Child Of The Month

Frederique
by Catherine Jarrold and Normand Davidson
Quebec, Canada

FrederiqueFrederique is a beautiful blond girl born 7 years ago on January 8, 1992. She has a brother 16 months older and a sister 20 months younger. At 36 weeks and weighing 4 lbs., she was delivered by Cesarean after doctors noticed that there was very little prenatal growth. She stayed in the hospital for two weeks before we could take her home. There were no abnormal signs that anyone detected at the time. She was breast fed for six months. She did have colic, and her weight gain was very slow.

About 1 1/2 years after the diagnosis, our geneticist suggested we have blood samples as well as skin biopsies taken from my husband, daughter, and myself so that further testing could be done at Children’s Hospital / Harvard Medical School in Boston. Our daughter also participated later in the Elwyn research. It was also recommended to us that we get Frederique into an early stimulation program as soon as possible, as well as start physiotherapy, occupational therapy, speech, and play therapy. Until age 4 she had weekly appointments with many of the above therapists with whom she either cooperated or did not. She was also going to a play group three half days a week. By then she was traumatized by all professionals who tried to approach her. She had had her share of poking and testing. Even a simple trip to the hair dresser was a major traumatic event for everyone involved.

She learned to walk at age 2. She still has trouble with her balance, therefore, she seems to wobble. With age and greater strength, her walking has improved. She most often runs on the tips of her toes to get from one place to the next because of her equilibrium problem. She has a hint of cross eye or lazy eye. At age 4 1/2 she had inguinal hernias repaired. By age 3, Frederique had a repertoire of 50 words. Now at 6, she is making sentences of 4-5 words and can make herself reasonably well understood. We are confident she will improve some more. Being able to communicate has relieved much frustration and tension on her part. She also has a deep love for music which she enjoys and can also be used to calm many tantrums. She knows and sings the words to many songs.

Frederique has a high tolerance to pain as well as to the heat and the cold. She loves to be around heat sources such as the oven door or the cooking elements when in use. Therefore, she needs constant supervision. Frederique learned to ride a tricycle when she was 5 and can now ride a bicycle with training wheels. When we watch her go, everything seems so “normal”. She seems very happy when she can follow her siblings and neighborhood friends around. Since she doesn’t watch for traffic, she needs to be supervised.

We try, as a family, to include her and to get her to participate in as many family outings as possible. In the winter, she tries to skate and to ski. In the summer, she loves to play in the pool. Our priority again this summer is to get her toilet trained. We have been trying off and on for 1 1/2 years.

When Frederique was 4, she started school full time in a special class, in a regular school, with other handicapped children. She is finishing her 2nd year soon. She has made tremendous progress and enjoys being in the company of other children. Even though she is now 6, she has the weight and height of a 4 year old. As a result, older school children tend to want to mother her and play with her. We have tried, and are still trying to get her integrated into her neighborhood school with her brother in kindergarten, but the regular school system doesn’t seem prepared nor willing to give Frederique a chance. I believe it is our greatest frustration as parents. I feel that I am constantly having to fight battles for Frederique to ensure that her needs are met and that her rights are respected.

It is a daily challenge to live with Frederique, one that brings some ups and downs, some tears, a lot of laughter, and much love. If any readers wish to write to us to exchange experiences, views, comments, or to simply chat, we would be happy to hear from you and to reply.

Catherine Jarrold and Normand Davidson
194 Rosedale Avenue
Beaconsfield, Quebec, Canada H9W2H8

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