Four - That Grand Old Age

Once again, I was astounded that another whole year had passed since I was attempting to find cards with SON and the appropriate age on.  J2 and I had made it through another 365 days, to the grand old age of four.

 

In 2013 when the impending age of three loomed I looked forward to it with the naïve hopefulness that, like in that legendary episode of Harry Enfield when Kevin turns from boy to teenager - but with the reverse effect - my tantrum throwing, stubborn little red head would turn into a polite, mindful little boy.

 

'When they get to three, they get easier.' I had heard almost everyone say. 

 

Hopeful.  Ever hopeful.

 

As you may have guessed this, of course, did not happen.  In fact I would dare to say that for the first six months of being three, he actually got worse.  However, things seemed to calm back down to a more manageable level for the latter six months.

 

At the ripe old age of four, J2 knows everything.  And is so unbelievably verbose he has no qualms in telling me, and most other people this in a four year old fashion.  He also has already established, to frustrating perfection, that amazing male art of 'selective hearing'.

 

Now don't get me wrong.  We have good days.  Those wonderful times when you can dare to think to yourself 'Houston I think we have turned a corner.' but more often than not, days are filled with drawn battle lines.  In a way this is fun.  I like to see my boy argue his case and try to negotiate his way out of trouble or into doing whatever he wants.  I think this could serve him as a good trait in the future if he hones it properly.  However, I do not appreciate it when we are in the middle of the supermarket and he is testing this skill out.

 

Most people take to J2 well.  He is a 'cheeky chappy' and of course I can see how that little grin and quirky comment will make you laugh and love him.  It makes me laugh and love him.  But when you see me snap 'Will you please - just do as I ask!', please remember I have been dealing with that 'cheeky chappy' and his disinterest in doing anything I ask him too, all day.

 

This is not a complaining post, I thought I had written about J1 a lot of late and it was high time I put a little something on here for my little J2 because he is such a character.  Yes he is very hard work to entertain as he doesn't have the greatest attention span, but it is a pleasure to be able to do just the 'normal' stuff such as scooting and going to the park or to the cinema.  When he behaves of course.

 

To get a day where he does and we get our chores done (hands up, he is a fantastic helper) and then we can take a trip and randomly chose an activity is, priceless.  When I watch him hop onto J1's bed with a tissue to wipe his dribble, or correct his glasses or just give him a cuddle makes me swell with pride.  To hear the two of them trying to have a little conversation - there is nothing sweeter to my ears.

 

So, as four approached I didn't imagine a big overnight change.  Good job, I didn't get one.  But I also realised that four really is a big number.  School applications have been submitted and results are eagerly awaited.  Number and letter learning books are being featured for 15 minutes a day in an attempt to get him to try and focus for more than 30 seconds.  Bikes have been mastered (with stabilisers of course) and artwork by the bucket load arrives from nursery.

 

Do I long for the baby years again?  In all honesty no.  But do I think time is going a little too fast?  Maybe.  Unless we are having a really stubborn day, then school I think will be the best place for him to learn some discipline that I am struggling to get through to him.

 

He is a character, our youngest boy, who is very into Mr Men and the only way to sum him up :

 

Mr Unique.

 

The Disability Diaries (The Life of J1) : The Long Learning Process

Following our accidental 'Diagnosis Day' (The Disability Diaries (The Life of J1) : Diagnosis Day or Finding Out by Accident) the life of J1 and myself became a long learning process, that continues for us all to this day, as every day can present new and unusual challenges. 


On top of all the usual learning processes that comes with having your first baby, I had to learn induct us into a whole new world, our whole new world.  There was a new lingo to learn; disability; special needs; physiotherapy, occupational therapy, speech and language therapy, paediatric specialists, hi and low muscle tone, melaklonic jerks...it goes on.  A new day to day routine to establish which included 3-4 sets of physiotherapy, hydro pool therapy sessions, sensory sessions and a whole multitude of doctor and hospital appointments.

First of all I had to learn what Cerebral Palsy even was, I used wonderful charity sites such as Scope and Cerebra.  But since CP is such a wide and varying condition it was difficult to get any real solid information, what I did learn was that it isn't a degenerative condition, good news, but that until J1 started to grow it would be difficult to ascertain how he would be affected.


I found it ironic that a condition which would probably affect J1's learning capabilities, meant the whole family all found themselves needing to learn a whole new way of life.  Before J1 started school, when you are in the usual stage of being with your baby 24/7 I would struggle to think of ways to fill our days (other than the medical sessions).  I put off trying to meet with friends with able bodied children because it would completely send J1 into a freak out, and once he got into one it was almost impossible to draw him out of it.  Plus, again I didn't want to see all the milestone he wasn't hitting.  Also I felt a guilt towards them, that by us trying to join in it held them back. 

The only people that J1 would settle with was my parents so we spent most of our social time with them.  I did discover however, that J1 did like to walk around the shops, it would kind of mesmerise him and that became something we would do often. 

One thing we are very lucky with is that J1 can eat, properly, and he so enjoys it.  So many in his school classes and groups do not have this pleasure, instead having to be tube fed, and for this I am so grateful.  I remember the professionals always being so surprised.  This is something we have always been so proud of for him and so happy that he can get true enjoyment from it.  And of course that lent itself to the activity of 'going for lunch' or 'going for cake' and J1 would always be such (and still is) an angel in restaurants and cafes.  Whilst other mum's ran around trying to get their children to sit and eat nicely and look harassed this was something we were good at.  People used to comment on how you could see how much he was enjoying it; that was our 'adventureland'.

It is a constant learning process, going on holiday that was another eye opener, we can not just 'book' holidays.  We have to know that the rooms will be suitable, that the area will be flat, that the beach will be accessible, that we can hire (although some airlines do not have them so even possibly buy or rent - which is far from cheap) a special flight seat for the aeroplane and that they will have wheelchair accessible vehicles for transport once we arrive.  

Before we go on a day out we have to ensure that the parking isn't on mud, or has an accessible area, that is is relatively flat, that there are adequate facilities where we will be able to change J1's pad (the ideal thing is a 'changing place' these are RARE, usually a 'disabled toilet' is still for an able bodied person and our choice is to leave him in a wet or dirty pad, or change him on the floor - I believe this is unacceptable but if you ask most places as far as they are concerned they are providing adequate facilities as stated by the law, i.e the bare minimum).

The biggest shocker in the learning process always comes when something happens that you just didn't consider you would be dealing with on that diagnosis day.  Like, because J1 can't walk, his hips start to form in the wrong way, the bones start to mould into the wrong shape and it becomes painful for him to just sit.  This has resulted in two massive and rather harrowing hip operations.  One when he was four and one just last November.  Following the huge operation he then has to suffer 6 weeks in a double leg cast.  I would rather have my own arms cut off than for him to have to go through that, but he has, twice.  Sadly we can't guarantee that he won't have to suffer it again either, the one thing that can undo the work undertaken already is rapid growth spurts and J1 certainly has those.  And the operations help but do not fully solve the issues.

You learn to help soothe him when he is on morphine for the pain in hospital.  You learn how to move someone that has had massive surgery on their hip in a double leg cast when you need to change and wash them or just take the pressure off of their bum and back.  You learn as they get older the leg casts have to be set so wide, they do not fit through normal doorways and are bound to one room for six weeks.  You learn how to make that room a fun entertainment centre through the day, and as cosy as possible for long uncomfortable nights.  You learn you need friends and family to visit to buoy you all up.

You learn to deal with all these things because you have too in order to make life as easy, fun and special as possible everyday.  But you don't realise that at the beginning.  You learn that too. 

You also learn to count your blessings for everytime J1 does hit a milestone I want to throw a party for it, I see that it is a miracle and when J2 hits his milestones that is a miracle just as much, I think about their little amazing brains processing and filtering information and absorbing.  Sometimes I don't think parents get to appreciate that as much as they would like.

Everyday I learn something new about J1, he shouldn't eat after 7pm otherwise his chances of reflux increases, that if he doesn't get physio or some form of exercise and good diet throughout the day it can cause him constipation for days, that he remembers things that were said from months previously and recites it in his sleep, but the most treasured thing I have learned is that J1 never fails to surprise or amaze me at least once a day and his progress is something I love learning about.