The Disability Diaries (The Life of J1) : The Holiday - Ahoy Matey

Now we have taken the plunge and booked our Exciting Adventure to Florida next year there is still much researching and planning that is needed.

The flight seat is top priority and I think it has now come to the point where we are going to need to go and view what is on offer to ascertain what is going to be the best option for J1.  At this point in time I have concerns and I hope by going to actually see them they will be quelled.  For anyone wondering why this was not looked at before booking the flight - the answer is - it was.  We saw the picture of the seat insert to the chair and thought wonderful and fantastic.  Then, however, we got further details and it transpires that even though it should go up to a child age 11/12, because of the double hip operations J1 has suffered - which makes his hip width rather large - it will not fit him.  This leaves us with the adult option.  Thus, we need to go and check it out.

After much 'Google Map' time with my mum, I think we are happy that the hotels and areas that we have chosen as our destination are suitable with plenty of things to do for both adults and the children alike.  One of the activities we found is something that my mum has wanted to do for years (kid at heart my mum) - Go on a Pirate Ship.

A Pirate Ship you may ask?  Yes A Pirate Ship.  And at the beach you can do just such a thing.  After looking at the Captain Memo Pirate Ship website we couldn't see any information about whether it was wheelchair accessible.  What we did see however was an email address.  Pinging them an 'Ahoy There!' email outlining J1's accessibility issues in the morning I did not expect such a quick and friendly response.  

The same afternoon I obtained a reply stating that the ship would welcome J1 with open arms.  Was the wheelchair manual or electric, manual is easier to navigate around the ship.  Do not worry, they assured us, the crew is fully trained and can entertain children of all ages and abilities (or disabilities).  They advised us to go on a morning cruise as these tend to be quieter, thus allowing J1 easier movement around desk.  Book a few days in advance and we'll be having our faces painted pirate before we can sing an old sea shanty before you know it!

What a refreshing response this was.  I am so used to hearing, sorry we can not accommodate.  Or parts of the venue will be accessible but not all.  So now we are all really looking forward to this, and we have decided that if we go early enough into our week at the beach, if we love it we can always book and go again a few days later.

Ohhhh-Arrrrrrhhhhh Matey's!

The Disability Diaries (The Life of J1) : The Holiday of a Lifetime

I have indicated in previous posts that things have been getting tough with J1 in ways other than his physical disabilities.  I do not mean for J1, but for me.

 

J1 is developing a fantastic sense of real awareness which is wonderful in so many ways.  The downside to this is that he is also developing the understanding of frustration.  The understanding of things he can not do, that other children around him can.  Things he would like to do but physically is unable to achieve.

 

For me, this lead to trying to explain why he can not do things as easily as others may be able too.  To trying to remind him with gusto of all the things he can do.  To desperately try and think of things that we can do, altogether, so that he doesn't have to worry about not being able to join in with his brother or friends.

 

To J1, I have been a cheerleader of positivity and 'can do'.  In private I have cried, felt frustrated myself and very low.  It kick started that anger only induced by the feeling of extreme unfairness.  The feeling of looking for someone to take responsibility for what happened to J1, only to find that is as productive as trying to climb a mountain made of fine ash.

 

I went along to my doctor, having seen the signs of a slippery slope approaching, who referred me to a good counsellor.  From this some of the negativity has subsided.  This teamed with the sheer inspiration and opinion defying wonder that was the London 2012 Paralympic Games has propelled my energy back into being more proactive.

 

We thought about what we could do, as a family that would be amazing.  Something mammoth that would stay with the boys forever.  I knew what I wanted to do.  Have wanted to do for sometime.  Something that would be a big undertaking, requiring a lot of research, a lot of phone calls, a lot working with other people to make it happen.  A lot of saving.

 

We wanted Florida.  We wanted Disney, Universal, Seaworld, Water parks.  We wanted the holiday of a lifetime.  So we decided it is time to make it happen. 

 

After weeks of browsing hotels, for those with suitable rooms, amenities, environments we narrowed it down.  After numerous phone calls to the airlines 'special assistance' hotline regarding specialist flight seats, hold capacity (as J1's chair does not collapse), and what we could do with regard to changing J1's pad on the flight - we decided on a date to go.  After contacting many transport companies to find one with a wheelchair adapted vehicle that could also seat five additional passengers, plus luggage we decided on where we wanted our transfer too.

 

We built our dream holiday. 

 

We are making it happen.

 

We are going to take that leap of faith and hope that the people on the other end of the telephone are correct in what they are saying and that in reality we do not find ourselves facing a whole heap of challenges.  The biggest predicament so far has been the flight seat.  The childs flight seat would be ideal for J1, but already at 8 years old he is too big for it.  So we are having to rely on the different adult version.  I hope that the transport company have fully understood that J1 has to go in the car, in the wheelchair and the wheelchair must be fixed as a seat itself.  I hope that the hotel have reserved the 'accessible' room and do not just allocate it 'if it is available' when we arrive as we have read about in some cases before.  We can only hope that we were firm and clear enough in our phone calls.  We can only hope, because if we did anymore than that we would never have made the decision to actually do it. 

 

So, with sheer excitement welling in our belly, we are going to a place where J1 can get on the rides (well, most suitable ones of course - I don't think The Hulk will be sporting a wheelchair carriage but who cares we'll be in the marvel, magical land of Florida!).  We are going to a place where, for the boys, the characters they watch on TV will be real life.  We are going to a place where we know we will only need shorts and t.shirts and suncream.  

 

For three weeks we will take a step outside of the reality of life and build memories to stay with us all forever.  Roll on 2013 - watch out Orlando and Clearwater Beach we are on our way.

Hopes and Aims - Third Quarter Review

Wow.

September.  Already.

This means that we are three quarters of the way through the year.  Scary.

It also means it is time that I review and evaluate my 'Hopes and Aims for 2012' - as originated in January as part of the Groovy Mums initiative with the fabulous Kate on Thin Ice.

Deep breath - here goes with updates on the outstanding items since the last quarterly review :

 

Family

 

- Continue to encourage J1 to try new activities and adventures to help with his fine and gross motor skills and his speech

 

We are hoping that J1 will continue to develop his speech and sense of humour with his class at school during this new academic year.  He has already come home and told me a knock knock joke this week so I am hopeful!  We are also encouraging him to go to after school club again (although it didn't take much encouragement - thankfully he was raring to go) and to join in with the schools Boccia programme.  He loves Ten Pin Bowling so think he will really enjoy this.  If he takes to it a Boccia kit might be a good idea to notify Father Christmas with.

- Be more vigilant with J1's home physiotherapy, even though he complains

 

J1 seems to be having increased tension in his right leg which is a very bad sign, so this has been an absolute must.  We are also ensuring that we are getting clear and positive updates that he is receiving daily physiotherapy, in some form or another, at school.  We have also taken steps to be put into the Government 'Direct Payments' scheme (this isn't payment in finance.  It is 'hours' that you can acquire and use on things best for your child - ultimately it means you have much more control over the professional help you think your child needs as you 'spend' the hours in the right place.)  However, it is a long process of which we are only at the very beginning.

 

 

- Potty train J2

 

This has started and is going quite well.  We are using 'big boy' pants throughout the day and have been doing so for about a week.  Overall we are doing very well, including a whole 'dry' day at Nursery.  It has been handy that the weather has been warm enough to get washing out to dry on the line so any accidents have been easily sorted.  I am a very proud Mummy.

 

- Start weekly swim sessions with J2 again

 

This got postponed over the Summer Holidays due to the sheer volume of holiday makers using our local facilities.  This is one of the hazards of living in a seaside town.  However, now school has resumed and the term time schedule is back in place swimming will once again feature in our week.  The good thing is that J2 has been asking to go, so he must really enjoy it.

 

 

- Start saving for a big family holiday

 

I am pleased, excited and elated to report that not only did we start saving for our big family holiday - we have booked it!  It has taken much researching, phone calls and information seeking with regards to accommodating J1's needs, but we took the plunge and went for it.  Next year we will be meeting Mickey and Minne in Florida.  Much list making and planning to commence over the next few months.

- Child - proof new garden for the kids to use in spring

 

I am exceptionally pleased with the progress made on the garden in our new home over the summer.  I have written specific updates previously regarding this and am planning a new one (with photographs of course) soon - watch this space.

 

 

Personal

 

- Read at least 1 book a month

 

My aim was 12 books in 12 months and so far I am on track.  My current read is Jodi Picoult 'House Rules' which is very good.  I am thinking of doing a round up review at the end of the year on the 12 books I have read over the year.

 

 

- Try and run twice a week, establish some safe routes

This aim has manifested itself into a real hobby once again and I am still thoroughly enjoying it.  I am now back out running after a month of being forced to stop due to damaging my Patella Tendon.  I have got a 10K race on Sunday in a very pretty country village and was thrilled to smash my PB for 5K during my last Summer Series race in August.  I have also just had notification that entries are open for our local Half Marathon in March so will be signing up for that.  In the meantime the 'big race' I am preparing for is the BUPA Great South Run in October.

 

 

- Treat self to a spa afternoon once every 3 months

 

This has categorically not been happening.  However I have got a date for a fortnights time pencilled in with a friend so fingers crossed a couple of hours relaxing is on the horizon.

 

 

- Plan one weekend away a year, just Hubby and Me

 

This is happening, in conjunction with the BUPA Great South Run.  My parents have offered babysitting services so that The Hubby and I can travel to Portsmouth on Saturday morning and return on Monday.  Let's hope this fine weather continues until then.

 

 

- Try and be more positive on believing in what I can achieve

 

The Olympics and Paralympics legacies have brought this to light and made me think about it alot of late.  The running certainly helps with this too.  When I think to how I started, to how I have progressed lots more seems possible.  I believe this is also showing in the fact that I have started to not only write but publish some fictional writing.  I keep remembering that time ticks away and you never get that back so make the most of it, with whatever set of circumstances you have facing you.

 

In general I am just trying to be more proactive.  I have taken steps with regard to several things for J1, for example arranging demonstrations and getting quotes in for a specialist bike (demo was brilliant) and mobile hoist (a necessity).  I have to acknowledge that he is going to need more specialist items as he grows, as hard as that (still) is to accept.  He needs them and I am the one that has to ensure he has everything possible to make his life as easy, full and social as it can be.

What Has Made Me Cheerful This Week?

The return of an abcess has taken the wind out of my sails a little today.  In addition to this I think the muggy night sent the option of a comfortable sleep for J2 into space, so we are running a little under fuelled. 

So, what better time than to think about all the positive things from the week, and boy it has been a busy and active week!  So without further ado, these are my multitude of reasons to be Cheerful this week.

1. BritMums Live 2012 was everything that it hyped itself up to be.  Two intense but laughter filled days were spent at a beautiful venue in the heart of London.  I came away with new friendships, lots of information, a tonne of goody bags and a photograph of myself with Ruby Wax.

2. My wonderful and generous husband booked me into a very swish hotel, The Montcalm, next door to the venue as a surprise.  It was so nice to know that I did not have to trot around London getting back to the hotel.  The very nice receptionist also upgraded me to a Club Suite so I felt even more spoilt.  If we could have taken a time machine to extend the length of the evening it would have been lovely if the Hubby could have indulged with me.

3. As another surprise The Hubby came and picked me up from the event on Saturday night from the doors of the venue.  This was much appreciated as I could barely carry all the bags of freebies accumulated over the course of two days and I am not sure I would have made it to the station without the assistance of a taxi.  It was such a heartwarming moment, although feeling sad at leaving some amazing women and a plethora of memories made, to walk out and see them smiling faces of the Hubby and Children.

4. Having a short break away is and was fantastic, but there is nothing like some time away from home and your family to make you want to get back to them.  I do love (and require) some 'alone' time every now and then but chaos of everyday SAHM life does keep me fit and young at heart.

5. The last two months have been extremely hectic, busy and social.  So it is with a small 'Oh my word' that I find myself with only a week to get packed for our holiday.  However, I like it when good things creep up on you because we now have a week of excitement before we depart, which will fly for me as I descend into a frenzied week of washing, ironing, lists, purchasing and packing.

6. We confirmed that we have managed to get a 'Wheelchair Bike' for our holiday for J1.  I will never forget the excitement in his voice when he said 'Daddy and Bob-Bob [Uncle] will ride with me!'

7. We confirmed that we have got places booked on the High Wire Challenge (post will come out of that I am sure).

8. I have got my first 5K race on Friday night.  I am running well into 5K comfortably now so I am really looking forward to it.  It will be good to log a time so that over the next few weeks, when I have got various 5K races signed up I can see if I can beat it.

9. A very dear friend, that sadly suffered a miscarriage earlier this year confided that she is 14 weeks pregnant.  I am thrilled beyond belief for her and her husband.

10.  J2 and I found a fantastic 'J2 age appropriate' park, just a five minute walk from our house.  Anything that burns of some of J2's copious amounts of energy is always a positive thing.  Let's hope that the Summer might decide to make a more permanent appearance soon.

For other mood lifting posts fly over to Michelle at Mummy From The Heart.

Dear Boys - Letter of Life 1 (Family Friday)

My Dear Boys

This blog was started to give you a written memory of your childhood.  As the blog is developing it is becoming more than that, because as well as accounting for our time and memories together, I am finding that I am enjoying writing about parenting from The Mother Ducks perspective and that is helping Mummy keep a clearer mind and is really quite therapeutic.  Good for Mummy therefore Good for Daddy and Good for Children!

However, I do want to keep a good memory book for you boys so I am going to try and do it in this format, my Dear Boys letters.  Let's see how it goes shall we.  Good.  Then let's get started.

This week we have mostly been... on our annual family caravan holiday.  By the time you read this, that sentence should make you smile and hopefully say 'oh we've got one of those coming up!'  What made this one so special was that Nanny and Grandad were again with us on this break, Daddy didn't have 'work to do' so was there both in body and mind, J2 was no longer just a sleeping and eating bubba (sometimes throughout the holiday this was seen as a positive and negative!) but best of all we discovered that there is such a thing as an 'Adapted Caravan' so we could wheel J1 in and move him around the van just as everyone else could!

Now this letter isn't going to be a blow by blow account of our day to day activities, number one that isn't interesting for anyone and number two I just don't have the time, but I like to look at things more in a 'What have we learned from this experience?' manner so here we go:

We learned that both you boys love to swim.  And mummy loves you to swim because it uses up pots of energy and J2 was having the best naps in the afternoon.  Unfortunately our house doesn't have a swimming pool though.  We also learned that both you boys prefer to have Daddy in the swimming pool, this suits Mummy as she learned she really is turning into her mother when she heard herself bellow 'Stop getting my hair wet!' as Daddy and J1 blasted her with the water gun.

We learned that J2 can hold his own in the Playground and even at 18 months old went for the biggest bit of equipment with no fear.  I suspect that this fearless gusto is not going to subside as you get older...

We learned that with or without remnants of Hurricane Katia, at the Races you WILL get wind burn on your face.  I wish I had a photo of us all glowing after Day One of the Races, but maybe luckily for you two, I don't.  We also learned that Daddy's habit of talking to anyone and everyone can pay off when you get a 60-1 tip that comes in.  A final point about the Races is that when Mummy has marked a horse because it's what she always says to J1 (Too Many Questions!) you should never change at your mind at the last minute, because it will come romping home and be 18-1 (not that I was or still am bitter about it...)

We learned that Mummy and Nanny enjoy an hour at the Bingo, just because it's 60 minutes of peace and quiet, but, if the Bingo caller is too fast they can't keep up and resort to collapsing in fits of giggles and getting glared at by the 'serious' players (although how you can be a 'serious player' when there are only 20 people playing is a bit of a mystery to me).

We learned that when you are taking a caravan holiday with 2 children that don't sleep through the night, the whole party will need matchsticks (and/or strong coffee) to keep their eyes open in the morning.

We learned that our two beautiful boys have the ability to make us smile, no matter how tired, wind burnt, jaded about missed horses, told off at Bingo, bad hair day subjected to we are and nothing beats that.

To our next family holiday.

All my love - Mum. xxx

(BTW I am aware that this is a Family Friday post being blogged on Saturday but we didn't get back until yesterday and there was much sorting and washing to do!)

A Holiday, A Caravan, A Predicted Hurricane (well remnants of...) - Oh typical!

Our family hasn't done much holiday wise this year due to having a [fabulous] wedding in March and trying to sort out space issues in our house and making the garden usable (back) and pretty (front).  

However, we did decide to keep to our annual mid-week break to a Horse Racing festival (J1 loves it, the horses are big enough for him to see, and the excitement of the races and everyone cheering very much pleases him plus it gives me 5 days of remembering my childhood caravan holidays!)

As noted in the post 'Holidays - The Military Operation' any break away requires much precision planning and effort so to actually get to the holiday in question, I believe, always feels much more appreciated when you have children (or have had to save really really hard for it of course).  But in that, comes the overwhelming need for it to be perfect. 

The biggest issue with a UK holiday is of course 'The Weather'.  As mentioned in many of my blogs the British weather is the most unpredictable thing on the planet and although in your heart you know that days out will be blighted by rain, special plans will be thwarted by snow and holidays planned in a caravan will come with a 'Hurricane Warning' - WHAT THE beep beep beep!!?

Yes, I have just watched the weather report and we currently have a 'Severe Weather Warning' for wind and persistent rain, courtesy of Hurricane Katia.  I am sorry Katia, did you not just hear me saying we were going to spend the week in a Caravan?!

Now I don't like to moan but, COME ON!  One week is all I ask for, actually not even a whole week, five short days for me and my family to enjoy a change of scenery and a bit of fun.  We are going to be spending the majority of our week on an open plain, open air racecourse, persistent rain and gale force winds are just not ideal.

So herein lies the point of this post, a little hands clasped together, look to the sky to the Gods of Weather plead, 'Let the weather reporters be wrong'!

And if they are not... wish us luck!

Holidays - The Military Operation

Holidays.  It's something we look forward to all year (and depending on how extravagant the holiday is, save for all year, sometimes longer).  We look excitedly and longingly at the brochures through the cold winter months and keep in mind as we trudge through snow on the school run that it is only X number of weeks to go until 'The Holiday'.  After a while and as the date draws closer and it becomes more important, that is how it becomes referred to within our household 'The Holiday'.
The word 'Holiday' should be filled with connotations of joy, happiness and pleasure.  When I was younger 'Holiday' meant to me two weeks of running around the swimming pool all day and spending your hard saved pocket money in the arcade on the 2p machines in the evening.  I loved it and have many happy memories.  And of course being a child I just arrived, I never had to think about all the work that went into packing us up and getting us away with all the 'right stuff'.  It was just there, in a case in my two week temporary bedroom!   

However, I have found, more as I have become a mother to two children I must say, and a wife (thankfully only to one man) that the word 'Holiday' firstly now evokes other thoughts.  Prior to the excited 'Let's go!' ethos that 'The Holiday' requires I must set up a precision schedule. 

This list includes, but is not limited to; list making, washing, drying, ironing, setting aside and ensuring ear-marked clothes do not get worn, packing, cleaning, fridge clearing (and quite often food shopping, because we have an 18 month old and my rule is to only holiday in the UK until he doesn't need pushing / carrying everywhere or walks where we want him to, doesn't cry every 60 seconds, and isn't hanging on my leg for a majority of the day) and all of that quite frankly resembles something of a Military Operation. 

And it can be quite exhausting because you do not suddenly get a free day to do this.  No it must be fitted in around all of the normal day to day stuff.  Not that I am saying J2 doesn't try and be helpful, yes he happily pulls all of my nicely pressed clothes out of the suitcase and to be fair does replace them... in a screwed up ball.  And despite mentioning all of the aforementioned tasks to Hubby, that doesn't seem to translate in man world, that I need more time (and I am assured by several girlfriends that this is the case in all of their households to, so must not be taken as a slant on my Hubby!)

I have got friends of course that don't bother with this, but seeing the amount of stress they put on themselves as D Day approaches, I am much more inclined to go with the small bit of stress relating to finding the extra time to be organised.  I could forgo the cleaning and tidying before we leave, but do I want to return from a lovely break to walk into a load of mess and immediately have the hackles on my back shoot up?  Do I want to walk in and find washing up moulding in the bowl or the house stinking because the fridge didn't get any attention?  No, so Military Operation it is for me and I have to say it's always worth it (maybe the Hubby doesn't think so as he gets bellowed at for wearing an 'earmarked shirt') but hey!  

But once it is done I can have a couple of days squealing with the kids and showing them where we are going.  I can see the cases packed and stacked, the food box nestling content in the corner and smell the polish has been out and feel proud.  Then I can really get that child hood feeling of looking forward to the 'Holiday' - and yes, I still go with my 2p purse!