Progress in Getting a Better IEP

After many years of back-and-forth with Jack’s school, we have finally gotten an IEP that I think we are all happy with!

For the first time since we started meeting with the educational team at the school back in 2013, they didn’t fight us on where Jack is academically. Everyone agreed that he is demonstrating the long-term effects of his cancer treatment. Everyone agreed that what we’ve been doing so far has not helped. Finally, the school accepted that the holes in Jack’s learning would not just magically fill up again now that chemo is done. They have conceded that Jack has a huge gap between intellectual ability and academic achievement in math due to processing problems (i.e. dyscalculia), memory, and attention issues.

fear of math

Does not compute… Photo © Jimmie, Creative Commons usage.

I can’t tell you what a relief it was to walk out of that IEP meeting last week and have plans in place – not just HOPE but plans.

Jack has four new goals written into his IEP, including learning to tell time*, learning to count money, practice basic math facts so that he can get 80% accuracy, and fraction learning in the resource room prior to learning it in the classroom. Accommodations will include shorter assignments, untimed classwork, and the teacher will make sure he understands instructions/repeats them back before left to do the assignments.

Jack previously had time one day per week in the Resource Room (which amounted to 75 minutes per month) along with two other students and no individual help. Now he’ll spend time three days per week in the Resource Room and one of those will be solo with the resource teacher!

It feels like the future is looking brighter! Even if these things don’t work, we’ll know more about whether Jack can learn certain things if taught in a different way or just…not at all.


* Jack has no concept of time – not hour of the day, not day of the week, etc. He can’t tell how long something takes or how much time has passed – whether it is nearing bedtime, whether it’s late or early in the day, or what day tomorrow is. He floats along and has to have everyone around him tell him what to do next. This makes time management impossible! Part of the problem is that he can’t hold onto information about sequences longer than maybe two steps (so even if he does know that today is Monday and tomorrow is Tuesday, he has no clue where those days fall in the sequence of the seven days of the week). Another part of the problem is that he has trouble with assigned meaning of things – i.e. a quarter is worth 25 cents because someone long ago decided that was the case; the value isn’t inherent to circular pieces of metal of that size. He can’t wrap his brain around that. It’s like it’s another language that he can’t comprehend – the language of sequences and numerical meaning.

Cancer is a Thief

Another school year has begun. Jack’s fourth grade teacher seems likes she knows her stuff. Right from the start she walked the kids through how to organize their day so that there are fewer opportunities to “forget” homework; they carry a binder with a planner inside and dividers for each subject. Every day the class reviews what is to be done that evening and writes it in their planners. Ms. A is helping them establish executive function skills, an area in which Jack has a lot of trouble thanks to cancer treatment.

In addition, she is starting off the year with light homework that is mostly review material. Which is great…

Except that Jack is struggling a bit with even this small amount of homework. He is fighting increased anxiety and having bouts of depression. By the second week of school, he was difficult to rouse in the mornings. He drags his feet getting ready to leave and is incredibly slow and distractible when doing any task. He complains of stomach aches or nausea a lot. He speaks of the pressures of being in fourth grade and he despairs about growing up.

My son has turned into Peter Pan.

Last week I met with Ms. A and the school’s new resource teacher to review Jack’s IEP. Afterward I felt exhausted and defeated. I’d tried to explain the issues we’re dealing with but they didn’t seem to grasp it. I guess that’s not a surprise – I feel like I am gaining new understanding all the time about why Jack’s experience with cancer has had such a profound impact on him academically and emotionally. The territory we’re in – that of a childhood cancer survivor – is relatively new in the grand scheme of things. Schools and even our oncology team are still learning what the long term effects of cancer treatment are.

As a parent of a survivor, I get a unique and up-close perspective (lucky me!). I’m only now really coming to understand that cancer is a time thief. This effect feels more pronounced with a child – a treatment that spans three and a half years impacts many more developmental phases in a child as compared to an adult.

Jack Kindergarten

Jack, age 5, first day of Kindergarten

In school and outside of it, Jack spent much of the last three and a half years in a haze. Compared to other kids his age, he didn’t play much of the time – he didn’t have the energy. He went from being a happy-go-lucky five-year-old to an intense and conflicted nine-year-old…he didn’t have much opportunity to be a kid in between those two points in time. He didn’t admit it at the time, but he admits it now: he was afraid of dying.

Academically, we are observing that Jack is missing some key building blocks for math. This past Thursday, we spent at least an hour together going over a fairly simple problem – 3,000 divided by 10. It was as if he had never divided before. And while he can answer 5×3 relatively easily, 5×30 is a whole different ball game. He hasn’t been able to connect increasingly complex math concepts with the basics.

Some of the building blocks are missing due to frequent absences from school for treatment or side effects from treatment. He missed half of kindergarten and started first grade a couple of months late because he had no ability to fight off illness. Once he was given the okay to go back to school, he rarely attended a full week until sometime in the later part of third grade. Generally if he was too sick to attend school he was also too sick (or just plain foggy-brained) to do any schoolwork at home. We did our best, but he was going at a snail’s pace while his fellow students sped along at school. When he did make it to school, he felt lost and like an outsider.

Other building blocks are missing due to the effect of chemotherapy on the brain. One of the key chemotherapy drugs Jack was given went into his spinal fluid and is known to cause learning problems in things like math and executive function. We were warned about this, but it’s not something we had the time to worry too much about because we were so busy going to and from various appointments and dealing with administering medications or battling side effects. We had limited emotional capacity for worrying about that, in any case. It was always in the back of my mind, but I had no choice but to push it aside and carry on.

Now Jack is faced with trying to catch up in an environment that barely acknowledges that he has fallen behind. He has to work much harder to stay on track – both to fill in the blanks and to learn the next thing.

Meanwhile, he has boundless energy, almost like he’s been saving it up all these years. He wants to PLAY and EXPLORE and TALK. But fourth grade is stricter, harder, has one less recess, and more kids per class. Fourth grade demands more maturity out of the kids and it just happens to coincide with a time when Jack is trying to shrug off the very thing that demanded maturity of him too soon and attempting to, essentially, recapture his youth.

Jack DC Ball Pit

Jack, age 9, in a giant ball pit in DC

Jack feels a sense of unfairness and has articulated it in his own way from time to time. “I’m dealing with cancer; why do I have to do homework?” is one line I’ve heard on several occasions. And there is the repeated refrain, “I don’t want to grow up! It’s too much pressure!”

It has taken me some time but I understand now. Three and a half years of treatment left Jack with only vague memories of what a carefree existence was like. He has his life, thankfully, but he also has PTSD and lives with so much fear. He can’t get time back – cancer has stolen his innocence and so much of his childhood.

Many nine-year-olds struggle with school and homework – in that, Jack is not alone. But Jack is the only one in his class (and, as far as I know, the only one in his school) who is dealing with those things while trying to make up for years of lost time and heal his soul. The school faculty have no idea how to help him.

Neither do I, really, but I won’t stop trying.

IEPs Are A Full Time Job

We got the results from the school’s academic and psychological assessments of Jack on Wednesday. It’s 18 pages of assessment results that seem to require a degree in childhood education to understand. I’ve read and re-read the information and googled  my little heart out, but it’s still not clear what it all means.

On the academic assessment, the only issue that showed up was “math fluency” where he rated low average, and a slightly low score (but still considered average) in oral reading comprehension.

For the psycheducational assessments, he’s all over the board. Scores range from ‘borderline’ or ‘at risk’ on the low end to ‘superior’ or ‘above expected level.’ Jack hits every level in some area, which I think is what prompted this note:

“Jack’s unique set of thinking and reasoning abilities make his [cognitive functioning assessment scores] difficult to interpret.”

That is great! And yet…not-so-great. I love that my kid is unique, but being unique makes it quite difficult to identify how to help him be successful in school.

There are many notes throughout the pages of results that state “attention fluctuated” or “drifted off.” This is uneducated speculation on my part, but I’m guessing this is leading to an ADD diagnosis. (He was assessed for this through Kaiser recently, as well, but we don’t have the results back yet. In talking to his dad about the information and going through the process, I think we both feel Jack is likely to be diagnosed with ADD – just without the hyperactive part.)

One thing in the assessment results that stuck out was: “Jack exhibits a processing disorder in the area of attention that is affecting his classroom performance.”

From what I understand from the document and some googling, “slow processing” is a THING but it may or may not be considered a learning disorder (I think that depends on each district’s interpretation). And then, because of the part that says “in the area of attention,” it’s unclear whether this is just a result of something like ADD or if there is something else going on, too.

In any case, the assessments are helping with focusing on areas where Jack needs some help, either through accommodations (like more time to complete tasks) or some sort of specialized education. Naturally, most of what is described is not news to us at all, but it’s helpful to see where Jack is NOT having problems so that we can identify what the likely issues are that need to be addressed.

I guess I’m learning that IEP assessments are not cut and dry – which is why, I guess, there is nothing in these documents that say “your child has a learning disability” or “he qualifies for special education services.”

So, the following things were identified and may represent the source behind the low math and oral reading comprehension scores:

Processing Speed Score (WISC IV): Borderline (lowest score)
Narrative Memory (NEPSY II): Borderline (second lowest score)

Behavioral Issues (based on the Behavioral Assessment Scale for Children 2):

Internalizing Problems – Clinically Significant
Attention Problems – At Risk
School Problems – At Risk
Behavioral Symptoms – At Risk & Clinically Significant

We have a meeting with the IEP team next week to go over what all of this means specifically for Jack. Until then, I will continue to google my little heart out to try to wrap my head around all of this. In addition, I was able to get in touch with a case manager from Kaiser’s Psych department who will attend the meeting with us and be an advocate for Jack. Thank goodness!

I am hopeful that many of these issues will fade away as the chemo leaves Jack’s body; however, it’s good to be prepared in case they don’t. And, of course, there are late effects that can pop up long after treatment is over, as well. Sigh.

For those of you who have IEPs for your children, what resources do you use to prepare for these meetings and help your child navigate areas of weakness? I would LOVE tips!

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?

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.

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