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Oct 31, 2012

Shaking Up The IEP With A Frankenschedule

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Two weeks ago we had our annual IEP meeting for Cordelia with her teachers and support staff. After the problems we’ve been having with her at school recently, this meeting couldn’t have come soon enough. We were already talking with her special needs teacher before the meeting and all in agreement that something had to change to get Cordy back on track.

At the start of the meeting we went over Cordy’s testing results. She’s reading at a beginning fourth grade level now. (She’s in second grade.) It’s possible she’s reading at a higher level than that, but she got annoyed with the testing and wouldn’t go any further. Her math scores are equally impressive, scoring off the charts on many of her timed math tests.

Her greatest challenges are linked to her anxiety. She tries to avoid anything new, she’s very sensitive to noise in the classroom, and she’s prone to overreaction when her behavior is corrected. This leads to many of the problem behaviors she’s been having recently, landing her in more and more trouble. She’s unable to self-soothe when she gets anxious and instead self-destructs. She also is bothered more by sensory stimuli when she’s bored and not focused on the task at hand.

We set up new goals for her to accomplish during the next year and then we discussed how to make school a better environment for her. We agreed that her current classroom was not working for her – it’s too loud and Cordy is bored with the level of work. It’s not the teacher’s fault, as she’s doing her best to deal with a class of kids who are just particularly rowdy. But there was also a disconnect between Cordy and the teacher, and it seemed like the best response was to switch classrooms to send her to the other second grade class.

So far, it’s going well. She likes the other teacher and says he has a “quiet, calm voice” that makes her feel less anxious. We haven’t had any calls home since the switch, and the end of the day reports are generally positive. She did get upset one day because she was caught reading in class (when she should have been focused on the teacher), but we used the Flummox & Friends video to remind her when she needs to be “in the group” and when it’s ok to not be in the group.

(Side note to parents of kids with autism, ADHD, or even neuro-typical kids: go watch Flummox & Friends. They only have a pilot so far, but they need to get this show produced. The episode has already given us new ways to cue Cordy on social behavior. No, I’m not an affiliate or anything – I actually gave them money through Kickstarter to help produce their pilot and I think they have a great idea.)

Back to our story –

We also met with the principal to discuss higher level reading and math for Cordy. After talking it through, we all agreed that skipping Cordy ahead an entire grade level might not be the best idea, as she’s already behind socially, but we clearly have to address her academic needs, too. I give the principal credit, she’s doing a lot of string-pulling to get the best possible education for our daughter.

This week we started our new Frankenschedule for Cordy, just in time for Halloween. They’ve cobbled together a work-in-progress new schedule for her that involves remaining in her new second grade classroom for most of the day, but attending third grade reading and spelling each day, and getting supplemental math homework supplied by the third grade math teacher while still attending second grade math.

Of course, reading times between grades don’t line up, so she’s missing reading one day to make sure she attends her required gym class each week, and going to music each week with the other second grade teacher’s class so she won’t miss music. She’ll have an “independent study” time on Mondays, too.

It sounds messy, and at the moment it is. Cordelia has had some anxiety over the changes, but I’m told she’s handling it fairly well. She told me she’s nervous about being with third graders, but lucky for us she was in a split level class last year (first and second graders taught together) so she knows a few of the kids in her third grade reading class. An aide is also going with her for now to provide reassurance and stabilize her emotionally.

It’s also still just a test as we see if this Frankenschedule will work out – five different teachers and the principal are working together to coordinate their efforts for my kid. If Cordy continues to excel at math, she may be moved up to third grade math, too, meaning another re-write of the schedule.

Aaron and I are also just as involved with this change. The new schedule requires a lot more effort from us at home, too. Her third grade spelling class has required assignments every night, all requiring parent participation, so we’re required to be more involved with her homework. And the supplemental math homework coming home is a form of self-study to keep her challenged and assess her abilities for a higher level of math, which means we’re the ones teaching it to her at the moment. (Thank goodness I was a math scholar in high school!)

The principal also agreed with the special needs teacher that Cordy should be re-tested in math as soon as possible. She missed the “gifted” in math assessment by a single point on the standardized test last year and they’d like to see that corrected. They’ll also be bringing in an evaluator to assess her for “superior cognitive ability” with an IQ test. They strongly suspect she’ll test in the gifted range, which will then make her almost guaranteed to have a spot in the fourth/fifth grade gifted & talented class when the time comes. That class is very non-traditional and everyone I’ve spoken with about it believes Cordy would thrive in that setting.

I can’t tell you how relieved I am that the school was willing to take action after the problems Cordy was experiencing a few weeks ago. She’s still anxious over all of the changes (she hates change) but she’s already showing signs of being more relaxed and there haven’t been any new incidents. We’ve agreed that she’ll no longer be sent to PEAK and lose recess for any outbursts, but will instead be sent to the special needs classroom for appropriate redirection and consequence if needed.

I’m crossing my fingers that the new schedule will work for Cordy and she’ll rise to the challenge. She’s getting a semi-custom education now, and it’ll be a tough adjustment for all of us but I think it’s worth it. We’re making active progress at controlling her anxiety so she won’t get in the way of herself. I have high hopes this kid will do great things.

There aren’t a lot of public role models for girls with autism out there. I look at Temple Grandin, and I’ve read her mother’s book about raising her and fighting to make sure she succeeded, and I can only hope that Cordy will be just as successful because of her autism and not in spite of it. She has unique gifts that will hopefully guide her purpose in life, and we’re here to nurture them and help clear any roadblocks for her.

There’s no chance we’re giving up on this kid.
Filed Under: Autism, Cordy, people who don't suck, school ·


Oct 29, 2012

Busywork Backlash

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How do you know when your super-smart second grader has reached her limit of doing worksheets at school?

When you get answers like this:

In case you can’t read it, her answer is “My teacher said so.”
 Well…she’s not wrong.
Filed Under: Cordy, school ·


Oct 26, 2012

Virus vs Willpower: Virus Wins

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Saying “I hate getting sick” is a ridiculous statement. I don’t know a person who LIKES to be sick. Well, maybe kids trying to get out of an exam, but that’s about it.

Most illnesses I fight off quickly and get back to business. Anything involving vomiting will keep me down for a few days, but other than that? I’m usually able to push past it and keep going. If I’m out for a day, I worry everything will fall down around me, because I’m always juggling so many items so very carefully.

But I’m sick. There’s no denying it. Two weeks ago I felt the start of a cold and beat it into submission with vitamins, sleep and spicy foods. That weekend the cold vanished and I gave a sigh of relief that it wasn’t going to get in my way.

Then last Tuesday, while on an Ohio Dairy Adventure trip (more on that later), I started to feel the stuffiness in my nose and a slight sore throat. By Wednesday the congestion had completely overtaken my sinuses. Daaaaaaaaaamn. Still, it was just a cold. Take some decongestants, vitamins and some strong coffee to keep me going and I’d be fine.

By Wednesday night, though, my voice was completely gone. Just a whisper. That’s fine, I’m still feeling OK other than no voice and general cold symptoms. My voice came back over the weekend and the cold seemed to go away. No cold is getting in my way.

But then then cough started. Oh my goodness, this may be the worst cough I’ve ever had. I’m on a steady diet of cough suppressants (including honey) and ibuprofen, but I cough day and night, my head and muscles ache from the coughing, and I’m utterly exhausted. No other symptoms – just a hard, dry cough that won’t stop and leaves me gasping for air at times.

I’m so frustrated because I have no energy or breath to get everything done. It’s maddening to see my to-do list keep growing and not be able to check off items fast enough. 

Next week I hope to bet better or at least have more energy, because I have SO much to write about. Cordy’s IEP meeting happened, and as a result big changes have been going on with her at school. And I want to tell you all about what I learned from meeting these gals last week:

Filed Under: me me me, plague ·


Oct 19, 2012

We Might Belong On The Gluten-Free Bandwagon

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Gluten-free seems to be the new big thing in food lately. Some say that switching to a gluten-free diet will cure nearly anything bothering you. While that’s certainly not the case, there is a growing body of evidence that many people might be sensitive to gluten, even if they’re not completely unable to eat it. And for those who truly need to be on a gluten-free diet, the influx of new products in the grocery and restaurants with labeled gluten-free menu items has made it a lot easier for them to find foods that comply with their dietary needs.

I’ve wondered if my family would see any benefit from going gluten-free. I have no digestive problems, but I do have a constant battle with low energy, especially after eating. Aaron, on the other hand, has a long history of stomach aches, cramping, and other digestive problems. But I’ll admit I also feel like gluten-free is the new fad that, while necessary for a small percentage of people, is being adopted by some for no reason other than being trendy.

While at BlogHer in August, Udi’s Gluten Free Foods was there as a sponsor and suggested I try going gluten-free for 14 days to see if there was any benefit to it. I expressed interest, and they sent me a sampler of some of their products to get me started.

I’ll confess: I did the challenge more for Aaron than myself. He’s never talked with his doctor about his digestion issues, and I suspected something in his diet was probably the culprit. If he was willing to try it with me, then maybe we’d have a clue to his stomach issues, or at least be able to cross one potential cause off the list. (Note: we didn’t have the kids go gluten-free. I didn’t feel the need to stress them out with a sudden shift in their diets for such a short period of time.)

We started on October 1 and stayed gluten-free for 14 days. The Udi’s bread, cookies and muffins were great to help with our craving for baked goods, but we didn’t limit ourselves to those items. I found a gluten-free pasta at the grocery made from corn and quinoa that was just as delicious as any wheat-based spaghetti.

It was HARD to go out to eat. Everything had to be carefully scrutinized, ingredients checked, restaurants vetted over the internet before we made a choice, etc. And even then we still ran into problems. We carefully checked before going to a local pizza shop for dinner one night. They advertised their gluten-free pizza crusts – too bad they were all out of gluten-free pizza crusts at the time. I had a salad and some baked gluten-free fries for my dinner that night.

I also found that gluten is in nearly everything. Sauces were a big hidden source of gluten, especially soy sauce. Even some lunch meats have gluten.

But there were also several foods we already were eating that were still safe to eat. My ham sandwiches were fine as long as they were on gluten-free bread. Pirate’s Booty cheese puffs and hard cheeses were still OK. Our Indian dinners we make at home were also naturally gluten-free. Some McDonald’s entree salads were still fine, too. And Nutella? Still gluten free. (Yay!!)

While we did have to be more careful and switch some of our usual products to gluten-free versions of the same food, it wasn’t as hard as I expected it to be. I didn’t feel deprived of any food. And the gluten-free foods tasted really good, too. Udi’s whole grain bread has a lot more flavor and texture than the bread I had been using. The bagels and cookies are also delicious. They were moist and had plenty of flavor, erasing my worries of food that tasted bland or had a hard texture.

At the end of 14 days, it was time to return to gluten. To make it even more of a gamble, it was the same day I was leaving for a three-day trip to Cleveland. I hoped that nothing horrible would happen to me.

The results: I do not appear to have any gluten sensitivity. While I enjoyed the foods, and did notice that I wasn’t quite as foggy-headed after eating, I didn’t notice any significant differences overall.

Aaron, on the other hand, was a different story. Throughout the challenge, he said he didn’t feel all that different. I started to doubt that gluten was a problem for him. But then he went back to his usual diet and, well, Monday was a rough day for his insides. Not to get into too much detail, but he felt pretty lousy from the stomach cramping and intestinal upset. He’s already returned to eating gluten-free to see if it will calm his digestive system down again, and will be seeing his doctor to get more information.

(If he’s willing to call the doctor and talk about this, then I know it must be pretty severe. He hates going to the doctor and hates discussing this topic even more.)

The next step will be deciding if we’ll try going gluten-free with the kids. Mira’s pediatrician has said it would be worth a try since she had a blood test for allergies that resulted in no actual allergies but an elevated IgE level, meaning she was having an inflammatory response to something. And if one or two members of our household are gluten-free, then there’s a good chance most of the food the other members eat will be gluten-free, too, just for ease of food preparation.

I’m not exactly thrilled with the idea of having family members who need to be gluten-free. It is a little more expensive – or a lot more if you buy mostly convenience items – and requires more thought and planning to eat outside of the home. But if it’s needed for the health of my husband and/or my kids, of course I’ll suck it up and do it. At least it’s easier to find products and support for it now.

Big thanks to Udi’s for giving us the push with the 14-day gluten-free challenge! It helped us think more carefully about what we eat and may have even uncovered a clue to Aaron’s health.

Full disclosure: Udi’s sent us product samples and coupons to help start the 14-day gluten-free challenge, but we still supplemented beyond that. And while most beer has gluten, I can happily report that most vodka is gluten-free.

Filed Under: Aaron, daily life, healthy living, me me me, reviews ·


Oct 11, 2012

"Worst Child" and Continuing School Problems

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We have been so lucky thus far in Cordy’s education. When she was diagnosed with autism, we were lucky to have her placed with a special needs preschool teacher who completely understood Cordy, what she needed, and how to bring this child out of her own mind to be with the rest of us. I’d argue that she possibly knew what Cordy needed more than we did.

When it was time to move on, that teacher knew where to send her and called in favors to have Cordy placed at a school on the other side of town where she knew the special needs pre-K teacher there would be the right fit. That teacher also continued nurturing Cordy, and prepared her for the road ahead. She then went to the special needs teacher for the elementary age kids, who quickly realized Cordy’s potential and got her on track for mainstreaming.

Our daughter has been surrounded by school professionals who have clicked with her and recognized her talents, and we’ve continued to be lucky. Last year was her first year of being fully mainstreamed, and first grade was an absolute success for her. I’ve witnessed other parents online fretting and stressed over IEP meetings and school issues, but we generally had no issues and sailed through each IEP meeting, all of us in agreement on what was needed and how well she was progressing.

Second grade, however, seems to be the wrench thrown into the well-oiled machinery.

Cordy had her first ever PEAK experience last week. For a reminder, PEAK is the school’s bad behavior process. It stands for Positive Efforts for Adjustment and Knowledge. Getting sent to PEAK involves missing at least a recess for isolated behavior issues, where the child sits in the PEAK room with a teacher overseeing them, and has to fill out a form addressing what they did wrong and how they will correct it for next time.

Last week she grabbed a boy around the neck while they were playing zombies at recess. She was protecting the other kids from the zombie, and the playing got a little too rough. Fair enough, I thought, she needs to know there are limits and even though she completely freaked out about it, I considered it an OK consequence. I was more excited that she was actually playing with other kids, and not spending her recess wandering around by herself.

Then last week she had another incident. This time she was laying on the ground when it was time to line up at the end of recess. When the principal came over and told her to stand up, she stuck her tongue out at her and ended up in PEAK again for it. Cordy couldn’t really explain why she did it, other than saying she wasn’t herself at that moment and an alien must have taken control of her. I was upset, but considered it a fairly minor offense and wondered if she was just having a hard day and couldn’t express it.

This Tuesday came word of another incident. This time, while standing in line for the pencil sharpener, she poked the girl in front of her in the elbow with her pencil. Well, stabbed really, since it broke the skin. Her second grade teacher was standing right there and couldn’t say if it was an accident or not. Cordy didn’t really know how it happened, either – she admitted she wished the other kids would hurry up so she could sharpen her pencil, but also said she didn’t mean to hurt the other girl. Cordy received PEAK again, only this time she lost her long recess.

I don’t believe she was trying to hurt the other girl. From what I can tell, she was next in line behind this girl, was very focused on sharpening her pencil and possibly distracted by other noise in the class, and then decided it was her turn to sharpen her pencil, missing that there was still an arm belonging to another person in her way. Not seeing the other people around her is very believable to me. Yes, she was careless and deserved a consequence for hurting someone else, but I genuinely don’t believe there was malicious intent in what she did.

That afternoon when I picked the kids up from school, Cordy’s special needs teacher talked with me about the incident and we discussed what could possibly be causing all of these problems to happen all at once. Cordy has never been in trouble at school before now. Her special needs teacher said that she thought Cordy wasn’t getting along well with her second grade teacher and the class style.

(This is going to get long, so can we all agree that special needs teacher will now be SNT moving forward, and second grade teacher will be referred to as T2 to save me some typing?)

Cordy doesn’t like that T2 has a loud voice and says that voice scares her sometimes when she thinks that T2 is yelling. SNT also says that class of kids is more rowdy and loud than the average class. I suggested that maybe we should have Cordy speak with the guidance counselor about ways to help her deal with her anxiety.

As we were leaving Tuesday, we saw T2 further down the hall getting ready to leave. I’m sure T2 saw us as well, but quickly turned and went out the door. “Mommy, can I go say goodbye to T2 and give her a hug?” Cordy asked. I agreed and she ran ahead of me and out the door.

This is my own opinion of what happened, but I’d swear T2 walked faster when she heard Cordy calling out to her. But Cordy did catch up and give her a hug. I was getting closer up the sidewalk, but T2 gently disengaged from Cordy, said something about needing to get home to her own kid, and walked off before I got there. Wouldn’t you want to say something to a parent of a child who is struggling in your class?

When I picked the kids up from school yesterday, SNT asked me to come inside the building. Oh, no. She told me Cordy had PEAK again. This time she called T2 a witch. I don’t want to make excuses for my child, but in this case I think T2 misunderstood. Cordy told me she thought T2 laughed like a witch she heard on TV. In our house, witches are totally cool – especially near Halloween – so I don’t think she was trying to be insulting. I can admit she may not have said it in a way that made that clear, though.

However, Cordy later told me that she was never told why she was sent to PEAK, nor did T2 say anything to her when she called her a witch. No form was filled out like previous times so that we could have a report of what happened, and no one talked to Cordy about what she did wrong or how she should behave in the future. Her teacher just dropped her off in the PEAK classroom on the way out to recess with no explanation. She sat out her recess confused as to what she had done.

My frustration level boiled over at that point, and I started crying in front of the SNT. The ugly cry. I turned away to make sure my two daughters who were playing on the other side of the room didn’t see, but I could no longer hold back the emotion of the last week. For the first time in a long, long time, I am scared for my daughter.

I’m starting to worry this is affecting Cordy’s self-esteem. She likes to please, is very hard on herself when she makes mistakes and may be internalizing that she’s a bad kid. She’s required to sign her PEAK forms, and on the second one she wrote “worst child” under her name. On a class worksheet, she wrote “I am horid.” (misspelled, but points for creative word choice) at the bottom.

“worst child”

But after talking with SNT yesterday, I think I’m starting to see the issue. SNT describes the class as loud and T2 has a loud voice and sometimes yells over the kids talking. Cordy also has her desk right next to the door, the coat rack and the pencil sharpener: a recipe for sensory disaster. She’s assaulted all day with noise from kids talking, a loud teacher who makes her anxious, and lots of background noise from the hallway, the pencil sharpener and the coat rack. It’s no wonder she’s having trouble keeping it all together. Hell, I’d have trouble dealing with all of that, too.

Cordy is also extremely bored in class, meaning the background sensory input is even more distracting to her because her mind isn’t focused on learning. She needs more challenging instruction and a more peaceful learning experience. A smart kid who is stuck in a boring situation most of the day is being set up for trouble. (Again, shades of my own childhood.)

And while I’m sure T2 is a great teacher and I would never judge her total abilities on her interactions with one child, I think she’s a bad match for Cordy. My gut feeling is that she doesn’t make an effort to accommodate Cordy’s needs, and at this point has written her off. Sent to PEAK for calling her a witch without even asking what she meant or trying to tell Cordy why some might think that’s not a nice thing to call someone? That isn’t helping the child at all.

Also, despite all of these things happening in the last week, there’s been no effort made from T2 to reach out to Aaron and I about it. We’re left learning about it through the SNT, who isn’t present in the room when it happens and is then stuck in the middle. Send a note home, give us a call, send an email…something to let us know you’re concerned about our daughter and want our input on how to make it a better experience.

Add in the devastating news that Cordy’s SNT, who has been a strong advocate for her for over two years now and the one person in the school she feels the safest with, has just been given a promotion and will be leaving the school at the end of this month, and I’m now in full on panic mode over what will happen to our sensitive older child. Who will be there to help her through this, and will the next person understand her as well?

I’ve cried for two days now at the fear that this entire year may be a complete loss for Cordy, even more worried that this could change how she views school permanently and affect her entire future. There’s no explanation for this behavior other than something is happening in the classroom. Her diet is the same, her home life hasn’t changed, and the only change we’ve witnessed at home is more anxiety that seems to be related to school.

But we are lucky again, at least for the moment. Her SNT is still with us through the end of the month, and we’re getting her IEP meeting in place immediately. I’m also asking for Cordy to be transferred to the other second grade teacher’s classroom and the SNT thinks this could be a good idea. She sees him only for reading and science at the moment, but Cordy tells me he has a “quiet, steady voice” and she thinks he teaches more “interesting” things. She would then have him as her primary teacher and only see T2 for limited subjects. (They team-teach.)

When I first asked Cordy what she thought about moving to his class, she gave her standard answer of not wanting anything to change. Even if she’s in a situation she doesn’t like, any change is viewed as worse than the status quo. (So common with autism.) But this morning, she came downstairs and immediately announced that she would be OK with changing classes and that she thinks she would have a better experience in his class. We were stunned that she would be so open to such a big change that quickly.

I’m still not sure what the final resolution of this will be, but I have a new-found admiration for those parents who have to navigate these murky waters on a more regular basis. It’s time for me to read up more on the IEP process and start writing out detailed lists of what Cordy needs in case they no longer continue to match what others think she needs. It’s been so easy until now, and I have a feeling it’ll continue to get harder as she gets older. I’ve failed at keeping myself prepared on how to handle these things, and plan to remedy that so we can be strong advocates for our daughter’s education.

But right now? I’m scared out of my mind.

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Filed Under: Autism, Cordy, school ·