Archive for the ‘School’ Category

The Line

Today was Rowenna’s last day of Montessori preschool. For the end of the year program, parents joined their children in a circle as they sang their favorite songs with their teacher. The children either sat on carpet squares or on their parents’ laps in the circle, singing and performing hand actions.

Rowenna? She was walking around inside the circle, smiling and happily gesturing along with the songs. She was the only child moving around. It was apparent that Rowenna wasn’t doing it for the attention (the “awww” factor from the audience) but from a need to simply move her body.

Since this is a Montessori school, her teacher did not try to have Rowenna sit down. As long as a behavior is not harmful to another child or too distracting for an activity, children are usually left to make choices like this. (Her teacher had also pre-emptively let me know that Rowenna would probably do this and that it would be fine with her.) And while Rowenna was the only one standing and the only one moving, she wasn’t terribly distracting. In fact, I got the distinct impression that her classmates are used to her doing this, and even heard a delighted exclamation or two from her classmates of “Look at Rowenna dance!” I’ve learned more than once over the course of this year that children really are so accepting of differences and the things that might cause an adult to raise an eyebrow are simply seen as a classmate embodying her joy.

But while watching my girl soak up this music and participate in her own way, I stole a few glances at the other parents. Most were absorbed with their own children – and rightfully so – but there were a few casting quizzical glances at Rowenna and occasionally looking back at me.

Clearly, my child was not demonstrating age-appropriate behavior. Even the 18 month olds in the group were sitting quite happily as they sang. Clearly, there was something different about Rowenna, and in those quizzical glances I could see them trying to figure it out. Rowenna was crossing A Line by not sitting with the other children, but she was also quite obviously happily engrossed in her movement.

Sometimes I wonder about The Line. The Line between allowing Rowenna to simply be Rowenna and helping her understand social boundaries and customs. Maybe that seems too much to consider at such a young age, but considering Rowenna’s slow – but steady – learning curve, it’s good to plant little seeds ahead of time and to watch them blossom later.

Where’s The Line between simple compliance and autonomy? What do I take from her if I insist that she simply comply? But what do I take from her by allowing her to act on impulse? Where is The Line, and how do I successfully straddle it so Rowenna has some autonomy, but also some understanding of what it means to live in a society, to be a friend, to be a classmate? When do I meet her where she is developmentally, and when do I ask for age appropriate behaviors?

Is Montessori, with its safe environment for exploring things of interest to Rowenna, the best choice for next year? Or would a more structured environment that functions on the idea of compliance be the better choice?

How important is it that Rowenna sit in the circle – or is it more important that all children have the freedom to dance with her in the middle of that circle? (For what it’s worth – if any child had wanted to join her in that this morning, they would have had the freedom to do so.)

And I suppose that brings me back to what we’ve been turning over in our minds all year – what is the best school environment for Rowenna? What is the purpose of a 3 year old attending school? Do those reasons apply to Rowenna and if so, in what way?

And as always, I’m left with many questions and nearly no answers, but time enough to figure it out.


Chapter 3: The IEP

We have an IEP for Rowenna. I’ve written this post about 5 times, each looking at this from a different angle, each sounding a bit bitter about the whole process and inspiring me to try again for a more pleasant report. I’ve given up on trying to spout sunbeams about the IEP (feeling like perhaps I’ve been a bit bitter about the overall process thus far), so here’s a picture of Rowenna to get you going.

Communing with Sunbeam Blog

The basic details of Rowenna’s IEP: she qualifies for special education services through early childhood education due to her speech delay. At this time there is no way to test her cognitive ability, but her speech delay is significant enough on its own for Rowenna to access services. She was recommended for 4 mornings a week, with each of the 3 therapies once a week. Her IEP is an ok mix of goals we chose and goals the IEP team chose, and since the team’s goals are in no way harmful or distracting from our preferred goals, they remained in her IEP.

But here’s what it boils down to, the thing I’ve put in each of the many drafts of this post: the need for tangible, testable IEP items for “accountability” and “progress” make it extremely difficult to include much of what my family values to the IEP.

An example of one of Rowenna’s goals: “will kick a ball 2/3 times with 75% accuracy, on 3/4 attempts.”

Who. The. Heck. Cares?

Not me. (And frankly, since she’s half mine…sweet girl has nature fighting her on this one. Sports are absolutely not my thing.)

Now I’ll have a dozen special ed teachers, therapists, and other professionals explain to me why this is. Please believe me when I say that I understand the processes, mechanisms, and laws in place that result in IEP goals like that. I also understand the theory behind goals like that. I’m a former teacher married to a teacher. I got the training, I used to live it. My husband lives it every single day. I get it. Trust me.

What I’m saying, bluntly, is that I really don’t care. As a parent, I don’t care. As a human being, I don’t care. And it’s time that the education system sat back and listened to students and families about this stuff, and created policies that would save all of us this ridiculous song and dance. Goals like this don’t mean very much. If she kicks the ball 2/3 times with only 65% accuracy, to me that is still success: she can kick the ball. Obviously. Maybe she’s just bad at sports. Or she was cranky. Or didn’t want to kick. Or didn’t feel good. Or the transition from what she was doing (possibly a much loved activity) to an artificial testing environment didn’t go smoothly. What’s the difference between 65% accuracy and 75% accuracy? But in terms of her IEP, it would be considered failure to meet the goal and we would have to decide whether or not to place that goal on next year’s IEP. (Please bear in mind that I am using the kicking as a single example. There are others like this in the IEP.) Goals like this set up a lot of testing opportunities; school should be empowering, not an endless series of tests – a combination of opportunities to grow and opportunities to shine.

I know we could have “fought” goals like that and demanded others. We made a conscious decision not to do so at this time.

Since at best the arbitrary goals are a chance for Rowenna to show off her skills and at worst a waste of everyone’s time, we left them in and asked for things we really wanted for Rowenna. We asked that signs be counted as words and that she be given the freedom to express herself using signs if she chooses. We asked for social goals – things like approaching other students, initiating communication, collaborative play. We also asked that any testing be done in the classroom setting rather than an unnatural pull out. (Really, skills don’t mean anything if you can’t do them in the setting in which they need to be done. I don’t care if she can kick the ball with just the PT in an empty gym, but I do care if she can do it while playing with her friends.) None of this was an issue for the team.

In the end, we are left feeling…underwhelmed. I was not expecting a “fight” and definitely did not get one. It’s a delicate dance of advocating for your child, and you could sense the team’s “dance” as well. We were all polite and doing what we each thought was best for Rowenna. We felt our goals and needs were addressed. Rowenna had fun drawing on the Smart Board (though that was kind of a headdesk moment for me when the OT exclaimed that wow, she really does know how to draw horizontal and vertical lines). The IEP is fine, a simple guiding document for the year to come. I suspect Rowenna will meet several of the goals before school even starts, but we can address that when and if we need to.

And that’s where we leave it for now. We have also applied for Open Enrollment, our state’s program that allows children to enroll in the public school district of choice. We would prefer that Rowenna attend the neighboring district, for many reasons I will get into if we are accepted. We also applied for a scholarship for next year’s Montessori tuition.

In the meantime, we have 7 weeks left of Birth to 3 and Montessori, then a summer free of school, therapy, and other commitments. Looking forward to the coming months!

Chapter Two: In Which Rowenna Has an Evaluation

Last week, Rowenna had her formal evaluation with the local school district. This evaluation will determine whether or not she qualifies for special education services.

There are a few possible outcomes in our district. Children can qualify for “full time” schooling (4 days a week, about 2.5 hours each day), part time schooling (2 days a week, about 2.5 hours each day), or therapies only. As parents, we also have a choice – if they recommend 4 days, we can place her for just 2. And so on.

We already know Rowenna will qualify for services, and she will likely qualify for the highest level of intervention – 4 days a week of school and therapies. In many ways, this evaluation was simply a formality since her diagnosis and needs are relatively concrete. A friend described it as a “means to a means.” It was just an opportunity to get her ticket to the next step in the service system. The results don’t really tell us much about Rowenna herself, other than the obvious: she has a developmental disability and does things differently than her same-age peers.

And even though I know the evaluations mean basically nothing about who she is, and I know better than anyone my girl’s strengths and weaknesses, it is always a bit of a blow to have a stranger point out all the things she can’t do.

What is particularly bothersome is the know-it-all attitude we keep coming across when Rowenna has an evaluation. I’m all for professional confidence, and professional expertise, and I defer to it when warranted  – but what I am not interested in is an “expert” telling me that my child doesn’t “really” have a skill, or that signs don’t count as “real” words.

As Rowenna’s mom, I know her quirks. For instance, I know you cannot get anything out of her – at all – if she is not allowed to first briefly explore a new environment and approach new adults on her own terms. And in some ways, I think this is a pretty excellent skill, and something a lot of people would want to do. When you go to a new doctor, don’t you sort of nervously look around the exam room while you wait? Check it out, look for things you don’t know about? When you are at a party with a lot of strangers, do you like it when a bunch of them rush up to you at once and ask rapid fire questions?

Why shouldn’t my child be allowed a few minutes to simply see where the heck she is and make sure she is safe?

The evaluation started literally as we walked through the classroom door. The occupational therapist picked Rowenna up and sat her in a chair, expecting her to immediately start working on a puzzle. I sat down across the table from Rowenna so she could see me, and said Rowenna would attend to tasks a lot better if she were allowed to explore the room first.

Well, this was ignored and sure enough, my girl refused to do anything. I’m just her mom, right? What do I know? I said it again and they reluctantly agreed. After a few minutes of looking around the room and checking out the people in it, she got right down to work.

For over an hour, she moved from task to task, surrounded by five adults, all taking notes and talking to each other and to Rowenna. And I mean literally surrounded – there was maybe a foot of space between Rowenna and the adults. It was chaos. I was overwhelmed; I can only imagine what Ro was thinking.

They asked me questions, too, as they went – some answers were met with a smile and a nod, others were met with a raised eyebrow and a glance at another therapist. They asked Rowenna to do a few things that I’ve seen her do dozens of times at home but she wouldn’t do on command for them. She can be stubborn, like me, and she doesn’t like to perform on command like that. The therapists didn’t really seem to believe me when I answered honestly that she could do something she refused to demonstrate, but of course they were oh so quick to believe me when I said she couldn’t do other skills they asked about.

Sometimes I really wonder what happens during therapist training. Are they taught a child with Down syndrome is simply an unresponsive lump? Hearing that my nearly 3 year old has a certain number of signs and spoken words or that she can walk down stairs while holding a railing should not be met with unmasked surprise or skepticism. And this has happened time and again throughout the last 2.5 years. I want to believe therapists mean well but yet…here we are, people not believing that my child is capable of some age-appropriate skills or behaviors.

While all that was going on, I was supposed to fill out a 20 page packet that clearly outlines all the things Rowenna can’t do. Question after question, even spots to further clarify what she isn’t doing. It is exhausting to do this. I wonder if parents of typical kids are ever asked to sit down and detail what their children can’t do. With each question, I racked my brain: does she do this? Consistently? Without help? Is this something I should have been working on for months or years? Is it my fault she can’t do it, or is she just not ready? Is she not ready because I haven’t offered the opportunity yet? Will she ever do it, and does it matter? I think I have a handle on Rowenna’s abilities, and every once in a while we have to do something like this and it’s like a sucker punch. I ended up asking if I could just finish it at home and send it back.

The whole afternoon was exhausting. Rowenna was asleep before I even pulled out of the parking lot, and I can’t say I was in a great mood.

My issues with how the evaluation was conducted aside, herein lies what makes me worry so much about placing Rowenna in public school: can I turn her over to a team and a program that focuses on her deficits? Will this be a team willing to see past the can’t in order to see the can? Is this a team who is open to the input of the people who love and know Rowenna? Is this a team willing to be…a team? Not just a set of experts “treating” Down syndrome? Will they value the things we value for our daughter and our family?

In two weeks we will sit down with the members of Rowenna’s official team and learn the answers to all these questions. We will finalize her IEP (the legally binding contract between our family and the school district that outlines and promises specific services) and then we will have the next few months to decide what will be best for Rowenna.

In the meantime, I will continue to consider this experience simply our “means to a means” – a ticket, a next step. The sting has already come and gone. Life has moved on. And stay tuned for Chapter 3, in which we sign off on an IEP.

Chapter 1: In Which the School District Meets Us

Disability World is full of transitions. Most of them are somewhat artificial – they are driven by funding streams and federal laws rather than a specific need. Rowenna is quickly approaching one of these transitions. Right now she is in the Birth to Three program. This is exactly what it sounds like – she started nearly at birth and will officially transition on her third birthday. This program is our current connection to the vast service system in place for people with disabilities. Our case coordinator helped facilitate our application for our Medicaid waiver, our application to a separate funding stream (we are about two years into a five year wait) that will help us pay for services not covered by insurance or Medicaid, and provides us with information about other state and county programs available to us. They also provide Rowenna’s in-home therapy.

So now it’s time to begin the transition to public school. In Disability World, the funding stream makes an abrupt shift on the third birthday from Birth to Three (or similar program) to the local public school district. And by abrupt I mean if Rowenna’s birthday is on a Tuesday, Birth to Three will provide her therapy on Monday of that week and the school district will be responsible for her therapy on Tuesday. No gentle transition to soften the blow, to help a child get to know a new team of teachers and therapists, or for parents to take in this new stage of life.

Before we make that transition, Rowenna will undergo a series of evaluations to make sure she is disabled “enough” to qualify for special education services and therapies. These evaluations will also be used to decide what level of services she can receive in the coming school year. (Since Rowenna’s birthday falls in the last week of school, we are opting to not place her in school this year and wait for the beginning of the new school year.) After the evaluations, we will sit down with a team from the local public school and write out an Individualized Education Plan (IEP). This will be the guiding document for Rowenna’s first year of public school, should we decide to send her in the fall.

Going into this meeting, I’d heard absolute horror stories about how these have gone for other families. The kind of stories that make you wonder why certain people choose education versus, well, any other career on the face of the earth. I’d also heard some success stories, and I hoped I could count myself among that group before this whole process was done. I tried to strike a balance between gearing up for a bit of a battle and going in with an open mind.

In my county, the first of these many meetings happen in the child’s primary residence. They want to meet your child in an environment that is safe and natural to the child. In my opinion, this is a good first start. It shows an understanding of children at this age, and an understanding of the obstacles some families face in simply leaving their homes (medical equipment, health concerns, transportation, etc).

As is the way of toddlers, Rowenna had an epic meltdown just before the meeting started, so she was not her perky, sparkly self that I know and love. She had pulled it together enough to no longer be howling, but she was a bit sullen and had no smiles for the teacher. I had my list of questions and my favorite pen, ready to take lots of notes so I could remember what we discussed and share with hubby later on.

We spoke about our options for the coming year. We can enroll her for 1-4 days a week, or not at all. We can choose to bring her to school just to receive therapy. We can choose to discontinue therapy. We can have her ride a bus to school both ways, one way, or not at all. She can attend in the afternoon or the morning. So, lots of choices to consider and I am grateful for so many options. To me it represents an attitude of doing what works for the child and the family, rather than what works best for the school.

Then I started asking harder questions and found the answers to be a bit lackluster, though I get the distinct impression that she is rarely asked questions like this so she didn’t seem prepared. I asked why kids with disabilities go to school at the age of three when their typically developing peers stay at home or attend preschool or daycare. The answer boiled down to “social skills and structure.” (From a purely funding/policy standpoint, the answer is: the money needs to funnel somewhere and schools are an obvious and easy choice.)

Ok, fair enough. Not every family works with a structure, and not every family has a lot of social opportunities for their kiddo.

But to me it’s not an overwhelmingly good reason to just go with the flow and put her in school because she’s three and it’s what you do. (Which, by the way, is clearly the choice the school is looking for us to make.)

I asked about what inclusion looks like in our district, and how well supported that inclusion is. I taught – albeit briefly – in this district and my experience was less than stellar. Where special education, support for my students, and support for IEPs was concerned, it was an absolute failure. So I admit to going into this with a bit of a tainted opinion, but there is no way on earth I’m going to allow my child to be in an “inclusive” classroom if it means she’s left there with zero supports and a special education teacher with such a large caseload there are simply not enough hours in the days to support Rowenna. Inclusion is only inclusion if she’s set up for success. Allowing for only the physical presence of kids with disabilities is not inclusion, it’s more like…sight-seeing. Or a museum. Look, but don’t touch.

I was told that inclusion is always the goal, and it’s the “default” for kids receiving special education services. Segregation and self-contained classrooms are available for those students who truly benefit from that environment. She wouldn’t speak to the availability of aides, therapists, special education teachers, or resources because that would be too specific without knowing what Rowenna will need in three years.

Again, fair enough. (Though I still have my doubts about what inclusion actually looks like, given what I know about budget cuts in our district.) To me, it is important that the spirit is willing and the philosophy of inclusion is already in place. We aren’t starting from square one here.

I asked what an IEP typically looks like at this age. It usually involves some social/peer interaction goals, fine motor goals, and speech goals. Gross motor goals if applicable, but likely not for Rowenna at this time.

And again, this all seemed fair and reasonable.

I do have a few concerns. The classroom is full of adults who are constantly interacting with the students (by the teacher’s own description). Between the teachers, aides, and therapists, it is nearly a 1:1 ratio. That honestly seems excessive. In her explanation of the schedule, there did not seem to be much room for independent exploration. Even during “free play,” adults are constantly intervening with the children to make sure they are “working on skills.” This is not what happens in the Montessori environment in which Rowenna currently thrives. There are adults, yes, and they work with the students. But it is not a 1:1 ratio, and they are allowed personal space to simply try things without intervention. Hubby and I believe that this is an essential, core skill for Rowenna – to feel safe to try new things and have the curiosity to do so independently – so it is of some concern that this doesn’t seem to be promoted in her potential future classroom.

I also have a lingering concern about being constantly surrounded by “disability professionals” rather than two teachers who specialize in general child development. In other words, do we want her surrounded by people “treating” Down syndrome and constantly intervening, or do we want her in an environment where she is free to make mistakes and try new materials? Only time will tell what level of support Rowenna will benefit from this fall.

So going forward, it seems we are left with more questions than answers and so much to consider. I am glad that there weren’t any alarm bells going off during this meeting, no obvious reasons to say “oh heck no” to public school. I am glad that when we make our decision for Rowenna, it will be based on what she needs and where she will thrive, not on a disagreement over policy or a clash with a teacher.

Our options for the fall are thus (based on Rowenna receiving a scholarship to continue at Montessori): only Montessori school, only public school, a combination of both, just therapy, or absolutely nothing at all.

Our lingering questions:

  • Where will Rowenna be best supported in her personal development?
  • Where will Rowenna be treated as an individual?
  • Where will Rowenna thrive?

We don’t have the answers to these questions yet. We have some ideas, and today’s meeting certainly gave us food for thought and allayed a few fears I had about the public school system. When we have answers (or at least some answers), we will have a clearer vision for what we’ll do this fall.