In Search of Words: Say it, and Say it again

On the last day of the school year after 4 weeks in this school, as I inventoried my caseload, there was one child whose code I had not cracked. I was concerned. I wore long sleeves in 80+degrees because it was my day to see him. He made no verbal sounds that anyone could identify, couldn’t hold an object in his hand without assistance, and tended to scratch the adult with him. My passion is, as you may know, something called AAC, Screen Shot 2016-06-23 at 11.41.43 AM.pngwhich my son uses to communicate, in his case via iPad and an app (for more information on what he uses, click here.) The iPad “speaks” for him because essentially his own vocal tract doesn’t respond to his commands and intent at all well.

The district I’m in now, however, follows rules which
strictly limit children’s “screen time,” meaning no television babysitters or canned lectures, and their access to cause-and-effect toys, which are useful when a child cannot speak. So I had been leaving my touchscreen AAC devices and touch-button toys at home, bringing velcro’ed, laminated pictures instead. Most kids like them.

But laminated pictures make no sound.

It being the last week, I had begun to take liberties, however, and had already used my iPad for all sorts of vocabulary lessons with children in general education. This iPad is mine now, but it was my son’s very first one (the iPad 1), old and heavy. The app my son uses for communication includes various levels of  “vocabulary sets.” A vocabulary setScreen Shot 2016-06-23 at 12.00.27 PM.png is an interlocked set of screens with pictures that, when touched, say a word or phrase and show its spelling, or navigate to another screen. The “Things” button goes to a menu including buttons for more choices, such as “Toys” and “Food.” The “Food button in turn offers “Breakfast,” “Fruits,” “Vegetables,” Meats,” and there to pictures of “fish” or “burger.” You can “say it again” by pressing a speech bar at the top that holds the spelled message.

Using an iPad for communication at home requires a parent or student to take Screen Shot 2016-06-23 at 11.55.38 AM.pngcare of the equipment, charge it, and run updates. In school, breakage and loss are less likely.  Several students in this school clearly Screen Shot 2016-06-23 at 11.55.58 AM.pnghad used touch screens, but this child had not. Furthermore he had dropped many of my toys. For many reasons, an iPad was not my first or second choice for him.

Screen Shot 2016-06-23 at 11.58.13 AM.pngHowever, tour hands are always with you and never need a charger. So I
started to have this boy request (“give me”) by touching his open, flat hands to his chest. At some point when I had beenScreen Shot 2016-06-23 at 11.59.21 AM.png showing him sign language, I realized his limp arms were not responding to my touch at all. I had tried to get him to understand that sign language really is a way of “saying” things. He was not producing the signs with floppy arms and hands, so while he might learn to point eventually, he wouldn’t today. I only had him with me today.

So I held him with me for a longer session than we had ever had. I wasn’t going to let him end the year until he’d experienced the joy of communicating clearly. We started to use the iPad to “say” various things, my hand holding his. In a picture of Beach, you could “say” sand,” “water,” “ball,” and in the page of “needs,” you could say “break” and “I need a break.” He began to touch the iPad independently to make it respond. I’d tell him to “Say it again,” which meant touching the letters at the top so the iPad would repeat it for you. I’m not sure how far into this exercise it was, but he became very calm. He focused and stopped moving or flopping. He didn’t scratch me for the rest of the session.

Screen Shot 2016-06-23 at 12.01.54 PM.png

Kitchen scene (TouchChat)


I don’t know how much of he understood, but he stopped getting mad when I told him to “say” something.

Children who cannot speak may not understand the words we say a lot of the time. They do often understand the emotion and intention behind what we are saying. With the utmost sincerity, certainty, and calmness, I told him,”This is how you say things. Your mouth doesn’t do what you want. I know. It’s hard. You say it with the iPad.”

Softly, at a speed about 5-7 times slower than typical slow speech, he said,”I want iPad.” I will never be able to prove that he said that. I do not need to because I understand what he meant. I told him, “You will be fine.”

I had kept his group an extra half-hour. It was a half-day. In fact it was the last day that school building  would ever again be filled with students. It was antique and closing permanently. “We may see each other again. You will be fine,” I said as we went out to the playground. I knew he does not understand the conditional word “may,” but I was talking for myself more than for him. And who knows. Maybe we will.

Child’s Play, and Some Broadway Tony Awards

As of today, I’ve completed my first school speech therapy assignment, with children aged 3 to 5 years old in an inner city public school. My caseload included 28 children, and I had one month left in the school year. From the first day, it felt like a race to get acquainted, connect with, and help each one of them. It’s harder at the end of a school yeScreen Shot 2016-06-23 at 11.11.16 AM.pngar to find children, with so many practicing the “moving up ceremony” (graduation to kindergarten), a school-wide field trip, and miscellaneous absences. When I greeted the children, each get his or her own “Hello Hand,” a large hand-shaped clapper noisemaker. At the same time a reminder, a hall pass of sorts, and a greeting, the typical children in the classroom each wanted to clap the hand, too, so they would help me find my student in the classroom or on the playground when they saw me.  Within a couple of weeks, the students on my caseload knew and came to me or went without fuss.

The school was being closed probably forever (with every sort of hazardous substance somewhere within its centenarian walls). As soon as we’d met each other, the sScreen Shot 2016-06-23 at 11.13.39 AM.pngchool evidenced increasing facts of moving. Circle time and floor time lost their rugs and couches, and each day more bookcases lost their toy bins, puppets, or books. I already was carrying my own toys and tools with me (which I had made or bought) in large beach bags, but now I could only count on those. Boxes stacked higher; I left nothing in a classroom lest it be packed up.

The toys and materials we used were mine.Materials are not everything, but I was eager to capture their imaginations and attention.  The children soon came to speech to “play” and had favorite activities. I love it when a child is unaware that he is learning important words and trying harder than he had been. Within a couple of weeks, some cried out that they wantScreen Shot 2016-06-23 at 11.08.28 AM.pnged “ants,” my interactive version of Ants Everywhere, and UNDER and ON printable book. My homemade set of Boardmaker symbols and pictures, with IKEA finger puppets, for the classic Brown Bear Brown Bear by E. Carle, I was told, resembled a set the special education teacher had purchased for $30. The children could see my picture of what was coming on the next page and start to recognize that Screen Shot 2016-06-23 at 10.56.12 AM.pngthe words had meanings, too. The resource teacher owned a commercially-made set of figurines and cards for following directions. Keen to be different, my direction-following set consisted of tiny cars, a blueberry crate “garage,” and DollarTree skateboards, cones, and signs. My baby doll direction-following set (assembled for an average unit per piece of under $1) was less of a hit among my students (almost all male. )

I wanted to mirror what the teachers were teaching, too. The year’s curriculum closed with several units on “Buildings,” which struck me as odd for small children until I realized “house,” “school,” “store,” and “grandma’s” count as “buildings,” and children learn what a room is, not what style of roof is over it. So I made a play mat with two-lane roads, stop lights, bus stops, and pictures of places around the city. Since most children were getting “group” speech sessions, I finally found several identical (important!) school buses, since school buses are intriguing and mysterious for this age. The Screen Shot 2016-06-23 at 11.18.28 AM.pngchildren really enjoyed playing bus.” The bus followed traffic signs, broke down and went to “the repair shop,” and stopped at stops for people to get on. The children independently recognized the bus stops and fast food signs, but they didn’t yet know what a restaurant or store is. The only clear photo I found of a local school was of the high school, alongside an article about a 62-year old high school teacher being stabbed by a student.

The students didn’t recognize the landmarks I had included of their own de-industrialized city, the bridge and National Historical Park. The city was founded by an Screen Shot 2016-06-23 at 11.15.36 AM.pngindustrial organization created by “Founding Father” Alexander Hamilton of the $10 bill. His story is not history; it won 10 Tony awards last week, and his cast album debuted top of the rap chart. True Broadway hip-hop.

Largely self-taught and Caribbean-born, Screen Shot 2016-06-23 at 11.16.44 AM.pngthe lyrics accurately say he was the “immigrant bastard son of an whore and a Scotsman,”who went to what had been “Kings College” and is now Columbia, and then practiced law.  (“My name is Alexander Hamilton, and there is so much I haven’t done, just you wait, just you wait.”) I hope that the children I worked with this spring learn their letters and more, and stay on to the High School and beyond.


Training: Training dogs, people, kids with Autism; post-combat PTSD; and therapy dogs

Watch this ad before reading.
Please IF YOU HAVE POST-COMBAT PTSD, read this post first.

This award-winning ad is from the Royal Dutch Guide Dog Foundation. Dogs are trained.  Cesar the Dog Whisperer shows that dogs are not just trained; their owners manage them. Moms of young kids everywhere may joke about training kids like they’d train a dog. Wives who have a helpful husband around may joke and say: “He’s well-trained.” (I’d be offended if I were him.) Workers get on-the job employee training.

I would like to say I’m teaching my son, rather than him, but it’s more like training than teaching. Mothers and teachers of children with autism sometimes say we’re training children. Not all of us do, but I can’t call it teaching when it involves a year of learning to fold clothes, as a teenager. Some things are very hard to learn: after 5 years of daily training, at age 18 my son W can answer the question “What’s your name?,” and be understood more often than not.

Dogs who are pets are paper-trained, then “trained” to walk, and then better or worse trained. Some dogs are trained to be more than pets. There are probably enough working sheep dog videos on youtube to make that point. Then there are some dogs of just the right temperament who are trained to be companions and helpers to humans. The programs for this are rigorous, but it’s more like teaching than training.

W’s school has such a dog at the facility, a therapy dog, who is at school every day from beginning to end. (She goes home with a staff member.) Canine Companions for Independence provided her. Now his school takes and trains puppies to become Canine Companions for others – puppies who graduate and go to higher levels of training, before they find their ultimate homes.

(If not for CCI’s school facility dog, my son would still be asking me for a dog of his own. I love dogs, but can’t handle the schedule at this stage. Thank you!)

Therapy animals make a difference. When W was 4 years old and had just lost his father, we went each week to a horse farm. He climbed onto a therapy pony, Champagne, lay down on the pony’s back, and felt the thick fur. Champagne was very calm, no matter how much W bounced on his back, rocked side to side, or made loud noises. The temperament was remarkable for such a small adult equine animal, 1 1/2 times the size of a mastiff. With Champagne underneath him, W could feel loved and hugged and accepted; the sensations were what he’d always gotten while napping on his tall father’s warm chest.

W and I watched the ad at the beginning of this posting three times through till he could fully understand it’s full meaning.

If you skipped the ad at the start of this posting, now’s a good time to watch it. If you saw it the first time, now’s a good time to watch it. If you’re looking for a worthy cause to contribute money to, consider Canine Companion for Independence.

If you’re a dog lover interested in contributing time, give a good long thought to training a companion or therapy dog.
If you’re looking for a worthy cause to contribute money to, consider Canine Companion for Independence.

There are lots of types of training and several organizations in the United States. Ask me for more information if you’d like, or search for it yourself. Thank you for reading this posting.

What is Autism – Love is the Drug (autism treatment, autism families and SLP/SLT, autism professionals)

What is Autism, anyway:
Autism can be slippery. We don’t know what it is. We give it a name. We diagnose it. Diagnoses shift (…DSM-IV, now DSM-V…) Autism doesn’t come with a set of medical charts showing where it comes from or how it does its business. We give drugs for it. But drugs are really given for something else, not for Autism. This drug may mask some symptoms for awhile in some people. That drug may cure an intestinal disease that hitchhiked in with the Autism. Neither drug changed or reduced the autism. Most symptoms of Autism don’t match up to any drug that’s ever been produced.

Love is the Drug:
The only drug that helps everyone with Autism at least most of the time more than doing nothing is …. training. We can call it therapy, or education, or play intervention. In each and every thing we do for someone with Autism, we’re pushing the individual with the disorder in a way that’s hard for them to do on their own. We who work with people with disabilities believe everything we do and do not do is changing a neural pathway, stimulating myelin production, improving coordination of the indirect pathways in the brain, and helping.

Tracking Progress = Watching Paint Dry:
Usually the progress is slow. If progress is fast, if there’s major improvement, you can bet that the person’s own neural network is healing. Even if the treatment made a difference, Autism is such a mystery that it’s arrogance to claim the treatment did it all. Give the child some credit, too, since it’s the child’s neural network that was reacting quickly to your stimulus. It was the child’s acceptance of whatever strange-looking thing you did with him.

Without Kids, Humans would be the next mass extinction:
There’s a child involved. (Whether growing or full-grown, they’re still our children!) They are unique individuals. (Grammarians, relax, it’s still a word in English!) You can’t assume that the interventionist – parent or professional – is a genius. You can’t blame the interventionist – parent or professional – for what you see as failure. Who sets the standard? What are we comparing progress against?
the boy next door who’ll get decent grades in a 2-year college?
our image we have of a “successful” disabled person?
the last kid we treated with the same diagnosis or symptom?

Parents: we all have them:
We all want our kids and students to be successful, in all circumstances, and with all kinds of people. Even poor matches between teacher and student are experiences that can help the child work through difficulty.

Let’s be kind to each other. When someone’s not kind, draw a line, but you’ll never know what the other person is going through. Behind closed doors, you don’t know if you’d ever want to switch places. I know enough speech and language therapists to say most are thinner skinned than the Wharton MBAs I went to school with once. I know lots of parents of kids with Autism, and we admit we’re often tired, worried, and skeptical.

Every one of us has limits. Some limits are regulatory. Some are fiscal or non-reimbursable. Parents’ limits are time and money and other children and maintaining a marriage. These limits are all real. Children don’t make steady progress on all fronts all the time. Regressions are normal. (Typical children lose 2.6 months of learning every summer! Focus on the child, and remember what the professional’s scope of practice is. Remember, don’t shoot the messenger.