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!

Kids Notes

I have had so little time to write. It sucks. I need to write. I am much happier when I have been writing.

That’s not to say that I haven’t been happy – I’ve been surprisingly free of baby blues and depression! But how long can I maintain good mental health without participating in something I know keeps me sane?

Anyhoo…here we go with a mad-dash post typed with one hand.

Notes on baby Dez

Dez is a very good baby thus far. Although he absolutely hates getting his diaper changed and wails every time. I think we owe our neighbors some wine for putting up with it. So far I’m not too sleep deprived, but I bet that will change when he wakes up to the world more. And when I go back to work (sob).

David gave Dez his first bottle last week. He took it just fine and then went back to nursing with no problems. Yay for Comotomo bottles!

I got my first smile out of the little guy yesterday when I stuck my tongue out at him. It was awesome! After 5 weeks of nothing but naps and nursing and diapers…finally some interaction!

I’ve been struggling with oversupply again. My body continues to think I should be feeding triplets. This means Dez is gaining weight like crazy and going through zillions of diapers. The cool part of oversupply is that I can pump 3.5 oz. in 5 minutes – on one side. There are lots of cons, though – green poop, gas, choking during letdown, more frequent nursing, so many diapers!!! I am managing better than last time since I know what I’m doing but it’s still frustrating. At least Dez is dealing with it much better than Jack did – maybe because it’s not quite as bad as last time.

At 9 days old, Desmond rolled from his tummy to his back…several times. And he has repeated that performance pretty much daily. He can also go from his back to his side…it’s only a matter of time before he can roll both ways. I fear the toddler years, which will likely come sooner than I would like!

It took a good 3 weeks for his umbilical stump to come off and the area still hasn’t healed so it will need to be treated with silver nitrite. The same thing happened with Jack. I don’t know what’s up with my kids’ belly buttons!

I’m slowly searching for a daycare provider to send Dez to when I return to work in December. It’s a stressful task, to say the least. I’m taking it slow so that I don’t go into a panic and decide to quit my job so that I don’t have to leave my precious baby with a stranger. I thought it’d be easier the second time around but nope! I hope we find a good one right off the bat so that we don’t have to go through everything we went through with finding good care for Jack.

Notes on Jack

Jack is a great big brother. He fetches all kinds of things for me and the baby and always tries to distract the baby during those torturous diaper changes. He’s been good at keeping himself busy when I can’t put the baby down. I’m so thankful we still have our reading and snuggle time together before he goes to sleep so that we can still connect.

He’s generally been in better health and made it to school most days this year. Just a bit over 5 months of treatment left!

We met with his new teacher and found out that he is behind where he should be for a third grader. The things the teacher has noticed are in line with what we’ve seen at home and are common learning problem areas for kids who’ve undergone chemotherapy. We asked his teacher to document anything she sees and we’re going to (again) seek an IEP evaluation – and this time we won’t back down. We’ll be in a better position to argue for the testing now that Jack has been going to school regularly and his teacher is actually noticing his difficulties.

He’s been struggling with his friendships at school. He is so upset when his best friend doesn’t want to play with him and says other kids don’t understand the imagination games he likes to play. I wish I knew how to help him. I had similar issues as a kid but I don’t remember being quite so upset by it. Jack is just so sensitive.

I’ve been very surprised that lately he’s talking more about cancer, too. He found a game in the app store that is all about destroying cancer cells and he loves it! He’s also been drawing blood cells and he found a plush cancer cell on amazon. It’s a little unnerving that he is suddenly so focused on it, but I also think it’s good that he is talking about it. Maybe therapy has helped?

 

Alright, I’d better post this before it self-destructs. More soon, I hope.

Random Notes – aka CliffsBlog

After today, Jack has three lumbar punctures left before the end of treatment (March 2015). That makes me happy. I’m trying to focus on that and not the fact that yesterday, I noticed Jack has tiny scars on his lower back from all the lumbar punctures over the last couple of years.

I’m 24 weeks pregnant and I’ve gained 3 lbs total. I don’t know what to think about that! (When I was pregnant with Jack, I’d gained 20 lbs by this point.) The baby is clearly growing, though, so my doctor says it’s fine.

We haven’t decided on a name for the baby yet. I am (irrationally) worried this baby will never have a name. It’s not that there are a lack of names out there but nothing seems to be “the one.” It feels weird to not know what this baby’s name will be.

Make-a-Wish is coming out to our house on May 22nd to start the interior design phase of Jack’s room makeover! Yay!!!

So far, Jack is physically doing okay with the increase to his chemotherapy dose. Mentally, things aren’t so great and his anxiety has ramped up along with homework (math) difficulties. We found out at his appointment today that the chemotherapy dose is being increased yet again (that makes increases 3 weeks in a row) because he grew a bit since he was last in. And his ANC came back SUPER high, which really made me nervous at first but the nurse case manager said that it’s likely just a sign that he has finally gotten over whatever hit him so hard last August. So yay for that!

We are very much looking forward to the end of the school year in FIVE WEEKS.

Jack is wearing new shoes! He actually has two new pairs! He hasn’t put those freaking fur-lined boots on in over a week. Instead he’s trading off between Crocs and a pair of New Balance sandals. He wears them both with socks, but hey! I’ll take it!!!

This weekend we’re going to Camp Okizu (a free camp for families dealing with cancer). That will be a nice break for us and allow us some time to connect with other families in the cancer community. We’ve heard a lot about how people meet other families at the hospital/clinic but that hasn’t been the case for us. Generally the patients don’t mingle at Kaiser. We’re rarely in the waiting room with other families and the clinic booths are separated by curtains. So anyway, it’s nice to be able to chat with other families at camp who’re going through the same things as us.

Lastly, I had a wonderful Mother’s Day. David brought me fresh Starbucks, a donut, and made me breakfast in bed. He pulled some poppies from our backyard and put them in a vase for me, as well. I got to nap a bunch and then I took Jack to Build-a-Bear. We finished the day off by having Japanese delivery for dinner and watching Game of Thrones. I am cherishing the relaxing day because next year will likely be more chaotic with the baby in the house!