WHEN Huipi van Wyk (HVW) was asked to take over as director of the Side by Side – Early Intervention Centre that caters for children with multiple disabilities, she didn’t think twice because it’s a reality she is all too familiar with. Her five year-old daughter, Elandri was diagnosed with cerebral palsy at birth, a condition usually caused by brain damage that affects muscle tone, movement and motor skills. The centre was established by German national, Sandra Hollwig who a year ago entrusted Van Wyk to take over. It serves as a day care to about 49 children aged from 0 to nine, who have various types of disabilities including autism, Down syndrome and cerebral palsy. The centre also offers parents and caregivers training and information on how to look after the children. Confidente’s Marianne Nghidengwa (MN) recently caught up with the passionate mother of three at the centre in Katutura’s Goreangab area, to talk about her work and how a lack of financial resources prevents her team from rolling out the project to other regions where there is much need.
MN: Briefly tell us about your involvement at Side-by-Side?
HVW: My third daughter was born five years ago. She was diagnosed with a severe disability to a point where they didn’t think she would survive the first year. The first three years of her life, we were in a hospital, constantly hoping and praying that she’ll survive just another night. That changed our lives completely. It changed the way we looked at life and the way we interacted with not only each other but people around us. It also changed the way I looked at what the purpose of my life was and what change I will leave behind. When she was diagnosed, we started a trust for her to raise funds just to get her through because the medical funds were exorbitant. Her medical aid costs were as much as a child in university per month. Within three months after opening the trust we didn’t need that money. We had enough and everything fell into place. I could stop working to look after her full time. Because my daughter was diagnosed with cerebral palsy, suddenly I started seeing children with similar conditions. So we used the funds on them. I started working with the mothers because for the first three years of my daughter’s life, I knew what it’s like and I knew how dark it is and how desperate one is to fight for life and at the same time how one wants their child to give up because they don’t want that life for them. So, it’s a dark and lonely place to be. I started building relationships with these parents and for me it was more a thing of can I get this mom through every day. I wanted a comfortable life for the children but for that I needed to get mothers to understand what they are going through and staying positive. I met Sandra Hollwig who started the centre in 2013, two years after my daughter was born because I wanted to know how to help with these families. Last year her work permit was declined, and she asked me If I could help. I don’t have the qualifications, but I am a qualified mom. Everything I know is not because I studied for it but because I saw it and went through it. I know cerebral palsy, I know what the children need and what their families need. Even though people refer to these children as abnormal, that is my normal. Our daughter is our normal and if she is removed from our equation, we are abnormal. I try to teach the community not to look at these children as special people, there is nothing special about them. Once we start changing the way we see disability, we start realizing that life is valuable.
MN: What does the centre offer?
HVW: Side-by- Side offers therapy with parents and children. We also take in children during the day. We have 18 children who come to the center from 07h00 to 4h30. When they attend therapy sessions during the day, we do play activity and life skills. We teach them rhymes and how to sing and whether they can speak or not, they can hear, and they can experience. We teach them routine, so they know what is coming next. We teach them expectation and how to interact with each other. Every child also has a one-on-one session because their needs differ. We do school preparation for them and whether they can talk or not we know there is a possibility for them to go to school.
MN: What positive change have you seen in the children benefiting from the centre?
HVW: There is positive change in children, but I can speak more for the families because that is what we are focusing on. There is improvement in children because we teach them to reach milestones they cannot do for themselves. Taking it further, can you imagine as a parent not having any hope watching a child lying on a bed, not having a chance at life and then suddenly the child starts laughing. As a parent, you find a way to get through every day. It’s about improving the household. The project gives these children what they need during the day to make their parents feel that they are not neglecting them.
MN: What are challenges and opportunities facing the project?
HVW: Challenges are financial. A child having a disability cannot be fixed overnight. You don’t start with physiotherapy and five years later you stop. The older the child grows, the more physiotherapy the child will need. Therapists are very important because the children are going to need therapists until the day they die. I need to teach them how to do something every day of their lives until the day they die. For instance, I must pick up their hand and brush their teeth, so they can remember. If after a week I don’t do it, they forget. For this centre to appoint the right therapists for the right children for the right reasons, we need therapists here that the children can trust. This centre is nothing without the people committed to helping these children. The salary they get is minimal. The positive thing about these salaries is that we are empowering our locals. We give them training in our setup to work with the children. When they go back to their communities where these children come from, they know how to uplift the families.
MN: What goes into the rehabilitation of new children?
HVW: We evaluate the child and the mother. I look at their relationship to see whether there is a connection. My job is to make sure that in a safe environment the mom understands what is going on. We try to get that connection back and then continue teaching the mother how to do activities at home to keep the child’s living standards better.
MN: What is the most rewarding part of working with the children?
HVW: Seeing the success not because of what they have achieved but because of what they feel. When you look at a child, you can see that they have not been having interaction. Once you start interacting with them and teach them something and you see they understand it, there is a change in their face and how they interact with you. The moment you feel you have this child and their family knowing that you will be there until the bitter end, it’s rewarding. We are not charitable if we give and never teach one how to stop receiving and try standing on their own feet. If we can help a family and give the mother information on how to love and uplift their child while they uplift their own spirit, there is huge success in it. There is huge success in watching a mother walk away carrying their child differently than they did coming in. Its small things that the world doesn’t see that we do. Maybe the child won’t survive until they are 10, it doesn’t matter. What matters is that when a mother buries their child she will know she knew what the child needed, and they had a good life. That is a success.
MN: What is the most difficult part working with them?
HVW: Losing the children is the most difficult.
MN: What advice do you have for parents who find themselves in such situations?
HVW: Firstly, allow yourself to cry, don’t keep it back because then you start being in denial. Get help, don’t do it on your own because you can’t. The one thing you can take from a person to make them hit rock bottom, is their child. The moment one’s child is taken, everything ends because we live for them. Don’t allow yourself to not get help once your child is affected, because if you do not get help, you will stay there until the very end. The sad part about that is, the life of that child whether they lived a week or 10 years, would have meant nothing if you die with them.
MN: So many parents depend on you for strength, where do you get yours from?
HVW: My faith. I didn’t have a relationship with God, but he took me on a personal level since my daughter was born. The first scripture I got from him is, he can be strong in my weakness. Suddenly no medication or medical doctor could save my daughter and the only other way of surviving was to turn to him.
MN: Just what do you do for a little fun?
HVW: My husband and I play bowling.
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