Brave Tori's battle
Right from babyhood Tori Nearon had medical problems. So many, in fact, that for the first three years of her life, she was shuttled back and forth to Johns Hopkins Hospital four to six times a year by her parents in search of a diagnosis, or even a prognosis - something they still don't have to this day.
"It was a matter of working with the skills she had, and at the same time trying to work on a lot of the weaknesses," her father, Martin Nearon, says.
Though few of us think about it, speech is a physiological process which starts with strengthening of the oral muscles through eating and chewing food. As a child grows, other muscles that control breathing are strengthened which allows us to string multi-syllabic words together to form sentences.
Because Tori had difficulty eating she subsisted on a liquid diet until she was three and a half years old when an operation enabled her to keep food down. Once that happened, and she could start eating properly, her muscle tone gradually began to improve.
"Everybody takes speech for granted. You don't realise that physical needs are related to speech," Mr. Nearon says. "Because Tori didn't start until she was three and a half, it has been a big catch-up game for us."
It is said that nature often compensates for a disability by enhancing other abilities, and so it is with Tori. Not only is she blessed with a happy disposition, and a friendly, outgoing personality, but also she is academically bright. Still physically smaller for her age than her peers, she is nonetheless an active, fun-loving child who runs around and plays just like them - a long way indeed from her first years of life when her overall muscle tone was weak. Like all parents who look for certain signs of progress at various milestones of a child's life, Mr. and Mrs. Nearon noticed these weren't being met.
"Tori's main thing was her failure to thrive," Mr. Nearon recalls. "Her main muscle tone was not good and she was quite weak. She couldn't sit up, and she didn't walk until she was three. We were really worried."
Although the doctors still don't have an overall diagnosis and prognosis on her overall health, the little girl has undergone a series of operations which have aided her progress. In her pre-school years, the Child Development Centre staff were also a big help.
"They had some seminars and workshops for us, and told us what we would have to do and what we had to to look out for in terms of specific development areas," Mr. Nearon says. "They were with us right up to the time she went to primary school."
Once Tori entered Elliott Primary School, Department of Health speech pathologist Aprille Choudhury-DeShield took over. She began with weekly one-on-one sessions, and then taught the whole class sign language, including the signs that Tori was learning, so that there would be mutual communication.
The programme has proved to be a resounding success all around. Tori is making remarkable progress, her colleagues and the teachers all love her, and invaluable life lessons are being instilled in her fellow students.
"Tori is speech-delayed. She started off with sign language, and as she was getting that she was also getting vocabulary to go with the signs. Somehow, sign language helps to facilitate speech for reasons we don't understand. It is tied up in the motor development of the brain." Mrs. Choudhury-DeShield says. "Then, as time went on, she began dropping the signs and replacing them with actual words, so now we are building up her speech vocabulary. Some of her classmates are very excited that they can understand what she is saying."
There is no question that the little girl understands what is said to her, and according to her speech pathologist she is "on a par" academically with her peers, who are at Primary I/Part of Primary II level.
In the classroom, Tori works with a paraprofessional at her side.
"She is definitely mainstream and loves the school setting, and the children love being with her. They like to include her in their activities and look out for her," Mrs. Choudhury-DeShield says.
However, because she is both outgoing and physically small, some students instinctively want to baby her, but Tori will have none it.
"Once she has learned how to do something she says, `Leave me, go away'," Mrs. Choudhury-DeShield says. "She wants to be a big girl, and she makes them respect her space."
And it seems Tori never forgets what she has learned with her speech pathologist.
"If there is something that we have worked on she will do whatever it is when she sees me no matter where we are - in a shop or anywhere," she says.
While the child's speech is still not totally clear or fluent, it is a long way from the difficult days when even her parents struggled to second-guess her needs and desires.
"A lot of it was body language," Mr. Nearon remembers. "We did some signing, but most of it was related to her needs: to eat, to drink. For any of the other things, she would try to do them herself or grab your hand and take you to whatever she wanted to do or see. With all the operations she had she couldn't say what hurt, and not being able to tell us what was wrong when she was in discomfort was very tough."
Today, the Nearons are just as delighted as Mrs. Choudhury-DeShield with their daughter's progress.
"Aprille has done a wonderful job with her," they say. "In fact, the whole school is just great. The kids know exactly what Tori is saying. It teaches them patience, compassion - the whole lot - and is good. Everybody cheers for her. She is very smart."
So smart, in fact, that she not only continues to amaze her speech pathologist and teachers with what she picks up, not to mention "the little tricks" from her peers, but also can operate the family DVD player like a pro.
"You have to go through so many memories to get to the movies, but she can put on a DVD and go to the right memory and actually start it," Mr. Nearon marvels.
Despite all the traumatic associations Tori has had with doctors and hospitals, her all-time favourite TV programme is `E.R.', from which nothing will budge her when it's on.
"She loves watching doctors who don't touch her," Mrs. Nearon notes.
To help their daughter disassociate aeroplanes and hotels with medical treatment abroad, the couple took Tori on her first vacation when she was four, and that helped a great deal. Today, she loves to travel.
She also loves music, dancing, playing the recorder, the beach and swimming pools, as well as regular weekend visits to the Aquarium.
She has a wonderful, interactive relationship with her 13-year-old brother, Tyler, who is at boarding school in Canada, and who "absolutely adores" his little sister, but her very best friend is her dog Riley.
While Tori still has some way to go, and her future is uncharted, both her parents and Mrs. Choudhury-DeShield are distinctly upbeat about her progress.
"She has come a long way. Each teacher who works with her has been really impressed. With Tori it is always exciting. She continually surprises all of us because we don't know how far she will go. She keeps raising the bar on any expectations," the speech pathologist says.
"Her parents are also very supportive, and children of supportive parents always do well. They always attend meetings, and whatever we ask them to do, they will carry through with at home."
"We take it one day at a time," Mrs. Nearon says. "Tori is such a joy. Through it all she just smiles the whole time, and that helps us as parents to get through the day."