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A Million Beautiful Pieces February 15, 2018

The Ones Left Behind by Sue Robins

As a woman raising women and being married to a husband who believes I can do anything; our family are always aware of the gender inequality in society.

Then I am aware of the inequality in how people with disabilities are treated.

When you mix all that together, I am living the truth of the inequality against mothers like me. Women who are expected to be Super Woman in all areas of our lives while maintaining an income.

Currently I am struggling to find the right care for Savannah while I maintain a job. I have to work so we can provide everything our family needs. The notion of giving it all up and staying at home to take care of her full time sounds so heroic to many people but it is also folly for many families like us. Medicine and therapy costs us quite a lot of our income every month. We pay above medical aid rates for doctors and medical aid doesn’t cover everything that Savannah needs. Now that she is over twenty one years old, we are charged more by our medical aid company.

Please note that we live in South Africa and our government only provides a minimum social grant for people with disabilities that in our case will only cover the cost of one of Savannah’s medicines. We do not have suitable social programmes to assist families like ours in our country and when they do exist; corruption is rife.

So long story short… I have to work. And while my employers are the exception who are flexible and accommodating, being a mother to a child with a disability means I can’t plan for a career because I don’t know what bend Savannah’s life will take. I am mom… I have to be there for all of those bends.

If you believe in equality and in raising the stature of women in society, then please read this article by Sue Robins and add mothers like us to your cause.

We cannot only take care off a few demographics of women in society and leave the rest behind. A woman’s fight is every WOMEN’s fight.

We are the mothers who feminism – and the world – has left behind.

Features February 14, 2018

Jozi4Autism Main Speaker

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.

My Story February 12, 2018

Where is that darn Cupid?

Here we are two days before Valentine’s Day 2018. The invites for our Valentine’s Day party (to take place on Saturday) have been sent. The party games have been arranged. The list of to do’s is growing smaller. (Just remembered I didn’t add *Get Eli’s gift to the list*. Must do that. List growing longer.)

Oh, and before you get comfortable please get a cuppa of your favourite something because I think this post is a little longer than usual.

So Michael and I have never been big on Valentine’s Day as a couple but we’ve indulged our children, especially as it’s been a big fundraising event in their schools over the years.

For the past couple years, we’ve made a big deal of calendar celebrations for Savannah’s sake. She misses the excitement of how schools make days like Valentine’s Day fun. Since she is no longer part of school or any organisation that would be suitable to her needs, we have tried to recreate the events she most enjoyed.

Our close family and friends are quite something and attend Savannah’s parties with their great energy and love. Savannah has a splendid time and replays those moments in her mind or by looking at photos of the special day for months thereafter. It is these parties that compensate somewhat for all that makes her sad.

What makes Savannah sad? The same things that make any young lady sad. Savannah has given me permission to share this story with you told from my perspective and not on her behalf:

Two years ago, out of the blue after a therapy session, she asked her then carer “Why no boyfriend for me?” My mum who was with them at the time, assumed I had discussed having a boyfriend with Savannah. She told Savannah it’s a good idea to discuss it with mum and dad.

I hadn’t had a conversation about a boyfriend with Savannah so when my mum told me, I had no idea where that was coming from. It was hard to hear when my mum also said that Savannah was just unusually quiet that afternoon.

The same evening as Michael and I cleared up the dinner table, we chatted with Savannah about her question. What ensued was one of the greatest heartbreaks I’ve ever known.

Savannah repeated her question “Why no boys like me?” Michael said because most boys, lots of boys aren’t nice enough. He told her that we don’t know why boys were so silly but that she was always going to be our wonderful, beautiful, special lady and we loved her so much. He told her that Eli and her uncle Darren and he would always protect her and make her happy. She said flatly “No boy look at me dad.” I think Michael’s heart broke in an unrepairable way that night.

I tried to make light of it. I reminded Savannah of some of our friends and relatives who are single and happy. I then told her that when you have a boyfriend and eventually a husband, you have to do crazy stuff for them like their laundry. And that’s gross. I heard myself giggle and say I don’t want her to have to do stuff like that. And that guys are more trouble than she thinks.

I sounded calm and light hearted. So I thought. But I was trying to fight back tears. Later I thought off all the things that might have been better to say, but when you feel like the blood is draining out of you and recognise the angry screams you are trying to block out are your own silent screams, nothing I said would have made her feel differently or would have made me handle that evening any better.

Savannah wheeled herself to her room, still quite down. A few moments later we heard her play our wedding song “Paint my love” by Michael Learns To Rock. Michael and I were stunned. She never played that song before. Then we heard sobs.

I’m very brave when my children need me but that night I couldn’t see her like that. I went to my room as Michael knocked on her door and she told him he could come in. He sat with her for a while while she cried. Then she said “Can’t help me dad. My heart broken. Me be alone now.”

Michael helped her into bed then with a deep sigh, he came to bed. We both just lay awake unable to say anything that would make sense of the evening. Wrapped in all those diagnosis, was still a young woman who just wanted to be like every woman:in love and happy. Where was that darn Cupid and is there an arrow aimed at someone for Savannah?

But the world’s definition of beauty and love doesn’t look like our daughter Savannah. It does not help Savannah that any opportunity to make friends independently of Michael and I is also very difficult to organise.

Savannah can’t attend any adult community day facility because nothing is within reasonable driving distance. Mainstream community groups like youth groups aren’t an option because it would mean that Michael or I have to attend because people generally don’t have the time to invest in getting to know her.

Her being in a wheelchair, having difficulty in making herself understood to unfamiliar people and being autistic is just beyond the abilities of most people to comprehend. Rapunzel’s Tower, Sleeping Beauty’s curse and Cinderella’s wicked step-mother would have been far easier for us to deal with than society today.

For our daughter no Fairy Godmother or Knight in shining army will be arriving to make her the Belle of the ball. People aren’t teaching their children that it really isn’t an imposition to spend a little time with her.

Moreover if they did, I’d be afraid because we’ve already been subject to other parents mimicking her speech in jest or repeating her phrases thinking it would be funny to Savannah too. Not funny. Not at all.

So here we are. We celebrate the things that make her happy. We accept what is true for her and what is true about the world we live in. We don’t like it but we make what is in our control… SPECTACULAR for her.

Valentines Day is going to be awesome for Savannah. Later today she and I are going to get her new red clothing for the party and an Alice band. This year she wants an Alice band. She has already made a special gift for her sister and then she’ll work on her brother’s gift….because that’s LOVE. She knows that better than most.

“Love is patient, love is kind. Love always protects, always trusts, always hopes, always perseveres. Love never fails.”
Excerpts from 1 Corinthians 13.

My Story January 24, 2018

I Know Different by Tricia Proefrock

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.

My Story December 12, 2017

Peace be upon you

I matriculated from a Catholic School where mass always ended with Father Dryden’s greetings “Peace be upon you”, to which we replied “and also with you”.

Over these last few weeks that greeting resurfaced in my memory. In the middle of a storm in my heart that greeting became a rainbow. A promise of something I thought I would never know: Peace

As an ordinary Christian for the last 17 years I read many times about the Peace that Christ left for us. But I never understood it because in the reality of my life, Peace seemed like a fairytale.

This year has taught me so much about people, about love, about acceptance, about family, about my roots and about God.

I have spent too many years of my adult life trying to emulate the women around me especially the leading ladies in churches and the ladies in my social circle. I was never as miserable as those times in my life.

I felt more lonely, confused and wretched when trying to fit into their ideas of being a woman. As a parent to a child with special needs with a constantly changing diagnosis, I was always on the outside of their circle anyway and it took a mammoth effort on my part to just engage with other mothers.

Every now and then I’d be brought in from the outside of the circle for a hug and a measured out pouring of love which I gratefully accepted as my portion. Every now and then a head bowed in my direction in recognition of my potential. But when I asked for what I really needed or bared my very sad soul, their inability to handle my truth taught me then that as a woman, wife and mother, I was on my own.

This year, for the first time ever I found strength in that. Mentors are great when equality and respect flow both ways, but sometimes, for some, the only mentor good enough for the job, is God himself.

Now I’m no great theologian or scholar of the Bible but I’ve understood profoundly and soul deep that my life has been moulded by a master craftsman. I’ve survived too much heartache and have overcome unbelievable challenges for me to believe anything less.

This year was our greatest challenge as a family but we attended five weddings, three bridal showers, gave four parties and showed up for my extended family and friends whenever we could. I served on a board for an NGO while also being employed in a job where I witness deep heartaches and sweet miracles daily.

All this sometimes on too little sleep or no sleep; sometimes with a couple hundred invisible band aids on my fragmented soul I showed up and gave my very best every time.

As I recalled Father Dryden’s greeting, I realised I learnt a great truth this year. I finally knew what Peace felt like.

It is to accept the path before you, to look at it intently and to embrace it bravely.
It is to acknowledge that it will be frightening but not impossible.
It is to know that I don’t have to know everything and trusting that whatever comes, I am enough to handle it.
It is giving myself permission to walk away from what makes me miserable and to embrace what makes me strong.
It is finding myself again in dance. Allowing the music to move my body and help me turn bad energy into something beautiful.
It is to accept that some of us can’t be defined by anyone else’s interpretation of God’s plan. We are only defined by communion with Him and the courage to live our lives outside of the circle that others seek comfort in.

And even knowing this, sometimes in my loneliest moments courage fails me, and I wish for many things to be different. It is then I am stilled by this scripture “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
Joshua 1:9

As Christmas draws closer, I wish you the best gift of all: Peace. May it be with you and cling to you like a favourite sweater or a great lipstick. May it help you rest and when you need to, may it help you rise.

Peace be with you.

My Story October 9, 2017

The Anchor

For Savannah Diwali, Halloween and New Years are very stressful days. So stressful that she is anxious months before when Spring begins. To add to her anxiety at the beginning of this September her caregiver left us without notice. At the same time both Eli and I fell ill and needed to have small procedures in separate hospitals just days apart. It was a rough time but not the first rough time that we have experienced.

We handled it because that is what you do. For us, we no longer believe that once we get through a rough spot life will get easier. We recognise that there is no telling what lies before us and just because we get through a challenge is no guarantee that we will not face something like that again.

What is that you say?

“God does not give you more than you can endure and remember He only gives his toughest challenges to His toughest soldiers”.

Well that is debatable. The high divorce rates amongst families like ours and the number of mothers on anti-depressants say otherwise. I think however well-meaning those lines are, they also place a burden of heroism on families. If those lines were followed by actions of friendship and support, they may actually have some tangible meaning for many families because God did not create us to deliver great lines. He created us to care for one another in a manner of humility and not for an opportunity to brag on Facebook. Mmmmm… I loaded that last sentence.

So yes, all I hear when people say something about my apparent super natural strength is:

“No matter how painful this is, no matter how much your heart is breaking; you are not allowed to break. The mother who is stressed that her child (without a diagnosis) is having a tonsillectomy or grommets or any other typical childhood ailment can break. Well, because you know she doesn’t have your super natural strength. But you whose child is facing life or death, or another painful surgery or whose child is going on strong meds too get those terrible seizures under control, or who can’t use the toilet at twenty years old or is peg fed at thirty years old; oh no you can’t break. Remember you were chosen for this. You have that special portion of strength”.

Actually we don’t. It’s more like what people need to tell themselves to cope with the reality of our lives. It’s not always helpful. We are not the toughest soldiers and no, we cannot endure some things. For my family the smallest change in Savannah’s behaviour, physical well-being or mental state can mean something. Too often we have had to fight for medical services when to the clinician’s eye Savannah appeared fine. Yet we knew something was wrong with her. And too often what was treated as a minor concern by doctors; has actually become a life defining issue for Savannah’s health. This is also true for many other families like us.

Where some parents worry about their child through an infection and then ease back into a more carefree take-every-day-as-it-comes lifestyle; we watch every movement, listen to every moan and take note of change of patterns all the time. And where most typical families experience intense emotions at medical procedures or when their child needs more help in certain areas; families like ours accept that hypervigilance is a normal way of life all the time.

And you ask: “However can you live like that?” In fact a mother of a typically developing child once said to me “I would never do what you do. You have too much patience”. Uh, it’s your child. But yes, each of us in the family have the choice as to how we care for each other while caring for Savannah. It is a decision that we as parents make to ensure that we don’t just live, but that each of us thrives. Not the “heroic” thrive that society wants to see but the thrive that your soul recognises and responds too. And in so doing my family have learnt that we can be:

Caring: It’s not just about the person with special needs but about each person in the family too. When we understand the frailty of life; care and concern is a way of life for everyone.
Careful: We are careful to hold each one close and sometimes especially for Talisa and Eli, we let them go a little too. We are careful too see each other in every moment and not only see Savannah. Only we understand the same unspoken beautiful soul secrets and the heartaches that lie deep within.
Respectful: Life isn’t a movie production just for Savannah. We respect each person’s right to thrive in their own story within the family. But yes, we have to take extra care that Savannah makes it to each moment.
Forgiving: We choose to live in a state of forgiveness. We understand that each of us can’t always be happy at the same time. One of us might be processing too many issues simultaneously or one of us might be worrying about something he or she cannot articulate yet or one of us might just be overwhelmed with the enormity of living against the tide all the time. And so we might not be as present as we should be. And that is okay. We forgive, we understand and we move on.
Joyful: We choose to be joyful. Sometimes like when I was sick and couldn’t get out of bed, I didn’t feel joyful. It annoyed me that I needed care and that I was a dependent instead of a carer. But listening to Michael and the children fool around arrested my soul. He was surviving on very little sleep but he chose to still be fun and engaging with the children. Joy is a choice and it isn’t as flimsy or as fleeting as happiness.

It is an anchor.

My Story September 12, 2017

I’m rising on a point of order

Just when I decided to start writing, it seems as if my world has tilted and requires all my strength including my reserves to get it back on even keel. Suddenly I can’t find time to write as every ounce of me is consumed with just making everyday life run smoothly.

Yet insistently and persistently a couple of ideas are impatiently marinating in my head. Each insisting it should be written first. But NO. Right now I have to bring myself to a point of order:

a. Find a domestic worker/helper as soon as possible. The back story here is that our helper left us suddenly and without warning. I can only deduce that she wasn’t prepared to continue working with someone whose health goes more down than up. That someone being Savannah. So after two weeks of doing as much as I can to keep this home running, I need help! Did I just admit that? Will the sky darken over me? Will a storm erupt around me? Oh wow…I feel the sunlight. The most important people in my life, my inspiration; my husband and children need me alert and engaged. And yes, maybe I can be Wonder Woman (trumpet blares) work full-time; keep house; be the physiotherapist; be the good AAC communication partner; be mom to my special needs, medically complex twenty-one year old; be mom to an almost, not quite fifteen year old; while nursing my son through the longest infection he has had to date. But will I be nice? Will I remember who needs what meds? Will I shout more and talk less? What will they remember about these days? Mmmmmm….got to find that helper.

b. Take better care of my hubby. He hardly sleeps. He wakes all through the night to tend to Savannah and more recently Eli. He arranges his schedule to get me to and from the airport when I travel or to drop or collect children when my mum can’t get them from school. He is my co-conspirator, my best friend and basically the reason why I still appear to be a fairly nice, well-adjusted person. Without him, I can morph into Maleficent combined with a little Captain Barbosa. My darling husband would dispute all of this and say all sorts of kind, beautiful things. And he would say he doesn’t need anything else but me looking after me which brings me to point of order c;

c. Take care of me. So fellow parents of children with complex needs, there is that darn age-old conundrum: Take care of yourselves while checking all the tick boxes on the “absolute must be done” list for our special needs lives to thrive.

As families where someone has special needs we know the stats on divorce, family dysfunction, burn-out etc. People are always too ready to point out those issues which are largely unhelpful to know about.

Here in good old South Africa, and I’m sure many other parts of the world too; we have absolutely no help from the government. We cannot depend on public services for aid with in-home care for a person with special needs.

Nor do we receive any aid for domestic services. Either we do it all ourselves or we work hard to pay people to help us (knowing full well we must be ready at any given moment to step in when they let us down) or we must simply pick our battles: I’ll be a great mother and a mediocre physio coach or a fair communication partner or I’ll just be a good enough cook today…but whatever I’ll be; I’ll be it honestly.

For now that means I’m honestly enjoying snuggling with my son; picking through his delightful, crazy questions. While Savannah listens to the same song for the hundredth time this evening and we both know she will survive without a physio session tonight. The ironing will get done another time and the Whatsapp messages will be answered tomorrow.

Right now, I’m helping someone really important:ME.

My Services July 10, 2017

This Is What I Do

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:

Special Needs

I KNOW DIFFERENT by Tricia Proefrock

I KNOW DIFFERENT
by Tricia Proefrock