As part of cerebral palsy awareness month, Barry writes about the journey he has taken in school and beyond to develop his communication skills.

Who I am and how I am writing this

Hello, my name is Barry Smith, and I am 44 years old. I have cerebral palsy, which is a physical disability. I am in a power wheelchair, and I use a Lightwriter which I will be going to talk about later in this story.

Where I am going to start this story from

Like that song in Sound of Music let’s start from the very beginning, which is the best place to start.

When I were about two years old I met my first Speech Therapist down to I didn’t know how to speak by myself, and when I did no one could understand what I was trying to say to them. So the very first thing she tries to show me to do was how to sign by using my hands, which was down to me having cerebral palsy.

When the Physiotherapist came to see me in my house, one of the very first things she did was teach me how to sit up by myself and how to fall over without hurting myself. She showed my mum and dad what to do with me, as well as bringing a few things what can help me, like a high feeding chair, which supports me to sit in the right way, so people could feed me. Then the physio teach me not put my head back when I was eating.

My family all loved me for who I was and my mum and dad took me out to see all the family.

When the Speech Therapist came back

About a week later, when she came back to work with me again, she asked my Mum and Dad if they could put me in my high feed chair, which had a small table over it. After they got me in it, the Speech Therapist went into a handbag and started to tell us, “I have got a big Bliss Board which has a few signs on it and the word at the top of each one. I am going to try with Barry – if he points with his index finger to the sign and people could read the word on top.”

When she did this, I pick this up like a duck to water. A few weeks later, she came back to check how I am getting on with using this. After she saw how well I was doing with using this, the Speech Therapist could not believe how well I was doing with this, when using this in a little time.

As soon she shows me a little more, she told my Mum and Dad, “I am trying to instruct a young girl around the same age as Barry. When I have seen how well your son is doing, if you both don’t mind, I would like to take Barry to meet her to show her how good he is when he is using his Bliss Board, in the hope she might herself, if he can do it, I can try it.” My Mum and Dad did not even need to think about it because they were so happy I was able to communicate with them, so they told her yes.

Going to meet her

About a week later my Speech Therapist pick me and my Mum up in her car and she took us to the little girl at a playground, where we were meeting. When the three of us went into the hall there were two feeding chairs, which looked like my feed chair at home. As soon we met the girl and the staff member who was helping her, they told us one of the feeding chairs was for me to sit in, and one for her too. So, my Mum put me into the feeding chair, and the person who was supporting her put her on one side of me, we both had the same table over us. As soon we were sitting nicely our Speech Therapist came over and gave us both our Bliss Boards and lay them on both tables, then she stood back and watch what happened with us.

The very first thing I did were to make sure she was watching me, when I knew she was watching what I was doing, the next thing I did were point to a Bliss symbol with my index finger, and the Speech Therapist read it out what I was saying to her. Then I took the girl by the hand to show her she can do the same thing just like me. I used the Bliss Board until my last year of school and liked using it. Now looking back on it people needed to stand over you to see what I was pointing to isn’t good, and as well if the person isn’t able to read they won’t have any idea what you were saying to them.

Getting my Lightwriter

In my last year of high school, I got an SL30 Lightwriter. Because I were starting College the College told me I will need a voice output communication aide if I wanted to do a course at the college. I was going to college one day a week on a school link. Apart from my college day I wasn’t with people who use Communication aids.

When I had just used the Lightwriter for a few days, I remember my class had a class on shopping skills, I remember when I went into the class, my teacher told us half of the class was going to a shopping center and half was going the next week. I was going to the shopping center. The teacher asked everyone before we go on the school bus to take us to the shopping center, we must go to class first because the teacher had things for us to do when we are out shopping. I remember my teacher asked me to get some coffee for the class then she hands me some money to buy it. I asked her who is going to help me to do this. The teacher told me, now you have got your Lightwriter you can ask someone who works in the shop if can they support you in the shop to get you what you need to buy.

So, after I got dropped off at the shopping center, the teacher told all of us we will meet in a Coffee shop after each person from our class group did what the teacher asked them to do. I remember feeling all grown up by this point because this was the first time I were shopping by myself. I had mixed feelings about doing this – I was very happy to do this by myself and as well I was very worried too.

As soon as I got to ASDA I were very worried if I ask for support in the shop they might tell me they won’t help me. But then because I had a speech output voice I also couldn’t wait to ask to see what would happen. When I went up to the help desk, I type into my Lightwriter what my teacher told me to put into it, when the lady who worked in the shop asked me “how could she help me,” I play what I type in back to her.

The lady told me she will get someone to help me with my shopping, and I felt so happy. When I returned to meet my teacher, I thanked her for telling me to do this.

Leaving school

After I left school I got a Speech Therapist from Ayrshire where I came from. The very first thing she did was take the Lightwriter and the things Glasgow give me on a loan, she took it back to give to them. Then the lady gives me the same thing back which was Ayrshire, she told me this is on a long-term loan now. Since that time I move onto Sl35 in 1998 which was a new Lightwriter that has a deep Keyboard and can predict the words what it thinks I want to type into it. I used this for ten years then I got Sl40 Lightwriter. Then I move onto the SL50. Before I go, I would like to make people aware of a communication aid isn’t just for Christmas, it is for people’s life too.

For cerebral palsy awareness month, Adam Baird writes about how volunteering at his local radio station has allowed him to develop his skills as a radio DJ as well as boosting his confidence.

“My name is Adam Baird and my passion is music and sports. When I saw a poster advertising volunteering opportunities at the local Hospital Radio station when I was 18, I went along to see if there was anything I could do for them. I spoke to them about my idea to have a show every Saturday with music mixed with sports news such as the half time and full time football scores.

“The Station Manager liked the idea and surprised me by saying I could do a weekly show every Saturday after some training!  I enjoy combining my favourite interests in a two hour show and have managed to do at least 40 shows each year for the past 21 years. I enjoy it just as much today as I did at the beginning.

“The radio station has now moved from Hospital Radio to an online station available for anyone to listen to. This means I don’t need to be so careful about what I am playing. On Hospital Radio, I had a list of songs that I thought might not be appropriate for my audience. Songs such as ‘I just died in your arms tonight’, ‘The first cut is the deepest’, ‘Beds are burning’ and ‘Achy Breaking Heart’ are good examples of songs that were on my blacklist!

“I had no idea it would be such a long term and rewarding experience for me when I volunteered. It has given me confidence and something for me to look forward to every week. I am so pleased that I had the courage to volunteer all those years ago. Hopefully  this article will encourage others to consider volunteering for something that becomes a big part of their life.”

Ann McIntyre’s son, Ewen, is 61 and has athetoid cerebral palsy. He lives at Capability Scotland’s Upper Springlands centre in Perth.

Ewen and Ann have had a long association with Cerebral Palsy Scotland, and with Dr. Karel and Mrs. Berta Bobath, the originators of the Bobath concept of therapy we practise at the centre. Ewen was first treated by Berta Bobath as a baby in the 1960s in London.

Below, Ann writes about a few of her memories of the Bobaths, and of how important this therapy has been for Ewen throughout his life.

“Our family’s first meeting was in August 1962 with Dr. and Mrs. Bobath in London when our son, Ewen had been diagnosed with cerebral palsy when he was just one year old.

“The following summer Ewen began benefitting from an annual series of treatments with Mrs. Bobath herself at their centre in London during 1963-1980, which coincided with our annual visits to the UK. At that time we lived in California, but in 1989 the three of us returned to live in our native Scotland so that Ewen could come to live at Capability Scotland’s Upper Springland centre.

“I remember another contact with the creative and delightfully outgoing Bobaths that was in approximately 1978.

“Mrs. Bobath was invited to lecture in Los Angeles on her unique method of treatment for people with cerebral palsy, so we were fortunate to have the charming couple stay over a weekend in our California home. Indeed, our son Ewen was on stage at the lecture hall with Mrs. Bobath for a short part of that important lecture, so she could demonstrate her treatment approach!

“Ewen has worked regularly with the therapists at Cerebral Palsy Scotland and we are very grateful that the charity is such a valuable and appreciated aid to people who have cerebral palsy. What an important gift this is.”

Rebecca Nicholson is the founder of Naked Brains – a consultancy that provides training to revolutionise how we perceive and deliver person-centred care. Naked Brains also offers other services too, including independent consultancy and advocacy. Here she explains how her own experiences have informed her career journey and work today.

 

I’m Rebecca I’ve got a story to tell.

A few years ago my life truly felt like

a living hell.

 

I was born with cerebral palsy. The education system made me believe that it may as well have been satan’s spell.

“You are a difficult child”.

“You aren’t very bright”.

“Your parents are making too much of you’re academic potential”, “you won’t amount to very much”.

Teachers at school are supposed to look after you..

instead they frighten the living daylights out of you…

leaving scars that take years to heal.

The words they say stick like glue believing what they say is the sum total of you.

I’m here to tell you that this simply not true.

You are enough.

You deserve choice and control.

You deserve to feel heard and empowered to live a life you love..

 

Naked Brains is here to help you.

Never lose hope. I’m here until you reach brighter days…

 

How I can help?

My Bespoke training programme revolutionises how we perceive and deliver person-centred care. As somebody who has a physical disability and uses a power wheelchair, I use a unique blend of personal experience, empathy and humour.

I discuss what values underpin person-centred practice illustrated through the stories straight from my heart (some may say from the horse’s mouth). You’ll laugh, cry and perhaps ponder concepts you may not have considered before.

Challenging your thoughts and beliefs about what it really means to care.

My approach is never to engage in a culture of blame but instead encourage people to be open to challenge their own misconceptions. I encourage self reflection in a way that promotes compassion and kindness towards oneself. This is when we see the ripples of change as we put humanity back into care. Our practice transforms and changes the world of the people we support.

Independent consultancy/  advocacy.

Recruitment, support, and advice.

 

Be part of the “clean thinking” revolution.

Rebecca Nicholson – bec.nakedbrains@gmail.com

In this blog, Barry talks about his decision to start accessing Self Directed Support (SDS) and how it has helped him live independently.

My name is Barry Smith, and I am 43 years old, I have a physical disability which is cerebral palsy. Because I have this, I use a power chair as well as a Lightwriter what let people understand what I am saying to them.

When I am not able to do something for myself, I try to think of a different way to do it. Like I find it hard to type on my computer with my fingers – because of this I have a big keyboard with an overlay over it, so I don’t hit the wrong letters, then I use my big toe to type. Now I am going to tell you what I use for my mouse – a joy stick.

Before getting Self Directed Support

In 2006 I got my own house. Up to 2016 I used a support office that I liked at the time, down to being new to getting support in my house. But one thing I didn’t like at the support office was that they could send anyone – that upset me because the person might not know how to speak to someone who uses a communication aid.

Starting Self Directed Support

In 2016 I asked if I could go down the road to get a Personal Assistant (PA) to work for me. How do they help me to get what I need for life support? Just like if I need a hand to make a phone call to fix something in my house, I don’t have to worry about if the person can understand me because I have my own PAs who work for me.

By using my own PAs, for me they are my hands – I am saying this down to they do things that I can’t do for myself or am not able to do for myself.

In my eyes when anyone need support care setup they should be told about SDS because it is people’s right to know all the right support information and asked what road they want to go down.

During lockdown

In March 2020 you all know we all got told to stay at home, but I couldn’t let my PAs stay off work because they are my hands, doing things that I can’t do for myself. But I am there to ask them to support me with things I am not able to do for myself, like making me something to eat and feeding me with it. And do my housework for me as well as getting me ready as well as talking to me because I don’t go out. Because of it one of my PAs put out a tent for me at my back door which gave me a bit of head space, because they know I couldn’t go out, by doing this I stop wanting to go out.

My support with SDS now

Now I start going out a little bit more, but I try to stay away from catching Covid 19.

I would personally say to anyone who is thinking getting support, go down the SDS because you can teach your PA what you need and tell them what your outlook in life is.

Before I end my little talk I would like to make people aware you can use a communication aid when they are on SDS.