So, do you watch Parenthood? If you have kids, you really should. I was totally brought to tears last week with the storyline involving Max (the character with Asperger’s) befriending his classmate in the wheelchair. To me, it was like once they gave him a break from having to try to fit in with the typical kids, he was able to find someone he really connected with. I cried. A lot.
We recently had Owen’s three-year IEP review with his school – you review and update an IEP every year, but the three-year is where they do testing and observations to make sure the kid still qualifies for special education services. We didn’t think much of it really since we knew he’d still qualify for services.
The outcome was a little surprising, though, in that they recommended that Owen move from receiving level 2 special ed services to level 3. (Think of typical kids as level 0s) It means that he needs more help than he’s been getting.
On the one hand, this seemed obvious, knowing the trouble he’s had since starting third grade. On the other hand, this isn’t what I wanted to hear. I don’t know whether this is common or not, but ever since Owen was diagnosed and it was clear that he was on the high-functioning end of the spectrum, the people (“the experts”) we've talked to have always given us a pep-talk of sorts along the line of “he’ll be fine.” More than one person has said things to the effect of, “He might even outgrow his symptoms.” And I guess this created an expectation within me that all of this special ed stuff was only temporary…that we didn’t really need to go too far down that road.
I now realize that I was placing that expectation on him and that it was unfair. Really, it’s wrong for people (experts, even) to use that as some sort of carrot. Like, that’s what we should be looking forward to…the day that he can fit in. The day his autism isn't so much damn trouble. And I worry that it was that mentality that finds us here now, at age 8, putting him into the center-based autism program with the autism specialist, when maybe he could have been benefiting from it all along. Maybe things didn't have to be so hard.
I worry, you know. I worry about everything. But in this case, I worry that we should have known to do this sooner. I worry that I've been resisting the special needs realm (getting by with only the bare minimum of help) because I equated it with lower expectations and I never want anyone to expect less of him than what he is capable of. I know that sounds really small-minded of me and I thought I’d gotten over the label thing years ago. Obviously I know that “special needs” does not equate “lower ability,” as I gave birth to the counter evidence, but I’ve still been afraid that many of the programs are geared toward the lowest common cognitive denominator – which, maybe in some cases, they should be – and so I’ve never really felt like we belonged there.
I had a glimmer that I had been thinking about this all wrong just a few months ago when, after a frustrating experience with the local ski school last year, we enrolled him in the adaptive recreation ski program offered through our city. I began to feel relief just filling out the registration paperwork. Questions like, “Describe your child’s conversation ability” and one the choices was “Limited, except for topics he chooses.” And “Describe your child’s ability to cope with stressful situations.” (Seriously, I think they should ask that about all kids.) And he ended up getting one-on-one ski lessons with a teacher who seemed to have unending patience and positive words for him.
This is all to say that trying to hold him accountable to expectations set for people with neurotypical brains isn't asking him to aim high – it’s asking him to develop coping mechanisms rather than helping him hone his innate abilities. So we're trying this new thing and we’re not going to let anyone have lower expectations of him; we’re just going to create realistic expectations and then actually give him the help he needs to meet them.
And hey, maybe along the way, he’ll make some friends who have similar ways of viewing the world...or at least a similar obsession with Pokemon. And maybe that will be exactly what he needs. And it might also be kind of special.
Showing posts with label public school. Show all posts
Showing posts with label public school. Show all posts
Thursday, February 23, 2012
Sunday, November 13, 2011
Falling is Like This
Oh, fall. You are so cozy and inviting and yet simultaneously foreboding due to the promise of a cold, dark winter that follows you.
I'm trying to enjoy fall and all the squash-inspired treats it provides. However, I'm also mentally preparing to throw myself into the Christmas spirit because that's the only part of winter that I really enjoy. I figure Christmas carols and peppermint mochas can carry me through the first 4 weeks of winter (not winter according to the calendar, but according to the weather) and then there's a small grace period post-Christmas where the snow is still sparkly and fresh and cuddling up next to the fire is delightful...
Then we descend into the depths of Minnesota winter when the sun vanishes and it actually hurts to go outside. That's when it's time for vacation. This winter promises a family beach vacation. My mom often helps subsidize educational travel for the boys, so I'm trying to justify Mexico as educational since Aidan has started taking Spanish afterschool. That's kinda legit, right? I mean, maybe the trip will inspire him to continue his studies...or at least he'll learn how to order virgin pina coladas.
I don't think we'll be able to take this trip until March, but I figure knowing it's coming will make January and February slightly easier to tolerate. Slightly.
All this impending winter gloom is not being helped by the continuing saga of Owen vs. 3rd grade. When we last left our hero, he had recovered from the school suspension and all the adults had sworn to figure this thing out. Flash forward to last Friday when our hero fell apart in the lunchroom, threw a couple milk cartons, and landed himself back in time out with the principal calling me to take him home.
What is it about 3rd grade that is so different from 2nd? I don't get it and I don't think he knows either, but whatever it is, it's ratcheting his anxiety up higher than we've ever seen. And although he still seems to like school, it would appear that he is just barely holding it together most of the time. And sometimes...he just can't hold it together anymore. It breaks my heart. It shouldn't be this hard for him.
While I think the school staff genuinely would like to find a way to make this stop, their motivations are of the keeping the peace variety vs. a concern for Owen. And so, as it happens when you have children, my husband and I are left having to be experts on things we've never claimed to be experts in: education? autism? anxiety? children?
The only part of this I feel expert in is Owen. And even then, I can't claim to understand the way his brain works well enough to know the solution. I can't read his mind, and that's pretty much what it feels like I'd need to do to get to the bottom of this.
But I can make decisions that put his best interest at the center rather than the policies and procedures of the school. And I can stand up for him when people forget that he's a brilliant little boy who is having a hard time and not a troublemaker. And I can always hold him and remind him to breathe when the world feels like too much. I'd like to believe that all of that combined with some patience, some more research, and the help of a new doctor we're meeting this week will lead us to an answer of some sort, because things can't continue on this way or else we might all have to run away to Mexico permanently.
I'm trying to enjoy fall and all the squash-inspired treats it provides. However, I'm also mentally preparing to throw myself into the Christmas spirit because that's the only part of winter that I really enjoy. I figure Christmas carols and peppermint mochas can carry me through the first 4 weeks of winter (not winter according to the calendar, but according to the weather) and then there's a small grace period post-Christmas where the snow is still sparkly and fresh and cuddling up next to the fire is delightful...
Then we descend into the depths of Minnesota winter when the sun vanishes and it actually hurts to go outside. That's when it's time for vacation. This winter promises a family beach vacation. My mom often helps subsidize educational travel for the boys, so I'm trying to justify Mexico as educational since Aidan has started taking Spanish afterschool. That's kinda legit, right? I mean, maybe the trip will inspire him to continue his studies...or at least he'll learn how to order virgin pina coladas.
I don't think we'll be able to take this trip until March, but I figure knowing it's coming will make January and February slightly easier to tolerate. Slightly.
All this impending winter gloom is not being helped by the continuing saga of Owen vs. 3rd grade. When we last left our hero, he had recovered from the school suspension and all the adults had sworn to figure this thing out. Flash forward to last Friday when our hero fell apart in the lunchroom, threw a couple milk cartons, and landed himself back in time out with the principal calling me to take him home.
What is it about 3rd grade that is so different from 2nd? I don't get it and I don't think he knows either, but whatever it is, it's ratcheting his anxiety up higher than we've ever seen. And although he still seems to like school, it would appear that he is just barely holding it together most of the time. And sometimes...he just can't hold it together anymore. It breaks my heart. It shouldn't be this hard for him.
While I think the school staff genuinely would like to find a way to make this stop, their motivations are of the keeping the peace variety vs. a concern for Owen. And so, as it happens when you have children, my husband and I are left having to be experts on things we've never claimed to be experts in: education? autism? anxiety? children?
The only part of this I feel expert in is Owen. And even then, I can't claim to understand the way his brain works well enough to know the solution. I can't read his mind, and that's pretty much what it feels like I'd need to do to get to the bottom of this.
But I can make decisions that put his best interest at the center rather than the policies and procedures of the school. And I can stand up for him when people forget that he's a brilliant little boy who is having a hard time and not a troublemaker. And I can always hold him and remind him to breathe when the world feels like too much. I'd like to believe that all of that combined with some patience, some more research, and the help of a new doctor we're meeting this week will lead us to an answer of some sort, because things can't continue on this way or else we might all have to run away to Mexico permanently.
Tuesday, April 12, 2011
Hoping
It's funny how even though I'm blogging all the time now, I still fail to mention big things that are happening. For instance, we found a specialist for Owen!
Of course, you didn't actually know we were looking, did you? Because I never mentioned it. The bigger thing I never mentioned was the pressure we've been getting from the special ed teacher at school to put Owen on medication for anxiety.
The first time she mentioned it was at fall conferences. I was caught off guard, having never had anyone describe his behavior as signs of anxiety. I've since learned more about the anxiety that comes with autism and would have to agree that Owen's meltdowns do look a lot like anxiety. But medication still seemed like a big step, so I consulted his pediatrician who said there was no evidence that medication would be a good long-term solution for Owen and that, unfortunately, "some teachers like to make things easier for themselves."
So I started looking for a specialist and found that most of them had mile-long waiting lists and didn't take our insurance. When we went back to conferences the next time, I delivered the news that no, we would not be medicating him, but I was trying to find a specialist he could meet with to learn coping mechanisms (since apparently they don't teach such things in school). I thought the issue had been settled, but when we recently went back for his annual IEP meeting, the special ed teacher brought it up again, saying she knows where I stand on it, but that she really thinks treating the anxiety would help him in the classroom.
In the very same meeting, his classroom teacher - who is the one that sees him most of the day and has wonderful things to say about him - reported that he's having fewer meltdowns, but seems like he's having more trouble focusing...to which, the special ed teacher commented, "Well, that's the autism." Uh-huh...so you want me to medicate the issue that seems to not be as much of an issue, but there's nothing we can do about the spaciness?? (Needless to say, it became even clearer that we need a professional who is smart about these things.)
Naturally, I found the special ed teacher's push for meds to be irritating and somewhat distracting from the real issue at hand, which was how she planned to help my son in school, but it has since come to my attention that her behavior is actually illegal, seeing as she is not a doctor...which makes it all the more abominable, but still does nothing to help Owen.
(And I want to point out that I'm aware that many kids with autism do need medication and I am not against it as a last resort, but the idea that we would go from zero to pills - against the advice of his pediatrician, no less - is crazy to me. He is seven!)
So anyway, after much searching and calling and waiting, we are seeing a child psychology who specializes in both autism and anxiety on Thursday! And she's covered by our insurance!
I don't want to get my hopes up too high, but I am hoping that she'll be able to help Owen develop the skills to reason his way out of the fear that holds him back. And I'm hoping she can teach us how to help him. I'm just hopeful.
Of course, you didn't actually know we were looking, did you? Because I never mentioned it. The bigger thing I never mentioned was the pressure we've been getting from the special ed teacher at school to put Owen on medication for anxiety.
The first time she mentioned it was at fall conferences. I was caught off guard, having never had anyone describe his behavior as signs of anxiety. I've since learned more about the anxiety that comes with autism and would have to agree that Owen's meltdowns do look a lot like anxiety. But medication still seemed like a big step, so I consulted his pediatrician who said there was no evidence that medication would be a good long-term solution for Owen and that, unfortunately, "some teachers like to make things easier for themselves."
So I started looking for a specialist and found that most of them had mile-long waiting lists and didn't take our insurance. When we went back to conferences the next time, I delivered the news that no, we would not be medicating him, but I was trying to find a specialist he could meet with to learn coping mechanisms (since apparently they don't teach such things in school). I thought the issue had been settled, but when we recently went back for his annual IEP meeting, the special ed teacher brought it up again, saying she knows where I stand on it, but that she really thinks treating the anxiety would help him in the classroom.
In the very same meeting, his classroom teacher - who is the one that sees him most of the day and has wonderful things to say about him - reported that he's having fewer meltdowns, but seems like he's having more trouble focusing...to which, the special ed teacher commented, "Well, that's the autism." Uh-huh...so you want me to medicate the issue that seems to not be as much of an issue, but there's nothing we can do about the spaciness?? (Needless to say, it became even clearer that we need a professional who is smart about these things.)
Naturally, I found the special ed teacher's push for meds to be irritating and somewhat distracting from the real issue at hand, which was how she planned to help my son in school, but it has since come to my attention that her behavior is actually illegal, seeing as she is not a doctor...which makes it all the more abominable, but still does nothing to help Owen.
(And I want to point out that I'm aware that many kids with autism do need medication and I am not against it as a last resort, but the idea that we would go from zero to pills - against the advice of his pediatrician, no less - is crazy to me. He is seven!)
So anyway, after much searching and calling and waiting, we are seeing a child psychology who specializes in both autism and anxiety on Thursday! And she's covered by our insurance!
I don't want to get my hopes up too high, but I am hoping that she'll be able to help Owen develop the skills to reason his way out of the fear that holds him back. And I'm hoping she can teach us how to help him. I'm just hopeful.
Saturday, May 22, 2010
No Thanks
I feel like over the past four years since Owen's diagnosis, I've gone through the fear and anger and all the standard emotions, and I've arrived at a place where it's just part of our lives and usually it doesn't bother me that much. I don't curse autism daily for making my baby's life harder than it needs to be. He's healthy and happy and we're lucky for that.
So I was a little caught off guard this week when we got called into a meeting where the school informed us that even though Owen is smart - really, really smart - they think that his difficulty with expressing himself through writing (and the subsequent meltdowns it causes) will pose too much of a challenge for him to enter into the gifted program next year.
The truth is that we had the same reservations and hadn't even submitted his application to the program until we got his phenomenal test scores back. And yet...having the school tell me that put me on the defensive. It's not fair. His amazing mind is in there working away, but he just can't write a paragraph about it. (Well, he maybe could, but it's hard enough that he doesn't want to and will tell you so.)
And it made me mad, like something was being taken away from him. Like autism is taking something away from him. And I haven't felt that way for a long time.
And then I felt a little bit greedy because I know how lucky we are. Like the me from four years would be telling me to be grateful because it could be so much worse. I should be happy that he is doing so well. I should be happy that we're even talking about the gifted program. And I am.
But should I really feel grateful? Grateful that this mysterious disorder hasn't taken more from him? Like it's some penance and he's getting off easy? No.
I've come a long way, but I'm not ready to thank autism for anything.
Friday, February 5, 2010
Report Cards
It's report card time. Report card time with six-year-olds is decidedly less stressful than report card time with teenagers.
I put very little weight on my boys' report cards. It's not that I'm not interested in how they're doing in school, it's more that I don't feel like their ability to measure up against narrowly-defined standards is an indicator of future success in life (although I suppose that's pretty much exactly the way to succeed in corporate America). Maybe I'll feel differently when/if they are really being challenged in school, but right now we're just happy that they aren't complaining of being bored.
Anyway, the grades aren't the interesting part of the report cards, it's the teacher comments. My favorite this time around: "Aidan is currently working on being able to locate supplies in his desk and keeping his shoes tied." Doesn't that just sound like the makings of a mad professor?
Then there's Owen, whose teacher wrote: "I LOVE Owen...he has the greatest personality!" Ok, now, I know I shouldn't be cynical because his teacher has been very accommodating and yes, he does have a the greatest personality...but, well, don't you usually make the personality comment when you're trying to avoid mentioning the thing you don't like about someone?
I don't know, it's possible that given autism's natural tendency to provide a rather uphill slope for kids to traverse, she's overcompensating by saying only nice things. I mean, I know full well that he sometimes outright refuses to do his work and yet here it's phrased as "I would also like to see him finish his work." Well, me too, but rather than wishing for things, let's talk about how we can make that happen.
Enthusiasm: A+
Insight: D-
Wednesday, November 11, 2009
Unwritten
We had parent/teacher conferences on Monday. Interesting thing: they are both doing great in their separate classrooms - excelling in reading and math - but they both need to work on their handwriting.
Aidan's writing is just messy because his brain works faster than his hand, so we need to work on getting him to slow down enough for it to be legible.
Owen, on the other hand, just doesn't want to do it. He hates the act of writing. This seems to be his only major source of meltdowns in the classroom. He can write - it's actually one of the few things he mastered before Aidan did - he just doesn't like it and has been refusing to do it. We think part of it is that he struggles to form his ideas into words, but thanks to this uncannily-timed story from NPR, it turns out that it might also be that the physical act of it is more difficult than we realized.
As a parent of a child with a disorder so confusing and mysterious, I can't tell you how exciting it is to read an article about it and actually go, "That's our situation! That's Owen!" Of course, the story doesn't exactly offer solutions, but even just identifying it as a common issue is helpful (mentally, at least). I am anxious to see if teaching him to type could help him get over the handwriting hurdle and let him focus on learning alongside his peers.
Because seriously, if writing turned out to be his biggest obstacle in school, well...I could deal with that.
Labels:
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parenting,
public school
Saturday, November 7, 2009
Let There Be Health
My house was a sick bay all week. The illness started on Halloween, but I was in denial until the day after Halloween when the fevers arrived.
At first I held out hope that the kids would be back in school by Tuesday, but the illness wanted nothing to do with that plan. The school nurse called us on Monday to ask about symptoms (she's trying to keep track) and let us know that 13% of the school was absent. Tuesday night we got word from Aidan's teacher via email that 60% of his classroom was out sick.
On Wednesday, I decided to try sending Owen to school. His fever was gone and he seemed much improved, but alas, he was returned to us midday by the school nurse, who always manages to imply that you should have known better when informing you that you need to come get your child. He didn't have a fever, but his cough had magically grown worse since boarding the school bus that morning and by the time he got back home he sounded like an 80-year-old chain smoker.
Having listened to the school nurse list the smorgasbord of maladies floating around the school - flu, strep, stomach virus, lice, even two cases of pneumonia - we decided to give up on school for the week. By Friday, I was so used to the boys being home that I forgot to call them in sick.
I'm not really looking forward to sending them back to the petri dish on Monday...I'd much prefer that they shut the school down for two weeks, give everyone time to recover, hose the place down with Purell, and then basically start over. I know we'd all get sick again eventually, but I'd just like a break. I have to imagine that the poor teachers would like one, too. And maybe, just maybe, if the schools were closed, employers would have to be a little more lenient in letting parents stay home, or work from home, or something, and then maybe fewer adults would be getting sick, too.
And then we would all join hands, sing kumbaya and achieve world peace...or, you know, something really good like that.
Saturday, October 17, 2009
The fantasy in which I never have to go to another parent-teacher conference
I read this post about homeschooling today and was struck.
Pretty much anyone who has had a discussion with me about Owen and school has heard me proclaim that if I can't make it work within the school system, I'll yank him out and homeschool him. (I have an accompanying fantasy in which we become a traveling family and they learn as we see the world together.)
Although I generally say this half-jokingly, I do actually mean it. It's not that I necessarily think I'd be great at it, it's more that I suspect that in order to work to his potential, Owen (and Aidan, to some extent) will need the kind of attention that can only come from someone who is actually invested in the outcome. There's no doubt that he can learn. I'm just not convinced that he will thrive in a typical classroom with a teacher who is pulled in 20 different directions and rules that place far more emphasis on compliance than comprehension.
Usually when I begin down this path of reasoning with my friends, many of them are quick to point out the commonly held impressions of home-schooled kids. That they are weird and/or maladjusted to society. I might be concerned about that if my kids weren't already little weirdos and if society didn't already seem like our enemy so much of the time.
Still, it's not a decision I would make lightly. In fact, I hope that we can make public school work, not just for my sanity, but because I do think they could both benefit from the socialization aspect.
But homeschool is always there, in my mind, as an option. And it's both comforting and encouraging to hear that it works so well for some.
Labels:
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autism,
boys,
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This Mom
Monday, September 21, 2009
Progress
My boys came home from school with a very exciting letter from the principal today. The key excerpt:
We want our students to have the opportunity to learn more about each other. Through an education foundation grant and financial support from our Student Services Department, a brief seven lesson curriculum was developed to help all students better understand the unique challenges and learning characteristics of students on the Autism Spectrum. Throughout the next several months your child will participate in these lessons as part of their classroom curriculum.
Maybe I'm overreacting, but I'm so happy that I could cry. There is so much we all still have to learn about autism, but giving kids a basic understanding of the disorder from an early age could go such a long way in creating a culture of support and acceptance. It could make my little Owen's life so much better both in school and in the long-run.
This is important. It's the right thing to do. And it came from the public school system that I deeply mistrust. I am happily surprised and look forward to being proven wrong again and again.
Thursday, April 23, 2009
Be Serious
We got the revisions to Owen's IEP today. One of his short term objectives reads as follows:
"Owen will be able to to have one or less reminders of not being silly when the situation calls for listening to instructions 75% of the time."
Do you think that if the situation calls for listening to instructions only 50% of the time, then he'll get two reminders?
But really, questionable grammar aside, I can't help but wonder how many typical five- and six-year-olds could have this listed as an objective, were they scrutinized the way Owen is.
I'm not saying he couldn't use some work in the listening department - he definitely could - I think I'm just reacting to this idea that him being silly is the issue. As if silliness is this obstacle he must overcome.
Do we send our kids to school to make them less silly? Is that an educational objective?
Thursday, April 2, 2009
It's World Autism Awareness Day
Today is World Autism Awareness Day. What can you do to help spread awareness?
Here in the Twin Cities, families are rallying at the Capitol in support of several autism-related bills, including insurance reform and a bill that would establish a task force to limit the use of seclusion and restraints in the public school system - a practice I've mentioned before that scares the hell out of me.
Sadly, I will not be attending any rallies today. Instead, I will be driving down to Viroqua, Wisc. with my mother, to say goodbye to my estranged grandmother, who just had a stroke, and begin the terrifying process of cleaning out her house...where she's lived alone for 15 years...collecting stray animals. I am shuddering at the thought.
I will be back tomorrow and it would be such a nice surprise to find out that, in my absence, Team Owen met its goal. You can help! Thanks to everyone who has already donated - it's not too late for the rest of you. Don't make me pull out that Alicia Keys video again...wow, that thing made me cry.
Happy World Autism Awareness Day, everyone. Let's all try to help just one person learn one thing about autism today. For more information, visit Autism Speaks.
Monday, March 23, 2009
Distracted Genius
So, April is Autism Awareness Month. I realize that we still have 8 days left of March, but I didn't want it to sneak up on you...My goal this April is to include a fact or story or educational tidbit about autism in every blog post for the month. That doesn't mean that I'll only blog about autism next month, just that all my blogs will contain a note in recognition of Autism Awareness Month.
Feel like joining me? The more people we can educate, the better the world will be for my little Owen and everyone living with autism.
Speaking of Owen, today was the big 3-Year IEP Reevaluation Meeting.
First of all, I just want to say how much it annoys me that these meetings are always so f*ing disorganized. It's not like this is a party planning committee or a casual get-together with friends. Note to public school system: When I walk into a room of supposed "experts" to hear what you have to say about my son and his educational future, I expect you to have your shit together. This includes actually reading what it is that you contributed to the report so that you can speak about it intelligently rather than reading it verbatim (grammatical errors and all) off the sheet of paper I have in front me.
Alright, now that I've gotten that off my chest, I should say that overall the meeting was good. Or, at least, the information given at the meeting was good. He aced the Wechsler Preschool and Primary Scales of Intelligence test (phonetically known as the "wipsy" by educators). As we've known for years, the kid is a genius, only now he's got a documented IQ score of 125 to prove it. (Alright, if you want to get technical, a 125 is actually just the "very superior intelligence" level, not "genius," but whatever.) The psychologist who administered the test added that she thinks his score might really be higher, but by the end he was tired and distracted, so he didn't score as high on the final sections.
The gist of the meeting was the usual: He is brilliant and he is socially awkward and has trouble focusing. How will all of this play out as he gets older? That remains to be seen. He will continue to get social skills support. We will continue to work with him on when he has to exert every ounce of his energy on focusing and when it's okay to relax and be silly (or stare off into space). We will try to help him learn to interpret facial expressions so as to avoid some of the embarrassing and awkward situations that such misunderstandings can cause. We will just keep doing everything we can and maybe the school's well-meaning, yet sorely underfunded and understaffed efforts will help a little too.
All I can hope is that no matter how hard it becomes to navigate the social structures and classroom dynamics as he gets older, he can hold onto the knowledge that he is exceptional and always will be. And that we love him just the way he is.
For more information on autism or to find out more about Autism Awareness Month, visit the Autism Speaks website.
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Wednesday, March 11, 2009
3 Years in 30 Minutes or Less
It's time for Owen's tri-annual (that means every three years, right?) Special Education review...that's probably not the official name, but it's basically the school district saying, "Hey, it's been three years since we really looked at why we're giving this kid services, let's test him some more." They do annual IEP reviews already, plus we meet with all of his teachers at conferences, so I'm not totally sure what the purpose of this review is, but it seems reasonable to me that they would review his services and his educational diagnosis as he gets ready to become a (gasp) first grader next year.
As part of this review, I have to be interviewed by the school social worker about his development. According to said social worker, I'm supposed to tell her about his development over the last three years. So basically ever since he got diagnosed...I am feeling a bit overwhelmed by this, which maybe subconsciously is why I somehow keep scheduling this interview at bad times and then having to call and reschedule it. But I think it will happen today, finally.
This gets at my issue with the fact that so much of the diagnosis and treatment of autism relies on the parents' ability to remember and articulate every development, delay, concern, and quirk. I'm not blaming anyone for this - it's simply where we are in our understanding of the autism spectrum - but, as the parent of a kid with autism, it's kind of a lot of pressure.
Autism is part of our everyday lives. I don't consider it an everyday struggle because it's our "normal." We're used to it, we know how to work with it, we know how to help Owen avoid meltdowns or come out of them when they happen. We don't always like autism, but it's part of us in such a way that makes it difficult to stand back and analyze, or explain to someone else...especially someone who doesn't know us.
So what if I don't mention something important because it doesn't seem like a big deal to me? What if I've forgotten yet another important milestone (seriously, with twins, it all becomes a blur). I think he's doing great. He is happy. He reads at a second grade level. He is funny. He is silly - sometimes too silly. Is there a special program to help him stop being too silly at school?
I know they don't expect me to know what he needs, but I don't fully trust them to know either. I don't feel that the the special services he's been getting this year have made any difference (good or bad) for Owen. Does that mean he needs more services or less? I don't know. Should I go into this interview with an agenda one way or the other? Would it help me sort out everything I'm supposed to remember from the last 3 years?
As usual, I suppose all I can do is try my best and hope that it's enough.
Labels:
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autism,
boys,
IEP,
public school,
special education
Thursday, December 18, 2008
Horror in the Classroom
My cyber-friend Judith brought this CNN article to my attention today. It’s about the use of seclusion or “quiet” rooms in the school system. These rooms are used for kids who are deemed “disruptive” – often these kids have autism.
This article talks about a 13-year-old boy who hanged himself while locked in one of these rooms. His parents didn’t even know the room existed, let alone that their son was repeatedly being left in there alone when he should have been being educated. The school didn’t tell them because, legally, they didn’t have to…because there are little-to-no regulations about the use of these rooms.
The article reminded me of this New York Times story, “Calm Down or Else,” which discussed the mostly-unregulated use of restraints in school for kids deemed disruptive. Several kids have been accidentally suffocated because they were restrained for so long.
Again, many of these kids have autism – some of them can’t even speak, so not only can they not defend themselves, they can’t go home and tell anyone what is happening to them.
Aside from my obvious horror, my reaction to these stories is always, Thank goodness Owen isn’t violent. Thank goodness he can talk. But isn't there something wrong with that? That I'm thankful he'd at least be able to tell me if he was being mistreated?
And even though Owen isn't violent, he does scream sometimes. He has meltdowns. He’s been known to flail a little when he gets really mad. What if one of his meltdowns happened to coincide with a teacher’s really bad day? What if he just pushed her over the edge in that particular minute and she reacted just a little too severely? What if my little boy was thrown into a locked room, alone, and left to sit for hours on end?
Kids are being abused and killed at school. At the hands of the people their parents are trusting to educate them. Yes, teachers are under-trained and overworked and have too many kids to keep track of, but it’s not okay.
I completely understand that all children deserve to learn in an environment without constant disruption. I wouldn’t want one student taking up my boys’ teacher’s attention the whole day, either, but come on. There has to be a better way. There have to be rules and regulations. At the very, very least, a parent should have to be told each and every time a restraint is used or their child is send to a quiet room.
My boys’ school has a quiet room. They told us about it at the beginning of the year (if you read the CNN article, you’ll note that many schools don’t tell anyone about these rooms). The teachers send kids there when they get in trouble or if they need extra time to finish their work. Owen got sent there once because he didn’t finish his work on time. I didn’t find out about it until more than a week later when he happened to mention it.
Having already read that NY Times article, I panicked. I spoke to his teacher and asked why and when and how often he had been sent there. More importantly, why wasn’t I told? She told me that he had only been sent there once and it wasn’t because he was in trouble. She said that if he had been sent there for a behavior issue, I would have been told. He hasn’t been sent back since.
Aside from being vigilant with our own kids, what else can we do? I don’t know, but there has to be something. No one should have to fear that their children are being abused at school.
This article talks about a 13-year-old boy who hanged himself while locked in one of these rooms. His parents didn’t even know the room existed, let alone that their son was repeatedly being left in there alone when he should have been being educated. The school didn’t tell them because, legally, they didn’t have to…because there are little-to-no regulations about the use of these rooms.
The article reminded me of this New York Times story, “Calm Down or Else,” which discussed the mostly-unregulated use of restraints in school for kids deemed disruptive. Several kids have been accidentally suffocated because they were restrained for so long.
Again, many of these kids have autism – some of them can’t even speak, so not only can they not defend themselves, they can’t go home and tell anyone what is happening to them.
Aside from my obvious horror, my reaction to these stories is always, Thank goodness Owen isn’t violent. Thank goodness he can talk. But isn't there something wrong with that? That I'm thankful he'd at least be able to tell me if he was being mistreated?
And even though Owen isn't violent, he does scream sometimes. He has meltdowns. He’s been known to flail a little when he gets really mad. What if one of his meltdowns happened to coincide with a teacher’s really bad day? What if he just pushed her over the edge in that particular minute and she reacted just a little too severely? What if my little boy was thrown into a locked room, alone, and left to sit for hours on end?
Kids are being abused and killed at school. At the hands of the people their parents are trusting to educate them. Yes, teachers are under-trained and overworked and have too many kids to keep track of, but it’s not okay.
I completely understand that all children deserve to learn in an environment without constant disruption. I wouldn’t want one student taking up my boys’ teacher’s attention the whole day, either, but come on. There has to be a better way. There have to be rules and regulations. At the very, very least, a parent should have to be told each and every time a restraint is used or their child is send to a quiet room.
My boys’ school has a quiet room. They told us about it at the beginning of the year (if you read the CNN article, you’ll note that many schools don’t tell anyone about these rooms). The teachers send kids there when they get in trouble or if they need extra time to finish their work. Owen got sent there once because he didn’t finish his work on time. I didn’t find out about it until more than a week later when he happened to mention it.
Having already read that NY Times article, I panicked. I spoke to his teacher and asked why and when and how often he had been sent there. More importantly, why wasn’t I told? She told me that he had only been sent there once and it wasn’t because he was in trouble. She said that if he had been sent there for a behavior issue, I would have been told. He hasn’t been sent back since.
Aside from being vigilant with our own kids, what else can we do? I don’t know, but there has to be something. No one should have to fear that their children are being abused at school.
Labels:
ASD,
autism,
boys,
CNN,
New York Times,
parenting,
public school,
quiet rooms,
restraints,
special education
Friday, April 11, 2008
Judgement Day
Yesterday was kindergarten assessment day. The boys have been registered for kindergarten since February, but apparently they put the assessments off until later...seems inefficient, but I'm pretty sure "inefficiency" is one of the public school system's values.
I thought we'd sit down, I'd meet the teacher, she'd ask me some questions about each kid and then she'd quiz them on their letters and numbers. It wasn't quite so chummy. The teacher asked Aidan to come with her without even introducing herself, then brought him into a room with a poster saying "Respect is not a gift. It has to be earned." Really? How might my 4-year-old earn your respect? I know I'm very cynical when it comes to the school system, but it seemed a little inappropriate for a kindergarten setting.
So anyway, Owen and I sat in the hall for 15 minutes until it was time to switch kids. 20 more minutes passed and the teacher emerged to say, "Sorry it took so long, we went through all of the first grade words as well." I'm glad the kids proved their super-geniusness all on their own, but had she bothered to have a 2-minute conversation with me in advance, I could have told her that they both already read beyond a first-grade level. Her only other comment was that Aidan might have trouble sitting still in class...well, at least he's got something to work on.
Let's just say I do not hold high hopes for next year in terms of intellectual development. The good thing is that the kids don't know they should be bored by spending an entire week on one letter of the alphabet. I am looking forward to seeing how Owen does in the classroom with only the support of a para. Ironically, the only pull-out service he'll get next year is social skills. The goal, of course, is that he will no longer need special support when he gets to first grade, but my own quest is to figure out whether he can successfully learn in a system designed for neurotypical kids...really, that's my quest for both of them.
I thought we'd sit down, I'd meet the teacher, she'd ask me some questions about each kid and then she'd quiz them on their letters and numbers. It wasn't quite so chummy. The teacher asked Aidan to come with her without even introducing herself, then brought him into a room with a poster saying "Respect is not a gift. It has to be earned." Really? How might my 4-year-old earn your respect? I know I'm very cynical when it comes to the school system, but it seemed a little inappropriate for a kindergarten setting.
So anyway, Owen and I sat in the hall for 15 minutes until it was time to switch kids. 20 more minutes passed and the teacher emerged to say, "Sorry it took so long, we went through all of the first grade words as well." I'm glad the kids proved their super-geniusness all on their own, but had she bothered to have a 2-minute conversation with me in advance, I could have told her that they both already read beyond a first-grade level. Her only other comment was that Aidan might have trouble sitting still in class...well, at least he's got something to work on.
Let's just say I do not hold high hopes for next year in terms of intellectual development. The good thing is that the kids don't know they should be bored by spending an entire week on one letter of the alphabet. I am looking forward to seeing how Owen does in the classroom with only the support of a para. Ironically, the only pull-out service he'll get next year is social skills. The goal, of course, is that he will no longer need special support when he gets to first grade, but my own quest is to figure out whether he can successfully learn in a system designed for neurotypical kids...really, that's my quest for both of them.
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