Travelling with special needs: Roadtrips!

We’ve always loved to travel and when kids came along special needs or not we also brought the kids along domestic flights, overseas and more recently interstate road trips.

When they were babies we thought why not they’re still free and we discovered that airlines allow you to bring portacots, prams and car seats at not extra cost. The amount of things we had to pack and brings was the same as any other family.

Before the age of two children who travel on your lap travel free. So we tried to take advantage of this when possible.

Now that the kids are over two, it costs a lot more to travel by air. Also now that my daughter who has cerebral palsy is a lot older and bigger she relies on a wheelchair for mobility.

We also purchased a secondhand vehicle and modified it with a wheel chair accessible a lift with the assistance of VOSS funding.

Having the modified vehicle has made it so much easier to do short trips and also those tourist type trip when you stop on many places along the way because

1) Its a lot easier to simply unstrap the wheel chair and wheel her out if the car (instead of unloading and assembling her pram/mobility chair;  getting her out of the car; strapping her in). It’s made quick stops easier and possible where as we wouldn’t bother before or we would leave her in the car and take it in turns to see the sight.

2) I have worked out how to feed her in the car! Now this might not be possible for everyone, when we had the car modified I chose the configuration so that

Heres a few tips that made our road trip easier:

  • Bottle warmer – what an amazing new invention this plugs into the cigarette lighter – we have them in the back of our van so I will use it to heat packet food or bottles and can still manage to follow her normal eating schedule.
  • Thermos food flask – heat before I go and it keeps warm for a good 4-5 hours. It means I can feed her in the car or stroller as we go.
  • Thermos – for hot water – we’ve used this to make up formula (mix with cold bottled water) on the go to or even for instant coffee.
  • Contigo – for myself – easy to use auto seal makes it spill proof and keeps drinks hot which means I can have hot drinks around the kids.
  • Tissues, Wipes, paper towels. lots of them have them stashed in handy places. Also have an old Huggies travel case that I refill with the cheaper Aldi wipes. I just take the plastic cover off and pop inside the residue glue helps it stay in place. The buggies travel case has a strap so it hangs from her accessible stroller and it’s always there when I need it.
  • Plastic bags – nappy bags (compact), just hang them on the side of her pram and it’s handy to throw rubbish in.
  • Barf bags – the ones with the plastic ring that you get in hospital. Very good to have on standby as our girl is a chucker – one bad cough and it’s round two with the food. To make it useable I line it with a nappy bag. It can double as rubbish in and when she vomits it all gets wrapped up and in the bin. No mess.
  • Packet food – doesn’t need to be refrigerated and is great on standby. We will still use our own cooked food first but if she’s vomited or we forgot to bring some, we can still give her a meal on the road or when out and about.
  • Esky in the car – packed all the frozen meals in the bottom and the cold snacks/ drinks you need at the top.
  • Packing the car so that all the things needed during the trip was within hands reach.
  • Snacks portioned for everyone eg sandwiches in individual sandwich bags, tubs of nuts, etc. means that you can just pass them around the car as needed without having to stop and makes it easier to juggle over bumpy roads
  • Bag of toys, books and iPad to keep the little ones entertained which were rotated one by one.

With these tips we were able to drive for the entire day with only a few short stops for the toilet and lunch. I would be interested to hear your tips as well.


Batching food

“What is she eating?” Followed by “how did you cook it” is the usual question asked when we start feeding our daughter who has CP. She still has trouble with swallowing more solid food but thankfully not yet had a peg. Since she has a lot of allergies (currently cows milk protein and egg) we make all her food so we know what goes in it. To make it easier, ever since starting on solids I’ve always cooked a big batch and then frozen into small cubes. However as she got older the amounts grew. At one point we were measuring a certain number of tablespoons and it wasn’t consistent. So my husband had the brilliant idea of weighing her food. So we currently on about 150g of food. Which is about a whole bowl of food.

The good thing is we know exactly what she’s eating and the nutrients that is in it.

Usually we use a rice cooker to do approx 1 cup of rice, 2 carrots, 1 sweet potato, 2 zucchini, broccoli, salmon and 1L of stock and additional water. Sometimes the meat changes and we’ve tried different stocks and flavours soup bases. We would use the long cook rice setting and often if I put it in the right order and timing it turns out ok. Then I just need to blitz it up in the food processor and tub it up in our decor quarter containers.

However recently we recently received a pressure cooker and it was so much quicker! Instead of 30-60min it cooked in 10 min and was so soft and tender it looked like rice porridge (congee). I popped the broccoli in the end with some beetroot leaves and put it on for another 2 min then blitzed it anyway.

This is a great way to make baby food, risotto or even congee.
Basic recipe

  1. Add 2 cups of washed rice 1 litre of liquid (I prefer to use stock but if not water is fine. For different flavour combinations you can also try  coconut milk/cream  or even soup based – Campbell’s has a nice range) into the rice cooker and start it on the long cook rice cycle.
  2. Peel root vegetables and add them in as you go – I usually put a whole sweet potato, 2 carrots and then chop up the stall of the broccoli and add that in.
  3. Wash and chop up the aromatics like onion and garlic and put those in. These are great for flavour and are immunity boosting.
  4. Then the broccoli tops and any other green vegetables that are quick to cook. Usually I’ll use a zucchini.
  5. For baby spinach leaf I will blend this up separately and then stir through.

So you should wait til the food is cooled before blending and packing it away but often  we’re in a hurry or can’t be bothered so we’ll blitz anyway and then cool before freezing it.

You can use any freezer prod container. I like to use the decor 4 portion containers to freeze as she’s on 130-150g and it freezes in nice little bricks that can be popped out to a little decor container. We have been using the decor 250ml containers but I’ve only just recently changed over to he decor glass matchups (350ml is the smallest).

We also bought a cheap set of scales to weigh the food – this was the quickest way to guarantee consistency across all the meals.

Variation ideas

  • Campbell’s soup bases instead of stock will give it a different flavour.
  • Apricot cchicken – chicken and a can of apricot
  • Coconut cream added in with normal soup
  • Beef stew – use beef stock and some herbs and spices
  • spaghetti bolognaise – either make as normal and blend. Or just add a can of tomatoes and use beef mince.
  • Try out different types of meat

Feel free to experiment with other flavour combinations. If you’ve tried this, what is your favourites?

Keeping on top of all those appointments 

As with any child with complex special needs there are many appointments with the hospital, therapists and specialists. On top of that juggling other kids, work, social commitments it’s a nightmare to stay on top of it all. 

In the early days I would just put it on the one paper calendar and then tuck the appointment letter or referral into her health book. As she grew older there were more appointments and referrals and became harder to keep on top of. 

This all came to a head when my kids started childcare, combined with two early childhood program playgroups at two different special school. 

To keep my sanity I tried paper calendars, giant excel spreadsheets (6 pages long) printed and stuck on the fridge. Nothing worked for long we either had some things on the paper calendar, the phone and kept forgetting to update the other. So I decided to go fully digital and created a Google calendar for each person of the family, one for support workers and one for the family. This allows me to colour code the calendars so at a glance I can tell visually if there’s care for all the kids on any given day. We can also quickly see when appointments are and it’s synchronised across all our phones, devices and everyone has access to the info we need. It also means that my husband is on top of what’s happening and I don’t have to keep track of it all. I can use my head space for more important things. 

I also have a system where soon as any appointment letter arrives:

  1. Take pic of the photo [Update 10/07/17: you can now ‘scan’ (take photo) documents directly into Dropbox and save as a PDF or png pic! Just click the + add button and it will give you the option]
  2. Upload to dropbox account. 
  3. Create shared link
  4. Create google calendar event and add in link. 

Now you always have access to the appointment info when you need it. 
And you can file/ shred the letter. 

You also have history in your calendar so you can easily search when the last appointment was. This was handy when creating my health history one pager. 

This works for me and allows me to manage appointments on the go, digitally without carrying folders of paper around. 

What things have you found helpful to keep on top of appointments?

Kids sick? So many people to call… 2 tips to mange this better

Last year the kids were sick more than 10 times. With my eldest taking a special needs bus to  school, childcare, therapists appointments and carers that help, every time she gets sick we would need to inform about 3-4 people depending on the day. The first few times we would forget and this would mean particular people suffered a financial loss.

We are very thankful that there are so many people in her life but if we didn’t call by a certain time the normal morning routine gets in the way and I kept forgetting to tell the right people on time.

Tip #1: use an app to send group email/sms

I’ve finally found an app that allows me to set up email and/Sms templates to set groups of people. I can create a generic message such as:

“Hi <name> is sick today so won’t be coming in. Hope you have a good day! Thanks <signed parents>”

I can then save this to be sent to different groups of people for the diff days.

Naming the template with the day and location helped me to quickly identify which one I needed to send.

No more trolling through my contacts and missing the one person.
Now when she is sick with a few clicks I can notify her bus driver, school, teacher, carer, therapist and of course my boss all at once.

Unfortunately I can’t link the app that I used here as my phone has since upgraded and it no longer works. There are a number of different apps if you search for ‘group sms email’ that allows you to create templates.

Thankfully, this year is much simpler in terms of carers, school and appointments, so this is no longer needed. Instead of we have gone low tech using a summary sheet of emergency numbers on the fridge and on speed dial on the phone. So whilst, this may not be needed for every family, it’s a great tip for when you need it.

Tip #2: group emergency contacts

Grouping all the numbers you might need in a particular emergency is the best way to be able to use it at a moments notice.

In particular we have a home doctor service that always asks the same information, I keep that all summarised on our emergency contact list. This allows us to easily access it when on the phone, attempting to book a doctor.

Small time savers make the difference. What’s your time saver?

DIY breathe easy air vapour stick bar – attempt #1

The other day we ran out of our doTerra Easy Air stick which we’ve been using daily on the kids to get them to sleep at night through their congestion.
I had some beeswax on hand and decided to try making it from scratch. It was a lot easier than I thought it would be. I didn’t have any cocoa butter on hand but instead found a blog post about the basic ratios for beeswax and virgin coconut oil then just ‘winged’ it.
Since the weather is still quite warm, and virgin coconut oil is still liquid at room temperature, I thought I would start with a 1:1 ratio. Last minute, I decided to add a few tablespoons of jojoba and olive oil making this more into a 1:1.5 ratio.
Here’s my first attempt:
1. Add to a small pot equal parts of beeswax and virgin coconut oil. I used in this batch:
35g beeswax
35g virgin coconut oil
2. Heat and melt over low flame. Let it cool for 5min.
3. Stir in liquid oil (any oil can be used here – should be increased to a total of 1/2 cup oil)
1 Tbsp jojoba oil
2Tbsp olive oil
60 drops of easy air or any other combination of pure essential oil
Note: If it starts to solidify too early, just melt over low heat.
4. Stir and immediately pour into ice cube tray or any other moulds.
5. Set in the fridge and then pop out and store in a cool dry place.

6.  Can be stored separately in a small container for easy use. I found the sistema 35ml dressing pots a good size to store one cube.

Makes approx 6 cubes.


It’s now 26.5 degrees Celsius and found that it was still a little too hard for use, and parts of it took a little longer to melt into my skin. The great benefit of making your own is that you and tailor it to your own preference and needs. If you were to use this for massage, it might be nice to have a more solid bar, but for those with sensitive or thin skin, a softer bar (with more liquid oil) would be beneficial.
Next time I will try increasing the amount of oil vs beeswax using a 1:3 or even 1:4 ratio and possibly try it with shea butter and/or cocoa butter. This will mean an increase to 70g of virgin coconut oil.
This is quite fragrant but because it is so solid it takes longer to melt and so only a small amount comes off at once. I’m also thinking of boosting this other single oils next time.
This still turns out to be cheaper than buying the breathe stick plus I can make a tray of cubes at a time and have it stashed around in multiple places instead of hunting around the house for that elusive vapour stick.
Now that I’ve tried it once, it’s inspired me to think of other combinations of oils – I could use it as a lip balm, foot balm, healing salve, eczema salve… this also makes affordable gifts that can be easily be made in bulk (thinking end of year Christmas presents…) and you can play with the packaging and set it in a little lip balm pot or tin, or lip balm stick.
So there’s still some tweaking to do but I hope that this inspires you to give it a go. There are heaps of recipes out there and sometimes it can be paralysing to choose and then collect all the ingredients, so I like the fact that this has minimal ingredients and it still turned out ok. It wasn’t that hard after all and worse comes to worse, you can always melt it down and adjust the proportions (although it would be best to do this before the oil is added so you don’t accidently evaporate the oil off).
Well, good luck DIY-ing and let me know if you find any great recipes for me to try!
Disclaimer: These statements have not been evaluated by the Food and Drug Administration. Products mentioned are not intended to diagnose, treat, cure, or prevent disease

Pro tip: the simplest way to clean chia seeds

When we heard chia was a superfood, high in omega 3 and  great for the brain, we jumped on the band wagon and put in my daughters oats every  morning. Combined with reflux and our “normal” regular periods of congestion resulting in bringing up the contents of her stomach, we had quite a lot of laundry to do where chia seeds were involved. Now if you have used chia seeds before you would know one of their wonderful properties is to swell up and expand, thinking whatever liquid it is in. Often I. Recipes they will have a step to personal chia before use. However when chia is combined with linen, it would take ages to rinse every little seed from it before putting it in the wash. If we missed a few, it wouldn’t wash out instead be spread to all other items of laundry. 
After a few years, we got better at dealing with the frequent vomits, we started using tissues more often because you can simply throw it out. We became expert vomit catchers, stationing empty bowls and cups within arms reach for quick deployment over the mouth. But this didn’t solve the issue of chia from the odd cough vomit in bed. Chia was starting to become the bane of my existence. Until one day I discovered a better way! 

Enter the humble dish washing brush! We never used these growing up washing the dishes and I knew some people do. I had received one with my food processor and found it was great to quickly get food scraps off the different parts of it before soaping it up with the sponge and rinsing. So one day I thought I would apply this to the chia and it worked! In a few seconds I was able to brush off all the chia seeds. Ready to wash. 

Life changing… I’m keen to hear any other tips/ hacks you have found. 

I hope by sharing this small  change in my life it might make it that little bit easier with the small things someone else’s life and make it just that little bit easier for us to focus on the bigger things in life. For super needs mums we need all the help we can get. 

Social Capital – Community Inclusion for people with a disability – Al Condeluci 

What does inclusion look like in the community? How do I help my daughter with CP to engage with others and be socially included if she can’t hold her head up and can’t talk? I know that exclusion from society is bad eg group homes, special programs etc but I couldn’t quite explain exactly why. On the other hand, specialised programs are great because it meets the person with a disability where they’re at, gives them and their families the support they need and we’ve been personally been enormously blessed by them. These were the questions that were buzzing around the back of my mind when I heard that Mamre had invited Al Condeluci to talk about inclusion.

Updated: Full Video:

Here’s a “summary” (a little longer than intended) from my notes. Note: I only came half way through the session (the doorbell you hear half way through was me). 

The Good Life

When we look at what it means to have ‘the good life’ every person regardless of their ability, race, gender would say that it is to have a

  • job (means to earn an income and contribute to society),
  • a house /place to live/to call their own; and
  • relationships (friends and family).

When it comes to supporting people with a disability it’s easy to provide jobs and housing with funding and support. However, to assist them to make friends and be engaged in a community is more challenging.

Historically people with disability have been devalued by society with their disability seen as a punishment from God or less than human. This has improved over the years with

– charities – to care for them

– medical institutions – to fix them solely focusing on their medical needs.

– social institutionalisation – to watch over them and provide services that cater for their disability but not fully include them in society. This was in the form of group homes, supported apartments, special education, sheltered workshops, work enclaves, separate recreation and separated transportation.

These approaches have their merits in meeting people’s needs to a degree, what was missing from was community (beyond the paid agency/ support) – having friends, social opportunities, people who call and places to go.

“If you belong to no community and decide to join one, you cut your risk of dying in half over the next year.” – Robert Putnam

Having relationships reduces stress and improves the immune system to help ward off bacteria and viruses. This has shown to be true in real life examples such as the Roseto community, who were studied by medical professions to find out why everyone lived longer than the norm despite poor health, eating and exercise habits. They ruled out all the factors and only one they could conclude was that they all belonged to the same Italian community for generations. It was only when the younger generations started to move away for work that their lifespan came down to normal. In the same vein, Hispanic communities are also found to live longer despite harder jobs, lack of exercise. All of this could be traced back to being part of a strong tight-knit community.

Al Condeulci and Rachel Drew (Mamre) also shared their experiences on how this might be created, having just come back from a trip to New Zealand to visit an intentional community called Earth Song. This community of 32 likeminded families built a housing estate with sustainable living and community in mind. There is a community center where the families take it in turns to host a dinner twice a week. Cars are parked on the perimeter to promote walking.

On the flip side when there isn’t community the life expectancy is less and for a person with a disability, it is 15 years sooner. In UK doctors are treating loneliness as an illness. During hurricane Katrina a few thousand died, however, most was not from the direct consequences of the flood, it was because no one knew they were trapped, didn’t know to come and so no one found them.

So how do we help people build communities when there are challenges?

The Power of Social Capital

There are two ways of looking at change:

  1. Micro change – changing an individual’s circumstances – this is about changing the focus from deficits, labels, the differences,  to ‘fix the problem’ and instead focusing on what we might have similar with the person to start building bridges at the personal level.
  2. Macro – community – is made of rules and relationships. There are social norms in each community and rules of engagement. Macro change attempts to change social attitudes through formal ways (laws) or informal ways, through relationships. And how do we do this? By starting the conversation.

What was interesting was when community does not happen organically we create systems to generate a marginal reality. So for people with a disability when they cannot participate and engage in community, we create artificial community’s such as group homes, sheltered workshops, special programs all of which cater to their specific needs but the effect is that they are excluded from society.

The community model for macro change see the problem is not the person, but the assumptions. Instead of focusing on ‘what’s wrong’ with the person, it is about shifting the focus to similarities and shared interests. By doing so bridges can be built, friendships forged and builds social capital – essentially it means that there are people that care about the person with a disability who will be there for them when things go wrong, not because they are paid but because they genuinely care about them as a person. This is fundamental to all human beings we all need to love and be loved.

“One of the biggest flaws in our approach to life is the Western belief that competition creates strong and healthy systems. But competition among individuals is not hte dominant way life works. It is always cooperation that increases over time in a living system. Life becomes stronger through systems of collaboration and partnering, not through competition. ” – Margaret Wheatly

We discussed the exclusion that occurs when there is competition. There is only ever one winner and each time the competition is repeated, the winner is called to somehow ‘defend’ their title or else they are perceived to not be a winner. This ignores the fact they have already won and the reality is that they should always be considered a ‘winner’. There is only one winner and that makes everyone else give up and opt out. We don’t see the best out of everyone when there is competition, infact it often brings out the worst particularly when winning becomes the sole focus at all costs. Often we perpetuate this notion by focusing on ‘who is winning’ rather than how we are playing the game. When it comes to life it is apparent that how we play is much more important than who has ‘won’. However, when we work together we bring the best of what we have to offer and leverage each other’s strengths in synergy to create something greater than what could be achieved individually.

“It’s not differences that divide us. It’s our judgments about each other that do.”

We discussed different ways that might isolate people from engaging in the community and found that it’s not simply other people’s attitudes and judgments they have made about a person, but also the person’s on ideas or personality.

For example, those on the autism spectrum often want to engage in social interactions, however, they don’t know how or can’t bring themselves to because they feel they may violate the social norms or have to be someone they’re not in order to fit in. It essentially boils down to the fact that we all want to socialise with whom we want to socialise with, when, where and how often we want it. We all want the choice to opt in or out and so shouldn’t people with a disability be given that same opportunity?

We first need to get past differences by

  1. Regularity
  2. More similarity

We then talked about different examples in the media where we have seen this done successfully – some examples were:

  • Big Bang Theory – practical guide to making friends
  • Community – ahbed – protrayed as eccentric but normal
  • Speechless – quest to live a ‘normal’ teenage life despite having a carer to assist with communication.

Building community

Firstly a person needs to identify what community they want to be part of, visit with regularity, then find a way to contribute to the community. This can be done by:

  • Look to (or help others) find their common passions (similarities)
  • Look for places (communities) where these common passions are celebrated and try to visit with regularity.
  • Find out what is important in how this community behaves (rituals, patterns)
  • Look for (or become the Gatekeeper) to other community members.

So what is the role of the paid support worker? How can people with more severe disabilities hope to make friends and maintain them?


Gatekeepers are simply people that have the power to allow or prevent people from accessing and/or engaging in the community. So there can be good and bad gatekeepers. When used well, paid funded support workers can be used as a conduit for building social capital. This doesn’t mean getting a certain number of likes on facebook (someone mentioned that this was an actual goal on someone’s plan and used as an example of how the concept of social capital is easily misunderstood). Discussing the place of social media, I discovered it can be good to help strengthen new relationships – keep regular contact, provide information to find similarities, provide topics of conversation to help build bridges in person. However, it is not to be used as a replacement or an indicator of social capital.

Where to from here?

Let’s start the conversation. This is the best way to effect real social change, with one conversation at a time. There is a lot of new ideas to think through and I would be interested to hear more about how others have applied this in real life before. Here’s some further information that I will also be reading. Keen to also hear your thoughts of what you found helpful.


Disclaimer: this is a summary of my view of the workshop given and represents my view of what was said. The full session of the Mamre session is now available on YouTube: