it might not be until I am at the fridge that he will say " I want more bottle". I just know that cognitively Trent is capable of a conversation but he just can't always get the words out clearly. Sorry to be so long winded but I hope someone has possibly experienced the same thing.

Bye for now, Coral ( Mom of Trent 4 1/2 del +ve)

Subject: Re: Trent talking

Dear Coral,

I think Trent is astounding! Are you sure he has Angelman's? Don't tell him he's not supposed to be able to talk!!!

So much information that comes over this list seems to me to set the accepted picture of AS on its head. There is a remarkable range in functional abilities of our kids--or maybe not abilities, but functional *demonstrations* of ability--that I think lots of the diagnostic criteria should be scrapped and rewritten.

Without the volume of mail describing what seems to me to be remarkable achievements among lots of areas of function and lots of genetic configurations, it would be tempting to dismiss a child such as Trent as some sort of anomaly. But we are hearing from too many AS families about too many successes in too many different areas for ALL of these kids to be anomalies.

Your letters about Trent are to me the cherry on top of the sundae. I've been so very encouraged about my own child's prospects from hearing about successful inclusion, massive sign vocabularies, tricycle riding, etc., that I'm seeing her in an altogether new light. I hope that parents of very young AS kids, or kids who've not received much in the way of support from schools and therapists, or kids who seem to be more severely delayed, will take heart, too. I believe to the point of mania now that it is only a matter of finding the way to reach each kid, and progress can be made. I hope everyone will continue to report on what works in their families.

Your pal, Martha (mother of Sara, 10)

Subject: Re: vs. speech and AS

Coral,

Thank you for sharing that story about Trent's speech (we've discussed this before in Calgary, and privately). Regardless of the connections you and I tend to make as regards the real causes of the lack of speech, I wonder if you've seen it mentioned somewhere that signing should also help produce more speech. That's what we were told when Liisa still had no diagnosis and we were encouraged to learn to sign. I'm not really sure about the full reasons for this, but I understand that signing should reinforce thought processes which are necessary for speech as well. I guess all expressive communication would do so.

Liisa still has no words, although she has plenty of signs, but I don't think that proves anything.

Heikki Taimio, dad to Liisa (6, del-) Finland

Subject: Communication/pointing

Welcome Paula and Todd,

So glad you're here...recently you wrote:

>>>>>I want Brett to know he has choices and feel like his wants/needs/opinions are important but I'm not at all sure how to go about that at this point. We are working on nodding for yes right now. <<<<<<

Nodding for yes is a good start, but I wouldn't withhold things and wait for his response, as he may be responding but you may not know what his "answer" is (check his eye gaze which may be his way for now to tell you what his choice is). My AS son Ben does not always point consistently, only if it's a choice he's really interested in making.

I would start by at least giving Brett simple choices to make. An example might be showing him 3 different cereal boxes or choices for breakfast, and asking him which one he would like. You can also lightly do directed pointing by holding his arm at the elbow and pointing to each box. His arm will no doubt be strongest in one direction, and then you can say, "Ok, Brett, I see you want the Cheerios." Over time, he'll begin to understand and I bet you'll see him eventually pointing to what he wants.

Also, the ASL sign for "yes" is very easy. It's just shaking your closed fist up and down. I have always reinforced Ben's choices with this sign, and now he uses this for "yes" more often than his head. Of course, if he really wants something (like a cookie:-) not only his hand moves, but his entire body moves as a "yes." He really gets his point across that way:-) It's really funny!

Ben is older than Brett, too, so be patient...sometimes you think it's never going to happen, but one day it does!!

Take care,

Jeanne, mom to Ben, AS, 9

Subject: Re: AS kid learned to speak ?

Deanna and others,

Three weeks ago I posted about a rumor which claimed that an English AS kid had learned to speak as a result of the Kerland therapy. Today I have a letter signed by Phil Edge, Director of the Brainwave Centre (formerly known as The Kerland Foundation), which is located in Bridgewater, England (UK). In the following is an excerpt from that letter:

"You are correct in your assumption that we are familiar with Angelman Syndrome in that we have worked with a small number of such children. Whilst we have seen the children make various degrees of progress whilst following the programmes, including some children developing a small vocabulary, I think it would be exaggerating the situation to say that we have actually had a child who has 'learned to speak' in the true sense of the phrase, while attending the Centre. I cannot be sure about which individual case you are referring to but you will be aware that one of the common characteristics of the Syndrome is a severe speech limitation. Having said that, we have noticed some changes in vocal ability for children and in several cases have seen great improvements in physical co-ordination and gait analysis."

So much for that rumor, then.

The Kerland therapy has separated from the Doman therapy about which Kelly Hampton posted on 23rd September. It also starts from the principle that a child's brain injury can be healed by intensive therapy, which in their program means some 15 hours per week. The Brainwave Centre charges no fees for its therapy/assessments, as it is a charity which relies entirely on voluntary donations, also from the families. If anyone is interested, the address is

Brainwave, Centre for Rehabilitation and Development, Huntworth Gate, Bridgewater, Somerset, TA6 6LQ, England

Heikki Taimio, dad to Liisa (6, del-) Finland

Subject: AlphaTalker

Hi everyone,

I know a few of you have mentioned the AlphaTalker, and I'd like to get some more info on this for a school meeting coming up for Ben...who is the manufacturer? Is there an 800 #? I'd like to get a picture of it.

Also, if any of you have had good or bad experiences with it, could you let me know? Ben's communication program takes the "use everything" approach, with lots of signing throughout the day. I'm not sure if this would be appropriate or useful, but I'd like to explore the possibility a little.

Thanks in advance,

Jeanne, mom to Ben, AS, 9, and Alex, 13

Subject: Re: AlphaTalker

Jeanne: On the Alpha Talker do you have to help hold her hand to be able to focus the pointing or can she point and touch it herself? Does she make the choices that she really wants to make on it? ---KoKo

Subject: Re: AlphaTalker

Koko, She presses it herself about 20 percent of the time -- that's why we're only using six squares. Of that 20%, I think she chooses the phrase she really wants 30-50 %. When they were using it at circle time in her preschool two years ago, she was pressing "Emily" (her picture) very consistently and appropriately in that setting.

When we use it at home (not often, I have to admit) if I see her looking at the square she wants to choose, or if I know what her answer would be, I'll guide her to the right square. If she resists the hand-over-hand, then I push it for her. She does much better when I offer her a choice of pictures for some reason -- she grabs her choice nearly 100 percent of the time and I believe it's what she really wants about 80 percent. We're probably just not giving her enough practice on the AlphaTalker.

BTW, I've found that Emily accepts hand-over-hand guidance much better if the facilitator holds out her hand first and lets Emily take it. Then she just adjusts her hand to be in the right position. She does not like someone taking her hand first. A lot of times at school, the facilitator kneels directly behind her and holds Emily's elbow to guide her. (Works great with little bitty chairs and tables!) Marianne (Emily,6.11,del+)

Subject: Re: AlphaTalker

Jeanne, Emily uses an AlphaTalker, I'll have to look up the manufacturer's name and number for you. It's by the same company that made the IntroTalker (it's an updated version). It's smaller and comes in bright colors and is easy to program.

The benefits of having it is that 1) it provides a voice-output which increases the number of people who can understand her and allows her to actually "speak" and be heard 2) (the most important, we think) it's helping her build the skill of using a voice-output communication device so she can eventually (I hope) use a smaller device with a lot of communication choices; 3) it is flexible, in that you can program it for as little as two choices up to (I think) 32; 4)it's easy to program.

The biggest downside (to us, anyway) is that Emily's fine motor skills aren't developed enough to use more than 6 choices -- it requires better isolation of one finger to use the smaller windows. This means it has to be programmed with pretty generic phrases that can be used throughout the day in a variety of situations. Otherwise, you'd have to re-program it all the time, which is cumbersome and not at all spontaneous. Some of the phrases on her's are "I'd like to play"; "I'm finished"; "I'd like some more, please" -- this helps her since she has no easily understood expressive language yet, other than eye-gaze.

I agree with Dr. Calculator that it is just one part of a repetoire of communication strategies that we're trying to teach Emily. We're also using laminated pictures and signs. Because of your and everyone else's advice, we've increased the amount of signing we're doing to help build Emily's receptive skills in sign language.

Anyway, the only other negatives we've found are that it's a bit bulky to carry around with you (it's about 14 inches x 8 inches and about 4 inches deep) and the voice output has that "tape recorder" sound to it. If your school buys one for Ben, have a classmate about the same age record the messages. Also, I recommend you write in the IEP that Ben have access to it at home so that it will have credibility to him as a means to communicate. You'll have to say that doing this will support his communication-related IEP goals.

I'll try to remember to look up the number tonight and post it tomorrow. I hope this helps.

Marianne (Emily,6.11,del+)

Subject: Re: AlphaTalker

Jeanne Seltzer wrote:

Hi everyone,

I know a few of you have mentioned the AlphaTalker, and I'd like to get some more info on this for a school meeting coming up for Ben...who is the manufacturer? Is there an 800 #? I'd like to get a picture of it.

Jeanne, The manufacturer is Prentke Romich Co. Their # is 1-800-262-1984. good luck, Janice Daley (Jennie 16+)

Subject: Re: AlphaTalker

Jeanne, you might want to suggest to Ben's speech therapist to have a couple of reps from different companies come to school and demonstrate their equipment. . This would give you a chance to see what's being offered and what appeal they have to Ben. When I was looking at speech devices for Kolade this is how we went about it - the company reps were glad to come to school and it let us know right away if Kolade was going to respond to using the devices. I decided on the Zygo MaCaw similar to the Alpha Talker but Kolade did very well with this particular device (Now, I have the complaint that when he's home he won't shut up!!!! - there's no pleasing some parents, I guess!!). He loves the ability it gives him to communicate.

Regards.

Tammy Scott

Subject: Talkers

Hi,

I've been following the discussions about the Introtalker. We've been working on a talker with Shannon for about 1 1/2 years now, just now she is showing more interest in it and looking at it before she touches the buttons. Anyway, I didn't like the size of the Introtalker and I asked Shannon's Communication Therapist if there was anything smaller, and cheaper. We are now using a device called the 'Cheap Talk 4 Direct W/Jacks' This one has space for four pictures, there are other, bigger models for more advanced users. It doesn't seem to be as durable although Shannon is not able to throw so it is suiting us just fine. I see there is a sticker on the bottom giving an address and phone number,

Enabling Devices and Toys For Special Children, Inc. 385 Warburton Ave., Hastings-on-Hudson, NY 10706 (914) 478-0960

It's smaller, and therefore more portable, it runs on 4 AA batteries and it costs about $130.00 US. This may be an alternative that some of you may be interested in checking out.

Kathy Bromley Shannon, 3 1/2, del-

Subject: Talkers and Switches

Kathy, Janice, & Marianne,

Thank you so much for the info on the AlphaTalker, etc. I'm going to do some research regarding these...looks promising as Ben has recently become intrigued with the SEE N SAY toys as well as a Talking Big Bird...for the pictures do you use (or can you use) photos?

On a somewhat related note, I have two switches (one from Radio Shack and one is a Jelly Bean switch) that we have never used. Dr. Calculator is not really into these, and we got them before Ben understood cause and effect. If anyone would like these to use for practicing cause and effect let me know and I'll send them to you.

Regards,

Jeanne, mom to Ben, AS, 9, and Alex, 13 [seltzerfam@aol.com]