This is Tigerlily, a few years ago.
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Its at her Birthday Party, notice the blank expression.
This is her checked out face. Those of you new to the lifestyle may not yet recognize this face but those who've been around are probably very familiar with the zoned out expression.
One of the battles we've won, is against this expression. She would retreat into her world for varying lengths of time, facing us with this expression, not hearing us, not responding, just there blank faced. This wasn't a constant but it was a daily. I am so very lucky to have albums full of happy Tigerlily pictures. However, this expression haunts my dreams, for she was absent from us, when this face was present and to me that face represented a failing on my part.
I would love to be able to explore the inner workings of my child's mind. Where was she, where did she go to, when this world was too painful, too loud, bright, tactile or scary. I believe the term for this is disengaged, she would still move about and be doing things, but not interacting with anything outside her own little world. When this photo was taken she had just recently been diagnosed as HFA. I was just beginning to understand what her diagnosis meant. I was devouring books on the subject and researching into the darkest hours of the night. Eventually I read a book about floor time therapy. I was exhausted at the time and the technical and medical jargon were unfamiliar, so I may have completely misinterpreted it, and have no wish to anger the author by misrepresenting it. So instead of linking it here, what I'll tell you is what I took from it.
In a nutshell the zoned out expression meant that this world currently sucked and her own felt much better to her.
My frazzled, exhausted and depressed brain came up with a ridiculously simple solution.
Make this world better than hers then.
I know, but keep in mind I was averaging 3-4 hours of broken sleep each night at this point. So simple was good for me. So that was my goal. To make this world better. So to get Tiger to stay with me, I set out to make her life awesome, give her everything she needed and wanted, be the best friend and playmate ever. Tiger was already in speech and physio, RT and OT and just I just rolled the better world plan right into it. I tried to turn all of her therapy into fun games. I bought all sorts of specialty toys and therapy equipment (see post Buying A Cure). I turned the sun room into a very special playroom for us. I made Tigerlily therapy my full time job. This led to all sorts of interesting discoveries, a lot of Tigers issues are with sensory inputs. I learned that she really hated artificial light, so I started leaving the lights in the house off unless they were really necessary and playing outside as much as possible.
I learned that feeling too warm was a real issue, so I kept our place cool and stopped trying to layer the kid up when she was outside.
I learned to pay very close attention to every little nuance of her behaviour and to watch her hands, for her hands told the story, when she could not. Twisting fingers, splayed hands, pinching and scratching the different stims indicated the different levels of discomfort, all depending on what was going on. By watching her hands I could intervene, remove or change what was happening, and when the hands stopped, we could move on again.
Slowly but surely this naïve and oversimplified approach combined with all the therapies and supplements, the routine and structure she needed, helped to make that expression a seldom seen affair. The greatest side effect being her increased happiness and her smiles.
I'm happy to say that Tiger hasn't checked out on me in quite a while, and I'll call that a win.
The High Functioning Life, where we can celebrate any win we want to.
HFL Mama
Strength and devotion. There is no task to hard or hurdle to high that you have not overcome. To say you are my sister is an understatement all I can hope is that I can be as devoted as you and Ian are. Tiger is remarkable and loved.
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