Special Needs Parenting: Elephants in the Room

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.

But in my case it is true. I am an older mother; I was already in my forties when Freddie was born. Which leaves me with an elephant in the room.

No, two elephants in fact.

The first elephant is one that a few (rude) people do occasionally point out – the ‘what-will-happen-to-him-when-you’re-gone elephant.

The second is one that no one ever mentions, even though it is a great, grey and wrinkled matriarch that sooner or later casts its shadow across every woman. It is the elephant of change.

The Change.

Yes, I know it is an issue for all ladies, but, as I am discovering, it is a particularly troublesome one for mothers of children with special needs.

Take my own case. Freddie is six, but developmentally he is still a toddler. Developmental Delay does not just mean that a child will hit the milestones later, but also that each stage of the process happens much more slowly.

Freddie gets frustrated for pretty much the same reasons as any two-to-three year old does, and his behaviour is challenging because of that.

But he’s been going through the ‘terrible twos’ for three years now, after effectively being a baby for three-and-a-half.

Any parent will tell you that the baby and toddler stage can be physically and mentally draining.

We special needs parents have added emotional stressors too. We have been going through this most demanding phase of childhood for an extended period, at a time when my resources are at their lowest ever ebb.

In a few short months I have gone from being someone who thought nothing of walking for a brisk hour to get to town, and then trotting up six flights of stairs to her tutor’s office, to being a woman who barely has the energy for a ten-minute stroll to the corner shop.

At night I am restless and burning, and by the time Freddie wakes me up I am even more exhausted than when I went to bed.

He can be uncooperative when it comes to the necessary routines of the day; playing or reading is far more interesting than going to the toilet or having a wash.

Often the only way to get him to the bathroom is to carry him there, squirming in protest. When I do, every joint below my shoulders nags me painfully. During the day I am so physically shattered that I could sleep on a washing line.

My brain is so tired that the thought of planning a meal that Freddie can manage, and everyone else is prepared to eat, seems like an insurmountable challenge.

I have lost count of the times I have served up beans on toast recently.

But even warming a can of Heinz and singeing some bread becomes a major task when undertaken alongside the supervision of Freddie – prompting him to think about whether he needs the toilet, then taking him, wiping his nose, preventing him from eating the tissue, or nibbling the corners off books, and retrieving him from various places where he gets ‘stuck’ (purely for dramatic effect).

My formerly pre-menstrual headaches now strike randomly, bringing with them nausea and a mental stiffness so acute that I struggle to recall even commonplace words.

I cannot plan around them anymore, because they no longer conform to their accustomed pattern.

The only painkillers that worked are now forbidden to me because they clash with the medication I take for the horrendous mood swings that almost saw me single again.

Poor Freddie must have been so confused by my inconsistency; it is no wonder his behaviour deteriorated. I think it is time to start taking the advice that all special needs parents give to one another, but ignore themselves: take care of yourself.

So, if you’ll excuse me, I’m off to do some research into the menopause.

I need to find ways to stay as well as possible for as long as possible – so that I can put off tackling that first elephant for a little while yet.


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