Summer Tastes Like Freedom

dance-32193_640School’s out for the summer! YEAH!

This is big for us. Probably bigger (and better) than it is for most households. See, during the school year, Jack spends weekdays at our house and then all but one weekend a month with his dad (who lives an hour away). In the summer the schedule flips, so we will actually get to enjoy weekends and have leisure time with Jack on a regular basis! We’ll get to have play dates with his friends, too.

Not to mention that for the next two months our household will have a break from:

  • Homework
  • Packing lunches (with foods Jack hasn’t gotten sick of)
  • Strict bedtimes
  • Dragging Jack out of bed for school
  • Worrying about Jack going to bed on time
  • Being late or calling into work due to Jack feeling ill
  • The small annoyance of Jack’s teacher spelling his last name wrong regularly (it drives me NUTS)

David and I will definitely be enjoying the quiet time on weekdays, too. With our baby due at the end of August, this is going to be the last couple of months where we get to have stretches of time alone together without any kids to take care of. We will enjoy that little perk of shared custody while we can!

We have an exciting summer ahead of us for other reasons, as well. Jack’s 8th birthday is July 13. His Make-a-Wish is underway and he should have a completed TARDIS console in his room by the end of summer. In early August Jack is scheduled to go to Camp Okizu’s oncology summer camp where he’ll be away from his parents for a whole week – EEP. We are nervous about it and we’re not sure he’ll actually stay the whole week, but we figure we’ll give it a try. We think it will be good for him to get a little independence.

August will bring our baby and a new school year – Jack will start the 3rd grade. And then things will get messy (messier) again.

So for now, I’m going to try to enjoy a little bit of freedom!

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.

————–

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

The Sensory Child Gets Organized [Book Review]

If you’ve been reading my blog this year, you probably know that we’ve struggled with sensory issues with Jack. We didn’t know whether these struggles were related to his fight with cancer (treatment can affect many things) or if the issues had been less noticeable earlier in his life because he wasn’t under so much stress. He’s always been a sensitive kid – I can remember setting him down on the lawn outside our apartment at nine months old and his look of consternation when he realized he was surrounded by pokey blades of grass. He kept trying to crawl away and shrinking back from the sensation of the grass against his palms. Frustrated, he started crying and reaching for me. After that I learned that if we put a blanket down on grass, he wouldn’t leave it – no playpen needed.

blanketingrass

When he wasn’t busy avoiding certain textures, he would sit and scratch his fingernails on others – which made me cringe. Getting Jack to eat solid foods wasn’t easy. He shuddered and gagged on so many textures. He also wouldn’t tolerate sticky or dirty hands and would hold them out and wave them at me while “uh uh uh”ing until I wiped his hands. This never bothered me – it was always easy to keep him clean because he would avoid being wet or muddy. It also never went away.

Later on, we noticed that he was sensitive to sound. He was easily startled and would cover his ears when a large truck passed by outside – even when we were cozily tucked into our house. He can’t STAND to hear me sing and will throw a fit until I stop.

He’s always had trouble with transitions, too. I don’t remember a time when I could just put a new pair of shoes on him – it’s always been a struggle. Coming home from a trip usually involved a meltdown, which we dealt with by sitting in a dark room together while I rocked and shhhhh’d him.

Many of these things have come and gone over the years and been fairly manageable. We just thought “that’s the way he is.” But earlier this year when clothing became such a problem that he was missing school, I realized maybe we needed help. We had him screened for sensory issues over the summer and there were several problem areas noted. We haven’t had a chance to follow up on the recommendations, though, due to Jack’s unstable health. Such is life, right?

When the offer to review the book “The Sensory Child Gets Organized” by Carolyn Dalgliesh came my way, I jumped at it. In between a zillion oncology appointments, I could get some useful advice that could help Jack in real time! Because while things like 504 Plans and IEPs will try to accommodate Jack at school, they don’t specifically address or help his sensory issues – only the fallout from them. I would love to PREVENT problems in the future.

Photo courtesy of Simon & Schuster

Photo courtesy of Simon & Schuster

First off, you should know that “sensory” children are dealing with a variety of issues – not just Sensory Processing Disorder. The book gives a great primer on what the various issues are and explain how they each impact children. Here are some statistics for you:

  • 1 in 20 kids have Sensory Processing Disorder.
  • 8.6% of kids are diagnosed with AD/HD.
  • Anxiety Disorders are diagnosed in as many as 1 in 8 children.
  • Currently, 1 in 88 children is diagnosed with an autism spectrum disorder.
  • As many of 50% of kids with a diagnosis also live with a co-existing condition
  • Most kids receive a sensory or special-needs diagnosis between ages 3 to 10 years.
  • Many kids will not be eligible for special services and parents need help supporting day-to-day life at home.

Sensory issues are not unique to one specific diagnosis. This struck me immediately because even if Jack does not qualify for a SPD diagnosis, there is still the fact that cancer treatments are known to impact cognitive function – particularly information processing, memory, and organization/planning. We need help in those areas and the book addresses them immediately, explaining in the section titled “The Sensory Profile: Different Diagnoses, but the Same Core Challenges” that the following issues are discussed inside:

  • Attention challenges
  • Ridigity/Infexibility
  • Anxiety and feelings of being overwhelmed
  • Social and emotional challenges
  • Low frustration tolerance and/or explosiveness
  • Executive function challenges

Jack deals with all of these to some degree. And as his parent I struggle to help him deal with them in the appropriate manner, especially because I am stressed about other things so often. I’m sure a lot of other families deal with these issues, too – not only those who have diagnosed conditions.

This book has pictures and suggestions for how parents can (EASILY!) help their children focus on what is important by eliminating other sensory challenges that overwhelm their brains. I love this! I am not by nature a very organized person – I am easily overwhelmed by clutter and mess. With that said, I did find that some of these suggestions are things we are already doing to help Jack (and ourselves, frankly):

  • Labeling toy bins so that he can quickly find what he needs without getting overly frustrated and giving up or throwing a fit
  • Calming routines before bed – we read three books and snuggle before saying goodnight – if we don’t, Jack will thrash in his bed unable to calm down and sleep
  • Picking out outfits ahead of time – this way he doesn’t struggle with the choice about what he “feels” like wearing
  • Sorting Jack-specific food and snacks so that they are easy to see and accessible – he has his own shelf in the refrigerator

Things I want to do still:

  • MORE labeling of bins and grouping of toys – according to Jack’s preferences
  • Rotation of bins so that he gets a chance to play with different toys
  • Visual instructions about the process of play (play, then clean up afterward)
  • Build a quiet zone where he can calm himself and feel safe
  • Buy tactile items – i.e. a bean bag chair and a mini trampoline – so that he doesn’t use our pets for this purpose

There are some fabulous suggestions for how to deal with homework, as well. Jack is easily frustrated and asks for breaks often, but we haven’t always been accommodating because we want him to hurry and get it done. But hurrying him tends to have the opposite effect – he gets more frustrated and ends up going slower because he’s overwhelmed. The book suggests building breaks into the homework time and offers ways to organize the homework load (i.e. do harder tasks first) and make it less stressful for the kids. I’m looking forward to trying these tips out this week.

And when I’m ready to delve deeper, there are exercises in the book to assess learning style, suggestions on organizations that may help, and even product recommendations. Can we say thorough?

If you want to check this book out, visit Carolyn Dalgliesh’s website to find out where to get your copy. And, hey, she has a Sensory Parenting blog, too!

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For purposes of this review, I was provided with a free copy of “The Sensory Child Gets Organized” by the publisher, but all opinions here are my own.

Halloween and the Alien Astronaut

Yesterday was Halloween and as any special needs parent knows, holidays can be totally unpredictable. I wasn’t sure Jack was going to make it to school; similarly to how other recent mornings have gone, he woke up slowly and complained of chest pain. But I just kept on hoping anyway, and he totally rallied!

Since Jack hadn’t been to school much lately, we only just found out on Wednesday about the dress up parade they were going to have Halloween morning. Jack’s dad was in charge of his costume and Trick or Treating this year, but they wouldn’t see each other until after school, so Jack had to improvise and come up with something for the parade – something that included no weapons or masks.

Of course, he chose something from Dr. Who.

He still has a toy chest full of costumes (from his daycare days when he could dress up every day) and luckily, the astronaut costume still fits (I don’t know how!). Jack decided he could wear that and be an astronaut like in Season Six of Dr. Who. Since he couldn’t wear a mask, he wanted face paint so he’d look like an “alien astronaut.”

He sketched out how he wanted his make up to look:

Self portrait by Jack

Self portrait by Jack

After clarifying that he didn’t just want to look like his usual self (“No, Mom, I want a white face with black around my eyes!”), I set to work. I have to say, it felt very strange to apply make up to my son. He did surprisingly well when I put eyeliner around his eyes, too!

spaceface

So serious…

We rushed out the door and got to school in time for Jack to join in the parade. I couldn’t find parking so I did something new – I pulled up to the drop-off curb and let Jack out on his own.

For the first time ever, I let Jack walk up the stairs by himself and I drove away without walking him to class!

It felt weird but Jack was totally fine (of course). *sob* Later in the evening David told me he was proud of Jack, but more proud of me!

I ended up heading back home after realizing the headache from the previous night had turned into a migraine, but I felt proud of myself and my boy. Then I started mentally kicking myself for not getting a picture or staying to watch the parade (thankfully, his other parents got pics of him later in the day) before deciding not to worry about it and going back to bed.

Jack ended up wearing two other costumes for Halloween. He was a “scary scarecrow” for Trick-or-Treating and then some sort of death metal musician with a red cloak. The astronaut was my favorite, though. Somehow that costume felt perfectly appropriate for the milestone of going off to class by himself!

One small step for Jack, one giant leap for mom (or something)…

alienastronaut

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