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!

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?

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

Lucky number 7!

Bella is seven, how this happened I don't know. Having a child with an additional need means that age doesn't often run in the same linear pattern that it does for regular kids. On the surface, physically Bella is every inch the 7 year old. She is tall and lithe and would make a fantastic dancer.

Emotionally she falls way down on the scale, probably below the age of a toddler. She doesn't recognize (or appear to recognize) emotions in people although she can differentiate between them in books. Somebody crying has no affect on her, if you have fallen down and broken your leg but she wants you to open a packet of crisps...let's just say you'll have opened the crisps before calling for an ambulance.  Intelligence is very hard to gauge, she remembers information she has seen or read and can regurgitate at her own will (note that's her will not anyone elses!) Is this intelligence or more a party trick? She knows a quadrilateral from a rhombus and can go onto a laptop internet browser and find exactly the precise Youtube video she wants in seconds...I think that's pretty smart.

So yes, now she is seven and growing up fast. She is taking teeny tiny baby steps every day and gaining independence with it. I'm trying to help too by letting her spread her wings a little, but it's scary. Having a flight risk who runs like Usain Bolt is more than scary it's bloody terrifying.

We'll get there, she'll get there. Here she is on the big day: