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?!
6 comments:
Samantha, it's not the Off switch you need, it's the Pause and Rewind buttons.
If you were to pause and rewind, on playback you would probably see yourself doing eveything you should have done and be entirely without any sense of guilt.
You are far more informed on autism than me so I really don't mind if you feel I'm speaking from a position of ignorance but I did read that it is one of those conditions where the cause simply isn't known (idiopathic) in the majority of cases.
It pains me to think you have such guilty feelings and that you've lived with those for the past eleven years, I can't imagine the anguish the emotional roller-coaster ride must have caused you. I wish there was something I could do to dissolve those feelings for you because I am sure they are not deserved and may even be holding you back from from reaching your full potential in the creative things you enjoy doing.
The view from an outsider is that Mikey has got a wonderful caring Mother and that he has received an abundance of affection and devotion that many children would never experience in their lifetimes. Instead of allowing those strangling thoughts to invade your day-to-day living, you should pat yourself on the back for doing such a fantastic job and being a great Mum to Mikey. There are very many people who would have fallen to pieces very early on.
You should not be saying, "I'm sorry Mikey". It is us who should be saying, "I'm so very sorry Samantha that the support you needed to ease your journey through this, simply wasn't there".
Thank you John, as always your words give me comfort.
I agree with you about the word disabled.
Wow i wish SafeSpace has been invented when C was small! Would have saved a lot of walls! His bedroom walls are padded which covers a multitude of....well...
And i agree with everything John says :)
Thanks Casdok :)
Yes my poor walls took a beating and a half pre SafeSpace, we have only had it for a few weeks...the OT's would not sign off on padding for the room, typically I had to fight tooth and nail for two and a half years for it. sigh. But at least now we all get sleep at night, and how weird is that?!
Samantha, I am new to your art and blogs, and found you through John's blog. I know nothing about autism, but heaps about guilt! We burden ourselves too much with guilt. and there comes a time when we have to let go of guilt. It can be like a crutch, as painful as it is sometimes. You are no use to anyone, yourself and your son included if you are riddled with guilt. Take one step at a time and cast off the burden of guilt, and be all that you can be for your creativity, yourself and your family.
Hi Maggie,
Thank you, your words ring true. I am finding lately to channel that negative emotion through art is working really well for me...perhaps that can be my key to offloading that horrible burden.
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