Our adventure into diversity began as an arrogance of the human spirit. If this comes across as very personal, it is. I believed I was entitled to a perfect child, a flaw in my thinking of which I was not aware.
Maddie came to us in the middle of her fourth month of life amid a flurry of confusion and crossed wires. Was she or wasn’t she on the plane? Thankfully she was, and we left late to arrive at the Baltimore-Washington airport well after midnight to find a deserted lobby containing only Maddie and her social worker. A few minutes later she was ours.
She was born with a cleft lip/palate, but that was fixable; it didn’t keep her from being "perfect" in my mind. Life began to take on new dimensions but all within our control. Our son Scott was (and is) a drummer and this presented no problem. But then we noticed that the baby was never disturbed by his practicing. At six months it dawned on us that Maddie could be deaf, and at 11 months her deafness was confirmed. That latter day is imprinted on my brain. Our road veered sharply into a frontier of unknown choices and decisions made without knowledge.
When it is discovered that a child has a disability, the waves that emanate from that knowledge shake the world of her family and friends. Fears and prejudices appear without warning, and totally unprepared individuals must deal with one or more unfamiliar disabilities as well as their own circumstances.
My first response to Maddie’s deafness was tearful—my poor baby would have a tough road to travel. Next, in my arrogance, I announced that she would learn to talk and not be saddled with deafness. Luckily we were shown a video about a man’s search for help in dealing with his own son’s deafness. His search for direction involved an examination of the different methods and philosophies used to educate the deaf.
I was still numb from our news but could not help noticing something he didn’t even mention. Children learning American Sign Language (ASL) appeared relaxed, happy, and responsive. On the other hand, children in classes using an audio-visual method (learning to read lips and making the most of their hearing) were stressed, trying so hard to participate in a hearing environment without hearing. That sold me on ASL, a decision I will never regret.
When we first realized she was deaf, it took us a long time to understand that when parents of deaf children told us to teach her "language, language, language," they did not necessarily mean speech. Language is communication using whatever means works: speech, ASL, hand motions, facial expressions, the written word, acting out; speech is only one form of language, i.e. the oral.
The journey is still continuing and has taken many directions. As a teacher I have learned to step back and modify my approach as a regular part of every class. Our decisions concerning Maddie have been dealt with in the same way. Every few months we do searches to check what’s out there, what’s new, and what we need to do to take the next step.
A hard part of this journey has been to accept the "interference" of strangers in our lives. Most parents have autonomy with their children. Relatives and friends may give their opinions, but the final decisions rest with the parents and are usually made with a minimum of guilt. As a very private person, I was horrified to find strangers in the schools and Intermediate Units making decisions about the future of our daughter. Social workers, teachers, administrators, all had their own views on what was best for her, and they held the purse strings. "IEPs" (individual education plans) became arenas of struggle. Gradually we achieved some sense of balance. On the one hand, we, the parents, know what is best for our daughter because we know her best and do our homework. On the other hand, we welcome input from Maddie’s team of advisors to help our decisions be the best ones for Maddie.
One thing that has kept us going is Maddie herself. Raising a child is a glorious undertaking. Maddie is different each day—we see the growth, and even if the leaps are not always the size we wished for, they are there. Maddie is a powerful spirit who has visions of her own. Another thing that has kept us plodding ahead is that we never stop investigating new possibilities. Some weeks I literally have earaches from being on the phone for hours. We regularly read about deafness, we socialize with the deaf community when possible, and we try new ideas.
Recently, we ventured on a mini-pilgrimage to a traveling exhibit, "History through Deaf Eyes," that had stopped for a month in Philadelphia. Maddie, her brother, and I attended the exhibit and a lecture on the topic "Deaf Artists in America." Maddie was in her element and we were the outsiders; ASL was the primary language while interpreters voiced a translation. Nothing would compare with the thrill of seeing Maddie beam with joy as everyone "spoke" her language, and I was happy knowing I was not a complete outsider.
Doylestown (Pa.) Meeting has always been open to our new ideas. We have taught some sign language, and teachers at our First-day school have shown great ingenuity in dealing with Maddie. Last year we decided to make a rudimentary search into how a meeting could best deal with deaf members. We sent out a survey to many deaf people and those who come in contact with them. In doing this we opened many more doors than we closed, encountering more questions than answers. Pain, anger, loneliness, and hope were found in their answers. In May 2002 we presented our nonscientific survey to the meeting (part of which is in the sidebar). We believe it helped bring Maddie and our meeting a step ahead. We hope to create a more accessible atmosphere for Maddie (and any Maddies that follow) in our Friends meeting that will allow her to develop friendships that will grow in time and travel beyond the superficial.
As Maddie is growing older, we see her more and more isolated from the world around her. Deafness is a hard handicap to overcome. We believe this is only the beginning of a long journey for us.
Our goal today is to make people more aware of the deaf, and their needs and concerns. Our future goals are not formulated yet but we have faith that they will emerge in good time.
©2003 Paula Laughlin