Leukemia, Section 504, and Education Planning

I met with Jack’s first grade teacher, the school principal, and the district nurse yesterday to discuss a 504 assessment for Jack. If you aren’t familiar, Section 504 is part of the Rehabilitation Act that protects students with disabilities. Since Leukemia is a chronic, life-threatening illness that impacts his learning, working, and performance of manual tasks, he qualifies as disabled. Once a 504 assessment is made and it’s determined that a student qualifies, an IEP (Individualized Education Plan) is typically created to address the student’s needs in school.

Obviously, it’s taken me a while to get in gear and ask for this. The irony of requesting this assessment now is that Jack has caught up to his peers in most areas of concern since he started back to school in October. With that said, he is failing Physical Education, missing quite a bit of school, and his self-esteem and confidence are low. His stress level is difficult to manage even on a good day.

I was nervous going into the meeting. Not only am I still getting used to being an advocate for another person – a person whose needs have changed dramatically in the last year – but I’ve also read complaints about parents’ frustrating experiences with schools when enacting 504. I worried that I might get pushback from the school because Jack really is performing well. Thankfully, the school officials were all very understanding. I feel like we are off to a good start in helping to get Jack some relief.

In our hour-long meeting, I summarized Jack’s medication and treatment routines, explained how his health and side effects of treatment can impact him on any given day, and shared my concerns related to the challenges these things present to his education. Mainly it boils down to the fact that Jack puts forth so much additional effort in order to meet standards because of these challenges that it has compromised his emotional health and feelings about school.

We recorded the following challenges that impact Jack’s ability to learn:

  • Sensitivity to temperature changes
  • Bone and joint pain, soreness
  • Catheter in chest
  • Lowered muscle definition
  • Difficulty with coordination
  • Delayed reflexes
  • Shortness of breath
  • Dizziness
  • Weakness/fatigue
  • Attention/focus impacted by chemo treatment levels
  • Monthly steroid impacts mood and ability to cope with expectations
  • Medication taken at school, can get headache near time of receipt

Based on these things, the school will make accommodations for him to aid his learning in the following ways:

  • Additional time to complete assessments and assignments
  • Extra opportunities to repeat and explain information and directions
  • Extra time to respond to information and questions
  • Teacher will provide parents with work when child can’t attend school (to be completed if he feels well enough)
  • PE accommodations, such as alternate responsibilities/tasks
  • Teacher will remind Jack to eat and take snacks to accommodate his lack of appetite and slowness/distractibility when eating

This plan is a bit vague, but it should be enough to give the teachers the ability to customize the help they give Jack without making it a big production in front of his peers. I’m hoping that the additional understanding of Jack’s health issues from his teacher’s will take some of the pressure off of him and maybe that will even result in less self-injury! That’s my hope anyway.

I felt so relieved when I walked out of that office! I alternately wanted to cry and giggle hysterically. I didn’t have to push for any of this and it felt like I was part of a team that has Jack’s best interests at heart. There are people who have access to things that I don’t and they are going to help my child – we aren’t alone and we don’t have to spend tons of time blindly fumbling around the educational system.

Instead we can spend our time blindly fumbling our way through the parenting of our chronically ill kid! It may be a small victory but I will take it!

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All Grown Up and Nowhere to Hide

I keep sitting down to write and nothing comes out.  It’s been the same with talking.  David told me to talk the other night and I didn’t know where to begin.  I guess I’ll begin here with what I said first then – I said one thing and everything else just flowed.

I hate our house.  It’s too small, too drafty, too difficult to keep organized, and kills my allergies.  We’d really, really like to move.  We are saving like crazy in the hopes that we can buy a house next year.  Meanwhile the market isn’t looking as promising as it was earlier this year (hopefully that’s just because it’s nearing the end of the year) and it feels like our savings plan could be derailed at any moment…which brings me to…

David’s job sucks.  His commute is an hour each way and the job is high stress.  Prior to Jack starting kindergarten, David had arranged to start working from home in the afternoons so that he could pick Jack up from school.  This hasn’t been the best arrangement, honestly, since a lot of David’s work is on the phone and Jack gets bored when David can’t play with him and doesn’t like to stay quiet.  But, well, we figured it was a temporary solution and there were a few changes that would be coming down the pipeline that would make it all easier.  Except then a change came that said that David couldn’t work from home anymore due to asshattery by others.  Arg!  (We are still in limbo waiting to see if this is negotiable.)

There is an option of an after school program for Jack.  That costs money, of course…and that would mean delays on house buying.  It also means Jack is in school for longer during the day when he already doesn’t care to be there.  (On the plus side, his homework would be done before we picked him up for the evening.)

We’ve thrown around some other options but nothing has really crystallized yet.  So we wait and hope that the working from home option is reinstated.

Meanwhile, we’re still in a bit of agony over this school maladjustment.  Jack’s been acting out more and his teacher always has some piece of criticism, it seems.  It finally dawned on me that it might be a cultural thing, as the school is pretty strictly focused on academics (Jack’s classroom has homework 4 nights a week, and the other classroom has it 5 nights a week; I know of another school in the district that sends home activity-based homework for the weekends only).  The teacher (maybe the school?) seems to have an attitude of “what skill can’t this kid do yet?” rather than “what skills can this kid build upon?”  I am not the only class mom to notice some worrisome behavior with regard to self-esteem in the kids.

While I do think that Jack will learn a lot at this school, I’m wondering if emotionally this is not a good fit for him.  He is a sensitive and emotional individual and that isn’t likely to change (i.e. see his parents).  On the other hand, maybe he’ll learn some coping skills that could be useful later?  (He has to learn them from someone other than me; I am notorious for my crappy coping skills.)  And, regardless of whether it’s a good fit or not, do we even have the option to be choosy?  It is public school, after all.  And, really, would private school be different and different enough to be worth it?

And that’s when I go back to wanting the house like NOW.  ‘Cause we’ll move out of this neighborhood almost certainly and he’ll move schools almost definitely.  We’d have some sort of indication of whether this is just what a kindergarten transition is going to be like for Jack or if it’s THIS kindergarten that is the issue.

So, we’re in a holding pattern on the school front as well as on the job front.  In addition to those two things…

I spoke to my mom last night.  She has been dealing with ongoing health issues (the medical mystery tour, if you will).  Some time ago, probably close to 10 years ago, it was discovered that my mom had a benign tumor on her pituitary gland.  She was given hormones to shrink the tumor and then sent on her merry way.  When other weird issues started cropping up, they were dismissed as peri-menopause symptoms; however, recent tests show she is a good distance away from menopause still at age 49.  Unfortunately, she is already showing signs of bone loss and she now has a CT scan on her pancreas and an MRI on her head this week to look for tumors.  Not to mention that she is going to have a hysterectomy as soon as she can because of complications from endometriosis (except she has to wait to see what’s up with her cortisol – she may have Addison’s Disease!).

Needless to say, I feel very much like I want to crawl into a hole and hide from all of life’s complications.  I am young, dammit, and I don’t want to be dealing with all of this shit.  I feel overwhelmed and ill equipped to handle even one of these things at a time but all of them at once?  Ugh.

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Back to School Night

I can hardly believe it but tomorrow completes Jack’s third week of kindergarten.  I’m still having a bit of trouble believing I have a kid in school…

Tonight was Back to School Night.  We visited Jack’s school, checked out his classroom and found out how the teacher was arranging the curriculum for the kids.  We got feedback that Jack is a unique thinker, smart, and quite the artist – all things we know, of course, but it’s good that he’s finally showing his teacher what he can do!  We got to meet the parents of Jack’s buddy Jason (who introduced himself by roaring like a dinosaur – 100% Jack’s style!) and we’re working on setting up a playdate for the kids.

The school transition has had its ups and downs.  In general this week has been better as far as getting to school and there have been a LOT less tears.  A couple of times we pretty much ran there because Jack was dragging his feet for one reason or another but we were not officially late.  Thank goodness!

It’s just been…I dunno – a transition.  I made a comment the other day that this reminds me of the newborn stage – every moment is focused on Jack and he is making noise CONSTANTLY unless he is sleeping or eating.  I guess he’s still figuring out how to settle down and get into the new routine.  We all are, really.  Coupled with a cold smacking me across the face this week and our dog getting ill and it made things even more challenging.

Homework is something we’re all still getting used to.  Four days a week Jack’s school folder has homework in it – a two sided piece of paper with a paragraph to read, some sentences to write, things to circle, letters to practice, and pictures to match with the letter.  What gets me is that Jack does this stuff on his magnedoodle all the time but as soon as it’s labeled homework he balks!  “I don’t like homework” or “it’s too hard!” or “this is boring!”  I am hearing about how much he hates school more than how much he likes it…although now that P.E. has been introduced, he is pretty damned happy about going to school on Thursdays!  (Sidenote: the schools in SFUSD have to get grants to have physical education and nutrition programs!  Grants!!  And with the grant they get PE once a week…just, wow…)

It was surreal to be in the classroom tonight and talking to the teacher as an adult/parent rather than a kid/student.  My son’s artwork was hanging around the classroom and I sat down at a desk with his name on it.  My own school years just don’t seem that far behind me…

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The Littlest Sandbagger

My high school English teacher nicknamed me Sandbagger.  He was not very happy that one of his best students refused to move into AP English.  When I would complain about something (because I am a complainer), he would say, “If you don’t like it, move into the AP class, Sandbagger!”  He couldn’t understand WHY I didn’t want to go into the more advanced class.  I just rolled my teenager eyes at him and asked, “Uh, why would I want to do MORE work for the same education? What am I going to get out of it?”  He may have said something about college, but I was never much interested in that.  It probably didn’t help that I was dating a musician with dreams of becoming a rock star.

My sandbagging tendencies never got much better.  What can I say – I love to excel at being mediocre.  I would rather be busy working on a hundred things at once that I know I will get just right instead of doing just a couple things that will take forever and not turn out like I wanted.  I figure it’s some sort of odd combination of laziness, perfectionism, and a need to check things off my list every day.

So I guess the current situation with Jack in school shouldn’t surprise me much…

When I picked him up from school today, Jack'[s teacher mentioned to me that he is having trouble using scissors.  I told her maybe he is just getting used to using the “big kid” scissors at school – he’s been using the plastic scissors at daycare.  But then she said that Jack was holding the scissors pointed down and cutting toward the floor.  Uhhhhhh, what?  He certainly knows better than that.

Also?  He is writing his name starting with the k and working to the left.  Every time.  Oh, and when she asks him what a word says he just says he doesn’t know…

When I told her today that he can write many words just fine and READ, she was surprised.  Jack is tricking her!  For some reason he doesn’t want her to see that he knows these things already.

He is totally sandbagging.

I’m trying to re-examine my own drive for mediocrity in order to make some sense of what Jack is doing and try to encourage him to demonstrate his actual capabilities…yeah – no dice.  If I had the answer, perhaps I’d be a college grad by now or maybe I’d be making the near-six figures others in my field are making.

Until I figure it all out, I will just have to cross my fingers and hope Jack gets over this or some brilliant person is able to convince him he should show off his skillz more.

Any fellow sandbaggers out there have ideas?

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Off to Kindergarten

My baby went off to school today.  He is going to come back home this afternoon and then can I even refer to him as my baby anymore??  I don’t know.

Last night Jack picked out the clothes he would wear on his first day of school.  This morning I asked if he had any breakfast requests and he asked for pancakes.  I made banana chocolate chip pancakes for him (and for me).  His dad arrived at our house at 8:10 this morning and David, Joe, Jack, and I all walked to school together for the orientation (the school is two blocks away).

Orientation was…boring.  It droned on pretty long and Jack was bored (as was I).  I’m not sure if the staff actually intended to put the kids to sleep but they definitely were subdued by the time the announcements ended and the kindergartners headed to class.  We were told that while it used to be that kids just had to learn how to spell and write their name and count to 30 upon leaving kindergarten, the expectation now is that they are able to read and write sentences by the end of the academic year.  Now I’m feeling pretty freaking glad that we seemingly got a head start on that.  If he went in not knowing how to write or read a damned thing, I would be more worried.  Luckily he can read (he just doesn’t have the patience for sentences quite yet) and write pretty well.

Did you know kindergartners have homework?  Oh yes!  Jack will get homework Monday through Thursday.  Wowwee.

I didn’t cry and neither did Jack.  He did get nervous when he discovered that his “little white bunny” wasn’t in his backpack but he had notes from both me and Joe to remind him that we love him.  I made sure to let him know that this was everyone’s first day at school and they were all nervous, too.  That seemed to help.

Update this afternoon – Upon picking him up this afternoon Jack told David and I that his day was “wonderful…I can’t wait to go back tomorrow!”  Success!

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