I try not to politicize my blog. I want it to be a place where people from across the ideological spectrum – provided they communicate civilly – can feel welcome to discuss and share stories about living with autism. I will share my views with anyone who asks, and I will defend people’s right to share their opinion.
I've deviated from this rule a couple of times. I have strong opinions about health care. And I refuse to believe in the existence of Sharron Angle.
I will also remove you from my news stream on Facebook if you rant a lot or pick political fights online or call people “stupid” for having different political opinions than your own. I invite and encourage healthy, well-informed debate, but I don’t want to spend my day being angry or listening to angry. FYI, I won’t hang out with people who do that In Real Life either, but the fact is, people will say a lot of stuff online that they’d never say in person.
But this is why I remained blissfully unaware of Ann Coulter’s ignorance until recently. OK, not unaware, but I was able to avoid her until the last 24 hours when she tweeted the following message:
I know that people are going to use that word. Ignorant people. People who don’t have extensive vocabularies. People who have had no reason to be integrated with people with special needs for whom that is a hurtful, hateful word. When I was a ridiculously naive teenager, I'm ashamed to say that I thought that word was hilarious. I grew up, and I stopped doing a lot of immature things.
I don’t know a lot about Ann Coulter, but she hasn't been a teenager for a while, right? I thought she was supposed to be some kind of communicator. Isn’t she paid to talk on TV somewhere?
Was that tweet supposed to make people laugh? Why? Because she was comparing the President of the United States to a person with cognitive disabilities? Would we laugh if she used a word like “cripple” or a hateful racist word that I can’t bring myself to type?
@AnnCoulter, this is a picture of my beautiful son with autism, the one I plan to make sure is never exposed to people like you so he doesn’t hear that kind of language:
Thankfully, Billy is too young to use Twitter – and too smart and loving and open-minded to ever follow Ann Coulter.
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Life is a spectrum, and of course, so is autism. The main theme of this blog is the old adage, "if you've met one person with autism...you've met one person with autism." With that in mind, I wanted to reach out across the breadth of the spectrum, and invite some of my favorite bloggers to share their stories: of special needs parenting, of living on the spectrum, and of living WITH autism.
Today, I'm lucky enough to share a lovely and inspirational post from Ann, whose little "professor" is the shining star of her blog ...
Always a Champion!!
Too often I find myself envious of friends who have kids around the same age as Josh. How exciting it would be to watch him play ball, any kind of ball for that matter. The thrill of that first hit, striking the batter out or scoring the game winning run! Some days I would settle for getting him to simply ride a bike or just go for a little swim in the lake. I truly enjoy watching my friends cherish these moments their children will remember for a lifetime. However, that’s not my boy at all… Legos, video games and yes Minecraft is how he’d rather be spending his day. Too many sensory issues, lack of gross/fine motor skills and anxiety have kept him from enjoying many things most of us take for granted.
While going through some old photos I began thinking back on the earlier years. This is something I have avoided for several years now. Whenever a friend says “oh remember when they were little, don’t you miss those days?” I can honestly say yes I remember and NO I don’t miss a lot about those days. It makes me sad because Josh is an only child and I know I shouldn’t feel this way. Only another Mom of a child on the spectrum can truly understand what I’m trying to say here.
During those early play group days at around 2 years old it wasn’t easy watching all the other kids play together while Josh, if we were lucky, played alongside of them. They began to talk and develop friendships while Josh was just sort of ‘hanging’ in there. This was when the parade of birth to three therapists entered the picture. For the next year, 3x a week, it was a speech therapist, occupational therapist or physical therapist knocking on my door. Believe me when I tell you they worked him hard! Before I could blink my baby was entering Pre-K at The Sherman School.
As we begin to prepare for middle school I’ve decided to take some time to look back and really think about all he has actually overcome. Here are just a few examples.
In Preschool Josh didn’t speak very much. The first year was spent more running laps around the room, lining up toys during play time and how could I forget the daily ritual of walking up and down the fence each day while he chanted “cross the white line” over and over. This was a child who until he was four couldn’t figure out how to climb onto a chair without assistance. He didn’t like to swing on the swings, catch a ball or engage in play with other children without constant prompting from a teacher or a para.
There really is so much that he has overcome during his elementary days, I couldn’t possibly list them all here but I’ll share a few of the monumental ones.
This was a child who walked the halls, head down most of the time. When a friend, a best friend, would say hello to him he wouldn’t answer back. Until about the 3rd grade he needed us to prompt him to answer back when spoken too (actually, we still do at times).
Josh also learns differently than his peers and figuring out his style wasn’t easy. It took a lot of hard work on his part and on the part of his teachers, paras and therapist to find ways to best help him. I guess you could consider his teachers his coaches as well. With their constant guidance, support and their cheering him on he has begun to accomplish more than I have ever expected. We have a long road ahead but Josh has some of the best coaches a child could ever ask for!
Well, I’m happy to announce he no longer runs laps around the room or walks up and down the fence…not that I know of any way (LOL). He still struggles with gross/fine motor skills but you can always find him running, climbing and yes even swinging or spinning on the playground with his friends. He has even discovered a new like for running. It’s not love yet but at least he’s involved in an actual sport now! I’m afraid his first loves will ALWAYS be Legos, video games and any computer gaming obsession of the moment. He’s definitely my techno kid…
School will always be a little challenging for him but unlike the earlier days he engages much more with his teachers and peers. This was a child who in the beginning of 3rd grade was barely reading on a 1st grade level. Through hard work, practice and help from his coaches I'm happy to say by the end of 5th grade he was reading on a 5th grade level. This was the first year Josh didn't need summer school for reading...an out of the park Home Run as far as I'm concerned!!!
As he has gotten older he has also become more confident in himself and who he is. Last year, with the help of a few of his coaches, he helped create The Sherman School’s first annual autism awareness day (“Light It Up Blue” day). As everyone wore their blue I was told that day he walked those halls head held high with pride! This was a turning point for him, he’s beginning to advocate for himself now. In an article that followed Sherman’s autism awareness day Josh was asked what did he hope his fellow classmates and teacher’s learned from “Light It Up Blue” day? His reply, “It’s nice for kids know it is okay to have friends with and without autism. I’m really not that different. There’s nothing wrong with how my brain works, it just work a little different.” Josh may never be involved in your ‘typical’ sporting events but he will always be my champion!!!
Now with middle school quickly approaching we find ourselves beginning a new chapter of our journey. A chapter that is sure to be filled with pimples, hormones and a whole new list of social skills that will need to be taught to him. Lucky for Josh that I have a lot of patience, lucky for me that he is a quick learner and lucky for us both that he has the best coaches helping him out along the way!
I feel like I have only scratched the surface when it comes to talking about all he has accomplished the list continues to grow daily. I could go on and on but it may begin to get a little 'wordy' here. Remember… I’m not a writer (net yet anyway), just a mom with BIG mouth who is more than proud of her child for being exactly who he is!
Thanks for taking the time read this…
Please show Ann some love and visit http://joshsmomfirst.blogspot.com. Let her know you "met" her at LifeIsASpectrum.com!
Interested in guest-blogging? Drop me a line with a link to your blog at AmandaBroadfoot@gmail.com. I'll be happy to add a link to your blog on LifeIsASpectrum and return the favor by guest-blogging upon request.
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We've started letting Billy go to the bathroom by himself at our favorite and most frequented family-friendly restaurant. As soon as he's gone, I make Dave stand three feet away from the door of the bathroom, to keep an eye out for any pervs. The irony is, of course, this totally makes Dave look like a complete perv.
Last time, Billy took way too long and I was starting to get worried. People kept coming and going and no Billy. So I sent Dave in after him.
He found Billy safely locked into a stall, still doing his business, and chattering away, seemingly to himself.
DAVE: Billy, what are you doing?
BILLY: (surprised to see Dave) Oh! Daddy!
He leans his head down and looks under the stall next to him and then looks back up at his Dad.
BILLY: Tell that man to come back. I need to ask him some more questions.
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I’m long overdue for this update. Partly, it’s because I now work full-time outside the home and have less blogging time. And partly, I’ve blogged less because we’ve just been busy living our lives.Not that we weren’t living, obviously, when I was blogging a lot more. But I’ll be honest: I didn’t get out of the house much.
In the past year, we’ve taken our first family vacation together (without extra child care help), Billy has started after-school, and we have a cadre of phenomenal babysitters, who have assured me that Billy is by no means the most difficult kid they babysit … in our house.
Yes, my “special needs” kid is currently by FAR the easiest kid to parent in many ways. Let me quote the wisdom of a refrigerator magnet I picked up somewhere: “Normal is just a setting on a washing machine.”
So Billy is in first-grade and mainstreamed now. He has an amazing teacher (the same awesome lady he had for kindergarten), as well as a team of therapists and aides that support him at various times during the day – particularly during writing and math, which are his least favorites.
He loves reading – and he’s pretty good at it! He’s an awesome artist and has a real passion for drawing. We’ve discovered he can hula-hoop better than anyone we know, and he picked up the jump rope and started doing it almost instantly. Who knew?!
There are SO many factors which play a part in all the progress he’s made, but I wanted to highlight a couple of points:
• ABA Therapy – Applied Behavior Analysis changed our world for the better. I definitely think we lucked out with the greatest therapists in the world, but I also think the therapy was exactly what Billy needed – and us too.
We went from him being un-potty trained at the age of 4 ½ and incapable of holding a conversation with anyone to … less than two years later, he initiates conversations with peers, tells jokes – and poops in restaurant bathrooms completely unaided. He can dress himself, participate in circle time, tell me about his day (a bit), attend birthday parties, play games with friends in after-school.
This is not to discount the phenomenal contributions from speech therapy, occupational therapy (which helped significantly with his strides in handwriting and dressing), and special education. I highlight ABA because they go with us everywhere they’re needed. We have a problem with including Billy at church? Our ABA therapist shows up and gives us suggestions. We struggle with eating (an ongoing struggle, to be honest): They come to dinner with us (God help them) and observe, analyze and craft a plan for measureable improvement.
At no point do they try to “break his will” or just “teach him scripts.” Ok, certain scripts he has learned, like the answer to “What’s your address?” or how to say “Hi, I’m Billy!” But they push him to expand his comfort zone and use the language he has in a variety of settings and as a result, he applies it more and more effectively and has grown his social vocabulary enormously.
• Focalin XR: This is the stimulant Billy began taking about 8 months ago for ADHD. One of his therapists who had observed him over a couple of years said that “there are attention problems that I don’t think can be explained totally by autism. We should have him checked out for ADHD.”
Now, attention disorders don’t always – in fact, they rarely – behave the same way with a child with autism as with ADHD-only kids. They metabolize everything differently. And kids with autism respond differently to new stimuli – which the “on my meds” world can offer sometimes.
For years, I had been VERY skeptical about medications and autism. I had seen so many kids who seemed to be over-medicated … or seemed to my COMPLETELY inexpert eye.I say all this so that you’ll understand the massive nature of my turnaround. Focalin changed Billy’s world. I have no doubt he would not be mainstreamed right now if it weren’t for getting him the medication he needed to calm his system.
He used to rock his chair non-stop at the dinner and homework table, script all the time, buzz back and forth and crash and bang into things. Now we have conversations with him; he focuses on instructions at school, and he can happily complete a task – whether it’s homework or drawing a picture of his own creation – and take pleasure from those activities.
I’m not suggesting that meds are the answer for everyone – not at all. I’m just sharing my experience, in case there is someone as “on the fence” as I was who was wondering what they outcome had been for one family.
Word of caution: getting the medication right AND the dosage of the medication tweaked can take some time. Based on Billy’s weight, the guidelines recommend he should be getting twice as much, but when we doubled his dose, he seemed to get really anxious. So with our doctor’s guidance, and therapist’s data and recommendations, we cut him right back to the minimum dose.
Eventually, when he gains a little weight, we will probably try upping the dose again and see how he handles it. Because he could probably still use a little more help with his attention, but he’s doing so much better that we’re not stressing about it.
Life is good. Life is a spectrum – of success, of disappointment, of happiness and fulfillment -- but that’s a very good thing.
Yesterday morning, I walked Billy to school. Prior to this morning, he had been quite insistent, when I asked him what he wanted to be for Halloween, that he wanted to be an “octagon.”
Don’t get me wrong: I don’t try to stifle my kids’ unique, creative spirit. I was fully prepared to create a sandwich board-style stop sign costume for him, if that was, indeed, what he wanted to be for Halloween. But I tried to keep introducing him, in a non-pushy way, to other costume ideas that might be easier to wear all day at school …
Well, in the midst of our discussion of all the costumes our friends might wear, Billy ran into a buddy waiting at the cross-walk.
BUDDY: (at top volume) Hi, BILLY!!!!!!!!
BILLY: (at subdued volume) Hi, Buddy.
BILLY: What do you want to be for Halloween, Buddy?
(At this point, I had to pick myself up the ground so shocked was I that he had initiated an on-point conversation with a peer, a question that was entirely appropriate for his age and the social setting – unlike the recent survey he’s been running with any and all passers-by: “What color is your house?” )
BUDDY: I’m going to be a SCARY MAN!!!
BILLY: (after a pause) What kind of scary man are you going to be?
(And at this point, I think I lost consciousness for a full thirty seconds and I came back to life – after this unprecedented FOLLOW-UP QUESTION – to find Buddy explaining to Billy about how his Scary Man costume would have red eyes.)
BILLY: That’s cool. (in a voice that said he wasn’t convinced at all that this was cool, thus proving that he is trying out the art of the socially acceptable lie to save someone’s feelings.)
BUDDY: What do you want to be for Halloween, Billy?
(The mom is listening. The crossing guard is listening. Other parents and their kids have started listening. Oh dear, Oh dear, Oh dear. Don't laugh at him. Support his unique choices. If you act like my son is weird I will punch you.)
BILLY: An artist.
(Wait, what? AN ARTIST!? HALLELUJAH! It’s a person! It’s something he’s genuinely interested in!)
BUDDY’S MOM: Well, that’s … unusual.
(At this point, I burst into hysterical laughter. “Unusual?!” Lady, you got no idea.)
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I couldn't wait to talk to Billy about his day today (his first day all day in mainstream class)...
ME: Billster! Did you have fun in Ms. McCloud's class today?
ME: Tell me! What did u do?!
BILLY: (thinks for a minute, then) Played "Dirt Monkeys."
(not really sure what that is but it sounds like something he'd do)
ME: okaaaay...who did you play Dirt Monkeys with?
BILLY: Ms. McCloud.
Well, successful first day mainstreamed then!