Thursday, 7 December 2017

Christmas On The Spectrum

Christmas is a stressful time of year for everyone, when your children are on the autism spectrum it adds a whole new layer of stress.  Bella doesn't really do presents and she really doesn't do wrapping paper so it's always good fun being asked for the 100th time "What does Bella want for Christmas?"

The reality is that she wants an iPad, unlimited Nutella and all the Doritos she can eat...and you know what? That's what I'm getting her! I've also got her a few miniature figures which she likes and some Tellytubbies headbands, other than that I'm sticking to what I know she'll like and why not?  She isn't like a regular 7 year old so why would I treat her like one? Why would I buy her piles of presents that she isn't interested in and doesn't want? I wonder if it makes people feel better about her condition, if buying her a present and wrapping it up makes other people feel more "normal."  Well that's not our normal, in our house Santa knows that Bella doesn't like wrapping paper and he knows that she likes to be able to see her presents when she comes in the room. He also knows that toys don't need to be "age appropriate" what does that even mean anyway? I love that Tellytubbies make her so happy she flaps her arms with excitement, she didn't actually watch them as a toddler so fairly new for us, who doesn't love Frozen (I certainly do) and Toy Story has never managed to get old in the 6 years we've been watching it.

With Logan it's about managing his expectations, he is so black and white (as many near 6 year olds are) and expects that Santa can bring him anything he wants as his elves just make it.  He wants everything he see's and without expectation management there would be definite disappointment. Luckily (not many people see it as a positive) his birthday is days before Christmas so I get to splurge a bit more but spread it over the two events. I usually try and get him the gifts he's asked for for his birthday and then all his Christmas presents are like a bonus round. He thinks all presents in December come from Santa anyway.

He is much easier to buy for anyway as he has so many big interests, Marvel, DC, Pokemon, Star Wars as well as recent films Cars, Inside Out, Trolls...with him the list is endless. He's also quite a fan of clothes so I never struggle with ideas for this one.

"Who is to say what makes them happy? Oh yes...they are!" 

My biggest tip at this time of year is to speak to the parents and listen to them! They know better than anyone what their children want/don't want. Maybe they don't want anything, maybe they want a jar of peanut butter, a deck of cards or a pair of white socks. Who is to say what makes them happy? Oh yes...they are! The autistic person themselves, whether they are verbal, non verbal, use PECs, Makaton or the old hand grab, they know what they want better than anyone and the next best advocate is their parents. If they say "Don't wrap it up as it'll freak them out" then don't! If they ask you to remove all the fiddly plastic wires and make sure it has batteries then do that too.

Many parents worry that some children on the spectrum miss out on the magic of Christmas, that the magic just passes them by or worse it overwhelms and upsets them. So how about we listen to autistic people and give them what they actually want this year.

Wednesday, 8 November 2017

Good talk!

Bella and I had a conversation! I know that's massive right?

Let me set the scene, she walked into the living room with a Frozen Anna doll and looked straight at me. She has been doing that a lot more recently, I think she's realised that if she looks you in the eye that she melts everyone's hearts and more often than not gets her own way. So she looks straight at me and says, "Pink dolly? Please Mummy."

Well I have no idea where this doll is but I have to look as she's asked for it. I find a pink baby and dash into the living room, our roles reversed. I look at her, she's already drifted back into her iPad.

"Bella." She doesn't react so I leave a beat and repeat, "Bella?" She looks up. I hold the baby up hopefully. "Is this pink dolly?"


She looks back at her iPad and that is it, our first real chat. Questions were asked, answered and a moment I never thought would happen took place.

I know to most families this "conversation" with a 7 year old seems pretty slim but to us it is the whole world.

Tuesday, 7 November 2017

Square Peg Family

Alongside being mummy to Bella and Logan I also run Square Peg Foundation in a voluntary capacity. Over the last four years we've seen our clothing line grow from 3 T-shirts being sold at local events to a whole clothing range being sold worldwide from our online shop.

All our clothing slogans are designed be fun conversation starters about disability, not just autism like many think.

Over the last two years we've seen our main goals come to fruition and we've started running community events for disabled children and families. The aim was always for the clothing to fund our charitable work and for a long time it felt like it would never happen.

Last year we launched a Christmas jumper which was super fun and appealed to many of our YouTube obsessed customers. This year we ran a competition for slogan suggestions and we couldn't be more thrilled with the winning design.

#BeMoreRudolph is an idea I truly stand behind and believe we could all do with being a little freer, a little less constrained by the norm. We could do with taking a leaf out of Bella's book and sing Jingle Bells at the tops of our voices in a busy supermarket in June, or be more like Logan and when you don't feel like being yourself for a while then just throw on a superhero mask and be someone else. 

A lot of our kids stand out whether that's because of behaviour, a wheelchair, a physical disability or a whole list of other reasons. But this is why we love them and why they are so special and unique to us.

If you want to buy a Be More Rudolph Christmas sweater then please jump over to our website, if not please share so that we can sell even more and spread awareness and just as importantly make loads of money to use for more fun activities next year!

Tuesday, 10 October 2017

The Ripple In The Pond

As of late in the Square Peg house it has all been fairly plain sailing. Both kids went back to school without any sort of song or dance and it's quite frankly been unnervingly serene. Logan has had a flying start back, he's settled in, been excited and engaged and has even started an after school club which he now attends alone after a settling in period. 

Autism Awareness Hoody Square Peg ClothingAll of his usual anxiety has been shelved and he's been living life like any regular kid. And then the washing machine broke down... On the face of it this doesn't seem 
like something that would bother most five year olds and for the most part Logan didn't bat an eyelid. That was until he didn't have a damn school jumper and had to wear a Square Peg Zip-up. It's actually one of his favourites... but its green and his uniform is blue, it's a zip up when his uniform is a sweatshirt. 

The journey to school, (which takes about 45 minutes by foot and train) started out wobbly but nothing too dramatic. He was unhappy about the suggestion of the anti-establishment outerwear but as it was covered by his coat he jumped on his scooter and away we went. 

As the school came into 
sight he became visibly distressed. He slowed right down and used every excuse in his arsenal to take off the offending zip-up. 
"I don't need it" 
"I'm too warm" 
"It's not uniform" 
"I'll be different. 

"I might get told off."

Oh hello anxiety, we haven't missed you. I reassured him as best I could that I'd speak to his teacher and that all would be well. He looked at me all doe-eyed and I knew my words weren't hitting the spot. As it happened on the way in we bumped into the headteacher. I relayed the whole story and she told Logan it was fine and that she would go with him into his class to make sure his teachers knew.I left school knowing he wast unhappy but what more could I do? I hoped that the headteacher,or the boss of the school as Logan sees her giving him the OK would ease his worries. 

When I returned to collect him at ten past three he was waiting for me at the window chewing his green zip-up but wearing a school jumper. It seems he was outwardly uncomfortable even after receiving the headteachers blessing, so a kind TA took pity and searched out a jumper from lost property. Its not a major thing and it was easily remedied but its just a little reminder of his autism bubbling below his neurotypical surface. 

Two days later the laces snapped on his DM's on the way into school meaning I carelessly suggested he change into his P.E. pumps for the day. Obviously 
this sent him into a shutdown blocking my voice and his teaches voice and just repeating"I don't want to wear my pumps, pumps are for PE." 
I obviously didn't let it lie and reiterated that he could've had an accident but I don't in all honesty think he cared. I was asking him to do something different and unexpected and quite frankly he couldn't cope. 

He walked in in a bit of a trance only once looking back at me with his pain etched on his face. I obviously then ran around every shop in the vicinity to source a new set of laces before delivering them to school. The thought of him spending the day feeling that sad broke my heart. 

As it turns out he never did change into his P.E pumps when he got into class. When I asked why he said succinctly "Pumps are for P. E." He had a point.

Since I started writing this post a couple of days ago he has told me twice that he doesn't want to go to tennis after school. Once because he dislikes missing his daily trip after school to Nanny's (and the treats that ensue) and another time because he doesn't like me not being there for him at the end of that with the other parents. 

Me being able to sense his needs and preempt his anxiety means that I manage him well and this is the reason he isn't under any professionals and why he is considered "normal" by DLA. Twice we've been refused and I'm done with it now, I'm saving my energy for his sisters renewal next year.

I guess variety isn't always the spice of life

Sunday, 3 September 2017

Back to school

 We're back to school this week, is anyone else nervous?  When Bella went back last September after a summer of chronic screentime and lazy mornings the fan was hit with the proverbial sticky stuff.  There were tears, hitting, kicking and school transport buses driving off leaving us on the curb.  This year I have to get her on the bus and then get Logan into school, I feel I can do nothing but cross my fingers. I mention school now and again to try and creep it back into her psyche but it does nothing more than freak her out, so I stop.
Logan on the other hand is super excited, for now. I know him well enough to be on my guard, there are a lot of changes a coming. Have any of you prepped your nonverbal kiddies? 

Monday, 17 July 2017

Holidays are coming...

I can't lie when I say that I am jealous of the parents who post on Facebook that they are desperately awaiting the summer holidays so they can start "making memories" with their kids.  Don't for a minute think I don't want to create said memories with my children however I know most of the memories from past experience.

Friday, 7 July 2017

Our Normal

People often tell me that they don't know how I "cope" with looking after Bella and all the support she requires, adding Logan and his anxiety in the mix and people tend to think I'm a veritable Mother Theresa.  Let me tell you now I AM NOT!

Bella was born and grew up and her quirks became more obvious, she has always been the same, she's just bigger now. Some days are harder than others and some days are harder still but it's just the way it is.  One day she will come and take your hand and say "chocolate milk" and your heart melts. You forget about the screaming and the flooding and the negatives and you move heaven and earth to get her the damn chocolate milk.

This is my normal.  For years it was just us three wrapped up in our little bubble of weirdness and I never cared, It didn't bother me if Bella lay down in a supermarket or screamed all the way down the street in her buggy (not in a neglectful way of course.) I immersed myself in the Special Needs community and still joke that I have no friends with "typical children."

Our normal is having a 7 year old in a buggy, is a 7 year old in nappies who has never eaten a vegetable or a piece of fruit. Its choosing a restaurant based on whether they have chips and nuggets and dismissing ones without. It's knowing that your 5 year old can't talk to people he's known for years and yet will randomly take to a new person like he's known them forever.  It's carrying sachets of Nutella around in your bag along with nappies and wipes as standard. It's not flinching when your daughter screams at the top of her voice to hear her own echo and learning to simply not see the staring public.

This is all well and good until you open your family up to an outsider. Introducing your children to a new partner is always a minefield, when they are the kids written about above it is really only going one of two ways.  Our normal is still our normal I just had to remember that I do sometimes need to explain that normal to other people.  Thankfully I now feel like I have someone else in my corner, someone who will run round to the corner shop at 8pm because Bella dug deep inside herself and requested chocolate milk, someone who is so happy to get a high five off her everyday and who I hear happily chatting away to her while she fully ignores him while watching her iPad.  We have been fully accepted and that is perfect.  Explaining the quirks of both my two took a little a bit more creative wording when explaining Bella particularly to his 5 year old...yes we have two 5 year old boys between us and no they would never be mistaken for anything other than Logan and his much younger friend/sibling.

We are finding another normal as a 5 which still involves nappies and Nutella, Lego and laughter, milkshake and meltdowns.  It's just life isn't it.