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I took a while to write this post. In fact four days before my fingers actually hit the keyboard because I wanted to think about this a little more.

My son, Eli, was nominated by his football club team mates as Player Of The Year. Oh man, I was so thrilled for him. I couldn’t be at the awards and when Michael told me about it, his voice was filled with excitement. It was a deeply meaningful acknowledgement for both Eli and Michael because they have worked very hard for four years to develop Eli to play at this level.

Goalkeeper
Eli at a district tournament

I did not immediately share this news on social media. Last week I was astounded by the excitement that was generated when I shared a post about Eli’s achievement on the Kumon programme.

It was lovely to see that Eli’s achievement in Kumon was so encouraging to so many people but it also made me step back and re-evaluate why the response was so good and what does it mean to me and to my audience. The thing about the internet is that it’s not just about me and what I am sharing. It’s also about my audience and how this information impacts them.

As Savannah’s mother, I understand a little something about being “unable to achieve”. I also know that her unusual achievements have little appreciation in the wider social context. When she began her schooling career at age three, my social group had no idea about how hard we worked with Savannah to achieve simple skills such as holding her own bottle. It took her over seven years to learn how to throw a ball. She still cannot catch a ball unless it is thrown from very close to her and then only if she is alerted that a ball will be thrown to her.

I knew what it felt like to have a child whose report card read “not achieved”.

Over the years, as a parent and professional in the disability sector, I’ve learnt so much about the hard work and effort that so many children and their families put in to achieve their goals. Therefore today as a writer and speaker it is important to me to be responsible in sharing good and not so good stories. It begins with asking myself “why” am I sharing a piece of news and “what” do I want to achieve.

The only reason I share anything is to be a testament to Faith, Hope and Love. Eli achieving anything is not just that he has some gifts, but also that he works really hard in other areas of our lives too. As a family with a person with special needs, and who have minimal help, there are a fair amount of chores that the children have to assist with.

Amongst Eli’s responsibilities are clearing the garden of the dogs’ mess, feeding the dogs every evening while Talisa feeds them every morning, taking the laundry off the clothes line, taking the garbage out, making a fire (when necessary) and cleaning the fireplace, helping in the kitchen either with food prep or cleaning up, cleaning his own room and helping to set and clean the table around mealtimes.

Aside of this, Eli is a sibling to Savannah who sometimes needs assistance in different ways such as sorting out her computers or phone when there is a technical issue. Eli or Michael help her with this. When we attend parties or shows, Savannah also likes to have any recorded media on her devices so someone has to transfer it to her devices. Eli or Talisa usually take on this task.

Savannah needs to stretch by playing ball and she needs someone to take her outside and to throw the ball at a pace that is suitable for her. Eli, our resident sportsman becomes Savannah’s coach and works out with her.

Or when she wants to go for a walk, and I’m the available adult to take her but I actually don’t want to have to talk or listen anymore that day, Eli usually offers to accompany us, and keeps Savannah engaged with his happy banter.

Taking Savannah for a walk

Michael usually helps Savannah to bed, gives her medicines and prays with her. She sleeps much better when he does the bed time routine. But when he is not home, the only person who fills those shoes for Savannah is Eli. What it feels like listening to him go through Savannah’s routine is hard for me to describe. As a mother it just grips my heart and makes me feel like I am glowing from inside. What it does for Eli and for Savannah as siblings, is something one can only understand when you view life from this side of the field.

We know so well that life is full of surprises and challenges. We do not know what hurdles are still to come as Eli goes from boy to man. For now in this season, he has marked his life with these achievements and so I share his news. At eleven years old, while still developing and learning like any other boy of his age, he is also responsible in ways that many children aren’t expected to be or don’t have to be.

That is a testament to having learnt at a young age, that faith can move mountains, that hope is a lifeline and that when you love, you gain more than you give.

That brings me to “what” I want to achieve when I share posts about achievements. I want to encourage you that children can achieve so much more than we think is possible; provided that they are operating within their own abilities and their passions. I know how important it is for children to have the space to work for a dream, and then to have the space to bask in it’s glow when their dream becomes reality.

So for me, I share these moments of our lives not only to encourage a wider audience, but to also encourage my children. The internet is one giant diary, keeping an online record of our lives. Long after I’m gone these posts will be the relics my children and their children will sift through to learn about their past.

For Eli and Talisa, I want my writing to be a reminder to them of the amazing and wonderful ways God was with them and with their sister. As siblings to someone who will need care for her whole life, I hope that Talisa and Eli will find encouragement and strength when they grapple with issues unique to them. I hope that as they reflect on these posts they will remember what hurdles our family were jumping and why their achievements for its time were remarkable.

My own dream as a parent is inspired by the beautiful game:
  • I hope like that like a striker, I will keep my eye on the ball ever ready to take the tackles, and make the strike to benefit our family.
  • I hope like a great defender, I will know when to move forward and when to move back; never undermining my children’s abilities in the game of life.
  • I hope, like a goalkeeper during a penalty shootout, I will have broad enough shoulders to keep my chin up to return to the box time and time again to make a stand for my team.
Eli for Easterns Local Football Association under 10 Goalkeeper 2018

 

  • Most of all I hope I remember that just like a football coach knows that the game must challenge and test his players in order for them to be better, life will do the same to my children.

They must enter their own Theatre of Dreams to face the ball, to make their move and to learn to accept consequence thereof, for glory or defeat.

My greater hope is that when my children face their challenges: it will always change them for the better.

"We strive for perfection and if we fail, we might just have to settle for excellence." -Sir Matt Busby

 

A few days ago I posted a quote about parents empowering their children.

It’s a tricky business being a parent. The intense roller coaster of emotions that we experience while knowing we are fully responsible for another human is safely the hardest journey to be on. It is also definitely the deepest, most beautiful bond we can ever experience.

And this entanglement of emotions can sometimes cause parents to be down right “crazy”. We have to know how much responsibility to give our children and when they are ready for different levels of responsibility. We have to teach them to be strong, brave, independent and maintain their sense of curiosity, while we are supposed to also protect them. Once you become a parent, the whole independence thing just seems way too overrated. I mean, it’s completely plausible that a child can be dependent on their parents for a while? Maybe until they are twenty-five or maybe even thirty?

There I go doing the crazy parent ramble. The one that makes children want to panic.

But have no fear my friends. I’ve never been the parent who wants to hold my children to me forever. I’ve always maintained that I am raising them to leave because I know that they will be fully capable of eventually building their own lives. Michael and I are fully committed to our vision that our children will be their own heroes. Even for Savannah,who is likely to never leave home, there are still some areas of independence that Michael and I expect from her.

Therefore it was a great delight to me when my mother and Talisa showed me the video (link below) of the speech Deepika Padukone gave when she received the FilmFare award for Best Actress two years ago.

Deepika Padukone is the darling of the Bollywood Film industry and has the world at her fingertips. She read a letter that her father Prakash Padukone, a Badminton legend for India wrote to her sister and her. It’s a wonderful example of how to give our children wings while keeping their hearts humble.

Enjoy watching this touching video of a parent child bond that is filled with love, trust and faith. Then let me know in the comments what your best advice is to your young adult children.

https://youtu.be/TuZRUMpnTkA

As I wrote in my previous post (5 September 2018) I made the choice to leave a full time job and to pursue a career as a writer and speaker http://amillionbeautifulpieces.co.za/2018/09/05/i-am-bravely-making-the-scary-choice/.

Making the transition from one career to another is quite daunting. Then to do something so different as working for myself and being based at home is another paradigm shift. To work from home where my adult daughter Savannah (autistic and has physical challenges) spends all her time, adds another dimension that requires planning and patience.

Before I made the choice to make this change I thought long and hard about this. Working from home means that I have to be unbelievably disciplined. Especially when as a mum, it is usually my job to make sure that everyone has everything they need all the time.

Part of the planning process meant that I had to decide what and who I had to do without. Meaning I would not be in a position to attend certain social events that would be beyond my new budget and it means that I had to forsake having a full time helper.

I am truly blessed to have a lovely lady who comes in one day a week to help me. I am in awe of her. She literally scrubs down everything and makes the effects of this one day very meaningful. However for a family of five there are many domestic chores that must be done consistently.

This was my first challenge: to have a plan of action on how I was going to get through the household chores and my work at the same time. I can’t function in chaos and am known to morph into Maleficent on a bad day when I feel out off control. Therein was the first challenge. How to control the external so that I could control the internal?

Challenge two is somewhat more complex. It requires that I must be emotionally wise and mentally strong. That makes me feel tired, even as I write it. Yes, challenge two is how to manage challenge one while I also have to be my daughter Savannah’s primary caregiver.

As an autistic person with physically complex needs and as someone who is struggling to come to terms with the reality of her life, Savannah largely lives within her own time zone. Some days she might wake up at seven o’ clock and the next day she might wake up at two o’clock. Sleep is a fluid thing for her. On a good night she will wake up twice. On a not so good night we may get four hours of sleep. Of course she recovers the lost sleep …in her own time. We don’t.

When she is wake she needs some physical help. She also tends to perseverate on certain topics and may ask me the same question a few dozen times or may tell me something a few dozen times. She has some medical issues for which neither her doctors or I have worked out as yet when to expect a flare up. Thus being flexible, patient and kind is the mountain I already knew I would have to climb all day and everyday from here on out.

That is not easy for me. I’d love to tell you that I follow some programme on how to maintain my peace but sadly I am still a work in progress. I am frustrated sometimes that I am limited by what I can do because my daughter has no options for her life. Oh, I’m sure that many people want to hear that it is fulfilling to look after one’s child when they are so vulnerable.

What is fulfilling about not being able to afford all the health care that your child needs? Or not being able to have care options for her that did not include and be limited to my aging mother. I’m human. Of course I want to be able to do something that is relaxing for myself more regularly (like not once a year). But yes, I’m a more than a little tense, when I have to leave Savannah specifically because she has been smacked and teased in the past by those who were trusted to care for her.

The perceived fulfillment of being a primary caregiver to your child in these circumstances is just a like fairytale…pretty story with scary undertones.

So here is what I did. I thought about what I can control and that addressed challenge number one. I can control how the house is cleaned and run. And the first step in that was to get rid of anything that we did not need. This resulted in several bags of clothing being donated to three families. We also gave away some pieces of furniture, toys and ornaments.

Basically anything that was just one more thing to clean but had no functional use had to go. I think I can write a whole series about decluttering……..and decluttering when you have a child that does not know how to cope with physical changes in their home. I won’t labour on this for now but I’ll share this story at another time.

As always my concern is that during these changes I want my husband and children to know that their experiences within this is important to me. Therefore underpinning my decision to work from home was several conversations with them about what it will be like to have me around all the time and what it will be like until I am earning a salary again.

Children can’t always think through all the layers that we adults can see. Sometimes as spouses we too don’t have the same view of our shared life. Therefore Michael and I had to talk through what working from home, and specifically working for one’s self in something as unusual as pursuing becoming a writer and being a paid motivational speaker, will mean for us.

We also extended this conversation in parts to our children. We had to talk through life without a helper and what that meant. It is always a struggle as a parent to know how much is too much for your child. I think in the area of being involved in chores it is especially difficult because in South African suburban households many families have full time domestic workers and many children do not have chores.

I also felt conflicted because Talisa and Eli help their sister with her needs everyday. How then does a parent know what is reasonable to expect from an almost sixteen year old and an all most eleven old with busy scholastic and sporting schedules?

Here is what I learnt:

  • Talisa and Eli do not count what they do for their sister as a chore. They were a little taken aback that I would see it that way. Talisa annoyingly reminded me for the umpteenth time that whatever they do for Savannah is what siblings do. Lesson learnt again for this mama bear: my guilt has no place where love lives.
  • The Super-mum title is not mine and I have to keep refusing that crown. As the weeks progressed everyone settled into having me around but they needed reminding that having me at home did not mean I was available to them as and when they wanted me. Hey, I’ve just clocked forty! I can’t do everything for everyone. So after more discussions I’ve negotiated a trade: a foot rub and cups of tea and coffee, and they can keep the Super-mum crown and all that goes with earning that title.
  • Tears are a part of my story. Sometimes I will cry for all that I can’t be. Sometimes I will cry because life is unfair. Sometimes I will cry because the endless cycle of the same emotional roller coaster is unbearable. But mostly I will cry because I love. I count myself extremely blessed to know that.

These are the tears that make up my crown. I wear that one without any fuss.

When Love is Not Enough

A few people have asked me which blog post won the SA Mommy Blogger Award for me?

It was “When Love is not Enough”, first posted on November 13, 2017. I am reposting it today, and I am also excited to announce that I will feature each of the category winners over the next few weeks. From travel to food to education to comedy to great stories about real people; watch this space for more beautiful people who share their talent through the platform of blogging.

 

When Love Is Not Enough

A few weeks ago I came across this infographic from the National Council of Persons With Disabilities which I shared on my private Facebook profile.

The stripping away of the rights of people with disabilities is a lived reality. Whether they experience one or two of the denials or all ten, or more; it is a human rights violation and it is EVERYONE’S job to put an end to it.

So I was pleasantly surprised when two old friends who read that post asked what they could do to make a difference in South Africa to children with disabilities. My answer was simple: listen to people with disabilities instead of deciding for this community what they need. People with disabilities can help us to understand better than anyone what will be the most helpful supports for them. A few days later I was sent information about a joint project by The Solomon Academy and Bishop Bavin School (Bedfordview, South Africa). The Bishop Bavin School Pilot Project aims to educate and accommodate six learners with physical disabilities from sub-optimal backgrounds into Grade six at the school this year.

The learner’s educational plan will be individually designed to accelerate their skill set by ensuring the learners have the necessary technology as well as individual tutoring and medical aid. This project believes that every child deserves the best chance of gaining entrance to university. Furthermore, they aim to increase that number to twelve in 2019.

Now that’s doing something to put the power back in the hands of these learners. This is presuming competence and having faith with works.

The Solomon Academy is also running the Wheelchair Basketball Training Centre Rollout project at the school. Learners will acquire the skills needed to play and compete but the project needs a building to house the court, accommodation for the learners at the school, equipment and more. The aim is to house 40 children in the school by 2020 who will be part of this project. For international funders, this is a great opportunity to get involved in uplifting South African learners from previously disadvantaged backgrounds as well as aiding in furthering the policy of Inclusive Education. A capital prospectus is available for review for this project on request.

If you are like my two friends who want to make a difference, a REAL difference; then please speak to your places of employment about contributing towards a bursary or bursaries for the learners. Companies will qualify for B-BBEE points in either the Skills Development category of the new B-BBEE Scorecard or in the Socio-Economic Development category of the Scorecard. There other financial benefits for individuals such as tax rebates in terms Section 18 A of the South African Income Tax Act. Simply put you can get money back from the tax man when you donate.

It’s a win-win situation both for the learners, the school and for corporate and private South Africa. If you can’t contribute financially, there are other opportunities that will enrich your life even more than what you will do for a learner at the school, such as joining the volunteer program.

To help a child to get an education is the greatest gift you can give; especially when that child due to disability might otherwise be denied access to an education. Let’s stop throwing a pity party when we meet a person with a disability, and let us genuinely help to change the course of a persons life.

Have a chat with Andy Fraser or Quentin Robinson of The Solomon Academy to find out how you can help either with the Basketball initiative or with the learnership programme.

Andy Fraser 083 326 2928 or email andy@solomonacademy.org.za

Or

Quentin Robinson 083 446 6411 or email quentin@solomonacademy.org.za

or Donate to

Bank: S A Bank of Athens
Account number: 3000 000 4682
Branch code: 410506
Account Name: Bishop Bavin School
Reference: Solomon Academy

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.

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