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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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Podcast Episode 28. Being listened to and being understood are important to us all, but this can be difficult when you struggle to find a common language. Language is the way we communicate and if you can’t communicate with others the impact can be devastating. This week I talk with Veronica, Mum to Emma, who has a speech and language impairment. Veronica explains what this means for Emma and her family.

Veronica guides us through her daughter’s diagnosis and the difficulties they had in getting others to acknowledge the problem, and then how that should be addressed. She also talks about the impact of getting a diagnosis and the feelings that come with that.

Veronica discusses the importance of finding people that can support your family and have an understanding what you are going through. She talks about how she found a support network and how it helped her daughter and the whole family. Veronica reminds us that people don’t need to be going through the exact same thing as you to understand how you are feeling.

Finally, Veronica talks about how important it is to teach our children to demand to be listened to and to value their voice. These skills can then be used outside the home to help them become more independent.

Finding a common language helps us be heard by others who can offer support, understanding and remind us we are never alone.

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Podcast Episode 29. Being able to see properly can really transform a child’s life according to Antonia Chitty. As a qualified optometrist and author Antonia is passionate about getting all children’s sight checked. She explains that many parents feel daunted at the prospect of taking their child with additional needs for an eye test. However, as she explains children don’t need to be able to read or communicate verbally to have their eyes tested. Antonia also talks about the signs to look out for that indicate eye issues including preferring things to be close up, squinting and headaches. Antonia provides some very practical tips for dealing with eye tests as well and some useful resources to look at.

We also discuss relationships, an area in which Antonia has also written, and the effect having a child with additional needs can have on relationships – in particular, the relationship between the parents. Many parents report that they feel isolated when their child has an additional need. They often feel that they don’t have anyone or anywhere to discuss the pressures put upon their relationship. It can be very dividing. Antonia advises to go and get help, acknowledge that it’s taking its toll, and reminds us there are strategies available to help us.

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Podcast Episode 30. It is possible to create a viable business while employing people with additional needs and this week’s podcast guest proves that. Nick O’Shea is the founder of Ignition Brewery in London, a successful business employing people with additional needs. At Ignition Brewery it’s all about the beer because as Nick has found his customers don’t mind who’s making the beer as long as it tastes good!

Nick’s journey started whilst he was a regular volunteer at a UK charities event (Mencap’s Tuesday Club) – where people with additional needs meet to socialise. He noticed that most of the people he talked to there wanted 2 things a relationship and a job. Nick didn’t want to start a matchmaking service so he decided to find a way to employ people with additional needs. He looked for a business which was labour-intensive and had repetitive tasks which would suit the people he would eventually employ, but that would also lead to an economically viable business. Ignition Brewery was the result.

Nick explains it has not been without its challenges. It took six months to find a suitable place to brew. When they first started brewing they brewed about 20 batches of beer, some of it was good and some of it was bad! Currently they bottle around 1000 bottles a week. They plan to double that in the near future. They supply local pubs, restaurants and sell at local events as well.

One area Nick talked about was his suprise at the lack of support from other orgnisations involved in the care of people with addtional needs He believes there is more of a focus on providing palliative care and a lack of care based on developing people and allowing them to move on and achieve more with their life.

We also discuss the future plans which include a bar which will create more employment opportunities. As Nick points out technological advances, such as contactless payments, mean that more service jobs are now a reality for people with additional needs.

While Ignition might be based in London the model could be replicated, could be used in other communities and for other types of businesses. This is all about what people CAN do not whether they have additional needs or not.

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