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Mom tells of her journey

Can you tell us about Michael’s diagnosis?At 13 weeks, we were referred to the Foetal Assessment Clinic in Claremont for a routine checkup. The doctor advised Michael presented markers for down syndrome – an absent nasal bone and fluid in the neck.

How do you recall dealing with the news?I was numb, confused, petrified, facing the uncertainty and how society would accept our son. It was extremely overwhelming.

How did his disorder initially impact you and your family? From the day our pregnancy was confirmed, everyone welcomed and celebrated our new family member in spite of the fact that we were faced with the possibility that Michael might be born with down syndrome. We opted not to have any testing done in terms of confirmation of his condition. Michael’s condition was confirmed at birth.

How does his disorder impact him? This is his “normal” and he’s an extremely happy child in spite of his challenges.

What are some of the positives that have followed because of Michael? Michael has been attending various therapies since he was six weeks old. He has proved with commitment and dedication down syndrome children are able to achieve their full potential if afforded the opportunity to attend therapy sessions regularly, which includes physiotherapy and occupational therapy from six weeks old. Once they have achieved their milestones during these sessions, they progress to speech and mediated learning. This is a lifestyle, not a quick fix.

Do you experience any difficult days, and if yes, how do you cope with them?Absolutely. Michael’s had serious health challenges, which includes being diagnosed with acute myeloid leukaemia at the tender age of 10 months and only weighing 6,8 kg. Having undergone extensive chemotherapy at Red Cross Children’s Hospital for six months, Michael miraculously survived this ordeal. Faith, prayer and submission carried us – and still does. The chemo affected his hearing and he has to wear hearing aids. His vision is also affected and he will soon have to undergo extensive tests to determine the extent of this. Michael gets sick very easily and is often admitted to hospital. We don’t have a choice other than to embrace our situation by trying to stay focused and positive. It’s not easy, however we are always mindful of others who might find themselves in more difficult circumstances.

How has your journey enriched you?Michael has taught me patience and I appreciate life and embrace each day as an absolute gift. I don’t take anything for granted. An important lesson I have learnt along the way is that disability can come knocking on anyone’s door at any time. Be mindful of others, reach out, make a difference in a small way, be it a word of encouragement, a simple smile or a “Hello, how are you doing?” Don’t criticise, complain or condemn; be kind.

Disorder aside, what kind of child is Michael?An extremely loving and happy child with a stubborn streak and a will of his own. He is extremely manipulative with his favourites from his inner circle. His friends are the over 50s club and they share long conversations. He has one special girl friend from school whom he absolutely adores. Her name is Heike and his little face lights up when he hears her name.

What makes him as special as he is?He knows exactly what he wants and can’t be persuaded once his mind is made up.

Are there any myths about the disorder you would like to set straight with experience or fact?The first question people often ask is, “How old were you when you had Michael”? There are three types of down syndrome: trisomy 21 (the most common), mosaic and translocation trisomy 21, which is what Michael has. This is the only one that is not linked to the mothers age. Mosaic and translocation trisomy 21 are the two rare types of down syndrome.

What words of advice do you have to share with families who have a loved one living with down syndrome? Don’t be ashamed of your child. Our children are God’s gift to us and we have the responsibility to love the, irrespective of their condition. Have patience with your child, it’s not an easy road, however, when they achieve their milestones, it’s the most rewarding prize.

What words of wisdom do you have for people who do not have any idea what it is like living with a loved one with down syndrome?Down syndrome individuals are blessed with an extra chromosome, which makes them unique in many ways. They see no wrong in others. It shouldn’t matter how slowly a child learns, as long as we help them not to stop.

What inspired the establishment of the Michael Parks Foundation and what support does the organisation offer?Frustration at not finding a suitable school in the Helderberg for Michael. Where we applied, we were told down syndrome children required intense therapies prior to consideration for possible admission into mainstream education. We wanted to afford Michael the opportunity to achieve his full potential, hence our decision to proceed with mainstream. It’s definitely not easy. In spite of the fact that Michael receives ongoing therapies, this remains a challenge. With regard to the establishment of the foundation, we realised the need for down syndrome children to attend therapies, which is a costly service. The Helderberg Lions Club in New Street, Somerset West adopted the NPO and, with the help of family, friends and Michael’s therapists, we decided to make a difference in the sense that parents who have children between the ages of zero and seven, can contact us for possible assistance in terms of physiotherapy, occupational and speech therapy, mediated learning, arts and crafts. Stellenbosch University offers Kinderkinetics to our children every Monday and during the summer months they fetch our children for swimming at their campus. At present our biggest challenge is a school which provides a curriculum suitable for down syndrome children. We strive to raise awareness around our children that they have the potential to achieve the unthinkable.

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