Putting the fun into special needs awareness with Square Peg Clothing: A REVIEW

I'm not normally given to sporting slogans on my chest, or logos, or any words at all in fact.  Unless I'm out running, and that could be because many of my T-shirts are ragged remnants from the 1980s that I can't bear to part with.

But I've noticed a new thing:

Lot of companies selling T shirts and other stuff designed to raise awareness of special needs.

But most of them are pretty naff.  The colours are bad, the shapes are unflattering, and the slogans make me cringe.

And then I found Square Peg Clothing.  It's a not for profit family enterprise based in Sutton Coldfield that produces the cutest range of T-shirts and sweatshirts for children and adults.  Their logos certainly put the fun into special needs awareness!  And the prices will put a smile on your face too, as they start from just £10.

So I begged for a couple of items to review to celebrate reaching another milestone on here, and they very kindly said yes.

This is what they sent:


The grey one is mine!  Promoting autism awareness for my son and also possibly for me, since some people think I have Asperger's Syndrome too.  I love it, it's soft and snuggly and warm and comfy, everything a sweatshirt should be.  I hope to be wearing it for years.  No photos though.  I've posted quite enough selfies in recent weeks...

So where better to try them out than our Saturday social club where we could share them with other special needs parents?

Smiley was VERY pleased with her new sweatshirt!


And it survived being chewed, washed, tumble dried and still looks fabulous.

Autism Awareness  


It seemed like a good idea to post this for autism awareness month in April, but not everyone agrees with it, and some won't like the clothing featured here either.   I actually think that more autism awareness is needed.  There are still people who have not heard of autism, and there are plenty more who don't understand it.  I would be one of them, at least in part.  And it's very hard to accept and embrace something that you don't understand.

For the next 30 days there will be lots and lots of stories and pictures about autism, inspiring and entertaining, dull and serious, sickly sweet or angry, depressing or scary.  I'm guilty of writing stories like those too.  So why not have a laugh at it all?  Don't they say that laughter is the best medicine?  I bet they do at Square Peg Clothing.



They remembered!


And I want to remember that they remembered, so that's why you're getting this photo today.

You see my children rarely watch TV or listen to the radio, and they've mostly been at home for the past few weeks, so I think they did quite well to remember Mother's Day.

Or it could be that they want something....


School refusal and some reasons to be cheerful

In other homes, there are children getting up, having breakfast, going to school, playing sport, finishing their homework and doing it all again the next day.  But not here in special needs land.  There has been barely a day in recent weeks when both of my younger children have gone to school.  Smiley has had some undiagnosed problem which makes eating and drinking painful, while my son has just been unable to go to school.  I still don't know why.  I've tried everything: schedules, reward charts, bribery, pleading, you name it.  Nothing has worked.  Now I just want to know why.  And if anyone has some suggestions on how to get a 12 year old boy to (1) work out what is bothering him, and (2) explain it to me, please don't hold back!

Anyway I've scratched around and found some reasons to be cheerful, so here goes:

Back at school


Thanks to the magic of Solpadeine, I finally got my daughter fully rehydrated yesterday and eating small meals.  Shoppers in Lidl were startled by a sudden burst of laughter in the aisles.  I was delighted.  And so I sent her back into school this morning, just for a half day, just to see.  The verdict?  She was a little quieter than usual, but ate and drank well.  In the meantime I got to go for a run and wash my hair, which it badly needed!


The Wet Room is Go


Finally after months and months of choosing builders, swotting up on PEI and COF ratings (durability and slipperiness) and generally panicking about getting ripped off, I have chosen a builder,  a start date has been fixed (Monday) and the tiles have been bought.  By me, this morning!  Showering Smiley will never be the same hassle again...


The Little Things


From chocolate and coffee, to the scent and glory of the early spring flowers defying the odds and the Irish weather in my neighbours' gardens, there's always something to take my mind off special needs land.  Having my son at home means lots of interesting conversations about topics like black holes, nano-technology and possible uses for scorpion venom - a potential cure for cancer, in case you're interested.  You see if he doesn't go to school, all his consoles and his laptop are locked away until 4pm, and he accepts that.  He understands the need to learn during school hours, so that is what he does, with a bit of direction and frantic searching for ideas from yours truly.

Feeling better


Despite all this, as Smiley got better, and with the support of all my friends, I began to feel better, and now I'm well out of the black hole that I was in a few weeks ago.  I hope to stay away from that grim place for a very long time...


Reasons to be Cheerful



The perfect panini

Paninis are a hot topic in this house, served warm.

They are my son's staple meal in the middle of the day, when he is here.

His aspergers means that he can be both very particular, and very predicable.  Organising his home life in this way appears to help him feel calm, loved, and comfortable, especially when his cushions are arranged correctly!  For me, this is both good and awkward.

Every day at lunch time when I ask him what he wants, the answer will be the same:

"A panini of course!"

With ham.  But that goes without saying, apparently.

Knowing what he's going to want is useful, it makes shopping easier, and I don't have to plan lots of exciting sandwich fillings or fancy pasta salads.

But not any panini will do.  They have to be Lidl Paninis, each filled with one carefully folded slice of premium ham.  Sometimes this can involve visiting several local stores if it's one of those days when there's been a run on paninis.  Why does this happen?  Is it weather related?  Sunshine = thoughts of Italy = desire for paninis?  Or something.

In the search for the perfect panini, my son has now decided that more exacting specifications could make his dining experience even better:

MAXIMUM STRIPE-AGE

PERFECT HALVING


You might call it the Panini Code.  But just like Barbossa, I plan to treat them more like guidelines

For my sanity, you understand, on days when the knife slips, or the stripes are weak and weedy...



My life in books

With no TV, books defined my childhood, but my reading habits went downhill from there.   I read War and Peace aged 11 for a bet (50p from the parents).  I read Joseph Conrad on a beach in Sri Lanka in my late teens.  But as time went on, and life got more challenging, I wanted the opposite from my reading matter.  So as my friends attend book clubs and read the latest Booker nominations, I'm reading teen fantasy fiction.  It's all about entertainment and escapism now!

And sometimes I can't find the energy or focus to read anything longer than a blog post.

But back to the past, and since I've previously written about the books I love, they will be excluded, as will everything Middleearth-related, as some of you *may* know that I have a bit of an obsession with the Lord of the Rings.

So I've selected a stand-out book from all the decades of my life so far.  Stories or memoirs that have stuck in my head even though I may not have read them for years...

1.  Childhood


When Marnie Was There by Joan G Robinson

This is a story of a friendship between two girls in rural Norfolk that is not what it seems.  But it is the otherworldly atmosphere and the loneliness and wildness of life on the sand dunes and marshes  that I remember.  I borrowed the book many times from the local library, but never bought it.  I tried to get it later, but it was out of print.  Now the story was been rediscovered and is being made into an anime by Studio Ghibli, which means that it will be amazing, according to my son.  Who knows, we might even go and see the film together!

2.  The Teen Years


Rogue Herries by Hugh Walpole

Much of the time I could be found wading through all the books that my parents had already bought.  Including this one, the first of a series of historical novels set in the Lake District, where we holidayed every year.  It also inspired me to write my first book, sadly abandoned after the first 100 or so pages..

3. My 20s




Well you can see how well-thumbed this is: I was just fascinated by this story of the dark side of life in Berlin.

4. My 30s


Trainspotting by Irvine Welsh

I have Smiley to thank for discovering this book: I was stuck in hospital waiting for her to be born with nothing else to read, so Trainspotting will always remind me of the events that changed my life for ever.  But I loved Welsh's spare style, similar in ways to Roddy Doyle, another favourite author.  He writes like an artist who can capture a face with a few strokes of a pen, and yet the image is burned in your memory,

5. My 40s



One of the most powerful books that I have ever read and re-read .  Especially as I was in College in Manchester at the same time as the events in this book took place, I wandered the same streets, and lived close by.  And I was going through huge difficulties of my own at the time of reading too.  Don't pass this book by.

There seems to be a theme running through this selection: I've always been drawn to stories of survival against the odds, of good winning out over evil.  Stories that leave you with a sense of hope, something I have often needed!

Of course if you'd asked me for this list on another week, I might have picked a completely different selection...

More great book choices over at Kate Takes 5 for this week's Listography.

Note: as some of you know, my beautiful daughter is not well, and I am writing this while she has a little nap.  Fingers crossed we will not be in the hospital tomorrow.


Post Traumatic Stress Disorder

That sounds very dramatic doesn't it?  I haven't actually been diagnosed with PTSD or anything else, well apart from being emotionally cold, selfish and self-centred, but that wasn't by anyone professional.

I am afraid of being judged.  But I need to write about something that happened recently.


I could not handle the behaviour of another adult.  That does not make me a bad person, it means that I am the product of what has happened to me in my life so far.  I am trying not to be a victim of those events, but sometimes certain behaviours trigger a response in me.  Especially if I am already very stressed - Smiley was sick.  This time my reaction was blind fear, and I could not control it.  I even resorted to pulling my own hair out in handfuls to try and calm myself down.  It didn't work.

To the adult concerned: I am very sorry that I could not give you the help that you seemed to want.  You need a different confidant, not me.  And apologies to Angel, who was woken up, and has not said a word of criticism since.

One day I hope to write about the events that caused this stupid reaction in me, but only when I've worked out a way to protect the identities of the other people who were involved.  You see it's a story of hope, we've all come out the other side, even if we do bear some scars.

For now I'm practicing my blank mind technique, not altogether successfully, and avoiding most social contact.

The phones are on silent, the Xanax prescription has been refilled, and I'm back in counselling.  Wish me luck!


We marched in the Parade!

Well almost, as you'll see.

It was all about Smiley.  She's had a good weekend.  There was bowling on Saturday and a Funfair on Sunday, though that was cut short due to a message from my son that he wasn't feeling well.  So that put a big question mark over our planned trip to the Dublin Parade today.  I was anxious about it anyway.  When she was little, the wheelchairs were allowed on the pavement edge with no barriers, so she could see and feel a part of it all.  But last time we went, we were squashed into this pen and she saw almost nothing.  I'd heard that things had improved, so I applied for tickets again this year.  Just for the two of us: both my son and eldest daughter would now rather chill out at home.  I got her ready and we headed into town, late as usual.

Hair decorated for the occasion

I needn't have worried, the stewards were really helpful and the disabled viewing area was spacious, and even had toilets.  Smiley was able to squeeze into a spot right at the front and she could see over the barrier too!  

She LOVED the parade, and, like all the wheelchair viewers, enjoyed lots of attention from the dancers..






There were historical tableaux...



Cheerleaders, who were cheered loudly...





Lots and lots of colour...


Giants...


And lots of marching bands...



As soon as the end of the parade passed us, they stewards began letting the wheelchairs leave, and so we marched at the end of the parade.  I'm pretty certain that Smiley thought she was part of the whole thing, with the crowds lining the streets there to see her.  Who am I to disabuse her?  It was the best bit!



And when we got home I found that Smiley's brother and sister had worked together to fill and put on the dishwasher.  Without being asked.  A great end to a really good day out and a little marching in the Parade!


Five Women who inspired me

Today is International Women’s Day.

I’m actually not a huge fan, but celebrating some of the women that have inspired me during my life is something that I can do!

But I am going to exclude my immediate family...because they would all inspire me in different ways, and you mostly know why by now..

So here goes.

My Dad's Cousin


When I was growing up all the women I knew well were mothers and housewives. They actually seemed very happy with their lives, but I was always restless and adventurous and couldn’t imagine living in the home for years on end.  But one woman was different, she was my Dad's cousin.  Her life seemed almost impossibly glamorous to me as a child in the 1960s.  She was a bank manager who travelled all over the world in her spare time, visiting places like China, decades before the country was opened up to tourists.  Now in her 80s, she is still invited to give talks to local groups about her adventures.  Sadly, I don't know her nearly as well as I would like, but her life has always inspired me.

Irish Mammy


I was looking for something to do after I lost my job in 2008, and a chance plea on Irish parenting site rollercoaster.ie led to a meeting with Irish Mammy (Treasa Dovander) and offer my services to PACUB her newly established group to fight cuts to child benefit.

Within 6 months we were influencing party political policies that are still impacting on Government decisions today.  I'd like to include every one of the group, but Treasa was the tireless leader, only taking a week or so off to have a baby.  She never showed any fear or doubt, and had the energy of six ordinary people.

Some of the inspirational women in the PACUB group, and me.

Marie O'Donoghue


Until the 1990s children with disabilities could be excluded from the Irish Educational System, but that all changed thanks to a landmark case taken by Marie O'Donoghue against the State on behalf of her severely disabled son Paul, who sadly passed away recently.  That case and the organisation that she established for children with severe and profound disabilities helped me greatly in my fight to get an education for Smiley

Éowyn


Well I couldn't ignore my Lord of the Rings obsession completely now could I?  Éowyn was the character that I identified with the most.  She tried to do the right thing even when she found it really hard, she made mistakes, falling in love with the wrong person, but learned from them, she was brave, she was kind and ultimately she turned her back on battles and became a healer.  What's not to like?

And apparently not everyone has seen the movie.  Really?  So here is her most famous moment, there were cheers in cinema...


Everywoman


The quiet women of the world, the ones who just get on with being mothers, helpers, healers, who cradle their poorly children even when their own tiredness makes them feel sick with lack of sleep, who walk miles under a hot sun to fetch water for their families, who work all day and sit with dying relatives all night to make sure they don't leave this world alone. The mothers who are thanked at awards ceremonies, but no-one remembers to give them a name.  Those are the women that I admire the most. They don’t get obituaries written about them, or awards or biographies, but they make a real difference everyday in the lives of all of those whom they love and care about.

I may not have admired them so much when I was a child (see above), but I certainly do now xx


Check out Listography for more inspiring women.


Wheelchair Scalextrics

Today was a much better day in special needs land.  The boy went to school, and so did I!  A pre-arranged visit to Smiley's wonderful school to admire her driving skills on the AKKA, a scalextrics track for wheelchairs that meanders around the school, and gives severely disabled kids a freedom of movement that they may never have had before.  I'd seen the pictures, but I HAD to see it for myself.  And video her using it of course!






The next step could be an electric wheelchair, as suggested by @indigojo_uk.  In my future I see a bungalow by the sea with Smiley whizzing around from room to room, with piped Britney in all of them.  I will be wearing ear defenders...

I can't think of a better reason to be cheerful :)

Reasons to be Cheerful


Living like a mole

Things are not going well again.  You see I got a health fright last week.  My cholesterol is off the scale, despite my efforts to calm down, exercise, eat more healthily and swallow those enormous plant sterol tablets.

I decided I'd better add a few more things to my 'give up' list.  After all, it's my duty to my kids to be here and healthy for them.

Unfortunately, this happened at the same time as I finished watching my favourite TV show of all time.  One that I've waited 30 years to see again.  Cue lots of tears.  Pathetic, I know, but it gave me something to look forward to in the evenings when I am on "waiting for the kids to go to sleep" duty.  I'm struggling to find a replacement, even with a free month's trial of Netflix.  And I can't seem to read at the moment either!  Getting out of bed is also becoming a struggle, yet I'm tired all the time.  Since midterm, school refusal is again becoming a problem, with all the disruption and stress caused to both him and me.

I'm trying very hard to find reasons to be cheerful and celebrating all the positive things here and on Facebook, but it's like there's nothing to look forward to, just another five years - at least - of living like a mole, while life goes on outside my front door.  I'm just not a home bird like my children.  More like a caged bird, trapped behind the bars of my children's needs.

I often think that my son could not have been born to a worse Mum - for him, I mean.  Apart from computers and chocolate, we have nothing in common except our genes.  I used to have plenty of male friends, more than most, cos I liked the same things they did: fast cars, adventure movies, competitive running, watching rugby matches, indie music, hot curries, science fiction, and more.

Then there's the guilt.  Oh the guilt.  For not being happy enough for my son and his progress, for not being grateful for everything that I have, for not appreciating how lucky I am.  

But somehow I have to get through, so I think I will give up giving up for now.  Perhaps it's better to feel better, and look after my kids right now, and let the future take care of itself.

So I'm going back on the statins and off to buy a large bar of chocolate, and a few other things...for medicinal purposes you understand.  Even moles need treats.


Learning to fly

Baby birds do it.

Adult children are pushed out of the nest.  

I didn't need pushing.  I couldn't wait to try out my wings.

I flew so high and so fast.  Did I ever say no to anything?  I don't remember.  My early 20s spent on a 24 hour roller coaster, fuelled by youthful energy, caffeine and Pils.   Sleep was for wimps, never mind lunch.  

My wingtips were surely scorched many times.

Now?

Everyday things can make me anxious.  Anything new, anything social, anything challenging.  What has happened to me?



This morning I heard Learning to Fly on the radio and it made me cry.

Well some say life will beat you down
Break your heart, steal your crown 
So I've started out, for God knows where 
I guess I'll know when I get there 

I'm learning to fly, around the clouds, 
But what goes up must come down


Is he right?  Is it inevitable?  The higher you fly, the harder you fall.  And all that.

I hope not.

Perhaps I need to learn to fly again.


Woolly socks and other simple pleasures

Yes I should've been doing something useful, but when the words pop into my head, I have to put them down somewhere.  Otherwise I cant concentrate on anything else.  And Smiley needed her lunch...

So that is how I ended up joining in with Listography, and Kate's challenge to find five simple pleasures.

Thick soft woolly socks


Really is there anything better on a cold morning than sliding your feet into thick soft woolly socks, still warm from the radiator?  Well apart from a steaming mug of coffee of course!



Sharp knives


For years cutting anything in my kitchen was a struggle.  I had knife sharpeners, but usually forgot to use them.  When I remembered, it seemed to make very little difference.  But a lovely lady gave me a set of new knives for Christmas, and I've suddenly discovered my inner chef: in my mind you can barely see my forearms as I chop at warp speed, and carrot slices fly all over the kitchen.  Whoops.

The bird feeder


My kitchen window looks out on to an ivy covered wall and the sun dappled bricks of the house next door.  Plus a little patch of sky if I lean forward over the taps.  But over to the right is the bird feeder and my childhood birdwatching habit means I still get a little bit excited when I see a goldfinch or a coal tit.  No sniggering at the back now!

Comfortable silences


Isn't that when you know that you can truly relax in someone's company?  Myself and the 21 year old spend a lot of time together, between shopping and cinema trips and driving lessons.  Sometimes the words just pour out, but other times there is no talking, but that's okay, neither of us minds.  It's just comfortable.

Taking the bike


With my cholesterol sky high again, I have to take exercise and when I head out on the bike, I can do the messages as well.  I can also go a bit further and enjoy some of the best views in the city...


What are your simple pleasures?