I will start off by introducing myself. My name is Mikey, I am 17 years old and I am the founder of Mikey’s Wish, a charitable cause that raises funds to support children, here in the UK, who have additional needs in school. Mikey’s Wish also raises some much needed awareness of Verbal Dyspraxia (what we call Apraxia here in the UK).
I was diagnosed with severe verbal dyspraxia at a very young age, when I was just 2 and a half years old. It was a huge shock to my mum as, like anyone else who has never had verbal dyspraxia touch their lives, she had never heard of it and 14 and a half years ago there was even less information available than there is now. My family accepted my diagnosis, after what my mum calls her mourning period, and I immediately started intensive speech therapy. Progress was extremely slow, I showed very little improvement. I spoke only using vowel sounds and missed all beginning and end sounds off my words. It took me a year and a half of working on the ‘p’ sound before I could say it on the start of a word and I was in speech therapy for many, many years.
When I started school it quickly became obvious that I struggled with reading and writing and it wasn’t long before I fell behind my peers. How was I expected to read and write when I still couldn’t talk? My mum and the school worked together to get me a Statement of Educational Needs which gave the school extra funding so that they could support me with my learning. I was 8 years old before my speech began to become intelligible to people outside of my family. Luckily it didn’t affect my friendships, my friends were great and just seemed to understand me and they just accepted me.
My family and I continued to work on my speech but I became anxious at the thought of speaking in front of people I didn’t know. My mum says that I became selectively mute. I would only speak to familiar people. It was hard growing up with a diagnosis that most people have never heard of, trying to explain to people why you couldn’t speak properly. When I was 13 years old I wrote a poem called ‘I am a Boy’, it was about how I felt growing up with verbal dyspraxia:-
I am the boy who has so much to say,
I am the boy who says it my way.
Not always proper, not always right,
With my brain I must put up a fight.
The words don’t come easy, they hide away,
When I find them some sounds go astray.
It’s not ‘cos I’m stupid. it’s ‘cos I am me,
I am the boy with verbal dyspraxia, you see.
I have one desire, I have one wish,
And that is that there was more awareness of this.
It was this poem that set me on the road to raise awareness of verbal dyspraxia/apraxia. Mikey’s wish came from this poem. It made me realise just how lonely my family and I felt living with this diagnosis and if we felt lonely then others must too. I set up Mikey’s Wish Facebook page which has steadily grown over the last 3 years. I share my life on the page to help others that share my diagnosis realise that they are not alone and to help parents realise just what the future could hold for their children. (Something that I know my mum wishes she had when I was first diagnosed). Families contact me and ask me questions which I am always happy to try and answer.
I also raise funds and donate to the Special Educational Needs department at my old primary school, to support children with additional needs. I had great support throughout my school life and I just want to give something back. I sell Mikey’s Wish merchandise, hold pub quizzes, non school uniform days, cake sales and am in the process of organising my 4th Annual Family Fun Day and Charity Football Match. Every child deserves an education and with school funding being like it is at the moment, every penny makes a difference.
It is great that Mikey’s Wish is helping others but it is also helping me. It has helped me realise just how many people share my diagnosis. Its helped me see that my family are not alone on this journey and raising awareness of verbal dyspraxia/apraxia has given my life a purpose. Living with verbal dyspraxia has been difficult at times but it has also opened up so many amazing opportunities. My work has been recognised by the Prime Minister when she awarded me a Points of Light Award and I got invited to 10 Downing Street for a reception and to watch the Christmas tree lights be switched on. I was also awarded the Stephen Sutton Inspirational Award at the Pride of Birmingham Awards which is all great to help raise the profile of verbal dyspraxia/apraxia.
I had to fight so hard for my voice, it may only be one quiet voice but I am determined to make it heard for all those who are still fighting to find their voice.
To all those who share my diagnosis I just want to say, if ever you are finding things a little bit difficult just remember “you’re too cool to follow the neurotypical rule” and you are not alone.
You can follow Mikey’s Wish on Facebook!