Tuesday, 8 July 2014

Introducing our new online community - join today!


 
We are excited to announce that our new online community with Scope is now live, and waiting for you to join! Please do check it out and tell us what you think. 

 

You can visit the online community from the Scope website. It only takes a minute to register, and once you’ve signed in, you’ll be able to set up your own profile page and introduce yourself to others.

Those of you are familiar with Netbuddy will recognise many of the features people enjoyed before, including our wonderful community champions, who will be there to welcome you to the site and make you feel at home. Our community champions come from all walks of life – some are parents, some are professionals and some are disabled people. They have all volunteered their time to make sure the community is a safe, supportive place to be.

In addition to the community champions, our community advisors (previously site experts) have also joined us on the new site, and they will be waiting to answer your questions in their specific area of expertise, such as education, sex and relationships, and behavioural issues. From time to time, they’ll also be joining us for web chats and live events, which you can find out more about in our forum news.

New features

There are lots of new and improved features in the new community too, such as the ‘thanks’ button, which lets you thank people for their advice … and links to social media, so you can instantly tweet or share information you have found useful. Now you’ll be able to follow discussions and topics you’re interested in, and you’ll be notified when people comment on conversations you’ve either started or joined.

You’ll see we’ve set up some groups you may want to join, for example a group specifically for disabled people and a parents and carers group. There are also forums for discussing practical issues, such as work, money, benefits, equipment, technology and education. There are almost certainly going to be others people will want to create, and we’d love to get your feedback on this. Please let us know if you’d like us to set up a new group for you.

This is just the first stage of our new online community. We’ll be developing it further over the coming months, and next we’ll be adding the tips from Netbuddy. We hope you like the new site and continue to enjoy swapping ideas and information with others. This is your space, so let us know what you think!

You can visit the online community from the Scope website, and registering only takes a minute, so why not join today!


Wednesday, 19 February 2014

What does joining Scope mean for Netbuddy?

 

As we get closer to launching the new online community with Scope, we thought we'd take a moment to answer some of your questions about what the future now holds for Netbuddy.

 

Will Netbuddy continue under the same name?

No, Netbuddy will no longer keep its name, however we will continue to do exactly what we've always done – share tips and ideas, swap information and support each other in the forums.
Scope is developing a brand new website, where our new online community will sit. It will allow us to do so much more than we currently can on the Netbuddy site, and to reach a far greater number of people.

 

What will happen to the tips and forums?

You will still find all the tips on the new site, but it will be much easier to search for information. You will be able to join groups and follow discussions on topics of specific interest to you, for example sleep or challenging behaviour or Down's Syndrome. Our wonderful site experts and champions will be coming with us to Scope, plus we will be introducing a whole new range of specialist advisors.

But isn't Scope just about cerebral palsy?

Scope's vision relates to all disabled people and their families. The charity's history is linked with cerebral palsy and it retains a specialism in this area, but its services and activities are available for everyone. At Netbuddy, our specialism has always been in learning disability, but a lot of our tips and information are useful for all disabled people and their families. We hope, by combining our individual strengths, we will create something truly useful.

 

Scope doesn't feel as friendly or as small as Netbuddy. Will it be the same?

It's true we'll be reaching a lot more people by joining Scope, but when something's this good, isn't it only fair to share it?! We've started something unique at Netbuddy, and we're delighted we now have the opportunity to take it further. By joining with Scope we'll be able to swap ideas and information with even more people in the same situation as ourselves. We'll be able to share conversations and support each other on a much greater scale. What's not to like?!

Why are you doing this?

Hopefully we've already answered this question to a certain extent. This is a fantastic opportunity to support more families, so they have the information they need at times of crisis. Nothing beats being able to talk to someone in the same boat, when you've got a practical problem to solve. By joining Scope, we're simply building a bigger boat!

When will all this happen?

Our new online community will be unveiled in the Spring. Scope is currently re-designing its website, and we will be part of that once it launches. We are now in the process of moving all the tips, forums, blogs and info packs to their new home. If you are a forum user, we'll be contacting you shortly. Otherwise, keep watching this space for further information.

If you have any questions or concerns about the new community, or you'd like to offer your services as a site champion, please feel free to email me at emma@netbuddy.org.uk

Wednesday, 5 February 2014

Free fashion workshop for young disabled adults

Fashion may seem a trivial concern, but the clothes we wear and how we wear them has a big impact on how others view us and, more importantly, how we view ourselves, says Katherine Sparkes of the Flamingo Foundation.


Looking good is a big part of feeling good. It’s important for all us, which is why the Flamingo Foundation has launched the Find my Style project, offering free personal styling sessions to young disabled adults.

The first session, which will be held in London on 10 February, will be led by fashion stylist and master image consultant Hannah Jean. Hannah will be working with the group to boost body confidence, help people find their own sense of style, and explore how items of clothing can be adapted to meet their needs.

She'll also showcase some of the key styles for Spring/Summer 2014 and at the end, there will be a chance to try out some of the latest looks and take part in a fashion photo-shoot.

Image consultant Hannah Jean
“Image and confidence in what we wear can make a huge difference, but young disabled people can feel removed from the fashion scene and find it difficult to find on-trend clothes that suit their style and their body," says Hannah.
"This project is a fantastic way to open up the world of fashion and demonstrate that everyone can find or adapt clothes to show off their individuality and tastes.”
The first workshop will be geared towards ages 18-35, and will take place at The Pirate Castle, Oval Road, Camden, London NW1 7EA on 10 February, between 2-4pm If you'd like to take part, please email info@flamingofoundation.org to confirm your free place.

Wednesday, 22 January 2014

What do you want to see in the new online community?

Back in October we announced that Netbuddy was joining Scope to create a new online community. We’ve spent the last few months talking to Netbuddy and Scope followers about what they’d like to see in the new joint community. We’ve done this through an online survey, emails, phone calls, Skype and face to face interviews.

Here are the common things people told us they wanted from the new online community:

 

Shared experiences

Two women talking over coffee

People spoke about the desire to connect with people in a similar situation, in a variety of different and changing ways. Some people came to the sites looking for emotional support, for others it was about getting practical advice – but the common need was to find people “like them”. We want the new community to help people make these connections.

The ability to help others

It’s not all about receiving support – people also had a strong and genuine desire to help others through their contributions online. We want to make it easy for people to ask for and give help by letting people discover areas of expertise, find people who need support and enable people to acknowledge when content has been useful.

 

Immediacy and timeliness

Neon sign which says - open 24 hours
(photo by Leo Reynolds)

With sites like Twitter and Facebook, immediacy has become the norm. The people we spoke to expected immediate responses when they posted online so an online community can’t just run 9am – 5pm, only on weekdays! People expect their posts to be sent out immediately and be notified if anyone responds straight away. We will need to make sure people can access advice from the community whatever the time or the day.

Ownership

People felt strongly about the need to belong to the community. This might mean that staff will occasionally need to take a step back, and give people in the community more control over how it’s run and how it develops. Doing this research and involving people from the community in the process is the first way we’re doing this, and we will involve the community in anyway we can as we progress.
Netbuddy followers told us how much they valued the site champions and experts, so we hope to continue these roles and grow the number of champions supporting people to use the community.

A safe and trusted space

(photo by rightee)
(photo by rightee)

Whilst people wanted ownership and immediacy, they also wanted to be able to use the community to suit their personal situation. This might mean discussing sensitive personal issues, not suitable for sites like Facebook, without fear of abuse or prejudice. We’ll work closely with the community, champions, experts, and staff to make the community as safe, welcoming and friendly as possible.

Thank you

Thank you to everyone who has taken part in the research so far. We’ve learnt so much over the last few months and we will continue going through all the feedback as we build the new community.
We’ll be posting more updates here on the blog and we’ll share any opportunities to get involved. Our focus for the coming months will be on building and moving across the forums from Scope and Netbuddy onto the new online community. If you are a forum user – we will be in touch. Later in the year we plan to start moving the tips and events content into the new community. Again, we'll keep you posted.

We'd like to say a big thank you to Sam Mentor and Ant Mace for conducting the research with us and providing their fantastic insight and expertise.

If you have any questions, please comment below or you can contact me by emailing emma@netbuddy.org.uk

Tuesday, 10 December 2013

My Little Sister, who happens to have Down's syndrome

 

Agi Kolaczynska (11) started making films about her little sister, who has Down's syndrome, 3 years ago and has now won a National Youth Film Festival award. Here she talks about film-making, changing attitudes about Down's syndrome and what sparked off her 'My Little Sister' project ...


I have been an enthusiastic filmmaker since I got my first camera on my sixth birthday, and ever since have take my camera everywhere with me, filming and taking photographs of everything, and I mean everything I see.
When I was eight, my mum found a great new website called Netbuddy which was just starting up, where people shared tips and other disability resourses. She said “Oh that’s a good idea” and subscribed to it. Then she heard about a Netbuddy short film competition, where you had to make a film about living with someone with a disability. So she suggested that I make my own film about what it’s like being Magdalena’s sister. The deadline was that night, so I engrossed myself in editing and recording voiceovers over the year's footage I'd taken of me and Magdalena. I called it “My Little Sister (who happens to have Down’s syndrome)” and uploaded it to Netbuddy.
My film won the competition, which meant it got featured on Netbuddy website, and it was my first ‘upload’ to YouTube. I started getting lovely messages and feedback from all over the world. People started asking me “when is the next one coming out?” And I thought wouldn’t it be be fun to make this into a lifelong project. I made a website and started blogging about our lives together. The film (which now has 23K views on youtube) became the first episode  of “My Little Sister (who happens to have Down's syndrome)” which now has ten episodes in total, with more coming!

Changing perceptions of Down's syndrome

From the feedback I was getting, I could see what a good effect these films were having. They were changing what people thought about Down’s syndrome was and were encouraging a lot of people to feel good about the future. As I got older I experienced first hand some of the stereotypes people have about Down’s syndrome and how hurtful these are to Magdalena and the people who love her. This made me want to make more films about this to show the world all the magical moments we share and the parts of Magdalena’s character that they don’t get to see, as people often don’t look beyond the Down’s syndrome. 
The encouraging comments kept coming and as I heard other people’s stories and experiences of how hard it had been for people with Down’s syndrome in the past, I felt even more strongly about the need to stand up for my sister and other people with Down’s syndrome. I started getting messages from people who knew nothing about Down’s syndrome or had had a completely different view before they had watched my films. Others started asking questions about Down’s syndrome. Many people were writing to me from countries all around the world and featuring the films on their blogs in Spain, America, Morocco…
Then a few months ago, we saw that the National Youth Film Festival were asking for submissions from filmmakers to enter their Youth Film Awards.  We submitted my portfolio of films and to my amazement a few weeks later, I had an email and then a phone call saying that I had been shortlisted for the National Youth Film Festival's ‘Ones To Watch award.’ This award was to honour young people with "exceptional talent and ambition in film." It felt amazing to be recognised for doing something I do every available minute I can.

The National Youth Film Festival Awards

An invitation then arrived to attend the Gala Award Ceremony at the Vue Cinema in Leicester Square! So we trooped down to London, not really knowing what to expect. It was very glitzy, like the Oscars, with actors and producers and golden envelopes with the nominees and winners names being called out and then the winners blown up huge on the cinema screen as they walked onto the stage to be presented with their award. 
To be honest, I felt overwhelmed I had never experienced anything like it before. I didn’t expect to be called on stage as I didn’t expect to win, but as I was sitting in the seats with Magdalena I suddenly heard my name called up, I had won the award! Jim Carter, (who plays the part of Carson from Downton Abbey) presented me with my award and I really enjoyed meeting the other young filmmakers, hearing about their projects and asking people what films they liked watching. 
So, from one idea sparked off by Netbuddy only three years ago and 9 episodes in the series later, I am now embarked on the “My Little Sister (who happens to have Down’s syndrome)” film project as well as other film projects. My films have grown alongside the Netbuddy website and it is thanks to them that I started this project. The encouragement and support from my family, friends and especially from complete strangers around the world keeps me inspired to develop the project further.
I have taught myself and self-funded all my work so far. Now I am determined to learn more and more, and next year I am going to think about how to get access to better equipment, access to training, a website that works better and how to cover the costs of hosting my films online, submitting to film festivals, getting good advice and well the list is endless! Most of all, I will keep enjoying being with my sister outside in nature everyday, nature is my biggest inspiration full of light, sound, movement and colour changes, an ever changing stage set. And I promise I will keep on making movies.

Check out Agi's blog and website See Agi on YouTube  and follow her on Facebook


You can also see Agi's first 'My little sister...' film on the Netbuddy homepage

Tuesday, 19 November 2013

I was bullied because I was disabled

18–22 November is Anti-Bullying Week and we'd like to hear your tips on how to beat bullying. 


Sadly young people with special educational needs or disabilities are significantly more likely to experience bullying than others. Here is a film made by a young member of Trendsetters, a project run by Scope for young disabled people. She wanted to send out a positive message about stopping bullying, which is ...
"If you are being bullied, or know someone who is, tell someone."


Please share your tips on how to beat bullying in the comments box below. In the meantime, here are some positive thoughts from the Trendsetters:
"Be a strong person within yourself, believe in yourself and always have confidence in expressing your emotions."
"Bullying can happen anywhere so don't let anyone take advantage of you. You have the right to say no to anything and you have the right to be yourself." 

If you are a parent, carer or teacher looking for advice Kidscape Anti-bullying helpline is open from Monday to Thursday from 10am to 4pm. You can call the helpline on 0845 205 204 or Visit the Kidscape website.

If your disabled child is bullied, you can also Visit the BullyingUK website.

We look forward to hearing your tips and suggestions ...

Wednesday, 6 November 2013

Anxiety and children with special educational needs

Leanne Cowan is a Chartered Clinical Psychologist who has worked extensively with children and adults, both within the NHS and privately. Here she writes about anxiety and depression in children with special educational needs ...

 

Anxiety and depression are often missed in children with special educational needs as it is assumed to be part of a child’s diagnosis, such as autism or ADHD.  Sometimes it is difficult to know whether a child may need further support, or whether the difficulties that you are observing are part of their identified difficulties/difference.

Some things to look for are:

  • Total withdrawal
  • An increase in obsessional or compulsive behaviour
  • Increased verbal obsessions such as needing constant reassurance and asking the same questions over and over again
  • Increased retreat into their special interest
  • Escalating rigidity in routines
  • Refusal to leave the home, go to work or college etc.
  • Increased tearfulness and emotional response to situations
  • Increase in frustration/aggression
  • Threatened self-harm 

 

How to help:

  • Identify Difficulties that may contribute to your child’s anxiety.  It would be important, where possible, to work with your child to include them in helping you to identify difficulties and devise practical ideas to help deal with these difficulties.  There are not always obvious triggers but in instances where there are, ABC charts such as those used in Cognitive Behaviour Therapy can be useful for identifying the cause of the anxiety.  Anxiety provoking events may be internal, such as feelings of being overwhelmed or external, such stranger entering a room.  Anxiety tends to increase at times of transition, changes to routine, at the time of significant events, where there is a lack of structure, perceived high expectations of others, unexpected changes in routine, changes to physical environment, and changes to sensory environment (such as food, fabrics, seasons etc).
  • Anticipate changes and provide visual reminders for regular routines, changes in routine and in preparation of experiences.  This includes the use of a visual routine/timetable, photos, and calendars. Social stories are also very useful in this regard.
  • Routine is important as it provides structure and creates order out of your child’s perceived chaos.  When kids have a sense of structure and predictability, it increases their sense of control and may reduce anxiety.
  • Visual supports are a great way to help kids anticipate when an event will begin or end and to help them shift focus between tasks with reduced levels of anxiety.  This includes the use of photos, symbols, lists and egg timers, to name a few.
  • Support from other children and adults can help a child to feel safer.  Familiarity can help reduce feelings of anxiety.
  • Self-Awareness is an important part of supporting a child with anxiety.  Adults and older children can be taught to recognise these symptoms themselves, although some might need prompting. Teaching the child to recognise emotions and when they are escalating can help them to regulate their anxiety.  This can include the use of feeling faces, stress scales, traffic light recognition symptoms and recognising symptoms of anxiety such as physical reactions to stress.

 

Treatment:

  • Notice when child seems more anxious – recognised symptoms, such as rocking or hand-flapping
  • Self-Regulation is the process of helping the child to respond to the escalation in anxiety by learning ways to regulate and manage their own behaviour and emotions.
  • Using relaxation methods are a way to help your child to calm down.  Methods used depend very much on the individual – watching a video, breathing exercises, listening to calming music, withdrawal to a quiet room, creating a decrease in social demands etc. Practice whichever method of relaxation is chosen at frequent and regular intervals in order for it to be of any practical use when anxieties begin to rise.
  • Massage, aromatherapy, deep breathing and using positive thoughts can be effective. These should be administered with caution and according to the individual child’s likes and dislikes in order to avoid sensory defensiveness.
  • Visualisation through the use of laminated photographs, postcards or pictures of a pleasant or familiar scene may help children to have a visual reminder of how to regulate their anxiety.
  • Physical activity  including using the swing or trampoline, going for a long walk perhaps with a dog, or doing physical chores around the home can help decrease feelings of anxiety.  Many children also experience animals/pets as calming.
  • Distraction/re-direction can shift attention away from whatever is causing the anxiety and create a calming effect.  It is important that this is done when the first signs of anxiety are noticed as when anxiety has escalated it may be difficult for your child to think rationally and respond to you.
  • Social Stories are a very useful tool in helping a child to understand and respond to their anxiety.  It is useful to use the stories to provide them with coping strategies and techniques for managing their anxiety.
  • A Physical space to calm down would be important. Creating an environment or safe space with low arousal or gentle sensory input such as a lava lamp is often helpful.
  • A ‘sensory diet’ may be helpful as many children with sensory processing issues may feel overwhelmed and anxious when they have too much stimulation.  It is useful to be aware of this, particularly in unfamiliar situations.
  • Medication may be indicated in cases of extreme anxiety but this would only be at the advice of a qualified medical professional.

 

Kindling confidence:

  • Anxiety is often greater when children feel bad about themselves.
  • It is often more difficult to boost a child’s confidence when they are constantly reminded about their difficulties and difference in relation to other people.  The extent to which this impacts on a child’s self-confidence and levels of anxiety will depend on their awareness of their difficulties and perceived expectations of others.
  • Like all parents, parents of children with special needs want the best for their children and want to spare them discomfort and pain.  At times this can lead to parents being overprotective of their children, and this can ultimately increase a child’s anxiety and undermine their self-confidence further.
  • Parents being negative or too pushy with their children can also erode confidence and increase anxiety.

Things to do:

  • Give attention to things that your child is doing well.  Noticing when they are managing well and recognising their strengths will boost their confidence.
  • Give them responsibilities.  When you give your child a manageable task that is considered helpful to you, they will feel useful and that they can make a worthwhile contribution.  This will boost their confidence as you are showing them that you believe in them.
  • Encourage independence as this will give your child the message that you know that they are capable.  It is important to do this in circumstances where you know that they are capable, and in some cases ‘guided independence’ may be appropriate.
  • If appropriate, encourage your child to engage in a hobby or special interest that they enjoy.  Enjoying activities will improve their skill or knowledge which will help them to feel better about themselves and improve confidence.
  • Spending special time alone with your child where they direct how the time is spent will give them the message that they are special and that you enjoy their company, which will help to boost their self-esteem and confidence.


Smallprint:

If you remain concerned about your child and believe that more specialist help may be required, it may be useful to discuss your concerns and gain the advice of a suitably qualified child psychologist. A member of the KindleKids team will be happy to have a free, confidential chat to discuss your concerns and how a child psychologist may be able to help.

Remember, you can also talk online to Netbuddy's team of in-house experts at any time about issues concerning your child or adult with SEN.