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 twenty and severely autistic
8 comments:
And eventually with every one of us lighting up their little corner, the room will be lit up!
I love that sentiment. I am also quiet, and shy and generally don't want to stand out. But isn't autism an introvert's trait anyway? I suspect that if really extroverted moms have autistic children they naturally lean towards spreading awareness, organizing rallies or building giant communities. But you know what, they would be doing that anyway, if not for autism then for some other cause in their lives.
We are introverted, we stay out of crowds and the spotlight. I don't think we need to become someone we are not just for our autistic children. And we all know how they feel about crowds and spotlights ha ha. I like to be me. You should like to be you too, I'm sure you're a very cool chick :)
You are tough in so many ways! I am so impressed reading about how you get through days where most of us couldn't last five minutes...
If you're ever in Milwaukee, stop by! ; )
Shine on, Suzanne, shine on.
I believe that the avoidance of confrontation is just one lesser aspect of softness. With a girl like Janey, who requires "unfocused attention", this softness probably is the most important thing in the long run (-combined with the toughness of the tenacity in everyday life). Glad to have you back on your feet again!
Lovely, Suzanne…I'll bring my candle to your room anytime! :)
Keep writing so I don't have to. :) Glad to see you acknowledge your strengths!
I think you do more writing this blog than you could ever do attending rallies. For those of us reading it who don't have an autistic child, you give us a sliver of understanding of what it entails. You help us to see a child like Janey as precious and lovable and extraordinarily difficult.
I feel like your way of doing all that is by writing this blog, and sharing very personal and private things with all of us here. i think that a very breave thing to do, and its not something that is easy.
you dont sell yourself short, you are just as proactive as the more extroverted moms out there, just different.
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