Chewymom

DS15 came into the world when DS16, the one with Down syndrome, was only 18 months old. Once the newborn stage was past and DS15 began looking more toddler-like, people assumed I had twins. And it was very much like having twins! DS15 walked at 14 months, and DS16 learned a mere 4 months later at the age of three. DS15’s speech soon caught up with and surpassed DS16’s. And so for all of both of their lives that they can remember, DS15 has been like the older brother. Although DS16 is very quick to remind everyone that HE is the oldest in the family!

DS15’s name is Ben, and we chose that partially because it means “protector.” That’s a role we thought he would find himself in throughout his life. And sometimes he does. Because he is only one year behind DS16 in school, he is often my eyes and ears out in the world–reporting embarrassing things DS16 does, inappropriate behaviors that need to be addressed. I pictured that DS15 would likely make friends, and he would introduce those friends to his brother and thus help him get to know people.

If you’ve been reading this blog any length of time, you are probably chuckling. DS15 has plenty of friends, but I’m here to tell you that DS16 needs no help whatsoever getting to know people. In fact, he is so outgoing that he has paved the way for DS15 and his other family members (me included) in many situations.

Not only has having an older brother with Down syndrome opened doors to meeting people for DS15, but it has also helped develop his sensitivity. DS15 loves to tease DS16 in the usual brotherly way, but almost always with a measure of restraint. In fact, when the whole family joins in on the silliness, DS15 is often the one to notice when things are getting out of hand and DS16’s feelings are being hurt and has on more than one occasion stepped in to correct even me for going a little too far.

DS15 has learned to appreciate the humor in many of DS16’s antics. Often times, DS15 will tell me some silly story of something DS16 has done, and he ends it shaking his head and saying, “What would life be like without DS16 as a brother,” in the kind of tone that Christopher Robin shakes his head and says, “Silly Old Bear!”

DS15 has developed a comfort level around people with a disability that I never had. He willingly attends a “special needs night” held at a local church one Friday night each month. This church has lots of helpers present, and people with a family member with special needs can bring that person and his siblings–they serve pizza and have music and games and such, and the parents can have a break for a few hours. It is a huge blessing to the families who often struggle to find help, especially as their children become adults and a “babysitter” would just be inappropriate. DS15, even though he is way past the age of needing to be babysat, still attends willingly, knowing he can help out. He has developed relationships with some of the people with special needs and can relate to them comfortably. DS15 is not embarrassed or appalled if an adult with special needs wants to hug him. He has a maturity around those who are different than himself that I never had at that age, because his world of “normal” includes special needs.

I hear the argument that it isn’t fair to other children in the family to bring a child with special needs into the world–often as a way to justify aborting the baby. I’m here to tell you, I would not change a thing about how having a sibling with Down syndrome has affected DS15, or any of my children. It is all part of the fabric that has been woven together to make each of them who they are, and there is not a thread of ugliness in the picture.

Our huge IRL group:

DD5, DS16, and a cute new friend :-):

DS16 on a watusi:

Feeding a baby camel:

DS16 pushes a tired friend on the Buddy Walk:

A couple of weeks ago, Brig got a big surprise in church. As our pastor was preaching, he called out to Brig and asked him a question. Brig turned bright red and answered, and then he heard our pastor use him as a sermon example. The text our pastor was preaching through was Genesis 30:25-43. Read this transcription of this sermon excerpt and be encouraged!

God in His wisdom writes stories, that though, like Jacob’s aren’t what we plan–aren’t what we expect–often are disappointing and often are hard, turn out better that we would have ever planned it. Turn out better than we would have ever written.

October 27th. There’s something happening on October 27th! Brig, what’s happening on October 27th?

Brig: My birthday

Your birthday! It’s Brig’s birthday on October 27th! Seventeen years old….You know, there’s something about Brig. He’s special. You know, you look at Brig, and he displays the image of God in a way that’s different than the way that you and I will ever demonstrate the image of God.

When you and I meet people, we’re categorizing. Where do they fall socially? Where do they fall economically? Where do they fall popularity-wise? Brig simply meets people. That’s a lot closer to the way God meets people.

When most of us are expecting children, we have something in mind. If we’re expecting a son, we’re thinking a better ball player than Lebron James. As handsome as Ben Affleck. As smart as Albert Einstein, and as great of a leader as Rudi Giuliani. You know, I look around this room, and I see no one that is as good of an athlete as Lebron James. I see nobody that’s as handsome as Ben Affleck. I see no one that’s as smart as Albert Einstein; particularly not rolled up in one package. But who would rewrite the story? Who would rewrite the story? No one! Brig’s story is better than any we would have written! Our children’s’ story is better than any we would’ve written. It’s not what you plan, but God gives you something better.

And you see, it’s that way with all of our disappointments. Right now, some of us are in the midst of hardship we can’t imagine–we never imagined would happen. We’re experiencing difficulties that were never on our radar screen and that seem bigger than we can handle. We wouldn’t write it that way! But you see, God is wiser than us, and He is writing a story of our lives that’s better than any we’d ever write.

DS16, DD5 and I spent the weekend in Indiana with a big group of online friends from a T-21 community. I can’t even begin to describe how awesome it was, but I’m sure it will come through in several of my upcoming blog posts.

I learned some interesting things about DS16 this weekend. He had a great time making the rounds among the adults, particularly the men. He has always been that way. Over and over I would catch a piece of his conversation with an adult and overhear him saying, “Well, you KNOW I’m famous….” Delusions of grandeur.

The other group DS16 gravitated toward were the under 7 crowd. He kept them entertained with his silliness and antics. A specialty for him–being the oldest of five kids, he has had lots of experience entertaining young ‘uns.

DS16 had the opportunity to meet a 19-year-old young man with Down syndrome, and a really cute 14-year-old girl also with Down syndrome. In both instances, they did not communicate with one another.

I have been pondering this lack of communication between these teens with T-21, and I have a theory. DS16 does great with kids his own age in his school because they reciprocate in conversation. If he tells about his weekend, they’ll say, “Oh, that’s cool!” And they might tell their own story or ask a question to keep the conversation going. But that is a conversation skill that is missing for DS16, and maybe for these others as well. He can tell about himself and what he is doing, but that thinking of others and understanding the social skill of asking about their lives is not there.

I asked DS16’s special education teacher about that this morning. Most of the time when DS16 is around other kids with special needs, there is an adult or a typical peer-tutor present as well. So if the conversation stalls out, the typical person is there to pick it up again.

I am really thankful for the opportunity to observe this communication gap this weekend. Because as much as I value DS16’s ability to be a social person (and he is QUITE social) in a normal society, it is also important that he be able to communicate effectively with those with special needs. One day (sadly, very soon), his typical peers will begin to graduate and leave home. DS16, I suspect, will begin to involve himself more and more with other young adults with special needs. One day, I want the option of romance and marriage to be there for him. In order to have a satisfying social life, he needs to know how to relate to and carry a conversation with others who are similar to him developmentally. Like that cute girl he met this weekend!

Your eyes do not deceive you–I skipped Day Ten of Get it Down. I had to spend my day flipping my 300+ flashcards over and over, trying to convince my brain that it is GOOD to know about microbes that clean up wastewater, and fun stuff like that. I’m not sure my brain was convinced, but I attempted to regurgitate it all today on a test paper. We’ll see how that went….

Anyway, this chromosome…it has lead me to visit places I never would have been and to meet people I otherwise would not know. Like the entire city that I live in, for example. Because if DS16 did not have that extra genetic material, he would likely be a self-conscious teen who noticed things like like bad breath and ugly clothes and zits. But he doesn’t. And he has practically no inhibitions, which is usually a good thing, but not always. But in the good sense, he has never met a stranger, and he has never failed to introduce me to every. single. person. we run into. Even if he doesn’t actually know them. So I’ve met a lot of people.

I have also travelled a lot of places. Like Iowa, for example. What would take me to Iowa normally? Really, nothing. I’m sure there are lots of nice people in Iowa, and this is in no way a slam on their fine state, but there’s just nothing that would tend to cause me to head up that way from Alabama. Except for the National Special Olympic games in 2006, that is. DS16’s competitive swimming in the Special Olympics has also taken me to both Auburn and Troy, Alabama.

And speaking of people, I have met some life-long friends online through a Down syndrome forum I participate in. I don’t even know when I first started “hanging out” there–probably ever since Al Gore invented the internet, back in the early 90’s, wasn’t it? There are people I have known for over ten years who are part of this group. And guess what! I’ve met some in real life at NDSC (National Down Syndrome Congress) conventions. And tomorrow I leave for another place I have never been–Indiana–for a gathering with about eight-five other people whose lives have been affected by Down syndrome. That’s right–85. We are all either parents or siblings of someone, or the person himself, with an extra chromosome. And can I just say that I am SO excited to see these people again or meet them for the first time!

If I am able to post from Indiana, I’ll likely be putting up pictures of our crew at the Buddy Walk in Noblesville, IN, on Saturday, so you can see for yourself what an awesome group this is!

Barbara Curtis over at Mommylife lives in a nice, liberal community. A place you would expect to be forward-thinking and progressive in its treatment of all people, regardless of race, economic status, and cognitive ability. But you would be wrong. Prejudice against the mentally challenged is strong in that community. Read her account of the story and see if it doesn’t just infuriate you like it did me.

We wish you the best, Barbara, as you take on this school district that, as I said in my comment to you, is surprisingly less progressive than even my state of Alabama in terms of education!

I have heard that comment from people who want to justify terminating a pregnancy when they learn that the baby they are carrying has an extra chromosome. What about my other children? It isn’t fair to them. It will take time away from them. Someday they will have to care for this child.

Folks, this is simply not true. If you were to weigh the positive impact of having a sibling up against these negatives, the positives would win, hands down. What are some things I see in my children as a result of having a child with Down syndrome?

Well, for starters, my other children know how to be around people with Down syndrome, and other special needs! This is something I have had to learn–still am learning! I did not grow up around people with special needs. Even after I had DS16, and people assumed I would know what to say and how to act, I still did not. DS16 was a baby, a toddler, a child–and I just was unsure. Do I approach someone with special needs? Does that young adult with Down syndrome even know that he has it? What do I do when I meet someone with Down syndrome–do I hug him? Do I shake her hand? Do I assume she can carry on a conversation?

This is still a point of awkwardness for me, and I am learning from my son and his peers every day. This is not awkward for my other children, however. They instinctively know how to relate to people with special needs–how to talk to them, what body language to give.

I will leave it there for now, because I really need to be studying for my Microbiology exam on Thursday. This week, however, I hope to write about each of my other children individually and tell you how having a sibling with Down syndrome has affected and impacted their lives.

Thank you so much Gem, for providing me something to blog about today! I really am wondering how in the heck I’m going to keep this up for 31 days. But here we go–day seven.

Gem asked, “As I’ve read your Downs posts and realized that your first child was the one with Downs, I have wondered how you approached each upcoming birth of the following children. Were you worried that you would end up with another Downs baby or did you just figure that you handled it once and could handle it again?”

When DS16 was born, I was 24 years old. I had no idea ahead of time that he would have Down syndrome, so it all came as quite a shock to me. After the fact, I read the statistics and saw that the odds of me having DS16 were 1 in 2400, or something close to that. I asked around and learned that once you have already had a child with Down syndrome, your odds go up to 1 in 100.

Once you have had a child with special needs, you begin to meet all kinds of other people like yourself–through therapies, in the mall, through advocacy groups, and nowadays, online. As I met more and more people, I did not find a single one who had more than one child with Down syndrome. I figured that it was just crazy that I was the 1 in 2400 that first time–surely I’d be in that 99 in 100 group the next.

When I got pregnant the second time, I did not have testing done. At that time, they still wanted you to get the AFP test, which was not really designed as a test for Down syndrome and tended to not be terribly reliable. We looked carefully at the ultrasound, but that was about it.

Another big thing for me was that Down syndrome, which had been an unknown to me, now had a face. It wasn’t this terrible thing. Sure, there were difficulties. I mean, at the time that I learned I was pregnant with DS15, DS16 was less than a year old. He was nowhere close to walking or talking. But he was thriving and healthy, and he brought joy to our lives just as any baby would. Maybe moreso in some ways, because each milestone he reached was something he had to fight for. Seeing his determination and will to learn was inspiring, even at a young age!

Ultimately though, I think the real answer as to why I wasn’t afraid is grace. Looking from the outside, people often think that they could never handle having a child with special needs. They try to make me out to be a saint or a special person. I’m not. I’m just me. God gave me the grace to handle my child and the peace to go through several more pregnancies, because I was the one who needed that grace at the time. Just as he comes alongside the person who loses a spouse or who learns that he has cancer. The battle can still be hard, but when you ARE that person, God can come beside you and help bear the burden in a supernatural way that does not make sense to those who are not experiencing what you are. So the real reasons I was able to go through more pregnancies without fear are because God showed me that Down syndrome was not some scary thing, and He gave me a supernatural peace that even if He did allow me to have another child with an extra chromosome, He would also give me the grace to handle whatever He sent my way..

The homecoming queen at my kids high school is totally deserving of the honor. I first met A when she was in 6th grade. When she was in 8th grade, DS16 was in 7th grade. He was a new student in a new school district, and the only people he knew were kids from our church. There were quite a few in the 8th grade at the school, but two in particular were quite the popular folks. There was E, who was on the football team, and there was A who was the captain of the cheerleading squad. I had no idea if they would be kind to DS16, or if speaking to him would taint their image.

Day one came, and E and A greeted DS16 cheerfully at school. They introduced him to their friends. They made it cool to be friends with DS16. As a result, students who had never been around a person with special needs became comfortable with DS16. They followed the lead of E and A and treated DS16 with friendliness and kindness.

DS16 has a very outgoing personality, so he was fine from there. He soon got to know pretty much the entire school, and now that he is in high school, he can hardly get through the hall for needing to say hello to every. single. person. Could he have made a great impression on his own? He probably could have. But middle school is a tricky age. And two kids risked their status to make a kid with Down syndrome feel a part of their world, and I have no doubt it made the transition that much smoother for DS16.

A is every bit the beauty on the inside that she is on the outside, and that is why her school has voted her queen. She deserves the honor.