Guest Post: Arlene from Starrtrekking

I’m so excited to welcome a very special guest blogger today, the lovely Arlene from Starrtrekking!

I went to school with this gorgeous soul. She’s a mum, aspiring writer (damn can this gal write!), glitter technician, and middle aged emo with an impulsive streak that manifests in terrible home ‘improvements’ and crazy haircuts. Her blog, Starrtrekking is her life and adventures with her beautiful family in coastal country South Australia, where she writes with beautiful honestly about being a mum to a child on the spectrum, among other topics. Always with a dose of her signature humour.

I’m so happy she agreed to be my guest during Autism Awareness Month to share some very important tips for us all.

Over to you Arlene…

April is autism awareness month and as I am the mother of a child on the spectrum, apparently it has become my duty to inform and educate the world on an annual basis. It’s part of some invisible contract us ASD families are bound to; in the fine print that none of us read but are required to fulfil nonetheless.

Arlene’s son Nate with his beloved Lucy

With the numbers climbing and now an estimated 1 in 100 of our kids having autism the chances are that you know someone who has it. When my son was diagnosed it was kind of obvious that nobody knew what to say or do so they’d ask what I needed. Articulating the help I desperately needed at that point in time was impossible. What I needed was for someone to show up and do what had to be done without asking. This year to fulfil my annual duty I’ve decided to compile a list for the friends and family out there and hopefully make someone else’s transition to this new way of life just a little bit easier.

• When we tell you that our child has autism don’t go denying it. We’ve been through months, sometimes years of seeing doctors, speech therapists and paediatricians. The diagnosis is real. Similarly don’t say, ‘I knew there was something wrong with him.’ The only right thing to say is, ‘Are you okay?’ Followed closely by, ‘I’ll get the wine.’
• Don’t stop visiting and calling. The chances are pretty good that you’re going to walk in on a meltdown and the house is a mess. You may not even hear them on the other end of the phone or they’ll cut you short to tend to an emergency. But don’t stop calling or visiting. Autism isolates the entire family and not just in the early years after diagnosis. Lost friendships are felt for years to come.
• Offer to take the kids to give them a break. If you think you can’t deal with their little one screaming or rocking and flapping for a couple of hours while they rest/socialise/repair their house (or dare I say it, have sexy time) then imagine how they feel living with autism 24 hours a day. Suck it up and give them a little break. Nothing will be more appreciated.
• Make a casserole. Not just a sympathy casserole directly after diagnosis. Every now and then if you’ve made too much pop something in a container and bring it around. Some nights we were so busy dealing with behaviour that tea time was a nightmare.
• If all your friend or relative can talk about is autism it’s likely they’re working some shit out. A good friend will listen to that and not judge you even when you break down into ugly cry. Get the kettle on and settle in for a therapy session. Even better, drag out the wine.
• Talk to their child. Just because they aren’t talking to you doesn’t mean they don’t know you’re there. Bend down, say hello and ask them how they are. Talk directly about what they’re currently doing. ‘Flicking the light switch on and off hey? Looks like unsafe fun! Let me have a go.’ They may or may not respond. It doesn’t matter. You’ve interacted and all those interactions add up so that one day when that child reacts, says hello, passes you a toy, it’ll be like all the fireworks in all the lands have been lit and your world will never be so fucking joyous. For both you and the parents. Promise.
• If you really want your friends or family to attend your function then think about the location. If it’s not fenced the chances are they aren’t going to be able to go. Even if it is “family friendly” keep in mind that this means that neurotypical kids are safe in the surrounds. Not necessarily our little adventurers. So if they say they can’t come because it’s unsafe it isn’t an excuse. Don’t take it personally. The chances are they are gutted they are missing out.
• Please don’t feel that the friendship is one sided. One day everyone gets into a rhythm and life becomes a new kind of normal. Now I have more time for friendships and a little more freedom for social outings but the invites have stopped. Don’t ever stop, even if it takes years, which it really did for us.

This list is inexhaustible and of course each family needs different things. I need more wine and song, others coffee and a nap. Remember that your friend is still there, they’re just going through something and all that stuff they liked to do with you before they’d love to do again. Try to make it happen. They’ll adore you forever.

Flappy World Autism Awareness Month to everyone.

Arlene
xox

Thank you lovely lady for sharing your tips, I’ve certainly learned something and I’m sure many others will too.

I only wish I lived closer so I could pop over with a casserole and bottle of wine. xx

You can find Arlene at Starrtrekking. Pop on over and say hi!