Me and my girl and boy, raising awareness and acceptance of autism

Archive for the ‘disability’ Category

Writing for a reaction can be insulting, Ms Jones

I have a mild love-hate relationship with Liz Jones. Strange because all I know of her is what she writes.

The (imaginary?) rock-star boyfriend, the name-dropping of various (very expensive) home furnishings and clothes that seem to make their way into her daily life, the fact that she loves her animals. It all makes for an entertaining read on a Sunday morning, not least for the readers comments.

She attended a Mumsnet conference last year – presumably getting a very nice fee – and, according to bloggers looked quite miserable throughout and resembled a rabbit caught in the headlights. It was obviously a two-way feeling because she produced quite a vicious article following that – link here – stating that blogging mothers were constricting themselves and mocking what they blogged about. That received some very justifiably annoyed comments, particularly amongst those she’d name-dropped in the article.

Part of me thinks “live and let live”, she’s entitled to her opinions and part of her job is to entice a response, to get the “traffic” to her article, to get the “how dare she?” comments, part of any writer yearns to be recognised and appreciated, after all.

But, earlier this year, I felt she went too far.

She wrote an article defending a politician’s use of a disabled parking space and, not only that, made some very sweepingly offensive comments about the disabled community as a whole, during a time when disability hate crime is on the increase and cuts are hitting hard.

I’m not going to reference the whole article, just highlight the bits that I felt strongly enough about to make a complaint to the Press Complaints Commission:

“I have a lot in common with George Osborne. Not the private education.
Not his views on what turns a man into a child killer. But the fact he parked his SUV in a disabled bay.
When I heard this news, in the week cuts to benefits started to bite, my only thought was: ‘He parked in a disabled bay to buy a burger?’
Because that was the crime.
Not parking in a bay expressly designed for people with no arms or legs or eyes (why are they driving?). Because I do it all the time. I make a point of doing it.

The second reason is that there are just far too many of these squares, a PC PR move by local authorities to prove they are nice people, when they’re not.
Have you ever seen seven paraplegics, all at once, at your local cinema? No.”

There is more, an attempt to firstly justify herself because she is “disabled”, she is deaf and then later on, she decides that she parks in those spaces because she’s a “non-conformist, a rebel.”

As the mum to two special needs children, both with an invisible disability, I felt that her words not only discriminated against those with mental but physical disabilities also.

Her words will only fuel people’s emotions against those who they feel are “getting an easy life” when the reality is anything but.

The disability living allowance (DLA) is not an automatic right, I know of people who have been refused three times because of the severe cuts and the forms are sent out for renewal every three years, it is certainly not an automatic benefit for life. Despite what certain media may have you believe.

Many councils and organisations additionally do not recognise a diagnosed disability until DLA has been awarded so that award letter for someone who has never met the individual is vital.

I wrote therefore to the Press Complaints Commission and my case for discrimination within the article was considered but rejected.

Here’s their reasoning below:

The Commission recognised that the complainants had found the column offensive, in particular, that the columnist had implied that disabled people should not be allowed to drive or live “normally” in mainstream society, and should seek recovery from their disabilities. The Commission made clear that the terms of the Code do not address issues of taste and offence. The Code is designed to address the potentially competing rights of freedom of expression and other rights of individuals, such as privacy. Newspapers and magazines have editorial freedom to publish what they consider to be appropriate provided that the rights of individuals – enshrined in the terms of the Code which specifically defines and protects these rights – are not compromised. The columnist had been entitled to express her personal views, so long as in doing so she did not breach any of the terms of the Code. The Commission could not, therefore, comment on this aspect of the complaint further.”

So, personal opinions seem to be okay – in their eyes – however offensive they may seem, after all, it’s all about traffic and responses in the end, isn’t it?

I’m glad that I – and several other people – contacted the PCC though.

I’m going to carry on attempting to raise awareness and acceptance for everyone within the disabled community, I owe it to my children .

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When an #autism diagnosis is a double-edged sword ..

As many readers will know, T was diagnosed with high functioning autism last week, our second child now officially on the spectrum.

We’ve received the official report already and it’s very accurate, very detailed and although my initial reaction on hearing the diagnosis were to cry, it’s a relief. All those traits which I’d observed and tried to ignore were all part of T, our loveable, stubborn, clever T.

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A diagnosis means (hopefully) that school will now take his need for work above his peer level seriously, it means that (he’s in year 5) we can talk to secondary schools and establish a plan for support. It also means we weren’t imagining the traits and (hopefully) aren’t rubbish parents.

But, it doesn’t change T as a person, why would it? People who knew him before last Tuesday shouldn’t try and pick apart his character and his traits.

Take for example, his football. T’s idea of relaxation and self-calming is to bounce on our trampoline, with a ball, commenting as he’s heard TV/radio march commentators do, it doesn’t harm anyone and it’s his de-stress tool.

T’s obsession from an early age has always been football, at 18 months he could name all the premier league badges and I would have to laminate football pictures/top trump cards so that he could carry them with him.

He’s also incredibly stat-focused, but that’s ok, it’s him and sometimes the conversations about matches and permutations can grate but it’s what he likes and who he is.

He plays in the team that Hubbie coaches and it’s their release every Saturday, playing a game in the morning and then going to watch a local match in the afternoon, it’s their time, their combined interest time and it’s good that they can do this.

One of the other coaching staff – who all knew on Tuesday evening about the diagnosis by email – said to Hubbie “you know, he looks so normal…but I can tell from ….and how he is about ….that yes, there’s definitely a problem”.

A problem? He’s the same child he always was. Don’t try and pick him and his traits apart, he’s the same boy he was before Tuesday.

Please, just accept him.

Some questions and answers – April is Autism Awareness Month – Day 13 of 30

I guess it started as a typical Saturday for us, T and Hubbie went off to T’s game this morning, another local game this afternoon, returning home soaked for dinner time.

D and I have had a crafting day, me being instructed to make gold propellers and other bits out of paper (I’m no origami-ist) as per the Skylanders ship, D supervising and adjusting!

A day with a slight difference in that our clinic appointment for T has come through, loads of forms to fill in and it’s scheduled for ten days time.

So…we’ve had a discussion with T tonight, some parts went well, some not so well but he was smiling by the end.

D was listening in and out and it was a chance to have a basic chat to her about her hospital appointment in twelve days, talk about a busy week!

Whatever the results for both, nothing will change, they are our wonderfully individual children.

I also did a post for fun today, The A-Z of me, click to read.

Here’s tonight’s revisited blog, one that I found it useful to read again today, one that reminds me why I’m here blogging, connecting.


Had a Question and Answer session

I was recently asked to submit some answers to questions posed by a magazine, the questions really made me think and I’ve decided to replicate my answers below.

I’m looking forward to seeing the finished article and hope it helps with both raising autism awareness and acceptance.

Here goes:

1/ About your daughter (name, age), when she was diagnosed with autism and how it affects her everyday life

My daughter is referred to as “D” as I prefer to protect her identify a bit. People may wonder why I publish photos in that case, but I use them to demonstrate that you can’t see/smell/touch autism, it’s an invisible disability.

She was diagnosed within 6 months at 4.5years old, it became very apparent when she started in mainstream nursery that she had autistic traits and luckily the SENco was very experienced in recognising the signs. Having said that, D was unable to function within the mainstream classroom environment and as soon as she received a Statement of Educational Needs, we transferred her to a SN (special needs) school and she flourished from the first day. She’s 9 years old in May and I’ve been blogging for just over a year.

D not only has autism – with its three major traits OCD, lack of social skills, impaired speech and language – but she also has very high sensory awareness (a sudden noise will startle her or she will pick up on noises that others wouldn’t) and severe anxiety around strangers, unfamiliar situations and unfamiliar places. This causes problems when we are out; for example, someone walking behind/alongside her will alarm her and may cause her to bolt (running away very fast with no thought for her safety, she once ran into the path of a (fortunately slowing down) bus. She will also “meltdown” when overwhelmed by either a sensory element or situation she cannot understand, this can be sudden, noisy and occasionally violent. For these reasons, primarily her safety, we use a SN buggy when out.

We are also starting the diagnostic process for my ten year old son, T on the blog. We have suspected for a while that he is also on the spectrum but at the higher-functioning end. This means that he has the autistic traits of needing the routine, of having sensory issues with his food, of social skills but he is working two years above his level at school and on the whole, has developed coping mechanisms. The school he is at has a very positive autism-friendly environment, it’s mainstream but with (probably) 2 autistic children in every class.

2/ On your website you mention how hard it is to know at first glance if somebody has a disability … what reactions have you and your daughter received (negative and positive) that show this.

I’m going to start negatively:
Because autism cannot be seen, you are relying on people to be empathetic, this doesn’t happen. I can understand that, you see a child (an older child) having what you perceive to be a tantrum in a public place, your initial reaction is it must be bad parenting.

Because we also use the larger buggy, people’s reaction is to stare, point and whisper. I have had people saying “she should be walking, she shouldn’t be in that” and once some children called her a “big baby”. I’m not going to lie and say it doesn’t hurt but you do learn to develop a thick skin, my priority has to be my children after all.

It is very rare that someone will ask why she’s in the buggy and I will happily explain her autism and anxieties but that is exceptionally rare.

3/ What are the most common questions you are asked when raising awareness about autism (and the answers!)

I’m often asked “why” and the simple answer for me is genetics, my husband and I made these beautiful children who just happen to have autism. The genetic balls got thrown in the air and they came down as more severe for D than T. I know that both my children had traits from birth, I don’t blame vaccines or diet (some people use a gluten-free diet) or environment. There is no point in me looking for someone or something to “blame”, it wouldn’t help anybody.

I also get asked if autism can be cured. I did a recent blog about “coping strategies” and my response is that. As D matures, I really hope that she will learn ways to deal with her anxieties and to manage them, but will she be cured? No. But she will learn to “cope”. This is where Twitter is so useful. I follow and am followed by adults on the autistic spectrum, some of whom are now parents with children diagnosed. Their insights are so useful.

4/ How does your daughter inspire you and what inspires your daughter?

My daughter inspires me to keep going, to keep raising not only awareness but acceptance. I don’t want to think too much about the future. I can’t imagine her leaving home and being able to live by herself, but I may be wrong. I want her to be able to live in a compassionate, accepting society. Obviously I have my own concerns about her being female and disabled, exploitation etc.

Having dwelled on the above, we have some incredible highs. When D was diagnosed, I was given no expectations for academic milestones. The first time she wrote her name by herself was a tear-inducing moment, I was so proud of her. She still has problems with writing and will use a mixture of upper and lower case but she can do it. Similarly reading, D wouldn’t learn to read phonetically (which caused its own problems with school) but rather by memory. This took a while longer but now she happily reads books, and reads aloud to me – even if the understanding of what she is reading isn’t always there

What inspires my daughter?

Well, she loves drawing, it’s one of her ways of expressing herself.
I’m not sure what else. She’s always saying that I’m her best friend and that’s nice, we might not do the traditional mother-daughter shopping trips and girlie fun but I’m grateful for the cuddles.

5/ How did you feel when you were first made aware of your child’s autism and why?

I was blissfully ignorant of autism or its traits until nursery referred us to a speech and language therapist in the summer holidays just after she was 4. The therapist was asking all sorts of questions about my daughter’s routine, anxieties, special toys as well as her speech and I left the meeting wondering why she’d asked all these questions. The next day I started googling and autism came up. The penny dropped and we knew, months before diagnosis. This was useful in a way because the SENco knew that I “knew” and we could work together, arranging support for D. It’s a very strange feeling being told that your child has a life-long disability, you almost grieve for the child you won’t have and then accept and become determined to help the child you do have. This process started before the official diagnosis so it wasn’t as much of a shock as it would have been, had we not already investigated.

Some people might think that an official diagnosis and “label” isn’t important, it is. To receive a statement and to attend SN school, we had to have a diagnosis. It’s something that doesn’t matter so much to us as a family – D is D and T is T – but as far as the outside world is concerned, no diagnosis, no help.

And now we’re going through it again with my son, but we’re more prepared this time around and against a timescale as he’ll go to secondary school in September 2014.

Background for me:
We’re based in Berkshire but I have readers worldwide. The main positive for me is reaching those parents/carers who are feeling isolated. If I’ve blogged a bad day or a massive positive and they can empathise and know that someone else is experiencing what they are, it’s a bonus.

I used to work as a PA for directors in a well-known insurance company. I made the decision to be a stay-at-home mum after T was born, my husband is self-employed in an ever-dwindling market and we are not on benefits, despite what the coalition would like to portray (mild rant there).

Both pregnancies were normal, both home births. T was born on his due date, D was 6 days early. I didn’t produce milk so both were formula-milk fed.

Here’s a picture of how D sees herself, as a Butterfly, I must get it onto canvas one day:

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Hope everyone’s had a good day, comments/RTs/shares as ever welcomed, thanks for reading Jx 😘

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#WAAD A photo blog for World Autism Awareness Day. This IS autism/aspergers… Day 2 of 30

April is Autism Awareness Month – Day 2 of 30.

Anyone living with/caring for someone on the autistic spectrum knows that the need for awareness and acceptance is 24/7, all year around.

Today – World Autism Awareness Day or #WAAD – is a chance to try and educate those people who aren’t aware of how autism affects carers and individuals.

It’s also a chance to demonstrate that, despite what is portrayed in the media, people on the spectrum aren’t evil monsters but at the same time, highlight that autism is an invisible disability. It’s a big ask to expect people who aren’t aware to look beyond their initial perceptions and judgements.

All the children below have autism/aspergers. All have a life-long disability, they can’t be cured but, hopefully, they will learn to develop coping strategies.

Can you look at these pictures taken today and tell they have autism? All photos used with parental permission.

This is J….playing:

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This is S….travelling on a bus:

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This is L-M…having a drink:

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This is C…showing his Easter choc (I wonder if they’re in his tum yet!):

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This is E…..laughing:

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This is Z….riding a carousel:

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This is E….being Spider-Man:

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Another Spider-Man, this is R:

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This is S…looking gorgeous:

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This is L….handy in the kitchen:

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This is A ….being Mario:

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This is A….looking handsome:

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This is E….looking like a film star:

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This is E….looking thoughtful:

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This is J….another Spider-Man!

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These are T and S….two brothers (love the costume):

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This is T….playing:

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This is B….taking a break:

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This is J….looking cheeky!

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These are cousins J and J….looking very smart:

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This is M, playing with his brother J:

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This is D……with her faithful Bunny:

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This is T….reading:

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These pictures are great aren’t they? But, as I said in a previous post:

The Camera DOES lie:

My daughter is 8 years old. If you saw her in a photograph, you’d think “pretty girl, nice smile” – if you met her in person, I’m sure your perceptions would change.

You see, my daughter has autism or ASD – also known as the “invisible disability”. The autistic spectrum is wide and varies from mild to moderate to severe difficulties.

Autism affects my daughter in many ways but the main three are:
Speech & language difficulties
Delayed social skills
Obsessive compulsive disorder.
She also has delayed motor skills and heightened sensory awareness.

Fortunately for me, my daughter is verbal but when her anxieties take over (which they do if she is faced with a change of routine/sensory skills overload/an unfamiliar situation), she will either bolt (run away fast without thought for her own or others safety) or meltdown (totally emotional and sometimes violent outburst).

I risk assess everything before we travel anywhere – even a trip to the supermarket has to be done at a quiet time and we use her special needs buggy as her comfort zone. Even then a person in the next aisle may look threatening to her or she will be startled by a sudden noise and she will want to leave immediately.

So, that child breaking down in public may not necessarily be “behaving badly” – look beyond your initial thoughts and at the wider picture.

Let’s hope that the coming year brings greater awareness and acceptance for those children pictured above and everybody within the vast spectrum, it’s a wish I’ll be making.

Thanks for reading on World Autism Awareness Day.

J x A very proud Mumma

Phew, it’s the weekend! Fri/Sat 15/16.03.2013

I’m going to gloss over yesterday very quickly, I did a little Pick My Red Nose in keeping with Comic Relief etc. I figured that everyone would be laughing away at – the Simon Cowell marriage sketch, for example – the comedy, far more interesting than my blog!

Yesterday was the culmination of D’s anxieties with regards to the change of routine at school, the unfamiliar clothes that people would be wearing and the jollity of the day. She didn’t enter school well, for the third day running.

But, it was all for a very good cause, by no means am I knocking the school’s participation, it’s our D who couldn’t cope with the anticipation and the build up.

Today was a new day. A good day. Our daughter (D) rushing in to our room first thing, squeaking happily and smiling. Such a relief to see after the last few days, they’d been early starts too. I guess she was relieved.

It HAS been a good day, very much needed. Hubbie and T were at T’s football match this morning – got soaked but won 4:1 – and a local match this afternoon. So it’s been a peaceful go-at-your-own-pace-but-stick-to-routine day, too busy at the shops to even contemplate going out, the rain has absolutely pelted down anyway.

There was a nice moment tonight, when D was between 3 and 6 years, she absolutely loved The Wonderpets – click on the link to go to some information on Wikipedia – a little bath toy reminded me of them, so I asked her if she remembered them.

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She didn’t at first, which was a shame because, well, she absolutely loved them. I remember having to order the boat in the picture (Flyboat) from America for her 4th birthday because it wasn’t on sale in the UK. We watched them every day and I think D’s love of animals stemmed from the programme.

She still didn’t remember until Hubbie and I sang the theme song and then it was as if a switch went on, and she sang along. Lovely! Click here to view the song on YouTube.

I know it’s not that long ago – nearly 3 years – but it seems much longer, so much has happened in that time.

Lovely revisiting it though and I guess it shows that musical memories stay with us.

(Which reminds me, I have an autism linked music review to get on the blog.)

Crossing my fingers (and toes) that tomorrow will be just as calm and then back to school on Monday, not long until Easter holidays now.

I hope everyone’s had a good day, comments/RTs/shares as ever welcomed. Jx 😘 No jokey end picture tonight because I wanted to share this:

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Squease inflatable deep pressure vests – Product Review

Recently we were offered the chance to trial a Squease inflatable deep pressure vest – click here to visit their website.

“Squease is an inflatable deep pressure vest that is hidden away inside a hooded top. No weights are used; hug-like pressure is applied to to the upper body simply by inflating the vest with air.

The vest is lightweight and may be worn by itself or zipped inside a Squease hooded top, making it discreet and mobile.

The vest is inflated by squeezing a hand pump, allowing the wearer to regulate and apply soothing pressure in everyday situations that may lead to anxiety, stress or sensory overload – whether that is at home, at school, or on-the-move.

For people with sensory processing difficulties such as many people with autism, who find dealing with change, busy environments or contact with other people to be highly stressful, applying pressure to the upper body may be calming, increase body awareness or improve attention and focus.”

These two YouTube videos explain how the Squease vest originated and how it works – click here and here to view. These are two separate films.

My first impressions:

The vest is incredibly light when deflated and because it works by squeezing an air pump (which if you have the Squease inside the hooded top option) is very discreet to inflate and deflate. The two pictures below show first a deflated and then an inflated vest.

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How does it work?

Firstly set-up your pressure vest over a t-shirt or vest whilst standing. Fasten the Velcro side-straps so that the vest fits loosely, Squease recommends leaving a gap of one or two finger-widths between the front of the vest and the body.

To inflate the vest, simply squeeze the hand pump until the desired level of compression is reached on the upper body.

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To deflate, press the air release button at the top of the hand pump and the vest deflates quickly and discretely.

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The benefits we found:

D mastered the act of inflation and deflation quickly. I had to prompt her to inflate it when we were out-and-about in a busy environment and anxieties were emerging, but the compression benefit was instant and she likened it to “receiving a bear hug from you, Mumma”.

I really like the idea that the vest can be zipped inside a Squease hooded too, with the hand pump fitting into a pocket slot.

The Squease is available in a variety of hooded top/without hooded top colour and size combinations – click here to visit the online store – and the company are planning to introduce child sizes shortly, but to give an idea of adult sizing, the adult small fitted D very well, the Velcro straps enabling a perfect fit.

The vest (and optional hooded top) can be rented or purchased outright and a VAT relief scheme is available:
“If Squease garments are purchased for personal or domestic use by a chronically ill or disabled individual or are made available to a disabled person or persons for domestic or personal use, then we may supply the products at zero-rated Value Added Tax (VAT).

When you purchase an item online questions are asked through the checkout process assessing whether VAT is required. If you wish to pay by cheque or bank transfer then please fill out the form on the right and post it to us or email it to us.”

The company also offers a “Trial
before you buy scheme” – click here for details.

Would D and I recommend it?

Yes, definitely. So many weighted products are extremely beneficial but naturally extremely heavy, the Squease is lightweight and discreet.

I like the idea of trialling one first too.

Would we buy one?

Absolutely.

I’ll end with some pictures of a very happy D, wearing the vest. She instantly relaxed and felt the benefits and it’s something I’ll be looking to purchase once she’s finished her current (rapid) growth spurt.

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Thanks for reading, comments/RTs/shares as ever welcomed.

Disclaimer: we were sent a Squease vest to trial for a few weeks. No payment was received and our views were our own.

Proud of her… Saturday 02.03.2013

Today has been a day of new experiences, of challenges. I’ve come through it relatively unscathed (armour slightly chinked) and immensely proud of my girl.

This was morning was Arts and Crafts club – an initiative run by MENCAP – only today it wasn’t Arts and Crafts, it was a dance lesson. D knew that it was different today and up until this morning, she’d been looking forward to it. However, anxieties kicked in before we left, continued on the bus journey and when we got there. It took about 5 minutes to get her into the room and I joined the other mums, leaving D curled up in a chair with a volunteer next to her. It didn’t look hopeful. I sneaked a peek after about 5 minutes and she hadn’t joined in, but at least was watching, still with a volunteer with her.

The joy therefore, a few minutes later, when the volunteer came out and said “she’s fine, she’s joining in and she said to tell you not to worry”. This prompted a few sniffs from me and the other mums….how cute! (D later told me that she’d meant to say that she wanted me to come and watch, I guess our telepathy wasn’t working today)

Further proud moments when we were all invited in to watch the children perform the dance they’d been learning, wonderful to see them all, with their varying disabilities concentrating but obviously enjoying it. Huge claps all round.

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There were 6 children there, so it was a manageable group and one of the children has a birthday on Monday so there was a birthday cake, candles and the happy birthday song.

It’s nice to get together with other mums of SN children, chat and share experiences. The girls far out-numbered the only boy today, which is unusual for SN settings.

A trip after that to the opticians (specialising in SN children) to pick up D’s new glasses, we were very early for the appointment as I had absolutely no idea how long it would take to walk there but, being the brilliant chappie that he is, he saw us immediately. A slightly dicey moment when D realised she’d left her bag in there but, she very calmly went back in with me and it was retrieved.

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Unfortunately there was no direct bus home and we had to travel into town, to go back out again. Either that or me pushing the buggy for 1.5hours up and down hills…yep, a bus seemed preferable.

The bus journey promoted another anxious moment when D read the time on the screens on the bus and realised it was 12noon and that’s when we have lunch – on the dot, everyday. There was a bit of “I’m starving, I’m wasting away” cue distraction time with my phone.

Town was busy, very busy. Luckily D didn’t notice the looks etc – click here for post. One very rude woman in particular but you get used to it *buckles up thicker skin*. I just wish it wasn’t like that.

Glad to be home this afternoon after a busy day but she did very well, both with the change to Arts and Crafts, the leaving behind of her bag and the change to the lunch time. Well done D!

T’s had a good day too. After the disappointment of both the Saturday and Sunday matches being cancelled last week, his time won 2:1 this morning and the local team he watched this pm won their game too. A tired, but happy little man tonight..until he was reminded about his homework to be done tomorrow, it’s no fun being bad Mumma at times like that.

But the positives have far out-weighed any negatives today and that’s a thumbs-up for us! I hope everyone’s had a good day too, comments/RTs/shares as ever welcomed, thanks for reading Jx 😘

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