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48 Tennis As Therapy With Love Serving Autism

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Podcast Episode 48. Tennis, because of its repetitive nature, is an excellent therapeutic tool which can develop not only physical skills but also builds language and social skills, according to this week’s podcast guest Lisa Pugliese, from Love Serving Autism.

Lisa is the founder and CEO of Lover Serving Autism and has combined her skills as an ex-professional tennis player and Speech-Language Pathologist to develop an innovative program that uses tennis to help young people on the autism spectrum develop skills. These can include the physical skills around increased fine and gross motor coordination and hand-eye coordination. In addition, other benefits include providing aerobic and cardiovascular exercise, as well as improving speed, flexibility, and agility. Playing tennis also helps to increase visual and auditory processing skills.

Lisa explains how the program is also useful in developing the language and social skills of young people. Many of them are reluctant to try anything new because they prefer to know what’s coming. Some struggle to transition to a new sport, which is why Love Serving Autism uses “Social Stories” to help participants learn what to expect from a tennis class. This helps to prepare them and familiarise them with the classes in advance.

As Lisa explains the classes are very structured so, at the beginning of class, the students meet and greet one another, which helps to improve their language and communication skills. The organization also encourages them to partake in different group activities, such as practicing tracking with the ball by rolling it back and forth with a partner as well as practice catching and throwing the ball. Lisa explains how tennis has helped many of the young people become more independent as they progress, and their individual skills develop.

Lisa talks about the challenges of running an organization like this. They are reliant on volunteers, but fortunately, they have plenty of people offering to help out. She talks very honestly about how challenging some volunteers find it to work with the young people on the program. Although the volunteers are all excited about helping, they aren’t sure how to help. They often wait on the sidelines for instruction from the program director and one of the main issues is that they just aren’t sure how to speak to autistic children. It can take time build their confidence so that they feel more comfortable helping and being part of the team.

This applies equally to the tennis professionals Lisa uses on the program. They quickly find they need a different set of skills and have to think of new ways to teach the sport. But, as Lisa notes, what they learn on this program will make them so much more effective as they go on to teach other young people who have additional needs. In a sense, they will serve as ambassadors for tennis as sport and tennis as a therapy.

Like many similar organizations Lisa has had to navigate the world of funding. She talks about the approaches they use, which include organizing events to raise money and to also promote autism awareness. She also talks about the long-term goals of Love Serving Autism which are to expand the program to more locations across the USA.

Lisa has been able to very effectively combine her passions to change the lives of many young people, impact on the volunteers and tennis professional she trains, and show just how tennis can be used as a therapy in a way which is fun but also meets the long-term objective of building the self-worth of the young people she serves.

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49 Carving Job Opportunities at Pure Innovations

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Podcast Episode 49. Job carving can help create sustainable employment opportunities according to this week’s podcast guest Neil Willows from Pure Innovations

Neil is the Assistant Internship Contract Manager at Pure Innovations which is based in Manchester in the UK. His role is focused on using supported internships to help young people gain work skills and find long-term employment. Neil explains how their supported internship programme works helping to develop real employability skills. They work with local companies to provide a range of work placements and job opportunities for young people. Ongoing support is also provided to the employer and their staff. Some have limited experience of working with young people with additional needs and so, having a support system really helps them ensure any issues are dealt with quickly and effectively.

Neil talks about how one of the most important aspects of this type of training is around building the young person’s confidence and allowing them to showcase their talent to employers. Whenever the young person experiences what might be a barrier to employment, they are helped to find ways to overcome it. The example Neil uses is a young person who struggles to tell the time which could then lead to them being late to work. Together with the young person they look at the best tools to use to overcome the issue such as using a mobile phone alarm or other prompts.

Neil also explains the concept of job carving. He talks about how it can sometimes be difficult to find suitable job roles for people with additional needs. However, through job carving where he talks to employers and helps them to identify new roles or to create jobs out of what was not previously a clearly defined job role. Many of these roles can be repetitive and so often suit young people who prefer a clearly defined role. In addition, they might be roles that the employer has not been able to define as a role because of the nature of the tasks required. Neil provides a number of examples of where job carving has led to long-term paid employment opportunities for young people.

Neil and Pure Innovations are not only helping young people build work skills and find jobs they are supporting employers by introducing to them the idea of job carving which can help them effectively fill a variety of job roles with highly motivated employees.

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50th Episode Celebration

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This is a celebration episode, celebrating reaching 50 episodes, celebrating all the amazing guests who have been on the podcast and are out there changing the lives of young people and helping ensure that they will have the kind of independent lives they want.

In this episode, rather than talk to a guest as I usually do, I share my own key takeaways in each of the 3 areas Journey Skills focuses on Purpose, Relationship, and Daily Living. This is an abridged transcript of the podcast with links to all the different episodes mentioned.

Key Takeaways – Purpose
It is all about a job and that should be a paid job. When I started, I firmly believed purpose was enough, but I no longer think that this true. Yes, it’s great to have somewhere to go but, if you’re a volunteer, you are helping but you’re not being rewarded in the same way as if it’s a job.

Young people need to be paid; it reinforces their feelings of self-worth and they are making such a contribution to the organization that it warrants them getting paid. I’m not knocking volunteering, of course I’m not. My own daughter has got very valuable work experience from volunteering. But volunteering should be a step, a means to an end if you were.

Now, obviously, not everyone is not going to agree with me because we all view things differently but if you listen to the podcast, you will hear so many inspirational stories about the impact paid work had on young people and how it changed their self-belief and also changed how their own parents saw them.

So I know some of the objections like “my son or daughter couldn’t do that job”. This is where I think we need to change our perspective. I know it may sound a cliché but maybe we should think outside the box or inside the box, actually, because I believe technology is changing the world of work in a very positive way for young people with additional needs. New jobs using technology are emerging that enable them to access more employment options. There are also some traditional roles, which may not have been previously accessed, but can now be open to them using technology to help them perform the job. Just one example of this was when Alison Berkley from Invictus Enterprises talked about how they use a digital cookbook to help their young bakers.

And for those who still want to test the water of work, there are programs like Shared Lives and Ark Bakery in the UK. Karen from Shared Lives explained the program itself and Hester from the Ark Bakery talked about how it helped young people develop work and independence skills. For some, this smaller, more local program will be the best first step. You could also start at home with practicing for job interviews and if you are at the stage of helping your young person prepare for a job interview then Sam, an experienced HR director, gave some excellent tips on preparing for interviews.

Another thing with work is that we need to think about how jobs can fit into the skills our young people might have and this needs to be done in a way that not only benefits them but also helps the employer. Marjorie Madfis from Yes She Can talked about how small businesses could utilize the skills of young people in the roles that they wouldn’t necessarily see yet as being a defined role. In fact, Neil Willows from Pure Innovations gave this idea a name Job Carving. I think this could be the answer for young people who have a very specific skill where they could be matched with an employer who maybe is yet to define a role in their company but it is one which fits with that young person’s skills. This idea also works for young people who are only able to work in part-time roles as some of these jobs may be limited in the time required.

The one model that I believe works best is commonly called a Supported Internship Model.  It can be used in a large organization like the Marriot Hotel or in smaller organizations like Bemix. The whole idea of a supported internship is for the young person to learn the basics of holding down a job, turning up on time, and working with other people as well as completing tasks when they are asked. They have a job coach and a job developer; the coach being on hand for day to day support and the job developer being the one to help each find paid employment at the end of the supported internship. In some cases, as with Team Domenica, an additional year of support is provided once a job has been found for the young person. But this support isn’t so much for the young person but for the employer to help them make those reasonable adjustments necessary. This whole idea of reasonable adjustment and how easy it can actually be was explained by David Hunter from Acceptable Enterprises.

When it comes to working, I’ve learnt another thing. I may well be one of my daughter’s barriers to work. Quite a few of the podcast guests, who are helping young people in finding work, have mentioned they have often had to deal with parents being too overprotective. Is there such a thing? I wonder. Of course, we are overprotective because we know the vulnerabilities of our own children. I know my daughter is incredibly literal and needs time to process information. This makes her much more susceptible to suggestions. I’ve been protecting her for 17 years now and it’s a hard habit to break. So yes, I plead guilty to that one, but I also need to listen to all those people I’ve spoken to who say that, sometimes it is the parents putting the brakes on.

But it can be harder for parents to let go because the process isn’t gradual, as it is with other children. For me, my older daughter got a part-time job and went out with friends. Of course, I was worried, but I hid it well. With my youngest, she has never had a part-time job and although she goes to movies with friends, I am inevitably the bouncer on the door – keeping her in or at least making sure she is exactly where I think she should be. So, questions like ‘How they will cope?’, ‘How will they get there?’, ‘Will they get anxious or stressed?’ and ‘Who will help them if they do?’ are very legitimate. Cutting the cord is never easy. Soli Lazarus explained this much better than me where she talked about how much more we need to do to give our young people a sense of control over their own lives.

This leads to my other key takeaway which is: think small, not big. Small solutions are better than dreaming of the big Solve-Everyone’s-Problem approach. Again, when I started this, I thought let’s solve all these problems so everyone can use the same approach. I now realize that it’s all about small tailored solutions that suit the young person and the community they are part of.

Nowhere is this easier to see how this can be effective than Project Search at the Marriot Hotel at Heathrow. Project Search is a programme which started in Cincinnati and is now operated around the world. But each of the projects is local-focused, helping a small group of young people learn transferable work skills. The key to this is that each project has a process to start with, ready to be applied. In lots of ways, it takes away those how-to-get-started issues. So actually, the Project Search process is the same wherever you are, but focuses more on helping a small group of people in a specific workplace or community. If you think about it, if helping 20 people get work skills in London is replicated 100 times, that had changed an awful lot of young people’s lives.

One of the core purposes of Journey Skills is sharing ideas, so anyone inspired to start something themselves may it be a business or a social group, there is somewhere to look, someplace to hear what other people who had done it might have to say. They’ve faced the challenges and found solutions so you can refer to their templates. This is going to make things easier for all of us.

And I think that many of us will go down this DIY option. There are plenty of examples of parents getting together to create amazing solutions. When I was back home in Australia last year, I visited Red Inc where parents had created an organization that helps, not only their young people find employment but also, benefiting the whole community. One of my favorite finds, and not for the reasons you might think as an Australian, is Ignition Brewery in London, where Nick essentially started from nothing but an idea and has since then created a sustainable business. These are the projects that should inspire us all to remember that there is a solution to every problem.

What many of these organizations also do is break down barriers. I’m talking here about  L’Arche and The Shed who both share the same guiding purpose to change their local communities’ perception of young people with additional needs. In the case of The Shed, they decided to locate themselves right in the middle of the community so that people were almost forced to interact and to learn about each other and to come to accept each other as valuable members of the local community.

Another idea I think also needs copying is from Acceptable Enterprises where David Hunter talked about their model of 1/3 – 1/3 – 1/3, which means they employ in their businesses 1/3 people who have additional needs, 1/3 who may have experienced other challenges in their lives like homelessness, and 1/3 people from the local community. As David explained, this creates a real sense of the integrated community where people look out for each other and that integration moves outside the workplace into the local community as well.

It needs to be sustainable for the young person and the employer. This brings me back to the supported internships idea, particularly the fact that, for me, there seems to be an understanding, among the people using this model or one like it, that employers need support too. I don’t think sustainable employment comes from the charity I want my daughter to be employed because she is a useful member of the workforce and what she does adds value.

Key Takeaways – Relationships
By now, you might think that I’m a little bit one dimensional eyed, focusing only on employment. But that’s certainly not the case. Like many of you, I worry about my daughter when it comes to relationships. We all know how important friendships are in our own lives, and for our young people finding and maintaining friendships can be a difficult task. But I also think about my own relationship with her. It has to change as she gets older and it’s in relation to this that my first key takeaway when it comes to relationships is letting go.

I’ve talked earlier about letting go when it comes to work, but here, I’m talking more about helping build resilience. One day, I will no longer be around and she will need to have developed the skills that enable her to deal with the world. I’m doing her no favors by not pushing her to do while I’m still around to catch her if she needs catching. One of the most listened to episodes of the podcast is Building Social Skills with Emily Hughes who talked about building resilience early, letting our children make their own mistakes and learn from them. Laura from the Surrey Wildlife Trust talked about similar ideas and the ethos of forest schools to provide a safe but challenging space. Fiona in Letting Go talked about a similar idea of letting our young people find their own solutions.

It’s probably the hardest thing to do as we’ve kept them close for so long and been through an awful lot. Maybe like us, you’ve experienced bullying which makes you extra wary of sending them out into the scary world all by themselves. The thing is, though with my daughter is pushing me away quite hard at the moment, but that’s okay! At 17, she should be less interested in what I think and more interested in her friend’s opinions which are infinitely wider than mine. That’s the normal family lifecycle in action right there. I’ve talked to other parents who have helped me make my family relationships work better. Julie talked about siblings and I took some of her ideas to encourage my daughters to spend time with each other which has strengthened their relationship. Vicki Blair talked about how to manage the stresses of holidays, quite apt at this time of year. Maybe I’ll listen to that one again. I learned from Sarah that social media can be used in a positive way to build online friendships.

Of course, the whole discussion around friendships is a very complicated one. I see them as key to my daughter’s independence. You will find plenty of examples of where social skills and friendships are being developed through organized activities. Jamie Wheeler has created a social group so that her daughter continues to have social interaction after leaving full-time education. She showed it can be done and I think she will have inspired more parents to do something similar. Lisa at Love Serving Autism is using tennis as a therapy to build social skills. Maire and Carmelina give the parents perspectives on how important sport can be in providing a lasting passion and links to the local community.

Another key takeaway and I suppose a reminder too, one that I think we all need every now and then, is that we are all doing okay as parents. Okay that some days we get it wrong, but more often than not, we get it right. Claire talked about being the light and how our main job is to make sure they believe in themselves. Scarlett talked about rising to the challenge- I think we all do that. Taking time for ourselves was also a common theme when I chatted to other parents. Veronica talked about finding a common language – by that, she means support because it’s hard to do this alone. Antonia Chitty talked about the pressures on all our relationships that comes with having a child with additional needs. Again, she tells us to get support to find people to talk to that understand what you are going through.

I strongly believe that what this podcast all about is our strapline sharing stories, sharing solutions. I know because of the focus of the podcast, you are probably near the same stage as me, but if you know parents at the beginning, get them to listen. They could start by listening to Carol, who at the beginning of the journey, is and has all the same questions most parents have at the earlier stages. For anyone with younger children, I can recommend a listen to Diane King who talked about how to use storytelling to build self-worth. Worth a listen just for Diane’s amazingly soothing reading voice. And also, probably very relevant for those who have younger children, the practical ideas to help with sleep from Vicki Dawson of The Children’s Sleep Charity.

None of us has all the answers and I have a very long list of the things I’ve learned from other parents. Practical ideas like how to divide tasks into chunks to make them more achievable from Jackie. After listening to Ian, an ex-police officer, I made sure to help my daughter understand how to approach an authority figure and not be scared.

I’ve heard what it’s like to be a stepdad from Rob. Okay, so I didn’t need to know that, but I know there someone out there that will benefit from Rob’s experiences. I’ve been educated, as well by other parents, like Caroline who does an amazing job of clearly explaining both auditory processing disorder and sensory processing disorder. Christine who helped me better understand Dyspraxia. Linda shared about what it is like for her son with Asperger’s, particularly as he becomes a young man.

All these stories remind us that we are not alone, that others are out there having the same highs and lows as you. We need each other.

Key Takeaways – Daily Living
Without the ability to cook, shop and manage her own house, my daughter is going to struggle with being independent. So, my key takeaway in relation to daily living skills is to start planning early and to be developing these skills every single day because repetition is key.

In lots of ways, it links back to the letting go. In fact, In The Stepping Back episode, Lisa, a Speech and Language Therapist, and Milla, an Occupational Therapist talked about the importance of letting young people know that it’s okay to make mistakes. They also provide some very practical ways that we can develop our young person’s skills in shopping, cooking, handling money and traveling independently.

If you’re looking for help when it comes to wardrobe choices, then Elika and Katie Ellis have some great ideas. Andy and Robyn both offered some great tips on how to help our young people learn to travel independently.

This whole idea of planning early though should be for everything as Laura said in Planning Ahead, “never concentrate on the present, it’s the future you’ve got to always be thinking about.” Laura got me to be thinking about how I need to think 5 years ahead particularly as I watch my daughter race towards her structured full-time education

One area which I think continues to be a challenge, at least for me, is what daily living means in terms of housing. I know it’s possible she can live in a house of her own. My preference would be for her to do this with friends because I believe isolation is a massive issue for our young people. But I know it can be done because Julia provides an example in-house to rent, no experience required. I certainly don’t want my daughter in an annex at the end of the garden or in the house next door to me. And I know she doesn’t want this either.

In my paid day job, I work in property. And if you are wondering, yes Journey Skills doesn’t pay; we fund this it out of our own pockets. But I also know that what I have learned in the last 50 episodes and what I will learn in the next 50 is priceless. Our long-term plan has always been to develop a model to help young people with additional needs to live in homes of their own. Similar to Project Search, we hope to create a model that can be used by others and adapted to their local community and situation. These will obviously vary in terms of support required, but we believe technology will be key and provide an extra layer of safety meaning greater independence. To be honest, my ideal model for own daughter would be her sharing a house with other people, some of whom don’t have any additional needs. This is the kind of integration I dream of for her.

Final Words
It all starts with a job. Paid work is key to my daughter’s future. I plan to do everything I can to find a way for her to get a paid sustainable job. A paid job will not only give her financial independence but also, self-belief and self-esteem. From work, will come her social network, which will sustain her long after I am gone. She will make friends who will wonder why she hasn’t turned up for work today. They will grow to understand her and view her as a work colleague not a person with additional needs. She will have an income her own that she can spend any way she likes.

If I were to sum up a meta key takeaway from episodes 1-49, it would be this overriding sense of optimism. When I recorded the introduction episode, I had no idea that I would find so many opportunities ready and waiting for our young people. It’s all out there! We just need to go find the right solution for our young person so that they have the independent future they want and deserve. This has been an amazing journey so far and I can’t thank everyone I have spoken to enough for giving me their time and their wisdom. And to you thank you for your support.

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51 The Support Group Experience

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Podcast Episode 51. At some point in all of our journeys, we need support. Some of us find it in family and friends, others look to support groups. In this week’s podcast, Elaine Kelly, who runs a support group, talks about how support groups can help when maybe others around you simply don’t get it.

Elaine explains how her support group is run and what she believes is important to consider to provide a supportive and welcoming environment. She reveals how support groups can help against isolation and also make people aware of organizations and resources they can use.

Elaine also addresses why some people don’t seek out support groups and explains how for many people they are only used for short-term support and for others provide a long-term space to share.

Sharing our knowledge and experiences makes all of us stronger. It doesn’t have to be in a support group setting, of course, but wherever we do it we are making the journey of those following us that little bit easier.

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52 Exploring All The Possibilities With Mike Sweeney

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Podcast Episode 52. Rather than waiting until we have to act the better option is to start exploring what is already out there and start actively working towards creating solutions. This is exactly what this week’s podcast guest Mike Sweeney is doing.

Mike talks about the various projects that he has become involved in as he looks towards finding a community for his son Dustin to live in when he is ready for independent living.

Mike talks about how he has moved from thinking of housing as being the most important focus of his efforts to the realization that work would as he puts it “changes peoples perspective”.

He also discusses how the system in the USA is changing towards young people with additional needs being given more control over their own futures through what is known as self-direction. Mike also reminds us how important integration is in terms of ensuring that our young person with additional needs can have an independent future even when we are no longer around.

Although Mike’s journey is not a unique one, there is much to learn from the way he is navigating his way through the challenges. Listening to Mike’s story will help you as you plan ahead for your own son or daughter’s future independence.

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53 People Not Profits At Impacting Lives

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Podcast Episode 53. Getting to know any young person is the essential first step in understanding what they need when it comes to helping them achieve greater independence. This is the core ethos of this week’s podcast guests Trudy and Darren Dzirasa-Payne from Impacting Lives.

Impacting Lives provides housing and associated support services for young people with additional needs.  What they focus on is providing services that work for the individual and balance this with running what is a business by keeping their costs under control through the use of technology and keeping administration costs low. This combined with clear processes helps ensure they can provide what is needed by the young people they support whilst continuing to run a sustainable business.

There is no doubt that services that provide accommodation for young people with additional can often have a bad reputation. impacting Lives and Trudy and Darren show that the residential care home model can be less about the home and more about the care. It ultimately comes down to the core values of the organization.

Whatever the individual solution that works for our young people it is reassuring to hear about organizations like Impacting Lives, and people like Trudy and Darren, who are driven by a greater purpose to help change the lives of individuals and ensure they live the kind of lives they desire.

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54 Flying High With Pegasus

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Podcast Episode 54. All around us are people working in their local communities to make the lives of young people with additional needs better. This weeks podcast guest Sue Clark is one of these people. Sue talks about her work with Pegasus Playscheme which is located on the south coast of England.

Pegasus Playscheme provides activities for young people with additional needs in the summer over a 3 week period. The purpose of this is to help young people participate in independent activities and provide a place where they can meet their friends and even make new friends. Pegasus aims to reduce the isolation that many young people can experience.

Sue explains not only the history of Pegasus but provides from her own experience practical advice and insights into how to set up a similar scheme, which could provide a social outlet for young people in your own community.

Sue also discusses the practicalities of fundraising and the logistics of running a scheme like Pegasus. Sue provides a great example of what can be done by a few people with dogged determination and perseverance. Sue says every town needs a Pegasus but as she is also happy to say she learned while she was doing. Sue reminds us its the getting started that is often the most daunting thing, but the rewards are well worth overcoming the fears.

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55 Making Reality Easier Using Virtual Reality – Part 1

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Podcast Episode 55. The use of virtual reality and virtual worlds can be used to change the future for our young people and just how this is happening is the topic of this episode.My guest this week is Dr. Nigel Newbutt who is researching how virtual reality and virtual worlds can be used to help young people with additional needs access and manage real-world situations that they often find overwhelming.

Nigel explains the work he is doing to develop programs which can be used to help develop employment skills, prepare young people for social situations and provide a way to rehearse situations which could otherwise be overwhelming without a prior opportunity to experience what the encounter might be like.

This is the first of a two-part episode and in the next episode, Nigel talks about what the future of virtual reality might look like and also addresses some the concerns that people have around using these types of technology.

The work being done by Nigel is helping make these technologies accessible and relevant to our young people enabling them to develop specific skills in a controlled way which can then hopefully be translated to make their real-world encounters much easier.

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56 Making Reality Easier Using Virtual Reality – Part 2

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Podcast Episode 56  What might be the future uses of virtual reality, and how do we need to manage this to stop potential dependence on technology? These are the main themes of this episode.

In part 2 of this interview Dr. Nigel Newbutt, who is researching the uses of virtual reality and virtual worlds, talks about what the future uses of virtual reality might be and how it could be used to help young people with additional needs live more independent lives. He also addresses some of the concerns that have been raised about the use of these types of technologies.

The future uses of virtual reality are exciting but, as Nigel cautions, we need to remember that it is simply another tool. We will need to make sure we monitor its actual effectiveness to ensure it has the desired impact of helping our young people develop the skills which will enable them to live more independent lives.

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57 Preparation Is Key on A Curious Journey

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Podcast Episode 57  Days out and going on holiday is an important part of family life, but when a young person has additional needs they can be much more of a challenge. How to make the process easier is the focus of this podcast episode with Lizzie Murphy, from A Curious Journey, offers some tips and ideas on travelling with children who have additional needs.

Lizzie talks about the importance of preparation and making sure that everyone understands what is going to happen, and preparing for the unexpected. She suggests some useful tools which can help manage expectations. Lizzie also discusses practical ways to prepare for each journey, including talking to airlines and researching what destinations are already able to offer in terms of assistance. As she highlights, there are tools out there already which can help make the whole experience much easier for parents and children.

The benefits of having new experiences are obvious in helping build a young person’s confidence and social skills, as well as creating family memories. However, we can all sometimes feel overwhelmed by the preparations needed and its reassuring to know there are proven approaches to dealing with many of the issues that arise.

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