Being a parent to a special needs child is difficult. But being a friend or family member of that parent is also a challenge, I have realised. In particular, knowing what to say, how to say it, when not to say anything, and when I need their support, is a testing task.
On one hand they want to reach out and show me their support, but on the other hand they are highly conscious of not wanting to do or say the ‘wrong’ thing. It is a fine line with ever-moving goal-posts that they should not be expected to keep track of.
My good friends are genuinely interested in my child and indeed in me. I am so very grateful for their support, understanding, shoulders to cry on and ears to bend. These friends have developed the ability to discern from my mood and demeanour, whether I want to ‘talk about it’ or not. Unfortunately this does not make me immune to the inevitable question every now and then, from clueless, well-meaning people: “How are things?” This question gives me carte blanche to say as little or as much as I like. It deals me entire responsibility for the conversational direction. It also throws me into a brain-spin of self-destruct mode fighting against being polite and civil.
Often, the question is accompanied with a sympathetic tone, a tilted head and a concerned glance. Do you really want to know, I inwardly question? Really? Because there is no short answer, and depending on whether I had my Weetabix that morning, you might wish you’d never asked.
By now, most of my friends have learned to suffix with specifics, like “how did Jenson’s appointment go for the spinal brace on Wednesday?” or “Did Jenson enjoy that new special needs play group?” then it makes answering so much easier, and I am endlessly grateful for their discernment and sensitivity. But this is often not the case.
“Fine thanks!” is the easy but truth-sparing answer, which usually represents my acute lack of desire to engage in a dialogue about the intricacies of exactly what isn’t ‘ok’ at this moment in time. At this point, most people recognise this as a gesture to move swiftly on to another topic.
“Where do I start?” is the sarcastic answer; you’ve drawn the short straw if you come up against this one and it probably means that I want to unleash almighty hell right now about just how things are far from ‘ok’ at this point in time.
“Please! Not that question again…” is the desperately candid answer that I have only ever uttered silently to myself, while smiling and responding curtly yet politely “Ok”.
My husband, on the other hand, will always give the same answer: “epic!” This has two connotations. Firstly, he absolutely and entirely thinks Jenson is epic, and simply has not found a more fitting word to describe our son. Secondly, he despairs at people’s unawareness and incapacity to understand our boy and our lives, and so opts for this somewhat terse answer.
What actually is ‘ok’ in our world? For me, the very meaning of this word has been redefined over the past two and a half years. Pre-Jenson, this would have originally been synonymous with grand, optimistic, bright and cheery. It can most definitely still mean all of these things, but can equally represent days where I feel that I am only just keeping my head above the water.
If ‘ok’ means Jenson didn’t cry when he realised we were going into the hospital waiting room for the third time this week, then yes, things are ok.
If ‘ok’ means I have managed to squeeze in all of his therapy plans this week along with getting to the office, doing the housework and getting dinner on the table, then yes, things are ok.
If ‘ok’ means I took Jenson to a child’s birthday party where he sat for five minutes at the table without whinging and didn’t throw cake all over the floor then yes, things are ok.
Never has a word been so vague and pointless than in this context: an answer to a question that gives absolutely no indication of the real truth.
What is ok to me is most likely a far cry from what other mums consider to be ok.
But what is great about our little world, is that when we have positive experiences that most people take for granted, such as a stress free family day out or a successful and encouraging hospital visit, then we celebrate disproportionately.
I implore anyone who is friends with a special needs parent to think carefully before asking them the vague question of ‘How are things?’. We know you are genuinely well-meaning and just want to show your support, but this question tends to convey an impression of sympathetic politeness, rather than directed and genuine interest.
Please keep asking! Just make it a little easier for us to answer, and understand that our responses may vary considerably with no prior warning.