Thursday, 16 April 2009

My Autistic Son - Part 7 - problems with authorities

Colm really enjoys riding, and he's pretty good at it. He has lessons once a week and is to appear at a horse show in the summer. He first started riding in 1996, when he was attending a "special" school in Somerset.

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To read the earlier parts of this story, click here. For part 8 click here.

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I had spent 6 months researching the best place to live in England which would combine a decent income with good education prospects for Colm, good schools for his 2 little sisters and good facilities for pensioners (my father decided that he would like to join us in England after we had got established there). So in December 1994, we moved to a little rural town in Somerset in southwest England. I bought a flat for my father and he relocated in 1995.

Colm enjoyed his new environment. It was safe, very little traffic, very friendly locals. He was immediatley accepted into the local community. Additionally, Colm had his grandfather nearby. He used to spend a lot of time there where they would both watch war movies and James Bond. They enjoyed each other's company. Colm was happy.

I introduced Colm to the excellent local doctors' practice and the county education authority and within a week he had been enrolled in a "special" school (not called a "special" school any more) and a series of tests to assess his mental and physical requirements had been organised.

My wife took no part in organising care for Colm and subsequently took hardly any interest in him. I don't know why this happened, but to this day she takes almost no interest in her son.

After a few days, Colm decided that he liked his school and he was very happy there . The school told me about an opportunity (nearby) to teach Colm to ride. He tried it and loved it, and, as is obvious from the picture above, still rides.

A few months later, the health professionals and mental health professionals delivered their report on Colm. He -
  • was not suffering from glycogen storage disease - so it had only taken 14 years to find that out! However, no alternative diagnosis was offered. Good news - no further tests for storage diseases!
  • had Asperger's Syndrome - never mentioned before, and a controversial diagnosis at the time. Even today, not all mental health profesionals accept that such a condition exists, and the vast majority of those who do, believed that it couldn't occur in a subject who also had learning difficulties...
  • was extremely healthy - good news!
  • had learning difficulties - ok, so I had been told that before.
Colm's social worker was a very dedicated man. As well as checking that Colm's needs were being fully met, he assisted me with getting Colm all the financial help to which he was entitled and told me what help was available for me as Colm's primary carer.

One day he asked me if I would like some respite care. He didn't have to ask twice! He put me in touch with a lady who had recently been approved to provided respite care for disabled people. Colm and I visited her a few times, including a weekend stay. She lived on a farm with lots of space and where there were horses (she and her husband were well off and were really only playing at farming). Colm, after feeling insecure initially, warmed to her and loved the horses. The lady had a son, younger than Colm, whom we hadn't seen because he went to a posh boarding school. Everything seemed fine, so I organised a family holiday - 17 days in Nice in the south of France. I explained what was happening to Colm & he was ok about it, so off we went for a very enjoyable holiday.

On our return, I was given a message to contact Colm's social worker urgently. "Nothing to worry about" was also part of the message. I eventually managed to get in touch with him by phone (there weren't many mobile phones at that time) and he told me he'd bring Colm home straight away. After he arrived with a very tired-looking Colm, he told me what had happened. A couple of days after Colm went into respite care, the lady's son had come home from school and had started annoying Colm, taunting and teasing him. His mother seemed to be unable to control this. Colm, frightened and not understanding what was going on, went to the lady for security. Apparently he hugged and kissed her. She interpreted this as a sexual advance. This interpretation was absolute rubbish - Colm had not exhibited any sexual awakening at that time - and still hasn't! Nevertheless, somehow she persuaded her doctor that this had happened and since Colm could not be returned home (although he could have gone to his grandfather's), he prescribed a knock-out dose of tranquillizers for him. Hence the tired-looking Colm now at home - he had been spaced out for nearly 2 weeks! For unknown reasons, neither the lady nor the doctor contacted Colm's social worker or his own doctor (whose number had been given to the lady). The social worker only found out about the situation when he paid a visit there to check that everything was ok. He should really have checked everything out earlier than he did (we were due home 2 days later) but like me, he had no reason to suppose that anything would be wrong.

This traunatic episode had ramifications for Colm which are still evident to this day. He is very mistrusting of strangers and takes longer to accept women into his circle of "safe" people than men. It affected me too - Colm has never had respite care since.


Anonymous said...

Hi Robert,

That is a very sad outcome with the respite care which must have had ramifications for you also- ie not being able to trust respite care for your son again. What is most frustrating is that you took so much time to make sure everything would be OK for Colm and ensured he was as comfortable as possible with it.

I'd imagine the vetting process back then is not as stringent as it is now. It sounds very much like the woman was not just playing at being farmer but a carer too.

All the best


Gary said...

This is a very interesting story Robert and this is why i am wary of respite care for my Alice! Social Services have tried to push it onto me! and i have always said one step at a time for her, i have had a carer at my house tonight while i went out, shes a young girl nineteen i think, seems very nice but you just dont know! what i do know is that when she left Alice had wet herself which sometimes happens when she's traumatised! we have to put trust in these people so we can get a break but it can have the adverse affect and make the whole situation worse.

Robert said...

Hi Nechtan & Gary - This woman obviously had some issues which were not immediately apparent. But no matter how much we try to shield our children and dear ones from harm, sometimes it won't work. I don't need respite care any more, but if I did, I would give it another go.

Nota Bene said...

I think your story says it all, so I shalln't comment, but glad to see he likes horses and he rides well...good luck with the horse show

Stephany said...

My daughter always has had an affinity with horses. Sadly, we need respite and because of situations like your experience many of us never do find it.

Adding the drug is just unbelievable, that's horrible to say the least. My daughter has been non verbal since some hospital trauma. If she can be around horses or pet one, you can see her relax and have some peace. (she's now 21).(and psych meds did great harm)

Robert said...

NB - He has appeared at horse shows before, but the last time was several years ago; so he is very excited about going to this one.

Stephany - there's something about horses and people. as you may well be aware, horses are used for therapy for several psycological disorders.

My son has never been on psych meds (except as in the post) and I would need extremely powerful arguments for taking them before I would agree to him having them.

Anonymous said...

How terrible that must have been for you and especially for Colm. I am not surprised he finds it hard to trust female adults. A terrible shame in a young man's life.

you tell your story so well by the way.

CJ xx

Robert said...

CJ - Thanks for your comment. I WAS very upset about the respite care debacle and the inability of officialdom to make timely decisions, but of course, I got over it all. It was much, much worse for Colm, the helpless innocent... I hope that things go easier for you.