Category Archives: down syndrome

Mom, You are a Hero (well, technically, a Heroine)

#family, children, down syndrome, motherhood

When your child really doesn’t want his fingernails … or toenails … trimmed, and you patiently work with him to get it done.

When your child does his best to declare he is all better so he doesn’t have to see the doctor, and you take him anyway.

When you help hold him down for Dr. Shott to look inside his ears with the microscope, although you’d rather be the one being held down.

When you try to console him afterward, telling him it’s all over now.

When he cheerfully says, “Sure!” after you’ve heard “No” a hundred times.

When he is so proud of himself for brushing his own teeth, and you go ahead and get the spots he missed.

When your child has you close your eyes so he can surprise you with his clean hands by letting you smell them.

When he is sleeping, and when he is awake.

When your child is in pain and doesn’t understand it, and you do your utmost to comfort him.

When he asks loudly for the window lock to be turned on, instead of just leaving the window up himself, and you cooperate.

When he is so delighted about giving or receiving an “appise” (surprise) and you recognize that he has caught your generosity.

When he notices that the picture on the book page matches the cover and shows you, and you marvel at his ability to notice such things.

When you manage the logistics for multiple children and one of them gets sick, and you have to quickly shuffle things around.

When you observe each and every single step he makes toward being more independent.

When your husband travels for work, and believes in your ability to manage your home, even when you feel like you’re too tired to move.

During the times you marvel at the blessing that your child is, and you recognize the gifts that come to us through no action on our own part.

During the times you wonder how things can be so hard, but you wouldn’t trade it.

During the exhausted times when he has been getting sick, or needy, and asking for Something Different than he just asked for, and you stay patient (or sometimes, not).

When his little body snuggles up against yours and you feel his gentle breathing, and you are reminded what a gift he is.

When he gets out the pictures of his big sisters and brothers and talks about them, clearly adoring them, and you are grateful for the gift of family.

When he mispronounces words and it’s too cute to try to correct, and you even pronounce some of his words the same way.

When he pretends to be Santa Claus by making a finger mustache over his mouth, and you act surprised.

I’ve read some blogs where mothers don’t want to be considered heroes. But when I consider the definition that a hero is someone who, in the face of danger and adversity or from a position of weakness, display courage and the will for self-sacrifice for some greater good of all humanity, (definition from DuckDuckGo), it seems to me that it fits.

Life move fast for me. Taking time to write slows me down and reminds me of all that I do, imperfect though it is.

Mom, You are a Hero!

Why I’m not going to the National Down Syndrome Conference

children, down syndrome, Kepler, motherhood, Self-care

(Note: a truncated version of this message was distributed owing to Blogger behavior on certain iDevices. This is the complete post.)

I’ve been seeing Facebook posts from excited people talking about the upcoming convention in July. The early bird deadline is today. But I’ve decided not to go.

(This post would probably be a lot more popular if my reason was owing to disagreeing with the official position of someone who is speaking, or with the vision statement of the NDSC. However, I’m just not much about controversy. I tend to think that both sides are worth listening to in *most* cases. My reasons for writing have to do with my own experience, and my hope here is that my experience will resonate with someone else.)

My file cabinet, inbox, reading list, desktop and a box are full of materials on so many aspects of Down syndrome. How to teach reading, kindergarten readiness, inclusion best practices, oral motor tools, lists of apps, apps, physical considerations, speech and language development. I could probably throw my own convention!

I think the ongoing challenges (opportunities, in the positive thinking parlance) take up a tremendous amount of energy for me. I can see how extroverted moms and dads might really thrive in the convention atmosphere, but I think my brain might just pop if I try to put too much more info in there.

Maybe the biggest challenge (opportunity) for me is to actually use my resources with any consistency. I often say that if Kepler had been our first child, he’d be being raised differently. More lessons, more teams, more play dates, more therapy, more deliberate educational activities at home. But, well, with him being our fifth, and coming along when I was losing energy rather than gaining it, I can occasionally accept my more lackadaisical, laidback parenting and recognize that Kepler is a happy, well-loved, smart kid.

More often than not, though, especially in environments such as a convention, I become aware of how very lackadaisical and laidback I am and always wonder if his speech would be more intelligible if I were doing more; if he might be reading already if I’d followed through on all the reading resources I know of. So events like conventions just seem to drain my energy.

It finally occurred to me recently that it might be a great idea for me to hire a babysitter sometimes. I have had several built-in babysitters, but Kepler adores being the center of someone’s attention, which is what he gets from a hired babysitter. What a relief to discover that I don’t have to do every. last. thing. myself, that babysitters can even put Kepler to bed! That’s a step in the right direction to being able to be a little more free for events such as a convention. (Of COURSE Greg puts him to bed sometimes; he just travels a lot.)

The thing I would enjoy about something like the convention is the possibility of finding a new heart-to-heart friend who understands life with Ds from the inside. Between all the moving we’ve done, Greg’s traveling for work, and homeschooling, many friendships have faded away over time, and have been replaced with e-friends. These days, making new friends IRL seems like a challenge indeed.

But if parenting has taught me anything, it’s that I am resourceful and creative and persistent. Simple next step is to invite a mostly online friend to get together! It’s not like I have to plan a 200-person catered affair to get to know someone!

I’ve already got two people in mind.

Tl;dr: Writer is on information-overload, but social-underload.

How Gary Keller’s The ONE Thing got Kepler to Stay with me in the Parking Lot

behavior change, brainstorming, children, down syndrome, Gary Keller, Kepler, obedience, parenting, The ONE Thing, Without Spanking or Spoiling

Look at that little angel face.  Would you ever suspect he’d run away from his mommy in a store, parking lot, park, anywhere-he-needs-to-stay-close? For Kepler, it seems that “Stay with me” is apparently secret code for “Run, Forrest, Run!! Talk about danger!

Taking him places was becoming a huge problem. I dreaded every trip.

Enter Gary Keller and Jay Papasan. Or at least their book, The ONE Thing, The Surprisingly Simple Truth Behind Extraordinary Results.

Not only did I:
– hear about the book, but I also 
– reserved it at the library, and I
– checked it out and brought it home, and amazingly,
– read it from cover to cover, blanketed it with PINK post-it notes, AND
– put it into practice. 
I’m particularly adept at those first three steps, but actually getting around to reading the book is more challenging, putting it into practice is as rare as a two-headed unicorn.
Keller examined the research on multi-tasking and writes on page 44, “Multi-taking is a lie.” We simply cannot FOCUS on two things at once. Narrowing our focus to ONE thing yields extraordinary results, as he says. Let’s see.
With multiple areas in life that simply must be addressed daily, I have tried to do much multi-tasking. Sometimes it works for things that don’t need strong focus, but one where it doesn’t is parenting. Applying Mr. Keller’s thesis I made a list of the essential areas, and then asked myself this question about each area (see The ONE thing, pg. 106). Here’s parenting:
Q:  What is the ONE thing I can do today in regard to parenting that will make everything else easier or unnecessary?
A:  Read and complete the first three chapters of “Without Spanking or Spoiling,” a parenting book I have had since 1996 and have not yet read!
Q: What did I discover in those first three chapters?
A:  To define the problem specifically and behaviorally. Vague problem definition was “Kepler doesn’t obey.” Specific is “Kepler runs away when I tell him to come to me.”
Q: What else did I discover?
A: To brainstorm solutions. I came up with 10. 
  1. Buy and use a child leash.
  2. Take a 3 ft rope along to show him maximum distance he should be from me.
  3. Create a simple rhyme like “Obey means Stay.”
  4. Appeal to his desire to be helpful.
  5. Find books on the topic to read to him.
  6. Create a social story.
  7. Leave him home at all times.
  8. Carry him everywhere.
  9. Allow him to lead and explore occasionally on errands.
  10. Make a leader badge for him to wear where it’s his turn to lead.
Q: What happened when I took him next to the store?
A: We got out of the car and he proceeded to dash out into the parking lot while I was getting the cart. (I hadn’t made my plan yet!) I grabbed him by the arm and his eyes got wide as we got into the backseat and I gently continued. I looked in his face and said words I guess I never really said before: “Kepler, you MUST stay with me for your safety. There are cars and you could get hit by a car if you run away from mommy. If anything happened to you, I would cry forever.” Of COURSE  I had told him bits and pieces of this but not like this; not sitting in the car giving HIM my full attention, focusing on just this ONE thing. 
My words apparently resonated with his sensitive heart, because when we got out of the car, he specifically stood right by me and looked up at me showing me what he was doing. I ended up allowing him to lead part of the time, gave him huge kudos for the good things he was doing — staying with me, helping me, listening, and I used a previous helpful rhyme: OK means Obey, and added, Obey means Stay. 
You probably know Kepler is the youngest of five kids. The other four didn’t run away. Ever. Why? I don’t know. They probably thought about it, but maybe my face was stiffer and sterner back then. So who needed strategies for this back then? 
tl;dr: Gary Keller’s book The ONE Thing, The Surprisingly Simple Truth Behind Extraordinary Results, has practical applications in parenting and made a huge difference in my experience of taking my child on errands with me.
I’ll probably have to review all of this next time, and the time after, and the time after, but he will eventually understand and apply, and so will I. I just have to remember to focus, really focus, on ONE thing.

Down syndrome and The Guardian

down syndrome

Thanks to Netflix, I can catch television shows that were on years ago, and that I had no time or interest in watching when they were available as first run shows. I recently started watching The Guardian, which aired around 2001-2004. There are a total of 67 episodes in the series and I’ve been just watching them one after the other.

The main character, Nick Fallin, is a corporate lawyer who is court-assigned 1500 hours of community service serving those who need legal services but cannot affordthem, mostly children, owing to a drug conviction. Nick may be the most emotionally repressed character I have ever seen in a tv show or movie. As a matter of fact, I wonder at how he is even able to have a relationship with a woman with as little as he says or admits to feeling.

His girlfriend, Lulu, gets pregnant. I realize this is a television show and there are writers behind the scenes trying to create something that will keep the ratings high, but I really had a deep appreciation for the episode when Lulu discovers the baby she is carrying will be born with Down syndrome. The season 3, episode 14 is entitled, All is Mended.

One of Nick’s clients in this show is a 23year old man who has Down syndrome, and this is Nick’s opportunity to understand a little more about what Down syndrome means. The young man, Mark, is preparing to audition for a Shakespeare play whose director always employs at least one person with disabilities. Mark prepares this portion of a speech from Midsummer Night’s Dream:

“If we shadows have offended
Think but this
And all is mended”

Nick and his girlfriend take Mark to the audition, but Mark gets stage fright. Nick encourages Mark and walks him to the stage where he goes on and recites the lines.

Nick shows more emotion when around Mark than you ever see in any of the other 55 or so episodes i have seen thus far, and I think that maybe even the writers couldn’t have anticipated what it does to a person who is open to loving someone with Down syndrome. I loved the depiction of Down syndrome in this episode, the reality of the struggle that many go through when they receive a pre-natal diagnosis, and how incredibly powerful it is to come face to face with a beautiful someone born with this condition, as opposed to what’s “in the shadows” when a diagnosis is first given.

Certainly, parenting a child with Down syndrome is not easy, but there is something unique and deeply moving about loving someone like our son Kepler. I’m so glad for this reminder, especially today.

Shall we Order McCain/Palin t-shirts?

current events, down syndrome, musings

This was the subject line in an email from my good friend, Holly, which arrived in my inbox this morning.

Perhaps it is not the most politically astute decision to be in favor of someone just because they are a mother of five, like I am, with the youngest one having Down syndrome, like ours does. But I believe it says a lot about Mrs. Palin that she knew her baby had DS and she still chose to give life to her child.

And surely there are others in the US of A who are in favor of a particular candidate because of something as non-political as what I am mentioning here.

I don’t get very involved in political discourse, although I do vote every time I have the chance. I haven’t read the cynical version of why McCain chose Palin, although I’m sure someone out there has cast aspersions on his reasoning. I don’t guess we really get to know everything — all we can do is figure things out the best we can.

I’m even going to get a yard sign. First time ever.

This is What the Tropic Thunder Controversy Reminded Me Of

down syndrome, parenting, personal growth


With the opening of the new movie “Tropic Thunder” I am reminded of my own journey with the word “retarded.” It was part of my vocabulary growing up, as in, “Oh, that was so retarded.” I didn’t think about what I was saying, or maybe I did and it just didn’t matter that much to me. Fast forward to January 2, 2006 when a son with Down syndrome blesses my life with his birth and my understanding and use of that word changes drastically. I don’t use the word “retarded” anymore, although I do use the term “mental retardation” pretty much in a clinical way, not in a judging way. I no longer feel that mental retardation is a terrible thing or something to be feared or looked away from, although there are certainly people who have very difficult lives because of the complications of their condition and for whom I have great compassion.

When we were about six months into the adventure of parenting Kepler, I received and accepted an invitation to visit a weekly women’s group consisting of women from my church. I was deep in a time of learning more about becoming authentic, and learning much about being the parent of a special needs child, and dealing with pumping breast milk around the clock for my little son who couldn’t seem to latch on properly, so it was a very emotional time.

The women’s group was a pretty typical group of ladies who brought both pain and love with them to the meeting. Throughout the evening, I found myself feeling very defensive on behalf of one of the women because I felt like the other women were giving her the message, “Just change your mind and get over this stuff.” At some point, I decided to back off and was nursing some hurt feelings. One of the women I was least comfortable with happened to say the following: “I think dogs are like retarded kids. You can only teach them so much.” Since I was still adjusting to the idea of parenting a “retarded kid” I was aghast, stunned, and overcome with grief. Another woman held me as I cried and no one talked about what had happened. The woman who had made the comment did not know about Kepler. I left the group and never went back and never saw her again. Until . . .

Last week in J.C. Penney (two years after the original event), as I shopped, I caught the eye of a woman pushing a stroller and thought I recognized her. I glanced at her again and sure enough, it was the woman who had made the comment. What I was making up about it was that she recognized me but was ignoring me and I had to choose whether or not to acknowledge her. I knew that I wanted to make peace with this woman, so I asked her her name and reminded her of mine and how I knew her. I told her I was so sorry about what had happened that night and I told her about Kepler and how much of a blessing he is and how early it was in our life with him. She told me she knew she had said something wrong but had no idea what it was. I hugged her and again apologized and told her I was so glad I had run into her after all this time. I think it was the perfect time, actually, because I was definitely ready to stop judging her and mend the broken thing between us. She had tears in her eyes and so did I. I love when we get the opportunity to find healing.

And this kid is just such a major blessing.