PECS--anyone using it? ST recommends it.

[Mayzoo]

My daughter (5.5 yrs) is making steady progress verbally (she is still way behind-- talks at about 24 mo or so) but making progress and enjoying the benefits of it. DD is receptively normal or above age level.

Her ST is (hmm political terms here) using our daughter's case as a way to break herself in on the PECS system (ST is learning now). I am an easy to work with parent who can master these tasks well, and sweetie is a sharp cookie so she picks this up well, but I worry the PECS system will possibly inhibit her verbal growth, or cause a bit of regression.

PECS system is the system of using pictures to get what you want instead of words--ST says this will lead to more verbal confidence and ability.....but I am not fully convinced yet. See this link if you are curious: http://www.pecs.com/Research.htm.

Anyone try it yet? Does the child's speech improve or stall out? Any words of wisdom here? I have very high expectations that if we stick with speech only therapy she will continue to improve....but it is a slow process.

Thanks-------

[LIZARD]

I would use PECS in much the same way as speech is used with Total Communication in teaching the deaf, as a reinforcer. IOW, use it in conjunction with intensive speech therapy.

Incidentally, Drew has this same problem. His communication has improved since his change of school placement only 3 1/2 weeks ago, when it was made understood that intensive language/communication instruction needed to be the greatest part of his SPED curriculum. I think many of our kids who have ACM with autism have this issue with communication, too. (Keg?? Any thoughts on this??)


LIZARD :)

[Kristen (ColeysMom)]

Hi Mary,

a little background before I say my piece: Coley began getting ST services at about 15mos as he was not progressing in his babbling, he was stuck with just a few 2 letter sounds (da, la, ah, etc). He would repeat these ALL day in a sing-song way or he would screech. Beyond actual vocal skills, on the communication front he was not reacting properly to facial expressions, not making facial expressions, not paying attention to conversations (showing no interest), not taking turns, etc. I'm sure all the familiar stuff...but I guess the difference is that he was already in therapy due to his premature status so they reacted immediately...

The SLP came in 1x/week to do all sorts of stuff: peek-a-boo, rolling a ball back & forth, repeating actions/sounds with objects, etc. All this was to get the connection that there are other ways to 'communicate' beyond vocal noises. This made sense to me and I could see how it would assist the development.

After a couple months with virtually NO progress the SLP urged us to consider sign language. With all of the same perspective or purpose in mind, communication...not speech. Saddly this went on for, gosh...6+ mos with no progress beyond "all-done." And he wasn't even doing that correctly. I was scared out of my mind...but kept telling myself, he's not 2 yet (well adjusted he wasn't..actually he was about that) so no worries...

During that time the SLP started to bring in picture boards & such. Took pictures of his favorite objects and parts of his life...his bed/crib, the changing table, the fridge, the high chair, his sippy cups (which were all different depending on the contents), toys, sand box, etc. I didn't think much about this, but was appreciative when he was clearly frustrated and I could flash pictures at him and he could 'communicate' with me by pointing. He never did initiate anything...it would be one of those terrible moments where I wanted to cry because I couldn't understand him. They often told me that he likely didn't know what he wanted/needed either. The pictures helped with that!

Just before he was 2 we were also referred over to a communications specialist at CHOB. This is when I REALLY started getting nervous. We were beginning to look into much more advanced modes of communication. His expressive language was still nil...but what I didn't know at the time was that the SLP was able to 'rank' his receptive language through those pictures. This turned out to be a HUGE thing for him.

All the while, nervous about what was to come with his development/ability as well as our future I questioned all these 'other' communication techniques.

Well, before we got in to see the communication specialist we saw the neuro who found the seizure activity...first telling me that the sing-song sounds were a big sign of that, which freaked me out because that was his 'ability' to date (in my mind) and then he goes and steals that away by telling me it was a big warning sign of problems...UGH! Then he tells us that his speech center is virtually inactive and he may NEVER speak or even be able to communicate! I was devestated, but suddenly all those 'other' means to communicate took on a new light..."one has to work - let's get on with it!"

Miraculously, the anti-convulsants changed all that. He began speaking, immediately. I have no other words to describe it. Within 3 weeks he had 70 words..big words too...not only "car", "bus", "mom", "dad"...but words like 'compressor" "kitty-cat" "fridg-a-frator" etc. It was CRAZY! By the time we made it to the communication specialist (3 months later) he was saying "numatic-drill" "pile-driver" and 500 other words...I promise you I am NOT exaggerating.

Ok...so we contemplated cancelling that appointment, but the SLP urged us not to. We went, she along with us...the bottom line was that all those things we were doing that precipitated his speech helped his receptive language more than anything...Coley's particular problem seemed to be 'apraxia'...amoung other things...his ability to coordinate the task to communicate...but that he was understanding everything else...clearly all the construction talk that DH did when he got home from work...this also told us something else...he was particularly interested in what Daddy was doing...a KEY piece of information.

We still had lots to do to help him over the next year or so...he often would revert back into frustration mode...well, those pictures came out OFTEN! Schedule boards, flash cards...you name it! Just make sure YOU talk while you use them, and urge her to try also.

Oh...when we met with the specialist @ CHOB, she didn't just say...thanks for coming in, you don't need us...she did take a good look at where he was at in his communication abilities...the big picture, not just his words...because of course saying words isn't even enough... Our SLP came with us and they went to town discussing Coley's status and his needs...by the time we left she had recommended a few other 'tools' too...funny now that I think abou it, they were pictures too. The coolest thing we used was this talking photo-album

http://www.gadgetgrid.com/2007/11/23/talking-photo-album/

Inside that we put some fun, but also some functional pictures. And rather than just say something like "snack table" we would take a picture of Coley snacking and record something like: "Coley is hungry" as time when on we would advance that statement to "Coley wants a snack" or whatever...

So I guess my point is, although it seems in one way these things can inhibit proper development...uttering words is just a small fraction of the entire 'skill' to communicate...and every little thing that she can do to bolster that will only help her for when she is able to 'speak' better.

And, as a completely unsolicited piece of advice, get into to see one of those communication specialists...they are UNBELIEVABLE!

I guess I'm feeling chatty today...not sure I needed a novel to say that...but hopefully it helps...

Good luck!!!!

KJ

[frogmama]

Every child is different (duh, right?:rolleyes: ) so what works for one child will be a detriment to another. And the way something works may be completely different. That said, Mattew used (and still does to some extent) PECS in some form since he was a baby. The formal "book" didn't come until about 2nd grade though. For him the word under the picture is actually more important, his spontaneous speech is usually slurred/unintelligable, but when he can look at the word before he says it it comes out nearly crystal clear! He is using a different neural pathway, sort of like a stutterer can sing words they can't say. Now he uses a small computer to type words/sentences before he reads them out loud. I decided long ago the COMMUNICATION was more important than speech, and I've had to argue the point many times with teachers and ST's.

[Mayzoo]

I REALLY appreciate all the input--she is frustrated at times...but calms mostly when we let her take our finger and "show us what you want honey"--she takes us to what she is trying to ask for.

I am willing to give this option a good run, with the hopes it builds vocabulary, since she is a smart kiddo who can speak when she can get the words from her brain to her mouth. That connection is "blocked" more some days than others. I guess like all kids she has good days and bad days--the autism just swings that pendulum further each direction.

Any more stories that people feel like sharing would help me feel better about this.....when I think of PECS for some reason I think of totally non-verbal kids, finding a resource to communicate that does not involve speech. My issue to overcome I suppose. I am looking to her future, and knowing she can't hold down a job, marriage, and kids using the PECS program. I know she may never have any of the above listed items either, but my goal is to make that as much an option as possible.

My attitude is changing as I read your success stories.... :) thanks again

[Mother's Heart]

you should read the PECS info that explains the foundation for the system...why it works and how it works....and how often it actually facilitates speech rather than deters it.

Same thing often happens with sign language, and sometimes too with facilitated communication---verbal speech is stimulated by the use of the augmentative system.

FC----I'm all for this now....of course...since it has absolutely turned our world around! I wish I'd pursued this option much earlier. I can't even begin to imagine where we'd be now if we had. wow. I'm in the process this morning of setting up a new augm device and also of trying to get enrolled in training sessions at Syracuse. http://thefci.syr.edu/Index.html Your mention of apraxia being a big issue makes me think that FC or PECS could be a real benefit for your dd.

we used PECS but not properly, so I can't offer a personal success or failure story, except to say that the principle is sound and perhaps to urge that you give the program protocol a chance by following it as it designed to be done.

[Kristen (ColeysMom)]

Mary, I felt much the same way...I guess that was what I was trying to say mostly in my novel...I felt like the alternative methods of communicating where being used or suggested because the SLPs and Drs had lost hope of him using words.

Vocabulary is a tricky thing...that's what I learned ...it's one of his favorite things now, and I have my suspicions that it's all about how hard it was for him to use it back then...but that aside, words don't mean anything without the ability to 'communicate' and not just uttering the correct sounds in the correct sequence to form an intentional word...but being able to USE them correctly...and I think that was the biggest lesson I learned from our journey...

Abd she can have an extraordinary vocabulary now...you may just not be able to hear her express it, ya know?

Really everything you do with her has a communication element, you really can't go wrong...but what you can do is use some of those techniques to build foundation in a purposeful way...and even though this is what his therapists were saying to me, I didn't really 'get-it' until he showed us how much all that we were doing 'added-up' ... there was just that one missing piece for us (due to the apraxia) and if it weren't for the neuro who knows where we'd be today...it's like a puzzle and once all the pieces line up...you'll see too.

Options was another thing that helped a lot, and probably part of our issue today :eek: ---CRIKIE he thinks everything is a negotiation---

Anyhoo...even when he would tell us when he wanted somehting, say a snack or to play using the pictures, we would repeat it to him first...

"Oh, you would like to have a snack, is that what you are telling Mommy?"

And wouldn't move until he responsed, a nod or a "ya"...soem form of acknowledgement.

Then ask "Ok, what would you like for a snack" no pictures here... "would you like crackers or would you like soup" (or whatever) and then it was up to him to somehow tell me...even if it was only a nod...there were no pictures...ya know? Because even a glimmer in the eye is communication.

And then reinforce...good job telling me, by showing me those big brown eyes of yours...or whatever...

And oh, that reminds me...I couldn't "hear" him if he didn't look at me... Not sure if that's an issue for you guys or not, but eye connect, and even directing 'communication' toward us was a BIG problem. He would do stuff like walk out of the room that we were in, go to the empty/dark kitchen and scream at the fridge. It was like he wanted the fridge to whip him up a snack. So if he was attempting to communicate, but didnt' direct it toward us, our response was "I'm sorry Coley, I can't hear you" or " I don't understand"... Often this would get him more frustrated before things got better...but he had to learn that prt of communication was directing it toward a specific person too...

Bla Bla...man I'm a motor mouth today...my point: Just sorta use them as 'topic starters' I guess... Not a full 'conversation' or as a replacement for speech, more of a tool to facilatate it, ya know?

Does that help?

If I think of any thing else, I'll post...but for now I can't stress enough how helpful that talking photo album was...you could really use that to help her express herself when she's having a hard time...

[JungleWoman]

After a couple months with virtually NO progress the SLP urged us to consider sign language. With all of the same perspective or purpose in mind, communication...not speech. Saddly this went on for, gosh...6+ mos with no progress beyond "all-done."

Aaron had the same thing happen. He only did all done for a long time. He even dropped that eventually and made his own modified 'eat' sign, which he still does.

We worked with sign language for a year and nothing. The place we went was about as useful as a tin tack in a jock strap too-- they accused us of not working with him at all because he showed ZERO progress the entire time he was there. (Maybe it was because they were overly objective and didnt like to touch him or be nice to him enough for him to perform for them!)

We have tried PECS for 4 years. He is JUST NOW getting it. I have a whole box of them. It was like an overnight thing with him. He just SUDDENLY got it. His teachers had been trying SO hard for him to just ask for a cracker or grapes forever and finally boom, there it was. One day he REALLY wanted peanut butter so he walked over to a box and sifted thru the box and handed his OT the picture-- MUCH to their surprise!

When we use it, we of course, talk to him and say "Grapes" or "Burrito" or whatever it is when he asks for it and he is trying to annunciate some things.

I was SO ready to give PECs up--- I mean seriously FOUR years of this kid not getting it and then the Hallelujia choir suddenly sings!

I think it is worth it to try. Hopefully your little one doesnt take as long as mine!!

[Mother's Heart]

We have tried PECS for 4 years. He is JUST NOW getting it. I have a whole box of them. It was like an overnight thing with him. He just SUDDENLY got it. His teachers had been trying SO hard for him to just ask for a cracker or grapes forever and finally boom, there it was. One day he REALLY wanted peanut butter so he walked over to a box and sifted thru the box and handed his OT the picture-- MUCH to their surprise!

When we use it, we of course, talk to him and say "Grapes" or "Burrito" or whatever it is when he asks for it and he is trying to annunciate some things.

I was SO ready to give PECs up--- I mean seriously FOUR years of this kid not getting it and then the Hallelujia choir suddenly sings!

I have seen this in so many things we've done. Months or years of persistent effort with no visible progress then "click!" there it is...and it's time to fly with it. Would those tactics have benefitted him if they were not worked at for 4 yrs first? or would they have benefitted him anyway if they had just been inititiated at that magic time? who knows? I think every thing done through out the years builds a sort of foundation, giving the kid a repertoire of abilities to stand on when it's time for them to leap forward. so....don't try it and give up after a few weeks....a new slp might be tempted to write him off too quickly if the can't document progrss....be patient, consistent, persistent, and---- weird....i blanked on my own motto. oh well, it'll com to this old brain some day. sigh.

[matika]

With Rachel, since she was in early intervention school, the autism consultant insisted on using Pecs, saying that it does not interfeer with verbal improvement, but it aids.
I decided at home to use them for a while, it helped me I think more then her, to get over some of the communication frustration, but finally opted not to use them, because I felt she was more then capable to learn, and I felt that putting some preasure on her was ok to do so, especially since at school they used pecs.

Now 4 years later, school uses specs for her schedule, and some for her more frustrated times, but I haven't used them at home for a good 3 years. Even my son has his own pecs schedule at school, it has done wonders for him, and he is very verbal.

I say it won't interfeer with verbal development if you don't give up on him. Pecs can only help, especially when there is those times of frustration and anxiety due to lack of finding the words on demand.

So I give it a thumbs up? ;) You can always remove them if things are going backwards or not forward at all.

beky

[matika]

........ we saw the neuro who found the seizure activity...first telling me that the sing-song sounds were a big sign of that....




Rachel has done that since a baby, sing song, humming, and she would humm and get worse and raise her humm level until it droves us insane, and a times she would look up and her eyes would squint (is that a word? :p ) and she would zone out while doing this. I have mentioned this to many many many times to all the doctors and specialist she has seen by, no one has ever ever mentioned anything about that been a sign of seizure, that just makes me wonder if she has them..

With that said, we had a sleep deprived EEG done on her today. I think it was a waste of time because she did not fall asleep, and just as she was actually rolling over and getting confy, the technician gave up on her and turned on the lights,, all the drive, all a day off, and I suppose they where not able to find anything, we shall see in a week I guess I will hear from the dev pediatrician.

Next month we have a getting aquainted appointment with our new family doctor, and she had 4 years of neurollogy studies so I hope she can give us some help on the matter because I don't know what else to do no more, there is something going on with my daughter, she is very capable of communication because she has done it at times, but something is getting on the way of it.

Ok enough of that, I am napin this thread :p

beky

[Mayzoo]

I bought the book and a starter pack of 96 words. I will add words that we need in there. I hope the book gets here for her next appt.

Thanks for all the replies. It has helped.

I have done research on PECS, and have the disc about it too......but I wanted real stories to back up what they say in the research. So thanks.

[JungleWoman]

Aaron's school asked us what foods he likes and they made them all up for us and told us whatever else we need or whatever gets broken *lol* they'll make them. And they laminated them and put magnets on all the backs of them so we can put them on the fridge.

Is your kiddo's ST independent or part of the school district? I would imagine they'd furnish them for you if she/he was part of the district. Maybe mine just was being nice ???

[Mayzoo]

We have to do everything through our private insurance, because her school district is unreasonable in their demands, and I don't have the time to take them to court (my only option according to Texas Scottish Rite legal Department--they fought with the school district for me for a while). The school district has said I must drop her off at the gate, pick her up at the gate, I am not allowed to meet the teacher, see the classroom, watch any interaction, or even know if the floor is carpeted.

Naturally, I am homeschooling her, and she cannot receive services from the school unless I allow them access to her alone for them to "test her". She will not do well--if not melt down--if I left her alone with these people, and I just won't do it. I see nothing but red flags in every contact I have had with our school district, and all the people I talk too from this area that know my daughter say it would be a mistake to place her in this district. In another district I might be able to allow her to receive benefits, but as long as we are in this district it is our priority to continue to pay for the insurance, and the independent OT/ST.

Our ST is willing to help me make the cards, and she is still trying to learn this system as well so her company is willing to subsidize some of my costs for PECS if I ask them too.

[JungleWoman]

OMG!! That is HORRENDOUS!! I cant even comprehend that!

Im innundated with emails from my son's school about coming to class to play with the kids and to do this and that with them--- thats so horrible that your district is so unreasonable and they're getting away with it!!

(((((hugs)))))

You are such a good mama for homeschooling your sweetie!!

[Kristen (ColeysMom)]

Rachel has done that since a baby, sing song, humming, and she would humm and get worse and raise her humm level until it droves us insane, and a times she would look up and her eyes would squint (is that a word? :p ) and she would zone out while doing this. I have mentioned this to many many many times to all the doctors and specialist she has seen by, no one has ever ever mentioned anything about that been a sign of seizure, that just makes me wonder if she has them...

Beky, I just want to make sure it's clear, because I don't want to give the wrong impression OR get you worried unnecessarily...

What Coley did was actually NOT annoying...I rather liked it. In the beginning the SLP suggested it was how he 'practiced' his sounds...much like a baby does. La-la-la-la ba-ba-ba-ba...very monotone.

As time went on it did not expand to many more sounds, infact perhaps the opposite happened now that I think about it. He may have had a wider range of 'sounds' as a babbling infant, but then as a toddler had only a handful.

The difference was that he added tune to it. It sounded to me that he was humming or singing while he 'worked' ... He was very fixated, really obesessing over something, say his cars, and while he was 'making a parking lot' or a 'parade' or a 'traffic-jam' (ok I was trying to justify EVERYTHING) he was doing stuff like repeating: dum-dum-dum-dum, but with a rythem to it...a simple one, but enough of one that it was almost nice to listen to...well I did enjoy it, it was the only time I heard his voice not screeching, so that could have been a part of it...but it was NOT annoying.

What the neuro said was that he was trying to make a connection, but was stuck...that it was like a 'skipping record' ... like if he was walking down the stairs he may do something like da-da-da-da....and really what he was trying to do was say down down down down, but in his efforts he would only be able to alternate the tone of the 'word'...

So basically getting 'stuck' is a clue that something is preventing the connections from being made...generally that is irratic or inappropriate brainwave activity...although there could also be other (neuro) reasons to, like damage from a stroke or something...and I'm sure that there are lots of other reasons too.

So it's good that you had the EEG. BUT, bare in mind that unless there is an 'event' during that EEG, the interpretation of the results will vary depending on the tech reading them.

Ok, first I should say that it could come out completely normal and any tech would interpret it that way...

BUT...it could also come out abnormal, and in a wide variety of ways...I'm not an expert, really the best place for you to discuss the results is on the child neuro or epilepsy boards...but that aside for a second, this is what I want you to keep in mind when you are talking to the tech or whomever about the results...

Coley's BEAM (a more comprehensive EEG) study did NOT reveal a seizure. What it did reveal was irratic activity (spikes and waves), an almost inactive speech center, and an overall immature pattern. Combined, this suggested that Coley had a history of seizures. Add that to his clinical picture and the neuro felt confident that the tech made the right conclusion...but to be 'sure' he felt we should start anti-convulsants to look for improvement in his clinical status.

Now, reason I say I want you to bare this in mind, is because I've talked to a number of moms that have had similar 'results' but a very different 'conclusion' from the tech, and as a result a very different treatment plan. Course I am no neuro, and I obviously don't know ALL the details...but that EEG is like any other lab test, if you are not comfortable with the interpretation, you have EVERY right to bring it to another for a second opinion. Or simply go to another neuro....

That zoning out is DEFINATLEY a sign of absent seizures too...I think you do have enough to warrent a full asessment by a good neuro...keep pushing if you need to.

Ok, now, one other thing...something else I learned was that there are lots of (known) reasons for seizure activity. A good number of them being caused by controllable triggers (like food or chemicals or allergens, etc), and there are many where an underlying condition or syndrome is the problem, and once that condition is controlled...the seizure activity is as well. But there are also many cases where the cause is NOT known....this is generally where an epilepsy diag is given. In any case, if the seizures cannot be controlled by treating the 'condition' or avoidance of the 'trigger' then meds are given...

A neuro is not fully capable of exploring all the triggers. Their first reaction is to prescribe anti-convulsants. Which is good and bad...on one hand the goal, particularly with a developing mind is to calm it down to allow proper learning (ie connections). On the bad side, it implies this is the end of the story...it is not! The cause of the seizures still should be investigated, which means seeing more Drs...edocronologists, allergists, GIs, metabolic specialists, etc.

Ok, that's my soapbox lecture for the day...hope it helped! And hope the EEG gives some good information to help Rachel!!!!!!!!!

Crossing everything for a GIANT Christmas present for you guys!!!

Please let us know what happens! And don't feel like you can't call to nag for the results...they actually only take a day or two...there is NO need for you to be pacing during the holidays!!!

In my thoughts!!!!!
KJ

[matika]

When I was working with the kids and Pecs, I also got offer from the early intervention school, they would make them and laminate them for me. They even would let me go in there, make them and laminate them at no cost, I had a good relationship with them.

I however had a subscription to 'make a schedule' from do2learn.

Here is the link,, is a one year subscription and you can print and work with that all you want in one year. I would buy the clear packaging tape, and laminate them with that, very easy and cheap, or you can buy the clear, vinyl contact rolls of shelf protectant they sell at the stores, but, tape worked just fine for us.

here is the link, you can even print some freebies from their website, but only black and white, if you want the color ones you have to either color them yourself, or pay the annual fee.

Hope it comes handy

http://www.do2learn.com/subscription/product_details/masonline.php

[matika]

KJ. Thanks for your info on the seizure thing.
I am very sure she has them, I had mentioned the aid to keep an eye on her, and two of them noticed this.
I think if the EEG comes out inconclusive, or don't show any seizure, I will have them do something else.
I do think a neurological evaluation should be done, not only on Rachel, but Joshua as well, as he tends to space out badly, bless his heart.

Just taking it one thing at the time here.

Oh yes we will be having a wonderfull Christmas. I can't wait :), been decorating all this weekend and just got home from the store with yet, more ornaments :D

Hope your family does have an awsome Christmas as well, everyone in the forum, hope you have time to spend with those you love in the best way :)

Blessings.

beky

[Kristen (ColeysMom)]

You can get a pretty cheap laminator at staples or office max, and make your own too.

We took pictures and cut things out of magazines...and that took care of most things.

The harder ones are things like 'all done' and 'more' and things like that. For those the easiest thing is to get the SLP to make them for you, or buy them.

GOOD LUCK!!!

[Mother's Heart]

and if you have a funding source (about 300.00) you can get Boardmaker software from Johnson-Mayer. print your own.

[Mayzoo]

I am getting more excited with each positive response--my sweetie does talk, she does not independently engage much other than the I want stuff. I do believe with all my heart that what she has to say is very important, no matter how she "says it" and I hope to unlock some of her potential in communication with this system or any other we may try.

When she was a baby we used baby signs from birth, before we ever knew there was a problem. She picked that up quite well, and she has picked up the basic rules of PECS faster than her ST and I did :rolleyes: (ST is in training for this program--she has had all the pertinent courses, but feels my daughter is a perfect first pupil since she is so bright, and I am a patient educated parent willing to try most any avenue). Sad to say most our ST's other clients are a bit apathetic or slow to see the benefits of helping their children now, versus launching them into society unable to cope with its demands. They want the ST to "fix" their kiddo. I am very proactive, and am already looking at the interpersonal aspects that a communication problem will cause my daughter in her adulthood--job, marriage, her own children etc..... I want to give her the best chance at doing everything she will want to do as an adult...which means lots of work now--but big payoffs for her later!!!

Thank you so much to all who have contributed to this thread....first hand stories are so much better than just reading the research. I work in the medical field, and know how those research articles can be written with a marketing slant.