To those who make our lives difficult … and those who make them better

It has not been a great week. Friday night I finally worked out (with the help of a head-torch and strong stomach) what had been keeping my five-year-old (and therefore the rest of the family) awake for large proportions of the last couple of nights: threadworms. Cue a weekend of swallowing foul-tasting medicine (okay, banana-tasting, but I don’t like bananas so it tasted pretty foul to me), nail-cutting, disinfecting, hoovering, and washing every damn sheet, towel, and pair of pants in the house.

About six loads into the approximately twenty loads of washing that needed doing (why my husband needs to keep six pairs of jeans on the go at the same time is beyond me), the trusty washing machine gave its last gasp and went to Hotpoint heaven. Well, you have to laugh don’t you? Off to the shopping centre for a new washing machine and some more pants.

If we huddle together maybe she won’t wash us? (I did)

The day the new washing machine was delivered, which also happened to be the day the temperature went down to -1 degrees outside and it snowed a blizzard, and the day Benjamin was back home from respite, our central heating thermostat decided the washing machine was having far too much fun up there and headed off to join her. Cue another sleepless night waiting up for the British Gas man and making sure Benjamin was not alternately freezing to death or catching fire due to the slightly rickety electric heater we set up in his room.

Perhaps surprisingly to those who know me, I actually did manage to stay positive through these tribulations, despite a niggling sinus infection and a baby who still decides to feed for five hours a night, because I know they were really nobody’s fault and I could make a plan to resolve them. I always feel better if I have a plan.

What does upset me are the things that I have no control over but somebody else does. The things that just aren’t fair. The things where people just don’t think. The things that make our life – already stressful, exhausting and expensive – just that little bit more difficult. The things that, on a good day, I can shrug off, but on a bad day tip me over the edge.

The neighbour who consistently parks her car overlapping our disabled space, sometimes so close that I can’t even open the boot, let alone open it wide enough to get a wheelchair in.

The parents without blue badges who fill the disabled parking spaces next to my daughter’s nursery, and those who do the same at my son’s even though it has an SN nursery attached so clearly they are going to be needed.

The parents who think it’s okay to leave their towels and clothes ‘bagging’ the only disabled changing cubicle at our local swimming pool while they shower, so I have to wait with a dripping, freezing five-year-old, or leave Benjamin outside the cubicle blocking the gangway, or confront them and risk their (sometimes vitriolic and frankly foul-mouthed) wrath on their return from the shower.

The medical secretaries who repeatedly ignore and refuse to return my worried calls.

The paper-pushers who drip-feed us form after form over week after week, while they mark Benjamin up against their secret criteria to decide whether he is entitled to medical support to enable him even to attend the nursery placement to which he is legally entitled.

The last straw…

But these are minor niggles, really, compared to the worms, ohmygod the worms those that many SN parents (and carers) face. Parents who feel compelled to take horribly drastic measures because they see no other way to get their child the support that he needs. Parents who have to go to court to get the right school, the right house, or the right care for their child. Parents who need physical protection from their own children. Parents who risk losing their homes because they cannot work to pay the mortgage. Parents who aren’t believed that their child has needs because they behave perfectly at school but let all their emotions out at home. Parents who have been allocated respite but have no one to provide it; parents who desperately need respite but have been refused it. Parents who have to fight every step of the way just to ensure their child is healthy, happy and included and their family stays together and has the energy to fight another day. And these parents still put a brave face on it and support each other because that’s what we do.

And they are minor niggles because, for every one of the people who make our lives difficult, there is always at least one who makes it easier.

The washing-machine man who fitted our new machine with a cheery smile and a knowing nod. The boiler-man who came out in the middle of the night and returned the next day with a brand new, all-singing all-dancing internet-enabled thermostat. The friends who volunteer to hold (and jiggle) Caitlin while I get Jackie changed after her swimming lesson, so that I have one less child to keep an eye on. The neighbours who look out for us and invite us over for coffee. The agency carers who come in on their day off and spend time encouraging Caitlin to walk and listening to Jackie chatter as they take care of Benjamin’s needs. The lady at the council who actually listened to our problems, understood, and promised to do something about them. The hospice staff who arranged a photographer to take some family photos for us, and the photographer who refused to charge for them.

New washing machine (and expert washing machine selector)

So we’ve got through this week with our humour (if not our wallets) intact. With a few more grey hairs and bigger bags under the eyes. There is still enough in our lives to smile at and plenty to laugh at. Often it’s not about money and limited resources, it’s just about thoughtfulness, consideration and an inclusive attitude. Just don’t mention the worms.

Acceptance, accessibility and attitude

I am fortunate to have an incredibly understanding, flexible, patient employer. They have allowed me to cut my hours down to almost nil; I am secure in the knowledge that I can increase those hours again when my caring commitments allow; I am kept abreast of developments in the workplace; and I am welcomed with open arms every time I – and one or more of my offspring – deign to make an appearance in the office.

So when I was asked – I’m not sure if it was ironically or strategically – to take part in a committee focusing on gender equality in the work place, I was very happy to contribute. The first test of equality I proposed was that the only way I could make committee meetings was to bring Benjamin with me…

So, we toddled off into work. People held doors open for us and offered to carry the buggy up stairs. I parked Benjamin in his buggy in one corner of the board room. We received just the right amount of cooing to make me feel special but not enough to disrupt the meeting. Everyone politely ignored Benjamin as he snorted, coughed and grunted his way through the hour (fortunately he didn’t cry). I was enabled to contribute to the meeting and to care for my child.

Afterwards I popped in for a quick chat with my line manager. Benjamin threw up banana milk all over her office: she didn’t bat an eyelid and even asked if she could give him a cuddle afterwards.

**

There are three rail companies running on the line between my home and my office. I was unfortunate enough to catch a train home on the least accessible one. I struggled up the high step into the train with the buggy. I parked it in the wheelchair space because – although it’s an ordinary buggy not a wheelchair or an official special-needs buggy – it has been specially adapted for Benjamin by a wonderful engineer called Derek at Wheelchair Services. He (Benjamin, not Derek) is safer and more comfortable in it than on a rail seat or on my lap, and it is the only place I can safely sit him if I need my hands free to tube-feed him.

So, I argued with the guard who insisted that my “buggy” should be folded and moved to a different coach. I blushed in front of the other passengers witnessing this argument but probably not hearing the ins and outs of it and thinking I was just an obstinate mother. And then I stood, wedged against the back of the seat in front, to administer his tube feed, because train-designers clearly do not think that disabled people deserve to sit next to or talk to anyone else while on a train, but position them on their own, with only the luggage rack for company.