Most parents, somewhere along the way, let go of little fantasies they have about their kids, as they see their children grow up to become the unique individuals they truly are. Those of us, however, who have kids with learning challenges perhaps give up those little fantasies more abruptly, as we watch our children struggle with the obstacles they face and as we try to help them achieve the happiness they deserve.
My daydreams about Rachel, my dear second child, ran into trouble from the start. The pregnancy was tough and I felt like something was wrong early on. Because I was 35 years old, I had a routine amniocentesis four and a half months into the pregnancy, and no apparent problems showed up. The amnio relieved my mind somewhat, but I still had anxieties, since my husband, Paul, had a nephew with expressive language and other developmental problems.
Toward the end of the pregnancy, my blood pressure became elevated, and we were advised that Rachel would have a much better chance of survival if we induced her 10 days early. After a pitocin-induced, but fast four-hour labor, Rachel was born on New Years Eve, 1992. Our adorable, precious little tax deduction was an apparently healthy, six- pound-11-ounce baby with an Apgar of nine. We were ready to warn Harvard that she would be coming soon. But the joy and relief soon turned back into worry.
Because of my experience as a nurse, I began to notice things about Rachel that worried me. As an infant she slept all the time, preferring not to be cuddled or stroked. In addition, Rachels muscle tone appeared to be low making her floppy like a rag doll.
There were other indications that Rachel was not developing normally. At times she would sit so quietly that friends compared her to a china doll. When she started crawling, she moved like a spider instead of on her knees. I thought she was very smart not to want to get carpet burns. At 17 months, she was still not walking. I made an appointment with the pediatrician, but, amazingly, Rachel started walking the day before our visit, at 18 months. She just barely passed another major developmental milestone.
Finally, at age two and a half, when she should have been comfortable with toddler-level social interactions, Rachels differences became more noticeable. Several friends and Pauls sister (who is a pediatric nurse) began to express mild concerns. Paul and I thought she must be hearing-impaired. Why else would she not respond to us? Why else did she talk loudly in a monotone? I actually hoped that our theory was right.
We took Rachel to an audiologist to have her hearing tested. She was "noncompliant" and screamed constantly at the puppets that were shown to her to stimulate a hearing response.
Finally, the audiologist determined that Rachel was not deaf. I then contacted our pediatrician and insisted that we needed to consult with a pediatric neurologist. Our pediatrician agreed and gave us a referral to Dr. Dilip Karnik.
We wrote Dr. Karnik a letter that listed our many concerns about Rachel: her poor eye contact, stuttering, echolalic speech, her loud tone of voice, short attention span, difficulty constructing long sentences, poor response to simple commands, poor verbalization of needs, tendency to sit in a "W" position, low muscle tone, and the fact that her social and play interactions were not age-appropriate. We ended the letter with the question, "Is she simply shy and stubborn or is there a problem?" We later realized that our letter would only confirm his diagnosis.
On February 1, 1996, Dr. Karnik diagnosed Rachel as having developmental encephalopathy, resulting in serious expressive language and fine motor coordination problems. I remember only two things about the appointment. One was Dr. Karnik looking at Rachel while he was testing for muscle tone in her face and saying, "She is so very beautiful." I also remember him gently handing me blank paper so I could take notes as he wrote his diagnosis and treatment plan on a dry-erase board.
In spite of other hard times in the past, the day we received Rachels diagnosis was one of our worst times. Our lives were changed forever. Paul and I began to pray for a miracle. Every dream we had for her about college, marriage, boyfriends, even kindergarten was put on hold, if not completely gone. We decided not to notify Harvard yet.
We decided to keep Rachel, who was now three, in a highly acclaimed Mothers Day Out preschool program, while starting intensive speech and occupational therapies in the afternoons after preschool. It was expensive, time-consuming, and exhausting. Although Paul and I grieved, we were also so happy to finally have a diagnosis and to know why Rachel would scream or simply stare at us. In less than a week we began to see a whole new world, the world Rachel must see through her eyes.
That spring Paul and I looked into the AISD Early Childhood Program. We had a hard time imagining Rachel in this setting, but after a prayerful and tedious search for other programs, we felt that Early Childhood was our only option. Nevertheless, we still felt there had to be a better place for Rachel. Her needs were so specific. We were searching for a program that offered more intensive speech therapy and provided her with the best possible peer group. My instinct told me to keep on looking, and so far my instincts had not been wrong.
One day, almost by accident, I stumbled onto Capitol School as I was calling every number in the Yellow Pages under the heading "Schools with Special Academic Education." Paul and I were nervous and skeptical, but we signed Rachel up for "Winnie the Pooh Summer Camp" at Capitol School. Suzzanne Moore, an early childhood specialist taught the class, and the program was wonderful. Rachel left school every day energized and upbeat. And, most importantly, she started to communicate with words she was learning in class!
In the fall of 1996 she was old enough to enter the upper-level preschool class taught by Ellen Roberts, a licensed Speech Language Pathologist. We enrolled Rachel, but I had a hard time relaxing and putting my faith in Capitol School. And it was tough for Rachel at first in the more structured classroom, especially since she was the youngest in the class. She screamed and cried a lot during the first few months and often sat on a bean bag, angry and defiant. Nonetheless, Paul and I soon realized that the program was working for Rachel and that the longer she stayed there, the more her behavior improved and the happier she seemed. Most importantly, her behavior and emotions never discouraged Miss Ellen, who remained positive and maintained very realistic goals and expectations.
Helping a child with disabilities is very hard work, but we had Miss Ellen! Through Ms. Ellens special talents, Rachel slowly began to talk. At Ms. Ellens recommendation we began family counseling with Dr. Sara Guillot, a family therapist who consults for the school. We worked hard to help Rachel with her anxiety and to understand how our own anxieties caused stress for the whole family. Slowly, we relaxed and watched as Rachel bloomed into a chatty, happy, and healthy little girl.
Paul and I know that we still have many speech and behavioral issues to work on with Rachel. This year she is enrolled in Capitol Schools kindergarten class, taught by another licensed Speech Language Pathologist, Lauren Brice, who is continuing the fine work begun by Ms. Ellen. One day Ms. Lauren asked me why I dont send her lengthy notes about Rachel every day - I had gotten a reputation for doing that with Ms. Ellen. I thought for a moment and realized that I am so confident about the school, and so much more relaxed myself as a parent, that I dont need to send notes very often. Paul and I feel confident that things will continue to work out for Rachel, and she may be able to mainstream into public school with ease and grace within a year or two. We feel as though we are a Capitol School success story! The alternative of where our family and Rachel would be now without Capitol School is unthinkable. The guidance and constant loving intervention offered to us from Capitol Schools staff have made a world of difference in our lives. Capitol School has brought us so close together and has given our family the tools to work as a team.
Although weve given up some little fantasies about our beautiful daughter, we havent given up our huge hopes that she can and will have a wonderful life, with many doors open to her. We owe a huge debt of gratitude to Capitol School for allowing our dreams for Rachel to prosper.