I hope everyone has had a good holiday break. The last few weeks were good for the soul, but when there are kids around, not very relaxing!
My youngest at five has got the most beautiful tan, having spent most of her holidays to date playing in the backyard with the bugs and her trampoline. She has been a very good helper to her dad in his man world of experimentation and tools. Turning into a good project manager and ideas person. My husband, the patient saint, will go mad amongst such strong minded females 24/7 I'm sure!
Vince has been working on different forms of harnessing solar and wind energy to create energy to run appliances or warm water/tiny house. He is amazingly excited about his projects and is now collecting empty cola cans and odd bits and pieces. I'll talk about that a bit in the Tiny Trailer Blog, but hear me when I say this: My backyard will never be the same again! Never tidy at the best of times, its definitely a busy messy hub of activity now! And amongst it all, little Isabella in her bathing suit looking as golden as the sun and as sweet as honey while she hunts bugs or wields a hammer!
And then there is my other precious flower. She had a rough start to her holidays as both her arms were put in casts to stop her from stuffing her bibs or hand down her throat. This was not an easy decision to make. Vince and I and the specialists ( a team of specialists across a few disciplines in fact) did all kinds of tests and observations to rule out any physical/medical reason for her behaviour. We thought, perhaps she is trying to indicate or fix something that is bothering her? Mia is non-verbal and mostly communicates through sounds, facial gestures and arm/hand movements. This part of the diagnosis took months. :(
Putting splints, I knew, would limit her in a way that goes against all we have worked towards all her life and we wanted to make sure before going to these extremes, but when your child is willful and has little to no gag or choke reflex it becomes a matter of life or death. Our biggest fear is at night when no-one can keep an eye on her. Even carers need to sleep.
These casts are only a temporary fix until they can make splints that can be put on or removed as needed. They tried half-casts, but Mia would have none of it and my wee little escape artist just wriggled out of them! So the casts went on and her sister helped choose the colours so that Mia at the moment has a hot pink cast on one arm and a purple on the other. My heart sank when I saw her in them, I felt like the worst parent in the world and she was so miserable the first two days, keeping her head down and using a deep mono-toned moan.....and then she started experimenting.....
And what I thought would be a miserable couple of weeks has turned into a time of exploration for her. She now looks AND reaches out for her toys! She is also focusing on things and looking at people when they speak. These are very difficult things for her as she has Cortical Visual Impairment (where in short her brain has difficulty seeing and interpreting the information it receives). Usually she looks, then looks away, and reaches for the object from memory. To see her focus her attention is pretty amazing stuff...and slowly but surly, her smile came back and she has found a way to express herself despite her casts. I'm SO PROUD of her.
But more importantly, I do not feel constantly anxious about her when she's out of sight. No matter what she does, she cannot at present put anything down her throat. I cannot even begin to explain the constant niggling fear. I had not realised I even felt like this until the casts were on and I noticed the absence of anxiety! I am hoping that she will grow out of this learnt behaviour with consistent application of behavioural techniques coordinated and applied across board.
It still is not plain sailing for Mia. The school holidays are the worst time of the year as the routines she loves are disrupted. With time she has improved (the first year she cried for six weeks straight inconsolable to the point of loosing her voice): We have learned to give her other routines that indicate holiday time and she has learned that school does come back eventually. In the meantime, we live in the moment. After all, the most important time is now. (Yep, taken from Kung Fu Panda 2)
And with that I remember why I like working, the endless reruns of the same movies do manage to drive otherwise perfectly sane people around the bend. Not that our family needs any help there!
Seize the day my friends,
M-
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