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.

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?