Things went pretty smoothly for the first few weeks of school.
I suffered a personal setback when I was laid off from my job and suddenly had to face the pressure of looking for another one again. The very day I was told, I got a call from Ms Margot, just wanting to tell me how much she was enjoying working with Katie and that she was a very sweet little girl. She also said, "I just wanted to tell you, Katie is very proud of the work you do, working with homeless people. She told us all about how you help people who've never even had their own bed before." I broke down crying then, telling her I'd just lost the job Katie was so proud of!
By the end of Sept. Kate started having some conflicts with some classmates and a couple days in a row she came out to the car after school with her backpack held up covering her face like a shield because she didn't want people to see she was crying.
When I talked to her the first day, she told me another girl got mad at her for "just being herself". I asked what just being herself meant, and Katie did admit that she was being kinda goofy (she'd announced that she'd just farted). A girl at her table, Takyra, told Katie she was annoying (BIG trigger word for Kate!!) and went and told the teacher on her. Though the teacher said nothing to her about it, Katie felt herself to be "in trouble" over it and she started to cry (she does any time an adult is brought into things). She said she wished Takyra would have just asked her to stop instead of going to tell the teacher right away.
The next day she came out to the car crying again. This time she'd wanted to read a book Takyra had, and had asked Takyra to let her have it when she finished. Instead Takyra gave it to someone else. Katie confronted her about it, reminding her that she'd asked to have it next and Takyra told her she didn't need to cry over every little thing and to stop being such a baby (another major trigger word!). Kate says she wasn't even crying at first when she was confronting her, it was only "after she said those things" that she'd started to cry, so it wasn't even fair, coz she wasn't even crying! "Ugh, Takyra is so mean!!"
Sunday, November 23, 2014
New Year, New School, New Start
When I first told Katie I was transferring her to another school, she protested for a few minutes, but didn't put up much of a fuss once I explained that this other school would have better ways to help her with all the things that frustrated her last year.
It wasn't long before this theory was tested. Tears on the second day. The teacher brought out a math assessment type test that was just meant to see how far they could get in one minute. Katie got upset and panicked, (she hates timed tests) and was promptly taken to see the school counselor in order to calm down. Ms Margot is a very nice lady who Katie was happy to meet, and this saved her the embarrassment of having her whole class witness her meltdown.
From that moment on, Ms Margot began popping in to check on Kate several times a day. They developed a thumbs-up/thumbs-down system for Katie to silently let Margot know how she's doing without drawing attention. Kate's teacher, Mrs Phillips, responded immediately by allowing Katie to do the tests un-timed and in a separate setting from then on so as not to panic her again.
I don't remember if it was Ms Margot or Mrs Phillips, but one of them called me that very day to tell me what had happened, what they'd done to intervene, and their plans for future incidents. I was so impressed! Again, the relief was so incredible. The fact that they immediately went into action and didn't wait for it to become a pattern was so reassuring. So hopeful!
Though Mr P had encouraged me to write that letter requesting the Special Ed evaluation right away at the beginning of the year, that wasn't quite practical. In order to do the evaluation they really needed to be able to observe her and gather some baseline data before they could launch into full eval. So it was put on hold for a time.
Hayes does have a grant funded program called ADSIS (Alternative Delivery of Specialized Instructional Services) for kids who don't qualify, or have yet to be assessed, for SpEd services. It provides additional academic or behavioral support for struggling kids as needed. Mr Cooper is the Behavioral Intervention Specialist in charge of that program, and while we wait a bit to go forward with the eval, Kate can access the ADSIS services. If Ms Margot is not available at a time Kate needs some support, she can go to Mr Cooper's room for a break.
Further into the year they built into her day two scheduled "sensory" breaks in the morning and afternoon, when she goes to his office for a 10 min break. My intention when suggesting this was that she be given time and space to do some heavy work to help calm and reset her system, but at first she told me she was just going to his room and playing games on a tablet. I have since requested that he have her do something physical instead to get the full benefit if the break.
It wasn't long before this theory was tested. Tears on the second day. The teacher brought out a math assessment type test that was just meant to see how far they could get in one minute. Katie got upset and panicked, (she hates timed tests) and was promptly taken to see the school counselor in order to calm down. Ms Margot is a very nice lady who Katie was happy to meet, and this saved her the embarrassment of having her whole class witness her meltdown.
From that moment on, Ms Margot began popping in to check on Kate several times a day. They developed a thumbs-up/thumbs-down system for Katie to silently let Margot know how she's doing without drawing attention. Kate's teacher, Mrs Phillips, responded immediately by allowing Katie to do the tests un-timed and in a separate setting from then on so as not to panic her again.
I don't remember if it was Ms Margot or Mrs Phillips, but one of them called me that very day to tell me what had happened, what they'd done to intervene, and their plans for future incidents. I was so impressed! Again, the relief was so incredible. The fact that they immediately went into action and didn't wait for it to become a pattern was so reassuring. So hopeful!
Though Mr P had encouraged me to write that letter requesting the Special Ed evaluation right away at the beginning of the year, that wasn't quite practical. In order to do the evaluation they really needed to be able to observe her and gather some baseline data before they could launch into full eval. So it was put on hold for a time.
Hayes does have a grant funded program called ADSIS (Alternative Delivery of Specialized Instructional Services) for kids who don't qualify, or have yet to be assessed, for SpEd services. It provides additional academic or behavioral support for struggling kids as needed. Mr Cooper is the Behavioral Intervention Specialist in charge of that program, and while we wait a bit to go forward with the eval, Kate can access the ADSIS services. If Ms Margot is not available at a time Kate needs some support, she can go to Mr Cooper's room for a break.
Further into the year they built into her day two scheduled "sensory" breaks in the morning and afternoon, when she goes to his office for a 10 min break. My intention when suggesting this was that she be given time and space to do some heavy work to help calm and reset her system, but at first she told me she was just going to his room and playing games on a tablet. I have since requested that he have her do something physical instead to get the full benefit if the break.
Misunderstanding SPD Kids
One thing I can say as a parent of a sensational kid is that it's easy to incur the judgement of other parents. Looking at some of the behaviors of some of our kids, some people just see brats. In Miller's example, LaTanya's teacher Miss Sorensen "doesn't say so, but she thinks the real problem with the girl is that her parents aren't strict enough and fail to make LaTanya do what she should".
I know for a fact that Katie's father and his wife have thought this of me many times over the years. Much of the time when Katie is at their house for the weekend she controls a lot of her behavior out of intimidation. She can hold it together for 48 hours if she isn't pressed too hard, but at home, where she feels safe, all that pent up "stuff" comes pouring out and we have some tough Sunday nights sometimes. Her dad thinks I baby Katie and let her get away with too much. I know it can look that way from the outside.
The problem is that this holds a child with a disability (man, it's still not easy to say that about my own child) to the expectations of a typically developing child, and it's just not the same. They aren't playing with the same equipment. "Humans typically use reason to override reflexive behavior- thinking through situations in order to avoid getting to the 'fight/flight' mode unnecessarily. The problem for (Katie) is that her 'fight/flight' response occurs so fast she doesn't have time to cancel it out with reason. As a result, she (reacts) to situations that aren't really dangerous". (Miller, Sensational Kids)
When someone calls a typically developing kid a name, that kid can stop and think "Oh that's just Mikey- he's always causing trouble" and brush it off, but, when someone calls Katie a name, she immediately reacts in a way that is beyond what is expected in the situation, because she doesn't have time to apply reason the way we'd expect someone her age to. So she looks like a brat. Her behavior seems babyish. She looks like a spaz, a freak, a weirdo. She doesn't want to respond this way, it's just the way she's wired!
I know for a fact that Katie's father and his wife have thought this of me many times over the years. Much of the time when Katie is at their house for the weekend she controls a lot of her behavior out of intimidation. She can hold it together for 48 hours if she isn't pressed too hard, but at home, where she feels safe, all that pent up "stuff" comes pouring out and we have some tough Sunday nights sometimes. Her dad thinks I baby Katie and let her get away with too much. I know it can look that way from the outside.
The problem is that this holds a child with a disability (man, it's still not easy to say that about my own child) to the expectations of a typically developing child, and it's just not the same. They aren't playing with the same equipment. "Humans typically use reason to override reflexive behavior- thinking through situations in order to avoid getting to the 'fight/flight' mode unnecessarily. The problem for (Katie) is that her 'fight/flight' response occurs so fast she doesn't have time to cancel it out with reason. As a result, she (reacts) to situations that aren't really dangerous". (Miller, Sensational Kids)
When someone calls a typically developing kid a name, that kid can stop and think "Oh that's just Mikey- he's always causing trouble" and brush it off, but, when someone calls Katie a name, she immediately reacts in a way that is beyond what is expected in the situation, because she doesn't have time to apply reason the way we'd expect someone her age to. So she looks like a brat. Her behavior seems babyish. She looks like a spaz, a freak, a weirdo. She doesn't want to respond this way, it's just the way she's wired!
More Insight: IEP language and Heavy Work
More from the chapter in Miller's book, Sensational Kids:
Discussing school adaptations, LaTonya has "an Individualized Educational Plan (IEP) stating that she has sensory problems causing her to have behavioral issues that hurt her academic performance". I took note of the specific wording here for possible use in Katie's plan. "The plan contains specific objectives, and one of these is to calm her overreactivity so she can pay attention in class". Again, wording that could apply specifically to Katie.
Miller goes on to discuss a particular intervention of heavy work used in LaTanya's case "for calming her overalert sensory system and recharging her batteries for the big challenge of the classroom". In this case, LaTanya goes to the library every morning and carries a load of heavy books to her classroom- one example of heavy work. I wonder if such a scheme would be helpful for Kate too?
Miller defines Heavy Work here as "a term applied to any activity that engages the muscles and joints of the proprioceptive system". She had previously explained the stimulating the proprioceptive sense can generate calming messages to the brain. "Tasks that engage more or bigger muscles generally create greater proprioceptive stimulation and have the biggest effect on behavior".
"In (Occupational) therapy, children are taught to recognize when they need heavy work and to generate it for themselves with activities such as pushing against a wall or another resistant surface, pulling a heavy load like a wagon with another child as passenger, or walking up a flight of stairs". Miller says that "heavy work tends to lower arousal levels and reduce cumulative effect so that the child is prepared for the next sensory surprise." and "Heavy work for LaTanya (and Katie) is the equivalent of finding the volume button on the background noise that is always buzzing in her sensory system and turning it down."
Interesting note here, on one of Kate's visits to her therapist, the blinking tic was particularly bad and the therapist decided to try some heavy work. She had Katie plant her feet and push hard against the wall, as if trying to push it over, and then gave her a squeeze ball and had her squeeze it as hard as she could for as long as she could hold it. She reported to me later that after this the tic was gone and did not return for the rest of their session! Hmmm, something to think about....
Discussing school adaptations, LaTonya has "an Individualized Educational Plan (IEP) stating that she has sensory problems causing her to have behavioral issues that hurt her academic performance". I took note of the specific wording here for possible use in Katie's plan. "The plan contains specific objectives, and one of these is to calm her overreactivity so she can pay attention in class". Again, wording that could apply specifically to Katie.
Miller goes on to discuss a particular intervention of heavy work used in LaTanya's case "for calming her overalert sensory system and recharging her batteries for the big challenge of the classroom". In this case, LaTanya goes to the library every morning and carries a load of heavy books to her classroom- one example of heavy work. I wonder if such a scheme would be helpful for Kate too?
Miller defines Heavy Work here as "a term applied to any activity that engages the muscles and joints of the proprioceptive system". She had previously explained the stimulating the proprioceptive sense can generate calming messages to the brain. "Tasks that engage more or bigger muscles generally create greater proprioceptive stimulation and have the biggest effect on behavior".
"In (Occupational) therapy, children are taught to recognize when they need heavy work and to generate it for themselves with activities such as pushing against a wall or another resistant surface, pulling a heavy load like a wagon with another child as passenger, or walking up a flight of stairs". Miller says that "heavy work tends to lower arousal levels and reduce cumulative effect so that the child is prepared for the next sensory surprise." and "Heavy work for LaTanya (and Katie) is the equivalent of finding the volume button on the background noise that is always buzzing in her sensory system and turning it down."
Interesting note here, on one of Kate's visits to her therapist, the blinking tic was particularly bad and the therapist decided to try some heavy work. She had Katie plant her feet and push hard against the wall, as if trying to push it over, and then gave her a squeeze ball and had her squeeze it as hard as she could for as long as she could hold it. She reported to me later that after this the tic was gone and did not return for the rest of their session! Hmmm, something to think about....
Reviewing Katie's Sensory Issues
So, as I read through the chapter on the day in the life of a sensory over-responsive kid (LaTanya) in Lucy Jane Miller's excellent book, Sensational Kids, I recalled/learned/summarized these facts/observations about Katie:
Specifically, the type of problem Kate most struggles with is Sensory Modulation Disorder (SMD), which "makes it hard for her to match the intensity of her responses to the intensity of the sensations she feel". Her system "cannot filter sensations in a way that would allow her to come up with an appropriate response" so when she is "alerted" to a sensation, her brain goes immediately to fight/flight/freeze mode.
Miller writes, "Parents of children with sensory over-responsivity tell me that they feel they're constantly tiptoeing through a minefield- always braced for the next event that will trigger a crisis", and that is precisely my experience.
Also, "A typically developing child gets a sensory message such as the big bang of a slamming door, figures out the cause, and lets it go. In children with sensory problems, this ability to let go of past messages sometimes appears to be impaired, leading to a 'backlog' of sensation that accumulates until it overwhelms the child's coping skills" and "It is believed that the cumulative effect of undisposed sensory messages is what causes children with SPD to eventually fall apart over triggering events that are minor". What if the reason Kate loses it when another kid calls her a name is a whole morning's worth of sensory alerts she hasn't been able to let go of?
Miller goes on to describe how "LaTanya" is alerted by the overwhelming fumes of the school bus, the typical noisiness of an elementary school bus, and the inadvertent touching and jostling by other kids that happens on the bus. Not to mention the sensation of the motion of the bus and its frequent stops and starts, and unexpected, loud traffic noises outside, such as sirens and honking horns. Little wonder if she prefers to sit in the front seat to minimize some of these, and have visual cues to warn her of upcoming sensations. But sadly, in the example, the other kids won't always let her sit where she's most comfortable, and she is often reduced to tears. "If LaTanya needed a wheelchair or had another physical limitation that made it hard for her to function on the bus, accommodations like an assigned seat would have been made for her long ago. However, because her handicap is invisible, accommodations are made on a spot basis and only after she falls apart, which just confirms everyone's opinion that this is a kid with big problems." (my emphasis)
What if Katie is experiencing these same things, and arriving at school already so overstimulated that her system can't calm down enough to focus on the tasks at hand? How much of what looks like ADHD behavior is actually her inability to take anything more in or process the information in the right part of the brain because she is so consumed with sensory overload?
Specifically, the type of problem Kate most struggles with is Sensory Modulation Disorder (SMD), which "makes it hard for her to match the intensity of her responses to the intensity of the sensations she feel". Her system "cannot filter sensations in a way that would allow her to come up with an appropriate response" so when she is "alerted" to a sensation, her brain goes immediately to fight/flight/freeze mode.
Miller writes, "Parents of children with sensory over-responsivity tell me that they feel they're constantly tiptoeing through a minefield- always braced for the next event that will trigger a crisis", and that is precisely my experience.
Also, "A typically developing child gets a sensory message such as the big bang of a slamming door, figures out the cause, and lets it go. In children with sensory problems, this ability to let go of past messages sometimes appears to be impaired, leading to a 'backlog' of sensation that accumulates until it overwhelms the child's coping skills" and "It is believed that the cumulative effect of undisposed sensory messages is what causes children with SPD to eventually fall apart over triggering events that are minor". What if the reason Kate loses it when another kid calls her a name is a whole morning's worth of sensory alerts she hasn't been able to let go of?
Miller goes on to describe how "LaTanya" is alerted by the overwhelming fumes of the school bus, the typical noisiness of an elementary school bus, and the inadvertent touching and jostling by other kids that happens on the bus. Not to mention the sensation of the motion of the bus and its frequent stops and starts, and unexpected, loud traffic noises outside, such as sirens and honking horns. Little wonder if she prefers to sit in the front seat to minimize some of these, and have visual cues to warn her of upcoming sensations. But sadly, in the example, the other kids won't always let her sit where she's most comfortable, and she is often reduced to tears. "If LaTanya needed a wheelchair or had another physical limitation that made it hard for her to function on the bus, accommodations like an assigned seat would have been made for her long ago. However, because her handicap is invisible, accommodations are made on a spot basis and only after she falls apart, which just confirms everyone's opinion that this is a kid with big problems." (my emphasis)
What if Katie is experiencing these same things, and arriving at school already so overstimulated that her system can't calm down enough to focus on the tasks at hand? How much of what looks like ADHD behavior is actually her inability to take anything more in or process the information in the right part of the brain because she is so consumed with sensory overload?
Self-Regulation Stragtegies for Children Autism, ADHD, and Sensory Disorders
When I came across registration information for the above titled seminar, I knew immediately that I had to attend! This would be a whole day of discussion with a true expert and could help me personally as well as with info for my thesis paper.
It was scheduled for mid-July, so in early July I got out a bunch of my SPD related books and started rereading them so I would have all the info fresh in my mind. As I did so I began to seriously question myself as a mother, wondering if I had discounted sensory issues Katie might still be experiencing that just weren't as obvious as they used to be.
In her book, Sensational Kids: Hope and Help for Children with Sensory Processing Disorder (SPD), leading researcher Lucy Jane Miller describes a day in the life of a sensory over-responsive child. As I read through this, I found myself repeatedly thinking, "My god, what if Katie is experiencing that too, and just doesn't know how to say so?" When she was very young it was easy to see when Kate's senses were overloaded because she over-reacted violently, screaming and panicking. What if, now that she's older, she's still being triggered by tons of things in the environment, but internalizes it instead of acting out the way she used to? I had just kind of assumed that a lot of these things weren't a problem for her anymore, but what if they were? What if these were the underlying roots of her struggles at school? I felt like an idiot for having dismissed it all, and began looking at her in a whole new light as I reread my books and attended the conference.
The conference was very good, by the way. Sponsored by Pesi, it featured Teresa Garland, MOT, OTR speaking to and with us about the techniques laid out in her new book, Self-Regulation Interventions and Strategies: Keeping the Body, Mind & Emotions on Task in Children with Autism, ADHD or Sensory Disorders. This is an excellent resource for parents and others with lots of simple practical ideas.
It was scheduled for mid-July, so in early July I got out a bunch of my SPD related books and started rereading them so I would have all the info fresh in my mind. As I did so I began to seriously question myself as a mother, wondering if I had discounted sensory issues Katie might still be experiencing that just weren't as obvious as they used to be.
In her book, Sensational Kids: Hope and Help for Children with Sensory Processing Disorder (SPD), leading researcher Lucy Jane Miller describes a day in the life of a sensory over-responsive child. As I read through this, I found myself repeatedly thinking, "My god, what if Katie is experiencing that too, and just doesn't know how to say so?" When she was very young it was easy to see when Kate's senses were overloaded because she over-reacted violently, screaming and panicking. What if, now that she's older, she's still being triggered by tons of things in the environment, but internalizes it instead of acting out the way she used to? I had just kind of assumed that a lot of these things weren't a problem for her anymore, but what if they were? What if these were the underlying roots of her struggles at school? I felt like an idiot for having dismissed it all, and began looking at her in a whole new light as I reread my books and attended the conference.
The conference was very good, by the way. Sponsored by Pesi, it featured Teresa Garland, MOT, OTR speaking to and with us about the techniques laid out in her new book, Self-Regulation Interventions and Strategies: Keeping the Body, Mind & Emotions on Task in Children with Autism, ADHD or Sensory Disorders. This is an excellent resource for parents and others with lots of simple practical ideas.
New Hope
Through all our frustration over the last school year, Katie's therapist had repeatedly mentioned services she knew were available at Hayes Elementary school. Over the summer I debated with myself what to do for Katie. Maybe the struggles we faced last year were the natural reaction to adjusting to a new school, on top of having a less than understanding homeroom teacher, and perhaps this year would be better with a different set of teachers and the 504 plan in place that I could have beefed up to suit her needs more specifically. But I really didn't think switching classrooms for almost every class (like in a middle school) was a very good fit for Katie, and I was seriously underwhelmed by the provision of services so far.
So when schools brought back some of their staff in Aug. I made a couple calls to see what our other options might be. It turned out Hayes was not in our home district after all, so I would have to open-enroll her if I wanted her there.
I called Hayes and was transferred to the director of SpEd services, explained that my daughter had needs I didn't feel were being met by her current school and asked if she could tell me, in general, what kinds of services their school offered for the types of struggles I described. With only a brief description from me, the woman was able to tell me several things that might be possible, more that Valentine Hills had offered in a whole year. With this and the therapist's recommendation, it was clear that this would be a better fit for Katie, even if it did mean changing schools again.
I stopped by the school that evening to fill out the papers for the open-enrollment into another district. When I walked into the office I identified myself as the mother who'd called earlier and the secretary remembered and asked if I'd been able to get my questions answered talking to the SpEd director. I assured her that in 10 minutes of conversation I had been convinced this would be a better alternative for us.
There was a man also standing around in the office who overheard this and casually asked me where we were coming from and what struggles we'd been having. I told him a little about Katie and some of her needs, and I don't remember the specific wording/term he used, but he said something like, "Oh yeah, XYZ can really be an important piece for sensitive kids.", and whatever the term was, something sensory related, it was exactly the right thing for what I was describing. Something specific to sensory processing issues that the general person wouldn't know about. I was pleasantly surprised!
I was even more impressed when he proceeded to introduce himself as Mr. P, the principal of the school! I knew right there that this school "get's it". If the principal himself is familiar with the terminology and needs around sensory issues, and doesn't just leave all that to his specialist staff, then clearly it is a real focus at this school and they will have resources to help us. I wanted to cry right there on the spot, I was so relieved!
He talked about the importance of the right fit of teacher for kids like Katie and immediately asked me more details about her personality and learning style and promptly chose her teacher then and there. Based on her needs, he knew just who he wanted her to have. He asked about previous services and I explained about the request for evaluation last year and being pushed into the 504 instead. He told me that was a really backward way of looking at that process and that they have a completely different approach to it here at Hayes. He encouraged me to go ahead and write him a letter right away to request an evaluation so we could get things rolling as soon as school started instead of having to go through the timely process of waiting for the teacher to identify her as having problems. He even walked me right down to the office of the SpEd coordinator for their building to introduce me and let him know I'd be requesting the evaluation.
I left that day so relieved and full of hope! I may have even cried, if not I was certainly close. We wouldn't have to go through another year like last year! There were people out there who knew what to do and were eager to help!
So when schools brought back some of their staff in Aug. I made a couple calls to see what our other options might be. It turned out Hayes was not in our home district after all, so I would have to open-enroll her if I wanted her there.
I called Hayes and was transferred to the director of SpEd services, explained that my daughter had needs I didn't feel were being met by her current school and asked if she could tell me, in general, what kinds of services their school offered for the types of struggles I described. With only a brief description from me, the woman was able to tell me several things that might be possible, more that Valentine Hills had offered in a whole year. With this and the therapist's recommendation, it was clear that this would be a better fit for Katie, even if it did mean changing schools again.
I stopped by the school that evening to fill out the papers for the open-enrollment into another district. When I walked into the office I identified myself as the mother who'd called earlier and the secretary remembered and asked if I'd been able to get my questions answered talking to the SpEd director. I assured her that in 10 minutes of conversation I had been convinced this would be a better alternative for us.
There was a man also standing around in the office who overheard this and casually asked me where we were coming from and what struggles we'd been having. I told him a little about Katie and some of her needs, and I don't remember the specific wording/term he used, but he said something like, "Oh yeah, XYZ can really be an important piece for sensitive kids.", and whatever the term was, something sensory related, it was exactly the right thing for what I was describing. Something specific to sensory processing issues that the general person wouldn't know about. I was pleasantly surprised!
I was even more impressed when he proceeded to introduce himself as Mr. P, the principal of the school! I knew right there that this school "get's it". If the principal himself is familiar with the terminology and needs around sensory issues, and doesn't just leave all that to his specialist staff, then clearly it is a real focus at this school and they will have resources to help us. I wanted to cry right there on the spot, I was so relieved!
He talked about the importance of the right fit of teacher for kids like Katie and immediately asked me more details about her personality and learning style and promptly chose her teacher then and there. Based on her needs, he knew just who he wanted her to have. He asked about previous services and I explained about the request for evaluation last year and being pushed into the 504 instead. He told me that was a really backward way of looking at that process and that they have a completely different approach to it here at Hayes. He encouraged me to go ahead and write him a letter right away to request an evaluation so we could get things rolling as soon as school started instead of having to go through the timely process of waiting for the teacher to identify her as having problems. He even walked me right down to the office of the SpEd coordinator for their building to introduce me and let him know I'd be requesting the evaluation.
I left that day so relieved and full of hope! I may have even cried, if not I was certainly close. We wouldn't have to go through another year like last year! There were people out there who knew what to do and were eager to help!
Wednesday, October 22, 2014
Summertime and Tics
Ha! You thought I'd spelled that wrong didn't you, tics? But I wasn't referring to the insect variety, as in wood ticks, but more alarming nervous tics.
This was the first summer I had ever worked full time since Katie was born. There was no way she and her 13 y.o. sister Melanie could be home alone together all day, every day, so I enrolled Katie in a park program 3 days a week, ED-Venture Club. She enjoyed it very much as she is truly a social butterfly & is dead bored without other kids to play with.
I believe I've mentioned before Katie's occasional problems with extreme, painful constipation. At the very end of the school year or early summer she had one of these occasions just before we left for the drive to her Dad's house (an hour and a half away). She tried and tried to go for nearly an hour after school, grunting and groaning and crying, but without success. Declaring herself unable to go at the moment, we loaded up on Miralax and set off on the drive. All the way there I kept hearing little whimpers, grunts, or "hm"s from the back seat as she struggled with her discomfort.
When they returned, I continued to hear her making the the little "hm" noises, and assumed she was still having trouble. But no, she had relieved herself at her dad's (w/lots more Miralax) and had been going regularly since. I asked if she was sure, coz she was making that little noise like when she has to go, but she assured me she didn't. I continued to hear it randomly, and once or twice asked her why she'd just made that noise, but she either didn't remember making any noise, or didn't know why she had. I wondered if this was some sort of tic (I have an aunt with a throat-clearing tic) or just a habit, and decided to ignore it so as not to reinforce it. It did become very annoying for a while though, like someone next to you sniffling repeatedly.
A couple weeks later she told me that she had been nodding her head at summer program and the teacher told her she shouldn't do that so much/or so hard, that she was going to hurt her neck or head. I found this odd and couldn't imagine what she must've been doing. Pretending to head bang to some music on the radio? But once it was mentioned, I started to notice it myself. She was nodding her head randomly, and rather hard/forcefully. I'd seen her do this now and then in enthusiastic agreement about something, maybe she was agreeing with some internal monologue in her imagination? Or something more? The "hm"-ing had stopped though.
Finally one night there was another behavior that couldn't be chalked up to anything else. I'd seen it once or twice, but this night my mother asked Kate if there was something bothering her eyes, because she kept blinking, rather rapidly. When I'd noticed before I thought maybe her hair was getting in her eyes. It was a bit of a shaggy cut and the bangs were getting long-ish. That night I had her get a headband to pull all her hair back, but the blinking continued. She said nothing was bothering her eyes, she didn't know why she was blinking so much, and went on playing. I quietly observed her and was alarmed to see she was blinking, hard, over 30+ times a minute. A definite tic. A hard blink that was almost a grimace, pulling up the corners of her mouth as well.
I called her pediatrician the next morning and they were able to see her right away. That morning Katie complained that her eyes ached, like they were bruised. I'm sure the muscles were tired from such forceful overuse.
Dr Edward's first thought was that the ADHD medication could be causing it, though Kate had been on the Concerta for over a year, so it seemed strange that this would start now. I was concerned that the Concerta may be dampening her appetite anyway, so we agreed to take her off ADHD meds for 2 weeks to allow it to fully leave her system and see what would happen. Two unmedicated weeks sounded daunting, but she really did much better than I feared, not too wild. And boy did her appetite rebound!! Suddenly she couldn't get enough. I knew then that the Concerta was largely responsible for her low weight and decided we were done with that for good!
Two weeks passed unmedicated and the tic was greatly reduced, but still definitely there. We started her on Vyvance to replace the Concerta. The nurse said tics are tricky, they can seem to pop up out of nowhere and sometimes they just don't find a cause. Most likely it was related to anxiety. So, for the time being we just tried to ignore it. I'm not terribly disturbed by it, though I admit I don't like the way it looks when she does it. It looks weird, and that's not easy for a mother, but I don't mention it. I just don't want it to become an issue with her peers, if they start to notice it and she ends up teased about it.
This was the first summer I had ever worked full time since Katie was born. There was no way she and her 13 y.o. sister Melanie could be home alone together all day, every day, so I enrolled Katie in a park program 3 days a week, ED-Venture Club. She enjoyed it very much as she is truly a social butterfly & is dead bored without other kids to play with.
I believe I've mentioned before Katie's occasional problems with extreme, painful constipation. At the very end of the school year or early summer she had one of these occasions just before we left for the drive to her Dad's house (an hour and a half away). She tried and tried to go for nearly an hour after school, grunting and groaning and crying, but without success. Declaring herself unable to go at the moment, we loaded up on Miralax and set off on the drive. All the way there I kept hearing little whimpers, grunts, or "hm"s from the back seat as she struggled with her discomfort.
When they returned, I continued to hear her making the the little "hm" noises, and assumed she was still having trouble. But no, she had relieved herself at her dad's (w/lots more Miralax) and had been going regularly since. I asked if she was sure, coz she was making that little noise like when she has to go, but she assured me she didn't. I continued to hear it randomly, and once or twice asked her why she'd just made that noise, but she either didn't remember making any noise, or didn't know why she had. I wondered if this was some sort of tic (I have an aunt with a throat-clearing tic) or just a habit, and decided to ignore it so as not to reinforce it. It did become very annoying for a while though, like someone next to you sniffling repeatedly.
A couple weeks later she told me that she had been nodding her head at summer program and the teacher told her she shouldn't do that so much/or so hard, that she was going to hurt her neck or head. I found this odd and couldn't imagine what she must've been doing. Pretending to head bang to some music on the radio? But once it was mentioned, I started to notice it myself. She was nodding her head randomly, and rather hard/forcefully. I'd seen her do this now and then in enthusiastic agreement about something, maybe she was agreeing with some internal monologue in her imagination? Or something more? The "hm"-ing had stopped though.
Finally one night there was another behavior that couldn't be chalked up to anything else. I'd seen it once or twice, but this night my mother asked Kate if there was something bothering her eyes, because she kept blinking, rather rapidly. When I'd noticed before I thought maybe her hair was getting in her eyes. It was a bit of a shaggy cut and the bangs were getting long-ish. That night I had her get a headband to pull all her hair back, but the blinking continued. She said nothing was bothering her eyes, she didn't know why she was blinking so much, and went on playing. I quietly observed her and was alarmed to see she was blinking, hard, over 30+ times a minute. A definite tic. A hard blink that was almost a grimace, pulling up the corners of her mouth as well.
I called her pediatrician the next morning and they were able to see her right away. That morning Katie complained that her eyes ached, like they were bruised. I'm sure the muscles were tired from such forceful overuse.
Dr Edward's first thought was that the ADHD medication could be causing it, though Kate had been on the Concerta for over a year, so it seemed strange that this would start now. I was concerned that the Concerta may be dampening her appetite anyway, so we agreed to take her off ADHD meds for 2 weeks to allow it to fully leave her system and see what would happen. Two unmedicated weeks sounded daunting, but she really did much better than I feared, not too wild. And boy did her appetite rebound!! Suddenly she couldn't get enough. I knew then that the Concerta was largely responsible for her low weight and decided we were done with that for good!
Two weeks passed unmedicated and the tic was greatly reduced, but still definitely there. We started her on Vyvance to replace the Concerta. The nurse said tics are tricky, they can seem to pop up out of nowhere and sometimes they just don't find a cause. Most likely it was related to anxiety. So, for the time being we just tried to ignore it. I'm not terribly disturbed by it, though I admit I don't like the way it looks when she does it. It looks weird, and that's not easy for a mother, but I don't mention it. I just don't want it to become an issue with her peers, if they start to notice it and she ends up teased about it.
End of a difficult year
You're probably tired of hearing me complain about Kate's school, but there were just a couple more issues I'll mention to close out that school year.
The 504 plan had stated a place would be provided for Katie to go to calm down when she got upset. At home she has a small space behind an armchair where she likes to go, which she calls her Katie Space. She craves the tight confined space, similar to Temple Grandin's squeeze boxes, only without any actual pressure. No space was specifically provided at school, so Katie improvised by curling up in the space under her desk. This was not acceptable to her homeroom teacher, however, and she felt she was "yelled at" for doing it. Here she was, recognizing her body's need to re-regulate itself to calm down and trying to self sooth, and she felt she was punished for it. I can understand that having her under the desk might not be ideal and could be distracting to others in class, so the teacher had every right to say this was not a valid option, but then GIVE HER ANOTHER OPTION!
Another trick Katie tried to use to limit distractions from other kids around her while she was working was setting opened folders in front of her at the corners of her desk to sort of screen herself in, as had been suggested by another teacher a previous year. This too was met with disapproval by her teacher, and she was not allowed to use them. Here again, the poor girl is recognizing her need for a strategy and trying to problem solve for herself, and is met with (in her eyes) condemnation.
What would have been the final straw, if I had heard of it before the last week or so of the school year was when Kate came home upset one day, reporting it had been the worst day of her life (not unusual that year). When asked why, she became teary and told me she had been upset about something and was crying in class. "But Mr Bush didn't even notice me or say anything!", she moaned. "Finally, I just went up to him to tell him about it, but he just put up his hand (in a "talk-to-the-hand" type gesture) and said, 'Nope! Katie, nope, that's drama. Drama, drama, we're not gonna have drama now. Go back to your seat.' "
Now, I understand that there are some attention seeking children who will and do create drama just to get adults' attention, and need boundaries set about when and how their issues will be addressed. But that is not Katie. When a child with identified special emotional needs comes to you crying, they need something from you. Their equilibrium is upset, and they need help to regulate themselves back to a balanced state. Dismissing the child out of hand and telling her to go away with her messy emotions is about as far from what she needs as you can get.
It was then that it became clear to me what her homeroom teacher's view of Katie and her needs was, and just what an oppressive environment she had been struggling in all year. Here is the sort of person whose basic philosophy is that kids with struggles should "just toughen up and get over it". "Quit being such a baby and just deal with it". My God! Don't you think they would if they could?! Do you think they enjoy going to pieces over seemingly little things in front of all their peers??! Do you have any idea how embarrassing it is for them to lose emotional control in front of everyone!?
I found it interesting to note on her report card that in the columns marked 'Uses CARES skills' (Cooperation, Assertion, Responsibility, Empathy, and Self-Control.) all of her other teachers said Katie did this consistently, while her homeroom teacher said only sometimes. Clearly, they were not well matched. I still think about writing that teacher a letter to let him know how badly he dropped the ball with Katie. What a chance he had to make a real difference in her life at a really hard time, and how he'd missed it. I had been so excited for her to have a male teacher for a strong male influence in her life, since her father is so uninvolved. Having his support and encouragement could have given her such confidence and strength. Instead, she got the same message I'm afraid she often get's at her Dad's house, "Quit being such a baby and just toughen up."
The 504 plan had stated a place would be provided for Katie to go to calm down when she got upset. At home she has a small space behind an armchair where she likes to go, which she calls her Katie Space. She craves the tight confined space, similar to Temple Grandin's squeeze boxes, only without any actual pressure. No space was specifically provided at school, so Katie improvised by curling up in the space under her desk. This was not acceptable to her homeroom teacher, however, and she felt she was "yelled at" for doing it. Here she was, recognizing her body's need to re-regulate itself to calm down and trying to self sooth, and she felt she was punished for it. I can understand that having her under the desk might not be ideal and could be distracting to others in class, so the teacher had every right to say this was not a valid option, but then GIVE HER ANOTHER OPTION!
Another trick Katie tried to use to limit distractions from other kids around her while she was working was setting opened folders in front of her at the corners of her desk to sort of screen herself in, as had been suggested by another teacher a previous year. This too was met with disapproval by her teacher, and she was not allowed to use them. Here again, the poor girl is recognizing her need for a strategy and trying to problem solve for herself, and is met with (in her eyes) condemnation.
What would have been the final straw, if I had heard of it before the last week or so of the school year was when Kate came home upset one day, reporting it had been the worst day of her life (not unusual that year). When asked why, she became teary and told me she had been upset about something and was crying in class. "But Mr Bush didn't even notice me or say anything!", she moaned. "Finally, I just went up to him to tell him about it, but he just put up his hand (in a "talk-to-the-hand" type gesture) and said, 'Nope! Katie, nope, that's drama. Drama, drama, we're not gonna have drama now. Go back to your seat.' "
Now, I understand that there are some attention seeking children who will and do create drama just to get adults' attention, and need boundaries set about when and how their issues will be addressed. But that is not Katie. When a child with identified special emotional needs comes to you crying, they need something from you. Their equilibrium is upset, and they need help to regulate themselves back to a balanced state. Dismissing the child out of hand and telling her to go away with her messy emotions is about as far from what she needs as you can get.
It was then that it became clear to me what her homeroom teacher's view of Katie and her needs was, and just what an oppressive environment she had been struggling in all year. Here is the sort of person whose basic philosophy is that kids with struggles should "just toughen up and get over it". "Quit being such a baby and just deal with it". My God! Don't you think they would if they could?! Do you think they enjoy going to pieces over seemingly little things in front of all their peers??! Do you have any idea how embarrassing it is for them to lose emotional control in front of everyone!?
I found it interesting to note on her report card that in the columns marked 'Uses CARES skills' (Cooperation, Assertion, Responsibility, Empathy, and Self-Control.) all of her other teachers said Katie did this consistently, while her homeroom teacher said only sometimes. Clearly, they were not well matched. I still think about writing that teacher a letter to let him know how badly he dropped the ball with Katie. What a chance he had to make a real difference in her life at a really hard time, and how he'd missed it. I had been so excited for her to have a male teacher for a strong male influence in her life, since her father is so uninvolved. Having his support and encouragement could have given her such confidence and strength. Instead, she got the same message I'm afraid she often get's at her Dad's house, "Quit being such a baby and just toughen up."
Wednesday, October 8, 2014
Too Skinny
We went to the girls' regular pediatrician in March for a routine re-evaluation of their ADHD meds for the year. While there, it was noted that Katie was significantly under weight for her age and height, and had, in fact, lost 3 lbs. since the start of the school year. At 8 and 1/2 years old and 4'3", she weighed only 47 lbs., giving her a BMI of only 12.73. The pediatrician referred her to a nutrition specialist to see if there were any food allergies at play, keeping her from gaining sufficient weight,
and/or what other measures should be taken.
Katie has always been an extremely picky eater, though I'd never been able to directly link it to anything related to sensory processing. Many kids with SPD have aversions to or other problems with particular food textures, avoid crunchy things like chips, or mushy stuff like yogurt. Others have problems with particular flavors, certain spices etc. I'd never noticed any pattern like this in Kate though. Lately she just plain wasn't hungry, she said. I made meals which she barely ate, though she did tend to graze in general if allowed, eating little bits here and there. As long as it was healthy stuff I didn't mind this too much. I wondered if possibly her sensory system sends out the FULL signal before she really is, causing her to honestly think she's full and can't eat anymore at the moment, but then come back for more in a short while.
In preparation for our consult with the nutritionist I tried to start a food journal of what Katie ate and when. When I asked her what she'd had for breakfast at school that morning, she told me she hadn't gone to breakfast. When I asked about the day before, she hadn't gone then either. All school year I had assumed she was eating breakfast at school because it was provided to everyone at no cost and I knew she got there in plenty of time. Turns out she hadn't been eating any breakfast since fairly early in the year, claiming she just wasn't hungry in the morning. Closer discussion of what she ate for lunch revealed that though she always took lunch, she rarely ate more than a few bites of any of it. She was not taking anything for their afternoon snack time anymore either, again because she said she just didn't want it. No wonder the girl is a twig! I had no idea she actually ate so little! (Again feeling like a crap mother!)
I wondered if the Concerta for her ADHD could be suppressing her appetite, and planned to ask her doctor about it if no other solutions were found with the nutritionist.
After talking with us the nutritionist didn't feel testing for celiac disease or other food allergies was necessary at the time, but coached me in ways to get her to consume as many calories as possible. I got her Ensure Plus nutrition shakes to drink in the morning in place of breakfast, since she didn't mind drinking, but didn't want to eat anything solid in the morning. The last few weeks of school she also took her lunch to the nurse's office to eat where there would be fewer distractions and she wouldn't be tempted to be so busy socializing that she'd forget to eat. By the end of May she'd gained 3 lbs. and early July was up to 51.4 lbs. The nutritionist was satisfied that she was gaining sufficiently with these more conscious dietary changes and didn't feel any further testing necessary.
 | |
| Scrawny little thing |
Katie has always been an extremely picky eater, though I'd never been able to directly link it to anything related to sensory processing. Many kids with SPD have aversions to or other problems with particular food textures, avoid crunchy things like chips, or mushy stuff like yogurt. Others have problems with particular flavors, certain spices etc. I'd never noticed any pattern like this in Kate though. Lately she just plain wasn't hungry, she said. I made meals which she barely ate, though she did tend to graze in general if allowed, eating little bits here and there. As long as it was healthy stuff I didn't mind this too much. I wondered if possibly her sensory system sends out the FULL signal before she really is, causing her to honestly think she's full and can't eat anymore at the moment, but then come back for more in a short while.
In preparation for our consult with the nutritionist I tried to start a food journal of what Katie ate and when. When I asked her what she'd had for breakfast at school that morning, she told me she hadn't gone to breakfast. When I asked about the day before, she hadn't gone then either. All school year I had assumed she was eating breakfast at school because it was provided to everyone at no cost and I knew she got there in plenty of time. Turns out she hadn't been eating any breakfast since fairly early in the year, claiming she just wasn't hungry in the morning. Closer discussion of what she ate for lunch revealed that though she always took lunch, she rarely ate more than a few bites of any of it. She was not taking anything for their afternoon snack time anymore either, again because she said she just didn't want it. No wonder the girl is a twig! I had no idea she actually ate so little! (Again feeling like a crap mother!)
I wondered if the Concerta for her ADHD could be suppressing her appetite, and planned to ask her doctor about it if no other solutions were found with the nutritionist.
After talking with us the nutritionist didn't feel testing for celiac disease or other food allergies was necessary at the time, but coached me in ways to get her to consume as many calories as possible. I got her Ensure Plus nutrition shakes to drink in the morning in place of breakfast, since she didn't mind drinking, but didn't want to eat anything solid in the morning. The last few weeks of school she also took her lunch to the nurse's office to eat where there would be fewer distractions and she wouldn't be tempted to be so busy socializing that she'd forget to eat. By the end of May she'd gained 3 lbs. and early July was up to 51.4 lbs. The nutritionist was satisfied that she was gaining sufficiently with these more conscious dietary changes and didn't feel any further testing necessary.
The Best Laid (504) Plans Gang Aft Agley
There was one more thing I wanted to implement to try to improve the school situation, but since it had taken so long to get the plan in place to start with, I didn't want to try to get it added as an official accommodation just yet.
At Kate's previous school each child was given a student planner in which to write down their daily homework, which the parent would then review and initial each day, keeping abreast of what homework was being completed, or not. There was also space for notes back and forth between parents and teachers. Kate's new school did not use these, but has a loose sheet called Peek-at-the-Week on which kids were meant to write their homework instead. Well, the Peek being an individual, loose sheet, Katie inevitably lost/forgot it 99% of the time, so instead I bought a tough notebook with a folder inside to use in it's place.
I spoke with the coordinator and he approved its use, so the first day I sent it I wrote to her teachers:
In addition to the measures outlined in the 504 plan, I would appreciate it if we could use this notebook for regular communication about things for Katie. I was told she would receive a wipe-off checklist for when she gets to her desk in the morning (re: turning in finished homework, etc) and one for organizing at the end of the day. So far she reports that she hasn't gotten anything like this. Can you please check into that?
She has a hard time remembering to give me parent notes that are sent home, so please see that anything like that is put in the folder in here so I have one place to look for all communication.
Enclosed there now is the signed copy of the 504 plan which she was supposed to turn in a week ago and I just found at the bottom of her backpack while writing this!
Please feel free to write any notes to me, or else please just initial & date so I know you saw this every day. Thank you -
I thought this was a reasonable request and was hopeful it would open communication so I would have a better handle on how things were going each day. The two main teachers endorsed its use the first day I sent it to school, but it was tough getting it worked into the routine. Neither teacher had bothered to take the signed 504 plan out of the enclosed folder and pass it on to the services coordinator over the next two days and I had to write another note asking them to do so! When Katie repeatedly brought it home unsigned I wasn't sure if she wasn't showing it to them each day, or they just weren't signing, so I wrote again, saying "If Katie doesn't show this notebook to you on her own PLEASE ASK FOR IT!" One teacher began to use it fairly regularly, but her homeroom teacher rarely did. A permission slip and check for a field trip sat in the folder for a week until I wrote another note asking them to check it every day. One teacher included occasional little notes about behavior/emotional problems on some days, but her homeroom teacher only ever just initialed, so I wasn't kept aware of these issues in his class.
At Kate's previous school each child was given a student planner in which to write down their daily homework, which the parent would then review and initial each day, keeping abreast of what homework was being completed, or not. There was also space for notes back and forth between parents and teachers. Kate's new school did not use these, but has a loose sheet called Peek-at-the-Week on which kids were meant to write their homework instead. Well, the Peek being an individual, loose sheet, Katie inevitably lost/forgot it 99% of the time, so instead I bought a tough notebook with a folder inside to use in it's place.
I spoke with the coordinator and he approved its use, so the first day I sent it I wrote to her teachers:
In addition to the measures outlined in the 504 plan, I would appreciate it if we could use this notebook for regular communication about things for Katie. I was told she would receive a wipe-off checklist for when she gets to her desk in the morning (re: turning in finished homework, etc) and one for organizing at the end of the day. So far she reports that she hasn't gotten anything like this. Can you please check into that?
She has a hard time remembering to give me parent notes that are sent home, so please see that anything like that is put in the folder in here so I have one place to look for all communication.
Enclosed there now is the signed copy of the 504 plan which she was supposed to turn in a week ago and I just found at the bottom of her backpack while writing this!
Please feel free to write any notes to me, or else please just initial & date so I know you saw this every day. Thank you -
I thought this was a reasonable request and was hopeful it would open communication so I would have a better handle on how things were going each day. The two main teachers endorsed its use the first day I sent it to school, but it was tough getting it worked into the routine. Neither teacher had bothered to take the signed 504 plan out of the enclosed folder and pass it on to the services coordinator over the next two days and I had to write another note asking them to do so! When Katie repeatedly brought it home unsigned I wasn't sure if she wasn't showing it to them each day, or they just weren't signing, so I wrote again, saying "If Katie doesn't show this notebook to you on her own PLEASE ASK FOR IT!" One teacher began to use it fairly regularly, but her homeroom teacher rarely did. A permission slip and check for a field trip sat in the folder for a week until I wrote another note asking them to check it every day. One teacher included occasional little notes about behavior/emotional problems on some days, but her homeroom teacher only ever just initialed, so I wasn't kept aware of these issues in his class.
Slow Process
Two months later I’d still heard nothing.
In the meantime I started my first FT job
since I became a parent, so it was a huge transition and I admit I didn’t stay on top
of things very well. Things with Katie went from not great to terrible without me there every afternoon when she got home from school to enforce our previous routines.
I called the
student services coordinator back and asked about the status of the plan. He told me he’d
sent it home in Katie’s backpack! Loose in the backpack of the kid with an
identified problem of not bringing
home papers!! Without a phone call or
email to give me a heads up! And what happened to having another meeting where we discussed the services they could offer??
He’d assumed the plan
was in place and all going to fine, since he hadn’t heard any more from me! Never mind the fact that it requires a parent
signature to make it official and that he’d never gotten it back from me! Ugh! I was extremely unimpressed with the help this
system was NOT providing! I asked him to please send home another copy that day and I would look for it now that I knew it should be there. He said I should read it over and let him know if I wanted anything changed, or sign and return it if not.
Now, granted, I am not an expert in 504 plans by any means, but what I received seemed so simplistic and generic, I had a hard time imagining this was going to make a big difference.
The accommodations listed were:
- Special Ed busing At least they got the main issue that started it all!
- Preferential seating to avoid distraction. Well sure, wouldn't teachers already be
doing that for any ADHD kid?
- Acknowledge positive behavior. Duh! Isn't that kind of a given?
- Provide space for student to calm down.
- Discuss changes to schdule ahead of time with student.
- Allow time at the end of the day to organize take home materials.
I spoke to the coordinator and reminded him that I'd asked if someone could check in with her at the beginning and end of the day to help her organize herself, but I didn't see anything like that included in this plan. He said they'd discussed that and wondered if they couldn't start with giving Kate a wipe-off check list she could do at these times instead, and see if that would solve the problem. I agreed to give it a shot, so they added:
- Provide checklist to help keep student organized.
I signed the plan and returned it April 7th. It had taken most of the school year to get a plan in place, but at least now that it existed I was assured it could be reworked in future and would follow her throughout her academic career as she moved up.
Requesting IEP evaluation/504 plan
I was not at all familiar with
the protocol for requesting and IEP (Individualized Education Plan)
evaluation or 504 plan when Katie's therapist suggested it in December
(2013). I decided to wait until after the winter break and discussed it with a couple other mothers I knew whose kids receive special ed services. The girls' step-mother, (or Bonus Mom, as they call her) Mary had been through this process with her elder son and encouraged me to push for a full IEP evaluation, even if we didn't really think Katie would qualify, just to be sure it was all covered and nothing was missed.
When school resumed I called and spoke with the Student Services Coordinator at Katie's school and requested such an evaluation. He immediately tried to put me off by saying that at their school they really didn't like to jump right into full-on Special Education assessments (required for the IEP) right away, because it involves hours of testing and evaluation by a multidisciplinary team of staff. Instead, it was really their policy to start with a 504 plan and see if the issues could be addressed that way before resorting to a full-blown SpEd assessment. He did not actually refuse to do it, but I was very strongly persuaded that it was the way they usually did things, especially for problems as "minor" as Katie's.
So I agreed to start with the 504 plan, just to get things rolling. I really didn't understand (and still really don't) the difference between the 504 and IEP anyway (except that IEP services are much more comprehensive). He told me they were in the middle of working on plans for a couple other students and could then meet with me to talk about Katie's needs.
A meeting was held Jan 21st between myself, the services coordinator, Katie's two primary teachers, and several other district specialists like the school counselor, psychologist, nurse etc. They asked me to describe the struggles Katie was having and what I would like them to help her with at school, consulting with the teachers as we went to see what their perspective was.
I told them how it had actually all started with a transportation issue, which they had been told had been addressed, and why the change which had been made was still unacceptable. They agreed that walking around the pool was a bit too much to ask, and assured me they could get something else in place right away.
As to what else I was concerned about, it was hard to put into words exactly. I did mention Kate's utter lack of organization, and did request that someone check in with her in the morning and before she left for the day to see that she had what she needed to get homework done and turned it back in when she brought it back. Described how she can become perfectionistic and get upset when things aren't the way she wants them, needing time to calm herself down. In the end they had me sign a bunch of releases so they could get documentation from her therapist, doctor and Alexander Center, and told me we would meet again in about 2 weeks to discuss what they felt they could offer to help.
When school resumed I called and spoke with the Student Services Coordinator at Katie's school and requested such an evaluation. He immediately tried to put me off by saying that at their school they really didn't like to jump right into full-on Special Education assessments (required for the IEP) right away, because it involves hours of testing and evaluation by a multidisciplinary team of staff. Instead, it was really their policy to start with a 504 plan and see if the issues could be addressed that way before resorting to a full-blown SpEd assessment. He did not actually refuse to do it, but I was very strongly persuaded that it was the way they usually did things, especially for problems as "minor" as Katie's.
So I agreed to start with the 504 plan, just to get things rolling. I really didn't understand (and still really don't) the difference between the 504 and IEP anyway (except that IEP services are much more comprehensive). He told me they were in the middle of working on plans for a couple other students and could then meet with me to talk about Katie's needs.
A meeting was held Jan 21st between myself, the services coordinator, Katie's two primary teachers, and several other district specialists like the school counselor, psychologist, nurse etc. They asked me to describe the struggles Katie was having and what I would like them to help her with at school, consulting with the teachers as we went to see what their perspective was.
I told them how it had actually all started with a transportation issue, which they had been told had been addressed, and why the change which had been made was still unacceptable. They agreed that walking around the pool was a bit too much to ask, and assured me they could get something else in place right away.
As to what else I was concerned about, it was hard to put into words exactly. I did mention Kate's utter lack of organization, and did request that someone check in with her in the morning and before she left for the day to see that she had what she needed to get homework done and turned it back in when she brought it back. Described how she can become perfectionistic and get upset when things aren't the way she wants them, needing time to calm herself down. In the end they had me sign a bunch of releases so they could get documentation from her therapist, doctor and Alexander Center, and told me we would meet again in about 2 weeks to discuss what they felt they could offer to help.
Bus Stop Change ??
In the meantime, just before Christmas Break they did finally change Katie's bus stop. She was reassigned to a door connected to our own building, but equally inaccessible and impractical for someone like Katie. The new location required her to go down our hall and take stairs to the first floor, passing through 3 heavy fire doors to reach a locked door to the pool area, where she had to walk around the edge of the pool to another fire door on the opposite side and go all the way down another hall, through 2 more heavy fire doors.
This certainly did not seem like a safe alternative to me! To begin with, Katie still, a year later, has great difficulty opening the heavy fire doors separating hallways. Secondly, the maze of blank hallways and doors this required her to navigate would have had her lost in no time if she tried it on her own, and walking around the edge of the pool every morning and afternoon!??! Seriously? I walked it with her for the last week before Winter Break, and I guess it was better than scraping windows to drive her 1/2 a mile, but honestly was this really the best the district could do?
Cathching up again
Here I am again, incredibly behind in posting. Sorry folks, bear with me, please.
When I last wrote, it was late fall and I was being held hostage by a homework meltdown. Wish I could say that was the last of the year, but unfortunately things were only heating up at that time.
Regarding busing, I pressed the transport dept when the first snow flew about my request for a pick-up closer to our building, and was told any changes would have to wait til after winter break! Meanwhile I saw several of the "short buses" picking kids up at almost every door of each of the bldgs in our complex (one right next to us!) and asked if she couldn't just ride that bus with that child. Of course I was told no, those were only for Special Ed kids.
When I last wrote, it was late fall and I was being held hostage by a homework meltdown. Wish I could say that was the last of the year, but unfortunately things were only heating up at that time.
Regarding busing, I pressed the transport dept when the first snow flew about my request for a pick-up closer to our building, and was told any changes would have to wait til after winter break! Meanwhile I saw several of the "short buses" picking kids up at almost every door of each of the bldgs in our complex (one right next to us!) and asked if she couldn't just ride that bus with that child. Of course I was told no, those were only for Special Ed kids.
At Kate’s next session I
asked her therapist exactly what diagnosis she had in her system for Katie,
thinking that if it was the only way to solve this transportation issue, maybe
she could qualify for SpEd due to her diagnoses.
When I mentioned this to the therapist she encouraged me to request a
full IEP evaluation for Kate so she could get help with some of the other
things we’d been struggling with as well.
Katie had been resistant to
doing homework, often telling me she didn’t have any or forgetting to bring it
home, so that it piled up and then felt too overwhelming to her to even start
to tackle. Homework that did get done wasn’t getting turned in.
I’d find it a week later in a folder at the bottom of her bag. She also wasn’t bringing home all the usual
school notes that inevitably get sent home with students, but this being a new
school, at first I just assumed they didn’t send much home since there was an
online newsletter. Then suddenly she’d come home with 2+ months worth of parent
letters, permission slips, and health notices.
So one thing her therapist told me I ought to be able to request was to
have someone come meet Kate in the morning when she got to school and help see
to it that homework got turned in to the right place and whatever else prepared
for the day, and then also come to her before she left for the day to help her
make sure she brought home all her homework and necessary materials. She told me if Katie had an IEP or 504 plan
there would be services available that weren’t otherwise.
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