I just read an article. Apparently the Pope welcomed a child with a disability on stage while addressing an audience. It made me think. And remember. Recently I spoke with the lady behind me in the supermarket queue. Her rogue trolley was trying to escape the confines of aisles and pre-Christmas busyness. So she stopped it with her foot. In asking after her toes, I happened to remark that my toes often got a bashing in this sloping-toward-the-door-supermarket when my daughter was using her manual wheelchair. She said “Sorry”. She wasn’t apologising for my bruised foot.
What is this idea that many people assume those who have something such as cerebral palsy want or need to be fixed? This lady was well meaning. No ill will was intended and I was having a decent day so didn’t take offense. I replied with a hearty “No need to be sorry, she’s just fine thanks.” The encounter did stick in my head for a while though. It had been a long time since someone felt and expressed the sorrys” in public. Don’t misunderstand me. I would take away the pain and make my kids life easier if I possibly could. As all parents would. But my kid is who she is and proud to be exactly herself. More so than even I give her credit for. Recently she had to answer questions about herself for school. It was suggested that I could fill much of it in for her as I know what she’d want to say. But there was no way I would have predicted her first answer. Under “The three most important things to me” she said “I have cerebral palsy (and) I think different(ly)“. I mean….wow. Such insight and knowledge of self for a 15 year old. She is proud of herself not despite her CP but because of it!
Meanwhile, across the world, the Pope has been applauded for allowing a child to approach him and play on the stage nearby. While trying to grab him, his mother apparently explained that he is non-verbal. The Pope then included this interaction in his teachings for the day saying the child had preached to them that they be free like a child. All gracious and seemingly lovely stuff. Until I read on. Apparently his grace then prayed that the child may speak. Now I know this is still coming from a place of kindness and some reports suggested the mum asked for this. But. Did this kid not deliver his lesson because he didn’t speak? It’s a fine line isn’t it. We all want our kids to be happy and have a smooth, easy path. Unfortunately perception in the community seems to be that this means that disabilities need to be fixed. That my kid needs to be something other than exactly who she is.
I realise that I have simplified the issue and in no way wish to dismiss the difficulties associated with having to access the world differently. It can be so very challenging. I get that. I live it, alongside my gorgeous girl. But that doesn’t mean she isn’t enough. In no way would I change her for society or for me. If there was a magic wand I would give it to her to wave as she wishes. And this feisty, happy kid wishes to be herself. That’s the magic.
Today is International Day of People with Disability. The theme this year is “empowering persons with disabilities and ensuring inclusiveness and equality”. That’s quite a mouthful but says it all. As a parent of a child living with a disability, I’m mindful of how I speak of my observations. While my daughter’s disability has a big influence on what I do everyday and how I see the world, it is not my life…her life is hers. So empowerment for her is crucial. Difficult, but crucial. From my point of view, my kid doesn’t need “special” treatment, she simply needs whatever support is required to have the SAME opportunities as her peers. Over the weekend she had a crack at equality that made her mere mother nervous.
She went camping. In the bush. With only pit toilets and scratchy phone reception. Her step dadda (Adda) is a sensible man (I may regret putting that in writing!) so they were less than an hour from home, he had back up systems in place for the back up systems and he organised a carer to go before informing me of their plans. She was so excited the night before she struggled to get to sleep. I survived and so did they. Not only that she had heaps of fun…especially on the first day. There was a storm overnight which was apparently very loud and super wet. But they kept her dry and all got home safely. Isn’t that what it’s all about though? The same opportunities as her peers. Fun times doing what she loves and navigating the challenges that go alongside. Super Adda delivered a perfect example of inclusion and empowerment for the little adventure junkie.
Helping others truly understand inclusion is an ongoing challenge. We have come a long way but the work continues. There is certainly a more inclusive attitude out there in the community. Many more places are truly accessible and Changing Places facilities are multiplying the spots we can happily visit knowing we can all dash to the loo when nature calls. Inclusive and accessible education is also greatly important. For how can someone feel empowered without the experience of learning to make their own choices and having people around them setting high expectations? For our kid this has always meant a combination of school settings, which works better some days then others. I do often feel our girl needs a sign which reads “Watching is not Doing” that she can pop up from her wheelchair as required. She is far more gracious than I but I do see her frustration. I feel when sitting on the sidelines happens, it is not necessarily through lack of care or trying but a lack of understanding. Or maybe a misplaced thought of protection. As much as it makes me anxious (it’s my job as a mamma) she doesn’t need protection. She needs to get in there and have a go in whatever way she can. Luckily for her she has many people in her life who ask “how can she do this?” rather than shying away.
Recently Missy had a medical procedure which would normally require happy gas. Due to a mild illness her breathing would have been compromised using the gas so the staff suggested going ahead without it. As her mum I was firmly leaning to “no-way-are-you-crazy-people-that-needle-is-huge”. But we asked her. She said ok. Watching this kid with a severe movement disorder keeping her body and mind calm and still absolutely blew me away. The doctor acknowledged just how much mental toughness it must have taken. Her body, her choice. Empowerment at it’s best. As a mum I find it really difficult to step back. But the kid is heading toward 16. It is age appropriate for her to be making the medical calls ( with discussion and minimal guidance) and she has been for a few years now.
Today reminds me to keep being brave (as she is) and help her embrace every possibility. It is a reminder to continue to teach others that people with disabilities are people who strive for the same joy in life given the same opportunities. I will, as always, follow her lead.
…you’d better not cry. It’s nearly here, again. I love Christmas. Well a more accurate statement may be I love-d Christmas. Now I find it a bit more difficult than joyful…in the lead up at least, smiles always find us on the day. So, this year, I am trying to get the joy back. Our first Christmas party was on Sunday and it was fun. I’m off to a good start.
But how can one turn from Christmas elf to bah humbug? We have had a few hospitalisations with the girly close to Christmas and other celebrations so that took the edge off the fun for a while. I found myself getting super organised super early just in case I couldn’t wrap pressies or decorate the tree or cook or even have her home….not a fun way to prepare. Then there is the issue of accessing celebrations and presents. It can be so tricky to find a special something for a special someone who has little change in developmental skills as she has grown. The pressure is not from her mind you, it’s all me. But I want her to feel the anticipation and fun and magic of Christmas like I did as a kid. So I try and try to come up with fresh ideas. This year I am wanting to take the pressure off myself. She will be happy if we are happy. She is that kid. So I shall run with a simpler version of Christmas. At least I hope I can.
I have a strategy. When my head seems to be too full of my own stresses I look outward. I find by helping someone else I gain the perspective I need to feel more relaxed and grateful to be exactly where I am. Today I will head to the shops but not for us. Since my kids were very little they have chosen a present for a child their age to donate to someone not as lucky as them. I enjoy watching them choose a gift knowing that Christmas will be a bit brighter for someone out there. Missy has already chosen her gift so she is leaving it to me to get so celebratory food to donate. Over the last few years we have supported the amazing and fully volunteer run Mums Supporting Families in Need.
As for my family, I am aiming to celebrate more purposefully. Fewer, more selective gifts. Making or buying local when I can. Not expecting myself to cook all the food from scratch (a work in progress!) My kids have shared some ideas for smile giving and there are some great ideas for kids and teens with disabilities from Have Wheelchair will Travel here so gift finding and giving is already feeling more relaxed. Our Christmas tree is up and the puppy has happily left it alone so far! I have had fun finding spots for outdoor lights around our new home which I realised held no delight last year. The scene is set.
Whatever this time of year means to you and your loved ones I do hope you are able to be truly present and enjoy. It is beginning to feel a lot like (a joy filled) Christmas!
My girl’s picture could be next to the definition of courage in the dictionary. She is brave. She is forgiving. She has been through more in her 15 years than most adults. This week I watched her undergo a procedure with no anaesthesia. It was something I wouldn’t have been able to do. Most would have balked at the very idea. But she had the choice and made a courageous one. This is not intended to be hero worship. My point is she got to make that choice.
Communication is key. That and some age appropriate autonomy. She may have what many would consider severe disabilities but she is well into her teens now at an age where most young people would have a say in their medical care. So why not her too? Often “why not” for someone with a severe communication disorder would be wrapped up in the “but how?”. For our girl a robust and reliable way to communicate has enabled her to make choices. Not just of which colour top to wear or which DVD she’d like to watch but whether she feels she is comfortable and able to have medication injected directly into her muscles with no GA or gas in order to protect her respiratory function.
This is what World CP Day is about for me. Making sure there is real choice and control. That and the support to achieve it. Cerebral palsy often means my kid does things differently. The fun stuff, the important stuff and the hard stuff. She has a go at all the stuff and she does it her way…as we all hope to do. Giving her the opportunity and the means to do this is part of my mumma job. Having the guts to do it is all her.
Recently I revisited Welcome to Holland. This piece was written by a parent in answer to the many questions of what life is like when your child is born with some extra stuff going on. In the early days it was instrumental in helping me find my feet. In a piece written by Kate Menzies , Kate made an analogy of her life with a disability with a visit to Disneyland instead of the much longed for and flashier Disney World. Both pieces had me pause in wonder at where we are in our travels through both Holland and Disneyland.
Communicating the ups and downs of our life with CP feels like a balance between truth, pity and blame. I have no intention to engender pity here nor to sound like I blame my kid for the challenges we face but the truth can be confronting. Acceptance was difficult to find but once sitting in it’s comfy chair, life has been easier. That does not mean that there are no challenges. Nor does it stop grief biting me in the bum on occasion. It does give assurance that the challenges can be worked through and the grief wallowed in while it is there, before moving on.
Life with a child with additional needs of any kind is different. As pre-parents we all have expectations of, and for, our yet-to-be-born bundle. While career paths may not be locked in nor a residential address for when they are 30 decided on, a little picture of what life will be like develops. As so aptly painted in Welcome to Holland, landing in a completely unexpected place is unsettling to say the least. But it is so gorgeous here. There is no way I would have anticipated even being comfortable in this previously unfamiliar neighbourhood. Days sitting by a humidicrib surrounded by worry and beeping machines were spent wondering what now.
Now, there is this kid that swells hearts. She makes people pause and examine their own lives. She gives perspective to all those willing to see it. She works hard…creates joy…finds a way…is true to herself. This is happiness. This is success. I now know what our life is and it’s (on balance) terrific. There are scary times and we have had a few of those over the last couple of years. There is hard slog. There is the recent realisation that I have been changing nappies for nearly 20 years! All of that is there and true. But this girl, who many still see for what she can’t do, reminds me what to focus on. And then I forget and get cranky and frustrated. So she reminds me again. Sometimes gently.
The very best adventures can happen when travel plans come undone. Maybe that’s the point. To plan and have goals for your life but be able to embrace the wrong turns and enjoy the view. I know I am skirting very close to that old pearl “life is a journey” (insert dramatic music)…but I won’t say it, I promise. For me, with hindsight and experience, I know it wasn’t a wrong turn at all but always the way I was supposed to travel. Because there is nothing “wrong” with our girl. She is who she is and K herself knows that better than any of us. Early on in her life, she happily took the gentle rides through Disneyland all the while preparing herself for the excitement she knew would come when she made it to Disney World. There was never a doubt for her. She will do what she wants to do however she can. And I will be here cheering her on and admiring the tulips as we travel.
I was just making bread and butter pudding. The aroma of vanilla and freshly grated nutmeg brought back happy memories of puddings past. Then my mind jumped. Smell has such memory but it’s not always pleasant. Disinfectant. Alcohol hand wash. Worry. Despair.
The human brain is a strange beast. I was still grating nutmeg as the sounds and sights of the special care nursery filled my thoughts. Monitors beeping…humidicribs lined up…tiny nappies…wires attached to little bodies. So many wires attached to my girls body. I was there. After fifteen years I can still be transported back there in an instant. My breath quickened and chest felt tight.
The person that baby has become is extraordinary. Unexpectedly so, as the future, back then, looked bleak. The person her mother was has…changed. Nutmeg used to just remind me of Christmas.
There is something about taking a moment to be still. To meditate with a coffee (it’s a thing…or maybe I’ll make it a thing!). The warmth of the cup in my hands; the sweet caffeine feeding my addiction; taking time to sit and savour it. Usually it would be an opportunity to relax except I did all of this so my head didn’t explode with a stress induced eruption of frustration and bile.
The disability sector is full of great people…humans living their best lives. Unfortunately, we work within a system that often sucks. (Not eloquent I know but…). Last Thursday had the potential to be wonderful, as every day does. But it wasn’t. Bureaucratic bull won and my girl lost. Not forever…oh no. The fight will continue. It will. But I am weary. The battle is long, constant and draining. The adversary is steadfast and tied to their own rules. Did I mention that I am weary?
The next morning I picked up my weapons prepared to battle again. Instead I paused to called the one person who crossed no mans land for us and thank her. I also voiced frustration at the processes that fell apart and the person I believe dropped the ball. She listened. She agreed it was unacceptable. She worked hard to find a suitable solution. She is not the enemy but an empathetic human working within constraints set by people way above ground level. She still has faith in the scheme she is implementing so I shall try to as well.
I took a couple of days to regroup. The battle plan needed review to head into the next week fully armed but hoping for peace. It seems absurd that an war analogy is so fitting. In an ideal world we would hope our children could access the necessities of life even if we, as parents, were unable to provide them at times. This utopia would see us all looking after each other. Human dignity would be held in high esteem. Our girl has brought many fine people into our lives who aspire to all that is just and good. People who have blessed us with their friendship and generosity. So the battle continues but with the realisation that even the system is not the enemy. It is put in place to aim for fairness and hope for equality. It may not be perfect and the stress of working within in is certainly taking it’s toll but we live in a place of hope.