The crapness of being always ( mostly) right

If you know me ( as in have physically met me) you will know that I am down right stubborn, think I'm always ( mostly) right, and don't EVER like to admit that I'm wrong. Even if I am ( which of course I wouldn't be).

I can visualise Michael nodding and sighing at this statement

When it comes to Nate I try to remain cautiously optimistic BUT I like to have a back up plan. I like to be prepared. Just in case, you know? A clear course of action makes me giddy with glee, a slight exaggeration I suppose, but it allows me to function in society. Kind of. 

Sometimes pressurising professionals to join me on my wavelength and help formulate a simple plan can be like banging your head against the proverbial brick wall.

 " oh we don't need to plan for that" 

" oh that's not going to happen anymore" " why would he need nursing at school? " etc 

It must be quite easy for them to pass off " a good spell" as "the new Nate". And while I remain optimistic about these things I have to be realistic as the back of my mind retains images of a purpley Nate being ressusitated by my husband, ambulance rides, Nate with wires in and out of his little body, Nate intubated and on a ventilator, and professionals bagging him. So when I'm told he's made good progress health wise I nod, smile and then plan for when he does these things again anyway... ( all the time secretly hoping I'm proven wrong) . 

The advantage of being a pain in the backside who always thinks they are right is having the balls "cough" confidence to disagree with pretty much everyone about your children and what's best for them. 

I've learned to say "no".

 I was late to this party though as Michael has been disagreeing with everyone about everything from the start ( no surprises there, it's nothing new for him..) and we would sometimes fall into an odd "good cop bad cop" routine without even thinking about it. Clearly now I've picked up a useful disagreeable habit. 

Note this is only a problem if you are wrong which obviously I never am... 

Things I have been stubborn about ( so far) : 

-Insisting he went to a school with a nurse and bags of experience with children being, quite frankly, a bit dodgy. 

- I wouldn't have our oxygen removed from the house. It remains for use in an emergency. Likewise school needed oxygen and guidance ( the same plan as ours) on when to use it - sats in the 80s give oxygen and get to hospital. Not as our paed worried- " well people would be putting him on oxygen for just anything". err no I think you've missed the point there.

- unusual episodes of laughing and staring are not just "part of Nate" and after much pushing we have a focal seizure diagnosis and start treatment next week. 

So yesterday after school when Nate did something he hasn't done for a year and a half we were prepared for it.  He hasn't " grown out of it" at all. He spiked a temp of almost 40 dropped his sats to low 80s and HR was 170- I gave emergency oxygen and waited for an ambulance as the next stage in this not so merry dance is typically an increase in oxygen requirements and eventually a need for extreme measures ( bagging/ ventilation/or less scarey humicare ) and  it became clear I couldn't get him to hospital safely.  I realised too that if he had done this an hour earlier, school would also have known how to act. 

This is one time I wish I had been proven wrong, but guess what? I wasn't. 

I'm a bit cross Katie Price

http://m.bbc.co.uk/news/blogs-ouch-24763564

In this article Katie suggests parents of disabled children are "ignorant" " don't want to look for help" and are "lazy" for not looking for and accessing the support that is apparantly out there. Oh and that we expect the help to come to us.

 Now I have no interest in Katie, Katie books, Katie shows, Katie's boobs etc. I know she can't understand what it's like to live with a SN child WITHOUT money. She won't have to wait months for OTs and physios and equipment reps to decide on equipment, then wait for the paperwork to go through and eventually get it at which point it's almost too small and the process starts again. I'm sure she didn't have a battle for housing adaptations as many people do. I'm sure she has teams of people to decipher and fill out her forms. All of which is money related, and we know vast amounts of money can make things easier, and I'm not wanting to sound bitter here. 

My issues with her comments are related to the fact that she is liked and loved by many people. People who will listen and believe her thinking she knows what she's talking about. So not only are her comments insulting and not based on fact, they are actually potentially damaging to how we parents are viewed.

Here are my thoughts. 

• when you've had no sleep ( no nanny to see to your child during those pesky awake times during the night), endless appointments at hospitals, those phonecalls you have to do yourself because you don't have a PA, and then doing the day to day household stuff it's hard to "go look for the support"

• accessing advice and support for you and your child regarding new symptoms, behaviours, things like OT, Physio and SALT can be difficult. Generally it involves getting someone to make a referral, waiting lists, and then being put on the caseload of a (usually) competant person who is too busy to give you what you need so you spend half your time leaving messages and waiting for them to ring back. 

• it's not lazy to think it might be nice for help and support to come to you, particularly when things are difficult. 

• help and support come in many forms- things like respite, help in the home and direct payments require assessments ( plural) from social services. That's if you can get them to speak to you, if you can get them pinned down to do the assessment, and if you meet the criteria for accessing help. These criteria aren't normally shared and you will get fobbed off and dismissed a lot. You then need to muster the energy to keep at them until they cave or you break down and then, maybe, you might get something. 

•Once you access a service chances are your situation will be reassessed frequently to try to take it back off you. 

• any support services, whether via charities or social services are dependant on their budgets. Those budget cuts you may have heard about Katie? Yes those. It means we get screwed. 

• help and support aren't freely offered or easy to find out about. Unless a professional involved with you is in the know, or you have been pointed in the direction of a carer forum or support group ( again IF you've found the time to find these- more of this being "too lazy" to find help) you will be clueless about the types of support potentially available.

•oh and I almost forgot- everything is a postcode lottery! 

Add to this normal family life, other kids, jobs, tiredness, stress and then a sick child...

DO WE STILL SOUND LAZY?