Mother's Day

Fantastic Progress

Bella wearing Somewhere Over There Spectrum
by www.squarepegclothing.com

This little legend may be approaching 9 and may be in year 4 but yesterday I got some news that couldn't have made me prouder...for the first time in her school life she is working ON National Curriculum for English!

This is big!

She has always floated around the top of the P levels (the levels before you enter the National Curriculum levels) mainly because it's so blinking hard to get her to do anything she doesn't want to do. Communication becomes a real issue when reading becomes comprehension, she can read and can do it well but can't relay what she has read or discuss it which is vital on the curriculum. There is very little way to check she has understood it and not just memorized words.

Somehow her teachers have coaxed enough out of her, they've thought way outside the box...and then managed to tick the boxes which put her working at Year One for English.

Today I'm proud is an understatement, to say I'm grateful to her school and staff is another.

Let's hope she can keep it going with English and maybe other areas such as maths where she teeters around level 9.

Go on Bella, you've got this!

Kindness

Logan has been working on kindness and being thankful at Beavers. Although he drives me to absolute distraction and we argue more and more as he gets older I honestly don't know a kinder boy. Since before he can remember he has been my helper, my second pair of hands when it was just the three of us. He knew from a very young age that Bella needed to be kept safe and he took it in his stride. It's hard enough being a sibling to a special needs child but it adds further stresses when that child has their own issues.

On his list of things that he is thankful for we just beat pizza and eggs but were pipped to the top position by Lego Club and Beavers ah well 😊

School Residential!

So Bella has been invited to go on an 2 night residential trip with school. Cue me whipping myself up into an absolute panic! Last week there was a meeting at school so I went along to do my due diligence (and confirm that it's not for Bella.)

My overriding feeling was just that...not for Bella. Sleeping away from home for two nights, no iPad, 3 meals of not her specified food, outdoor events, no iPad, sleeping in communal rooms and again NO IPAD! I've been worried about this trip for about two years so going was really a formality so that I couldn't be accused of overreacting.

I sat down in the meeting trying to hold my emotions together, just the thought of Bella going makes me want to cry uncontrollably.

These are the actual facts, the things I need to consider...hang on did I say consider?

*Location is just over an hour away and accessible day and night
*Her school have been going to the centre for 12 years and know it inside out
*Her class teacher is going
*All doors in the accommodation are either lockable or (if a fire door) alarmed
*I can send her with chocolate spread and crackers for if she won't eat anything else
*They've given the option of her just staying one night if preferred
*Most importantly they've said as her iPad is more than a toy that she could take it with her
*She will have two to one as usual
*They're happy to medicate (ie crush tablets in chocolate spread 😂)

I must admit that I'm swaying now, I don't know how this happened? I was reminded that her teachers look after her everyday, they take her out into the community all the time. Just this week she went into Birmingham city centre to watch the pantomime which surely entails many more dangers than the residential?

Have any of your children been on overnight trips and how did they/you cope?

Back to normality...

We've had a really lovely couple of weeks but now it's time for the kids to go back to school, back to routine and back to activity both physical and mental. Both Bella and Logan are back on Tuesday, I haven't broken the news to Bella yet (wish me luck.) Logan is already saying he doesn't want to go but I think he'll be happy to see his friends when it comes to it. 

For Paul the holidays are hard as he works from home which, during the holidays is basically like trying to fly a kite in a hurricane. The kids, the toys, the presents, the arguments the noise... It's a challenge to say the least so a calm quiet house is something to look forward too. 

I will be going back to work (as in physically in the office two days a week, I've never stopped working mentally and am pretty sure I was texting about work while in labour!) It does make a difference when you can take your baby into work though. 

How were your holidays, are you happy or sad that they're drawing to a close?

The boy at seven

So this one turned 7 on Friday, 7! Time really does fly. His day was super busy which is why he looks a bit worn out in the photo. He was up at 5.45 overly excited and he opened all his toys (he loved everything!) It was the last day of term and also his school church performance. His teacher told me that he had volunteered to be a narrator which seems so far away from the boy who last month was too nervous to even audition for the Christmas play to be true. He hasn't even had an ounce of nervousness and he got up and read his line beautifully. Who is this boy? Maybe it's his seven year cycle giving him a renewed confidence or maybe he was more comfortable after enjoying all four school performances that he thought he'd give it a go. Who cares, he did it and I think the experience will stick with him. After school he asked how many invisible gold stars I'd give him which was something I used to do as a reward when he was little and I said the whole sheet. This made him be with pride.
A quick trip to his dad's to open some more presents straight from school was tucked in before dinner with 14 members of our family.

“Give me a child until he is 7 and I will show you the man" Aristotle. If this quote is to be believed I think Logan is set to be one of the kindest, considerate, funniest men I know. He loves so many things from Marvel to Harry Potter (well he is my child) and he is such a good brother I know he'll make a fantastic adult. I'm unsure we'll be able to afford to feed a teenage Logan but we'll cross that bridge when we come to it

When Relaxed theatre is done well.

When I was younger I was all about dance, ballet, tap, contemporary you name it I was into it in a big way. Recently Bella has taken an interest in ballerina’s. It all stems from a Ben and Holly episode where Holly shows Ben her "darrncing." 

A couple of weeks ago the Birmingham Hippodrome announced that they were giving away free tickets to their relaxed performance of Sleeping Beauty. The message spread like wildfire across Facebook and pretty everyone I know with a disabled child were snapping up the tickets. To some it may seem that the word FREE has a strange effect and people will literally take anything if it's free...well in this case I think that is exactly the case and it's fantastic! How often do parents of boys buy tickets for the ballet at high prices, when they a) have no idea if they'll like it and b) probably have a resistant attitude from them like I did with Logan. 



Normally the idea of taking Bella to a 2 hour ballet production seems like utter madness let alone Logan who played his face every time I mentioned our upcoming visit. My attitude was that if they lasted half an hour it would be a success, they would see a professional performance of a ballet they would not normally get to witness and it wouldn't cost me a penny. 

As we took our seats in the packed auditorium I started to feel a little anxious, how long would Bella last, how long would it take Logan to finish all his food and decide it was time to leave? As the lights dimmed (dimmed to a comfortable level, not complete darkness) a principle dancer in full costume joined by a BSL interpreter entered stage left. In complete anti-ballet etiquette he spoke to the audience explaining what was happening. He informed everyone that they wanted us all to be as comfortable as possible, that if we wanted to cheer or boo we could, that chatting to our neighbour was fine and that the door would be open throughout the performance for if anyone needed a break. We were told that if the noise (albeit much reduced noise) got too much that we could find a Hippodrome helper in a sparkly hat and ask to borrow some ear defenders (genius move!) There was also a sensory room located in the stalls bar, where we were seated as well as areas to do colouring and toys to play with. 


Bella had obviously had enough of the dancers chit chat as she started shouting a very loud count down 10, 9, 8, 7, 6, 5, 4, 3, 2, 1 blast off! In a regular setting this is the time I would start panicking, people would start tutting and turning around but not today. The little girls in front did have a peek but I think they just found it amusing rather than annoying. Somewhere behind us I heard someone crying, it was too much for them. Thankfully it cost them only their time. 

As soon as the performance started Logan was transfixed, he had a wobble halfway through sulking and pulling his face when he realised that it was dancing he was watching and enjoying not Power Rangers or YouTube. Bella swung between the trip being an abject disaster with her lying on the floor trying to escape and her catching a glimpse of a ballerina on the stage causing her to jump to her feet flapping her arms so furiously with utter joy that I had to restrain her so that she didn't knock out the ladies on the row in front. "Outstanding" "Amazing" she would shout (I need to teach her Bravo!) 

We all took it in turns when she got too overwhelmed to take her into the sensory room. If the theatre could get maybe one professional grade bubble tube rather than 4 small mini tubes which are really easy to knock over (believe me I know) I think the room would have been perfect. Bean bags, low lighting and a big screen where families could still watch the show were on offer. 

I've been to many relaxed events before but this was easily the best one for me, both children made it to the end of the show and both took different things from it. Years before I ever dreamed of having my children I was one of the first people to work at the Hippodrome when it re-opened after a massive face-lift. I remember being sad that the old-fashioned decor had all but vanished, back then it didn't occur to me how completely inaccessible the old building was. You never know what you need until you need it, I was a teenager and wheelchair access etc was a low priority. I still feel proud to have worked there and witnessed many fantastic productions over a couple of years and I really love that the Hippodrome is growing to include my children and their peers. 

The disability community is strong and I love that on one afternoon I saw at least 6 families we work with at Square Peg Foundation and knew of about 5 more who were up in the circle out of our view. Some left early, the little girl who I mentioned crying before the show started was someone we know, we met them in the sensory room and unfortunately they made the decision to take her home, others made it half way but a whole lot made it through to the end which is just amazing. 

Most of the families I knew had boys which was in stark contrast to when I went to the Hippodromes BRB First Steps which was an overwhelming little girl fest. 

I really hope this is the first of many relaxed performances that we can enjoy, the theatre does a relaxed pantomime show which Bella visited with school as it was in term time but I think being able to go as a family is just the best. Family experiences are at the heart of Square Peg Foundation so thank you and well done to the Hippodrome Theatre

My message to Clarks

I'm posting this only because I think people in general could learn a little more patience and kindness.  Children, whether autistic or not should be treated kindly and their opinions shouldn't just be dismissed as insignificant. Clarks have replied and apologized saying they expect their staff to be friendly and it will be "passed on to the store manager."  They said all the things I expected to hear but I still feel disappointed and unsure as to whether I want to shop there again.

When I work it out I have spent a small fortune in this shop over the years and gotten very little back.  They're almost the only shop not to offer a rewards card or at least a loyalty card...they pretty much rely on being the only foot measuring service around and then charge massive prices especially for children's shoes. 

Hi, I went into your store in gracechurch centre Sutton Coldfield on Tuesday afternoon with my son. The lady who measured his feet seemed new as she got help from someone else. Unfortunately for Logan he is very big for his age (6) so as he was measuring as a 2.5 H+ there were not many "kids" styles available for him. Your assistant brought out about four pairs, only one which he liked as they were from the younger children's range. The other pairs were not age appropriate as they were either slip on, laced or with a pointed toe. When I said that to your assistant she reacted as though personally offended. I reminded her that he is just 6 and in year one so pointed shoes are not appropriate for him. She tried to reiterate that they are very limited in his size and that they would fit. I said no and she was visibly annoyed. By this point my son was getting very upset and refusing to cooperate. She showed him a pair of shoes and said "look they're like the other pair you liked." The only similarity was that they were a) black and b) shoes. She had absolutely no compassion towards the fact that he was getting very upset and agitated. He eventually hid from her behind a stool saying he wanted to leave. I asked her to write down the details of what was available online and his size as we weren't buying any today. She said "but if he'd just try these on they should fit him.?" I said there is no point forcing him into shoes he doesn't like, to which she replied. "I don't remember getting a choice when I was younger!" I was and still am outraged. I've been shopping at Clark's with my children for nearly 8 years, goodness knows how much I've spent and now I feel like I never want to return. My son is autistic, not something I told the staff because I didn't think it was important. No child should be made to feel they're being naughty and no parent should feel like they should force their child into shoes they hate "just because they fit" especially when they cost £40+! I imagine this is simply a training issue for you but it will have a massive detrimental effect for us as Logan normally loves getting new shoes and having his feet measured and now is scared he will be forced into shoes that hurt him (more psychologically than physically I think.)



This is just one person I understand not the whole company but I don't think they realise the deep impact they have had on my son and how much they knocked his confidence. None of their apologies were actually to him.

The Peter Rabbit Reaction

Food allergies aren't something that affect us thankfully, we are very lucky and I'm very glad about that.  Just because we don't have any allergy sufferers in the family doesn't mean that I can't be upset about the recent furor surrounding the new Peter Rabbit movie where the rabbits allegedly (I haven't seen the movie yet so I'm covering myself with "allegedly" word) fire blackberries at someone whom they know to have a serious blackberry allergy. It is said that it even leads to him having to use an Epi-pen.  Is it just me who thinks this is more than a little dark for a film depicting a talking rabbit?

I believe they are shooting it at someone from Mr McGreggors family (Peter and the gangs long term arch-rival, they consistently steal his lettuces and he wants to put them in a pie.) So ok there is no love lost between the rivaling sides but really who came up with the idea of cute, lovable rabbits purposely trying to cause death by anaphylactic shock?

The film depicts a lot of fighting on both sides, he calls them "vermin" and sets traps and they do a host of other tricks to try and win back their garden.  It isn't all these antics that bother me however as a little slapstick comedy is always fun especially for children.

Thankfully my children won't bat an eyelid at this as the concept of allergies is completely alien to them, but there are many people out there, people I know as friends and those who I know through work at Square Peg Foundation who have very real, very serious allergies.  For these people this is not funny, it's dangerous, terrifying and just wrong.

Many children at age 5 already are fully aware of what they can and can't eat and know what happens when an allergen slips through the net.  They will have vivid memories and probably fears relating to their condition and times where maybe they've had an Epi-pen administered or even gone to hospital. There will be parents who live in fear of their child not pulling through the next attack or even those who have lost children/loved ones because of allergies. 

I know to many this sounds extreme, like I'm making a mountain out of a molehill but I can assure you that if related to something deeply traumatic to you that you wouldn't think that.

If they tried to induce a seizure for a person with Epilepsy or took away a wheelchair from someone without the use of their legs in a deathly situation would it be worse?  Or is the fact that the cute, ickle bunnies shooting blackberries with their slings shots is "fun" ok?  Is it "ok" because most kids won't understand the magnitude of what's happening?

Could the bunnies then in fact do or say anything because "kids don't understand?"  Could they actually be cruel for the sake of it and not because it's fight or flight?

A part of me hopes that this has blown out of proportion but as Sony have offered an apology it seems it's very real.

"Sony Pictures on Sunday night released a statement (via The Telegraph) that it should "not have made light of Mr. McGregor being allergic to blackberries" and said it regretted not being more aware and sensitive of the issue."  Independent Online.

I will admit that I am not joining the boycott and I will most likely take my children to see it, we saw the trailer months ago and Logan loves the cartoon version.  I will however be having a conversation with them about allergies and how dangerous and scary they are. 

Information is power, maybe Sony could have informed themselves a little before spending million of pounds upsetting people.

Check out this blog for more allergy info https://www.intolerantgourmand.com/bg/allergies/704-peter-rabbit-movie-allergies.html

The cracks are appearing

Logan copes really well.
He is doing fine.
He's ok.

This is what I hear all the time.  There are times when I doubt his diagnosis, when I doubt my concerns and myself.  And then there are times when his autism is glaringly obvious, when he doesn't recognize someone he's known for over a year because they had a shave, when he refuses to speak to someone randomly because it's a new environment, or when he's almost reduced to tears because something minor didn't go exactly to his plan.  In those moments I know he is not coping, not fine or ok.

But what do you do when school invariably tell you he's ok, that the SENCO doesn't really need to see you, they have no concerns?  It all sounds great, except Logan invariably doesn't want to go to school, he's started saying he has a stomach ache again before school.  He gets upset that he doesn't get the level of praise that he sees other children getting, not that I think he should get more or less than he deserves but he is driven by praise.

This week I saw a glimmer of hope in the shape of a CAT worker (Communication Autism Team.) Having a diagnosis of autism in Birmingham means that you "should" automatically get assigned a CAT worker once your child is in school. Like anything relating to schools and autism there are the good and the...not so good.  Ours is great, heralded even. People hear of ours from different areas and are jealous. During reception Logan only had one class visit with him, the teachers reported very few concerns and really he was fitting in superbly, not forgetting the fact that his teacher has an autistic son "just like Logan" so she got him.  He liked her a lot.

Fast forward to this school year and he had a visit last week, once again I was told that the school had informed him that there were no concerns.  In the grand scheme of things I guess there aren't, he can read and write at an age appropriate level, he doesn't cause trouble or stand out.  Then I spotted this line in his report, I couldn't have put it better myself:

I need to address it with school but I don't really know what to say, there were lots of other snippets of information in the report regarding his immaturity in emotional/social situations as well as him not being able to express himself. I know it needs to be addressed but I think I need to have a plan, I need to know what outcome I want to see happen next.  Fobbing me off is easy, I need an outcome that I can see and measure so that at the next 3 minute parents evening I hear more than: "He's doing well."

A day in the life, 8th Feb 2018

Earlier this week I took Logan to Clarks to measure him up for some new school shoes.  It was an abject disaster and a complaint has been lodged so I'm awaiting their response before I publicly shame them.  Today his school coat has broken too so he's shoe-less and coat-less in what feels like the coldest winter on record, (I'm sure that's very factually incorrect.) Today he had to wear his trainers in to school, he was unhappy; it's not the rules, he might get told off, his stomach hurts etc.

Oh hi anxiety, back so soon?

Bella once again amazed me with a little nugget of her amazing brain and ability. She asked for juice and I indicated to the part filled cup on the table, she picked it up and peered inside handing it back to me. "Bigger." Yes Bella, you tell me! Don't settle for that little drop of juice when you could have a bigger, fuller cup.

I'm considering reapplying for Logan's DLA (disability living allowance) but after the last two rejections I just don't know whether to bother. He gets on so well at school, he fades into the background, doesn't stand out or fall behind and he masks all his anxiety so much so that even the CAT (Communication Autism Team) see no problems. Don't get me wrong for the most part this is all good but it means we have no supporting professionals.

We shall see, Bella's DLA is also up for renewal in the next few months and I'm not sure I have the strength to attack two at a time (not to mention having a baby in between.)

Hope you've all had a good day wherever you are.

Monday morning blues

This morning was hard, harder than usual anyway. I'm usually really upbeat about autism and how it manifests itself within our family but this morning it took over and broke me down.

It started off calmly, Bella got up happily enough and sang and danced her way downstairs and she even giggled looking at me at the top of the stairs and said "down...stairs, mummy."

Then out of nowhere the tide turned, there were no warning signs other than her iPad dying but that didn't seem to be her main concern.

She got herself into such a state that she was hysterical. Meltdown was underway.

Wearing clothes, any clothes seemed to be the main trigger. The minutes were ticking away before the school bus arrived and Paul and I were planning other ways to get her school as there just seemed no way she was going.

As usual in this situation Logan was having to fend for himself, having to be understanding and considerate. Skills which are really beyond his years and have been his whole life.

Paul and I were kicked and hit as tears rolled down her cheeks. She used us both separately for deep pressure and then during a hug with me she started laughing...and like that the meltdown was broken...like a fever when the medication kicks in...except I have no idea what the turning point was.

She then got dressed without complaint and had a drink and walked out to her school bus as if the last hour hadn't happened.

I don't know if these episodes have a lasting effect on Bella but the rest of us definitely feel the aftershock.

Hopefully she'll have been her usual, happy go lucky self today at school and tomorrow will indeed be another day.

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.

A poorly kind of week

Bella has been poorly this weekend with a high temperature and possible sore throat. That's the worst thing about having a child with communication difficulties it's all a guessing game. When she's poorly she takes her self off to bed and stays there. She is quiet, she gets into no trouble. It's all a bit disconcerting.

The other difficulty is that she won't take medicine at all, and no I can't hide it in drinks or yogurts as she can sniff it out like a hound dog. For years I struggled to get her temperatures and illnesses under control and battled with medical professionals telling me to "use force."  Ha ok, this girl is a force of nature and no amount of being held down and having calpol squirted down her throat would result in anything other than her being sick.

Then one day when we were in hospital being patronised by a consultant  (after the nurses and on call doctors couldn't get close enough to Bella's mouth to examine her toncills) She asked why we don't use paracetamol suppositories....Well because at age six no doctor had ever mentioned such a thing and I am not exactly medically trained. Apparently as parents we're meant to be psychic enough to know what medications are available but not too psychic as to undermine the professionals themselves. It's a massive juggling act.

Aaaanyway suppositories have changed our life. When Bella is really poorly I can usually manage a swift suppository insert during a nappy change without too much resistance and getting proper pain killer in her is a game changer.

SO IF YOU DON'T KNOW ABOUT THEM ASK YOUR GP  😊

#autism