Be very afraid (31 for 21)


That’s how it feels to be told “No.”

In not quite these words, my city’s recreation department said: No, we don’t want your child’s kind. We don’t want to do what it takes to include him in our program. He is not allowed here.

As a mom, it hurts to have one child be welcomed to play in an afterschool recreation program while one’s younger child – the one with a publicly feared diagnosis – is turned away.

As an advocate, it’s frustrating to watch a bureaucracy focus on its own legal protection instead of its mission of serving the public.

As a human, it’s tragic that the fight to include people with disabilities in society is still so necessary, and it falls on the shoulders of ordinary folks needing extraordinary superpowers to make change happen.

Part of me just wants to walk away, but I can’t.

There is injustice whenever a person, because of his harmless differences, is excluded. And when that person is a gentle, fun-loving, cooperative six-year-old, it’s just absurd.

People are scared of this kid.

Raphael adorable pose with pumpkins I’m a plan-ahead kind of person so I contacted my city’s recreation department well over a year ago to inquire about having my two school-age boys in its afterschool program so I could go back to work. Writing and editing jobs have been spotty lately because I don’t go after new business. Freelancing adds too many scheduling hiccups into my life. I’d like to find more consistent and reliable work like the part-time job I had when Raphael was a toddler, which I had to leave to provide the care he needed then. Unfortunately, that led my family to fall into debt. I simply need to climb out and earn a better income.

But with a kid who has disabilities, finding enriching childcare so one can work is anything but simple.

I’m beyond lucky to have a wonderful caregiver who is willing to watch my son and help him thrive, but I wanted him to be in a program with plenty of typical peers so he can socialize and be more physically and cognitively challenged instead.

So every so often, I followed up with recreation personnel to alert them that Raphael would need some simple modifications to support him in the next year’s afterschool program and to offer my help in arranging it.

I suppose I could have just signed him up for the afterschool program without any advance notice. It ends up I might as well have because the city did nothing to prepare. The program leader waited until school was about to start to talk about my son’s needs and what it needed to do: things like assign someone to be close by while he eats and climbs on the playground structure, make sure he goes to the bathroom, and be available if he needs help buttoning his pants.

I went out of my way to make Raphael’s participation work by providing a list of my son’s individual needs and strengths as well as care strategies that work well. I provided an ideal candidate ready to start (and willing to volunteer her time, too!) as Raphael’s direct care assistant. I provided job descriptions and salary standards for such a position, staff training and grant opportunities, information on what other recreation departments were doing to support differently abled people, as well as loads of resources about how to be inclusive. Later, I even offered to pay directly for my child to have an aide with him.

The folks responsible for the city-run afterschool program refused to discuss the information I gave them and only allowed us to pay tuition to have Raphael attend for a three-week trial as long as I went along with him and was 100 percent responsible for him.

Newsflash: Having Mommy care for her child while everyone else is led by recreation instructors is NOT inclusion.

I went along with the trial-period plan in hopes of showing the staff that it wouldn’t take much for the program to successfully include its first kid with Down syndrome. I shared several ideas.

For example, I suggested that the program instructors stop ignoring my kid because they figured Mom was handling him and instead address him directly and treat him like he belongs. I explained how it was inappropriate to make all the children stay in line when walking into the building with the exception that they could pass by my son as if he weren’t there. I demonstrated how if Raphael got a head start walking to the gymnasium for an activity, everyone could get there at the same time to hear the rules of the game together.

Everyone in the chain of management repeatedly made it clear that they didn’t want most of my advice.

Meanwhile, some interesting things happened during the trial period. I watched how children in the program took Raphael’s hand to show him the way, invited him to sit with them for snack, and modified their play to include him because kids are great at being natural peer supporters when adults don’t interfere. The young, barely above-minimum-wage-earning women who instructed the kids even started to include Raphael more.

In his short three weeks there, Raphael added a lot of benefit to the program. He has that tendency to help people be better at being people.

Rapha hugging a big pumpkin

This kid even hugs pumpkins.

Since the trial period ended, Raphael gets sad when we go to pick up his brother from the program because he doesn’t get to join in the fun.

Inclusion is about making a conscientious choice to know and mediate the different needs of different people without excluding those who don’t fit a predestined plan. Being inclusive is about making little tweaks and accommodations as they are needed. It’s not that different from providing typical childcare. Being inclusive doesn’t have to be a big deal.

But the powers-that-be in the recreation department dragged their feet for months and then, instead of figuring out how to be inclusive with the resources they already have, spent their time figuring out how to deny my son access to the program without breaking ADA law and without looking like total asshats. The city took a few weeks to review its supposed “results” of the trial period and then officially told us Raphael was unwelcome because of his different needs.

For the past few months, I’ve heard plenty of lip service from the city’s recreation employees about how inclusion of people with disabilities is their goal, how they, too, have kids with special needs, and how nice it would be for the city’s recreation department to include Raphael followed by a variety of “buts.” The excuses boil down to this: Inclusion is just not a strong enough priority.

Ironically, the day we were finally informed that our son could not come back to the program, the city council spent most of its evening meeting spewing self-congratulations about how inclusive it was. Blech!

This isn’t over. If not for my son, for the sake of my community, I aim to make change happen so all people can participate in public activities without discrimination.

I have put countless hours into this already.

Really, I am just beginning.

Not quite 31 for 21. In honor of Down syndrome awareness month, I am posting to this blog nowhere near every day for 31 days to increase awareness of Trisomy 21, the most common genetic condition that causes the syndrome.  #DSAM2015

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Brotherly love (31 for 21)

The expansive love a new mother feels cannot be described.

Perhaps only one who has given birth can get what it’s like to have such tremendous affection for another being. Motherhood increases the capacity of one’s heart so deeply, so fully, so immediately.

Within hours of bringing my beautiful boy home from the hospital, I knew I wanted another baby.

By the time my firstborn was a talkative toddler – in perpetual motion and constant curiosity – I was pregnant with my second son.

brothers huggingI remembered a friend telling me she had had her second child as a gift for her young daughter. I could relate. I have three siblings who, aside from my own children, are the most important people in my world. I can’t imagine what my childhood would have been like or who I’d be today without my sisters’ influence.

I wanted Elijah to have a sibling. I wanted him to have a childhood playmate and later, a  confidante, and later still, someone to share life’s important moments with. I especially wanted him to have a brother or sister to go through the experience of having aging parents with – I suppose because that’s where I am in life and am I’m glad I don’t have to go it alone.

Shortly after Raphael joined our family, I felt I had betrayed his brother.

Raphael would not be quite the brother-in-arms I had envisioned. He had serious medical problems. He has physical and intellectual disabilities.

I don’t suspect he’ll be driving a car or partying on a college campus with Elijah some day. And even if he does, it’s not the brotherhood I had expected.

Nevertheless, the bond my two boys have is a thing of wonder.

smiling brothers

Sure they wrestle as brothers do, and sometimes I think the only game they know is “fight.” But they love each other so purely, it’s inspiring and heart soothing.

Eli and Rapha sharing a moment while eating ice creamRaphael follows Elijah from room to room and cries when his brother doesn’t want to play. When Raphael went down a playground slide on his own the other day, Elijah ran over with pride and excitement to tell me about the momentous development. When Raphael refuses to listen to his mama and falls to the ground in a boneless heap, Elijah will coax him along and lead him to the car.

Even though it’s not Elijah’s job to hang with his brother in a group, he just does it sometimes. When the school bell rang at the end of Raphael’s first day of kindergarten, Elijah walked from his second grade classroom to his little brother’s room to lead him to the bus. No one told my then-7-year-old to do that.

I think growing up with a sibling who has some differences compared to most people is a blessing for Elijah. Perhaps he’ll be a compassionate man and caring husband someday simply because he has grown up naturally internalizing the ideas that differences don’t matter, but being there for another does.

When Eli hears about the mistreatment of someone with a disability, or any human injustice for that matter, he takes it hard and wants to fix the situation. He gets pissed off when Raphael gets excluded.

I’m also aware that having a sibling with disabilities can create distinct concerns for a more typical child. Artism signThat’s why I enrolled Elijah in Artism, a free art therapy class for siblings of children with autism, Down syndrome or other disability. Elijah isn’t particularly into art, so I wasn’t sure whether he really wanted to spend Sunday afternoons with the art kids and miss his beloved Broncos on TV, but so far, he’s into it.

As I write this, Elijah is painting a shed with a bunch of kids who have something in common that most of his school friends just don’t get. Kids filling in the mural with paintWhile making art, the kids can talk about what it’s like to have a brother or sister who has endless therapy appointments, or who can’t talk well, or who doesn’t follow the rules of the games like others his or her age.

Or not. It’s not really therapy at all. No one leads the kids to talk about anything in particular.

But it is something that Elijah gets to do that his brother isn’t allowed to participate in, on purpose. It is just for Eli.

When his brother was younger, Eli used to cry that he wanted to go to Children’s Hospital, our virtual home away from home for Raphael. Raphael got so much attention in those early sick years, and Eli, like all siblings, especially first-born ones, wanted more for himself. When your parent is in constant triage mode from one crisis to the next, seemingly less needy kids can feel left behind no matter how much attention they demand and actually receive.

Elijah knows that we’ll never leave him in the shadows.

Eli smiling while painting“I am a pretty lucky boy,” he said to me a couple days ago for no apparent reason. “I have a mom who is there for me and who doesn’t yell at me like other kids’ parents. I get to do lots of fun stuff. I am free. And I get to have a brother with Down syndrome!”

Thanks to Eli, Raphael will get the attention he needs, too.



Artism kids mugging in front of their almost completed shed mural

Not quite 31 for 21. In honor of Down syndrome awareness month, I’d like to post to this blog every day for 31 days to increase awareness of Trisomy 21, the most common genetic condition that causes the syndrome.  #DSAM2015

Posted in Advocacy, Down syndrome, Family time, Motherhood, Parenting Special Needs | Tagged , , , | 1 Comment

Kids are kids (31 for 21)

Check out this two-minute video. It says it all.
More Alike than Different

Video published on Mar 19, 2015. Created and Produced by Lauren and Paul Costabile.

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October is… (31 for 21)

October is a new beginning.

September sucks. Not completely, but September can be truly anxiety producing. School has begun, way too many activities start, and for many of us, there are the important Jewish holidays, which if you do them right and work hard at making amends, they take up a ridiculous amount of time and brain space.

Imagine you had to deal with Christmas during September. Seriously, I think  everything would come to a halt; we wouldn’t be engine revving all over the place.

I think that’s why autumn lovers let out a collective sigh of relief and Facebook gets filled with vibrant pictures of colorful foliage on the first day of October. People like the first day of the month because it’s a metaphoric fresh start.

The TV news showed footage of snow blowers spewing frozen white flakes in Colorado ski country last night. Pay attention. The air is changing.

The way people with Down syndrome are regarded in the world is changing, too, for the better. We’ve come a long way and have far to go, but please pay attention to people like this kid this month. October is Down Syndrome Awareness Month.


This boy has changed my life.

He has Down syndrome (DS for short).

Learn something about people who have DS. Your world will be better for it.

I promise.

I know.

Image result for down syndrome awareness month

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Don’t limit me

My son is in kindergarten. He loves his school, and so do I. But I am already seeing how his school wants to keep expectations low for him due to his diagnosis, presumably so the educators don’t have to put as much effort in to accommodate his special needs and help him succeed in life.

Boy in a box

Don’t box me in.

It’s not the teachers’ or administrators’ fault. They are handcuffed by federal regulations, local policy and tight resources. Yet they should be adhering to the spirit behind why the IDEA (Individuals with Disabilities Education Act of 2004, Part B ) was created, which legally guarantees my son a “free, appropriate public education.” All children should be given equal opportunity.

Rapha holding sign: baseball player

When I grow up…

About a week ago, Raphael’s special education teacher basically let it slip that she doesn’t expect him to reach grade level in academics and that his disability means that he won’t be offered to learn the same things as other kids.

In the school hallway after a parent-teacher conference, she said, “I don’t know if he will ever be at grade level. When he is 18 to 21, he can learn vocational skills through the school district.”

At first, I was caught off guard by the comment. I told my husband on the way home that I felt “unsettled.” Eventually, I felt furious.

How is my child ever going to be at grade level with an attitude like that? How can someone, who should be his primary supporter at school, predetermine his future when he is only 5 years old? What kind of vocation is she talking about? (Not everyone can be a grocery bagger, right?) Who knows what he’ll be able to do?

kids and para in school hallway

With a buddy and a para at school

Certainly, not much if we don’t expect it or aim for it.

At his IEP (Individualized Education Plan) meeting last spring, the plan stated that Raphael would be taking an alternate state assessment in third grade and beyond as opposed to the standard assessment nearly all children in American public schools take. When I asked how teachers would know whether he would need the alternative at that point (after all, he was still in Pull-ups and pre-K at the time), the school representative said, “Oh, don’t worry. You can change which test he’ll take at your next IEP meeting in three years, which will be before third grade.”

But, by setting my son up for the alternate test now, I believe the school only has to teach him to that “alternate,” i.e., lower, standard.

With sudden hindsight, I now wish I had pushed harder to make the IEP team change that statement about alternate assessment. But I had already pushed for so many other things in his education plan by that point – I had held up the IEP process through several meetings and letter writing campaigns to ensure higher goals and enough supports for my kid – that the alternate-standards topic wasn’t on my radar. And third grade seemed so far away. I chose to trust the system and wrap up the IEP already.

There are always so many competing interests (raising kids, running a home, working – and the excessive extras required of being a special needs mom) that sometimes I just have to shift priorities and pick my battles.

But Raphael needs his educators to expect big things from him; like I do. He can’t achieve if he doesn’t try. He can’t achieve without those supporting him being his true champions. He can’t reach his potential if he isn’t even given the chance to learn the same things other kids learn and be tested to the same standards as his peers.

Now my concern is becoming even more concerning.

The ESEA (Elementary and Secondary Education Act, also known as “No Child Left Behind“) certainly needs updating, and it is currently being reauthorized through Congress.

The “Student Success Act” the latest iteration of ESEA reauthorization, which modifies existing law to give states more control over education, reduces federal oversight and removes some of the flawed school accountability measures, passed  a U.S. House committee two weeks ago with opposition from most Democrats. Some amendments have since been made, and another vote is expected this week.

The “Student Success Act” may be fine for many typical kids, but the National Down Syndrome Society opposes it because, among other things, it does NOT:

  • Guarantee that kids who take special, instead of standard, tests are not automatically taken off the diploma track. Just because a kid needs certain curriculum modifications and takes the alternate assessment on alternate academic achievement standards (AA-AAS) shouldn’t mean he can’t learn enough of the general curriculum to earn a high school diploma.
  • Ensure desegregation. Students could be removed from general education classes just because they take the alternate assessment. Apparently, that’s the way things still work in some states. Taking away special ed students’ opportunity to learn along with their peers hurts all learners and is the definition of limiting people.
  • Limit the number of students who take the AA-AAS that can be counted to determine school performance measures. National intellectual disability (ID) stakeholders and researchers say that currently, too many students with ID take the alternate test. The 1 percent cap on how many proficient and advanced scores from the AA-AAS that can be calculated into achievement targets needs to be maintained. If I’m understanding this right, when kids, who could do better, are taught less and still achieve high results on the less rigorous assessment, their test results make school districts look like they are doing their job, when really they are just teaching more kids to achieve to a lower standard.
  • Ensure students have access to highly qualified teachers. Abundant research shows that learners with high needs are most likely taught by the least qualified teachers. I know my son gets substitute teachers with minimal training regularly. In our case, they are lovely people, and he manages in spite of them, but just putting a warm body in the classroom to sub for his regular paraprofessional is not quite the competent teaching my son is supposed to get by law.

Various national educators’ groups and others also oppose the “Student Success Act” for reasons beyond its effects on kids with disabilities. Those who oppose the act say it will limit education for at-risk and economically disadvantaged youth.

A separate reauthorization bill was introduced by Senator Lamar Alexander (R-TN) who chairs the Health, Education, Labor and Pensions Committee: the “Every Child Ready for College or Career Act of 2015.” Sounds great, right?

It apparently takes away a parent’s right to have a say in what her child will be tested on and which curriculum her child will be taught. I already have to advocate a ton for my son’s schooling, even though we’re in a school district that rocks. No way would I want educators to exclude me from decision-making on my son’s behalf.

Rocky Mountain Down Syndrome Association’s recent email blast to subscribers urges citizens to speak up right away. It says that research reveals that only 1 percent of students – those with the most severe disabilities, which the National Down Syndrome Congress (NDSC) says corresponds to 10 percent of students with disabilities – should take the alternate assessment.

Meanwhile, most students with Down syndrome actually take alternate assessments at some point in their education. Heck, my kid’s school is already planning that for him when he reaches third grade.

friends hugging on playground

On the playground, with hugs from friends

I doubt my son would fall under the most-severely-disabled category. He is already starting to read, write and do math, not quite like his peers but in some ways to a larger extent than his older, neurotypical brother could do at the same age. Raphael has many friends and is a true asset to his class.

He and people like him, who can’t always speak up for themselves, need others to stand up and be their voice.

R and his preschool para

My teachers love me

That’s why I wrote the letter, below, last Friday to our senators from Colorado, the Honorables Cory Gardner and Michael Bennett. Feel free to copy and paste from this post and write or call both your senators now because this is important (and it’s actually easy to do).

Since I sent my letter, I’ve learned that U.S. Senator Bob Casey (D-PA) announced legislation called the “Empowering Parents & Students Through Information Act,” which would ensure that parents can partner with educators and have a say about what their kids with disabilities get to learn. Senator Chris Murphy (D-CT) also introduced a related ESEA bill that NDSC says contains “critically important alternate assessment language.”

me and R at state capitol

Being activists at the state capital a few years ago

If you care about equal opportunity in education, and you are willing to speak up, these are the important points to make (I didn’t have all this info when I wrote my letter):

  • Please tell your members of congress that inclusion in the general education curriculum and the chance to earn a diploma are essential for students who take an alternate assessment.
  • MOST IMPORTANT: Request that the law requires states to ensure that parents be well informed and able to make decisions for their child about which assessment to take and that students who take alternate assessments can be included in learning the grade-level curriculum and are eligible to try to earn a regular high school diploma (as provided in the combined Casey and Murphy bills.)
  • Explain that federal accountability is essential to ensure states and districts use federal funding to keep education expectations high and improve student outcomes.
  • Ask your senators to encourage Chairman Alexander to work on a new bill because his draft bill had provisions that would harm students with disabilities.
  • Tell them that any ESEA bill must add a 1 percent cap to the number of students who can take a state’s alternate assessment and be counted toward school goals because alternate testing is not appropriate for most students.

baloon over schoolyardUse this link to reach your senators. Or call the Capitol Switchboard at (202) 224-3121 and request your senators’ office.

No one knows what my child’s intellectual achievements will be or whether he will even be able to keep up with his peers, but I do know that if he isn’t given the chance, he most certainly will not.

Here is my letter from last week…

Subject: Opposing ESEA Reauthorization Bill because it limits students with disabilities

I am a mother of two children who attend public school (K-5) in Colorado. They are learning well, and we are proud of them and their school, but my youngest who has Down syndrome is already not held to high enough standards overall, and the district’s and Department of Education’s expectations for him are likely to prevent him from achieving a high school diploma or being prepared for post-secondary education or an entry-level job.

I have high expectations for my child, and educators should have the same high expectations. Teaching him and others with disabilities using weaker standards limits his future. Having parental decision-making power about what is taught and whether alternative assessments should be used is critical to his success.

As you know, Senator Lamar Alexander (R-TN), Chairman of the Health, Education, Labor and Pensions (HELP) Committee, recently released a draft bill to reauthorize the Elementary and Secondary Education Act (ESEA), called the “Every Child Ready for College or Career Act of 2015.” Senators Alexander and Murray (D-W), ranking minority member, are negotiating changes to the bill but many do not understand the impact these changes would have on students with disabilities.

Senator Alexander’s draft bill severely weakens key measures in current law that support students with disabilities to be able to achieve to their greatest potential and, in turn, to contribute their utmost to society.

Three parts of the bill threaten quality education and the future of students with disabilities:

  1. Allowing any student with disabilities to be diverted from achieving a high school diploma;
  2. Teaching any child with disabilities according to weaker standards, therefore making him or her not ready for post-secondary education and entry level jobs;
  3. Removing the decision-making from parents about what is taught and assessed for all students with disabilities.

To keep protections in place for children and youth with disabilities and to keep expectations high and their future opportunities open, please know that:

  • I have great expectations for my child, and public schools should have those same high expectations.
  • I believe students with disabilities should have equal opportunity to earn a high school diploma.
  • Having the ability to decide, as a parent, whether to remove my child from the general curriculum or standard testing is imperative.
  • Any revision to ESEA that allows for unlimited numbers of students to be assessed using an alternate assessment can be detrimental to student advancement. Research tells us that less than 1 percent of students with the most significant cognitive disabilities need alternate assessments. Therefore, no more than 1 percent of students should be tested with an alternate assessment so that as many students as possible can earn a high school diploma, a chance at further education, and the opportunity to work.

Please oppose Sen. Alexander’s version of the reauthorization of ESEA and make sure any reauthorization of ESEA includes all students with disabilities in the assessment and accountability systems using the same standards and assessments with accommodations.

Students with disabilities can achieve, they can work, they can contribute to society, and they can go to college and other education programs after high school. Don’t limit them by having low expectations and setting a too-limiting track for their future when they are still little.

Please limit the ability of schools to lower expectations for my child by limiting the use of lower standards and alternate assessments. The only people who should be able to make the decision to lower expectations for a child should be his or her parents. Senator Alexander’s draft bill puts the future of children with disabilities at risk.

with Governor Hickenlooper

Meeting Gov. Hickenlooper before his re-election.

 A note to readers:

I don’t consider myself uber political, but I am always concerned about the public, from the standpoint of you and me, that is, ordinary people in the community, not the powers that be. I suppose I am getting more involved by researching and writing this post because it’s personal: I have kids in public school. (I paid little attention to education policy before I had offspring.)

Let me know your thoughts in the comments. I’m learning. I’m interested.

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The Words We Use

“He has a disability,” my nephew blurted to my neighbor when we stopped at the corner by her house to say, “Hi.”

He was trying to explain why my boy, Raphael, sat in the buggy trailing my bike, while he and my older son were sporting two-wheelers around the block.

My nephew’s words startled me.

Just before his announcement, I had been proudly pointing out the adorableness of this kid to my neighbor, Peggy, and I suppose offering a subtle comparison of my own between Raphael and his much larger cousin by stating that the boys were both 5 years old.

My nephew’s accurate words conveyed a similar notion but were far more direct, as only a kid can be.

I began to wonder about the words people use to distinguish disability – to describe Down syndrome.

I wondered about the impetus for using a disability label instead of a more precise, but lengthy explanation.

I wondered why we feel compelled to explain differences at all.

"biking" with pedal extenders and parent push bar

“Biking” with pedal extenders, seat belt, and parent push bar

Certainly Raphael having Down syndrome doesn’t relegate him to the bike trailer, but the low muscle tone, short legs, and delayed development that can come with the syndrome are the reason he doesn’t yet ride a bike on his own. Sometimes I feel bewildered by the need to explain why he is the way he is, and summing up all the ways he differs from typical peers into a label, such as Down syndrome, doesn’t give quite enough information.

Recently, our family took a friend’s two children with us to a sensory-friendly screening of the film A Dolphin’s Tale 2. The Autism Society partners with AMC theaters to make it acceptable for kids to move around and make noise without experiencing sensory overload at the movies each month. The lights are up, the sound is down, and kids can act like the talkative, active little people they are.

A teenager in the theater was making a lot of strange noises, and Bryn, 7, asked why. It was as innocent a question as the previous one she’d asked about why the lights never went down.

I told her that the boy was probably having some feelings he needed to express. I told her it’s okay to make noises at that movie and we could just sit there and let him make sounds.

with friends at the movies

With friends at the movies

My response was simple. (Perhaps an even more meaningful teachable moment escaped me.) I had succinctly described what was up with the boy so that Bryn would know that he was a kid just like her. I wanted her to know how to respond to his seemingly out-of-place antics. In this case, that meant to simply not stare at the loud boy, to just let him emote, and to enjoy the film.

My 7-year-old, answered Bryn differently. Elijah said, “It’s okay, he just has special needs.”

I chimed in, “Right, like Raphael has some special needs, too.”

“Oh, right,” Bryn replied. “Like, Raphael wears glasses.”

“Yes,” I agreed.

And that was that. Out of the mouth of babes…

Kids just want satisfying answers to their questions. Too often, grown-ups answer entirely different questions than the ones kids mean to ask. That’s why I sometimes find it best to answer a question with a question or to first muse aloud in mutual wonder.

There was no need to label the boy’s disability in that moment at the movies. There was no need to describe the myriad ways that autism spectrum disorder or Down syndrome affect a person.

Wearing glasses does make Raphael different from the majority of his peers. Just as the movie-theater kid’s uttering of strange sounds makes him different. Bryn’s having a faint angel kiss on her forehead (a beauty mark given during childbirth) makes her different.

Some distinctions can be classified as special needs. All distinctions are simply individualisms. None of them need to convey any measure of worth about an individual.

I’m not saying, “Don’t distinguish between people or differentiate.” The ability to discern is a fundamental we teach children early on, as in spotting certain symbols as numbers and others as letters. Kids need to categorize colors and shapes before they can learn how to add and subtract, and ultimately, to become independent. We, all, constantly compare and contrast and define.

What matters is that one’s self-identity, and the words one uses to compare, do not hinge on downgrading the value of another human being.

Kathy Snow quoteThe catch-all “special needs” is an imprecise description, and not my favorite, but it’s not wrong.

For the sake of appearing fair, Raphael’s kindergarten teacher likes to emphasize that all her students have something special about them. It’s a nice thought. Harmless, really.

But if everyone is special, then no one is, which is precisely my point. I wish the world could see that having Down syndrome is as special and as ordinary as every other trait a person could have.

Since it’s October, which is Down Syndrome Awareness Month, I urge you to really get to know someone who has Down syndrome, if you don’t already. You’ll understand that we are all more alike than different.  Next, I ask you to think about your attitudes, beliefs, and the words you use about people who are different from you and look for personal bias.

Mark Twain QuoteThe words we use to describe and label are hugely important because their underlying meanings and nuances give them hidden power, but the reasons why we choose certain words perhaps matters more.

Earlier this week, a community group in Ft. Collins, Colo., discussed the importance of considering the negative context of the word “illegal” because the restaurant chain Illegal Pete’s (which by the way, makes such giant burritos that I order a kid’s size) is about to open in town. Because illegal immigration and discrimination against people of Mexican heritage are hot topics in this region, labeling someone “illegal” can be an insult – or even a threat.

According to The Coloradoan newspaper, “’Social context is hugely important,’ Fort Collins immigration attorney and meeting moderator Kim Medina said. ‘We’ll never get to big issues, such as immigration reform, until we can solve these smaller issues of language.’”

I liken the lawyer’s statement to how we, in our society, talk about people with disabilities. We’ll never get to fully accepting and including people with disabilities until we look at the words we use to describe them.

My son wasn’t a “Down syndrome baby” and isn’t a “Down syndrome kid.” He is Raphael.


Although those descriptors are not technically wrong, and having Down syndrome is an inextricable component of who Raphael is, an inelegant word choice, such as “He’s Down’s,” quietly reinforces seeing him solely for his disability rather than as a complete person. His condition shouldn’t define him or diminish the value he contributes to society as a fellow human being. Down syndrome is just something he has. What he is, who he is, is far more interesting. The term “Down syndrome” needn’t be used as an adjective.

Posted with permission of the copyright holder. angreco, M. F. (2007). Absurdities and realities of special education: The complete digital set [searchable CD]. Thousand Oaks, CA: Corwin.

Posted with permission of the copyright holder. Giangreco, M. F. (2007). Absurdities and realities of special education: The complete digital set [searchable CD]. Thousand Oaks, CA: Corwin.

Society’s lexicon has replaced “fireman” for “firefighter” and “stewardess” for “flight attendant” because the latter terms are more accurate and inclusive. People-first language proponents would rather we say “John uses a wheelchair” than “the handicapped man” or “John is wheelchair bound.” That’s because words impart attitudes and reveal social conscience. And vice versa: Attitudes shape language.

Both attitudes and language drive our actions. Both can evolve.

Pledging not to use the word “retarded” may seem like propaganda for political correctness, but understood in the social context that people who have Down syndrome are routinely dismissed, devalued, denounced, denigrated – and even killed – it makes sense to sprinkle compassion and sensitivity into one’s speech.

George Orwell QuoteSocial change starts by self-monitoring our own thoughts and speech so that we aren’t inadvertently stigmatizing others as inferior, stupid, unacceptable, or worse, which is indeed how people with disabilities are still frequently regarded nowadays.

When my nephew said, “He has a disability,” to distinguish something about his cousin, he didn’t mean anything untoward.

It’s true; Raphael has a disability. There’s nothing wrong with describing him that way if you happen to be talking about Down syndrome or something related to his condition.

But what my nephew or I could have said instead was “He is bigger, and Raphael is smaller” or “He can ride a bike, and Raphael rides in a trailer.” Or perhaps, nothing at all.

Choosing our words carefully means we are working to reduce the social justification for prejudice and inappropriate discrimination.

So please, don’t reduce another person to being nothing but a diagnosis.

When people talk about a person who happens to have an extra chromosome like my boy, they often say, “So-and-so is Down syndrome.” Or they feel compelled to point out that “He has a disability” as if it wholly encompasses who he is, and perhaps inadvertently, rejects his capacity and capability.

Raphael, my son, isn’t Down syndrome. He is so much more.

Raphael laughing with his dad

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Normal chaos

Rapha hugging a giant Teddy bear

Not too sick to hug the bear at the pediatrician’s office

So this is what it’s like when it’s not like this all the time…

That’s what I pondered before falling asleep the night before last. Raphael had been well more than not for long stretches over the past year, so when he got sick this time, it no longer fit our newer new normal.

While Facebook friends complain that it’s too snowy or too unseasonably warm or too whatever, I’ve been marveling about what life’s like as we’ve made it through another respiratory illness season without middle-of-the-night visits to Children’s Hospital. It’s amazing how do-able and emotionally unruffled – yet still overwhelming – motherhood can be without repetitive episodes of suctioning mucous, congestion-breaking back pounding, tripping over oxygen tubing, and stumbling around on long-term sleep deprivation.

I’m appreciative every day.

Raphael has shot up two sizes since his last surgery a year and a half ago, gets around without tripping (much) and even climbs stairs. He is learning and developing at what seems lightning speed compared to his arduous beginning.

I wonder when I read about adults with Down syndrome who function at a 4-year-old level how that could be. My 4-and-a-half-year-old’s growth has such velocity that I can’t imagine it will suddenly halt as if he took up permanent residence in Neverland.

I pinch myself to remember that his typically developing peers are making gains at a much more upward trajectory than my boy, but it’s hard to see disability when I’m so focused on progress – and on promise.

One day after I picked up Raphael from preschool, he announced from the backseat, “Raphael thinking.”

No matter that he talks about himself in the third person, that many syllables in a single utterance is a wild success for a kid like him. (At a symposium on speech delays in the Down syndrome population, I learned that expectations for a 15-year-old might be the use of four-to-five word sentences. Already my child pops out statements of that length at least once a week.)

I glanced in my rearview mirror at him and asked, “What are you thinking about?”

“Life,” he replied matter-of-factly.

“Oh, what about your life, Raphael?” I inquired.

“Opportunities,” he said.

My heart swelled. Big word: “opportunities.” Big concept.

Yes, that is my dream for my children: that they will have many opportunities in life.

But sometimes, after a week like the past one, old fears entrenched deep in my nerve cells like hidden trauma stores open for business.

Raphael woke up vomiting last Wednesday at 3 a.m. His old pattern of secretions running down his throat causing coughing, gagging, puking, crying, more puking and so on returned. I kept him home from school and pushed sips of fluid into him all day without worrying about what was to come.

It used to be that his every childhood sniffle turned brutal – longer, stronger, and more worrisome than my other kid’s bouts with a runny nose or a rumbly tummy. But Raphael has been the healthy one lately. Over winter break, both boys got the flu, but Raphael bounced back in a few days while Elijah, surprisingly, was miserable for the entire holiday period.

For the next four nights, beginning a week ago, I put Raphael down in my room so I could listen closely to him breath (not my favorite pastime). He cried and gagged until I held him upright in a chair so he could get some rest. I got little.

As all parents know, when one is up most of the night with a sick child, it messes with one’s brain during the day. Everything that needs to get done gets compressed into not enough time. There’s extra laundry and extra effort to get some calories into the sick child. Work piles up. Things get missed. Rescheduling begins.

Saturday afternoon, I escaped to a yoga class (my sanity savior) during Raphael’s nap. I challenged myself to repeat a tricky arm balance one too many times (I suppose to unfittingly prove my strength). I toppled forward out of the pose and onto my head – hard. The fall wrenched my neck and bruised my knee, but it did more than that to my heart.

Right there on my yoga matt, I suddenly time traveled to Raphael’s first couple of years when my only one-hour break most weeks was yoga class, where I’d sit still and breath, and the simple quieting of my overloaded mind would be enough for cloistered feelings to show themselves. Emotions would overwhelm me as streams of hot, quiet tears became permanently embedded into my matt.

Adding a sick kid to the stress of living a life with too much to do, too little money, and too many other family challenges is enough to rock anyone’s world, but if the trauma of relentless days gone by lays dormant, I now know that it can be jolted awake by a bump on the head. So once again tears began to soak my matt, and I felt anxiety trying to erupt.

During savasana, which literally means “corpse pose,” when everyone lies silently supine and tries to empty her head at the end of class for a few minutes, my yoga teacher slipped toward me rubbing an overpowering eucalyptus oil briskly into her palms. She crouched behind my head and stroked the back of my aching neck.

Having another person touch me so genuinely opened another gate, and deeper feelings arose as I thought about how long ago I’d felt such a kind touch and how distant my experience of a loving relationship is. Snuggling with my kids is wonderful, and my husband will wash dishes or watch the kids so I can get to yoga, but neither is the intimate adult partnership and connection I long for.

One thought after another about the hard stuff that’s current in my life began to swarm in my head as class ended. While others rolled their matts to go, I sat in lotus position facing the wall and just let myself feel.

I suppose that was my real yoga practice for the day.

As each painful thought arose, I invited it briefly then let it go until I could gather my belongings to leave.

I felt a bit undone but also more alive as the effect of that moment of being present lingered the remainder of the weekend.

When Raphael’s temperature soared to above 103 degrees Sunday night, the fear of pneumonia and that terribly frightening underlying question: “What if?” was right there, ready to nag.

At the pediatrician’s office Monday morning, I discussed strategies and options – antibiotics, oral steroids, chest X-ray – and made a plan, ignoring that my son had dropped nearly 3 percent of his body weight in the past five days. Working with Raphael’s doctors is a team effort. When I get to the place where I am unsure of what to do for him next, the doctor’s trust in me helps me trust myself.

I decided to double dose Raphael on his daily asthma controller, continue the liberal use of his rescue meds, drop mullein oil into his infected ear and give it another day. It was the right choice.

The next day, my little guy was fever free and ate an entire chicken tender, French fries, and an ounce of strawberry gelato with only one major gag. (I know, it’s not health food, but it was the first substantial thing he’d agreed to eat in days.)

Raphael went back to school yesterday, just a week since his illness began.

The quiet swelled around me as I lay alone in bed two nights ago, with Raphael tucked into his own little bed in his own room he shares with his brother. All those long nights listening for disruptions in Raphael’s labored breathing, all those months of both of us catching every bug under the sun, all those times I suctioned his airway while feeling the ache in my own chest were long ago.

Now when a night like that happens in the midst of blessed, ordinary nights, I’m thankful it catches me off guard.

It’s hard to imagine how we lived through it when it was all the time.

Rapha in goggles sitting near pool, funny

Posted in Down syndrome, Joy and Pain, Motherhood, Parenting Special Needs, Reactive airway, Sleep Deprivation, Stress | Tagged , , , , , , , | 6 Comments