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October 6th is World Cerebral Palsy Day. In honour of this day, I had to share this and am doing so with Savannah’s permission. It’s my proudest parenting moment and I need to shout it to other families who think their children don’t understand or assume they will never learn. 

Savannah was changing into her swimming costume and when she gets to a certain point, she calls me to help her to finish dressing. So she called and I went to find her not dressed but distraught. Her costume was entangled in the pedal of the wheelchair, and both were lying on her lap. In her efforts to free the costume, she had yanked it off with the pedal. 

She turned to me, still distraught and said this: “Me stupid. I say bad word. I’m sorry mum.” I ask her, who did you say was stupid so I could get clarity of her meaning, and not make my own assumptions. She replies: “Myself. I’m sorry mum. No say bad words about me.” 

Savannah thought she broke the wheelchair and called herself “stupid”. Then apologised to me and herself. She was apologising because ever since Savannah was very little before I even knew she understood me, I repeatedly told her:

  • No one is allowed to hit her, 
  • No one is allowed to be rude to her (with details), 
  • No one is allowed to enter her bedroom or the bathroom without both my and her permission, and lastly 
  • No one is allowed to call her bad words. Yes, I taught her what those words were to the best of my knowledge. 

Now, here before me was this very same child of mine. As a twenty-six-year-old ‘autistic person with cerebral palsy and other stuff’ as she likes to be defined, apologising that she had used a “bad word” about herself. I was so surprised and happy that I actually did a little dance jig. Of course, I then affirmed that yes we all have things we can’t do and that Savannah is correct that it doesn’t make her stupid. I told her in my best Cat in the Hat impersonation which is something she loves me to do: “Savannah you are the truest of true humans I know. And I’m a prouder than proud of all the mamas because we glow.” Then we both laughed. 

If you’ve heard me speak about disability and acceptance, you’ve heard me talk about presuming competency. You’ve also heard me asking my audiences,” Are you prepared for the day our children tell their stories?” What will they say about how we treated them and what we taught them? 

This story of Savannah’s self-talking demonstrates too how so many of us think the worst of ourselves – we often don’t need to be taught that. We set unrealistic expectations and then beat ourselves up when we can’t achieve those expectations. 

I hope like Savannah we also apologise to ourselves when we say or think “bad words” of ourselves, and then ask someone to help us. Teaching children that we all deserve dignity and respect is so important, but modelling that in everyday life is how we do it. 

Also here is my truth –

I have used ‘bad words’ on myself “Darn, that was so ‘bad word’ of me, ” as well as on others, “How could she/he/you be so ‘bad word?” BUT, I’ve tried to apologise especially when my children were in the room because I wanted to set a good example, though I’ve never apologised to myself. Thanks to Savannah, now I know better and will apologise to myself too!

My husband Michael returned to the hospital this morning for another “small” procedure (he has long covid complications). I wish that I was not a frequent-hospital-patient’s-plus-one. Yet, when all is said and done, I’d rather it be me standing next to the bedside of my family, than anyone else. This procedure was meant to only be a day procedure. However, from experience, it was best to err on the side of caution, therefore Michael is staying overnight.

This time of year, from spring until January next year, is what I refer to as our Maverick. Maverick is the giant wave professional surfers chase off Pillar Point Harbour, Northern California. It is known to be one of the most dangerous and treacherous waves, and those who ride the Maverick are hailed as Titans. For me, this season from now until January is my race to be a Titan! This is a look inside what being a caregiver is like for me.

Why is this season more challenging?

Savannah is more anxious during this time. She experiences the change of the season into Spring in ways which makes her physically uncomfortable. To cope, Savannah self-injures. She has improved so much in this, but it is still a coping strategy that she defaults to. Savannah is not even aware that she hurts herself. It is not severe and nothing that Dettol and keeping the skin clean won’t heal, as well as strategies to redirect her and to increase her awareness of what she is doing. Still, just seeing her abrasions, and feeling like I am not doing enough, takes something out of me that is mentally and emotionally exhausting.

Three years ago, an occupational therapist worked with Savannah towards her overall wellness. We have maintained and seen an increase in her wellness since then. Savannah never slept through the night before that, and her longest length of sleeplessness was about three weeks straight. Since her time with the occupational therapist, Savannah only wakes up some nights. That is a huge blessing. However, during this Maverick season, she tends to call out more often while asleep.

Then there are the celebrations like Diwali, Guy Fawkes, and New Year’s Eve when sometimes there are fireworks. In the last few years, Savannah copes much better on these actual days but in the weeks and months prior, she is fixated on what sounds will be heard. She talks about it relentlessly.

Added to this year’s Maverick season, is the uncertainty with Michael’s health and the challenges we’ve had with our car. Savannah takes both issues very personally. She is looking forward to some events over the next weeks and months with friends and family but now that her brain is in anxiety mode mixed with excitement, she needs much more support to cope.

Roll back to this present moment, and Michael’s procedure.

Savannah is very sweet and wants to be near him to pray for him. When she hears Michael having an asthma-related issue, her anxiety deepens. Hence, this was partly the reason for him to stay in the hospital overnight to fully recover and maybe lessen Savannah’s worries.

This is our reality. It doesn’t phase me as much as it is exhausting for me. Still, I cope. I learnt to breathe deeply and get the next task or job done while redirecting Savannah or talking her through it. When I watch surfers barrel a Maverick, I feel like that is an analogy that resonates with how I feel. Like a surfer in a tube of a wave, trying with all her strength to keep her balance to ride out the Maverick without falling.

I also know that no one is coming to save me from this. People will help. They will offer advice, a meal, a shoulder but every morning it remains up to me to get up out of bed, face the day and be brave enough to go again down the rabbit holes of my daughters’ mind and my husband’s health.

How do I cope?

I acknowledge that this is a tough role to sustain. Instead of having a fixed plan to cope, I have several options that I can interject into my day without it feeling like another stretch for my mind and my heart. My activity of preference is walking. When I can’t make the time to do that, I listen to a favourite playlist or a podcast, talk with people who I enjoy being with, or I write. And I love trees. Seriously, love trees. I photograph trees wherever I am.

I also lean into my faith where I trust that God cares for me too. Sometimes I cast my worries on Him, other times I am loud or silently weeping to a friend. At times, I am questioning, and other times I dance joyfully. Always I am not holding these highs and lows hidden inside me. I have a fulfilling life outside of caring for my family too because I need to be in the spaces of my ministry and work to remain soft.

Often family caregivers tell me that it is easier said than done. To have any life outside of being a caregiver. This is true.

So, say it, and keep saying it. Over and over. Until your ears carry it to your heart and mind. Until someone else can hold you, listen to you and help you. Until you know you have your soft space inside of you.

You matter too. Your joy, your dreams, your experiences, your challenges..it all matters. To help make it easier for you to go from saying it to doing it, tell me in the comments one activity, routine, or indulgence that you miss doing, and how you think you can start at it again.

Information about Savannah is shared with her permission.

Today nineteen years ago Michael and I said, “I do”. This morning when we lay in bed, reflecting on our journey, we marvelled at how far we have come. Love is strangely complicated and yet purely simple at the same time. We feel that we are in two places at the once; still newly weds and yet we know so much more than we knew about each other on our wedding day.

We recounted the valleys, and there were a few; and we talked about the mountains we are climbing, and we wondered about the ones we have yet to climb. We thought about the people who stayed with us, and those who we have lost.

I especially struggle with my anniversary because it was at our wedding that my parents’ marriage began to unravel; and what I remembered for a long time about the first year of my marriage was their divorce.

I don’t remember long lazy mornings lying in bed, or walks down sunset lit streets, or suppers that became breakfasts. Instead all those moments were consumed by the pain of watching my parents marriage dying while mine was being born. I felt guilty, frustrated and confused. I remember the agonizing pain that I could not escape from no matter how much I wanted to. Overnight from being in the bliss of marriage we were thrown into the role of elders; caring for everyone else but each other.

During this time I was still grappling to come to terms with Savannah’s diagnosis and the disintegration of my family. Michael was learning to be a father to Savannah, son-in-law and brother-in-law to a decaying family and a husband to me. Savannah started school at an early intervention center and not at the local pre-school as we hoped; and we began the emotional rollercoaster as parents to a child who was labelled “ineducable” and a “person with profound disabilities”.

It is amazing when I recount that time; because if we thought that was going to be our only challenge, we were wrong. We faced Savannah losing her ability to walk independently and Darren (my brother) becoming an amputee. Those two tragedies still bring us to tears. Then Michael was retrenched at one point leaving him without a job for one year. Savannah underwent over twenty procedures under anesthetic and anniversary celebrations and date nights were repeatedly put aside to pay medical bills. Between our three children, we have been with them in medical theatres about thirty some odd times in nineteen years.

We fought for services for Savannah, fought for our right to try different ways to help her live her best life, fought to be understood and accepted as her diagnosis and changing needs made us aliens in our families and faith communities. Amidst all the deep paths that we ventured, God blessed us with Talisa and Eli.  The joys in parenting our three children became our lifeline and our lives.

We did not sit together much because one of us was outside at events with Savannah or with one of the other children when they were too little to sit still.  Or either of us (mostly me because I was home with the children when they were little, and needed a break) attended events while the other parent stayed home because we were too exhausted when Savannah did not sleep for days or when we could not afford to buy new clothes for everyone in our family to attend an event.

We busied ourselves in church activities, awareness programmes for people with disabilities and tried to be available to anyone who needed help. We put our hands up to join committees or babysit for other couples. All of this was good and we made good friends, but all of this was not always necessary.

We are both opposites in many respects. Michael is an introvert where I am an extrovert. He is unyielding when he believes that he is right, and I of course am right! So that makes for interesting discussions. Just kidding. But we both have our own ideas and do not need to agree on everything.

He is not romantic while in my head plays a perpetual playlist of love songs. He is a meat eater while I am a pescatarian. He wants to watch Manchester United and I want to read Jane Austen or Karen Kingsbury or Marian Keyes. He does not dance, and I was born to dance. Oh, but he sings. He wakes up every morning humming a song.

All dressed up for a rare night out back when our children were younger.

When we look back at what unfathomable storms, we weathered with little to no support; we know that we are a witness to God’s divine hand over us. We hold each other with humility for the times we missed out on, when we did not show up in the ways we should have. We embrace with a deeper respect for the others’ strength of character. We come apart to each other; knowing that we are safe indeed.

I thank God for our different seasons. But mostly, I am thankful to God for holding us together through it all. I am thankful that in all my joy and all my pain; being Mrs. Pillay continues to take on a deeper and more precious meaning.

What we know to be true is that love is strangely complicated and yet purely simple at the same time. We are thankful for a love built on the one who first loved us, Jesus; and we are thankful to Him for giving us this secret for our marriage:

“But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law” – Galatians 5: 22 and 23

Happy 19th Wedding Anniversary to my endless love.

Now I am off to make our favourite meal, a Thai style stir fry (meat option and vegetarian option) which we will enjoy in the tranquility of our garden, listening to the soundtrack from our movie ‘Con Air’. That is our story for today: love during the time of lockdown (can’t help trying to play off the title of a favourite book of mine ‘Love during the time of Cholera’ – by Gabriel García Márquez. I highly recommend it.)

A couple of weeks ago, I shared with you that I was one of the speakers at a workshop “Investment In Self”. The event was hosted by Nadia Marillier of Tranquil and Tenacious Minds.

I prepared this piece titled “I Am Every Woman” in forty-five minutes on the morning of the event. Though I had been mulling over it in my mind for about a month, the inspiration of how to write it, only came to me ten hours before I was scheduled to speak.

I am proud of this piece. It is a condensed version of my life story and the events that shaped me told with honesty. I read somewhere that “When you can tell your story without crying, then you know you have healed”.

Here is a written excerpt: “I am the woman who despite the odds, managed to not just survive my life. I managed to thrive in it. I understand today that the star-dust that my life was sprinkled with when I was born, did not turn into ash after a raging fire. Oh no, no, that would not be right. That star-dust was only the embers of the fire that was being kindled within me.”

As many of you know I work from home while being a caregiver to my adult daughter who is a person with special needs. I am not a professional at using a camera or adjusting sound so I hope you will be forgiving of  this when you watch the video. I have a new camera that was gifted to me and I am still learning how to use that so hopefully I will produce better quality videos in the future.

I am however a lover of words and I believe God has gifted me to share the “hard stuff” to touch someone else’s life and in my small way to change the world to be a little kinder and forgiving of each other. So I feel I can’t wait to make perfect videos before I share some of my material with you. As I mentioned I make a living from speaking and writing. By sharing this video you increase my opportunities to work and to take care of my family. For that I will be very appreciative.

If you would like me to hear about specific topics please let me know in the comments. For now, here is “I Am Every Woman”.

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