Let me start by introducing you all to something my colleagues
and I are all too familiar with: the reaction roller coaster (allow some time
for eye rolls from all Health+Fitness employees). For those of you that aren’t part of my work
family, this may be a new concept to you.
Let me give you a quick synopsis:
when presented with change, we all go through six different stages in
our transition as we “embrace” the change… and we can progress through these
stages at our own pace, even slipping back and forth along the slopes of this
model. The stages age: Denial, Anger,
Betrayal, Ugh, Bargaining, and finally, Acceptance. When late last week, a large school district
in our county announced that they would be pulling their support of our county
preschool program back to an in-house program, taking all of the kids on IEPs
out of this county preschool program back into their district without having
any details or plans ready to present on this topic, my reaction sped past
Denial, and festered on Anger for at least 24 hours. I was absolutely HOT about this. Since then, I’ve had some time to think about
exactly how to react and how to explain to the community what this actually
looks like from a parent of a kid on an IEP.
So I’m not here to point any fingers or place blame. I’m simply making this post so that those of
you on the outside understand what DOES happen to kids on IEPs all over our
state… and what we’ve come to know here in Shelby County. And finally, I’ll give you all a glimmer of
hope – teaser alert: I’m solidly
standing on “Bargaining” right now. I
don’t see myself moving past this, though.
First, let me share a few stories of what is perfectly
acceptable outside of Shelby County. I’m
not saying anything bad about these situations, but I don’t think parents in
Shelby County know how different our situation is here. For my friend living in an adjacent county,
she brings her son (on an IEP) to his half-day preschool and they set goals
just as we do. She’s been told on
multiple occasions that she should be conservative in her goals for him because
holding the therapists accountable for meeting those goals seemed tough. On top of his half day preschool, this family
takes this little boy to an off-site therapy program at a local hospital for
2-3 appointments each week. They also
hire a private physical therapist to come out to their house to give their son
additional PT because what he’s already getting isn’t quite cutting it. Over the summer, this family has their little
boy enrolled in another private therapy program that costs the family about
$300/ month. This is a healthy, good
example. This is a little boy that’s
doing well and has parental support that is fighting like crazy to keep him on
pace with his peers. But were you
keeping track of how much of his therapy had to be done outside of school
hours? How much of the therapy his parents
were transporting to and from? Almost
ALL of it.
Here’s what’s different at Shelby Hills: Ellie goes to
preschool half days and is transported to and from school (I know that not all
kids qualify for transportation… but some do).
Ellie gets 1:1 sessions of Occupational, Speech, and Physical Therapy
every week. She also has sessions where
OT and ST push into her classroom and do sessions for her entire class (twelve
kids) so that they’re all learning key concepts together and they have gym
together as a class where they practice specific things worked on in PT. Now that she’s out of Early Intervention, she
does not have therapy over the summer, so we do have to supplement there… and
we’ll likely take the same route as the family listed above next summer with
the specialized therapy – but for the nine months of the school year (and
through all of the Early Intervention program), we never had to go to a single
outside therapy session. And the note on
IEP goals: when we sit through IEP planning and meetings in the spring, I’m
sometimes shocked with how aggressive the goals are that Ellie’s therapists are
setting for her. However, these are
people who know her very well – they work with her every week (no contracted
out, rotating faces here). As for this
year, she’d met all but one of her IEP goals for this school year by the time
we met for our first parent-teacher conferences. While many programs would check the box as
complete, Shelby Hills said, “Okay… let’s set the bar higher. She can do so much more.” So in October, we were already revising the
IEP goals for this school year and shooting higher – suggestions offered by her
therapy staff. Does this mean more work
for them? Absolutely! Because, let’s be honest, I’m a very busy mom…
we spend our free time cuddling and playing… not practicing walking up and down
steps. The credit for Ellie’s success
belongs firmly in the hands of those therapists who know her well and push her
a little further each and every week.
Does the state mandate that Ellie have 1:1 therapy
sessions? Nope. Does the state mandate that her class size in
Shelby Hills only have 12 students in it?
Nope. Here’s another fact: Shelby Hills has a 1:1 ratio of typical and
non-typical students in their classrooms.
So in a class like Ellie’s, there are six kiddos with some form of
special need (likely on an IEP) and six more kids in that classroom that have
no special accommodations (typical learners).
This classroom has one teacher (holding a master’s degree in special education)
and a paraprofessional. Some classes
have additional aides in the classroom, too.
So the ratio of teachers to students is no higher than 1:6. That, my friends, sets these kiddos up for
plenty of individualized attention and success in their most formidable
education years. Do you know how many
kids on IEPs CAN be in a classroom? I
think it’s 20. If Ellie were in a
classroom with 20 kids on IEPs, I cannot imagine that she could even focus, let
alone progress at a noticeable rate. And
in case you’re in our shoes and pushing for full inclusion in kindergarten, it’s
crucial that Ellie sits in a classroom where 50% of her peers are typical
kiddos. This benefits both the typical
and non-typical learner. I can shove
studies down your throat on this if you want… but seriously, just trust me on
this.
I have another friend who I met while attending a class on
how to enhance the educational success of children with Down syndrome. In talking with this mom, she told me about
her son, now in first grade, and strictly in a special education
classroom. When she started explaining
how this happened, she said that when the district came out to assess him for preschool
(this is called an ETR: Evaluation Team Report), they “couldn’t recognize
American Sign Language as a legitimate form of communication”, so they rated
him so poorly that he wasn’t able to attend a preschool classroom with typical
kids and as a result, wasn’t able to attend kindergarten in an inclusive
setting, either. This mom went on to say
that at the time of the ETR, her son was not quite 3-years-old and knew over
200 words in ASL. And they said that he
couldn’t communicate. I looked at her
with what surely was the most horrified look in my eyes. Ellie was three at the time and signing about
150-170 words… communicating fluently with us through sign. Kids with Down syndrome are generally very
late talkers – Ellie especially so because she spent so much time completely
silenced by her trach. We worked our
tails off learning sign language and teaching her as much as she would pick up…
and boy, did she pick it up. At three,
when she finally started to sound out a few words with her mouth, we kept
signing, but let the ASL drop off a bit.
When we enrolled in Shelby Hills, Ellie was assigned to a classroom with
a paraprofessional that can fluently speak ASL.
She was literally speaking sentences in ASL to Ellie at open house… I
was in tears. Instead of closing that
door on us… and putting us in the position that this other family was put in…
they made arrangements so that Ellie could thrive. Furthermore, Ellie’s class learned to count
and fingerspell the alphabet. Her
classmates all learned enough ASL to communicate with her last year. That’s incredible, y’all! Incredible!
I’m still heartbroken for the family whose son’s vast vocabulary was
written off and they were told that ASL couldn’t be recognized as a viable form
of communication. But the reality is…
this stuff happens… more often that you’d ever imagine. That same district would never tell the
parents of a child with hearing impairment that same thing, I guarantee that…
but for whatever reason, they felt like it was okay to say to a family whose
child had Down syndrome. Side note, that
little boy is talking fluently, just like his peers, now… but is so far behind
his typical peers and has never been in a classroom with typical peers… so his
parents aren’t comfortable making the transition out of a specialized
classroom. Heartbroken.
I have stories like these for days. Stories where other districts were working
within the state guidelines… or justifying themselves just enough that parents
felt like they didn’t have other options… and the services rendered were not up
to par with what we’re used to getting at Shelby Hills. Can I share just one more story? This is a story from right here in Shelby
County… but not from preschool. This is
a story about the dedication of staff at Shelby Hills (someone on staff that
works with both Early Intervention and Preschool). There’s a family in our county who has a
little one who was doing great with therapy… but wasn’t growing much at
all. This little dude just wasn’t
getting any bigger, despite lots of efforts from therapists and his
pediatrician. He was referred to a
specialized feeding team at Cincinnati Children’s hospital. When his mom told his Occupational Therapist
about this appointment, the OT asked if it’d be okay if she came along. For those of you not from our area, we live a
full two hours away from Cincinnati Children’s hospital. And for those of you confused at why OT would
want to go, when babies qualify for Early Intervention services, OT usually
serves as a feeding therapist for a long while, if needed. Basically, this therapist was offering to
drive all the way down to Cincinnati to attend this appointment for her patient
so that she could meet the feeding team and make sure that she was on the same
page as the feeding team. She could
share information with them to let them know what they’d tried from an OT
perspective and they could give her pointers on how she could customize her
treatment plan to better serve this little guy.
If you’re not completely amazed right now, you weren’t paying
attention. This OT went way, WAY out of
her way… far beyond the expectation of her job role to make sure that she would
give the absolute best care to this little boy and his family. Why did she do this? Because it’s not about her at all. This same therapist came out to our house in
the evenings when she was doing feeding therapy with Ellie because we were
struggling with how Ellie was eating for one of our nurses. She worked late and flexed her schedule to make
sure that she was able to meet with our evening nurse and get Ellie’s feeding
straightened out for us.
So, are we spoiled in Shelby County with the service we’ve
gotten at Shelby Hills? Without a
doubt. We are absolutely spoiled. But I don’t think all of the parents here
know this. I don’t think they know what
losing a resource this great actually means. But on the flip side, do I think Ellie deserves this kind of care? You can bet your butt I do. Without a doubt. I’ve already been asked why I care so much about this change… after all, Ellie only has
one (maybe two) more years of preschool left and we’re not even in the school
district that’s impacted by the recent decision. I care – I care with every fiber of my being
that all of the kids in the county have the care that they need – not the
minimum level of care that they have to have – but the amazing, over-the-top
level of care that they really do need to thrive in life. Even if Shelby Hills were able to function at the same capacity even after this change happens (which is unlikely), I still care so deeply... because it's about those kids.
The problem with some district officials, I think, is that I’m
not sure that they look at Ellie and really SEE her. When you look at Ellie, do you SEE her? Not just as a cute kid with a
disability. Not just as an obstacle in
the classroom. Not just as a means to an
end. Certainly not as a solution to a
budgeting concern. Not as a dollar amount that the state will send to your district for offering her a certain level of services. Do you instead see
her as a person full of potential, hopes, and dreams? Do you see her as someone who deserves
MORE? More than the minimum
necessary? More than what the state
mandates? More than a few minutes a
month of specialized therapy?
I can promise you that the staff at Shelby Hills not only
sees her as a child with hopes, dreams, and potential… they treat her like a
child who has opinions and a voice that matters. They treat her like a child whose complex
history matters, but also as a child who is capable. Capable of academic success and real
friendships with all of her peers.
Worthy of dignity and an abundance of attention. You see, parents… especially parents who are
directly impacted by this change – those who ARE in the district impacted… the
good news here is that you have a choice.
You have a choice when you sit through your IEP meetings. Your child has a right to attend school in
the Least Restrictive Environment. So
while this is all very daunting. Know that
you have power – you have the power of bargaining here. We can ensure that our kids still get the
utmost care – the level of acuity they deserve.
When you’re staring down your first (or next) IEP meeting, ask yourself
the following questions. If your
district isn’t able to check the boxes in the way you feel is LEAST RESTRICTIVE
for your child… then you have the right to keep your child in the school that
does provide these things. As parents,
you absolutely know what is best for your child.
- What is the teacher to student ratio in your classroom?
- How many aides are available in each class?
- What resources are readily available for non-typical communication? ASL trained staff/communication devices, etc.
- Is your classroom handicap accessible?
- What is the ratio of typical to non-typical kids in your classroom? (remember, if you plan to do full inclusion in kindergarten, this is a very BIG deal)
- Is there a nurse available full-time in the building? (this is more of a concern if your child has any special medical equipment/needs… this is a biggie for us)
- How many hours per month will my child have of 1:1 OT, PT, and Speech? (not combined therapies… and NOT combined minutes with other students… that’s important)
- What kind of modification ideas do you have for daily tasks? (I have some examples of what they’ve done for Ellie if you’re interested)
- Ask to tour the therapy rooms to make sure the environment seems engaging and age-appropriate.
- Will my child be working with the same OT/PT/ST throughout the year?
- When/if my pediatrician orders additional therapy hours, how will that be handled in the school?
This is not an exhaustive list… just some ideas to get you
thinking ahead of time. I am picking the
brain of a friend of mine who is a lawyer specializing in inclusive education
advocacy to create a full list of things you may want to think about. Contact me if you want a copy of that to use
as you prepare for your IEP. I do plan
to post again on the benefits of an inclusive classroom. Until then, friends, thank you for reading
along and thank you for hanging in through this lengthy post. And know - I haven't even scratched the surface on the list of ways that Shelby Hills, Wilma Valentine, and the Shelby County Board of DD has gone far above and beyond their call of duty for the families in our county. Keep fighting the good fight. Much love!
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