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Wednesday, June 2, 2010

Stim City

"Stimming is a repetitive body movement that self-stimulates one or more senses in a regulated manner. Stimming is known in psychiatry as a "stereotypy", a continuous, purposeless movement"

I am trying to find something profound to say, something that will stop you in your tracks for twenty minutes and leave you with the happy notion that what you have just read will make an impact on your day in some way. I want to paint a rosy picture that will pull heart strings and induce a warm fuzzy feeling that washes over you like a wave of love and serenity. All this is the polar opposite to reality as what I really want to do is crawl into a bed and sleep for about twenty four hours, then wake up and feel brand new. You see, as the parent of an Autistic child you spend some time looking from the peaks above out over the valley down below, marvelling at the progress you may have made. These advancements in comparison to a "normal" child's are minuscule, but for the Autistic child it is indeed mountainous headway, that is on a good day/week. However, when you seem to slide back down into the valley and can only gaze upwards, to where you once were, does it feel like that you have accomplished nothing. The paralysing despair that engulfs you during one of the "valley" moments can be hard to take.

And so the story goes for the past week. Pearl has been a lot more vocal and is getting into the habit of repeating a bit more. She also seems to be impressing the therapists with her curiosity and aptitude, at home though is where the war is waged. Stimulating her seems to have become next to impossible and she has developed a screech that is let rip when things are not going her direction. As soon as she figured out that the screech was a weapon of mass deafness it became theeee tool in combating Maman and Papa and, once employed could stop us at ten paces. When she is not shrieking at a pitch that is only canine friendly she is reverting back to all her old stims. She bangs her head against the sofa so I fold the sofa into a bed, cant bang your head now can you Pearl?. Her response is, tough sh*t papa I will find two objects and bang them together until your mind is a spaghetti like mess of fried synapses and burned out neurons. Cant find two objects to bang together Pearl? OK Papa I will grunt and rock and roar until the roof caves in the walls fall in on top of us. Think I am exaggerating this Apocalypse? Think again. Ask any parent how hard it is when a child enters the meltdown mode and they will inform you of the dark tunnel into which one enters, praying to see the light at the end. Add Autism into the mix and you have a Molotov cocktail that will wipe the placidity out of any household. We are also attempting to toilet train Pearl at the moment too and with that, single handedly keeping the kitchen towel business afloat. Its going to be a long haul but perseverance will win out in the end I think. As my friend Neil said to me "patience, and a mop is all you need Mally".

Tensions do rise in these situations but I think the important thing is to look at them as speed bumps and not mountains. Think big picture. On the plus side, all her behaviours point towards a little girl growing up and having the tantrums other kids have and that fighting with her brother over a toy is a good sign. She will hopefully be off to school in September with an aide and she will be changing over from one of her therapists to a new lady next month. Lets hope all these transitions are going relatively seamless. We have also found a lady, Emilie, who will work with her four times a week at home from next month on. The money raised so far from Running for Pearl (that has been put in a trust for her) will cover this new helper. So a big "CHEERS" to all who donated and have made that possible. It will free up a little more time that can be spent with our amazing Dylan who is just fantastic. Alicia and I are meeting with the Mayor next week to see how our housing situation is coming along. Alicia has written some harsh letters to him and with every right too, finally we will get him face to face and see how they are going to help us. Our TV slot airs soon we hope and we have been very complimentary to our town, now its time to get some pay back from them.

My running is very minimal at the moment, I have had issues with my left foot which healed fine. Then after about 18km's on Friday last my Achilles tendon flared up really badly. I have not done much since apart from a bit of cycling and ice it as much as I can. My aim now is to make it to the start line of the 50k in eleven days time and see if it holds up long enough for me to complete the race. But I know there are people who have far more grave issues and that mine is like Pearls regression, a blip. It will make me appreciate my training a lot more when I am back in full health, as will I appreciate the good things in my little Pearl, once my ears stop ringing. Wow, I don't feel like that 24 hour power nap anymore, thanks for letting me share. Time now to get stuck back in.

See you round the bend.

Mally.

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Running for Pearl

This blog is dedicated to my daughter Pearl who was diagnosed with ASD (Autism Spectrum Disorder) in August 2009. My goal is to raise funds and awareness by doing what I love....Running.