Wednesday, October 3, 2012

School days.

The school year is in full swing.  My favorite time of the year is here.  Fall and on into winter.  Unfortunately, in the desert southwest, we don't get much of either.  Just really nice weather.  I'll take it.  It beats the heat.  I do miss the change of seasons from back home in Texas though.  I try to bring the seasons to my classroom through bulletin board art.  I call it "teacher graffiti".  Last school year I posted some pictures of the bulletin boards I created.    Here is the one from August/September:


This is the one I just finished last week for October.  It's my favorite so far.





Here is Judah with the class iPad, chilling in the loft, probably after school playing angry birds. 


Judah is painting the letter J in his mainstream class.


Playground time.  Judah looks like he's reaching for a hug, but actually he was pretending to be Iron Man.


Iron Man again... on the swings.


This month is Down Syndrome Awareness month.  It also marks one year for this blog.  So cheers to all the little buddies, their families, friends, loved ones, teachers, therapists, doctors, and so on that all pitch in to give all of our buddies a chance at life.  Advocate for yours and I'll continue to do so for mine!

Friday, August 3, 2012

Oh back to school...

School starts back up next week.  I've been setting up my classroom, and attending meetings and trainings since last Thursday.  I'm stoked to get back to my teaching career.  I fell back on my previous job as an electrician during the summer.  I've done electrical construction work on and off for the past 10 years.  I'm thankful to have it to fall back on when needed, but I don't care who you are or how long you've worked in the heat... you never get used to it.  Needless to say, I couldn't wait to get back to my class.




Today at one of my trainings I overheard some complaining about the temperature in the training room and about having to come back to work, etc.  I can't relate.  Teaching should be fun.  If it stops being fun for me, I'm going to do something else or drastically change the way I teach to keep it fun.  There's nothing like going back to manual labor to put things in perspective.  I don't really feel like I needed perspective, but going from teaching to construction is drastic and I worked hard to keep from complaining.  I was happy to be sitting in the AC today, even if it was only set at 80 degrees.  It sure beats digging a trench or pulling wire outside in 110 degree heat.


So I got my class list this week.  I have 6 students to start the year off with and they're all boys.  Only two have Down syndrome and I had both of them last year.

I am getting a couple of boys that are diagnosed on the Autism spectrum.  I'm looking forward to the challenge and learning experience for myself.

Despite working construction this summer, my family and I did manage to squeeze in a few camping trips to the mountains, lake, and the beach.  We all love to camp, but I must say that Judah's way with words is the best when it comes to camping.  His favorite saying is "SEEEEP BAGS!"

Judah and his little sister Aveline.

He also adds the "pop" sound to any word that ends with "p".  I.e. "camPOP" for camp.  I love it.  He's a blast.  He also loves to swim... in a pool.  But like me... not so much in large bodies of water.  We both just stick to the beach...


My little sister Misty and I.
He calls it "siimming", but doesn't do anything but play and dig in the sand.  That's my boy!  I'm going to start posting more videos too... and pictures.  I'm also on Instagram, @just_jarrod.  Cheers!




Judah and his sisters.




Wednesday, May 30, 2012

Summertime.

Today was the last day of school for my son Judah and I.  This was my first year teaching and his first year of public school.  I've been thinking about this school year a lot today.  I honestly didn't expect it to go by as fast as it did.  There's so much more I wanted to do.  But, I have learned some invaluable lessons and my little guy has shown us that he can't be boxed in.

Judah's first IEP meeting was in October.  One of his goals was to be able to guide a computer mouse and/or track pad.  I recall at the beginning of the school year how frustrated he would get with "hand-over-hand" while at the computer.  It only took a short while before he grasped the concept and took off with it!  Eventually I'll get around to posting a video of what he can do at a computer.  I'm not kidding, I promise most of you would be surprised.  I'm amazed at what he can do.  He can boot up and shut down a computer.  He doesn't read, but he recognizes familiar words and knows how to navigate through "bookmarks" on the internet.  He clicks on his favorite educational sites (and Angry Birds) and just goes to town.

I'm also happy to say that Judah can identify each uppercase letter, except for "K", for which he only knows the sound.  He doesn't like to write or color, but he can count to 10 independently.  He only had a handful of "accidents" in his pants this year.  He can navigate the whole school without supervision.  He's also made a ton of friends and maybe even a few enemies since we've had to deal with a couple bully issues.

We've been super happy with our decision to place Judah in a mainstream classroom.  He's made so much progress  and the results speak for themselves.  He graduated yesterday, and little does he know, he'll be going back.  My wife and I decided that because he'll be in school until his 22nd birthday there's no rush to hurry him along through grade school.  So he's going to repeat kindergarten next school year.  His teacher enthusiastically agreed to have him back and my class is still next to his.  We chose this route because kinder is a great environment for him academically, socially, and developmentally.  Also, I'm not really ready to let him out of my sight.  I'm very protective, and even with me shielding him he's managed to find himself on the losing end of bullying.  So our decision gives me another school year to have him close to me and protected.

On to my class.  I don't even know where to start.  I can say that I am a parent and an advocate first.  It is with that mindset that I base my teaching.  I've stood my ground and stuck to my guns this year.  I've had great support from my paraprofessionals, principal and other supervisors, staff and teachers.  I've butted heads with parents, been involved with local authorities, etc.  Through it all I've held my head up with confidence and never backed down.  I had no idea that in my first year I would have to deal with some major issues concerning my students.  I wish I could do so much more.  The most difficult thing for me to deal with has been my students' burdens.  I 'm still unsure how to separate myself in that regard or even if I should.  I believe all kids need a voice, but especially kids with special needs.  If I don't stand up for them, who will?

I'm going to miss my students.  Over half of my class is moving on and I know already that I'll be getting a few new faces next year.  I'm sad.  I've gotten very attached to my students.  For the summer I'll be going back to work as an electrician and taking some mini-vacations and camping trips with the family.  I'm looking forward to my summer, but I'm also anxious to get back to teaching.  I found my calling.  It took a long time, but I'm here and only just now getting warmed up!  Cheers!

Wednesday, March 21, 2012

World Down Syndrome Day (3/21).

Today is World Down Syndrome Day (3/21)!  Judah and I say cheers to all of you that are a part of our lives!  Give some love to the people in your life that have Down syndrome and help educate the world about our buddies!

Thursday, March 15, 2012

Spelling.

Lately Judah has really grown academically.  We have nearly all of the latest technology at our school, to which he has fully embraced.  He can find his way around on a computer, iPod, and iPad like you wouldn't believe.  He's turned into a computer nerd actually and it's hard to pull him away from sites like STARFALL.  I attribute his teachers' hard work AND his stubborn determination on computers to what you see in this video. 

Yes, my boy is spelling!  He does this all the time on his own now.  If he sees a word large enough to spell out, he'll stop and spell it.  This happened last night while he was getting ready for bed, so I grabbed the video camera. This is the first step in reading.  He's in kindergarten, and I'm super stoked.



Friday, March 9, 2012

Sewers of the American dream.

I found THIS ARTICLE on a certain social network that a friend posted earlier today.  Please click on the link and read it before continuing on with this post.

My initial reaction was anger.  I've tried to settle down.  It's been a few hours and I'm still pissed.  This blog thing has been great therapy for me, so I figure writing is my healthiest outlet right now.  Chances are, if you're reading this blog, you are either connected to me and my son somehow, or you are a stranger who is connected to someone with Down syndrome in some way.  Either way, you're probably unsettled (at the very least) by this news.

I generally take a staunch pro-life stance.  I think abortion is a horrible choice.  In our country it has been lawfully allowed to be a choice, unfortunately.  People are responsible for the choices they make.  I think it sucks, but I'm not going to ride someone for making poor choices.  However, I take this one personally. This is my blog, so I can write whatever I want.  Another plus to living in the United States.

We're spoiled in the US.  To a horribly sickening degree.  We are allowed to consume, abuse, and throw out whatever we want and to any amount we choose.  We can do whatever we want with little consequence until it affects others.  I don't need to go into detail for you to draw your own conclusions and ideas of what I'm referring to.  We can also file lawsuits and get a lifetime worth of cash for trivial crap.  On to my point...

The couple in this article are not hurting for money (or at least they shouldn't be).  Dudes an engineer, and she's a dental hygienist.  THEY WON the $3 million dollar law suit.

I'm angry, not so much about the abortion issue.  I'm full of sorrow that our society allowed them to win. I'm full of sorrow that only 11% of babies with Down syndrome are allowed to live.   You shouldn't have to be a person of high moral standards or faith for something like this to disturb you. I'm a teacher and the sole provider in my family.  I work hard to honor God with my life, make a difference in the lives of others, take care of my family, and sleep well at night.  But I make peanuts for the circus act I lead.  These people do not and they got $3 million for "the estimated extra lifetime costs of caring for a child with Down syndrome."  This is no different than people who abuse welfare in my opinion.  America, you should be ashamed.  The jurors unanimously voted on their behalf.  All 12 of them.  Pure disgust.  

I'm going to close with some words that I would say to this couple:

Having a child with Down syndrome is a blessing.  You don't deserve your daughter.  Life is not without struggle and trials, even heartache.  People like you think you can skate through unscathed.  God forbid something "unpleasant" happen.  

What you should have done was have a good cry, go to a support group or whatever you needed.  Then put your big boy pants on, hold your chin up, and get on with life.  Instead, you have whined and complained, and enough people listened and awarded you for it.  You live a shameful life of self-obsession and vanity.  I hope your daughter brings joy to everyone she's around and you live a lifetime of shame for your actions.

Monday, March 5, 2012

A whole lotta feeling.



I’m not an emotional person.  I usually bury my feelings deep down and never talk about them.  Having a boy with Down syndrome (plus a supportive wife, and two daughters) has forced me to be more in touch with my feelings.  As you might guess, I’m not a complainer either.  I take life as it comes to me and make it work.  Even through the struggles.  I believe everything happens for a reason, and nothing is left up to chance.  With that being said, there’s a great deal of emotion and feelings in this post.  I don’t talk about it much, so this is a way for me to vent.  Writing is therapy.  I write because I most likely won’t talk about it any other way.

The inspiration for this post comes from an occurrence that happened in a church service yesterday.  Prayer requests were being spoken and prayed for at the start of the service.  One request was for a couple that just found out their unborn child will probably have Down syndrome.  Of course my ears went up and I became unsettled that this was even being brought up.  I leaned over and told my wife “let’s go, I’m done, I’m not doing this anymore.”  Thankfully, she quickly reeled me in and reminded me where we were when we first found out Judah would probably be born with Down syndrome.  

There are many things that go on in the minds of parents just finding out their kid will have special needs.  I went through my share that’s for sure. I think to assume one thing or another doesn’t really do anyone justice.  There’s always a ton of assuming by outsiders, family, and friends.  We all went through different emotions and probably continue to have various ideas and beliefs about the reasons why we were given a “special” kid. 

When Judah was first born I read many articles and books that mentioned taking some time to grieve over the child I “didn’t” have.  That may work for some people, but it never sat well with me.  Judah IS the child I was given.  There isn’t one I “didn’t” have.  So most of the emotions I had to deal with came from the questioning of “what do we do now?” and “where do we go from here?”  I didn’t grieve.  But I did become very angry.  I was mad at myself for the way I responded during the pregnancy.  I was mad at others for the way they responded.  I was mad at God for throwing another wrench in my system of life.  I also took things too personal and was extremely defensive at first.  My son is now six years old and I earned a college education along the way.  I’ve grown in so many ways since he was born.  There have been many challenges and twice as many blessings.  I’m a different person now.  I’ve changed a lot.  I believe I’ve changed for the better. 

Down syndrome is a mystery.  Sure, there are many things about Down syndrome that we know, but many that we cannot explain. I can’t explain why many people with Down syndrome are full of joy and have so much love to give.  I can’t explain why many people with Down syndrome seem to lack the negative aspects the rest of us have to fight in life such as prejudice and hate.  I can’t explain why many people with Down syndrome stay child like their entire life.  I can explain how fortunate I am to have been blessed with a son who has Down syndrome.  I can explain how much joy he has brought to the lives of most people he comes in contact with, especially my family and I.

Here are the facts: my life has been profoundly changed because I was given a child with Down syndrome.  It changed my perspective on faith and life completely.  I am a better person because of my son.  I have more love and joy to give to the world because I see life a totally different way now. I get to teach kids with Down syndrome and others with special needs.  That alone makes waking up every morning an exciting adventure.  They’re just fun people to be around.

I can’t explain God’s plans or fully understand what His best interests are.  But I can say that it has been much better and more fulfilling than my own, even when we have to endure struggles.  Drastic events and changes had to be set in motion for me to find the right path in life.  I’m thankful for the path I’ve found and the life I’ve been given.  I don’t know what lay in store for my family and I but I strive to take full advantage of each day that I’m given. 

Too often people try to explain situations and God as if they’ve got the final and absolute answers for many of life’s greatest mysteries.  I say to those people... stop... cut it out.  You’re just a person like the rest of us.  You haven’t been given magical God powers and you can’t see into the future or know what’s best for your own life, let alone mine.  Unless you’re giving unbiased support and encouragement, keep your mouth shut.  Spend your time in a more worthy manner such as giving yourself to others instead of taking.  Spend your time lending an ear to listen instead of wagging your tongue with know it all answers.

I can also explain that having a person with Down syndrome in your life will not come without its challenges.  It’s hard sometimes.  That’s the truth.  But the love, joy, laughter, smiles, and life they bring are worth every struggle.  We rejoice in what used to be small things that we took for granted.  Through what some would consider an “unwanted” child, God has taught me what love, joy, peace, patience, kindness, faithfulness, gentleness, and self-control are.  Why would I or anyone else ever consider praying that away?  I’m thankful for what I have been given.  I’m proud of the boy my son has become and the person he will continue to grow into.  I’m proud to be his daddy and I will hold fast and value every day I am given with him.  If I had a chance to talk with the couple who asked for prayer about having a child with Down syndrome, I would tell them "Congratulations! Now, hold your head up and be strong, it's well worth the ride."

Wednesday, February 22, 2012

Always swinging back.

My wife took Judah to the audiologist today for a post op check up.  The doctor reported that everything is exactly as it should be.  The tube is draining properly and his ears are nice and dry.  His hearing even checked out as significantly improved since right before the tube placement.  Judah may look frail physically, but that kid has been through the ringer with surgeries.  He's a lot tougher than he looks, and certainly more tolerant to pain than most of us.  He just keeps getting up and swinging back when life knocks him down!  I sure do love my little buddy!

Thursday, February 2, 2012

The Trooper.


My little trooper endured his 7th overall surgery (8th time under anesthesia) and 3rd ear tube placement today.  This was really just a routine procedure but I never get used to it.  It makes me nervous every time.  We spent more time in pre-op than the surgery/waiting/recovery combined.  He woke up right away ready to play Angry Birds on the iPad.

Last week the ENT doctor reported that Judah still has a whole in his right ear (with no tube) but the left ear tube fell out some time ago and the hole closed on its own.  So this surgery was just to insert a new tube in the left ear only.  Lately he's had a lot of pressure built up from lack of drainage.  The doctor said it was effecting his hearing.  He hasn't had tubes for quite some time, and since the last tubes he had developed a mean case of snot nose, or what the doctor referred to as:  

"Rhinitis" a very common condition that has many different causes. Basically, rhinitis may be defined as inflammation of the inner lining of the nose. - Medicine Net

It goes on to medically define a runny nose as "rhinorrhea"... fitting.  From now, that's the word I'm using.  Judah is very familiar with "rrhea's"!

So basically, due to all the pressure built up from lack of ear drainage, he's been leaking out of his nose.  A ton!  No fun for anyone.  So the doctor said the tubes should help that out a lot.  He had super rhinnorrhea right before surgery and it smelled bad.  After surgery... it pretty much all cleared up and his nose and ears no longer stank!  Doctors are kind of like magicians.

He was in high spirits all day today after surgery.  He was back to his happy self in no time and putting smiles on faces for the rest of the day.  He basically sang the whole 3 hour trip back home to some songs of his request ("Iron Man" by Black Sabbath) and many on my request... Rancid, Minor Threat,  etc.  I know, I know... some of you are probably thinking I'm crazy for exposing him to that loud rock music right after an ear surgery... but he was like a new kid.  So full of life again!

I feel like my buddy hasn't been himself for a couple of months until today.  I can pin point it to right around Thanksgiving.  He has been especially ornery, grouchy, and defiant since then.  I guess I would be too if I had major pressure built up in my sinuses and couldn't hear very well because of it.

On another note, this was my first day absent as a first year teacher.  Not too shabby, but then again I'm not one to call in.  Especially because I love what I do.  I love my boy more though!  Welcome back buddy!

Wednesday, January 25, 2012

Third time's a charm.

My boy, Judah, can be a bit slow when it comes to reception.  I've also found this to be true with most of my students who have Down syndrome.  Usually if I ask Judah to do something I have to tell him about three times before he carries out the command.

What I've learned with Judah, and what I am also seeing in my students is that they are slow to process commands.  To the common person this appears to be defiance, when actually it's just the kid with DS processing what they were told/asked. 

This requires a lot of patience on my part.  I'm used to my girls listening and doing what they're told/asked the first time.  With Judah and my students I often get frustrated and on occasion lose my cool with them for taking so long.  I almost have to unlearn and re-teach myself to be patient, say the command about three times and then expect the appropriate response.  

Monday, January 23, 2012

Driveway Bombing with Judah.


My last post got the wheels spinning in my mind about what my son, Judah, can do.  Ironically, today when we got home from work/school I was tinkering around in my garage while the kids played in the driveway.  Usually Judah kind of pushes around on the little red trike you can see in this video.  To my delight, however, he grabbed Karis' (his older sister) skateboard and started bombing the driveway.  Even more awesome than that, he began to problem solve by figuring out ways to stop himself.  He figured his trike would make a great buffer between his speed and the street.  When Karis came outside she wasn't too pleased he was on her skateboard so I let him use mine and captured some of it on video.

I always feel like I need to include a "moral" or "reason" for each post.  So here it is: just when you think you've got your kid with Down syndrome figured out or become discouraged because of something they "can't" do, they grab a skateboard and start shredding in the driveway!

Sunday, January 22, 2012

Trike Rodeo.




A few of my students are pretty athletic.  The one in this video is especially active.  He loves to ride the trike.  On several occasions I have allowed him to ride around the school campus (supervised of course).  My school is almost completely outdoors and entirely paved.  The school was meant to be ridden and I am often tempted to bust out the skateboard after work and shred myself.

I think most of us take for granted the "ability" that it requires to ride a tricycle.  For many kids, it comes naturally, especially because there is not much balancing involved.  To a kid with Down syndrome (or other cognitive delays) it's hard work.  It requires moving legs rapidly to pedal, while looking ahead and being prepared and able to steer the trike in the right direction. Not to mention balance and awareness of surroundings, etc.

Judah has been seeing a physical therapist since he was about 6 months old.  He never crawled.  He went from combat crawling to walking.  We thought he'd never walk; now sometimes we can hardly keep up with him because he loves to run.  Riding a trike... not so much.

But his good buddy in this video sure does!

This kid is a natural on the trike and would probably ride all day if I let him.  Last week I brought the video camera to work and filmed him doing what he does best... ride!

So for those of you (including myself) who may be discouraged about your child's physical ability to do things, watch this video and know that our little buddies are capable.  It's hard for me not to compare Judah to other kids his age with DS.   I must remind myself that just like any other kid, they're all different and grow at their own rate.  They're also just like other kids in that some of them are just not athletic.  They may be talented in other areas or prefer other interests.

For the rest of you that do not have a child with Down syndrome (or cognitive delays), please be patient with our little guys.  Many of the things that we take for granted don't come as easily for them.  They have to work twice as hard and three times as long.  

I'm proud of what Judah can do!  I'm proud of this boy too and I know his family is thrilled that he can rip on a trike!



Wednesday, January 11, 2012

Down for Life.

Today Judah's teacher told me a story about some of his classmates.  They have a new student in their class.  Apparently the new student was thrown off a bit by Judah and unsure how to react around him.  One of the little girls in the class told the new student: "Judah learns different than me and you, he's a bit slower because he has what you might call... Down syndrome."  

I'm not a cryer.  I'm not trying to be macho, it just takes an act of God to pull tears out of me... but I believe kids with DS are an act of God and stuff like that chokes me up.  I couldn't be more proud.

At the beginning of the school year I read My Friend Isabelle to Judah's class and gave each of his classmates a xeroxed copy of this coloring book.  I've seen positive results throughout the school year already.  Having that little girl say that encourages me that advocacy does pay off!

Here's some links to encouraging stories that are circulating the interwebz lately:



Noah's Dad on the News

Be an advocate for kids with Down syndrome and all kids with special needs! 

Monday, January 9, 2012

Whan, tewe, whee!

Over the Christmas break Judah took up smart mouthing me.  I cannot handle a kid talking back, it's bratty and just makes me want to whip the belt out and tan hides.  However, I find myself at a standstill with my own son because it's one of the cutest things he's ever done.  For instance, when told to go potty (yes we still use this word with him and sometimes use it unknowingly with adults) he replies "No potty!" Not so cute at first, but after repeating myself 2-3 times I respond with "I don't like your attitude".  Without skipping a beat he quickly shoots back "Ah! Too!" (attitude).  This kind of response is beginning to get out of hand as he does it with just about every command or even just a suggestion I say to him.  For example:

Me: Close the door buddy. 

Judah: NO BUDDY!

Me: No Judah, close the door please.

Judah: No peez!

Me: Fine, I won't be polite. Close the door now!

Judah: No now!

Me: Really? I'm not asking, I'm telling you.

Judah: Tell eww!

Me: Ok Judah, I'm going to count to 3...

(He quickly interrupts...)

Judah: No whee! (3)

Me: I think you need a spanking for talking back.

Judah: NO BUTT!

Me: Cut it out mister!

Judah: Ith Doe! (mister)


Another example is with TV.  Judah loves TV!  If we let him he'd watch it all day.  His favorites from when he was super little have always been Sesame Street, Backyardigans, and Blues Clues.  Now that he's getting to be a "big boy" he wants to watch anything that has fighting and explosions such as every super hero movie or cartoon, but especially Iron Man.  He also loves rasslin' (WWE).  He has a bad habit of going through our collection of movies and shoving them in my face.  That's his way of letting me know he wants to watch it.  Here's an example of a conversation we might have:

Me: No buddy, no movies right now.

Judah: No 'VEES!

Me: I'm serious buddy, go play with something, you can't just watch TV all the time.  No TV!

Judah: TV!

Me: Go put that DVD back, you're gonna tear it up carrying it around. No DVD's!

Judah: No! Deedle Dee's!

Because of all the fighting shows he watches his favorite word of late is "fight", and he loves to act it out.  If I'm busy or can't play with him he'll argue with me about it like this:

Judah: (at the top of his lungs) DA EEE!!! FIGHT!!! 

(He then begins kicking and punching at/on me if I'm standing or sitting.  If I'm lying down he'll just full on tackle and throw himself on me with elbows and knees flying.)

Me: Not right now buddy, daddy's working (or whatever I may be doing).

Judah: DA EEE!!! NO! FIGHT!!! 

(I get clobbered once again)

Me: I'm sorry buddy, maybe later.

Judah: DA EEE!!! NO!!!  No later!

(A good pummeling once again commences)

Me: Ok pal that's enough, go play with your men (that's what we call his action figures), make them fight.

Judah: NO MEN!

I'm still working on stopping this, but honestly I almost look forward to it because it's so cute and I think it's rad that his little boy side is finally beginning to show.  Most of the time after one of these conversations I just ignore his behavior and he walks off sucking his thumb and pouting.

It's times like these that I understand parents that don't discipline or correct their child with Down syndrome.  I just keep reminding myself that it's only cute now because he's a little boy.