Functional Speech

0511171107
You might think hearing your nonverbal four year old use a word to request something he wants or needs would be wonderful, exciting, fantastic, or any other number of positive adjectives.  But for me it is almost always heartbreaking and agonizing.  This is because R generally only manages to push the word out for what he needs when he has reached a level of utter agony and desperation. You can see on his face in those moments that he has employed every possible tortured, screaming brain cell in the task of forcing out a single word in a last-ditch effort to make us understand.  Most of the time this happens with the word “cookie,” which may not seem like a desperate situation, but it is.

Reza has a very important night waking ritual, and that is that when he wakes in the middle of the night he eats chocolate chip cookies and drinks some water, and then he goes back to sleep.  He repeats this in the morning when he wakes for the day.  He does this every day, and in the absence of this ritual he essentially has what amounts to a panic attack.  It is extremely mentally painful for him.  We always know what he needs (his cookies), but occasionally we have run out without realizing and it’s 3am and there are no cookies anywhere and he is screaming in pain and terror because the cookies need to be there and they’re not.  He tries every way he knows to tell us what he needs.  He leads me by the hand to the cabinet over and over.  He leads his Dad to the cabinet.  He screams and sobs and violently throws anything we try to offer in place of the missing cookies.  And sometimes, sometimes, in that moment of extreme distress he manages to push the word “cookie” desperately out of his mouth, spending the last of his strength to do so, hoping this might finally cause us to understand his need and to provide it for him.  It tears my heart to pieces because there is nothing I can do and I know his having produced that word at all is a measure of his agony.

Once, something like this happened during the afternoon while his after school therapist and a new BCBA were present.  Later that week we had his annual IEP meeting and the new home BCBA came with.  While we were discussing R’s communication needs she piped up and recounted how she heard him say “cookie” when he was extremely distressed and desperate.  She suggested to the team that we withhold highly preferred items until he gets desperate enough to say the word to request.  My mouth was open to object but R’s special education teacher beat me to it.  “No,” she said, “we’ve learned from working with R that while he can sometimes say a word, he often later loses the word(s) and genuinely cannot produce the word anymore.”  She went on to reiterate the focus on PECS and other nonverbal communication strategies for R.  Have I mentioned how much I love this teacher?  No kid should be tortured into producing speech, let alone when they often legitimately cannot produce that speech no matter how desperate they are.

But of course there ARE times when R occasionally says a word and it fills me with awe, excitement, and pride.  These are times when he echoes a word out of the blue with no apparent intent- usually a word from hid iPad program such as “giraffe” or “strawberry.”  He will say the word to himself over and over in a happy, sing-song cadence with a sweet little grin on his face and it fills up my heart.  When I sing his word back to him his whole face lights up with pleasure and I feel there is nothing more right than this moment.

The take home message from this post?  So-called “functional” speech is clearly not all it’s cracked up to be. 😉

Let There Be PECS

vlcsnap-2016-02-08-14h46m21s110.png
R using PECS to request a cookie

Recently we have been having some pretty exciting success with PECS!  PECS stands for Picture Exchange Communication System, and it is a picture-based alternative form of communication.

Therapists have been trying to introduce PECS to R ever since he was first diagnosed at 18 months.  They start very simple- introducing just one picture card of a highly preferred item.  Back when they first started trying PECS with R, the card was a screenshot of his favorite Baby Einstein video.  Therapist A would play the video for a few minutes then pause it.  When R fussed for more, therapist B, standing quietly behind him, would take his hand and hand-over-hand have him pull the video card off a velcro strip and hand it to therapist A.  Therapist A would announce “video!” and press play.  The idea was that he would eventually make the connection that his video was played every time he grabbed the video card, and then he would begin grabbing it spontaneously without help or prompting from therapist B.

When we initially tried PECS, this never happened.  A few months later when we tried again and he did progress to grabbing the card himself, but was unable to discriminate between cards, despite the exact-photo images on them.  Meaning that as long as there was only one card on the strip he could and would pull it off.  But as soon as you added a second card option, for example “apple,” he would grab one or both cards indiscriminately.  The idea was to teach him to choose the right one- so if he grabs “apple,” he is given an apple, and if he grabs “video,” his video is played for him.  However, despite exhaustive attempts we were not able to get him to discriminate between cards, and he soon began refusing  to do anything more than grab and mouth the cards.  So we put them away again.  PECS were tried once or twice more and with the same result.  About 6 months ago I asked his therapists to put them away semi-permanently and focus on ASL signs.  While we did see some receptive language success with ASL, R was not able to form signs expressively.

A few weeks ago I noticed that R had learned what “no” means and was showing consistent understanding of the word.  That same week he made faces to himself in the mirror for the first time- a cognitive milestone that typically developing children achieve around 6 months of age, but which R had been missing.  Previously he did not appear to realize that the face in the mirror was his own.  We had seen one or two other cognitive developments recently, and it occurred to me that with these developments maybe it would be a good time to try PECS again.

P1100120
R’s current food strip.

We started with food items, since that is such a concrete thing, easy to make exact photo images of, and something which he interacts with multiple times per day.  Every time I brought him something to eat I showed him the card picture of the item.  He only eats the same 3-5 food items, so I kept those 4 or 5 picture cards hanging on a velcro strip next to the kitchen when the cards were not being used.  I noticed him looking at them on the wall throughout the week, and looking at them when I presented them with his food.  After one week of this, R independently went to the strip on the wall and pulled off the “cookie” card to request a cookie spontaneously for the first time!  Over the course of the next week he also spontaneously requested “chicken” and “chips” several times.  He was really doing it!  Watch R request a cookie here.

In our initial excitement over the communication we did allow R to choose “cookie” about 15x per day.  But after a few days it became evident we were going to have to deny him or “cookie” was all he was going to ask for and eat.  At first I tried removing the “cookie” card from his strip at times when it was not going to be an option.  This didn’t quite sit right with me- you wouldn’t remove words from a child’s spoken vocabulary just because the answer is going to be “no”- but I didn’t know what else to do.  This did not help or work however, as R simply searched for the card and then had a tantrum that he couldn’t find it.  It broke my heart because he was working so hard to communicate with us and didn’t understand why he was being ignored/denied.

At a loss of what to do, I reached out to an AAC (alternative augmentative communication) group on Facebook that is home to a number of helpful SLPs.  They all had the same advice- create a “no” symbol that can be imposed over the card so that R can still see the cookie card, but sees the “no” symbol on top, denoting that it is not a choice right now.  I made a clear pocket with the “no” symbol on it, and placed the cookie card in the pocket.

IMG_20160208_143302534_HDR.jpg
The “no” pocket.

To further help him understand, I also paired it with the “no” and “all done” cards that his school uses in the classroom, and with which his teacher said he is slowly growing familiar.  At first he was resistant.  He tried to grab the card despite the “no” sign, but I would run his finger over the “no” sign and show him the “no,” “all done” cards and use the ASL sign for “all done” (which he understands) as well.

His next move was to remove the cookie card from the “no” pocket.  My husband greatly appreciated this!  If the pocket made the cookies off limits, surely just removing it from there would make them available again!  We responded by intervening and putting the card back in the “no” pocket and reminding him again that it was “no” and “all done.”  At this point I decided to move “cookie” off the wall strip, and onto a separate sentence strip paired with “no” and “all done.”

P1100121
The sentence strip showing “no cookie, all done.”

Then when it was time that he was allowed to choose “cookie,” I brought him over and had him watch as I removed “no” and “all done” and took “cookie” out of the “no” pocket.  I placed the “yes” card down next to the “cookie” card and kept them on the same separate sentence strip.

P1100122
The sentence strip showing “yes cookie!”

This arrangement seemed to make more sense to him.  He began checking the strip to see if it said “yes” or “no/all done,” and his attempts to remove the cookie from the “no” pocket reduced dramatically.

As of this morning we are introducing cards for a few non-food items.  For example the strip below is mounted on his spinning chair so he can request to be spun by me or his dad.

P1100119

I’m really proud of him and excited that we are slowly getting some communication!  Hopefully we will have more PECS progress to share in a few weeks or months as we continue to work on this.