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Tuesday, May 31, 2016

So you just had a baby with Down syndrome. Now what?


Itty bitty baby Quinn
If you’ve stumbled across this post, it’s likely because you are about to embark upon a journey you never planned for. I understand and remember that experience well. Learning halfway through my pregnancy that my son would be born with Down syndrome was like stepping into another world. I felt lost, isolated, and angry. I felt as if my life would never be “normal” again. I remember worrying that I would never be able to keep track of the different milestones, the doctor’s appointments, the therapy sessions. And to be honest, these things were difficult in the beginning because I didn’t know where to start. I also wanted someone to tell me the truth about my future; the internet is full of sunshine-and-rainbow accounts of raising children with Down syndrome, but I knew that couldn’t always be the case. Surely these parents were devastated by their child’s diagnosis and exhausted from the extra time a child with special needs requires, but I wasn’t seeing that on the blogs I read. 
When Quinn was born, I realized that Down syndrome was not a worst-case scenario, and despite my early misgivings, I wouldn’t change a thing about him now. My son is a light in this world and, had I known what to expect from the beginning, accepting his diagnosis would have been easier.

So first and foremost, congratulations! We often get so wrapped up in the fear and grief that accompanies this diagnosis that a lot of people forget that a TINY HUMAN LIFE just entered the world (or is on its way, if your diagnosis came prenatally). Seriously, congratulations. This isn't easy, but I promise you, it gets better. Once that's taken care of, consider the following steps:
  1. Love your baby.
  2. Love your baby.
  3. Repeat steps 1-2.

Feeling better yet? No? That's ok. It's probably because you have no idea what you're doing. If this baby is your first, those feelings are likely multiplied by 100. Don't worry, none of us knew what we were doing either. Sometimes I still don't. But the most important thing you can do are steps 1-3 above. The rest will fall into place. When you ready to move forward, here's what you need to know:


Let’s start with the tough stuff…

  • Medical Issues: Kids with Down syndrome are more likely to suffer from a myriad of health issues than typically-developing kids. They are prone to heart defects, leukemia, vision and hearing problems, respiratory issues, autism, and ADD. But before you wring your hands with worry, keep in mind that they also respond very well to treatment for all of these issues. The best advice I can offer is to find a pediatrician who respects your opinion as a professional parent. You will likely become an expert at Down syndrome care in the first year and you’ll be aware of the tests and screenings that need to take place, often even more than your pediatrician. A good doctor will take your research seriously and offer to help you find the right specialists and make the right referrals. Also be prepared to spend the first year of your child’s life visiting doctors who will rule out the aforementioned issues. My husband and I always joked that Quinn was such a good sleeper (he slept through the night almost from the beginning) because he knew how much we would need it. And we did. 
  • Developmental Delays: If you’re a first-time parent, you might not immediately recognize your child’s hypotonia (or low muscle tone), but those with experience holding newborns will likely notice that a baby with Down syndrome has less control over his body than a typically-developing child. This hypotonia is responsible for delayed motor skills like crawling and walking, and has a tendency to interfere with proper feeding and speech. As a result, you want to sign up for Early Intervention Services as soon as your child is born. These therapies will assist in the development of fine and gross motor skills and eventually speech. Both insurance and Medicaid often help families cover the cost of these services. To see who to contact in your state, visit: http://ectacenter.org/contact/ptccoord.asp

    credit: http://www.ndss.org/Resources/Therapies-Development/Early-Intervention


  • Other people’s perceptions: This was the hardest for me. Upon Quinn’s diagnosis, everyone suddenly became an expert on Down syndrome because their brother’s friend’s cousin once knew a kid with Down syndrome. These people’s well-meaning opinions and advice drove me crazy in the beginning. I didn’t want people to “pray for me” as if I were suffering from an illness, and I didn’t want to be told that “special people are chosen to raise special kids.” I didn’t feel special, nor did I want to separate my child from others as if he were already being labeled and isolated. There’s no easy answer for coping with these comments except to remember they’re coming from a good place. Remember that your child is an individual and is not like everyone else with Down syndrome.

But here’s the silver lining…

  • My life is “normal”: this was a pretty significant fear for me in the beginning. Would I suddenly become a social pariah because of my child’s disability? Would the time needed to care for him take over my life? Would my other children’s’ needs be met? Could I still work? When Quinn was born, I still worried about those things, but I can honestly tell you that my life is not any less “normal” than a parent with a full-time job and three young kids. Quinn is very much like any other child, though he is a little slow to meet major milestones (for example, when he was 12 months old, he was just starting to crawl, while my other kids were/are walking at that same age). Truth be told, some days these delays affect me and other days they don’t. The most important thing for me is that he’s treated the same way as everyone else. He receives just as much love and discipline as every other child his age. No one turns him away because of his disability.
  • Your child will light up a room: Atticus and Lucy are beautiful children. They have giant brown eyes with impossibly-long eyelashes and winning smiles. They know how to receive attention and deliver laughs. But none of that compares to the reaction I get from strangers when Quinn is around. I’ve seen women run from across a crowded store to fawn over him. And Quinn smiles brighter than any child I’ve ever known. He’s content, easy-to-please, and generally even-tempered. Except when he’s not.
  • You will make new connections with other parents: When we received Quinn’s prenatal diagnosis, I was introduced to many people in my community who are raising children with Down syndrome. These people have become my support system, my resource, my family. Their children inspire me as much as my own, and together we are a force that advocates for acceptance, inclusion, and awareness for the Down syndrome community. We’re also friends who get together often for picnics, parties, and play dates. I’ve found that most of these people would be dear friends even if we didn’t share this special commonality; it’s as if our children brought us together.

The journey you’re taking is slightly different than the one you planned for; this news is initially devastating to face. But it gets better. I can honestly say that I love my son fiercely just the way he is. I once read somewhere that we are sent here to learn, while those with Down syndrome are sent here to teach. I’m not usually one for the hokey message of fate and spiritual intentions; that type of euphemism tends to rub me the wrong way. But I can’t deny the person I’ve become since having Quinn. His existence is my greatest accomplishment. I’ve learned more from him in less than two years than I’ve learned from anyone in my entire life. He has taught me patience and perspective and helped me realize that the life I wasn’t planning for (a life that many actually take steps to avoid) is one I would choose to live all over again.
How can you not love this face?

Thursday, May 26, 2016

Happy Birthday, Lucy Louise!

One year ago today, my daughter came screaming into this world, ready to make her mark. As we navigated the flood waters of Houston, breathing through contractions and dodging cars going the wrong direction on I-10 in the pitch black 5am darkness because the other side of the freeway was underwater, I should have known Lucy was the kind of girl who would blaze her own path. She was ready to make her debut that morning, and no rising waters were going to get in her way. And as the year has progressed, her personality has blossomed before our eyes, dazzling us with her dimpled smile, demanding attitude, and ceaseless curiosity, all of which I saw coming that morning I went into labor. I knew her before she arrived, and yet now that she's here, she keeps surprising me.

One year ago today, I gave birth to my last baby. As a result, I've done my very best to cherish every snuggle, every milky warm breath on my chest, and every milestone, knowing it would be the last time I'd experience this list of firsts from one of my own. But a part of me is anxious and impatient to watch her grow. I adore clumsy toddling on chunky legs, and Lucy is getting closer to walking each day. I love when those first few words arrive, and we've had a slew of them over the past month or so. Lucy is a clever little thing, learning things at a rate I didn't realize was possible for a child her age. She is thoughtful and observant. She soaks it all in and turns it over in her tiny mind, figuring out what it all means. She loves to play with shoes and doors and blocks. She loves to put things in her mouth. She loves to babble and imitate and bang toys together. Most importantly, she loves to laugh these huge belly laughs that fill the whole house with such happiness that I fear the windows might break from trying to hold it all in. And while there will come a day when I will mourn the loss of baby toes and fluttering eyelashes, I acknowledge that time stops for no one, not even a mother desperate to cling to the final stages of babyhood.

We celebrated this little lady last Saturday at Gamma and PopPop's house. My mom outdid herself making the event a special one and all my favorite people here in Houston were able to join us. Even as a storm rolled during the "Birthday Song" (which is fitting, given the day she came into this world), I was still snapping pictures while her brothers swiped frosting from her pink smash cake. It was a special moment that I'll cherish forever, made even more special by the ones who helped us celebrate.

Happy birthday to my sweet lil' Lu. We are so happy you joined our family and made it complete. Your brothers adore you and your parents are in awe of you. I can't wait to see the strong, intelligent, and selfless woman you'll become someday, but only after we get a few more years of those chunky baby thighs.









Monday, March 21, 2016

World Down Syndrome Day





Today is 3/21, which means that it's World Down Syndrome Day, in honor of the 3rd copy of the 21st chromosome. Our community chooses to celebrate in many different ways, from wearing crazy socks to posting pictures on social media of our loved ones with Ds. I usually make some basic statement about what Down syndrome means to our family under an Instagram picture and consider it done. But since I a) haven't posted to the blog in ages (sorry; I also realize my last post was, ironically, about my New Year's resolution to write more) and b) have a bit more to say today than usual, I decided to make it a full-fledged entry. I haven't written about Down syndrome in a while, so there's quite a bit of commentary I want to get off my chest and it's not all pretty. But keep reading; I like to end on a high note.

The purpose of WDSD, which began in 2006 and was recognized by the UN in 2012, is to promote awareness for individuals with Down syndrome. There's something very special about a community coming together with one voice to advocate for our children, brothers, sisters, and friends. We want desperately for society to recognize the worth of individuals with Down syndrome and that they can play vital roles in their communities. But sometimes I worry that days like today paint an unrealistically rosy picture of families raising kids with Trisomy 21. We need a day of awareness because Down syndrome means we have hurdles to jump and struggles to overcome, but I've learned that it's frowned upon to admit that raising a child with Down syndrome is challenging. And there are members of this community who will roast me for this comment, especially on a day of awareness and celebration, but sometimes Down syndrome is hard.

Until now, it was a part of my son that necessitated extra doctor's appointments and early intervention. But as I watch Quinn move from toddlerhood to legit preschooler, his delays in speech and cognition are making life more difficult for him and it breaks my heart a little. Quinn is typically a happy little guy, but I can't help but blame Down syndrome for the things that upset him. Down syndrome is the reason that he can't express what he needs. Down syndrome is the reason that he isn't potty-trained, that he doesn't know his colors or shapes yet, that he has to have yet another surgery on Friday (it's just a routine tonsillectomy, but this is his 3rd surgery in as many years, and Down syndrome is the reason we'll likely have to stay overnight when other kids receiving the same procedure will sleep in their own beds that night. Down syndrome makes it difficult for Quinn's oxygen saturation to normalize after anesthesia, requiring additional observation).  And in the grand scheme of things, these are minor issues. Quinn will catch up, he will learn to speak, he is relatively healthy, and he has a support system that will ensure his well-being both now and in the future. But as any special needs parent will tell you, our lives as parents are different because of Down syndrome. Our decisions are always made with Down syndrome in mind, from something as simple as where to eat dinner to as complex as where to live and send our kids to school. And just because we put on a brave face and act like it's no big deal, sometimes Down syndrome is overwhelming.

On this day especially, I want people to believe that my kid is capable of living a fulfilling and purposeful life, that he has so many things to contribute to society. I need people to believe this. But it also makes me feel like I'm not allowed to discuss the challenges we face. Sometimes these moments of awareness gloss over our needs and make us feel like we we're not allowed to doubt their future success, which isn't really fair because I have the same concerns and worries for Atticus and Lucy, too. Why can't I worry about Quinn out loud? If we spend all our time advocating for how much our kids are like everyone else, people might forget that there are a unique set of obstacles before us, and that we need support as much as we need acceptance. The future of special education, quality healthcare, and community advocacy groups all require adequate funding and support, none of which will happen if we keep convincing everyone within earshot that Down syndrome is the best thing to ever happen to us (yes, I have read those words many times).

I'll be honest; I wondered if I should even post this. I know there are readers out there who are considering termination after a prenatal diagnosis. I'm terrified that this post will sway your decision and I implore you to keep reading. There are readers out there who just had a baby with Down syndrome and you feel lost and scared. These words may have offered you little comfort, so I beg you to make it to the end.

While there are times that I hate Down syndrome, there are times when I love it. I love the community of support that comes with this diagnosis. If you are new to this world, you are now a part of our family. And we're pretty freakin' awesome. I love the pure, unadulterated joy that radiates from Quinn. He enjoys his life and we enjoy him. He loves those around him with such willful abandon that I know his soul is pure and I have grown as a person because of him. Quinn has made me more patient, more understanding, and more kind. Quinn is a magnet for attention, too. We can't go anywhere without strangers fawning over him because he's cute. I mean really, really cute. I suppose we can thank Down syndrome for that as well. And for all the things that make our lives more challenging, I wouldn't trade it for a Quinn without Down syndrome. Because that extra chromosome exists in every cell in his body, which means that it is a part of his sparkling personality, his beautiful blue eyes, and his stubborn, yet resilient charm. Those things will serve him well in the future and, while they might not erase the challenges caused by that extra chromosome, they do make it all worthwhile.



Wednesday, December 30, 2015

New Year's Resolutions for the Whole Family

New Year's Resolutions are becoming harder for me to make. With each passing year, I watch myself make and break the typical goals of cleaner eating, more hours at the gym, and less screen time. According to a 2013 study by Scranton University, only 8% of people keep their New Year's Resolutions. Given my track record, this comes as no surprise. My gut reaction when I hear the word "resolution" is to roll my eyes and question the point; by February the only action my running shoes will see will be collecting loose french fries on the passenger seat of my car.

But this morning, while watching television and decidedly not exercising, my 5-year-old overheard the morning show news anchor discussing resolutions and, being the curious child that he is, he asked me what that meant. In explaining it to him, I not only remembered the importance of setting goals to better one's self, but it also dawned on me that the one way I might meet my goals for the new year is if my kids hold me accountable (and they might learn a valuable lesson on personal growth in the process). We discussed the concept of New Year's Resolutions and I told him that every year I try to eat healthier foods and get more exercise, but some other people choose different goals depending on how they want to improve their lives. Since I've never been very good at keeping the aforementioned resolutions, I decided to ask my son what resolutions should I make for myself. Perhaps he knew a better way to a better me. Given that change doesn't come from doing the same thing over and over again and expecting different results, I shouldn't have been so surprised by his answers:

1. Take me to the park more.
2. Don't clean the house so much.
3. Be silly.

And he's right. I haven't been very good at those things on the list. I found myself trying to give excuses for my behavior. The weather hasn't been very nice for the park lately. Our house is small and crowded, so it needs to stay clean. I'm tired when I get home from work. But what good are excuses in the face of 5-year-old honesty? These are the things that matter to him and, quite frankly, these are pretty easy changes to make. So my goals for 2016 will center on ways to be a better person in my children's eyes. Considering I'll have more influence on their lives than anyone else, I should take it seriously. And no one can hold me accountable better than my kids.

But the lesson doesn't end there. I told my son that he needs to think about choices and changes he can make to improve himself in 2016. The list he rattled off was far longer than the one he made for me. I find it interesting that we develop our sense of good versus bad, helpful versus harmful at such a young age. Granted, one of his resolutions was to improve his Lego Star Wars video game performance, but the rest of his goals were quite indicative of his moral development. They include but are not limited to eating more vegetables because they're healthy, practicing soccer with Dad, and earning a 100 on all his spelling tests for the rest of kindergarten (yes, there are spelling tests in kindergarten; I could hardly believe it myself). What was even more surprising was that his list didn't require a great deal of thought; he knew immediately what was important to him. Perhaps that's the key. Perhaps we need to make our goals simpler, more attainable, and relevant to our immediate needs and wants. Or perhaps he wanted to end the conversation as quickly as possible because his favorite show was about to come on TV. I'd like to believe it was the former.

This exercise was about more than setting important goals for myself; it helped me to realize what's important to my kids. It helped me remember the value of personal growth and that it's never too early to start thinking about ways to become better. But most importantly, it allowed us to create resolutions that will bring us closer together as a family. The years of raising small children is exhausting, but it's temporary. I have a feeling that when I blink and they're teenagers causing all sorts of rebellious trouble, I'll wish I spent more time cherishing these innocently messy years. And if I can instill in them the importance of self-reflection and self-growth, then maybe I won't have to drive them to court after an especially rowdy mailbox-smashing joy ride when they're 16. It's a win-win.

Friday, December 18, 2015

Happy Birthday, Quinn!

I'm having a hard time wrapping my brain around the fact that Quinn is THREE years old. Seriously, where has the time gone? Nevermind. I know the answer. It's been spent chasing this kid up and down the stairs, telling silly stories, making convincing and often-terrifying dinosaur sounds, and reminding him to use soft hands with his sister/the cat/my eyeballs. Time flies when you're having fun, I guess. But this year's birthday snuck up on me. In years past, I've found myself agonizing over the birthday milestone and remembering that Quinn was still so very far behind developmentally. This year, that hasn't even crossed my mind. Not because Quinn doesn't still have those same struggles; he's very different from a typically-developing three-year-old, but he's thriving and happy and a true joy to be around. And that's really all I want for my kids. They don't need to fit into some mold of perfection that we create when we become parents; they just need to be happy, dammit.

And there's been a lot of talk lately about Quinn's happiness. At the age of three, kids with special needs qualify for services through the public school system, including speech therapy services and even in some cases full-time early childhood education. We waived our right to the latter since Quinn's best placement is at The Rise School, but it puts an added emphasis on this year's birthday since we need to start thinking about what we want for his educational future. As we approach these last few years of preschool and his graduation from The Rise School looms in the distance, we have to make a choice.

Do we:

A.  Push him to be a self-advocate in the sink-or-swim world of public education? Do we fight for an inclusive setting where he'll likely be one of the few kids--maybe even the only kid--with Down syndrome, but where he'll learn autonomy and have a fighting chance to attend college, get a job, and function independently as an adult? If we go that route, will he become fodder for inspiration porn? You know, those viral videos of the kid with special needs being voted Homecoming King or victorious in wrestling match that the "typical" kid threw simply because his opponent has Down syndrome. You guys, I HATE those videos. My kid is not a mascot. He's not here to make other people feel better about themselves. But he does have an opportunity to help other students understand and respect differences, and there's a great deal he can learn from typically-developing peers.

Or do we:

B. Continue with private education where he's surrounded by kids like him? A place where he'll be safe and comfortable, where he'll receive the intensive interventions he's been receiving at The Rise School, but which also might prevent him from learning to interact with the world outside his special needs bubble? Will he even need those interventions beyond the early childhood classroom? Rise's model is based on the hope that he won't, and he is truly thriving there, but is he thriving enough to join a typical kindergarten classroom when the time comes? Will that social comfort be stunting to him as he gets older. Will being around his siblings and their friends be enough interaction with typically-developing peers?

All these questions come out of a genuine desire to do what's best for Quinn. I want him to determine his own path based on his goals for himself, not mine. But I highly doubt Quinn will know his goals at age 5, when these decisions must be made. The extent of Atticus's goals at this same age are to build the latest and greatest Star Wars Lego and to get fruit snacks when he gets home from school. So it's up to us to figure out what's best for him for now. We have time, but with every birthday, we get closer to that decision-making deadline.

While we weigh our options, we'll also soak up these years and enjoy the time we have with our fun, mischievous, hard-to-catch little boy. In that spirit, here's a fun glimpse at Quinn now:

  • Likes: dinosaurs, Lucy, anything Atticus likes, books, running to be chased, taking off his shoes and socks when we're already late and insisting that he be the one to put them back on, school, dancing, and ketchup.
  • Dislikes: when there's no ketchup.
  • Words: ketchup, mama, daddy, Elmo, sock, dino, "ucy" (for Lucy), "caca" (for Atticus. I know, it's tragically funny), book, car, truck.
  • Skills: running, jumping, kicking a ball, drinking from an open cup, using scissors to cut a straight line, drawing circles (though he has zero interest in this skill), following multi-step instructions, completing puzzles with little assistance, stringing beads, and walking up and down stairs.
  • Adjectives to describe his personality: stubborn, social, loving, and energetic.

Happy birthday, Quinn! We love to pieces! 

 

Tuesday, December 1, 2015

#GivingTuesday

Today is #GivingTuesday, a time when we take a break from elbowing each other in the groin on Black Friday to save $50 on a new TV or spending the entire workday shopping Cyber Monday deals when you should be answering emails. It's a time when we consider the causes that are important to us and give what we can to help those in need.

As you know, Quinn attends The Rise School of Houston, a preschool for children with and without disabilities. It is, without question, the BEST place for his development and early childhood education. At Rise, Quinn receives speech, physical, and music therapy. He shares a classroom with 9 other children and 4 teachers (one of whom has a disability), and together they learn the skills needed to be independent, social, and ready for kindergarten. But, as the Rise website will tell you:

$24,000 – that’s the true cost to educate a child in Rise Houston’s intensive, highly effective program each year. A small price when the long-term payoff is so great. Yet the price is still out of reach for most families. To keep Rise affordable for families, tuition is set at a portion of the real per-student cost, about $1600 a month or $19,000 a year in 2012-13. Two-thirds of our families apply for and receive scholarships of 20%-70% off full tuition based on their needs, but every enrolled family pays something.

Without the help of donors like you, Rise would be impossible for many families, including our own. Can find it in your heart to give, even just a small amount, to make Rise a reality for deserving families? If so, you can donate here.

If you're still not convinced, just watch this video to see all the great things this school is doing for kids like Quinn, Atticus, and Lucy. We are so fortunate to have this amazing program in our area and are eternally grateful for the donations that make tuition and attendance possible for my children and all the others that make our great Rise School family.

Wednesday, November 18, 2015

More Love, Less Hate



Back when I first started this blog, I wrote a post about the impact of social media on the political and social climate, specifically during the Arab Spring of 2011. I argued that after tens of thousands of Middle Eastern citizens in countries like Egypt and Syria took to social media to organize protests against oppressive regimes, Facebook could save the world. I argued that social media was a platform for voices otherwise silenced. Now, I'm not so sure. Now, there’s too much noise. 

With the recent attacks in Paris, everyone with a profile picture is suddenly an expert on how to stop ISIS, how to deal with Syrian refugees, how to properly honor victims of terrorist attacks. I recently read an article that congratulated me on my “corporate white supremacy” after changing my profile picture to the colors of the French flag. Apparently I am not mourning the loss of life properly. Apparently I am an enemy worth fighting, as if we don’t have enough of those already.

In times of war, our fear and anger have a tendency to mask our humanity. I’ll be the first to admit that I have strong opinions on the world’s most recent crises and I cringe when I see fear drive the political climate at home and abroad. And I won’t claim that these opinions never make it to my Facebook profile, but I try to do so in the hopes of starting a logical and respectful dialogue. Unfortunately, the recent vitriol and polarization of social media, mainly among Americans, is enough to make me close my account forever. Suddenly everyone has a soapbox, but most people don’t have the research or facts to do much but ramble up there ad naseum. I’ve read misguided opinions that we should drop nuclear weapons on an entire portion of the world. I’ve listened to interview clips from so-called experts comparing Islam to Nazism. I’ve seen memes so racist, they would make a Klansman blush. But, most disturbingly, I’ve seen people that I know and love spew hate-filled and angry rants with anyone who has the gall to disagree with their opinions.

The beauty of our freedoms as Americans is that we have the right to disagree with one another. We have the right to uphold different values and opinions. Hell, we even have the right to be complete assholes to each other, but that doesn’t mean we should, because we also have a responsibility to care for one another. And if you want to stop a terrorist regime bent on hate, then we’re not going to do it with more hate. Or as a divided front. ISIS wants us to attack each other, they want us to make each other the enemy. They want us to hate Syrian refugees, to steer our focus towards our own differences, so that we’re not paying attention before they strike again.

So I ask that we all take a moment and consider the future we want for our children. I want you to stop before you reply to a random person’s comment on a Facebook page and pretend that you’re talking with your mom, your best friend, your coworker. You’re talking to another human being, very often on the subject of other human beings. And regardless of where you stand on the Syrian refugee issue, please remember that 99.9% of these people are risking their lives to escape our common enemy, many of whom have small, hungry, and traumatized children in tow. So don’t call them monsters or terrorists hell-bent on killing us. I want you to remember the reason we’re all so opinionated on the matter: because when attacks like what happened in Paris, in Beirut, in the Egyptian skies occur, it means that hate is winning. And I, for one, would prefer the alternative. Perhaps we should start at home.