InstaLinkLove – Week 49 #week49 #instalinklove

By | August 12, 2017

Welcome to the forty ninth week of InstaLinkLove. 

The linky is with me for a while to enable Vicky to rest and enjoy her newly extended family life.

If you haven’t joined us before, then this is the easy-to-use linky which helps you get your Instagram posts a bit more interaction and interest. 


Thank you to everyone who linked up last week and welcome to those who are back for more and those who are first-timers.

This is a really straightforward, no stress (none of us need that in our lives!), easy to use linky. All you need to do is link up the URL from up to two of your most recent Instagram posts. I say most recent because this is better for interaction. 

All you need to do is find your Instagram account on-line, click on the photo that you want to link up and then copy and paste the link to that specific page.

The only condition is that you go over and like everyone else who links up. 

Here’s my favourites from last week’s link-up:


Please remember the rules:

*You can link up to 2 images per Instagram Account per week. 

*Please remember to visit and “like” the other pictures linked up.
 
It would also be great if you could share your post with the linky on Instagram using the hashtag #instalinklove to help grow the community. 

 
Thanks and really looking forward to seeing what you’ve been up to on Instagram this week x  

In Knots – My #WOTW 

By | August 8, 2017

I’ve managed to tie myself up into proverbial knots at the moment, this isn’t a worry about a particular thing but all manner of things as we approach my operation on 21st August.

Upon waking every morning I don’t think “oh, it’s (say) Tuesday” or “wonder what the weather is doing”, it’s more of a “(insert swear word)! It’s xx days to go”, which isn’t exactly healthy is it? 

Apart from this morning, when I woke up with the song “Free Nelson Mandela” in my head – nope, me neither!

So, I’m going to list out what’s currently putting me into knots (my word to sum up our week) and try and get a bit of rational thinking too.

1.  The Operation

The main worry is that I won’t wake up.  I’m also worried about how D will be whilst I’m “under”.  I’m worried that the operation won’t work (like last time).

Thinking sensibly: Of course I’ll wake up, that’s why the pre-op is so detailed, the exact amount of anaesthetic will be tailored for me, the staff will be very used to nervous patients.  Remember waking up after the op last October.  It was fine.

D will be with Hubbie, it’s a shame she won’t be at school but I’ll be able to see her after, she’s been very clear that she doesn’t want to see the operation (bless her). A cuddle with them both will be lovely afterwards.

Will it work? It blooming should do! The surgeon operating this time is a foot and ankle specialist, he knows what he’s doing, that’s why I’ve had to wait so long.  I doubt even my silly feet could rebel against a two-toe fusion!  In any case, I’m not going to know until three weeks afterwards how it looks.

2.  Post Op

I’m worried about how Hubbie will cope, he’s going to have to put lunch out before he goes to work and start on tea when he gets back, as well as making sure the washing is done, the cats are happy and the house looks reasonable.  It’s a lot and we’ll get through one operation and then there’ll be the other stupid foot to have done.

It’s going to bug me that the washing line will look like the washing has been thrown on it, that the bath might beed cleaning that the hoover could do with coming out.

Thinking Sensibly: We got through it last October, we will again.  I won’t be getting to the window to see the washing line so…out of sight, out of mind? If tea is late, as long as the children and Hubbie are fed, that’s okay isn’t it?  It’s only a few weeks, we’ll be okay.

3.  The Period From Hell

This one has been a major worry.  The day after my op last October, one of my feet wouldn’t stop bleeding, we had to go to A&E which, as I was meant to be in bed with it raised, didn’t help the bleeding.  

On top of that, I had the most incredibly vicious period so I was literally being drained (sorry TMI), there was one point in the middle of the night in the bathroom when I knew that everything was rapidly heading from my head downwards and I knew if I didn’t get back to a lying-down position, I was at risk of a stroke or worse.  I remember gasping out to Hubbie that I was not going to die in our bathroom and found some strength from somewhere to get up and get to bed.

This has haunted me ever since and made me feel very down when I knew one or two more operations were necessary.  

Thinking Sensibly: I have tablets to take from three days before the operation until whenever I’m ready to have a period.  They’ll work I’m sure, I need to mention them at my pre-op next week.

If I have a foot that won’t stop bleeding this time, there is an alternative to A&E which we’ve discovered, a drop-in centre 20 mins drive away which has a quicker turnaround in seeing people.

4.  Staying Put

I’m not a great one for sitting still.  I did too much too soon last time (washing etc) and although this didn’t effective the need for further ops, it meant that I was in more pain than I should have been.

Sensible thinking: I have plenty to keep me staying in one place – crochet, reading, I might even write some snail mail!

I’ve booked in a highlights and hair cut in mid October and that gives me something to aim towards, similarly I’ll book a manicure for around the same time.  No rushing back and being in undue pain (mind you, the nerves are shot in my feet so they already hurt!)

5.  School Transport 

Last time around I went into the operating room area crying because we didn’t have school transport agreed for D, this time around its T’s school coach that is in jeopardy as the route is being withdrawn unless there is a minimum of 35 signed up, yesterday there were 13, so a bit of a shortfall.   

Thinking sensibly: there’s not a massive amount that can be done on this, T’s school have massively let us down by letting this happen.  We were only told the week before the end of term and the school hasn’t put details of a closed group I’ve set up to try and establish if we’ll have the numbers needed (helpful, not!).

What will be, will be, if the coach service is stopped, T has the offer of a lift for two terms.  It’s too far to walk and on a too fast and dangerous road to cycle. 

This is the one that isn’t effected by whether I’m walking or not as I’m a non-driver, maybe once school returns, the head might decide to help – I doubt it very much.

This, however made me laugh yesterday: my friend did one of those “what does your name mean?” FB things and hers was very positive, very appropriate.

Mine on the other hand, said this:

I’ve often wondered about a name change… 

InstaLinkLove – Week 48 #instalinklove

By | August 5, 2017

Welcome to the forty eighth week of InstaLinkLove. 

The linky is with me for a while to enable Vicky to rest and enjoy her newly extended family life.

If you haven’t joined us before, then this is the easy-to-use linky which helps you get your Instagram posts a bit more interaction and interest. 

Thank you to everyone who linked up last week and welcome to those who are back for more and those who are first-timers.

This is a really straightforward, no stress (none of us need that in our lives!), easy to use linky. All you need to do is link up the URL from up to two of your most recent Instagram posts. I say most recent because this is better for interaction. 

All you need to do is find your Instagram account on-line, click on the photo that you want to link up and then copy and paste the link to that specific page.

The only condition is that you go over and like everyone else who links up. 

Here’s my favourites from last week’s link-up, such lovely expressions in all the photos:

Rules:

*You can link up to 2 images per Instagram Account per week. 

*Please remember to visit and “like” the other pictures linked up.

 

It would also be great if you could share your post with the linky on Instagram using the hashtag #instalinklove to help grow the community. 
 

Thanks and really looking forward to seeing what you’ve been up to on Instagram this week x  

Managing 

By | August 2, 2017

I popped this photo onto Instagram earlier, of a truly happy D:


She might look uncomfortable scrunched up but she’s not, she’s very relaxed.

And the reason? Cash Trapped, a game show that has replaced The Chase on ITV1 for a few weeks, normally this change would cause D angst but she gets oh so excited and a teensy bit flappy whenever Cash Trapped is due to start, it’s lovely to see (and hear).

I haven’t mentioned much about our school holidays so far because they have included a fair few meltdowns (daily last week), D always struggles with the out-of-routine that the school holidays bring and, as she’s now nearly as tall as me (she’ll be mega pleased when she’s taller than me, she will be!), her meltdowns do get harder to manage.

A lot of it is around routine, as I’ve mentioned, but some of it is around my upcoming operation on 21/8, that is VERY difficult to cope with because I have a far bit of worry around it too, I just don’t show it,otherwise  we’d be tangled up in an anxiety-filled vicious circle 24/7.

It’s “paste on a smile” time, which is hard when I see things like this (a sheet in her school work that came home, as to what worries her):


That mega long red negative worry is “mum going into hospital”.  

But for now, she’s happy and giggly and yes, looking forward to 5pm tomorrow.

Thanks Bradders.

I never put these into posts, but you can follow me on Instagram here or on my FB page here, be good to connect with anyone there 😀

Tips for starting primary school with an ASD/SN child 

By | August 1, 2017

Yesterday I shared my tips for starting in secondary school, in this post, I’m re-visiting our experiences of D starting firstly in mainstream reception and then transferring to SN school.

These are our experiences and are designed to help, preparing for any child to start school can be a worry, when your child has SN, those worries can be magnified many times.

To give a little bit of background, D was in mainstream schooling from nursery (aged 3.5) to 3 months short of her 6th birthday – so a term and a half into year 1. 

D was diagnosed with autism at 4.5years and it then took a year to get her statemented, at the second attempt. That year between diagnosis and statement was one of the longest and most stressful of my life. 

I had the feeling constantly that D was a number, a commodity – not an individual and that the “panel” who would be deciding my child’s education viewed her as a cost, a budget figure.

D struggled in mainstream, a lot. She had 26 hours a week 1:1 support from the moment she started in Reception – so before her statement came through. Her 1:1 TA was a wonderful, empathetic lady and we worked very closely together to try and ensure D enjoyed her days at school.

Unfortunately she didn’t.. D was overwhelmed by the sizes of the classes, the noise, the bustle, the excitement. One of her anxieties is that of having people too close to her. So you can imagine, there were times when she was not in class, but doing separate work with her TA outside the classroom.

Because her TA funding did not cover break times and lunchtimes, D would spend these holding onto a playground assistants hand.

I found it very hard to fathom that my daughter – who could count to 50 by the time she was 3 years old and was recognising letters from 2 years old – was put onto the “slow learners” table on the times that she was able to be in the classroom. Due to her inability to read phonetically and her inability to form letters? Plus delayed social skills?

D was never able to go down to class assemblies or participate in school plays – again her anxieties took over.

As soon as we had her (second attempt at) statement through, I was pushing for a place at the local SN school, we had already viewed it and knew it was the best place for D – but of course, every child is different. A lady who had a downs boy in T’s class kept saying to me “stick with it, it’s D’s right to be there” but I knew it wasn’t for her.

So, I would say – if your child is starting “big” school soon:

*Establish a working relationship with your child’s 1:1, get basic ground rules as to what you expect from them and they from you

*Be prepared for meetings with the school to be emotional – no matter how trivial the subject matter may seem – I cried in every meeting! 

Which brings me on to:

*Write everything down in advance that you want to say, always have a notebook in your bag so that if you’re at the checkout, for example, you can write it down before you forget.

*Be flexible, the school will want your child to enjoy their day as much as you want them to.

So, that’s the prep, but what about the actual start day?  

There are so many things to think about, such as:

*Uniform. A uniform can present so many sensory issues with “scratchy” material, buttons and zips. If you have a daughter, you might be concerned about her wearing a dress, especially if she has a tendency to roll about the floor.

*Practise with your child zipping and unzipping, buttoning and un-buttoning. If zips prove too much, think about trousers/shorts with elasticated waists and for a girl, consider leggings under a school dress or pinafore or gym leggings (which D wears, they are thicker than usual leggings and aren’t see through at all, try Next online).

If a woolly cardigan or jumper isn’t a possibility, how about a plain sweatshirt in the school colours.

*Shoes, if your child can’t tie shoe laces, there are Velcro school shoe options, similarly gym plimsolls from Clarks. D wears Skechers go walk as these have no laces and are very comfy, almost trainer-like in a navy blue. 

*Lunchtime – this can be fraught with anxieties due to the amount of people in a school hall and the sensory issues. If you find that your child isn’t eating at lunchtime, suggest that they be allowed to either sit somewhere quieter with a TA or have them home for lunch if you live close enough.

T doesn’t eat lunch at all, which worried me at first, we compromise by him having a big breakfast (toast and cereal) and then his tea is ready as soon as he gets home. This option is easier than clearing out uneaten food from his school bag!

*At home time, make sure, if you collect your child that you’re always in more-or-less the same place, this gives them reassurance that you’re there and hopefully you’ll be greeted with a smile.

If your child travels by transport, stand in the same place every day so they see you as they descend the school bus.

 Make a big, huge smile when you see them and they see you, you’re their constant in their life and who they’ve been waiting to see

But

Both D and T tend to mask their emotions whilst they’re at school and it’s always very clear from their faces if they’re not happy. If this happens and there’s a meltdown when you collect your child, get down to their level and reassure them in a calm tone – ignore the stares and comments, I know it’s hard not to.

*If your child doesn’t eat much during the day, they’ll be hungry (hopefully) at home. Only when they’re feeling relaxed and calm, with a full tummy, might they open up a bit about their day. You might find that it can take a few days before they’ll say what was wrong previously, I guess it takes a little while to process, especially if speech is stilted.

*Use the home-school diary and email to pop any concerns/comments in, we had copious notes when D was in mainstream which trickled over to very little in SN school, they go by the “no news is good news” theory but having an email address means I can pop anything across.

*Playtime can be tricky for a SN child, noisy and overwhelming, this is usually when a 1:1 isn’t around and I’d hear that D would cling onto playground staff for reassurance, there’s no easy answer for this, or for not being included in play dates or parties.

Remind yourself that the other parents are missing out on getting to know a very individual child!

*And lastly, try and relax whilst they’re at school, I know it’s hard not to worry but have a coffee date or catch up on a tv programme or do something you haven’t been able to for ages – but keep that phone close by!

Good luck if your child is starting school in September.

If you have any further tips, pop them into comments Jx 

Preparing your ASD child for secondary/high school 

By | July 31, 2017

Ooh, the summer holidays are whizzing by and new terms with new teachers beckoning for my children.

It’s got me thinking back a couple of years to how I felt as secondary school loomed for T and the concerns I had. I thought I’d share them to see if anyone found them useful.

 My main one was around his school tie, never having had to wear one in primary school, would he master his tie and accept the fact he’d have to wear it every day? 

Having an invisible disability can have its drawbacks, on the one hand it’s a relief that it isn’t immediately obvious but, as T tends to mask his emotions, it can mean that in a school environment, people assume he’s okay, when inside he’s anything but.

T’s straight-forward and direct way of talking can mean that he can seem offhand or rude, this isn’t the case, he’s just not skilled in either reading emotions or knowing what a conversation has come to a natural end. This particularly concerned me bearing in mind that he’d be travelling to school by school bus, what if he indirectly offended an older child – by either seeming to ignore them or producing one of his glares – would there be repercussions?

And, bearing in mind he was the only one from his primary school, would he make friends?

Fortunately, the majority of my fears were unfounded, he copes with the day, occasionally we’d get a “flare up” on the walk home (D and I would wait for his school bus) and D would bear the brunt of a bit of pent-up sarcasm and sniping, but the side-by-side aspect as we walked (and therefore didn’t have any eye contact) seemed to help him open up a bit about his day.

I wanted to share some tips we’ve used throughout the year, they may help anyone facing a long six weeks of wondering how year 7 will go.

1. There is bound to be a stricter uniform code, with a tie, jumper or blazer being required to be worn throughout the day. On T’s first day, it was 23degrees and he went in thinking he wouldn’t need a jumper, only to be told that is was compulsory and he faced dentention if it wasn’t worn the next day. So, be prepared (as this wasn’t mentioned in any papers).

Practice the tie-tying. Even if you’re happy to do the tie first thing, there’ll still be times during the day (eg after PE) when they’ll need to re-tie it. We made it into a little game throughout the holidays, which appealed to T’s competitive spirit, sometimes he’d be faster than Hubbie, sometimes it was very close.

2. If you can, go to the school site during the holidays, so that your child can re-familiarise themselves with where Reception is, where the car park/bus stop/main gate is, it definitely helps doing this when its quieter. We also went along the route the school bus would take, pointing out little landmarks he could see and recognise that he’s nearly at school/nearly back in our village (some were daft things like a field of cows or a funny-named farm but it all helped).

3. School books – my goodness there will be loads! Stock up with sticky-backed plastic to cover their exercise books as they will get a bit battered, we put symbols relating to the subject on too, as this made identifying the books easier.

Keep the school books on a specific shelf/crate, similarly with PE kit. It makes getting prepared easier.

Label everything! Shoes, calculator, pencil case … everything! If something is found, it won’t be traced back by the label, it will get lumped into lost property/student services. Not ideal but secondary school has a heck more pupils than primary.

4. Get to know the SENco. An introductory email doesn’t hurt and sometimes they’re not immediately aware of any additional needs. When we first met with T’s tutor, she had no idea of his diagnosis (which seemed poor at the time) so it helps that you know that they do. This also opens up a communication line if there are any issues.

Similarly, your child’s tutor can also be contacted by email, as well as subject teachers.

5. The school bag. Forget all these messenger-type bags, they are going to have a lot to carry around. A decent backpack will ease the weight on their shoulders and should last a while too. T started with a messenger bag but very quickly moved to a Hype backpack, lots of colourful and quite funky designs and they last too.

It helps to pack the school bag the night before and include things like calculator, maths instruments for each appropriate lesson, detentions can be dolled out for (what seems like) minor things and it can all seem a bit demoralising.

6. Much of the homework and letters could be on an online system, so ensure that you and your child have access. Some schools operate an online cashless canteen system, which is great security-wise and sometimes you can see exactly what they’re spending your money on!

Get into a routine with homework, either time spent day-by-day or a longer time over the weekend, whichever is preferable, but pre-warn your child that homework will no doubt increase in year 8 and beyond.

7. The planner. Most schools operate a week 1/week 2 schedule, which can seem daunting, have a print out of the schedule on a notice board and it helps if it’s double-sided so that there’s only the current week on show. The planner usually needs signing by a parent every week (dentention if not signed!) so get that into the routine.

But most of all, reassure your child that everyone, no matter how confident and “big” they seem, were a apprehensive and worried year 7 once. People are there to help, you/your child only has to ask.

Day 26 – 30 Day Music Challenge 

By | July 30, 2017

Today’s prompt is “A Song That Makes You Want To Fall In Love”.

Who else could I dedicate this to but my Hubbie and when I first caught sight of our children, with that “wow, did we make this baby?” moment.

You Came by Kim Wilde, this has received some (obviously) smutty comments under the YouTube video, but apparently it was written by her brother following the birth of his first child.

When Hubbie and I met, it was like meeting a soulmate, we finish each other’s sentences and very often I’ll think “I’ll just phone him to say “Hi”” and my phone will rumble with him calling me!

Little did he know when he met this single mother 17 years ago that he’d be married within 2 years, with a child on the way…with her (me!)

He works so hard for us, dealing with people who see any excuse to underpay/knock the price down/cancel with very short notice but he carries on.

The past few years have been very challenging in many ways and the rest of this year will be, with my first of two foot operations three weeks tomorrow (aaargh!).

Today’s prompt is one that just reminds me of him and how our lives have changed – for the better- since we met.

The lyrics are so appropriate.

“I’ve never felt good with permanent things 

Now I don’t want anything to change 

You can’t imagine the joy you bring 

My life won’t be the same 

And I’ll be there when you call 

I’ll pick you up if you should fall 

Cos I have never felt such inspiration 

Nobody else ever gave me more because 

You came, and changed the way I feel”

Day 25 – 30 Day Music Challenge 

By | July 29, 2017

A really funny one for today’s prompt, which is “A Song By An Artist Now Longer Living”.

Out of all the celebrity deaths last year, I think I found Victoria Wood’s, George Micheal’s, Prince’s and David Bowie’s most shocking.  

People I’d grown up either listening to or watching and it’s a reminder that you can have all the money in the world (we don’t btw), but when the Grim Reaper calls, that’s it.

I could’ve included a GM song but there is a more applicable prompt for that coming up so…

Recognise that image? It’s from Dancing In The Street, a cover that Mick Jagger and David Bowie performed for charity and I cannot watch the video without laughing, especially at the fun these two must have had making this video.

My absolute favourite bit is when Mick Jagger us dancing and David Bowie is around a corner sticking his leg out, I couldn’t find an image of that so:


Here’s a butt wriggle instead.

Watch the video here and if you do without laughing, watch again!! It’s fab! 

InstaLinkLove – Week 47 

By | July 29, 2017

Welcome to the forty seventh week of InstaLinkLove. 

The linky is with me for a while to enable Vicky to rest and enjoy her newly extended family life.

If you haven’t joined us before, then this is the easy-to-use linky which helps you get your Instagram posts a bit more interaction and interest. 

Thank you to everyone who linked up last week and welcome to those who are back for more and those who are first-timers.

This is a really straightforward, no stress (none of us need that in our lives!), easy to use linky. All you need to do is link up the URL from up to two of your most recent Instagram posts. I say most recent because this is better for interaction. 

All you need to do is find your Instagram account on-line, click on the photo that you want to link up and then copy and paste the link to that specific page.

The only condition is that you go over and like everyone else who links up. 

Here’s my favourites from last week’s link-up:

I love the variety of topics that are linked up each week, as ever it was hard to choose just four this week!

The linky will open at 6.30am on Saturday morning and then close on Sunday evening at 9.30pm. Then you have the rest of the week to make sure that you sit down for a moment and go through and ‘like’ and/or comment on all the others in the link.

Remember to add the hashtag #instalinklove to make it easier for everyone to find you.

Link up your Instagram posts below:

An InLinkz Link-up


Rules:

You can link up to 2 images per Instagram Account per week. 
 
It would also be great if you could share your post with the linky on Instagram using the hashtag #instalinklove to help grow the community. 

 
Thanks and really looking forward to seeing what you’ve been up to on Instagram this week x  

Day 24 – 30 Day Music Challenge 

By | July 28, 2017

The end is in sight! It’s Day 24 of the Music Challenge and the prompt is “A Band/Group You Wish Were Still Together”.

You may think I’d say Ultravox, but that would be too obvious, I could also have said Big Country but I don’t think anyone could replace Stuart Adamson, so I’m going for:

The song I’ve chosen King Of Pain is a strange one, the lyrics are really quite bizarre and I’m not sure what I was expecting from the video, having not seen it previously but it was as strange as I thought it would be – watch here.

It is a great tune, a sample of the lyrics:

“There’s a little black spot on the sun today

It’s the same old thing as yesterday

There’s a black hat caught in a high tree top

There’s a flag pole rag and the wind won’t stop

I have stood here before inside the pouring rain

With the world turning circles running ’round my brain.

I guess I’m always hoping that you’ll end this reign,

But it’s my destiny to be the king of pain…

There’s a fossil that’s trapped in a high cliff wall

That’s my soul up there.

There’s a dead salmon frozen in a waterfall

That’s my soul up there.

There’s a blue whale beached by a springtime’s ebb

That’s my soul up there.

There’s a butterfly trapped in a spider’s web

That’s my soul up there.
….

There’s a king on a throne with his eyes torn out

There’s a blind man looking for a shadow of doubt

There’s a rich man sleeping on a golden bed

There’s a skeleton choking on a crust of bread

King of pain…

There’s a red fox torn by a huntsman’s pack

That’s my soul up there.

There’s a black-winged gull with a broken back

That’s my soul up there.

There’s a little black spot on the sun today.

It’s the same old thing as yesterday,

I’ve stood here before inside the pouring rain

With the world turning circles running ’round my brain.

I guess I’m always hoping that you’ll end this reign,

But it’s my destiny to be the king of pain.”

I could have also chosen Synchronicity 2, which is just as wonderfully strange – that’s a bit more of an angry one, reminds me of commuting (!)

Which groups do you wish were still together?