Lately I have been feeling guilt. I call it the Umbilical Cord of Guilt. Michael has Autism and it is my fault, somehow. It is in my head and heart every second of every day. Guilt is not like self pity, it doesn't go away, strangles me but it also provides a kind of strength, I have to clean ludicrous things at stupid hours that guilt gives the needed impetus when my body is tired and my mind wants to slam shut with my eye lids.
We are sitting in Mikey's SafeSpace, which is a room within a room, a soft walled big tent that zips up. In he goes at night and he loves his space, he cant kick holes in the wall, switch the lights on and off all night leap from the windowsills, and.. he sleeps. The SafeSpace has given Mikey the comfort he needs to settle at night. So, we sit and I say "Mikey I'm so sorry. I love you son" My voice trembles and my eyes well up with tears, I'm fighting them back, I don't like Mikey to see me cry and it upsets him too. Not tonight. Tonight he leans forward, pats me on the head a few times and goes right back to dropping his beads onto his flappy. He pauses, looks at me then scooches over for a hug, kiss on the forehead followed by the usual good night armpitting. That's my face versus Mikey's armpit. My face very rarely wins these tussles but I still manage to convince myself that when I say "I am the boss of you!" his laughter means acceptance of my authority. (Yeah, dream on.)
Having a disabled child not only means a lot of hard work it comes with the added bonus package of constant emotional turmoil. A rollercoaster ride of emotion and you cant get off, you learn to deal with so many things. Disabled, I hate that word so much now. That WORD in relation to Autism just doesn't seem or feel right to me. It is like calling a dog, who is not a cat, disabled for not being a cat. I think too much, yes I think I most definately think far too much. Where's the off switch?!