LIFE IS A SPECTRUM
Billy, what are you doing?!
I'm pinching Willow's head!
Billy, WHAT are you doing?!
I feed the TV a sandwich!
Billy, WHAT ARE YOU DOING?!
I'M WASHING THE TOILET PAPER!!
Ask a stupid question ... get an honest answer. That's one of the few “upsides” of autism: honesty.
There are others. My fellow autism parent/blogger Big Daddy has written about the fact that his 13-year-old son will still happily show affection and hold his hand while walking down the street. Other parents have mentioned the imperviousness to peer pressure and the dedication to subjects about which they feel passionate.
Where Billy is concerned we can also count an amazing memory, perfect pitch, perfect rhythm, and a scary-good sense of balance among his strengths; whether they can all be attributed to autism is impossible to say. After all, whether or not he was autistic, he might have still been a good singer, a good gymnast, or a spelling bee champ. But autism has impressed its indelible stamp on my son, so each of his favorite activities are enjoyed in a slightly different way because of his beautiful, unique brain.
I'm in no way, of course, trying to minimize the downsides, the challenges, the often heartbreaking difficulties faced by autistic people. But those are the things that usually get the press and attention, so I thought I'd mention, ever so quickly, a few positive things. And honesty is one of them.
By contrast, my two-year-old daughter is already discovering her inner sociopath. She can lie till the cows come home.
Lately, she and Billy have been physically fighting like cats and dogs. Usually over toys. And he'll come running, screaming from the other room, with her literally nipping at his heels like some kind of rabid badger. “No pinching! No pinching!” he screams as he tries to keep his Lightning McQueen car out of her grasp.
One morning, I sat them both down on the bed and ordered them to watch TV quietly while I finished getting ready in my bathroom. Poking my head back out of the bathroom a few moments later, I caught Willow, with her fingers in pre-pinch mode, ready to strike at Billy any second.
Her eyes met mine. Her hand froze. Then she wiggled her little fingers in the air. “I tickle, Mama.” Yeah, sure you do. Sure you do.
Because I now know how things look when they don't develop normally, I've come to appreciate, believe it or not, this deviousness in my daughter. I'll never have to worry whether she will wear all her feelings and thoughts openly on her face, making her a target for the con artists and bullies in the world. I'll never have to wonder whether she can understand the concept of lying at all and have to explain to her one day that everyone doesn't always tell her the truth.
Of course, I hope this tendency to fib is something she grows out of for the most part as she gets a little older – or at the very least, uses sparingly.
Maybe her brother will have a good influence on her.
Happy Autism Awareness Month!
Merry Autism Awareness Month?
Be AWARE!
Beware ...?
Whether you're "lighting it up blue," sporting ribbon magnets on your car, or are feeling kinda Grinchy about the whole thing, as I was this time last year, your perspective on Autism Awareness Month is appreciated and welcome here. If we're truly going to be "aware," we need to be honest. And my "awareness," I'll admit, has been an ongoing journey.
Last summer, I wrote a post called "Loving Lampposts, Curing Autism and the Dark Night of the Soul." It has been suggested by people who love me that I made myself sound crazier than usual in this post. I countered with the fact that it was in no way unusual.
Anyway, shortly after I wrote the piece, including my heartfelt wish that Tallahassee would soon screen the film Loving Lampposts, I got an email from the filmmaker. Todd Drezner, father of an autistic son about the same age as Billy, wrote to just say "Thanks" for mentioning the film. And he said he'd keep me posted if the film made its way Southeast. What a mensch.
Flash forward to Autism Awareness Month 2011 and guess what: Local screening of the now award-wining "Loving Lampposts: Living Autistic!" If you're local, details (date/time/place) are in the sidebar at the right. If you aren't local (or even if you are and can't be asked to attempt campus parking), you can now order the award-winning film on DVD (click on the banner ad above).
"Loving Lampposts: Living Autistic" follows Todd's journey as a parent from diagnosis of his son's autism to acceptance and beyond. He poses the question, "Is autism a sickness or simply another way of being and thinking?"
He introduces the audience to the recovery movement: those who think of autism as a disease that needs to be cured. Among their most notable advocates is celebrity Jenny McCarthy, a proponent of the anti-vaccine movement.
And he speaks to advocates in the neurodiversity movement: those who believe autism is simply another way of thinking and being. They promote the importance of support for and acceptance of autistic people. Speaking for this camp are scientists and autistic adults like the brilliant Dora Raymaker, working on her graduate degree in Portland, as well as Stephen Shore, a professor at Adelphi University. As an autistic child, Stephen was recommended for institutionalization. Now he teaches music to autistic children and lectures around the world.
I'm not giving away any more of the details of this moving film, but I highly encourage you to see it. As a parent of an autistic child, I believe the message of this film is important: The more we can do to introduce the world to real autistic people, the better prepared it will be to embrace and support their unique brains.
And now, because no holiday would be complete without presents ....
PRIZE! PRIZE! GIVEAWAY! FREE! FREE! PRIZE! ENTER! PRIZE! GIVEAWAY! FREEBIE! SOMETHING FOR NOTHING! FREE! FREE! PRIZE! PRIZE!
I'm going to give away a copy of the "Loving Lampposts: Living Autistic" DVD to one randomly selected reader. To enter the giveaway, here's all you have to do:
- "Like" LifeIsASpectrum.com on Facebook. That's easy: The button is right there at the top right-hand corner of the page.
- Post a message -- ANYTHING -- about autism awareness on our Facebook page. It can be a personal experience with autism. It can be an urging to "Light it up blue," or it can even be a "Happy Autism Awareness Month" song you've written. You can even write, simply, "I'm aware."
Post a comment on this blog after you've completed these steps, so that we can give you credit for them. That's all you have to do to enter.
BUT ... while not required to enter, you can get one ADDITIONAL entry into the competition for doing EACH of the following:
- "Like" Loving Lampposts on Facebook.
- Follow LifeIsASpectrum on Twitter. (Again, you can just click the Twitter button in the top-right corner of this screen.)
- "Like" sponsor Pea Green Solutions on Facebook.
- Follow sponsor Florida Commerce Credit Union on Twitter.
Again, post a comment here to let us know that you've completed any of these extra entries.
The winner will be announced on Friday, April 15, 2011. If local, that person will also receive reserved seating at our Tallahassee screening of the the film, along with their family.
I want to say thanks to a few people who helped make this screening happen:
Todd: I can't wait to see your next film, after seeing the thoughtful, honest and beautiful way you addressed our community and posed some very controversial questions.
My sister, Sam Strickland, CEO of Pea Green Solutions: Without your social network (and I mean that in the old-school "I have to actual KNOW people" kind of way) I'd simply be some nerd with a website ... whose son would be going to a school half an hour away.
Florida Commerce Credit Union: Board member J.R. Phelps spearheaded the sponsorship of this screening, and we couldn't have done it without him and them. FCCU is more than a financial institution; it's a community leader in Tallahassee. (And I'm not saying that just because I have two mortgages there ... wait, make that THREE mortgages.)
The Florida State University College of Motion Picture Arts is the best-kept secret in Florida. No, make that the COUNTRY. Seriously, this is one awesome film school, and I would go on and on about its phenomenal alumni and dude of a Dean, but you should really just enroll and find out for yourself.
And the CARD Center. Where do I even begin in thanking CARD (Center for Autism and Related Disorders)? From the moment we started suspecting a "problem" to our most recent IEP meeting, the CARD Center has been literally at my right hand. I always feel like I have an advocate, that Billy has an advocate, whether we're facing an autism diagnosis or the equally daunting challenge of potty training. CARD's commitment to the family dealing with autism is the reason we chose their Autism Foundation as the beneficiary of this fundraiser.
Everyone donating $25 or more to CARD's Autism Foundation will receive a copy of the DVD of "Loving Lampposts: Living Autistic." If you're local, we hope to see you there. If you aren't local and can't find a screening near you, click the banner ad at the top of this page and you can order your own copy of this inspiring and hopeful film.
Like you on FB
I have posted MANY comments on FB about Autism Awareness, including one about this film.
Like Loving Lamppost on FB
Follow you on Twitter @ASDsupportNC
I liked Life is a Spectrum on FB and left you a comment :)
I liked Loving Lampposts on FB
And I already follow you on twitter @heatherlisa82
Would have done these things without prize incentive
I would have done these without the prize incentive :-P Like (love) your Life is a Spectrum FB page, Like Loving Lampposts, and now following LifeIsASpectrum on twitter.
Happily did all of the liking and following! Looking forward to checking out Loving Lampposts at the screening no matter who the random selector picks. =)
Liked the Facebook page!
Hugs,
Wendy
Happily did all of the liking and following! Looking forward to checking out Loving Lampposts at the screening no matter who the random selector <a href="http://www.sbobet365.com">sbo</a>
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Total 11 comments
“What a difference a year makes.”
I've said those words a lot lately. Mostly, of course, I've been referring to Billy's phenomenal progress. Since this time last year we've had the following breakthroughs: total potty training, asking all kinds of questions, reading (sight words and sounding out), riding a tricycle, awesome holidays (his birthday, Halloween, Thanksgiving, Christmas – all thumbs up!) ... the list goes on an on.
But I've changed too.
About a year ago, I called myself The Grinch Who Stole Autism Awareness. Because that's how I felt. You can read the words of cranky, Grinchy 2010 me, if you want. I'm still cranky and Grinchy about a lot of things. But this year I'm on board with Autism Awareness.
Why? Let me count the reasons ...
Reasons I am on board with Autism Awareness Month 2011 (also known as "April")
Because autism in our house looks different than autism in other people's homes and as reflected in the brains of other children and adults, and if I don't share our perspective, I can blame the people in the world who think autism just looks like this:
Also, with budgets getting slashed left and right, the most vocal group – the one of which the most politicians are “aware” (aware=scared will show up at their office with an army of autistic protesters) -- is least likely to be forgotten when funding is being doled out.
There are plenty of parents still unable to afford therapy for their children, and there are autistic adults unable to find the supports in their community that they need to live as independently as possible. Awareness helps connect people with the services, supports and programs that exist and helps identify the gaps in he community that we still need to fill.
So with that in mind, we have quite a few plans for Autism Awareness Month this year. In fact, there's so much going on in the Broadfeet household that you'd think this Grinch had discovered a whole new holiday season.
We're planning a local screening of the wonderful pro-neurodiversity film Loving Lampposts scheduled here in Tallahassee, a screening that will raise money for the Autism Foundation of the Center for Autism and Related Disabilities. This foundation directly serves families in our region dealing with autism, from childhood through adulthood. I'll have more on the filmmaker and this remarkable film at the end of March.
I'm sponsoring a "Life Is A Spectrum" art competition at Billy's elementary school, from which we'll be creating a special autism awareness postcard. The winner will also receive a cash prize and four tickets to Disney. It's our way of turning a bullying experience into a positive message about autism!
We also have some special autism-awareness-themed giveaways planned, including some designed for parents, some for kids and one special prize for other bloggers out there who will help us spread the word. And from now through the end of April, I'm going to highlight awareness events in the sidebar of the blog here, so if your community or organization has one planned, send me a message, because I'd love to share your hard work with everyone here.
More information on our stuff is coming very soon, I promise, but I would like to go ahead and encourage you to get involved with your autism community this April. If you can join a walk, make a financial contribution to a cause, share information or, best yet, donate your babysitting time to the parents of an autistic child, your “donation” will be appreciated by all of us.
Congratulations on the progress, for you and your son! We're still new to all of this, and I'm more on the grinch side at the moment... But it sounds like you're doing some really great things, especially the art contest at school! Good luck!
Amanda, this is soooo amazing! I'm excited to hear about all of this!! Way to go :)
Whew
I'm exhausted just reading about what you have planned. Impressed too. But mainly exhausted.
You go
Your Grinchy heart has grown 10 times plus two! You go! And go and go and go! Big Daddy and I will be right here cheering you on from our Barcaloungers.
How Wonderful!
Billy's progress this past year is really wonderful! You're involvement in getting the word out is also really great! That's been a struggle for me. Other than my blog, I don't really do much publicly. I don't participate in walks or fundraising. I think when the time comes to come clean with my daughter is when my public involvement will take off!
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I think "the cause" is lucky to have you as such a vocal supporter, Amanda! I'm pleased that you've chosen to share your family's story with us...I've learned a lot from you!
Hugs,
Wendy
Brava!
Brava, Amanda. I'm very proud of you. I'd love to feature you on 36x37 in April for Autism Awareness if you have time and think you'd be interested. Let me know...
Proud of you
So proud of you
you and I are on the same journey
Grinchy grinch heart no more!
Wow! I am soooooo impressed with the Disney tix giveaway. We r on our way back from Disney now and I was just telling my family your story. Good karma is coming to you someday my friend.
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Total 12 comments
Sometimes autism looks like this.
Over a year ago, I was sitting in the lobby of one of Billy's therapies when a well-meaning grandmother of another child remarked about Billy, “He's such a beautiful child. It must make it easier that he doesn't look disabled.”
At the time that she said that, Billy had his nose stuck down into the fake potting soil of the fake house plant in the lobby and was singing something to the plastic tree. I don't know what that looked like to her, but that's what autism looks like in our house.
But I get her point. Those of us with loved ones on the spectrum develop a finely tuned “A-dar,” as we call our ability to identify other kids on the spectrum. But I'll grant you that, especially these days, there are a lot of times when we are out in public when I suppose Billy can “pass” as “normal,” if that's how you want to look at it.
And sometimes, particularly after an exhausting day, it looks a bit like this.
And that used to be important to me. Not so much any more.
Very early on, it would embarrass me when Billy would crawl under the table of the booth at Beef O'Brady's and want to eat his grilled cheese there.
But eventually, I figured out that he likes sitting flush with the glass wall, his cheek pressed against the glass while he watches the lights of the cars in the parking lot. When I finally got down there with him and looked at it from his perspective, I thought, “You know, it is kind of beautiful.”
Also, I've had the opportunity to explain to the wait staff at the restaurant that he is autistic and why he likes to sit down there. At first, they were surprised to find out he's ASD. Then, they sort of shrugged and rolled with it. They always remember his favorite meal, give him a bright smile and never raise an eyebrow when he disappears under the table with his cheese sandwich.
Sometimes it looks like this.
There are times when I wish we had a sign. For instance, when there's a meltdown in a public place, I'd like a sign that reads, “Sensory overload in progress: Please don't touch me or talk to me.” And that would just be the sign that I wore.
In those instances, there are always a few people casting scowling glances, as though the problem is just one of discipline. Those are usually the same people that wish human beings would just spring from the womb already aged 30-ish, so that their dinners/shopping experiences/serenity are never interrupted by the sound of childish squeals.
Some people just stare. Maybe they want to help. Maybe they feel like they should do something. (FYI, if you meet me in the middle of a Billy meltdown, I'd appreciate it if you'd catch him if he runs toward you; otherwise, feel free to go about your day and ignore us completely.)
Autism looks like this less and less these days.
Thankfully, meltdowns are few and far between these days. We go out to eat as a family, take Billy to the grocery store, to Disney World, to the beach. Sure, we hit a few speed bumps along the way, but in most instances, our perspective has changed from “How can we make Billy more 'normal?'” to “How can we support him to succeed in a world that really isn't set up for autistic people?”
Is it easier for us because Billy doesn't exhibit a profound physical sign of his special need, as a child in a wheelchair or with Down's Syndrome does? I don't know. I haven't been the parent of a child with those challenges. I can only guess that there are days when, like me, they think every other parent has it easier. But even on those days, I'll bet when they look at their child, they know that they've never seen anything more beautiful.
What autism looks like is really immaterial. What's more important to me is what Billy sees when he looks at the rest of the world. Because from where I'm sitting, looking at him right now, things are looking pretty good.
What autism looks like
Amen. It doesn't matter what it looks like. Although, I have to admit, because it isn't obvious sometimes it makes it harder, you know?
I agree a MILLION times over. My mom tells me all the time she knows what autism looks like and she works with kids who have autism all the time. She has had one kid with Asperger's in her class a few years ago and that makes her qualified to tell me that our Chris is just spoiled and our Matthew should be spanked for having accidents at 5 years old. Autism looks different for everyone.
It Gets Even Easier
In my experience, being out in public gets easier and easier. Not only because Griffin continues to make progress, but also because, as time goes on, we care less and less what other people think. I mock the stares I get when my 13 year old is melting down because we told he won't be riging on the Macy's elevator today. It's not my fault, or problem, that there are close minded, judgmental people out there. That's their problem.
I agree with The Domestic Goddess about it feeling harder because it's not obvious. Simply because people don't understand as easily, and I've had a lot of well-meaning 'help' over the years.
I often think a public meltdown is like being a soldier in battle (against autism's worst behaviors, not the child), and to have an inexperienced or misguided person try to help is like some random person walking in and trying to offer suggestions - to both sides. On the one hand you have to stay focused on the task at hand, but on the other hand you feel a sense of responsibility to get the civilians to safety!
With a child that 'seems normal' I think more people feel like they know what to do and feel as though they can just jump in and help. Of course, I don't know what it's like to have a child with a visible disability, but I'm sure they have their own unique challenges.
Thanks for the entry - it's a good reminder that life really does give us a little of everything!
A-dar, I love it
I've definitely developed pretty good a-dar. The kid walking on their toes, holding hands and fingers a little outstretched, talking to themselves (of course with Bluetooth cell phone mics I get that wrong more often these days :-)), different speech patterns...it goes on. I think that's why I get surprised when people say my son doesn't look autistic, or more often they just assume he's acting out as opposed to doing what he needs to do to express himself or get by in an overwhelming world.
I used to hate the pictures where he was so obviously autistic - usually when he's so excited that he raises on his toes and throws his hands out and flaps. Now I love those pictures - he's so genuine, the joy just shoots out of the paper at you. Of course, as with everything autism, your experience may vary based on levels and function. I'm not sure it's "easier", but it's real and honest and I love him so.
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This is so profound
"but in most instances, our perspective has changed from “How can we make Billy more 'normal?'” to “How can we support him to succeed in a world that really isn't set up for autistic people?”
Thank you for linking my post - its such an honor
Yes. My son does not 'look' like he has Aspergers. He also does not look like he's only 10 years which adds to people's misunderstanding him. Matt looks like he's 12- 15 years. He's 5'4" and 180 lbs. He's very gifted. But... he only really converses willingly and with animation on subjects of interest, like repairing/ rebuilding/ redesigning bicycles. Otherwise... well, Please don't bother him with inane drivel about other subjects. Although I have to admit he lets me babble on about whatever I am working on and says he likes to listen to me chatter!
Yes, he is absolutely gorgeous. No physical signs of the turmoil within.
Matthew lives in 'Matthewland", obviously an amazing place as he goes there often and returns refreshed and with new ideas for the rebuilding of something (usually bicycles). Sometimes I so wish he'd take me with him!!!
My husband and I have joked about getting our 4 year old a shirt that says something like, "I have autism". Of course we never would... but the judgmental stares used to hurt. I've become immune to the stares during her tantrums. Now I just feel badly for the well meaning people who come up to my cutie to say hi and experience her freak out instead of the expected smile.
Great article! That's how I feel about my boys, too. Sometimes, when I know that we'll be in a stressful situation in public, like going on a plane, I'll put my sons in their Autism Awareness t-shirts, just as a clue to people who might wonder about their behavior or our methods to forestall any meltdowns. BTW, your Billy is adorable!
Regarding Marissa's comments, I am so sorry that your Mom isn't getting it, and very worried about the kids in her class. If those are her views on autism and discipline as a grandparent, I'm concerned about how she treats her students.
You make me think by this post about overcoming obstacles, discrimination, prejudice and beauty. I want to focus on the beauty today. Billy is a beautiful child. Thanks for sharing this Amanda.
What does autism look like?
Beautiful post! You have it so right.
My son has Aspergers. I have often thought that it may be easier if there was a physical sign that showed that he isn't just being bad. There is a reason he is doing what he does. It doesn't help that he is the height (or taller) than friends 12-15yrs old and he just turned 10. People who do not know him, instantly think that he is much older & being a big discipline problem when in reality he is having a somewhat low-key meltdown. I am sure; however, that there may be times when parents of kiddos with Downs think it would be easier to be a parent of an Aspie. No matter the diagnosis, we all need to stick together and advocate for all of our special ones. We are their cheerleaders. :)
Snippets 'N Stuff
I don't think any one thing is "easier". My son is blind and has some very physical abnormities, but when it gets right down to it, his autism is more challenging to me than anything else.
YES!
Oh Amanda!!! This is just perfectly said. I could have written it if I had your talent. I'm going to force everyone I know to read it immediately. Lucky Billy. Lucky you! Thanks, so much!
Things Are Looking Good Indeed!
A friend (who also has a child with HFA) and I once had a discussion. She felt we had challenges to deal with because our kids had to function in the "normie" world while children with more severe autism had it easier because they lived in a segregated world. She brought up the example of soccer. Our kids were able to play in regular leagues while kids with severe autism had to play with other kids like them. While I agree that there are some challenges with helping a child on the high end of the spectrum integrate with "normie" peers, I found it to be a bit offensive as a comparison! I'll take these challenges TYVM and be thankful I don't have to deal with a more "obvious" disability. Not because it's more obvious, but because the challenges are much greater! To me, there really is no comparison!
This is a good reminder to we "Good Samaritans" that maybe we should ask the parents before offering our assistance...
Hugs,
Wendy
Nice conversation, but I have to admit that every time I read something about "high functioning" I cringe. It really is a spectrum and I don't think it makes sense to come up with some arbitrary dividing line. What exactly does high functioning mean? If we're talking about verbal and non-verbal and limited words let’s say that. If we’re talking about kids that are in inclusive education (with or without an aide) or separate classrooms or in a separate school, let’s say that. If we're talking academic achievement or whatever, let's just say it directly.
My son has very limited verbal abilities. He reads and does math very well. He goes to a mainstream school in a regular classroom with a one-on-one aide. He gets some academics in a special education classroom. He receives a lot of support through Maryland's Autism Waiver because he (easily) meets the definition of institutional level of disability (more definition here http://survivingthesystem.blogspot.com/2010/07/autism-waiver.html). I refuse to label him as "low functioning" but I will say he is significantly affected by autism.
I don't want to sound cranky, I just feel like every mention of "high functioning" is exclusionary and pushes our community apart.
I am so enjoying the follow-up comments to this blog! Nice to not be alone out here. Nice to know others have children who are amazing in some areas, but way behind in others. Now as I think of my Matthew who put together my rotary mower (I was 'allowed' to hold the directions!) at seven years old, but at 10 years still has accidents, I have more hope. I always knew he'd be fine~ Matt will someday have the corner office w/ a private bath and a maid to clean that office daily! But the rough road from here to there was looking scary. Thanks for being out there!!!!
PS
The second blog I listed is my Aspie's blog! He loves comments.
Words matter
Thank you all so very much for your wonderful feedback. I love to read your personal experiences about how autism "looks" and how the people you encounter look at autism.
I wanted to chime in on the "high functioning" vs. "low functioning" discussion.
In general, I try to stay out of the debate over labels and word usage. For instance, it doesn't really matter to me whether people call my son an "autistic child" or a "child with autism," but I know that is an important issue to some people in the community.
However, the conversations about "functioning" do bug me.
I was discussing this with my BFF JD recently, and she summed up my opinions perfectly: "When you discuss 'functioning,'" she said, "You're assuming a knowledge of a child or person's potential -- a knowledge you can't possibly have."
And it's true. Both of our sons would be considered "high functioning" if you want to use those kinds of labels. But let's say, for instance, that Billy had received no intervention while he was nonverbal and no one ever taught him how to brush his teeth, put on his clothes, say "Hello."
He might very well have continued to be nonverbal. At the very least, he probably wouldn't be potty trained. And he would have been labeled "low functioning" at this point. People would have assumed things about his potential that were entirely untrue.
There was a point early on when I asked someone, "Will he ever talk?" and I was told, honestly, "There is no way to know."
But he talks. In fact, he talks a blue streak. He learns at an incredible rate.
And yet, there are some things -- things that would be considered much easier than the things he CAN do -- which are next-to-impossible for him.
He can tell you the name of every satellite that has ever orbited every planet in our solar system. But he can't describe his day very well at all.
Does that make the kid who can't name all the satellites "low functioning" in science by comparison?
I've said it before and I'll say it again: Billy is a kid, not a washing machine. His functionality is as unknown, variable and full of potential as any child's.
I know these are just words. But words matter. Imperceptibly at times, the words we choose actually change our thoughts.
So many assumptions have been made about our remarkable children for so many decades. If I could make one wish for Autism Awareness Month, it would be to ask the world to stop making assumptions, and instead, get to know the autistic people all around them.
Chills
I loved when you said "once you saw it in his perspective, it WAS beautiful". I think we all need to remember to do that with our children every now and then. :)
My Awesome Son Austin
I loved your article so much! I remember the eating under the table and the stares that we always got, and I remember wanting so much for other people to just stop judging my baby and see him for the amazing person he is. Austin doesn't hide under tables or chairs anymore and he doesn't have meltdowns like he used to, but he still gets the stares because people see him and they watch him flap or pace back and forth and talk to himself under his breath and think what is with that kid, but I see the most amazing young man, who is self sufficient and confident in who he is and who loves Him! My Austin is 14 years old now and everything you have said about Billy was so true for my Austin, and even though I know we have alot more obstacles to over come, I know and Austin knows that we will face them together. It is so comforting to know that we are not alone in our fight to try and educate society about the wonderful people our children are!
I don't know if I can say what autism looks like for sure, but I do know autism in our house wears the same adorable green PJs. We haven't been in the loop for too long, but I have noticed my A-dar is pretty darn reliable. What's weird to me is when I'm around grown-ups I've known forever and start thinking, "Man they have GOT to be on the spectrum somewhere."
I love it when we find restaurants that are patient and understanding. That definitely makes me want to add Beef's to our list of kid-friendly choices. We recently went to the Hunt Club Subs and Grill. It wasn't crowded, kids ate free (Monday), they had basketball and fooseball games for free and an electric (no heat) fireplace that kept the kids entertained. They were very welcoming. It was great!
Our kids are constantly beautiful but I'm still glad that we are seeing less of the demeanor in the last picture and more of the first! Sounds like Billy is doing awesome! Is it me or is he your doppelganger?
Wonderful, Amanda. I'm sure you spoke for thousands of grateful parents today. Hugs to you, friend.
Wonderful, Amanda. I'm sure you spoke for thousands of grateful parents today. Hugs to you, friend.
Hunt Club Subs and Grill
@Ashley--Just wanted to tell you that the owners of Hunt Club Subs and Grill are our next door neighbors; a nicer, more compassionate and welcoming group of people you could not find in north TLH. We have been to Beef's in Midtown and Killearn and they have always been outstanding in terms of not freaking out when E insists on emptying the sugar packets on the table in order to sort and count them all.
face on the glass
Love the way you capture his heart and the wonder of that moment when you see the world through his eyes (or, rather, through the glass up against which your face is pressed!). It makes the crazy worth it when we "get" our kids. Love how much you do with your little man.
I get the "Oh, he looks so normal!" comment a lot. And now that M is becoming increasingly verbal, I get "oh, he can't be autistic, listen to him talk!" Like you, I don't really care that he can "pass," or whatever you want to call it, partially because it makes it so much more difficult for him, or us, to be taken seriously. All I want is for him to get whatever it is he needs to be able to function and grow.
Total 27 comments
Sadly, the train broke down halfway around the baseball field.
This past Saturday was the Bash and Dash at Billy's school, the annual fundraiser for the school. (Let's save for another day discussion of the topic of WHY a public school finds itself in a position of having to hold multiple fundraisers.)
Bash and Dash was great: well-organized, fun, and amazingly well-attended. There were pony rides and train rides and bounce houses and carnival games. That's the "Bash" part of the day.
But we started with the "Dash." There was a race for each age group, including pre-Kindergarten, Billy's group.
We had been practicing "racing" for weeks. I'd shout, "Ready, set, GO!" in the back yard and we'd run from one fence to the other. During his ABA therapy, Billy would race Ms. Elyse, I would race Billy; sometimes Ms. Elyse and I would race each other. We talked non-stop about the race.
I still wasn't sure how it was going to work out. Despite all our rehearsal, whenever he hears "Go!" Billy is just as likely to run towards the closest available toy as he is to run towards the finish line. As usual, I debated with myself: about whether introducing him to the idea of competition at this stage was even healthy; about whether the crowds would upset him; about whether he might actually fall and get hurt.
I was ready to pull out of the whole thing. Then I got a package in the mail.
When I opened it, I pulled out a trophy. It was about 18 inches tall and engraved like this:
My mom and dad.
I called them, and sure enough, my mom owned up. "I wanted Billy to know," she said, "that no matter what, he's a winner."
And she was right. Plus, I couldn't back out now that they had invested in what Billy lovingly referred to as "The Statue of Liberty."
Race day dawned bright and beautiful, and we arrived at the starting line with several minutes to spare. Several of Billy's friends turned up, including one beautiful girl who marched right up to him and grabbed his hand in hers, as though she sensed he needed a little reassurance.
As we had practiced, Dave stood with Billy at the starting line, and Willow and I went to the finish. When a volunteer tried to move me out of the way, I explained that my autistic son was planning to run toward me, and if I wasn't standing there, he was very likely to head for that little circle of unattended ponies (the pony rides hadn't started yet). I was allowed to stay.
The boys lined up (girls raced separately). When their little legs started pumping, I couldn't believe how excited I was. I was screaming and crying and shouting for Billy.
Even from a distance, I could see he was beaming with happiness. He was looking from side to side at the crowds lining the race path. Crowds. That was something we hadn't worked into rehearsal.
Billy's in the red shirt!
Rather than run flat-out, he kind of loped along, half-galloping, watching the other kids run in front of him. He likes to chase.
They all crossed the finish line in front of him and I could see Billy laughing with joy. He was happy for them. And he was inches from the finish line.
And then he turned around and headed the other direction.
He was out there on his own, the race was over for everyone else, and he was running the wrong way. I started shouting for him: "Billy, this way! Come this way, baby!"
At that moment, I just wanted him to finish. The other racers in his group were already getting their trophies and medals, and the older kids were already lining up for the next race, but I so wanted Billy to cross that finish line.
No one raised an eyebrow when Billy got the biggest trophy.
Then something beautiful happened. Everyone started joining in. On both sides of the race path, kids and adults were shouting, "Come on, Billy! This way!" And waving him toward the finish line.
Laughing, he turned around. He saw me and Willow. And he started running toward us. As he crossed the finish line and leaped into my arms, there were cheers all around us.
Of course, everyone was proud of the kids who ran the fastest. I would never want to take away from their winning moments.
But at the moment Billy crossed that finish line, we all felt like winners.
Wonderful!
I needed to read this today! Wonderful story!! Let's race during spring break!
I truly teared up at this post. Beautifully written, Amanda. It sounds like Billy is being raised in a wonderful community.
Your parents' trophy gift has to be one of the most thoughtful, insightful gifts I've ever seen. Kudos to them and to you for the love and confidence you share with your beautiful boy.
I confess I teared up too. There are powerful lessons in this story. I like how you let them speak for themselves. So cool how you took a risk and won - talk about modeling for your children! Great pictures too. He's a beautiful child. Could he be loved more? I don't think so.
Wonderful
What a lovely and genuinely delightful post. I'm sorry we didn't see you there and that we missed Billy crossing the finish line!
Fast-twitch vs. slow-twitch fibers
I think Billy realized that he's more of a long-distance runner versus a sprinter, and this was his way of saying "let's see how many of you can turn around and keep on running!". :-) Check under his bed for a copy of "the tortoise and the hare", I'm sure that's where he got the inspiration!
Hooray!
Hooray for Billy! And hooray that, if only for a moment, everyone else got it, too!
Yay for Billy! And everyone that cheered him on! This is a great story about never giving up and receiving an award that is much more than a trophy (but the one from your parents is especially nice)! Thanks for sharing such a wonderful day.
Mandy, I love all your articles, but this one especially touched me today! You are such a special mommy and Billty is such an exceptional little boy. *I'm so glad he "won" - I n our eyes he is a winner every day. God gives special children to special people - I truly believe this.
Awesom
Awesome from so many perspectives. Hooray for Billy's grandparents. And the other kids in his class. Most of all, hooray for him.
Snippets 'N Stuff
I LOVE this! He has awesome grandparents, doesn't he!? :)
I reposted this on Facebook, and this was my Aunt Connie's comment:
"Wendy, I read this and cried. I, too, cheered this little guy to the finish line. Your friend writes beautifully. You do, too. I love you. Thank you for sharing."
Wendy
Go Billy!
I loved this! Definitely tearing at the end, and so happy he crossed that finish line with the support of a whole community behind him. And what awesome grandparents he has to think of that trophy.
Amanda, I wanted to tell you all a whole buncha lovely compliments, delightful insights, and inspiring poems ... But after I got through reading the 512 comments, my brain has been erased. Love your blog.
What a gift Billy's parents gave the community that race day. Your boy ran the race but you put your heart on the line.
Billy I suspect with go far.
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Total 15 comments
You asked for it, you sadistic people, and here it is: me unfiltered, unmade-up and un-flat-ironed ... Also, if you want to check out the blog post I mention in the vlog, that which inspired this great un-masking, read on:
Big Daddy Autism: Lynn's guest post
Sis
You look exactly the same, my beautiful Sis! Even on my high def iPhone 4! Great vlog, great message for us all. :)
Right On
Ack! Just kidding. You look great sans makeup and flat iron.
I agree with every single point you made. My son is not flying under any radars and he rarely passes for normal. Yet to call him a pariah is disgusting. To the contrary, he is a rock star in his school and everyone who meets him falls in love with him.
Great post Amanda.
Good stuff!
Very well put! And I think you look GREAT! :)
This is an amazingly powerful post. I not only really like you, I have HUGE respect for you. You've tweeted me among "people who make me think." Well, you are one of those people. And I'm better for the ways in which you make me think. Thank you.
You Look Beautiful, Dahling!
Amanda, you really look beautiful--even unfiltered! Not only do you LOOK beautiful, but your words are beautiful too!
This whole debate is so ridiculous to me. Some people choose to keep themselves anonymous, other don't. This is true for the blogging community at large too.
To each their own! Let each family decide what is right for them! It's nobody else's business!
Great vlog, as always!
Living without a mask
First of all, how much to you like that video still that YouTube chose as the screen shot?! Lovely, huh? They give you three choices and believe it or not, THAT was the best of the three!
Now thanks so very much for the support as went unmasked, at least temporarily. Learning to love who we really are became so much bigger an issue for me after I had kids -- even before I knew about Billy's autism. Suddenly, I was more aware of the negative things I said about myself, my weight, my looks. Once I had a daughter, it became even clearer to me that if I didn't get comfortable with myself, I couldn't expect my children to do any better.
I still prefer my mask. But if living undisguised is what it takes to make my children proud of themselves, I'll toss the makeup out permanently.
Luckily, I don't think it's going to come to that :-)
Love you all ...
You're Gorgeous!
Yeah, the still that sits there on your post until kingdom come is always the best part isn't it? HA! I love the way you tied this in with yesterday's little kerfuffle. You said this all far more eloquently than I did. You know the saying "if I'd have known you were coming I'd have baked a cake"? That's how I felt. "If I had known this was going to turn into a serious-as-a-heart-attack debate, I would have spent more than 5 minutes writing it (sssshhh...don't tell Big Daddy)." Now I can tell Ann "what Amanda said".
Thanks, as always, for all of your support...you always make me feel better about myself!
hey...
silly goose, you look GREAT without makeup! I'm with you on the name thing. I will always feel as if we have nothing to hide, but that's just me. I'm kind of an "open book" type person. I'm aware that may come back and bite me in the arsh someday though.
Thanks for bringing this stuff up in your vlog :)
Awesome post! I don't know what I'd do without bloggers being open and honest. When we first started feeling our way into the autism community, we didn't know anyone in "real life" that had walked that path. I honestly might have lost my marbles feeling so alone as we blindly walked through that door. I use nicknames in my blog but that's only 'cause I wanted the option to complain about extended family. HA! I so agree with you about learning to be comfortable with who we are. I've struggled with that and maybe it was Dr. Phil or Oprah, but someone pointed out how easily little girls (and boys, too) pick up on their mother's self-image, for better or worse. It was a scary thought. When it comes to my son's ASD, there's not going to be any hiding it from anyone. I want him to understand it and be proud of who he is. It would be nice if it was as casual as being right-handed or left-handed. It is what it is. And he's an amazing and wonderful kid who makes his mama proud.
Excellent
I love this Amanda. The message, the unmasked part, all of it. Perfectly put.
Total 10 comments
Slow-Poke-A-Hontas: So named for the speed with which she moves when we are trying to get anywhere quickly.
I took a vacation today. Nowhere fancy, and the stay wasn't long, but for about two hours, I took a vacation from special needs parenting.
At first, I didn't know where I was. I mean, I realized that I was at my daughter Willow's preschool for her first-ever Halloween celebration, but I missed the sign that said, “Now entering the Normal Parenting Zone. Please stop hovering.”
School volunteering is old hat. But I'm always there as “Billy's shadow.” I'm so used to running interference, making apologies, settling Billy down, explaining why he doesn't want a candy cane or anything yellow or pudding to eat, that it truly didn't hit me until 30 minutes into Willow's party that she is FINE.
And I felt then what I'm feeling a little of now: Disloyal. The disloyalty came after the overwhelming relief but it was there, surprisingly, under the surface.
I felt like I had defected to another country. In this country, parents don't keep their hands on their children at all times. They stand back against the wall with their cameras, smile at their kids' shenanigans and occasionally glance at their watches.
There were occasional tears or tantrums, but looking into the faces of the parents consoling those children with a slight upturn at the corner of their lips, I saw no sign of the panic of the special needs parent. No, these tears were normal. These tantrums age-appropriate. No one was darting scared, paranoid glances around the room, afraid to see judgment in the eyes of other adults.
Standing there among them, taking occasional snaps of my child participating in the singing and dancing, sitting with her class, eating her snacks and fighting briefly over grapes, I allowed myself to take a few deep breaths and let my heart rate decrease.
There it was. The guilt. I felt guilty that I was enjoying this party more than I had ever enjoyed Billy's school parties. Not that I don't enjoy hanging out with my son – far from it. But school parties are rarely fun for him or us. Crowds of new people, an upset in schedule, weird food, a strange set-up to the room – it can spell disaster.
I felt guilty not just for Billy's sake, but on behalf of all my friends in the special needs parenting community who would never have this experience. I don't think for a moment that they're looking at my normally developing child longingly (particularly when I have two screamers at once). But this morning I felt like I needed to call each of them up and describe the sights and sounds of this whole new world, the way you might describe your first view of the Eiffel Tower or the first time you see a McDonald's menu written in French.
Like it or not, I'm a special needs parent who happened to then have a normally developing daughter. Billy made me a parent. He molded my parenting style years before Willow completed our family circle. He taught me to be a better person and showed me that I'm stronger than I believed possible.
Because the demands of parenting my autistic child are so great, Willow rarely gets the undivided attention of either of her parents. She tags along to Billy's school parties, his therapy, most of his play dates, and they do Kindermusik together. And she loves it. There is nothing in the world she adores more than her big brother, her “Bee-dah.” But today, it was just the two of us, hanging out in Normal-town and site-seeing together. Because growing up with her unique brother means that she's just a stranger in this un-strange land too.
We haven't emigrated. At 2:30 this afternoon Willow and I will pick Billy and head to his group therapy. She will squeal with delight at the sight of him. And he will watch the videos from her Fall Festival party, with equal delight, over and over and over again.
For a couple of hours this Halloween, ever so briefly, I dressed up in the guise of Normal Parent. It was fun to wear a costume for a little while. But I know that it's not me.
:)
Saw you and Willow on my way upstairs to bible study...what fun! =) Glad you got to have a normal moment...very sweet...
What a sweet little pochahontas costume! She looks like she's having a blast =)
Dual Citizenship? Or The Man Without a Country?
As the father of two boys, a 13 yo with autism and an NT 11 yo, I've felt this way, but you did so much better than I did at putting it into words.
Oh, and we homeschool. And my wife works, while I stay home and teach. Sometimes I lean more toward Man Without a Country.
I love reading your posts because so many of them are things that I'd love to say or stories I'd love to tell, but don't know quite how to get them out. I had a coffee date on Tuesday with an old friend while C was in school. It took me ten minutes to realize that if I let go of G's hand, she wasn't going to escape or run away. I watched in slight amazement while she contentedly walked with us, never straying more than arm's reach. I was almost giddy with excitement and then the guilt came. Glad to know I'm not unusual. =) Hope you all have a wonderful weekend!!
Another Beautiful Post
I don't have a second child, so I can't really relate to this feeling. But what a great post!
Another World
I can relate. It's like two different worlds. My (NT) daughter is three years younger than Griffin. In many ways, raising her is like raising our first kid. The experience is so different that, whenever she hit a developmental milestons, we would find ourselves saying stuff like, "Oh... So that's how that was supposed to go."
Enjoy that moment!
Amanda, I truly know the feelings you share in your post (and you shared them wonderfully by the way!) The preoccupation that surrounds our every moment with our SN kiddos can totally overshadow any experience....not to mention those that "should" be memorable or joyful. To say that I am not resentful once in a while would be completely untrue. Our NSN children need us too....and they need us when we are NOT preoccupied (kids are so good at intuiting the tension I'm sure!)
When the ABA folks are here and my daughter comes home from school, we have about an hour and a half that is mommy/Jade time... and we try to guard it like gold! It's good for my soul, and it is good for her's. We get creative and silly, and I find that I really ENJOY the fact that she WANTS to learn....she CAN learn and IS developing like a normal kid, for which I am so, so grateful. That gives me strength.
Beautiful
Amanda, you write so beautifully and so honestly, I feel so humbled and blessed when I read your blog posts. You make my heart ache and soar at the same time. And you make me laugh. What a gift you have and what a blessing you are.
Sunshine xx
Party
A friend of mine had a similar experience this week, Amanda. She had some of the same reactions you had, so I've forwarded your post to her. Thanks for the honesty and, as always, the beautifully written prose.
P.S. - Love the new site design! Happy weekend!
What Sunshine Said...
This was beautiful, like Sunshine said...I'm thankful you have the opportunity to experience "both sides" of parenting!
Wendy
Um...Mom?
Um...Mom? It's okay. No guilt required. You did nothing other than enjoy a beautiful child as you should be able to do, because you have a beautiful child who is behaving the only way she knows how. She was herself. That meant that you could be yourself. I get that you may not have recognized it right away. Sometimes, when you step down from the tightrope of special needs parenting, you don't recognize the feel of solid ground. And sometimes it feels more comfortable on the tightrope. I hope you get many many more moments like the one you described, sans guilt, for both your's and Willow's sake.
Is NO one going to mention the awesome Yo Gabba Gabba kid? Lynn?! Big Daddy?! Where are you??
Thank you all so much for the love. Reading back over this post -- particularly in light of Billy's EXCELLENT school party yesterday -- I realize that it sounds a bit like somebody creating a problem where no problem exists.
Well, that's me sometimes. I'm so used to putting out fires that when nothing is smoking, I'm totally capable of striking a few matches, just to make sure they're working, and in so doing, setting everything around me aflame.
I think I just got lost in my own metaphor.
Anyway, thank you all. I truly don't know what I'd do without you :-)
OK, I turn my back for a minute.....
....and you totally change your site (thought I was in the wrong place for a minute) AND no one makes a DJ Lance joke. Or makes fun of the Jesus song. People people people. Do I have to do EVERYTHING around here????
Love the new look!!!
FINALLY ...
...someone made fun of the song to which my daughter is bustin' out her Step Up 2 The Streets dance moves for. She seems oblivious to the fact that "backin' her booty up" in a song about "Jesus in the Morning, Jesus in the Noontime" is probably not appropriate. At one point, she kinda started doing karate, so I'm not sure what's going through her head.
And DJ Lance is totally awesome.
This was a beautiful post. I don't have a special needs child, so this was a rare glimpse into something I know nothing about. I hope I say this right and I don't unintentionally offend anyone....
When I hear about parents with special needs children I wonder how I'm supposed to feel. Am I supposed to feel bad for the parent? For the child? Am I supposed to realize how incredibly lucky I am for having a "normal" child? If I feel lucky does that imply that a parent with special needs is not lucky?
I think this post helps clarify that "normal" is really just a relative term. And that we're all lucky, no matter what the circumstances because we have a child(ren) that we love regardless of anything.
jeanne @ inspiring ideas
What a sweet visit to "Normal Town." Although with kids, I'm not sure "normal" exists anywhere! :-)
I love the brother sister love relationship! What a lifelong bond that will be - invaluable.
How do you treat a person with a disability?
The above comment reminds me of a PSA from the '80s that said, "How do you treat a person with a disability? Like a person."
How do you treat the parent of a person with a disability? Like a parent, who's presumably doing the best he or she can. If they're obviously struggling, ask if there's some way you can assist. To those who say outsiders are not looking down on these parents, well, many aren't, but enough are to keep us on constant high alert whenever we take our children in public. If you doubt that, search "smockity frocks" AND "autism". She has since apologized, but there are millions more like her. We can never get away from them entirely. Imagine living in fear that someone would call the police and report you for child abuse every time your child ran a fever. Well, the neighbors have called the police on us because our son was having a meltdown, and meltdowns are far more common here than fevers.
How do you treat the parent of a child with a disability? Like a person.
Adorable! She has fantastic moves! Glad you got to have such a special day with your daughter. I'm sure you both needed it :)
this post touched me to the core. I love the way you captured the feelings of all special needs parents. No one is normal...most people's abnormalities are hidden and the Perfect Posse are just good at disguising their kinks.
I don't think any guilt is necessary - just enjoy the moment for what it is.
Life is filled with unique moments and special blessings - each of them different, but equally important.
Oversharer over here too!
Wow Amanda! I love your writing style. I also love the fact that you embrace the oversharer title as I do! Hello Soul Sister!!
Congrats on a successful Halloween weekend. My heart goes out to you as a mom who shares custody with my former spouse. I am familiar with the feeling of being in one place but feeling a bit of guilt for not being in another.
Keep the stories coming!
Total 21 comments
The awesome writer Maura Bowen over at 36x37 nudged me in her recent post, "Tag! You're it."
I was always crap at tag. I spent a lot of recesses reading, examining the contents of my satchel (yes, I had a satchel; I fit right in in middle school), or hiding and waiting for the bell to ring.
I considered constructing an elaborate fantasy, answering these questions as imaginary awesome me might answer them. But there are enough people out there who know that I once thought Versace was a chocolate, am always late or forgetting something and haven't been awake past 10 p.m. in four years. So here goes ...
If you could have any superpower, which one would you have and why?
The ability to stop time. I feel like I'm about 13 to-do items behind at any given moment – and that's on a good day. I'd love to be able to freeze the clock, clean the house, take a long hot bubble bath, read a book, and just stare at my beautiful children before they grow up and climb out of my lap.
This is how I imagine myself lounging around the house. (Photo: InStyle)
Who is your style icon?
HAHAHAHAHA! Oh wait, you're serious. I forgot that you've never seen anything but the pictures of me I care to share with the world. When I'm wearing makeup ...and pants.
I have no style. I would like to, but I'm nearly 40 and let's face it: The only shoes I think about are the ones with Lightning McQueen or My Little Pony embossed on them. I'd love to emulate the classy and stylish Nicole Kidman. But as I am not tall, red-haired, porcelain-skinned or super-skinny, I have to have more attainable goals. Like just trying not to wear pajamas outside the house.
But most days I'd be really lucky to look this put-together.
So anyone who doesn't wear pajama pants to the grocery store is my style icon.
What is your favorite quote?
“The cure for boredom is curiosity. There is no cure for curiosity.” -- Dorothy Parker
What is the best compliment you’ve ever received?
“Your blog helped me get through the month my child was diagnosed with autism.” If there's anything I can help with, any questions I can answer about our experience, I'm happy to. I try to respond to anyone who writes to me, whether it's on a comment on my blog or in a private email to AmandaBroadfoot@gmail.com. Because I feel like I owe the community that much. So many other blogs like Both Hands and a Flashlight, Stuart Duncan, AutismArmyMom, and BigDaddyAutism have helped me get through the rough days and long nights.
What playlist/cd is in your CD player/iPod right now?
The book Freedom by Jonathan Franzen that I downloaded from Audible.com. It's the only way I get to read for entertainment any more – other than blogs, of course. The narrator sounds so smug, though, that I just want to punch him in the mouth.
Are you a night owl or a morning person?
I'm going to have to stop making the same joke, but it's still true: By 10 p.m., I could fall asleep while someone was punching me in the face. We're up a lot in the night with Billy's sleep troubles, though, so I don't know what that makes me. I'm still exhausted at 7 a.m. I guess I'm kind of a noon to 1:30 sort of person (Willow's nap time).
Do you prefer dogs or cats?
Cats, cats, cats. I love other people's dogs, but seriously, the upkeep is just beyond me. You have to wash them and exercise them and take them to the bathroom, and the whole "picking up poop" thing is a deal-breaker. I'm looking forward to the day everyone in my house handles their own pooping.
What is the meaning behind your blog name?
"Life is a spectrum” is the new name of my blog, changed just a couple of weeks ago. It illustrates our philosophy of autism and life: We're all on a spectrum. After all, “normal” is most definitely a spectrum. The longer I live, the further away from the “normal” end of the spectrum I creep ... and the happier I am about that fact.
Enjoyed Learning about You!
I enjoyed reading this and getting to know you a bit better!
Fabulous!
Fabulous, as always! I dig the honesty. I swear, if I didn't come into the office three days a week, I'd be jeans and flip flops and dorky t-shirts every day of the week. Way to represent!
Here's hoping you get some sleep tonight. Waking up multiple times a night is hard on a mama. Hang in there.
This made me laugh!
What a great way to answer all those questions and share more of who you are - thank you!
Sunshine x
I LOVE this!
This was PERFECT from start to finish! Honest! Open! And funny! My favorite kind of q&a! :) I laughed out loud at your style icon and I loved your close! I think I'll creep away from normal with you!
You Carried a Satchel in Middle School?
I don't know if this more sad for you or for me but, we share the exact same style icon. Weird, huh?
You are Mahvelous
I could be your style icon. I have not actually worn pajama bottoms outside of the house. I wear sloppy knit pant things that don't look much better, but since I do not actually wear them to bed they don't qualify as pajamas. And I have mascara on today. Take that, Nicole Kidman!
Favorite quote = amazing
That is all!
It's Good to Have Goals...
Loved this line: "I'm looking forward to the day everyone in my house handles their own pooping."
Sorry to break it to you, Amanda, but I'm at that point (except for our dog), and life still isn't perfect! LOL.
It was fun getting to know you better!
Wendy
Bandit's revenge
Thanks so much for all the love -- I needed it today. In addition to our own personal health care crisis, some jerk is hacking my site with some robo-commenting program that publishes crap comments with long streams of text about Cialis and buying cigarettes online. Needless to say, we will be biting the bullet and installing Captcha forthwith. In the meantime, please ignore all Bandit's wild rantings :-)
Total 9 comments
Dave (my husband) is English and graduated from Oxford University with a degree in biology. It's a pretty major thing to get recommended for Oxford, and Dave's math teacher, an alumnus, recommended him. Not because he thought Dave was excellent at math. “You get it wrong a lot,” he told Dave about his class work, “but you get it wrong in an interesting way.” He thought Dave had a unique brain and that Oxford could use more of those.
I think about this story sometimes when I watch Billy. A unique brain. Not less, just different.
I didn't always feel this way. When we first got the autism diagnosis, I was scared and angry and all I wanted to do was “cure” my son. I thought it was my duty to find some magic bullet that would wipe the autism right out of his system. And we went through a lot of them, as you can read in this blog.
But as an autistic scientist named Lisa Daxer said in a wonderful article I read this week, autism is a fundamental part of who my son is; it's a way of describing the way his unique brain works.
The wonderful thing about this past long, hard, rewarding, exhausting, surprising summer is the close bond I've formed with both my children. With Billy, it was an invaluable opportunity to really get to know my little mystery, as he sometimes seems to me.
My focus has shifted from trying to cure my son to trying to support him, encourage his learning, and nurture those sparks of interest and passion I see in his eyes. In that way, my job is no different than that of the parent of a normally developing child. Of course, some of our supports will include some speech therapy and occupational therapy and extra assistance with social skills.
But we no longer expect to spend every waking moment in therapy. As Lisa Jo Rudy describes so well in her book Get Out, Explore and Have Fun!, our support of our son also includes taking him to the museum and the park, encouraging his interest in music and getting him lessons in gymnastics (which we hope to start soon) and swimming.
I'm not saying that it's not hard sometimes. Clearly, Billy has communication problems, and life is always going to be difficult for someone who has difficulty communicating what they're thinking. (But he'll be in good company with most men on the planet in that respect.)
Billy has difficulty responding to or asking questions. He confuses pronouns. But he can remember verbatim a story or TV show he hasn't seen for months. He easily picks up phrases in any number of languages; he can now count and say the alphabet in Spanish, French, German, Japanese and Hebrew.
Socially, he's about a year and a half behind his peers. He's learning how to share, greet people, join a game. That may always be a challenge, on some level, for him.
But he's loving and funny and charming. He's just as devoted to his family and friends -- and even almost-strangers (like the school crossing guard) who might not realize their impact on him – as any normally developing child.
And he's happy. We all are. We're not just surviving; we're thriving. Some days we're happier than others – but then again, so are most families. Happiness is a spectrum, just like autism. So is intelligence. So is fulfillment. And acceptance and understanding. "Normal” is most definitely a spectrum.
We're a long way from Billy attending Oxford, but we are approaching the end of his first of week of Pre-Kindergarten at Buck Lake Elementary. It's been a great start to an important year for us. We'll be watching his development and behavior – and the classroom dynamic -- closely to determine whether another year in the public school system makes sense – or if we should start pursuing other options. So far, we're cautiously optimistic that there's a place for Billy's unique brain in the Leon County School system.
A unique brain. Maybe that's what the world needs – or will need – to solve big problems like cancer and AIDS and world hunger and global warming. Maybe hard work and intelligence alone won't be enough. It'll maybe take someone who can see patterns and make connections that a “normal” brain would never make.
I'm not saying that autistic people are going to cure cancer. Or that the only valuable autistic people are those savants who bring some super-skill to the table. All people are valuable. We are each truly unique and special. And we are all on a spectrum.
Life is a Spectrum
normal is also subjective!
Life is a spectrum
Life is a Spectrum
so insightful
Life is a spectrum
Total 6 comments
There's an apparently incredible new documentary out about autism, “Loving Lampposts,” directed by Todd Drezner, the father of an autistic son. Of course, it hasn't come to Tallahassee yet, and in the event that I ever get a minute of free time, I'm going to petition somebody somewhere to bring it here.
The documentary is about the ongoing debate in the autism community: Is autism a sickness that we need to cure? Or is it a variation in the human brain and simply an alternative way to think?
The “recovery movement” is made up of those individuals – doctors, parents, therapists – who believe that there is an “epidemic,” which may have been caused by toxic vaccines, insecticides, or other environmental toxins. They look at autism as a sickness that needs to be cured or healed or recovered from.
The “neurodiversity movement,” by contrast, preaches against focus on cures and treatments, pushing instead for greater acceptance and support. Many autistic adults find themselves in this group, apparently, rejecting the idea that they are sick and need to be cured. That doesn't mean they don't recognize the challenge of living with autism in this world, but they would rather see more attention on embracing people with differences, rather than trying to “fix” them.
On most days now, I'm happy to consider myself a member of this second group. I do believe that autism is a fundamental part of who my son is. While the condition is to blame for many of his challenges in life, such as his communication difficulties and troubles with coordination, it is also, I believe, responsible for many of his remarkable gifts: He can easily memorize complete books, movies, TV shows. He sings pitch-perfectly and has a perfect memory for tune. He has an amazing sense of rhythm. I don't want to cure him of who he is.
But occasionally I experience what St. John of the Cross described as “the dark night of the soul.” These hours seem to last an eternity, and most frequently occur when I wake up in the middle of the night – maybe Willow needs a diaper change or, more often these days, Billy wakes us up over the baby monitor with a startlingly sudden verbatim rendition of the dance party sequence in “Charlie Brown Christmas” – and I find it nigh unto impossible to get back to sleep. During those creeping hours between about two and five a.m., I wonder, “Couldn't we just cure a couple of things? How can I recover his ability to sleep?”
And then I start planning out the next day, thinking about all the ways I can use every single moment to teach him something new. Every single moment. I'm petrified by the sense that time is slipping away from me, that a “teaching moment” might slip through my fingers, and it'll be lost forever. As though he has one moment on a Tuesday afternoon to learn how to spell “cat” and after that, the moment is gone.
It's the middle of the night. I get a little crazy.
Case in point: We've just come off a week of “stay-cation.” That's what it's called when you stay at home and act like a tourist in your hometown.
We had a great week. We went to the Mary Brogan Museum, the park, the movies, the bowling alley. We tried to find “teaching moments” everywhere we went.
At the bowling alley, I showed Billy that his ball had the number 8 on it, and mine had a number 15. Each time the balls came out, he would find the number 8 or help me find my ball or Daddy's ball. It was great.
A couple of nights later, it's 3 a.m. and I'm thinking about the bowling trip. And I'm thinking about ways I could have made it more educational.
“The shoes!” I think. “There were numbers on the shoes!”
I couldn't believe I had missed that. I could have taught him his shoe size. It was printed right there on the back of his shoes. We could have talked about how Daddy's size was bigger because his feet were bigger. We could have learned sizes and “big, bigger, biggest” and which number is larger ... I could have kicked myself for missing it.
Like I said, it's 3 a.m., and things get a little out of perspective.
“I have to remember the sizes next time!” I tell myself. “How will I remember?” And it occurs to me that I have to leave myself a note. Otherwise, I won't remember by the morning, much less by the next time we go bowling.
So I sneak out of bed and downstairs at 3 a.m. to write myself a note.
And that's how I came to find Dave, the next morning, standing in front of the fridge with a puzzled expression on his face, holding a carton of milk in one hand and a Post-it note urging him, “DON'T FORGET: NUMBERS ARE ON SHOES!!!!!!!” in the other.
He doesn't even ask. He just sticks it back to the fridge with a magnetized letter “Q” and takes his milk to the table.
Billy comes to the table looking beautiful and sleepy-eyed and announces, “Cereal! With milk!” After a moment: “Please!”
And I look from Billy to the fridge covered with my crazy notes to myself and I wonder seriously about which one of us is dealing with the bigger issues.
Neurodiversity it is.
You are not Catholic, so stop beating yourself up!!
diesel generator Great enjoyment and
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Total 2 comments
Tuesday April 05 2011 08:57:42 am
Jen
Katie tries to lie, sometimes, and it is hilarious. She can't keep it going for 2 seconds. She instantly begins to laugh. She does try, though. Ben, isn't a great liar either, typical kid that he is. He will do it, but then come to me a few minutes later, seemingly guilt-ridden, and needing to tell me the truth..ha. Fine by me.
Liars Club
Tuesday April 05 2011 10:07:10 am
Amanda Broadfoot
The closest thing Billy comes to a lie at the moment is making statements that are so ridiculously and obviously not true that they make him laugh -- like you said Katie does.
For instance, "Mama has one HUNDRED eyes! Whahahahahah!" This hilarious joke kept him entertained for days.
Like you said, his inability to lie is fine by me :-)
Tuesday April 05 2011 07:25:33 pm
Tam
I lied exactly one time in my memory. I told my mother I'd cleaned the toilet when I hadn't... and within 15 seconds I'd not only apologized and started cleaning the toilet, but that lie has haunted me for the rest of my life. Other times I've told someone something and found out later that I was wrong, and those still haunt me... I didn't lie on purpose, but I might as well have, awful!
I honestly cannot fathom why anyone thinks lying is a good idea, or that fibbing is okay, etc. etc. It's just so unnecessary, and wrong, and causes SO much unnecessary ridiculousness.
Tuesday April 05 2011 10:25:42 pm
Lynn
I can't really get a read on Audrey yet. She's so godawful about answering questions or relating past events that it's impossible to tell if she's lying or just bungling the story. If it has something to do with scoring chocolate, I have a feeling that she'll learn quick.
What a Great Topic!
Wednesday April 06 2011 02:19:10 am
Cheryl D.
I should address this issue! LOL
Pants on Fire
Wednesday April 06 2011 04:13:40 am
Big Daddy
My NT daughter is not a cumpulsive liar like her daddy. Yet. But she is better at it than her big brother. On ocassion, Griffin will attempt to fib, but as soon as confronted, he confesses. He would make a terrible criminal.
Wednesday April 06 2011 09:03:52 am
writerwoman61
I too have a terrible time lying...I feel really guilty, and can't keep a straight face...
I also hate being lied to...
Hugs,
Wendy
Thursday April 07 2011 12:32:12 pm
Maura
It really is interesting to watch how different kids learn about and test the concept of lying. Both my boys enjoy giving lying a whirl, but neither one has learned to do it with a straight face. I like to think they'll grow up believing I can read their minds rather than their tell-tale smirks. And if they never learn to lie convincingly, I'll never have to worry about them blowing all their hard-earned coin on poker.
I love Billy's innocence and Willow's street smarts. I hope you're right in that they'll learn from each other.
Sunday April 10 2011 01:33:44 am
Kelsi @ Modern Mom Redefined
So glad I found your site!!! I LOVE IT! My son also has Autism (one psychologist thinks it's Aspergers), although he's already trying to do the lying thing. And the stealing.... pretty frequently, I might add. It's driving us nuts!
Very excited to read more!
Kelsi
Come say hi at modernmomredefined.blogspot.com
Great SIte
Monday April 18 2011 03:59:15 pm
Patty
Great Site. Found you thru SITS. I have a sweet 13 y.o. boy on the spectrum. He has recently discovered lying. But he sucks at it LOL
He still holds my hand and runs to greet me at the door after work for my welcome home hug.
monster beats
Thursday June 16 2011 05:00:23 am
monster beats
Katie tries to lie, sometimes, and it is hilarious. She can't keep it going for 2 seconds. She instantly begins to laugh. She does try, though. Ben, isn't a great liar either, typical kid that he is. He will do it, but then come to me a few minutes later, seemingly guilt-ridden, and needing to tell me the truth..ha. Fine by me.
Total 11 comments