Friday, October 31, 2014

Down Syndrome Awareness Month 2014 part 2.

Here is the second installment I did for October's #DSAM2014 Instagram posts.  As with the first set of posts, I have gone back through the explanations to correct some grammar errors and add additional thoughts.  To see the raw/uncut versions, you'll have to head over to Instagram for that.  Thanks again to all of you that we have connected with on Instagram!  If you're not part of the conversation over there yet, please do so by looking us up at @justlistenharder .

OCTOBER 16

I was naturally an impatient person, always hurried and rushing from one thing to the next. I am still that person, but I have learned patience over the past nine years. Judah rarely allows me to be in a hurry. We've learned, for the most part, to adjust our schedules accordingly to make up for the time it takes to move him along. We call it "dropping anchor". If we're legitimately in a hurry, you can bet Judah will "drop anchor" and remind us to slow down. He doesn’t do it in a defiant manner either; it’s just who he is.  I've been complemented on my patience numerous times, and I always snicker a little in my mind recalling how I use to be. Judah does things at his own pace. I've also found this to be a common thread amongst the individuals with Down syndrome that I get to teach and coach. It is probably the most frustrating, yet the most important lesson that I have learned and continue to accept. If you can identify with this, and perhaps just learning about adapting your life to someone with Down syndrome, remember to slow down, don't be in such a hurry. They're likely not being disobedient, so it's key to adjust to their time limit so as not to frustrate the situation even worse. It's a great lesson that we can all benefit from! Have patience.
OCTOBER 17

Yesterday we received Judah's first report card this school year. It was positive, of course, except for this little hiccup here.  As a teacher, I would never write just one comment.  If I did, it wouldn’t be negative.  If negative comments must be listed on a report card, then I would sandwich it with positive comments.  It’s just poor practice to leave one blaring negative comment.  For those unaware, Judah is completely included, which means he goes to specials (PE, Music, Library, and Art) with his general education class and without a paraprofessional to assist him. He can definitely be disruptive, but he thrives and is well liked in most of his classes and he has some truly amazing teachers. So what's the difference here? Attitude. Kids of all abilities react to their environment. If they are wanted, respected, and liked, they will likely produce positive results. If they are unwanted, disrespected, and not liked, they can feel that negative energy and will likely produce negative results. Individuals with Down syndrome will have people they encounter in school and life that do not want them around and will have little patience in working with or tolerating them. It's important to advocate and provide as much support as possible. I've seen Judah win over some people I would have never expected. However, sometimes it doesn't matter what you do. In our case I changed my career, became a special education teacher, work at Judah’s school, collaborate with and support his teachers, and there are still be some that refuse to open their hearts and minds to him. It's a tough lesson, and one that hurts as a parent, but it’s necessary because that’s life sometimes.  The hard truth: not everyone is going to love your little bundle of joy.
OCTOBER 18

Parents of children with Down syndrome have, or will learn, the excitement that comes when their child meets new goals. In many ways, children with DS must work harder and longer to achieve the things we may otherwise take for granted. Such as breastfeeding, crawling, walking, eating independently, talking, reading, writing, and so on. Every child is different and each story is unique. Judah never crawled. We were so worried and thought he'd never walk either. He did learn to walk, of course, and it was a huge celebration for us. He learned to talk too, and now he won't stop! We're still growing with Judah, and we continue to celebrate new milestones. Tomorrow he turns 9! He reminded us today because we're having his party. He keeps telling us: "My birthday! Nine!" Hold your head up new parents! They'll get there! 
OCTOBER 19

Nine years ago today my little "lost boy" was born. In some ways, prior to Judah's birth feels like another lifetime because of all the changes it brought. We celebrated his birthday last night with a costume party. As I was looking around I realized that everyone there (besides family) came into our lives after Judah was born. We moved from my hometown (Fort Worth, Texas) to my wife's hometown (Yuma. Arizona) when Judah was about 3 months old. It was a new start, a new life, and a new journey. I miss Texas. I miss my family and friends there, but I know I made the best decision for my family by moving to Arizona. So much has changed for us, including my career as a special educator. Last night Judah was on top of his world, surrounded by a handful of people that have shown love to him and my family. Judah has a vivid imagination where he lives in a world filled with Peter Pan, super heroes, and all things Ninja Turtles. Happy birthday Judah Pan! May you forever be a lost boy! Bangarang!
OCTOBER 20

Quote by Dr. Brian G. Skotko, author of Fasten Your Seatbelt: A Crash Course on Down syndrome for Brothers and Sisters. Dr. Skotko has a younger sister with Down syndrome and provides great insight, experience, and knowledge as a sibling. He says:  “growing up, Down syndrome was always part of my family but never the centerpiece, I think parents come to realize they just need to sometimes be a parent as if Down syndrome didn’t exist.” I won't pretend to know what it's like to be a sibling, but as a daddy, I can say that I recognize the unique situation we're in with our two daughters (one older, and one younger than Judah). Our baby, Aveline, seen here with Judah about 6 years ago, doesn't even know what life is like without having a brother with Down syndrome. It's been kind of what I imagine having twins is like. They're two years apart and for a couple years there they were very close developmentally. We've had Judah repeat Kindergarten and now first grade, so they're actually in the same class together now. Our oldest daughter, Karis, is 2 years older than Judah. She has always been very precocious and mature for her age. Both girls are very sweet, kind natured, and quick to help when needed. We've tried to make sure we don't put extra expectations on them because of Judah. As a father, I make sure my girls feel beautiful, wanted, loved, and special. I take them on daddy/daughter dates and try to provide experiences with them apart from their brother, just as I would if he didn't have Down syndrome.
OCTOBER 21

I realize this post looks confusing.  It’s Judah watching Black Sabbath live.  If you’re a Sabbath fan, then you should recognize the quote being the first line from their self-titled song.  The wonder in a child’s eyes is amazing!  Judah’s favorite band is Black Sabbath, hands down.  He calls them “Iron Man Songs” for obvious reasons.  Even if you’re only a mild Sabbath fan, you probably understand that connection.  One of my friends hooked us up with tickets to see the almighty Sabbath a little over a year ago.  It was a dream come true for Judah and I.  I took this shot to capture the moment as best I could through his eyes during one of his favorite songs, “Black Sabbath”.  As you can see, we had some pretty amazing seats in a suite.  We traveled about 3 hours after work/school on a Friday so we arrived a bit late, during their first song.  We had to walk through a series of corridors and security checkpoints before we got to the suite.  While walking, we could hear them playing.  The look of amazement and surprise on Judah’s face was priceless.  As we sat down to this view here, his eyes were in full throttle wonderment!  These songs he’s been listening to non-stop for years blared at full volume right in front of him in real life, and he made the connection!  He knew exactly what was going on! As the major riffing of this song broke out, he immediately began head banging and dancing in his seat.  It was my first time to see Sabbath as well, so it was fantastic and surreal to share the experience with my boy.  I chose a lyric from this song because it perfectly fits this moment for Judah.  This post really has nothing more to do with Down syndrome, than it does just living life with my favorite boy experiencing rad moments as father and son. “We’re more alike than different.”
OCTOBER 22

Awareness, advocacy, and inclusion are still necessary. Our kids with Down syndrome, and other special needs continue to get made fun of, picked on, and called names. I wish I could say they didn't, but they do. I see it frequently as a teacher and as a parent. This is usually why many parents, with children in a self-contained class, choose NOT to have their child "included". The safety of the special ed room gives them peace of mind. I understand that. I go above and beyond to promote awareness and inclusion at our school. Not just me, but much of the staff as well, including our principal. So much so, that our school has become a leader and an example, in our county, that other schools look to for inclusive practices. Even so, we still have to deal with negative behavior directed at students with special needs. Kids with Down syndrome are more like any other child than different in this respect. They know when they're being made fun of, they don't like it, it hurts their feelings, and they may get angry and act out because of it. It's happened to Judah, and I'm at the same school with him. Though it's rare, not even I can prevent it sometimes. What I have been able to do is turn many negative situations into positive ones. Just last week, in fact, I had to deal with a boy that was making fun of some of our students. I brought him to my class, talked to him for a few minutes then let him spend time with my students. He told me as he returned to his general ed class: "Thank you Mr. Norris! I'm sorry for the things I said, and I feel much better after being in your class." To parents of children with special needs: your child will probably get picked on and be the butt of a cruel joke. It's likely to happen at some point in their life. Be aware, be prepared, and as much as possible, keep your own emotions under control. Try to use the situation for good, turn it around, and advocate on behalf of the negative behavior. You just may win over a new advocate and friend. For everyone else, please think before you open your mouth. Think before you laugh at the comedian who uses our loved ones as the butt of their jokes.
OCTOBER 23

Many of us have experienced the "I'm sorry!" comments when we first tell someone we have a child with Down syndrome.  It happens more often when they're babies, but I still get it on occasion nine years into this. My wife and I would get fairly offended in the beginning, and some of you new parents may also be experiencing the same thing. We also received comments like "I'll be praying for a healing", and "how sad for you". When someone offers condolences, it's most likely because they are giving support the best way they know how, even if the comments are ignorant.  I’d bet most of us start this journey with a bit of ignorance ourselves. This is another reason why awareness is still necessary. It's a perfect time to advocate and explain why there is nothing to be sorry or sad about. There are also many health concerns that come with Down syndrome. Remind others that Down syndrome is a chromosomal issue, and not one that can be healed or corrected.  The various medical problems that come with the Down syndrome package are the things that need prayer. Judah had a hole in his heart, extra fluid in his kidneys, plus eye and ear issues. We were told by age nine most of the medical stuff would be resolved. The doctors were right. Judah's heart and kidney concerns healed over time. He's had five eye surgeries, and numerous ear problems, which are the only thing left we really have to deal with. Earlier this year, on March 21 (World Down Syndrome Day) there was a newer mom on TV plugging a spot for Down syndrome. It was depressing, sad, and quite the opposite of what we strive for. The news anchor said "those affected by this disease" and the mom was very pouty in the way she talked. She looked and spoke as if she was grasping for sympathy, acting like life was difficult and challenging now that the kid with Down syndrome arrived. I couldn't disagree more! As for my family and I, we don't want sympathy! We never did! We just want respect! That's the way we live our lives, and would encourage others to find their motivation to do the same.
OCTOBER 24

Awareness is still necessary when our society chooses termination over life. The statistics are staggering: An estimated 92 percent of all women who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancies, according to research reviewed by Dr. Brian Skotko, a pediatric geneticist at Children's Hospital Boston. Only about 1/10 children, with Down syndrome get a shot at life. There's even one guy (gaining lots of attention lately) claiming that it's immoral NOT to abort a baby with Down syndrome. Instead of ranting about pro-life/pro-choice I will choose to shed some positive light on the situation. If you're a potential new mother, please consider the benefits of keeping your child with Down syndrome. My boy is only nine years old and having him has changed my life for the better in more ways than I could possibly count. Life altering ways! I am a better human being because Judah is my son. Please do some research and read the stories about those of us that have been changed because we were blessed to have a child with Down syndrome in our lives. There are challenges, and nothing is certain, but it's worth it! If you're a parent/loved one/educator/therapist/doctor/friend of someone with Down syndrome, please share the love and advocate on behalf of bringing awareness, acceptance, and inclusion. Please choose life and encourage others to do the same!
OCTOBER 25

"I'm nine years old, and like other boys my age, I like Ninja Turtles, pizza, and music. Some of my favorite bands are The Ramones, Dropkick Murphys, Gaslight Anthem, Volbeat, Beastie Boys, and Black Sabbath. I like to watch action movies and play with action figures. Sometimes I like to ride my skateboard, wrestle, and play basketball. I like to go for rides in 'cool cars' and my dad’s truck. I also happen to have Down syndrome.  NDSS.ORG has an ongoing inclusion and acceptance campaign for schools called "Get To Know Me". I've been using the handouts, lesson plan, and ideas at our school. Get to know someone in your life with Down syndrome! If you have someone in your life already, they need you to advocate for them. Awareness is still needed because we live in a society that continues to put a label before the person. We still live in a society that uses derogatory slang in everyday talk. Judah is not "retarded". He has an "intellectual disability" that comes with having Down syndrome. My kid is rad! I'm super proud of the boy he is and I wouldn't trade him for anything!
OCTOBER 26

As a special education teacher I adopted the above slogan about two years ago to sum up my goals as an educator. I am a parent first, so I approach teaching from that perspective. I am an advocate for all people with special needs and I use my career to do so. I believe all students can benefit from even the smallest amount of inclusion. In doing so, I strive to always do what's best for the student first. That is not always convenient or easily adaptable, but just about anything is possible with the right team and proper support. For the most part, I have that in place. I am grateful to work in an environment that helps cultivate awareness, inclusion, and acceptance. I'm pushy, no doubt, but I've been met with very little resistance and I've pretty much always had full cooperation. That is a chemistry that CAN be duplicated! The mentality of: "if only I could teach there, if only my kid could go to that school, if we only lived in that city" does not have to be the case. There are many wonderful educators all over more than willing to cooperate. Sometimes it just takes one person to be the catalyst, one person to make small changes that turn into big things over time. Wherever you're at, as a parent or an educator, be open to change, new ideas, and practices. Don't get caught up in one way being the best or only way to do things. There should always be a balance of things that work together. Inclusion is for everyone, but it will look and play out differently for each student. Before you begin to complain about the way things should or could be, examine yourself first and figure out what you could do to make it happen in your corner of the world. Every child and every school needs cooperative parents and educators to come together for inclusion to work. Don't complain, work towards change. Teach. Advocate. Include.
OCTOBER 27

This picture was taken two years ago. It perfectly captures the joy and love we have in our family. Some dad’s dip out on their kids, and some moms choose to terminate. We chose to keep and stick around. Because of that, we are better people than we would be without. We're definitely different, not perfect, and we have our own issues, just like any other family that stays together. Having a kid with Down syndrome has helped to make all of us better human beings. Not better than others, but better us. Life is sweeter when you have to slow down, appreciate what you have, take your time getting there, and celebrate the small things. I'm a better husband, better daddy, better teacher, better coach, and better friend than I was or would be because I have a boy with Down syndrome. 





OCTOBER 28

Regression and stagnancy in people with Down syndrome is a very real issue that we have to face as parents and educators. Sometimes it's preventable and other times it's inevitable. I certainly don't have the secret answer to this. I have seen both in my son and my students. However, I can say that a sure way to see regression or stagnancy is to stop moving forward. It sounds like common sense, but our own actions as parents and educators prove otherwise. Sometimes progression doesn't seem to come quick enough and out of frustration it becomes easier for us to lean on comfortable habits and sure abilities. I have found that setting high, yet reasonable, expectations is the best route. When a person is challenged appropriately, the payoff is huge and worth the effort. In education our children have an Individualized Education Program (IEP). Basically, a team of professionals and the parent(s) meet annually to decide appropriate goals in different academic areas to be addressed in the learning environment and hopefully supported outside that setting as well. Those goals are reached through objectives, which can be interpreted as "baby steps" the student takes to meet their goals. Sometimes I welcome a new student from a different program that has stagnant, comfortable goals written. As a parent I'm annoyed by this, as an educator, I can understand it. My point is, gently push your child/student toward success. Provide as much opportunity as you can to allow them to succeed. If they fail in the attempt, at least they were given a chance and tried. If it doesn't work out, move on to something else. I believe history has shown us that people with Down syndrome thrive best in an environment where they are challenged, supported, loved, and given an opportunity to succeed. Just look at the life expectancy compared to 30 years ago! It's pretty much doubled! Why? Because our society has changed, education has changed, we have been moving forward and pushing them all along the way. Don't set limits, set expectations! Let them keep on truckin'!
OCTOBER 29

Judah didn't show much interest in sports or physical activity until he attended his first Young Athletes Day. That was in April 2013. This photo was taken then. There was something about the energy and excitement in the air that day. It pulled a different kid out of my boy. I had never seen him so stoked to be running and playing outside. I am a huge advocate for Special Olympics and it all started on this day! Since then Judah has gone on to compete in track and field events, help me coach the adults in basketball, and skateboard on his own time. He's also taken on an interest in football. He will literally toss the football back and forth with me until I stop. We've played catch for hours on the beach where I can use it to encourage him to get in the water. One of my favorite things about playing catch with him is when one of us misses the toss, he always says: "Da-ee! Get it!” Let your child surprise you! Do some research, ask around, and find out what programs Special Olympics have to offer in your area. If your child is under eight years old, Young Athletes is a perfect introduction. It's very similar to adaptive PE. If your kid is in my class, well then they participate in Young Athletes weekly! 
OCTOBER 30

Today is “twin day” at work/school.  It’s easy for Judah and I to match because we dress alike anyway.  I’m really into the “More Alike Than Different” campaign and I enjoy showcasing our “sameness” during twin day.  However, the main point I want to emphasize is comparisons within the Down syndrome community.  Comparing one child with Down syndrome to another child with Down syndrome is a dangerous trap; it sets our kids up for failure and causes disappointment.  My wife and I recognized it early on and have made great efforts to not compare Judah to other kids with Down syndrome.  It was easy to do when he was a baby/toddler because it was all so new to us and we wanted to see progression.  We were settling into a life, raising a child with Down syndrome, we hadn’t really thought about before.  Even as a teacher it’s easy to do.  I have students with Down syndrome that are at several different cognitive, developmental, and academic levels.  The truth is that there is a bit of intellectual disability that comes with the Down syndrome package.  We all know that.  While our kids with Down syndrome share many characteristics, the amount of intellectual disability and how it translates through the individual is just as unique as they are.  No child with Down syndrome is exactly alike.  That sounds like common sense, but sometimes our actions and/or thoughts prove otherwise. We stress for others to treat our children as people first, before the label; but we compare the same label amongst our own.  Don’t be discouraged if your child with Down syndrome is not at the same levels as their peers with Down syndrome.  On the flipside, be mindful of others, whom have children with Down syndrome that may be at a lower cognitive, developmental, intellectual, and/or academic level than your child.  Do your best as a parent, encourage those that work with your kid to do their best, and expect the best from your child.  Watch them blossom at their own rate. That’s all we can do. Celebrate success and try not to compare!  We may be more alike, but even amongst our own we are still different. 

*An additional note: Judah has a Ninja Turtle in hand 24/7.  It's a stimulation for him.  He kind of shakes/rattles it.  When he's really stimulated, he'll kind of stare at it and shake it vigorously making a sound effect with his mouth (a sort of crunching sound).  To keep our twin outfit legit, I carried a Ninja Turtle around and shook it all day too.  As you can see in this picture.
OCTOBER 31

October is a rad month to celebrate and advocate for Down syndrome!  I've had fun creating these daily posts and meeting many new people, albeit mostly by means of digital technology.  Thanks to everyone that liked, commented, shared, and reposted!  Thanks to those of you that have opened up about your own experiences.  I will not be posting daily after today, but will do so frequently enough.  After October I'll write about my class, special education, other diagnosis and so on as I feel inspired.  My next blog post will be a lengthy write up about inclusive practices based on my own experiences as a parent and teacher.  I hope it will aid in connecting parents and educators with better understanding from both sides.  Happy Halloween from my family to yours! 

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