Tuesday, 27 January 2015

The BEST way to respond when someone says "my child has Autism"

This is not going to be a post bashing people who say the "wrong" thing. I don't think there is a wrong or right thing to say, but I do think it's something that makes people a bit squirmy. What I want to do is bust the myth that whatever you say will be offensive!
I've read a lot of discussion about people's reactions when a friend/acquaintance/colleague/family member says their child has autism. It's a pretty passionate topic for a lot of mums and dads, and most would agree that the "what not to say" list includes a few of these:
I'm sorry
Oh no that's terrible
What do you think caused it?
Are you sure? She looks normal to me!
Will he outgrow it?
Gee you hide it well!

The reactions that tend to be the most praised and appreciated often come from parents who have a child with special needs or are very close to someone who does. Probably because they have heard it all before!

Here's the secret:
It's absolutely OK to not know what to say. It's even OK to say "I don't know what to say". If your response is a caring one you're unlikely to cause offence.

If you'd rather not end up the subject of a vent in a private Facebook group, here are a few gentle tips:

Forget everything you already know about Autism
There's a saying that goes
If you've met one person with Autism, you've met ONE person with Autism
Every single experience is different. Even if you've been through it yourself, it will be different for every other parent. Before you question it because your sister's friend's cousin-in-law's son has Autism and is the complete opposite, just listen. Every child (and adult) with Autism has their own challenges. Just because they share a diagnosed disorder doesn't mean they're not just as unique as the rest of us. There's a reason it's called a SPECTRUM.

You may have heard that vaccines cause Autism. They don't. End of story. Just don't go there.

It's ok to be curious
I may only be speaking for myself but if you'd like to ask questions about our experience, go ahead. I'll be more than happy to answer as best I can. If you're wondering whether she flaps, if she has trouble socialising, if she has any intellectual or language challenges - just ask.

Don't assume
What you see in public is often just the tip of the very large iceberg. We're not hiding it, we're using many many strategies to manage it. Don't assume that because my child looks perfectly fine she's not heading for full meltdown if we're not sticking to the schedule, or making sure she gets a break when she needs one. By all means feel free to tell me we're managing very well right this second, but that may not be the case in 5 minutes time.

So what is the best response? An honest one. If you think that sounds really tough, say so. If you're not sure what to say, say so. Don't pluck a platitude out of thin air because you think that's what you should say. And if you need to think for a few seconds before saying anything, go ahead. It isn't the end of the world, she's still the same child she was yesterday and the last time you met her. I won't bite your head off if you ask what that means for her, or for us as a family. And although I don't really need you to be sorry, I do understand that you're not necessarily pitying me, and I understand that you might not know what to say. Until a few years ago I didn't really understand it either, and I probably would have said all of the "wrong" things too.

And a little note for other ASD families:
People won't always give you the response you want. The vast majority of the time they don't know what to say, and if they say something "wrong" please take a moment to consider that they might just not understand. Comments like "are you sure, she looks normal" almost always come from a caring perspective. Before you get mad, think back to before you had children and what you might have said in their situation. There's no perfect answer, there's no perfect person. Take the opportunity to educate them and put a positive spin on it rather than fume about it for a week and next time they'll know a bit more and do a bit better.

I'd love to hear in the comments the best reactions you've had or heard, and what you think is the best response xx

Thursday, 4 December 2014

Coming clean (literally!)

I have a confession.
We live in way more mess than I'd willingly share with other people. I do manage clean dishes and clothes 99% of the time, we just seem to have stuff everywhere.
I hate mess. I feel suffocated and overwhelmed and cranky because I can't get on top of it. Not can't. Don't. I DON'T get on top of it. I don't know why. I don't try hard enough? I don't have the motivation? I procrastinate? We just have too much stuff? Probably all of the above.
One of my absolute favourite blogs is A slob comes clean and I'm guessing if Dana feels/felt the same way then there's probably lots of others too, otherwise I'd just keep it to myself.
Every time I feel overwhelmed, cranky or suffocated I'm going to tidy something or declutter a small area. Kind of like a drinking game for the perpetually messy person! Apparently when setting goals they should be measurable, so here's my goal for today:
I will be able to walk through the lounge room and hallway in the dark and NOT trip over anything.
I guess if I come back tomorrow with a black eye or sprained ankle from a small stray trolley, truck or camper van we'll know it didn't go well.
Wish me luck!

Monday, 29 September 2014

The {great} facebook suspension

2 weeks ago I deactivated my facebook account. There wasn't really one trigger event I can put my finger on, it just felt like a good time to step away for a bit. It really is a double edged sword: I've made friends I consider among my closest even though we've never actually met in person. We've bonded over a shared interest (mostly being pregnant at the same time and having children the same age) and there's always been someone there, no matter the time of day or night, who can answer a question or just generally sympathise. Perhaps this was part of what was making me feel a bit unnerved, the idea that my IRL relationships were suffering because I was so busy venting about them on facebook I didn't actually invest in them. Perhaps.
It's been 2 weeks today and in that 2 weeks I have done a fair bit of decluttering and general house stuff that's waited far too long. I've spent a lot of time with my children and husband. Actual focussed, mindful, quality time. Not talking to them while reading off my phone/tablet/computer. Because as much as I'd love to think I'm the master of multitasking (no really, just ask me!), you can't give your full attention to more than one thing at a time. It just isn't possible.
I can honestly say I'm not missing it. I'm missing the people, certainly. I'm wondering what they're up to - have I missed new babies being born, new milestones, cute photos, big news? And I'll admit at least once a day to thinking "oh I'll just check faceb..." and then realising I can't. I really didn't think I'd make a week, so to be not missing it after 2 is feeling quite powerful. We'll see how I feel in another 2 weeks!

Monday, 15 September 2014

The Daily Dance

I'm going to start this one with a disclaimer: I am not a psychologist or any sort of expert. I'm just a mum who is wading through all the strategies finding what works for my daughter (with the assistance of some actual experts).
Lil is almost 4 and has autism spectrum disorder (ASD). For further information check out www.autismspectrum.org.au. Routines are pretty critical for her and using visuals has been a lifesaver for us. This is a big reason *I* am trying to be more organised (and lucky you being along for the ride!). When she asks "what's for dinner" she actually needs to know, and although to another kid "It's a surprise" (ie I don't know) wouldn't be a big deal, it IS a big deal for her. I can't spring it on her 5 minutes before it's served and expect her to just go with it. She's not being fussy or demanding, her brain just can't cope with that. So I mostly have a meal plan. Actually I currently have a Michelle Bridges 12wbt plan, but that's a whole other post!
Back to the visuals. These can be beneficial for any child who has trouble with transitions. I also use them with Bel and find that when I do the transitions are easier. Children (ASD or not) like to know what's coming next.

This is what our morning looks like. The blank spaces are so that I can add different activities and what we're doing for the day (preschool, Kindermusik, grandma's house, shopping, etc). These are a separate laminated picture which is attached with velcro. This is a screenshot from the software I use.

This is our evening routine:

 Again, the blanks are for adding variations like shower or bath, washing hair, etc. The evening is a little more detailed because it's the more stressful time of day. We're all a bit tired and it's easy to get wound up when we should be winding down. When it comes to detail, this is the general rule I follow:
the more anxiety associated with an activity, the more detail in the steps.
So for a child like Lil who is particularly anxious with the bath and shower, break it down in to even smaller steps. Taking clothes off, getting in, washing, washing hair, water off, drying, etc. I also make sure the routines are filled in the night before, springing hair washing on her when she's about to get in the shower never goes down well.

If this is something you'd like to do with your child, I would highly recommend checking out www.pictoselector.eu. This is an easy to use, free program which allows you to produce your own fully customised visual boards. You can also follow Picto-Selector on Facebook.

I would love to hear your suggestions for children's routines, or any other posts you'd like to see in the future. I'll be back later in the week with a progress report on my own routines!

Linking up to #MummyMondays at Multitasking Mummy

Wednesday, 3 September 2014

Routines, Rhythms and Reflections

I've been thinking a lot about routines. Lil has a visual board so she can see what her routine looks like for the morning and evening, this has helped a lot with her anxiety and she loves putting her board together and having some control. Other than that, there isn't a lot of rhythm in our day, and I think we would all benefit from it. Currently I get up, showered, have breakfast, get dressed, etc etc in whatever order I feel like on the day. And our house is a shambles and we're always late. Probably not a coincidence? Same goes for night time. Eventually the dishes get done, washing is folded, dogs are fed. And I get to bed on average 90 minutes later than I'd like to. I'm starting to see a pattern.
I could write myself a routine for morning, afternoon and evening and tell myself that from tomorrow this is how it's going to be. I'd give it 2 days before the new routines fell in a heap. 2 words I know I have to apply to this kind of situation:
baby steps.
I have a pretty printable (because... why not?), and a plan. I'll update as I go, but for now I'm going to try 2 things in each section. I've divided my day in to 3 because that's what works for me. Afternoon is anything that happens between afternoon tea and dinner (anyone else notice their day is always structured around eating?). Evening is after dinner, usually after the kids are in bed.
If you would like to try this yourself, feel free to download the printable and I would love to see what your routines look like!
There is a post coming very soon about kids' routines and visuals, I'll add a link as soon as it's done.

Overwhelmed and underdressed

Many of us know that drowning, buried alive, overwhelming feeling. Especially when we want to change a lot of things and don't know where to start.
So, you want to 'get organised'. It sounds perfect, you'll have a place for everything and everything in its place, a diary where you never miss an appointment or a bill and a schedule that makes sure you're never running out the door late with breakfast to eat in the car. Just take a minute and think about what you'll need to do to get there...
Are you feeling it yet? Chest a bit tight? Wondering if you can hire a fairy godmother to do it for you?
A whole 2 or 3 minutes in have you already decided its impossible and just too much work?

Here are a few tips to help you shake that overwhelmed feeling and get on with it. If you want to make change, in any area of your life, and it all feels like too much, keep reading.

  • Accept that it isn't going to happen in a day - or an afternoon, or an hour. Change takes time. Where you are now took time, and where you want to get to will take time
  • Break it down into manageable pieces - a manageable piece for me will be different to someone else. Start with very small tasks if you're not sure and work your way up to bigger ones. A good example might be tidying up or decluttering a drawer, or a shelf (or half a shelf!) rather than aiming for the whole cupboard or room. 
  • Set yourself up for success - do you feel motivated in your pyjamas and slippers? No, me either. Get dressed first. Seriously, it makes a difference.
  • Use a timer - your smart phone will have one, your microwave or oven has one, if all else fails use one on the Internet if you don't have anything else. Start with any amount of time you like, you can actually make a difference in 2 to 5 minutes. When the timer goes off, stop. Go do something else and come back in a little while. 
  • Don't think, just do. Choose a task, get your clothes and shoes on, a glass of water, and your timer. And go. 
I love this quote from Robert Collier:

Success is the sum of small efforts repeated day in and day out
If that's too hard to remember, this one is also good: just keep swimming, just keep swimming. Surely if Dory can manage it the rest of us can!

What do you do to keep going when you're feeling overwhelmed?
*Image courtesy of artzenter at FreeDigitalPhotos.net

Tuesday, 2 September 2014

Broad horizons and baby steps

When I first got the urge to start a blog, my first question was 'what will I write about?'. At that point, I wasn't fussed. I just wanted to write something. I love to write. I'm a bit awkward when it comes to actually conversing with people, and most of my close friends are on the internet. There's something I love about typing as opposed to speaking, I think it's the safety of the backspace and delete buttons.
So, what will I write about?
Anything and everything really. I'd like to think I have some good ideas, and sometimes not-so-good ideas that produce valuable lessons. My current focus is on being more organised and efficient and less overwhelmed. Pretty sure I'm not alone there?
To give you a broad idea:

  • Parenting 'stuff'. I'm no expert, but I do love to read and try out new ideas and share the successes and disasters. Sometimes this might be ASD related as I learn some lessons along the way.
  • Organising. This is where I need a lot of work. As I go about getting myself sorted out I'll share what works for me, just in case it might work for you, too.
  • Hobbies. Occasionally I hope to throw in some recipes, photos, crochet resources and anything else that interests me. I recently got my own Thermomix and love exploring recipes so I'll share my favourite recipes and just pretend the disasters didn't happen, OK?

Who am I?
I'm a wife and mum of 2 girls and we live in Lake Macquarie, NSW. I enjoy music, crochet and photography.
Lil, our eldest daughter, is almost 4. She is quiet, gentle, cautious and likes to take everything in, amazing us every day with her desire to learn. She loves music and has a big imagination. She is also on the Autism Spectrum. Bel will be 2 this month and is a little ball of giggles with a big attitude. She loves to laugh, play games, and dance.

What's next? How about I go work on another post, and you tell me a bit about you in the comments?