My Journey so far with Apraxia/Developmental Dyspraxia

My aim of this blog is to raise awareness of this speech disorder. Tomorrow it’s Apraxia Awareness Day in USA (14/05/20); we don’t appear to be raising awareness of this speech disorder in the UK. I will be posting more blogs to raise awareness over the next few days as May is Apraxia Awareness month.

This is my story:

I have Dyspraxia which impacts on my whole body, the most obvious when you meet me is how it impacts on my speech. If you passed me in the street you wouldn’t see any difference. I nod and smile to people when they let me pass or when they smile as they pass, which people do. 

I was wrongly diagnosed at an early age. That was a ‘fun’ experience as I understood everything but couldn’t shout at them to tell them what I thought. 

My poor early education resulted in me eventually having a diagnosis of PTSD for which I’m still having weekly EEG Neurofeedback. Would you believe that I received no speech and language therapy (SaLT) during my early years education other than private sessions funded by my family. Even the private sessions had little impact on my speech; somehow the focus was wrong. There seems to be a lack of awareness and resources in the UK in relation to apraxia/developmental dyspraxia. From my experience, there is a clear deficit in available appropriate therapy between the USA and UK.  

At the age of eleven I was assessed and acknowledged as intelligent. My family paid for a consultant educational psychologist to work with me from an early age, visiting both home and school. At eleven my receptive language skills were assessed as at least 8 years above my chronological age. I am currently completing a Level 3 qualification in Creative Writing with the aim of progressing on to higher education. This disparity between speech output and assessed intelligence is what leads to a diagnosis of developmental verbal dyspraxia (DVD; UK) or childhood apraxia of speech (CAS;USA). This is a general fact sheet on Verbal Dyspraxia.

My speech is developing through a specialist programme that has been in place for a number of years although I am wary of using it with people I don’t know. I have a realistic goal of developing an increasing framework of words and functional phrases. I still have a US-based SaLT who is an apraxia specialist; I visit her annually. She sets the programme and a trained team delivers it. We regularly video my targeted programme and share a wide range of videos via iCloud and have tele-therapy meetings via Zoom with the SaLT. 

My whole programme is broader than SaLT and encompasses strategies for academic learning, vision and exercises for strength which is important in dyspraxia that impacts on the whole body; it is modified regularly as I make progress.

I have involvement in a small group called Young Adults with Dyspraxia/Apraxia (YADA). This was set up by The Cherub Foundation in America. YADA is a closed group that helps young people to share with others in a similar situation. For the first time, I talked to someone with developmental verbal dyspraxia (CAS) and felt better about myself. This made me feel better especially after my school experiences. 

My goal is to raise awareness of this speech disorder and how you can help on a personal level:

  • If you are reading this, please stop and think how lucky you are to have volitional speech, those of us who have difficulties are no lesser a person. Everyone has difficulties in their life of some sort. 
  • People are often uncomfortable when there is a speech deficit of any type and fill the vacuum with too much talk or ignore. I have experienced this a number of times as a child and it made me feel worthless.
  • Slow down and look at the person, say something and give them to respond because most people will acknowledge verbally or non-verbally in some way and human communication is often non-verbal anyway. Take the time to communicate effectively. 
  • If someone uses a communication aid follow the same approach just take time to include them properly in a conversation even if it’s a group.
  • My message is simple. Stop being uncomfortable or afraid and engage; see the person not their deficit; take the time to see their strengths and not their difficulties; it will enhance both your lives.

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