Autism Daddy has talked a bit about hating autism. At first, I didn't understand it. I love Autism Daddy, I love his page, I love his blog. At first, I was confused about what he was saying until this post, to which I responded...
Autism Daddy is right on again. I love Alex, I love who he is, I love him unconditionally but if I didn't have a black eye right now because he smacked me with his sippy cup, I would love that. If I didn't have a bruise on my arm because he knocked me out of my chair yesterday, I would love that. If I didn't have to clean the bathroom floor, bedroom carpet and bleach the tub today- I would love that too. You can admit you don't like the autism without saying you don't like your kid. and it's ok. Thank you, Autism Daddy for putting that into perspective for me :)
Pooping Red Guy and friends responded too, right here. and no surprise, I had something to say to that too...
Just because we don't like the autism and may admit to it online with other parents who understand our feelings because they are right there too, does not mean our children have ANY clue how we feel about it. When I started hearing AD talk about hating the autism, I was a little upset, kinda shocked that he would say such a thing because Alex's autism is part of Alex. How do you separate that? But the post you are talking about cleared it up for me, helped me understand what he was saying. I love Alex, but I don't like him painting me with poop and snot. I love Alex but I don't like freaking out because someone left the door open. I love Alex but I don't like that feeling in the pit of my stomach when I look up and cannot see him hiding behind a family member followed by my scream- ohmyGod!! WHERE IS ALEX!? I love him and there are parts of his autism I do like- his rocking is adorable. but there are some that I hate.
Alex does not know, my husband does not know, my other children do not know that I hate autism. I hate autism are three words I would NEVER speak out loud. I'm glad AD gave us a chance to admit it in "secret".
I thought I was done with it, I had spoken my piece on it and that was that. Apparently not. I just read this post from Rebel Souls.
***First off, anything I have to say here does not reflect how I feel about ANY of these people, especially Autism Daddy and Rebel Souls. I love them both dearly and I follow Rebel Souls closer than I follow most. I love that woman very much. She has a beautiful outlook on life and she makes me smile. She is not clueless, she lives both ends of the spectrum. She lives the good parts and bad parts and knowing this, I respect what she says.
But I don't think it's as clear cut as love and hate. or maybe it is just as murky as love and hate. love and hate are separated by a fine line. There's not all that much difference between them. They are both very strong emotions that you only have when you CARE. I just don't think this issue is black and white or even things we only feel for the children with autism. I can't say I hate autism but I can't say I love it either. Autism for me is a mixture of all of it. There are good parts, there are bad parts, but that's with all people. it's called being human.
- I hate fighting with my husband over kids. Does that mean I hate my husband? That all parts of marriage suck and I want a divorce?
- If I hate the fact that my 17-soon-to-be-18year old just screamed at me last night that I have never done anything for him, does that mean I hate the 17-soon-to-be-18year old? Does that mean that all parts of having a 17-soon-to-be-18year old totally suck and I don't want him anymore?
- I hate that my 16-soon-to-be-17 year old thinks now that he's almost his brother's age he can do what he wants when he wants and we shouldn't say anything about it because, well, bubby did it. Does that mean I hate my 16-soon-to-be-17 year old? That I don't love him?
- I hate that my 11-soon-to be-12 year old is getting a teenage attitude of why do I have to? Does that mean I hate my 11-soon-to be-12 year old? That I don't want him?
- I hate that my 5-soon-to-be-6 year old throws temper tantrums, doesn't listen, screams and calls names. Does that mean I don't love anything about him?
Having a child with autism isn't all that different from the rest. There are parts of it that I don't like but there are parts that I love. and that is ok. It does not mean I don't love my child. It means I am human. It means he is human. I choose to recognise that the people I love have faults. They are not perfect, they act out, they do things I don't like, some days they drive me insane but I love them.
I don't think the issue is as clear cut as the all encompassing "I hate autism", I think that phrase, giving a name to the behaviors and the struggles is as close as we can get to expressing our perfectly normal feelings. I think that the parts of autism we hate are ok. I wish he could tell me why he's upset. I wish he could get off the bus, come running in the door and say, "Mom, guess what happened at school!" Hell, I'd settle for "Mom, I love you." I wish he was potty trained, I wish he could use a spoon, I wish he could dress himself. I wish I could take him to something as simple as a family gathering without worrying for weeks ahead of time trying to figure it out. I wish I didn't need gates and locks, I wish I could relax, I wish I didn't have to be in arm's reach at all times. I wish he could grow up to live on his own, fall in love, have children. I wish I could have the chance to dance with him at his wedding. I hate that autism has taken these things away from him but I can't say "I hate autism." same as I can't say "I love autism." It is what it is and I love my boy just so. Doesn't mean I like everything he does, just means I love my son.
Wow...Great post!
ReplyDeleteThis has been such a back and forth debate. I try and see things from all perspectives. It's not a black and white answer...it's beyond love or hate, there are too many things involved.
My son says he hates having Aspergers. If I say the same thing...he gets mad and takes it personally as if I'm saying I hate him. In truth, I love the things about Aspergers that make him unique, brilliant even. However, I hate the anxiety, the tantrums, and the social isolation. I have learned that I can not voice that to him.
ReplyDeleteAutism is what they have not who they are. People have cancer but NOONE loves cancer. Come on people. Stop fighting about stupid things like this. Don't we have enough to fight for every day.
ReplyDeleteI didn't see any fighting going on...
DeleteStephanie, you got it right! Do we shame parents whose kids have MS or diabetes or epilepsy or severe allergies and say they hate those particular conditions? NO! So why are we supposed to just love it when our kids have autism that results in meltdowns, severe anxiety, and an inability to form normal friendships? I love my daughter. If I didn't love her I wouldn't be so hurt by the illness that is destroying the quality of her life.
ReplyDeletehaaahaaa! Go Stephanie!!!!! I so agree.... we can play word games (looking and searching for the right word to express emotions, like Love vs Hate..etc. I too hate Cancer, alzheimer's, epilepsy, Diabetes, Parkinson, muscular dystrophy, etc. these are circumstances we have no control over... and find that our situation is ONLY to accept them.
ReplyDeleteHere is what it would look like saying it in black and white..... My dad has Alzheimer's and I love Alzheimer's and my Dad too! *($%^ yeah right!!! (dumb, who would say that?)
I hate Alzheimer's and Love my Dad..... I hate Cancer, I love my cousin.... I hate autism, I love my daughter!!!!
We deal and are forced to live our lives to the best we can, love them and hate the circumstance of the disease.
Another great post, Mac. I like it!
ReplyDeleteI posted something similar on my blog. I don't see the issue as black and white as either all love or all hate. We can hate situations, and not the neurological wiring of our kids. I hate, hate, hate picking up diaper stuffing off the floor as I go through the 3 freaking hour nightly routine of getting him to bed, but I don't hate my son and I don't hate autism. I just hate the situation.
ReplyDeleteI totally agree..I love my son with all my heart..I don't like autism but it is a part of him
ReplyDeleteThank you for this perspective. As the mother of two little boys with autism, I spent the first couple of years after diagnosis beating myself up for a million reasons. I'm done with that now, so I really don't need anyone else doing that just because there are parts of autism that I hate (or days I hate it more than others). There have also been days that I can honestly say I LOVED autism, because it has allowed me some amazing moments with each of them that, were it not for autism, we'd have never had. But dangit, when I'm in the poop trenches (and I have been there, and we may not be out of the woods yet), I reserve the right to HATE IT!!!!
ReplyDeleteI do hate autism! I love my son! It's not the tantrums, anxiety, self injury, etc. that I hate. We can deal with the day to day. It's what autism has stolen from him. I hate autism because it has taken away so many things that other people don't even have to think about. I hate that he has to work so hard at things that come naturally to typical kids. I hate that it took months of therapy for him to be able to say mama. Not because I don't get to hear it but because it was such a struggle for him. I hate the uncertainty of his future. What parent doesn't want their child to have it easy? I don't understand how anyone can NOT hate autism. I understand that it's uncomfortable to talk about but I'm glad that it's being discussed.
ReplyDeleteI hate autism too--hate it with every breath in my body--my child is low functioning and I hate autism....I hate what it has robbed my boy of--I hate what it has robbed my other two kids of and I hate the fact that it is never over, that even when he makes progress he can then regress --that we can't enjoy the holidays with extended family---that everything is such an exhausting struggle and a fight to get him every opportunity I can--I hate it and there isn't anything about it I like....I love my son and I hate autism
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