Thursday, October 10, 2013

The Big IEP

Today was the big IEP meeting.  We have been planning it for weeks - when we would do it (had to be before her birthday next week), who would attend and what we wanted to be sure was considered.  We have talked to specialists in every field related to Scarlett's needs, discussed the fine points of parent's rights with advocates and other parents, and talked through the details with our fellow brain tumor families at camp.  It has been an all-consuming, stressful, anxiety-filled process that is finally over.

An Individualized Education Plan (IEP) is developed to ensure special education services for children age 3-18 (and beyond for some).  It is a very technical document that establishes annual educational goals for a student, including measurable reference points through the year.  It covers all aspects of the academic environment, including school placement, assistive technology, classroom environment, testing accommodations, physical and occupational services related to academics...the list goes on.

When a child with special needs turns 3, the school district is legally mandated to assess the child, create the goals and provide services to that child.  Sometimes, it is just a need for weekly speech sessions, or a placement in a general education classroom with some minor modifications.  For Scarlett, it was much more intricate.

The assessments happened over two weeks, when she was put into our district's special education preschool class.  They got to know her, observe her in the classroom environment and do the extensive battery of tests that help to narrow down what her needs really are.  The team to assess her included the classroom teacher, a school psychologist, a speech therapist, an occupational therapist, a vision specialist, a deaf and hard of hearing specialist, an adapted physical education teacher, the district nurse, signing interpreters and a bevvy of other district personnel to manage the details.  Each person had a test (or multiple) to measure Scarlett's abilities and gauge what might be an appropriate placement for her.

Today's meeting was the culmination of all the testing.  We received pages and pages of reports from each of the different departments, plus updated reports from her current teacher, current speech therapist, and non-academic PT and OT.  We were hoping to have them a solid week ahead of time, but after some delay (we heard off-the-record who!), we got them all Tuesday evening.  That gave us one full day to review them all, look for any inconsistencies with her previous assessments (many of which have been done regularly since she was first diagnosed), understand the jargon and have her current teachers review them.  It was tight, but we got it done.

As the days went by, the meeting got progressively larger, with each person who has a vested interest in Scarlett's education wanting to be present to support her.  It ended with a 4 tables-worth of people: Chris and me, the director of special education in the district, classroom teacher who assessed her, district speech therapist, deaf and hard of hearing specialist, school psychologist, district OT, PE teacher,  vision specialist, district nurse, a general education teacher, Scarlett's current teacher, speech therapist, school director, case manager and OT.  That's a total of 17.  I've been to many IEPs, and I've never seen or heard of one this extensive.

The agenda of the meeting was a full page of conversations that needed to be covered, including reviewing the reports together, discussing and amending the proposed goals, qualifying her for specific categorical disabilities and finally deciding on a placement.  Following all the parent guides we read, we brought snacks (sliced apples and s'mores bars, plus lemonade and sparkling water).  It helped to relieve a bit of the tension as we walked in to have everyone see chocolate on the table.

We started by each person introducing themselves, and then I really wanted to talk briefly about Scarlett's history.  So much of what has happened is not in the records, especially not the educationally-relevant ones.  I spoke briefly about her diagnosis, surgeries and complications, how far she has come and how much is unknown about her future.  It was very important to me for the team to understand that just because she is done with chemo, she is not "all better."  I ended by showing before and after MRI pictures, the CT scans that show the damage to her skull and finally, a picture of her now.  

We had to discuss which of the Individuals with Disabilities Education Act (IDEA) categories Scarlett would qualify for in order to get services.  They considered several, including language, traumatic brain injury, intellectual disability, low incidence disabilities and a few others, but settled on a primary qualification of Multiple Disabilites with a sub-qualification of Hearing Disability.  The others, including low incidence, which apparently gives the district extra money for Scarlett-specific equipment, will all be listed, too.  The director said they have never had a child who has qualified under so many categories - go Scarlett!

After two hours of reviewing reports and goals, and without having any real arguments or disagreements about what they saw, it was time to discuss placement.  This was where we were really nervous - we feel strongly that Scarlett needs to remain in her current school for language support.  She has made fantastic progress there, and we don't want to lose any ground.


Time was running out, so the director asked us if we were comfortable cutting to the chase.  We said yes, and she laid it out:  They offered to keep her at her current placement 4 days a week, plus add a 5th day of socialization opportunity at the local school.  She will continue to get speech therapy twice a week and add OT and PE twice a week each. To top it all off, rather than the district providing a bus or taxi service to get her the 35 miles to school (which is required for any out-of-district placement), we will be reimbursed for mileage each month.

It was that easy.  Everything we wanted, handed to us.  Everyone left happy, and, at least for all the non-district people, astonished.  That NEVER happens.  Districts almost never approve a private, out-of-district placement without a fight. 

We are still in shock that it went so well.  We were prepared for a battle, or at least an argument, and are still amazed that it did not come to that.  We are so grateful to everyone who put so much time and energy into assessing Scarlett, talking with us about what we knew and wanted for her, who trained us how to read the reports and what to say and ask for, and especially to those who sat there with us, saying only what they needed to in order to support us in this very stressful meeting.

So now that we've survived the dreaded IEP, here are our tips to others:
  • Be relentlessly positive and understanding with the people who are working with your child.  When something does not happen as expected, be firm but polite.
  • Read everything you are given.
  • Find experts on every potential topic whenever possible, and be prepared to refer to published research when you need to defend your point.  We didn't have to, but we had a binder full of articles to back up any of the potential solutions they might have proposed (i.e. a signing interpreter or the local school for the deaf)
  • Be reliable and consistent in communication.
  • Bring snacks and be polite in the meeting.  As a teacher, these meetings, after a long day at work, are brutal.  A simple gesture of "we're all in this together" goes a long way to maintain a positive vibe.
  • Ask every question that you come up with.  Don't let yourself feel swindled or run over by the jargon, even if you think it might sound dumb, or it takes a few minutes away from the agenda.
  • We are going to, in just a few minutes, write thank you notes to everyone who attended.  We will meet like this once a year; the staff may come and go, but we want our "good name" to be passed through each year to maintain a positive relationship with the district.
I am halfway through a delicious glass of wine, and ready to let this wild day end.

Wednesday, September 25, 2013

Getting our Ducks in a Row

I know, I know, it's been a while.  We've been swamped.
 
Scarlett got her new glasses!



They are Miraflex brand, bendable, flexible with an elastic strap around her head to help keep them on.  She has been incredibly tolerant of them, so it has been a relief!  We weren't sure we could handle yet another appliance (in addition to hearing aids, ankle braces, feeding tube and walker) that required constant parent management.  These go on and stay on for a while.  Whew!

That was, until she took off running in her walker (yea!), tripped and fell (boo!)  The glasses broke her fall, and kept her from scratching her eyes, which is part of their purpose, but sad for the brand new frames!  They're already in the shop for a touch up.

We are nearing the end of Scarlett's two week assessment period at the local school district preschool.  They have been very accommodating, and we have appreciated not having to get Scarlett the 40 miles to school through heavy traffic every morning.  

That being said, we have already begun preparing ourselves for a very intense time securing her IEP.  We feel very strongly that she needs certain elements in her school day to help her be successful, and it is looking like getting those things will not be easy.  We (primarily Chris, really) are spending our days getting updated reports, discussing issues with the current teacher, conferring with her primary teacher at the other school and meeting with all her other specialists to get our game together.  

At this point, we feel very fortunate to have a very supportive team for Scarlett - her teacher, speech therapist, physical therapist, occupational therapist and social worker all plan to attend her IEP meeting to help us make the case for the services she needs.  We have been quizzed and prepped by various people about how we will handle different issues they bring up in the meetings (we're assuming it will take several.)  We are reading up on how to be proactive, results-achieving IEP parents, and have a plan coming together.  Our goal is to maintain a good working relationship with the district (including many of my colleagues), educate a few people there on Scarlett and other kids with brain tumors, bu first and foremost get Scarlett secured with the education and services she needs.  We'd love to see this resolved quickly, with all parties satisfied...I just see that happening right now.

Luckily, we got a brief break from the paperwork and stress to go to camp!  We love our visits to Camp Arroyo, where we attend Jack's Camp, a weekend for families of brain tumor patients.  We get to go twice a year, and it is a great chance to catch up with friends, relax and learn more about life after the brain tumor.  This years camp had about 15 families, all with kids who are living after brain tumor diagnoses.  Scarlett is still the youngest.  We met several families new to this journey; it is always fascinating to me how different all of our experiences are, but how many similarities there are, too.  So many of us were told our children would die, or given such low chances for success that it is amazing to think we are all there together.

The focus this weekend was mainly on how parents help keep their stress in check.  Everyone there is living with inordinate amounts of stress, including many cases of PTSD, depression and constant grief processing.  We talked about how each of us needs to make sure we take the time to do something for ourselves, something that releases a tiny piece of that stress so that we can better focus on the task of keeping our kids alive.  Some shared that they garden, dance, listen to music or meditate.  I write, so here I am.

It's that time of the year once again - Scarlett's birthday is just a few weeks away!  Our annual blood drive is shaping up well.  Some of the details are different, but the basic goal is the same - donate blood!  If you can't make it to us, please consider giving blood when and where you can.  Cancer patients all over, in addition to accident victims and others, rely on blood donations to survive the near-deadly treatments that they hope will save their lives.  If you are lucky enough to be healthy, they need your help.  Every drop of blood that brought color back to Scarlett's tiny lips, that healed her bruises and brought her blood pressure back to normal, was donated by some fantastic, anonymous donor.

Tuesday, September 10, 2013

We're Making Progress

Can't slow her down...won't be long now.


Scarlett's Friends

Nearly two-thirds of childhood cancer survivors suffer from long-term effects, including hearing loss, vision loss, low immunity, neuropathy, inhibited growth,  chronic illness, loss of fertility, reduced cognitive function, depression and secondary cancers.

These are some of Scarlett's internet buddies.  Most have had brain tumors, like her.  Some have won their fight and are living happy lives.  Some are still in the fight.  Some are nearing the end of their battles.  Some are gone and sorely missed.  My list is getting longer every year...
There are so, so many more.  We are told by the government and big cancer foundations (some colorful language in that link) that it is rare.  It is not rare when it happens to your child.  Will you tell someone else about one of these kids?  Help us fight for better treatments, longer lives and forever memories for those we have lost.

Sunday, September 8, 2013

Years of Life

The effect of cancer and its treatments is often measured in Person-Years of Life Lost (PYLL).  The average age of diagnosis for prostate cancer is 68.  Since the average life span is 72 years, that is a PYLL of 4 (4 years lost of an average lifespan.)  The PYLL for breast cancer is about 11 (average age at diagnosis is 61).  The average age for diagnosis of childhood cancer is 6.  That means the PYLL for childhood cancers is 66.  66 years lost.  More from kids, like Scarlett, who are diagnosed as infants (and have higher mortality rates, thanks to treatments that are nearly as life-threatening as the cancer itself.)

The Make-a-Wish Foundation offers children with life-threatening illnesses, including cancer, a chance to be a kid again.  Each metropolitan area has its own MAW chapter, each with it's own Charity Navigator score.  Here's our local MAW of the Greater Bay Area chapter and score.

  • 81% of parents observe an increased willingness by their wish kids to comply with treatment protocols.
  • A combined 89% of nurses, doctors, social workers and child life specialists surveyed say they believe that the wish experience can influence wish kids’ physical health.
  • 98% of parents feel the wish experience gives them the opportunity to be a “normal” family again
  • 92% of volunteers feel an increased desire to give back and help someone else’s family

Friday, September 6, 2013

More Every Day

13,500 children are diagnosed with cancer every year.  36 every day.  1 in 330 Americans will be diagnosed with some kind of cancer before they are 20 years old.
The Pablove Foundation hosts annual symposiums to bring doctors and parents together for discussion on different types of issues in childhood cancers.  So far, they have done this for Wilms Tumors, Survivorship, and Brain Tumors (which we attended thanks to their travel scholarship), and soon for Acute Lymphoblastic Leukemia.  They also run the Shutterbugs program, which connects patients with professional photographers to give them a creative voice through their treatment.