So much has happened over the last month.  We had a lovely holiday in Greece, which I will write about when I gather myself together enough.  It is sometimes only when you go on a holiday like that away from all the stresses, strains and distractions of reality that you realise how much you needed the break.  This was definitely the case for me this year, and partly why it has taken me so long to come back here.

Having the break gave me time to think and to consider what really matters and what changes we might be able to make to help B with secondary school, to manage my stress and anxiety levels and to try to balance family and work in a way that works for all of us.

We have been back from our holiday for about 2 weeks and the first week was an absolute whirlwind.  We went to the Paralympics, which was absolutely fantastic and B started his new school.

School has, as predicted, been a huge change and has caused all of us some degree of stress.   B has handled it really well.  He seems quite happy about going to school, but his anxieties are coming out at the end of the day.  He is quite confused about what homework he has and when.  It is causing stress because he wants to come home and shut himself away and escape into his computer games, but I am seen as the big bad wolf because I want him to tell me about school so that I can help him with planning and homework.  I am aslo trying to identify whether or not he can see what is going on.  On the face of it B says it is all fine and he can see everything, but when I look in his books and talk about homework it is clear that he can’t see some of the things and he is still having to handwrite notes, which means that he isn’t going to be able to read them.

I have sent a couple of emails to the school and already had one meeting with the SENCO (Special Needs Co-ordinator).  The responses, so far, seem very positive, so we are very hopeful that the issues will be resolved and that B will be fine, but at the moment it is a full-time job for me to support the process and to remain calm enough and sure enough to deal with the evenings explosions of pent up emotions and stress.

Which brings me to the other big change for the next few months.  I had been so stressed before the summer and was struggling to balance work and all my other commitments.  The stress was meaning that I wasn’t able to be as patient as I would like with the children and was often feeling too overwhelmed myself to support B with his anxieties.  D and I talked about solutions while we were away and decided that for the time being I should stop work.

Part of the reason for not writing the blog for a few weeks was because I needed to discuss this with the Trustees at work.  The details are not clear yet, but I am clear that I cannot work for the next few months.

I will write more about some of these things in the next few weeks as I think these decisions and the negotiations we are having with school are so telling about the struggles that disabled people have.  In our family we have to balance the complexities of our visual impairment as parents, with the needs of the children, ensuring their visual needs are met in school, finding our way through the fog of aspergers syndrome with B and managing my struggles with depression and anxiety.  We do all this whilst trying to work, run a house, negotiate and jump through the hoops of the benefits and special educational needs system and give the children a range of life experiences.  When I write it like this I realise that sometimes its inevitable that the wheels come off and we have to drop one of the balls.  It does make me think when this happens, of the number of families who are dealing with different, but equally demanding issues and the judgements that some people make about scroungers and lay-abouts.  If you had to drop one of the above balls would it be your job or the decision to support your child in their education?

I hope to get back to some more regular blogging soon, but am also trying to have some time for me in order to keep the strength to support B.

Keep your fingures crossed and wish us luck

Thanks for reading

Talking about this in advance helps us to manage expectations and to talk with the children about making sure that we all have a nice time and acomodate each other.

So here are our wish-lists for our holiday in Skiathos:

Swimming in the sea – photo from google images

M – 9 year-old

Eat
Read books
Swim in the pool and in the sea
Play
Have fun
Hire a boat
Be in Charge
Rowing
Go on a Pedalo
Go to an empty beach

Skiathos motor boat (image from Skiathos Marine Services website)

B – 11 year-old

Go to Mystique Beach because there are rocks to explore
Go to sunset beach
Hire a motor boat
Go to Arkos Island on the boat
Go to Skiathos town and a get a small boat over to Tsougaria Island
Get a small boat to Lalaria to see the rocks and the white pebles

Me Drink a cocktail whilst watching the sun set.
Go to Skiathos town for dinner one evening.
Eat Baklava, lamb, aubergines, humous, greek salad, stuffed peppers and lots of fish – (not all at the same time)
survive the inevitable motor boat trip
To laze in the shallows of the cool waters, staring up at a clear blue sky and dream
To do the things the children want to do – with the exeception of M being in charge – although if things go well we do let them have an evening each where they choose where we eat.

beach at Tsougaria island

D Well, I haven’t asked him yet and if I do he will probably just ask what the rest of us want to do and say – ‘that’s fine’, which is OK on one one level, but on another its so infuriating, because we just want to know what his opinion is rather than wondering if he is really happy or just trying to please all of us. Anyway, I do know that he will like the idea of hiring a boat.  He will also prefer to be by the sea rather than by a pool.  He will want chilled beer in glasses straight out of the freezer and he will want to eat dinner at restaurants where he can hear the sound of the sea as often as he can.

Ok – I was mainly right – I just asked him – He wants to hire the boat, go to Skiathos Town, Go to quiet beaches and Go to another island.

So, these lists are looking good, as on paper, it looks as though we all want similar things, so hopefully there shouldn’t be too many problems / fallings out / difficult negotiations etc.  We just have to keep our fingers crossed that the children don’t decide to make too much of a fuss about walking to the various beaches and eating establishments and that we don’t end up cast adrift in the middle of the mediterranean in a tiny 25 hp motorboat. So, with that I will climb the stairs, turf the cat out of the suitcase and resume packing our swim stuff, sun screen and towels. See you all in a couple of weeks.

PS – Don’t forget to watch the Paralympics opening ceremony – I think one of my mates is performing – but shssssssh – don’t tell !!

The pictures I have chosen can not be considered to be great photographic art, in fact they were all taken using my phone and a couple whilst giggling a lot, so they are quite blurred, but to me they tell a story of last summer’s holiday and highlight many of the emotions that holiday involved.

Last summer we went on an amazing trip to visit my husband’s twin brother and his family who live near Seattle on the west coast of America.

In the days and weeks leading up to the trip there was excitement at the prospect of travelling to america and seeing the children’s cousins and visiting their home, the thoughts of seeing lots of new places.

There was anticipation, nerves and anxiety about how the children would manage a long flight (9.5 hours) coupled with an 8 hour time difference.  I was anxious about how my Son with aspergers would cope with all these changes and with the fact that we were going to be travelling around to lots of different and unfamiliar places.  We weren’t staying in our own house, so would not be in control of all the plans.

There was boredom and frustration on the flight, relief at arriving.  There was joy at seeing their cousins, excitement arriving at the house, exploring the garden, sitting in the hot-tub, and friendship as the girls chatted and brushed hair as though they saw each other every week.

Then there was total exhaustion on the first night as the emotions finally overwhelmed someone:

Asleep complete with DS and stylus sill in her hand

We had an action packed 2 and a half weeks, mainly of excitement, the thrill of flying in a Sea Plane over Victoria Harbour on Vancouver Island. wonder at seeing whales diving in the ocean, boredom on a couple of long car journeys, relief as B seemed to take it all his stride.  Horror and awe at learning the story of the eruption of Mount St Helens in 1980.  Fun of spending time together, frustration when we discovered we were camping for 2 nights in a ‘dry’ county and the beer cooler was empty!

And finally love, in a brother / man kind of way – not that they would admit it – but the laughs we had, the nights out and the nights in sitting on the deck drinking beer or round a camp-fire on the edge of a lake with Mount St Helens in the background.

Mount St Helens and Silver Lake

Brothers on our last night out of the holiday

And then it was time to go  home.  Again, sadness that the children would all be another couple of years older before they see each other again, mixed with relief that everything had gone well and that we had all those happy memories and that the holiday had been such an amazing success and fantastic experience.

This post is linked to week 110 of The Gallery.  To find out more visit Sticky Fingers blog.

The Winners – Time 19.58.67

Senior Men’s trophy winner

My OH has no sight at all, but it doesn’t stop him doing anything.  I met him 17 years ago on a sailing holiday, we got on so well because we both enjoyed ski-ing and cycling and went on many different activity holidays together before the children were born.

D is an awesome ski-er.  He is fearless and can ski black runs!

He did his first 10K run about 5 years ago and since then he’s been hooked.  He runs regularly at our local 5k park-run and is running his 3rd half marathon in October.

The pictures above were taken at the Metro Athletic Championships in June.  I have written a post about that event here.

He ran a personal best time for 5000m and was over the moon to run it in under 20 minutes.  Not only did he win the race, but he was awarded the trophy for Senior Men for achieving the time.

Sport is something that everyone can take part in if they have the right opportunities.  Never under-estimate what you or someone else may be able to do.

Go over to Sticky fingers and check out some of the other entries to The Gallery.

Skiathos Town – photo credit – google images

So, we are off to Greece in a couple of weeks.  Holidays are a strange thing.  We spend lots of money on them.  The idea is to ‘get away from it all’ for a couple of weeks.  To do something different, to relax, have fun, break the routine.  Depending on choice this escape could involve sightseeing, a bit of activity, touring or simply lazing about on a beach doing as little as possible.

I have to admit, that I love the idea of holidays, I tend to over-romantisise them.  I think it is part of my desire to do everything perfectly and the result is often that I get so stressed in the run up to the trip that I wish I wasn’t going and / or that I come home feeling very let down, disappointed and feeling like I’ve failed myself and my family.

So why do it?  Why spend a heap of money and have all that stress in order to end up wishing I hadn’t?  Well, to be fair, it doesn’t always end like that.  There are many holidays where the stress has actually been worth it, and we’ve had a lovely time.  The children like going away.  We have got some lovely memories.  The children have seen different coutries and different places, experienced different food, which is all about them learning and developing.  My Son with aspergers does find going away quite difficult, but he still wants to do it.  He wants to see different places, he likes to know about the different currency and  as long as he is OK about doing it, we think it is a good way of learning how to cope with changes in routine and environments.

beach

We chose to go to Greece this summer because we have wanted to take the children for a long time, but had never got around to it until now.   Greece holds lots of memories for D and I.  It was my first family holiday abroad when I was 16.  It was where D and I met and it was the last holiday D and I went on before B was born and we haven’t been back since.  We have talked to the children about it and shown them pictures.  Last summer their cousins went to Skiathos and came back saying what a lovely time they’d had and showed off their beautiful photographs, so we talked to the children about it and decided we would give it a go this summer.

We chose the last 2 weeks of the summer holiday very specifically.  Partly it is actually quite a bit cheaper to go in those 2 weeks than earlier in the summer.  But, also we have been away at this time before and it has worked quite well.  It gives us something to look forward to during the holiday and it gives my Son plenty of time to unwind and relax after finishing school.  This year there was an added reason.  In addition to all of this we felt that having our trip to Greece at the end of the holiday might act as a bit of a distraction for B to give an alternative focus to that of starting High School.

So, In two weeks we are off and part of me wants to sit back and say YAY – I CAN’T WAIT. But, in reality that isn’t happening.  I’m very nervous.  B hasn’t really settled at all this summer.  The nerves about school are kicking in.  We had deliberately chosen to go away at the end of the summer because we thought the holiday might be a bit of a distraction from starting his new school.  But now I’m worrying that the plan might back-fire and it might just make him even more anxious.

beautiful blue sea

beach, rocks and blue sea

When we booked the holiday the children were both keen on the idea having seen the pictures of their cousins on beautiful empty beaches in beautiful clear blue water.  However, now they both seem less keen and are already questioning ‘how far is it to the beach?’ and ‘how hot will it be?’.

One of the things they were particularly keen on when they heard about their cousins’ holiday was the idea of hiring a small motor boat to chug about to isolated beaches and little islands.  This is still one of the things that they are asking about.  However this fills me with utter dread.  Don’t get me wrong – I love the idea of pootling about on clear blue water in a little boat to discover deserted beaches and I really want my children to have this experience because I know they will love it.  My 11yo boy will like nothing better than driving a boat and being in control of where he takes us.  Are you starting to get the picture?

Ok, I can’t see very well, which probably isn’t the best, but I could do it. – I’d drive VERY, VERY slowly.  I wouldn’t go too far from the coast – just far enough to avoid rocks, lilos and swimmers, and I would probably stop at the nearest deserted beach.  I would accept that I could live without an island – I’d just pretend I’d gone to an island.  But I’m afraid my children and Husband will not let this happen.  If we hire a boat I will not be allowed to control the driving, my Son will want to go fast, he will want to steer and decide where we go.  My husband will encourage this and tell me ‘its all fine’.  He will want a go at driving and will expect me and the children to give him directions.  He will want to go just that little bit further. So, all in all, the combination of an 11 year-old boy with aspergers, a dare-devil husband with no sight (he can ski black-runs), a nervous wreck of a Mummy and a 9 year-old drama-queen girl will make an interesting boating excursion.

So there you have it – I’m absolutely petrified of this responsibility yet I know it will happen.  Part of me wants it to happen, because I want us to enjoy the things that others do on holiday.  I am 99% certain we will be just as safe, if not safer, than anyone else who might hire one of these boats and take out a cooler full of lagers or kids who think its great to jump off rocks where the water isn’t deep enough, but I HATE the responsibility and I worry like hell about it.

Rocks and sea

I don’t know how my Son will cope with the heat.  We have all sorts of ideas about things we could do.  Snorkelling, collecting crabs and shells, taking photographs, walking through the pine forests, catching the boat to the local town, but all of this is only possible if we can all share the load and help to carry the lilos, water bottles, towels, beach mats, parasols, cameras, snorkels, sun-screen, books, sun-glasses, hats, beach-ball etc. etc. etc. and, my god, sometimes you would think we were asking the children to climb mount Everest with a 50 KG pack on, by the fuss they make if they are asked to carry a beach mat, towel and some of their ‘toys’.  It is at these points that I wonder why on earth we have done it.

Having said all of this, I guess, deep down I know through the moaning, my worries and the stress of packing, it is nearly always worth it.  We have some lovely memories and it is often the time of the year where I might get a few days where I can let my mind drift for a little while to the sound of the lapping waves and chirruping cicadas and to the smell of herbs.

Island view

empty beach

So, wish me luck and if you’re anywhere in the vicinity of Skiathos at the end of August stay well clear of any of the little chugging motor boats – You never know who might be driving!

I hope you’re all having a lovely holiday.  Why not pop over to Suzanne’s blog and read some other lovely stories or link your own.

Thank you for reading

All photos apart from the above badge are courtesy of google images.

We saw lots of animals including; a tiger, a leopard, penguins, cheetahs and giraffe.

I took lots of pictures and then I edited them on my Ipad.  Here are some of my favourites.

Giraffe

Lemur

Tiger

Zebra

meerkat

sleepy leopard

muching giraffe

lizzard – I can’t remember what sort

Green & Black Poisonous Dart Frog

Penguin

cute lemur

Great Grey Owl

Green Tree Snake

Cheetah

giraffe sharing dinner

Thank you for looking at my pictures of a nice day out.  Please leave me a comment to say if you liked them.  

“I’m confused” he said, so I asked what he was confused about. “I don’t know – I’m just confused and I don’t know why”. He could barely get the words out he was crying so much. I hate seeing him like this. I don’t know what to do.

I have several ideas about why he was crying and what is making him so confused, anxious and upset, but it’s very difficult to help when he isn’t sure what’s wrong. I didn’t want to assume too much and tell him that I knew what the matter was. I think however hard it is, he needs to find a way of identifying and owning his anxieties so I asked him whether he thought he was upset about an issue we’d had at bedtime with a new computer game not working as it should, which made him angry and which he wanted to sort before going to bed. He didn’t know if that was the problem. I asked if he might be sad about leaving his old school. Again, he didn’t know. I asked if he might have some worries about starting a new school. “I don’t know, I’m just confused”. We talked about missing his friends (his best friend had stayed the night before and we don’t know when they will see each other next because of family holidays and the boys are going to different schools in September). He couldn’t tell me if this was worrying him.

I think it is a mixture of all these things, but it is very difficult to talk about and help to identify the issues and to attempt to address them when B can’t identify them. I think he is so anxious and tired and the lack of routine and uncertainty of our day-to-day holiday plans are not helping.

I usually try to have some kind of plan for the summer, but this year I have struggled to engage B in making that plan. I’ve asked what he’d like to do and “I don’t know” has been the most common response. He’s spent even more time than usual in his room playing minecraft on the computer. I have let him do this more than usual because I know his anxieties are high and I don’t want to add to them, but equally, I know that if I do get him out and away from the computer for a bit he usually enjoys it.

So, it’s time for a plan I think, even if I have to make it, based on things I know he likes to do or that I think he will enjoy. I suspect that making the choices and decisions are a bit too much at the moment. So today I will write a plan, I will build in computer time and we will see if it helps.

I just wish I could know exactly what is worrying him so that I can give some reassurance.

Thank you for reading and following our journey 😊

I’ve walked past or through that park nearly every day for the past 13 years.  My children have played there, we’ve had picnics and walked with friends and their dogs.  I’ve taken the odd snap shot of the children and their friends in the past, but never really looked any further than the grass and play equipment.

The original intention of doing this was to try and find something different for my Son and I to do together during the holidays without spending a heap of money.  Unfortunately, so far B hasn’t really shown much interest.  Anxiety levels are riding high after finishing school and he isn’t really interested in doing much more than playing the Wii and watching Top Gear.  But I will continue to try.

So here are a couple of pictures of the beautiful flowers I saw.

To see what others have posted in The Galery you can visit the sticky fingers website.