Chilled – Sat 4th July 2015

I’m not referring to the weather, it’s been another lovely sunny day here, but more of the atmosphere.

After a long week, it’s been chilled and relaxed, just how a weekend day should be.  No pressure and no antagonism between T and D (unusually).

We do have one hurdle to cross in the next couple of weeks though, T finishes school for the term six days before D, something he is delighted about.  Something which definitely won’t go down too well with D, once she realises.  It’s easier on her if I don’t mention it yet, otherwise we’ll have grumpy moments over the next three weeks.  Inset days always affect them, one delighted that they have a day off, the other extremely cross that they don’t!

But for now, it’s been lovely to see them both smiling, both relieved it’s the weekend (we all are).

Happy 4th July to any U.S.A. readers btw.

  

This week’s Happy Thoughts and #R2BC

Oh we are so pleased it’s Friday, it’s been a long week, especially with the extremely humid weather (it’s terribly British to mention the weather, isn’t it?).

But, happy thoughts are going to take precedence, because life could be a whole lot worse.  

So, what’s been making me smile (or go “eeeeeek!”) this week?

1.  It’s been Proms Week at D’s school.  This is an event which lasts all week and involves all the pupils – whether it be singing or playing instruments.

D has found the week quite challenging as it’s involved a major change to routine as her class have watched virtually all the performances and she’s been very apprehensive about the singing performances – unusual as she loves to sing at home.

She’s played the xylophone, she’s sung (reluctantly) and today she played the flute:

  
Apologies for the extremely cropped picture but I had to ensure that no other children were in the picture.

It was absolutely brilliant to see her reading music (SN style) and doing gentle little flute notes.  I think we may have an idea for Christmas now …

2.  I was having a browse in John Lewis during the week (the best shop to browse in!) and found some wonderful ex-display flowers.

  
They stand about six feet tall and I did wonder how they would go down on the bus ride home – fortunately they came apart and travelled home in much more inconspicious bags.

They look fab in our hallway and, needless to say, our flower-loving D adores them too.  They really made her smile after a particularly angst-filled day earlier this week.

3.  I’ve only managed the gym twice this week, but they’ve been sweat-inducing sessions.  I’ve met my steps target every day though.  

4.  A bit of common sense too.  T’s school are extremely strict about uniform and that jumpers and ties should be worn at all times.  However, this week this happened:

  
Hurrah! T finishes his year 7 in two weeks and his school tie is on holiday early.  A relief as it has been a tad warm (Yep, Brits and the weather again!)

5.  Whilst in town, a lovely Benefits cosmetics lady gave me a little makeover, using techniques that I don’t use (such as upper lid eyeliner and bronzer):

  
I loved it and have been endeavouring to get the straight upper lid line ever since, sometimes successfully!

I’ve been well set in my makeup ways for absolutely yonks so to have a fresh idea was really nice.  Old pre-smiley J would have mumbled “no thanks” and scurried away, smiley J (tis me) loved it!

It’s been a busy one and  we are a week closer to the summer holidays, which is good news for two tired Tweens.

Proms – My Word Of The Week #WOTW

It could easily have been “humid”, boy hasn’t it been a bit warm? I’ve felt sorry for the cats and guinea pigs covered in fur, they’ve had a “blimey it’s sweltering” look about them.

This week has been overtaken by a week-long annual event at D’s school, Proms Week.

  

That has to be our one word for the week.

It’s always a privilege to go along and watch the students perform, some in class groups, some in musical groups and solo performances.

It would be very easy to forget that every pupil at D’s SN school is there for a reason, that that setting is the most appropriate for them individually and getting up on a stage in front of an audience would be daunting enough, wouldn’t it?

But they do.  I have so much admiration for the staff who practice and practice with the groups, providing gentle support and guidance on the day, holding an instrument in front of a physically disabled child or keeping an over-excited child calm with a gentle hug.

The first year I attended a performance I wanted to cry with sheer pride, not just for D, but for every pupil who performed and that feeling of pride never goes, it’s lovely to see children that I’d see going in or out of school developing in both confidence and pleasure as they sing/play an instrument.  

Yesterday was challenging for D.  It was extremely hot in the hall and she didn’t want to go on stage and sing, anxieties had been building up overnight and, whilst she did go up with her group, she refused to join in and then had a meltdown after school, still in the stifling heat.

Today has gone better.  She had four performances to do, two this morning, two this afternoon – xylophone playing, rhythm band, a class performance and some more singing.  This was us after the morning sessions:

  
This afternoon she was tired, the hall was warm again and she’d spent a lot of time in there, the students watch all the other performances so D has spent the majority of the school week in there.  She usually loves singing but the last performance was tricky for her, but at least she went on stage.

Tomorrow brings her final Proms performance and it’s the playing of a flute.  Something she’s been having lessons with and she has the opportunity for further (paid) lessons as they believe she’s showing potential – which is fab (and a lot smaller than the cellos some other children have been playing!).

It’s been a week of going in and out of school (especially today) but it’s something that is always fantastic to watch and appreciate the amazing children who go to D’s school and their teachers.

The picture below was drawn by D as the school have a competition to design a picture for the front of the programme.  Her picture came second and is proudly displayed on the back of the programme with a “runner up” name check.  Fab isn’t it.

  

Overtaken – Weds 1st July 2015

Sometimes I don’t feel like blogging about our day, today has been one of those days.

But then I guess I started blogging because reading other people’s helped me, enabled me to realise that yes, there were many other parents living with autism and it was a relief.  To know that we weren’t alone in the joy and the tears, the frustrations and the triumphs.

So, on to today, primarily so I can “blog it out” and then look forward to a new day tomorrow, because no matter how difficult we may have found today, tomorrow is a new dawn, new day.

Anxieties overtook D today.  She was due to perform with the school choir during Proms week at her school (an annual week of music performances which is always a privilege to watch).

We walked to school with D twisting my arm (literally), sometimes gently, sometimes painfully, all the while her saying that she didn’t want to take part.  Which was surprising really, because D loves to sing, she and two others performed a fantastic solo in the Christmas concert and to hear D is singing at home is always an indicator that she’s happy.

Not so today.  I dropped her off, mentioned to her teacher that she was very anxious and nervous and hoped she’d be okay.

Her mood didn’t lighten.  She did go on stage with the group but didn’t sing, won’t do the actions and every time I caught her eye (which I stopped doing because..) she would fold her arms even tighter and scowl at me.  The two TAs either side of her tried to encourage her to join in, but no.

Afterwards she came over, plonked herself on my lap and demanded to go home.  Unfortunately she couldn’t.  It was an effort to get her back to her seated classmates and the (really quite) angry expression returned.

I know it was an achievement for her to get on the stage (she’d never have got that far in mainstream) but it’s such a shame for her that she couldn’t enjoy something she loves to do, because of those anxieties.

It got worse after school.  She had a meltdown near a busy road, parents and children from the nearby two schools going past and the distinct risk that she could bolt into the road.  Lots of tears, lots of emotion and then a slow walk home (T having decided he’d walk in front of us, he’d had enough too).

Some splashing in the paddling pool and our girl was still fragile but at least smiling again.  

Tomorrow will bring three Proms performances for D – 1 singing, 1 xylophone playing and her class performance – it’s a new dawn and I have fingers/toes everything crossed that it will indeed be a new dawn, new day and maybe one in which those anxieties don’t overtake D quite so much.  That “glass half full” approach here, definitely.

  

The Rules – Tues 30th June 2015

I know I mention it a lot, but we are incredibly proud of T and the way he’s adapted to secondary school life and grateful for the fact that we received a school place upon appeal (only one of six to do so, out of 35 cases heard).

There has been a lot for him to adjust to; the fact that he has to physically move classes for lessons whereas in primary he stayed in the same room,  the increased homework and that much of it is either set or performed via the school’s online system, the longer day and that he has to catch a school bus to and from. It’s quite a bit, isn’t it? Heaps for him to adjust to and he is extremely good at masking any negativity during the school day, letting it out when he’s home, sweet home.

On his first day (bearing in mind all the above), he was threatened with detention.  Why? Because he wasn’t wearing his school jumper.  The weather was much like it has been today, extremely warm and nowhere had it said in our welcome booklet that jumpers were to be worn at all times, irrespective of the weather.  It was one of the new Head’s remits, apparently.

It seems strange that there are so many “rules”, no popping to the toilet during class and no drinking of water during class.  If I went for a job interview in an office and they said the above, I wouldn’t be impressed.  I know that secondary school needs to prepare the young adults for the workplace but surely a bit of common sense has to come into it? Especially when the weather is warm and humid.  

So, it was a relief to receive this, this afternoon:

  
Yay! T is a tad happy about it too.  Something else he’s had to master is the tie-ing of his school tie.  He picked this skill up really quickly but at times it’s tied quite aggressively when he’s having an “off” morning.

It will (hopefully) make for a more relaxed T in the last few weeks of term, until they head back to school in September on a warm day anyway.

  
(A good day for D, I’m looking forward to watching her sing with her class as part of a week of musical performances tomorrow, always a reminder of just how settled she is, in the most appropriate setting for her)

Oooh oooh ah ah – Mon 29th June 2015

A monkey came home from a school trip to the zoo today, a mask-wearing T.

 
This isn’t him in the mask btw, but his parents (T’s, not the monkey).

T had struggled with the concept of a much freer timetable today, asking for timings both yesterday and this morning as he left.  I guess, though, it’s good that he can tolerate days in which it’s free-flowing, that there’s no “do this, then do that” etc, even though that’s what he craves.

Asked if there were any highlights of the day or bits he enjoyed most, he couldn’t think of any but (as his photos automatically go onto our iCloud) we could see that he had taken quite a few pictures so much have found a few bits to enjoy.  

Having the iCloud sharing is such a peace of mind, it means that if there was anything “iffy” taken, we’d immediately be aware, fortunately (for both) it’s mostly Minecraft screenshots.

And how about D?  Well she loved the fact that we could walk straight home without waiting for T’s school bus and we walked arm-in-arm and it was very relaxed, very smiley, very girly-ish.  

It’s made me realise that I somehow need to factor in 1:1 regularly with each of them during the upcoming summer holidays, although how I’m not sure ATM.

Otherwise a good start to the week for all, it’s a week which will see a lot of change for D as she’s in quite a few musical performances but at least it’s started well.

  

Pop! – Sun 28th June 2015

It decided to rain today so we found a new pastime today, once which T loved and I thought D would too – but she didn’t.

It involved bubble wrap, something we’ve enjoyed popping and painting with previously (it makes for a great show scene).

The expanse of bubble wrap was so long that I had a better idea, a bubble wrap pathway!  T could not wait to walk/hop and jump along it, each time the bubbles making a different series of “pops”.

 
He even “swam” on it, saying it felt just like swimming.

I was surprised that D didn’t enjoy it, but maybe it was just one more change in a week or so that’s seen plenty of them.  With more to come as she’s in five music-related performances this week at school, spread over three days so there will be plenty of scope for those anxieties to creep in and chip away at her.

We’ve already had a (gentle) “tell me what’s wrong D”, with a “I’m sad because it’s the end of the weekend” response.  Cue cuddles and a silent wish that she enjoys at least some of her week.  In contrast, T is full of beans because he’s on a school trip tomorrow and that means no lessons!
  

Clenched – Sat 27th June 2015

Every part of D’s being was clenched today, tears running down her cheeks, on the tip of an emotional outburst.  Even her toes were curled up tightly as her fingers held onto her onesie so fiercely I thought it might rip.

The reason? A hair wash and subsequent brushing with a Tangle Teezer.

D loves the hair washing part, especially the rinsing.  We always end with a light trickle of water on her scalp and she squeals with delight.  It’s funny, but neither she nor T like the hot water (I don’t mean mega hot, just warm), they both prefer it almost cold – as summer fun in the paddling pool when they turn the hose on each other will confirm.

Later on, the squeals turned to angry squeals, squeals that conveyed “I don’t like having my hair brushed” and “if I don’t clench my fingers and toes tightly I may scream”.  It’s difficult.

Any reassurance that it won’t take long is not met with positivity, maybe because she can’t see how much more there is to brush.  She is always very responsive to visuals.

Sometimes I feel I would be easier if her hair was shorter, but then I have to counter that against the fact that she can’t sit still for any haircutting (edges have to be trimmed very quickly) and if she won’t sit still for me, she certainly won’t for a stranger.  

T does moan and squirm when it comes to a quick going over with the clippers, but at least he’ll let it happen – even if he moans about it for ages afterwards.

I think I remember hearing that D’s school does “beauty clubs” in lunchtime clubs for the secondary pupils, so she may have a chance to participate and perhaps sit still for whatever they do.  It’s a good idea isn’t it, hopefully a chance to try something out in an environment that they are used to.  Shame it doesn’t extend to parents!

  

Zero – Fri 26th June 2015

No anxieties for D today, none.  Nothing preying on her mind when she woke up, she even skipped a little on the way to school and headed upstairs to her classroom happily.

This is the first time in ages that the morning has been like this, last week saw lots of angst over sports day and earlier this week has seen injection, swimming and other worries for her.

It hasn’t been easy to juggle listening to her concerns whilst T is interjecting with “why’s she worried about that?”, which will then prompt a reaction from D and then a “what did I do?” from T.

I think we’re all relieved it’s the weekend and that, for me, that we’re all safe and well, a definite day for counting blessings following the news from around the World.

One thing is likely to annoy T this weekend though, amongst no doubt others.  

He’s heading on a school trip on Monday and they have been given a list of things they should and shouldn’t take on the day.  One of them being phones, which I have tried to explain to T the school’s stand on this – that these could get lost/stolen – and listened to his viewpoint.

The classes have been told that they won’t need anything to occupy themselves on the journeys as they can talk to each other.  T, being a clever chappie, has worked out the timings of journeys there and back and said to me “I’ll be talking on the way there, we won’t have anything to talk about on the way back because we’ll already have said it”.  Part of me thinks that he has a point as his back-and-forth conversation can be somewhat limited.  Hopefully he won’t dwell on this aspect of the trip too much this weekend.

This weekend …. I asked D what she’d like to do.  Her reply was “cuddles with you (me), cuddling Bunny (her faithful threadbare constant companion) and some minecraft”.  Sounds good to me – as long as there’s some garden time and fresh air – after quite an angst-ridden week.

  

My Word Of The Week and R2BC

Gosh, hasn’t this week whizzed by? This time last week I was thinking “omg, I’m off to BritMums Live tomorrow” and now here we are, a week later.  I haven’t gathered my thoughts into a post yet, but will do, there were so many moments that I want to remember not to forget!

It’s been difficult to think of just that one word to sum up our week, but I found this which seemed appropriate:

  
(I love her hair btw, have always wanted mega long curls but don’t think it would suit me, sort of a Kelly Hoppen look, anyway…)

Yes, Brave, for probably many more reasons than I’ll include below:

1.  D has had shed loads of anxieties this week, at least one a day and sometimes two.  School-related but she’s managed to articulate them, sometimes hours later.  This I’m grateful for, that she will tell me.  Her injection this week was fraught with last minute changes, which don’t sit well with an autistic child anyway, but chuck a painful injection in and it’s not good.  Very brave girl.

2.  To enable me to head off to BritMums and have a night away, Hubbie looked after T and D, a major change for all.  There were texts flying backwards and forwards but I am so glad I went and it did D good to realise that someone else can look after her without everything collapsing around her.  Will I go next year? Definitely.

3.  Remember the torrential rain and storms last Saturday? I was walking home from the train station in them, soaked to the skin.  I could have had a bit of a “moment” over this, the puddles everywhere were very deep and I had to walk through them, making my jumpsuit legs absolutely soaked but some little frogs hoppity-hopping around made me laugh as they enjoyed the weather and it was a case of just forget the rain and cherish the moment (ish).

4.  T’s school report came home and he’s doing well.  There have been so many new experiences for him in secondary school and we are extremely proud of him. 

I’m hoping that next week brings less anxiety for D and more smiles, one of her methods of reducing anxiety is to give me a rib-crushing squeeeeze, sometimes lifting me off the floor, my ribs would appreciate a calmer week!

Oh and I know this was last week but D’s medal haul from sports day was just fab.