This weeks #Special Saturday theme is to just generally sum up what is going on in your own world this week. This is a good time to think about this because it is the last week of J1's school year. Just yesterday we went on a fantastic school trip to Colchester Zoo.
Colchester Zoo is very accessible for those with wheelchairs apart from a very few areas, which do have large, steep gradient hills to get up and down. However because there was a lot of volunteers we managed to overcome these. I would like to think about getting an annual pass for the Zoo next year, when J2 is three. Therefore I think that we are going to have to have a meeting with our wheelchair clinic about the possibility of getting some sort of motorised help for the chair.
This will also help with another problem we are now facing. Although we are extremely lucky to live by the sea, you can only access the lower sea promenade by significant hills. I am no longer able to get J1 up and down these on my own. To be honest even if both my mum and I push we struggle. This is very frustrating for all concerned, especially with the Summer Holidays imminent.
I am very much hoping that we do not have obstacles put in our way when we make this request. J1 has recently been weighed and measured (height) and he is on a par with an 11 year old. J1 is actually eight. Not being a particularly big person myself, it is hard to accept that I am unable to even take my son for a walk and ice cream along the sea wall by which we live.
As I mentioned, it is the end of the school year for J1. It has been a very different year for him as he went into a new class. We were worried about how he would cope. However, after only a short few weeks he had settled in well. The class has been good for J1 in a lot of ways. It has really helped his character to build. He is developing his own sense of humour and is no longer so timid of other mobile children his age. Up to this point he would meltdown if another child his age even said 'Hello'.
J1 does require a vast quantity of physiotherapy everyday however and there has been a few issues regarding this throughout the year. I think it is always something that I am going to have to keep a very close on eye and reiterate constantly to all those involved with his care. J1 can not move his own limbs with any real control. Thus we have to ensure that we do this for him. Can you imagine being set in one position for any length of time. Think about how many times you shift position on the sofa, or in the car or in bed. Remember that discomfort you feel if you wake up after a long sleep and go to stretch your leg? That is a constant threat for J1, moreso because of the metal plates he has in his hips.
Another challenge we are now starting for face as J1 is getting older is his awareness. This is not a bad thing by any means, it means his comprehension abilities are developing which is fantastic. But, the negative side to this is he is also becoming aware of all the things he can not do. He no longer wants to walk to the park with his brother. He doesn't want to go out in the garden when the other children play on the trampoline. He doesn't want to sit and have a drink with mummy in the local indoor play area while all the other children run around screaming and having fun. He doesn't want to sit and have an ice cream while everyone else goes on the rides at the pier. Who can blame him?
Luckily we have found a brilliant centre, quite local, that has some sensory rooms that he can enjoy. This is great for rainy days (and there are plenty of those at the moment). But other little activities that up to last year we could just about do (a few rides on the pier, getting him in the small gap on the trampoline) are no longer a viable option.
Therefore, it's time to spend this week thinking outside of the box and doing some research for fun things we can do over the six weeks break. We have got a 'wheelchair bike' demo in August, with the hope that we will be able to obtain one soon. J1 keeps asking to go for a bike ride, and absolutely adored it when we hired one on our recent trip. Hearing him giggle uncontrollably, like other children do in the park or on the rides or on the trampoline - priceless.
I am also looking into the possibility of getting a wheelchair swing for the garden. He thoroughly enjoys the one at school and would love to be able to take him in the garden to join in, every single day that we possibly can. He deserves that.
In summary a lot of development is happening in our Special Needs part of life. We have lots of calls to make, research to do and options to look at as everyday our wonderful little boy 'Grows Up'.
Join in Special Saturday by linking up on Facebook, Tweeting using the #Special Saturday, writing posts / note / odes. Anything you want to do to help raise awareness of living with Special Needs and how amazing, challenging and rewarding it is.
