Fast – This Week’s #WOTW and #R2BC

It’s been quite difficult to think of just one word to sum up this week.  I could have gone for:

Cake – because there’s been plenty of that, the birthday variety

Or

Ache (oooh, that rhymed!) – because Hubbie is still suffering with his back and my bleeding (literally) mouth ulcer still hasn’t gone

Or

Pink – you’ll see why from the photo below.

After lots of thought, there could only be one word and it’s:

 
And here’s why, with some happy, cheerful reasons:

  1.  It was D’s 11th birthday yesterday, 11! The last 11 years have simply whizzed by since she decided to arrive six days early at home.  She’s packed a lot into those years and I’m hoping the next 11 years don’t go by as quickly.

The “pink” comes from the necklace above.  A lovely heart-shaped crystal on a chain, whip as soon as I saw it, knew it would be perfect for D, she loves it! 

2.  The days have sped by too and we’re all looking forward to half term next week, T especially as it means a break from tie-tying.

3.  My pesky ulcer has meant that I haven’t been out jogging yet (in preparation for what I’m hopefully taking part in next April), but I’ve found that jogging on the spot for the requisite time and then walking (aka making a groove in the floor) seems just as effective until afore-mentioned ulcer has healed.  I’ve gone beyond my 10k steps every day too, this might take a downturn next week, T doesn’t like to venture beyond the garden during the holidays.

4.  I’m never really one for stats and blogger tables, I’d rather blog because I enjoy it and it’s my little outlet but, I was pleased to see my badge had changed:

  
Big congrats to the lovely Jocelyn at The Reading Residence as her blog (which I love to read every time it pings into my email) is at number 4!  Very well deserved.
I’m hoping next week won’t go by so quickly and we’ll be reporting an ache-free time (that would be nice!)

Our Darling D – Weds 20th May 2015

  

How can you be eleven years old already? Where has that time gone?

We moved into our house six weeks before you were due and, in typical D fashion, you arrived early, you just couldn’t wait to get out into the world.  

You love to hear how you were born in our bedroom, by choice and not because we didn’t make the hospital in time.  It was bliss to climb into our bed at home and not have to worry about ward noise or visiting hours or having to hurry in the bathroom.  Lovely.  Like you say, we “lifted up the covers and there you were wriggling”.

You’ve packed a lot into your first 11 years, some expected, some not so.  It was very hard to accept the doctor giving you a lifelong “label” at age 4.5 but that intervention meant that you could be placed in the most appropriate educational setting for you and boy, have you flourished!

When we were first debating the mainstream versus SN school, a very lovely teacher from your mainstream nursery gave me a big hug and said “I’ve known people with autism go to university”.  It was her way of saying “keep positive, just wait and see” and from the very first day, we could see how much more relaxed you were in your new SN school.   

We had to choose between whether we wanted you to stay in a mainstream school and take exams (not yet! At age 16) or go to SN school and learn life skills.  It was a massive decision because you couldn’t read or write and no-one could say if you would, it was just a case of waiting …. and hoping, whilst knowing that you’d be happier in the smaller class sizes with more staff.

You have surpassed expectations, our wonderful girl.  You don’t like writing but you have a go, usually with a few moans and groans.  As for reading, well … you love the Rainbow Fairies series and the Daisy books.  You read those with enthusiasm, as well as road signs, text messages, everything!

Your vocabulary has increased too.  You had some Speech and Language therapy because your speech was very stilted and you’d get your pronouns muddled, also sequencing was an issue.  Now, we walk to school arm in arm and, moods permitting, you’ll chatter away.  

Sometimes you don’t have a good day, sometimes you get a bit overwhelmed by other pupils and you come down the stairs from class and bolt into a corner, but you always tell me what’s wrong (even though it may be hours later).

Speaking of walking, it’s been over a year since we’ve had to use your buggy.  Something that my back is very grateful for, because you’re nearly as tall as me!  We’ve been to town without the buggy and walked around when it was quiet (inset day), looking at all things girly and sparkly.

  
At your age, most parents would be thinking about the “P” word (puberty).  You galloped full speed ahead into that realm three years ago and although you hate your monthly injections, you understand why you need to have them.  Clever girl.

You are our little songbird when you’re happy.  This week you’ve been learning “War” by Frankie Goes To Hollywood and occasionally will burst into “War….huh! What is it good for?” during some very random moments.  

You sang in the Christmas concert last year at school, which was a very proud moment and another example of how far you’ve come at SN school, because you were too overwhelmed and scared to even enter the hall in mainstream, let alone join in assemblies or plays.

One thing we’ve learnt is that autism doesn’t have a set timetable, you’re doing things at your own pace, when you are comfortable and that is the best way to be.

I don’t know what the next 11 years will bring but we will always be there for you, encouraging you to achieve whatever you feel you can.  I know your school will help in finding college places or work placements, if you feel confident with that, but whatever you do, as long as you’re happy, we’ll support you.

You changed our lives 11 years ago, for the better.  There were a couple of horrendous febrile convulsions when you turned blue and stopped breathing which terrified us and we thought the worst, every day with you is a blessing, we are so proud of you.

You and T, you both used to follow me around as a constant shadow, you were (and still are sometimes) “The Pack”.

   
 
I’m linking this post up with #SSAmazingAchievements because the last 11 years have enriched and amazed us.   I hope the next few don’t roll around as fast!


No Grey Here – Tues 19th May 2015

Before I get to why I’ve chosen this title for today’s blog, I have to mention just how absolutely, totally and fantastically excited D is about her birthday tomorrow!  It’s lovely and really quite contagious.  She’s alternated between constant smiling and high-pitched squeaking because she’s so happy.  Made all the more lovely because she’s been counting down, she has been telling random people who we usually only smile and say “good morning” to on the school run and it makes all those years that she didn’t recognise that it was “her” day worth it.  

But back to the “grey”, it stems from a comment made by T on the way home.  He informed me that when he has children, he’s not going to lie to them like I have. Which I have to admit completely threw me.  Apart from the “just a minute” invariably being 2 or 3 minutes at times if they’re baying for something, I wasn’t immediately aware of anything.

Luckily (for me) he had an explanation.  T meant that when he’s a father (not yet please), he’s not going to say that there’s a Father Christmas, Tooth Fairy or Easter Bunny.  Or any other fantasy figure.  Because, as he said, they don’t exist.

Fair enough.  For T, who’s mind is set on a straight path of black and white, there is no grey, I can completely understand where he’s coming from and there were times in the run-up to Christmas that he was bursting to tell D that the “Elf On The Shelf” wasn’t real, but he thankfully didn’t.

I admire his honesty, the way that his mind can stay focussed but it would be nice if a little grey crept in now and again.  Those little traditions and folklore figures are what makes life fun.

Either way, I’ll relieved he hasn’t told it as it is to D, as yet anyway.   Just as well there isn’t a “Birthday Bunny” or similar because that may have been quashed today!

Anyway, I wonder what time our squeaky songbird will wake tomorrow? I hope everyone’s day has gone well Jx

  

Tipping – Mon 18th May 2015

Today has felt a bit like this:

  
On the one hand, we have D’s absolute joy at her upcoming birthday (2 sleeps to go).  We could never ever begrudge D any of this joy – ever – because she didn’t really understand the concept of a birthday until about the age of 7 and to her, it was just another day.

On the other, was D’s anger at the weather (rain this morning, gusty wind and threatening more rain this pm).  She disliked it immensely.

And so our walks to and from school have veered between a very excited D, to an agitated D at the weather.

T, poor T, is extremely cross with me because I used the wrong grade of clipper when cutting his hair at the weekend.  It was a genuine mistake (honest!), he has one number for the top and a different one for the sides, enabling the top and crown to be slightly longer.  

Guess who was distracted and mixed them up? That would be me.  T is adamant that I did this deliberately in order that his hair is short all over …. but these things happen …. I have been told that if I was a hairdresser, I’d be sued (!), fortunately there  wasn’t a charge involved.

So we had T grumbling about his hair, D agitating about the weather and let’s say the path to the front door couldn’t appear quickly enough.

Then, it was a case of “keep calm and carry on” and hope that things would settle down.  Which they did.  Until tomorrow, when we do it all over again.

The positives being:

1.  By tomorrow, there will be one sleep to go for D

And

2.  T’s hair will grow back, quickly too as it’s like mine.

A definite “Monday” start to the week Jx 

Just Be You – Sun 17th May 2015

Sometimes T is amenable to a chat, I like it when we do get some time to do this, it gives me some insight into how he’s thinking and he has such a fast train of thought, so chats can start off on one thing and whizz off at a very rapid tangent.

He’ll be 13 later on this year, hopefully puberty will treat him kindly, maybe because he’s already pretty open at showing his feelings (whilst he’s at home), it will be a smoother ride?  I guess time will tell.

I remember when I was his age, I thought anyone over 21 was so old and there were times when I thought I knew everything (little did I know!).  I’ve mentioned this to T, that we understand if he thinks we’re “ancient” but that we have been there, done that, got the wrinkles if he ever wants to talk about things.

He has such a great capacity for seeking and retaining knowledge, his numerical memory is amazing and will quite often correct Hubbie on football stats – and turn out to be correct.

I always tell him we’re proud of him (we are) and that we understand that life in a mainstream secondary school can be stressful (it certainly has been the last couple of weeks for him) and our memories of secondary school.

He fully understood his autism diagnosis nearly two years ago, but prefers to just call it “high functioning” as opposed to “high functioning autism”.  It’s his choice.  Sometimes I wish he didn’t have this “label” as from the very first day there was someone who said to Hubbie “you know, now you mention it, I can see that he’s different” …. and waffled on in a similar vein, someone who’d known T for years and therefore this new “label” shouldn’t have made any difference.  But, it was necessary to seek advice as to whether our parenting instincts were correct before he entered secondary school so that if support was needed in future years, it may be easier to obtain.  

What we always say though is “just be you”, be happy with who you are and don’t try to be someone else because others may prefer it that way.  

He’s happiest at home, not wanting to “hang out” or just wander around a village centre with no objective.  He likes his football, has really got into NHL (hockey) and loves to read.  He likes to know where he’s going and the route taken to get there.  He’s started to give and receive cuddles, but on his own terms.  Sometimes he intensely dislikes D and sometimes he’s very accepting of her.  He doesn’t like hot meals or “wet” food.  He’s our T, we wouldn’t be without him.

My last tweet for Mental Health Awareness Week, although there will be a round-up post:

  

It’s what I wish for T and D.

Not Dwelling – Sat 16th May 2015

We try not to dwell in the Bluecrisps household when things don’t go particularly well, there’s no point.

When we had D’s parents evening at school this week, I was talking about an issue that does concern D (one of occasional violence in class, not by D) and the staff explained how they coped (and I did feel for them) it’s as we do – don’t dwell, don’t let the children see it’s affected you and move on.

When D bashed me on my sore jaw last week, part of me wanted to go “Owwwwwwww!” and howl because it blooming hurt, but the rationale side to me knew that this would only make things worse, D was already over-upset and it would scare her to see that I was upset and in pain.   So, we moved on with calming her down whilst I was thinking “Ow!”.   

An approach that proved it’s the right way to be with her the next day, when after T had got off his school coach and we were all walking home, I mentioned that my mouth had been bleeding (oh, it’s all good fun), D got worried, then scared and then said that her mouth hurt.  It was as if she could only show empathy by saying that she was hurt too.  

It’s healthier not to dwell, we’ve had a good day, both T and D have enjoyed the sunshine and the fact they haven’t been at school.  D was great in helping with the shopping without being asked and T and Hubbie had a fab, competitive and very funny game of NHL hockey together.  Watching them both laughing and gently teasing each other, it was really good to see that father-son bond as I don’t get to T’s football games.

Today’s tweet for Mental Health Awareness Week was along the same lines:

  

That’s how we do things.  Hopefully it works.

Oh a TGIF – Fri 15th May 2015

Yipee, the weekend is upon us and a week to go until the half term break, there was a definite feel of “we made it to Friday” around the table this evening.

T is happier after a challenging couple of weeks at school and D brought home a certificate for being very brave during an outdoor challenge.  It’s good to know that achievements over and above (literally in D’s case!) the norm are recognised.

She was full of smiles on the way to school, I always do a “what was yesterday ….. what day is it tomorrow …. so, what does that mean today is?”, to which she’ll excitedly squeak “Friday!”, but today I added to it with “what was the day before yesterday … what is the day after tomorrow?” and she did extremely well.  Scope to include in numbers for a bit more of a mental challenge next week I think, mood permitting.

Speaking of achievements, today’s Mental Health Awareness tweet was:

  

The Notes section on my phone is so handy and, at times I have so much whizzing around my head, that if I don’t note it down I forget whatever I’m meant to remember! I have a cork notice board above my desk too and that helps keep the clutter down.  

  
(Taken empty as there are addresses etc pinned up there)

It is always a happy moment when either a note is deleted from my phone or a task crossed through, makes me feel slightly more organised too.

And we’ve ended the evening quite reflectively.  

Today marked the first anniversary of the sudden death of a little girl in our village.  To commemerate her, her family requested that there be pink and purple balloons and ribbons around as those were her favourite colours.  The community stepped up and it has been bittersweet to see balloons and fabrics fluttering in the breeze.

And Hubbie witnessed a road accident tonight, he was behind two cars that hit a young boy.  Fortunately the child was sitting up and talking as he went off in an ambulance but both incidents serve as a reminder that life is short and you never know what is around the corner (which may just be the prompt for a future #SHhealthyminds tweet).

Have a fab evening Jx 

Smiley – Thurs 14th May 2015

Smiling is contagious, isn’t it? I’d defy anyone who, having seen a smiley D today, didn’t smile back.  She’s been very happy.

She’s looking forward to her birthday next week and counting down the sleeps.  I saw the ideal present for our D today, can’t wait to see her face when she opens it (assuming it’s still there when I go back).

She’s also been extremely smiley following her parents evening appointment after school.  There was nothing negative at all, from either side (well, not about D anyway) and they are very pleased with how she’s maturing (in terms of being able to tell me sooner at the end of the day what’s wrong) and – this is fab – how if she finishes her work early, she helps the child she sits next to.  Isn’t that lovely? All helping with her social skills and showing that there is a really kind D in there – which we knew anyway.

D, bless her, relaxed on a cushion whilst we chatted, reading her Minecraft book, listening to the comments and smiling a little smile.

T – thankfully – has had a better day, despite the rain.  He’s been more open to a (kind of) two way discussion and has had a little smile going on too.  A few comments directed at D but they more-or-less washed over her.

I was debating which word to use as my word to sum up our week, it could have been “ow” because Hubbie has a bad back and Dolce The Ulcer has been a painful constant for me this week (quite spectacularly bloody yesterday too) but, based on the above, it has to be:
  

That’s better than “OW”, isn’t it?

Today’s tweet for Mental Health Awareness Week was:

 
More on that in a separate post Jx  

Two under two – not your average family

The weekly lifestyle magazines are full to the brim of stories about the new Princess, Charlotte Elizabeth Diana.
It’s a lovely time for the Royal Family and l’m pleased that Catherine had a safe delivery and healthy baby after what apparently was another troublesome pregancy.  Why, by the way, do newspapers and magazines insist on still calling her Kate Middleton, when she’s been married for (is it) 4 years? And the articles, William will be very aware that his mother will never meet her grandchildren, he doesn’t need reminding.  One thing I do wonder is how the new Princess will be compared to her late grandmother, especially as she has her name as a middle name.    One supplement had 329 pictures or something, as a “souvenir” of what? When she’s barely over a week old and has only been seen twice in public.

Anyway, the stories are all along the jiste of “two under two years, how will she cope?” and this is where I get a bit peeved, because this is no ordinary family.  They have help – lots of it – cooks, night nurse, nanny, gardener, etc etc.  This is not someone who will be kept awake at night, either with the newborn or the toddler, then have to ensure that the household is fed and watered before older children go off to school, then a walk to the supermarket with a silent prayer if one is crying that they don’t wake the other one, then a school run, home to make tea and then it’s getting everyone sorted for the next day, whilst trying not to think about how the night will go.

I had T and D 18 months apart and it was hard work, very.  Visitors would want to hold the new baby but not offer any practical help and we were basically left to it.  I must admit, I preferred it that way, I just like to get on with things – whether it be trying to get up and down the stairs with a child on each hip, or attempting to make tea whilst the low cupboard I set aside for T and D to “wreck” was being emptied of its play saucepans and food.

I was also on some hefty antibiotics for a blood injection so the snatching of meals became even less frequent as the dose was 4 times daily and on an empty stomach.  How I got through those first six months, I don’t know!  Meals were ate one-handed with a fork only, if I did sit down.

And then all the waffle about how long the Queen stayed for her first visit with the baby….19 minutes!  Well,  to be honest, if the baby was asleep then it’s all bit (whispers) boring isn’t it and the Queen is in her late 80’s, she’ll have wanted to see the ten fingers/toes etc and that’s all that matters, that all are healthy.

Don’t get me wrong, I think the Royals bring in much-needed tourism (and revenue) for the country and I love all the pomp and ceremony that goes with events and celebrations but this isn’t a family in a semi, trying to make ends meet and I think it’s foolish to pretend otherwise.

 

Take Heed J! – Weds 13th May 2015

This was today’s tweet for Mental Health Awareness Week (I’m tweeting daily in return for a donation to Mind Charity):

  
And I should have taken heed of that this afternoon, emphasis on the “should”.

T had a bit of a shouty moment on the walk home, proceeded to storm ahead of us and has withdrawn ever since.  It wasn’t pleasant at the time.

I felt a bit down because it set the tone for (what can sometimes be a chatty) walk home, but – thinking positively, I guess:

1.  He is coping extremely well in year 7 in mainstream.  He’s made some friends, even though they seem to be limited to school time only and he has no interest in seeing them outside of school.

2.  By (1) above, I mean he’s masking any negativity, any little comments until he gets off that school coach …. and then it’s unleashed.  Which (positivity here) means that he’s not creating any scenes at school (which he wouldn’t recover quickly from) and is there to do the best he can.

Which was what my tweet was about today.  It’s very easy to think negatively, especially when your child is SN, to imagine all the things they WON’T do (and if I wanted to wallow, I could and did previously, with detriment to my mental and physical wellbeing).

It’s far healthier to focus on what they/you CAN do.  

Okay, for me personally, I’m never going to be an award-winning blogger (I was a very proud finalist last year though), for the simple reason that this blog isn’t just a parenting blog, I’m not inspirational nor am I the best writer in the world.  But, this blog is my little voice, my little way to attempt to raise awareness of a lifelong disability that’s invisible and if fellow SN parents/carers/individuals can identify with something I’m saying, great.  That’s my aim.

Similarly, T and D have their autistic traits and mannerisms, sometimes we have our Friday family tea and there is zero input from either, which defies my previous anticipation of a family like the Oxo adverts – all smiling, taking the mick out of each other and chatting.

But, they each shine in their own ways.  T is a superb sports player and enjoys playing as a team, football being his passion.  

D (when she’s not overly anxious or emotional) has a lovely little nature.  She is always saying “I love you” and her cuddles are rib-crushingly intense.  She is so happy in her SN school, with its smaller class sizes and is reading fluently and (she doesn’t enjoy it) writing when she needs to (amidst moans and groans).

We are all healthy (apart from Dolce the ulcer) and thinking positively is just so much better, isn’t it.