My disabled son and SCOPE

This is a true story about my then young family. My eldest daughter Rita was about eleven years old whilst my three sons Terry, Steven and Robert were seven, five and three. So from about 1982 I was wearing several community hats. Chair of the HHTRA, The Tenants And Residents Association on Harold Hill, Director of PHIG, (A charity I had set up to help families cope with a disabled child), a parent Governor of Rita’s school (Harold Hill Community School) as well as being a new a school governor at Brookside Infants and Junior school.

As PHIG was growing, mostly due to my and Anne’s hard work, we were became increasingly involved with the Spastics Society- later renamed as SCOPE. We had weekly meetings with SCOPE workers. President Reagan’s wife was due to tour SCOPE’s Head Office and we were invited to this auspicious event. Of course we agreed. This was a memorable event with the American secret service, obviously packing guns under their suits, orchestrating everything. Nancy Reagan had wrinkled old parchment skin under a ton of make-up – smiled and asked Anne (my wife) the names of our children. We dutifully replied Terry, Steve and Robert – who did look rather smart in their distinctive shirts. I could read her mind as she looked and couldn’t see obvious signs of Cerebral Palsy. We explained that our eldest son, Terry, had been starved of oxygen at birth, but thankfully he was relatively well compared to the children we were helping. Our community had an incredibly uncaring attitude towards parents parents with very disabled children, which was why we created PHIG. It was easy to see that the event was just another photo opportunity for Mrs Reagan to use in her memoirs.

A little while later, C.a.F. decided to hold a spectacular event of their own to highlight the needs of families with severely disabled children. The venue was in Bath and within the planning of the event I was asked if I would take on two roles. The first was to become a carer (alongside another of our PHIG members) for a very disabled twenty year old quadriplegic man whose spastic spasms were so great that he could do nothing for himself. The second task was, between looking after Charlie, I would act as “the aide de camp” to the Minister, Tony Newton.

I had no reservations whatsoever in dealing with the MP- another shallow Tory I thought.  I did have any number of problems when dealing with Charlie. He was a smashing lad, smiling in a twisted way whilst throwing his arms and legs in spasm Ironically he was more used to dealing with scared “ordinaries” like me than I was used to interacting with someone like him. However, I did learn that weekend right that Charlie was a very bright person. He fully understood prejudice and knew first-hand about people turning aside their eyes and pretending not to see him. He had experienced all frustration of supposedly kind hearted people talking to the person pushing his wheelchair rather than talking to him. After some initial difficulties and I confess to laughing at my mistakes when interpreting what Charlie was trying to communicate in his very guttural voice. By trial and error we talked.

After breakfast the following morning, where I had spoon-fed Charlie and scraped his chin of dribble and dabbed his mouth with the serviette a thousand times, he announced quite openly to all at our table, “what goes in has to come out, would you take me to my room”. Chris, another parent and myself lifted him in his wheelchair up the two flights of stairs and into his room. In the corner sat a commode Charlie asked me to drop his trousers and pants and sit him on his loo. Chris I noticed, was pleased that I had been asked, and between the two of us, we got Chas onto his ‘throne’. Charlie said, with the usual accompanied arms and leg spasms, he was finished. Someone had to wipe his bum and that person was me. I rose to the challenge that weekend and I grew up in a number of ways.

On the Saturday morning there were a number of workshops, and the Minister Tony Newton said he would attend “Coping with a Child’s Death”.

I can’t do justice to the lovely Irish lilt in her voice. Her story was very moving and profound. Her story was based in the prejudice of unmarried women eight years earlier, 1960s when her Michael was born. Her parents threw her out. She scraped the money together to go to Dublin, for the birth. She was scared, alone and unhappy. The birth came with no unusual complications and ten days later she was discharged from hospital to some very dirty lodgings with her new son that the hospital Almoner had found.

Not happy that her son was breast feeding properly she sought advice from a local Doctor who basically refused to deal with her. Her son cried and cried, but could not seem to feed from the breast and within days she was at her wits end. With no family or friends to advise her and the so called heath service – she confessed she was considering smothering her child and cutting her own wrists.

Eventually she got help from a Hospital Doctor who did many tests on young Michael and broke the news that her son had severe brain damage and would never live as a normal boy. Her eyes, glazed over as she stifled a sob at this point, but she swallowed a sip of water and continued.

Young Michael’s little body grew and despite all the negative reactions of most people around she raised her terribly disabled son, as she said, “more with love than food”. Her son was not like any other boy where a Mum could let him explore and interact. Her son was a baby, with the immediate needs of a baby right through the – as she said, “The most wonderful eight years, that have just recently ended”. But just a few weeks ago, Michael was called to the angels, and she just wanted to share with us, the love that such a disabled little boy and the joy such a disabled little boy can bring to a person.

I have not done this memory the justice it deserves, as the Mum had given such a matter of fact talk about her relationship with her son. She described her sleepless years. Years of coping in a hostile world with a child that so many people turned away from when seeing him in his pushchair. We were in the presence of a woman who had more reason to hate the world for her suffering, but in telling of that suffering was trying to help other parents that were worried about their child’s disabilities.

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This blog is probably written backwards as I haven’t mentioned anything about the very early years when my then wife Anne came away from our GP after having some concerns about Terry. At eight months old he’d made no attempts at sitting up or crawling. Great Ormond Street Hospital and a brain scan at their sister organisation at Stanmore in North London eventually diagnosed that Terry had suffered from “oxygen starvation at birth and as a result was now diagnosed as a spastic child”.

We were devastated by that news and like so many parents before and after us we went home to come to terms with that bombshell. As a young couple, it dawned on us that families all over the country had had to face such devastating news and what if anything we could do to help.

In trying to set up our charity called “PHIG (Parent Handicap Information Group) The Charity Commission were helpful but their rules were very prescribed. No charity with similar aims and objectives had to be established within so many miles of the nascent charity, hence we were put in touch with SCOPE and Contact a Family.
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Well that’s all for this blog but I do hope I have stirred some thoughts about how on the face of terrible adversity and sorrow – some families do rise to the situation but how much better it could be if we all hunched down next to a wheelchair and actually communicated with that person who carries such a burden through their life.

Mike

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