children Archives | A Million Beautiful Pieces

A Million Beautiful Pieces July 1, 2019

Parenting: Is it unfair to other siblings, when one child has a disability?

This is my first blog post in three months. Time is a monster in my life but today, I had to write this, as short or long as it may turn out to be. In a time when parenting has become a central focus for many families, it is appalling to me that many people hold to a belief that in families where a child has a disability, it will always be unfair to the siblings of that child.

Now before I offer some insight into why this blanket opinion is appalling; let me acknowledge that there are families where siblings of a child with a disability have complex emotional needs. Their parents may not be as available to them as they might be to the child with a disability. Consider the myriad of demands on parents in typical parenting units. Can you only imagine what the demands are for parents who parent children with different needs? If you can’t imagine it, then let me offer this first piece of advice here – please do not make any comments or assumptions about what happens in families where disability is part of the dynamic. Zoe Gow’s shares her insight about this – Siblings and special needs: the life of the other child.

I can stand on my soap box here and rant about how if you are not raising a child with a disability, you cannot know how hard this is. You do not know what never-ending exhaustion is nor the mental and emotional stamina we must have everyday to be consistent in therapies and medications while also often trying to keep up with a mind that dances to a tune to which the lyrics and harmony are unfamiliar to the parents. And just when we think we have figured it out, the tune changes again.

Michael pulling Savannah up some stairs so we can browse a bookstore together.

From my soap box, I can also add to my rant that you cannot fathom, the love that keeps us doing this again and again, everyday.

But I won’t stand on my soap box to wax lyrical about that. Instead, I want to offer a different perspective from my own true story:

I am a survivor of childhood and teenage trauma, sexual abuse and domestic violence. I was a mother at eighteen years old to Savannah who is autistic and has cerebral palsy, and other stuff (her description of herself). I was made to feel ashamed by my family and my community because I had fallen pregnant out-of-wedlock, and also that my daughter had a disability.

Savannah taking a short stroll with me .

When I finally got my happily ever after, my parents decided to end their marriage as the sun dawned on mine. While I tried with all my might to bask in the glory of my husband and the fact that Savannah had a dad, the embers of my parents dying marriage caught at my soul and burned me. At the same time I was trying to recover from the loud ringing in my ears that announced that Savannah was “severely disabled” and had no hope of a future. I’m guessing you are piecing together by now that I must have had a couple serious emotional problems. I did but the demands placed on me meant that there was no space to acknowledge my own emotions about both events.

Still I wanted to have another baby. Yes. I selfishly wanted to know what it would feel like to have a child who was more like what I thought a child should be. But people would not let Michael and I have that. When we were pregnant for Talisa, we were told that it was unfair to bring a child into the world who would be burdened with Savannah someday. I was told to limit the time the new baby spent with Savannah because she would pick up Savannah’s “bad habits”.

Later when we had Eli, we were told thank goodness we had him, atleast Talisa will not be alone. (Huh,she wasn’t. She had Savannah.) We were asked how would we manage financially and if we thought about how much Talisa and Eli will be deprived off because Savannah will deplete us.

And while I would not describe our financial situation that way, it wasn’t untrue. But it stung that all people saw was a thing who was here to destroy our lives. They did not see a person who deserved dignity, a good quality of life and who had dreams and hopes for herself. Just because her physical form and her mind had some variants to the rest of us, they wrote her off as no one and nothing. As if no good could come from her. An inconvenience.

Eli asleep on Savannah’s lap while travelling to our holiday destination.

Now all these many years later, Talisa and Eli have actually been “burdened” to care for Savannah, within their capacity. And shocker alert…there are days when Savannah is burdened by the bustle of two neuro-typical siblings. Their unstructured routines mess with hers and they encourage her to do crazy things like play cricket and then horror of horrors they want her to go out and mingle with people. They share insane plans with her about when Talisa has her drivers licence and how they will all three go out partying till late at night.

Oh and yes, those people were right. Our finances have been depleted because caring for someone with a disability in this country is not considered a human right but rather a fantastic opportunity to make money off desperate families who want to ensure their person with a disability is not deprived of care, medical attention and necessary supports. So we can’t give Talisa and Eli everything their hearts desire. However, often what their hearts desire is not what is necessary for a happy childhood. I sleep easy when I remind myself of that.

But maybe all those people were right. This life has been unfair to Talisa and Eli.

Savannah, Talisa and Eli on a recent visit to a Basothu Village.

Then I ask, what of the unfairness to the girl who was molested, watched domestic violence and adultery rip her family apart before she was thirteen, who was responsible for her parents marriage both in its existence and it demise, who was a cutter and a suicidal teenager and who understood guilt, rage and shame as normal. Why had no one told her parents that it was unfair to raise children that way?

Quite simply because somewhere we have lost our way and have aligned good parenting to a standard of living that is defined by where we live, what we drive, where our children go to school, what brands we wear, what technologies we own and what level of entertainment we can afford. Good parenting is none of that. It is very simply having a relationship with your children where you see each other, honestly and openly. The CNN reporter Anderson Cooper said of his mother Gloria Vanderbilt after her passing “I knew her and she knew me. And there is great comfort in that”.

Now I am no expert, but if my heart is my guide I’m going to go out on a limb here and say Michael and I have done something right in how we fostered our children’s relationships with each other. Their lives speak these truths:

While I talk about Talisa studying away from home after her school career ends and if that is right for her; she is in no big hurry to leave home. People who have had this discussion with her are always touched by her contentment and that her personal plans do not include fleeing from her sister and us.
Both Eli and Talisa’s plans include having a family. They talk about marriage and children so matter-of-factly and with such pride, that I’m the one who is stunned wondering what is wrong with these children.
They frequently joke with each other and with Savannah about where Sunday lunch will be held when they are adults, and which of them will take Savannah shopping to get the salad ingredients. They fully expect her to contribute to the lunch by making a salad. You know if she doesn’t, it would be unfair (snigger).
This morning I overheard Eli telling Talisa, that he was up playing on his PS4 till late last night and he heard Savannah call. He said “I was glad to have heard her before dad, because atleast I got to her before he awoke. She just needed help to turn over.” When I approached him about it, he said: “Mum, stop making it weird. She is my sister. And I’m not emotionally scarred from helping her.”

So maybe Talisa and Eli have grown up too fast. Maybe they have more responsibility than they should. In light of what many children are allowed access to on television, the internet and in their gaming, as well as that many children are still living with domestic violence, narcissism and so much worse; I’m going to say that developing selflessness, compassion, kindness, empathy, loyalty and sibling love that no one will ever understand, is not the worst thing that can happen to my children. And no I don’t think it’s unfair to them at all.

Disability Advocacy November 20, 2018

Parenting: Being Courageous even in Uncertainty

This past weekend we attended our friends sons’ birthday party where they had an amazing Wild Animals Educational show. My daughter, Savannah and the birthday boy, Kurt have been friends since they were little children. We have attended a few parties at his home and Maggie, Kurt’s mum throws the best birthday parties for him. When I told Savannah that we would be attending the party, she immediately inquired if there would be animals. She remembered that Maggie usually has an animal show for Kurt’s parties. This made Savannah a bit anxious because unlike Kurt, she does not like animals very much. The only animals she loves are our two Labradors.

Yes, that is a Tarantula on my hand. And yes, it is alive!

As a person with special needs, Savannah requires a fair amount of support in some situations and this time was no different. We had to make sure that she was emotionally and mentally prepared before the party to cope with her anxiety and concerns. One way of doing this was to reassure her that there would be no pressure on her to engage with the animals. We discussed with her that her daddy would sit with her as far away as possible from where the animals would be. She was happy with this arrangement and began looking forward to the party.

On the day of the party, Savannah did not back out from joining us as she usually does and was excited and happy to attend. Kurt, Maggie, her family and friends are some of the nicest people we know and Michael and I were looking forward to being in their company. As expected the party was relaxed and easy for Savannah. She was also very happy to see Kurt. Before the animals arrived, she repeatedly confirmed with Michael that as agreed, he would sit with her away from the animals.

Julian from the WILD ONES Educational Show arrived in his bakkie (South African word for a small pick-up vehicle) full of cages and containers. We watched Julian set up, and Michael and I with some trepidation watched Savannah, watching Julian set up. A few years ago at Kurt’s party, Savannah clung to me for the duration of the party and was miserable and cross because she was so mortified by the animals.

As an autistic person, Savannah’s perception of some situations is different. What might feel fun and exciting to us can be uncomfortable and frightening for Savannah. In order for the whole family to enjoy life together, Michael and I had to make peace with the fact that Savannah will always require some level of support in many situations. Fear is a debilitating emotion and we know that Savannah’s fears are real enough for her, and therefore warrants our respect and patience.

That was the mindset that we had at the party but to our surprise and delight, Savannah decided to join everyone in the area of the garden where the animal show was going to take place. Julian kicked off the show by introducing us to a tarantula. Yikes! I know. I never thought I would hold a spider nor one as scary as a tarantula. But Savannah was watching Michael and I with keen caution, and so I held out my hand and took the spider. Then I held a bearded dragon and a barn owl and the list goes on.

Eli let a Corn Snake coil around him as Savannah watched in amazement.

Then he coaxed her into touching a bunny which we named Peter Rabbit for her benefit. That was one of her favourite childhood books.

Michael who is by no means an animal lover delighted her by holding a tarantula and whistled to a Cockatiel, coaxing it away from my shoulder to his shoulder.

I struggled to fight back the tears when we met the barn owl. Some years back she was caught in a trap and had lost one leg. So she cannot fly and is fully dependent on Julian for her food. As a mother to a daughter who uses a wheelchair and a sister to a brother who is an amputee; that little owl represented the vulnerability and the tenacity that I saw in my daughter, in my brother and in Kurt. More than that, Julian’s care and commitment to this sweet bird spoke volumes about something all of us at the party understand but rarely see outside of our lives as families of people with disabilities.

That is the act of simply caring for one another. Not based on what we will gain or what we will lose, but only for the reason that we are human and we have compassion.

Often people look at Savannah or Kurt and they feel pity. Understandably so because they see themselves as having more abilities than our children do. Often we as families are judged from their limited viewpoint about what we are doing and what we are not doing for all our children. Here’s the thing though: We are here caring until forever. We are constantly finding delight in life no matter what fears and unknowns and awkwardness and frustrations we face. So the pity we get is actually misguided. It belongs to the rest of the world. While our lives take us to difficult places in our hearts:

we know what “unconditional” means.
we know what depths of love and care truly exists in the human spirit, and
we know just how shallow so many lives are because they have not yet learned to give without counting the loss or the gain.

We knew from the beginning that parenting would be a daily exercise of giving of ourselves. It would be letting go of fears and showing up for our children no matter how we were feeling.

What we learnt was that parenting a child who has special needs is sometimes about giving all of yourself. It is about conquering those fears every moment of every day and learning to live with passion and joy knowing full well that your worst fears for your child can become your reality.

We do not know when Savannah will be keen to attend another event so we soaked up the afternoon with Kurt, his family and those glorious animals. We were carefree and delighted as we held tarantulas and snakes. Now that is a great paradox for the life we live, isn’t it?

Being courageous even when our hearts are uncertain.

A very special “Thank You” to Kurt, Maggie, Kevin (Kurt’s dad), Gabriella (Kurt’s sister) and their extended family for being one of the bravest, nicest people we know.

My Story September 5, 2018

I Am Bravely Making The Scary Choice

Have you ever thought why is this my life and how did I get here? Like me, you love the people who are in your life and you have created a beautiful life. When you look back, you are thankful because you realise that life could have been so much more cruel and the challenges you have overcome could have consumed you. So you know that you must be grateful for where you are.

Except there is that pervasive feeling that you are missing something that everyone else has already found. Or that you are just not where you should be.

It’s like we all set out for a walk and then some of us were given a different road map to follow while other people were allowed to follow the regular and more organised route. When we find ourselves back on the same path alongside them; it seems that they have gained skills, which we do not have, and they navigate the path with so much more ease and with some pizzazz too. And we feel kind of old and tired because the cares we have come to know create a fog around us.

There is our group hesitantly looking for the boulders and deep ditches. Planning for the storms that only we believe are bound to come while trying to be a good walking companion to the other group. We feel that the people from the other group have no idea where we have been. They listen and empathise but it is such a foreign journey to them that the only way they can reply is to talk as if they too have known the same fog.

“Oh yes, I found it awful to sleep out in the open. I mean my tent was so thin and I could feel the chill. I so wished I could have brought the warmth of the fire into the tent with me.”
And all the while the rest of us are thinking: “Tent? Where the heck did they get a tent from? We had no tent and we had nothing to start a fire with. Chill?? It was a storm!”

And so the feelings of bitterness and injustice are stirred as we are reminded of how the bends and curves of life have changed us. Everyone has tragedy and the impact of that is relative. However not everyone recovers in the same way and not everyone can start again on new terrain. Not everyone gets to feel the opposite to heartaches.

It’s all well and good that we hail challenges as life lessons that will help people to grow and become better. It’s not actually fair that those same people have to hustle alongside those who got to have the tent and a fire. Yet, that is the story of the human race.

I’d like to think that while we all travel together, there are those who share their tents and their warmth with others. If only for a little while. I’d also like to think that while we all like our stories to be acknowledged; we will also have the humility to know the difference between those that travel with a tent and those that have truly “roughed it”.

Looking back to this year, I tried to have those experiences that I thought would help me to grow and to stop asking how did I get here. I realised that I knew how I got here. What I was actually having trouble with was separating what about being here was what I truly liked and wanted, from what I thought I had to accept.

My career as an assistive technology advisor was something I was really good at but it did not make me happy. Atleast not the kind of happiness that I need. I thought about all the older people I knew, who worked the same job their whole lives and were content with retiring from that with the satisfaction of having provided well for their families.

I wondered what was wrong with me that I could not be like that…. Was I selfish? Was I ungrateful? Am I dreamer?

Maybe I’ve learnt that without the tent, I get to see the stars and without the warmth of a fire, I get to use the fire that is inside of me. I’ve learnt that the map I was given was useless anyway. I know the way to what makes me happy. It means climbing some mountains and wading through some rivers. It means picking berries and swimming in streams. It means having the courage to step off the path again and make my own path.

Here is what I hope you take from this:
*The act of believing in yourself speaks much louder than you will. But adding humility to that belief instead of pride booms even louder.

*No one can be as inspired by your life as you are. You alone know the personal costs. If you aren’t inspired to make your life what you want it to be, then you cannot expect anyone else to do that for you.

*When I become afraid of the future, I remind myself to look back and to see just how many of my worst fears I have already lived through and overcame.

Children are wonderful voices of encouragement. My son in his innocent way reminds me of all this when he merrily sings out at the top of his voice one of his favourite Elton John songs:

“Don’t you know I’m still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I’m still standing after all this time
Picking up the pieces of my life without you on my mind”

Go have a listen. While the video will put a smile on your face, the song is so catchy that I dare you not to make it your own sing along as you plan your next move:).

Photo credits:
Desirae Pillay: Wesley Lazarus
Man walking alone: Michon van Staden

Parent Support February 21, 2018

Children (including children with disabilities) Are Our Future Too

A few weeks ago I came across this infographic from the National Council of Persons With Disabilities which I shared on my private Facebook profile.

The stripping away of the rights of people with disabilities is a lived reality. Whether they experience one or two of the denials or all ten, or more; it is a human rights violation and it is EVERYONE’S job to put an end to it.

So I was pleasantly surprised when two old friends who read that post asked what they could do to make a difference in South Africa to children with disabilities. My answer was simple: listen to people with disabilities instead of deciding for this community what they need. People with disabilities can help us to understand better than anyone what will be the most helpful supports for them. A few days later I was sent information about a joint project by The Solomon Academy and Bishop Bavin School (Bedfordview, South Africa). The Bishop Bavin School Pilot Project aims to educate and accommodate six learners with physical disabilities from sub-optimal backgrounds into Grade six at the school this year.

The learner’s educational plan will be individually designed to accelerate their skill set by ensuring the learners have the necessary technology as well as individual tutoring and medical aid. This project believes that every child deserves the best chance of gaining entrance to university. Furthermore, they aim to increase that number to twelve in 2019.

Now that’s doing something to put the power back in the hands of these learners. This is presuming competence and having faith with works.

The Solomon Academy is also running the Wheelchair Basketball Training Centre Rollout project at the school. Learners will acquire the skills needed to play and compete but the project needs a building to house the court, accommodation for the learners at the school, equipment and more. The aim is to house 40 children in the school by 2020 who will be part of this project. For international funders, this is a great opportunity to get involved in uplifting South African learners from previously disadvantaged backgrounds as well as aiding in furthering the policy of Inclusive Education. A capital prospectus is available for review for this project on request.

If you are like my two friends who want to make a difference, a REAL difference; then please speak to your places of employment about contributing towards a bursary or bursaries for the learners. Companies will qualify for B-BBEE points in either the Skills Development category of the new B-BBEE Scorecard or in the Socio-Economic Development category of the Scorecard. There other financial benefits for individuals such as tax rebates in terms Section 18 A of the South African Income Tax Act. Simply put you can get money back from the tax man when you donate.

It’s a win-win situation both for the learners, the school and for corporate and private South Africa. If you can’t contribute financially, there are other opportunities that will enrich your life even more than what you will do for a learner at the school, such as joining the volunteer program.

To help a child to get an education is the greatest gift you can give; especially when that child due to disability might otherwise be denied access to an education. Let’s stop throwing a pity party when we meet a person with a disability, and let us genuinely help to change the course of a persons life.

Have a chat with Andy Fraser or Quentin Robinson of The Solomon Academy to find out how you can help either with the Basketball initiative or with the learnership programme.

Andy Fraser 083 326 2928 or email andy@solomonacademy.org.za

Quentin Robinson 083 446 6411 or email quentin@solomonacademy.org.za

or Donate to

Bank: S A Bank of Athens
Account number: 3000 000 4682
Branch code: 410506
Account Name: Bishop Bavin School
Reference: Solomon Academy

My Story August 7, 2017

Few people would choose a child like mine

My mother-in-law is sick. Very sick. It’s quite surreal for us because she is the centre of the family. It’s painful to watch someone with so much energy and with such zeal find themselves in tremendous physical discomfort as old age encroaches.

This post though wasn’t prompted by her illness. It was prompted when I saw this on a Facebook timeline “The wise woman builds her house, but with her own hands the foolish one tears hers down”, from the Book of Proverbs in the Bible. I immediately thought of my mother-in-law or “Ma” as we affectionately refer to her.

Mothers of sons tend to have a pretty fixed picture of the ideal daughter-in-law for their beloved sons and Ma was no different. I was definitely not the ideal daughter-in-law. Becoming a mum at eighteen; married and divorced by twenty-one years old and having a daughter with a disability; doesn’t exactly say “I’m the right girl for your son”.

However from the beginning we both knew it would take an effort from both of us to make our relationship work. What surprised me the most was how little effort it took for Ma and Savannah’s relationship to work. From the minute they met, Savannah belonged to Michael’s mum. For Ma the adoption process was a mere formality to give Savannah the same name as her and her family. It certainly helped Ma and I to navigate our relationship with a deeper sense of care.

A few years later when I was pregnant for Talisa, I prayed for a boy. I was afraid that when Michael and his family had another girl; their “own” girl; then they would draw the distinction between Savannah and the second girl. In some families positions and birthrights can be contentious points and the root of much discontent. Also many natural families do not easily accept and value their own child with a disability. I can now admit that with all of this in my mind, I was terrified of having another daughter. I didn’t think I could bear the heartache of watching my already socially challenged child facing rejection.

Because of the rough start I already had I understood too that “belonging” to a family was not a guarantee. I wanted all my children to enjoy that privilege equally, yet I understood I was hoping for something quite ridiculous given the circumstances. On the day Talisa was born Ma phoned me. She said clearly “Thank you for my second granddaughter. I am blessed with two girls when for so long I had only sons and grandsons”. I wept.

Six weeks later Michael, Savannah and I took the new baby to meet her dad’s family in Durban. Extended family poured in to congratulate us and to celebrate with my in-laws too. A few people remarked that finally my mother-in-law had a “daughter” of the house. Ma never missed a beat in reminding the jubilant visitor that she had a granddaughter for a few years already and that she just happened to know this new granddaughter since birth.

Since then Ma in her resolute way ensured that Savannah and Talisa grew together in love and pride for each other and for the family they belonged too. Being a parent in the community of people with special needs I know that very, very few people would CHOOSE a child like my Savannah. In fact many families fall apart in circumstances like these. Not all families can make the sacrifices that caring for a person with a disability requires and even fewer can make those sacrifices without being boastful about it. My husband and his family did just that and they have never spoken about it. They consider it an offence should anyone defer to their relationship with Savannah as being special or if they are told that they are amazing people for “looking after that child”. They do not justify Savannah’s place in the family to anyone. It’s just what family does.

So here we are. My mother-in-law who is really sick, being bossy to me about making sure that Savannah’s 21st birthday is spectacular. It is her granddaughter after all and what Ma and her girls want, they usually get.

As I celebrate Savannah’s 21st birthday this week, I am mindful of how blessed I am. Even though it’s so painful that Savannah is experiencing complex medical problems and my mother-in-law too is experiencing such pain and discomfort; I am grateful to both these women for weaving their beauty through my life. Savannah with all her complexities has taught me that a frail body can house a powerful soul. Ma taught me that when you say you love God with all your heart, all your soul and all our strength; then it’s not hard to love His children.