An End

We’re nearing the end of an era for Rowenna. In 3 short weeks, my sweet girl will be three and she will finish with the Birth to 3 program. It’s a hard stop – on her third birthday, everything just ends. No transition, no easing into the next step. Rowenna’s situation is a bit different in that we’re going straight into summer so while kids born during the school year would have therapy one day then public school the next, we get a three month cushion in between.

People have expressed concern that she will go “three whole months” without therapy, but we’re not worried, and neither are her therapists. Summer is the best time for natural therapy. She will have plenty of opportunities to run and climb (PT!), dig, draw, and fill (OT!), and chatter up a storm with everyone we meet on our summer adventures (ST!).

We’ll never know if the therapies themselves have made (or will make) a difference for Rowenna. And even after three years I’m left with some lingering doubts about the message it sends to families to have professionals “intervene” from birth.

But what I do know is these three women are family and we will miss them very much, and that there’s something to be said for a team supporting a family in these early years, cheering them on and empowering them.

They have been with us through surgery, hospitalizations, and endless random viruses. They have sent supportive texts and made concerned phone calls when Rowenna would throw us for a particularly wild loop and we all worried together about what would be. They have been with us throughout all my forays into advocacy and through all my chattering stream-of-consciousness monologues in which I wonder and dream aloud about my girl. They have supported us in every choice, every step along the way, never questioning and always providing gentle guidance and support.

And I believe, without a shadow of a doubt, that they care about my girl.

I was out of town at a meeting today so my dad was holding down the fort. He took some pictures for me since he knew we were nearing the end of our time with our team. I kind of laughed it off – my dad is a lot more sentimental than I am – but when I sat down to flip through the pictures, I was surprised to find tears spring to my eyes.

I’ve spent hours upon hours with these women and have always been glad to see them. But it took seeing them through the lens of a camera, in pictures taken by someone else, to see – to realize how they see my daughter.

PT and OT join session.

PT and OT Joint Session

I think they like her. And I know Rowenna likes them. She runs to the door when the bell rings and I tell her Miss D is here. She excitedly peeks into their big bags full of fun things to explore. She is all smiles, all curiosity. Admittedly, there are PT sessions when she seems hell-bent on showing just how good she is at sitting on the ground and not moving – but on the whole, it’s always been a positive experience for Rowenna.

ST Blog

Speech Therapy

So as we finish our time together, I am grateful. I am glad to have had a team who saw only Rowenna and not her deficits. Went along on my crazy ride of no developmental assessments or homework assignments or arbitrary tasks. Made everything about how Rowenna can be a bigger part of our lives, our home, and our community. Smiled, laughed, danced, and made silly faces to make every single session something for Rowenna to look forward to. Listened to my worries about her health. Cheered us on as we placed her in preschool. Engaged her with ever more clever activities and learned to read her little nuances.

And always, always celebrated my sweet girl.

For all of that and more, I am grateful.


Hope Bigger Than Fear

I’m just home from a conference. I spent 2 days surrounded by families and individuals with disabilities at a conference about life in Disability World – the ins and outs of service systems, how to advocate for yourself and for systems change, and discussion of the Big Ideas that cause us to step back and look at those systems with a critical eye. Self-determination was a prevalent theme.

The “dignity of risk” cropped up here and there as well. It certainly goes hand-in-hand with self-determination. I’d argue it’s one of the guiding principles. After all, self-determination is about guiding your own life, and don’t we all sometimes guide ourselves into uncertain situations when we feel the payoff outweighs the risk? And haven’t we all failed at something, only to learn something about ourselves? There is dignity in choosing something for yourself, even if it is risky or ends in failure. For me, the dignity of risk is the ultimate sign of independence – more than having my own home, or having attended college, or driving a car.

Here’s where raising a child with a developmental disability feels a bit different. The stakes of failure seem so much higher. It’s easy to worry, and in that fear, to hold your child back. And frankly, there will be a lot of people around you telling you it’s ok to hold your child back. That it’s better, smarter, safer.

I think about all I hope for Rowenna’s future – for her to be happy, to feel fulfilled, to be an integral part of her community. I hope for her to have real friends and things to look forward to and be excited about. The trappings of all that, the whats and hows, are less important. Rowenna will guide us there. But there are fears, too. What if we can’t figure out a way for her to achieve her goals on her own? What if we can’t find a good team that knows and loves our girl and are willing to support her self-determination? What if we allow her the dignity of risk and she gets hurt – emotionally or physically?

One of the speakers said something I’m going to tuck away for those days when the fear looms big and I want to sweep my little chickie back under my wing: make your hopes bigger than your fears.

It’s so simple, so beautiful and yet I know there will be days when it’s a challenge to remember. But it will be there, and I’ll use it to remind myself to keep adding to my hopes for my sweet girl and her future.

Zoo 1 Blog

Open Letter to NDSS and NDSC

I read that you are seeking information from the community about the proposed law enforcement training program you plan to help implement. As mother to a child with Down syndrome, I would like to share my thoughts.

It seems your support of a training program is a foregone conclusion. Since you feel you must support such a program, I urge you to consider the following as you move forward.

Consider the precedent this kind of training sets should law enforcement officers harm or kill a person with Down syndrome in the future. If the officer involved has not yet received this special “Down syndrome training,” will he or she be able to use that in their defense? Will the three men responsible for Mr. Saylor’s death be able to use that in their defense? When writing this training, please be clear how, exactly, lack of specialized training led to Mr. Saylor’s death. And please be clear that lack of this kind of training is not an excuse for poor decision making.

Consider the precedent this kind of training sets by establishing a false standard for Down syndrome. There is no one set of diagnoses or behaviors that defines a person with Down syndrome. Individuals with Down syndrome share one thing, and one thing only: a third 21st chromosome. Outside of that, they are as unique as you or me. As an example, for each person with Down syndrome who does not mind being touched, there is another who reacts negatively. What will the training teach – to touch or not touch? This could make a significant difference during interactions with law enforcement. Examples like this are many – too many to craft an effective plan for working with all people with Down syndrome.

Training to a false standard of Down syndrome only creates further confusion for those working with this population. A person with Down syndrome will react as an individual, based on his or her individual needs and on the unique situation. No amount of specialized training can teach law enforcement what they should already know: treat people with respect, keep calm, read the situation carefully, and do not escalate unless all other options have been exhausted and the person is an immediate threat to himself or others.

Consider what this kind of training says about the Down syndrome community at large. It furthers the belief that community members require highly specialized training to work with individuals with Down syndrome – an argument often used to deny individuals access to jobs, schools, and other community resources. Just this month a teenager with Down syndrome was denied a gym membership because the gym has no “qualified” staff. This concern is real and immediate. What will the training teach that being a reasonable, kind human being cannot? People with Down syndrome require dignity, respect, and perhaps a little extra time or a little extra support. No one needs special training to work with them, spend time with them, or, in the case of law enforcement, to protect them.

I urge you to please consider these three points as you develop training for law enforcement. Please do not let this become a step backward for the Down syndrome community’s push for independence, dignity, and respect.

Another Post with a Strong Opinion

SPOILERS. If you have not seen the Glee episode “Shooting Star” and do not want details, please do not read further.



On Thursday, April 11, Glee aired an episode called “Shooting Star.” The Down syndrome community appears to be in an uproar about it because Becky (the character with Down syndrome) played a controversial part in the episode.

Here’s what happens. The episode starts with one of the characters (Brittany) claiming she found a comet hurtling toward Earth and everyone will soon die. Since this is Glee, everyone believes her without confirming this with, say, any news outlet anywhere, and they begin to contemplate the end of the world.

Ok, that right there is all you need to know about Glee. Though they do touch on controversial subjects, the show is ultimately a goofy romp focusing on the emotional bonds of high schoolers (and now college freshmen). I mean, come on: the premise of this entire episode is they believe the world is ending and act accordingly based on the scientific “discovery” of one of their classmates (who names the “comet” after her cat – enough said).

Moving on. We’re treated to some musical numbers in which the students express their feelings of friendship and love to each other through song. Then we learn that the comet isn’t a comet after all, but a bug stuck to a Pringles can Brittany has mistaken for a telescope. (Again, why are we taking this show so seriously?) Becky has a conversation with Brittany (the two have been friends throughout the series) expressing that now that the world isn’t really ending she is scared about the future because all of her friends are moving on to college and she “can’t.” Brittany tells her everything will be ok and they pinky promise that if Becky prepares for her future, it will seem less scary. Sound advice, that. The scene is great – Brittany treats Becky as an equal and does not patronize her. (Why aren’t we focusing on this fabulous moment between friends?)

Fade in on most of the glee club sitting in the rehearsal room. A shot is fired, then another. Everyone is afraid. The two teachers in the room tell everyone to hide behind the various furniture and to text and tweet what is happening so people on the outside can get help. They shut off the lights and shut the door while a metronome ticks quietly in an otherwise silent room.

The acting in this segment is beyond phenomenal – better than any episode of Glee. Their fear feels real, and as a woman married to a teacher, I can tell you that this is pretty much my biggest fear for my husband. There is a particularly heart wrenching scene in which we see Brittany alone in a bathroom stall, whimpering and trying to balance on the toilet so her feet aren’t seen.

Eventually we learn that it wasn’t a school shooting at all and that no one was hurt. It turns out that Becky, in an attempt to prepare for the future, brings a gun to Coach Sylvester and tells her about her fears. She agrees to give the gun to Sue but accidentally pulls the trigger, firing it, then drops it, causing it to fire again. (Why are we not focusing on that? Talk about an erroneous representation – guns don’t do that.) Sue covers for Becky, gets fired, and life goes on. They do a group number then fade to black.

Just like every other episode in the history of Glee.

I think the Down syndrome community is way too hard on the writers of Glee when we hold them to a standard for Becky’s character that apparently doesn’t exist for other characters. There are many minorities and myriad social issues represented on Glee, so this isn’t a case of needing to protect the one minority on the show. In fact, there are so many that Glee often feels more like a contrived after-school special rather than a show that is serious about tough issues.

People find it horrible that Becky was portrayed as a school shooter. She wasn’t. It is crystal clear that she never intended to hurt anyone. She was portrayed as a scared student who thought a gun might make her feel safe. I shudder to think how many students in our country do that very thing every day. If we want to insist that our kids are “more alike than different,” why is it so hard to believe that in today’s world, she might think a gun is a good choice? The media is full of representations of guns as protection.

And instead of focusing on how Becky did absolutely the right thing and modeled the best possible action in this situation (talking to a trusted adult about her fears and turning the gun over), we are pissed off that she brought the gun at all, regardless of how this probably happens every single day with students of all abilities across the country – and with students who likely never tell an adult they’ve done so.

People find it horrible that Becky did not have any consequences because Sue covered for her. In response to that, here’s just a sampling of things people on Glee have done and have suffered no consequences whatsoever:

  • the “jocks” throw slushies at students walking the hallways (not only are there no apparent consequences, the people who are “slushied” see this as a badge of honor, a sign they are truly a glee member)
  • a student gets “slushied” with a slushie full of rock salt and requires surgery to correct the damage to his eyes; the perpetrator walks free
  • a student attempts to commit suicide; we only see the student one more time after that, totally fine and happy – no portrayal of his healing process
  • a student intentionally destroys another character’s car out of jealousy
  • a student prostitutes himself for tuition money
  • an underage student becomes a stripper to support his family
  • a character abuses another character (his wife); charges are not filed against him
  • a character abandons the Army

The point I’m trying to make here is that I feel we hold Becky’s writers to an impossible standard by expecting her to never make a mistake or do something foolish. And in the comments I’m reading about this episode, that really seems to be the gist of it – I get the overwhelming feeling that we wouldn’t find it acceptable for Becky to make any mistake because it might perpetuate one of the many stereotypes about Down syndrome.

In some ways, Glee is the ultimate exercise in inclusion: all the characters make incredibly stupid, unrealistic choices. All the characters walk away without consequences. Every episode ends with a song. Heck, even the character who is in a major car accident due to texting and driving eventually learns to walk again. Where’s the outrage over that plot line? The plot line that teaches the world that if only people in wheelchairs worked hard enough, they could walk?

Do we take this show seriously because it attempts to cover serious topics? Should we take this show so seriously? This is a show where we confirm a character is a prostitute through a musical number. This is a show in which a pet cat is serenaded.

Obviously, I’m a huge fan of this show and I know that makes my opinion here biased, but I hope you can believe that if the show had done something I thought was harmful to the Down syndrome community I would be all over it. I love this show because I’m musical at heart and any show that brings this kind of talent to prime time and doesn’t involve voting is ok in my book. I also love how, on the whole, there is a character with Down syndrome who breaks stereotypes. (And lest we forget – there have been two other characters with Down syndrome, both written with respect and care.) The show is just goofy, a chance to sit back with wide eyes, shake your head, and wonder what on earth the writers are going to do to top the most recent ridiculous scenario.

Did this episode take some missteps? Sure. It would have been great for Becky to say she’s “choosing” not to go to college rather than she “can’t” go to college – especially since the actress who plays Becky goes to college herself. But even still, this show doesn’t have every character but Becky going to college. Several characters didn’t go, and one who did go struggled and dropped out. And while college is a possibility for some people with developmental disabilities, it isn’t nearly as accessible as it is for typical teens. (At least in 2013 it isn’t – and Becky lives in 2013.) Instead of quibbling over who goes to college and who doesn’t and why, I’d love to see our national conversation (for all students) switch to “college is not the only way to measure success.” Frankly, I’m impressed that the writers are having Becky graduate with her peers – the law says Becky can stay in school until she’s 21, and many teens with developmental disabilities do so. Showing Becky move on with her peers, albeit with clumsy writing, is breaking a stereotype. Showing she has complex emotions – not just happy all the time – is breaking a stereotype.

Was it a bit of a stretch for Becky to be the one who brought the gun? Yes, but not because she has Down syndrome. Up until this episode she was portrayed as sassy and spunky and very much in control of her life so this seems a bit out of character. But then again, isn’t it sometimes true that those of us who are seemingly so confident are sometimes the ones who are truly struggling? The show has touched on this in other characters as well. One of the over-arching themes is characters do really stupid stuff driven by insecurity.

I guess all of that is to say that while I understand the concerns expressed by parents in the Down syndrome community, I think we are reading way too far into it. Lauren Potter herself endorses the episode and has stated she is fine with that happened – since she is an adult with Down syndrome, I value her opinion very much. It’s her life and her character. Portraying her as a victim of the writers isn’t fair to her. We also can’t expect Becky to break every single stereotype or be the perfect ideal of what a teen with Down syndrome “should” be – no one person can do that. Our loved ones with Ds are too unique to do that.

In order to enjoy Glee, I think you really need to just go with the flow. Don’t expect too much of it. If something rings true to you, that’s great. If not, bear in mind the show is written to push the boundaries of absurd. Enjoy the music, enjoy the absurdity. After all, this is a show that just featured Extreme’s “More Than Words” sung as a love ballad to a cat.

Uncomfortable Truths

Three months ago today, a man died. His name is Robert Ethan Saylor (“Ethan”) and he died over a movie ticket.

After watching a movie along with his personal care assistant (PCA), he remained inside the building while his PCA went to get the car. Mr. Saylor went back inside the theater to watch another screening of the movie, but did not buy an additional ticket. Movie theater staff were not able to get him to leave or purchase the additional ticket so they contacted mall security. Three mall security guards responded, all off-duty law enforcement officers moonlighting at the mall, and attempted to get Mr. Saylor to leave the theater.

Witness reports state that Mr. Saylor was “verbally and physically resistant” to the officers, but we do not know much more than that – the why he refused, or the how, or how long they gave him to collect his thoughts and understand the situation. And while witnesses report his resistance, they also report that he was shouting for his “mommy” all along. In response, the officers used three pairs of handcuffs to tie Mr. Saylor’s hands behind his back and placed him in a prone position on the floor. In that position, Mr. Saylor stopped breathing. Witness reports state that bystanders – not the officers – noticed he had stopped breathing and informed the officers. The officers removed the cuffs and performed CPR.

Mr. Saylor died. Tell me, in what world does a reasonable human being (much less three) hear a grown man, with an obvious cognitive disability, call for his mommy and think the appropriate response is to cuff him and put him face first on the ground? We are willing to surround a compound full of weapons for days on end while negotiators try for a peaceful resolution, but one man – unarmed – in a movie theater requires immediate, forceful restraint that results in his death?

The coroner ruled the death a homicide, but did indicate that Mr. Saylor’s health conditions (heart disease and obesity and, strangely, Down syndrome itself) may have contributed to the speed of Mr. Saylor’s asphyxiation. Because this was a fatality at the hands of off-duty law enforcement officers, the case was brought to a Grand Jury who then reviewed the evidence but decided not to bring forward criminal charges against the officers. It was indicated that Mr. Saylor was “compromised” by “his Down syndrome.”

I’ve said it once, I’ll say it a thousand times: Down syndrome in and of itself is not a way to die. It is not a deadly condition.

I am livid. I am heartbroken. I am scared. I am advocating for justice.

What makes this tragedy even more horrific is the response – from those within Down syndrome world and those on the outside. There are people claiming it’s Mr. Saylor’s fault (yes, because it is reasonable to be arrested over a movie ticket; it is reasonable to be cuffed and die over a movie ticket). There are people claiming that his mother “never should have let him leave the house.” There are people claiming these officers were completely right in their reaction – despite the fact that between the three they have 49 years of law enforcement experience that should have taught them, explicitly, that there was no need for escalation in this scenario. There are people who want us to hush up and move on, and people who think that more training for law enforcement is the answer. Tell me: what would training teach you that 49 years of experience can’t?

A man died over a movie ticket. Literally a movie ticket. A man died while calling for his mom. Over a movie ticket.

Frankly, none of these reactions surprise me at all and this resistance, this avoidance is absolutely what I expected – it’s exactly what happens whenever anyone with a disability has the audacity to demand being treated like a human being. This tragedy has uncovered again, brought into the stark light of day, some very uncomfortable truths about what it means to have a disability in this country. And instead of seeing that for what it is, and working toward change, there is a lot of hate out there, and anger, that some of us have the audacity to point out these truths. And beyond that, there is a sad amount of avoidance and hoping we can sweep this back under the rug.

Uncomfortable Truth 1:

The world is not always a pleasant place for people with disabilities. This is an entire segment of the population that continues to be marginalized, ignored, denied access, patronized, put away, put down. There is a deep ugliness in the heart of some people when it comes to disability. I’ve been asked why I didn’t “take care of it” (meaning Down syndrome, meaning my living, breathing, beautiful child) when I was pregnant. It is not uncommon for people with disabilities to hear “I would kill myself if I were you” or “I’d rather die than use a wheelchair.”

We hide behind our charities, our non-profits, our laws. We say that our fellow human beings are taken care of, they are loved, and included. But the harsh truth is they aren’t always, and we prove it every single day. It’s the blocks and blocks you have to go to find a curb cut. It’s having to fight to get your kid an education when the law says it should just be given to you. It’s the employer that refuses to hire someone with a disability, even though they are as qualified for the job as anyone else. It’s the continuous slashing of benefits, health coverage, and supports. It’s people thinking they have the right to tell you that you should have had an abortion, that your kid shouldn’t even be alive.

And in Mr. Saylor’s case? It manifested itself in a really horrible, irrevocable way. It’s the bystanders who refused to speak up and call for cooler heads. It’s the officers who determined that the appropriate, measured response to lack-of-movie-ticket was three sets of cuffs and down to the ground. It’s the Grand Jury who decided that despite a homicide, despite the absolute negligent behavior of three law enforcement officers, there should be absolutely zero punishment whatsoever in this case. Just another disabled guy out of this world, no longer a burden to society.

Uncomfortable Truth 2:

These prejudices exist within the disability community. I have been moved to tears by some of the things I’ve read by my fellow Down syndrome moms. People wondering out loud if maybe Ethan shouldn’t have been in the movie theater at all. People wondering out loud if maybe he hadn’t had enough “compliance training.” All the “my kid would never do that” I’ve seen, and the “I’ll never let my kid out of my sight.” We preach about independence and going to college and real work for real pay, but when we find out about a mom who sent her son to what should be one of the safest places on earth – a movie theater – we condemn her. We gather our chicks back into our nests and turn our backs on her.

Yeah, we all have our own personal beliefs about disability. We are all the people we were before receiving the diagnosis. But a little unity wouldn’t hurt here, and a little support for Ethan’s mom, the choice she made to let her child into the world, and the belief that Mr. Saylor was in fact capable of leaving the house…well, that would go a long way. How can we expect the world to welcome our children if we ourselves are so quick to judge? There should be a single message coming from the Down syndrome community: Ethan Saylor had the right to see a movie in a public place. And he had a right not to die.

Instead? Discord. Or with some, worse than discord – silence. Crickets. Our prejudices are showing. Time to deal with them.

Uncomfortable Truth 3:

Sometimes law enforcement officers do not do the right thing. Period. Full stop. And the really uncomfortable truth? There is a long history of law enforcement officers causing harm, and causing death in situations that never should have resulted in such extreme measures.

I am appalled at the readiness to believe that these three officers were 100%, absolutely, without doubt in the right – and Mr. Saylor is completely to blame for this. A man who was likely scared, confused, did not like to be touched – a man who expects law enforcement to be wearing uniforms and carrying badges – a man whose only crime was failing to buy a second movie ticket died because of the poor choices of law enforcement. There’s really no way around that. If the officers had chosen to back off, to de-escalate the situation, to take ten seconds and think “huh, all he did was not buy a ticket? Let’s wait for his caregiver to arrive to buy a ticket” would Mr. Saylor be dead today? Probably not.

It’s a horrible truth that sometimes the very people we trust to protect us do the worst thing imaginable: kill someone. And the companion truth is sometimes those in law enforcement deserve consequences for the poor choices they’ve made, just like us civilians.

Uncomfortable Truth 4:

The fix to this isn’t going to be quick or easy. There is no “feel good” solution to this. There is a lot of push right now for “additional training” as the answer. The uncomfortable truth here is the training isn’t going to change much – especially if the training is just about people with Down syndrome. Down syndrome didn’t kill Mr. Saylor – three off-duty police officers who were over zealous and didn’t take the time to stop and think did. In fact, these officers likely already had training in the two things that might have saved Mr. Saylor: de-escalation and proper restraint procedures. Their decades of combined experience should have given them at least a few opportunities to work with people with disabilities. Training does not fix the deeply rooted societal belief that Mr. Saylor never should have been at the movie theater to begin with.

There is no way to pat each other on the back, sing kumbayah, and move on. It hurts to say that, it’s hard to admit, but it’s the truth. A man is dead. No way to tie that up in a pretty bow and call it a day. And frankly (and I’m looking at you, NDSS) – it’s an insult to Mr.  Saylor’s life to think that we can.

What’s needed here is justice. The officers need to be held accountable. And then the Down syndrome community needs to hold society accountable. Challenge these ugly ideas, create a world where our children can go to the movies.

Then we can sing kumbayah.


So. What can you do? Join us in our push for justice for Ethan.

There is a petition for the Maryland Attorney General to open an independent investigation.

We are also using the power of Twitter to contact those with a bit of clout and rally them to our cause.

Please check out what I wrote up. With a Little Moxie is hosting the information. One-page fact sheet. Twitter 101. List of Twitter handles to call out in your Tweets.

Rowenna Update

Just a quick photo post in between all the school stuff and the post I’ll be putting up on Friday about the tragic death of Robert Ethan Saylor. Lest you think my life is all doom and gloom and thinking deep thoughts about disability issues, here’s what Rowenna has been up to her while her mom has been IEPing, advocating, and blogging about the big ideas instead of blogging about the reason behind it all – our sweet girl. Consider this a promise for more Ro pics in the coming weeks.

Spring has finally decided to arrive. Of course in Wisconsin, spring means 40 degrees. But hey, I’ll take it. Spring brings with it spring cleaning:

Window Washer Blog

It also means fun new wellies to wear now that the snow has melted and the world is wet, muddy, and oh-so-fun to stomp around in:

Boots Blog

We cleaned up her little car and took it for a spin:

First Drive of Spring BlogWent to the farm to visit hubby’s family:

Ro and Grandpa Blog

Went on an Easter egg hunt:

Easter Egg Hunt Blog

And celebrated Easter:

Easter Blog

My life is full, rich with these wonderful little moments with my daughter. It’s these moments that fuel my desire to create a more accessible, just world for my daughter, for my friends, and for the families coming up behind us.

But I forget that you, the readers, aren’t privy to these little bits of sunshine, and without them this blog loses a bit of its luster. It starts to sound a bit like angry special needs mom being angry, rather than proud and joyful special needs mom wanting a better world for her child.

We are doing ok, this family of mine. With spring comes the promise of warmth and sunshine and green things growing. We have an oven again. We have two reliable vehicles. We’ve been working out. I’ve been knitting and reading and advocating, all things that I absolutely love.

And Rowenna? Well, Rowenna is Rowenna. Happy, thriving, curious and clever. Going through a fun stage of being very interested in how things work. Watching mechanical items very carefully, figuring out ways to open and close new things, watching us go about our daily chores and always trying to join in. She’s growing – nearly in 4T clothes now – and able to access just about everything in the house by moving a chair or stool over and climbing right up.

Thanks for sticking with me as I explore the things that go through my mind and question the “supposed to’s” I so often come across in Rowenna’s world.

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!