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.


Mommy2CJ said...

Yay so glad it went well! Fantastic news.

xoxo Jamie xoxo said...

This is SUCH fantastic news! And you offer invaluable suggestions for others! Awesome!!!

SaundersLM2 said...

I was so nervous for you guys when I saw this link. I can't explain how happy I am for a little girl that I have never personally met. I have been following Scarlett's story since the very beginning and her progress is astounding and inspiring.

DiJe said...

Amazing! I am so grateful your team was awesome and that you didn't need to fight. Happy you are able to breathe a bit.

alex said...

This was so wonderful to read. I never really understood exactly what went into an IEP and I know Scarlett's was more involved than some. But it warmed my heart to hear that SO many people wanted to make sure she was taken care of. Go Scarlett!

child of God said...

Amazing! Thank You Father!!! I'm so glad everything went smoothly and Scarlett is well provided for. :) I LOVE have God answers prayer.


Unknown said...

This post was incredibly heart warming to read. It is amazing that so many people are going to be working so hard, happily and as one giant team to do everything they can for Scarlett. And that is exactly what she deserves. The amount of time and love you guys are investing in making sure Scarlett has everything and everyone she needs to reach her full potential is incredible. I am a huge fan of your family...

CEZ said...

Fantastic news! Your mom told me all about your detailed preparations for this meeting and how Scarlett was doing at the new school for those two weeks. I am so thrilled that the outcome was to yours and her advantage. All your hard work did not go unnoticed I am sure. You did everything right and got the answer you wanted. Scarlett is such a sweet sweet little girl and it felt like I was meeting a celebrity when I saw her for a few minutes at your moms school. Thanks for bring her Teri! I thank God for your faithfulness in Him.

Carrie said...

I am a preschool special ed teacher (itinerant) in PA. In PA the district do not handle preschool special education, Intermediate Units handle them. We split up EI In PA, it is infants and toddlers as a separate entity and preschool as a another one. The IUs are starting to put their foot in the pool of infant and toddlers too. In anycase, it is not as unusual for private placements at the preschool level, especially for multiple disabilities. At least in my state, we often take the parent's requests first ( even if I am not always sure it is the right thing). In your case it is of course the right thing to do! I am glad it went smoothly. School age is a whole different story, I previously taught in school age autistic support and that is a whole other ball game. You are likely safe as far as placements go until Kindergarten. I will have to say though, it is nice to hear that you prepared so well for the meeting. I am often floored by the parents that never read any of the reports. I also loved all the things you brought to the meeting.

Carrie said...

Oh I was also going to add that for kiddos that often receive a large amount of services, private placements can save money because they are tuition based. In the district they pay for each service, it is not a package deal. When I taught multiple disabilities, districts encouraged private placements for this reason.

Brandi Wecks said...

@Carrie - that sounds pretty different from what's happening around here. We know family after family that has struggled with even preschool IEPs, since our districts often provide a classroom for preschool special needs - our very small district has about 5 classes just for 3-5 year olds. Her current school is very used to having kids leave at 3 because they very rarely can get a district to justify it. We're very happy to have had things go well for Scarlett.