Monday, July 28, 2014

Summer ESY

Each summer since Owen started attending public school, he has been offered the chance to attend ESY--short for extended school year.  This is usually offered to students who might regress in their skills over the summer months.  We have taken advantage the last two summers and Owen has enjoyed his time there.  Typically the summer session would run from the middle of June to the end of July.  But this summer, Owen's ESY placement is a little different.

2 years ago our school district decided to create a new summer program for those students entering Kindergarten in the fall.  They wanted the program to include things like reading/literacy readiness, math skills, writing instruction, science labs, and the typical work stations that Kindergarten classrooms use.  In essence, they wanted the students attending to have a sense of what the typical day in Kindergarten is going to look like.  The district also wanted this summer program to run closer to the actual beginning of the school year so that students wouldn't have too much lag time between sessions.

So Owen will be attending summer school for 3 weeks, starting the last week of July and ending in the middle of August.  He will go M-Th and it will be a full school day for the first time--8am-2pm!  He will be eating breakfast and lunch at school, which is brand new for him (and for me!).  It will be an inclusive environment:  there will be students with IEPs and students without, all attending the same program, although it will be a small classroom, which is very good for Owen.  Owen's Kindy teacher will be handling the special education needs of the students, which is also great because he can get comfortable with her before the full school year even starts.

This is a big leap for Owen and I.  A full day of school........he's never done that before.  I will be losing my lunch buddy and I am sad about that.  But I like that he is getting some practice at this before the school year starts when he's eating lunch with all the Kindy classes at the same time.  I think he's going to have a blast and I will find things to do with my time......organization of the crawl space has been calling my name for months.

I know one thing for sure........I heard squeals of delight when that yellow bus came down the street this morning ........and for the record, they were from both of us!

Friday, July 25, 2014


Owen has lots of little nicknames in our house--our favorite is "Owie".  But then based on some of his behavior........he might need some other names?  You be the judge.

You know when someone says "squirrel" to insinuate that a person got distracted?  Well in Owen's case it would be appropriate to yell out "bird"!  Owen loves birds.  He *thinks* he's the "Bird Whisperer".  But I'd guarantee that the birds call him "Bird Annoyer".  Here, while trying to play his favorite game, he is, of course, bird distracted.

Should he be "The Problem Solver"?  He did figure out a fantastic way to carry as many balls back to us in one trip.  (It's kinda the way I carry groceries into the many bags can I carry to try to make one trip!).

Or does he look a bit like Edward Scissorhands here?  Maybe "Owen Wiffle-ball Hands"?

It's pretty clear to see that this boy LOVES playing ball!

Tuesday, July 15, 2014

Top Ten

Top Ten Ways to know your kid watches too much baseball:

10.  He can find the MLB logo anywhere and point out the ball, the bat, and the helmet.

9.  He stops at any restaurant in the Mall of America to see if they have a TV on and if they are showing baseball.

8.  He attempts to steal the autographed baseball you got for your husband for Father's Day at least once a day.

7.  He turns any stick no matter the size into a bat.

6.  He refuses to get into the car until he's slapped the Phillies logo sticker on the car window at least twice.

5.  He swipes anyone's cell phone and attempts to find clips on Youtube of home runs.

4.  He creates his own batting stance, complete with hitting the bat on the ground and doing a little bat gyration.

3.  He takes his Phillies hat off the rack every. single. day. to look at it and trace his finger on the word "Phillies".

2.  He raids the laundry basket and his father's closet to find all the Phillies paraphernalia and attempts to hide them under his bed (I found 3 hats and 2 t-shirts under there last week!).

1.  He slaps his leg and yells whenever someone strikes out..........RYAN HOWARD, WE'RE LOOKING AT YOU!  (If you don't get the Ryan Howard reference.....he plays first base for the Phils and strikes out a little too frequently for my taste.....and for Owen's!)

I can find the Phillies logo anywhere!--Minneapolis Convention Center

Monday, July 14, 2014

Letter to My Earlier Self--Disability Blog Hop

*This is Post #3 in a series of posts regarding disability for the Summer Blog Hop Series:  Challenge! at Down Syndrome Blogs.

Dear Me from 2008,

You found out you're having a boy, huh?  Didn't see that one coming, did you?  Well, there's an even bigger surprise waiting for you on May 5, 2009.  You'll have his name all picked out and you even got crafty and bought big letters, painted them, and hung them in his room:  OWEN it says above his changing table.

You've said to yourself and others...."I don't know what to do with a boy!  I've only had sisters."  You keep thinking baseball and dirt and climbing trees and scrapped knees.  You know, stuff BOYS do.

But in that delivery room you're going to be told 6 words that are going to change your life:  "We think he has Down syndrome."  You are going to be upset, worried, and afraid.  And that's OK.  You are going to need to feel those things. 

But you know what?  You're also going to find yourself; you're going to change in so many ways.  You're going to learn that Down syndrome isn't so scary.  It's going to be challenging......absolutely!  But what is life without a few challenges, right?  And sometimes it might seem like you're in a dark tunnel where there is no light at the end.  But the light will show up.......sometimes out of nowhere!

There's going to be a whole new community and family that you will embrace and you will be so excited in a few years when you meet a bunch of these Ds mamas at a convention.  

Something else you're going to find out?  Owen........he's just a boy.  He's going to love baseball, just like you thought.  He's going to get super dirty and run from you when you try to clean him up, just like you thought.  He is going to climb EVERYTHING and maybe someday a tree, just like you thought.  Those knees of his will have their fair share of bumps and bruises from playing hard and learning, just like you thought.

You will love him with every fiber of your being.....probably more than you could imagine you would feel for someone else.  And everything you do, every hour you spend on speech therapy, helping him try to ride a bike, doing hand over hand to get him to use a fork, picking up 50 crayons while trying to get him to work on writing his name--it will all be worth it.

Because HE is so worth it. 

Monday, July 7, 2014

Coming to Terms--Disability Blog Hop

*This is Post #2 in a series of posts regarding disability for the Summer Blog Hop Series:  Challenge! at Down Syndrome Blogs.

**PLEASE NOTE:  This post is personal.  In no way does it negate anyone else's experience--this is simply my own.

Coming to terms with Down syndrome wasn't actually that hard for me when Owen was born.  We were told in the delivery room that it was suspected and that was confirmed a couple days later after a genetic test and karotype.  I cried a bit the first evening after we were told, but then I grabbed my laptop and started scouring the 'net, looking for anything about Down syndrome.

I read and read to my eyes felt like they would pop out of my head.  The best reading came in the form of blogs from other parents who had a head start on this road.  Those stories were very important to me and gave me some strength and confidence that I wouldn't be alone; there were other families like mine.

For me, there wasn't much to grieve.  I didn't really have a preconceived notion about who Owen was.  I was never even sure what he would look like.  I remember for many months before he arrived trying to imagine his face, his hair, his little body......but all I could come up with a stock image of a baby, looking much like the one on Gerber or Pampers ads.  Many people have said that they needed to grieve the child they were expecting.  That didn't happen for me because I just wasn't expecting a particular person.

Instead I went into my "get educated and get on the horn" mode, which is what I do whenever something happens that seems out of the ordinary.  I'm what I would consider to be a very logical, rational person.  That's not to say that I'm not emotional because I am, but when I need to tackle something, I know that my emotions are just going to get in the way.  So I chose to put on my other hat and got to work.  I wanted to figure out what I needed to do in order to make Owen successful.  I remember reading the "Babies with Down Syndrome" book from cover to cover.  I ran out to Barnes and Noble and pulled just about every "Skills" book off the shelf--the Gross Motor one was like my bible for the first 2 years of O's life!

As life moved on, I found that the biggest obstacle for Owen is his speech.  I don't know why, but I just figured he would talk.  When words didn't come by the time he was 2 and babbling was a rarity, I just knew something wasn't right.  Now after 3 years of hard work, 2 private speech therapists and an apraxia diagnosis, we are just now getting some sounds and one word (UP!).

And this is where I struggle so hard.  Speech.  It just isn't there.  I don't know if it ever will be there, either.  I desperately want to hear his voice.  I want to hear "mama" so badly it hurts.  I want him to be able to communicate with his peers in school and interact with other kids at the park or the pool.  I can see he wants to do that too and he gets frustrated if he's trying to tell someone something and they don't understand.  I want him expressing himself in a positive way, not a "I just pinched you to get your attention" kind of way.

It gets really difficult when I'm in a grocery store and I hear a baby--an infant--babbling and I realize, wow, my kid is 5 years old and he barely makes the sounds that a 6 month old child makes.  And then I'm the bumbling lady crying in the canned goods aisle because when that moment hits, it doesn't matter where you are, the waterworks are going to turn on.

So I struggle to come to terms with Owen's speech difficulties and the real unknown about it all.  I would like to say I have completely embraced it, but that wouldn't be true.  I am happy for my friends whose children are making awesome progress with their speech, but that doesn't mean that I'm not sad for my own child.   I've accepted that Owen will have speech issues probably for many years to come.  But I think it's the uncertainty that I have such a hard time coming to terms with--will this go on for 5 more years?  10?  Lifetime?  And maybe that's the logical person in me demanding an answer--why can't you just give me a time frame here?! 

I am, like many people, a work in progress.  Each day I learn to understand a little more about Owen's struggles and how I can help him work around them to be successful.  Therefore I am constantly mindful of one of my favorite quotes (thank you, Mr. Frederick Douglass!):  "If there is no struggle, there is no progress."

Tuesday, July 1, 2014

Disability: My Connection (Disability Blog Hop Series)

*This is Post #1 in a series of posts regarding disability for the Summer Blog Hop Series:  Challenge! at Down syndrome Blogs.

If you've been reading here for awhile or you know me personally, you know that I have a son, Owen, who is 5 years old and you know that he has Down syndrome.  That gave me a 1st class ticket into the world of disability.  But I've dealt with disability before I ever had Owen.

While I personally do not have a disability, I have worked with students with disabilities for many years, dating back to my student teaching and observation days.  In college, while preparing to become a teacher, we were required to have a specific # of observation hours.  We would receive a placement at a local school (high school for me since I was planning to be secondary certified) and be assigned a teacher from our field of study (social studies for me).  We would then set up times to come observe how they taught and interacted with students.  We would often be assigned other tasks, like setting up the classroom for an activity or discussion, taking things to the office/running other errands around the school, or working with specific students who needed extra help.  One semester I worked with a student who had dyslexia, which was all brand new to me.  I doubt that I helped that student much because I didn't know any techniques then that would have been beneficial to her!

But as time went on and I got my first teaching job, I became more aware of disability and how it affected my classroom and the way I taught.  During my 4th year of teaching, I was asked to take over several TAM classes from a teacher who had resigned at the end of the 1st semester.  The TAM classes (team approach to mastery) were co-taught by one regular education and one special education teacher.  Some students had IEPs, while others did not.  That was probably the hardest, but most eye-opening semesters of my teaching career.  It was during that time that I really understood that every student comes to your classroom with a different set of strengths and a different set of challenges.  It was my job and my colleague's job to figure out how each student learned best and how to incorporate that into the bigger picture of an inclusive classroom.

Students ran the gamut of disability:  we had students with cerebral palsy, reading difficulties, speech disorders, impaired vision, complicated medical issues, physical disability, Autism spectrum, ADD/ADHD, and traumatic brain injury.  When we had students in wheelchairs, we had to think about how the room was arranged.  Could "Bill" move his wheelchair around the room during a stations activity?  Would the cords of the CD players get in the way?  What size print would "Kelly" need in order to be able to read the test on her own, like she requested?  What if the para for "Susie" was absent on a test day and she needed someone to scribe her answers for her?  Where do we put "Johnny"'s seat so that he can best pay attention during class time?  How many copies of the overhead notes do we need so that those who have writing difficulties can take their time writing out the notes?

I never really THOUGHT about those things from my other classes.  And then I said to myself......why not?  Just because a student doesn't have an IEP doesn't mean that s/he may not have trouble paying attention or seeing the board or reading the print in a textbook.  I started making changes in all of my classes so that struggling students had a better chance of being successful.  Having those TAM classes for 3 1/2 years taught me more about disability that I had ever learned in my coursework, observations, or a college textbook.

And it's that experience that makes me a better advocate for Owen today.  I know how the teaching world works.  I know how IEPs come together.  I know what kind of environment at school that Owen does best in (for now anyway!).  It's the other parts of the disability world that I'm shuffling around, medical, and my comfort level of being a parent wading through what seems like a quagmire sometimes.

5 years in and I still feel like there is so much to learn and so much to embrace yet.

Thursday, June 26, 2014

"What Does He Have?"

Normally the question in the title of this post can set my blood to boil, cause me great annoyance, or turn me into a crying mess.  But on this particular occasion, the answer seeker was a little girl about 9 years old and that has never happened to me before.

We were at the splash pad (AGAIN!) and Owen and I were hanging out in the lazy river tossing a pebble back and forth.  I was getting him to practice his "uhhhh ppppp" since he wanted me to throw the pebble high into the sky.

The pavement was quite hot that afternoon since the sun was shining brightly.  This little girl came walking by and said how hot her feet were........"It feels like they're on fire!"  I told her I felt the same was VERY hot.  She sat down next to me, asking if we'd ever come here before.  I explained that this was one of our favorite places.

Owen tossed the pebble and it hit me in the leg.  I said "Ouch!" and he immediately signed "sorry, Mom".  The little girl asked me "what did he just do with his hands?".  I told her that he was using sign language and what he had said.  She waited a moment and quietly asked, "Is he deaf?".  No, I replied.  "Is he autistic?".  No, again.

She waited another beat........"what does he have?"  I told her he has Down syndrome.  "I've never heard of that!", she said.  So I asked her if she knew about DNA to which she replied that they learned about it in health class last year.  I said that a person's DNA is made up of lots of things including chromosomes and explained that everyone gets 23 chromosomes from their mom and 23 chromosomes from their dad which equals 46.  People with Down syndrome have 1 extra chromosome, so they have 47.

She nodded her head......"what does that extra one do?"   A shitload I thought!  But instead I said that sometimes it can cause people to have trouble with their speech or that they might need some extra help in school or that they might need to see a few more doctors.

She thought about that and then said probably one of the greatest things I've ever heard a little kid say:  "Oh, so he's just like everybody else then?"

Yes, sweet girl, he certainly is!

Wednesday, June 18, 2014

Road Trippin': Take 1

Over the winter, the hubs and I (because we are ridiculous planners!) made a list of places we'd like to visit that are within 3-4 hours of the Twin Cities and have fun attractions like water, museums, hiking, and biking.  Since Owen is a great traveler in the car (and has his iPad now), we knew we'd be able to handle quite a few of these during the weekends of the summer.

Last weekend, we checked the weather and saw that it was going to be quite nice in Dubuque, Iowa, so we packed up and hit the road on Saturday morning for our first road trip of the summer.  The plan was to check out the Effigy Mounds National Monument nearby and visit the National Mississippi River Museum and Aquarium downtown.  We also realized that the baseball field from the movie "Field of Dreams" was about 20 minutes away, so we added that to the list as well.

As we listened to an audiobook while Owen napped on the way down, we enjoyed the sights of small towns.  We took a 2 mile (round trip) hike at the Effigy Mounds, which has some great views of the Mississippi River.  The mounds are burial sites of Native Americans that lived in the area hundreds of years ago.  Owen carried a little stick with him the whole time as if it was his walking stick!  He loved being able to walk the trail next to us and he enjoyed the small children's area where he looked at animal bones and pelts.  We had dinner outside at a little restaurant in downtown Dubuque to finish off the day on Saturday.

This was a long trail of small mounds all the way up

On Sunday we decided to hit the field of dreams site in the morning after a stop at Dunkin' Donuts........yes, I was a very happy lady as we don't have a single one in the Twin Cities!  We got lucky--they had just had a huge celebration of the 25th anniversary of the film's release the day before and the place had been swarmed.  Kevin Costner and other film stars had been in town and at the field to mark the anniversary and the gals in the sales booth said the place was crazy!  Well on Sunday morning just after it opened.....only 2 other cars in the parking lot, so we hit the jackpot.  Once we hit the field, Owen knew exactly what to do when we said "go, run the bases!".  He ran from first to home with Dad trailing behind.  We bought him a little wooden souvenir bat that he has carried around like precious cargo for days.  He went right to home plate and got into his batting stance.   The best part?  It was free!  There are no fees to check out the field.  Sometimes they even have pick up games going on and you can sit in the bleachers and watch.

Heading towards first......
Heading towards home.....
We want a pitcher, not a belly itcher!
 Before leaving town we spent some time at the museum and aquarium where they had an exhibit on turtles from around the world.  Owen loved checking out the turtles eating and swimming.  He also got to touch a crayfish in the wet lab area.......he listened to the volunteer tell him to use one finger and to be gentle.  Of course on our way out, he spotted an area near the boat dock where he could throw rocks into the water, so we finished our time there by tossing quite a few.

Dubuque is a very cute town and the views by the river are beautiful.  We didn't explore everything, so there's always a chance we'll be back!

Thursday, June 5, 2014

Myth Bustin'

Most days Owen is a pretty happy kid.  He likes going to school, he enjoys playing outside at home and he has a great time swimming at the Y.  Put on any kind of ball game on the TV and he's in 7th heaven.

But sometimes, he has a bad day.  You know why?  Because he's human and we all have them.  Sometimes we just wake up grouchy or something at work sets us off.

Last week Owen was at his swim lesson and about 20 minutes into the lesson, all he wanted to do was hang out in the pool and do "his thing".  He was in a grouchy mood having woken himself up early from his nap.  I even contemplated before his lesson whether he should go, but I thought once he got into the water, his mood might be changed.

But it didn't and he decided that it was time to throw a little fit and be non-compliant with his instructor's directions.  He began crying because all he wanted to do was leave the lap pool and chill in the warm slide pool.  It became evident to me that his attitude wasn't going to change, so I asked him if he needed to be all done or if he wanted to finish his work.  He signed "all done" and started waving to the instructor through his massive crocodile tears.

When we were getting him out of the pool, the swim instructors (there were two--one for Owen and one for the other young boy taking a lesson alongside Owen) and the lifeguard all commented "He's never like that!  He's always so happy!" as if the world was going to end because Owen decided to.......heaven help more than one emotion.

And that's the thing about these myths surrounding people with Down syndrome.  No matter how much we parents try to burst those bubbles, people still believe them and perpetuate them, which is even worse.  So that when a kiddo with Down syndrome has the audacity to be grouchy or say something unkind or act like a normal 5 year old who doesn't want to do what is requested of him, people act like it's the end of the world or worse--that the child is uncontrollable, volatile, unstable, not capable of being with his typical peers or that his parents are doing a bad job.  Do they ever think that maybe he is simply being a person who is communicating his wants?  That it is unfair to always assume that someone is happy 100% of the time without any other emotions present?  If more people thought about their own reactions to things that happen in their lives that disappoint them, make them sad, make them angry, maybe then they would realize that pegging someone into a pretty small hole is wrong and it robs that person of truly being a human being.

I did let Owen cry for a few minutes and let the swim instructor try to engage him back into the lesson because I wanted her to see that Owen is a person with feelings and that even though he normally loves something, it's OK for him to have a bad day.  I wanted her to learn how to work through that with a child that wasn't at his best because I can guarantee that she is going to encounter that again, maybe even with a kiddo without a disability.  Yes, I cut the lesson short because I knew that he wasn't going to cooperate any further, but I hope my reaction of giving Owen a choice and letting him make a decision for himself showed them that he is a person who is capable of communicating his feelings.

"Isn't it nice to think that tomorrow is a new day with no mistakes in it yet?"---L.M. Montgomery ("Anne of Green Gables")

Wednesday, May 28, 2014

Holding All the Power

Last week I took Owen in for his 5 year well child visit.  Hard to believe it's been five years, but there we were!  We have a great pediatrician.  She doesn't specialize in children with Down syndrome or other special needs; we chose her at first because she was close to our home and we needed to see a doctor after Owen was born.  Once we met her and saw how much she cared about us and her willingness to get information about Down syndrome, we knew we would stick with her.  She is always prepared for our visits and knows Owen's medical history extremely well.

So why do I always feel such anxiety when we go to this appointment each year?  It's because of a piece of paper.  One little piece of paper on a clipboard with a pen........waiting to tell me what I already know.  When Owen was an infant, I was so concerned with him gaining enough weight to have his heart surgery, so at first I didn't even get concerned about the developmental questionnaire.  But after he recovered, every time I had to fill it out could reduce me to tears, typically in the exam room as I waited for the doctor to come in, but sometimes even in the waiting lobby area.  It was hard to read what my child should be doing and knowing that he wasn't even close to meeting those goals.  Sometimes it just made me hate Down syndrome, knowing that Owen was going to fall further behind and then fear would grip me wondering if he'd ever do any of the things on those lists.

But last week when the receptionist handed me the clipboard with the five year old checklist, I smiled and took it with me to the waiting lobby.  Owen followed me and decided to sit at the little table they have for kids.  I gave him the clipboard and the pen and told him to write some lines and practice his "O".  He dutifully went to town with that piece of paper, scribbling all over it until I wasn't able to read it very well.

When his doctor came into the exam room, she looked at the paper, said to Owen "nice writing, buddy", and promptly tossed it in the trash.  We talked about Owen's strengths, weaknesses, specialist appointments, school and private therapies.  She checked him from head to toe and we discussed what vaccinations he needed for Kindergarten.  She marveled at how well behaved he was (he was really, really good that afternoon!) and kept saying how amazing it was that 5 years had already passed.

At the very end, she pulled out the 3 year old developmental questionnaire and we breezed through it together.  I was not emotional at all; in fact it was nice to know exactly what developmental age Owen technically is--it made me better understand where his head is in relation to things like writing and potty training.  He's at the typical stage where kids are becoming more aware of and wanting to try to do those things, which made a lot of sense to me.

That silly piece of paper used to hold so much power over me.  Maybe that doesn't make much sense to most people, as it's just there to get a sense of where a kid is at.  But for me it was a daunting list of things that weren't happening and I couldn't always see a future where they would happen for Owen.  But things change and time helps.  That piece of paper has no power over me any more.  I'm holding all the power now and letting Owen show me that he is just fine and progressing on his own timetable.