In my blog introduction, I explain that I have Global Dyspraxia that impacts on my whole body, the most obvious when you meet me is its impact on my speech. This led to me being 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.
Luckily I have a tenacious family and a grandmother with numerous degrees in education including an M.Ed in assessment and learning. I was privately assessed for a text-based voice-output communication aid. Within two minutes I said, ‘I’m hungry can we go home’; I was ten years old. Subsequently, we won the legal tribunal we took out against the local education authority, for failure to meet my needs. It was greatly helped by us employing for many years a consultant educational psychologist who was fantastic. She observed me in schools and carried out assessments on verbal reasoning etc. At the age of eleven I was acknowledged as intelligent. That 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).
My poor early education resulted in me 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. Since I was eleven, I have had specialist SaLT in America and a fully-funded specialist home education programme. I have risen quickly through all levels of school education and intend to go to university in the next few years. My academic progress demonstrated the level of untapped ability and knowledge.
My speech is developing gradually through a specialist programme although I am wary of using it with people I don’t know. I have a realistic goal of having an increasing foundation of words and functional phrases, that I can use. I still have a US-based SaLT who I visit annually; she sets the programme and a trained team who deliver it. We regularly video my targeted programme and share them via iCloud and have Zoom meetings with the SaLT.
My whole programme is broader than SaLT and encompasses strategies for learning, vision and exercises for strength which is important in dyspraxia; it is modified as I make progress. My grandmother has a balance between her consultancy and managing the programme like a military operation. I know her skills are greatly valued by others and I try not to take her for granted!
I know I am no longer that damaged little boy but inside he is still part of me; I struggle at times but then don’t we all. The purpose of this blog is to raise awareness of the general tendency to equate speech difficulties or use of communication aids with a cognitive deficit. There’s a ‘does he take sugar mentality’ so people tend not to talk to you.
- People are often uncomfortable when there is a speech deficit of any type and fill the vacuum with too much talk or ignore.
- Slow down and look at the person and say something and wait for them to respond because most people will acknowledge verbally or physically in some way and human communication is often non-verbal anyway. Take the time to communicate.
- If someone uses a communication aid use the same approach just include them in a conversation even if it’s a group.
In my team when we have a debate, we all use iPads and what a leveller that is. I interview all potential team members which current team members love sitting in on. Each candidate is given an iPad with a QWERTY key board voice output app. The increase in anxiety is tangible. All candidates have good psychology degrees with other experience. One candidate told me how she was planning to work her way through all ‘conditions’ then apparently was going to be a research fellow and cure the world. I am usually polite but always measured in my response. She was left in no uncertainty as to why I wouldn’t employ her.
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.
My message is simple. Stop being uncomfortable or afraid and actually look at and see the person; not their deficit.
My next blogs will spotlight individuals who are braver than me in taking action to raise awareness.