To PECS or not to PECS...

[ErinYay]

Real quick: DD just turned 2. DH and I have had concerns about her development since she was about 6-months. She was found to have a moderate speech delay and a severe social delay by EI, and we'll be seeing a neurologist (hopefully) soon to see what's going on. Apraxia and ASDs are both on the radar. She'll be starting speech therapy, 1 hour a week, through EI before the first week in January is out.

She has words but has trouble using them meaningfully. She will label everything but doesn't put 2 or more words together to ask for something (well, she said "more juice" *once*. It was awesome.) She only last week started saying the word "no," but doesn't really get what it means. (She understands when she is told "no," though.) She used to have "yes," but no longer. She doesn't nod or shake her head, and her pointing is iffy.

QUESTION:

Should we drop $150 on the PECS Starter Kit *now*? 

She *wants* to communicate, but, for whatever reason, has a really hard time forming the words. We've started signing a bit, but she has a really, really tricky time getting her hands to do what she wants, even with lots of hand-over-hand. I think she'd pick up PECS more quickly and with less stress than signing- so many signs involve the face and she's reluctant to look at me of her own volition and even less happy to do it when I'm showing her a sign.

If you had the cash and a similar kiddo, would you just go ahead and get the kit and start phase I, or would you wait and see what the SLP wants to do? 

Thanks!!!

[ErinYay]

Oh- I plan on doing as much signing as she'll tolerate. *I* pick up signs very easily so it's fun for me, but DH works so much and doesn't really have the time to learn ASL. I don't think she needs an "either/or" situation. (And we have all like 70 million Signing Times DVDs, which are awesome.)

[cristeen]

She sounds a lot like my ASD kiddo.  We've been doing sign with him since 4 mos and he still doesn't/can't sign more than a few words at 27 mos.  He loves the Signing Time DVDs, and will even ask for them, but doesn't actually sign (he clearly understands me when I sign though). 

Don't know what PECS is, so can't speak for that. 

[ErinYay]

PECS is so cooooooool, even though it's ABA thing (I mean, there's a need for ABA for some kids, but the dog trainer in me just gets kind of a skin-crawly feeling from what's essentially clicker-training children...).

Pretty much, PECS is the Picture Exchange Communication System, where the kiddo has cards with pictures on them that he/she must trade with another person to get what she/he wants.

So, if your kid wants a cookie, he gives you the "cookie" picture card and you give him a cookie. There's a *lot* more to it than that, but it's really fairly intuitive, it seems.

DD has motor planning issues, or is otherwise just not coordinated enough to use just sign, so I think this will work well. My SLP-in-training buddy suggested we wait the 2 weeks until we meet with her SLP, just to see what she thinks. My friend is of the school that thinks PECS is primarily for totally non-verbal kids, so we'll see if the SLP thinks V would be a good candidate as a verbal-but-not-so-meaningfully kid.

You might want to look into it! There have only been small studies done thus far, but it seems to be a very useful tool kids who may have apraxia of the limbs or dyspraxia, and for ASD kids. Here's the wiki on PECS. If you're interested, just googling "PECS faq" or some such yields a lot of info!

[cristeen]

Ok.  There's a few iPad apps that do something similar that I've been looking at.  We start ABA after the New Year, so we'll see what the therapists suggest for him.  He's extremely into the iPad, so that would probably be easier for him. 

[KCMichigan]

Originally Posted by cristeen 

Ok.  There's a few iPad apps that do something similar that I've been looking at.  We start ABA after the New Year, so we'll see what the therapists suggest for him.  He's extremely into the iPad, so that would probably be easier for him. 

Yes, if you have an IPAD- I would look into Proloque to Go. It is fabulous and easier than PECS, as well as can 'say' the communication outloud, which not only reinforces verbal learning, but also makes it more interactive with new people/community.

Many ASD kiddos really respond well to techology, and the IPad is big enough and adaptable enough that some motor planning concerns can be adapted to (offer anywhere from 2 to 10 choices). It is also a lot less cumbersome than PECS.

[FarmerBeth]

The PECS sounds cool.  How is your daughter at acting out, pointing to, fetching things, etc, to tell you stuff?  My younger son with what is diagnosed as an expressive language disorder came up with ingenious ways to show me what he needed, and had few words like your daughter.  It became sort of a personal sign language, and got us through the rough spots.

[jenrose]

I dont' care if my kid communicates using semaphore as long as she communicates. We've done PECS, though I will say it's actually more useful at home to simply have a ton of plastic versions of food or whatnot, she brings us the plastic version and we bring her the real one. 

One thing you said raised a flag for me... the acquiring and losing language bit. Has she been tested for mitochondrial disorders? Because my daughter stopped losing language when we started treating her as if she had mito (she has a chromosome disorder that interferes with some mitochondrial processes, and treating the deficiency, in her case, of CoQ10, was essential to her language development.) You can google and see if any of the other signs and symptoms ring a bell.

[ErinYay]

jenrose- thanks for your reply!

She's not yet been tested for anything- I was kind of assuming she'd be tested as we go on- while I can't imagine something like Fragile X is going on, my family has a *lot* of really weird genetics and some really wonky kids, so that's something we'll be doing as we go.

Thinking about it, I'm not sure that we've really thought of her as regressing. I mean, she babbles more now than she ever has, but she didn't really babble as a baby, so it's like she's just now picking up skills. The "yes" thing is weird, though. She used to answer everything with "yesh!" but now is echolalic in response to "personal" questions. She can answer "academic" questions correctly and appropriately- "What is Arya (her baby sister) hungry for?" "Milk!" "What do you want to drink?" "Drink?"

Hmm. Very interesting. Now I have to think about what else she might have lost.

I guess I thought it was typical to go through "word phases," but maybe it's not? Like, she has words or phrases that she uses a lot, in a number of (mostly inappropriate) contexts. Right now she's big into "no, no, no,"- she says it all the time, without meaning, in the same inflection the little girl she picked it up from used. A while ago it was "it's okay!"- never really meaning anything, said in the same sing-song way I say it. Maybe her "yesh" wasn't a real "yes," maybe it was just her pet word for a time, and since "yes" can be used in so many contexts that we didn't realize it was scripted...

Hmmm.

[MeredithA]

I am an SLP and I would recommend waiting for the SLP because you will want to be using the same techniques as her. If you decide to use PECS, she will be able to give you tips and show you how to work with another adult (the "back trainer") to introduce the system to your child. Consistency is going to be very important. Additionally, I bet you could get away with spending a lot less. A PECS board can be fashioned from a regular 3-ring binder & some velcro strips.  I typically don't use PECS unless a child is virtually nonverbal or unintelligible. I have worked with children with severe apraxia, and PECS was great. I combined with with articulation therapy as well, but of course PECS was a nice quick way to get communication going. I know it is tempting to order everything *immediately* because you want to help right now and as a mother I completely understand that feeling of urgency. However, I would wait until you get more information from the neurologist and meet with the SLP. 

[jenrose]

Originally Posted by MeredithA 

I am an SLP and I would recommend waiting for the SLP because you will want to be using the same techniques as her. If you decide to use PECS, she will be able to give you tips and show you how to work with another adult (the "back trainer") to introduce the system to your child. Consistency is going to be very important. Additionally, I bet you could get away with spending a lot less. A PECS board can be fashioned from a regular 3-ring binder & some velcro strips.  I typically don't use PECS unless a child is virtually nonverbal or unintelligible. I have worked with children with severe apraxia, and PECS was great. I combined with with articulation therapy as well, but of course PECS was a nice quick way to get communication going. I know it is tempting to order everything *immediately* because you want to help right now and as a mother I completely understand that feeling of urgency. However, I would wait until you get more information from the neurologist and meet with the SLP. 

That's fine if the SLP is going to happen soon. I knew my daughter would need speech therapy from very young, nearly from birth. NO one would prescribe speech therapy for her until age 2 or 3, and there was no way in heck I was missing those first years of language development. 

[jenrose]

Shiny's  condition is so rare that when the doc said, "We need to test her chromosomes" and I said, "What do you think is wrong", she couldn't answer. And she was right. I could look at my daughter and say, "It's not one of the major trisomies" but there is NO way of knowing which chromosome has the problem just by looking at a kid. In fact, I saw a picture of a little boy on a special needs families community, and said, "Has he been chromosome tested? He looks like my daughter". Turned out he didn't have a 4q deletion... he had a 5q deletion, which is completely unrelated, but because it "hits" a couple of similar systems, he has "the look". 

It's like if your operating system is missing a driver and mine is missing a program, they both might not work in similar ways, but the underlying problems are different. FOr rare chromosome disorders, karyotyping will usually find it. But there are genetic causes of mitochondrial dysfunction that are single-gene, and those won't be picked up by karyotyping. 

[MeredithA]

I absolutely agree. The OP mentioned that speech therapy would be starting the 1st week of January so I think it is best to wait since it is coming up so soon. But you're right - it is good to be proactive about getting help early on :-) 
 

Originally Posted by jenrose 

That's fine if the SLP is going to happen soon. I knew my daughter would need speech therapy from very young, nearly from birth. NO one would prescribe speech therapy for her until age 2 or 3, and there was no way in heck I was missing those first years of language development. 

[ErinYay]

Thanks everyone!

Yeah, her first speech appointment will be on or before Jan 7th (hooray for federally mandated EI deadlines) and we'll discuss it at that point.

I *am* kicking myself for not getting her eval'd at 18 months- she had *exactly* 8 words, which was the minimum standard at her ped's. Dumb us, we still listened when people said, "Oh she's doing xyz, *that's* why she's not talking," or, as our ped told me, and I quote, "Well, you just get her everything she needs. Of course she doesn't need to ask for anything." I was all, "lady, I'm a good mom, but I ain't *that* good of a mom..." I suppose it's fine now, as she has "new" behaviors and tendencies that she just didn't have (she's in a major hand-flap stage right now, in addition to like 90% toe-walking and she likes to stand stationary on her toe knuckles, with her toes bent *under* her foot? She toe-walked at 18-months some, but nowhere near as frequently as she does now, and she had no stims that we were aware of as she does now.

Here's a slightly different question, but I don't really feel like starting a new thread:

how common are looooong pauses in early phrase building? She has 2-3 word phrases now, but they're a) mostly non-functional, and b) she pauses forever between words.

"More. *beat* Juice." "What kind of juice do you want?" "More. *beat* Green. *beat* Juice." (She likes to throw "green" in front of everything- she's never had green juice. It's just her thing, I guess.)

She also pauses before she speaks more and more- she gropes for words increasingly more often as well. 

I asked a few moms, and their typical kids didn't do that when they first started stringing words together. Is it maybe an apraxic thing? (I know the groping is a red flag for apraxia, but dunno re the pausing.)

[FarmerBeth]

Hey ErinYay.  My younger son, now 7, does this somewhat now and did it at your daughter's age, too.  His official diagnoses is still expressive language disorder, although I suppose apraxia is similar.  He shares a psychologist and an SLP with my older son who has ASD with a very Asperger's like expression (Asperger's is not given as a separate diagnoses from ASD in our location) and the feeling on things is that there is a relation between the younger son having speech and some abstract concept issues (like time) and a child with ASD in the family, even though he doesn't have the social or obsessive issues common to ASD (some sensory issues as a toddler, though, but none we know of, now).

Anyway, what you are describing is a word retrieval problem, and possibly a slow verbal processing speed, both issues my son has.  I think it's great she's still finding the words, even if it's slowly, and she's way ahead in phrase length to where my son was at for the same age.  The early help you're getting her should really pull her along.

What really helped my son with word retrieval issues were the categorizing games the SLP gave us.  He had lots of pictures of different things to put into piles of similar things.  He got to make the rule as to what made them similar, and he had to tell us somehow, even if it was non verbally.  He did it in as many different ways and categories as he could think of.  The idea was that the more connections he made to the word, the easier to find it.  I guess when you see the SLP she can work out what will help your daughter.  She's a lot younger than my son was when he first had speech therapy, so something different might be appropriate.

Another helpful thing that's great independent of any therapy was singing together (I find my son can use words more easily with music involved) and playing rhyming or sound games/reading nursery rhymes and tongue twisters.  It was very slow going, as he has a lot of phonetic and auditory processing issues.  DS couldn't rhyme anything until last year, but he loved hearing the rhymes and got a giggle out of the tongue twisters.  I do think it helped in the end, and it was fun as a family, and caused no harm.

Lots of reading was fun and helpful, too.  In my son's case, reading really pulled along his verbals.  He's caught up to grade (2) now for reading, a straight B student in general.  When his reading caught up, his speech became way more typical of his age, and his word retrieval issues got better.  He says he only sees pictures, not hear words in his head, but now that he reads he can hear the words when reading sometimes.  He also sometimes "sees" the word he needs in print in his mind when he tries to find the word he wants to say.  Your daughter is younger than the point that reading is likely to help her this way, but reading to her sets a good foundation.

Anyway, just some thoughts on the word retrieval.  Hope I wasn't too lengthy.

[ErinYay]

No worries about length- it was all very interesting and helpful!

She refuses, like, adamantly refuses, to sing with us, but likes to fill in words- "Baa, baa, black-" "Sheep!" etc. We naturally do a lot of fill-in-the-blanks with her, and have for a long time. I don't know if this is helping, hindering, or neutral, though. "Mama's in the-" "Kitchen!" etc.

We'll see, I suppose, in time! Tough for an impatient gal like me!

[jenrose]

Shiny loves music too, and sings far better than she talks in most cases.