Clara Maria – A Life Less Ordinary

Part of finding a support group is learning from those who’ve already gained the wisdom and strength from traveling so much farther along the path of special needs parenting. One of them is Bernadette Reyes or Tita Bang as she is fondly called in our community. Clara was born 18 years ago when medical books and journals on Down syndrome  contained information based on children who were institutionalized. The prognoses were often grim and with the absence of the internet and readily-available information, parents were more often than not left to fend for themselves. Advocating for your child was harder and finding support is not as easy as today when a simple click of a “join group” button already opens you up to help and support. Tita Bang and her family fought the odds and last year celebrated Clara’s 18th birthday with a wonderful debut.  The Reyes family paints a picture of what life with a child with DS is. It’s not scary or terrible, it’s just life. It’s a different kind of life but aren’t we all living different lives?

Thank you Tita Bang for your wonderful generosity and for being so welcoming to the new parents of DSAPI. Thank you for sharing your darling Clara with us.

1) Can you tell us something about yourself and your family?

I am a psychologist by profession and presently an education program specialist at the department of education. I am happily married to a very supportive husband, a lawyer by profession. We are also blessed with four wonderful kids – Jose Mari (Joms), is the only son and is currently connected with San Miguel Corporation, Maria Nieves (Marian) is a theater artist from UP, Clara Maria, of course is my beautiful special daughter, and the youngest, Maria Andrea (Andi) who keeps Clara company at home. Clara is inspiration personified for my family and extended families.

2) Can you share with us Clara’s birth story?  How is Clara Now?

Clara came into our lives in 1994 when my son was ten years old and my daughter was almost 7. For a while, my husband and I were content with having to raise a boy and a girl but as we always say, God works in mysterious ways and He gifted us with a not-so-ordinary baby girl — a special girl born with Down syndrome. Initially, there was the shock! Because as it were, DS is only a topic I have met in my abnormal psychology class, it may happen to others, but never to me! What happens when I become part of the statistics? There was fear, fear of the unknown, (the Encyclopedia then would always say that children like Clara will die young!) there was the question, “why me?” I felt lost….my, brother the doctor, helped us look for answers. The Down Syndrome Association of the Philippines helped us find direction. Yes, it was painful, but we could not move on, so we, my husband and I talked to the kids and we agreed to work and process on acceptance. We all believed that acceptance of Clara’s condition is healing. We have to move on. Clara went thru the various medical concerns (karyotyping, to really establish that Clara has DS), and we lost no time, we attended the early intervention seminar for new parents and as early as three months, clara was already into physical and occupational therapy, as well as speech pathology. This went on regularly.

She also went to the UPCDC, the same school attended by my two elder kids. This school allows our special children exposure to  regular kids, which helped develop Clara’s social skills (she was never shy, and she rarely had tantrums). Our house became a big therapy room. We sacrificed the sala set, and instead placed rugs and carpets in the receiving area of the house, because we were told that they learn best by imitation, and so we crawled with Clara to help her develop fine motor skills needed for writing. To help the anteversion of her feet, we cut and pasted footprints the size of clara’s feet, all over the house up to the stairs and into her room. We bombarded our house with colors, bright colors. Puzzles and clay were fun to do with her older siblings. We also had a small sandbox outside the house for sand play. We imagined eating cookie sand cakes made and molded by her. Clara’s been a darling in the house. When she was in a SPED school in Quezon City, she is often a contestant in their academic contests, as well as in sports activities (walkathon is her forte!). In school and also in DSAPI activities, she is often the dancer in school programs (she loves dancing). When I used to teach a high school chorale,she was for a while, imitating me, conducting the chorale, complete with the right tempo! Last year, she was one of the special children featured as a model for Bench. She loves to watch the Glee series aside of course from the beautiful Disney musicals featuring Cinderella, Mulan, Arielle, Snow White, etc. Recently in school, she has developed the love for cooking, she likes to cook adobo and spaghetti and she makes cookies and choco pops too! She fixes her own juice or ice tea, and she prefers to take a bath by herself. She also adores our youngest girl, Andrea, whom she takes good care of as the big sister, by giving her baths or dressing her up.

3) How did you talk to Clara’s older siblings about Down syndrome?

We were straightforward with Claras siblings.We included her kuya and ate in our visits to the therapists if their schedules so allowed. We often talked to them about her condition, and how each one could be of help. We always talked about acceptance and I can vividly recall when they were fighting for Clara’s “custody” where my son said that when he has a house of his own, Clara would stay with her, because the ate, is an actor and the ate would rarely be at home. I also take care of the sibling sport group of DSAPI. This is a seminar for siblings of special children where they are processed on their feelings about their special brother or sister. These siblings are preparing themselves for the bigger role of being guardians to their special bro/sis.

4) What would you tell the parents of a child who was just diagnosed with Down syndrome?

For new parents – it pays to be open and accepting of the “specialness” of our children. The Early intervention seminar is a big help. Look for means and ways to provide a wonderful atmosphere in the home. After all, we are truly lucky to have Down syndrome in our midst. They are lovable, very easy to love, very sincere when they say ” I love you”. They literally and practically “make my day”. We should expose them to the world where we belong, we should not hide them from society, we should embrace the “difference” and as they say, its only a little chromosome. We treat them normally as other kids because they are really no different from others. We can help them develop to their fullest potential. After all hope springs for them once we as parents are healed. Acceptance is healing.