Look, I DO fit in :)

A few days ago, myself and the tutor lauged so much as Munchkin squeezed herself into a canvas shopping bag.  It never ceases to amaze me where she'll manage to make herself fit.  From a very early age, she would climb into strange places.  You would find her sitting in a toybox or drawer looking at her toys rather than take them out to play.

When we visited a friends house, she would open the dresser and pull out all the contents from the bottom shelf and then slide into the press and happily lie there for a while while I had a coffee.  My friend kindly removed all breakables from this dresser as it became a weekly event!  In my mothers house, there is a press in the kitchen which she likes to sit in with the doors closed over at times.

I never paid much heed to this little quirk of hers until talking to the Occupational Therapist.  It seems that she gets some needs met on a sensory level by doing this.  A lot of children on the autism spectrum have proprioceptive difficulties.  Hammie described this in a post on the IAA blog here as "The sense of knowing where you are in relation to the Earth" and gives a very simple example of if we close our eyes, we can still touch our nose with our finger.  I still remember seeing Munchkin tryin to eat chips with her eyes shut one day and more that a few nearly went up a nostril!

As part of her OT program, I do deep pressure and massage with her.  One of her favourite things is to be rolled up in the duvet and squashed.  She loves lying on a beanbag and being squashed with the other beanbag.  She loves the pressure that is exerted on her little body and recently squeezed herself into a pillowcase so that her big sister could swing her gently while in her "cocoon".  As she gets bigger we'll have to either get a body sock or a single duvet cover at the very least!

I find that she has difficulty realising what size she is in relation to items also and will get quite frustrated at times that she can't fit into the toy car/bed/box she's playing with.  As small as she is, there are certain limitations as to what she can actually fit into!  It doesn't stop her trying however hehe...

I'll leave you with one of my favoure photos I took when I found that she had emptied the toys out of her shelving unit to use as a ladder to climb into and have some chill out time....

*edited to add video under strict instructions of the Queen of  Blog, Hammie!

What's Sleep Got To Do With It??

"When I was a child I used to hate going to bed... Now I cherish every hour of sleep!"

I saw this posted up on Facebook earlier and I couldn't help but physically nod in agreement as I read it.  Sleep... its something we all need in order to survive and keep our mental faculties intact.  Unfortunately Munchkin doesn't realise that!  She's never been a great sleeper from the start, often waking three or four times a night and ending up in bed beside me, as it would be the only way I could get one eye shut if not two.  In the early days, while she was still a baby, I accepted that there would be some degree of sleep deprivation involved as with all babies... (you can spot a sleep deprived mother a mile off, with the telltale black bags, and I'm not talking Prada dahling!) Thats what babies do... they eat, poop, sleep and cry and repeat this cycle over and over.  Usually though, sometime midway throughout their first year of life, they will eventually settle into a sleep pattern, waking less and ending up sleeping their 12-13 hours straight through to morning by about a year...

Unfortunately, with Munchkin, and with many other children I know on the spectrum, sleep deprivation is more common than sleep.  For some reason, our kiddies need so much less sleep than other kids their age.  I occasionally get lulled into a false sense of security when my pixie decides to toe the line and give me a night or two in a row, making me believe that perhaps the torture of the night time waking is actually ending.... But no!  Bam, we're back at square one :(  I do hold onto some hope though... Her older sister woke every night until she was over 4 so maybe, just maybe....

The effects of this broken sleep don't appear evident in Munchkin, who can happily run around, and laugh and smile etc as if she's had a 12 hour marathon kip.  Nothing seems to knock her off kilter.  She does her puzzles, plays with the toys, does her tablework without fuss and stays in relatively good form during her sessions in school and with tutors.  So why is there a problem I hear you ask....

I guess the problem lies with me...  I struggle to function to the best of my abilities when I'm tired.  Standards slip when it comes to everything as I wouldn't necessarily have the energy to give things my best focus.  Just the other day, after a 5am rising with madam, I had to go to work which I found very stressful as the child I work with was extremely frustrated with not being mobile, so took it out on my hands using her nails.  I then had to go collect Munchkin from school and go to the local book shop to get some stationary and books that Yani needed for school.  We went up to the top floor to buy the books and then came downstairs to look at the puzzles for madam.  Being tired, I looked at a box and when I looked down... she was gone!  Oh no, where is she... theres a door that opens out onto the street... panic.... I start shouting her name over and over hoping she's going to answer me.  Next thing, a counter staff girl shouted over "I think she just went up in the lift"!  Great!!  I run up the stairs and find her on the upper level.  I got angry, really angry...  Not with her, but with myself for letting my guard down and letting her give me the slip!  Even if I'm exhausted, I cannot let the guard down!

Time for action... I can no longer function as a law abiding, kind, happy, intellegent, useful member of society without my 8 hours a night. I have discovered the frightening "Sleep Deprived Driving" which means I can be often seen having a catnap at the side of the road when can drive no further... When I was younger, they used to joke that if sleeping was an Olympic Event, I'd bring the gold home for Ireland every time.  I LOVED my sleep.I had it down to a fine art, and could sleep standing upright on the 75 bus to work every morning.  Gawd, I miss those days!  So whats my plan of action....

I have in my possession now, the holy scroll (well GMS prescription for Melatonin liquid)  I have previously bought Melatonin over the internet and given it in small doses but that obviously didn't have the desired effect.  The paediatrician gave me clear instructions and the dose she recommended is far greater that the amount I had been giving her.  So fingers crossed everyone... If it does the job you will probably hear the squeals of delight coming from me in the morning :)

Watch this space.... but if you hear snoring, wake me at your own peril hehe...

7 things about me...

Everyone has done their list of seven things that you may not know about them and I have really enjoyed reading all the facts. To be honest, I was very surprised by some of the things I read and completely bowled over by the situations some of the girls had to endure over the years. Some of the stories made me laugh out loud and my nasal passages had tea spurt out on occasion... I do feel though, that reading the girls blog posts has made me think about my own life and how little I have done in comparison. I had my children quite young so never travelled, I certainly never carved out a career for myself, however, I have three very big achievements that call me Mam/Mum/Mummy/Mom/Hey you..... I will endeavour to follow suit and tell you 7 things about myself though as the others have all done so.

1. I have been married twice. My first marriage was when I was 23 years old and to a Londoner. We had two children and our marriage only lasted 16 months, however we had been together for a few years before we wed. My second husband I met on the Internet and we had a whirlwind relationship and married 21 months after we met. This union only lasted 18 months. Today would have been our 4th wedding anniversary but as I never get to the second, I have no idea what it should be.. paper/rock.... scissors?? Contrary to popular opinion, I do NOT have a patio, even if I joke about it regularly ;)

2. I am originally from Dublin, lived in Dundrum for the first 32 years of my life before moving to the country. I was asked recently by Hammie, how come I have a strong Wexford accent.... I still haven't managed to find an audio clip of what a Wexford accent is to play to her, but no.. I don't have the accent! When I lived in Dublin, I had a wall at the front of my house where the local teenagers congregated all day and for much of the night. They drove me insane as used to play football using the trees in front of my living room window as goalposts. After a few years of asking them not to play there, and begging them to stop walking on my wall as it was getting loose and the brickwork was wobbly, I snapped. I took a sledgehammer to the wall in front of them earning the nickname "Psycho Bitch from Nr. 1"....

3. I worked in administration for a chemical engineering company for the best part of twelve years while living in Dublin. I hated my job but every time I quit, they offered it back to me with higher wages, more holidays and flexible hours! I kept going back but eventually went part time for them to work around the children's needs. I also did painting and decorating at weekends when The Gruesome Twosome were at their fathers house. I used to take in foreign students all summer to compensate for working less in the office, along with childminding and would do data input at night to make ends meet. During school term, I would work in the office in the mornings and do afterschool care. I loved being there to collect the kids from school, but it was hard.

4. I was relentlessly bullied for the first three years of secondary school. I hated going and became withdrawn. My mother used to have to chase me down the road in the mornings to beg me to brush my hair and make an effort with my appearance. I had buck teeth and braces. To this day, I still have a massive inferiority complex and struggle with my demons. Even when meeting up with people I consider friends, I get very nervous, although on the outside I try hard to appear confident and intelligent. I always feel as if I'm playing at life, that it's not real, and some day my "fraud" will be found out. Silly I know, and a demon I'm trying hard to slay...

5. I only started driving when I was 25. My father and mother bought me my first little car, a Ford Fiesta and I loved it. Overconfidence led me to attempt to drive to Arklow four weeks after I got it and I crashed, totalling the car with Yani in the back seat. No one was badly hurt but my bonnet ended up where my windscreen should have been and I was badly shaken. I still get nervous now when driving a route that's not familiar to me and I won't drive in the City. I do however, suffer road rage and after someone tailgated me for a few miles once, got out of the car at the traffic lights, opened the boot and roared at him "would you like to get IN"...



6. I have been a "Gold Member" in WeightWatchers three times. In total, I have lost 10 stone over the years (not all in one go!) and put it all back on each time. I swing from a size 8-18 like a yoyo. I developed an eating disorder in my late twenties and used to eat laxatives as if they were sweets. I went to the doctor for help after a particularly embarrassing event which I won't go into detail about here...

7. Last but not least, I am terrified of wasps and bees. When I was younger, I got stung and had a bad allergic reaction to it. I have been known to get out of a car because of a wasp flying in... This also extends to a fear of all flying insects, including mosquitoes. I tortured my partner and the older two on holidays in Turkey once as wouldn't let them open the windows in the apartment and we had no aircon... I didn't trust the plug in devices, the sprays, or the electronic mosquito repellent I had brought... so we sweltered for two weeks!

The end of a chapter...

I'm quite sad tonight... Today, Munchkins tutor broke the news to me that she was leaving in a few weeks time as has been offered a teaching job in her home county and would be starting after the half term. I know how much she is going to be missed, not only by Munchkin, but by our entire family.

When you take on a home tutor, you are not just employing someone to work some hours with your child. They have to be someone you are comfortable sharing your home with as they become an integral part of your extended family. Ursula quickly put all of us at our ease and there were never moments of awkwardness or feeling as if we had to get out of the way while she worked. I think if I was to describe her with two words, it would be "human dynamo!"

Having a tutor that you trust and know cares about your child and not just the paycheck is something more valuable than gold dust. Watching the two of them work together has been amazing and I'm grateful for the months of work she has done with Munchkin. The transformation in that time has been incredible. I know that a huge amount of work and teaching was done before Ursula joined us, but I had burnt out to a degree, and it was lovely to let someone else "take over" and push the program forward. She has a fantastic manner when it comes to teaching and Munchkin responds brilliantly with her and has blossomed and thrived. The children she will be teaching when she goes to her new position will love her as much as my little madam does. I know that I will smile and remember her when my minx comes out with a little Tipperary accent at times, as she has picked up the accent when it comes to a few of the words she says...

I'm happy that Ursula has found a great job and can move back close to her family, and even though I'm sad she's leaving, I know that the foundations she set while she was here are going to stand to good stead and has given Munchkin a great boost, so I'm not worried for the future.

There's no metaphor like a snow metaphor....

I'm snowed in again and starting to feel the frustration at not being able to do everyday tasks like shopping... I know if I could just get to the main road, that there is a remote chance the council have it gritted and I could get into town to restock the cupboards!

As I was lying awake in the small hours, it occurred to me how the situation could be applied to the communication difficulties our children have. We are happy and comfortable in our warm house on the top of the hill. Everything we need is to hand, there is food in the fridge, and some oil in the tank so we are pretty self sufficient. The views are spectacular and apart from a little cabin fever, we are ticking along nicely. However, when the food runs out and the heating isn't working, we are going to find we need to reconnect with the outside world... Herein lies the problem. We know what we need but there is a huge obstacle in the way. Knowing where you need to go, or what you want is one thing, but getting it is another.

Whereas some people are equipped with a 4x4 jeep or snow chains, our children have the equivalent of a Mini with slightly balding tyres so the trip down the snow covered ice impacted hill is a more daunting prospect. Not impossible, but is going to take a lot more planning and a generous dollop of caution. With love and intervention, we throw a bit of sand down so the tyres can take hold and get them moving. A bit more sand, help with the steering and the occasional push and the main road is in sight...

At times we question whether its fair or not to force our kids out of the house and into the snow to get them where they need to go. Jeanie from PlanetOutreach-ASD wrote a thought provoking post on this recently and combined with the comments on the blog, it made for great reading. The general consensus is that while it seems a little unfair at the time, as our kids get older, we want them to reach the gritted road and what lies beyond. Whether they need us to steer the Mini and throw sand under the wheel for as long as it takes, or they manage to get their own 4x4 is fine by us.

Poetry amongst the dust bunnies....

I've been confined to the house since New Year due to lack of gritting on the roads here around me so cabin fever set in and I did what I haven't done in over a year... I had a good clear out of the bits of paper, junk and clutter that seems to magically accumulate over time. I am fascinated how much we hold onto in the chance that someday, we might just use it. Today I was ruthless and decided that the binmen will earn their wages well when they can get the lorry back up the ice impacted hill I live on.

For hours, I sorted and created piles of stuff for binning or recycling (or just putting back where it belonged!) I'm ashamed to say that my inner sloth must have been residing in the utility as there was paperwork dated 07 and clothes that Munchkin couldn't possibly squeeze into pushed into bags which I had intended "putting away later"... Its cathartic when you finish and see the results of your efforts. Where others had to entertain bored children, I found a little silver lining to our ASD cloud... I was free to attack the clutter and Munchkin played happily by herself in her playroom (I now have to do a clear up job in there, but hey, the kitchen and utility look GREAT!)

While clearing a shelf in the kitchen, I came across a poem that had been copied and given to me just after Munchkin was diagnosed, and I smiled as I read the words printed in front of me. It was written by R.S. Thomas and would like to share it with you here.

Children's Song

We live in our own world,
A world that is too small
For you to stoop and enter
Even on hands and knees,
The adult subterfuge.
And though you probe and pry
With analytic eye,
And eavesdrop all our talk
With an amused look,
You cannot find the centre
Where we dance, where we play,
Where life is still asleep
Under the closed flower,
Under the smooth shell
Of eggs in the cupped nest
That mock the faded blue
Of your remoter heaven.

I just love the way he portrays the innocence of children, untarnished by the world. I like to believe that its not a world children are trapped in, rather a pure beautiful place that they can seek sanctuary in, as all children do before the harsh realities of growing up change that world to an adult world, with cynicism, responsibilities and stress.

A Rose by Any Other Name...

I'm struggling a lot lately, having to keep explaining the need for labels for my children. Its got to the point where I'm almost starting to believe the people who think I'm looking for things to be wrong, almost "wanting" there to be something there so I can slap a label on my child... It couldn't be further from the truth though. Of course I don't want there to be any reason for my child to be diagnosed with anything else, but in my heart I know that we haven't got to the bottom of my middle child's issues. Therefore, I will don my elephant hide and get her the private help she needs and if that gets her an additional label to wear, so be it.



Trying to explain the need for a label is exhausting. A simple analogy I use is that you have a cupboard full of cans, all with the labels missing. You try to figure out whats in there perhaps by seeing how heavy it is, does it slosh when its shaken, or is it solid. You can really only find out a tiny bit about the contents of that aluminium can without its label... Now stick a label on the can. Whats changed? The can is the same, the contents haven't changed one iota. All that has changed is now we can easily identify what is inside that can without the need to guess or shake it.

So that is the purpose of the label. To identify what is there. Its not a name, or a tattoo that has to be worn on the forehead of your child, but it is essential to get services and the help your child needs and deserves. Don't forget also that labels peel off and can be changed as appropriate if things change.

So where is the real issue that some have with the label? I feel its the stigma of old. Sure don't people label themselves all the time if its something they are proud of? MD, BA, Mrs, Sir, Lord.... So why not come out and say the real reason they don't like certain labels. Yeah, its the stigma, I don't want people knowing there is any mental illness/neurological disorders/disability (delete as appropriate) in our family... Ignoring and shunning the label however, won't change that or make the child neurotypical. It will just deny them services and help.

Munchkin got her label nearly a year and a half ago and in that time has obtained intensive intervention, home tuition and a place in a special needs preschool. Add that to the help she gets from us at home too and you see a totally different child to the one who presented a year ago. As my mum said to me over Christmas, whatever you're doing, keep doing it! She is doing fantastically and I know in my heart, that without the label we wouldn't be doing as well as we are. I just need to sort out my cans in my cupboard and get my middle can relabelled properly so that she too, can move forward....