Thursday, August 14, 2014

Summer School = Success!

Owen officially finished summer school today!  He really took it in stride and only had 2 mornings where he was sad to board the bus.  Of course that was because he could see Dad in the front window!  So we are going to figure out how to stash Dad away when it's time to go to school in the mornings this fall.

I, on the other hand, was a nervous, anxious wreck the entire first week.  Was he eating the provided food?  Was he listening and following directions?  Was he trying to use the potty?  Was he having fun?  Was he making new friends?  (The answers:  some of it, yes, yes, Oh yes, YES!)

Did he miss me?    Even a little bit?? (Oddly, I think he did.  I got a hug and a kiss every day when he got off the bus.  He even signed "I love you" to me one morning while I was waving to him as the bus pulled away.  Yes, I was reduced to tears that morning.)

His teacher made a communication booklet for each student and they would choose from a bunch of squares that they had to help cut out.  Those squares would show some of the activities they did that day.  She would ask what O's favorite thing of the day was and he would pick out a square.  She would ask what he didn't like, but normally she could fill that out herself through observation.  She would include a short note about something that stuck out to her each day.  If need be, she would send me an email to elaborate or fill me in on something else.  I loved the book!  It was so nice to see what he was enjoying and he and I would look over it each day together after he got off the bus.  He would sign to me about some things that he did--swinging and play outside were clearly his favorites.  I am so thankful that she is going to continue this kind of communication log for the upcoming school year too.  It's nice to know what your non-verbal kiddo is actually doing during the day!

One of the pages from his communication book
I think one of the coolest things to come out of this experience has to do with a change in Owen's general education Kindy teacher.  Like most kids, Owen was assigned to one of the Kindergarten teachers.  I hadn't met her yet, but we would have done so at Open House.  We had a met a different K teacher at our transition meeting in April but we knew at that time that she might not be assigned to Owen in the fall.  That happens a lot, so I wasn't upset about it at all.

Apparently last week the K teacher that we had met at our transition meeting was subbing for Owen's summer school class.  She and Owen "made a great connection" (her words!) and she went to the principal at the end of last week and asked that Owen be switched to her Kindergarten class for this upcoming school year.  That's right.......a teacher WANTS to have my kid in her classroom!  The principal and his special education teacher agreed to the change and I was notified yesterday.  I am so excited about that.  To me, it means that Mrs. B is going to go the extra mile to really include Owen as part of the classroom and help him engage with his classmates during the time he is in the gen. ed. classroom.   By choosing him, she has invested herself in helping him strengthen his skills so he can access even more gen. ed. time in the future.  I am beyond thrilled!

While I was nearly terrified of this summer school experience, it has really proved to be one of the best things for both of us.  In two weeks when school starts up again for the regular school year, I have no doubt that neither of us will be all that anxious and I expect him to have a fantastic school year.  I didn't think I would be writing those words, but now I do believe them.

Wednesday, August 6, 2014

The Best Note Home Ever (So Far!)

Owen is in week 2 of his summer school program and while there have been a couple of mornings where he was reluctant to go (it didn't help that he saw Dad hanging around while he was boarding the bus those mornings!), for the most part he has been enjoying his time there.  It's definitely got more academics than preschool did, so I know there are a couple of things he is struggling with, like art and writing times. 

But we are receiving good reports on his behavior and his willingness to try different things.  Of course his favorite activities are gym and recess........typical boy right there!  But he is a very frequent visitor to the book nook and is apparently loving the science experiments with water, ice, and shaving cream.

He spends time with his typical peers in the same kindergarten program each day.   Of course I have been worried that with him being non-verbal, he wouldn't make any connections with them or that they wouldn't play with him because he isn't chatty or isn't responding verbally to their questions. 

But I shouldn't have worried because I just got the best note home ever.  In it his teacher explained how his peers rush to him during morning meeting, give high fives and waves whenever they see him and that one boy has become a special friend and likes to sit with Owen during reading time. 

That note seriously made my heart swoon.  I can't explain it but I feel relief and happiness that he is doing well in this new setting, he is learning, he is happy, and he is being accepted.   I hope there are many more notes like that waiting to be dropped in his backpack! 

Monday, August 4, 2014

Road Trippin': Take 2

Last year when we went to the U.P. in Michigan, we did a quick one night stay in Duluth.  Even with that one nighter, we knew that the area was awesome and we would want to come back.  We also wanted to check out the Two Harbors-Grand Marais area as we had read there were some great state parks, waterfalls, and short hikes.  Anything that has rocks piques Owen's interest and there were several lighthouses that were on my own list to see.

We knew that the area would be busy in the summer as it is a very popular place to visit, so we booked a hotel ahead of time for the last weekend in July and hoped that the weekend would be a nice one.  We drove up that Friday afternoon and headed to the hotel's pool (of course!).  Owen had a good time watching people go down the slide and getting wet under the children's splasher.

We hit the jackpot on Saturday with a bright blue sky and fluffy clouds.  We drove up the scenic byway--Route 61 and hit various spots along the way.  One of our first stops was in Two Harbors.  What a beautiful spot!  We even got to see a barge pull out of the dock and sail away.

Rock skipping has commenced!
Love this boy!

A momma and her babies sun bathing
Mama and boy
Old lighthouse
This barge is leaving the dock!
Our next stop was this wayside that we had read about in a local newspaper called Flood Bay.  It had a very calm beach and lots of great skipping rocks.

We headed up to Gooseberry Falls to see a series of awesome water falls.  Lots of us ventured into the water, which was cool but very refreshing.  Owen did a great job navigating the slippery rocks.

I know he's thinking "how can I get into THAT?!"
Moving onto Grand Marais for lunch, we enjoyed a good meal at the Angry Trout and happened to stop in while the city was holding its annual dragon boat races.  Owen got the giggles watching 2 labrador retrievers swimming in the water outside of the cafe. 

On our way back down to the hotel in Duluth, we stopped by the Split Rock Lighthouse and hiked our way all the way and back up 340 steps to see Lake Superior.  Impressively, Owen did all the steps on his own, holding the stair rail!

My guys!
We stopped a little pie shop called Betty's Pies and grabbed a few slices of apple caramel and banana cream before finally grabbing some dinner at a Duluth institution--the Duluth Grill. 

It was quite the fun little road trip and I suspect we will be back in the fall for the gorgeous foliage!

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!