care Archives | A Million Beautiful Pieces

My Story March 21, 2018

The Best Carpool Karaoke Made Me Cry Too; But Not Why You Think

Have you seen the beautiful video celebrating children with Down Syndrome? If you haven’t please watch it. It’s an internet sensation and I applaud the creators of the videos. You can view the video at the end of the post.

When I first saw it, Michael and I were awake at three thirty on Monday morning with Savannah (our adult daughter with complex special needs) who couldn’t sleep. We found her in her wheelchair with her curtain completely drawn back, exposing her bedroom to the moonlight. She was looking outside and just crying. We helped her back into bed and comforted her as best as we could. While I waited for her to fall off to sleep, I was scrolling through my Facebook feed. That was when I first saw the video. The caption stung me because it contained the words “love, courage, commitment” attributed to the moms.

A couple of things were highlighted here especially as I lay awake with my twenty-one year old child. Firstly, all of the children featured were young children with Down Syndrome. Where were the adults with Down Syndrome and their aging parents? Adults with disabilities who are still playful or are still hugging a Barney stuffed toy may get the “cute” vote but people are generally uncomfortable when it comes to childlike adults. Yes, there are many,many people with disabilities who are independent and are adults in their own right. But there are also a large group of people with disabilities who will love Teletubbies forever, who will be thirty years old and still sit on their parents laps, who will obsess over a toy from a kiddies takeout meal that they received twenty years ago and who will happily bob around to long forgotten Disney movie songs. Theses families would have been doing this right along with their children for all those years. Even as they are both aging. LOVE,COURAGE and COMMITMENT looks like this too.

Secondly, it saddened me that the reality of the world we live in is that it is easier to share a video than work alongside families like us to keep us strong and committed for the long run. I recently met a mother who is seventy years old. Her fifty year old son is a person with a disability. He cannot live with her anymore so he is in a care home. She is still fighting. She is trying to get him a better wheelchair but his chair costs more than her medical aid company will pay. He sometimes goes to hospital and it’s a fight to get a suitable vehicle to transport him. At seventy she is still fighting. She talks to people, she yells at people, she writes letters, she tries to raise funds, she visits her son, she makes sure he is properly cared for and she hasn’t stopped for fifty years. That is what COMMITMENT looks like.

My best friend is a mother to an adult daughter with Down Syndrome. My friend has always been a single parent. Her daughter’s birth father decided he had a choice and chose to leave. Twenty six years later, my friend works two jobs so she can provide for her daughter. She has assisted care organisations when her daughter lived there and still volunteers her time to help organizations who aid children and women in need of support; believing that one day it will come back to her daughter. That is what COURAGE looks like.

I am never impressed by people who carelessly say “I love people with disabilities”. In strong families where being a person with a disability is valued and respected, LOVE is never in short supply. But physical and emotional energy is difficult to have for as long as you both live. If I had a ten rand for all the people who have said they love Savannah and how much she means to them; I would be super rich today. But their love wasn’t the kind that was about her and what was best for her.

When families love their children with disabilities we love no matter what happens or how we feel. We understand that the expression of our love may be one-sided. We love even when we are tired of doing the same thing over and over. We love when we are sad that we don’t have choices because we are bound to our child’s fate. We love when people who know nothing about our lives judge us. We love because we actually understand the meaning of LOVE. It is not a weakness to love but the greatest strength you can possess.

So next time when you share a video about families with disabilities that gives you goosebumps and moves you to tears; ask yourself this: If the people in the video were your neighbours or in your place of worship or were a relative would you help them and love them? Without the goosebumps and tears, could you give them your love, time and support? Even if it made you uncomfortable?

Do you see the people with disabilities in videos as people with feelings, dreams, emotions, fears and the capacity to love? When you write beautiful captions about their families or carers without acknowledging the people who the videos are about, you nullify their humanity. If you write anything about our community, commend both the people with disabilities and their families. You can’t decide which of us meets the criteria for accolades but you can influence the support and understanding the entire family receives. That is true awareness.

And to Love especially in our families who are living the special needs life, Love is simply this:

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails. 1 Corinthians 13:4-8 (NIV)

Thank you to the moms of Designer Genes Facebook group for definitely the Best Carpool Karaoke.

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.

My Story October 30, 2017

We are grateful when our child with special needs is acknowledged

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