March 3, 2010 has been designated End the R-Word Day. We encourage everyone to go to R-Word.org, join the tens of thousands of people who have taken the pledge, and spread the word to end the word to everyone you know.
The r-word is derogatory and demeaning toward our children and to everyone with intellectual challenges. The words we use in our everyday speech matter. We hear and read all sorts of negative language about our kids. It’s time to change that. Both Hands and a Flashlight has taken the pledge to work to eliminate the r-word and set a new and positive tone. We hope you will too.
Many of us are not without sin in having used this word in the past. I confess to my shame that I once did so. It is time that we all resolve from this point forward to eradicate the word from our vocabulary. Let’s commit ourselves to a new r-word – respect.
Take the pledge today, and for more information and resources see the Spread the Word Toolkit.
by Tim on January 18, 2010
I humbly ask Dr. King’s forgiveness for borrowing from his eloquence and for the meager quality of my own words as I draw from his gift to us, one of the most transcendent speeches in our history. All generations after him will be asked to tell about their dreams for our world. Here are some of mine.
Our futures are inextricably bound together. We cannot walk alone. And as we walk, we must make the pledge that we shall always walk forward. We cannot turn back.
Whenever local, state, and federal governments and the schools within our communities give us and our children so little and then tell us to be satisfied that we even get that, let us say, “We are not satisfied, and we shall not be satisfied until every child has a fair chance to realize their potential and all prejudice is washed away by the tidal wave of our determination and love.”
Let us invest ourselves fully in our families, go into our communities, and do the hard work that has to be done and not wallow in the valley of despair.
Though we face the difficulties of yesterday, today, and tomorrow, I still have a dream.
I have a dream that our children will not be judged by what they can or cannot do but valued for who they are, just as they are.
I have a dream that whenever someone either cannot or is not allowed to speak up for themselves, the very stones in the ground shall cry out and we will all stand and proclaim the immeasurable worth of all.
I have a dream that all persons with disabilities will be treated as equals and afforded equal rights and access in every aspect of their lives.
I have a dream that all children will be treated with respect and provided the education and services they need to express their gifts to the fullest.
I have a dream that wherever injustice is committed against an innocent child that we will respond tenfold with unity, conviction, and action.
I have a dream that people will have access to the vocational training and assistance needed to work and live independently and follow the path they feel called to.
I have a dream that schools will not have to hold bake sales and raffles to pay the bills and that teachers won’t have to buy supplies from the money in their own pockets.
I have a dream that teachers and therapists will be valued and paid at a level nearer to all the miracles they perform everyday.
I have a dream that more money will be spent on services and support for both children and adults.
I have a dream that whenever any of us begins to fall there will always be another to help them back up again.
I have a dream that instead of judging we will take the time to understand.
I have a dream that what unites us will be stronger than what divides us.
I have a dream that we will always be thankful for those who started on this path before us so that we might have faith that we can walk the road that still lies ahead of us.
I have a dream that no one will ever again be forced to choose between getting care and services for their children or buying food.
I have a dream that everyone’s voice shall be heard, regardless of whether it comes out of their mouths, their hands, a computer, or a picture board.
I have a dream that where so many now see despair, damage, and burden that we can instead all discover and proclaim hope, beauty, and opportunity.
I have a dream today.
Well, our semi-annual trip to the dentist (aka D-Day) went pretty well. And by ‘pretty well’, I mean we achieved the following goals:
- His teeth got cleaned.
- He doesn’t require any additional dental work.
- The dentist, hygienist, and staff were nice to us and respectful of the J-Man’s needs.
- We didn’t freak out too many other children in the office. (Yay for the separate room!)
- He still agreed to live in our house after it was over.
- No one sustained any major injuries.
I tell people, to an outside observer the whole thing looks awful and probably something akin to torture. To us, everyone got through it, we made some progress, and at least it was better than last time.
We liked our new dentist, too, which was an unknown to us beforehand even though they came recommended to us. The office was smaller, so there weren’t dozens of people and lots of noise and overstimulating crap in the waiting area. It was all fairly chilled out really. I particularly like it when the dentist and hygienists are calm and of even temperament no matter what happens during the cleaning and exam. I think the J-Man could have sprouted flaming arms and horns out of his head and it wouldn’t have affected them any.
We, of course, had to hold him down for everything. I had his torso and legs and occasionally a shoulder. Mary had arms. The hygienist had his head between her forearms and braced against her body while she worked. The fact that she got that spinning cleaner/polisher thing in his mouth and cleaned all of his teeth was pretty amazing, though I know he was in terror pretty much the whole time. [Insert parental guilt here.]
We got through it in 10 minutes or so. When it was done, he calmed down almost immediately in my arms. His ability to decompress after something that stressful is quite a testimony to his growth and general bravery. I can’t imagine much that would be harder on a child with serious oral sensitivity than to go to a dentist. It breaks our hearts to have to do this twice a year. Our hope is that eventually he’ll get more or more tolerant of it if we can set good dental habits and lay the groundwork now.
All that holding him down is not only emotionally painful, it’s also physically rough. Last appointment six months ago, I pulled something in my back and partially sprained my wrist from holding him. Last night, my Achilles tendon hurt (from bracing my feet on the floor) and now my low back feels like I did some sort of marathon weightlifting in the gym or something. Well, Ibuprofen and an ice pack should have it back toward normal in a day or so.
Good news is that his teeth are excellent! I know a lot of parents of autistic children struggle with their dental care. It took us forever to get teeth brushing incorporated into our routine. If we could go to the dentist everyday (perish the thought), he’d eventually get to a point where he’d be much more tolerant of it, but obviously there’s no way in this world that would happen anywhere other than our nightmares. But we can do things that will hopefully reduce his oral sensitivities – something we’ve been working on for over three years now.
We appreciated the calm and positive attitude they had and the respect and sensitivity they showed to the J-Man. So we’re pleased we made the change in dentists and will go back in six months to do this all over again. Each time it seems to get a bit better, so here’s hoping.
Tomorrow is our scheduled, semi-annual dentist day, which we’ll affectionately call ‘D-Day’. We discussed the saga of his last mouth invasion in a previous post. Feel free to read about how much fun that was.
Since the J-Man’s last trip to the dentist, we made an important change. We fired his now former pediatric dental practice.
Were the dentists nice? Yes. There was one doctor in particular we really liked, in no small part because his wife used to work for the doctor who diagnosed the J-Man with autism, so there was awareness and understanding all around about our situation. The problem was, there was no way apparently – at least not for us – to request which dentist we got to see. (I think their practice currently has 4.) The other dentist we saw was OK enough. I thought the hygienists pushed him pretty far, but I kinda get the philosophy behind it. It seems like we weren’t allowed to ask for the one we really liked, and that was irritating.
For us, the decision to fire them was two-fold.
1. All special needs kids are seen only during the noon hour, which not only makes scheduling a nightmare and interrupts his school day (not like we can go back to school after all that), it feels like yet another example of us being segregated from the world. That said, I do understand one of their reasons behind it. Their staff shifts overlap around noon so they have more hygienists there who can gang up on the kids – so to speak – and provide additional support. And really I could live with this if it weren’t for the crap in point #2 below.
They really stretched their luck, however, in that we were seen well over 30 minutes late for our 12:00 appointment last time. Please do not make autistic kids wait that long in a crowded, noisy, pediatric dentistry waiting room with enough noise, TVs, fish tanks, video games, and other insane stimuli to drive us all batty with nothing he could actually do except wander in and out of the chairs like some obstacle course.
So they reserve this time for special needs kids, but can’t actually see any of us anywhere near on time. Well, thanks for nothing.
However, all that alone probably wouldn’t have driven us away.
2. It was the attitude of their staff that did it. They acted like they were doing us this huge favor to schedule us in the first place. Once we got his school schedule for the fall figured out, we realized his originally scheduled appointment fell on his second day back after this long break. So we called many weeks ago to reschedule since we knew he’d need consistency at school after this long break. It’s not like we were set on getting an earlier appointment. We actually asked for an appointment during his next break two months after his original appointment. (Reminder – we called and asked to reschedule weeks ago.)
“I’m sorry. We don’t have anything available until next year.” (insert attitude here)
We know [expletive expletive] well that they have appointments. Just not for him. Before we ever went there, we got in with maybe a couple of weeks notice. Now that I’m sure his file is painted with a giant red flag – or what I’ll call “The Scarlet A” – it’s a six-month wait.
So, we asked around and found a new, smaller dentist practice. Yes our appointment is still during the noon hour, and presumably for the same reasons, which I don’t have a problem with when combined with a respectful attitude toward our kid. At least they were up front about why and were polite and welcoming, and they were able to get us in quickly with no fuss. We’ll see how this carries over into the actual appointment.
Just to be clear – no I don’t expect anyone to roll out the red carpet for us. I don’t expect sympathy or special treatment or anything. But I do expect the J-Man to be treated with respect and as a child with feelings and integrity regardless of whether he can talk to you about them or not. He is scared to death of having his mouth worked on – and we feel like crap as parents enough as it is for putting him through that – and if you’re not understanding and sensitive to that about him, you can go to hell. And if you want our business, don’t act like you’re doing us favors. Nobody is that good.
Enough ranting. Gotta go practice my restraint holds and find something to wear to protect my more sensitive bits from injury again.
People at work have started asking me (since I went back last week) if E is a “good” baby.
Me: “Actually, he’s already working on getting his second tattoo, and we’re not sure if his teeth are going to come in at all thanks to all that meth he’s cooking up and using.”
I hate and despise the term “good baby.” I know what those people mean: does he sleep; does he cry a lot; does he ever allow Mommy or Daddy to put him down? But that has nothing to do with being “good.” He’s a baby! How can he be BAD?
The reason I hate the term? Because by that meaning, the J-man wasn’t a “good” baby. He didn’t sleep pretty much ever, and he cried if you put him down (thanks undetected silent reflux!). But we still thought he was a WONDERFUL baby. Because he’s ours.
We got some serious assvice on things to do to make the J-man into a “good baby” – just let him cry, eventually he’ll go to sleep! Let him go hungry, eventually he’ll eat. Why would you do physical therapy? Force him to let go of your hand and he’ll walk!
We, uh, didn’t follow any of that assvice. And we still thought the J-man was a wonderful baby, and we think he’s a wonderful boy now.
I know, sometimes it gets to the point where you want to throw something, when you’re out of bed for the 5th time that night, and then the baby barfs on you… but I can’t imagine calling my baby anything but good. Or better. Or best. Or even BESTEST BABY EVER.
And E and J are quite different babies, even though the mini-naps we called Snaps seem to come and go for E (meaning sometimes he sleeps longer), while they were a constant for the J-man. But neither is/was being “bad” for not napping, or for napping. It’s what babies do. We didn’t think the J-man was “bad” for not eating. We didn’t think he was “bad” for not walking on schedule. We got him some help with those things.
I worry that there are people out there who DO think their baby is bad, defective in some way, because they don’t meet the milestones that are only general guidelines anyway. We didn’t think the J-man was defective… we thought he needed help. Those are two VERY different mindsets.
“Bad” people get punished in our society, sometimes by the very people who should love them the most. Babies who don’t meet the “good baby” criteria are judged, and so are their parents… and given a label that shouldn’t ever be applied to babies, and that can lead to that child NOT getting the help they need and deserve.
Every baby, no matter what characteristics that baby has, is a good baby.
And welcome finally to Part 3! This is the continuation of our series “What’s Your Autistic Toddler Like Now?”, a journey through what’s happening these days in the life of our autistic 3 1/2-year-old son and sequel to our very popular original article, “What’s Your Autistic Toddler Like?”. I meant to write this sooner, but illness has swept through the Flashlight household and rendered us all pretty useless this week.
If you haven’t already, go back and read Part 1 and Part 2.
I’m calling this group “Moderately Present” as these things are generally more common than not around here, but not as prevalent as the “Significantly Present” group from before. As with the previous posts, some of these are challenges for us and others are just things that are part of our day-to-day life. None of these are meant to be value judgments, just information about what one autistic toddler is like so you can perhaps see similarities in your own children or learn more about how these things are part of another family’s life.
I’ll be dividing this group into two parts. So we’ll finish this up in Part 4 soon.
Note: Wherever you see “DSM-IV” below, this means that attribute is part of the diagnostic criteria for autism spectrum disorders in the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. In medical terms, a specific combination of those DSM-IV criteria is what brings about a diagnosis of autism.
Same obvious disclaimer as before: We are not advising you on how to evaluate your child. Go get them evaluated by professionals with extensive experience with autism. Don’t just rely on some random people on the Internet – namely, people like us.
And here we go!
Characteristics That Are Moderately Present
Fixation or attachment to a particular object or parts of objects (DSM-IV; hard one to nail down for us) – For some, this manifests itself as obsessive-looking hoarding and organizing of objects. You might also see this as what seems like excessive fascination about a particular object (looking at a particular train for a long time or staring at a ceiling fan) or part of an object (a spinning wheel on a car).
The J-Man is all over the map on this one. It has gotten more noticeable over time, but I wouldn’t call anything he does here a major issue. The object(s)-of-the-day rotate regularly through an array of toys. For the longest time it was wooden blocks. Then it went to pieces of his farm animals puzzle, and then on to flash cards, and then wooden numbers, and then stuffed animals (which was cause for much rejoicing actually!), and then plastic food, and then randomly back through the order, occasionally mixing in some other things.
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