Motherhood…Unprepared

Another misconception people have about those with Down Syndrome is that they’re dull. They don’t have a sense of humor and they just sit there with their mouths hanging open and their tongues hanging out. They don’t really *respond* to people - just kind of dopily flop around being completely passive and….well….dull.

I’m here to say that’s a load of crap. Let me show you the responsiveness of a 21 month old with DS. Tell me this is a “dull” child.

Untitled from Christy Sturm on Vimeo.

Isn’t that the cutest thing? Now, let me explain something. You see him doing a lot of licking - his hands and his pacifier strap. Understand why this is - it’s due to sensory issues. Because he has a very high need for sensory input, coupled with being practically blind without his glasses, he uses his mouth a lot to learn about the world and his place in it. If he’s not getting enough stimulation (like skin pressure, spinning, and stuff like that), he tends to lick his hands or his pacifier strap. At the point of this video, we weren’t yet aware of his serious sensory issue problems. But it’s not because he’s DULL or something. It’s because it provides something he needs. People with Down Syndrome tend to have their tongues hanging out sometimes. We see it as “dull” or “slow”. That’s not it at all. It’s because people with DS tend to have smaller mouths and their tongues are too big. Plus, very low muscle tone in the oral area is very typical. Combine those things and unless they’re really concentrating on it, it can simply be difficult to do.

See how it’s all about perception? If you don’t ask the questions in order to understand, you assume the worst. “If he/she wasn’t so dumb, they’d be able to keep their tongues in their mouths - means they’re all stupid.” Wrong. There’s a REASON. Often it can be improved. If not, don’t assume it’s because they’re too dim-witted to know to keep their mouths closed.

Today’s entry is a more all-encompassing one, rather than focusing on Henry. I thought this press release from the National Down Syndrome Society after Sarah Palin’s nomination I think is important for us all to learn how people with Down Syndrome prefer to be referred.

Below are tips for the proper use of language for ‘Down syndrome’. The National Down Syndrome Society and the National Down Syndrome Congress encourages all media to use the below language:

• Down vs. Down’s. NDSS and NDSC use the preferred spelling, Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using “Down syndrome” as well.

• People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”

• Down syndrome is a condition or a syndrome, not a disease.

• People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.

• It is clinically acceptable to say “mental retardation,” but you may want to use the more socially acceptable “cognitive disability” or “cognitive impairment.”

Down Syndrome Myths and Truths

Myth: Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.
Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.


Myth: Most children with Down syndrome are born to older parents.
Truth: Most children with Down syndrome are born to women younger than 35-years-old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely “retarded.”
Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.
Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.
Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.
Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: Adults with Down syndrome are unemployable.
Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
Truth: People with Down syndrome date, socialize, form ongoing relationships and marry.

Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

For more information visit: www.ndss.org or www.ndsccenter.org

I couldn’t find any video on my hard drive from before this time. But I wanted you to see Henry from early on. He was about 11 months old here, having physical therapy with his 1st PT, Amy. As you can see, he didn’t have a whole lot of control. He wasn’t sitting up yet and was still having trouble even lifting his head from a prone position. But, look at him WORK. (And try to ignore Steven milling around me, clamoring for my attention. I forgot how poorly he spoke back then)

Henry at 11 months - September 2004 from Christy Sturm on Vimeo.

See? The one thing I really want you to take from this video is how, even though Henry’s eleven months old, he’s doing the same things that all other children do. Just later. People have this misapprehension that people with Down Syndrome just CAN’T do this, that & the other thing. That’s a fallacy. The only difference is that it often takes them longer. What you’re seeing him do now is stuff neurotypical children do at about 3 months or so. It’s not that he couldn’t do it…he just did it at 11 months.

So I’m participating in this “31 for 21″ blog challenge. Attempting to blog every day for the whole month, focusing primarily (for me) on Down Syndrome. I can’t promise that every day will be DS-themed, but if you read my post yesterday , you know I’m on a mission not only to raise awareness about something that’s near & dear to my heart, but also to introduce you to my Henry. Because once you are familiar with someone who has that little extra something in his or her chromosomal makeup, not only will you never be the same, you’ll realize that words like “retard” and making jokes about “the short bus” are based on ignorance of the unknown, fear of the “different” and simply not knowing of whom you speak. So. ‘Nuff said. Here’s what I want to talk about today.

This is a layout I did about my Henry and our reaction when he was born. He was so little. Very, very little. He still is, actually, compared to other little boys his age. But, unlike many other parents who have a child with Down Syndrome, we had no idea. We had no prenatal testing to screen for it, and because he was born at home, we didn’t even know when he was born. Oh, yeah. This amazing child was born at HOME, with no crazy medical intervention, medical “professionals” creating fear and panic for me & my husband, no whispers and prying eyes as people felt sorry for us for having a “defective” child. He was born, we held him, we weighed him, I nursed him. Any problems didn’t even surface for the first couple of days, so we didn’t miss the time of joy and excitement that comes with a new baby because people around us were saying “I’m sorry” or qualifying their comments because he was “less than”. (Don’t misunderstand. Most women have their babies, DS or not, in the hospital & that’s cool. Especially because many children with DS have severe medical issues that must be addressed quite soon after birth. I would never say that all babies with DS should be born at home. I’m just glad Henry was.)

In fact, he was 2 weeks old before we knew. We were so blessed. We had 2 weeks of “babymooning” before we everything changed. At first? He was just small. He was losing weight and, it turned out, unable to nurse, plus he had slight jaundice, so that’s what everyone was focused on. We had a little baby scale at home and I’d weight him, pump my breastmilk, feed most of it to him via syringe (he couldn’t make the bottle work, really) and then weigh him again. Keeping track of how he gained and how much he ate. We went into the pediatrician’s every 2 days or so. After about 2 weeks, his jaundice had cleared up enough that the doctor was able to really examine him. Here’s what I wrote about that experience in the above layout:

I remember standing alone in that doctor’s office as the doctor was finally able to examine him after the jaundice had cleared up. I watched him turn, lift, pull, move, poke, prod Henry all over & then just out of the blue said, “Has it crossed you mind that Henry has Down Syndrome?” Before it even registered, I said, “That’s funny you should say that because I thought that in passing when I was looking at him one day, but that’s all it was…just passing.”
That’s all I remember. A dull roar started filling my ears & all of my insides started roiling. It slowly, very slowly, started creeping into my consciousness and everything around me started crumbling. I don’t remember anything else that was said, just the voice inside trying to keep the tears at bay because I didn’t want the doctor to think I was a bad mother for being sad about it.
Then I had to go out & tell my mom who was with Steven in the waiting room. The noise she made will never leave me. It was raw & guttural - animal-like. A wounded moan. The weight of this was more than I could comprehend. It would be weeks before I understood. Weeks of testing, reading, researching, doctor’s appointments and crushed dreams. Accepting that the dreams you’ve had for your child will never come true is gut-wrenching. Henry will never be president. Henry won’t be a doctor. Henry may not go to college. Henry may never live on his own. Henry won’t have children. Henry won’t do a lot of things. That’s hard to accept. The fact that he’ll most likely need us to care for him for the rest of his life - that’s hard. But I’m thankful. Thankful that he’s with us. As hard as it’s going to be, I wouldn’t give him back. But it’s going to be a rough road. Your existence has redefined true north for us. I guess it’s our journey to find it again. With you as our compass.

I won’t lie. I won’t minimize. Finding out what was up with Henry was one of the most difficult, defining moments of my life. I was scared. I was panicked. Do you know why? Because I was ignorant. I didn’t know anything. I didn’t know what to expect - all I knew was what my limited, stereotyped experience had shown me. It was rough - especially at first. But, you have to understand that all of that now pales in comparison to who Henry is. You’re going to learn a lot about him over the next month. Because he’s amazing. Much more so than I EVER could have imagined as he grew inside me in 2003.

October is Breast Cancer Awareness month. Unless you live in a cave somewhere up in Nunavet, you know this. Because, every October, absolutely everything is pink. Pink housewares, pink storage bins, pink socks, pink underpants, pink windshield wipers, pink garbage cans - all giving a portion of their proceeds to various breast cancer groups. Which is cool. I’m all for eliminating breast cancer. My mother-in-law had it & beat it.

What you might not know is that October is another awareness month that doesn’t get a whole lot of press. But it’s one that’s near & dear to my heart. It’s Down Syndrome Awareness month. It’s a month devoted to promoting awareness about what Down Syndrome REALLY is. About how amazing people with that little extra chromosome are. About how we’ve spent centuries treating them as if they can’t do anything simply because they do it more slowly & deliberately. Because they look different than neurotypical people. But that they’re showing us “normal” people every day that they can do far, far more than we’ve given them credit for.

It’s difficult, as the mother of a child with DS, to not get frustrated with the way the world views these people. To constantly hear jokes with Down Syndrome as the butt. To hear the word “retard” bandied about as we insult ourselves & one another. I cannot imagine what it must be like to live in this world as a person with DS. Because they aren’t deaf. Or brain dead. Or blind. They know that people stare at them. They hear the jokes. They get hit between the eyes with the insults. They hear the whispering. It must totally hurt. But, in spite of it all, most of the people with DS I know don’t hold hatred or bitterness in their hearts about it. I admire that. Because I? HATE IT.

Let’s educate ourselves about Down Syndrome & what it REALLY means, okay? It doesn’t mean institutionalizing people. It doesn’t mean they’re “retards”. It doesn’t mean they can’t learn or love or do much of what we all do every day. They go to work. They go to school. They play sports. They love music. They have friends. They go on dates. They’re even going to college & getting married. They are JUST LIKE YOU & ME. From what I can see - here’s the only difference. They do what we do - just a little more slowly & deliberately. It’s not that they CAN’T do something - it’s just that it takes them a little longer to learn how to do it. Having seen the strides we’ve taken in just the past couple of decades, I wouldn’t be surprised to see a future when people with DS regularly drive, live on their own, and do a lot more. Of course, I’m speaking in generalizations, but I see it. I believe it.

THIS is a person with Down Syndrome. You know what I’m realizing? People fear what they don’t know. They treat people with DS as if they’re less-than-human because they don’t KNOW them. They’ve never met a person with DS and certainly don’t know someone like my Henry. So that’s my mission. You’re going to KNOW Henry. I’m going to spend this month inundating you with information, silly stories, anecdotes and the rest so that you can no longer say that you don’t know someone with Down Syndrome. And, hopefully, with every person who knows Henry, a little prejudice will ease up. A little love will spread. Like the Grinch, maybe a heart will grow 2 sizes that day.

Have you seen this about the Casting Call for babyGap & GapKids? I know we don’t have a chance, but I thought I’d enter both Henry & Steven. I mean, how cool would it be to have a kid with Down Syndrome featured prominently in their ads? I think that’d be awesome. Plus, Steven has the most amazing eyelashes in the history of eyelashes, so I had to include him, too. Here are the shots I sent them…

What do you think? I know the one of Steven has face paint on, but the photo had to be in the last 3 months and this was the best shot I’ve got of him in that time. His eyes are sparkling and he’s smiling. We’ll see. Probably nothing will come of it.

Go on over there & submit your kid, too!

Poor Henry. He got a little hurt at school today. One of his teachers was taking him off the spinning board and caught him in the nose with a fingernail. She felt AWFUL. He’s fine though. Just looking a little piratical now.

Poor baby.

wordless wednesday

We came home from grocery shopping yesterday evening to see this helmet sitting outside the front door. We figured Uncle Eric had been over and dropped it off for himself and that he’d be back later to add it to his stuff. Tonight, however, Steven wanted to call Uncle Eric, so Dad did. Uncle Eric said he’d dropped that helmet off for STEVEN. Whoa. Talk about a happy boy.

He put this right on and was barely able to contain the overwhelming excitment on his face. He even happily posed for pictures. He walked into his room and said, “I feel special…” kinda quietly to himself.

“I’m going to keep this helmet for all of my life,” he says. “Then, when I die, I’m giving it to MY son.”

Thank you, Uncle Eric. You couldn’t possibly have known how much this would mean.