Chewymom

Annette lost her battle with cancer last night. Please lift up her family in prayer–her husband Tom, and her sons Ryan (who is the reason we met because of the Down syndrome connection) and Kurtis.

Annette, we will so miss your bright spot in our T-21 community. We love you and miss you. Thank you for being who you are and for sharing your family and your journey with us and allowing us to be part of your life.

Heavenly Father, Please be with Annette during these last days–maybe even hours–of her life. Let her be at peace with you and pain-free. Comfort her husband Tom and her children Kurtis and Ryan in a supernatural way during this time. Surround Annette and family with love and grace right now. Thank you for the gift of her friendship that was only made possible by an extra chromosome, and please also comfort our T-21 community as we lose someone we love….

I have a confession to make. I am part of an online community of moms who have kids with Down syndrome. And to be honest, sometimes I am envious. DS17 is one of the oldest kids represented on there. These moms of younger kids often discuss their educational choices, and I wish my son was younger than theirs so I could learn from them.

Over the course of DS17’s life, we have done it all. We have homeschooled him. We have sent him (part time) to a Christian school. We have had him in public school in both a regular and a self-contained classroom. When DS17 was little, he was in a fully contained classroom, meaning he had very little “typical” interaction during the school day. I have often regretted that and wished that I had been more aware, more educated, so I could have pushed to have him in a regular classroom at that stage of his life. In the younger years, the differences and delays are less noticeable, and I think spending the day with high expectations in a regular classroom would have pushed DS17 academically. Socially there was never much concern. DS17 had brothers, he was in a regular Sunday school class at church, and we treated him like our other kids. He was right on par in that regard. But academically, could we have done more??

Eventually we attempted to homeschool DS17 in an attempt to give him time at the Christian school where his brothers attended. It went great at first–we did a ton with life-skills development, and at the age of eight DS17 could do a full load of laundry from start to finish. He became a great helper around the house, and he was learning some academics as well, but not as much as we had hoped. We rejoined the public school system, only this time around we insisted on some time in the regular classroom. It was only a small bit, but he was able to even attend a five-day trip to Dauphin Island with the typical fifth grade class. And he absolutely thrived. We decided to never again force him into complete isolation in a special ed class. In middle school, there was no “special ed” at his school, so he was either fully included in regular classes or at the least in “learning disabled” classes. It was a rough three years in many ways. Hormones raged, and DS17 became frustrated academically. He acted out, and the school administration seemed unsure how to handle him.

Fast forward to today–he spends about half of his day in regular ed classes and half in what is known here as the Developmental Program. It seems to be a good fit. He has time with typical friends and time with kids who are at the same or lower level than him developmentally. Yet sometimes I wonder….I hear about young people with Down sydrome who are in regular ed classes in high school, who receive a regular diploma, and who go on to attend college classes. Could DS17 do that if we had pushed to include him fully in the early years? Would he be a better reader? Would his speech be more intelligible?

When I really sit back and try to imagine DS17’s life in about five years, after he is finished being served by our school system, I relax a little bit. In the grand scheme of how he lives the rest of his life, I suspect that those decisions that seem so major year in and year out, about how to educate him, what classes to choose, how much time to spend in which end of the building, will all kind of mesh together and seem a lot less significant than they do at the present and than they have over the course of his education. Even if he may have been “shortchanged” by not being challenged as much as he could have in the early years, he has lived most of his life in a stimulating environment, and he has developed the main thing that will carry him far in this world–a great personality. Even with our typical kids, in the grand scheme of who they become, does it really make a difference who was their third-grade teacher, or whether they were in math club for extra stimulation? Probably not as much as we’d like to think, as we’re pouring our time and energy into all sorts of extra activities.

So to answer my initial question–Are we making the best educational choices–I don’t know! I second-guess myself all the time. And yet, when I really look at who DS17 is, I don’t know that I would change anything, because all of that meshed together has contributed to who he is today. And strengths and weaknesses and all, he is a great person, and I have no doubt at all that he will have a successful and rewarding life and will hold down whatever kind of job he wants. Well, maybe with the exception of being a rock star or president.

DS17 announced the other day, “I know what I’m going to be when I grow up.” We’re pretty used to his long list. He’ll be very quiet for a while, thinking, and out he’ll come with a question about how to become a police officer. Or whether he can go ahead and join a rock band now so he can be a rock star. Or maybe a Nascar driver.

So, I asked DS17 what he wanted to be (THIS time), and said, “I’m going to be the president!”

Nevermind that you have to run for and be elected president. Which would actually be no problem for him–he has what it takes. He is very people oriented, and he is a typical politician–trying to say things to make everyone happy. Yeah, he could win.

He continued, “When I’m president, I’m going to make two laws: First, everyone has to be a Christian. Second, nobody can get drunk.”

So there you have it. When my budding rock star/veterinarian/police officer/Nascar driver/chef becomes president, watch out if you have a different religious persuasion or if you enjoy drinking that demon liquor.

Today we are celebrating low-key. No big party this year. Which initially offended DS17, I think. But he took it in stride, like he does so many things. Rather than sulk, he started telling people they weren’t coming to his party because he was only inviting famous people. When I laughed out loud at that announcement, he said, “Um, Mom?? I have Ellen’s phone number.” I assume he has put in a call to Ellen DeGeneres, inviting her to join us for the day. Ellen, if you stop by you’ll find a messy house, but plenty of birthday cake!

Although DS17 gives me so much blog-fodder, rather than retype what I’ve already said I will link to several posts that most capture who DS17 is and why we love him so much! And of course, most of my posts this month–October–have been about DS17 in one way or another.

Here is DS17’s birth story.

I wrote this post last year in honor of DS17’s sixteenth birthday.

Sweet insight into DS17’s heart.

Would I change anything about DS17?

One of DS17’s roles at our church.

I hope you enjoy reading some of my musings about DS17. As I have said over and over, for the most part, he is just another welcome member of our family. I know that we are all enriched by having him in our lives and by being loved so well by him.

So today, I wish you, DS17, a happy birthday filled with love, peace, and joy. (And famous people.)

I was asked a question on one of my posts about DS16 and Down syndrome. I have mulled this over, and I am going to attempt to answer it.

How have you handled the reactions you and your son get from people in public?

Honestly, it has been so long since DS16 was little, and I don’t exactly remember how I handled it then. Which is kinda weird. We got all kinds of odd looks between DS16’s inability to crawl and the way he would commando crawl across the beach sand, to the walker he used to get around until he finally mastered walking at age three. I think because I had two busy kids so close in age, I was blissfully ignorant of many of the glances that came my way. I was just trying to survive as a mother!

But I know that can be one of the difficult adjustments as a new parent. In fact, I was asked this question in person recently by someone whose son is less than two. It was a dad who admitted, “We still just aren’t used to the stares, and we never know what to make of it.”

First, I assume positive intent. Sometimes I am sure that is wishful thinking. But hey–our kids are cute! And often the stares I have received end up followed by someone shyly approaching me to say, “I have a nephew…” or “My neighbor…” There’s often a connection and a fondness in the look.

Other times, however, the look is because DS16 is doing something odd. Maybe he has food on his face because his sense of touch is less developed than most people, so he has no idea that the mustard from his hotdog has planted itself on his upper lip. Or maybe he is feeling self-conscious about something (say the mustard on his lip), so he acts silly to try to cover up the embarrassment. And frankly, that happens a fair amount. And when it does, well, it embarrasses me, to be honest.

So let me back up. One of my goals from early on with DS16 was to help him fit in with “normal” society. To keep him from standing out in a crowd. I was appalled at the atrocious glasses that were offered when he was a baby and needed vision correction. They positively screamed “DIFFERENT!” I went out of my way to dress him like a regular kid in whatever clothes were in style, even when we probably should have been spending our money on more responsible things. I worked–HARD–on correcting behaviors that made him stand out. When he tongue thrusted, I pushed his tongue gently back into his mouth to remind him to control it as much as he had the ability. When he began grinding his teeth as a toddler, I would put gentle pressure on his cheeks to loose the “grip” and remind him, “No grind.” When he gnashes his teeth, even today, I remind him, “Stop chomping.” It annoys the heck out of him. But those are things that make people do a double take and notice DS16 for his differences, and I want them to notice DS16 for his strengths and to value him as a person, just as they would with anyone else!

If anything, nowadays the stares or odd looks make me that much more determined to have DS16 seen doing normal activities that people do. Shopping at the mall, cheering at a ball game, going on a youth retreat, holding down a job. People look at him and may think they are seeing someone who is radically different than they are, but in fact the thing I want them to see is how similar he really is!

The funny thing is, we have been in our community for almost six years. People here know DS16. Unless we are out of town, odds are that anywhere we go, someone knows DS16. So if there is any staring, the person looking notices that DS16 is loved and accepted. Because believe me, if an acquaintance sees DS16, they are bound to holler out a greeting! It is a given that you will be greeted with a smile, a handshake, and a hug from DS16–he is always happy to see a familiar face!

And just like in the old days, now that I have five kids, I am usually so darned busy just trying to keep them in line, I don’t notice the looks so much.

The main thing that comforted DH and I in the early hours after we received DS16’s diagnosis of Down syndrome was our Christian faith. We were comforted, knowing that DS16 was no accident, but that he was carefully woven in my womb to be just like he is. It may sound contradictory to say, and I’m not getting into a theological discussion on the origin of evil in this post, but we also took comfort knowing that DS16’s Down syndrome was also a result of the fall, and that someday in heaven he would have a perfect body.

As we read about and learned about our new son, we became aware that he would have limitations. He would almost certainly have mental retardation. He would likely have delayed speech, low muscle tone, and difficulty learning all kinds of things from self-feeding to potty training to riding a bike to his ABCs and math facts. That was clearly not part of the picture of the garden of Eden, and it was not how this earth is intended to work. It was a result of the fall of man.

Heaven held out such hope for us in those early days. Imagine what our precious child would be like with a body that worked perfectly! How freeing for him! How exciting for us!

I have a slightly different view of heaven now. Yes, there are some physical issues on the part of DS16 that will be just GLORIOUS to see working properly. I’d love to see his core weakness taken away so he can run without a lopsided gait and ride on a two-wheeled bicycle! I can’t wait for people to understand his speech without having to glance at me to understand what he said! It will be wonderful to see DS16 look at something–really concentrate–without his glasses and without one eye turning in. All of that is GOOD!

But I think some of US are going to be surprised to find that in heaven, we are changed to be just like DS16. We will be GIVEN the characteristics so often seen in people with an extra chromosome. And frankly, the “perfect” characteristics DS16 displays are a lot more important in God’s economy than the ones you and I display. I truly believe that we will be given the ability to see people for who they are. Our eyes will be clouded over so that we aren’t noticing ugly clothes, gray hair, extra tummy flab, and zits. We will see one another’s HEARTS! We will love others based on who they are completely on the inside.

And when I think of it that way, I think, why do I even worry about the other stuff? The aspects of my external body that I want DS16 to have–my superior eyesight and bike-riding ability. My clear speech, understanding of math facts, and ability to toilet-train before the age of three. In the grand scheme of things, who cares? I would rather be noticing people’s hearts that have been made new than their bodies and clothing. When I am in heaven, worshiping Jesus face-to-face, I pray that I will be made more like my son. What an honor that would be.

To be honest, there isn’t a ton to say about DD5 in all of this. But how could I not post this cute picture of her??? She isn’t quite old enough to totally “get it” that there is anything that different about her oldest brother. Which in itself is a beautiful thing.

A few weekends ago, DD5, DS16 and I headed to Indiana to be with lots of online friends who have children with Down syndrome. DD5 had a few questions about that. I had prepared her that there would be lots of people with Down syndrome, just like her brother, so she asked me about several of the kids individually–whether or not that person had Down syndrome. After meeting a few 6-year-olds who were shorter than her, she asked, “Are all people with Down syndrome short?” (Well, no honey, but you are so tall for your age you are off of the growth charts!) After the first evening with our friends, she snuggled up next to me in the hotel bed and said in a sleepy voice, “I think maybe I have Down syndrome, too.” I think maybe she was feeling a little short on attention and was shocked to be sharing center-stage with anyone!

The main thing about DD5 and how Down syndrome affects her life at this point is that she really doesn’t see the difference. Soon enough she’ll start to wonder why DS16 does not babysit her, why he doesn’t drive a car, why his speech can be harder to understand. But for now, he’s just a really fun brother who puts up with a whole lot of silliness on her part.

DS9 is one of those all-American kids that you just love. He has a freckled face and a cheerful disposition that just makes people happy. His classmates picked up on this when he was in Kindergarten and they voted for him to receive the Citizenship award–for someone who was always kind to others, respectful of teachers, and just a great kid. He is that!

A few years back we turned a closet into a bedroom and let some of our boys have their own room for a change. Although we offered that to DS16 first, he declined. He prefers to share a room with someone. So DS15 and DS12 happily took the extra room and the closet as their two rooms, and DS9, also happily, agreed to room with DS16. They were roommates for about two years, and then we moved.

Now, as much as our whole family loves DS16, he can be a challenging roommate. I would ask, what teenage boy isn’t, what with stinky feet and armpits and farting contests and such. But DS16 has a few annoying habits. He snores, for one. He also puts on his MP3 and howls sings. Loud. And he talks as he is going to sleep. So he’s not the most sought after roommate.

We moved to a new house, and our separated boys have had to recombine rooms. DS9 sweetly asked if he might try a different roommate this time. Well, of course–he’s been with DS16 for two years, so it’s probably time for a change! When DS16 learned that he was getting a new roommate–DS12–he was sad. Not that he doesn’t love DS12, but he really enjoyed sweet DS9 as a roommate. DS9’s response was to say that maybe he really should room with DS16. The kid, at age 9, was willing to set his own desires and agenda aside for the sake of his brother. And this was no minor decision like giving up a Coke on a Sunday. This was a decision that would affect him day in and day out for quite some time.

But that’s the kind of person DS9 is. And yeah, just like with my other guys, some of this is just they way they are. But some comes from living with a brother with an extra chromosome. I even think in this case that DS9 sees DS16 often sacrifice his desires to do something for someone else, and he has learned from that. He also has an understanding of how very important it is to feel like you fit in, and he recognized that DS16 fit in with him as a roommate, and he wanted to honor that. It is a character trait that plays out in his friendships and relationships at school, on the soccer field, and at play with his friends.

Today an online buddy of mine posted about her daughter. She is a junior in high school, and she was just selected as the junior Homecoming Princess. She has Down syndrome and was up against three typical girls, and she won!

As exciting as that is, her story is not as atypical as you might think! If you do a google search for “Down syndrome Homecoming Queen,” you will find story after story about people with Down syndrome being voted into these positions by their typical peers.

Now why is THAT not news that doctors share with their patients when giving the diagnosis of Down syndrome?? And hooray for today’s youth who are educated right alongside their peers with an extra chromosome. They recognize and affirm the value in the life of these young people in a way that much of our society seems to miss.