Monday, October 26, 2009

Acknowledging your Inner Aspie

Today I once again pondered then genetic links with ASD. Every once in a while, I peruse the genetic links and question where Munchkins particular brand of autism reared its head from. It would be very easy to lay the blame squarely on the shoulders of her blatantly aspie father, but I have to acknowledge my inner aspie too...

I have had numerous conversations with other parents of children on the spectrum and have come to the conclusion that we are all on the spectrum somewhere, with varying degrees of quirks and symptoms. Our children just have more quirks and difficulties that perhaps we as parents have.

As I sat driving up to see a friend this afternoon, I reached back several times with my hand to scratch the back of my neck and it was only when I went to rip the label off my new top, that I realised I have several tops at home with the signature two holes at the neck where I have yanked the label from the top when the sensation became intolerable and couldn't wait til I could delicately remove the offending fabric by unpicking the stitching... Ummm... interesting... I started to think deeper about what other quirks I might have.

One common trait that keeps emerging when talking to other parents is a resistance to change. We like to think that we are fine with it, but only over the weekend, Facebook changed its format once again and there was uproar about it! We don't like when we have to find our way again, we like consistency. Many of us found school years uncomfortable, felt out of place. We seem to have a routine of certain rituals we perform, from activities we do to the predictability of perhaps a Chinese on a Friday night. I personally cannot sit in the sitting room with the curtains all crooked or caught up behind the chair that sits at the window (my teenagers seem incapable of pulling them straight, preferring the yank and leave as it falls option), pictures not straight or a lack of symmetry can ruin my concentration until I am compelled to straighten the offending article... All of this though can been seen as typical behaviour. The one thing that makes me question my own aspieness though is my love of technology...

Is it normal for your pulse to quicken at the sight of a new brochure with electronic gadgetry advertised? I seriously feel my heart start to race as I step into a shop which stocks the latest gadgets and computers. I feel content stroking the keys of a computer keyboard and practically purr when taking a new object of my affection home... I HAVE to have the latest contraption that has been released, even if it means saving like crazy to get it. My favourite toy has to be the iphone, which fits perfectly in my hand, the sleek black casing smooth to the touch and the screen so sensitive you could almost blow on it to change page... What doesn't surprise me is that Munchkin seems to have inherited my obsession with all things electronic also, and would do any task set for 5 minutes on my iphone. What does surprise me is the ease in which she finds her way around the menus at her tender age. Her father also has an obsession with electronic gadgets so it makes sense that she has the love of them too... Apples and trees come to mind!

There was a great post recently on the Irish Autism Action Blog which included a link to online tests by Simon Baron-Cohen which would give you an indication of how strong your inner aspie actually is... Have a go and see how you score ;)

Wednesday, October 21, 2009

Was Mozart afraid of The Dryer Monster??

Today I took Munchkin out for lunch with a friend and was very pleasantly surprised how our trip into town went. We even managed to squeeze a quick browse around a clothes shop without any major incidents. Munchkin happily stood peeling stickers off all the new lingerie that had been displayed while I tried on some coats beside her. I had to let go of her hand to take on and off the selected coats that I had dragged over to the bra and knickers and she was very content to stay put while I did my impromptu fittings. I decided on a lovely new grey jacket and that was placed into the basket alongside several candles, some underwear, a schoolbag and some Christmas cards that Munchkin had discretely swiped and placed there as we went through the aisles. We only had two incidents in the shop where she bolted so it was a good day to try for lunch out.

My friend and I decided on a lovely restaurant we know were there is seating under the stair area next to the bathrooms where Munchkin could be contained in a high chair with a harness and we settled ourselves down and waited patiently for the lasagne to be dropped down to us. All the time, Munchkin entertained herself nicely with the sugar sachets and other condiments... All going fabulously... She even ate some chunky chips (usually rejected as MaccyDees skinny fries are the acceptable ones...)

I decided then that I would take her to the bathroom as it had been a while since she had been and I didn't wish to be frantically trying to dry out a car seat! My guard must have been extremely relaxed as I went straight past the wheelchair accessible toilet I would normally have gone into with her and went to the ladies toilets instead. Whilst she sat on the toilet, another lady had finished her business and washed her hands.... oh no.... how could I have been so stupid?? As the hand dryer went off just outside the cubicle, Munchkin threw herself, terrified and semi naked into the safety of my arms, screeching, panic stricken with the widest eyes you could ever imagine... I should have known better as have had her climb onto my shoulders in a cubicle as she waited for me to finish on the toilet before when a dryer has gone off outside the door. Needless to say, I think a visit to that particular restaurant in the future will be doubtful as she will associate it not with the pleasant and relaxed lunch we had, but the "Dryer Monster" which is what I imagine she thinks it is.

The "Dryer Monster" is not uncommon I believe and have heard it attacks many children on the spectrum. It has been known to frequent all corners of the globe! It particularly likes those with sensitive hearing and is related to the ferocious "Hairdryer Monster"...

Sensory issues affect a huge number of children with autism. All the senses can be amplified beyond what we ourselves could tolerate. This was explained so eloquently by Hammie in her blog Hammiesblog

"Autism is a sensory disability in which everything your child sees, hears, feels, tastes and smells is distorted. They may see every strand of hair on your head individually with more detail than a Dandruff commercial, hence the need to push your hair off your face. They may taste food in individual components that make the slightest change to the recipe seem like an entirely different food. Touch can be too light to feel or too intense to bear, or both! And sound most unfortunately can be very distorted, either because they hear everything and cannot tune in to what’s important, ie. your voice, or because they only hear the higher sounds or the lower sounds that are in their environment."

I have been lucky that even without any official Occupational Therapy, my own home program that I implemented has been very successful in desensitising Munchkin to a lot of her sensitivities, touch especially was difficult for her, but now will actively seek contact with me. I have noticed however, that her sensitivity to noise seems to be increasing, not hugely, but is increasing. She will several times a day (well several is a bit of an understatement... several hundred times a day!) "Whats that noise...." It could be a clock ticking, or a washing machine in another room or the neighbours dog barking, or the wind blowing etc.... I've also noticed that she is getting more interested in musical notes, particularly mid range tones. While at my mothers house, she has a piano and unlike most children her age, she does not bang and clatter the keys, rather will press them gently, finding the notes that please her best. She does the usual press every key in sequence but then will place both hands palm down on the ivory keys and press several keys with each hand until she finds some that sound pleasing to her ear and holds them down as the notes resonate through her hands... Perhaps I have a budding pianist on my hands...

Tuesday, October 13, 2009

Just answer your name... please!

People often comment these days how fast Munchkin responds to her name... this wasn't always the case. As with the majority of children on the autism spectrum, this was one of the first red flags that was raised with her. You could call and call her name to no response. I tried changing the tone and the pitch of my voice to grab her attention... zilch. I may as well have been talking to the kitchen wall (which I must admit, has had a fair bit of one way conversation over the years!)

I spent countless hours, days and weeks trying to teach my little girl her name, and to respond to it. All the usual tricks and lessons were tried... mirrors, photographs, videos etc and slowly she started to respond on occasion. Every night, our routine after dressing for bed, washing teeth and saying goodnight to her brother and sister we would stand in front of the bathroom mirror and I would say "Who's that?... Its Mummy"... and "Who's that?... Its Charlie." This was repeated every time we passed a mirror, or even just a shiny reflection in a window and I'm sure that I attracted strange looks from passersbys at times. Like so many other things I was trying to teach her, an opportunity to teach missed was an opportunity lost. Life was a series of prompts and knowing when to fade them out!

The day that sticks in my memory as a pivotal turning point, and making me realise that answering to her name was top of my priority list was the day she made my heart pound with terrorising fear. As with many children, my daughter is a descendant of Houdini... There is little that can contain her if she decides to escape. On many occasions, she has managed to give me the slip at home and I will find her testing windows and doors. From a very early age, she would scope a room as soon as we entered it, mentally clocking up the escape routes! Our home is typical of many families I know where it is under lockdown constantly. Doors and windows must be locked at all times, and I have constructed a "safe zone" at the rear of the house where there is a combination lock on the back gate so that I can at least boil a kettle without keeping her within my sights. I still don't trust her for a second as when she's a little older, she'll be up and over that fence before you can blink!

The day in question however, we were visiting a friend and her son. She also has a "safe area" at the back of her house as it's just been built, the acre of land its on has not been landscaped and backs out onto a main road. Her fences are slightly lower than mine so I was mindful of being on higher alert than usual. We locked the doors to all the rooms, only leaving the sitting room, a bedroom, the kitchen and play area accessible... The two kids were happily pottering around and keeping themselves occupied. Every few minutes we would check to make sure that they were ok and that Munchkin wasn't eating anything odd, like the charcoal from their fireplace...

I sat drinking a coffee and realised it was very quiet in the sitting room so went to check the kids. My friends son was sitting quietly watching television, but there was no sign of Munchkin. I checked the bedroom but she wasn't there. Out to the play area and once again it was empty. I started to get that panicky feeling in my chest. I ran back inside and started calling her name again.. over and over... My friend was searching in the bedroom, under the bed, in the wardrobe calling out constantly. I started shouting her name and checked the sitting room once again.. She was GONE!! Outside we ran, abandoning my friends newborn son on the kitchen floor tearing through the overgrown garden shouting, the fear evident in both our voices now. She ran down the lane towards the main road, while I headed to the back of the brush and the little gap in the hedgerow where cars were whizzing past. There was no sign of her at all. Tears were flowing now and it was all out panic stations. My mind went where no mothers mind should ever go and I ran back into the house, ready to call the Gardai (police). We did one more check of the house shouting frantically her name and there was no sound at all. Then, out of the corner of my eye, I saw something move in the corner of the sitting room.... I ran over and pulled the lid off this little plastic crate, barely big enough for a cat and there she was, all squashed in with the lid pulled over. I cried and shook with relief that she was safe and unharmed but I'll be honest, the shock of that day will stay with me for many years to come. THAT was the day that answering to her name became my primary focus.

Nowadays, as soon as I say her name, she replies quickly and firmly "yes!"

I have thought of this day a lot over the last week, especially in light of the story of Aisling Symes, the little angel whos parents have to deal with the overwhelming loss of their daughter. My thoughts are with them xxx

Sunday, October 4, 2009

For Luke and Lucy :)

Something amazing happened this week which has left my "Autie Family" on Facebook grinning like proverbial Cheshire cats... Since our very good and totally wonderful friend posted her news up on a status, we have all been walking around looking as if we have coathangers wedged in our mouths as we cannot stop smiling. There have been tears of joy, whoops of happiness and emotions running high in general. What could possibly have triggered this tidal wave of emotion....

Ok-wasn't sure whether to post this news.....
Yesterday, Thursday October 1st 09, Luke spoke 1st words, hes almost 10 and lost his speech at 15 months!!!! Never believed in miracles, but do now, its all down to such dedication of Lukes tutors...we had gi...ven up on speech, it used to be top of our wish list, but major toileting issues & understanding took over. Things just seem to have clicked with him now, we are so happy for Luke & very very proud.....and today more new words!!!!! His 1st word yesterday was an unprompted "BYE", in a very deep voice, amazing!!!!!

These words and the updates we have been receiving on his progress have given others renewed hope. He is the inspiration now for countless parents who despaired of ever hearing their loved one speak. Luke is responsible for many parents finding the strength and energy to carry on. I have never met him in person, but know his mother Lucy both online and in person. I met her through a special needs forum and she was my first facebook autie contact. Its not surprising to me that she has such an amazing son as she herself is an amazing woman with such strength and commitment to not only Luke, but to all her family. She has fundraised tirelessly for the Assistance Dog program, thrown herself off buildings (well absailed down them but to me its the same thing hehe), is always volunteering to sell pins, or lego blocks, or pack bags or whatever is needed to raise funds for services for our wonderful children. She has always been there to offer me words of support when I'm feeling low, or to celebrate with me when Munchkin achieves something. Thank you Lucy.... This astonishing and wonderful achievement of Lukes could not have happened to a more deserving person and I know that you will savour every word...

Even if we have given up hope at times, our children haven't :)

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