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.

Reasons to be thankful

My last post was dedicated to my brilliant baby boy. But I know he – we – wouldn’t be where we are today, still standing, still laughing, still together, without the help and support of many, many people.

My parents, and my parents-in-law, have been there at the end of the phone and at the drop of a hat, to care for children, cook meals, build compost heaps (well, a compost heap), do laundry, go shopping, iron shirts, calm tears and give advice (asked or unasked-for!). All with barely word of thanks and, more often than not, with ungrateful criticism. The rest of the family – Benjamin’s aunts, uncles, great-grannies, great aunts, great uncles, cousins of various descriptions, have all been there for us too, and we have never felt alone.

Our friends, near and far, continue to look out for us, call us, drag us out for a drink, care for us, laugh with us, cry with us. You know who you are and we hope you know how grateful we are.

We have been incredibly lucky to have been assigned a brilliant team of health professionals right from the very start. From our GP, health visitor and practice nurses, through the obstetrician, midwives and nursery nurses at the Edinburgh Royal Infirmary, to the community team of paediatrician, physio, OT, speech and language, plus wheelchair services, eye doctors, neurologists, counsellors, geneticists and more, we really have received exceptional support and it seems nothing is too much trouble for Benjamin. Add to this the increasing involvement of a team of dedicated and proactive visiting teachers, and I really can’t fault the care we have received so far.

As a stay-at-home mum in a new town with no experience of special needs of any kind, support groups, both on- and off-line, have been invaluable to me and to Benjamin for finding information, talking to those with similar experiences, and making new friends. I am particularly grateful to my local special needs parents’ group, and SWAN (Syndromes Without a Name), as well as the helplines at Kindred and Contact a Family.

The two people who have given, and given up, the most are of course my ever-patient husband and ever-cheery daughter. Every minute of every day I have reason to be grateful to them; I simply couldn’t do this without them.

In fact, with all this help, support and encouragement it’s easy to fall into that mothers’ trap of feeling guilty. In this case, guilty that I have it so easy, that I haven’t had to fight for recognition of Benjamin’s condition, or for treatment, care or benefits. We haven’t spent weeks on a hospital ward. We get some sleep most nights. We have food (and wine) in the fridge, and gas in the boiler. Living with a special needs child has not yet led us – as it has many – to depression or divorce.

WMAS_Gentiana_nivalis1_AWortley_2008

A dear friend of mine learned recently that she has perhaps six months left before she loses her battle with cancer. Six months to show her partner how much she loves him. Six months to remember the good times with her friends and to say thank you to her family. Six paltry months to give her two-year-old daughter enough memories to last a lifetime.

So I’ll try not to waste any more precious moments feeling guilty, wallowing in the challenges life has thrown at us, or wondering at how fortunate I am. I cherish each person who, in any capacity, shares any step of this journey with us. Thank you.