Friday, March 23, 2018

Respite and thank god for it

We are forever greatful for our respite and we know how lucky we are to have it

We got respite as a result of a crisis
I was pregnant and my son was aggressive towards me which put me in hospital as I was solo parenting 2 days a week as hubby was away working those two days every week
We started off with 2 days weekly than this progressed to an added weekend a Month  a few years later when twins came along

Unfortunately we are now needing more and are in crisis yet again with horrendous and dangerous sleep deprivation.  We are still in receipt of sons respite but we have none for the twins, we are eagerly awaiting it to start for them in July as they will be 6 years old then

While we get respite we don't at same time,  while one is away the other two are here

We still don't get to switch off, sleep or do anything with our non autie children
They suffer so much as does my teenage daughter as she  can't sleep either because of them, they keep her up all night too, she is exhausted and this also affects school and consentration

When we get the opportunity to be autism free and the money is saved up enough we go mad, we go to two cinema movies instead of just 1
We go for a Chinese meal and go all out
We try go to really cool places with really cool activities like tayto park, bundoran, fota wild life on the weekend.etc
We try make it count as it's so rare we get out like that, we live for every second we have, we do be exhausted but it's worth it

If we go away for a weekend we need my supermum to move in which means her poor dog boards in kennels
We need in home workers to take kids off for few hours each day to let my mum recover as those twins  are seriously hard work and she won't get sleep, my mum is in her 70s

We need to plan the trip like a military operation, serious strategic planning
And there must always be a plan B and a plan C never just a plan A
There is no room for error or sickness
Ie preteen too sick for respite or my little boy taking a hypoglycemc dip.and needing hospital

we need to swap save and change respite also to accommodate for school holidays like midterms, Christmas, Easter, Halloween and summer, we gotta forfeit to store for them and swap and change to suit them, its a nightmare, I have to be so on top of our shit on 0 sleep , lack of forward planning and organization will wipe the floor with a special needs parent

Then we have the solo respite holidays, this breaks my heart and upsets my kids
My kids are half German half Irish
Their dad flies home once a year on his own to get some quality respite and see his family, this is so important for him as he is a full on hands on night shift dad
He changes nappies, showers kids, makes the lunches, does the laundry, washes the dishes, empties and fills the dishwasher and does the night shifts
This guy is my carbon copy but male
He is superdad , and he needs a break
PS we don't do man flu, that man would be on his hands and knees still getting the shit done. And yes literally once he was on hands and knees sick with a vomiting bug doing what needed doing

I then go away with my mum and my two non autie kids, we go away for a good 10 days or so and we make every minute count, we do sun and pool and every activity the country has on offer
We don't get to do this every year but we do it as much as possible and when we don't go abroad we travel the west or Dublin doing as much as we can
The aim of the game is fun and making every second count, again this takes strategic planning and respite and in home

Respite is like a lotto win
You just go mad and enjoy every minute
You'd be crazy not to

No comments:

Post a Comment