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A series of Disability Diaries posts looking at travelling to Florida, USA with a disabled child.

Featuring.... This cool dude

This little monster

These awesome guys

 

And...this crazy lady!

2013 : Striving (#GetGrooving)

My last post considered what 2012 had been like for me and my family.  I was proud of our progress in most aspects of our life.  I, again, have had no time to sit down and write this week until now, but I have been thinking about what I would like to try and achieve in 2013. 

 

Participating in Kate on Thin Ice's #GetGrooving (Groovy Mums) helped me to focus my 2012 'Hopes and Aims' so I will be doing the same for 2013.  No one can predict the future.  How many of you have had things happen this year that you had no clue would ever occur?  Most I would think.  But a little planning never hurt anyone.  And things won't happen unless YOU make them.

 

With exception of all the normal things you hope a year will bring; good health; happiness for your friends and family; world peace; a lottery win; this post is all about the things that I can make, or help to make happen.

 

2013 Hopes and Aims

 

Family

 

* Holiday of a Lifetime - To really make it that.  As this is the only time, I believe, we will be able to take J1 on this holiday we need to make it count.  Do absolutely everything we ever dreamt of doing and on coming home, have not one single regret. 

 

* Bike Rides - With the award of a bike for J1, we will be able to do that very simple pleasure of going for a family bike ride.  I want to ensure we do this regularly.

 

* Physiotherapy - For J1's physical strengthening to continue to improve through vigilant physiotherapy at home and school.  Great progress has been made with this and it needs to continue as he is growing fast.

 

* Social - We have started to get out and about much more socially as a family and it has been fun and it will be lovely to keep this going. 

 

* Swimming - Again this another simple family activity that has been a little difficult for us to achieve.  However, we have found a swimming pool with reasonable disabled facilities and if we enlist extra hands we can do this as a family.  J2 is also scheduled to start swimming lessons in March.  Safety first for our little fearless one.

 

* Home - Continue to improve our home and garden, including de-cluttering.

 

Really these all come down to one thing - enjoying our time together as a family.

 

 

Personal

 

* Writing - I have a few writing goals for 2013 :

 

- Continue with Camomile Crescent

- Enter at least two writing competitions

- First draft of my novel (when J2 starts Nursery in April)

- To attend a writing workshop in January (booked) and Britmums in June

- Research the book industry in general

 

* Blogging

 

- Continue to blog at least 2-3 times a week

- Raise profile of Lynsey The Mother Duck, via Facebook, Twitter etc

- Get a personalised design for my blog

 

* Social Media & Charity Work

 

- Continue to help the Charity GRACE with their Social Media. 

- Set up a GRACE blog

- Learn more about Social Media as a profession

 

* Running

 

- Continue to run at least twice a week for general health and fitness and maintain weight

- Join a running club or set up a 'running buddies' scheme

- Try and set up a 5K race whereby all racers jog with someone in a wheelchair

- Enter 5K and 10K races all year

- Complete half marathon in March

 

There are also two from last year that are important to ensure happen again this coming year :

 

* A weekend for just The Hubby and I

* One Spa session every three months (only achieved one of those this year - must do better!)

 

Again this might seem like an exhausting list but I will be focusing on them in small bite size pieces.  Most things can be achieved with good organisation, clever use of time and a bit of determination.

 

Have a think about what you want from your year - those things that you can have control over.  What can you make happen?  Baby steps of progress can make the world of difference to a mind that is feeling low, and once you start, you never know what you can achieve.

 

If you need more inspiration take a look at all the posts over at Kate on Thin Ice and see how others are getting on!

 

 

 

 

 

2012 : Achievement

I have been intending to join in with Kate on Thin Ice and the fantastic #Get Grooving initiative for a few weeks now.  Time has not been on my side.  However, although I may not have penned my post, it has been formulating and evolving in my mind, so I am not surprised that at my first opportunity to power up the laptop I have felt compelled to get it written.

I first started joining in with the 'Groovy Mums' blog hop at the end of last year and into the beginning of 2012 because it was a way of tracking what I was doing with my life.  I was entering a second year of being a stay-at-home mum.  I was used to not getting up and going out to 'work' and settled into my 24/7 job of raising two children. 

I craved some structure however.  Groovy Mums encourages you to look at ways to improve things in your life, and subsequently the lives of those around you.  To take steps to improve yourself, no matter how small.  To think about what you want out of life and think about how you can get it.

At the beginning of the year I set down a list of Hopes and Aims for 2012.  It was quite an extensive list and incorporated aims for us as a family and for myself personally.  After my initial post I wondered if I had aimed for a little too much in one year, given that I have a severely disabled son and an extremely hot headed Toddler to look after.

Then I slapped myself on the wrist.  That sort of attitude was not going to get me anywhere.  Instead of looking at the lengthy wish list as a whole, I decided I would focus on one or two items each month.  I am not going to go into a long detailed run down of them all, there are various posts already with updates.  The long and short is I achieved them all bar TWO.  And with that I am pretty damn proud.

What I am more proud of is, as I have been thinking about all of this, the realisation of all the extra things that have been achieved this year.  Not just little insignificant things either.  Big things :

* I started publishing some fictional writing.  I have never done this in the past purely due to fear.  I have also started working on a few 'novel' ideas that have been rattling around in my mind.  I have subscribed to a Writing Magazine, which has introduced me to lots of ideas, information and the idea that I might enter work into competitions. 

* I attended my first blogging conference and met some wonderful fellow bloggers.  This was also a nerve-racking step but I am so glad I took it.  Roll on BritMums Live 2013.

* We took the bull by the horns and applied for some specialist equipment for J1.  These were things that we had only ever believed to be 'wish' items, but I am so happy that we persevered.  They are going to make such a huge difference to all of us because they will open up activities for us to all enjoy that we have never been able to before.

* We also took the plunge and booked a family holiday of a lifetime.  We could have always been 'put off' by the amount of research and fact finding it requires but many incidences this year have made me very aware of how grown up J1 is becoming and we became determined that it could be made to happen.

* The Hubby and I have both found an individual hobby each to enjoy.  Mine is running.  I set a goal of participating in The Great South Run in October and am pleased to say I completed it.  My next goal is our local Half Marathon in March.

* I have started doing some volunteer work for a fabulous cancer charity GRACE.

So I think, as we hurtle towards the end of 2012, that if I had to use one word to describe our year it would be 'Achievement'.  This is very pleasing and I would like to think that as a family we can give ourselves a big old pat on the back.

What word would sum up 2012 for you?

If you want to make changes to your life, no matter how big or small, take a look at the inspiring posts from Kate on Thin Ice.  Kate encourages you to always keep going, even if you feel you may be treading water.  When you think about it, usually turns out you are achieving more than you think.  Link your posts to inspire others, or get inspired if you are lacking motivation.

Now I need to start thinking about what we can achieve in 2013 - the possibilities really could be endless...

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!

What Has Made Me Cheerful This Week?

In line with my efforts at positive thinking it is time for :

 

Reasons to be Cheerful with Mummy From The Heart.

 

So, without further ado here are my reasons to be cheerful this week :

 

* J1 started back at school without tears or fretting.  This has continued into week number two, much to our delight.  Although he wasn't changing classes this year, the structure of make up of children and teachers / assistants has changed so it was as good as.  But, he seems to be thoroughly enjoying it and is coming home smiling, bubbly and cheeky.

 

* I have re-started with our healthy eating meal planning / cooking.  This seriously lapsed over the summer, probably due to the change in our daily routine.  Plus with my race approaching in October I need to be eating healthily as well as training so needed all round.  We have even been able to have some home-grown vegetables from the Greenhouse!

 

* As mentioned in yesterdays post 'The Disability Diaries - Holiday of a Lifetime' we have booked a fabulous vacation to Florida for next year.  This has boosted everybodies spirits and we are looking forward to it and planning with gusto.

 

* In preparation for the above holiday I have started potty training with J2.  We are having good and bad days but hopefully are heading in the right direction.  Watch this space.

 

* We recently purchased Annual Gold cards for our local Zoo as they were on a brilliant offer, so have been able to make the most of those in the last few days of warm summer weather.  The Hubby was even able to come this time so extra lovely.

 

* The boys and I had a wonderful afternoon of messy play in the garden at the weekend.  We did lots of hand and feet painting.  I am so pleased with how they have come out that I am thinking about framing them for the wall.

 

If you want to read about what has made other people cheerful this week head over to Mummy From The Heart.

 

 

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.