Rob was different, very different.

He was autistic, intellectually disabled, had many physical illnesses and issues and was in his 40’s living with his 70 year old mother and down syndrome sister Janet in her 40’s also, when I met them all.

It was the summer of 1997 and I was on my J1 student working visa from Ireland to USA. I found myself looking for lodgings in Montauk, Long Island, New York State and the only decent place available was Betty’s. Betty was 70 years old and a powerful positive energy. She had lived a very colourful life in different parts of the world, went back to finish her Masters in Education after having all 4 children including Rob and Janet with special needs. She loved her children dearly but worked for her mental health and sanity purposes. She needed to have an interest outside her adult special needs children and she worked 5 days a week in a local hardware shop. She took in four Irish student girls every summer and treated them like her own family. She put a wholesome dinner on the table every evening and made sure she always was well stocked up on the American treats.

I didn’t know the other 3 Irish girls. Two were twin sisters as different as chalk and cheese. The other girl and I shared a room but that is about all we had in common. I saw Betty’s as a base, a B&B. After all, I was 20 years of age and going to make lots of money waitressing in the local golf club for the summer so I could support myself in college and of course enjoy myself.

I worked every shift I could get waitressing. I started at 5am to have breakfast for the golfers at 5.30am. I worked lunch shifts. I worked in a pool concession shop in the afternoons. I worked evenings when there was a function to waitress at. I worked weddings and all large events. I was 20 years old and full of energy. I went out partying every single night. Looking back, I was mad! I could party all night and leave the night club at 4am to make sure I was back, changed, dressed, respectable and walk up the road with the crickets singing and the disco music still in my head to make it in time for the breakfast shift.

I didn’t see much of home life in Betty’s but when I did, it was on my day off or between shifts. I would find myself chatting to Rob for ages. He was non-verbal and very poor social skills. He had difficulty feeding himself and was incontinent. He didn’t like to wear clothes but at Betty’s insistence with 4 Irish girls in the house, he had to wear pants! I would tell him all about my nights out, who I met, where we went, what we did and didn’t do. All my thoughts were safe with Rob. He would burst out laughing in places that were very appropriate so I knew he understood everything I said even though he had no language to reply. He loved to listen to me. I would always ask how he was and how his day was going and often was met with moans and groans. We would have a laugh and I would say be ready at 11pm and I’ll take you to the local club tonight. He would break down laughing. Our communication wasn’t forced, it was very equal and felt so free and easy.

The other girls struggled with Rob. Some found him repulsive with his eating habits. Some found his toilet manner disgusting. Some were afraid of his angry outbursts. However, one of the girls constantly patronised him and I ached for him. She would talk down to him like he was a small child. He was a fully grown man in his 40s and I respected him as an equal.

One day we were chilling in the sitting room; Betty, Rob, Janet, one other Irish girl and myself. We were chatting about nothing in particular and then something truly spectacular happened that shook the whole house. We would never be the same again. It came in one word uttered from Rob’s core and he said very clearly ‘BE-LIN-DA’, my name.

Then when he saw the white shock that came over my face, he got a fit of laughing. Then I got angry and gave out to him for saying my name and he should have said ‘mam’ or ‘mom’ or ‘mother’….he laughed harder at my reaction. I found myself apologising to Betty and she smiled. The others in the room went into shock and then over-talked about the crazy unfolding situation. Silence descended again.

I was lifeless at this stage and then off he went just one more time ‘BE-LIN-DA’. Betty left the room and I saw tears in her eyes. I just started to give out to him again for saying my name and not his mothers and she deserved to hear her son say her name after years of caring, minding, loving but no he choose me. I was so stunning.

I was never the same again.

Rob never spoke another word again.

Years later I would find myself working with children with so many abilities and different needs and I think of Rob. I think of how every person no matter how different they are just want to be loved and respected as an equal.

Sometimes I meet children who are non verbal and I always think of Rob and how he spoke my name.

This was such a powerful gift given to me at the time but I was too young to see it as such.

Rob would read my energy. He understood that words were only one form of communication. We talk in so many other ways than just words. I had a deep respect for Rob as a human being and that was it. I could see ‘sameness’ in his eyes. I could see me in him. He may never know the true impact of him uttering those words but somehow I think he knew exactly what he was doing. Rob knew exactly the gift he was giving me to ponder and to accept many years later, to use to help other children through Bella the Butterfly.

Thank you Rob xxx Love & Light xxxx          @bellathebutterflylove     


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