As a person who has multiple co-occurring conditions, I require support staff with me almost all the time (except at work).

Two of my disabilities mean the support I require is specialised and the person supporting me needs to be understanding and patient with me.  That’s why having the right support person is crucial, if that person isn’t listening to me or is not in tune with my non-verbal responses, a meltdown will most definitely be the result as they have not been taking notice of me telling them I am becoming overwhelmed and I need “out”.  Or if they are not allowing me to process or are not willing to repeat something that is important for me to know, they can create a very dangerous situation for me as I could for example, wheel out into the middle of the road, because I didn’t hear or see a car coming.

I have had a couple of Support people that have been those unfortunate ones.  One wouldn’t listen to me to the point I would raise my voice and then wondered why I shut down and went non-speaking. When they were spoken to by the Team Leader of my residential house they would claim I was rude, and that I was yelling at them: the Team Leader knows my cues and knew the only way I would have ended up in that state. We eventually had a meeting with the Regional Operations Manager who has had a word with this person and things are a lot better.

Other reasons the right Support person is crucial, include:

Personal care - if you don’t feel comfortable with the person, then you wouldn’t want them taking care of your dignity.

Communication -  when it comes to communication the person who is your communication partner needs to be trustworthy and someone who clicks with you.  If I don’t feel comfortable with someone, I will not be able to communicate through them as I won’t be able to feel at ease and trust they won’t misinterpret what I say.

How I know you and I are going to gel:

I love a laugh, tell me a good joke, and let rip with a fart, either way, I will end up laughing.

Share in my interests, if you’re into cats (or dogs), space, and planes or are happy talking medical terms for hours, you’re in.

Treat me like you would a friend. If you’re nervous around me or get all panicky when I go non-speaking or have a meltdown, you and I are not going to gel, and I won’t feel comfortable working with you.

In a nutshell, if you can walk up to me and act like you have known me for a lifetime, you are in with a grin!

About the author: 

I am a 42-year-old man, who is born and raised in New Zealand. I have PHACES Syndrome which is very rare (there are only around 5 of us in NZ and I am the oldest we know of here), this affects my brain, senses, muscles, nervous system, vascular system, as well as the skeleton and connective tissue.

I have a Certificate in Social Services (Biculturalism), which helps me in my advocacy work, but I would love to work with children with special education needs. I write poetry, short stories and have written a song. I also paint and play a strong part in my Church community. I love knitting and music, anything related to space and cats, and my favourite show is Star Trek.