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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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Podcast Episode 22.There’s a solution out there for every challenge, including finding clothing designed to make getting dressed easier. This week we talk to Katie Ellis, from The Able Label, a UK based clothing manufacturer.

The company was originally started to help Katie’s grandmother, who had Parkinson’s, find clothes that were both fashionable and functional. The company has now grown to providing clothing that has been adapted (based on comprehensive research with customers and professionals) for the variety of customer lifestyles.

Katie explains some of the innovations the company has developed, including color coordinating to give visual clues when dressing and the use of fabrics and fastenings to make getting dressed independently doable for most people.

While most of us never think about getting dressed, some people struggle with this task, and Able Label provides clothes that given them greater opportunities to be independent without having to sacrifice fashion for functionality.

Show Notes
[3.45]   – The history of The Able Label
[6.00]  – The challenges the business faced
[8.00]  – Marrying fashion with practicalities
[8.30]  – Designing for lifestyle not age
[9.15]  – Listening to the customer
[9.40]  – Lime is for left and red is for right
[10.15] – Not just any old velcro

Key Takeaway
There are solutions out there

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Podcast Episode 23. Independence can be reached in many ways. Shared Lives in the UK offers one approach to help people with additional needs develop independence focused skills based on a holistic approach. This week we talk to Karen from Shared Lives who explains how this innovative program works

Shared Lives matches hosts with people requiring support to develop certain skills. It offers a more individualized and a supportive family and community focusing approach. There are a variety of ways to access the program, whether that be a full time placement within a family or day opportunities where hosts might teach specific skills such as baking.

Karen explains how Shared Lives works and the benefits of being in a home environment with 1:1 support which enables skills to be developed at the pace of the individual. Karen says one advantage of the Shared Lives approach is the ability to tailor to an individual needs and provide sustained support at the level they need for a timescale that suits them.

Karen also talks about the process of selecting people to be hosts and how it ensures the safety of the individuals being supported. The unique approach to matching hosts to individuals is also discussed and the way it enables individuals to have choice in how and who supports them to reach their goals.

The Shared Lives approach works because it focuses on the individual and is not time constrained when it comes to achieving goals. While it may not be the right approach for everyone there is no doubt it provides people with additional needs the chance to not only develop skills and relationships but also to become a valued part of their community.

Show Notes
[3.20]   – Background on Karen and Shared Lives
[4.30]  – The flexibility of the Shared Lives approach
[5.20]  – A success story
[6.10]  – The importance of community
[6.30]  – Using Shared Lives as a stepping stone
[7.00]  – Becoming a host
[9.00]  – The skills that can be gained
[9.50]  – Measuring progress
[10.30] – It’s the amount and quality of the time spent that leads to progress
[11.20] – Understanding the individuals triggers
[12.15] – The lack of awareness of the Shared Lives scheme
[13.00] – Matching people the right way
[14.30] – Choice and control

Key Takeaway
There are organisations out there offering solutions that might suit your young person

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Podcast Episode 24. Most of us go through our day unaware of how our brain is continuously filtering everything our senses are picking up. This filtering means we are only left with the information we really need and we don’t get sensory overload.  This week we talk to Caroline who explains to us what happens when those filters are not working as they should.

Caroline shares the journey of her son James as they navigate the diagnosis maze. She talks about the importance of putting the puzzle of diagnosis together in order to be able to start to figure out the strategies that work for James.

Caroline talks about how finding out that James had auditory processing disorder fundamentally changed the way he was being taught in school. She explains not only what this disorder is in everyday language but also how it impacts on James and the strategies they use to help him.

The impact of finding out that James also has sensory processing disorder is also talked about by Caroline. She explains in an easy to understand way what exactly this is and helps us understand how much we don’t know and don’t think about our own senses.

If you have ever wondered how to help someone you know cope with a world they sometimes find overwhelming, then you will find value in this podcast. Caroline has a knack of explaining in an easy to understand way some of the possible reasons why overload happens. More importantly she shares some of the strategies that helps her son James move forward and learn to manage sensory overload.

Show Notes
[2.40]  – The early years with Caroline and her son James
[4.00]  – Realising that planning for the future needs to start now
[5.00] – Why the more you know the more you can help
[7.20] – What is Auditory Processing Disorder?
[9.15] – What this means in a classroom environment
[11.00] – What is Sensory Processing Disorder?
[11.25] – There’s more than 5 senses
[12.15] – Filtering out the extraneous
[13.45] – The sensory profile
[14.40] – Using a sensory diet
[15.00] – Therapeutic listening programmes

Key Takeaway
Really put yourself in someone else’s shoes, literally feel those shoes.

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Podcast Episode 25. When faced with a storm the key is to stay calm and get prepared for whatever it might bring. Sometimes dealing with the system and fighting for your child with additional needs is like sailing into a storm. This week Caroline, in part 2 of her interview, talks about her experiences of staying calm and getting prepared.

Caroline starts off by reminding us that parenting is already hard without having the extra challenges that having a child with additional needs brings. As Caroline says, as new parents we are often left to cope until a professional decides that they know better and suddenly we end up being sidelined. It is then that we need to stay calm even if our most natural responses might be anger or frustration. She explains her own experiences and how she learnt the key skill of not saying what she really thought.

Caroline advocates becoming an expert yourself to help you deal with the experts who are sometimes deciding your child’s future. Research is key, in her opinion, so you become aware of what options are out there, even what new thinking is happening that could change the direction of your child’s life. Some of the professionals you deal with will welcome your knowledge and input and see it as a way to make their job easier. Others, and they will be a minority, will not be so welcoming of your input but at the very least they will be aware that you are ready and willing to equip yourself with whatever is needed to get the best for your child.

We finish the interview by coming back to Caroline’s son James and what his future might hold. Caroline shares his thoughts on future careers and as she says some might need a little more thought and others will rely on some technological advances. But the world is changing, and with that more options open up that we could never have imagined.

Caroline’s experiences of her journey with her son are unique to her and her family but there will be similarities with your journey in there. Sharing our unique stories helps everyone because even if the road taken is different our destinations are all the same – our children maximizing their own unique talents.

Show Notes
[2.30]  – Parenting is hard but even more difficult is your child has additional needs
[3.05] – You are the expert on your child until it starts to cost money then you’re not
[3.45] – Maintaining the persona of the reasonable parent
[4.10] – What you can and can’t say
[5.00] – Be proactive
[5.30] – Wait until later to be angry and frustrated
[6.20] – Educate yourself so you know what is available to help your child
[7.50] – Be that positive parent at all times
[8.30] – The career options James is considering – astronaut/lego designer/professional gamer
[11.00] – The future always has more questions than answers

Key Takeaway
Stay calm even if it the hardest choice
Become the expert on what options are out there for your child

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Podcast Episode 26. Being a step parent brings with it some unique challenges. In this episode, Rob Step Dad to two boys one, Thomas, who has autism and ADHD, talks about his experiences as a stepdad.

The first challenge for many is what to be called. Sometimes Mum or Dad isn’t the right option. Rob happened upon a fairly unique solution to this issue and you will hear from him why he is now known by family and friends as “Kiwi”. And it has nothing to do with New Zealand.

Rob shares his thoughts about coming to parenting at a later stage.  He suggests that it is a different experience at least for him.  Rob also discusses sibling relationships and the impact our own family history can have on the way we view sibling rivalry.  He talks about the fact that often when one child has additional needs things what should be seen as normal sibling interaction (arguments) are sometimes mistakenly attributed to additional needs.

Finally, Rob addresses what the future might hold for Thomas and the need to support his independence while still providing the safety net he might need.

Rob’s experiences are unique but in telling his story he provides give us with a first-hand insight into what it means to be a Step Dad.

 

Show Notes
[4.45]  – Rob’s journey and why he is now known as “Kiwi”
[6.15] – Why being a step parent is different especially if you don’t have any children of your own
[7.00] – How being an only child or having siblings impacts on your own parenting
[7.30] – How important patience and taking things slow is especially for simple tasks like getting a haircut
[8.30] – Encouraging cooking to develop independence skills
[9.00] – What the future might hold and the dilemma of where do our children live near or with us

Key Takeaway
Step-parenting is hard but can bring a fresh perspective
Siblings fight because they’re siblings not always because one child has additional needs

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Podcast Episode 27. Feeling like you belong to a community and being accepted for who you are is important to all of us. This week we talk to James Cuming, Community Leader, at L’Arche Kent who explains how L’Arche provides both of these for people all over the world, some who have additional needs. James explains the history of L’Arche and how its beginnings drive the mission of creating communities which bring different people together.

James explains how L’Arche provides housing and purpose in a purposeful and community-driven way. This helps ensure that everyone including those with additional needs gets much more than simply a place to live and a place to go each day.

James also shares his views on the language we use when we talk about people with additional needs. He questions why we talk about reviews when we mean appraisals and activities when we really mean hobbies.

Finally, James shares his vision for a project close to his heart the Archangel Brewery. This project, while still in its infancy, could create a business model which James hopes can be replicated so that people with additional needs can truly control their own futures. His vision is that the Archangel brewery will be controlled from boardroom to brewery by people with additional needs and they will make all the decisions about their business and their future.

The L’Arche ethos is so powerful that it should become the norm not the exception when we think of how we plan the future housing and work options for young people with additional needs.

Key Takeaway’s
Community is an essential part of living a fulfilled life
The words we use we do matter and we shouldn’t be using different terms for the same thing for different groups of people

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