Tuesday, March 31, 2009

I should feel lucky

i should feel lucky, after all it's only autism. at least he looks normal.

yes someone dared say that to me. I was insulted on so very many levels. yes I still have my child with me and I can hold him and kiss him and love him. he is alive and I am grateful. this thief, this wolf in sheep's clothing, this autism, will not physically take him away from me. he is right here in body.I can hug and kiss him. I am grateful. he has come a long way and I .AM. GRATEFUL
it takes away so much from him.it hurts me to watch him struggle.
to miss things that other kids love because it's too loud or too busy or too anything. add to that he is high functioning so he understand that he is missing something.
taking away his favorite foods and replacing them with barely passable substitutes so that he can function. it works but it is another sacrifice. another concession I wish i didn't have to make.
watching him slip away into his world when he does eat something he shouldn't. watching him cry for no discernible reason. scratch at his socks and pants because they hurt him just by being on his body. knowing he struggles through holding himself together at school only to fall apart completely when he gets home and didn't get the snack he thought he should.

please dont ever say its only autism. that hurts me. it's not ONLY autism. while it wont take him away physically I have no idea what the future holds for Sammy. Unless you live it you can't possibly understand the struggles he faces. the struggles I face as a mother, to see him as a child with a disability and not just a child who misbehaves.
please don't suggest to me that I need to discipline him more. don't think for a second I haven't tried it. I have it doesn't work. he doesn't care.
please don't tell me he needs a good beating. there is enough hitting in this house without me hitting him
please don't tell me I am too easy on him, hard on him, too strict or too soft. unless you live this life you can't possibly understand. if he melts down in public. don't stare at him. your dirty looks are not helpful. he may have autism but he also has feelings. I understand it may be quite a sight to see him screaming like the devil, but your advice isn't helping get me calm enough to deal with it. in fact I may just consider hitting you. please when he is throwing a fit don't tell him you will take him home, talk to him about Santa or the Easter bunny, or tell him the police will come. he doesn't care or understand that concept yet. he may look normal, but every minute of everyday demands are placed on him that he cant understand or handle. just because he looks normal doesn't mean he is.

please understand when you say those things, it hurts me.
it ISN'T only autism.
you really have no idea


  1. Good for you. I love you. And Sammy.... and Tyler, and AJ, and Nate. And even Dan although I don't know him well. You are the most amazing woman I know!

  2. This blog is amazing. You are amazing. Wow, I see where you saw your sammie in my Andrew...


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