Saturday, 14 July 2012

Special Saturday : The Special Needs Part of Our Life

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.


  1. This was very interesting. Sometimes when I go to new child friendly places nowadays mainly because of reading your blog, I look around me and think, could this work for a disabled child/ child in a wheelchair? (Although obviously my understanding of all the variables/ different things needed is limited.)Don't really know why I'm telling you that, just I guess, that it's another way your Disability Diaries posts raise awareness, or have with me at least.

    It is such a shame that even the most simple pleasures such as going for a sea walk become difficult without the right equipment or additional help. If you don't mind me asking, do the local authority help provide you with some of the new equipment you need or is this something you have to fund yourself? x

    1. Knowing that it has made you think about that means that this blog has done what I set out to do - just make one person stop and think a little differently. Thank you MP.x

    2. Sorry, in answer to your question about equipment, it depends what type of equipment you want. A form of suitable equipment should be provided for your child, e.g wheelchair, if they need a special bed, shower chair, toileting system etc. Kind of think of it as, basic human rights stuff. However, I have been the victim of 'we have run out of money for this year' and having to 'make do with the best they have in stores at this time'. Equipment generally fits the purpose of what it is needed for, and always gratefully received. I can't let my mind wander to thinking about those children in underdeveloped countries that may have a condition similar to J1 that have nothing to aid / assist them. However, of course, costs are always at the forefront of every departments mind. There is not enough money to give you your 'pick', if you get my drift. Sometimes if there is something you particularly want (e.g a wheelchair) if you want a different one to what can be provided the LA can fund it to the cost of what would have been provided given you can fund the remainder yourself. Other items (e.g bike) are not provided, you have to purchase these yourself, or you can try approaching a / or several charities. They all have varying remits on what they can provide funding for.

  2. Yes as you saw my dd now has 7 weeks off and I have no idea how I am going to keep her and her brother happy for such a long stretch, perhaps we can swap ideas x

    1. Most certainly! It is J1's last day today. Am hoping the weather picks up!

  3. How utterly frustrating not to be able to take him for a walk along the sea front, and for J1, his growing awareness of some of his physical limitations. That must be difficult for you. I hope that you are able to get the swing for J1.

    1. I will make sure of it. Got my kick ass attitude out this week lol.


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