Saturday, 9 March 2019

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!

Saturday, 2 February 2019

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 😊

Sunday, 20 January 2019

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?

Friday, 4 January 2019

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?

Friday, 21 December 2018

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

Thursday, 22 February 2018

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

Tuesday, 13 February 2018

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.