Photo Shoot

**please note- none of the photos used in this blog are the professional shots- but were taken by the wonderful Ellie**  

Team ‘Project Brailler’

Last Sunday, we were invited by Project Brailler to take part in a photo shoot for a calendar which will raise funds for three parent-led charities for Visually Impaired Children and their families:

 Project Brailler. Buying Smart Braillers for VI kids to enable literacy 

 Common Sense. Promoting independence through mobility.

  Moorvision. Supporting families in Devon with VI Children. 

The shoot was in Bristol, so we left the house at 9, and close to our arrival time (11am) it became apparent that we were snarled in Bristol Half-Marathos traffic. However, Waze and Iain make a phenomenal navigating team, so we found the studios (amazing place- I’m desperate to go to the cafe and studios underneath!), and parked outside. 

After trawling up some stairs (and explaining to Lucas that the lift wasn’t working), we went through some office rooms to a small studio with a ‘green room’ next door. 

We met the indominatable Kristy from Project Brailler and the heart-melting LG, the inspiration behind PB.

Kristy and LG

It was a brilliant set- up! A make-up artist (who gave Isla a brilliant Harry Potter Scar!), and two photographers.

Kristy and LG, both with modelling experience, showed us all how it was done.

Lucas and Isla had decided that they ‘needed’ our little Chug, Star in the photos, and each other, but it turned out that Star was the only one who didn’t have issues! Lucas has Petit Mal seizures caused by certain clicking noises, and unfortunately the cameras caused two which rolled out in quick succession. He was given emergency Meds though, and was helped brilliantly by Tony (one of the photographers) to acclimatise himself to the camera noises, and was able to use his interest in photography to help himself manage. 

He then took to the white paper studio with Isla, whose avoidance-type of ASD actually caused us bigger issues. She’s got really upset and we had to regroup. Lucas stepped up brilliantly though and posed for some single shots.  

Lucas- photographer and model!

 Isla then, after some careful discussions decided she would take part, but actually it wasn’t a great decision- she was torn between being desperate to be included and be with Lucas, yet she couldn’t quite manage to smile or look at the camera at all!   

We then stepped back and watched as more amazing families arrived and took their turns in the studio. Some of the families we had ‘met’ online as part of an amazing ‘VI- network’, some not, but you had the feeling that every family had been through its share of difficulties, yet each was incredibly supportive and open about their experiences, inclusive of all the children present- VI and siblings, and everyone rallied to help each other have the best experience they could.

We had taken the majority of the Common Sense Children’s Cane Bank with us, and were thrilled to loan out 5 new canes! In case you don’t know- long white canes aren’t given early enough, long enough, or often enough in the UK- so we buy them from America and lend them to any child who would benefit from them. 

My absolutely favourite part of the day was 4 year old ‘D’, who was given a cane for the first time, and said 

“With this cane in my hand, now I can run on my own”

If you would like to donate to our Cane Bank, please do so here!



After a mostly-successful photo shoot we joined Kristy and her beautiful family for a pizza lunch, and Lucas and Isla gave LG mobility lessons!

  

Lucas, Isla and LG. Independent travel!

I don’t yet have details of the calendar, but this was the first of two shoots for it, and having met Team Project Brailler, I don’t doubt it will be gorgeous, cool, funky and inspirational- so please don’t commit to next years calendar yet- wait a few weeks, I promise I will share details as soon as I can!

Love Sarah 

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School Rollercoaster

 This is more about the smallest Murray who is having one heck of a time settling into a brand new Junior School. She moved from a small, supportive infant school, where her fierce (possibly suffocating to the other girl at times) friendship with one girl acted as a crutch or safety-net to aid her socialising difficulties. We chose a brand new Academy on a bit of a gamble really- were thoroughly impressed with the ethos, the Academy Trust, the fabulous facilities and the head teacher. The class sizes are very small (up to 23), and the intake is phased- so there’s only a year 3 this year, and Isla will always be the oldest year group in the school, setting rules, taking on responsibilities and so forth, which is right up her street!

Previously, I blogged that things weren’t easy- it was the end of the summer, and her anxieties were pushing her meltdowns and behaviours through the roof.

She’s still on a very high level of explosion and anxiety, she’s not sleeping, and is often playing alone, but we are seeing really positive, supportive steps from the school which I wanted to share:

Isla is 7, and is only just getting her ASD formally diagnosed. Choosing a junior school was tough- she’s gifted academically across the board, but has massive anxieties, can’t do social stuff at all, and veers between being wholly compliant (too compliant- didn’t tell when a girl slapped her in the playground), and acting out by becoming mute, not-joining in, screaming and needing to be dragged off me in the mornings.

Since starting at the new school she’s demonstrated her high level of support needed right now (hard to watch, but pleased they’ve seen it), and with no extra funding or diagnosis yet, they have given her almost FT 1:1 support, engaged the teacher fully and are offering for the 1:1 to attend a course with us, even though their small staffing team can’t currently support the cover so people have volunteered their time. They  have also got us the first Ed Psych slot they have, to enable a long-term support package to be put in place ASAP. Communications from them have been superb, thoughtful, respectful and taking our situation seriously.
We are also doing lots st home right now:

We start our first session on the National Autistic Society Early Bird Plus course in the morning (a course which comes highly recommended by Laine at A Touch of the Perks), and I’m both looking forward to it, and a little nervous it won’t give us anything new.

I’m also going to attend a course here next week:


And we are also meeting with CAMHS (Children’s and Adolescents Mental Health Services) to attend a pre-treatment session with Isla- she is due to start some sessions with a behavioural nurse (I’m guessing CBT type work?).

So- lots going on, and to be frank it feels like we need all the help we can get right now! I have implemented lots of pecs/feelings type charts and reward systems and so forth- rekindling my love with my laminator, so will share some of that on subsequent blogs as I know the sight of someone else’s lovely toolkit can give you a kick up the bum to rehash yours a bit. I also know that as with most of our ASD kids, all of these systems only work for a little while, then you have to reinvent the wheel yet again, which is exhausting!

I wanted to share with you this author: Tania A Marshsll,  who was recommended to me by an Autistic mother who also has a son on The Spectrum. I feel that I have a handle (mostly) on Lucas’ ASD, yet Isla’s still feels completely alien. I have heard the phrase “if you know one child with autism, you know one child with autism”, but there is now a body of research into ASD in girls, and it does seem to present so differently that I bet we aren’t the only ones treading water a bit.

www.aspiengirl.com  

Tania had devised a toolkit for assessing ASD in girls:

Here are signs to look for with  pre-school age girl,

And here for older girls.

I’m also just beginning to think about supporting Isla through her diagnosis journey in terms of what information she needs, what is appropriate for her to share with peers and so on. Our family is one of disability and difference- she strives to also be different (special?), so says that she wants an ASD diagnosis, but it feels wrong to encourage that idea- that if/when she gets a label she may then use it to define herself. We have joined the excellent library at Cerebra and have chosen a book each to borrow about ASD, so will be offering our reviews on here shortly. They have an excellent selection of book and sensory items, which you can borrow free-of-charge, and the criteria for joining Cerebra seems more flexible than it has in the past- an ASD diagnosis is enough now.

Any photos, blogs or comments on behaviour strategies that you would like to share would be greatfully received, or any experiences of ASD in girls.

Love Sarah

#ASD

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Murraywarts Cup!

  

  
Before I was a parent, I always said that I didn’t like ‘bribing’ children with reward charts and incentives, that it wasn’t good for them- it would teach acceptable behaviour could be achieved only by rewards, that there was such a thing as ‘acceptable behaviours’ at all…..

but with our two, I have to ignore all of that!

Experience has taught us a hundred times that the Murray chids only behave in a way that doesn’t make us cry when bribed! They need concrete patterns of behaviour and language taught, modelled, demonstrated. They need to know that there is a good enough reason for them to think outside their own ego’s. They must see the benefits from doing as we ask them.

We also know how easy it is to get stuck in a rut where we feel we are nagging and being negative.

With this is mind, and our circumstances making family life even more complicated than usual (I have a chronic health condition that renders me in bed or in hospital very regularly, and Iain as a result is trying to work from home setting up a business that fits around all the care he has to offer us all), we wanted a plan for the summer holiday. A plan that mean nobody got killed!

Both kids are avid Harry Potter fans, so it seemed a good bet. We discussed between ourselves whether it was better to encourage team work and have us in matched houses, but both chids are on the ASD Spectrum, do they’re not really team players!

Thus, “Murraywarts” was devised. We each picked a house-  Isla and Lucas surprised us by picking Slytherin (Isla), and Ravenclaw (Lucas), Iain stole Gryffindor which meant that I (quite aptly as I have Brittle Asthma) got Hufflepuff.

Through the summer, we had an “eating meeting” every dinner time, and awarded each other points for everything that we had done well that day- helping each other, being kind, making food, tidying up, coping with ‘tricky things’ (new experiences, frustrations, sensory overloads). The only time you lost a point was if you hurt someone. I lagged behind most of the summer, which was bittersweet really. I was ill in bed scoring none, or doing all the chores and care and scoring lots. Lucas was consistently a high scorer- he has grown up so much, manages his teenage and medical hormonal shifts so well, and took a very caring role with Isla and I. Iain scored well when I was in bed but poorly when he was working (the irony!), and Isla fluctuated madly day to day, which is a fair reflection of how she was feeling this summer- terrified about starting a new school, worried about me, her love/hate relationship with Iain (they are so similar!).

The final scores were very tense.  We discussed Isla’s inability to cope with not winning, but decided it would be really unfair to Lucas to not recognise all he had achieved, and also to Isla to let her win if she hadn’t earned it, so at the end of the summer Lucas was First, Isla was Runner Up, and by chance Iain and I were joint third. Isla took it badly- she had the mother of all meltdowns, but she did calm down, and Lucas was a truly gracious winner.

Today was our celebration, with prizes, a movie bonanza (Chamber of Secrets and The Prisoner of Azkabhan), cakes, costumes, wands and lots more. Lucas is now fast asleep having had an awesome day, Isla is awake fretting about school, but has declared our Murraywarts day “perfect”.

Here are some photos of the day:

 

Isla Potter

 
 

Bad Acting! (forgive the Quirrel turban please)

 
  

The presentation of the cups!

  

Home Made Harry Potter Keyrings

 
 

Harry Potter Sweets!

 
 

Which weren’t so great- Vomit Bean!

 
 

“Booger Bean”- he was very brave!

 
 

And Worm Bean!

 
  
 

And our Winner!

 
I ponder the effect this style of parenting has. Am I teaching them to do things only for rewards? Am I spoiling them? Will they remember this? Is it worth it? But it’s ok, because I found a trite, slightly-nauseating quote on Pinterest that makes me feel better!

 

The Very fact that you worry about being a good Mum means that you already are one!

 
Love Sarah xx

p.s- I can’t submit this without telling you that the mess in the background isn’t our mess, but collections for the refugees in Calais. I can bare my soul and discuss my children’s diagnoses, but I can’t let you think we’re really messy!!

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#backtoschoolweek

Inspired by the fabulous #backtoschoolweek by Through Scarlett’s Eyes, I wanted to share Lucas’ week with you.   

Lucas (13) attends a weekly boarding school for Visually Impaired Children. Even saying that makes me feel guilty and fills my throat with a lump, but it was, and is, the right decision.

Lucas has Septo-Optic Dysplasia,  is a full-time Braillist, and he also has unique learning needs- he has Autistic Spectrum Disorder, a high IQ, but a very uneven cognitive profile- he is Gifted & talented musically, has IT skills that blow most adults out of the water, and has an edidetic memory for facts, yet cannot retain information read via Braille, and is operating at a Key Stage 2 level in maths, literacy and humanities. This made his relative success in mainstream up to year 7 a massive achievement, and remains a struggle even in a setting which caters for special needs.

However, his school has risen to the challenge, and mostly now gets it right! Lucas has a form group of six children – three of whom are also Braillists, and for the most part he learns at a Keystage 3 level, although he joins the Keystage 4 group to study Radio Technology, and even hosts his own show on VI Radio. He also has a teacher come in specially to teach him Braille Music Theory and harmony. He has TA support when it’s needed (he lacks Executive Fuctioning Skills ) but because the lessons are geared specifically to VI children, he doesn’t need a TA sat beside him providing a commentary and interpretation of lessons the way he did in mainstream. He also gets ‘pushed’ in his areas of difficulty with expertise and knowledge which we struggle, and his mainstream school certainly struggled with: he has Sensory Integration Disorder so needs an OT with experience to provide a Sensory Diet, PE teachers who know how to present sports in an accessible way, books in Braille available all the time, science lessons that demonstrate chemical reactions in a non-visual way, maths teachers who have resources immediately available to physically teach concepts, speech therapists, physio’s, and rather than having a Qualified Teacher for the Visually Impaired come in once a week and advise TA’s and teachers, every one if his teachers is a ‘QTVI’.

It isn’t easy. That’s an understatement really. He gets a taxi and a medically trained escort arrive at home at 9.00 on a Monday morning which takes him 2 hours to his school, and he returns at 3.00 on a Friday afternoon. He’s still my baby. Almost as tall as me, but my baby nevertheless. The week leading up to him going away was pretty heart breaking. He kept getting snappy and aggressive, he kept dissolving into tears about “leaving you guys”, and asking how he could forget about going away- to which the only answer really was distraction. Sunday evening, we finalised his packing (very stressful!), and he just couldn’t hold it together. Got him in the shower- heard him sobbing loudly, and Isla (7) and I were on the landing outside sobbing just as loudly, getting it out of the way so he couldn’t hear us. Bedtime came- tucked him up, reassured him hundreds of times that yes this bit is hard, but that transition is always the hardest, he loves ‘his place’ when he’s there, we can ‘FaceTime’ as much as he wants, and if he ever needs us, we will get in the car and drive down immediately to see him. Isla then launched onto him and wouldn’t let go, eventually to be calmed by cuddling one of his teddies sprayed with his aftershave.

Next morning- school run from hell- dropping Iain at the station, coralling dog, Lucas and Isla into the car (both sobbing/shouting alternately), drop Isla at school- have to have her pulled off me screaming by teacher and TA (a whole new blog post needed!),  back home to wait for Lu’s taxi. Repeatedly double-checking packing for the numerous Meds, gifts to unwrap the first 2 evenings, ‘patronus’ card made by Isla, ‘fidgets‘,  four Bop-It’s, electronic devices, Chargers, etc.

  
Escort arrived and after a big squeeze, Lucas visibly ‘pulled himself together’ and set off. I fell apart a bit after he’d gone! Later that evening Lucas emailed to say he didn’t feel like Facetime as was a bit sad, but that he we ok, so on Tuesday we had a brilliant FaceTime, I was beaming ear-to-ear, and he seemed to have totally settled back in!Yesterday he appeared in his taxi smiling, tired and constipated (gut motility issues are exacerbated when he’s away), but happy, settled, confident and already a tiny bit more grown up. He is giggling at ‘in jokes’ between him and his friends, chatting about his new tutor, telling us about an evening trip to The Moors, and full of beans. When questioned, he has given his first week back 7/10 overall, which I am more than happy with!

  
Deciding on a special school setting, especially when it means he boards was immensely difficult. We trust not only his education, but his care, both physically (he has life-threatening health conditions), but emotionally to other people. Even harder as we spent the first 12 years of his life having to take total control- finding our own doctors, writing care plans, fighting educational provision, and so on. However, when Lucas sobbed yet again after a too-fast-paced day at mainstream that he was “fed up of being the only blind one” we felt we had little choice. The school worked hard with us on a phased transition over an entire school year, the care staff listened to our endless lists of what he likes and doesn’t like, the medical staff liasled directly with our team at Gt Ormond street, and our boy has gone from strength to strength. 

He comes back demanding ‘boy spray’ (deodorant), using swear words, arguing that his bedtime should be later- he’s challenging boundaries in a 13-year old ways instead of being compliant and too-Young! He talks with delight about trips into town and other outings he wouldn’t dream of consenting to with us, and  is actually telling us about his lessons for the first time. 
It hasn’t been without its teething problems, of course, and there are things we are working on changing, but the decision we made has been, for us, absolutely the right one- Lucas fits there, it’s where he ‘belongs’, and whilst we miss him dreadfully, and he misses us a little (he’s a teenager!), he comes home less stressed, more grown up, and happier. 

For any parents pondering whether boarding is a possibility- my advice is to check it out, think with your head not just your heart, and believe that if you find the right place, it can work!
Love Sarah (looking forward to a whole weekend cuddling my somewhat reluctant big boy!)

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Crossing Problems!

  
Lucas and I went on a mini-adventure yesterday. We visited Pokesdown Station to look at trains *yawn*.

We had a difficult time trying to cross the road outside the station. He’s an excellent independent traveller, but the crossings were unsafe. 

He has written this complaint to Bournemouth Borough Council:

“Dear Council, I am a blind 13 year old boy. Yesterday, we were crossing Christchurch Road to get to Pokesdown Station (opposite the green), and the pedestrian crossing stayed green for a few seconds only, meaning it was very unsafe for me to cross. The crossing also has no beep, so the time taken to feel the tactile cone means even less time to get over the road. Both the crossings had the same problem! Can you get someone to have a look at the crossing and see what that can do?

Thanks,

Lucas ” 

Looking forwards to their response!

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End of summer

Just read this troubling, but very real blog on Huffington Post 

“Back to School means back-to-hell for Too Many Kids.”

  
I have Isla going to a new school tomorrow, and it doesn’t feel like the right time. She is set with uniform, bags, labels, cuddly gift arriving today, transition days completed (sort-of), and we’re writing her Morning Routine today as soon as school give us who and where details. 

She has, however, started acting out even more- regressing with a baby voice, crawling on the floor, she’s not sleeping, and yesterday she developed a stinking cold that might just throw everything out the window if her asthma kicks in, meaning she can’t start tomorrow. 

Our military operation is in place from home, but school have so far done little to help. We still have no formal recognition from the school re her diagnosis, persuing her ECH Plan, or even how they will manage friendship support for her (they put her in a class with NONE of her peers, even when every other professional, and Isla herself stressed how vital it was for her), and we are floundering in a pit of worry right now. 
I know we’re not the only ones. Facebook groups I’m part of for kids with SEN are full up these last few days with parents managing this huge load on our own, with no help often from our schools. The summer break can cause so many disruptions for SEN children, and it’s time to recognise that our schools are failing them by not getting in touch with us in the last week, checking plans are in place, our kids are fully informed about their teachers, TA’s, routines, etc. Expecting some SEN children to just put on a new uniform and turn up on the first day of term isn’t fair! 

I am not a negative person, I don’t expect the worst, but I do know that just shoving Isla through the front door of a new school tomorrow won’t be pretty, and when they say “She’ll be fine as soon as you’re gone” could mean 1) no she won’t, she will cry lots or 2) she will hold it together, pretend she’s fine, then explode or implode when the day is done.

The new school have approached us seemingly as being over-protective parents, choosing to say “we know children”, not hearing our response which is “with all due respect you don’t know ours”. They chirrup “let’s not create a problem that might not exist, clean slate etc” which undermines Isla’s very real problems and leads to us feeling ill prepared. 

As a family with 2 ASD/SEN children, we prepare everything and it’s tiring, hard work, keeps me awake nights. When our schools disappear completely for 6 weeks, and our borough SEN departments do like-wise, then they are letting us all down- parents, and our children. It’s an antiquated system that needs to change, and it makes our SEN-parents job even harder. 

Check out some of these awesome blogs and sites if you are also feeling alone and scared right now. They’re all ones I follow:

Special Needs Jungle 

A Touch of the Perks

Dinky and Me

Revelations of a Slummy Mummy

Chaos in Kent

Please comment below with suggestions of other blogs. It’s nice to feel part of a community.

Good luck these next few weeks- we’re all in this together! 

Love Sarah x

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Mad about the girl

   

     

Today’s blog is really personal. It’s also not really about Visual Impairment, but about my daughter Isla who is 7. Yesterday, after years of questioning certain behaviours and moods, struggles with school and social environments, we finally spoke with a developmental paediatrician who has confirmed to us that he believes she is almost certainly on The Autistic Spectrum, and has anxiety, developmental and separation issues.

It’s now that familiar feeling of partial relief that we aren’t imaging it, that she’s not ‘trouble’, and also a great sadness. Not that she is on the ‘Spectrum’ so much (she’s actually in the majority now in our family), more that her life may well be difficult, troubled, complicated. The worst feeling ever is when your 7 year old says “I hate myself”.
I’m really hoping that this is the chance of new beginnings though- she’s to start a brand new (Junior School), and now we are ‘in the system’ we have a higher chance of getting support, advice, and provision to hopefully lead to a happier girl. 
This was her today. No hint really about the fact that she barely slept last night, she was in such a tantrum yesterday that she slammed her own hand in the bathroom door hinge. No hint that she has been having a ‘settling’ in period in her new school for 3 days, and has been the only child who was unable to say ‘goodbye’ to her Dad and have him leave the building. No hint that she has spent her time not at the school shouting, crying, swearing, being rude, defiant, juxtaposed with hugging us so tight it hurts and refusing to let us go. No hint that she screams that she “wants to be a boy”, and we had to choose the new school partially by how relaxed they would be about her wearing the ‘boys uniform’.  Notice however how she won’t look at the camera- she asked for all the photos in various poses, but was facing herself in a mirror and couldn’t drag her eyes towards me for the pictures. The above photo is the one I’ve chosen to share on Facebook, but this one is more accurate, I guess:

  
She is amazing, funny, loyal, clever, has great attention to detail, writes beautifully and has stunning language. At times it feels like she is almost an adult in conversation, yet it’s matched by tantrums, tears, hurting herself, hurting us, loving us fiercely, yet pushing us away with all her might.

Our future is definitely not blighted by our diagnosis, but it is time to ‘get real’, and decide that she will have to choose her own path, and our biggest job is ensuring others let her.

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