Tag

Autism

Browsing

What a surprise for Michael and I to read Talisa’s essay. Her teacher wrote”Look after Savannah – she is a blessing. Treasure what you guys have. I think with some polish you can be a great writer”.

I agree.

Here it is.. Talisa’s perspective.

Who is Savannah? You may ask. Well she is my almost twenty year old sister. No biggie,right. You are probably thinking just a twenty year old girl in varsity who goes out to parties and gets her hair done every week at the salon. Just like any other twenty year old. But she is different. Savannah is uniquely different.

Savannah is autistic and has cerebral palsy. Autism affects how she experiences the world. Her brain is just wired differently. Cerebral Palsy affects her body. It doesn’t function the way ours does. She also had an operation to correct her scoliosis. She had rods put into her back to keep her up straight. The good news is that her back is straight. The bad news is that she lost her ability to walk and now uses a wheelchair.

That was honestly the hardest time for me. I couldn’t grasp the idea that one minute Savannah and I were playing Hide-and-Seek, and the next minute she couldn’t even get from the bedroom to the bathroom on her own.

During that time we lived in a tiny townhouse in a complex. Our unit was upstairs, so my parents carried Savannah up and down those stairs for four years. Eli , my brother was a baby then, so they also had to carry him up and down those stairs. Savannah and I shared a room since I was two years old. When she had the operation I was six years old and my parents tried to get me to sleep in another room. But I didn’t want to be away from her.

Even though the house was small, I have the best memories of that time. Savannah and I used to dance together all the time (before the operation), and we played “teacher-teacher” or “doctor-doctor”. It did not worry me in the slightest way that Savannah was different from other sisters. In my eyes she was and is as perfect as can be.

In 2013, we moved to a bigger house. This house was like a palace compared to our tiny house. It has a pool, a front and back garden, a lapa and even a cottage for my Gran. My Gran’s cottage is way bigger than our old house.

We all have our own rooms. It was weird for me at the beginning; not having Savannah with me. Eventually I got used to it. But there are still times when I miss having her in the same room as me.

I am an animal lover and the best thing that happened to us, is that we have a dog now. His name is Jaime and sometimes he sleeps in my room, sometimes in Savannah’s room and sometimes in my parent’s room. This was the start of a new chapter for my family.

Savannah no longer attends school as she cannot cope with it. She used to attend the Johannesburg Hospital School for autistic learners, but after the operation, she was unable to physically and mentally cope. My parents tried respite care for Savannah to have a break from us and for my parents to have a break from caring. It’s not easy being a parent, but being a parent to a person with special needs is much tougher. We thought we all needed the break but it was not so.

It was too weird not having Savannah there with her music blaring out when I got home from school. I felt sad that she was not there to ask me a million questions about my day. Although these things can sometimes be annoying, that is what makes this family. We all felt lost and empty. I missed her. We all did. When she came back we couldn’t let her go again because our home was not the same without her.

She spends her week days at home and my mother has designed a program so that she is still learning. Everyone in our home helps Savannah to do something everyday. It can be baking, tracing letters and numbers or helping her to type e-mails to her old friends. She can’t read or write but uses a special picture program to type. On week-ends she does whatever we are doing as a family. Sometimes she has her own plans with her friends.

All Savannah’s quirks and strange ways, have made our family weird and unique. I would not want to change that! I will always continue Loving Savannah.

Join me on the 25th of March 2018 at the Johannesburg Zoo where I’ll be helping you to understand the power of communication for the autistic community.

“Our speaker is superwoman Desirae Pillay – mother to an autistic adult daughter, assistive technology advisor at Inclusive Solutions and AAC advocate. This talk will inspire you and change your perception of autism and communication.” – Jozi4Autism

Buy your tickets here.

I don’t believe in assuming what Savannah might be thinking, but just as I imagine what I’d like Talisa or Eli to think about me, sometimes I imagine what deeper conversations are denied to Savannah and I because of her disability.

“I know different” by Tricia Proefrock helps my imagination and lightens some of the burdens of my heart. May it do the same for those of you who walk the same path. And may it help you to be Different to us if you are not on this path.

I KNOW DIFFERENT
by Tricia Proefrock

Dear mommy,

I have felt your tears, falling on my face. Someone else might think they are tears of sadness, because of what I can’t do…I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible.
Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I’m perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures. Someone else might think you are ashamed of having a child like me…I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won’t look you in the eye, but stare at me, when they think you don’t see. I know different because I’ve seen the many, many more times you have raised your head up high, with pride, because I’m yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid…I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don’t need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me. I know your body hurts, because I’m getting so big. I know that more than anything, you want to hear me say your name. And I know you worry that you aren’t good enough, and that you will fail me…BUT I KNOW DIFFERENT MOMMY.

I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.

Desirae & Savannah

Our family had a great treat on Saturday when Savannah was able to attend a wedding with us. After attending so many functions as a family of four; it was awesome to finally attend something as a family five. What fun it was to get dressed. A very dear friend loaned Savannah a beautiful Punjabi (a traditional middle eastern garment) to wear. She spent days looking at it and feeling it so that she could become used to the texture and colours.

Savannah struggles with sensory processing difficulties, amongst other struggles. For many, many years we could not wear traditional clothing because the colours were too overwhelming for her. So overwhelming in fact that she would throw up after terrible bouts of gagging. This past weekend Savannah, Talisa, my mum and I wore traditional Indian clothing and I had a special time getting the girl’s hair and make-up done.

We took many photographs and created lovely memories that was special to share with my Facebook contacts on my personal page. Everyone enjoyed seeing us decked out and acknowledged how special it was that we have a photograph of us as a family of five. As I study the photo of my family looking back at me, there is something that I want you to know about families like us.

We are grateful when Savannah is acknowledged.

No, we do not want to be the centre of attention nor do we want her to be treated any differently. But her disability means that there are some things that she will never be able to participate in for varying reasons. Please don’t go off on the “positive thinking” thing. Some people are born really short and need a step-ladder to reach the top cupboards in their own homes (I know, I am this person), and all the positivity in the world doesn’t make them grow to reach the cupboard. So yes, same thing. Savannah’s disability means she just can’t do certain things. When she is acknowledged with kindness and compassion just for who she is; it builds up her self-esteem and makes the hard stuff a little more bearable for Michael and I.

Earlier this year at one of the weddings that Savannah briefly attended, the bride and her mum had a family member bring a bouquet of flowers to Savannah to hold. The bouquet was a smaller version of the brides’ bouquet. Savannah held it while she watched the bride walk down the aisle. With so many things for a bride and her mum to think off on such a big day, it was very touching that they thought of including Savannah in this way. Note: the bride never posted a single picture of this on any social media platform. It was just a special moment for her and Savannah and was not the brides’ opportunity to be “applauded for doing something nice for the disabled kid”.

At another wedding that Savannah could not attend because she was unwell; instead of throwing her bouquet, the bride gave it to me for Savannah. Yet again, at a different wedding, the bride also gave me her bouquet for Savannah paying tribute to Savannah in a moving speech. Then all the guests stood in prayer for Savannah. I wept.

At the wedding that we attended this past Saturday, the guests joined the bridal couple on stage for photographs. We would not have been able to get Savannah up on the stage and were contented to not have a photograph with the couple. But the bridal couple came down to where Savannah was seated and took a photo with her. That was very meaningful to Savannah that the bridal couple acknowledged her.

All these ladies displayed an unselfishness that is not seen too often today. To think of Savannah in these thoughtful ways when they have every right to be selfish is simply breathtaking. I recognise that we are incredibly blessed to have so many people of calibre in our lives. But too many of my friends with children with special needs do not have this support and insight from their own families and their places of worship. Some people even say it’s unfair that the child with the disability “steals” the attention on the day.

Families of children with special needs recognise that we are the “eye sore” of an event and we definitely do not want to “steal” the attention. Believe you me, it is no fun having people stare at your child or make patronising comments to you when they’ve had a couple of drinks and are suddenly less awkward to be near your child.  Or having to withstand the lovely ladies in their finery who stare condescendingly at you and at your child. No, thank you.  We do not want to “steal” the attention at all.

In society today, people without a disability wax lyrical about how hard everyday life is for them. A life they choose to live, built by their own hands. So it is astonishing that as a society we are not nearly as compassionate or caring to those who cannot live at the same pace that society sets. There is little point in buying a sticker or dressing up in costume to support a fundraiser for special needs; if when you have the opportunity to acknowledge the family in your midst with a person with special needs, you don’t do it. It is a testament to our humanity when we show that we care. It reminds families that there are good people in the world. It makes them brave and helps them to make beautiful memories with their children. The consequences of these actions have a far deeper impact than wearing a sticker ever will.

People with special needs and their families did not choose to be in need of support and care but we are. Our children did not choose to be dependent on their families forever but they are.  We want to rejoice and celebrate in the happy events of our families and our friends. When we make what is sometimes a mammoth effort to show up and to keep our bleeding hearts in check to celebrate someone else’s happiness; please simply acknowledge it; quietly and gently. You may forget the moment soon after the event has passed but we will remember it forever.

#acknowledge

(Published with permission of Talisa Pillay)

Honey-girl,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy birthday my honey. I love you!

Mum

Most recently I changed careers to work as a trainer, a public speaker and a freelance writer. It is my great love to teach. To use the mediums of speaking and writing to do that is a wonderful opportunity.

In my professional career my great passion was teaching and training. As a facilitator for training sessions, I know that it is vital to ensure that everyone understands the content, they feel confident to engage in the session and that they find value in the time that is spent in training. It gives me great satisfaction when trainees feel confident at the end of a session.

As a speaker, I am passionate about helping people to live their best lives. Using the experiences that shaped my life from being a teenage single mother in post apartheid South Africa to building a family and a career and now to facing the future with an adult child who will require full care, has taught me so much about what influences our decision making especially when one has to choose from a set of bad options. As a motivational speaker my goal is to share stories that remind people about the preciousness of each moment and that life is still beautiful.

As a writer, last year I entered the blogging space to contribute to social change in my own small way. I have learnt a little something about human behaviour because of the unusual circumstances that my life path has followed. Writing and sharing my insights is a way to give a little Faith, Hope and Love to the world. For my journey as a writer, I have also embarked on content writing for businesses which is an interesting avenue and one that creates diversity in my ability as a writer.

If you would like to engage with me in any of these capacities please complete the form below:

    error: All content on this website it protected. Please contact me should you need access to my content.