Sun-Beams: April 17, 2011

In the coming weeks, I'll be migrating this blog over to a new site with a new name, Bringing the Sunshine. More information will be provided soon about why I'm making this change. In the meantime, you can visit my new site now at http://www.bringingthesunshine.com.

I'm introducing a new feature today that (I hope will) be a regular feature on the blog: Sun-Beams.   Sun-Beams will be a collection of links to stories, articles, photos, or videos I've come across that inspired, informed, or encouraged me, or just caused me to think.   Enjoy.

Utes' coaching aide leaves lasting impression - Kurt Kragthorpe

Would You Welcome a Child With Down Syndrome? - Amy Julia Becker

The Incredible Albert Pujols - 60 Minutes

Set Apart: A Primer for The Typical Folks (Full Text)

After the surprising response to my guest post on Beth's page, I've had a number of people contact me asking if they could link or repost my article. Because of that, I'm reposting the piece in full here. Feel free to link up, share, or quote if you like (I'd appreciate a nod to my blog if you do). The full article can also be found on my new site, Bringing the Sunshine.

Set Apart: A Primer for The Typical Folks

Unless you had the benefit of growing up with a disabled friend or family member, I bet you can relate to this scenario: you spot someone in a wheelchair, using a walker, missing a limb, or (fill in the blank).  You want to be nice, so you try to make sure that you don’t give the impression that you’re staring (which often means you look away), and then you are, of course, mortified when your child points and says “What’s wrong with her?!?”  You turn red from embarrassment, panicking because you don’t know what to do now, then shush your kid and give them an impromptu lesson in politeness that they almost certainly don’t understand because they didn’t think they were being rude – they were just curious.  Can you relate?

Both of my children are “differently-abled.”  My daughter, Sarah Kate, has cerebral palsy.  Although she’s made great progress over the years, she still has a distinctive gait that isn’t “normal”.  My son, Nathan, has Down syndrome.  Although he has yet to miss any developmental milestones, his distinctive facial features announce to the world that he is also different.  We’ve encountered a broad range of reactions from people over the years, but the scenario I described above is pretty common.

So if you’re in that situation, what should you do?

I can’t speak for all parents with special kids, but I always like it when people ask questions.  It gives me a chance to advocate for my child, and educate kids on disabilities.  So if you’re ever around my differently-abled kids (or others), I want you to remember something:  You don’t need to feel awkward.  Feel free to ask questions about my children’s conditions and the progress they’re making.  If you know us, invite us to do things – we’ll let you know if we can’t.  Don’t worry that you have to figure out all the details for us – we know the drill.

And while we’re on the subject, don’t look away when you see someone who is “differently-abled.”  Instead, look us right in the eye and flash us a big smile.  Many people don’t take the time to look at our children and see the person instead of the diagnosis.  And that goes for us moms, too – people try not to look at us, either, which means that we often feel invisible, and are often lonely to boot.

Don't look away.  Smile.  Ask questions.

But that's the easy stuff. Now I want to dig a little deeper.

From my experience, and from talking with other parents of children with special needs, there are a few other things that a lot of people do and say that we aren’t so fond of.  Actually, some of these we hate. Really hate.  I’ve prepared a list for you of the Top 5 things I’d rather not hear.

1.  “God only gives special children to special people.  You must be really special.”

That’s really nice, and I appreciate the sentiment, but… What exactly makes me more special than another parent? I’m kinda lazy. I swear. Often. I avoid my daughter’s school field trips like the plague. Room mom? Never!

Everybody loves a compliment, but the truth is that I’m not special and I’m not amazing. I’m just a mom. If there is anything at all about me that is special, it's because I was given special kids, not the other way around.

2.  “You are so much stronger than me.  I don’t know how you do it.  I couldn’t handle it.”

Again, I realize it's spoken with the best of intentions, but let me let you in on a little secret:  when it comes to your babies, whatever it is, you handle it.  The only other option is to crawl into the fetal position and pretend it’s not happening.  But you can’t live that way, so you will have to eventually get up off the floor and face it, because your babies are counting on you.

3.  “I’m so sorry”, or worse, The Pity Stare

Let me let you in on another secret:  A lot of us special mommas actually feel sorry for parents of typical kids because they miss out on being a part of our community. When your kids achieve things, it’s not really a big deal (after that first kid, anyway).  Everything's a big deal in our house!

Yes, there are times that our life is tough.  Yes, there are times we wish we were like you.  But just because we have this Thing – this highly visible challenge – doesn’t mean that our lives are sad or tragic, and or that our children’s lives are sad or tragic.

The thing is, no one is perfect - we all have flaws. Throughout life, we each choose how much we will reveal our flaws to those around us. People with disabilities have awesome strengths. The main difference is that they can't hide their weaknesses like the rest of us.

4.  Critical statements about our parenting choices (includes dirty looks)

Sadly, there are a lot of less-than-stellar parents in the world.  But before you make a really loud comment while standing in the line for the Pirates of the Caribbean ride about how strollers aren’t allowed, stop to think that maybe that stroller is being used as a wheelchair for a little girl who doesn’t have the stamina to stand in line for 45 minutes to see Jack Sparrow.

Occasionally, we do benefit from our specialness.  But much more often, we are like salmon swimming upstream. Please don’t begrudge us the opportunity to do things that typical families do, and cut us some slack if every once in a blue moon we actually have it a touch easier than you do.

5.  "That’s so retarded!” or “What a retard!”

I'm sure that many people who use the r-word probably don't ever consider how what they are saying affects people with intellectual disabilities, their families, and friends - I get that.  When questioned, people will often say "...but I didn't mean..." and I’m sure that’s true.  The bottom line, though, is that the r-word is never used to describe something or someone in a positive way. Retarded is never a compliment.

If you use the r-word, please stop. If a friend or family member uses the r-word, help them to understand why it's hurtful.

Differently-abled children (and their parents) have dreams, just like you do.  We also need friends and love, just like you do.  We are more like you than we are different.

Don’t let the tiny things that distinguish us, separate us.

This blog has moved! To continue reading, please visit us at BringingtheSunshine.com.

A Few Good Friends

Last April, Sarah Kate decided she wanted to do the Bookin' for Books 1-mile Pun Run to benefit her school library.  She trained by walking around our neighborhood with me, listening to her iPod Shuffle.  The race was held again this past Saturday, and she wanted to do it again.  She didn't train this time, but I was hoping that several months of swimming would be enough to get her through it without too much trouble.

We gathered at the start line with a few of her friends, but I knew that once the race got underway we'd probably be on our own.  When the field took off, Sarah Kate tried, as she always does, to go with it.  This time, however, a girl I'll call CW stayed with her.  CW is one year older than Sarah Kate and her parents are friends of our family.  I was touched that CW had decided, on her own, to walk with Sarah Kate.  After a few minutes, the girl who lives next door to us, who was not far ahead, checked up and she and her mom joined us.

L to R: Neighbor Girl, CW, and Sarah Kate
on the course during the 1-mile Pun Run

The three girls plodded on together.  CW's older brother ran by (it was an out-and-back course) and we all cheered him on.  CW and Neighbor Girl continued on with Sarah Kate until the half-mile turnaround point, then they picked up the pace and headed to the finish.  I was happy that they had stuck with us as long as they did, but knew that we still had a good distance to go.

We continued on our way with Neighbor Girl's mom.  It's been in the 80s here for a couple of weeks and the Gulf Coast humidity is like nothing else.  I was pleased that Sarah Kate didn't seem to be as tired as she had the previous year by this point, in spite of the steam bath we were experiencing.

A few more minutes passed and I noticed a boy about Sarah Kate's age coming toward us.  He came right up to us and told Sarah Kate that he had already finished but wanted to come back to help her.  To be honest, I wasn't even sure who this boy was (Sarah Kate told me later that he is in her class - clearly, I am not very observant, and you know of my aversion to field trips and being room mom).  The fact that an eight year old boy would do that completely amazed me.

Sarah Kate with my Potential Future Son-in-Law

Potential Future Son-in-Law stuck with Sarah Kate all the way to finish line, where CW and Neighbor Girl were also waiting to escort her in.  Her time was 23:35 (last year she did it in 24:57).

When Sarah Kate was a baby, I used to worry that kids would make fun of her when she was older.  Certainly, that has been the case on occasion, but more often than not her specialness has been embraced by her peers.  Before she started school, I would have expected the girls to be the ones who would be most nurturing, but there have been a few boys along the way who've been her protectors, as well - at least one in her class in every grade so far.

It's days like these that remind me not to worry so much about whether or not my children will fit in with their peers.  They don't have to fit in with everyone; they just need a few good friends to support them.  It's a lesson I've learned in my own life as a special needs mom.  I have lots of acquaintances - good people that I know - but only a few close friends, because not everyone can relate to my non-typical life. But that's okay, because I appreciate those friends all the more, and I have faith that my children will, like me, always have a few good friends.

This blog has moved! To continue reading, please visit us at BringingtheSunshine.com.

At a Loss for Words

This morning, I'm speechless.  Yesterday I did a guest post over at Our Typical Life, based on a portion of the speech I gave in Atlanta a few weeks ago.  The response to it was astonishing.  As of this moment, the post has over 70 comments, and a few people also made their way over here to comment or email me directly.  The post was also featured yesterday on Wordpress.com's "Freshly Pressed" page.  The reaction to "Set Apart: A Primer for the Typical Folks" has been overwhelmingly positive.  Some of the commenters are individuals who either have disabilities themselves or are the friend or family member of someone who does.  Also among the commenters were advocates and educators, "typical" moms, and at least one childless individual.  There were also several people who feel "different" - including someone suffering from mental illness and a graduated homeschooler.  Here's a sampling of what people had to say:


Oh, this post. The top 5 things…I hear them practically every day and they annoy me even more every time. I love this post so much. I could have written every word of the list and how you feel about it! So great to know those feelings are shared. - j's momma


I love this quote from you:

“Differently-abled children (and their parents) have dreams, just like you do. We also need friends and love, just like you do. We are more like you than we are different.”

So Profound! Keep up the good work with this blog because it will help others to look at things differently! - Lisa

This post speaks to MOMS, all moms, period. There is no mother who doesn’t want her children to be accepted and loved, for them to thrive and grow. Thank you so much for sharing this, and speaking to the heart of women who love their children  - Tori Nelson

You tell ‘em! You have said everything I often have thought and felt when in the presence of differently abled children and their parents. They are blessed to have you as a mother as much as you are blessed to have them as children. - atticannie

I will completely confess…I needed this post. I am really in tune with connecting and sensitivity to ethnic and racial cultural difference but I don’t have a clue about the culture and community of the disabled. This was excellent in it’s practicality and helping those of us who are willing but clueless. - Marilyn

All I can say is I wish you had been my parent when I was growing up!

As a child the worst was the pity stare, or its counterpoint being ignored. People would often make me feel as if I just wasn’t there because they refused to “see” my disability. I like and have used the term differently-abled for years., I am glad to see it get some press. As a differently-abled mother I thank you for seeing your children this way. Let me tell you the best is when people ask me about my hand or leg( I have CP). Education is the best way to dispell the myth surrounding the differences in people and it starts with children. My daughter(now an adult) never stopped being my advocate to her friends-which was so often touching-so it can work, people can change. Thanks for that. - ancientfoods

This has made an impression on me…and has helped me in realizing how to relate to people who have special needs or have children with special needs. Thankyou - Bonnie Marie

Your children are BEAUTIFUL and thank you for enlightening well-meaning others. I grew up with a seriously disabled and disfigured younger brother [think Elephant Man and you get an idea]. I feel for others when their children ask the obvious, “What’s wrong with him?” but you are so right. A simple, “I don’t know, let’s ask why he has such special differences.” is all it takes. Like you said, just ask. We all want to answer, to inform, and to eliminate the fear. I hope folks listen to you. Bless you all with love and laughter. - Elizabeth Godwin Sayle

Wow. So incredibly well-written. We may all be at fault in some way or other in such situations- especially when explaining to kids. This was really enlightening and very important to hear. Your children are beautiful, G-d bless you guys. Congrats on freshly pressed- This was a wonderful article to share with the world.

We all must promote change- thank you for helping clarify and teaching us the way. - rye katcher

I was floored.  I started this blog as an outlet for me, but I've kept it up (and hope to grow it in the future) in part because I've had a number of people tell me that it taught them something or encouraged them in some way.  I wish I could say that I have a Grand Plan for my blog, but I don't.  I'm working on developing some structure, but I haven't even achieved that yet.  


What I discovered through this post (other than that I probably ought to consider moving from Blogger to Wordpress!) is that I Have Important Things to Say.  So even when I'm at a loss for words, I need to keep talking.


If you'd like to read more of the comments, you can do so over at the post on Beth's page.

This blog has moved! To continue reading, please visit us at BringingtheSunshine.com.

Set Apart: A Primer for The Typical Folks

Today I'm guest-blogging over at Our Typical Life.  Beth and I have struck up an unlikely friendship this year (unlikely because she's a good bit younger than me and lives in Minnesota - BRRRR!!!)  based on our love of photography and children with Down syndrome (not in that order).  Following is a taste of what I'm saying over there:

Unless you had the benefit of growing up with a disabled friend or family member, I bet you can relate to this scenario: you spot someone in a wheelchair, using a walker, missing a limb, or (fill in the blank).  You want to be nice, so you try to make sure that you don’t give the impression that you’re staring (which often means you look away), and then you are, of course, mortified when your child points and says “What’s wrong with her?!?”  You turn red from embarrassment, panicking because you don’t know what to do now, then shush your kid and give them an impromptu lesson in politeness that they almost certainly don’t understand because they didn’t think they were being rude – they were just curious.  Can you relate?

Both of my children are “differently-abled.”  My daughter, Sarah Kate, has cerebral palsy.  Although she’s made great progress over the years, she still has a distinctive gait that isn’t “normal”.  My son, Nathan, has Down syndrome.  Although he has yet to miss any developmental milestones, his distinctive facial features announce to the world that he is also different.  We’ve encountered a broad range of reactions from people over the years, but the scenario I described above is pretty common.

So if you’re in that situation, what should you do?

I can’t speak for all parents with special kids, but I always like it when people ask questions.  It gives me a chance to advocate for my child, and educate kids on disabilities.  So if you’re ever around my differently-abled kids (or others), I want you to remember something:  You don’t need to feel awkward.  Feel free to ask questions about my children’s conditions and the progress they’re making.  If you know us, invite us to do things – we’ll let you know if we can’t.  Don’t worry that you have to figure out all the details for us – we know the drill.

And while we’re on the subject, don’t look away when you see someone who is “differently-abled.”  Instead, look us right in the eye and flash us a big smile.  Many people don’t take the time to look at our children and see the person instead of the diagnosis.  And that goes for us moms, too – people try not to look at us, either, which means that we often feel invisible, and are often lonely to boot.

Don't look away.  Smile.  Ask questions.

But that's the easy stuff. Now I want to dig a little deeper.

From my experience, and from talking with other parents of children with special needs, there are a few other things that a lot of people do and say that we aren’t so fond of.  Actually, some of these we hate. Really hate.  I’ve prepared a list for you of the Top 5 things I’d rather not hear.

To read the rest of my guest blog post, click here.

This blog has moved! To continue reading, please visit us at BringingtheSunshine.com.

3.2.11 - Spread the Word

Please...Spread the Word to End the Word.  It's time to change the conversation.

This blog has moved! To continue reading, please visit us at BringingtheSunshine.com.

Slowpoke-ahontas (CMSA Meet Take 2)

Sunday morning was mercifully easier than Saturday. After Saturday's meet marathon, I felt we deserved the double sleep bonus of the time change and the later warmup time. Mr. Andi stayed home with Nathan so it was just The Girl and Me on the drive over. I was determined that Day Two was going to be more fun (Doggone it!), so I put her hair up in two ponytails (she asked if she could skip the swim cap) and let her ride in the front seat of the car. We sang tunes from "Glee" and she read to me from the Toyota owner's manual (don't ask).

After the warmup, Sarah Kate had just enough time to eat a granola bar and an Airhead (one of the few remaining pieces of her Halloween candy that I haven't eaten) before her coach appeared, rounding up all of the 100 yard medley relay participants. He dubbed her "Slowpoke-ahontas", which I found hilarious because she does tend to meander at times (lest anyone think her coach was mocking her lack of speed in the water). I had no idea if Sarah Kate had the first clue what she was supposed to do in a relay. The plan was to have her swim the backstroke instead of the crawl during her freestyle leg (completely legal but highly unusual), but because it was a relay she would have to jump in instead of starting in the water.

I don't know what it is about swimming, but I always feel like I become a helicopter mom at these meets.  I guess the combination of water, concrete, and Sarah Kate's inherent clumsiness feels like the ideal trifecta to win us a trip to the emergency room.  With just a tiny bit of trepidation, I left my daughter in the capable embrace of the expert cat-herding coaches and made my way to the far side of the pool with my Flip video camera.  It might not be pretty, I reasoned, but I was going to film her first relay, just as I had filmed her first meet way back in June. I'll spare you all the details and let you watch it (it'll be like you're standing right next to me - especially once I start yelling). They are in Lane 4, which is the third swimmer from the left.  Skip ahead to around 1:10 if you just want to watch her leg.



We booked out of the meet as soon as the relay was over so that Sarah Kate could make it to CCD class. Before we left, however, she got encouragement, constructive criticism, and hugs from her coaches. They really do love having her swim with the team, even though she isn't fast, and she learns not only valuable water skills, but life skills, as well. This weekend, I heard her coach in one breath giving her specific, detailed instructions about swimming her best, and in the next breath let her off the pressure hook just a little by telling her that her job is "to look cute."  She gets to be just like every other kid and special at the same time.  Some people would probably say that's setting the bar too low, but I don't agree.  The ultimate goal here is not for her to swim fast, but to just keep swimming.

Later that afternoon, I went out for my long run - 16 miles - and it was one of the toughest I've had in a long time. As I struggled, I thought of my little swimmer and kept on running. Like my little swimmer, I pushed through (it wasn't pretty) and I finished strong.


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The Bottom Line

When you are the parent of a child with special needs (or two children, in my case), you become a member of a secret society. You had no idea you were to be tapped for induction into this group, and you're pretty sure you wouldn't have said "yes" if you'd been asked beforehand if you wanted to join. Nevertheless, you throw your heart and soul into the doctrines of this new fraternity - education, advocacy, and research. You begin to preach the virtues of access to education, the significance of research, and the importance of advocacy. You put hours upon hours of your time into navigating the medical and educational systems in order to achieve the best possible outcome for your child. You do everything in your power to give your child what he or she needs. What you can't make happen, though, is change in another person's heart.

We've been very fortunate over the years to have had near-universal support and acceptance of our children (at least on the surface - if our friends and acquaintances had negative attitudes they've not expressed it within earshot). I'm sure that eventually we will face some ugly circumstances and some even uglier people, but so far we haven't seen any sign of it - not, that is, with regard to Nathan or Sarah Kate specifically. I've blogged before in "The Dangerous Cliche'" about the uglier side of the special needs debate and those individuals who don't value my children. It's tempting to think that those people are "bad", but I try not to think of them that way, because they are people - uninformed, perhaps, but still people.  It's very easy to lump faceless, nameless people into a broad category, but it's much harder to do that with individuals that you know and love.

There was a boy near my age in my church when I was growing up that had an intellectual disability, and as a result of his sweet nature (reinforced by my parents' strong values), I would never have thought it was okay to speak negatively about a person with a disability. Earlier this week in "Dare to Dream", I blogged about the many occurrences this fall of students with Down syndrome being crowned Homecoming queens and kings. These students were recognized by their peers because their peers knew them personally. The school system allowed these students to attend with their more able peers, but the system didn't crown them - their peers did. The students had relationships with these young men and women, and they acted based on those relationships.

Amy Julia Becker provided the following assessment in her blog, "Thin Places", today, which sums up my thoughts in a very real and personal way:

Change happens through public policy, but it starts with relationships. A doctor who knows a child with Down syndrome uses different words to share a diagnosis of Trisomy 21 than a doctor who understands Downs only as a medical problem. A teenager who is friends with a person with Down syndrome thinks twice before using the word "retard" to joke with a friend. 

There are days that my head spins with "what if" and "will he ever" and "how will we" scenarios. I feel that I need to take action - BIG action - to change the world. But on other days I realize that I am already doing little things that, when taken together with the little things done by moms like me all over the world, will move our society forward.

The bottom line: it starts with personal relationships. Love really IS the answer.


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Dare to Dream

Over the past week or so, I've come across several stories of high school students with Down syndrome being crowned Homecoming royalty.  Rachel Cooperstein, of Dublin, CA, was crowned Homecoming Queen (she is also a varsity cheerleader).  Jeffery Meyer and Rachel Wilson of Dacula, GA were crowned king and queen, respectively, at their school's homecoming festivities. Owen Phariss of Lawrence, KS, Mike Winter of Madison Heights, MI, Josh Klein of Solon, IA, Laurelle Hellinga of Longmont, CO, and Betsy Daniel of Chester, SD, have all been bestowed with similar honors this fall at their respective schools.  Two generations ago, these events would not have been possible.

When my parents were growing up, children with Down syndrome (and others with disabilities) weren't usually weren't offered an education.  Until the passage of the Education of All Handicapped Children Act in 1975, many states explicitly excluded children with disabilities (note that this was over a decade AFTER the passage of the Civil Rights Act in 1964).  Although the EAHCA (later renamed the Individuals with Disabilities Education Act, or IDEA) provided for a "free and appropriate education" for children with disabilities, it would be many more years before the ideas of mainstreaming and inclusion took hold.

When Mr. Andi and I were growing up, children with disabilities attended school, but they were typically segregated from their peers.  As a result, many of us rarely interacted or were friends with people who had intellectual disabilities - in fact, Mr. Andi told me on Nathan's second day of life that he had never known anyone with Down syndrome (I was more fortunate - a family at our church had a son close to my age with an intellectual disability, and I have always had a special place in my heart for Floyd Powell, Jr.)  Today, children with disabilities are integrated as much as possible with their peers.  Studies show that inclusion and mainstreaming benefit the children with disabilities, but I would also argue that their peers benefit, as well.  High school students from California to South Dakota to Georgia and many places in between are recognizing the individual worth of their peers with Down syndrome.  Yes, there are probably students at each of these schools who have made disparaging comments about or to the students with Down syndrome (I'm not naive), but they clearly aren't the majority.

Despite the negative attitude that many in our society still have toward individuals with Down syndrome and the shockingly high abortion rate of those diagnosed in utero, I am encouraged by stories like these.  Had Nathan been my uncle instead of my son, he might have been institutionalized.  Had he been my brother instead of my son, he would have been educated but segregated.  Who knows to what heights he may soar now that inclusion is the norm.

I dare to dream.


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The Daily Grind

I promise no whining this time!

Today, as part of the 31 for 21 Blog Challenge, I'm going to promote a product. I haven't received any sort of freebie or been asked to endorse it - in fact, I've never even tried it!  That's not going to stop me from hawking it, however.

A couple of months ago I started following @AspirePrez on Twitter (not surprisingly, @AspirePrez is the president of an organization called Aspire).  Aspire is a not-for-profit organization in the Chicagoland area with the following mission: Aspire provides quality lifetime supports to people with developmental disabilities so they can achieve their individual highest potential where they live, learn, work or play.

I know what you're all thinking: Um, that's great, but a charity isn't a product, and Andi doesn't live anywhere near Chicago. True and true. There's something special about Aspire, though. In 2009, they launched a partnership with Metropolis Coffee Company to create Aspire Coffee Works, a supplier of finely crafted coffees. ACW provides not only an additional income stream for Aspire (100% of profits go to funding Aspire's programs for children and adults with disabilities, including cerebral palsy and Down syndrome), but Aspire Coffee Works also employs individuals with disabilities.  Their tagline is "great coffee doing good."  I love that!  Simple and to the point.

Most of you are now probably thinking:  Um, great, but I don't live near Chicago.  No problem!  You can order online and right now they have free shipping on three or more bags.

Some of you may be thinking:  Sounds great, and I do love coffee, but I try not to buy anything that isn't both Fair Trade and organic certified (if you are thinking this, where exactly do you shop???)  No worries, though!  All of Aspire Coffee Works coffees are both certified organic (OCIA) and Fair Trade certified.

Now the rest of you may be thinking:  It's expensive, then, right?  Not really.  A pound of Starbucks breakfast blend will run you about $12.  A pound of Aspire Roast, ACW's breakfast blend, is $12.95.  I like Starbucks (and capitalism) as much as the next person, but I'd rather thrown in that extra dollar that I know is going to help someone who needs it.

So if you like coffee (or know someone who does), check out Aspire Coffee Works!  And if you're local (or family) and would like to try some, shoot me an email and I can add your order to mine!


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