You get to the school to pick up your 13 year old, and you find out that (according to him), no one has told him all day that he’ll be going to the dentist, so the first thing he says when he sees you is, “We go home.” You’re forced to explain that, no, we can’t go home. We have to go to the dentist. He isn’t pleased to hear it.
You haven’t had a chance to grab any apple juice before picking him up because the day had spiraled a bit out of control, so you pray that there is some juice left from his day at school. Thankfully, there is. You convince him that going to the dentist will be fun and give him a juice for the ride.
On the way to the dentist, he reiterates his urge to go home. You think about the previous dentist visits, and you tell him that it’s okay: they’ll take pictures of his teeth (he likes pictures), they’ll clean his teeth, and then the dentist will look at his teeth. You make him repeat it back. You go over it for the whole ride. Then you miss the turn for the dentist’s office and have to make a bunch of left-hand turns in order to get back to where you needed to be.
You check in at the dentist’s office, and you discover that they’ve lost a bunch of information, so you need to fill out the five pages of forms. Two of the pages aren’t things you can actually fill out – they ask about whether or not the patient has pain, has any sensitivity to cold or heat, and other questions that would require a level of communication that doesn’t exist. Then there’s a page that asks you to initial that you understand that only the patient can go back by himself. You go up to the counter and talk to the woman who laughs it off and says it’s okay, there’s no test, but you think it’s kind of important that they realize you don’t know the answers to these questions, and they won’t be able to get them either.
The hygienist comes to get you, and instead of following the carefully prepared order of operations you’ve outlined, she immediately wants to start the cleaning.
Your son begins to have a bit of a meltdown the minute he sees the chair and tells you (and the hygienist) quite loudly and repeatedly that he wants to go home. You change the order of operations and begin telling him that it’s just going to be a cleaning and then having the dentist look at his teeth.
He still refuses to sit in the chair. He instead sits in the dentist’s chair that spins, and he stares at the seat while repeating that he wants to go home. He’s almost crying, but not quite. You know that the other patients are probably not enjoying it because they are also kids who want to go home, but you try not to focus on that. Instead, you get into the chair to show him that it’s comfortable and it’s fine, and look, see, there’s a light, and they need the light to be able to do anything, so how about we switch places?
Miraculously, it works.
He gets in the chair for you, but he is still complaining. That’s okay. You rub his leg while the hygienist begins to clean his teeth. And HE LETS HER. Yes, that’s right, he actually opens his mouth, he picks the mint flavor, and he lets her clean his teeth.
You almost kill the hygienist there and then, though, because as she’s working with him (brilliantly well, actually), she begins to try to soothe him and she brings up Dad. You want to crawl inside yourself. Maybe he didn’t hear it, you think. But, of course, he did. And he immediately focuses on wanting to go home and having Dad waiting at home. Neither of these things will happen right away, of course, and now he’s upset again.
You have to tell the hygienist that, no, that’s not a good thing to use to make him feel better because it will only make things worse, and she apologizes, but the damage has been done, and while she’s working so hard to clean his teeth, he is talking around her – quite clearly – and saying that he wants to go home and that Dad will be waiting at home. Inwardly, you are cringing and hoping that he will magically forget it, but you know that isn’t going to happen because he doesn’t forget things.
The cleaning is over, and the dentist comes in, and she gives you the news you don’t want to hear – there’s a big old cavity on tooth number 13 (of course it was number 13), way in the back there, and they will need to fill it. Which is both good and bad: bad because they will need to sedate him, but good because they offer sedation and they do it at 7:30 in the morning, so keeping him from eating until the appointment isn’t as hard as you thought it would be. But now your nerves are even more frazzled because you have to start worrying right away, even though the appointment won’t be for over a month.
Then, to make sure she hasn’t missed anything, she asks to see the x-rays. The x-rays that no one took. The hygienist says that she didn’t because she was worried he wouldn’t let her.
You are mentally slapping your head, and hers, because you had taken that out of the rotation, and now you have to tell your son that, no, he can’t go home yet even though he finished the final thing on the list because the list has been re-ordered again, and now he has to go get pictures taken. But he likes pictures enough that he goes along with it, and he does very well, as you knew he would, and then it’s time to go back and wait in the chair again.
The chair is not happening.
Nope. Not the chair.
Luckily that’s okay because they don’t need him in the chair – they’ve already done all that good stuff, and so he can sit in the dentist’s chair (his original goal), and so he does okay, other than repeating that he wants to go home and then getting a little nervous because a kid in the next exam room over keeps trying to make a break for it and comes past the doorway multiple times.
Finally, it’s time to go find out how much everything is going to cost. Bonus: the day costs nothing thanks to insurance, but the filling will be $400 after insurance pays because of the need for sedation and all the other fun things that go with it.
So you leave, and you begin worrying about his next dentist appointment.
Don’t get me wrong, I know that I’m going to find insensitive people just about everywhere. But I didn’t expect to find them in out-patient therapy. (If you want to know why I’m currently in out-patient therapy, you can check out my other blog about my mental issues…)
Anyway, so the other day in therapy, while she was talking, one of the other women – let’s call her Zelda – said that her brother was Autistic, and he was around her age. She’s about 60, ready to retire, and he’s living at home with their parents still. She pointed out that, at the time, they didn’t have much they could do to help him, but she felt like it was better now. She commented that he was the family’s project. I thought about talking to her then, but I decided against it.
So the topic was put to bed, and no one else talked about it…until…
Something came up, and she asked me, before therapy started, about whether or not I had any children. Of course, I said, yes, I have a son, he’s 13, and he’s Autistic. Zelda asked a few questions, and when I explained that he was fairly moderate to severe on the spectrum, she said, “Oh, that’s bad.”
“No, it’s not,” I corrected her. “It’s not bad at all. It’s just what he is.”
She back-pedaled. She didn’t mean it *that* way, you know. She was only trying to say that she knew it was hard. Okay, I’ll take that. It’s hard on him. It’s hard on us. It’s hard on his teachers. It is hard. But it’s not bad.
Which might be why I was already in the fight-or-flight mode when another woman, let’s call her Aileen, said that she was there because of anxiety and her family. Her family drove her crazy, she said. They wouldn’t leave her alone. Even when she tried to take a walk by herself, they wanted to come with her.
“It’s so retarded.”
Yup. She said that. About the fact that her family wanted to be around her all the time.
Now, don’t get me wrong – I’m not saying that they’re stupid for wanting to be around her all the time. But I do think she’s pretty uninformed to use the r-word in a psych setting.
But no one said anything. Not even the therapist leading the session.
Because I’m not one to shy away from confrontation when it’s appropriate, I went ahead and raised my hand.
“Hey,” I said, “I’m sure you didn’t mean it this way, but, see, I’m part of this movement. Spread the word to end the word. The word is retarded. I know you just said it, but that’s kind of the problem. It’s pretty insulting to use it as an insult. My son has intellectual disabilities, and so I’m kind of sensitive to hearing it…”
I know I said more than that, and she looked a bit surprised.
I brought up the need to be respectful of all people, and I pointed out how if she was had said something that insulted another group of people, I still would have brought it up because it is disrespectful to insult anyone, especially if they’re not there to defend themselves.
She was cool with it. She apologized, said she hadn’t meant it that way, and said that she normally tries to be careful because she had a cousin with…and she stumbled over it (because I guessed she hadn’t heard it before)…intellectual disabilities.
And then the therapist got involved and made sure that she was okay with me calling her out and asked if I often did that, and I said that, yes, yes, I did. All the time. Because it was important to realize that insulting people because of their disabilities was not okay, and like none of us would like it if we were turned into negative slang, we shouldn’t do it to other people.
I hadn’t expected to have to defend myself, or my correction of someone who used a word as an insult, but there you go. You never know when – or if – you’re going to have to speak up. So don’t be shy. If someone says it, tell them.
Sixth place out of six, that is. Because sixth place is still worth something.
Don’t get me wrong. I grew up in a world without everyone getting a trophy. You had winners. You had losers. I played basketball (very poorly), and if I was lucky, they would let me in for the last minute or two of the game, when my playing couldn’t affect the final score. I was one of the official bench warmers. And I was okay with that because I knew I wasn’t good at it. But I tried. I didn’t expect a reward for trying. I would skip the award dinners because, well, I wasn’t getting an award, and the dinners weren’t really that great.
But that’s not the same for Simon.
Simon is in Special Olympics. This past Saturday was his bowling tournament.
In Special Oympics, everyone is included. Everyone plays.
Some of the kids there can’t handle crowds. Some can’t handle waiting. Some can’t handle noise. Some can’t handle sitting still. Some can’t walk. Some can’t speak.
And that’s all okay.
Because it’s Special Olympics.
The pledge they recite before the games begin is always the same:
“Let me Win. But if I Cannot Win, Let Me Be Brave in the Attempt.”
They are all brave.
They push past what makes it hard for them. Some of them wear special noise-cancelling headphones. Some of them roll up in their wheelchairs and push the ball down a ramp. Some of them need to have a coach or assistant down in the bowling area with them. But they do it. And they’re proud of doing it. And they have fun doing it. They have fun being involved. They have fun competing. They have fun knowing that they are being like every other kid out there – win or lose, they are playing.
So Simon got sixth place out of six. And he stood there, tall and proud, while they put the ribbon around his neck. And we stood there, tall and proud and taking pictures, knowing that he made it through another tournament, through all the things that normally would bother him, and through two hour of focus.
I got two different emails in the same week, and it made me sad to read them together. One was a link to an article titled “Tips for Teachers: How To Deal with Upset Parents.” The other email was from a group I belong to, a parent support group. While it sometimes is a good place to exchange information, but sometimes…not so much.
Now, first off, let me say that I will not name any names, and the person who wrote this legitimately believes it, and, as such, I don’t want to mock her or make fun or her in any way. Instead, I want to sympathize with her, and I wonder what it took to make her believe this.
Here’s a quick quote from the post:
“They [the school districts] think we should be grateful they even allow SE kids in school and parents should just be happy for a ‘break.’
“Advocacy of SE kids can be draining. You win one battle and they will hate you. You think if you win one battle the school will change, but they never will until some powerful force forces them to do so. I’d put the Office of Civil rights on speed dial. Don’t look to the state education board to be in your corner. The first thing they do is ask you what district you are talking about, and then they give the district a heads up.
“Each year, they have teachers and several school personnel go to a seminar put on by district lawyers who teach them how to get around the law.”
Now, I can understand her feelings, to some extent. Many years ago, we had a problem with my son’s school district. And we found out, after the “fight,” that the whole reason it was even a fight at all was because of one person – one person who was probably too scared to admit that she had made a mistake. People below her were willing to work with us. She, however, seemed unable to let them because it would undermine her perceived authority. It was a bad experience, and if we had continued to have bad experiences like that, we probably would feel like the person who posted the above message.
But…I have to say, I don’t believe that school districts are bad and evil. I don’t believe that schools seriously send their teachers to a session to learn “how to get around the law.”
What I believe is that there are bad people everywhere. You can have a bad director of special education. You can have a bad teacher. You can have a bad lawyer. You can have a bad police officer. You can have a bad barista. (Sorry, coffee is an important part of almost every SE parent’s life, amIright?)
As someone who “won a battle” against a district, I have to say that I have not felt hated. I have not felt like the school refuses to change. I have not felt like I need to constantly be in touch with the Office of Civil Rights. Maybe it’s because I’m lucky. But I don’t think that’s it. I think there’s something else there.
I think most people who are in special education are there because they care. Because they want to make a difference. They share things like the article written by Dave Wilson where he advises teachers to reflect on what parents say and what they mean, be open to ideas, ask for help, and communicate the positives. Does that sound like something that would be out there if these teachers and other professionals didn’t care? If they really went to training to learn how to avoid the law, why would they care about connecting with parents?
If you, as a parent, honestly feel that the school, the teachers, the district, even the state education agency is out to get you, you may need to stop. You may need to read that article and see if you can apply it to yourself. Do you need to learn how to deal with the school and its reps? Are you actually the problem?
Today was the Special Kids Day at the Galveston Rodeo!
Today was also the day that the weather forecasters were totally wrong (again!), and while they promised that the rain would hold off until the end of the events. Didn’t happen.
We got there by 8:30 because Simon’s teacher told us that the bus would be leaving the school at 8 a.m., and they expected to be there within about half an hour. I could have sworn that, in years past, it was more like 9:30 or 10 before the busses got there, but I gave up my morning coffee just to make sure we were there on time.
The parking lot was empty when we got there.
Lots of volunteers, standing around in purple and blue and other colorful shirts. Lots of cool stuff set up for later in the day.
But nope, not any sign of school children (or adults) with special needs.
Okay. We hung out in the car.
We got out of the car, stood over by the covered arena. Met up with the head of special programs for DISD who told us that she hadn’t even heard from the schools that the kids were on the way.
And it kept getting darker. And darker. And darker.
Then it started to rain, just as the busses showed up.
We had our umbrella with us, and we all got under the covering and into the seats.
Then it was time for waiting. And waiting. And waiting.
A lot of the busses had been delayed by the weather, so what normally started at 10 am instead started at about 11.
But it did start, and everyone did enjoy it.
There was roping, barrel racing, bull riding, all the stuff that had been promised.
There was, however, no carnival. No rides. No games.
The officials there decided to go ahead and bring the lunch into the kids instead of trying to herd a group of kids through the rain to the other covered building.
That was when we decided to go ahead and leave. Simon never lasts much beyond the rodeo – he has a really hard time transitioning back to school after trips – and so we let his teacher and his aides know that we were going to go ahead and take him out.
We headed to Sonic, got him a grilled cheese, and ran some errands.
Simon did have a bit of a rough day after that; I think the change in schedule really messed with him, and the weather was heavy and oppressive and definitely didn’t help any of us.
Nonetheless, a good time was had by all, as I think is clean from the pics included throughout this blog. 🙂
Our current schedule for Mondays is that Patrick comes home early to get Simon off the bus because I have class until 3:50. Then I come home after class, and we normally hang out, hit the store, whatever. Today, I got home, and Simon immediately let me know what tomorrow is: the rodeo!
He loves the rodeo.
It’s the Galveston County Rodeo, and every year, they offer a ‘Special Kids Day.’
It’s free, and it’s awesome fun. They have a short rodeo, complete with barrel riding, bull riding (teenagers trying to win scholarships – it’s very unique to see a high school boy trying to hang on to a bull for 8 seconds…especially for those of us from NJ who never thought of bull riding as a high school sport), and roping. Then the kids get free rides on whatever they open up in the carnival, and they get to play games that they always win and get little prizes. Simon normally gets at least one stuffed animal and hops on the merry go round.
So that’s where we’ll be tomorrow, bright and early.
Simon will hop the bus to school, eat his breakfast, and then hop the bus to the rodeo.
We, meanwhile, will eat our breakfast and then head to the rodeo and meet up with him and the rest of his class. Hopefully the rain will hold off until the afternoon!
Simon had a bad morning. Which seems fair because I had a bad morning, too. I seem to have picked up the stomach flu that’s going around, and I woke up with a serious headache, severe nausea, a stuffed-up nose, and a sore throat. Fun!
But still more fun than Simon had.
Apparently, starting at about 8 a.m., he began throwing a fit at school, demanding that his teacher call us because we would “take him to the zoo.” He told her to “call mom and dad” and that “mom will take you to zoo” and “dad will take you to the zoo.”
Uh. No. Nope. There had been no zoo discussions. No mentions of the zoo. No idea where the zoo concept came from.
But the argument about the zoo lasted.
I was still asleep and trying to feel better when the teacher tried to call me, so I didn’t hear my phone, but she called Patrick next, and he answered. Then he had to get on the phone and explain to Simon that no, no, we were not going to pick him up from school, and he was not going to the zoo.
That phone call happened at 9:30.
An hour and a half after Simon started wanting to go to the zoo.
At 10:15, he finally calmed down.
Let that sink in. It was over two hours of Simon freaking out because he got it into his head that we were going to take him to the zoo.
His teacher sent home an ABC page. (For those not in the know, ABC = Antecedent, Behavior, and Consequence. In other words, what happened to cause the behavior, what behavior was it, and then what happened because of his behavior.) The page goes into great detail about everything she tried to calm him down. It includes instructions, prompts, redirection, social stories, counting, alternative behavior techniques, squeezing a ball, and breathing. That’s a lot to do, especially when you consider that he was screaming at her and then getting physically aggressive with her, including scratching and pinching her.
It spanned going from the cafeteria to the classroom to his independent work time to group work time to quiet time to independent computer work.
And this is why we all need to be appreciative to special education teachers. Because this is what they deal with. This is what their days are like. This is what they are trying to help with.
At the same time, I also wanted to point out that while the teacher wasn’t enjoying herself, neither was Simon. That had to be a truly stressful time for him. He spent over two hours completely wound up. He couldn’t calm himself down, and he couldn’t get anyone else to do it, either.
Imagine, if you can, what it would be like to spend two hours completely freaking out. You are trying to get a message to someone, but you can’t. You are trying to get something you need, but you can’t. You are stuck, unable to communicate, unable to calm down.
He was better after that. He found a way to calm down, he had a good afternoon, and then he fell asleep on the school bus coming home. He got to go horseback riding at SIRE, and then, when he got home, he went to sleep.
But not before mentioning that he was going to “have fun” tomorrow “at the zoo.”
I told him that there would be no zoo tomorrow – he could go to the library, though, which he agreed would be a good replacement. I am thinking, though, that Sunday might be a day at the zoo now…
This was ARD Day!
An ARD is a (normally) yearly meeting that is meant to help determine the IEP for a child with special needs. For those not up on the alphabet soup, ARD is “Admission, Review, and Dismissal,” and it deals with creating, updating, changing, whatever goals and objectives for the year. They happen to bring a child into special programs, keep the child in them, or move the child out of them, whether because the services are no longer needed or because the child is graduating. The IEP is the Individualized Education Plan, which is needed because every child in special education will normally need their own plan in order to make sure they are meeting grade-level (or functional-level) education goals.
Makes sense so far?
Today was our meeting.
I had gotten the call from the speech therapist last week, which I had blogged about, and the meeting itself was this morning.
First – the speech therapist really, really thought that we were gonna agree to her idea of halving the services Simon received. She began all friendly like, touched me on the shoulder (don’t touch me!!!), and mentioned that she “and Mom” had “chatted.” Uh-huh. “But Mom wanted to think about it.” It felt like condescension center in the room. So Mom spoke up and pointed out, “Yeah, and I disagreed with it then, and I disagree with it now, too.”
The conversation (often one-sided: her side) went on for almost an hour. She kept arguing that he needed *less* pull-out speech therapy because “the goal of speech therapy was to get out of speech therapy.” Which is kind of funny because there we were, thinking that the goal of speech therapy was to increase his speech and help him with daily functioning! How silly of us! She argued that measurements were subjective (uh, no, they are objective when you make an objective and then measure it by 7/10 tests as a “mastery” of the objective), and she argued that the fact that he hadn’t progressed in some of his goals as proof that he needed less speech therapy and more “consultation,” i.e. she would talk to the teacher and observe him, but not actually work with him.
She couldn’t provide any evidence or proof that her method of change – giving him less one-on-one instruction and help – would actually helped, nor could she back up her choice except for her “professional opinion” (which she repeated about eighty times in that hour). She cited that Simon was answering questions about videos, and said they were different videos every time. I’d like proof of that. Because he sure doesn’t do that anywhere else. He still says “yes” when someone asks him how his day was. Her response was that it wasn’t a “wh” question. Umm, yeah, because people only ask “wh” questions. “How” should just be dropped from the English language!
Another thing she said that set my nerves on end was when we stated that he did not make requests – he simply will say what he wants “banana” or “crackers.” She said that what he was doing was acceptable “for his disability and his placement.” Woah. So we should just give up on getting him to use sentences because he has autism and is in a self-contained room? Really? Cause if it’s all about disability and placement, lady, then let me tell you what I think about your functional level when it comes to talking to parents…
In the end, we had a bit of a stalemate and agreement: Patrick had pointed out that if having the consults were so important, then why not add them to the already in-place speech therapy? I think, to shut us up, she agreed to provide both the consults and the in-place speech therapy through the first nine week period of the next school year. The best part? That’s more than she wanted to give him. She would have done better to just argue to keep it the same.
Now, we will be going down after those nine weeks. Unless, of course, we call another ARD and argue some more. We’ll see how it goes. She might be right, and going down might help. But I think that going down now is a bad idea, and as I’ve said (and heard) so often – parents are the experts on their child. A woman who sees my son once a week is not an expert on her, regardless of her training. She may be an expert on speech, but that doesn’t mean she knows Simon.
Second – the OT, after hearing the hour-long argument with the speech therapist, said, “You know, I was going to suggest going down to three sessions with him, but I think we’ll just keep it at four.” To be fair, if she had suggested three, we probably would not have argued, but I’m glad that she kept it at four because I do think that will be good for him, at least through the transition to junior high. Maybe when we have our ARD in the fall, we’ll drop that down.
Third – and final – argh! ARD! ARDs are always stressful. And this time, for some reason, we hadn’t been provided with any paperwork ahead of time, which made it worse because we weren’t sure what to expect. In the past, we normally get some paperwork to let us know what they’re going to go over. I really don’t like not getting it. The goals/objectives should be decided by the ARD committee, and when the school keeps the parents in the dark about the drafts, it can make things worse, cause more stress, and, honestly, make it feel like the parents are not a welcome part of the committee.
Now, we’ve been doing ARDs for nine years, and we’re pretty comfortable with the ideas of asking questions, asking for clarification, and disagreeing with what other people say. But for those who are new, here’s my advice: don’t be afraid. And remember that if you don’t ask, you don’t get. Get data if you need it. Get information. Ask questions. Demand responses, if you have to. You’re the expert on your child. You’re the advocate for your child. You’re the one who has to be willing to do what it takes. So, to totally steal someone else’s motto: Just do it!
I know, I know, I just can’t shut up about the whole tolerance thing. But I really can’t. It’s too important.
And I was reminded of that back in December at the tournament for Special Olympics bowling.
It was an interesting morning. We got there on time, found out what lane Simon would be bowling on, and then settled in. Minutes after we got there, the boy sitting next to Simon pulled down his own pants and began masturbating. Whoops. The aide with him stopped him, and the boy sat back down, seemingly okay again. Time for the pledge of allegiance; everyone stood, the pledge ended, and the boy whacked Simon on the head. Hard.
For a second, we thought Simon wasn’t going to respond to it. He will sometimes get hurt, and then ignore it, like a toddler who falls down and only cries if a parent says something about it. This time, though, I think it was too much of a hit, and he started crying and getting upset. Not that anyone can blame him. I mean, if I’m standing there saying the pledge and someone whacked me on the head out of nowhere, I think I’d start crying, too.
The aide with the other boy pulled him away, and promised they would keep him away from Simon. We said fine because, hey, it happens. Patrick went down to the seats and held Simon, trying to calm him, and it took a while, but eventually, Simon seemed to be doing a little better. But he still wanted Patrick down there with him.
Another mother was also down with her son. No one was bothering anyone. No one was complaining. No one was unhappy (except for Simon, who was still getting over the random smack).
Then a different mother came over, looking for a Special Olympics official. She was unhappy because there were parents down with the children – how dare that happen! She asked an open question about why the parents were down there, and I explained what had happened with my son and that my husband was there with permission and good reason.
“Well,” she huffed, “what about the mother down there? Who’s she there for? Why’s she down there?”
I told her I didn’t know, and she continued her mission, finding someone to complain to about the nerve of some parents, and succeeding in getting the other mother removed from the sitting area.
I don’t want to fall back on a favorite saying of a friend of mine, because the saying is completely inappropriate, yet somehow it makes me giggle when I apply it to this situation. The saying? Snitches get stitches.
Really, I don’t think she should get stitches, but I do wonder why she felt the need to police other parents and other children. Aren’t we all in this together? Aren’t we all just trying to get along, get through, get happy? Why would you try to make someone else – and someone else’s special needs child – unhappy? Why?
Now, to be fair, I do understand that she was looking for just that: fairness. She didn’t want anyone getting special treatment. But sometimes the rules, especially for kids with more severe problems, are hard. Not being allowed to have a parent or aide with them can make it very difficult for them to compete. The bowling alley is loud, it’s overwhelming, and it’s very, very busy. The kids need all the support they can get. Yes, you want your kid to win if he or she is the “best,” but what about going with the theme of Special Olympics? If I cannot win, let me be brave in the attempt…