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.)

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Comments

  1. I’ve been dealing with IEPs and school and district resistance to them for 11 years. If you need any help/direction, please use me as a resource. Just remember that school administrators don’t always have your child’s best interest in mind and they often aren’t familiar with federal law (for example, you CAN have a home educator with an IEP – it isn’t limited to a 504). You’ve been fighting for Jack for a long time – stay strong and keep fighting!

  2. Cancer sucks, especially childhood cancer, so you are entitled to feeling like punching someone every now and then. And I appreciate your honest answer to the question Jack’s classmate asked you because kids deserve to know the truth, even if you don’t tell them every little detail. You are a kick-ass mom and I can’t wait until I get to hug you again…in person!

  3. Crystal, I’ve written a lot on special needs and IEPs because my kid was a SN kid before he was a cancer kid. I don’t want to take over your comments with links, but here’s one piece: http://www.sheknows.com/parenting/articles/813994/5-things-to-do-before-your-child-s-annual-iep-meeting-1

    I can give you more info if you need. Bear in mind that you may want to look into getting an advocate to come to the meeting with you — talk to your hospital social worker.

  4. First of all, you are awesome. I think wanting to punch is a perfectly logical reaction. I am by no means an expert, but when I was teaching I was part of many IEP meetings and a few 504 meetings. School districts generally don’t like to label kids as having special needs, which is essentially what an IEP does. Budgets are tight, so it’s not so much that they don’t care about Jack’s needs as they are afraid of being legally required to meet expensive needs. So I recommend pushing. Bring a lawyer if you need to (fear of lawyers will drown out fear of expensive needs) or if there’s an educator in the district who works with hospitalized and/or homebound students, talk to him/her. Hugs.

  5. You want to punch? I’ll hold.

    — That Someday Social Worker Who Could’ve Used A Flippin’ IEP Herself (Stupid Juvenile Onset-Depression).

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