Please download and print a pdf of this list to keep somewhere prominent in your home and workplace. You just never know when you need to call, for yourself, someone you love, someone you work with, or a stranger on the street.
Here is a list of handy phrases for community organisations and sports clubs to use when a disabled person or a family with a child with disability comes to enrol in your program/scouts/ballet class/choir/soccer club/karate club etc.
– Welcome. We’re looking forward to having you in our group! – I haven’t had a child here with xxx before so I need to learn more – let’s figure it out how to make this work together. – Let’s give this a go and see how we can make it work. – What do I need to know to make this a success for you/your kid? – What is your advice on how we can make this work? – How can we really include you/your child in our club/class? Are there things we can change to make an easier transition? – We will find a way – What is the best way to communicate with you/your child? – We are learning how to be better at inclusion – Hi! I’m glad you’re here!
–pic desc: Four circles filled with coloured dots representing people. The first circle, labelled “Inclusion” show all the different coloured dots mixed up inside the circle. The second, labelled exclusion has all the green dots inside the circle, while the fewer red, yellow and blue dots are outside the circle. The third, labelled Segregation, has a big circle filled with green dots and next to it is a smaller circle filled with red, yellow and blue dots. The last circle is labelled Integration, where a small circle filled with red, blue and yellow dots is inside of a larger circle filled with green dots.
Have you eaten in the past three hours? If not, get some food — something with protein, not just simple carbs. Perhaps some nuts or hummus?
Have you showered in the past day? If not, take a shower right now.
If daytime: are you dressed? If not, put on clean clothes that aren’t pajamas. Give yourself permission to wear something special, whether it’s a funny t-shirt or a pretty dress.
If nighttime: are you sleepy and fatigued but resisting going to sleep? Put on pajamas, make yourself cozy in bed with a teddy bear and the sound of falling rain, and close your eyes for fifteen minutes — no electronic screens allowed. If you’re still awake after that, you can get up again; no pressure.
Have you stretched your legs in the past day? If not, do so right now. If you don’t have the spoons for a run or trip to the gym, just walk around the block, then keep walking as long as you please. If the weather’s crap, drive to a big box store (e.g. Target) and go on a brisk walk through the aisles you normally skip.
Have you said something nice to someone in the past day? Do so, whether online or in person. Make it genuine; wait until you see something really wonderful about someone, and tell them about it.
Have you moved your body to music in the past day? If not, do so — jog for the length of an EDM song at your favorite BPM, or just dance around the room for the length of an upbeat song.
Have you cuddled a living being in the past two days? If not, do so. Don’t be afraid to ask for hugs from friends or friends’ pets. Most of them will enjoy the cuddles too; you’re not imposing on them.
Do you feel ineffective? Pause right now and get something small completed, whether it’s responding to an e-mail, loading up the dishwasher, or packing your gym bag for your next trip. Good job!
Do you feel unattractive? Take a goddamn selfie. Your friends will remind you how great you look, and you’ll fight society’s restrictions on what beauty can look like.
Do you feel paralyzed by indecision? Give yourself ten minutes to sit back and figure out a game plan for the day. If a particular decision or problem is still being a roadblock, simply set it aside for now, and pick something else that seems doable. Right now, the important part is to break through that stasis, even if it means doing something trivial.
Have you seen a therapist in the past few days? If not, hang on until your next therapy visit and talk through things then.
Have you been over-exerting yourself lately — physically, emotionally, socially, or intellectually? That can take a toll that lingers for days. Give yourself a break in that area, whether it’s physical rest, taking time alone, or relaxing with some silly entertainment.
Have you changed any of your medications in the past couple of weeks, including skipped doses or a change in generic prescription brand? That may be screwing with your head. Give things a few days, then talk to your doctor if it doesn’t settle down.
Have you waited a week? Sometimes our perception of life is skewed, and we can’t even tell that we’re not thinking clearly, and there’s no obvious external cause. It happens. Keep yourself going for a full week, whatever it takes, and see if you still feel the same way then.
You’ve made it this far, and you will make it through. You are stronger than you think.
WORTH SHARING and SAVING: This is a whole series of social stories with pictures, useful for people with intellectual disability, cognitive disability, children, or those from CALD backgrounds who may not be good at English or simply haven’t experienced hospital visits before.
I have a very wise and very dear friend called Donna. She has ten children, and Caleb, her youngest, is now a young aspiring Paralympian table tennis athlete. I have learned a great deal from Donna, parent extraordinaire, over the years, but today I want to share one little gem. “Spoiling Day” Even before her youngest was born, Donna did a “Spoiling Day” each month with each of her kids, who would write their names to reserve a spot in her diary. When Caleb was born with disability and life-threatening medical issues, Spoiling Day became even more important. Donna spent a half day, or a few hours, with each of her children 1:1, doing whatever *they* want to do. It’s special time with Mum. And it didn’t need to cost much, if anything. So for one the kids, they would like nothing better than getting a big bag of hot chips, sitting by the ocean, sharing them with each other, and throwing them to the seagulls. For another, it might have been baking some sweet treats together for the afternoon. For another, it was (and I *love* this one) taking a bag of hot chips to school at lunchtime, and sitting with her son and his friends sharing them in the schoolyard. What a great way to let a kid know they’re important! Finding 1:1 time with that many kids was obviously a challenge, but Donna let their schools know how important it was to her family, so pulling each child out of school for a few hours once a month or so, was welcomed by an understanding school leadership. As you can imagine, time is a precious thing when you have ten kids, and moreso when one of them needs a whole lot more hospital, doctor and therapy time than others, so often Caleb would come along to “Spoiling Day” when he was little, but the focus was always on the child whose name was in Donna’s diary. And Caleb would get his own “Spoiling Day” too, of course. All of Donna’s kids are adults now, but most of them still write their names in her diary for a spoiling day now and then, but now they tend to take her out! So, have you considered a “Spoiling Day” with your kids? The bond between your children will hopefully be there long after you are gone, so supporting all your children, and making time for them can really help build their lifelong relationships well after you’re gone. Thank you Donna for your wisdom.
For more parenting and sibling support and wisdom, Siblings Australia is available to support families who want to better support sibling relationships, and they are a registered NDIS provider. Just a few hours consult with Kate Strohm from Siblings Australia can be such good value. Check them out at https://siblingsaustralia.org.au/
pic desc: a family photo taken at a fairly formal event. Donna standing in the middle of a dozen family members including a babe in arms, behind some of her sons, including Caleb who is sitting in his wheelchair. Everyone is dressed up beautifully in frocks and suits with some very large helium filled gold sparkly balloons behind them. Nearly everyone has a wide smile on their face. (Posted with permission from Caleb and Donna!)
Join Roland and Evie Naufal as they have the kind of conversations that come about when passionate people aren’t afraid to speak their mind and would rather start a fire than put it out.
EPISODE 9: 𝙎𝘼𝙈 𝙋𝘼𝙄𝙊𝙍 𝙊𝙉… 𝙀𝙑𝙀𝙍𝙔𝘿𝘼𝙔 𝙄𝙉𝙉𝙊𝙑𝘼𝙏𝙄𝙊𝙉 In this episode we speak to Sam Paior, founder of the Growing Space about supporting people to live good lives and setting the bar higher for what we call innovation.
This was recorded in Melbourne a month or so ago, and we really had fun. I’m not one to hold back, and I can be pretty blunt, but Roland and Evie corralled me well. I hope you’ll find it useful.
So, as much as it pains me to listen to my own voice, I’m happy for you to hear it 🙂 And I’ll be even happier if you share this with other disabled people, families and your providers.
I hope it helps give Support Coordinators around the country both the courage to step outside of the box, the tools to do it, and a desire to come along to our first ever National Support Coordination Summit in Melbourne on Monday June 24th. Evie and I (Sam) are co-hosting the #SCSummit as volunteers to raise funds for our peak pody, which aims to lift the standards of Support Coordination and Plan Management across the NDIS, and do a great job for the participants and nominees we work for. https://www.scsummit.com.au/ get in fast – we’re a bit shocked at how quickly this is filling.
Pic desc: A line drawing image with a dark background and the logos for Disability Services Consulting, with their logo, the title “Disability Done Different – A Candid Conversation with Sam Paior” with three cartoon images across the bottom L-R Roland Naufal, a dude with black hair, a green shirt and dark jacket, then Sam Paior, with a blonde Bob, wearing glasses, a round pendant necklace and a boring blouse, and Evie Naufal, with longer brown hair, wearing a red pinafore and stripey shirt underneath. All are smiling.