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Mothers with special needs children

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First published August 2019. Updated August 2022

I was a teenager who had a baby. My life was challenging but it was not over. For anyone who has heard me speak I’ve stated: “that becoming Savannah’s mother at eighteen years old forced me to find my strength to live”. I know that this is not true for every teenage mother or for a mother of a child with a disability, but it was true for me.

There are women who started their adult lives in the right career, married their perfect partner at the right time, they moved into their picket fence house. Their children were born without a disability to which both parents thanked God when they counted ten fingers and ten toes. And yet today as parents of teenagers we all face similar challenges in parenting our children. I am really so over this comparison of whose life is better by virtue of being a teenage parent or not, or having a child with a disability or not. Or any other comparison for that matter.

Last Sunday we returned from a trip to Kwa-Zulu Natal where we celebrated Savannah’s birthday. Savannah loves to celebrate her birthday which means she was already on an adrenaline high on the drive to Durban; and when we arrived at our family, she went into overdrive. For those who do not know, Savannah is my twenty-three-year-old daughter who is autistic and has cerebral palsy. It is always wonderful to see her excited. But I was not as enthused. I had already been going through the build-up of her birthday with her for a few weeks. I was mentally tired before the actual celebration started. 

I was in rough shape when I arrived in Kwa-Zulu Natal battling food poisoning on the trip down which triggered a migraine. I also worked in the car and met my deadlines for my respective clients; while Michael drove, Savannah talked and Eli regularly passed food and drinks to each of us. My mind felt numb and tired.

In Durban, Savannah could not stop herself from talking and often her conversations followed the same pattern but with different people. While they were hearing it for the first time, Michael and I were hearing it for the umpteenth time.  She holds to certain points in her conversation as moments for either Michael or me to validate or expound on something she said. We comply because as much as I want to tear my hair out or yell “Just stop”, I know how unhelpful that is to her when she is already in an over-anxious and over-excited state. So I answer calmly whatever it is I need to say to help her in the space she is in.

During the three days we were in Durban, Savannah did not sleep much. I did not sleep much. But she enjoyed a very special birthday celebration with a braai, special gifts and a dance session. Our extended family loved celebrating with her and she lifted their spirits about their own challenges.

Somewhere in the midst of this, we encountered someone who made the point of saying to me that she warns her children not to be in relationships because girls fall pregnant and their lives are ruined forever. During the brief encounter, she avoided looking at or talking to Savannah and kept her own children engaged away from Savannah.

I was hurt about this. More than I wanted to be. And I was cross with myself for letting it affect me. It was so unexpected because no one I know now thinks like that. Or at least they don’t voice it in my presence.

Since returning home I am struggling to get over deep fatigue. There is always too much to be done. Savannah is struggling to adjust to life without a birthday to look forward to and is now fixating on every detail of the fundraiser that will take place in October. I make no secret that in most areas of my life it takes all of my willpower to hold onto my sanity. And sometimes my life works just three hours short of clockwork. For that reason, I can’t take in and hold onto words that have hooks. What I can do is remember that I have nothing to prove to anyone.

I was a teen mother who had a child with a disability and that is only one part of my story.

So here is what I want to make a point about:

  • Becoming a mother when we are in our twenties or thirties or later all poses different challenges. Think about that for a second – the challenges you might have faced. Becoming a mother as a teenager is so much more challenging. Life is not easy today, not for anyone. Teen mothers do not need to be vilified as they try to find themselves while raising a child. There is no point in stating the obvious when they are already living the challenges of being a mother as a young person. The deed is done. Can we please address our own prejudices (which I too have to do on different issues from time to time) and move on and help women to be the best they can be?
  • Parenting a child with a disability is not the worst thing to happen. Yes, there are challenges like limitations on my energy, my time and my finances but my life is not made up of only these aspects. It is also made up of deep love and humanity and care and tenderness and kindness. I will be mothering Savannah until the end of my life or hers. That part makes families like mine different not worse off. I shared more about this in my interview with Your Story Global, The Desirae Pillay Story. (New link added August 2022)
  • Yes, I carry worries that other parents may not have to know. I am not alone in that. Many parents carry fears and worries that keep them awake at night or fuel them to move forward. That is parenting. We don’t get to decide what worries we will have for our children. We can decide on how we will deal with that.

‘Life happens while we are busy making plans. Instead of causing harm as women, can we just take a deep breath and show up for each other? We won’t always agree and we won’t always get along, but we do not need to be the ones who throw the first stones when that happens.

I choose to view my life as a divine plan. I showed up and God showed up for me. Yes, sometimes I wish I had attained that university degree to give my family a better life. But what does better look like exactly? And who has it the best? I have hurt myself for many years and made decisions I regret, all because I tried to make up for being a teenage parent and tried to make my child with a disability fit into a mould that would make us acceptable to society.

I’m over the comparison of what my life should have been or is in relation to other people. I know for sure that I not only love my life, I like it too. And I am madly in love with the people in it. I can’t let anyone diminish my story because it does not meet their standards. That is my investment this month in my mental and emotional health as a mother and a woman. I was a teen mother who had a child with a disability and yet I live.

If you are concerned about your child becoming a teen parent here is what you can do:

  • Cultivate trust within your home. Home is where children should never be afraid to speak their minds and to ask any question. When you shut a child down because you are uncomfortable with the topic, they learn instantly that you cannot be trusted with all of who they are.
  • Acknowledge your own prejudices and fears. Speak to other mothers and fathers and do not be afraid to have your ideas challenged. Our children are facing that every day. If you know what you believe, and you and your family understand the validity of your belief; then you are in a better position to help your child navigate the teen years.
  • Please “let’s talk about sex” to our children. Support local non-profit organisations that are helping women understand their rights and responsibilities. I support Life Choices Pregnancy Centre. They have centres in Benoni and Rosettenville.
  • Equip yourself with knowledge. Many people lean into religious and/or cultural beliefs when the discussion about sex and reproduction occurs and fail to equip children with the right information that is relevant for the time they are living in and for the belief system they follow. If you are going to tell someone NOT to do something, you best have the knowledge and vocabulary to tell them what they can do instead. So again ‘ talk about sex with your teen children. If you don’t, someone else will.
  • Please allow your teenage children to speak to a professional. It speaks volumes to them when we show them that we value their emotional and mental well-being and that we respect their right to privacy.

Then let’s just get over ourselves and be the best mothers we can be – no matter what age we are. No shame.

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