Baby B

It’s been a crazy couple of weeks in my world. Changes.
It is impossible to even know where to start on exactly what has been happening. There is so much I simply cannot write about and that has been a stumbling block. That and being a wee bit tired.
So…what can I say?
I am no longer just a foster carer. I am also a kinship carer. For those who aren’t familiar with the terminology, this means I am now caring for a member of my family. The very newest member.
Baby B has come to stay for a bit. Not sure how long.
So I’m back on the 3 hourly bottle feeds, the pre-dawn tete a tete’s with this beautiful little girl.
The boys have all been very interested in her. J gives her kisses at every opportunity. N (when he is here) reports on her every move, delighting in her tinyness. L has a sweet little smile for her – when she is not in his way, intruding on his space or making noise.
He, on the other hand is making SO MUCH noise!
That’s it for now.

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Holy Sleep Deprivation Batman! I Need A Bat Cave

For a year (yes…a year), I’ve had a towel over my little boys window. I’ve been trying to work out what kind of window covering would  survive him, and him it.

Autism manifests itself in many ways but my 5 year old is a sensory seeker. He craves sensation. When he gives you a hug, he can’t help but go that one extra step and dig his fingers in for a pinch or a scratch. He loves to rip paper. He loves to make noise – a lot of noise! Especially when he wakes up. He loves all things string and carries a ribbon everywhere as his stim of choice.

His bedroom is kept fairly clear. It’s only a small room, so there’s a bed, a small chest of drawers, a rug, some beautiful photographic prints of him at about 6 months taken by Uncle Al (photographer/artist Alberto Sanchez Peinador) , some gorgeous animal art originals – all placed nice and high so he can’t reach them. He also has a pinboard which deserves a post of it’s own, but let’s just say everything on there is laminated, including the recent self portrait he took at school.

It’s kept clear because he is on a constant search and destroy mission. It’s a nice room but the window coverings have held me in limbo for quite a while. Curtains? No good, he’d pull the whole thing out from the wall. Blinds? Can’t have anything with a string and he’d also probably just yank the hell out of it till it broke. He’d dearly love to take a leap towards the ceiling fan – lucky white boys can’t jump! I give him a year.

Push has now come to shove. The sun is getting up earlier & earlier here in Australia as we move through our stunning spring towards summer. We’ve gone from him waking at 6am to 5am in just a couple of weeks. And it’s only going to get worse! I need a total blackout situation if I am not going to be woken ‘in the 4’s’ for the next 4 or 5 months. I need a bat cave!

I put the question out to a group of special needs mothers – please help! Within a couple of hours I had some really great ideas. Everything from hanging old blinds on the outside of the window to attaching foil to the outside of the glass with just a spray of water. But I decided to go for the velcro solution. The worst that can happen is he rips them down and wakes up early. Here’s how it all came together.

A nightmarish trip to the shops to buy the supplies. Not fun. My boy does not like Spotlight so spent most of the time on the floor screaming. I got a big headache…and the supplies. I did not care if the fabric design was perfect for the room. Just take my money and let us get out of here!

Auntie Elaine’s beast – they don’t make ’em like this anymore!

Out comes an ancient machine (inspiring another post, yet to be written about women’s machines!). My auntie gave this beast to me a couple of months ago. Unbelievably heavy! Fully operational, worked just like a new one! I haven’t used a sewing machine for about 20 years, but it was just like riding a bike, kinda. A few additional items were required from the sewing tin and the tool box.

my sewing tin

measure twice, cut once

Measured twice, cut once, zim, zam zoom…done!

the blue window

the red window

Brilliant! I’m very pleased with myself. My little guy celebrated with a jump on the bed.

Problem solved…fingers crossed. Further reports will be forthcoming.

 

You Are Getting Veeeerrrrry Sleepy

Day 19: Autism Awareness Blogathon

A few years ago I watched a fascinating documentary all about sleep. One of the  stories it told was of a person whose brain switched off the sleep button and never turned it on again. There was nothing this guy could do to get to sleep. He went to hospital where they tired all kinds of things to help him. In the end he became psychotic, his body started shutting down and (take a breath) he died. From getting no sleep.

Many people on the spectrum have sleep issues. It’s exhausting for them and exhausting caring for them as when they are awake, you are too. Melatonin works for some people, but not for others. Massage, oils, warm baths, warm drinks, blockout curtains, regular sleep/wake patterns, white noise machines, you name it, we will try it if it means we might get some more sleep.

image credit: bepositivemom.com

Today a good friend and autism mum posted the following message on our trusty friend facebook.

Well I’ve been a mum for 5.5 yrs now. Sleep deprivation is all too common for parents that have children with disabilities. It’s not like newborn broken sleep, it’s not like teething broken sleep or bad dream waking during the night…. it’s just on a WHOLE different level. It doesn’t go away, or stop all of a sudden because your toddler has stopped teething or baby has stopped night feeds or are old enough to go out have a big day playing with friends and getting worn out. It’s the sort of thing only a parent with a child with a disability that has some sort of sleep disorder could even comprehend.

I used to tell myself when my 2 were babies ‘this waking at night.. its only a moment in time, it will pass, they will grow up and out of it’ and that mind set helped me so much. But so many parents who are in a situation similar to mine and harder, don’t know if it will ever change. Learning to ACCEPT living on little sleep is a must so you don’t kill anyone trying to find a way to ‘get sleep’.

I’m tired, god am I tired…but I can never help myself thinking about parents who have been doing this longer than 5.5yrs. What about the parents out there who have children in their 20’s+ who live with them and still need 24/7 care, and they get up every night for 20+ yrs to help their children to calm, feed, toilet, change adult nappy or fix tubing or to do what ever is needed. I have so much admiration for these parents. It’s a long, hard tiring road.

Will I be one of these parents? I don’t know but it’s the love for a child and thinking of those parents who have been doing this longer than me that helps me get my ass out of bed at night after night after night. I have a few friends that are in the same boat but it is so hard to explain to people what it’s like so I’m just going to put it out there for everyone!

I wish!

Thanks for that tiny little slice of your life Candice. I used to hate that saying ‘whatever doesn’t kill you makes you stronger’ but that was before I became an autism mum.

Now here’s an adults bedtime book read by Australian actress Noni Hazlehurst to cheer us all up (warning – language! don’t press play if swearing offends).

image credit: doubleday