Well-Loved, 1995-2016

As a parent, I believe every child deserves to be well-loved. My son attended the funeral of a friend from town very recently, a young man whom we’ll call Stephen, who was 21 years old. Stephen didn’t look like the sort of boy to have plentiful, close friends and community involvement. You see, he was completely dependent on others for mobility, nutrition, and hygiene, and he did not speak nor use a device like my son’s. He was always in his wheelchair, his arms at angles, his feet in the stirrups, with a broad facial expression. His joy was visible and seemed continuous.

When I told my son of Stephen’s passing and upcoming funeral, my son was visibly Screen Shot 2016-06-27 at 5.44.27 PM.pngstricken. I asked whether they saw each other, and my son replied” “a lot.” He showed that he wouldn’t be able to settle in for sleep, so we sat up together and discussed the details of Stephen’s life and death. He had a heart problem, followed by lung problems and had not been well since the last time we saw him.

That last time was at local special needs basketball group last fall. The recreation center hosts a weekly group of children and young adults to learn and play basketball. Stephen’s father was extraordinarily vigorous at practices, running Stephen around the court and staying in the action. I was watching from the sidelines mostly, but my son would have witnessed Stephen’s joy up close.

As we left the funeral, Stephen’s entirely “typical” best friend and next door neighbor, who I’ll call Stewart, greeted my son by name with a big hug. Stewart had volunteered at a summer day camp that Stephen and my son attended. The boys had been in the same group. The group camp photo is one of two that my son stands in front of almost daily, studying it and reminiscing, as he waits for his dinner to warm up. He loves that group picture. The basketball group’s photo is at the entrance to the kitchen in another prominent place. Stewart attended the basketball group as well.

We had learned in the funeral that Stewart and Stephen were next-door neighbors who saw each other every day, Stewart walked over to his friend’s house to tell him about his day at school. On the church steps, Stewart graciously explained to my son that Stephen’s first year of life had been painful, with heart surgery, as had his last, but that he is now peaceful.

Stephen’s funeral was well-attended, and the eulogies long and detailed about his many interests, activities, and preferences. He watched and enjoyed certain shows and sports. Stephen had been active in his family’s church and had completed religious education exercises via multiple choice administered orally. Religious belief has, for me, been at times difficult and at others comforting. I appreciate what belief gave Stephen’s family and Stephen himself, even as I am unable to partake in it.

My son has teared up, uncharacteristically, a few more times in the past week or so, and it was when he was thinking about Stephen. He is back in summer camp now, the first season without this friend. When a child has difficulty interacting and lacks functional communication, I worry whether the child  has someone at home who truly knows him or her. Stephen was well-known, and well-loved in a beautiful, brief life. I cried, too, shocking my son, but in my case for Stephen’s parents. Their lives were defined by and encircled their son. If anyone needs and deserves prayers now, it is they.

The family asked that donations in lieu of flowers be made to our sons’ camp, a 401c3 charitable organization, http://www.campacorn.org/donate.php

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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.

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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.