This post was written for the #SEND30daychallenge, day 2: ‘Ten things you don’t know about…’ I’ve changed it to ‘Ten things you may not know about…’ because I’m sure some of my readers – especially those who are SEN parent themselves – will know every one of them! What would you add?
- We are brave. This might be different for everyone, but I hate making phone calls – in fact, unless it’s to my mum, the thought of phoning anyone terrifies me. But that’s a fear I face head-on every day: scheduling therapy sessions, rescheduling outpatient appointments, ordering prescriptions, organising respite, chasing transport providers, … Not to mention that we face life-and-death decisions head on without flinching (at least until after its all over).
- We are warriors (or at least terriers). We will stop at nothing to get our children what they need. Healthcare, education, support, a diagnosis, a pair of boots that fit, a medication that works, toilets they can use, playschemes they can access. We will keep on fighting, bruised though we are, because the fights never end. And because we’ve got in the habit, we are often found fighting other people’s battles as well. If you’ve got a battle needs fighting, ask a special needs mum.
- We live in a state of perpetual organised chaos (or should that be chaotic organisation?). Yes, I have a row of files labelled ‘medical,’ ‘education,’ ‘direct payments,’ ‘charities,’ ‘equipment,’ etc., but I also have a pile of papers several feet high waiting to be filed in them. Yes, I have a diary, and a calendar, and a to-do list on my phone, and a paper to-do list, and a list in my head, but sometimes things don’t get done because they are on the wrong list, and sometimes things don’t get done because there simply isn’t enough time (see also point #9).
- We are physically strong. Because we have to be. Benjamin is 19 kilos and he’s not getting any lighter. His buggy weighs a similar amount and needs humping in and out of the car boot daily. Chairs, benches, suction machines, crates of specialist milk, … who needs a gym?
- We spend a lot of time on Facebook. But we’re not (always) watching videos of cats rollerskating or uploading our holiday snaps. Social media is an amazing support network and a source of information. Some of our best friends we may never have met, but we are there for each other across the ether. So if we’re not asking a question or ‘venting’ about how crap the system is, we’re probably answering a question someone else has posed, or giving a virtual hug at a time they need it most.
- We feel guilty all the time. Guilty that we’re not doing enough therapy with our SEN child. Guilty that we’re not making home-cooked meals every night. Guilty that we’re not giving our other kids enough attention. Guilty that we’re spending too much time on Facebook. Guilty that we’re wasting time feeling guilty…
- We have wet wipes and muslins in every room of the house. Nappy explosion in the bedroom? Check. Bile-bag leakage on the sofa? Check. Food-throwing meltdown in the kitchen? Check. I should have got shares in Pampers.
- We live on coffee, chocolate, and wine (or gin). Every time anyone comes to my house, be they friend or therapist, I ask them if they would like a coffee. Please, please say yes – then I can have one too.
- We spend less time on self-care than we should (see also #8). We eat on the go. We sleep with one eye open. We don’t do enough cardio (unless you count running upstairs to get another clean nappy), yoga or mindfulness. My bras have lost their elastic, my hands are cracked and my toenails need cutting. Last week I got my hair cut for the first time since Caitlin was born (she’s eighteen months old).
- We slip up sometimesoften: I forget when it’s World Book Day at school, I forget to take a snack when I pick the girls up from nursery, I forget to brush their teeth, I go out without Benjy’s rescue medication, I go out without my keys, I go out with my dress tucked into my pants (if this is the case, please do tell me)..
- We know our children better than anyone. The medics might be able to tell from his sats and his blood tests that he’s ill, but I could tell 24 hrs earlier from his demeanour. I know his normal colour, his normal temperature, his normal muscle tone, his normal eye movements… I can recite his daily medications and feed regime in my sleep. I can recall all his hospital admissions quicker than you can find them in his file. We are grateful to the doctors that listen to us. We trust the ones that ask us questions. We remember the ones that ignore us.
- As you can see from the above, we are a mass of contradictions, but…
- … we are people too. We’re not superwomen. We’re not scary. We might have less conversation-starters about Breaking Bad or Love Island (are those even things people watch? I haven’t a clue) and more about bowel movements and medication regimes, but we’d still love to chat – even if it’s just about the weather.
- We can’t count.