Friday, 10 April 2015

Thomas Land Fun

Finally,  we all went out for a day trip.  The whole family!
That's seven kids with two adults- the amount of times I have muttered  'I must be mad'  in the run up to the actual day..... I have lost count!

When we go out on a day trip,  it is like a military expedition.  We have check lists of what to take and what NOT to forget. 

Did I mention the 24 sandwiches (three different types to keep everyone happy..), the 20 packs of crisps,  16 fruit snack bars,  24 fruit juices and 12 cans of cola?  In addition to the spare clothes for little ones because you never know,  three sick bags because you never know,  and an ample supply of nappies,  baby wipes,  kitchen towel and a few extra pairs of socks. .. because you never know!

So after getting the car packed full with that little lot,  including a pram,  a wheelchair and the nine of us,  we really need a break before we get there.

So onto Thomas land which is at Drayton Manor theme park..... 

Car parking wasn't particularly well sign posted,  especially for disabled bays.  We managed though by cutting across a few grassy patches that I don't think we were supposed to,  but we made it in the end.

And it was  busy.  Very busy.
Even so,  we weren't queuing for that long before getting through.  And the little ones loved Thomas.
There was plenty for the older kids as well with the main theme park rides. Disabled access to everything was fantastic. There was fast track access because we had the wheelchair to the Thomas and Percy train rides.  And staff helped us on the train before letting anyone else on the platform so there was no risk of crushing or pushing.... Such a relief with brittle bones. The train driver even stopped to chat with Qasim and check he was happy and everything was OK for him.
Because we had a mountain of food in the car we didn't try any of the vendors there for a big meal.  We did get two coffees and six ice creams which came to just about £18 so it wasn't too badly priced.  Obviously a bit pricey because these places always are, but not overly so.
Kids rides where short on queuing time,  but there was so many of them its not surprising.  The longest kids queue was probably the train ride which we fast tracked..so for us it was only five minutes.
The main theme park had huge queuing times which we expected.  But that's not too bad -  older kids are happy to queue for a while before being hurtled through the air.  Small kids aren't!

All in all it was a great day.
Great entertainment, great staff and easily accessible. 
Not one autistic melt down in sight which is fabulous when it comes to these places. 
We can't wait to go back again.... But we  need a break from all that sandwich making first!

Sunday, 5 April 2015

Holidays...

Easter holidays are here!
We haven't had a bad run of late.
A few niggly issues with the recurrence of scoliosis which seems to have popped up over the last 6 months and appears to have a few professionals in a flap.
A few broken fingers over the last few months  but nothing we can't handle at home.
And......
We are braving the theme park world and are soon to be visiting Thomas Land,  courtesy of the 2 yr olds love of all things Thomas  and trains.

So we are really hoping they are wheelchair/disability friendly,  and there are some good activities that everyone can get involved in. ..... Mmmmmmmm -  there maybe a Thomas Land Review coming up!

And don't forget Wishbone Day is coming up next month.  Awareness makes a huge difference  -  it's not about the money!  Xxx

Monday, 2 March 2015

Wishbone Day 2015

For those of you who don't know, wishbone day is on May 6th.  Wishbone day is a world wide awareness day of a condition called Osteogenesis Imperfecta, which my son has - also known as brittle bone disease.  The colour for Wishbone day is yellow...... So throughout March, April and May,  all yellow items will have a 15% discount  at Crochetknows.  Just mention code Wishbone15 when ordering. 
For more information on Osteogenesis Imperfecta go visit www.brittlebone.org and you can follow our story here.
Because Awareness Makes A Difference.

Just go to www.facebook.com/crochetknows to order and browse xx

Sunday, 4 May 2014

No news is good news.....

They say no news is good news.
So this should be a warning that we have news.......
It has been such a long time, but since our last foot fracture waaaay back in about 2010, we have been pretty fracture free. Not including the odd finger here and there.
So today the sun is shining, the birds are singing and we get a letter from the childrens hospital that Qasim's vitamin D levels are low. So low as to be shocking.  (20-50 is deemed normal. Qasims is just over 7).
So we have the bright idea of doing some extra playing outside in the garden - soak up some of that sun and get that vitamin d boosted as naturally as possible while we wait for the gp to prescribe the supplements we need.

And thats when our 4 yr fracture free record is broken - quite literally.

It wasn't a fall or a trip. It wasn't anything dramatic like a football or a spare tennis ball flying around. One minute Qasim was fine, the next his foot gave way. Nobody near him, no knocks or bumps.

I guess this is the part of OI that we have forgotten about.
Sometimes there is just no reason to break. There is no sinister trauma or 'accident'.

My little man broke his foot just looking at the grass, listening to the birds and enjoying the sun.
So the rest of this beautiful sunny day was spent in hospital and having x rays done.
But at the end of the day we really have had an easy time the last few years.  We have seen our friends fracture over and over. Some have had fractures that just wont heal. Some have been stuck in hospital for weeks while dr's poke and prod and play guessing games, unable to give them a diagnosis.

So I guess one fracture in four years is really bloody brilliant!

Sunday, 30 June 2013

Sickness bugs.......

I HATE BUGS.
The ones that make you sick.
Well, to be precise the ones that make Qasim sick.

Because Qasim is never a little bit ill. He is either absolutely fine, or he is really really ill.

Thankfully he isn't ill often. He is 8 yrs old and only ever had antibiotics once for a chest infection.

But sickness is his weakness.
He will be sick until there is nothing left to be sick with.
And he will be sick in his sleep but not be able to wake himself up. So at these times of stomach bugs, we have to sit up with him all night and help him if he is sick in his sleep.

So I'm really hoping that this bug is a short one and he is not ill overnight.

And if anyone knows any good remedies please please let me know!!

Tuesday, 25 June 2013

Autism - Learning to love it!

I Know a few people whose children have autism. My boy does too. Personally I would put him as mild but his diagnosis has come back as moderate.

So this may not be popular with those whose children are worse than mine because each child is different and I wouldn't last more than 5 minutes with anyone elses autistic child, but I am learning to love my sons autism.

We are having some bathroom adaptations done to make the downstairs bathroom more wheel chair friendly.
Qasim is the kind of kid who loves routines and having things done at a set time,  in a set way. As long as he is warned of any changes in advance we are all good.
And let's be honest, you can make it work to your advantage.

We are NEVER late for school. EVER!
Why?
Because we have to leave the house at 8.25 precisely.  Which means we have to get Qasims uniform on at bang on 8.00. He has to have his breakfast at 7.45 which means he has to be up at 7.30.
So when he doesn't want to get up in the morning (and who can blame him) we just whisper the magic words 'but it's 7.30.' And boom - he's wide awake. If he is really tired he may ask 'is it am or pm' in the hope I will say pm - but reassure him it is indeed am, and he will be up and awake and ready for the day.

So to the bathroom adaptation.

He has been warned what is happening, he has to change rooms for two weeks because he can't sleep near any dust.
We have a new bed time.
And it is working!

So sometimes I love Autism.
No unpredictable melt downs because we know what will trigger one off and avoid the trigger.

And Qasim is better than an alarm clock for keeping us all on track!



Sunday, 16 June 2013

Drowning in Equipment. - The hoops you have to jump through and the crap you have to keep!

Equipment - Arghhhhh.
I hate all this equipment.
And it is so hard to shift.

At the end of the day, I know it is just people doing their job, but really the system is so silly, I can't get my head around it.
For example -
Me -  We need an outdoor wheelchair. You know, the kind you can use outdoors.
The Policy Makers - Oh no, you can't have an outdoor wheelchair until you have had an indoor wheelchair for 6 months.
Me - But we don't need an indoor one, my son crawls in the house.
The Policy Makers - Then maybe you don't really need an outdoor one!
Me - Sorry? Can you see my son crawling down the street? We definitely need an outdoor one.
The Policy Makers - Well then, you have to have an indoor one for 6 months first.
Me - OK. Erm ,  can we use the indoor chair in hospital then?
The Policy Makers -  Well, I guess, but can you get it into the building without it going 'outside'?
Me - Well, it would have to go across the car park and in through the main door.
The Policy Makers - Ohhhh No! Sorry, can't take it across a car park.

Ok - so the indoor only chair sits at the bottom of my stairs for 6 months, never used, charged up once a week so the battery doesn't die.

6 Months Later.....

Me - Are we ready for that outdoor chair yet - so my son can go to school??
The Policy Makers - You had your indoor chair for 6 months then?
Me - Yes.
The Policy Makers - OK - it's  a two year waiting list for an outdoor chair. If I was you, I would just go get a private chair from somewhere else.
Me - @#*$@~

And then we have the equipment we have got, and this stuff isn't cheap. it costs thousands. I never thought a specialist car seat could cost over £1,600, but put the word specialist in front of it and the price triples.

So we have some chairs - very expensive chairs. Bought by the NHS. For thousands.
We don't really use them - we have found excellent alternatives that suit us much better and cost next to nothing in comparison.
Can I get rid of these chairs?- Can I boot.

Me -We have a couple of chairs we don't need. Do you want them back to pass onto another child who needs them?
The Policy Makers - Are you sure you don't need them?
Me - Yes.
The Policy Makers - Well, why don't you hang onto them in case you do decide to need them.
Me - No really, we don't want them. We don't need them. We don't use them.
The Policy Makers - Hold onto them anyway because you never know!
Me - But they are just sitting in my shed doing nothing.
The Policy Makers - Are you sure you don't need them?
Me - @#*$@~

So I have a shed full, and I mean full of chairs and equipment we don't need. Or want - did I say THOUSANDS of pounds worth?

So yes, it really is the hoops you have to jump through and the crap you have to keep.