mental health awareness Archives | A Million Beautiful Pieces

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

Are you okay? I do not want this December to be like the last one. I do not want to talk about vitamins, vaccines, and the virus. I do not want to worry. Worry about the people I love, the people I know, everyone in my life. I do not want to pretend to be happy, and I do not want to live in sad. I do not want to make plans and have them turn to sand. I do not want to dig any deeper to find joy. I am not okay. I have been here before. I have had these feelings before. The reasons were different. I know I have been here before. I planned and packed for the holidays. In ways, my friends could not understand. I unpack. I set the room. Her own duvet turns it into her own bedroom. I remembered the spare headphones. I remembered the plastic stim toy. I bought the must-have foods. I re-organised most of the furniture. The wheelchair must get through. I arranged the activities in advance and prepared everyone. I knew where the nearest hospital was, and I packed the medical reports. Just in case. I cooked. I served. I entertained. I did well. I got to it all. I think it will be okay. I forgot to pack my food (I don’t eat meat), my book and well a couple things that make me…me. It will be okay. I wake. I listen. She calls. I go. I calm fears I do not understand. I go back to bed. I sleep. I wake. He coughs. He quiets. He coughs. He reaches for his asthma pump. I hold him. I feel the morning. I tip-toe out of the room. I set up for the day ahead. I see them, my younger children, racing on the shoreline. My heart swells because they are mine. I smile. I wave. They enjoy the beach. I sit here. I hold her hand. The sand and the wind: too much for her. I'll go to the shore tomorrow. I'll go and dip my toes. It will be quick. I’ll be back. They will need me again. See, I've felt this before. I felt all this, and I felt nothing, all in one go. But then I learnt that all and nothing can work themselves out, when I dared to stop and ask them, what are they all about? I heard them say: we are trying to let you know it’s okay to not be okay. I asked in a shaky voice: what is the way to being, “not okay”, as you say? I heard them soothingly whisper: Come into the day quietly and softly before they all awake. We will teach you what it means to not be okay. I woke without the alarm. I started to write. I wrote to God. I wrote to my heart. I wrote for all the ones like me. I find sometimes, I bake. Sometimes I sing. Sometimes, I just sit and think. I come into the day quietly and softly. I marvel at how much I pack into that short space of time, that makes me…me. I'm okay not being okay. Are you? - Desirae Pillay 2021