families of people with special needs Archives | Page 2 of 2

A Million Beautiful Pieces September 26, 2018

I Feel You Maleficent

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.

A Million Beautiful Pieces August 9, 2018

Guest Post: I Can Only Imagine by Talisa Pillay

Today, as we celebrate Women’s Day in South Africa and my family celebrates our eldest daughter Savannah’s 22nd birthday, this guest post is a touching tribute to sisterhood, the value of relationships and love in its purest forms. It was a great reminder to me about simply accepting life for what it is. About living in the moment and to appreciate that my daughters are much braver than I could have hoped for.

Talisa my second daughter wrote an essay for a school assessment. Yesterday when she received her score she was thrilled and as soon as I arrived home from work, she asked me to read it. I was blown away. Not only by my daughter’s writing but by the depth of her content and her bravery to share an emotional and personal story.

For Women’s Day 2018, I honour my daughters by sharing their story as written by Talisa Pillay: I Can Only Imagine.

“My worst fear is to be trapped. To be stuck with no way of escaping. To know that no matter how many times I try to break down the walls, I just end up being pushed down again: like an unwanted toy, shoved into the darkness of a cupboard. When my voice becomes one with the stale air around me.

My sullen thoughts are suddenly interrupted by a strange sound. I frown, creating creases on my forehead, as I try to riddle out where exactly the sound is coming from. I stride over to my window to hear if the sound is coming from outside. As I gaze out onto the brown, lifeless grass; I realise that the strange sound is music. It is not coming from outside but from the room next door.

A wide grin stretches across my face like the sun’s bright rays on the earth. I close my eyes and let the jumble of music dance in my ears and sail through my memories. It starts off with Whitney Houston’s ” My love is your love”, jumps to “Shake it off” by Taylor Swift, slides to Michael Jackson’s “Smooth Criminal” and ends with a bang to “Desi Girl” a beloved Bollywood song.

I’m smiling now because not only do I know all the songs from the top of my head, but I also know who is playing the songs and why. Sometimes when words fail her, music is the only way of expressing her most inner, intimate feelings. Music is entwined with her soul. Marvelous isn’t she? My older sister Savannah, my Savannah. That’s who she is.

As I open my eyes back to reality, I turn to my ancient wooden desk and see my forgotten cup of tea begging to be drunk. I let my black leather chair engulf me as I sip my now iced tea. There is a bouquet of soft white, purple and pink flowers that I catch myself staring at as though I might spot an ant on the dainty petals.

Savannah picked them out for me. She’s honestly the most humble, thoughtful human on this wide wide planet. In all fairness she shouldn’t have to be. Do you know why? Because although she has a smile that will melt ice and a laugh that will drive away your misery and a brave, precious, enduring soul; she also has a body that works against her. Yes, she is a person with complex disabilities.

Please don’t pity her or shower with bland, meaningless “You are such an angel” or “You are a special girl” but pity us people who get so annoyed for not being able to understand her slurred speech when it’s not her fault. And through all of this she still loves unconditionally and gives when we don’t deserve it.

She is the real warrior in this upside down world. I don’t know how she does it and I guess I never will. As the last drop of tea knocks against my lips, all I know is that…..I can only imagine.”

Posted with the permission of Talisa Pillay and Savannah Pillay

Happy Women’s Day to WOMEN everywhere!

Features April 9, 2018

The Post Newspaper Feature – Families raising autistic kids, adults need support

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.

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.

Features March 5, 2018

A Day in the Life of a Mum to a Child with Special Needs

I’m honoured to be featured by The Non-Adventures of a Stay-at-Home Mum.

This is just a normal day for us and doesn’t take into account unexpected events or big new adventures like Mrs South Africa 2018.

The Past And The Present Met

It is already two weeks into the New Year and this is my first blog post for 2018. My hope for you is that wherever you are in life today, that this is the year you will know resounding Joy and have boundless Courage.

I learnt alot about that in 2017. I realised that I found my Courage a long time ago but it has taken all of my adult life to find Joy. This holiday season has truly been Joyful which is an amazing description for me to give. Usually I dread holiday season.

As a family with an adult daughter with complex special needs; relaxation and socialising has always been labour intensive which in my opinion, defeated the purpose and left me feeling confused and cross every, single holiday.

Yup, I understood the holiday blues very well.

This holiday season I enjoyed a pleasant, beautiful start to the year on a beach in a quiet seaside town with my husband and children as well as with our extended family. My daughter Savannah still has the same struggles and some additional struggles but what she doesn’t have anymore is a mother who feels overwhelmed and frustrated with life.

I’ve written in a previous blog about how long I battled suicidal thoughts. Even long after I stopped feeling that death was an option, I still felt a deep sadness: a melancholy in my soul, a wish to slip quietly into darkness. 2017 was the year that I understood that darkness and it’s hold over me.

It was the year that I accepted that no one can save me from the sadness but myself. 2017 was the year I became my own hero. I was marked by the frailty of life and touched by the gift of each new day as our family faced a new set off challenges with Savannah.

To that end, my husband surprised us by booking this holiday so that we could make memories with our children and still keep Savannah as comfortable as she needed to be.

Ironically, I was holidaying just a stone’s throw from the home that our matric class of 1995 stayed in for our Matric farewell tour. Being there; seeing the familiar train track we walked along twenty three years ago and the sandy road that leads to the Children’s Home were we stayed brought back memories. The past and the present met each other.

Before that tour I remember how us girls worried if we would be able to fit everything that we would need: like a hairdryer and clothing for every season and occasion! We worried about where we would sleep and if we had to share the bathrooms with each other. Oh horror of horrors for teen girls. It seemed so important back then.

I vaguely remember an evening with a beach bonfire, the dinner hall which I think had pink and peach chintz curtains, an illegal alcohol related gathering and walking along the train track to the mini shopping centre during the day.

I remember how often on that tour and for the rest of the year I felt that I didn’t belong amongst those amazing people. I had nothing to offer this group of confident and friendly fellow students. I deeply admired the few I had formed close relationships with; and wished I could be more to them.

I admired the sets of friends as much as I admired the individuals who made up the sets. But when you see yourself as worthless, you can’t comprehend that you have value.

Throughout the two years that I was at the school I was battling a deep depression. I felt like an empty shell. I felt old and sad. Yet to everyone around me, I was the dependable, responsible, happy girl.

My first suicide attempt was in the November of 1995; the night before my final Afrikaans matric exam. I was found in time to be taken to a hospital; my stomach was pumped and drained and I was made to write the exam. I was dazed and tired but write it I did.

My attempt to end my life was glossed over by my family and I was left feeling guilty for putting them through that. By the next August I had become a mother and a wife, and the sadness intensified with the shame and pressure from my social circle.

Two years later I was a single parent to a child with a disability, a divorcee and working to make ends meet for my daughter and myself. I only faced each day because I was responsible for my daughter. Nothing else. I felt trapped in this world.

This week I heard of the death of a well respected professional in the disability community, and the Facebook announcement of her death had this quote “People do not die from suicide, they die from sadness.” So true.

I remember friends who have left this world by their own hands and how often I have waltzed with suicide and I angrily question that in a time when we know more than we have ever known about emotional well being, mental health and psychology and the importance of support structures…why, oh why do we not see the sadness? What are we missing that it is still so difficult for people to find help and understanding?

It seems that all that’s happening is that we are becoming a generation with intellectual prowess but devoid of genuine sensitivity and care towards each other.

It’s not enough that the British Royal Family have stepped out and spoken about mental health and their own struggles; it’s on us in our homes, in our social circles, in our offices, in our religious organisations who need to open our minds and hearts. We must find our Courage to speak so that no one in our social circles feels so alone that suicide seems to be a reasonable answer.

We must find our Courage to speak about suicide. We must learn to be honest about our own struggles. We should be living consciously that we are part of each other. People are always more important than things. Always.

As I gazed out at the dazzling aqua blue sea and listened to the pounding of the waves on the shore, I was reminded of the pounding of my own heart. I am still here. I learned to live past the sadness and I ended my waltz with Death.

If you feel that life is not worth living, please afford yourself the respect of speaking to someone who understands. You are not alone in this and help is available to you.

Please Stay.

Contact the South Africa Suicide Crisis Line

For a suicidal Emergency contact us on 0800 567 567

24hr Helpline 0800 12 13 14

http://www.sadag.org/index.php?option=com_content&view=article&id=11&Itemid=114

https://www.facebook.com/pages/The-South-African-Depression-and-Anxiety-Group/335962293097734?ref=bookmarks

https://twitter.com/TheSADAG

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.