Tuesday, May 01, 2007

Inside out: Blogging Against Disablism Day

Blogging Against Disablism Day, May 1st 2007

This post is written in honor of Blogging Against Disablism Day. To find other participating blogs, click here.

Scenario One:

I'm sitting with a group of college staff members - thoughtful, open-minded, warm-hearted young people in their first professional positions. They are talking about Richard, a student who is probably on the spectrum. He is finishing a rocky first year at the institution. He's been without a roommate since the first weeks of September. He has struggled in many of his classes. He has made few real connections on campus.

The conversation focuses on preparations for next year and centers on concern about Richard's ability to manage placement with a new roommate.

"Couldn't he have gotten a single room for medical reasons?" someone asks.

"He probably could have, but he didn't request one," someone else answers.

Conversation turns to the reasons why it might be difficult for a new roommate to adjust to life with Richard.

"Richard talks to himself as he walks around campus."

"Actually he switches his voice to a higher pitch and talks back to himself."


"Apparently the high-pitch voice has a name. Suzanne. He talks to her, and she talks back."


On one level, the tone of the conversation is respectful and factual. But I think we are all aware of an undercurrent of incredulity, bemusement, and perhaps pity that is building momentum just beneath the surface.

I'm not sure where the conversation is going and I'm not sure I want to go with it, so I open my mouth.

"When I look at Richard," I say, as heads turn toward me, "I see my son in ten years."

My words are followed by a very thoughtful pause.


Scenario Two:

I'm reading blogs. There are no new posts on any of my regular reads - the blogs written by parents of children with autism or the blogs written by autistic adults - so I start surfing and I find myself in the world of "mainstream" mom-blogs. I read thought-provoking, insightful prose by mothers whose children are not autistic, are not disabled, are not developmentally delayed.

I am startled to find that so many of these moms seem so much like me.

Then I am startled because I am startled.

I read a post written by a mom looking for support and reassurance. She has a child who is "clingy," who wants to be held, who can only fall asleep in her mother's arms. In this lengthy post, I see flashes of Bud as a baby, Bud as a toddler, myself as a mother. This mom is writing, she says, for reassurance that she is not alone; she wants to know that others have experienced something like this. She's writing, she says, because she is starting to panic, starting to believe that she is not handling this clinginess the "right" way, the way that will be most helpful to her child. She wants to know what other mothers do to get through these moments of panic and self-doubt.

I have a lot to say. I click on "Post a Comment" and the words flow. You are not alone, I say. I have been there, I say. And this. And this. And this. And this, I say.

And then I finish the comment, and I freeze and think:

This mom - this panicky mom - may follow my comment back to my blog. And then she'll discover that Bud is autistic. Bud - the baby who was clingy - the toddler who could not fall asleep unless his arms were wrapped tightly around my neck - the child who reminds me so much of her child - is autistic.

The parts of Bud that remind me of her child are not the parts that pointed to his diagnosis. They are traits shared by many children, autistic and neurotypical alike. I know that. But she may not.

She is looking for reassurance and support - but not, certainly, from mothers like me. She wants to know that she's not alone - but it couldn't possibly help her to know that I am in the seat beside her. She is looking for help. I have nothing to offer.

I delete my comment. I leave nothing in its place.


Sometimes the disablism we confront in the world outside is a lot easier to handle than the disablism we confront in the world within.


kristen spina said...

Simply brilliant. Thank you.

Ange said...

The 2nd half really struck home with me. I remember belonging to a parent board when my first son was born and not responding because I had a child born without his corpus callosum. I felt parents would think "but that child has such and such...so it's not the same." Now as I have two children with disabilities I often find myself caught between two worlds...I often feel like I can't have empathy or give advice to parents with children with disabilities either because my children aren't disabled enough. I have my own internal battles related to disability...which are still taking shape and maybe I'll blog about soon. Thanks for the thought-provoking post.

Anonymous said...

As a mother with two NT children, I feel similar constraints as you do in your Scenario 2 when I consider posting a comment on your blog. I find it interesting, how easy it is to discount all the things we have in common, all the things our children have in common, in favor of what appears to divide us.

Thank you for a wonderful post, and for being such an articulate advocate.

Anonymous said...

I just found your blog yesterday. We are in the same boat...I don't get out much. Nathan is 2 1/2 and I too, have a small circle of people (therapists mostly) that I can talk to...I belong to a tight knit group of moms on a message board, we have all been sharing together since before Nathan was born. Yet, I feel inhibited from offering advice at times because Nathan has autism and if our children have things in common, I don't want them to worry.

Holy cow, are we living the same life?

I will be a frequent visitor here. Thank you for your wonderful virtual living room.

Anonymous said...

Oh, Mom-NOS, hit "undo"! You have so much to offer moms of NT kids. Imagine if more moms could learn to parent the way you do, with such patience and empathy and consciousness and intention and respect. I learn from you all the time.

I know that getting this reassurance isn't really your point....the point was about internal disablism, and I get it. But still, I'm sitting here crying at the idea of you deleting that post, which surely contained such helpful camaraderie and advice, believing you had nothing to offer that other mother. It's true that some of our kids will have more in common than others, but your parenting is a model anyone could learn from.


jennifergg said...

Oh how I agree! When I link to another mom's blog, I always explain that I have a blog primarily for parents of children with Down syndrome, as if she needs to know this, as if I need her permission to include her and that her acceptance means acceptance of my son and me. Why oh why do I do this???

Anonymous said...

We scrutinize our children so much for autistic tendancies that we forget that a kid is a kid is a kid. You are a good mom, period. Your advice has great value, don't ever doubt that. I've learned a lot from you, that's for sure

The Jedi Family of Blogs said...

So true, MOM, & so sad... especially since we know how wonderful life can be with our kids, for all the fear around their differences, & have picked up some nuggets of wisdom over the years that can apply to any kid. Just shows how narrow the boxes can get... Hooray for busting out of the boxes!

MOM-NOS said...

Thanks for the reassurance on this one. It was not easy to hit the "Publish" button and out myself.

Jane Plane, thanks for that. I'm glad that you commented this time, and I really, really hope that you'll continue to comment without constraint. (Funny, isn't it? Perhaps that's the same reaction I would have gotten from that other blogging mom.)

Anonymous, I'm delighted that you found your way here! I look forward to hearing more about you and Nathan. (Can I get you a cup of coffee?)

Anonymous said...

There have been many times when a friend has described something her infant is doing and I tell her that C did that exact same thing. In the moment, I'm thinking how funny it is that our children do/have done the same cute gesture/movement/etc. Then I immediately fear and wonder if my friend is thinking, "Oh, but I don't want my son to be like yours." It's an awful feeling and I can only hope my fear is not true.

Karen Putz said...

I enjoyed this post-- thanks for sharing!

Imperfect Christian said...

Wow, very powerful words. It's amazing how us moms with children with like disabilities found so much of ourselves in one another, yet it is our differences that teach us the most!

Another Autism Mom said...

MOM-NOS, I can relate to this conflict within... Many times when I'm around other parents of NT kids, I'm afraid that they'll consider my advice/experience "not valid". But then I think again and realize it's just my self-censorship; those people do not consider me so different, and they welcome me and my child as if we were all the same. Actually they do not want me to feel different or excluded, because that is not the way they look at us. There are nice people and nice friends in this world.

My autistic son was a clingy child as well. What I would have told that mother if I had posted a comment is: I LOVED IT. It was a great bonding experience, and it wasn't that hard to go about my business, doing laundry, writing e-mails and even eating lunch holding him in one arm and hip. And there will come a time, sooner than later, when that baby will learn to be more mobile and independent, and explore his surroundings and having fun without needing Mom next to him.

Never That Easy said...

What a thoughtful and compelling post. It's amazing how we can get so caught up in the differences, we forget that the similarities are vital too.

Niksmom said...

Mom-NOS, have you been living inside my head today! That internal disablism is the very thing I wrote about, too! See, we are NOT alone at all!

Sidebar: In your scenarios, what would happen next in that discussion about Richard?
xo, Niksmom

Niksmom said...

For anonymous (AKA Nathan's Mom), Why don't you come on over and meet my Nik. He's a little over three and has autism, too. Maybe he and Nathan can play together! ;-) YOU ARE NOT ALONE! And, yes, Mom-NOS's living room is wonderfully welcoming and soothing. I love it here.

Mary P Jones (MPJ) said...

You are not alone! Yesterday, I was reading a different blog about a child's picky eating and I shared about my son's resistant eating, and I have been agonizing and beating myself up about it every since. I had trouble sleeping last night -- over a comment on a blog! Augh!!

I worried --w ill she think I'm saying her son's picky eating is a sign of autism or is a disability itself -- or will she read my own blog post about picky eating and think that I don't take her problems seriously because my son's are so extreme and people don't take me seriously?

I am trying now to take a deep breath and remind myself of the love I hold for my son, strengths and weaknesses alike.

Thank you for sharing!

Special Needs Mama Prof said...

Wow. Thank you for this. That internal editor is a powerful one. You dramatize the tension so well.

mysamiam said...

Not to scare or concern anynone, that is how I have felt in the exact same situation. I have browsed other blogs similar to your second scenario and wanted to offer support, but was afraid they would come back to my blog and see the word autism. People have such fear of that. I want people to not fear it, but understand it. To not see it as a dark cloud, but perhaps clouds parting making way for a rainbow. Great post. Thanks for speaking up at your staff meeting. :)

Penny L. Richards said...

Yup, been there too--you describe the situation well--afraid to claim my own authority as a mother, because it comes with an asterisk in so many other minds. But not mine, so I usually say something anyway. Discount my advice, that's fine, but if you ask for help, I'm going to share whatever might be helpful.

Anonymous said...

Scenario One: Sometimes we over think things and all mothers over personalize. Our oldest son (NT) graduated from a private college last spring. He had various roommates throughout the years (I should mention that he LOVED college) some we met and some we did not happen to meet. He told me at Christmas about one of his roommates who had Tourette's Syndrome. "It was no big deal, he had a funny thing he did reacting to light" and OCD "No biggie, he always had a single room in our suites", etc. Our son stays in touch with tons of college buddies, male and female, (including that particular kid who he was in a chess club with) and I'd wager to say that the one kid he told me about was not the only kid there who was an individual with differences as well as similarities. Oh, we talked about him in the context of our son starting work in a school teaching in a class with kids with individual education plans. "No biggie, they're just kids" he tells us. So, to your young colleagues I say, don't over think it. Assign Richard a dorm room as all kids are assigned. Chances are he'll end up with a sweet but clueless kid like mine and nobody will ever notice any thing different.

Momof4 said...

I am "anonymous" that posted earlier about my son Nathan. I also have 3 other older children. Nevertheless, I feel like I am starting ALL over in my education being a mom.

Anyway, now I have a name to post under so that I don't feel like a stranger. What a great place to visit!

Carol said...

I'm in a rare position of being on lots of different sides of the fence. I've got an autistic son, twin girls (one with ADHDish symptoms) and another son who is developing normally. It's been my experience that moms who are looking for support and ideas will usually take it from where ever they can get it! Let's face it, we're all in this boat together, no matter what our particular circumstances. When I'm relating things that have worked for me I'll sometimes just preface it with something like, "I know my circumstances may be different from yours but I found this helpful when dealing with X." I think as moms of kids on the spectrum we've usually got more to give than most other parents because a lot of times the severity of our difficulties forces us to find practical solutions where others can sometimes get away with wingin' it.

Stimey said...

The second part of your post was very compelling. There are so many fears and stresses that come with motherhood and it's frustrating that sometimes when we try to help, those same fears and stresses keep us apart. No matter who your child is, we are all in this together. Kudos to you for being such a thoughtful person and mother.

Karianna said...

Very thought-provoking. Beautifully written. I've definitely found myself in situations just as you've described. And, I've read comments on my own blog with an interesting eye at times of which I am not proud!

It is hard to show compassion without condescension, assistance with respect, and praise without the unspoken qualifier.

kristina said...

I speak only for myself but if I were a new mom, a worried mom, I would love to hear from you. Your words always contain so much warmth and compassion and love, and all you write here about Bud and your love are the stories everyone needs to hear. Everyone!

Beth Allums said...

You have done so much for me in the short time I have been reading. You are witty and brilliant and though I don't know you, you are my friend in cyberspace, and I can't thank you enough for sharing. I look forward to many peaceful moments when I can read about you and what wonderful insights you have.
I can so relate to so much of what you write, but this really strikes a cord today. I wonder how much of my own fears are projected, with so many of my friends seem to have completely stopped inviting us on playdates. Is it me or them? I just don't know anymore.
Like today, we're at Wal Mart and I feel like telling the cashier he is Austic, so she'll stop eyeballing me as she is looking at my melting down son who is finished with the trip and heading for the door while I try to redirect his attention so I can get finished checking out. What am I doing? Am I creating a divide between the "normal" world and our own "normal"? I feel so divided myself.
I'm still figuring it all out, but thanks for letting us know we're not the only ones.

Philip. said...

A well written blog!

Very interesting.

KAL said...

I do this all the time when talking with my girlfriends about our kids (well their NT ones, and my autistic ones). I will say "oh John did/does that" and see the faintest look of worry pass their faces. And I feel BAD about it. But there are universal mothering truths and experiences and they're not all indicative of anything other than a shared moment. Wish I could hold on to this realization instead of self-censoring. I will, without a doubt, think twice the next time! Thanks for a great post.

Anonymous said...

This is my very first ever post. This topic brought me back to memories that are so engrained that I could not resist. I think I have the courage to press "publish" but we'll see.

When my son was born, we lived in an apartment building without any children. Finally a family moved in with a child the same age who also loved the Teletubbies. We became fast friends, had play dates, and went to playgrounds with our kids. I noticed my son never played with her son or the other kids. He ran into the kids swinging, and playing, or ran around the perimeter of the fence. We seemed to always end our visits with me carrying away a tantrumming child and attributing it to his missing a nap.

We moved away and we tried play dates at our new house. They came over, my son ran the perimeter of our fenced in back yard, or sat alone in the sandbox watching the sand go through his fingers. And her son was very clingy and would stay by his mom's side. We would go in for lunch and my son would get on my lap and instantly go to sleep. The other mom told me how jealous she was that my son cuddled with me. She said she had to ask her son and then it was only for a moment and he was off playing. I was jealous that her son looked like he really enjoyed being with her, talking, asking questions, and really engaged and interested in the world. Something I didn't see in my son.

Later on when my son was diagnosed, and I learned about CAPD, I remembered something about that family. They were a very verbal family and it was hard to get a word in, and they spoke two languages which they went back and forth with constantly. It was very hard for me to keep up with our/their conversations. In retrospect, I realized that my son most likely could not process anything coming from the two of them, got overloaded and eventually shut down. I recall his naps were very long when they left and I would have to wake him for dinner.

The play dates ended when my son went into tantrum mode when they arrived, her son clinged to her side, and I and left them alone to settle my son. Fortunately, our son was diagnosed early but I wish our pediatrician would have paid attention to the legitimate concerns like this and others (not talking, drinking only milk, stuffing bread into his mouth, chewing his pacifier nip off or putting it in his mouth backwards and chewing on the plastic, not sleeping, GI stuff, eye tracking, not wanting to be touched/held, not noticing people, etc.) we raised at the wellness appointments. I think that clingy little boy could have explained it to her, and in two languages.

Angie @ Many Little Blessings said...

Like someone else has already said, I found your section about the comments hit home because I was on a listserv for quite a while for Moms with kids with heart defects. My second son has a heart defect, but it was nowhere near what the defects of these other children were. So, I often felt like I had no business to even comment, since our situation was so much more mild than theirs. I finally said that, and it was funny that other people didn't feel that way at all -- it was just me making myself feel that way.

Oh -- and I also know what you are feeling about the similarities you have with mothers of NT kids. My son with Asperger's has a same aged friend who is also an Aspie. This boy's mother, who is a friend of mine, seems to attribute any undesirable behaviors to the Autism. I sometimes say, "Oh no -- plenty of other kids this age do that." But, unfortunately, she doesn't seem to believe me.

Hopefully you will venture out into the blogosphere some more! :)

(Oh -- and as a quick other note -- can I add that I loved hearing that Bud was the same kind of "sleeper" that our Noah was.)

Anonymous said...

I also feel the block you talk about when sharing parenting advice for something that worked. If it pertains to one of my NT kids, then all is well. If it pertains to my ASD child, I can sometimes feel people pull away, afraid that the next sentence out of my mouth will be that their child just might be autistic too.

neil said...

re scenario two, choosing an anonymous identity is an ideal thing if you want to help out...stress free advice.

Anonymous said...

Oh, that last part broke my heart. But I know exactly what you mean.

Cindy said...

Cyndy told me to come over and read this because it made her cry. So, now I am crying, too. I am the mom of four boys. Three are normal active boys, and one is a normal active boy who has NLD with a side of Asperger's. I didn't blog about my NLD son for a long time- it was much easier to tell funny stories about the boys as a group or individual stories about the other three. Since coming out of that closet with a bang, I need to find people like you, so we can stop second-guessing ourselves. Overcoming the perceptions of others and of ourselves is so much more difficult than coming up with coping strategies for our children, I think. Hugs to you for writing this, and for being such a good mom.


Dadof6Autistickids said...

We're fairly new to the ASD world having gotten a DX on all 6 of our children this past November. We still have our grieving moments and why did this happen to us...to our children?

But I believe that we are here for each other. We may not always welcome unkind words or actions from others. Sometimes we feel like giving people a quick pop between in eyes to say, "hey you got 'normal' kids, be thankful!".

But again, we can give and take...learn and teach. If someone doesn't like your comments right now, they may later. But it will likely cause them to pause, if just a little.

We need to throw off the constraints of being PC. If we stub someones toe a bit...that's OK. We'll stretch a little by spilling our guts for all to see and they'll expand their learning from our efforts.

I hope this all makes some sense to you and not just myself. Lets all learn and grow with each other and hit that publish key!

Anonymous said...

your words of wisdom and support would always be felt as such, MOM-NOS. thanks so much for this.

Anonymous said...

Oh MOM-NOS, I wish I had read this yesterday, when I was down in the dumps about my Lola. That pesky internal disablism, my tendency to extrapolate and imagine every current molehill as a future mountain... Lola is not so different from her peers now at age 3 - a little shy, and certainly speech delayed. But how will she be at 7? At 12? Is college a possibility, and if it is, will she be like Richard?

Ever since Lola's diagnosis, I feel like everything about her personality is being defined by autism, separated into 2 categories: autistic traits or non-autistic traits. This is not how I think of her, but how I feel others are perceiving her. All of those gorgeous personality traits I know and love (many of which she shares with her NT brother, BTW - and yes, he really is NT), get labeled in terms of pathology. Her active curiosity about her environment = proprioreceptive issues. Her reserved nature around strangers and people she doesn't "click" with = pervasive social delays. The adorable way she rubs our ears when she's tired or in need of comfort = tactile stim. Argh! It's no wonder that we second-guess our ability to relate to the parents of NT kids. Will they see Lola through the story, or just the autism?

I self-edit all the time, online and in the real world. Will this new neighbor with the 3-yr old little girl still think we have so much in common once she finds out about Lola's diagnosis? I hate thinking this way, because I know that there has got to be a little psychological projection on my part. Am I the one discounting Lola, am I the one judging her? Sigh. Heavy thoughts for so late at night, but as always, thanks for making me think.

GClef1970 said...

Oh my goodness, I have done the same thing. Yes, there are things that are specific only to our children. Unfortunately, most people (including us) forget that a child is a child, first and foremost. They tantrum, have picky eating habits, obsessions over toys or characters, come out with odd sayings.
I recently loaned an autism-related book to a dear friend simply because it just had great think-outside-the-box parenting ideas. I fretted over what her husband would say and if he would think that I was implying that one of their 3 was on the spectrum.

Anonymous said...

Excellent post. I read myself within your words. Frequently I post on regular mom blogs or post responses on a forum to offer advice, support. But then I think I may be putting fear into the mother's heart because she may read my blog, discover my special boys, and begin to have fears and anxieties when in reality her child is NT.

Thank you.

Anonymous said...

Thoughtful post. I was at the park with my 3 auties today. I saw a toddler walk away from her Mom. Mom called "Jennifer! Jennifer!" and child kept walking, didn't turn toward her Mom, didn't stop until Mom ran up to her. My autism alarm bells went off - "Uh oh! Child doesn't turn to name and stop." Do you find your autie radar is on hyperdrive or am I unusual since I have 3 (or for a zillion other reasons all of which you are too polite to mention!) :)

Jordan said...

This is a beautiful post. Both parts are so compelling. First, the story of Richard. I am just finishing the beautiful book "Mozart and the Whale" about the relationship and marriage of two adults with Aspergers; what your colleagues were describing in Richard rang so true to what these two adults described about themselves; the pain of their (undiagnosed) childhoods, challenges in college and beyond. As a therapist myself it very strongly reinforced all that we try to work on with children on the spectrum in an attempt to circumvent some of these later obstacles. And how lucky the authors would have been to have you for a parent. But then the second half: how sobering. I can see where it comes from, that decision to delete your comment. It would be a better world for children if parents of NT children weren't scared of disabilities and could learn from the wisdom of mothers like you.

Anonymous said...

I worked as a paraprofessional in sp ed before I had kids...now I have a 6 year old son on the spectrum and a NT 3 year old son. I also happen to have a best friend who is a special ed teacher. She and I both agree that some of best parenting advice (and schooling advice) comes from what we've both learned in special ed. These worlds to intersect quite frequently.

That said, I completely understand your feelings. Sometimes I'll have a friend who is worried about something her son is doing (or not doing) and I'll want to chime in (and sometimes I do!) that my Petey did this or that and he's fine! Because in my eyes, he is just fine, you know. But I also realize that others might not enjoy my comparisons.

I think all moms in general need to stick together better. Thanks, as always, for your wonderful insight.

Karen in CA