For a couple of years now I've been very invested in my page on Facebook on a daily basis; I love that there is such a great community over there and I hope it supports other families as much as everyone has helped me. I'm becoming more aware of the 'frailty' of social media though, and the fact that it's less permanent and not as easy to find information as permanent blog posts are.
In the posts below, various topics are covered in short bursts. Maybe at some point I will find the time to come back and expand on them in longer blog posts, but currently I'm supposed to be writing a book so this will have to do, for now!
In my session I will be talking about sharing my family life online and lessons I’ve learned as I try to raise awareness about PDA. And I will be joined by gorgeous Hayley from Downs Side Up - two old school bloggers, hopefully we have a fair bit of experience between us which we can share!
Today I’ve just finished running PDA training on behalf of the PDA Society and I feel like I’m buzzing now. I’ve been doing training for a few years but I never get bored of sharing information about PDA. I’m passionate about trying to help other families in the same way I was helped in the early days. I’m also still passionate about blogging, which is not bad considering it’s been eleven and a half years since I started!
So, who’s coming to Blog On then, hands up?! There’s no enforced hugging but personally I do love a hug, or just a smile will do if that’s more your thing 🙃 If you’d like more details about the conference, head over to their webpage or Facebook page or feel free to ask me questions!
{Photo ID: Blue background with text Blog On Xmas Speaker Announcement, with a head and shoulders picture of grey haired me smiling at the camera}
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I think that one of the biggest areas of concern for lots of parents when it comes to their children is about feeding them. Mealtimes. Hand up if you're groaning with me?!
This is a particularly common theme in conversations with other parents/carers of autistic children, I've found. Of course it doesn't apply to everyone, and if your child is one of the ones who will eat anything and everything that is put in front of them, then I'm very happy for you (but I can also see some downsides of that!).
I've posted before about our bulk buys of certain food items - when you know, you know. The fear of running out, or of the supermarkets changing their packaging (or even worse the actual recipes) for certain items can be enough to make us feel constantly tense.
Today I've come across a series called Ask the Storybots on Netflix, and in particular an episode called 'Why can't I eat dessert all the time?' which might help if your child has a sweet tooth. Sasha doesn't really have this problem, she just seems unable to accept most new tastes.
Obviously I know this won't fix the problem if your child has a very restricted diet like our girl does, but it's still worth sharing. Some people might want to look more into ARFID - Avoidant/restrictive food intake disorder (see www.arfidawarenessuk.org/copy-of-what-is-arfid-1)
Sadly our girl is past the stage where she might listen to this but it could be worth a try for other children?! I always like to share great information videos because I think so many children enjoy watching moving media like this these days. Maybe adding something like this to a playlist, or leaving it playing on a TV nearby, is a great way to let some information sink in. It can help avoid us parents trying to impart it directly (which can often not go down so well!). Another good series is Wonderquest, made by Stampylongnose, the Minecraft expert YouTuber: www.youtube.com/user/Wonderquest/featured
It's always interesting to hear of others who share the same tastes or who bulk buy too - let me know if there's any other Peperami fans out there?! Or if not, what is it that your child enjoys?
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The type of autism known as Pathological Demand Avoidance is a huge part of our life and (no surprise here) I’m still passionate about trying to help others understand what it means. I think talking/writing about our experiences helps other families feel less alone and isolated, if they have a child who is behaving differently to their neurotypical peers.
I’ve published a short video on YouTube talking through the main characteristics of PDA and how we recognised this in our daughter. I’d love it if you got chance to pop over there and give it a thumbs up - not that I think I’m ever going to be a YouTube star or anything, it’s just that every little opportunity to spread the information a bit further can help more people!
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On Wednesday I spent a full day at Alton Towers with our eldest daughter and I tell you what, I’ve slept very deeply for the two nights I’ve been back home. Maybe that’s the answer for anyone struggling with sleep - send them to Alton Towers! This is one of my fave pics of the day - we had a lovely walk through the gardens and stumbled across this lovely old building (not really on purpose, we were just trying to get from one side of the park to the other!).
We had a great day, lots of new rides in the bag for both daughter and me - it’s been over 25 years since I was last there! It’s a tough call because they are all good but I think my favourite was Thi3teen, and hers was Galactica.
Alton Towers is not the sort of place Sasha would enjoy. She’s not a coaster fan and she’s too old for CBeebies Land now, plus the huge amount of walking involved would not go down well. That’s one thing to thank lockdown for - with Mr C working from home, that’s enabled me to get out of the house more. And eldest is GCSE year so now off for the summer, yippeee!
Because we were away at the weekend too I now have a to-do list as long as the M1, but it was all worth it. It also didn’t stop me from using up precious time trying to create a mini video of our day out - you should be able to see that in my Stories soon. Creating and editing doesn’t come naturally to me though - it’s something I enjoy doing but don’t do enough of, so my skills are seriously lacking in that department. What might take someone else ten minutes probably takes me an hour!
On the whole I reckon I manage OK with technology and social media, but I know my girls would disagree because they are young and know everything... *wink.
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Sometimes it snows in April....
Today this post by Autism with a side of fries popped up on my timeline and I instantly related to it. In it, this American mum of an autistic boy/young adult writes about the feelings which recently hit her when she started to see other parents sharing photos of proms, and graduations, and of their children having recently passed driving tests....
Although Eileen lives in a different country to me, I've felt these feelings, and I'm pretty sure they are the same the world over for many parents of children with additional needs. The milestones which our children will possibly never meet, but most likely not meet at the same time and stage as their neurotypical peers. I mean, never say never, but for those of us who have children at key stages and can see what is happening now or in the next few months, we can be fairly sure that our children will (or already have) miss out on some life experiences.
Initially I hesitated about sharing this post, because what I definitely never want to do is rain on anyone else's parade. As Eileen says in her post, I love seeing pictures of family and friends' children who are getting to pass through these stages. It's not about being bitter or jealous of others who do get to do these things.
It's more like a very deep seated wish in your heart that your child could have some of this 'fun' and happiness. Sometimes this is about us as parents/carers, wanting to see our children walk alongside others (the majority?) of the same age. If that's the case, it's maybe easier to not hold onto that wish quite so tightly. But when you know your child wants it too, and they are feeling that sense of 'missing out' or even a sense of failure, then it's pretty hard to bear.
Read Eileen's post here: autismwithasideoffries.blogspot.com/2020/02/sometimes-it-snows-in-april.html
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One of these days, I will get another blog post written, I promise! Apologies for the silence over on the blog - May and June are always my busiest months of the year, and this year I've also been doing some extra work (which I love!) running online training for the PDA Society. Lately I've also been reading some great books which I will be posting reviews of soon - more PDA literature, and more ADHD books too.
Today I finally managed to send out my very first Steph's Two Girls Newsletter 🤩 I'm hoping to send one email a month, to update folk with news on how my book writing is going - trying to make myself accountable! So if you fancy helping me out and joining my list, please do sign up here:
Our weekend away to Center Parcs was amazing, just the tonic we needed. Sasha coped very well despite the fact that there are some Covid restrictions still in place, but it's clear that she was thrilled to be home again, back in her comfortable place and no doubt she will enjoy sleeping in her own bed again tonight.
Yesterday teatime we booked a meal out at the Hucks restaurant in CP - a familiar place to Sasha because we have been with friends over the years, with varying success in terms of how long Sasha has let me stay with everyone else, because she's not interested in the food and finds the environment all a bit loud and busy. Yesterday was amazing, a huge step forward for Sasha. She let me choose a chicken burger and fries for her from the menu, and we ordered some icy water for her to go with it. The water turned up with lemon in and whilst Mr C thought just taking the lemon out would be OK, years of experience has taught me that we needed to quickly ask for a fresh glass with no lemon in the water. Thankfully that was sorted v quickly so Sasha was able to 'un-tense' again.
Then Sasha's food turned up - and far from being like the chicken burgers at McDonalds (which was a new food added to Sasha's weekly McD meal last year, I'm still celebrating that one!), it was a grilled chicken breast sitting in a seeded bun. I steeled myself, waiting for an outburst, but Sasha sat there quietly and after an initial look of distaste, she began to pick at it and even used her knife and fork to cut it herself. OK, so she didn't really eat much of it at all, but the big win was that she tried, with no fuss. Amazing!
Two things helped with this - first, that we let Sasha have her iPad on at the table, with some cordless headphones which she has only recently started wearing and which she is loving. Yes, in an ideal world we wouldn't be using technology at the table, but for Sasha this is a way of regulating herself and blocking out the other sensory onslaught which comes with any public place. The second thing which helped was actually sitting back and leaving Sasha alone to decide for herself if she wanted to try it. This tactic wouldn't have worked when she was younger but now she's a teenager it's as if a switch has been flicked in her head and she does want to do more for herself independently - pretty much like every other typical teen then!
That's just one small update from the weekend. Of course there were challenges too, such as when we came out of the pool on the first day and Sasha suddenly decided out of the blue that she wanted a Costa toastie. That would have been great, but Center Parcs has Starbucks cafes not Costa. If there hadn't been a queue then she *may* have agreed to try that instead, but as it was, the mood descended for the next few hours because she had set her heart on having a toastie, sigh. But it didn't spoil the weekend and was actually another good exercise in terms of letting her work through her feelings for herself.
So yay for us! I hope everyone else managed some good time at the weekend, although I know it's not always easy (and sometimes far from it). If you've got any small wins to share, I'd love to hear them?
Tonight I'd like to share this article on PDA which can be found over on the Sensational Tutors website (you may recognise someone in it 😉): www.sensationaltutors.co.uk/pathological-demand-avoidance/
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I would have said goodbye to the school system some time ago if it wasn't for the fact that our daughter still wants to be in school. It sometimes feels as if she is in the minority wishing for this. The desire is not being driven by the thought that the teachers can teach her much, but more so because she knows school is what most children of her age do. She wants to mix with other children her own age, in a setting which she can identify as school (rather than separate home ed type activities, which cause her a lot more stress and anxiety because of being less familiar and more unpredictable).
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Pretty much every year since they were born, I’ve made and decorated cakes for my girls for their birthdays. Number cakes, various characters, shapes and colours, and even cakes made to their own special designs (the one with the disco ball was particularly memorable as I stayed up until the early hours sticking on all the tiny squares to represent the mirrored tiles).
A couple of weeks ago, I asked Sasha what cake she wanted for her birthday. In previous years she been quite decisive and directive, but this year she said she didn’t really know. Just like she didn’t really know what birthday presents she wanted. It’s tough being a teen.
She also pointed out that she doesn’t really like eating cake anyway, and for the first time she also voiced her feelings about not liking the whole birthday cake experience, with candles which make her nervous (because, fire risk), and everyone’s attention focused on her. Or maybe it’s just our singing she objects to.
I figured that was one less job for me to worry about this week and I suggested picking up a shop one instead - and I had the bright idea to make it one that I might like so it could double up for my birthday l too!
So our joint birthday cake from M&S looked better than it tasted, which was slightly disappointing! But I’ve also got some birthday scones for tomorrow so I reckon they will make up for it. We forgot to bring any candles to Center Parcs but that’s probably just as well seeing as the fire alarm has already been set off once already.
Thank you so much to everyone who left birthday wishes for me on my posts yesterday ❤️ I always feel bad about not being able to reply to every comment, but the girls would tell me off for being on my phone too much if I did!
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Sasha is not really a fan of cards on the whole but she liked this one! Funny fact is that both her Dad and I bought this card separately because we knew it was perfect for her, so now I have to find someone to give the other one to!
{photo ID: birthday card with fries with faces on the front, with speech bubble saying chip chip hooray, sitting in a packet with words Birthday Wishes just for you printed on it}
Today is Sasha’s 14th birthday and chips (well, fries) will of course feature in our day later on 🍟 First, she will be going to school on her birthday - something that she’s not done for at least 5 years I think (2 of them being due to the day being a weekend!). It’s amazing to think that she actually wants to go to school today (it’s only 2 sessions, but it’s still school). All credit to the fab teachers who have encouraged her so far, and to Sasha herself, who has changed and matured a lot over this past year.
I have been given permission to share her artwork today - my chest puffed up a bit when I saw her post this morning, I’ll admit.
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So that's just a handful of my posts from over there - no doubt I will carry on posting while I can as I fully admit it's a bit of an addiction! If you want to join in the conversation, find me at www.facebook.com/stephstwogirls
For more information about PDA, please read the book shown below:
* this is an affiliate link and I may receive a small commission if you click and go on to buy anything. It won't cost you any extra.
(Other PDA books can be found in my
'Books about the Pathological Demand Avoidance profile of autism' review post.)
To find out more about our experiences, please check out our 'About Us' page or the summary of our experience in Our PDA Story Week 35. If you are looking for more online reading about Pathological Demand Avoidance, the posts below may help.
What is PDA (Pathological Demand Avoidance)?
Ten things you need to know about Pathological Demand Avoidance
Does my child have Pathological Demand Avoidance?
The difference between PDA and ODD
Strategies for PDA (Pathological Demand Avoidance)
Pathological Demand Avoidance: Strategies for Schools
Challenging Behaviour and PDA
Is Pathological Demand Avoidance real?
Autism with demand avoidance or Pathological Demand Avoidance?
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