Does your kid have an IEP? Do you have an advocate? IEP or a
504?
Do you understand any of these questions?
Don’t worry, about 10 months ago I didn’t either. I remember first hearing terms like IEP, educational advocate, and 504. I would do my best to make it
seem like I understood, when actually I felt like a clueless, incapable,
stressed out, drowning-rat mom who wasn’t possibly capable of handling the
realities of parenting this child. Whoops, I mean, um, did I just say that
out-loud?
I’m hoping if I tell you a bit about my own IEP journey, it
may be helpful for you while going through your own process. First of all, I’ve
recently talked with some of my friends who do not have children, or who don’t
have special needs children, and I’ve found that things like IEP’s and
educational advocates are (surprise) not things most people are born knowing
about. This is complex, difficult, and exhausting stuff. So take a breath, and
cut yourself some freaking slack. Pour a glass of wine, because here we go!
Before I dive into this, I’d like to give a disclaimer (yes
I’m an HR lady and I really like to qualify things with disclaimers). I’m not a
special education or autism expert. This is one mom’s own experience with my
child, who has Level 1 Autism and Anxiety. 😊
IEP stands for Individualized Education Program. An IEP is a
legal document that is developed for each public school child requiring special
education. Here is
some useful guidance available from the US Department of Education about IEP’s.
An IEP is developed in cooperation between the parents of the child, a case
manager or representative of the school district, the student’s teacher(s) and
possibly principal, and any provider of related services to the child from the
school district (in Sully’s case, this included the speech therapist,
occupational therapist, special education specialist, and school psychologist).
Parents also may choose to bring an educational advocate, social worker, and/or
lawyer (more about this below). Yes, that’s right – Sully’s IEP meetings have
had 10 people present. The IEP details the educational goals for the child, and
any special accommodations the school will make for the child. Here’s the thing
– in the US, public schools are legally required to give a child any accommodations
she requires. If they can’t provide them in their district, they must send the
child elsewhere – to a different public school district, or even to a private
school. The district also must provide transportation to this different school,
and if it’s private, the school district pays the tuition. A 504 plan is
similar to an IEP, in that it’s a document developed to outline the services to
support a child with a disability. But, in general, children with 504 plans do
not require individualized specialized
instruction, as do kids with IEP’s. I’m not an expert on 504 plans, because
Sully doesn’t have one. But I found this
useful comparison of IEP’s and 504 plans.
As you might imagine, the parents often want the child to
have a lot of services, and the school district doesn’t necessarily want to pay
for those services. So what often happens is that there are arguments between
the two groups about what services will be provided. In order to even get to
this point, the student must have a diagnosis qualifying them for the IEP (such
as autism). In order to get this diagnosis, most people have gone through a
Neuro-Psych evaluation, which results in a 20-30 page document. To get the
Neuro-Psych evaluation, Sully waited on a waiting list for eight months. Then
the school district orders a whole menu of tests they do within the school.
Then, as the groups are negotiating, there may be additional tests completed to
get second opinions, to support the child’s need for services.
So, as the parents are arguing with the school district for
more services, what I’ve noticed sometimes happens is the poor teachers and
specialists are caught in the middle. I truly believe that teachers are some of
the coolest and best people. I mean, my kid’s teacher is just great, like
everything you could ask for in a Kindergarten teacher. You can tell she loves
her students and she loves her job. And she’s in this meeting where people are
writing out a legal document about how she is supposed to do her job. What a
freaking nightmare for the poor woman…I’m sure she’d like to give Sully
everything he needs, but not only does she have the limited resources of the
school district, but she also has 15 some-odd other kids to worry about in her
classroom.
Now, in our case, after we had the diagnosis we sent the
neuro-psych evaluation to the school district’s special education department,
requesting they begin the IEP process. They then sent us a meeting notification
for the first IEP meeting. We went to that meeting, discussed the additional
tests they wanted to order for him within the school district system, and then
after those, they sent us the results. They also sent us a second IEP meeting
notification. We went to that and discussed the findings of the testing. We
discussed if everyone in the room agreed with the diagnosis of autism and
anxiety, which (thankfully) they did. We discussed (a nice word for argued)
over what goals and services we’d like on the IEP. We also went through a
checklist to identify if Sully might be a target for bullying. Everyone agreed
he was, and we talked about different ways the staff would proactively address
this. I am, of course, very grateful they addressed this now, before it became
an issue, but I swear I literally heard my heart break in the meeting. A week
or two after that meeting, we received the draft of the IEP via mail. We
reviewed it with our advocate and sent in a partial acceptance along with the
parts we’d like changed. Our advocate also recommended I schedule two
additional evaluations, speech and O/T, to get second opinions. We now have a
third IEP meeting scheduled, to discuss that version.
Now let’s talk about educational advocates. When Sully got
his diagnosis, my boss, a father of four, gave me the advice to “get an
advocate.” I’m glad I took his advice, because I really don’t know how I would
still be alive with all my hair the same color without the advocate. So what is
an educational advocate? They are individuals specially trained in disability
law, are very knowledgeable about the IEP process, and the child’s school
district. Your kid’s advocate is just that – their job is to argue with the
school district about what services your child needs. They will also help you
to understand the IEP process and advise you about the document. You will have
to pay this person, but in our case it was worth every penny.
Now I am not a person who becomes easily emotional, especially
not in meetings. In my job, I frequently find myself in difficult situations –
I discipline people, I council them on poor work performance, and I help them
with personal and emotional problems. I have fired quite a few people. But I
never become emotional in these situations. I am VERY good at
compartmentalizing my feelings. Even in my personal life. I remember when I was
pregnant with Sully, and my husband Kevin and I created a will and bought life
insurance. People who had done this before asked me if I cried, remembering how
hard it was to talk with your spouse and lawyer about what would happen if the
other person died. I was embarrassed to admit that no, the thought of crying
never occurred to me. To me those things are black and white – business transactions
which make rational sense. There’s no need to be emotional. I remember reading
that when a woman sleep trains a baby, and the baby begins to scream and she can’t
go in and comfort them, every ounce of her womanly instinct screams out to go
and comfort that baby. When we did sleep training with Sully, I sat at the
kitchen table and had a glass of wine and calmly timed how long it took him to
stop. I had read the book, I had a plan, and I knew it would work (and it did).
It was black and white. I had compartmentalized my feelings – put the pain
outside of myself. I think that’s what I do when I run long distances. Often
when I’m on a long training run, I suddenly realize I’ve completed 20 miles,
and I don’t recall the last five. I feel surprisingly ok, and I complete the
run and walk through my front door, and suddenly feel like I’m going to die, my
body screaming out from every pore “WHAT THE HELL IS WRONG WITH YOU, YOU CRAZY
WOMAN!” I guess I remove myself from the physical task of running 20 miles, I
just do it, and contemplate the pain afterwards. When I terminate someone’s
employment, I do the same thing. I go home at night and think about it, and my
heart goes out to them.
When the school district sent me the results of Sully’s
testing, I felt the familiar sense of dread I’ve felt every time I get a
Preschool progress assessment, and when I saw the Neuro-Psych evaluation. The
feeling that someone was about to tell me everything that was wrong with my
baby. The feeling that they were going to say, like his Pre-school teacher had once
said, “Sully, he’s just...different.” I sat reading the results and felt like
someone was ripping out my heart, Game of Thrones HBO style. I told Kevin that
I felt like someone had cut out my heart, put it on a piece of paper, and
assigned it scores.
Then we went to the IEP meeting and discussed the scores. So
I got to feel like they had ripped out my heart, laid it on the table, and
argued about how they would, and would not, make it better. I remember laying
my hands on my thighs and squeezing so I wouldn’t scream. At one point, I
completely shut down, and trusted our advocate, Summer, to take care of it.
Summer is also Sully’s therapist, and she knows him, and us, well. I trusted
her completely to take care of the situation, and she did.
Part of an IEP meeting which was startling, and disturbing
was that we had to fight our parental urge to argue that Sully is the complete
best. For example, when someone asks me if Sully has a hard time transitioning
from task to task, my maternal instinct is to argue that Sully does ok, as long
as you prep him ahead of time and handle it appropriately it really isn’t a
problem. But Summer taught us that if you say that, the school district will
then argue that he needs no social emotional interventions to help him transition
in the classroom. I had to catch myself and allow his advocate to speak up and
ignore my mom voice screaming “MY KID IS AWESOME AND YOU ALL ARE CRAZY, THERE
IS NOTHING HE NEEDS TO WORK ON HE’S THE BEST!!!”
So yeah, I’m not sure what’s harder, running a marathon or
the IEP process. It’s tough. But, looking back, I wish someone had told me that
it’s ok to not understand it at first. I am grateful I received and listened to
the advice to get an advocate. I’m grateful we live in a wonderful school
district with amazing teachers and administrators. And I’m really grateful for
wine. So my advice is an educational advocate, and wine. Lots of wine.
