FamilyConnect

Store clerks, pharmacists, the lifeguard at the YMCA, the folks at the mailing store, fellow churchgoers, the bank tellers, and even the librarian have all eventually learned how to address my son, how to read his signals, what his preferences and interests include, and how to encourage his active participation.

They have accomplished these feats because they have had many opportunities to observe, react, receive feedback, and try again; they have reasonably good memories; and they are astute observers of how I engage with and respond to him.

After several very well-intentioned efforts, the librarian has learned that my son reads print although he is visually impaired, and acknowledges his preferences for mystery and humor in his selections.

Store clerks announce that his change is ready, give him the paper money, wait patiently as he places it in his pocket, and then offer the coins by supporting his hand with theirs as they release the change into it.

The pharmacist calls out when we enter, “Hey, Eric, it’s Ann. Come to pick up your prescriptions,” and she rattles the bag to orient him to which window to approach. Many of these people just have natural talent and have needed no prompting from me!

I have also come to appreciate greatly the power of a credit card. The young clerk at our local consumer electronics store probably had never encountered such a disabled young man. He desperately scanned the area in hopes of recruiting another sales agent to talk to us. When Eric used his wrist communicator (which plays prerecorded voice responses) to share his name and interest in CD players, the clerk immediately grabbed the nearest player and, in compressed speech, relayed to me all its advantages. I offered Eric the headset and suggested he “listen” and try it out. When I asked, “Would you like to try another,” he removed the headset and extended it to the young man. We tried several CD players. When Eric made his selection from two options, the clerk directed us to the CDs, while he rang up the sale. Eric selected several, and we returned to pay for his purchases.

The clerk immediately was “awed” by the fact that Eric had selected (by pure coincidence) the same CD as the demo in the headsets. An immediate bond was established. He turned to me with the total amount owed and asked how I wanted to pay. Eric extended his credit card, and the young clerk was momentarily silenced.

When he returned the card to Eric, he also extended the electronic pen for him to sign the display. Because the electronic display would not accommodate his name stamp, I assisted Eric to sign his name. By the time we left, the clerk extended the package to Eric’s hand, stating, “Here ya go, dude. Enjoy!” As Eric accepted the package and began to walk out, I heard the clerk exclaim, “Awesome!” So little effort, so much gained.

Modeling what one needs to do to elicit communication and social exchange and to facilitate engagement is the key to community acceptance and initiative. Whatever setting we are in, I make sure that Eric is seen as competent by offering him choices (he couldn’t care less whether he eats fish strips or fillets or whether we buy the tan shorts or the black ones). I enlist his assistance with tasks such as paying for goods, putting groceries on the conveyor belt, loading the milk into the cart, or stamping his own name on checks or on the sign-in form at his physical therapist’s office.

In addition to perceiving Eric as competent, the community also needs to see him in the role of helping. Eric “offers” to return a grocery cart for an elderly man, holds the door open for others, is a greeter at our church, retrieves items from the top shelves for a fellow customer, walks the dogs of residents who can no longer do so at his grandmother’s assisted living facility, and recycles newspapers at the neighborhood facility. Yes, he needs someone’s help to do all this, but the bottom line is that he does do it. When he was younger he partially participated in pushing his peers at the playground on the tire swing, showed another child how to fasten his seatbelt on a plane, and filled glasses with ice at church picnics.

Yes, I still notice the stares of others who are not as lucky as our community neighbors to have had frequent interactions with him. When the opportunity arises, he and I are happy to share with children who want to or do ask about his disabilities. Before a child can be dragged away by a parent embarrassed that she asked a pointed question about Eric, I inform her, “You were so clever to observe that…” What parent can ignore praise doled out to his or her child? These parents additionally learn something as a result.

And, yes, Eric and I boldly go into the women’s toilet facility when we are without another male. People notice but seem to realize why he is there, and it has never been an issue. One saintly woman in a very long line at the Houston airport kindly offered to stay with Eric while I used the facility. When I graciously thanked her and explained that he also had to go, she replied that she never thought of that!

Since he became a teenager, Eric has adopted a very age-appropriate attitude that is not always appreciated by others. Although he has no real words, his body actions and vocalizations speak clearly. When he has a meltdown in the community because a preferred song from the piped in music is ending or because a routine he anticipated is interrupted, I can no longer verbally reprimand him because it merely escalates the situation. Now, to distract and calm him, I have learned to respond, “I know you really liked ___, that was a great song,” or “You thought we were going to the pool, but we need to stop by the cleaners quickly.” His screeches momentarily cease so that I can escort us to a less conspicuous place but, nevertheless, we have created an incident.

How others react depends on my attitude and show of confidence. My verbal behavior is intended more to help them understand why he is upset than to provide him with feedback at that moment.

—M. Beth Langley