siblings 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.

A Million Beautiful Pieces February 7, 2019

Should siblings be responsible for each other? And if so, is that okay?

Savannah loves this photo of her with her siblings.

When parenting a child with a disability many people offer advice or opinions from their perspective of what would be best for a family like ours. People are not shy to give voice to the potential problems which they believe we face. Specifically, people assume that when non disabled siblings are raised with a sibling with a disability, it will cause some level of hardship in some way to the non disabled sibling. The idea that non disabled siblings will be responsible for their disabled sibling, is frowned upon. This blog post, like most posts that I write, is about giving insight into our lives in the hope of giving other families the vocabulary to speak their truth.

When Michael and I became pregnant with our second child Talisa, we had no fears about anything concerning the new baby. It might have been due to my new-found faith or it might have been that I was still in the honeymoon phase of my marriage. When Talisa was born unlike her elder sister, she was not a person with a disability. She was a demanding baby though and tested my resolve in many ways. But I was happy to have two children. We were very hopeful about the future for our family.

Sadly few people shared our delight. Some people thought that they should educate me about all the problems Talisa was going to experience because of her relation to Savannah. One person thought that Talisa would likely have poor speech because Savannah had a speech impediment. Another piece of unsolicited advice was that it was very unfair to Talisa to be born into a family with a person with a disability as she would be “burdened” with her sister. Someone else suggested that I should limit the time that the girls spent together. The list goes on.

Eli shares Savannah’s passion for gorillas. She was in awe of the wind-up gorilla toy he gave her for Christmas.

In hindsight I think most people were expressing their own fears about parenting a child with a disability. Of course, it was challenging. Especially in the early days when in many areas of development, Savannah and Talisa were on the same level. Even though there was a six-year age gap between them. While adjusting to mothering two girls with different demands, I was also trying to learn all about Savannah’s diagnosis. Savannah was a diagnosed with cerebral palsy. She was non speaking and had other issues that I could not quite understand. She was only diagnosed as being an autistic person when she eight years old. I can only describe the first three years of Talisa’s life as the ‘twilight years’.

By the time Eli came along we were a little more settled as a family unit. Both girls were besotted with him. Together all three formed their own unique relationship. I know many of my friends who have a child with a disability and non disabled children, often testify that having more than one child is the best thing they did. For those parents who choose to only parent their child with a disability, I understand that too. Raising children today is demanding in many ways, and at different times I struggled with the demands of being a parent. More so I struggled with the enormity of Savannah’s special needs. Please do not ask me if it is better to have more children or not after having a child with a disability. There is no better or worse when it comes to children. It is just about working out how to be the best for yourself and for your child or children.

Talisa reminds me that some things are not deep psychological issues. Some things are just what siblings do.

So fast forward to the present day, when Savannah is twenty-two years old, Talisa is sixteen years old and Eli is eleven years old. Talisa and Eli have some responsibility for Savannah. I was aware when both children began assuming certain areas of care for her. While those old voices sometimes echoed in my mind that my younger children shouldn’t be responsible for their sister, my children kept me in check.

My first check was a few years ago when Talisa spoke at an awareness event. She said that she does not often tell people she has a sister who is a person with a disability because she does not want to hear “Oh shame.” She continued to explain that when she meets the non disabled siblings of friends, she never responds with “Oh, shame”. She is a cheeky girl. Her point simply being that Savannah is just her sister like all other sibling relationships. While their relationship has different nuances to most siblings, she does not appreciate that “Oh, shame” is the response it should elicit.

A few more checks came as Eli grew. Being a boy, he easily slips into the role of protector. He enjoys teaching Savannah pranks and jokes. He helps her with: tying her shoelaces to assisting her with her communication software to exercising with her. When Michael is late in returning home, Eli helps Savannah with her bed time routine. (She does not stay asleep whenever I help her to bed, and somehow sleeps better when Michael or Eli put her to bed). I had to stop thanking him for what he does when he asked me to “stop making their sibling stuff awkward with my mum stuff”.

In homes like ours, where one person is vulnerable and will remain so for the rest of their lives, the levels of care and protection that develop between the family members are unique and precious. Few people outside this type of dynamic will understand it. We are always thinking about what might be too much for the non disabled siblings as far as being responsible goes, against what is vital to building strong sibling bonds. For many families siblings are more trustworthy than a professional care giver or another adult. In truth, one day they will be the only people who will oversee the care of their sibling with a disability.

This week as Savannah began her new therapy program, we created a group on WhatsApp for the team so that we can easily transfer information between home and therapy. Both Talisa and Eli are included in that group. As her siblings they share all her milestone moments with her as well as her day-to-day life. It is offensive to them when they are excluded from important areas of Savannah’s life. Talisa asked me once why people make a big deal about her role in Savannah’s future? She said that most siblings have some level of care and loyalty towards each other. How can anyone expect her to be detached from Savannah’s life when they both become adults?

Little brother is watching. Eli keeps a watch on Savannah’s YouTube browsing.

In raising our children, we did not heed the advice of anyone who thought that Savannah would be a burden to her siblings. We simply raised children in a home with a family that loved each other. Like all children, Talisa and Eli go through all the usual issues and triumphs of life as they grow. They have their own challenges, their own dreams and their own goals. Unlike other children they learnt a little something about tolerance and patience early in life. I think the best lesson they learnt is about accepting people for who they are. They are not angels or better than other children. They are simply siblings who get to understand loyalty and love much quicker than most.

For all parents of children with disabilities, we live with a constant fearful thought that we try to ignore. What will happen to our vulnerable children when we die? When we have more than one child, none of our children will be alone in the world. Especially our child with a disability.

Each family is different and every sibling deserves a life that is true to who they are. As parents we are responsible for building that life. Please think about that when you meet a family raising both disabled and non disabled children.

If you found this post helpful, you might also enjoy reading about Being Courageous Even In Uncertainty.

My Story October 16, 2017

You need only be your own HERO-A letter to my second daughter for her birthday

(Published with permission of Talisa Pillay)

Honey-girl,

It’s your birthday week. I am so excited for you. You are growing into a young woman so quickly. I love how your ideas are changing and how we can talk more and more about more complex “girl stuff”. Yet, I am also acutely aware of how much time we have left before your life choices become all your own.

Three Christmases and then you will be finished with school. Yikes! That’s sobering to say the least.

Maybe seven or eight Christmases until you graduate from University. I’m properly freaking out!

Oh my! You may be wonderfully in love by then and God willing; your life will unfold beautifully and gloriously before you. I’m holding back the ugly cry now.

Talisa, as a young girl the world will tell you that you can do everything that any man can do because you are equal to a man. Please remember while you very well can do many things equally to a man – you do not have to. You have nothing to prove. Not to anyone.

What they also won’t tell you my love, is that you as a woman will be expected to do as much as a man. Yet a man is not expected to do as much as you will be expected to do. He will never need to prove himself. Yet you will be judged for how you keep house, whether or not you compliment your husband in action and character, how you raise your children, how competent you are in your career and what you achieve in all these areas. As a woman you will be expected to keep it ALL under control. A man’s limits are carefully defined and respected. A woman is perceived to have more limitations but also expected to exceed them all the time.

Don’t allow these standards to define you as a woman nor allow it to make you fearful of one day being a wife. Your worth as a woman is not based on how much you do or don’t do. It is only based on a simple truth: You are fearfully and wonderfully made and God loves you. You do not need to earn His love or any man’s love for that matter.

You need only remember that in order to “love your neighbour”, you must first “love yourself”. That begins with R-E-S-P-E-C-T. I hope that the respect we have for each other in our home irrespective of gender, abilities, disabilities, age and station will stay with you forever. When you respect yourself, it is easy to know what to allow into your life and what not to allow.

Also hold onto “living in love is living in God”. That simply translates to being joyful, peaceful, long-suffering, kind, good and faithful. As your dad and I have done in our lives, we hope that you will write these on your heart. I promise you that these traits will carry you even when you think you can’t make it.

Honey, the world will also tell you that your sister with special needs is your responsibility. In many ways they already keep trying to elevate her in ways that can be hurtful to both you and your brother; often diminishing you to just a caregiver. I am so incredibly proud of your depth of understanding of people and their intentions.

You have not become bitter or disrespectful. You have responded maturely never allowing their emotional overtures to define the relationship between you and Savannah. May these insights guide you to have an understanding heart and to also guard your heart because no one is allowed to diminish your value and uniqueness. Remember, fearfully and wonderfully made?.

You already understand a little something about loving someone unconditionally. You understand what selfless means and that “what is fair” is a complex concept in our lives. I am in awe of how you share a deep friendship with your brother, who I am sure is often much easier to be with than your sister.

Yet you never show that. Not even to me. Not even on the days when you just feel melancholy. Even then your fussiness in making sure that Savannah always looks good and taking the time to do her make-up; often dismissing me from the equation is heart-warming. May you always be tender; doing in quiet for people what others would be applauded for.

We have experienced the opposite too, haven’t we? When people condemn me for only speaking about Savannah and accusing me of not seeing YOU. I won’t give up the details of how we live in love with each other. Not even here. I respect your privacy too much for that. I love that I get to be your mum without all the scrutiny. That is the gift of your life to me. Thank you.

So, this birthday I want you to remember we have not raised you to be anyone’s hero but your own. When life becomes too overwhelming; there is nothing wrong with slowing down, thinking it through and starting again, and again, and again because a New Day always comes. I know. You were my New Day.

Happy birthday my honey. I love you!

Mum