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.

Monday, 12 February 2018

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

Sunday, 11 February 2018

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."

Thursday, 8 February 2018

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, 5 February 2018

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.


Wednesday, 10 January 2018

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