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!!

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!

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.

Ch-ch-ch-ch-changes!

Qasim hates changes - and so do I! But he has autism, so you can kind of understand. I don't, I'm just happy when things are working fine and don't see a need to change them.
But we have had a bit of a major change in the last week.
Now changes are do-able and easy when we have lots of time to get ready. These are ones that are coming up and you know they will definitely happen on a certain day. For example - Qasim will be changing class in September. From September his teacher will  be Mr T. His classroom will be different - we can go visit his new class, his new teacher.

What is a problem is when one of his aides is leaving and we have only a few days notice. I understand she has a new job to go to, and wish her all the best. She has been brill with Qasim for the last two years. And people can't stay around forever - I just wish they could!

All of which has made us talk about changes - and what may change in the future.
The future is another concept Qasim has difficulty with - but we have to try anyway.

So all in all it has probably been a good experience for him. We have had to tackle something we both don't like - and we have come out the other side with no major melt downs. And we have talked about what may change in the future, so he will have some kind of foundation when things do change again.

Just so long as they don't change too often!

Charites and Gripes!

Well it's nearly May 6th. And that is Wishbone day. Which is the worldwide awareness day of Osteogenesis Imperfecta.
The motto for wishbone day is "awareness makes a difference".

Lots of people wear yellow on this day, and they do raise money for charity. Now this year, there seems to be a bit of trouble in the charity department!
Some people with kids who have the same condition as my son are feeling a bit short changed by charities at the moment.

People have had requests for helped ignored, support lacking, emails never returned. Questions over how money raised is spent.
So this year, I'm making a bit of a stand on this.
Wish bone day is not a money raising event - look at the wishbone day promo videos on you tube. They themselves state it's not about the money.
It is an AWARENESS day. Not a money day.

So I will be raising awareness of OI - which I do at every possible chance I get anyway.
And I'm not raising any money!

Quiet Days

It looks like we are having quiet days. No new things are really happening. Life has been wonderfully normal. Just the usual childhood bugs and not much else.
No fractures. No surgeries. No drama - yay!!
So if I have jinxed it all and we have a nightmare ahead, just slap me now.
Quiet is great in the real world, but not so great in the blogging world.
So is there anything any one wants me to address?? Any topics other OI mums or people in general would like to see?? If so, message me to let me know - otherwise no news is good news!