Wednesday, January 20, 2016

An Uncomplicated Life

      Holy cow, if blogs could gather dust, this one would need an industrial strength vacuum to clean it. It's been a while. We've been chugging along with school and work. Both boys have adjusted to this school year beautifully.

     Today, I took a sick day to stay home with Bryce, who is recovering from a stomach bug. It gave me the opportunity to finish the book I was reading. It is called An Uncomplicated Life: A Father's Memoir of His Exceptional Daughter. It was written by Paul Daugherty, a sports writer, about life with his daughter Jillian. Jillian is a funny, charismatic, thoughtful, determined young woman who happens to have Down syndrome. My husband bought it before a recent trip, and of course I hijacked it as soon as he got home. Reading is my crack.

    Reading books about people with Down syndrome is always an emotional roller coaster for me. I laugh, I remember, I cry, I worry, I relate. I feel guilt for not doing enough. I question myself. I have been realizing more and more lately that we need to start doing something about Bryce's future. Our first year with Bryce was adjusting to the idea, falling in love with him, and shock. The last two years have been a lot of worrying, knowing that we should be doing something, and wondering what that something is--and where the money to do it will come from. So far, it's been about enjoying his smile and hugs....cheering him on, watching his love affair with his big brother. But he's not going to be a cute little boy forever. The hard stuff is coming. And we're not prepared.

    I'm really good at worrying. What I'm not good at is action. Those who know me well may be shocked by this, but I'm actually a very shy, self-conscious person. Making friends is really hard for me. Making phone calls requires an internal pep talk. There have been many times lately that I wish we were part of this big Down syndrome network I hear so much about. I follow Ds groups on Facebook. We've been to Gigi's Playhouse a few times. I've looked up our local group's meeting schedule several times. I know the network is out there....but I've been hesitant to jump in. Part of it is denial (still), part of it is avoidance, but the biggest part is that self-conscious, shy, introverted girl I have inside. Joining is just plain hard for me.

   That is why I'm thankful people like Paul Daugherty are willing to share their story. I can learn from him, because he's been through it. His formerly adorable little 3 year old is now a grown, married woman  who graduated high school and experienced college. He and his wife have been in our shoes and I can learn from them. I envy their attitude and their work ethic. From the moment their daughter was born, their motto for her was "Expect, Don't Accept". I do expect great things for Bryce. I expect him to live on his own one day. I expect him to make friendships, find hobbies he loves, and fall in love. Paul Daugherty and his wife have shown me what it takes to make sure that happens. Expect, don't accept.

    The thing I loved most about this book, though, was the author's ability to put into words what I have always tried to express. I post videos, pictures, and anecdotes of Bryce online, DESPERATE for people to see his joy, his "magic". Everyone thinks he's adorable, but DO YOU GET IT??? You can't possibly get it unless you know him like we do. But I'm desperate for you to understand. He isn't a typical boy. He's pure, unadulterated joy. It's nearly impossible to have a bad day when Bryce is part of it. And 90% of people who find out they are expecting a baby with Ds abort. I just don't get it. They don't get it. Most of the doctors don't get it.



   In An Uncomplicated Life, one of the last chapters is titled "Number 47". In that chapter, Mr. Daugherty talks about that 47th chromosome that makes our kids so unique. For some reason, our Bryce was given 47 chromosomes instead of the usual 46. What exactly does the 21st chromosome do, and why does having an extra one lead to the shared characteristics of people with Down syndrome? I don't know. But I completely agree with Paul Daugherty when he calls that 47th chromosome "a storage tank for all her good stuff". He says, "Number 47 contains a lot of what makes us good. It has to. Somewhere in that bonus wiring is a connection to compassion and kindness--a plan for how to be better."

    One of our nurses in the Level II nursery wasn't sure that people with Ds aren't just more evolved than the rest of us. She talked about how we don't have a right to take their lives or underestimate them....maybe they are better than the rest of us. They have more genetic material than we do, after all, not less. The more I get to know Bryce, the more inclined I am to believe her. Jillian Daugherty, and Bryce, and the thousands of other people living with Ds know something we don't. Don't worry so much. See and assume the best in people. Love and be loved. Live for today. Do everything with joy and gusto. Life doesn't have to be so complicated.


Monday, August 24, 2015

A Letter to Connor

My big boy starts kindergarten in a couple weeks. Since he went to preschool full time last year, this doesn't seem like a big deal most of the time. But it is. This year starts the next thirteen years of his life. Thirteen years of school buses, homework, play dates, hurt feelings, stress, and after school activities. Thirteen short years before he goes off and leaves his mama. Some thoughts before you go, big boy:

Dear Connor,

     You start kindergarten in a couple weeks. I'm so excited for you.

     I have so many hopes for you. I hope you learn a lot. Despite what you may think, you don't yet know everything. Let your teachers teach you--and more importantly, don't forget that your classmates have a lot  to teach you too. Make sure you stop talking long enough to listen to them. Share the spotlight.

     I hope you learn to face challenges head-on and don't give up right away. You are so smart, and a lot of stuff comes easily for you. This makes it even harder for you when something is a challenge....you have a tendency to be very hard on yourself and give up if you don't get it the first time. Know that some things will be a challenge, and that is good. Overcoming those things is what will make you stronger.

     I hope you never lose your enthusiasm for learning.You just love school and learning new things. I hope you always feel that way. Challenge yourself; go above and beyond expectations. Always raise your hand and take risks--even when you get up to the middle school where that isn't always the most popular way to be. The day you come home saying you're bored will break my heart. Your positivity and enthusiasm are some of your best traits. I want to be like you.

    I hope you never feel lonely, left out, or picked on....but it most likely will happen. I worry about this especially with you, because you are such a sensitive kiddo. Every hurt you feel, I will feel right along with you. But remember that those times will pass---and you have, in your own words, "thousands of people" that love you. Don't let the mean kids win.

     Probably most importantly of all: I hope you are always kind. I have been proud of you since the day you were born, but nothing makes me prouder than seeing you be a big brother to Brycey. You know how protective you are of him?---scolding mama for scolding him.....telling grandparents to take good care of your brother.....making sure there are no injustices for him....bragging to your teammates and friends about how well he's walking (even without his braces!), telling everyone you meet that THAT'S your little brother!--do that for others too. There may not be kids in your class with Down syndrome, but there will be kids that struggle. There will be kids that need protecting. Help them. Protect them. Stand up for them. Be kind to them. Just like you will want kids to do for Bryce.

    Do I want you to be rich and successful so you can provide for ME someday? Of course :) Do I want you to become a world famous paleontologist, or race car driver, or chef, or whatever you end up dreaming of? Of course. But more than anything, I want people to remember what a nice boy you were. Your three-year old preschool teachers described you as a ray of sunshine, that class just wasn't the same without you there. That's what I want you to strive for. Be a positive, sunshiney addition to your classroom. You certainly have been for our family. I love you whole world.

xoxo, Mommy

Wednesday, May 20, 2015

My Baby is Growing Up :(

Hello Poor Neglected Blog,

   We have kind of just been plugging along without much excitement to report.

    The past two months, we have been in the process of getting all of Bryce's preschool evaluations done. Yes, you read that right. BRYCE. PRESCHOOL. I can't even believe it.

    There is a lot that goes into starting preschool when a child has special needs. Since Bryce has a summer birthday, they had to start doing all of his evals this spring in order to get it all done and written up before the end of the school year. That way, when he starts school in the fall, everything will be ready to go.

    As part of the special ed program, Bryce will be in school every morning--five mornings a week. He'll be in an inclusive classroom three days a week, and a special ed classroom the other two. Those two days, he will work with his speech therapist, OT, PT, etc. He is still my baby in so many ways, I just can't wrap my head around him sitting and participating in a classroom every morning! He will love it, and I'm sure he'll do well, but I just can't fathom it. Luckily, we still have a few months!



   Leading up to the evaluation results meeting, his early intervention teacher  warned me that they can be very difficult meetings. As a teacher, I know these reports need to be deficit-based in order for kids to qualify for different services. We recieved the report in the mail last Friday and had the weekend to look it over. It was lengthy, and nothing was really a surprise, but it is still difficult to see  the short "can do" list, and long "can't do" list. It is hard to see your child in the single-digit percentiles. (Except for his rockin' fine motor skills--in the average range for all kids his age!!)

    But you know what else? These evaluators (most of which didn't know him prior to the evaluations) also saw his strengths....and he has lots of them. They fell in love with him, as most people do. They really did a good job of capturing the whole Bryce (as much as one can in an hour-long evaluation).

    Yesterday, we finally had the meeting to discuss results, ask questions, talk about the school plan, and look over the draft of his IEP (Individualized Education Plan). As I sat around the long table in the conference room of his future school, I was amazed by how many people are already invested in him. I also know (as a teacher) how most of us feel about IEP meetings...especially IEP meetings at 3 pm--blech. But, in some way, these people were all invested in doing what's best for Bryce. We got to meet his teacher for next fall and hear about all the ways they are going to keep him safe and learning and growing next year. The speech therapist, adaptive phy ed teacher, OT, PT, principal, and early intervention teachers were all there, as well as the evaluation team. All for our Brycey.

   The meeting was not at all scary or negative--in fact, it started with the cognitive evaluator giving us (Bryce) the best, most encouraging compliment I could have asked for--and have been wanting to hear since he was born (I'm not going to write it here, but just know it was a VERY encouraging statement :).

   While I still can't imagine him in school, I feel pretty darn good about the hands we are placing him in. We are blessed with that one, indeed.

    Happy early Memorial Day, friends! NINE more days of school for Connor and me. Whoop whoop!

Thursday, February 5, 2015

It Sucks, Doesn't it?

When I was pregnant with our second son, my biggest worry was making it to at least 34 weeks so I could deliver at our wonderful local hospital, which doesn’t have a NICU. My first son was premature, and all the signs pointed to this one coming early too.


On July 31st, 2012, at 33 weeks and 6 days gestation, I gave birth to a beautiful 6 pound, 3 ounce little boy. Although he was early, they let me hold him for a few minutes before whisking him away to the nursery to be checked out. A few minutes later, my husband and I heard the words that we will never forget: “I am seeing some things that lead me to believe your son has Down syndrome”.


We had no idea. We were monitored so closely, and had so many ultrasounds….how did we not know about this? We thought life was over. Our older son won’t have a “normal” brother. He’ll live with us forever. People will stare at our family. It was terrifying and heart-wrenching, and the hardest day of my life.


Despite being perfectly healthy, Bryce had to stay in the nursery for a few weeks to work on feeding and building strength. During that time, our family, friends, and all the hospital staff were so wonderful. We could not have asked for more supportive people surrounding us during that time. Everyone rallied around us, telling us what great parents we are, how lucky Bryce is to have us, that God doesn’t give us things we can’t handle, etc.





All of those wonderful, supportive comments, but the best thing anyone said to me during that whole stay in the hospital was this: “It sucks, doesn’t it?”.


There happens to be a nurse in a different part of the hospital that has a son with Down syndrome, and makes himself available to talk to new members of the club. After hearing that we did NOT have a prenatal diagnosis, and I’m sure seeing the shock and worry that was still on my face weeks later, he said those four words…..”It sucks, doesn’t it?”.


Don’t worry, he went on to show me pictures and tell me that it does get easier, but at that moment, I appreciated those four words more than anything anyone had said to me. Those words validated my feelings and lessened my guilt. To have someone who has been there, and has come out on the other side tell me it was okay to feel that way...it was just what I needed.  He didn’t try to sugar coat things and cheer me on. He just met me where I was in the process, and sympathized.

I don’t remember much more of our conversation. We are two and half years in now, and know that Down syndrome doesn’t really suck much at all...in fact, I wouldn’t change a thing about Bryce….but I will never forget those words from a stranger. Sometimes we don’t need advice; sometimes we just need validation.


Wednesday, January 21, 2015

Labels

          I have read a few blog posts recently on the topic of labeling someone as "special needs" vs. "disabled". I am certainly no expert on this. Anyone who really knows me is probably aware that I'm not always the most politically correct person. I can't speak as a person who has a condition that would require a label...but I do know what I prefer for my son. How about we just say he has Down syndrome?

        Down syndrome is a diagnosis. It can be proven. When Bryce was born, we had chromosomal testing done that determined he does in fact have Trisomy 21.....three copies of the 21st chromosome....otherwise known as Down syndrome.

       Having Down sydrome is legally considered a disability. Having that "label" allows Bryce to recieve services and benefits that otherwise would not be available to him. Someday, I will be grateful for that. In fact, he is already benefiting from the 'label' with his early intervention services.

       As a language person, though,  I dissect that word in my head, and I don't care to think of my son that way. The prefix dis- means apart, away, or having a negative or reversive force. So, if we really look at the word disability, it is saying my son is the reverse of able? He is apart from having abilities?

       Will Bryce have some disabilities? Probably. I doubt he will ever be a professor, or play in the NFL. Do I have some disabilities? Absolutely. They are called higher level math and organization :)

     But is Bryce the reverse of able? Absolutely not. He is ABLE to brighten a person's day. He is ABLE to form an opinion. He is ABLE to feed himself with a fork. He is ABLE to break stereotypes with a single interaction. He will walk, he will read, he will move out of our house and break his mama's heart someday.

    Will he HAVE special needs? Of course. He will always need someone to check up on him. He will need more time and patience. He will need modifications in school. Is he special needs? No. He is Bryce, and he has Down syndrome.

     Having Bryce has taught me so much about the special needs/disabled community. I never thought much about what to call someone. I realize now that I need to call people who they are....their name first, then maybe, if necessary, their diagnosis. It is called "people first" language. Labels are sometimes necessary, and I am not in denial about what struggles Bryce's future likely holds. I just don't like to think of my son as anything other than who he is....my sweet, sassy second born.

     

Thursday, January 1, 2015

2014 Highlights

        It's always hard to believe another year has passed. I usually get a little depressed on or around New Year's Day....maybe because time is passing, maybe because I feel like I didn't accomplish much.....I don't know why. For whatever reason, I don't feel it this year. Maybe because 2014 was an exciting year, and there are big things to come in 2015 as well. I have been reflecting back on the year, and realized how bad I was about blogging, so I need to get some of these memories recorded! Here is my Larsen Top Ten of 2014 (in no particular order):

1. BACK TO TEACHING! This was by far the biggest thing that happened to our family this year. I was a miserable stay-at-home mom and I am so much happier now that I'm back in the classroom. The school I am teaching at is awesome, the kids are awesome, the commute is awesome, and my colleagues are awesome. I am more fulfilled as an individual, which makes it easier to be a better wife and mother. It's been a win for everyone, I think.


2. CONNOR STARTS SCHOOL. Okay, I guess he technically started school in 2013, but going for a few hours two mornings a week is nothing compared to the full-time preschool he is in now. He has adjusted well (with a few rough, tiring days, but that's to be expected), and I'm so proud of how well he is doing. He's a leader in his class, and has so much enthusiasm for learning. I hope he doesn't lose that. He also really started reading in 2014, and I am obnoxiously proud of what a little reader he has become. You really take being able to read for granted until you see how much more of the world opens up for your child when he/she starts reading.


3. BRYCE STARTS DAYCARE. In February of 2014, I started a long term subbing job three days a week. We had to find a daycare for the boys to go to two days a week. Contacting people and arranging things like this has always been difficult for me. I'm actually quite awkward when meeting new people, and have a phobia about making phone calls. Adding Bryce's Down syndrome to mix when looking for daycare made me that much more nervous. We are so blessed that he really doesn't have any special medical or dietary needs. Really, other than needing more time to figure things out, I don't really even see him as having "special needs". But, I was worried the Ds would scare people away. Our provider was not only willing to take him, but excited. Her mother had worked in a group home (or something) with people with special needs, so she knew that they deserve to be treated like anyone else. She is now completely in love with him, and does a great job working with him. We are lucky to have her, and he has grown so much since starting full time this fall.



4. BAUER MOVES TO OMAHA. We said good-bye (kinda) to our dog, Bauer in February. With Mike's travel schedule, I just wasn't able to handle everything. Bauer was neglected, and it was a lot of work for me--especially because I was still working evenings and weekends at Cub. He is much happier with the large fenced-in backyard and walks that he gets with Molly and Brett. I'm not so sure they don't regret the decision at times, but I am grateful for the new situation. It was hard for the boys (especially Mike) to say goodbye to our sweet doggie.



5. CONNOR PLAYS SOCCER. This past summer, Connor played a team sport for the first time. It was definitely....interesting. We're hoping for improvement this summer, and I fully expect that he will be much better with a year under his belt. He's finally showing a bit more interest in sports, and I think 2015 will bring us T-ball AND soccer.

6. EASTER IN OMAHA. We decided to head down to Molly and Brett's house in Omaha for Easter. It was the first holiday I had ever spent out of town, and it was really nice. The weather was beautiful, and it was nice to have more than a rushed two-day weekend down there.



7. QUICK TRIPS TO DULUTH AND FLORIDA. It was only about 24 hours total, but we had a nice family getaway to Duluth in July. Since becoming parents, Mike and I have taken advantage of our few chances to go on vacation withOUT the kids. It's just not really a vacation with little kids....especially when they're so young they won't remember or appreciate it. Because of this, Connor appreciates any little trip he gets to take. Now that he is getting older, we will try to include the kids on more vacations, but thus far, I'm proud of how much he appreciates the little things! Mike and I also managed to sneak away to Jacksonville, FL for a weekend in December and it was great to have some quality time together. Very relaxing!



8. BRYCE GETS ORTHOTICS. You wouldn't think this would be a highlight, but Bryce's orthotics have helped his large motor skills tremendously. He is two and a half and still isn't walking. Since getting his cute little braces, he is showing so much more confidence, is bending his knees while walking and getting down from a standing position, and can walk holding just one of our hands. He has also started showing more interest in walking (and frustration in not being able to), so I'm hopeful it will be soon. He's getting awfully heavy to carry around!


9. MIKE'S CRAZY TRAVEL SCHEDULE. With something like 35 flights totalling 64,000 miles, Mike's work travel schedule really picked up in 2014. It seemed like he was going to Panama every two months (and during every snow storm last winter) last year! And of course, the two dreaded Philippines trips were the worst. We have all gotten better at handling things while he's gone, and getting back on a regular day time work schedule has helped tremendously. 2015 should be even better because.....

10. MIKE GETS A PROMOTION AT WORK! Just in the last month, Mike has started a new position at work. It is on the same team, and he is still dealing with call center vendors, but he now has a manager position. He will still be traveling (and still has the Philippines account), but they will hopefully be shorter trips....and mostly domestic. No more Panama....and hopefully shorter Philippines trips. He worked hard for this promotion, and I am very proud of him. The raise doesn't hurt either :)


     It is nice to start a new year without the usual "funk". 2015 will be another big one....my "babies" will turn three and six. Connor will start kindergarten, and Bryce will start preschool. I feel like I officially won't have a baby anymore! I am so looking forward to a summer without working evenings and weekends and hopefully being a little more comfortable financially. Things are looking good for a great new year.

     I hope 2015 brings nothing but good things to all of you, my friends! Cheers!



         

Friday, October 3, 2014

Adjustments

Hi Friends,

    I have been absent for so long....so much going on, and nothing profound to write about. We've all been busy adjusting to our new schedule, and everyone has adjusted very well.

    I absolutely love being back in the classroom. I feel more fulfilled again, and can enjoy my boys more when I am not with them all day long. My new school is wonderful, and I couldn't ask for better, more respectful students. Although I am usually pretty exhausted at the end of the day, at least I am not at the end of my rope when Mike gets home every evening. I just need to get used to getting up and going early in the morning again!

   I was a little worried about Bryce "punishing" me after daycare each day, like he did last spring. He hasn't done that at all. He has adjusted beautifully, and while he is a little more clingy lately, it's in a good, snuggly way. He has recently discovered a love of looking at books (yay!), and will sit on my lap and look at books for long periods of time every afternoon. I love it. He is starting to identify things in books and loves to "count" and point to letters too. His comprehension has grown so much, and I am just so proud of him! He is just the sweetest.

  We are still working on walking, and he will soon be getting fitted for some little ankle braces that will hopefully help him to feel a little more steady on his feet, while also correcting the way he stands on his feet, and encouraging him to bend his legs a little more. Although I've completely gotten over the comparing-him-to-other-kids, embarrassed-that-he-is-behind thing, I am anxious for him to walk because it will make MY life a lot easier! Carrying a two-year around all the time is getting old.

   Connor is a rock star student and loves going to school all day. The first couple weeks were a little bit like a roller coaster....he still hadn't really made any connections with other kids and was feeling a little sensitive. He has now made lots of friends, and I am noticing that he has gone back to being the popular leader he was last year in school. He is so smart, funny, and upbeat, and I think even other kids recognize that in him.

   Connor's reading has become fairly fluent, and he can zip through most level one and level two readers without any help at all. He self-corrects, reads with expression, and fully comprehends what he is reading. He amazes me every day. I got a report from his teacher about him teaching the class a new word--"gargantuan--it is another word for giant!") While I realize that Mike and I can take a little bit of credit for exposing him to books and resources, he gets most of the credit for learning to read. He has just always been so enthusiastic about learning, he just sort of picked up on the reading thing. I'm just the proudest mom--and seriously, could an English teacher-mother ask for anything more out of her child?!?

    Mike has been doing a great job getting the boys out of the house in the morning, and has been taking care of appointments and things on his own--since his job is more flexible than mine. I am so blessed to have such a supportive and capable man for a husband and father of my children.

    The transition has gone very smoothly, and we're all doing well. Enjoy the (chilly) weekend ahead! I'm looking forward to hanging out with some college friends in good old St. Joe for homecoming weekend!