Tracey Campbell ACT

Margot is 6, has Rett syndrome (Rett UK), and has just finished this amazing work inspired by Steve Backshall and Deadly 60 on CBBC. As an eye gazer user with often a tricky body this has taken a lot of effort for Margot. So I am more than happy to share her great work to get her some recognition! If you are interested in the process I will put the methods in the comments. Both Callie Lawrence and I worked on this piece with Margot. Callie introduced the concept and discussed the idea and two sentences. I researched for facts, did the publishing to Canva and one of the sentences.

I didn't teach Leia to communicate she could complement me. But I will take it.

It is Rare Disease Day, a chance to raise awareness of Rare Diseases. Whilst individually they are rare, together 3.5 million people have a rare disease in the UK. I want to raise awareness that finding people and places that treat people with rare diseases and disabilities is extraordinarily rare. Most of these people are found outside of disability services yet accessing purposeful and enjoyable activities outside of disability land is also extraordinarily rare. It puts my rare girl and 1000's of others like her in a very difficult spot. So if you want to know how to treat a person with rare disease, think about how you like to be treated, start with like a human.

Is 2024 the year you start or reboot your communication journey?

I am holding a group for people looking for more information about supporting others to communciate better and any AAC users out there that want to join at Eastwood Health and Care Centre on Friday 10-12. Please feel free to come along whatever your story. I look forward to seeing you there.

If you can't make it but are still interested, we have a Facebook group you can join https://www.facebook.com/groups/1854265008341658

It was 15 years yesterday since Leia's d-day (Diagnosis day). To be honest I had to look up the exact date as it isn't in our minds as much as it once was. But there are certain things I wish I had known at the time that could have made life got on track a little faster. There is a link to a short blog in the comments.

It's Abbie's birthday today and a great opportunity to draw your attention to the amazing talk by Clare Kassa chief executive of Sibs - for brothers and sisters as part of the Rett UK conference. Being a sibling of a disabled person brings many positives as well as challenges. These are all discussed during the talk. https://rett-uk-2023-conference.heysummit.com/talks/supporting-siblings/

It's the first of December and it is very cold! What better thing is there to do than learn to communicate better. This blog on Supporting Communication will hopefully help you on the way. Learning about communication has no question changed all of our lives. It's a long road, but one now well traveled by many others who can support you. Please do reach out if you have any questions.
Link in the comments.

Still time to register. Will suit many people with disabilities not just Rett syndrome. You can watch live or at a time that suits you.

Gwenda and Grace Rett UK are a lifeline to us Rett Families. I don't know what I would have done without them. Following diagnosis they were there for us supporting and advising and helped greatly. Their ongoing supp

Its AAC awareness month so I thought I would share about Leia communicating last night. We are aware that she is very isolated so we did a Talking Mats with her on activites. Picture below. When we had finished I asked what she wanted to discuss further. She pointed to exercise. I said do you want to do more exercise, less exercise, or is the amount you do okay. She said more exercise. Okay what exercise do you want to do? Eating out and hanging out. Exercise we can all get on-board with.

Its AAC awareness month. The past two days have been full of communication for me.
Communication Partner Training for Rett UK yesterday.
Facilitating a group for adults with Rett syndrome to hang out and talk nonsense last night.
This morning I run a discussion group on What is Communication for local parents.
This afternoon I helped someone who wanted to get control over their life.
That's the ultimate goal of everything I do. For people to be able to buy the phone they want!
I don't focus as directly on communication as I thought I would in this role, but I focus directly on people living their best lives because that's what communication allows us to do. That's why everyone needs AAC.

Can you see the resemblence? This is my favourite thing Leia has ever written. All using an ABC flip chart. (David) Bowie doet (does) very dishly (dishy). She corrected the words by herself too. Leia was writing about the llama. The David Bowie pic is just for comparsion.

Looking forward to talking about planning for the future with parents from Craighalbert Centre tonight on Zoom.

I haven't done too well with my increased social media this year. But I have written a new blog post on understanding behaviour. It's gathering of information that I wished I had known when Leia was younger. Link in the comments.

It's the start of a new lot of sessions at The Craighalbert Centre. We will be looking at planning resources that are more . Allowing the parents and pupils to write plans in their terms but still get the support they deserve.

It's International Women's Day today, and we would like to take a moment to commemorate all of the women who take on a caring role ( often with very little support)❤️

As we know, the majority of unpaid care across the country is carried out by women and girls, and many take on that role out of love or obligation. But neither love nor obligation can ever sustain a caring role.

We need policy and decision makers in this country to recognise and urgently address the disproportionate impact that caring has on women's health, their earning potential, and their ability to have a life outside of the caring role.

And on this International Women's Day, we would love to hear a little less of the platitudes and see a bit more of the actions needed to put in place the emotional, practical and financial support that carers across the country so desperately need.

Happy to all the females in my life:
- My Great Grandmothers, my Grans, Mum, Mother In Law, Aunts, friends, cousins, colleagues past and present, teachers and tutors who have inspired me throughout my life.
- The next generation my daughters, nieces, their friends and daughters and nieces of friends, and of course the wonderful females I am lucky to work with who continue to motivate and challenge the world to be better for them.
- The men who support us all and embrace our identity. My Grandfathers, Dad, Father-in-Law, Brother, friends and of course my husband.
Today I embrace and celebrate all of you.

I do enjoy a good resource. I was more than amused when I came across a vast array of one-page profile templates by Sheffkid whilst doing some research for The Craighalbert Centre. I can think of a few people this cheese one would suit.

It's so I thought I should share one of my favourite books that I wrote back in 2020. It was a hard choice but I went with Dear Tinder. I started writing the books as I recognised that whilst there was support for many of the children who were out of school due to COVID there was little available for pupils whose reading age may be lower than their peers. The books are a mix of parodies and originals all have a low reading age but are aimed at older readers. Link to YouTube in the comments.

It's a Craighalbert Centre night tonight and we are getting practical. We are looking at the tools to help people get their communication rights met. We are talking .

The 28th of February is Rare Disease Day. Angelman Syndrome is a rare disease at approximately 1:15,000. But disability is not rare. Around 1 in 5 people are disabled in Scotland and 1 in 50 have a learning disability. It is important that we raise awareness of rare diseases so people can get appropriate support and help. But perhaps it’s more important that we recognise that disabled people are human and the best support and help they can get is to be treated as such.

Often we think that communication systems are confusing and overwhelming for people, especially if they appear to have limited understanding of spoken words. But using a communication system helps receptive language.

How do you record the communication of the person you support? These are four of my favourite communication resources.
The Communication Chart is by Helen Sanderson Associates – I love the person-centred language. Until the person can confirm that we are right it is just our best guess.
Keisha Tipton made the Communicative Functions Chart based on the Pragmatics Profile of Everyday Communication Skills. It is such a quick and easy reference to allow you to see what areas could be improved on.
Sarah Rivard Co then added this handy extra space so you can explain to others the way in which they meet each of these functions.
Lastly, I made the last one up myself. I was thinking about all the behaviour, movements, facial expressions that we don’t quite understand yet. This is my attempt at trying to help people make sense of them. The idea is you may see a pattern build up that can help you move it on to the Communication Chart or even the Communicative Functions.
Let me know if you have any others.
I will attempt to upload PDF’s after the posts go live. Not gonna lie all this social media content is keeping me on my toes!

As part of the Twitter Takeover last year with Royal College of Speech and Language Therapists Leia made these comments.
“Before I had my talker, I felt frightened. I had Gran but she didn’t understand.”
“I use my talker to tell people when I feel frightened. I like my fun greetings and goodbyes. My weekly schedule helps me to know what is happening.”
I think they sum up why communication is so important. The difference between being properly supported to gain communication skills and been given communication is key. A system is not a magic bullet. For anyone with to become a competent communicator takes time and effort by them and the people supporting their journey. Maybe not everyone will become a fluent communicator. But everyone deserves the opportunity to try. This girl has certainly been worth the effort.

3/3 infographics made after a discussion with groups of parents from Craighalbert Centre. This one covers, perceptions, barriers, funding, meetings, models of disability and the continual fight.

2nd infographic from the parents of Craighalbert. This one on professionals and support.