Welcome to day 4 of 9 of guest posts here on my blog. I didn’t want to leave my blog a barren wasteland whilst I take some time out so a group of lovely bloggers offered to write a post and share some thoughts, recipes, ideas and crafts with you.
I have met Steph from Steph’s Two Girls a number of times now and she is a really great lady. Here she explains what it is like to have a child with autism.
Hi, I’m Steph, and I’m delighted to be writing a guest post for Victoria as her blog is just fabulous! Plus she is one of the loveliest people I’ve ever met, and I know she has a good understanding of autism which helps so many.
I blog over atwww.stephstwogirls.co.uk about family life with my two girls aged 9 and 7. Our youngest girl was diagnosed with autism aged 2 and a half, and we believe she has a specific type called PDA (Pathological Demand Avoidance). In a nutshell, this means she avoids some simple everyday tasks because they cause her great anxiety – her reactions from a young age have always been a little more extreme than most. I’d love you to come over and read a bit more about PDA but also about all the other everyday family stuff we love to do – plenty of baking, photos and having fun in there too!
So what’s it really like being the parent of a child with autism?
It’s different. It’s not easy.
I have one child who is not autistic, and I go through the highs and lows with her; good school reports, difficult behaviour, attitude, changes in friendships, after school clubs, all that kind of stuff, just like most other parents of typically developing children. I’ve used reward charts, and bribery (shock, horror!), and been able to say ‘no’ in a supermarket with only a mild tantrum (her, not me).
It’s not like that with Sasha. Things don’t work in the same way. Her mind doesn’t work in the same way. Traditional parenting just doesn’t work in the same way.
I can see why people find autism so hard to understand; they are not living with it 24 hours a day. Take Sasha at any one snapshot in time and it may seem like life with her is easy. She’s a lovable, sociable, polite, happy kind of girl when she’s in a good mood…
What isn’t so easy to see, is how much effort goes into getting Sasha to be in that good mood.
People can’t understand what they don’t see. Most of the time you don’t ‘see’ autism. I think I’ve said before on my blog that in a strange kind of way it helps that Sasha’s speech is not like her peers. It’s not really behind as such any more (so say the Speech Therapy team who don’t want to offer therapy), but it isn’t clear and she does use unusual phrases, or she comes out with expressions which despite being totally right, are not quite relevant – or vice versa. Take, for example the other day, when I was giving her a big hug (which she spontaneously came up to me for!), and I whispered in her ear ‘Sasha, I love you so much’. Her reply? ‘Mummy, I’m going to miss you when you die’.
Of note here is that I wouldn’t be writing about our eldest girl coming up for a spontaneous hug; that’d just happen and not be mentioned particularly for most neurotypical children. It’s true that our eldest might have given the same verbal reply to my words, but she’d have said it to be intentionally funny, not in a matter-of-fact kind of way.
I wrote in a recent post (Nothing is Safe) that living with Sasha is in some ways like living with a large toddler. There needs to be constant watching, and cleaning, and repetitive warning of dangers; you could leave a fan on in the room of most seven year old children and not worry that they would stick their fingers into it. Not so with Sasha. It’s not just tiring, it’s exhausting.
You often can’t see autism, and most people would not be aware of how much effort goes into living with a child with autism. For lots of children with autism, routines and picture schedules and planning ahead is vital. Living with children with PDA (Pathological Demand Avoidance), who like to be in control (down to anxiety rather than pig-headedness), is like constantly treading on eggshells. They tend to choose the schedule for each day; they like some things to be the same day after day for comfort and less anxiety, but can then change their mind about it when you least expect. Many parents experience violence from their children when the anxiety escalates.
What makes all of this much more difficult though, is the people around who don’t try to understand. Those who have no experience of autism first hand, who seem to think that you can get any child to do anything you want to. Those who judge based on their own experiences, and who don’t listen when you try to explain. Parenting is difficult for everyone; there is no rule book. In our case, I can honestly tell you that parenting our girl with autism is much more demanding than parenting our girl without. It’s definitely anything but easy, and just a little effort to understand can go a long way.
You can find Steph on the following social media channels: