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Podcast Episode 13. Holidays are a time to relax, rewind and recharge, but more often than not they end up being less about fun and more about stress.

Vicki, an experienced travel consultant, shares tips for making travel less stressful. She understands our perspective because she is also a mother to a daughter with additional needs.

Vicki says preparation is key. Have everything you may ever need to hand, and have a distraction for every occasion. She also says anticipation is part of any holiday, and to make this enjoyable for a child with additional needs it is essential to talk about every part of the trip.

Vicki shares her experiences as a parent and a professional. She explains how repetition is key, and that while holiday location variety can be great, sometimes for children with additional needs familiarity makes life easier. Going back to same place can also reduces concerns around safety as well.

Finally, Vicki talks about the need for time away from your children to recharge your batteries and to encourage their independence, and this time away should be guilt free, although she knows as well as anyone else this is easier said than done.

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Podcast Episode 14. Knowing when to take the stabilisers away, and not just on a bicycle, is key to moving towards achieving an end goal.This is the view of Jackie, mother to Joe who has additional needs, including a speech and language disorder.

Jackie explains what works for Joe is repetition and chunking (breaking tasks into chunks) so that they are never too daunting and that achieving the task is realistic. Of course it is easier if it’s something he likes doing but even if it isn’t Jackie talks about the using rewards and sometimes resorting to negotiation to get things moving.

Providing support for each small step along the way brings small successes. Achieving even a small goal builds Joe’s confidence and helps him feel ‘grown up’ enough to try more things. Jackie recommends this type of approach as well as figuring out the end goal and then working backwards by breaking tasks up into easy to do parts. Then, and this is so important, trust yourself to know when it’s time to take away the stabilisers.

Show Notes
[.30] – All about Jackie and her son Joe
[1.40] – Developing independence skills through repetition
[3.20] – Using visual aids
[4.00] – Utilising your negotiation skills
[4.40] – Using computer games to build confidence
[6.00] – Taking away the support gradually
[7.40] – Working on relationships in a safe environment
[9.00] – Developing those relationships skills during holidays
[12.30] – Starting new friendships can be hard and will only come with time
[15.45] – When Joe turns 16
[17.30] – Dealing with a young person’s vulnerability by helping then learn responses
[19.00] – Trusting your own judgement when it’s the right time to the stabilisers away

Key Takeaways
Using chunking and repetition
Find the right time to take the stabilisers away

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Podcast Episode 15. The earlier you know what you’re dealing with the easier it is to seek out the right support and put in place the right plan, this is the opinion of Scarlett mother of Edith. She believes her daughter Edith will achieve a great deal because her daughter has an in born desire to be independent.  Edith’s spirit is inspirational.

Scarlet and her husband swapped countries and swapped schools to give their daughter the best chance possible, and Edith has moved from a child who struggled in mainstream to a child that thrives in the appropriate school. The family were in Switzerland when Edith was diagnosed the intervention they got was early and very detailed and even today this is still impacting on her positive progress.

Scarlett talks about how she feels the meeting milestones model is actually detrimental. She also provides some practical tips on how she helped her daughter to be able to do tasks requiring gross and fine motor skills.

Going your child’s pace is essential as its helps build confidence and self-esteem leading to a greater desire for independence.  Finally, Scarlett reminds us that as parents/carers we need to believe in ourselves and the great job we are doing.

Show Notes
[.30] –     All about Scarlett, her daughter and family
[1.00] –   The Swiss way
[2.00] –   The benefits of an early diagnosis
[2.35] –   Patience is the key and sometimes the system doesn’t help
[6.30] –   Tips on modelling tasks that need gross and fine motor skills
[10.30] – Rising to the challenges with strength and spirit
[13.00] – The importance of self-esteem and going at your own pace
[15.00] – The quest for independence and building the skills needed
[17.00] – As a parent believe in yourself

Key Takeaways
Be patient
Trust yourself

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Podcast Episode 16. Everyone’s journey is very different but sometimes listening to someone else’s journey can help us on our own way. This week we talk to Carol, mother to Leo, about her and her family’s journey with him. His leaving home is still a way off for them, but there are many small steps to take along the way with which we can all identify.

Leo has had many challenges in his 10 years, but despite this his determination shines through. Finding the right school has been key to his moving forward and finding his place in the world.

While Leo’s parents have started to imagine what his future might hold, they are also enjoying the now where he is a happy boy. One reason for this happiness has been his getting more involved in community based clubs. This is facilitated by a mentor a few years older than him, who helps him navigate not only the activities but also social skills he needs.

Carol also reminds us that sometimes we need to take on the hard stuff and by that she means those family activities that stretch our children with additional needs. By not doing this, not only are our other children missing out but our children with additional needs aren’t being given the opportunity to surprise us.

Show Notes
[.45] – All about Carol, Leo and their family
[1.40] – Leo’s school journey
[3.00] – The achievements to be celebrated
[3.40] – Using reward systems
[4.15] – Sleeping issues
[6.00] – Current challenges
[9.00] – Ways to move forward and will cooking food lead to eating food?
[10.15] – Using holidays to aid learning
[12.00] – Enjoying the now
[14.45] – Using clubs to build confidence with the right mentor
[17.30] – Taking on the too hard things

Key Takeaways
Patience
Choosing a school for their future

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Podcast Episode 17. Finding an interest as child, such as in sport, can lead to a lifelong passion that lasts right through adolescence and adulthood, and provides a strong connection to a community and a focus for life. This is the opinion of Maire who shares her story in this week’s podcast.

Maire talks about how a lack of confidence can lead to a young person to want to give up things they have always enjoyed. Combine that with a growing realisation that they are not performing at the same level as peers who seem to do the same things effortlessly, and the barriers to participation start to get higher.

Maire reminds us that it’s not always easy to manage the expectations of our children with additional needs or even what their siblings expect of them. For her son she looks to sport to help him find his purpose, build his confidence and find his own unique space in the world. As parents that’s our greatest challenge.

Show Notes
[.40] – All about Maire and her son
[1.15] – His primary school journey and finding the right secondary school
[1.40] – Learning life skills
[2.30] – Building confidence over time and with the right support
[3.30] – Making friends isn’t easy
[4.00] – Small slow steps
[4.30] – The challenges of having a younger sibling
[5.30] – When lack of confidence leads to giving up
[7.00] – Sport is the way forward
[7.30] – Stuck in the middle
[8.20 – Mainstream sport not inclusive
[9.00] – Cycling skills
[10.45] – Finding a purpose to build the feeling of success
[12.00] – The future and independent living
[12.30] – Healthy living
[12.45] – The difference boarding has made
[14.00] – The challenges of being a sibling
[15.15] – Getting involved in sport or activity when young so the interest is established

Key Takeaways
Get children involved young in something that interests them, whether it is a sport or another activity, so that this stays with them as they grow older.

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Podcast Episode 18. You need to focus forward 100%, and not waste your energy looking backwards, according to Robyn. Robyn lives in Sydney with her son Riley, his younger brother and her husband. She talks about the early years, finding out Riley has autism and how their family dealt with this news. As she says Riley is a child with autism rather than an autistic child, because before anything else Riley is a child.

Robyn talks about the challenges in finding the right school for Riley and how she and her family were determined he would have every opportunity available to him. As part of this they explored a variety of interventions including speech and language therapy.

Robyn advocates getting on your cranky pants when those in charge don’t respect the value of your child. She shows us there is a time for thought and a time for action. She also talks about the fact that your family, and most importantly your child, must stay the axis of the wheel so that everything works for them not for any preconceived ideas or system. Robyn reminds us that as parents/guardians we are our child’s greatest advocate and that our positivity will permeate throughout their lives helping them to achieve so much more than a system often expects of them.

Show Notes
[1.15]   – All about Robyn and her son Riley
[1.40]   – Getting the diagnosis
[3.40]   – Child first autism second
[5.30]   – Early intervention is missed
[6.50]    – Pulling the cranky pants on
[8.15]    – How great it is to be able to say ‘No thanks we’re fine’
[11.00]  – Utilising the tools that Riley has and finding every resource available
[14.30] – Don’t try to fix what isn’t broken
[15.30] – Look forward 100% of the time
[16.15] – The support wheel with the family at the centre
[17.15] – Moving to mainstream schooling
[19.00] – Don’t worry – He’s my first too

Key Takeaways
Planning ahead
Don’t think about fixing your child they’re are not broken they are unique
Focus 100% ahead not think about whats behind

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Podcast Episode 19. You need to be brave and a bit terrified at the same time when it comes to building independence skills, according to Robyn in the second part of her son’s story. The key is to not underestimate our children and what they can do, but you will always struggle with your own fears when letting them be more independent.

Robyn offers some practical insights into how they have taught Riley travel skills, relying on the mobile phone as the crutch on which he leans so he can go off on his own while still having support available if he needs it. These initial short journeys with purpose have provided him with growing confidence to venture farther away from home.

Robyn also talks about how friendships remain a challenge for Riley, as they do for many children with additional needs. It is Riley, though, who provides us with a genuinely enlightened way of looking at the fact he is yet to find the friendships he desires. According to him, it’s because he hasn’t yet found his wolf pack.

Robyn reminds us that to be brave is also to be terrified but still having the courage to do it anyway. She reminds us also as that as parents we need to let go of our children (albeit slowly and reluctantly) regardless of any additional need so that one day they will be able to let go of us when the time is right for them. Don’t ever confuse slow with never, everything takes the time it takes.

Show Notes
[1.30]   – How the mobile phone helps facilitate independence
[2.10]   – Never underestimate your child and always stretch them where you can
[3.25]   – Your only a phone call away
[4.20]   – Building travel skills
[7.00]    – Finding your wolf pack
[8.10]    – Maybe it’s a boy thing
[11.00]  – A glimpse into the future
[12.50] – What would you tell yourself if you could go back in time?
[13.50] – Slow does not mean never ‘He can swing”
[15.00] – Brave doesn’t mean not being frightened

Key Takeaways
Be brave and let go

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Podcast Episode 20. REDinc offers a model worth replicating when it comes to helping young people achieve their work related dreams according to Mitch Halligan Work and Training Coordinator at REDinc.

REDinc. is based in NSW, Australia, and was originally started by 5 families who found there was nowhere for their children to progress to after secondary school. It now provides a variety of support services, including helping people with additional needs transition into work which they find rewarding and for which they are rewarded appropriately.

Mitch talks about the projects REDinc. has developed, including one with young people who enjoy gaming; most often in the confines of their own bedrooms, they now get together offline to not only to enjoy the gaming aspect but to also create other opportunities for creativity. This has included creating a YouTube channel, where games are reviewed, and publishing blogs. As Mitch says the outcome here is not the gaming but the other skills being developed in the environment and the confidence of interaction.

Mitch explains how Redinc. works hard to ensure all staff are skilled in whatever area they are teaching. They employ professionals to teach students the technical skills rather than relying on volunteers who may not be experts in a specialist topic. The experience of these professionals not only helps the students develop their skills but provides them with a real insight into the professions they may be interested in entering. In addition, having paid staff allows for accountability. That is not to say REDinc. does not value volunteers who also play an important role and provide a link with the community which is integral to success.

Mitch also offers his thoughts around the ongoing debate as to whether people with additional needs should be paid less because they may not complete the task as quickly as others. He offers a practical suggestion, at least one that could work in jobs where productivity and output can be easily measured. However, Mitch also argues that any model, and he uses the sheltered workshop model to illustrate his point, must have within it incentives so that people are motivated and aware that if they work harder they will be rewarded for it.

However, as Mitch is careful to say, it must ultimately be the individual’s choice as to what they do. As he says ‘nothing about without you’ is an important part of his role so that what he does is based on the goals and interests of the person he is supporting. He shares a couple of success stories with us, including a young woman working as a receptionist in her local community and a young man who is finding his own path (with the help of REDinc.) towards a career in nursing.

Finally, Mitch talks about the future for REDinc. and its desire to stay small enough to provide the best support it can. The model works, which begs the question why aren’t there more of these types of organizations? Mitch suggests it is in part a funding issue, but is also down to a lack of coordination, at least in Australia across state borders. He also believes that because REDinc came from families ties, this ultimately makes the organisation focused in a different way and has helped scaffold their success.

Show Notes
[2.15]   – Who are RED Inc
[2.50]   – Mitch’s role and the types of support provided
[3.45]   – Why the outcome based approach is so important
[4.00]   – Real work real successes
[5.15]   – Building other independence skills
[5.45]  – Getting gamers out of their bedrooms and giving them purpose
[6.25] – Employing the right people to provide support and teach
[7.10] – Structured classes with set goals to be achieved
[7.35] – Not forgetting the social side
[8.50] – Real jobs in the community
[9.45] – What about different pay rates for people with additional needs?
[11.10] – Nothing about you without you
[11.35] – Looking at different path to reach the same end destination
[12.30] – The future of RED Inc
[13.00] – Small does work better in this case
[14.45] – Red tape stifles coordinated support

Key Takeaways
Outcomes, progress and choice
Looking until the right path is identified

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Podcast Episode 21. Not giving up, hanging in there – is the theme of this week’s podcast interview with Carmelina. She shares her journey with her son Dominic with us. Sometimes picking your battles is the key, as small things become your focus when you need to be looking at the bigger picture. We need to decide what will make the real differences, and fight those battles.

Carmelina offers insights on relationships. She encouraged sport as a means for Dominic to learn how to develop and maintain friendships. Carmelina explains sport has provided Dominic with a common passion and purpose, and this has enabled him to engage in conversations where he is an equal partner with his peers, who don’t necessarily have the same challenges as him. This common passion helps him because these differences are quickly forgotten in those moments where all that matters is being on the same team.

Having the chance to work has also been key to Dominic developing his independence skills. This sense of purpose has enabled him to develop transferable skills as well as start to understand the types of work he might like to do in the future. It also has meant he has begun to understand the complexities of earning and saving money.

Carmelina also talks about reaching out to other parents who may not necessarily be on the exact same path as you but at least understand some of the challenges you’re facing. This support and talking to others is something that can help anyone on what is often feels like a lonely journey and sometimes a scary space. Carmelina’s story reminds us that with perseverance we will get to the space where, like her, we can reflect on the independence skills our children have and where we can realistically imagine where their lives might go in a positive future focused way.

Show Notes
[3.15]   – All about Carmelina and Dominic
[4.30]   – The sporting journey begins at 5 and a half
[5.20]   – The challenges of secondary school
[6.15]   – The gap widens
[7.30]   – Dealing with death in the family
[8.20]   – Sport bridges the gap in communication and maintains friendships
[9.10]   – The part time job building transferable skills
[11.05] – What the future might hold for Dominic
[12.30] – Coming out the end of the tunnel
[11.20] – Top tips from a parent

Key Takeaways
Perseverance
Determination
Pick your battles
Listen to yourself
Help them follow their passions

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