It all signals an unusually early beginning to tornado season in the South.
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My boy sits at home with me, kept from school today by a nagging cough and congestion that will allow him even less rest than his little body typically withholds from him. He sits, curled up in the corner of the couch, the deep camel color of the fluffy cushions seeming to envelope his tiny little frame. Luckily, I charged his iPad, which provides him both a happy respite and keeps him somewhat still, with the exception of the perpetual motion of his hands and feet. In these moments, one almost forgets - until you hear him speak - that he has special needs. He's just a boy - a sick little boy - curled up on the couch, making through a sick day.
There are silent battles on the horizon. There is the annual renewal of Jack's Medicaid/Katie Beckett Deeming Waiver, of which I have submitted the first portion, knowing that the bulk of the work is yet to come. There is a fight approaching for getting Jack's private OT services covered through Medicaid without his new IEP. There is the meeting to set that IEP that has been pushed up several weeks so we can play this strange game of paperwork that Medicaid sets before us.
It signals an unusually early start to IEP season in the Reinventing house.
There are the everyday battles to get Jack to eat, walk, talk spontaneously, and to reach beyond the echolalia into speech that we can all understand. There are the struggles to help him understand what we are saying. There is the up and down of the roller coaster that we know so well.
Then, there are all of the silent battles - some little and some big - that have nothing to do with autism, but still permeate our lives. There are those little struggles that become the straw on the camel's back at times.
For the moment, I sit adjacent to my boy and see the calm before the storm. His little foot taps the side of my leg in a regular pattern that he maintains so that his body is always partially in motion. His honey-colored hair and eyes catch a flicker of light from screen of his iPad as he plays with a peaceful intensity that he mastered long ago. He finds calm in the hyper-focus, and that calm can be seen with the way he relaxes against the cushions. While he's congested, drippy, and coughing, he's also at peace.
While sick days create endless problems - missed class, missed therapy, and sometimes behavioral issues - illness seems to bring calmness and stillness to my boy. There is a sympathy you feel for your child's state of health in these times, but you also have to appreciate those moments when he is too tired to run away. Sick days create a day to sit and watch my boy, held still by his lack of energy, and enjoy the brief opportunity to be near him. I can take my time marveling at the wonderful little person before my eyes.
I know that the storm is coming. I can hear it on the horizon. Tomorrow will once again bring the challenges of a world that sits in such opposition to my boy's unique neurology. For now, that storm is being held momentarily at bay by a quiet sick day at home and a lack of energy; we have put the world on hold for my boy's illness. While I hate seeing him feel sick, the calm and peace that comes with illness and lethargy has to be appreciated for the strange way in which it stands in contrast to our usual reality. It is one of those blissful moments in which I close my eyes and ask everyone and no one...
Please make my baby well, but please don't let this calm end.