Last week I visited my in-laws’ home and almost started crying at the sight of one square metre of paving stones.
It was unexpected and beautiful and provoked such an emotional response from me. Because two weeks ago in this spot lay a garden bed filled with pretty pebbles.
Pebbles that my seven-year-old Jackson spent Christmas Day attempting to pop into his mouth.
For a sensory seeking kiddo, a visit to someone else’s home is always an exciting chance for exploration but not always a safe environment.
So, the following week my father-in-law quietly removed the pebbles and paved the garden bed. And the next time we visited, I didn’t need to keep a hawk eye on Jackson and the pebble situation.
This was in addition to the sturdy gate my father-in-law installed down the rear of their garden last month so that Jackson could no longer access the steep concrete steps and garage full of very interesting (and sharp) equipment.
How strange to find myself at this point in my life where love is shown to my family in the way of home modifications and paving stones, but I know that many of you will relate to consideration and kindness coming in many shapes and forms. Sometimes love and acceptance is shown with hugs and gifts. And sometimes it is revealed through the preparation of a gluten free option at lunch or the knowledge that my sons Assistance Dog is always welcome to come when we visit.
I know it can be hard to know how to support a special needs family. Every family is different. Every child is different. Some mums can’t ask for help. Others cannot accept it even when it is offered. But it truly does take a village to raise a special needs child, and we’d love you to be part of our village but it’s going to take some effort on your behalf. So if you didn’t know, now you know – there are so many ways that you can support my special needs family if you’re ready to be open, empathetic and willing.
Children with special needs benefit from accommodations.
When we come to your house, just ask: ‘Is there anything I can do to help your child feel comfortable and safe here?’
Consideration and a willingness to be open and accepting goes a long long way in our world.
It’s okay to find the humour in a strange situation. And it’s okay to acknowledge that hanging out with us isn’t like hanging out with other families.
The most unhelpful way to behave is as if nothing unusual is going on when my child has wandered into your bedroom and is balancing precariously on your bedhead.
I see the terror in your eyes when my kiddo is trying to pick up your 200-year-old crystal vase and believe me I’m not too cool about that either. I promise it’s okay to ask questions, we appreciate every time you go out of your way to help my family feel accepted in your home.
You can let me know that if my kid needs a quiet moment he can hang out in the study with his iPad or that your son has a bedroom full of Lego builds that Must. Not. Be. Touched.
If you don’t know how to speak or play with my child, just ask me. I won’t be offended and the fact that you’re open to making an effort means way more than whether or not you know ‘the right way’ to interact with him.
Don’t judge any of it.
My kid might spend the entire visit on the iPad. That doesn’t mean that’s what happens at home. That doesn’t mean that’s what happens every day. It might be a onetime thing that gets him through three hours in an unfamiliar environment. It might be the only way I as his Mum can sit down and converse with you rather than following him around your home to ensure he is safe.
Just don’t judge any of it.
Mums have special needs too.
It can be a big challenge for us to ask for help. We’ve been told over and over that we are Supermum and how amazing we are for ‘doing it all’. It’s an unfortunate pressure that can make it more difficult to say ‘hey I’m not coping right now’ or ‘hey can you help me out this afternoon by doing xyz’?
Sometimes the last thing we feel like is Supermum and we need a few safe people around us who don’t place that expectation on us.
Once I asked a friend to babysit Jackson for an afternoon so that Hunter could attend a special golf day with his Dad only to be told ‘oh sorry, I need to study this afternoon’
Sure, I get it – you need to study, and you clearly don’t understand the gravity of this situation.
A situation where we have been close friends for five or six years and this is the very first occasion where I have asked you to watch my kid. The first time something has been important enough to us, that I would actually ask for help. The first time that I have considered using up a ‘good-will babysitting virtual voucher’ (which are in very short supply in our world) … to put myself out there asking for help only to be told ‘sorry’. It’s a stark reminder that many families have absolutely no clue how restrictive our lifestyle can be. How difficult it is to find people we trust with our kids who cannot yet communicate their needs.
Trust me, when we are vulnerable (or desperate) enough to ask you for help, it’s not something that we do lightly so please don’t let us down.
We go out on a limb countless times, endure huge inconveniences often, making a way out of no way, to support our children, to give them experiences they might otherwise miss out on, and to make their life easier. It would mean so much to us if you would do that for us from time to time.
Dads have special needs too.
I know guys – most of you are tough dudes who mainly talk about footy. I also know – that lurking deeper, is also a yearning to be able to have a vent or talk about your challenges.
Just because someone has a penis that doesn’t mean they don’t also experience the full spectrum of emotions around special needs parenting.
Isolation affects all – and it can be debilitating. You need to know that it’s okay to strike up a conversation about how your life differs from ours. The silence of unasked questions is far more deafening than you saying something ‘politically incorrect’. Pretending our life is unaffected by disability helps no one and I promise we’d rather you asked an awkward question than gloss over everything for fear of saying the wrong thing. The only ‘wrong thing’ is to pretend that our life is just like yours, because that is what truly makes us feel misunderstood and alienated.
Siblings have special needs too.
Our five-year-old lives a life similar to an only child. His brother isn’t really able to play with him yet. He spends the majority of his day interacting with adults. He desperately craves connection with kids.
However, he’s not used to spending a lot of time at other people’s homes because it’s difficult for us to visit homes that aren’t supportive and safe for Jackson. So, while he’d love to come and play with your kids – he might need some extra care and attention to make that happen. Can you make that effort?
He gets lonely. He misses out on all kinds of experiences. So, any opportunity you have to include him in something – please take it. Maybe it’s a little inconvenient for you. But after a couple hours at the beach and bike riding at a snail’s pace you can drop him home to me and go back to your normal life. It’s might be just an everyday bike ride to you but to him it might be the highlight of his week.
Make the effort. It means more to us that you will ever know.
Maybe you can teach your children to actively look for ways to include our family. To invite my kid over for the afternoon or for a sleep over. The benefits of teaching your children empathy and consideration for others who have bigger challenges than them will serve them lifelong lessons in addition to helping out my family.
Remember that just because we can’t accept invitations all the time, please don’t stop asking. One day the stars will align, and we will actually make it to an event or function. It will be just another social Sunday arvo BBQ for you but for us it might be the biggest outing we’ve had in weeks.
Or know that for a myriad of reasons we might never be able to come and socialise at your place or come to the cousins’ beach birthday party but that doesn’t mean you can’t bring your family here. Invite yourself to my house any time. We love seeing you. In fact, we will actually be able to sit down and chat with you and have an in-depth conversation and focus on what you’re saying and relax and have a cup of tea with you (we don’t get to do that much when we go out!) because our home is the safest and more supportive and comfortable environment for our special need’s kiddo.
We aren’t normal. We don’t want to be normal. Our families have special needs.
And we want to hang out with people who get it, who are there for the long haul and who are happy to inconvenience themselves for the good of our children.
It’s easy to use words like inclusive and acceptance. It’s not so easy to demonstrate these qualities and live by those words.
Get creative. Really put some thought into how you can make adjustments in your world that make it easier for us to exist in your world too. Just for a few hours.
It doesn’t need to be paving over the garden bed. It might just be putting the 200-year-old crystal vase away before we get there.
Over to you.