First, I want to thank everyone who reads this blog. You guys keep me going. I wish I could know you all in real life. Maybe someday, I'll travel around and try to meet every last one of you. In the meantime, it's great to hear from you here, have you as friends on Facebook or just know you are out there someplace!
Last week I was hit with a huge amount of self-doubt. There were lots of reasons, some I'm not going to get into just yet, but I was feeling hugely down on myself. But today, thanks to thinking about things a new way with the help of all of you, I'm feeling much better.
I'm never going to be tough in some ways. You will not see me organizing fundraisers, or hiring top advocates to come with me to IEP meetings, or educating everyone that looks at Janey with a hint of anything but total support. I am thankful there are people that can do those things. If there weren't, we'd be back in the bad old days, and Janey would not even get an education.
But I am tough in other ways. I can't tell you how many times I've had a morning that for many, for most outside the wonderful world of Holland trips, would be the roughest morning they've ever had, and still, I somehow got Janey dressed and ready for school, and drove her there. I don't know how many nights from hell I've had, where Janey barely slept, screamed or laughed all night, was possessed by whatever possesses her, and still, I got up the next day and went about my life. I've stood strong while Janey lashed out at me with hitting or biting, and responded with hugs and comfort. I've continued to shop while Janey screamed in a way most people have never heard a child scream, all the while holding her hand and whispering words of encouragement. I'm not looking for rewards for this, but I'm realizing it's something to be proud of.
Many times, I've felt guilty because I don't go to more school meetings, I don't go to autism rallies, I don't go to the statehouse to advocate for autism. I feel I don't do enough for the greater autism world. But this morning, a song came into my head. I'm not very religious, but I love religious music. It's my form of faith, I guess. Going to Sunday School growing up in rural Maine, there was a children's hymn we sang every Sunday. Here are the lyrics...
Jesus bids us shine with a clear, pure light
Like a little candle, burning in the night
In this world of darkness, we must shine
You in your small corner and I in mine!
I've always loved that hymn. I picture a huge, dark room, and me in one of the corners, burning a small candle to fight the big darkness. I can't light up the whole room, but I can light up my corner. And that is what I am trying to do with this blog. I can light my little corner. I can write honestly and truthfully and in a heartfelt way. That is something I am able to do, and it's my way of lighting my small corner. It's my way of being tough, but true to myself. And I'll keep doing it.
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label toughness. Show all posts
Showing posts with label toughness. Show all posts
Sunday, April 28, 2013
Thursday, April 25, 2013
When is autism going to make me tough?
I would like to get tough. By tough, I don't mean mean, or angry, or physically strong. I mean tough mentally, in that what people say to me won't bother me, in that I can not be moved to tears myself by Janey's crying, in that I can stand up for Janey always, to anyone. If it's true what the cliche says, and that you are given "special" kids because you are especially strong, well, as I've said before, a mistake was made. I am not strong.
What would a strong, tough mother do when, as I wrote about last time, someone cursed out my child in a grocery store? What would a tough mother do if, as happened when Janey was younger, she was promised a full day seat in preschool and another, tougher family got it instead? What would the kind of mother I wish I could be do when Janey has been screaming for hours demanding something? That tough mother would have confronted that woman and educated her on autism and politeness. She would have gone to the superintendent or higher demanding Janey get the full day placement she deserved. She would steel herself against Janey's crying, and absolutely never go out in the middle of the night to get her strawberry milk to make her stop crying.
I'm not doing opposite talk her---trying to say that being tough isn't really the right approach. In those cases above, it is. Being tough is what I should be. But I can't. I'm no good at it. I heard the phrase as a kid "You catch more flies with honey than with vinegar" and I've run with it my whole life. I am not confrontational. I am no good at being strong-willed. I want to keep everyone happy.
Autism parenting is supposed to change that. I've read about that happening in countless books and articles. People who never thought they had it in them are marching into schools or politician's offices or public rallies and speaking up, because their child has given them the strength to do it. And they are making firm decisions about raising their child---no more videos! no more middle of the demands! no more giving in!---and no matter how much their child cries or hits themselves or seems to be falling apart, they KNOW they are right. They stick by what they have decided, and everyone is better for it.
What do I do? I accept the half day placement. I walk away from the nasty woman and go to the car and cry. I don't make any demands. I tell Janey no to videos, no to strawberry milk, no to her 3rd bath of the day, and when she cries long enough, and looks frantic and sad, I give in. I don't want her to be sad. I don't want to confront people. I don't want to demand things.
Somewhere along the line, a cosmic mistake has been made. I'm not the tough mother I should be. Either there's some tough mother out there waiting in line for her autistic child that was given to me by mistake, or the transformation that was supposed to overtake me once I was given the autistic child was blocked somehow. I don't think I'm going to get tough at this point. I mean, if Janey was being attacked by a lion, I'd jump in. I think I've got enough protective instinct to protect her in cases like that, and in fact a few times I've found I did, when I truly felt she or my boys were wronged. But it takes a lion attack style happening to bring that out. I'm not a warrior mother. I love my kids more than I love life itself, but that has somehow never transformed into what all the autism literature has let me to expect, a huge infusion of tough strength.
What would a strong, tough mother do when, as I wrote about last time, someone cursed out my child in a grocery store? What would a tough mother do if, as happened when Janey was younger, she was promised a full day seat in preschool and another, tougher family got it instead? What would the kind of mother I wish I could be do when Janey has been screaming for hours demanding something? That tough mother would have confronted that woman and educated her on autism and politeness. She would have gone to the superintendent or higher demanding Janey get the full day placement she deserved. She would steel herself against Janey's crying, and absolutely never go out in the middle of the night to get her strawberry milk to make her stop crying.
I'm not doing opposite talk her---trying to say that being tough isn't really the right approach. In those cases above, it is. Being tough is what I should be. But I can't. I'm no good at it. I heard the phrase as a kid "You catch more flies with honey than with vinegar" and I've run with it my whole life. I am not confrontational. I am no good at being strong-willed. I want to keep everyone happy.
Autism parenting is supposed to change that. I've read about that happening in countless books and articles. People who never thought they had it in them are marching into schools or politician's offices or public rallies and speaking up, because their child has given them the strength to do it. And they are making firm decisions about raising their child---no more videos! no more middle of the demands! no more giving in!---and no matter how much their child cries or hits themselves or seems to be falling apart, they KNOW they are right. They stick by what they have decided, and everyone is better for it.
What do I do? I accept the half day placement. I walk away from the nasty woman and go to the car and cry. I don't make any demands. I tell Janey no to videos, no to strawberry milk, no to her 3rd bath of the day, and when she cries long enough, and looks frantic and sad, I give in. I don't want her to be sad. I don't want to confront people. I don't want to demand things.
Somewhere along the line, a cosmic mistake has been made. I'm not the tough mother I should be. Either there's some tough mother out there waiting in line for her autistic child that was given to me by mistake, or the transformation that was supposed to overtake me once I was given the autistic child was blocked somehow. I don't think I'm going to get tough at this point. I mean, if Janey was being attacked by a lion, I'd jump in. I think I've got enough protective instinct to protect her in cases like that, and in fact a few times I've found I did, when I truly felt she or my boys were wronged. But it takes a lion attack style happening to bring that out. I'm not a warrior mother. I love my kids more than I love life itself, but that has somehow never transformed into what all the autism literature has let me to expect, a huge infusion of tough strength.
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