The end of the year is always a time of reflection for me. It used to be a time of sadness as I’d feel somewhat panicked another year had slipped by and I was aware of how behind BJ was compared to his able-bodied peers. I’m not sure when I stopped that game, perhaps with the end of school. It doesn’t really matter when it happened, the outcome is a more contented me. I still strive to ensure BJ has opportunities and reaches his milestones but in his time. So when I reflect at the end of a year it is usually on the positives. This year has been a roller-coaster of highs and lows but that seems to be the way life goes. I thought I’d share a few bits and pieces.
I feel this year we’ve managed to make the NDIS work to benefit both BJ and our whole family. BJ has had three lovely support workers this year. All three are Occupational Therapy students and delightful. BJ has loved having the independence of outings with the students on weekends and has reveled in the variety and enjoyed getting to know the girls. It took us a long time to find the right people to support BJ and given all the support workers are students it will be an ongoing process but I hope it becomes easier.
Of course, the NDIS has also had it’s challenges. Being told we needed to provide ‘proof of disability’ when BJ has received various forms of government support from the age of 8 months, had us pulling our hair out. It’s not the caring that is as challenging as the red tape. It was especially frustrating when before Christmas we were denied a $1600 repair on BJ’s power wheelchair as there were no funds left in the pot of funding for it. Never mind the fact there was over $40,000 left elsewhere. We have a meeting about it this week and I hope it is resolved and we start off the New Year with a positive feeling about the NDIS again.
BJ finally got his new wheelchair and took a little while to take to it. We forget how important the chair is to his day-to-day life, it’s more or less an extension of him. It gives him independence and therefore it must be hard to give up a much loved chair. Before too long he was zipping about proudly in the new chair and it certainly got some attention for the paint job. It’s his fourth Mogo Wheelchair and we can’t recommend them highly enough for their custom approach to wheelchair fittings. We are huge fans.
This year I formed the Live to 100 Facebook group. It came about after I made a comment on HWWT that as parents in a caring role, we feel we have to live to 100. No one seems to advocate or care in the same way so good health is paramount but it’s often hard in a caring role to make time to take care of oneself. It’s a positive group with people sharing experiences of how they take care of themselves, find time to exercise and the realities of caring. I’ve found between the group, and having a BUPA Caring for our Carers mentor (free to anyone in Australia caring for someone who is on the NDIS), I’ve made some positive changes to my well being. Namely, lowered blood pressure through regular walking.
We lost Hubby’s Mum this year and it was a reminder of how quickly life can change. We were grateful she lived into her eighties and lapped around Australia in a caravan before her health failed. An amazing adventure.
BJ’s travel highlight would no doubt be our trip to the Gold Coast. As a destination it ticked his travel boxes with a mix of entertainment and fun.
We were privileged to cut the ribbon for the new wheelchair friendly walk at Mayfield Garden, which they tell us was inspired by our previous visit and the feedback we shared regarding access.
I was offered the opportunity to travel to China solo and couldn’t quite believe I went. Something I couldn’t have done years ago without the additional supports in place thanks to the NDIS. China was challenging as I looked at it through the eyes of someone with access needs. But it was also enjoyable as it was just such a different travel experience to our usual travels as a family. And I came away with a great new buddy, shame she lives in Melbourne, but we have plans to catch up.
Have Wheelchair Will Travel was a finalist for Best Blog in the ASTW (Australian Society of Travel Writer) awards for the second year and although it didn’t take the gong, it was fantastic to travel to Thailand for the event. I travelled solo and again found a significant lack of access – basics like accessible taxis and buses which we take for granted in Australia. It was lovely to have time with many travel writing friends but especially my blogging friend Amanda from Western Australia.
We had beach adventures at Seal Rocks while testing out the new accessible cabins. The kids and I took adventuring with the beach wheelchair to new heights rock climbing because we wanted to see what everyone else was looking at.
Ending the year with a trip to New York and Disneyland was certainly a dream come true for AJ and I. An amazing mother-daughter adventure which we’ll never forget.
And while we’ve travelled as a family or I’ve travelled solo, I’ve been checking out accessible hotel rooms, cabins and attractions to share as reviews. We also try to give constructive feedback to management as we go in the hope access will be better understood and therefore more user friendly in the future.
While BJ loves seeing himself in Family Travel magazine each issue, there’s a bigger story at play. It’s fantastic to see accessible travel featuring in a mainstream magazine. Not only is it good for those who need the information to have it so readily available, it’s a great way to educate the wider public. They are now seeing beach wheelchairs, TrailRiders and accessible playgrounds included in a travel magazine which I find exciting.
You can read the latest issue of Family Travel here.
Ahhhh the fear of public speaking is real. I admire people who do it without breaking a sweat. With the mindset of always taking opportunities, I have continued to accept speaking gigs and this year shared my accessible travel tips at the Source Kids Disability Expo in Brisbane and the Hunter Disability Expo. One of the highlights is always meeting our readers who come along and say hello. And, I can report, it does get easier the more speaking I do. Plus, it feels great to conquer the fear.
LAUNCHING A TRAVEL BUSINESS
In July I was super excited to announce the launch of our new joint venture with Bound Round (an established travel agency) – Travel with Special Needs, a travel agency which specialises in booking packages for people of all abilities and needs. The aim is to make travel more accessible and affordable, so more of you can take that dream holiday. We’ve always been passionate about holidays and believe that shared travel experiences as a family, connect us and keep us strong. I want to see less barriers to travelling with a disability. Our Have Wheelchair Will Travel community continues to inspire me to look at new ways of assisting people with a disability to live life to the fullest. I know from researching our own travels it can be difficult to find accurate information, competitive prices and knowledgeable agents. We are now turning our road-tested holidays into purchasable packages through Travel with Special Needs. This isn’t a project that could happen without a partner with industry knowledge and an existing infrastructure to enable us to offer good value for money.
One of my favourite bookings so far is a group of people with a disability travelling on a cruising holiday. It’s lovely to see their plans coming to fruition.
If you haven’t already done so, we’d love you to pop over and check out the Travel with Special Needs website.
This year I was happy to contribute to both Sydney Festival’s and Ryde Council’s access and inclusion panels. It’s wonderful to see all the developments in both. I also worked alongside many community advocates, council members and government to help come up with the Everyone Can Play guidelines to ensure all play spaces are inclusive in the future in NSW (our state). Not only was it rewarding to be a part of the Everyone Can Play committee, it was interesting to better understand councils and the way they work.
ONE THING NEVER CHANGES
Throughout the year one thing has remained the same, and that’s BJ’s smile. His love of life, family and new adventures certainly keeps those of us around him positive and keen to make this world more accessible.
I’m excited to see what 2019 brings. I’m expecting it will be further developing the initiatives from 2018 rather than lots of new things but who knows. I hope BJ has a contented year but more opportunities for growth. We can’t wait to bring you more stories and reviews.
Lastly, a big thank you to all of you, to our friends and family. Thanks for reading, taking an interest in BJ’s life and for supporting us by sharing your experiences, thoughts and photos. Bring on 2019 and may it be a good one for all of you.
Annette and Ben Smith says
Even though we are continents and oceans apart, we live and look forward to your blogs.
Keep up the good work and all the best for 2018.
Happy New Year and thanks for following along. It’s amazing how people can live worlds apart but relate to each other.
So enjoyed reading this post, so many significant achievements and lots of great travel too.
Thanks Seana. A lot happened in 2018 that’s for sure. Too much to write down in fact.
Amanda Kendle says
What a year Julie!! And I love the part about BJ’s smile. That certainly seems ever-present, especially when you guys get out and about doing fun activities, and in turn that always makes me smile too.
And yes – it was SO wonderful to catch up with you in Thailand this year! Funnily enough I just wrote the same about you in a blog post yesterday!!! Hope to see you again somewhere this year too. xx
I’m a new reader of your blog. I have twin baby daughters who are both facing a possible cerebral palsy diagnosis and in my research came across your site.
Your writing style is so refreshing and positive and you seem very down-to-earth, which I really appreciate. You and your family have had some great adventures and you have inspired me that no matter what ends up happening with our girls, our lives won’t need to be limited.
I look forward to reading about your upcoming adventures!
What a lovely message to wake up to this morning. I’m so glad our experiences can help in some small way. Particularly at a time when you are unsure of diagnosis. I honestly found that time so hard. Once I knew one way or other I was able to move forward and actually feel I was doing something useful. Whichever way the diagnosis goes for your lovely girls, I hope they have a full and wonderful life. I hope you as their parent can enjoy time with them and remember, timelines are a big deal in the moment. My son is now 23 and no-one but no-one asks when he sat up. When he was little it was the big deal. Try to enjoy them and not get caught up in the timeline.
Thanks for your lovely message.
What a lovely reply! Thank you so much. That is great advice about the timelines. We have two older kids so it is difficult not to compare, especially now the twins are getting older and “should” be sitting up or crawling or … whatever. But their beautiful smiles and delightful personalities are what’s really important!