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Overcoming life’s hurdles with Nicky

Nicky Fairbairn: his parents fought for his education.

My son Nicky, who is 15 years old, has CdLS and I think Reaching Out readers might be interested in some of our experiences. I would certainly be interested to read about other CdLS children out there who are in Nicky’s range of severity.

Nicky is doubly incontinent, does not talk, cannot wash or dress himself and has no sense of danger. He does use a few Makaton signs and used to recognise some Moon.

Medically, Nicky has a very narrow oesophagus, abducted hips and deformed feet. He is also registered partially sighted has asthma and gastro problems.

Nicky didn’t walk until he was six years old and to this day doesn’t walk well. He also has severe learning disabilities, hates unfamiliar places and absolutely hates change of any kind.

This became a particular issue when Nicky became too old for his primary school, where he received Multi Sensory Impairment (MSI) education. He had an intervenor there for four-and-a-half years and she was brilliant for him. He was on four-word signs, starting to make choices and beginning to understand taking turns – most important of all, he was gaining confidence.

I did not believe that either of the available secondary schools was suitable, so wrote to the Local Education Authority who arranged for MSI at one of them. However, the move led to great regression, both in Nicky’s school work and his behaviour at home and school.

Trauma

Apart from the integration difficulties and the inevitable trauma brought about by the changes, there was little routine or continuity in the classroom, poor resources, horrendous noise levels and poor preparation.

Eventually, my son started to attack.

Nothing improved, so I was left with only one alternative, although it wasn’t what was best for my son – I took him out of the school to educate him myself for several months. We took the LEA to a tribunal and won our case.

Nicky is now at another school and he is happy there, but he has lost many of the skills he learnt at primary school.

We like to think we do what is best for Nicky and as life goes on there are new hurdles to cross. We do find it is getting harder as he gets older, but that’s all part of the package isn’t it?

It is more of a drain and emotionally upsetting as each year passes and again comes the realisation that Nicky isn’t the ‘normal’ little boy I so wanted.

Still, we love him to bits and his sisters adore him. He is our little treasure.

Dee Fairbairn
Thorplands, Northants