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A Million Beautiful Pieces October 5, 2022

Self-Talk, Apologies and Presuming Competence – World Cerebral Palsy Day

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!

October is Mental Health Awareness Month. For support join the growing community at JoinPanda.
October is World AAC Awareness Month.
6 October is Word Cerebral Awareness Day.
For support as a parent to a child with disabilities visit our community at Parent Reality

A Million Beautiful Pieces September 12, 2022

Work, Caregiving and Me – A look inside

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.

My Inspiration September 6, 2022

Work, Caregiving and Me Time: What is the balance?

Like many people, I did not sign up to spend my days being a caregiver. I did not make allowances in my personal plans to be a caregiver. I did not even consider it when my daughter was diagnosed as a person with a disability. When my husband and I married, I said the words “in sickness and in health” believing that it was specifically for when we were in our old, old age.

Life takes us by surprise and when we love someone, be it a child, a spouse, a parent, a sibling, or a friend; we become what they need. I fell into the role of being a family caregiver. Respectfully, there are many people who make the choice to be the primary caregiver for their loved ones. Many people are fulfilled and find comfort in that.

I was not part of that group.

I was naïve when my daughter was diagnosed as autistic and having cerebral palsy. I thought if I learnt enough, worked hard enough, pre-empted conceivable and inconceivable issues enough, and did everything her education and therapy teams wanted me to do; Savannah would become a person who did not need as much support. Then I could pursue my personal goals.

That did not happen.

Although at twenty-six years old, Savannah has come a long way. She has levels of independence but not enough that she can be left alone for extended periods of time. She is unable to make important decisions by herself. She needs me more than I anticipated.

Still, I achieved some personal goals but often I had to lay my career, hobbies, and interests aside to help Savannah and care for her. Usually, that is not described as being a caregiver but simply mothering. And I loved that. All of it. Even more so when my younger two children were born, and they kept me busy. Mothering was my joy. My husband Michael was the primary breadwinner, and this rhythm suited us for a while.

Yet repeatedly like many families’ life happened. My husband was retrenched twice. At different times in our lives, one of the five of us, sometimes more than one, required medical care in a hospital and faced periods of recovery. We would have to repeatedly find the resolve to work out a new rhythm. After a time, even that became just how life was.

Most recently, my husband was diagnosed with long covid. He had the virus in 2020, and he just never recovered. This has made us feel more isolated than being a family to a person with a disability ever did. When a person has a disability, at least there is information or professionals to seek out for advice and help. With this diagnosis of long covid, we did not even have the vocabulary to explain what my husband was going through and its impact on myself and the children. With limited information available, it feels as if professionals are finding their way in the dark.

I feel the impact of Michael’s illness the most.

In our home with a person with a physical and cognitive disability, it took diligent organisation, physical stamina, and tons of patience to ensure that we helped Savannah to be supported as she needed without compromising the needs of the rest of the family. Our two busy teens, Talisa and Eli (thankfully Talisa is almost an adult), also need us in the same ways Savannah does, but they have the ability to be independent relative to their age and they can exercise self-direction and safety without us.

With Michael’s ongoing illness and complexities, I became his caregiver and his replacement for the children. I consider myself a caregiver to Savannah too because while I am still mothering her, to maintain some boundaries and to give her and myself autonomy, I find it easier to embrace the phrase “family caregiver”. I am still very much her mum, but when describing how we function “caregiver” works better.

Am I overwhelmed? You bet I am. BUT I am not overcome. I am not lost. I am not unsure of myself. I am not giving up all the parts of my life in which I find purpose and joy.

Why?

Because I knew how to pivot, and I knew what pillars I needed to have in place so that I could still carry myself and my family while continuing to engage in work that fulfils me and gives me joy outside of my family. I need both to be okay.

Join me at 8 pm this evening (06 September 2022) on the JoinPanda app where I will share how I learned to define that “balance” for myself. Simply download the app from Google Play (Android) or the App Store (ios), set up your profile and join my session. There are many other important topics being discussed too on a daily basis which are led by amazing people including mental health professionals. This is one app you won’t regret taking up space on your device.