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October 6th is World Cerebral Palsy Day. In honour of this day, I had to share this and am doing so with Savannah’s permission. It’s my proudest parenting moment and I need to shout it to other families who think their children don’t understand or assume they will never learn. 

Savannah was changing into her swimming costume and when she gets to a certain point, she calls me to help her to finish dressing. So she called and I went to find her not dressed but distraught. Her costume was entangled in the pedal of the wheelchair, and both were lying on her lap. In her efforts to free the costume, she had yanked it off with the pedal. 

She turned to me, still distraught and said this: “Me stupid. I say bad word. I’m sorry mum.” I ask her, who did you say was stupid so I could get clarity of her meaning, and not make my own assumptions. She replies: “Myself. I’m sorry mum. No say bad words about me.” 

Savannah thought she broke the wheelchair and called herself “stupid”. Then apologised to me and herself. She was apologising because ever since Savannah was very little before I even knew she understood me, I repeatedly told her:

  • No one is allowed to hit her, 
  • No one is allowed to be rude to her (with details), 
  • No one is allowed to enter her bedroom or the bathroom without both my and her permission, and lastly 
  • No one is allowed to call her bad words. Yes, I taught her what those words were to the best of my knowledge. 

Now, here before me was this very same child of mine. As a twenty-six-year-old ‘autistic person with cerebral palsy and other stuff’ as she likes to be defined, apologising that she had used a “bad word” about herself. I was so surprised and happy that I actually did a little dance jig. Of course, I then affirmed that yes we all have things we can’t do and that Savannah is correct that it doesn’t make her stupid. I told her in my best Cat in the Hat impersonation which is something she loves me to do: “Savannah you are the truest of true humans I know. And I’m a prouder than proud of all the mamas because we glow.” Then we both laughed. 

If you’ve heard me speak about disability and acceptance, you’ve heard me talk about presuming competency. You’ve also heard me asking my audiences,” Are you prepared for the day our children tell their stories?” What will they say about how we treated them and what we taught them? 

This story of Savannah’s self-talking demonstrates too how so many of us think the worst of ourselves – we often don’t need to be taught that. We set unrealistic expectations and then beat ourselves up when we can’t achieve those expectations. 

I hope like Savannah we also apologise to ourselves when we say or think “bad words” of ourselves, and then ask someone to help us. Teaching children that we all deserve dignity and respect is so important, but modelling that in everyday life is how we do it. 

Also here is my truth –

I have used ‘bad words’ on myself “Darn, that was so ‘bad word’ of me, ” as well as on others, “How could she/he/you be so ‘bad word?” BUT, I’ve tried to apologise especially when my children were in the room because I wanted to set a good example, though I’ve never apologised to myself. Thanks to Savannah, now I know better and will apologise to myself too!

My husband Michael returned to the hospital this morning for another “small” procedure (he has long covid complications). I wish that I was not a frequent-hospital-patient’s-plus-one. Yet, when all is said and done, I’d rather it be me standing next to the bedside of my family, than anyone else. This procedure was meant to only be a day procedure. However, from experience, it was best to err on the side of caution, therefore Michael is staying overnight.

This time of year, from spring until January next year, is what I refer to as our Maverick. Maverick is the giant wave professional surfers chase off Pillar Point Harbour, Northern California. It is known to be one of the most dangerous and treacherous waves, and those who ride the Maverick are hailed as Titans. For me, this season from now until January is my race to be a Titan! This is a look inside what being a caregiver is like for me.

Why is this season more challenging?

Savannah is more anxious during this time. She experiences the change of the season into Spring in ways which makes her physically uncomfortable. To cope, Savannah self-injures. She has improved so much in this, but it is still a coping strategy that she defaults to. Savannah is not even aware that she hurts herself. It is not severe and nothing that Dettol and keeping the skin clean won’t heal, as well as strategies to redirect her and to increase her awareness of what she is doing. Still, just seeing her abrasions, and feeling like I am not doing enough, takes something out of me that is mentally and emotionally exhausting.

Three years ago, an occupational therapist worked with Savannah towards her overall wellness. We have maintained and seen an increase in her wellness since then. Savannah never slept through the night before that, and her longest length of sleeplessness was about three weeks straight. Since her time with the occupational therapist, Savannah only wakes up some nights. That is a huge blessing. However, during this Maverick season, she tends to call out more often while asleep.

Then there are the celebrations like Diwali, Guy Fawkes, and New Year’s Eve when sometimes there are fireworks. In the last few years, Savannah copes much better on these actual days but in the weeks and months prior, she is fixated on what sounds will be heard. She talks about it relentlessly.

Added to this year’s Maverick season, is the uncertainty with Michael’s health and the challenges we’ve had with our car. Savannah takes both issues very personally. She is looking forward to some events over the next weeks and months with friends and family but now that her brain is in anxiety mode mixed with excitement, she needs much more support to cope.

Roll back to this present moment, and Michael’s procedure.

Savannah is very sweet and wants to be near him to pray for him. When she hears Michael having an asthma-related issue, her anxiety deepens. Hence, this was partly the reason for him to stay in the hospital overnight to fully recover and maybe lessen Savannah’s worries.

This is our reality. It doesn’t phase me as much as it is exhausting for me. Still, I cope. I learnt to breathe deeply and get the next task or job done while redirecting Savannah or talking her through it. When I watch surfers barrel a Maverick, I feel like that is an analogy that resonates with how I feel. Like a surfer in a tube of a wave, trying with all her strength to keep her balance to ride out the Maverick without falling.

I also know that no one is coming to save me from this. People will help. They will offer advice, a meal, a shoulder but every morning it remains up to me to get up out of bed, face the day and be brave enough to go again down the rabbit holes of my daughters’ mind and my husband’s health.

How do I cope?

I acknowledge that this is a tough role to sustain. Instead of having a fixed plan to cope, I have several options that I can interject into my day without it feeling like another stretch for my mind and my heart. My activity of preference is walking. When I can’t make the time to do that, I listen to a favourite playlist or a podcast, talk with people who I enjoy being with, or I write. And I love trees. Seriously, love trees. I photograph trees wherever I am.

I also lean into my faith where I trust that God cares for me too. Sometimes I cast my worries on Him, other times I am loud or silently weeping to a friend. At times, I am questioning, and other times I dance joyfully. Always I am not holding these highs and lows hidden inside me. I have a fulfilling life outside of caring for my family too because I need to be in the spaces of my ministry and work to remain soft.

Often family caregivers tell me that it is easier said than done. To have any life outside of being a caregiver. This is true.

So, say it, and keep saying it. Over and over. Until your ears carry it to your heart and mind. Until someone else can hold you, listen to you and help you. Until you know you have your soft space inside of you.

You matter too. Your joy, your dreams, your experiences, your challenges..it all matters. To help make it easier for you to go from saying it to doing it, tell me in the comments one activity, routine, or indulgence that you miss doing, and how you think you can start at it again.

Information about Savannah is shared with her permission.

I wrote the first part of this piece eight years ago and shared it a few times since then on other platforms. This is the second part to that piece.

As a writer who shares my own experiences about my struggles with childhood trauma, sexual abuse, being a teenage parent and parenting a child with a disability; it’s special when people write to me to express their gratitude. I don’t take for granted that it is a God-given talent to put words to some unspeakable hurts and experiences. It is Grace that keeps filling my life with Faith, Hope and Love.

Then there are those who are embarrassed that now they know what they would rather not know, and try to make me feel bad for writing it. I can’t help you besides suggesting that you stop reading my work.

I am almost forty-four years old. Of that time I’ve been a mother for twenty-five years to a child with a disability, and two more children while painstakingly trying to piece back what was destroyed in my childhood and in my early adulthood.

That’s twenty-five years of facing social systems where it has been inconvenient to include our daughter with a disability. Twenty-five years of reading cues in social gatherings of whether we are wanted or not. Or how long before they push us aside when they realise that Savannah is a 24/7/365 commitment for us?

Twenty-five years of giving people the benefit of the doubt, only to have Savannah made fun of dismissed by those who were entrusted to care for her. Twenty-five years of having to deal with mothers who let me know how grateful they are that their children aren’t like Savannah. There’s that pat to Savannah’s head and pronouncement that ‘They are such a blessing.’ I keep thinking to reply ‘I hope God blesses you as much as He has blessed me.’ But my fear of extending the unwanted encounter holds me back.

Twenty-five years of still having days when I go to bed weeping, frustrated or lying awake at night wondering what will happen when Michael and I are no longer here.

So why do I keep writing about the hard stuff?

Simply because I am still inspired by my children to leave behind encouragement and evidence for them to know how hard we tried. I write so that my children will know I tried to change hearts and minds, and that being kind is still worth it. In my first edition of this post, I wrote that gaining acceptance within society was the reason I wrote. Now, in the aftermath of the Esidimeni tragedy, and the continued lack of services and support our community faces, I also write to remind other families that we are not alone.

While we bear up against it all, we can be united and be a source of comfort, hope and information.

Like the way, my children comfort each other when they are made uncomfortable because their sister is different. It’s a sad day or a glorious one (whichever way you choose to look at it) when your children can explain the love of God in spite of the callousness of other people.

Sometimes callousness takes the form of being given unsolicited advice. Other times it’s to point out to us, in Savannah’s presence, that God can do amazing things and He will make Savannah whole. I cry every time we hear that because of the severe lack of insight that statement contains. The testimony of God’s sufficiency to my family does not need to be proven by Savannah being made into anything other. His sufficiency is proven in our diligent commitment to her care and well being, even on days when we are overwrought by her complex and beautiful mind, and that we do it again and again. His sufficiency is when Savannah comforts us, and when she laughs and loves freely and without restraint. That’s a testimony of faith and sufficiency.

After twenty-five years of this, I’ve learnt that many people need Savannah to be fit into their limited understanding of God’s goodness for THEIR faith to be affirmed. It feels like they see Savannah as broken and someone who should be “fixed” to match their idea of a whole person so that they can feel affirmed that God is good.

From left to right: Talisa, Eli and Savannah

But in our home, we know a secret. Savannah is a remarkable beauty; fearfully and wonderfully made like her siblings. While the world is designed to forsake us, judge us, dismiss us, persecute us, and remind us how we can’t fit in with their carefully organised systems; we know a God who understands that in our fatigue, it’s hard to grasp theology but easy to hold onto Kindness. A God to whom my children speak to like this:

‘Thank you, God, for the patience you give us. Now please can you give the same to the parents who are racing in school traffic when we are all going to the same place at the same time.’

Or‘Lord, thank you for Savannah. I realised today that she does an amazing thing. She can still choose people who won’t choose her’.

Or Savannah’s prayer, ‘Lord, Thank you my life. Please help lady with walker at church. I feel sorry for her. My dad is sick. I am stressed about him. Look after my sister, my brother. Help my mum. Amen.’

Savannah and I

When ignorance pierces my armour; I hold the broken pieces of my heart before God with my favourite poem about loving a child who is different:

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.

Father, forgive them for they do not know what they do. Luke 23:34

With all the Love that I’ve found in the Million Beautiful Pieces that make my story, Desirae

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.

A family holiday

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.

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.

Savannah and I with Kurt and Maggie

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.

In March this year I was chosen as the Most Inspirational Blogger in the SA Mommy Blogger Awards. It was my goal to pay tribute to the other category winners. This year has taken a somewhat winding path, and I did not complete that goal. I intend to do that whenever I can by sharing a post each week about the winning bloggers. They are each talented and delightful in their own way, and together these bloggers give us readers a wonderful view into lives and topics we would know nothing about.

Today’s featured blogger is Chevone Petersen of www.chevslife.com. I was excited to learn that Chevone and I have a few things in common: we both love writing, we are part of the autism community and we are passionate about parent empowerment.

Chevone’s winning blog posts were:

The Last Boy on the https://chevslife.com/2017/08/16/last-boy-train/ ;

and

She Got Her Wings https://chevslife.com/2017/01/12/she-got-her-wings/.

Get a coffee and doughnut then click on over to Chevone’s blog and have a look around. Her writing draws you in and makes you feel that you never want the story to end.

Chevone, thank you for Unmasking Your Journey to Optimism.

Happy Friday Everyone

Over the years my family and friends who were parents themselves; have at different times said to me that they don’t know how to explain to their children that Savannah is autistic. They did not have the understanding themselves nor the vocabulary to teach their children about Savannah’s unique way of playing and why she seemed so different to them.

So it was a great honour for me to meet someone like Michael Clark at the Jozi4Autism event a few weeks ago. He and his team at MAAN Creative Studio have created a lovely animated short film about a hedgehog who is raised amongst sheep. The movie aims to create acceptance of people who are autistic and it is intended to be available for free.

Please help me to help them meet their crowdfunding goal to get this movie made by following the link. Watch the short clip and then please back them through the crowd funding option. There are only EIGHT days left to raise the funds.

Sam the Hedgehog: Short Film for Autism Acceptance
Promoting understanding of autism, SAM tells the story of a hedgehog raised among sheep.
As many as 1 in 68 children born today are diagnosed with Autism Spectrum Disorder. As yet, nobody knows the exact cause. What we do know is that this growing community needs to be heard and seen. “Sam the Hedgehog” is a short film about a hedgehog raised among sheep. Told in verse, it shares the message that ASD individuals should be celebrated and accepted as they are. Once the film is made, it will be made viewable and shareable online, free of charge.

 

 

Here’s their website:

 

Follow them on social media:
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Support their campaign:

 

 

While the world dedicates April to Autism Awareness in our house everyday is Autism Awareness and Autism Acceptance.

That is the message we spread.

We are humbled to be featured on The Post newspaper today to share Savannah’s journey as an autistic person. It is with deep respect for the autistic journey that we hope other families will be inspired. Please note as a family our personal preference is not to use the term Autistic Spectrum Disorder but we prefer to say that Savannah is autistic. We only have so much control over what goes into print.

To Savannah. We hope that these strides make your personal journey more tolerable.

 

Read more here

To our daughter Savannah.

Today the world celebrates Autism Awareness Day.
We don’t need a day to celebrate you. As an autistic person you have taught us so much about Love and Respect.

You have challenged our way of thinking and being. You have taught us to let go of what is unnecessary in life and fight like crazy for what is worth living for. Family!

As the world celebrates Autism Awareness, we celebrate our journey with you. We are bound to each others fate in a way only few other parents in this world are bound to their children. Sometimes that’s hard for me, and I know it is hard for you too.

We’ve come so far though, and we’ve survived being judged, lonely, sad, other people’s ignorance and so many of life’s set backs.

We are braver than we knew we could be. We are more resilient. Mostly we are kinder, more gentle and much more appreciative of life because of the journey that you are on.

I hope we make you proud because you make us proud to be your family everyday. Your dad and I love you more than all the sand in the ocean and all the stars in the sky. It hurts when we find that sometimes it is not enough to protect you and ourselves from the harshness of the world we live in.

So let us hope as the World turns its attention to Autism, they will make real changes that truly impact your life in a way that is meaningful to you.

Wherever we go to from here, please remember this:

I Do Not Cry For Who You Are

by (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 gray.

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.

All our love

Mum and dad x

By Desirae and Michael Pillay (non autistic parents to Savannah Pillay, an autistic young adult)

I am a motivational speaker, an aspiring author and a blogger. I love, love to write but I had no idea that in my fortieth year, I would find the courage to take up my mantle as a full time inspirational speaker and writer. I did not begin my adult life planning to become an inspiration but God had his own plans for me.

I grew up in an unhappy home and by the age of eighteen I became a mother. Being a teen mother was painfully difficult but learning that my daughter, Savannah was diagnosed with cerebral palsy was even more so. It was a torrid period in my life. I was married and divorced by the time I turned twenty one years old. I mourned in silence the loss of my hopes and dreams for my daughter and for myself; as I slowly came to grips with the reality of her diagnosis.

Teenage pregnancies and sex outside marriage was frowned upon then just as much as it is now. It’s still astonishing to me that even now we don’t do enough to address the “why” young women look for love in all the wrong ways in the wrong people. My own self loathing and self doubt coupled with the taunts of those around me should have destroyed me. The assumptions that I would not be able to parent a child, and more so be capable to parent a child with a disability, chipped away at what little self-esteem there was left in me.

I have journeyed a long way from the 18-year-old who thought she always had to do what everyone else deemed right for her. I was forced to do what was right for Savannah first and in so doing I slowly learnt to let go of everyone else’s expectations of me. Being Savannah’s mother meant learning to fight for her in ways that took me to the ends of myself. I had to learn to parent her while I was still trying to figure out what being a whole person meant for myself.

This is an incredibly difficult thing to do, even for parents who planned their lives and had everything go according to that plan. It is a complicated struggle to figure out who you are as a parent when your child has a disability. Sometimes the battles are not just with other people. The toughest battles are often the battles that erupt within us. As a parent of a child with a disability, it was incredibly difficult to fight my own preconceptions and expectations of who I wanted my child to be. I am still learning all the time, as each new season unfolds how to accept the life that lies before me.

Savannah has become an inspiration to many people from many different communities, but non more so than to me. She is also autistic and struggles with complications from her physical disability. She is the reason that my husband Michael and I met and fell in love. We have two more children: a daughter Talisa (16) and a son Eli (10). Savannah’s life continues to test my faith in God, in myself and in people and over and over again I find that Faith, Hope and Love remain.

I started out as a parent at eighteen and went on to carve out a most unique career that is diverse as it is fulfilling. From talking publicly about raising my family in the face of disability, to working as an assistive technology advisor, to being a motivational speaker, to using my skill as a speaker to host events and to conduct trainings in various sectors; I found so many beautiful pieces in these experiences that make up this life I live today.

I was chosen as a South African to Watch by #SA Bloggers for 2018 and I was awarded the Most Inspirational Blogger by the #SAMommyBloggerAwards.

My family lived through more heartaches and struggles than my 18-year-old self could have imagined she would survive. And yet I did.

I learnt that life is frail and must be handled with care.

I learnt that there are heartaches that will never be healed, but living with a broken heart doesn’t mean you are broken.

I learnt that people need people, but not everyone wants to be the person who is needed.

I learnt that unconditional love is real and a rarity, and I am blessed to know it.

I learnt to trust the process.

I learnt that people are always more important than things, always.

I learnt that God does not give his strongest fights to his strongest warriors. He helps normal, everyday people to face their difficulties and He never leaves them.

I learnt that…… my true self…… is made up of A Million Beautiful Pieces.

To book me for an event please click here:

This Is What I Do

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