Wednesday, October 15, 2014

Down Syndrome Awareness Month 2014 part 1.

This post includes the first 15 installments of #DSAM2014 from the Just Listen Harder Instagram.  My goal for this month has been to create a daily inspirational picture with an encouraging quote about Down syndrome to inspire awareness and acceptance.  Below I have included each daily post with the explanation.  As I went back and re-read these, I noticed grammar errors, but that is the beauty of writing things freestyle and not planning it out.  It comes out raw and uncut.  I went through each post and cleaned them up or added to them a little for the blog though.  Please feel free to repost and reuse in a positive way.  If you do, just give us credit.  I'll post the next 16 pictures at the end of the month.  Thanks and enjoy!


OCTOBER 1

I started this blog in honor of Down Syndrome Awareness Month 2011.  It’s been three years, and for DSAM 2014 I decided to start an Instagram to support the blog. Over the past three years I have been documenting my adventures, success, trials, and failures accordingly. Initially I started the blog as a means to document my own history and share with close family and friends only. Over time, I realized that I could use my experiences as a way to advocate and help bring awareness. Nine years ago when I became a new father to a baby boy with Down syndrome there was very little manly support. So I'm doing my best at putting myself aside and opening up to other men that find themselves on a similar journey. Additionally, I've earned some grandeur in the educational field along the way and wish to open up discussion and bridge gaps between parents and educators. Please feel free to reach out to me on here, through Instagram, or email. Also, please share these posts with people in your life that might benefit from them. I'm not interested in making myself or my son Insta-famous, I just wish to offer my experiences and advice to those who could use it. I'm trying my best to wrap some of that up with quick sayings on pictures of my boy, my students, and athletes. Every picture I use is my own; either taken by me, or someone else in my life. Credit is given accordingly.

OCTOBER 2
My little dude has been in a general education class since day one.  It’s just good for everyone involved.  When he’s been absent, this is the kind of welcome he gets when he returns.  People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways. – See more at ndss.org.

OCTOBER 3

Our little buddies are not “afflicted” with Down syndrome.  It’s not an infection nor is it contagious.  Down syndrome occurs when an individual has a full of partial extra copy of chromosome 21.  This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.  – See more at ndss.org.

OCTOBER 4
Having a child with Down syndrome is not the end of the world.  We were often told or read: “take time to mourn for the child you didn’t have”.  Personally, I never liked this kind of advice.  It may work for some people, but I’m better off facing reality and getting on with life.  This is the child we were given and he is an amazing little boy.  The doctor that circumcised him told us: “he will not be a rocket scientist, but he will be a good boy, a loving boy”.  That’s real talk.  Sometimes that’s just what we need, a dose of reality.  Our lives have changed drastically, for the better, with this dude around and I wouldn’t trade him for anything!

OCTOBER 5
This post is for all the siblings of children with Down syndrome!  When it comes to attention, it may appear that the siblings take a back seat.  I’ve been asked before why I don’t post as much about my beautiful daughters.  The answer is simple, they don’t need it; and honestly, if my boy didn’t have Down syndrome, I probably wouldn’t post much about him either.  Unfortunately we still live in a society that picks on, makes fun of, and bullies those that are different and/or weaker or cannot stand up for themselves.  Obviously people with Down syndrome are targets for cruelty.  As long as advocacy is needed, I will be at the forefront.  My girl’s, Judah’s sisters, are amazing!  They are kind, loving, patient, and incredibly intelligent.  They have their own voice, and they use it!  I love them just as much as Judah, and I’m equally proud.  They are self-motivated, and high achievers.  Judah still needs to be pushed, encouraged, and stood up for.  My girls are partially who they are because they have a brother with Down syndrome.  That’s an unavoidable fact that I believe helps them to be better people.  They are already advocates for Judah.  They are quick to speak up and stand up for him when needed.

OCTOBER 6
Advocating for Down syndrome at its most basic level is just bringing awareness and respect.  In some places that’s needed; in others it’s time to move past that.  Where do we go after awareness and respect are achieved?  I believe we should focus on the areas that put the person first, not the label or disability.  A life that encourages independence, inclusion in school, workforce stability, living arrangements, financial security, insurance, a valued and contributing member of society, and so on.  Judah is just about to turn nine on the 19th.  We’re currently at the independence and inclusion in (and out) of school stage of his life.  He goes everywhere with me and is included in most aspects of my life.  Sometimes I play hardcore music with my friends.  I yell words into a microphone.  Judah loves music almost as much as I do.  As he grows, it’s become a natural progression for him to join me at punk and hardcore shows.  This particular night was special and the magic happened to be captured.  This was never about “hey look at my kid with Down syndrome”.  It was just about a daddy sharing a moment with his son.  That’s real.

OCTOBER 7
This is one of the basketball players I coach for Special Olympics.  He’s showing off his gold medal from a tournament earlier this year.  My experience with Special Olympics began almost two years ago.  It started with the Young Athletes program and has expanded to coaching basketball for adults, and having Judah compete in track and field at the summer games.  Special Olympics are the poster organization for advocacy and awareness on many levels.  I have integrated the Young Athletes curriculum into my class on a weekly basis.  If you have a little guy, YA are a perfect introduction to Special Olympics.  I can’t say enough positive things about it.  I encourage you to seek it out for yourself and your child, little or grown.  To get a better idea, look up your local programs and browse through this blog to see some past posts about our adventures with Special Olympics.

OCTOBER 8
I’ve never been too concerned about fitting in.  That’s kind of a high school mentality anyway.  When we had Judah it just kind of made sense.  Through all the emotions and feelings I didn’t know I had, deep down I was stoked to have a kid with Down syndrome.  It forever sealed my “out of step” place in society.  He was even born with a mohawk!  That was nine years ago when mohawks were still punk.  When the dust settled after he was born that little mohawk stood like a flag of opposition and I became proud of it.  There’s an endless picture supply of babies and toddlers with DS.  Maybe because all the new families are coming to terms with their little outsider, I’m not sure.  Who doesn’t like baby pictures though?  At any rate, there’s a lack of pictures, and stories about older kids, teenagers, and adults.  I think it’s because as families grow along with their child real life sets in and the “Down syndrome-ness” wears off.  I can speak for my family and I; Judah has just grown to be a member of our family first, and the kid with Down syndrome second.  Everyone has their own story and deals with life in different ways.  I can’t say that I necessarily wanted to “stand out”, and I wasn’t the type that was really ever picked on either, but I too never fit in.  Judah was perfectly matched to my wife and I.  He has helped us to stand out in life and make some big positive changes personally, professionally, and socially.  Cheers to all those that march to the beat of their own drum and understand that differences help make the world a better place.

OCTOBER 9
As a father, it’s always great to see other dads advocating for their kids with Down syndrome.  A man’s voice and influence in any child’s life is greatly needed; but even that much more for those who can’t speak for themselves yet.  If you’re the father of a child with Down syndrome, or other special need, they need you!  They need your voice, your strength, your reinforcement, and encouragement.  Do what you need to in dealing with your emotions, uncertainty, and questions.  Please don’t abandon your child physically or emotionally.  We may not know each other, and could be worlds apart.  I will make myself available to listen, talk, and help you sort things out.  Man up and be a daddy, not just a supplier!  Cheers to all y’all dads of kids with DS and other special needs that we have connected with on some level!

OCTOBER 10
As a self-contained special education teacher, I am faced with the sheltering aspect of special needs often.  As a parent, it is a natural reaction to shelter and hover over any child, especially those with special needs.  I’ve talked to a number of parents that do not want their child included because they are afraid of ridicule and exclusion.  They like the safe and nurturing environment the special ed class provides.  I get that!  The fact is, though, they will get made fun of, and they will be left out.  That’s part of life.  It sucks, and it can be tough to deal with, but doesn’t every child have to face that at some point?  Yes, kids with Down syndrome (and other special needs, for that matter) can become targets for bullies.  However, my experience is that the positive far outweighs the negative!  All kids benefit form children with Down syndrome being involved in daily life, in and out of school.  I would encourage you not to be afraid to let your child live outside of the bubbles we create for them.  This includes kids without DS!  Encourage all children to reach out and share.  Here we have Judah with his little homie Oliver.  Oliver could care less that Judah has DS, they’re just kicking it and playing Ninja Turtles anyway.  That’s life!

OCTOBER 11
Conformity in education is easier for the educator, not the learner. There are many different learning styles. At this point, that should go without saying. Even in a general education classroom, the students are likely to learn several different ways. I believe the teacher should adapt to the students, not the other way around. Assimilation of learning works with self-motivated high achievers. What do you do with the rest? What do you do when a kid with Down syndrome shows up on your roster? I know first hand that people with DS learn just as differently as other students because they too are a person first with unique qualities. That's very important to remember within education. Don't assume that all kids with DS are the same or will conform over time to their general education peers. They may in some ways, but they still have special needs that must be addressed. Here we have Judah spelling his first and last name independently using magnet letters on a white board. He's almost nine and still refuses to write. Sure, he'll hold a pencil with a functional grasp and make somewhat purposeful marks, but the kid just will not write. This could become extremely frustrating for any teacher. Therefore, we have had to adapt to his learning style. We came to a crossroad of making the choice to either force him to write or introduce other methods so he could spend more time learning to read, and spell. He learns the same spelling words and sight words as his general education class, just not as many at the same time. Eventually we'll introduce him to typing on a device, but this is where we're at currently and it looks vastly different from the way other students learn. Special education is just good teaching, what we call pedagogy. There are many different ways to teach and learn. One way is not necessarily better than another. As a parent navigating your child through school, keep this in mind and be open to different ways of learning. As an educator, don't be afraid of the students that learn differently than the rest. Most of the time it's not difficult to adapt and/or modify in some ways, but it does take some thought and creativity. You just might find that some of those behavior issues you've been having are a result of frustration because the student doesn't learn the same way as the rest.

OCTOBER 12
This is not my quote, but I quickly adopted it several years ago. I snagged it from a magazine we get here called Raising Special Kids Arizona. This mindset translates to every area of life. When we say, think, or act like our children with Down syndrome can't do something, we are disabling them already without even giving them a chance. Just like anyone else, there are going to be some things they cannot do. At least give them a shot at it though and don't cut them short! Let them surprise you! They will! I've been working to teach Judah how to ride a skateboard for a few years. It's a natural progression for me because I've been a skater since about his age; however, much less so in recent years. He will stand on the board with assistance, but he loves to bomb driveways and slants like this on his own, sitting down. Skate or die! Do or try!

OCTOBER 13
MYTH: People with Down syndrome are always happy.

TRUTH: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior. -NDSS.ORG

This should go without saying, but it does not. Many people have the best of intentions even with ignorant remarks like this. I think a better way of approaching this would be to say that people with Down syndrome have a great way of bringing joy to others. Those with Down syndrome are not without the full spectrum of human emotions. Just this morning, Judah threw a huge fit because I wouldn't let him watch TV first thing. He pouted for about an hour and a half. So no, people with Down syndrome are NOT always happy.

OCTOBER 14
I have a unique perspective as a father, and as a teacher.  Early on, I struggled to find info from a man’s perspective.  Ladies, you've been doing a fantastic job advocating for those with Down syndrome.  There is an abundant supply of feminine perspective, but I am masculine and I always struggled to find info and support from other fathers, and men.

However, more important than that, was the lack of a teacher's perspective.  Early on, it seemed like most of the info I received, as a parent, about the "special education maze" was negative.  Especially toward teachers and educators.  I felt encouraged to be aggressive and pushy.  As a teacher, I couldn't disagree more.  I've been "climbing mountains" to share my experiences and "building bridges" to fill those negative gaps between parents and educators.  I obviously do not speak for all of us, but these are my experiences and I would encourage those of you getting ready to navigate your educational options to read my blog with an open mind and hopefully take away some positive ideas you can put into action.  I am currently writing a fairly extensive post about inclusive practices I think will be beneficial. 

When Judah was born I, like 90% of us, had no clue what I was in for.  There are a lot of really good resources about Down syndrome, and there's still some that are not so great.  I have chosen to focus on the good stuff, overcome the bad, and encourage others along the way.


OCTOBER 15
The name of my blog fully relates to everything I do as a father and teacher of kids with Down syndrome (and other special needs).  I feel like it should be explained sometimes, as new readers come in and obviously with this Instagram feed now. Just Listen Harder was inspired from one of my last courses in education before I started my student teaching.  There was a young lady, with Down syndrome, in her late 20's that spoke to our class.  She was very well spoken and talked to us about leading a life full of educational experiences and what adulthood for someone with Down syndrome looks like.  While taking questions, I asked her "As a father of a child with Down syndrome what is the best advice you can give me?" She replied: "Just listen.  If you don't understand what he's saying just listen harder."


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