How my nest is different thanks to DS

nestI read this blog post thanks to a friend sharing it on Facebook, and I had too many ideas to share in a comment, so I’m writing my own post with my takes on the idea. Liane Kupferberg Carter wrote “For Some Moms, the Nest May Never Be Empty.

I wrote last year that my second daughter, who has Down syndrome, turned 18, and it was a different experience than when my oldest daughter did. She’s now 19, and she completed high school this June. That change and others of this year have been more impactful than her just turning 18. This year, she’s in a new class setting that’s at our local community college, but that’s still run by our county school district, as was her high school class. She is still learning life skills, but the class is working even more toward the students being able to move about in society on their own and work as much in ways they are able to and will enjoy. She carries around a small purse with a little money and her state I.D. card. She got a bus pass and her own library card (which I just hadn’t done with her yet myself). She’s talking more about socializing. Or maybe I’m picking up on it more. With her having “graduated” from high school, having her be able to be “out there” in the world in ways that work for her seems more imminent. I’m thinking more about finding ways for her to get out there and socialize with her peers. I’m thinking about the possibilities of her immediate and slightly more distant future, whereas before I was just putting that on the back burner in my mind, “putting a pin in it,” because there’s just so much else for me to think about RIGHT NOW (I mean, having three kids still at home, plus a “grown” daughter and now a grandson — yay!!! — is just a ton of work anyway. A woman can only do so much).

My husband has kind of set in his head that she will just live with us forever, so we will never be empty-nesters, just as Carter wrote. I’ve always had in my head that she certainly could move out to different kinds of settings that she may enjoy more than just staying with her parents, at least off and on. I still think that. She’s pretty social and capable.

At the same time, my nest continues to feel different. My oldest moved out two years ago when she got married, which really changed the dynamics in our home. We have four daughters, and it’s astounding how the dynamics shifted when just the oldest one moved out. For one, I really mourned when that oldest got married. It took me months to come to grips with it. I missed her so much, and having her be married and “belong” to someone else made it different than just going off to college. For another thing, I just didn’t like the way the remaining three interacted, compared with how it was when my oldest was still at home. They still bicker more than when she was here (as one example), and it’s been 2-plus years.

I’m acutely aware of the differences between me and my friends, especially the ones I follow on social media. They have similar age gaps in their families, at least at the beginning (there’s two years between the first two, but then a four-year gap after I had Marissa — I just wasn’t ready for another infant too soon because she still felt like an infant and toddler for a longer time than the first had — and then a five-year gap between the last two because it took three long years to get our adopted girl), and while I see their oldest out and doing various fun “new-adult” things like my first, then I see their second and third children out doing those things, too, and I feel like my situation has stalled. Sure, it’s comparing, and you know what they say about that, but it’s just always there. I see it. I feel it. I feel “other.”

I still have plenty of parenting time in me: I have a sophomore and a fifth-grader. From experience, I know the remaining time at home is going to fly with my sophomore, who really keeps me hopping. Then she’ll fly on out of the nest on to all kinds of great things. She’s an achiever, like I was. And the 10-year-old, well, 8 years still seems like a long time.

So the nest is still full-ish. But I have enough taste of the birds starting to fly out that I can feel those changes. I can feel the things that aren’t changing. I also worry a bit about things I’m not doing, which certainly isn’t different from any parent, no matter their child’s situation. I have just recently watched one episode of “Born This Way,” which follows some young-adult people with Down syndrome, and it stirred up all kinds of feelings of sadness, guilt, wistfulness, worry, etc. I was happy for the ways those young adults are just being “normal” young people. I felt guilt for not doing more to get my daughter “out there” more like that. In a way, I don’t want to have that to compare my situation to, because it’s almost harder emotionally for me to compare with people who are essentially more in my situation than others I know. It sets a standard I don’t know I can meet. I mean, I’m sure it’s meant in part to give me hope for a good life for my daughter, but my brain doesn’t work that way. I compare negatively.

I certainly know I’m not ready to deal more with my daughter’s dating future (which is probably a whole other post on its own). It’s hard enough to deal with certain simpler issues with her when she acts like an 8-year-old in many respects, let alone the complex world of dating.

I guess that’s where I put a pin in a few items still, work on some that I’d pinned earlier, and know that I can do this, one or two topics and needs at a time. And whether she eventually flies out of the nest permanently or occasionally, we’ll be (mostly) ready for it when we amble up to that bridge that needs crossing.


Education system leaves kids behind left and right

I haven’t been a fan of “No Child Left Behind” since it started. It’s clear to me that essentially saying, “We’re going to make education the same for all kids and make them all perform well” isn’t going to work. I have two major gripes, addressing kids on both ends of the spectrum — and I know whereof I speak. I have a child with Down syndrome whose IQ and certain academic abilities are far below normal. Yes, she is a bright, alert and involved girl who’s eager to work and do lots of things, but she will never grasp certain concepts, at least not well enough to pass a test on par with her non-disabled peers. Though I do want to push a little to see where my daughter’s boundaries (and full capacities) lie, that doesn’t mean there aren’t some real limits to what she can do compared with people who don’t have her intellectual disabilities.

On the other end of the spectrum, I have daughters who do not have that genetic limitation, and they are very intelligent and talented. Problem is, though they have been tested and shown to have high capacities (IQ, academic abilities, creativity, what-have-you), there are no active programs to encourage them as they develop those skills. Our school system in this city has what’s called a Gifted and Talented program (GATE), but it’s essentially just a pretty, shiny sticker to put on my girls’ academic folders. It means absolutely nothing because it has no funding and no activities besides maybe a field trip once a year to see colleges or something similar.

I have to chuckle when I think about the contrast here with my experience in the great gifted program I enjoyed in my middle school years. Here’s why: it was in Mississippi, which many basically consider the educational laughing-stock of the country. But despite the truths and/or misconceptions in that assumption, it provided for the gifted students. We spent a good part of one day per week exploring other parts of our brains, creating and thinking differently. It was challenging, interesting, and lots of fun.

My oldest daughter has enjoyed the fun and creative challenge of the Odyssey of the Mind program.
My oldest daughter has enjoyed the fun and creative challenge of the Odyssey of the Mind program.

Now I find it extremely frustrating to have children who have the need to explore, create and “think outside of the box” but have no program that addresses those needs. My oldest has been lucky the past two years to get involved with a program called Odyssey of the Mind — but only because she had a friend who was already involved at another school. She was allowed to participate in the program by special arrangement, because she attends a different high school in the district. Thank goodness that was allowed to happen. This is a really neat opportunity for her to create, stretch herself, think outside the box, and so on. Now I would like to see my younger daughters involved. But I’m thinking the only way that’s going to happen is if I pay for the program and take charge of it myself. (I may very well do that.) It fits very nicely into what I envision as being a perfect GATE program. Why doesn’t our district use it?

So this has been on my mind for years, literally, and for the past few weeks I’ve been thinking about how to improve things a bit just here in my younger girls’ schools (middle school, elementary). But, again, this is a much bigger problem that’s not affecting just my kids; it’s affecting all the high achievers throughout the country. I read a great piece in the Boston Globe on the topic today, and I sat here nodding my head, shaking with frustration. Why can’t we actually tailor education to different kinds of students with differing natural abilities? Why do we have to act as if students all can be equal if we just say it’s so or should be so? (That’s another topic as well….)

Here’s a great excerpt from the article:

In 2002, President George W. Bush signed the No Child Left Behind Act, which penalizes public schools that don’t bring the lowest-performing students up to grade level. The federal Individuals with Disabilities Education Act regulates special education and provides schools with more than $11 billion annually. A provision of federal education law called Title I allocates some $14 billion to schools that have a higher proportion of students from low-income families, to pay for programs designed to keep them from falling behind.

The smartest kid in class, by contrast, is not an expensive problem. A boy or girl who finishes an assignment early can be handed a book and told to read quietly while the teacher works on getting other children caught up. What would clearly be neglect if it happened to a special-needs child tends to look different if the child is gifted: Being left alone might even feel like a reward, an acknowledgment of being a fast learner.

Not surprisingly, programs oriented toward gifted children get barely any federal funding.

Once again, we see a problem that affects kids from varying economic and social backgrounds. There are bright, capable kids from immigrant families, from families that are poor, from families that aren’t well educated. But they could really over-achieve and give back to society in a big way if given extra attention. Problem in our current climate is this: if they were underachieving, they’d get more attention. ISN’T THAT INSANE?

I am lucky to be able to give my daughters lots of enrichment because I’m college educated and well-to-do enough to have the funds to introduce them to museums, good classic films, art, books, etc. I also have time to spend with them. That’s great for my girls. But, as I said in my previous post, it would sure be nice if I didn’t feel I HAD to provide all their enrichment because the schools are shorting them. Given these issues, again, Why can’t education be tailored to kids with different abilities? Why can’t we say, Yes, these kids could use some enrichment and encouragement in their naturally gifted ways? And other kids who have disabilities need special help and concessions, and we need to help them reach their highest potential, but not expect that potential to necessarily be the same as kids who don’t have those intellectual disabilities?

Gah! It’s enough to make a mom and concerned citizen scream.

Words DO matter

For the second time this week, I’ve come across a “campaign” to ban a word. Today, it’s the “Ban Bossy” movement, asking people to stop calling young girls “bossy” when they assert themselves, so we can better encourage girls to be leaders. Earlier this week, it was the campaign to ask people to stop using “the R-word.”

I can heartily get behind not just the idea of cutting the overuse and/or misuse of these words, but with the overall goals of the campaigns themselves. As a woman and the mother of four daughters, I am happy to support encouraging girls in their desires to make a difference in whatever community they’re in, whether it’s a classroom, a school, or a group of some kind. And as the mother of a delightful daughter with Down syndrome, I HEARTILY support the request for people to pledge to stop using the word “retarded.” I have never heard someone use it as a neutral descriptor of someone’s development, which is what it was intended to do: it simply means being slower or stopped in intellectual or emotional development or academic progress. What people always use it to mean is “stupid” or “beneath” or “outrageous.” It’s used as an epithet, as a put-down, a derogatory descriptor. I flinch whenever I hear someone use it in casual conversation.

Some may say that language is constantly evolving and that some of these movements are just about semantics. But words have meaning, whether that meaning is different today than it was one year ago or 50 years ago. They pack a punch. I absolutely adore words. I love their power to express thought and feeling, to communicate what sometimes is difficult to translate from abstract notions in one’s head and heart. Their accurate and precise use can feel like a miracle.

The problem is this: many people do not know their own language sufficiently well to be able to articulate correctly what they want to get across. They get by on a pocketful of vocabulary words when a stuffed backpack would do the job much more effectively. They do not understand that their careless use of that limited pocketful can end up coloring a picture in someone else’s mind that does not match at all the picture that originated in their own. That breakdown in transmission of understanding can create hurt feelings at the very least; it can change actions (not in the intended way); it can change attitudes (not for the better).

Since our language currently has evolved to use the word “retarded” to mean the colloquial “lame!” or “stupid” or “ridiculous,” the cat’s out of the bag now and we can’t force it back in, for the word to go back to meaning just its “neutral,” “unloaded” version. It is now a loaded word and will cause people to cringe. It will continue to insult those who have disabilities and those who care about them. So, yes, it’s time to take that loaded word out of our pocket or backpack and just toss it in the trash.

When it comes to empowering girls, who are growing into future women leaders, capable of contributing a great deal to society, we can stop belittling them with words like “bossy.” We can talk to them using words that express our confidence in their abilities, that don’t compare them negatively with boys, that don’t show some underlying expectation that they are lesser. We can value them as females and acknowledge that there are differences between the sexes but not fall back on easy gender stereotypes. “Bossy” may very well be already a loaded word with too many associations attached that we can no longer un-attach. At the very least, we need to be much more careful of how we employ it and in what situation.

Yes, words matter. They’re the building blocks of how we share our opinions, our feelings, our ideas. We need to choose them wisely and assemble them effectively.

Social “rules” and special kids

There are days I don’t think much about raising a child with a disability, and there are others that it seems overwhelming. I’ve written about a few of each of these kinds of days, I think, but today’s is going to be in the latter camp.

It’s funny: most posts I see online now that address Down syndrome are those “they are very special” or “they have impacted our family and others,”  etc. etc., inspirational kind. And they’re generally lovely and inspirational. At the same time, there are certain realities that come in between all that (just as with all child-rearing: the highlights are worth writing about, the so-crazy-they’re-funny-in-retrospect moments are worth a blog post, but the everyday stuff in between gets glossed over). In my case, as the mother of a 15-year-old daughter with Down syndrome, I have learned that there can be many, many moments of frustration and some embarrassment.

Here’s the thing: people with mental and emotional disabilities have a much more difficult time learning the social niceties. We take for granted that all of us after a pretty young age “get” the “rules” of appropriate behavior in our particular culture. But those who don’t “get” them stand out pretty starkly. Toddlers are excused from these rules, though their parents may smile ruefully. And, yes, people with obvious disabilities are kind of “excused” from the rules as well, or at least those who are mostly kind and observant are fairly understanding and downplay whatever’s said or done. But a toddler learns quickly and grows out of that stage and becomes another person who expects others to follow the rules.

My teen hasn’t grown out of that stage. She’s 15 now and still kisses people when she shouldn’t, pokes their belly buttons or other body parts, and shares all kinds of information that we deem to be private. Since she’s a young woman now, she has been menstruating for about a year or year and a half. That means we had to deal with her grasping the concept that she would bleed on a regular basis and it isn’t something to worry about. It also means we get to deal with her fluctuating hormones and moodiness, which isn’t quite as easy to explain or help her understand. And it means that she will say to anyone that “she has her pad.” Aiiieee! Whereas most teen girls would be mortified for anyone to know that they are having their period, even though chances are a quarter of the females around them are experiencing the same thing, mine is perfectly fine with declaring that information in any mixed company.

Here's the 17-year-old with the 15-year-old.
Here’s the patient older sister with the 15-year-old.

Then there’s the issue of boys and girls interacting. She’s at an age where her peers naturally are fixated on their relationships with the opposite sex. Her older sister and our exchange student, both older than she, are dating and sometimes kissing their boyfriends. All cute and sweet and perfectly innocent. Unfortunately, it’s another new and interesting phenomenon that Marissa has to talk about. She shared in Sunday School the other day to the whole class and the teacher that her sister had kissed her boyfriend. Older sister was there, wasn’t embarrassed about the information being known, but that it was being shared publicly at church. Just not the place or time, as most of the rest of us know per “the rules.”

Another issue: 15-year-old either insinuates herself between sister-and-boyfriend and exchange-student-and-boyfriend when they’re sitting or standing next to each other and possibly holding hands, OR she tries to push the two apart, even smacking the guy around a bit. Gah! I’m just hearing about all this secondhand, mind you; my 17-year-old is the kind and patient soul who is having to experience it firsthand regularly.

The latest: today, the elementary school office called to tell me my 6-year-old told a classmate a couple of days ago that she “has sex after school with her boyfriend.”


I think you can imagine how appalled I was to hear that. First, I don’t think the child has any idea what she’s talking about. Second, we are comfortable with the topic in the right conditions, but this isn’t one of them. I then found out that the youngest said she’d heard it from her sister. That would be the 15-year-old. All I can guess at this point is that she’s heard kids at school talk about the topic in some fashion, because high school students do talk. She somehow then shared that topic with the youngest, and the recipe for an embarrassing and frustrating incident was created.

We’ll be having a chat with the 15-year-old and 6-year-old to talk again about what’s appropriate to say in public. The youngest was told this briefly by the lady at school.

Here’s the problem: the 6-year-old probably won’t talk about that again. But the older one will. With all of the above incidents, we have said OVER AND OVER and OVER … AND OVER … and over… you get the idea… “Don’t say ________ around other people.” Or “don’t touch other people. Hug and kiss your family and maybe hug some people, but DON’T TOUCH THEIR BODY PARTS.” Or “don’t bother Sister and Exchange Student while they’re sitting/standing with their boyfriends.” It’s not that we’ve avoided the topics or just said these things a few times. We must mention them several times a week.

I just don’t know if it’ll ever sink in.

Nope, these are the things we don’t read about in the sweet, inspirational blog posts or the news stories about a girl with Down syndrome being crowned prom queen or the boy with Down’s being allowed to make a touchdown in the football game. Those moments are ones their parents will cherish forever, I am sure. But the thousand, million, other moments of real life are likely much like the ones I’ve just chronicled.

Parenting is tough. It’s rewarding. And parenting a child with a disability is even tougher and sometimes even more rewarding. I think I’ve mentioned before that it’s getting more interesting and challenging the older my daughter gets. I guess we’ll see just how much more so, but I’m hoping the teen years will be the trickiest. We’ll just have to wait and see.


They say that when you have a child with a disability, you must grieve the loss of the “normal” child you expected to have. I did this for a few days when I first found out through amniocentesis that my unborn baby would have Down syndrome. After that, I was as eager as any mother to give birth to a new baby. And her birth day was lovely and exciting and “normal.”

As I’ve adjusted expectations over the years and figured out at different stages what she has needed to aid her in developing and growing and achieving her potential, I’ve mostly rolled with the punches. But even as she walked and talked much later than my older daughter and did lots of things her very own way and at her own speed, I was mostly unconcerned. And she was so CUTE, and everyone she was around adored her.

Here she is at the high school, just a few days after starting.
Here she is at the high school, just a few days after starting.

I didn’t anticipate the interesting dilemmas that would face me as she reached adolescence and age out of elementary school. I certainly hadn’t given much thought to puberty (wha??!). Now, as of a few weeks ago, she is a freshman in high school. Just having her enter high school gave me a few little late aftershocks of grief; my oldest is a senior, and I’m right in the midst of being thrilled and excited for her and everything that’s ahead while simultaneously being struck smack in the chest with loss knowing she’ll be leaving home. I’m reflecting on the weeks three years ago, seemingly just yesterday, when SHE started high school and had all these new adventures and experiences awaiting her. How could my talented, sweet, fun little bird now be so close to flying out of our cozy nest?

So you see the stark contrast in experiences, in feelings, I’m facing as my second-born enters high school. She has a very different future ahead of her, not bad, but just different. It’s one I am unsure of, that is not nearly as clear as that of my oldest, because it’s not a path I’ve already forged myself.

Yesterday I had the yearly IEP (individualized education plan) meeting with the teachers and other interested parties at the school. But this time felt so different than every single IEP I’ve attended for the past 15 years. I was struck again by how far behind she is academically, that given her abilities, she simply will not graduate high school with a diploma, will not master algebra, even, which I’m informed is the “lowest” math class they have available at the high school. We still struggle with simple addition. But that wasn’t too surprising; I hadn’t really expected her to “graduate;” she can receive a certificate of completion, though, and that was an outcome I was already aware of.

No, what cut to the core was hearing that the classes she’s in right now are probably not where she needs to be, not because they’re too difficult academically (even though they’re the really basic versions geared for those who need extra help) but because they still are not attended by her true peers. The kids in these classes have struggles, but they perceive my sweet little girl as weaker, as a target, and they tease her. She’s on the outside. And I HAD NO IDEA. Sure, it’s only a few weeks in, and I imagine the teachers were just waiting to broach this topic at this IEP meeting, but knowing that my daughter has been treated just a little badly by classmates BROKE MY HEART.

(I did find out about another option for her class-wise that will probably be the better place for her when it comes to both academics and peers/potential friends, and I am going to look into it, visit, probably switch her, but that’s another story.)

I got through the rest of that meeting, signed paperwork, listened some more, asked questions, and considered, but I was really just hoping it would end so I could leave and not burst into tears there in the classroom. I came home and grieved for a few hours. Even as my oldest went to her band rehearsal and attended an open house on college options and scholarships and did all the kinds of things I did 25 years ago myself, I grieved that my second-born would not do these same things.

Did I think I’d already accepted that outcome? Yes, indeed. But it just started becoming reality, and it was such a stark contrast. I still am unsure of exactly what my daughter will do; she probably will eventually leave home and live on her own, with others in an apartment or in a group place that’s fun and friendly and warm; she will most likely have a job that’s simple for her to do that she enjoys. But it’s different. And will she always be able to find a place where she has peers, where she can make friends who are like her? Because right now that hasn’t been happening these past weeks. Will I miss something again in the future where she’s being teased or not fitting in? I can’t bear to think of it.

Sometimes grief comes anew and we must revisit what we thought we’d already “dealt with.” We must adjust expectations again and face the reality we could only see through the hazy, murky lens of an uncertain future. And it’s OK to do so. As I grieve, I know I will come out of it with clearer vision and a renewed determination to help forge a happy, workable life for my second child. No matter what, I do know that she will be happy and will make others around her happy as well. She’s already done that for 15 years.

Every day with her is special

In honor of World Down Syndrome Day, I’ve decided to post in honor of my own special child, Marissa, who’s 13 1/2. I’ve written a bit about her already, but this post is specifically about my fun little kid.

Fourteen years ago, I found out I would be giving birth to a child with Down syndrome. I felt very blessed to know ahead of time that my baby had this extra chromosome. I’m the type of person who likes to be prepared, so it was nice to have half of my pregnancy to learn more about Down’s and just be ready to have a child with a disability. For me, what made it particularly nice was that her birthday was like any other baby’s birth: a day of joy and welcoming, with lots of photos, phone calls, snuggling with the new little one. If we had been surprised by her extra chromosome that day, I am sure a hush would have fallen over the room and there would have been feelings and reactions other than just pure joy and excitement over a new addition.

Marissa was the sweetest, most content baby I’ve had. She was happy to sit in a car seat or bouncy seat and just sleep or lie awake and watch me and smile back at me. She is still a very happy girl, no matter what. She has moments of frustration or anger or sadness, but they’re so fleeting it’s almost as if they never happened.

We’ve been very blessed that Marissa hasn’t had any health problems, no heart surgeries or anything that we’ve had to monitor. Over the years, she’s had a variety of therapies and extra services through early intervention programs and the school system, and she’s done really well. In fact, for a long time I could practically forget there was anything “different” about her. She walked right before she turned 2, and she has always talked fairly well and mostly clearly. She loves to read and does a great job sounding out new words. She just seems unbelievably bright to me and to others.

It’s now that she’s a teenager that I am more often reminded that she isn’t really in the same peer group as kids her age. She’s always been very small for her age, and the older she gets and the taller and more developed everyone around her gets, the more that distinction is pronounced. She is the size of an 8-year-old and behaves much like a 6- or 7-year-old, really. For a long time, she’s been quite happy playing with her younger sister who’s 4 years her junior; now she seems to be just as content to play with our youngest, who’s almost 5.

She was strictly in a regular classroom at school for some years, up until about 4th grade, when it seemed a better strategy to put her in a class with other students who had some learning disabilities of various kinds. She still gets to interact with her peers in p.e. or in art or computer classes now, but she has a better opportunity to have learning tailored to her needs in a special class. And I’m happy with that, mainly because she gets plenty of attention and seems quite happy with her class.

Marissa is eager to help and do nice things for others and she loves to hug. That actually can become a small problem sometimes because she’ll hug anyone, even someone she’s never met, and we have to keep reminding her not to do that.

At this stage of raising her, I’m honestly most concerned with her biological changes; she’s slowly starting to grow into a womanly shape (even though she’s still really tiny height-wise), and that means she’ll soon be experiencing other womanly changes I’m not sure how to address or warn her about as I did with my oldest. It’s all kind of a trial and error situation, raising her, but that can be said for any kid, I suppose!

There are tons of resources available out there now for parents of children with any disability, and there are many wonderful places to find information and support if you have a child with Down syndrome. The difference between what’s out there now and what was available just 14 years ago boggles my mind. The internet was barely around when she was born, with not nearly as much information as it has now, and my city library was where I turned for some information when I had my amniocentesis. I found a book that had a little useful stuff, but I think I was just looking for some photos of cute kids, and then I didn’t really find any. Now, there are some wonderful sites and resources that feature gorgeous photos of beautiful children and youths with Down’s, and it does my heart good. This organization, Band of Angels, apparently was around in 1998, but it wasn’t as easily found as it is now, and it just has beautiful photos. When I meet someone with a new baby who has Down syndrome, I either buy one of their products to send or tell the parent about it. It’s just reassuring to see other kids with Down’s given the adorable-photo-shoot treatment. I found it comforting, at least, when I learned about it.

In the first months of her life, I was actually given some books and tons of pamphlets and packets of information about Down’s and different resources available and services and ideas of things I could do to give her a stimulating environment and help her develop. Honestly, I barely read any of them. All that information is simply too overwhelming. When you’re just trying in those early days to get some sleep when you have a baby waking up at night for feedings and diaper changes, that’s the last thing you have energy for: reading and researching. And then as she grew, we had some good support systems referred to us, so I didn’t feel the need to go searching for a lot more.

I think it’s that way parenting any child. There’s always more you can do for them, but never enough time and energy. So you just do the best you can to make their life happy, fulfilled and enriched. Now, I just hope and plan for her to have opportunities as she finishes up with the school system to be able to live semi-independently and have some kind of work and a good support system and network of friends. I want her to have a happy life, just as I want for my other three daughters. And she seems well on her way. Marissa is one happy teen.

Happy world Down syndrome day.