Commenting on this picture, one person said that they couldn’t see why special needs parents were any more ‘super’ than any other parent: we’re all just trying to do our best for our children. I wouldn’t dispute the fact that we all want to do the best we can for our kids, but it got me thinking about the wide gulf of difference between what the parents of ‘typical’ children are required to do to ensure the best care for their children, and what we ‘special needs’ parents have to do.
There is a vast difference between waking up and putting your newborn baby to your breast and sitting up nights to express milk for a child not strong enough to breastfeed, then spending a further one and a half hours trying to feed that milk to a little one who struggles not to get exhausted before they’ve taken the minimum necessary for their welfare; knowing that in another hour you’ll have to start all over again, and in the meantime your other children need to be given breakfast and taken to school.
There’s a big difference, too, between preparing a home-cooked meal for your child and administering nutrition via an NG tube or peg, or liquidise every morsel they ingest.
Being woken periodically by a child who doesn’t sleep well is a world away from routinely being up all through the hours of darkness because your child can’t tell night from day, or whose brain just doesn’t ever switch off, or has a condition which means that someone has to stay awake with them all night, for safety.
How many people who are not members of the medical professions have to routinely manage medical equipment and treatments, day-in-day-out, like many special needs parents have to?
How many of them have to endure the hostile stares and judgemental comments of others when their child goes into meltdown in a public place, whilst trying to manage the situation calmly?
Do they have to fit in numerous medical appointments and therapy sessions on a weekly basis, or juggle the needs of a child frequently in hospital with the needs of their others at home?
All whilst trying to keep their worries and fears in perspective and under their hats? Whilst holding down a job, or studying?
Whilst trying to maintain their relationship with a partner, who may be their rock, but may bring additional problems which also need managing?
Would they even dream of attempting to do all that in make-up and high heels, just because that’s how they roll, and at the end of the day they still need to be themselves?
Me and my fellow special needs parents – yes, we are super-parents – and not because someone waved a magic wand and made it so, or gave us a mask and a cape and a pat on the back, but because we had no choice but to find it within ourselves to shoulder all these extras and carry on as normal.