I recently wrote a blog post that garnered a huge response.
It was a ‘tips’ blog, offering advice on how to navigate a friendship with a special needs parent.
That blog was read by more than a quarter of a million people, shared over a thousand times, and sparked conversations between old friends and new friends alike.
It also sparked a little bit of controversy, when some people took exception to the titular use of the words ‘to survive a friendship with…’, which they believe implied that we special needs parents are a nuisance to be tolerated or – worse – a disaster to be survived.
This was not at all my intent, but I can see why it might have pressed some painful buttons for people.
It occurred to me, though, that I was really telling only half of the tale.
I’ve been told by many friends that they just don’t know what to say to me – that their worries seem trivial compared to mine and that they don’t know how to relate to Charlie.
Of course, if friends can’t share their troubles both ways, it isn’t much of a friendship, is it?
That was the reasoning behind my post, but I by no means believe that we don’t have our own ‘end of the bargain’ to uphold.
Here are some of the things I’ve resolved to do better:
I’m certainly not advocating ignorance here – if someone says something deliberately insulting or hurtful, I will react appropriately.
One the other hand, when the Mum at the park smiles and says “You’re lucky she can’t run away from you like my Oliver just did”, or “At least she doesn’t talk back like mine do!”, I’m going to try to stop and recognise that there’s no ill intent behind those words.
I don’t need to make her feel ashamed – that certainly won’t win me any friends!
I can choose a response that conveys that although she may have been a bit thoughtless, I’m still prepared to be friendly. It’s my choice.
This is a bit of an extension on the first one… If an elderly lady uses the term ‘########’ in a kindly tone, should I jump down her throat?
What about an older gent who asks me quite politely to stop my child squealing or banging her fork while he’s eating at the next table?
Or the Granny at the shops who tuts at my attempts to physically restrain my daughter, who is biting her own arm, because it looks like some form of child abuse to her?
I can be huffy and nasty about it or I can respond with kindness.
I might even get a gentle bit of education in there, and that’s got to be a win for our community, right?
I’ve actually overheard an old friend say to a new acquaintance (about me), “She used to be pretty cool but since she had her youngest kids she’s gone all serious and never comes to anything any more. I hate when people use their kids as an excuse. I mean, they’re portable, right? My sister had a baby and she just takes him everywhere with her.”
Apart from the gross inaccuracy (I was never really cool), the complete insensitivity of the statement took me by surprise.
Having just met the other woman, I wanted to rush back to the table and defend myself, but what would have been the point?
To my old friend, whose life hadn’t altered one iota, I was a changed person, and – from his perspective – not all for the better.
The thing is, I know this guy well, and I know he wouldn’t have meant to be hurtful.
He was just completely unaware of the depth of change that has happened in me since Charlie was born.
And probably a bit hurt by the change in our friendship too.
I made the effort to get to his next event and join in on the singalong and wine quaffing with gusto.
It was great fun, and I did feel like the old me - sometimes, I must miss her too.
As a bonus, we ate breakfast together the next morning and I told him a bit about my new life.
I think we’re both the better for it.
This one is tough.
If parenthood is the ultimate juggling act, then our brand of it is in another stratosphere.
On top of the Mum/Medic/Wife/Sister/Daughter/Friend/Student/Employee roles, I’m trying to be Doctor/Nurse/Physio/Social Worker/Lobbyist/OT/Speech Therapist/Psychologist at the same time.
There’s often so much noise in my head that I can’t sleep.
I’m blessed with the double-edged sword of three other children.
They keep me sane by distracting me from the constant worry about Charlie, but they add their own grey hairs to my once-lustrous chocolate locks.
It’s important to have more than one string to your bow.
It makes you a well-rounded person, and a far more interesting friend!
In making room for new experiences – or chasing down old, much-loved ones – I’ve reconnected with people and made new and interesting friends, and that can’t be a bad thing.
Positivity is a choice.
The harsh reality of this life is that sometimes it just plain sucks.
Some days, it’s hard to see the silver lining in our situation.
There are so many worries and it’s so damned isolating.
Even in the bleakest moment, the old adage ‘smile, and the world smiles with you’ has some meaning.
I don’t want to be sad all the time, and I certainly wouldn’t seek a friendship with someone for whom happiness seems a foreign concept.
I’m not saying that we should mask our emotions or deny them in any way, just that we should make the effort to pack away the negative and bring out the good things every now and then.
It’s okay to smile, to joke, to laugh, and to pursue joy - as a family, as a couple, and as a person.
And it’s healthy for all of my children to see me doing just that.
Does your child wear pads or nappies/diapers?