Need some ideas for functional communication

[ecki]

I'm very frustrated. Kayla is 4, has Autism and Down syndrome and has virtually NO functional communication. She's non-verbal, has a few signs but only uses them sporadically, and they are only using PECS during lunch and snack. If she's hungry or thirsty she just stands in the kitchen. If she's tired of walking she just does the stop and drop.

It hasn't been too much of a problem in the past because she was just in her own world of musical flashing toys, but now she's becoming older she's starting to have some behaviors probably associated with her lack of communication -- pushing, biting, hitting.

I talk to her speech therapist a few times a month and her ABA teacher every Saturday when she comes to the house. Her hippotherapist is even a speech therapist. Nothing seems to be working for Kayla regarding communication. They have tried to get her to imitate sounds, no luck. They have gone all the way back to doing pre-linguistic exercises, but I'm not exactly sure what that means. I asked about doing a formal PECS program, but they think she is going to talk soon, so they don't want to go that route (plus they don't think it's practical to have to carry a book of symbols around all the time). They try to teach Kayla signs but she won't use them. I'm so frustrated I'm in tears.

I was thinking about getting an independent speech evaluation, maybe someone new could have some ideas. But the advocate said that I had to disagree with the school's evaluation, which I don't really. I just disagree with the haphazard way they are implementing speech. She also only gets 1 individual and 3 group, which I don't think it's enough for her (I think she needs more individual). She is also in a completely nonverbal self-contained class, and I don't think that's good for her speech development either.

Any ideas about this would be appreciated!

 

[canadianmom2three]

I don't want to offend, because as a parent you have to do what works for you and your child, but as an autism consultant, I really have to advocate strongly for PECS. A lot of people say they are 'doing' PECS, and it isn't working, but more often than not, they are not doing it as per the PECS guidelines. Using PECS at mealtimes is a great way to practice, but if that is the only place they are being used, that is not "doing" PECS. The great thing about PECS is that they teach the communicative process, if done correctly and following the steps in the manual, the child learns that communication is valuable, and that is the first step to spoken communication. The key is really to follow the steps in the manual, and not move on until each phase is really mastered. It may be a bit of a pain for a child to carry around a PEC book, but there are lots of other alternatives, PECS can be carried in a small wallet, a fanny pac, on a bracelet, or programmed into a voice output device. The great thing about PECS is that they DON'T hinder verbal communication, they actually promote it by making communication motivating for the child, and through the continual pairing of verbal with picture exchange. The child is ultimately exposed more to spoken language as each exchange is an opprotunity for the other communicative partner to model what the child would say, if they were using their voice. In addition, in later phases, there is always a pause, to give the child opprotunity to use their own voice. Well, enough of a rave, ultimately you have to choose what works for you and your child, but I would encourage you to not dismiss PECS without looking into it further. I have attended several PECS training sessions, and Bondy and Frost (and all their associates) are very dynamic speakers and provide tons of great ideas to individualize the process for each child (ie. if the child is stuck because they don't understand that the small pictures represent actual objects that they could "ask" for, then you can try putting small pieces of the actual object into one of those little plastic containers that come from vending machines with a cheap necklace or whatever in them, that way the child sees the actual object yet can't access it without asking - which is later faded back as the child develops the ability to understand that the PECS are representing potential objects to be asked for). OK, I'll really stop now.....Best of luck finding something that will work for you and your daughter, functional communication, as you well know, is one of the most important skills we can give our children. Best of luck, your daughter looks like a real sweetie.

 

[ecki]

I really WANT the school to do PECS -- they don't want to do it 100% of the time.

One of the discrete trials they are doing is the teacher holds up an object and she is supposed to point to the corresponding PECS symbol. She won't do it in that setting. She'll often just slap at any picture to get the trial over with. She did OK with a toy horse, and a toy cat. Then they did a toy banana. Kayla got all confused. She doesn't WANT a banana, so she won't touch the PECS picture for it.

 

[bookwormde]

This is certainly not my area of special knowledge or experience. My thought process is based on logic and much of the “advice” and supports you are getting do not seem to be in a logical coordinated fashion.

If you are starting to see maladaptive behaviors I think you are right she is frustrated. If they really think she is close to verbal communication why do they have her in a non-verbal group and why are they not providing much more intense support? Visual is her preferred language so why not start there in whatever form. She does not need to carry around her visual dictionary; her support people do and just make it available to her when she needs it. If they cannot pick up that cue then they need to be better trained.

You know your child better than anyone so go with your feelings.

Like I said this is just an attempt to give you a logical analysis of what you describe (hard to do when you are living it).

Good luck

bookwormde

 

[KPeveler]

ecki, can you get an order to have them use PECS more? i am not sure how that all works?

also, it is clear that she can hear clearly? I know that a friend of mine had a child with downs and they didnt discover a hearing difficulty until she was like 3.... could it be that she is not hearing the instructions clearly and just gets confused and frustrated? i know that is a long shot, but i am just trying to think of something to help...

hope things get better!

 

[ecki]

Well, Kayla got tubes last May. I don't think she could hear well before that because as soon as she got them she started babbling more and became even more excited about her musical flashing toys. We went to the ENT last month and he said that there was a lot of wax buildup but didn't want to bother cleaning it out.

The most frustrating thing is that at age 2 Kayla used to have 50 words and a dozen signs. And then the autism hit and now we have absolutely nothing. I wonder if it's "in" there somewhere, but just can't get out. Down syndrome I can deal with. I really hate Autism.

 

[BeckyScott]

A couple of random thoughts-

Justin would not use standard PECS because they were line drawings, and therefore did not really represent the thing in question. He would only do photographs. This is consistant with him all-around, he reads a dictionary with photos, he prefers books with photos. Canadianmom's idea of using small toys would be the same approach. When we did Justin's PECS, the SLP took digital camera photos of the actual objects from around our house. A generic line drawing of a shoe was useless, a photo of his own shoes, now we're getting somewhere.

I am wondering if she can keyboard? Spell? She's young but kids with autism sometimes are ahead of the game with those things. That might be an avenue to investigate. It's not the same as speaking. But she might have a natural ability to read and spell, and you could use that to your advantage.

We've had to do that with Justin, sometimes. He is verbal, but his vocabulary exceeds his functional ability. And that kid can spell, it comes very naturally to him. Every once in a while he'll be saying something we don't understand. Repeat. Repeat. No. So we'll ask him to spell the word. Most of the time, he can. And when he does we can figure out what he's trying to say.

Get her on the computer, into a word processing program or some kids spelling game. You never know, and it won't hurt to try. If it works for her, there are so many handheld devices now where she could type and communicate. Even when she learns to speak, those skills will be valuable as she grows up.

 

[ecki]

I am wondering if she can keyboard? Spell? She's young but kids with autism sometimes are ahead of the game with those things. That might be an avenue to investigate. It's not the same as speaking. But she might have a natural ability to read and spell, and you could use that to your advantage.

Now that's interesting. Kayla has a V-Tech Alphabet Town toy and a V-Tech Phone that she figured out how to play all on her own! Both have a bunch of games (like find the letter or number) and when she's in the mood she can play the games exactly. Of course, never when I have the video camera around, so I'm sure all her therapists are nodding politely and rolling their eyes when I tell them this!

 

[BeckyScott]

Get her a picture dictionary! (now! to the store! do not pass go!)

They make them all different reading levels. Justin has the DK one, but he's 8, hmm, I guess he got it when he was about 5 though. It has photos with many of the entries, and has some pages that are grouped by theme. He's dragged it around so much it no longer has a cover on it. He'll sit on car rides for 2 hours just looking at it.

The PECS cards, have the word itself printed out below the picture. So she starts to associate the thing with those letters.

If she is headed that way, she might have the ability and just not the opportunity to learn more. I don't think it's that rare for kids with autism to be a grade level or two above on reading. I don't know how the Down's would play into that, though.

Kids with autism also have trouble, oh what's the word, taking one thing and applying it to a different situation. Which means, she can do the VTech game, but might not realize that it's more than just a game, that the information can be applied to other situations. Like she can spell Cat when the game tells her to. But not realize that those letters *mean* something in the rest of the universe and that if she spelled them out for you, you'd bring her a cat.

(okay, wierd example)

 

[belle&beast]

A couple of thoughts. I am a preschool SLP and work with kids with all types of language delays.

1. ITA with canadianmom reecs. I was trained in PECS 8 years ago and have found it to increase nonverbal children's verbal communication.

2. PECS has to be used with very motivating objects. Your DD may like snack, but if there is a favorite toy at choice time that she cannot live without, that is the motivator to speak. Sometimes we have to get creative and find things that are motivating enough to make a child want to communicate.

3. I have started using a Go Talk with a few of my kids rather than PECS. This is a very simple talking device and is motivating in itself because it speaks for them.

4. You may need to modify the PECS pictures and use real photographs. I agree that many kids with autism can read the words, but my experience with kids with DS is that they need the real photograph of the actual item in order to make the connection. This is going to be tricky when you have both to work with.

5. Reconvene your case conference and bring a parent advocate!!!! I have said before that I actually love working with advocates because they help both sides to be heard. Let them know that you feel her plan is not being implemented the way it should be and that you have concerns about her progress.

Best of luck and if you have any specific questions, feel free to send me a PM.

 

[Forevryoung]

And if real pictures confuse her, use TOBIs where you cut out around the picture so that it is the shape of the object (no background).

I agree with everyone else, if you see PECS as the way to go for now (until speech can be used in all settings) make some noise.

PS The Go Talk or something similar is a great suggestion however it's important to remember that it can be more limiting than PECS- only can say 4-12 things without someone changing an overlay

 

[Schmeck]

You also have to encourage her 100% to communicate at home the way you want her to - whatever they are using in school you need to use at home as well. That means spending a lot of time enforcing the communication you want her to be able to do - taking away the light up toys, the TV, etc, and spending the time 1:1 with her. Kids spend so much more of their time at home than at school, they need a home program from their parents as well as by their school.

 

[ecki]

Kids spend so much more of their time at home than at school, they need a home program from their parents as well as by their school.

Actually, it seems like Kayla's hardly home! She gets up at 6:30 and gets on the bus at 7:30. She doesn't come home until 4 and goes to bed at 7 or 8! So she's only awake at home 4 - 5 hours during the week and she goes to school year round! Throw in meals and baths and there's not a lot of 1 on 1 time (although we do a lot of "work" during meals and baths). Weekends she has at home ABA and her respite worker comes for a whole day. This is why I don't want to do my own thing -- it MUST be done in conjunction with the school since they work with her 1 on 1 much more.

On the plus side I spoke to the preschool director today. They are ditching the nonverbal self-contained class for next year. They realized it wasn't a very good idea. And we're going to have a team meeting to discuss what direction we're going to go before the IEP meeting.

I think Kayla would do well with Go Talk, thanks for the suggestion. I saw it in my Beyond Play catalog. It looks similar to her V-Tech Alphabet Town so I think she'll get the hang of it pretty quickly. I don't know if the preschool will go for it since she is only there for one more year and we can't afford the $200 to pay for it out of pocket (heck we wouldn't even be going to WDW if my inlaws weren't treating us and we wouldn't have the Maclaren stroller if it wasn't for a grant from our local ARC!).

 

[Forevryoung]

Actually, it seems like Kayla's hardly home! She gets up at 6:30 and gets on the bus at 7:30. She doesn't come home until 4 and goes to bed at 7 or 8! So she's only awake at home 4 - 5 hours during the week and she goes to school year round! Throw in meals and baths and there's not a lot of 1 on 1 time (although we do a lot of "work" during meals and baths). Weekends she has at home ABA and her respite worker comes for a whole day. This is why I don't want to do my own thing -- it MUST be done in conjunction with the school since they work with her 1 on 1 much more.

On the plus side I spoke to the preschool director today. They are ditching the nonverbal self-contained class for next year. They realized it wasn't a very good idea. And we're going to have a team meeting to discuss what direction we're going to go before the IEP meeting.

I think Kayla would do well with Go Talk, thanks for the suggestion. I saw it in my Beyond Play catalog. It looks similar to her V-Tech Alphabet Town so I think she'll get the hang of it pretty quickly. I don't know if the preschool will go for it since she is only there for one more year and we can't afford the $200 to pay for it out of pocket (heck we wouldn't even be going to WDW if my inlaws weren't treating us and we wouldn't have the Maclaren stroller if it wasn't for a grant from our local ARC!).

Preschool services can include aug communication- make sure it's written into the IEP! They have to provide a method of communication so that your daughter can succeed in school. If that means the go talker, that's what must be paid for by them (whoever provides your EI services, county I believe).

 

[belle&beast]

Actually, it seems like Kayla's hardly home! She gets up at 6:30 and gets on the bus at 7:30. She doesn't come home until 4 and goes to bed at 7 or 8! So she's only awake at home 4 - 5 hours during the week and she goes to school year round! Throw in meals and baths and there's not a lot of 1 on 1 time (although we do a lot of "work" during meals and baths). Weekends she has at home ABA and her respite worker comes for a whole day. This is why I don't want to do my own thing -- it MUST be done in conjunction with the school since they work with her 1 on 1 much more.

On the plus side I spoke to the preschool director today. They are ditching the nonverbal self-contained class for next year. They realized it wasn't a very good idea. And we're going to have a team meeting to discuss what direction we're going to go before the IEP meeting.

I think Kayla would do well with Go Talk, thanks for the suggestion. I saw it in my Beyond Play catalog. It looks similar to her V-Tech Alphabet Town so I think she'll get the hang of it pretty quickly. I don't know if the preschool will go for it since she is only there for one more year and we can't afford the $200 to pay for it out of pocket (heck we wouldn't even be going to WDW if my inlaws weren't treating us and we wouldn't have the Maclaren stroller if it wasn't for a grant from our local ARC!).

I'm glad they are willing to work with you. In my school system, as a provider, I just need to explain why we are trying an augmentative device (usually just a quick email) and they either have one to trial or purchase it for us. We do allow the parents to take them home and use them in different environments.

A PP said the Go Talk is limiting. Please be aware that this is just a stepping stone device and we always have to start small. I would never trial a very complicated (and expensive) device with a child so young and with someone who is just beginning to explore an augmentative system. Just keep in mind that it is a beginning and you will build communication based on what you find in these early trials.

 

[Ali]

I'm a Pre-K Special Ed teacher and I had an ASD non-verbal 3 year old student with limited signs due to having only one hand last year. HE had a PECS book with symbols he knew but couldn't make the transition to using them at school consistently. I have a very visual schedule oriented classroom and he could use those things but he just refused to use his book at schol. We tried a hip talker (has 5 slots for pictures/words associated with them) because he was so little to be carrying the Go-talk device. I wouldn't recommend a hip talker because you have to push really hard on the icon to get the sound to come out and it is a fanny pack for kids and many have sensory issues that make them want to get it off their body.

We then went to a GO-talk 25 which was the size of an 8 by 11 clipboard but 1.5 inches thick. I had to carry it around for him and move it in the classroom. It had 5 levels so we could have words for many situations throughout the day but he ony liked the food page. It didn't lead to any spontaneous speaking - just requesting.

Florida has a resource borrowing thing for schools to try out new devices before they buy them to make sure they are going to work, and no one has ever mentioned a cost to a parent, just get the head of Speech and or augmentative commnunications involved.

I am impressed with all of the services you are getting for your child - in Florida there is minimal if any respite care, maybe an hour a month if you are lucky and can find someone willing to do the work. There are almost no one to one aides in pre-k, and only the really large districts have specialized classrooms for pre-k, most are varying exceptionalities like mine.

So, all in all I'd say you are getting a lot more than my kids get here. But, as a mom to an ASD kid who brought advocates to all IEP meetings, I'd say that if you are un happy with the speech groups then do something about it. I am very unhappy with Speech this yearcbecause my whole class is in one group. No individual time at all, and the kids aren't progressing in anything other than gaining waiting time practice and being able to pick up a picture card.

Good luck.