Square pegs in a round hole

Where do you go when you don't fit it? It's simple really you usually go nowhere. I'm constantly frustrated that Bella is a square peg in the round hole that is society but that's no secret. I'm always spreading Autism awareness and understanding by blogging, talking to people and just refusing to not stop taking Bella out into the community.  I know lots of people through my work who all have children with disabilities, mostly autism but there is a very wide variety from very profound and rare conditions to ones that we hear of more often like Autism, Down Syndrome and Cerebral Palsy. One thing I have heard a lot from non-Autism SEN parents is that "Autism is fashionable" "There are so many Autism Friendly events." It almost makes me feel guilty for occasionally complaining that getting out is hard work.

Almost.

But what happens when your Autistic person doesn't fit the mold that people expect. What if the Autism Friendly events (which I think are amazing by the way) don't suit your child? Logan prefers a dark cinema with loud sound..basically a regular show...but Bella finds all showings difficult unless it's a film she knows inside out.  Autism Friendly often doesn't account for wheelchairs which is an essential for Bella. 

I have two children on the spectrum with different needs but the same diagnosis.

What is the answer? Well I usually go to the regular showings as Logan invariably gets more from these types of things whether it be cinema, theatre etc but I still take Bella. She sits there with her headphones and iPad on, sometimes she'll sing songs (loudly always loudly) or kicking her footplate but at least she's not missing out. You have to grow a thick skin as a SN parents, you have to try and not make too much eye contact with people outside of your circle.  Most people are polite, even when they do the tut and huff, turning round in their seat to show their displeasure of the added accompaniments Bella is making they will realise...eek wheelchair...and snap their heads back round to the show or smile at me widely hoping I didn't notice their initial stern expression.  However some people just don't care and with grunt and tut their way through the performance wishing the noisy disabled kid behind them would bugger off.

I am not a brazen person, for the most part I am haunted constantly by social anxiety but Bella creates little for me.  Things have to go really far for me to feel embarrassed or awkward, even her shouting out "Ben and Holly's Little Kingdom episode one" "Ben and Holly's Little Kingdom episode two" at a recent showing of Stickman didn't really faze me..although it did make me giggle. She was in awe of the swirling disco ball lights and that was her appreciation shining through (she loves Ben and Holly!)  No, thankfully I lived in central London just long enough to grow my own set of blinkers, after month of walking through London Bridge tourist hoards at peak season you need them or you get swept away in the crowd.  Now I use them to block out the looks, the sniggers or the random pointed fingers.  Or maybe I just block out their intent, why wouldn't they look at Bella? She's beautiful. Why wouldn't they laugh or point? Sometimes her singing is so loud I can do nothing but laugh with her.  People used to stare at Logan when he was in his hat phase, well a kid rocking a woolly hat in July is a sight to behold, and then it was masks or costumes. It was just normal (well our normal) for him to have these comfort blankets that I'd often forget he was wearing them when people would point at him.

The public can be ignored, I don't care what they think.

What about when the places where you don't fit in are within your own family or friendship group? That kind of thing really stings. As a rule I rarely take Bella to new houses as she just has no boundaries, she seeks out beds and gets in them before even making it to the lounge. She'll run taps and line up your ornaments if you have them.  Often this doesn't go down well and it is then that my anxiety really kicks in. I've spent whole play dates following her around and trying to stop any unwanted behaviours, I've spent time at families houses holding my breath hoping that we can make it out without something getting broken.  Because of that we go to very few peoples houses. 

Luckily we have a small very accepting family and a few friends who are happy for Bella to roam. This makes all the difference and stops us from feeling like total pariah

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.

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?"

"No."

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.

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!

CLICK HERE

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. 

All 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

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? 

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.