Parent Support Archives | A Million Beautiful Pieces

A Million Beautiful Pieces July 19, 2020

Are all children a blessing or are only children with a disability a blessing?

I am asking this question for myself and on behalf of other parents to children with a disability: Are all children a blessing or are only children with a disability a blessing? Often when people learn that I have a child with a disability they reply with “she must be a blessing”. Well, all children are a blessing.

And, they contradict the above and confuse me when expecting a baby either by pregnancy or adoption and say: “as long as the baby is healthy and please God has no challenges”. Doesn’t everyone want a blessing?

For years I have had to bear up against ignorance, unkindness and the veiled arrogance that accompanies a belief that another parent must be better than me because their lives are not touched by disability. Too often people repeat socially acceptable phrases about their wish for an unborn baby without thinking about who is listening to them. They babble themselves into a verbal quandary and then when they realise a parent like myself is part of their audience, we are stuck with having to process the funk created between us.

Such funk moments can be made up of and are not limited to the following:

1. “Thank God (my baby/her baby/their baby) doesn’t have any problems.” – Please if you must say this, do not say it in the presence of a parent whose child actually is a person with a disability. Parenting children brings different challenges. Believe me, I know. From parenting a child with a disability to parenting two non-disabled children, there are days I’m more thankful for the challenges I face with Savannah. Talisa and Eli have no issue with me saying that, because equally I can be heard expressing that sentiment when Savannah tries my patience. That’s the reality of being a parent.

It is challenging in the best of families. After having worked with families whose children acquired a disability later in life due to a medical condition or accident, I witnessed first hand how remarkable and unfathomable the love of a parent can be. How in the face of tragedy, a parent can cling to blind hope for years. So maybe when faced with sharing news of a new baby, we can try to say “Please God grant the parents strength and wisdom as they learn to love unconditionally”.

2. “You are amazing. A SuperMum.” – Please don’t dwindle my sacrifices, moments of heartache, frustration, resolution and tears in our fight for Savannah’s right to equality to “Super” anything status. When in truth we are not welcomed into society as Superheroes usually are. SuperMum, I am not. Just Savannah’s mum; doing and being what she needs so she can live a life with dignity and respect. It comes with a ridiculous load of heartache and loneliness. Not perks of a Superhero. I know by walking with Savannah through this life, trusting God’s love for her and for myself, that we both have discovered an extraordinary universe of faith, hope and love still unbeknown to many Superheroes.

3. “Oh wow autistic! Your child must be a genius.” – Why yes, if your definition of genius is being able to remember what every member of her family wore to church every Sunday for the last few years, then Yes! But said child may also be unable to work out how to dress appropriately for different weather conditions. For example, said child can wear shorts and T-back when the weather is below five degrees celsius.

People have different abilities and a parents’ love is not measured by what level of ‘genius’ their children may or may not possess. Frequently I have to debunk that genius definition of autism with: “No, she is not like Temple Grandin or the guy from Rainman. She is amazing in her own unique way, just not like those people.”

4. “You make it look so easy. But I couldn’t be like you”. – No, you can’t be like me. You can only be like you. You can only be the parent your child needs, not who my child needs. Statements like this, while intended to be flattering actually have the opposite effect. They convey the idea that there is a limitation on a parents’ capacity to love and those who exceed that capacity belong in a special group. It just adds to making a parent of a child with additional needs, feel more alienated and increases the likelihood of depression and loneliness. So please for all our sakes, parents and expectant parents, lets just go from the premise that parenting is the most profound role anyone can ever have, without making it about standards or comparisons.

My daughter, Savannah is a woman with a disability and can be frequently heard praying for other people and never for herself; because she sees herself as “Whole and Happy”. Talisa is an almost adult dreaming of her future where “Whole and Happy” will not be precluded by having a child with a disability. Their experience as sisters and as women who appreciate their own individuality without being made to feel that one is more of a blessing than the other, is rich and deep. So much so that when Talisa starts planning her motherhood journey, it will not be overshadowed by the notion of what she can’t be to someone she has yet to meet.

In my different areas of work and service, I get to speak to women from different ages and walks of life who are struggling with their own womanhood, motherhood and identity. Their stories matter and take up a great deal of my heart. But it is my own daughters who already have a residency there.

So I wrote this for my daughters, for when the world tries to rob them of their joy as women who understand a little something about ‘extraordinary’. I wrote this for women whose lives touch mine. For the expectant mother somewhere who needs to know this. And for the mum who is considering leaving her baby somewhere, anywhere because someone or something gave her the idea, that she is not capable.

I wrote this for the child who cannot fend for themselves and who may never be able to do so or may need much help because of having a disability. I wrote this because tonight they will be left in a hospital or a park or in a drain, unwanted by their parents but equally unwanted by the same society that will demonise the parents for giving them up. My own lived experience teaches me that too few people support parents with children with disabilities and even fewer will ever be heard confessing to welcoming such a blessing into their home.

A baby who is differently-abled, will need their family and their community to show up for them in remarkable ways. A child who is going to need extra help, extra support, extra anything, can also be the catalyst for ‘extraordinary’. The ‘extraordinary’ that changes our definition of success from counting accomplishments to being unable to count the depth of love a parents heart can hold while it tethers between heartbreak and joy over and over again.

This is the closest example of how much God loves me and what grace is available to me: That I am able and willing to love sacrificially and unconditionally.

This is also why I believe a blessing awaits anyone who welcomes a child. No further description of the child is needed. Selah

I have three children: Savannah (23 years), Talisa (17years) and Eli Michael (12 years). Savannah was born when I was eighteen years old. I was a single mother before marrying Michael. Savannah is autistic and is a person with cerebral palsy. She cannot live independently and I am her primary caregiver. I worked as an Assistive Technology Advisor in the disability sector, served in the autism community, and am now employed in the child safety sector. I work for a non – profit organization that is a place of safety for babies who ultimately are adopted. I am also affiliated with another non – profit organisation supporting pregnant women in crisis. I have the rare insight of holding a space where these three groups meet – disability, unwanted babies and pregnant mothers. In facing my own parenting struggles and through my faith journey, I learnt a great deal about what people say they believe and what they actually believe. And so I write for the purpose of sharing different perspectives. I write to encourage a thinking line around being kinder and more considerate of other people’s experiences in the areas of parenting, childhood trauma and disability. I write because I know what hopeless felt like when I believed the wrong words. I write because I know that Faith, Hope and Love abide.

A Million Beautiful Pieces August 14, 2019

Women’s Month: I was a Teenage Mother to a Child with a Disability – I’m So Over Being Shamed for Both

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.

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 15, 2019

Valentine’s Day was not what we planned:heartbreak

The last few days, our eldest daughter Savannah was excitedly preparing to celebrate Valentine’s Day. This happens in two parts: exchanging presents and baking for the actual day, then a Valentine’s party with Savannah’s squad on the weekend. Talisa and Eli love this celebration because Savannah’s energy is directed at making them happy. Yesterday afternoon, we should have been enjoying the fruits of Savannah’s labour. Instead Valentine’s Day was not what we planned: Heartbreak.

As we are still figuring out how best to help our children through this, I am not going to disclose which one of my children it is. Nor will I explain where this happened and who was involved. We are affording our child who experienced this horrible interaction the opportunity to recover.

What happened was this:

One of my children was in a group with other children of the same age and an adult was present. An unplanned discussion happened about people with disabilities. One person made the following statements:

*People with disabilities should not be kept alive because once their parents die, they become a burden to their siblings.

*If I had to choose between having a physically disabled child and a mentally disabled child, I would choose a mentally disabled child because there are medicines to help them.

*Being disabled is no quality of life because they are suffering.

*What did Reeva Steenkamp see in Oscar Pistorius, because in his normal body he only came up to her waist?

*People born without limbs are pointless.

I can’t write all of what transpired out of respect to my child who had to endure this. The rest of what was said is even more shocking. Up until this point in our lives, Michael and I faced the prejudice, bigots, ignorance, and stupidity as Savannah’s parents. Now Talisa and Eli have to face this.

I worked in the disability sector. My brother Darren Moodley is an amputee. Our lives have been almost fully immersed in disability issues. Therefor my children do not know what different is. In fact they hold to the premise that everyone has some form of “disability”. It could be emotional, spiritual, something unseen. Most just cover it up well. Yesterday, my children realised just what prejudice looks like. It’s a trident that pierces and causes unbelievable pain. Now they are bleeding.

As Savannah’s mum, I can’t fully capture the emotional highs and lows I have experienced because I am ill-equipped as a person to support her. I can’t explain all the ugliness I’ve faced within myself. In learning how to be Savannah’s mother, I lost many things and I was never perfect. But always and without a doubt being Savannah’s mother taught me what unconditional love looks like. Not that I have been good at giving unconditional love myself. God gave it to me and Savannah lives it out for us everyday. Within all my times of complaining and in all my failures and mistakes Savannah only ever sees the best in me.

And that is the greatest gift Talisa and Eli have: their sister loves them and believes absolutely only the best of them. She finds no fault in them. Some would think she is an inconvenience to their lives. Siblings of children who are different know that love and convenience do not go hand in hand. Love is messy, unpredictable, confusing, frustrating, intense, forgiving, rejuvenating, strengthening, courageous, fearless, and necessary. This love teaches them the meaning of life: Mercy and Grace. Talisa and Eli understand this in a profound way that many adults struggle to grasp. When a person is without mercy and grace, then I can only weep for them. What a lonely, painful fall to reality they will face!

There is a saying within our community of people who are differently-abled “Having a child with a disability is not the worse thing to happen. The worst thing to happen is to raise a child who is cruel to people with disabilities.”

Please understand this. The world is changing. Mothers and Fathers and Brothers and Sisters are standing behind the community of People who are differently-abled. We are not sitting in the corners, cowering in fear. We are proudly out and about, displaying the beauty and glory of our community. Please empower your children with what is appropriate behaviour and speech about people who are different. Please ensure that your schools, social groups and religious organisations understand the rights of people who are different. Insist that your children understand and practice basic human courtesy and care. For the love of God, just be KIND!

The world is changing.

For today, my family will weep that we must suffer not because of who Savannah is. Because of who other people are.

I DO NOT CRY FOR WHO YOU ARE (Author Unknown)

Tears have stopped falling
On the fragments of my dreams,
I no longer mourn illusions
Of yesterday’s reality.

Tears that fell so often,
Almost every day,
But that was when the rain poured down
And the sky was always grey.

Now I feel the sunshine,
And the sky is blue again,
I’m living on a rainbow,
But I still cry now and then.

I do not cry for who you are
Nor what will never be
My pain’s in the confusion
And the vulnerability

My frustration’s with a society,
That cannot see you’re mine,
My anger’s to the ignorance,
That will never try.

My fear is from uncertainty
That increases over time.
My guilt is deep inside my soul,
Each time they make me cry.

I do not cry for who you are
Nor what can never be
I cry because they look at you
But never really see

They don’t see how the differences,
Could make the world complete,
They can’t all live on rainbows,
It’s just not meant to be.

You are not responsible,
For all that we’ve been through,
I would not change you for the world,
I would change the world for you.

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.

A Million Beautiful Pieces January 22, 2019

My Greatest Gift This Year: Journey To You (Part Two)

Today’s post is about a new idea I used to develop a positive mindset for Talisa and Eli as they began the new school year. It seems that my participation in Journey To You is a gift that keeps on giving as the idea was one which I learned at the course. I posted part one of this journey a few weeks ago: “My Greatest Gift This Year: Journey To You”.

When I participated in the life coaching course Journey To You, we learnt a valuable exercise about self-awareness and self-love. There were many coaches taking small groups throughout the three-day course. My coach was Maligay Govender and this was one of the processes which she guided me through. I had to list positive attributes about myself on an A4 length of page. It could be what I thought of myself and what others have said about me. It was incredibly difficult to do because I saw myself in a negative light. With encouragement and friendly firmness Maligay encouraged me to get that list of positives done.

When I thought I was done, she challenged me to draw another column and to add more positive words about myself. It took a very long time for me to do that. Imagine that. I who believe in seeing life with possibility and beauty, could not find many positives attributes about myself . When I had filled out as much as I could, Maligay encouraged me to read it out loud with the words “I am” before each descriptive. There I was, feeling a bit silly but at the same time knowing I was standing on the edge of a big change. So I began:

“I am resilient.”

“I am loving.”

“I am wise.”

“I am resourceful.”

“I have nice eyes.”

“I am the best mum ever.” (Savannah frequently tells me this).

“I am soft.” (Eli’s description of me).

“I am a role model.” (That is how Talisa describes me),

and on and on I went listing off 43 positive aspects.

Maligay added her own descriptions about me which were very touching and it took me by surprise. She encouraged me to speak slowly and to think about each attribute. I can best describe the experience as a computer that had crashed and during this exercise was finally rebooting. Then I was back online. (I know it is strange that I compare this experience to a computer but I worked as an assistive technology advisor so it is still the lens with which I see some aspects of life.)

Last week I wrote about the importance of being mentally and emotionally prepared for back-to-school in the post Back-To-School:How you start is how you finish. I found great value in the exercise that I learnt at the course and introduced a simplified version of it to my children in our back-to-school preparation.

Talisa and Eli struggled to write down positive attributes about themselves. They both said it was easier to write down all the negative beliefs they held. I wonder where they got that from? Unfortunately they got that from me. It was a good lesson in the importance of mirroring self-care and self-love for children. What was even more meaningful is that Savannah was also part of making a list of her positive attributes. I verbally listed many positive words and she chose which attributes best described her. Then I wrote it down for her.

An example of positive personal attributes or character traits for children from http://www.teachingmaddeness.com/

When Talisa and Eli finished their list, they read it aloud with the words “I am” before each description. It was so moving to watch how their faces came to light and their posture changed as they went through the list. Like Maligay taught me to slow down and to be thoughtful about each description, I encouraged Talisa and Eli to do the same. It was a singularly empowering exercise and one that both children found enormous value in.

I realised that no one actively pursues holding onto negative beliefs about themselves. Yet life has a way of subtly bringing those negative beliefs to us as if it would be arrogance to think good of ourselves. Yet imagine going through life facing all those negative beliefs with a repository of positive personal truths to combat it with? It would simply be a Journey With Ourselves.

“As a man thinketh in his heart, so is he.” Proverbs 23v7

The pursuit of academics and all it entails must also be a journey of self. Not one that destroys our children or costs them their emotional and mental well-being. Children are children for such a short time in the story of their life. Being self-aware and loving oneself is surely the route to loving others and to creating a fulfilling life.

Some of the coaches who guided the participants.

If you are feeling stuck in your journey, why not book a course with Journey To You. Not only will it free you to be yourself. It will empower you to be the best version of yourself and to mirror that for your family. For more information about the next course, click here.

And finally, I dare you to make a list of all your positive attributes and to say it out aloud. Let me know if you do. Believe me when I say that there is no journey worth taking like a Journey To You.

Thank you again to all the coaches, the participants and Deon Greonewald for this wonderful journey.

A Million Beautiful Pieces January 15, 2019

Back-To-School: How You Start Is How You Finish

I have not written a blog for two weeks. And now here I am. I feel rather delighted with the quiet time I had and with all that I have achieved in these two weeks. One aspect that took up most of my time was my investment in my children’s back-to-school preparations. That required focused time and attention from me. It is such an important part of my year that even my Christmas preparations can’t compare. Why? Well, because I am a big believer in “how you start is how you finish”.

My hope is for my children to aim for the highest version of themselves with self-respect and self-love.

In the days leading up to the first day of the new school year, we (being Michael and I) encourage our children not only to start getting to bed a little earlier; we also coach them into thinking about what personal goals they want to set for themselves for the year ahead. Our back-to-school preparation includes providing our children with: a safe space to face their fears, plant their hopes and to acknowledge what supports they already have for the challenges that the year will bring.

One of those challenges for our family is when Savannah has a medical flare up. This happens at anytime during the year. Sometimes she is admitted to hospital and that means our family routines change drastically. Both Talisa and Eli know what it feels like to face an important exam or event while feeling worried about their sisters’ health. It would be neglectful of us to assume that the concerns we deal with regarding Savannah do not make an impression on Talisa and Eli. Anxiety is a real issue for teenagers and too often they are not taught helpful ways to deal with this. Anxiety in teens:What it looks like and strategies to help from Parent24 offers some insight into this topic.

In our home, Michael and I have a golden rule all year round but most especially during the month of January: we ensure that we are available to Talisa and Eli to listen to anything they have to say. We believe that “how you start is how you finish” and we want them to start strong. What they are saying or not saying as they begin the daily school grind are markers that guide us on how best to support them. We know that as teenagers our children need us to listen more and to lecture less. Sometimes that can be really hard to do as parents. An educational psychologist has been part of our parenting journey at different times and we value the process that we went on with them in helping us to help a specific child at a specific time.

Savannah being autistic meant that our then educational psychologist had her work cut out for her in teaching us neuro-typical parents a totally different way of thinking about parenting. We learnt how our emotions affected Savannah when we did not understand what she needed. We learnt that we caused more anxiety if we indulged ourselves with unbridled expressions of emotions. It only exacerbated the issue at hand as Savannah’s anxiety increased and we became part of the problem when we should have been part of the solution. We learnt how to express ourselves in a way that became supportive to Savannah without any outbursts from her or us. You could say, having learnt to respect our child’s right to a space that is calm and patient, means that Savannah trained us well for her siblings. 🙂

Generally teenagers are usually more emotional yet less able to express that in a way that will be helpful to themselves. We want Talisa and Eli to feel free to express their fears and hopes without the worry about whether or not it will displease us. We want them to feel brave to go to every corner of their souls to seek out what might be possible for them and to be able to explore those ideas with us. Even if we do not understand it, it is more important for them to feel free to express themselves than for us to limit them to only our own understanding of them and to our dreams for them.

This time of planning, discussing and listening to each other before the school year consumes us is empowering for all of us. Our plan includes our goals, how to achieve that and what supports are available to each family member. I wrote about this last year in my post The Safe House. Each person writes down their personal goals, their academic or career goals, their spiritual goals and we agree on a goal or goals for us as a unit. We talk about what we have written and if necessary we discuss how the family routines or resources will be restructured to support relevant goals. We also write down how we plan to achieve each goal and by when we want to accomplish each goal.

Having a child who is autistic and medically complex means that Michael and I cannot completely plan what she will need during the year. But sharing our goals together means that we are all continuously looking out for each other. Not only are Michael and I mindful of being available to the children and being realistic about what they need; the children too become more involved in how we function as a family. We found that as they naturally assume more responsibility for their sister than she will ever be able to do for them, they also naturally become a support system to each other and in some ways to us a well. This is not a bad thing for children.

We discuss different areas of our lives as we plan for back-to-school. Some areas require more detailed discussions and others may require a less detailed discussion. From having daily routines and acknowledging how each of our routines impact each other, to deciding who we will pursue relationships with and who we will cool off from (if anyone) are all part of these plans for the forthcoming year. We pray for the year ahead and for each other.

Talisa and Eli were all smiles on the first day of the new school year.

During the year Michael and I make a habit of checking in with each other and with the children about their plans. We also celebrate when the children achieve a goal (Michael and I are learning to do the same for ourselves too). At the end of each school year, we review this document. It is empowering to see how much each person achieved. If someone did not achieve a goal we discuss this together. We facilitate a discussion to help our children reflect on themselves for answers as to why they did not achieve a goal. This has been of greater significance for them that we do not accuse them. Ultimately, we want our children to take responsibility for the pursuit of their dreams. We want them to be brave enough to be self-aware of their own shortcomings. Mostly we want them to learn how to pick themselves up and to persevere instead of falling into self-criticism.

During all of this, the very personal goal I set for myself is to be a parent who helps her children to aim for the highest version of themselves with self-respect and self-love.

Next week, I will share more about how I helped my teens get into a positive mindset using an idea I learnt at Journey To You.

A Million Beautiful Pieces January 2, 2019

What You Do Not See In Our Photo Taken On New Years Eve

I share this post with the deepest love for my children, their friends with special needs and the siblings of people with special needs.

It’s not often I write about the challenges that we face as a family with a child with special needs. I prefer not to discuss this so publicly. I know that it is not easy for people living outside of this perspective to fully grasp the love and heartache that co-exists for families like mine.

Yet today I will share this photograph of our fireplace and candles while we waited to usher the New Year in that holds within it more than it shows. It looks warm and cosy. That it was.

Not seen in this photograph was our daughter Savannah who is off camera to the left. She was using her noise cancelling earphones as she tightly crouched on a couch. Curled up in as much as she could make her body curl. Her face was buried in her hands. Her siblings, her dad and I were taking it in turns to hold her. Our neighbourhood erupted in fireworks and boomed their music as the rain poured down until four o’clock in the morning. Even with the noise cancelling earphones everything became too much for Savannah. She was in a panic attack and there was no way for us to stop any of the triggers.

As an autistic person, for Savannah (not all autistic people have the same reactions to the same issues) loud unexpected noises set her heart racing and she falls into a state of panic. She goes into full shutdown and struggles to focus. She needs calm and comfort which after twenty-two years of raising Savannah, we know how to be still and not allow our frustrations to take over. If at all that we even feel that anymore.

It would be easy to say that there are laws in place prohibiting the use of fireworks and that loud music is not allowed after a certain time. However if anything we have learned as a family of a child with special needs is how aggressively most of society feel entitled. It’s such an interesting perspective to parent Savannah. She is actually entitled to so much because of her disability such as a simple matter of being in front when watching a show as she is unable to look over someone’s shoulder. Yet, I still find myself asking people not to stand in front of her wheelchair at events like these.

Or for family and friends who become upset when we don’t visit them or don’t invite them over or can’t attend their event. It is baffling how we are easily cast aside for these reasons because people assume that my life is about them. Travelling with a person in a wheelchair means having enough space for three children in the back seat plus a wheelchair in the boot. We drive a sedan. We can likely carry one small bag which is usually Savannah’s bag of extras. Once that is loaded into the boot, there is nothing else we can pack in. So travelling too far is not an option and Savannah cannot sit upright in a car for too long. Hence we limit our travels to what is comfortable for the whole family. I will not even mention the costs of being a family with someone with special needs.

We invite people over who will not mind getting their own coffee or taking a turn to sit with Savannah if she needs company. I can’t have people over who require formal entertaining and also don’t know when to leave. I am sorry about that. It does not mean that I do not like them as people. In most cases I really do enjoy their company, but the manner in which they define entertaining is not one that will work for me. So in that case, we will likely meet somewhere for coffee for an hour or two.

I am trying to make a living. Now I do that by writing and it is not easy. In addition I work from home which has been my daughter Savannah’s domain as she spends the most time in the house than the rest of the family. It is not easy negotiating emotional and mental space with an adult autistic person who also has a physical disability. I spend much of my daily energy helping Savannah to navigate the world from her unique perspective which often I fall short to understand because I just do not experience life the same way that she does. I also take care of her physical needs like bathing and serving her meals to her. When she is in a meltdown state, she will not eat and then I will feed her.

The world is full of people who have a right to enjoy life because they worked for this right. I do not take anything away from that. Yet true living isn’t made up off what rights we exercise. It is made up of what rights we gave up so that someone who cannot survive in this world alone, may at the very least live a life without further challenges caused by those who have the understanding to know better. For this reason our December was epic. We celebrated the season with amazing people who know that being our friend will be different. Very different but still full of merriment. Ours is the home where there is always a party happening and people connecting while Savannah’s needs are respected. For my friends and family who make that happen, we love you.

So what happened to Savannah as New Year’s erupted around us? Well, the most painful truths are not lost on my other children. As we attempted to usher in the New Year in prayer, Talisa held her sister. When we were finished she played Savannah’s favourite Bollywood songs as loud as possible. Both her and Eli tried their best to distract Savannah with amusing antics. Talisa offered to stay up with Savannah so that Michael and I could go to bed. I thought I did not ask for this nor did Michael, nor did Talisa or Eli; yet here we are. A family who understand what is really important in life. Sitting in front of a fireplace with warmth that no fire could have provided. That was nothing to be sad about. It was something to be grateful for.

I thought about the hundreds of families I know, who at that same time were either holding down their loved ones as they agonised against the loud sounds or fought to break through doors in an attempt to find a safe space or created their own louder sounds to drown out the external noise or lay still after seizures racked their minds and bodies. I thought about the depths of love and heartache we live with and yet the next day our social media posts will only reflect one part of this story.

My posts will never show what challenges we face as Savannah’s family. She does not have seizures or big outbursts that may cause harm to other people. No, our daughter harms herself. In addition due to her physical disability, tension causes her muscles to go into spasm which means that for a day or two, she may not be able to leave her bed without significant help from us. We will never disclose anything that leaves our daughter exposed to a society that seem to know much about life, but so little about living it; so that is the most you will get from me.

I will not share the tough stuff in videos or photographs about our behind the scenes because Savannah cannot exercise her right to privacy and I am the custodian of that. Sharing emotive images will certainly launch my social media profile into a whole new level by telling the story of how disability breaks me wide open and leaves me reeling. That may very well be my right to speak my truth and share my pain. Yet, as I write this and watch my daughter sleep, I know that my rights are forfeit if it causes her harm. Even if she doesn’t know that harm is being done to her. She is unable to protect herself on the internet or tell her side of the story. While she may never know; as human beings our family will enforce every right and carry through every responsibility to protect her rights.

I know this is hard to read, but this is for all those families who are recovering from the New Year celebrations that they were not a part off in the traditional sense. For them and myself I ask this:

Do not speak to us about rights and what people are entitled too.
Do not boast about the one or two times a sacrifice was made to give someone who is vulnerable a better experience.

Simply do this instead:

Live with a consciousness of journeying through this world together. Even if you have to slow your pace to accommodate someone else.
Just as all parents do not want their children to be harmed; please remember that for some of us, our children are children forever. Parents of typically developing children are unlikely to be holding an adult while they are in a full-blown panic attack. So be kind when we leave an event or ask for the noise to be lowered.
Give someone the benefit of the doubt.
Travel light without all the hangups of who did not show up for you.
People need people. Not things.
Forgive and then forgive again. I get to practice this one often.

To all our co-families of children with special needs:
You Rock.

Here is my disclaimer: I asked Talisa to read this post before I published it and I asked her if it was too jarring. She said “Mum, anything we write or say about this will be jarring and people may find it harsh because they just do not get it. But it needs to be out there. In our family we have the space to talk about this but there are so many families who can’t. Publish it.”.

There are many support organisations for people with special needs. I have listed three here. You are welcome to add the links to more organisations in the comments below.

Autism; South Africa

South African Disability Alliance

Down Syndrome South Africa

My Inspiration November 27, 2018

My Inspiration: There is ALWAYS Time to Dance

Today Savannah is reminiscing about the wedding last year when I was the MC and I danced a special dance.

Now that I work from home, it is a mixed blessing.

My children and my husband love having me around and I find we are using our time more productively. I wake up everyday excited to meet the day. I can’t remember ever feeling like this in my whole life.

For those families who have a child with a disability, you will know why this dynamic is precious. My daughter Savannah is witty and funny and kind and thoughtful. She is also different in her way of thinking and feeling.
She is my ever-long learning course. Teaching me all that I don’t know and often after working hard at understanding her point of view, I come back to the realisation that I just can’t reach all the depths that her mind wanders too. As an autistic person, she sees life in a way that I work very hard to understand; only to find that I fail.

So often I fail. My struggle to keep up with the “normal” world collides with trying to grasp her view; and I become frustrated, and angry at myself. At her. At this life and it’s persistent demands. Yet, I have to live in both worlds. I have to try so hard to keep up with life so that I can be part of it’s rat race and try to earn a living to provide for all our children.

Governing all that we do, like so many families like us, is that we must try very hard to earn more than a living.
We must provide for Savannah long after we are gone. And that is what keeps me awake till the early hours or gets me out of bed long before the sun rises. Working from home while also being a caregiver, a companion and all that encompasses being Savannah’s mother, is my “more than a conqueror” daily challenge.

If I could stay at my desk all day, I would not eat or drink because truly writing feeds me like nothing else does. But my reverie is broken every time when Savannah calls me. Sometimes what she needs is reasonable and makes sense that she called me. Other times, she calls me to tell me something so far off base from the moment that we are in, that I throw my hands up in the air and proclaim out loud that I don’t need to know the tit bit of information that she is supplying. She doesn’t grasp that I can’t know what goes on on her head and so we tussle with memories until I either get what she is on about or I give up and walk away.

For example, a month ago she suddenly jolted to March 2014 and for several days, she recounted everything she remembered about that time. Everything. Details like what earrings I wore and who we saw. People who I have long forgotten. She remembered their earrings, their watches and who said what, when and where. As I fight back the urge to weep for what feels like the hundredth time that she calls me to say something that I cannot see the relevance in; I ask myself if anyone else lives in so many spaces all at once? And if so do they survive themselves?

Right now, I am in the middle of writing about Domestic Abuse for the UNWomen’s Campaign and it takes me back to times in my life that I have closed the door on. Yet, now at forty, the shock of what I was allowed to be privy too as a child, washes me afresh. I have several other writing projects underway and a new client who I have to do some research for. So my mind is a little more than preoccupied on a daily basis.

Then Savannah calls. Again. Not being sure if she needs physical assistance or if it is just another newsflash from the past; I walk to where she is because that’s my life.

Looking back over the years, I’m most in awe that while I was trying to glue my heart back together as a teenager who learnt too much about the hypocrisy of the adults around her, I somehow kept my sanity as I became Savannah’s mother. Over these twenty-two years I’ve listened to the same story that my heart didn’t have the words to utter when Savannah was little. Parents grappling with the heartbreak of the unknown as their child begins life in a world designed to set itself against them. The most competent of people, crumble as they understand the force that will be required to help their children live their best lives.

Each time, I’m stunned anew that a girl like me became Savannah’s mum. What was God thinking to trust me with her? It has never been easy. There are days when I wish I did not know of the things I have to know. But I survived and I have learnt how to thrive right where I am. Having Savannah at eighteen was probably the worst thing to happen in a life already falling to pieces. Yet years later I understood that being Savannah’s mother saved my life. Who knows what I would have become, had I not have to fight for her in all the ways imaginable and unimaginable? Would I have known how to fight for myself or for that matter would I have known that I could change the course of my life?

Even now as I try to juggle housekeeping, children, writing, keeping up with everything, Savannah calls. She is now remembering December 2017. She wants to play the song I performed at my cousins wedding. I’m not in the mood for this and I grumble something to that effect.

As I walk away from her with the clock ticking and the checklist running in my head of all that I have to get done today, I hear her say: “Pretty mum the wedding. My mum good dancer. Well done.”

Savannah and I decked out at a wedding last year.

I can’t help looking back at her as she gives me a big grin. Maybe I am wrong again. I don’t think I am looking after her at all. I think she is looking after me. Drawing me away from the square boxes everyone is fighting to fit themselves into.

If you have heard me speak you will know that one of my key points is that there aren’t answers to everything that life throws our way. For those moments, there is always dance.

And so as Savannah played the song “Tere Bina” from the Bollywood movie Guru for the umpteenth time this morning, I took my own advice; and I danced. She clapped and squealed and made her happy sounds.

No one ever tells us that the lines of our broken hearts, make for the most polished dance floors. Or that dance is meaningless unless someone gives you a beat to dance to.

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.