Sunday, November 1, 2015

Down Syndrome Awareness Month 2015

Last October I started a "professional" Instagram account to support this blog and post my own "memes" to celebrate Down syndrome awareness month.  I've actually found it to be more social as far as dialogue and responses go.  I post over there much more often that I do on this actual blog.  This post includes all 31 pictures/memes that I posted for #DSAM2015. I fell behind a bit on posting these daily. I just couldn't find (nor take) the time to keep up some days. So in some instances I posted more than once to play catch up.  I have listed the following pics by the day on which they were intended.  Thanks to everyone that writes comments, responds, and reposts. I read all the comments, but don't always take the time to respond. Thank you! We may not always agree, but this is a reflection of my life and experiences. My desire with this has always been to advocate for our buddies with special needs, specifically Down syndrome. Early on when Judah was first born and on into his toddler years, I struggled with finding inspiration and encouragement from a dads perspective, so I've gone way outside of my comfort zone to offer my own. Being open about my professional (and sometimes personal) life on social media is not easy for me. But I know there are people (especially dads) out there that struggle to relate to the cute pics of babies and toddlers and mommy play date groups.  Here is more of a glimpse of what I get to do on a daily basis. I love it!

October 1
October is Down syndrome awareness month! I started my blog "Just Listen Harder" 5 years ago to celebrate DS then. I started this Instagram profile to support the blog last October with similar memes to celebrate. One a day. Please repost if you'd like. It's still necessary to spread awareness. The quote for this one comes from the book "My Friend Isabel". It's a great book to share with elementary age kids about Down syndrome.
October 2
It's easy to assume what people with Down syndrome can or can't do. I've found that it's always best to let them show you before you make up your mind about their abilities. "Most people with Down syndrome can't" or "don't" or "won't" should never be part of your vocabulary. They're people first, and their own "abilities" are just as different as yours and mine.
October 3
Inclusion is a very real possibility for students with Down syndrome. My experience, as a parent and (self-contained) teacher, is that it's actually the best possible placement. There are lots of components and variables that have to line up to make it happen effectively though. Thankfully, we have been able to work it out for Judah going on 5 years now. He's made some great friends that really do love being with him, helping him out, and looking out for him. Kids are rad, and Judah's little homie here has been especially great! Inclusion is absolutely good for everyone, not just the student with special needs. When pushing for inclusion for your child, remember that kindness goes a long way. Cheers!
October 4
Verbal communication can be a very difficult obstacle for many people with Down syndrome. I believe it's crucial to promote as many speech opportunities as possible early on. Literacy is the key component to promoting language in all children, it's no different, and possibly more important for children with speech delays. Read to your children daily! Speech and literacy are things we often take for granted and yet our buddies with Down syndrome have to work tirelessly to do it! Give them every opportunity and watch them flourish!
October 5
Just because it seems like a difficult concept to grasp, doesn't mean it has to be. The wonderful thing about students with IEP's is that we have more freedom to personalize their learning. Students with Down syndrome CAN learn the same concepts as their peers. We must modify and/ or accommodate to help them. Judah is in third grade this year. He's currently learning about the plant cycle... just like his classmates.
October 6
When you promote awareness in your community you are helping to create authentic cultural change. It's good for everyone. There are ups and downs in doing so, but working towards it on a daily basis yields consistent growth towards acceptance and inclusion of all people. Keep it up, hold fast, and never lose heart.
 October 7
I never liked to be boxed in. I'm not a "cliche" anything, and no matter how hard you try I will never fit in to a specific idea of the way I'm expected to be in one situation or another. I march to the beat of my own drum. It made sense when my son was born with Down syndrome. Of course I'd be the one to get a rad little different kind of buddy. I figured out early on in his life that these were "my people" and I wanted to pursue a career that allowed me to be with him and his homies everyday. I left a career as a union electrician to teach. I don't look or act like a "teacher", but I am one... and I'm pretty good at what I do. We have fun, and even on the worst days, I'm still stoked to be with my crew, and I usually leave with a big smile on my face and heart. I get to celebrate Down syndrome every single day in and out of the classroom! That's the good stuff right there!
 October 8
This isn't a positive post. It's not supposed to be. Life is hard sometimes. I snapped this picture of my boy wandering around aimlessly during recess the other day. His friends were off playing or doing something else and he was all alone. He had no idea I was out there watching him. I stayed for a good 10 minutes and watched him loaf around all alone. It broke my heart, but it wasn't the first time. One of his IEP goals this year is to initiate play with his peers. We chose that goal because of situations like this. Sometimes the other kids are going to be off doing something else and it will be up to him to ask someone to play with him. Some of the choices we make as parents and educators aren't always the happy or easy route. I'm a realistic dude. I know very well just how hard reality can be. For those of us that expect some kind of academic success and independent life skills for our kids with DS, we must let them experience the harshness of reality. I want my son to be as independent as possible. He's not going to be if we hold his hand through every area of life. He's got to experience loneliness to know what it's like to want a friend. He needs to trip and fall without a hand to hold to know what it's like to get hurt. Reality can be harsh and lonely. Down syndrome is not always cute babies and toddlers. They grow up just like the rest of us and they're not so cute anymore. Prepare them for it as much as you can, when the time is right. Judah will be 10 in a week and a half. He's not a little boy anymore.
 October 9
 October 10
The truth is, this dude would mean the same to me even if he didn't have Down syndrome. He's my only son and we'd be inseparable anyway... at least until he decides he's too cool for me. For now, we throw our hands in the air to celebrate the small things... like getting pizza...
October 11
This dude keeps me young! Most of the time I feel like I'm just living in his Neverland and he's my guide. He constantly reminds me to fly, fight, and crow! We snapped this pic before seeing the new Pan movie today. Forever stoked! Bangarang!
 October 12
When my dude was first born, I was super defensive about it. Over the years I've eased up a whole lot. I've learned (and continue to learn) how to turn negative situations into positive ones. One thing I've learned is that everyone in education is NOT against us. Actually, quite the opposite. Contrary to a lot of the info I was getting 7-10 years ago. I feel like as parents of kids with DS (and special needs) we're encouraged to be aggressive and overbearing about having their needs met and receiving services. Without going into it too much, I'll say this. Kindness goes a long way. Most of the people we have encountered along his educational journey have been fantastic and open. Most of them I have found have actually gone above and beyond for their students (including my son). I'm not sure where things got lost in translation, but use good judgement before making demands for your child. Public education is "free and appropriate", that doesn't necessarily mean it's the "best". Be careful who you push and force, you might find yourself up against a wall. Be kind and thankful for the ones that work and educate your child day in and day out.
 October 13
"Children with Down syndrome will never be able to ride a bike." That's real information that some parents receive. It couldn't be further from the truth. Don't be discouraged by the ignorance of others. If your child is interested in something, I promise you they're going to learn how to do it. Be patient and practice, practice, practice!
 October 14
"People with Down syndrome are always so happy and loving." Let's be real here. They're people first. They have unique personalities just like you and I. One day they're happy, the next they're grumpy. Just like the rest of us. They get excited and upset... just like the rest of us. Awareness will continue to be necessary as long as ignorance continues. Spread the love, but know there are some days when you may not get a hug or a smile!
 October 15
This is a pic of myself with one of my students helping measure and adjust desks to fit for our class. Looking for teachable moments in daily tasks is important. Include them in everything!
October 16
Every year Special Olympics becomes bigger and more fun for both Judah and I. He loves running! This year at the Arizona State Summer Games, I noticed that he finally "got it". He grasped he idea of competition and knew exactly what was going down as he snagged a gold in the 50m dash. The "get it" part was way more fulfilling to me than his actual win. Celebrate Down syndrome and support your local Special Olympics!
 October 17
It can get easy to fall into a rut and become stagnant in the day to day activities. That's kind of true for anyone, but our buddies with Down syndrome NEED constant repetition. So much so, that it can get mundane for the rest of us. I've been working with Judah to ride a skateboard for several years. Not daily, but often. This past year he has picked up on the balance issue and with some gentle pushing, he can roll on his own for short distances. This is just one example of the importance of repetition. Don't stop!
 October 18
Needs no explanation. But, just in case, there has never been a depressing moment about Judah's life. He has Down syndrome. So what. He definitely has had, and will continue to have, specific challenges (medically, academically, cognitively, and developmentally). But it's made all of us much more strong and thick as thieves. Yes, he gets stared at, laughed at, and made fun of sometimes. But people that do things like that don't deserve Judah and can just go kick rocks. Judah is still smiling, and we're always having fun! That smile right there! Those bright eyes! His zeal for life and the joy he brings to others, priceless.
 October 19
My little dude is 10 today! I'm so stoked to have him for a son and wouldn't change it for the world! Our family is better because he is part of it!
 October 20
In conversations about education I often hear concerns about digital technology usurping traditional methods of teaching and learning. I'm a special educator, so I adhere to a balanced approach. I do not believe there is one way to teach, etc. Every student is different and it is up to us to find their potential and bring it out of them. Some of my students do not like to write using traditional methods (pencil/paper). But they love using the stylus at the Promethean board. This is a fantastic adaptation for teaching writing. We practice name recognition, tracing and writing every day. As you can see they have an avatar attached to their name. This helps the ones that don't yet identify letters, etc.
October 21
Back To The Future II came out almost 26 years ago (Nov 22, 1989). I remember it well.  I was in 5th grade and “heavy” into skateboarding.  Everything about the movie was cool to me.  The idea of hover boards and flying cars seemed so far fetched, but possible.  Today is the day Marty McFly travels to the future in part 2 (from a supposed 1985). So technically, he travels 30 years ahead.  The idea of “the future” is exciting to think about, but also a bit scary.  When I think back on the past 26-30 years of my life and where I am now, I would have never guessed I’d be the person I am nor the position in life I have found myself.  I wouldn’t trade it for the world though.  The point is, the future is technically uncertain, but we definitely have the power to determine the kind of person we will be.  We may not always be able to control the events in our life, but we can control how we react to them.  It is our character and integrity that define who we are.  Having a kid with Down syndrome can be exciting and scary sometimes.  As parents, family, friends, educators, professionals, and so on of individuals with Down syndrome it is up to us to change the perception and control the way society reacts to and treats our loved ones.  Our actions will define the future for all people with DS.  26 years ago I never would have dreamed that I’d be watching “Gigawatts 2” (as Judah calls it) with him on this day.  But here we are, and it’s now one of his favorite movies.  We strive everyday to create positive change in our little corner of the world.  That’s a future worth living for.
October 22
October 23
October 24
Inviting classmates to a 10 year old boys' birthday party is not easy. Judah always has great birthday parties. But they're mostly filled with family and close family friends that love Judah and are supportive of our family and situation, etc. This was the first year we invited other kids from his class. Not that we wouldn't have in the past, but he's just never really had a "stand out" sort of friend(s) until this school year. He's always had little girls helping him out, but not really any other little dudes. This year I have noticed 3 boys that consistently look out for, play with, and help Judah. I invited all 3 boys to his party and only one showed up. Judah was thrilled though and told everyone about his friend. This was reason enough to be stoked for Judah. I'm grateful he finally had his own friend that came just to be with him. I'm also always grateful for family and friends that consistently support us and love Judah!
October 25
Serious cake business went down this past week as we had 3 birthdays in my class. This post needs no explanation. We're always having fun. With kids like this, how could you not? 

October 26
What do you do on "crazy hair day" when they don't have any hair? Pull a "Charlie Brown" and paint Jack-O-Lanterns on their heads! I can't promise you won't get an upset phone call from home though...
October 27
One of my favorite professors used to say (and still tells me on occasion) "keep it gonzo"! As educators, we should never be afraid to step out of the box and be a little crazy. This can translate in many different ways. For me, it's never being "too cool" or "grown up" to have fun in the classroom. Our students definitely feed off of our enthusiasm (or lack thereof). This week is "crazy week" at our school. Where else can you get away with being a different kind of goof ball every day? Judah never has a problem hamming it up, so business in the front/party in the back today!
 October 28
These kids are my people! All kids with special needs hold a place in my heart, but those with DS have an extra place. Finding out your baby has DS can be a very "down" experience at first. I've said this many times, my life is completely different than I ever expected it to be, because I have a little boy with DS that came in and just wrecked shop... in a good way. Because I was chosen to be his father, I was given the opportunity to spend all day everyday with other little buddies with DS as a special education teacher. There is nothing "down" about it! We have a blast, and how could any day be absolutely terrible when you get smiles like this constantly? If you're a new parent, hold your head up. There are many challenges that go along with it. Those challenges don't come close to the love and joy though! Stay up!
October 29
When life throws you something unexpected, what do you do? Adapt and overcome! Whining and complaining about situations you cannot control is for the weak. If you're a grown man, a dad especially, your kids depend on you to make smart decisions and take care of them. Especially in tough or unpredictable circumstances. We're all different. We all have different stories and different situations. Live your own. Make your own story with what you're given. In my case, I was given a little boy with Down syndrome. He's 10 now. He still doesn't ride a bike independently. I have always loved riding bikes, and as a family, we go on bike rides all the time. We've run the gamut on bike/trailer combinations for taking him along with us. Now that he's getting older, it was about time to transition to a tandem. The problem is, I never cared for the tandem options out there. I like my rides to have style. A little bit of my own heart and soul. So I built one. I took an old Monark Daisy tandem frame from the 1960's and let the bike speak to me on how it wanted to look. This is the end result and my little dude LOVES it! I didn't plan it, but I finished it just in time for "twin day" at school/work today. No better excuse to bring it to school and ride around. You should have seen the reaction and hordes of kids following us like a parade. Best feeling for my little dude! He was beaming!
October 30
We don't need an excuse to have a good time.
October 31
Thank you all for celebrating Down syndrome with us this month and helping to spread awareness. As long as their are ignorant and negative conceptions about Down syndrome, awareness will continue to be necessary. Keep it going in your corner of the world! Cheers! #downsyndromeawareness #downsyndromeawarenessmonth #dsam2015 #trisomy21 #t21 #specialeducation #inclusion #acceptance #justlistenharder #specialneeds #dsawareness #dsawarenessmonth #theluckyfew

1 comment:

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