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.