How Special is, ‘Special’?

Kerry Fender by Kerry Fender Additional Needs

Kerry Fender

Kerry Fender

Down’s Syndrome, my family and me – one mum’s account of family life with an extra chromosome.

He is in the process of toilet training.

He rarely, if ever, needs changing while we are out, but he does need to be taken to the toilet – which presents me with a dilemma.

Are we entitled to use accessible or ‘disabled’ toilets, or not?

It is difficult with the buggy to use the standard cubicles in the ladies toilets, especially if I also need to go.

Although baby-change cubicles are big enough to accommodate the buggy, Freddie is not a baby, and not all have a toilet.

When I do find one that does, I often get dirty looks for having occupied it when my child is obviously neither a baby nor toddler.

I also get dirty looks when using the ‘disabled’ toilet, too – from those who just see a woman with a child in a buggy.

To be honest, I’m not sure which cubicle we belong in generally, in life.

My son has Down’s Syndrome, with associated developmental delay and learning disability.

He has a Statement of Special Educational Need and goes to a dedicated special needs school. His behaviour is sometimes unusually challenging.

On the other hand, he can walk, and talk, and feed himself.

He is gradually learning to do most of the things that typical children do, albeit at a much slower pace.

He doesn’t (touch wood) suffer frequent bouts of ill-health.

He has never (touch wood, again) been admitted to hospital as an in-patient since he was discharged from the NICU six weeks after he was born; nor has he required surgery or other complex medical procedures so far.

We don’t need to use any specialist equipment (other than the buggy).

Parents of ‘typical’ children say things like: ‘I don’t know how you do it, I couldn’t’.

‘Special needs’ parents seem to say: ‘You don’t know you’re born, we have it way worse than you’.

Each community thinks we belong in the other.

Neither really accepts us.

It was even worse with  our elder son (who has Asperger’s) – we were patently not quite ‘typical’, but not atypical enough to qualify for any specialist help or support.

We had to fend for ourselves as best we could in a strange and lonely wilderness.

It is like we have fallen down a crack in the pavement between the two, into some strange nether world that only we inhabit; outcasts with no tribe to call on for help when we meet with monsters.


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