March 2016: Ilze van Deventer
Posted by The Little Pages - Mar 14, 2016
Ilze was born in the small Garden Route town of Stormsriver and attended school in Humansdorp. She met her ex-husband when she was 19 and got married at the age of 24. The couple's first child, Ceri (a girl), was born in 2009. Although starting a family at that point was not planned, Ilze says that the arrival of her daughter changed her whole life and way of thinking about life and she immediately knew that she I wanted many more children. Ceri was born with an extra toe and was apparently not the easiest baby, but Ilze loved motherhood. When Ceri was 5 months old she was already pregnant again. The family had moved to Johannesburg for better career opportunities and this is where Trace was born. The day after he was born the doctor told Ilze that Down Syndrome was suspected, the news came as a big shock as non of the scans before he was born had shown any indication of this. Ilze says that she cried for the first day or 2 and then realised that it was actually one of the best things that had ever happened to her and that she would embrace it whole-heartedly. She joined the Down Syndrome association when Trace was six months old and was appointed chairperson for Port Elizabeth (where she is now living and raising her children).
Ilze says taht it was daunting to become the chairperson as she was quite young at the time, but she feels that she grew from strength to strength in her new role and was passionate to grow in knowledge and learn from otehrs. Her ex-husband and her separated when Ceri was two and Trace was one, Ilze says that it wasn’t amicable so it added to the stressful life of a single, working mom, but she says, "somehow us mothers always find a way to manage."
She met someone two years ago and was struggling to give attention to her chidren, work, a new relationship and PEDSA (PE Down Syndrome Association) and she decided that she would take a break as chairperson but still be involved with the association.
Ilze with Trace when he was a baby
Please tell us in your own words, and from your own experience a bit about Down Syndrome?
Down Syndrome apart from all the medical terms is challenging because you have to put 10 times more effort in, the usual milestones takes longer and early intervention and therapy is key but it’s costly and schooling is hard because there isn’t many options. With all that being said, the reward is so much better and seeing the child get to milestones that some of them don’t reach in their lifetime is life-changing. They still have the same moods, emotions, feelings, etc. so we really have to work with them carefully and make sure from day one that we take care of their future. They generally are the most loving but can get extremely frustrated in situations and they can never be left unaccompanied or in anyone’s care.
Ilze says that seeing Trace meet milestones that some Down Syndrome children
don't meet in their lifetime is life-changing.
How has mothering a child with Down Syndrome shaped you as a mother?
As a mother it made me more tolerant, I see things from so many different perspectives and I am so much more understanding than what I was before. Patience and organisation is key and this helps us to focus on the goal. I exercise a lot as this keeps me fit and my mind strong which help tremendously with the complicated lifestyle. I have made many mistakes and learn as I go but I like to look and learn from others and I know that I must never stop educating myself.
Ilze with Ceri and Trace
How do you manage as a single, working mother?
Some days I manage better than others, but I know that so many of us do it and as I said before, when you have your eye on the goal and you know in your heart you are doing your best, it really isn’t that hard to manage. I am fortunate that I have worked for the same company for many years and my reputation has kept my managers supporting me in every possible way. Metrofile supports so many organisations and have supported me in all my charity work as well as supporting me as a mother of 2 children. There have been times where I am sure it also took a lot of understanding from my employer but I have always tried to make up for it in my work I put out to them.
Where do you draw your strength from?
My strength comes no doubt from being a Christian, I don’t like to dwell on religion but I know that if your heart is in the right place and you try to do what is best for your kids, the rest will follow. In the dark days (and there are many – no doubt) I have leaned on my friends and family. I also have a fiancé that supports me in a way that very few will understand. My ex-husband and his girlfriend are also involved and love and support the kids.
Ilze says that Ceri is probably the most important person in Trace's life
What message do you have for other Downs Syndrome moms and also other single moms?
My message to other moms is to treat them like any other child, each child is different and so is DS children. Trust your instinct and make sure that whatever you do, will benefit the children and their future and if you fall, pick yourself up and do it better every single time. A mother is the most important person in a child’s life and if that is not enough motivation, nothing else will be. Surround yourself with loyal and positive people and be there for others as you would want others to be there for you. I try to live by the motto that I would rather help others than expect others to help me and that always comes back in a positive way.
Please share with us a bit about what Trace is like, who he is, what he enjoys...
Trace is extremely cute and he knows it too, he loves his family, especially his sister and his cousins Jemma and Dax. He goes to Victory Kids, special needs school for kids between 3 and 7 – a brilliant school with 1 teacher to 4 kids. He is battling to string a sentence together but can repeat most words and his family and teachers and therapists understand him. He has been going to physio since 3 months, started speech and OT at 3. Trace also had 3 holes in his heart, which they repaired with open heart surgery when he was 5 months old. He recovered well. His sister, I would say is the most important person in his life and when she is happy, he is happy. He does irritate her sometimes but most of the times she is excellent with him. She understands his challenges and is extremely understanding and protective and I educate her daily. My friends and family are very involved in his life and that makes a world of difference. Our biggest challenge now is getting him to talk as that can frustrate them when people don’t understand what they are trying to say. He sleeps very well and is also independent in his own little way and he loves to learn and do things. He also goes for swimming lessons and has been for the last 3 years as this is something I think he could do for the rest of his life. Who knows, he could one day compete in a special Olympics. I have big dreams for him, just like I do for his sister and I always think about what will benefit him when he is older and can’t go to school anymore.
Trace received open heart surgery when he was five months
Trace doesn’t like lifts, loud noises, shower and a haircut! His sister goes to Collegiate and they over the last year have sponsored about R 7 000 to Trace’s school. His school teachers are unheard of, they are amazing ladies and have done so much for kids with special needs.
Trace attends Victory Kids special needs school
Please tell us a bit about your work with PEDSA?
I started the starfish group with PEDSA (teenagers with DS) – they get together once a month and we send the parents off for 3 hours on a Friday night and try and educate them and incorporate fun with that. They love dancing and socialising as they don’t get this opportunity often. We also have a clinic at Dora Nginza every Monday morning for the mothers that struggle financially. PEDSA is taking financial strain at the moment as we are struggling to get sponsors and our fundraisers take a lot of time and effort and just isn’t enough to cover all the salaries and other expenses. I am involved in every possible way that I can and so is my friends and family but for now I just have too many commitments to be Chairperson.
Ilze (right) is passionate about her work with PEDSA
The children with their father
March 2016 | Comments | 18 Loves |
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