No IEP For Jack

David and I met with a team of teachers and specialists at Jack’s school on Tuesday to go over my request for IEP assessments for him. Even with the 504 accommodations in place, he has had increasing difficulty completing schoolwork, gets very frustrated and can’t seem to stay on track with homework, and he fights fatigue and physical discomfort constantly. From day to day, and sometimes even moment to moment, Jack can’t remember what he is supposed to be doing or how he is supposed to be doing it. This is particularly a problem in math and it often takes him an hour to do 2-3 math problems for homework, if he hasn’t been reduced to tears and stormed away from the table.

In preparation for the meeting, I printed out loads of information on learning disabilities and the effects of cancer treatment on students, including information on dyscalculia. I also had a one page write-up about Jack’s strengths and the challenges we’ve noticed. I did end up sharing the strengths/challenges page, but never got around to the other stuff because, essentially, none of it matters – Jack is doing too well in school (between 90-100% in all areas) and would be very unlikely to qualify for any special education services.

To put it more plainly, Jack’s loss of abilities/skills won’t qualify him for additional educational services unless/until he starts failing in school. He can go from being an A student to a C student and still not qualify. In fact, he needs to be 1.5-2 grade levels behind his peers in order to qualify for services under IDEA.

Furthermore, at this point in time Jack is still missing so much school that the specialists who would do the assessments would be unable to say that the issues he does have are related to learning disabilities (brought on by a health impairment) and not just due to his lack of attendance.

That’s a bit backward, if you ask me. Part of the reason he has low attendance is that he struggles so much in school already and wears himself out. If he attended school even on days he’s clearly exhausted and not up for anything, he would likely fail in his schoolwork more noticeably and thus qualify for services…but at the cost of his health.

That’s just not worth it.

So, right now, Jack won’t get an IEP. He still gets the 504 accommodations, thankfully. Some new accommodations were added, such as visual prompts to keep him on task, a tutor 2 hours a week, and inclusion in adapted PE (which isn’t limited to IEP students) once a week. He is to work on homework for no longer than 40 minutes each day regardless of how much he finishes (unless he feels like doing more).

I am conflicted about the success of the meeting. It’s hard to feel positive when it feels like things won’t improve much (if at all) as far as school goes. The struggle will still be there; we’ve just been given the OK not to fight so much.

On one hand, I’m proud of Jack for finding ways to keep up in school. He is fighting hard to be a good student and keep on learning. He has come up with creative ways to do those things. I’m in awe of him for how he is handling all the challenges he faces.

I also understand that there is limited availability for special education services. There are many other kids who need those services more than Jack does. We are very lucky that Jack isn’t struggling more than he is.

On the other hand, I wish he didn’t have to fight so hard in school when he also going through so much healthwise. I wish that the emotional impact of the extra effort he puts forth in school was taken into account. It would be nice if his personal potential was a little more important than just teaching him the bare minimum necessary to get to the next grade.

We are set to meet with the 504 team again in April to see how the accommodations are working for Jack. If things get worse, we can always ask for the IEP assessments again and maybe at that time attendance won’t play into it. There will also be different curriculum being taught at that point in time, so Jack’s academic performance may be different (especially as his chemotherapy dosages are increased again – he is currently on about 40% of what he’s supposed to be taking).

I’m still hoping to get Jack help in other ways. I’ve got an application in with our county’s Children’s Services department because Jack may qualify for occupational therapy through them. I am also getting him set up with a pediatric therapist next week, which may be helpful in reducing his stress and anxiety over school.

And, well, who knows – this could all become a non-issue in 13.5 months when Jack finishes treatment. One can hope, right?

Twist Me Up And Wring Me Out

It’s only Tuesday? I thought as I stared at the pill organizer. How is that possible?

The anxiety in my chest grew. But that’s what day the organizer told me it was. The next dose of medication was right there. My phone agreed that it was Tuesday, as well. I shook my head and sighed.

I can’t wait until Friday.

Yesterday had involved an insulting call from the social worker at the clinic: “Um….hiiiiii. How are you today? How’s Jack? Um, I’m calling because Gina (the child life specialist) and I thought we should sit down and talk with you on Monday about…umm…Jack’s…school isssssuuuuues.”

My reply was something like, “Right, well, I know Gina thinks it’s school avoidance but I really don’t think that’s the case. Jack is very upset with himself when he can’t make it to school. And this isn’t new – it’s been going on since treatment started – it’s just that we thought it was normal due to the intense treatment. He was missing school then anyway. But treatment is less intense now and he still has these problems and he’s supposed to be able to go to school. In any case, I won’t be there on Monday – his dad is bringing him into the clinic. You can talk to him if you’d like.”

“Oh, well, okaaaay. Well, it’s you we’d like to talk to. So, um…alright. We won’t do that then.”

And then she (absolutely the least helpful professional I’ve ever met) droned on and on. She said some stuff about how special and smart and sensitive Jack is and at some point I just tuned her out. Sure, she WANTS to help…but she is completely inept. I could hear her grasping for the proper words to use when talking about Jack’s ‘issues.’ It was painfully obvious that she was stepping lightly. She was in parenting territory, something that she’s proven before that she knows nothing about, and I hadn’t even asked for her help.

Lady, turn back now. You don’t belong here.

A couple of hours later, I chatted with our nurse case manager about Jack’s lab results. They were good enough that he could the next day’s dental appointment, but the acidosis hadn’t improved at all over the weekend, so they instructed us to increase the sodium bicarbonate from two pills a day to four. And let me know that chemo can’t be taken at the same time as bicarb or anything else…which I hadn’t realized before.

Oops. I’d been screwing up the pill administration for…oh, almost two years now. Great.

Later that evening I took my 13-year-old cat to the vet and walked out of there $120 poorer and with no definite answers. ‘Cause that’s how I like to party.

So today, as I stared at the pill organizer and the bottle of antibiotics sitting next to it, I shook my head and sighed. Really, how could it only be Tuesday?

I gave Jack four horse-sized antibiotic pills. He actually chewed them all up without incident.

I was more than surprised.

I asked Jack to pick out his own DVD to watch at the dentist office (of course he chose Dr. Who) and off we went. It would be okay…I hoped.

The appointment went well, all things considered. He certainly yowled less than he did at his last appointment. His teeth got cleaned and x-rays were taken and that’s what matters, right? Not the stand-offish dental hygienist who clearly thought that the fact that he wouldn’t sit still was a discipline issue. Not the tears all over my kid’s face from being essentially trapped while he was poked and prodded in a sensitive place.

[Take a 7-year-old who isn’t a great brusher, add a blood disease and suppressed immune system that makes it dangerous to floss, and what do you get? An uncooperative dental patient.]

Halfway through the appointment, Jack complained of chest pain while laying in the tilted-down chair and it only got worse. We went to the store to grab some tums (I’m not organized enough to carry them with me wherever I go yet) and sit for a bit while I had a warm beverage to calm my rankled nerves. I had to carry Jack through the store and he slumped in his chair when we sat down. After half an hour, the tums still hadn’t helped.

So we followed up that dental appointment with a trip to the ER, where Jack got an EKG and a chest x-ray per his oncologist’s orders. They gave him Maalox and, after a while, his pain had gone from a 5 to a 1. They sent us home.

This morning in between staring at the pill organizer with consternation, giving Jack five spoonfuls of pills in nutella, and attempting to get us both out the door and emotionally prepared for the dentist, I’d forgotten to administer Zantac. I’d given him four antibiotic pills, two sodium bicarbonate pills, and one Diamox pill…but forgot the antacid, which is a liquid.

Ugh.

I bet tomorrow I’ll stare at that pill organizer and shake my head all over again.

***

School, Special Needs and Sugarcoating Childhood Cancer

Yesterday I met with Jack’s principal and the district nurse to update our 504 plan. We are getting access to a home educator three hours per week to work with Jack when he can’t make it to school. I have to give HUGE props to Jack’s teacher – she has really stepped up to get us support and arranged this meeting in the first place. I can’t even express my overwhelming gratitude toward her! I’ve been much too occupied with trying to get Jack’s health stabilized and was just going to wait on the school issue (especially since he was keeping up anyway). But it was done for me! People can be really amazing!

I brought a letter with me from our oncology office regarding the need for IEP assessment, as well. Back in the spring when I requested an IEP process be started, I apparently did not do it in the exact right way because the district ignored it and had the school work with us on a 504 plan only. I didn’t fully understand the difference between IEP and 504 at the time, so I didn’t push the issue. Since then, I’ve learned a lot more about supporting kids with cancer in school and seen that even this far out, new side effects can pop up. At Camp Okizu earlier this year it was made clear that IEPs are really important for kids with cancer because even if they aren’t showing any significant issues right now, late-term effects are very common. Baseline testing can be really, really valuable when/if problems pop up later.

So when Jack was hospitalized in August, I brought up the issue with the hospital social worker and she drafted a beautiful letter for us! I’ve been sitting on the letter because Jack has barely been IN school anyway – it could always come later, I thought.

The principal took the letter in stride, but the district nurse was clearly flustered by it. Immediately reasons why she thinks we don’t need an IEP came pouring forth. I don’t completely disagree with her – Jack has to be in school to get services and he’s barely been there at all right now. Plus, the IEP requires a lot of assessments and that can be strenuous.

But then the district nurse said, “Well, treatment has come a LONG way! Most kids don’t have any lasting effects!”

And then I kind of wanted to punch her.

I wanted to tell her about how few new treatments have been approved for use in children and that oncologists are still using the same drugs developed between 1950-1970. In fact, the FDA has only approved ONE new drug exclusively for pediatric patients in the last 20 years – despite the fact that the prevalence of childhood cancer has risen 20% in that same time frame*.

I wanted to tell her that she’s wrong – in fact, two thirds of kids will have long-lasting chronic conditions that are caused by the very treatment saving their lives.

I wanted to point out that while more kids are surviving cancer, side effects from treatment are still a huge challenge. Quality of life for childhood cancer survivors needs a lot of improvement.

I didn’t say those things, but I did tell her that Jack had been screened for sensory issues and further testing was recommended. I informed her that we’ve already seen an impact on his abilities in math and physical education. I told her we need a baseline in case he has complications later.

“Well, we don’t want to push him physically when he is going through treatment,” she said.

Ugh. First, you don’t need to tell ME that. Second, that’s not what this is about, lady! It’s about preventing further decline and ensuring the best possible future for Jack.

The nurse did point out that an IEP does not provide a home educator, which makes the 504 more beneficial at this time. But the home educator was apparently a special benefit anyway and it ends January 7th. Because of that, we agreed to stick with the 504 for now and then meet again to reassess in January (which happens to work anyway – not much to be done about any of this during the holidays).

I came out of the meeting with mixed feelings. I am happy that the school is supporting Jack with the 504 plan and there was absolutely no hesitation as far as that was concerned. I’m a bit concerned about future struggles related to the IEP and assessments, though. I’ve heard a lot of negative things from other parents trying to get IEPs for their kids and based on this interaction, I’m just not confident that this will be easy.

At least I’m getting better at dealing with hard things, right?

Later in the afternoon I picked Jack up from school. One of his classmates came up to ask me if Jack really did have cancer and how he got it. I told her yes, he does, and we don’t know how he got it – sometimes people just get cancer. She seemed like she had more questions, but Jack started pulling on my arm and she walked away.

I hope we didn’t scare her. I wanted to give her a better answer but I didn’t have one. As much as I’d like to deny the reality of what we are living with, sugarcoating it isn’t the right answer.

————–

* Source: Unsung Heroes by the American Childhood Cancer Association, published 2011. (This link opens a PPT file.)

Sensory Screening

It’s hard to believe that summer is coming to an end, although the inclement weather in San Francisco this week has been providing plenty of warning. Jack’s first day of school is two and a half weeks away! I’m looking forward to it, but I’m also nervous about the impending struggles over homework and clothing and getting to school on time. Hopefully after a few months of a more relaxed schedule, we’ll have more energy and patience to tackle the school year.

In preparation for that, we were able to get Jack screened for sensory issues at a pediatric therapy center near to his dad’s house recently. The OT found several areas where Jack was having trouble, recommended further testing (to determine if this was ‘disorder’ territory) and said he would definitely benefit from occupational therapy. We’ll need to do more thorough testing to determine how much help he will need, but we also need to talk with his oncologists to figure out which areas are likely going to be a losing battle during chemotherapy. Some of the bigger issues the OT noticed were with muscle tone and Jack’s body awareness (proprioception). Those have never been strong areas for him, but they are also areas that chemotherapy can have an impact – sometimes permanently.

In looking up the information on sensory issues, I also found this information on inconsistent responses to sensory stimuli. I’ve noticed that Jack can react differently to stimulus based on the day – one day his socks bother him, and the next those socks are fine and something else is the issue. I knew some of these issues were always present with Jack – I distinctly remember setting him down in the grass as a tot which resulted in him freaking out and bursting into tears when he tried to crawl because he hated the feeling of the grass so much – and as time has gone by with us dealing with cancer treatment, I noticed that during certain times in his treatment cycles he had more trouble than at other times. This sentence from the above-linked article explains perfectly what I was already starting to suspect:

Also, the more outside stresses a child has in his life – the demands of school, illness, lack of sleep, tension at home, hormonal fluctuations of adolescence, changes in any medications – the harder it will be for him to “buck up” and tolerate his sensory issues as well.

I’m glad to have this information and to have some sort of explanation for the issues we’ve experienced, even if it isn’t exactly good news. This gives us a bit more understanding of how to address (and hopefully avoid) problems in the future. I’m not sure if we should have sought more help earlier in his life or not. In the past these sensitivities didn’t really interfere with our life. It’s hard to say whether we would have been able to keep on living with the sensitivities while only making minor adjustments, if he would have grown out of some of these issues, or if things would have gotten worse even without cancer in the picture. In any case, we can only act upon the information we have now, I suppose.

So I plan to follow up with the school district and push for testing and an IEP (rather than just the 504 plan we have in place currently). I hope we can get services through the district because I have serious doubts about our ability to find time for outside help until the cancer treatments are done (March 2015!). Of course, if that is the only option we will go that way. I’m just hoping for the (slightly) easier route. I think we are deserving of that!

Not surprisingly, this is all a lot easier to process when we’re not in the middle of trying to find various articles of clothing that are tolerable enough to get Jack out of the door and into the classroom. Thank goodness for summer break!

Cancer Creeps In

(c) hawmkoonstormbringer on Deviant Art

(c) hawmkoonstormbringer on Deviant Art

“In two years and one week we won’t have a million little spoons to wash,” David said to me this weekend. We use two to three spoons each day to give Jack his medication. We’re both looking forward to going through less spoons.

*

“I can’t lay down like normal because my back hurts. I have cancer and had a procedure today.”

I took Jack to the dentist yesterday, which was also a procedure day. I try to clump his appointments together so that I don’t miss as much work AND so that we can get the crappy stuff over with all at once. Unfortunately I failed to think this through entirely when booking the dentist appointment. Jack’s lower back was sore from the lumbar puncture he had in the morning, so laying down in a dentist’s chair was uncomfortable. I folded up my sweater as cushioning for his lower back.

We made special requests. We do this here and there to ease some of the things Jack goes through. Do you have toothpaste other than mint? Can you put a movie on other than Tangled (it stresses him out)?

Jack yowled the whole time he was getting his teeth cleaned. He went on and on about how awful the toothpaste (first ‘chocolate,’ then watermelon) tasted. I felt sorry for the other patients. I hoped Jack’s yowling didn’t scare them. I held Jack’s hand and asked him to try to be quieter. But when you’re a kid who chews chemo every day, your tolerance for other bad tasting things is lowered. What can you do?

*

“I think Bri doesn’t play with me anymore because she thinks my Broviac is gross,” Jack told me recently. I asked if the other kids at school knew about his Broviac and he said yes – he had showed them. Some kids are still mistakenly under the impression the tube comes out of his stomach and find that frightening.

*

Cancer is on my mind all the time. I wish it wasn’t that way but it pops up where I least expect it. We went for a playdate this weekend and I had planned to avoid the topic. But it’s pretty hard NOT to talk about something that permeates every part of your life. Still, I don’t want to be the person who brings down every conversation. Thankfully, I discovered that our hosts were familiar with the disease. The mom broached the topic and I followed suit.

She nodded sagely when I confessed that I feel like I can no longer chime in on a Facebook status when someone’s child is ill, particularly if the symptoms resemble those that Jack had when he was diagnosed. It’s as if I am the bringer of doom and gloom. I allow that little whisper of “it could be serious” to get through. I give credence to a parent’s worry for their child. People stop talking once I have weighed in.

It’s similar to what happened when I was getting a divorce. Suddenly I could see the worry in the eyes of the couples around me – ‘If they couldn’t make it work, what does that mean for us?’

If her child can get a life-threatening disease, can mine?

Everyone knows the answer. It’s harder to ignore the possibility when the evidence of it happening right out of the blue, with no warning at all, is standing right next to you.

Today I mailed out the request for a 504 assessment to Jack’s school district office. It feels strange. Jack is pretty gifted in many areas. He’s also fierce and determined; he’s caught up well with his peers after missing over six months of school. He can do the homework and he is getting 100% on math tests now.

But here I am asking for him to be considered disabled. It feels wrong.

This is the reason I’ve delayed broaching the topic with the school before now. My son, even with Leukemia, has so much compared to so many others. How can I ask for more? His performance would be normal for so many other kids. Most people can’t tell he has problems at all. Isn’t that good enough?

But it’s not about how much we have or how much others don’t. Jack is doing better than expected, but he is struggling a lot in order to do so. Yes, he’s completing his 12-14 pages of homework each week, but it takes him so much longer than it should and it wears on him. He is tired and moody and often feels like he isn’t living (although he uses different words to say so). It’s hard to learn and retain information when you are using up all your energy just to get through the work.

Hell, if I’m exhausted every day, how must he feel? His worries and his challenges are a bit different, but they are so much bigger than he is. He has too much to worry about for such a small guy.

For the last year I’ve been thinking we’ll get used to all this and life will go back to the way it was. I thought we’d eventually make ourselves believe that everything will be just as it would have been otherwise…that all the worry would ebb away. I’ve been waiting for the time when I could worry less about what is going on in Jack’s body and return to thinking about more frivolous things – or even important things like my relationships with friends and family.

But I’m starting to get it. We aren’t going to go back. We jumped the track and now find ourselves somewhere completely different. We have to move forward. I can’t care about many of the things I used to care about – I don’t have the capacity and I’m in a completely different place.

So, to my friends and family and even people I’ve yet to meet: I’m sorry. I know cancer is unpleasant and it might seem like I’m “all cancer all the time” now. I just can’t help it and I hope you’ll forgive me for that. I am still finding my way.

Cancer creeps into everything.