Wednesday, 22 June 2011

Calmer Waters

It's around 4am when I roll out of bed and throw on yesterday's clothes.  The baby has had me awake since 2am and there are chia seed crackers and walnut/macadamia cookies that need turning in the dehydrator.
It seems funny to be doing sun salutations when the moon is still in the sky.......
My body aches too much to persist with yoga so I sit in the stillness of the morning and sip water. I can hear the Paddy walking around upstairs  so I steal some time to myself back under the covers before  'showtime'.

I find myself wondering how many other Mothers lie in bed waiting to hear how loudly her child's feet hit the floor in order to gauge the tone of the morning?  Probably more than I imagine.  Dillon crawls under the covers with me and snuggles.  He is happy and well rested.  I exhale.

I serve scrambled eggs and vegetable soup for breakfast.  I really appreciate the fact that Finn is willing to have this with Dillon.  I can't imagine too many kids his age happily eating vegetable soup in the morning.   Pretty soon Spectacular Spiderman will be down with a different order and the baby will up for his usual. When  did my house become cafe?  Breathe........

The scene here is in sharp contrast to other  mornings over the past month and I am reminded of how much food matters. No fights, no yelling and most of all no tears.   Dillon is calm, I am calm and his brothers are calm.  It's a good morning.  I exhale.

Wednesday, 1 June 2011

Bittersweet

the bitter result of a meltdown

Sweet


Life for us has been playing out like a bittersweet symphony, where the drugs don't work (thanks The Verve).  Events like this morning make me question my decision to have more children.  Feeding a baby and protecting a toddler while your 8 year old destroys your house. smashes his head against various hard surfaces in between throwing objects at you, will do that.

I can't help but wonder what kind of impact living in this situation will have on their lives....
I can already see how it is affecting our eldest child as he was fighting  back tears this morning as all hell broke lose.  There's no doubting the level of stress that my other children will carry, which is no less compounded by parents who can't seem to agree on the correct way to deal with it  (is there really a correct way to 'deal' with this?)

A few days ago, I finally swallowed my pride and admitted that I am out of my depth and needed help,  only to be told that funding for this kind of thing doesn't extend to the area we live in.  Let it be said that 'my area' would hardly be considered unworthy of funding.  Lack of funding for a crisis situation?  The media has been very vocal lately regarding Autism funding, some going as far as to say that medical professionals are falsely diagnosing borderline kids in order to get funding.  Apparently the government is pouring money into Autism.
As bad as things are here, they are exhausting but do-able,.....  for  now.   Fast forward 4 or 5 years though and try to picture how  we will be travelling as a family unit then?  Not so good if things don't start to turn around.  Yesterday I was reminded of the lad who pulled a knife on his mother because he didn't want to take his meds and was subsequently shot dead by an inexperienced police officer.   A couple of years ago I could never of related to that story but now I'm not so sure.

Tuesday, 31 May 2011

Chasing Rainbows

I stand at the base of the biomedical mountain, clutching your rapidly growing hand.  We've stood here many times only making tiny steps upwards, often landing on our arses. But alas we start again, still searching for your pot of gold.

Monday, 2 May 2011

A Wee Convo-The Wii Connection

Today Finn (my eldest) and I had to go 'see a man about a dog'.  With Autism having such a huge impact on our day to day lives it was a rare moment for us to have time to connect and chat.  Oddly enough (or not) the subject soon turned to what it means to have Autism.

Me: "You know how with the Wii there  is the red, white and yellow cords?"
Finn: "Yeah"
Me :"Well you know how when you plug the wrong connections in, how the Wii doesn't work properly. Like you get the picture but no sound?"
Finn: "yeah?"
Me: "Thats kind of like Autism.  Some people have a lot of Autism because more of their connections are in the wrong holes.  They have to try really hard at focussing on the things that work for them that they can't work on the things that have the wrong connections"
Finn: "So Dillon and Carly from YouTube have a lot of the cords in the wrong connections?
Me: "Yeah that's right"
Finn: " That's why  they yell and hurt themselves, because it feels like their heads are going to explode with all the wrong connections?"
Me: "Yes Finn.  There are other people though that only have a couple of cords in the wrong connections."
Finn: "Like Billy?"
Me: "Yeah like Billy"
Finn: "Poor Dillon.  So Mum?"
Me: "Yes Finn?"
Finn: "If this is what has happened to Dillon why do you get so angry and yell a lot?"
Me: " It can be difficult to see your child in so much anguish and pain.  It causes a lot of stress for me and  I don't always choose the best way to deal with it.  But I am working on that Finn."
Finn: "That's good Mum".

Finn really likes Wii.

Monday, 25 April 2011

Stim City and the Internal Trampoline



Stimming as described in the book the Autism experience by Valerie Foley is "the repetition of physical movement or sounds in order to stimulate or calm oneself".   
There was a time when I didn't think that Dillon had any stims (I also thought Autistic= Rainman so.....) because in the beginning, he didn't do the usual things like spinning, flapping or rocking.  There was this thing he would do with his fingers in front of his eyes and so for a long time I thought (or maybe hoped) he had a problem with his vision.
However, once we received his official diagnosis it was as if the sky opened up and all the stims rained down on top of us.  First we had the spinning, boy did we have spinning.  There wasn't a thing safe in the house.  Cups, glasses, plates, toys, toast (yes toast) you name it, he could/would spin it.  Even if there was nothing to spin I would often see his hand making the motions.  With the spinning becoming out of control (not to mention dangerous),  I decided to try and direct him to other things and eventually it stopped.  You know what they say though 'a rolling stone gathers no moss'.  Just when I would be feeling all pleased with myself a new stim would emerge.  We've had them all : teeth grinding, throat clearing (or hocking if you prefer), constantly pacing the house, flapping, playing with cords, walking the perimeter, licking walls (that threw me especially as he only ever did it out of the house), loud vocalisations, running the taps, flushing the toilet, going back and forth to touch me several times a day, finger flicking, repetitive use of talking toys, music and so on.  Most of these things take turns and some of them keep company.
We've had a fairly busy start to the year.  First up there was the birth of our 4th boy, Oisin (pronounced Osh-een for all the non Irish) Next the Paddy had a nasty accident at work where he received steam burns to his chest, neck and arms, requiring 2 weeks in hospital and skin grafting. A major upheaval but enough said about that for now.  These events plus the school holidays no doubt  resulted in this happening!  Which leads me to the latest new stims.  Ever since the 'great escape', Dillon has developed this little internal bounce which occurs numerous times a day and then there is this........





video






 Hmmm, I wonder what he is trying to tell us?
I'm pretty moderate when it comes to stimming,  ya know, we all have our ways of unwinding and coping with stress.  I have to admit though, I'm pretty anxious for the school term to begin.

Thursday, 21 April 2011

A Little Piece of the Pie

I thought it only fitting to mark my first blog entry by celebrating the launch of the Autism Experience book by Valerie Foley.  Valerie is one of those rare people who stand out in cyber world as a kindred spirit.  You know, the type that you actually want  to meet in person.  Her passion for her child (your child/children) and the autism community in general is inspiring and infectious.  She is the driving force and author of the Autism Experience, an honest, informative, raw account of parenting a child with Autism Spectrum Disorder, told by Mothers from all over the globe. Some of those Mums can be found here.  I was both honoured and humbled to be a co-contributor and  share in a little piece of the pie with such beautiful and inspiring women.