Over the last few days in particular (and the last year and a half in a broader sense) I've seen criticism arise about "those bloggers who sugar coat autism."
My posts on autism are probably regarded in that way by some.
Other people suggest that I find myself more on the "acceptance" end of the debate because "your daughter must not be 'that autistic.'"
I've managed to suppress my knee jerk response to that particular comment every single time it's come up (barely... just barely...) with one exception when it was brought up (in a general sense) on my Facebook page by a stranger and, after a particularly difficult day I pretty much lost it and turned into a raving lunatic.
I've long thought about writing a post about the reason that I don't delve into certain areas that might make some readers feel they're getting a more authentic autism mom experience on this blog. It's the same reason I try to avoid embarrassing stories about any of my kids (or my husband, unless he gives me his permission).
It's because I don't want them to grow up and look back at any post on this blog and be embarrassed by it. And while I really have no idea how much of what I've written Maggie will understand, or if she'll ever be able to read it (or, on the other hand, if she can now) I write with the hope she might one day.
In the same vein I wince when I read posts, or webpages by prominent organizations, that speak about having autism or caring for someone with autism as a fate worse than death, because I can imagine her, and other young people like her, Googling and reading those same words and being devastated by the claims.
What I most want my writing to show is what is truly true. I want it to show that we love our beautiful girl exactly as she is. That caring for her and watching her grow and helping her learn is an immeasurable gift.
Some days are hard because Maggie is having a tough day. But some days are tough because Sadie or Patch are having a hard time, or because the baby is cranky or because I woke up in a terrible mood and am failing miserably at turning it around.
On the other hand some days are wonderful.
And more than that I've found that I appreciate the little accomplishments more than I ever could have imagined if I hadn't watched one of my children struggle and work to master skills that come easily to most children.
Then there are the days when I look at Maggie and find myself thinking: "So this is what it's like to live with a super hero!" because her super strength and determination can be both exhausting and awe inspiring (often both in a short span of time).
This April I'm planning on writing a bit more than I usually do about autism. I have a few posts bouncing around in my head in response to some of the most frequent questions I've been asked over the last year and a half.
But tonight as I get ready to turn in for the night I wanted to share some of my favorite pictures of our littlest big girl over the last four and a half years:
Interesting. I will give you a quote from a blog I follow. (the author's ds has just been dx'd with autism.)ReplyDelete
"To those of you who shared your inspiring stories of how your children were diagnosed on the ASD but grew out of it, thank you for sharing, but that's not our situation." He goes on to say:
"But his diagnosis was more severe than we had expected, coupled with the specialist's belief that he also has some cognitive impairment, so I am in the process of letting go of the old hopes. It is bitter, but at this point I must rid myself of what I want or wanted to be true and embrace what is in fact true."
(Me talking now) I feel bad for this guy because who can tell what the future can bring. I didn't think I sugarcoated my dd's younger years but apparently to him it must sound that way. (and he did say as much to me) (he must have missed the part about the principal who did everything to keep dd out of her school; or the Girl Guide group that lied about a sleepover so she wouldn't show up) Um yeah.
It sure doesn't sound like you're sugar coating anything here. People are weird. It sounds like you've got a great therapy plan going and things are really moving forward. But it takes up a large part of your life (in addition to the regular parenting of a mid sized family and your ongoing health issues) So I don't think you spend a lot of time on the couch eating bon bons! LOL Keep blogging;you're great!
Thank you Patience! I think it's such a big thing to remember how much can change from year to year. Sometimes that's the difficult part, but it's also kind of the amazing part, because on the one hand I find myself wanting to picture where we're going to be a year from now (or ten years from now) and I have no idea, but at the same time the last year has made me so hopeful.Delete
I don't comment often since I'm usually reading with a baby in my arms, but I just had to this time. I so look forward to your posts BECAUSE of the positive spin you often have about Maggie. I love to physically read and see your love for her, see her flourish under it, and see you share the side that so many don't see hardly ever. I can't wait to read your posts coming soon. Thank you for sharing this side of your wonderful life!ReplyDelete
Hi Sarah (and I'm so glad you did comment! I'm the same way in my blog reading because I'm usually nursing and on my phone and it makes me so much less likely to comment!). Thank you so much!Delete
I remember when you first posted that photo of Maggie in the air return vent (or is that the hot air register?) - holy cow!!! I was (imagining you at home) "hey, where's Maggie ......... OMG!" And then, what if she had crawled all the way down into the vent (like those movies where the robbers use the vents to break into a jewelry store). You'd have been on the 5 o'clock news ("Pamamedics had to cut a small child from an air vent where she had crawled, just to see where it went....") It would be funny if it hadn't been so scary. One day it will just be funny...ReplyDelete
I think there is some truth to not getting an accurate picture of what caring for an autistic child is from your blog, but if someone wants that there are probably other blogs where the parent gives full vent to everything that happens. I read your blog because you are a Catholic mom (and dad) raising Catholic kids, who happen to have a child with autism. That you choose not to describe every challenge you face in every gory detail is what I consider modesty, and good judgement. Too many people use this medium like a picture window without curtains. Privacy while sharing is always important. I also admire you in that you take into consideration the embarrassment to members of your family, even in the future.
For these reasons I love to read your blog, because it reflects virtues (modesty, charity to family, patience, love) that are often in short supply today. You show it is possible to share without exposing, and I love that.
God bless you. Have a most Blessed and Holy Easter. He is risen, Alleluia! ~ Bonnie
It's one of my favorite pictures too because it's just so Maggie. And I totally have pictured that 5 o'clock news moment so many times with her! We actually have the bed in her room bolted to the floor because she pried a huge bolt out of the wall to remove the screen cover on the vent in her room and no matter how we secure it she always breaks it off! And thank you! I hope you have a Blessed Easter too!Delete