Monday, October 5, 2015

Crossing Off Another State

Over Labor Day weekend we decided to take a day to travel up to Cheyenne, WY.  It's only about an hour north of where we live in Colorado and while Solito and I have been to WY, we've been to the western side.  So visiting Cheyenne was great for all 3 of us and gave Owen another state to cross of his list.  That makes Owen a visitor of:  AZ, CA, CO, DE, FL, HI, IN, IA, KS, MD, MI, MN, MO, MT, NE, NV, ND, OH, PA, SD, WI, WY, Alberta and Manitoba Provinces in Canada, and Cancun, Mexico.  When I was 6....I had lived in VA, KY, IN, and OH, but hadn't traveled to anywhere else!

Cheyenne has a lot of neat train "stuff", including a beautifully restored train depot with a museum.  It is a cute, walkable downtown area with lots of antique shops.  The best find of the day was a small train yard that has a little track with a rebuilt steam engine, called Cheyenne Steamers.  I had stumbled upon it when I was searching for things to do in Cheyenne.  When we got in the late afternoon, no one else was there, so Owen got to ride and ride to his heart's content.  The train is maintained by a small group of train enthusiasts who like to raise money to restore old train cars.  One of the gentleman gave me a tour of a train car from the late 1880s that they are currently working on.  It was so cool to be inside and see how they are working to save the car from complete ruin.

Awesome food in downtown Cheyenne!

The Depot

These cool boots are all over the city
As a kid I was always fascinated with train travel and the westward's one of the reasons I became a history teacher.  When we took a train trip from Minneapolis to Glacier National Park a few years ago, it was an amazing experience.  To see Owen be so excited about trains now makes it really fun.  We are now the proud members of a local train museum membership and we have tried A Day out with Thomas the Train too   One of the gentleman at the Cheyenne Steamers told me that lots of railroad clubs embrace people with disabilities and if Owen ever wanted to apprentice as a young adult, he would be happy to help him or find someone who can.  Knowing that Owen is really a train fan, I could see him wanting to work at a train museum or depot in the future.  It gives me hope that Owen will find a job doing something he absolutely enjoys.

Owen loved watching the coal being shoveled into the boiler
Someone was very happy on that train!
We also hit the local botanic garden and of course Owen found the pond, ducks, and rocks.  It was a great end to a very fun day. Next time we plan to hit Laramie....I hear there is an old historic prison that has stagecoach rides and farm animals.....that is something I have got to see!

Thursday, October 1, 2015

Awareness? Month

Today is the start of both Down Syndrome Awareness Month and National Disability Employment Awareness Month.

Frankly if you aren't aware that there are people living with Down syndrome or disabilities and that they can and do work, then, well, I suspect you've been living under a rock.

This year, though, I'm not going to do much to celebrate DS awareness month because I think it's time we moved past that.  Last year many bloggers and people I respect called for the month to be renamed DS Acceptance month.  But I think we should take that one step further:  Presume Competence.

People are aware of Down syndrome, people can often accept that people have Down syndrome, but what I see now is that people automatically assume that a person without a disability can't do things for themselves.  I see it on the playground, in schools, in the work place, at the store.  Instead of assuming that a person with a disability is unable to bag their groceries or order their drink at Starbucks, how about LETTING that person try first?  Instead of assuming that a person with DS can't learn in a typical classroom setting, how about giving her a chance to show her skills there before dumping her in a secluded setting?

When you presume competence, you see a person in front of you.  You don't see a disability and assume that person is less than, unable to function like you.  Yes, it may take him longer to get out his money at the cashier or take a little bit more time to bag your groceries, but he's doing it.  Every person with a disability is just that:  a PERSON.  Yes, I realize that some disabilities are more visible to the eye and because of that may make you think about them a certain way.  But assuming what they can't do before you give them a chance to show you what they can do says more about you than them.

If you're a teacher, do your best to work with students with disabilities.  Welcome them to your classroom as full students, not "visitors" whether they are there all day, half day or even an hour.  They are YOUR students, YOUR "kids".  Make them feel that, help them know it.

If you're a doctor or a dentist, listen to your patients and their parents.  Hear their concerns and don't blow them off.  Follow the NDSS healthcare guidelines and encourage patients to get the recommended tests.

If  you're an OB, don't scare your patients who have a prenatal screening that indicates Down syndrome or another genetic condition.  Be kind, provide good resources like Lettercase to help your patients learn instead of sit in fear.

If you're an every day, average Joe, say hello to the bagger with a disability at the grocery store.  Be patient with the cashier at the coffee shop that has Down syndrome.  Start a conversation with the gal that works at Panera who has an intellectual disability.  Frequent businesses that employ people with disabilities or that are owned by people with disabilities.

Above all:  Presume Competence.  Accept.  Be Aware.

Wednesday, September 9, 2015

"He Seems High Functioning"

Those words were said to me at a playground this weekend.  My response:  "Compared to what?"   The woman didn't answer and quietly shuffled off.

I wonder.......why is OK to say that to a parent of child with a disability?  How would that mom feel if I said that to her about her typically developing son?   Am I supposed to be all giddy inside that she thinks that about Owen?  Does that make him more acceptable to the rest of society?  Wonder what would happen if we walked up to random strangers and told them they seemed high or low functioning.  How well would that go over?  I'm pretty sure there would be some fairly offended folks out there.

As much awareness months, articles about prenatal testing, inclusive settings, parent presentations that many of us in the DS community share and do, it doesn't seem like it makes a dent when someone makes that assessment of a stranger's kid that they see on the playground.    In some ways I ask myself....what's the point?

Clearly high functioning individuals with ID/DD are the only ones that society wants to see in public.  I have watched people physically cringe or quickly walk away when a child with Autism who is screaming or stimming is seen in public.  I watched a woman with her 2 small children pick up all the lunch items on their table at the zoo and nearly run off when a young adult in a wheelchair with a feeding tube was rolled over to an adjacent table.    Why was it OK for Owen and I to sit at the table next to her, but not that young man?    Why is someone's physical comfort more important than treating everyone like the human beings they are?

I don't know what "functioning" my kid me he's a fairly average little boy.  He's Owen.  He's a human being.  I don't rate him on his functioning level.  But clearly other people do.

Thursday, September 3, 2015

A New School Year

Owen is in first grade this year and he just finished his first week of class.  I actually can't believe I just wrote that.  I blinked and he was in school.   He did so well last year, even becoming potty trained.  And then we moved.  Out of state.  So a whole new school, new staff, new bus drivers, new routine, new everything.

I was apprehensive, but I was also proactive.  I contacted his new school district as soon as we closed on our house in order to get the ball rolling.  I sent off his IEP to the integrated learning services coordinator as they are called here in our district in CO.  And while we couldn't do a whole lot because the teachers didn't come back until the middle of August, we were able to register him, set up his bus route, and get him into the right school that fits with his needs.  Our neighborhood school is where one of the main Autism programs resides and the ILS coordinator and I decided that wouldn't be a good fit for Owen.  I had also made a bunch of contacts with local moms who gave me some "inside information" that helped me be ready for this conversation.  The school Owen goes to is about 8 minutes from our house, so it's very easy for me to get to if I'm needed or if I am volunteering.

Our first meeting included the principal, vice principal, and ILS coordinator.  We met the secretary and the nurse.  Everyone was very welcoming.  Our best meeting came a couple of weeks later when we met Owen's special education teacher.  She is awesome.  I totally confess to having a teacher crush on her.  She's a couple years younger than me, but we have similar personalities.  And she has boys of her own, so she knows what it's like to be a "boy mom".   She's funny, go with the flow, reads kids really well, and is willing to do a lot of communication.  She texts me a couple times a day to let me know how Owen's doing or something funny that he did.  She's even sent me a video and a couple of photos.

Owen has 2 first grade teachers because they are splitting their day.  One teaches in the morning, the other in the afternoon.  They are both really nice and are enjoying having Owen in their classroom.  Owen is one of 3 boys with Down syndrome in the first grade.  They all share an aide, who rotates among 7 different aides.  Owen is particularly in love with the one dude aide.  They are pals because of course the aide loves basketball.  His SLP is also male and loves sports.  I told both of them that Owen was going to be their best buddy because that's his thing.  It's a great motivator too.

This is the first school year that I can honestly say I wasn't worried about him going to school.  Besides the bus missing us on the first morning, it's been a pretty smooth transition for Owen.  He really enjoys going to school every day.  I'm proud of him because for any kid moving and starting at another school can be hard and even scary.   Owen has taken things in stride, while knowing his own limits.  He didn't like the cafeteria noise for most of the first week, but as time went on, he was able to adjust to it and now eats there with his classmates.  He only had 2 accidents the first 2 days of school while the team got adjusted to his toileting needs.  He's actually done a great job in this area since we moved--I think maybe 3 accidents since June.  I would have expected some regression, but we haven't seen anything, which is fabulous.  The bus drivers and bus aides are in love with him and I've been getting a smile every day he returns home from school.

Hoping the rest of the year is as awesome as it started!

Waiting for the bus on the 1st day of school

Owen got a school award his first week for being
 the 1st one ready.  Of course it was getting ready to go to
recess, but we'll take any award that involves listening!

Tuesday, August 25, 2015

Why I Can't Get Behind Some Media Campaigns

I like rooting for the underdog just as much as the next guy/gal, but there is a campaign in the Down syndrome community that I just can't endorse:  pushing advertisements that have children with Down syndrome in them.    Now hear me out before you get upset or offended.

Why don't I like this current campaign push?

Because it actually leaves out the very people it is supposedly designed to include.

I get it........everyone wants to have a shot at something like modeling for a favorite company or seeing their kid in a national advertisement.  I would be lying if I said I didn't think it would be cool to see Owen on a Target ad.  I've even taken him to a couple of photo shoots.  We had local MN friends whose kids did end up in Target ads.

I'm not against people with Down syndrome being a part of any kind of marketing.

What I'm against is the current push that seems to only include the kids who are exceptionally beautiful/cute.  They tend to be young, many are babies.  They also tend to be extremely verbal and "high functioning" (I cringe as I type that term because I really, really dislike it!).

If this campaign is supposed to be about inclusion, then where are the non-verbal models?  The Autistic ones?  The children who had to have surgery to remove an eye?  Where are the teenagers and adults with Down syndrome?  At what point does this campaign move from the adorable cute toddlers to a 25 year old man who doesn't speak?  What is this campaign really about?  Who is being served here?

If this campaign is designed to make people think our children with Down syndrome are adorable, then by golly, it is working.  If it designed to perpetuate some myths that all babies with Down syndrome are cute, smiley little bundles of joy and rays of sunshine, then check that off the list.

And maybe having these beautiful children in an ad makes someone who is afraid of Down syndrome feel a little less scared, especially about having a child with DS, but frankly, that isn't the whole picture.  Sometimes life, including a life with disability, is messy.  Sometimes it's hard.  Isn't that what should be shared?  Isn't that the real truth?

I have a hard time hearing this phrase of "changing the face of beauty".  I look at my son and see a handsome fellow.  I don't have to change anything about him to know that he is beautiful.  What are we saying about our children with Down syndrome when we use that phrase?  Are they not beautiful on their own merits?  Do we really need to change anything?

When we as a community say that we want our children to be treated like everyone else and yet we demand a special modeling campaign?  And we exclude a large portion of our community to achieve that?  That doesn't make me comfortable, happy, or want to be involved in any way.

How does this push actually help our community?  I don't think it does.  I think it makes those on the outside say, "Oh, isn't that nice?" and continue on with their lives.  This doesn't help our children fighting to be in the same classroom as their typical peers.  This doesn't help our children get better paying jobs or be able to save $$ for their futures.  This doesn't help our children who have complex medical needs but don't have the insurance to get the help that they need.

So maybe this gets some people excited about the potential for their child to become a model, but this campaign does nothing for the real issues that our community faces.   And that is just something I cannot support.

Friday, August 21, 2015

The Summer of Change

I thought last summer, getting Owen ready for Kindergarten, was a big deal.  But this summer takes the cake with our big move.  We have spent our time moving in, doing some small scale home projects, and learning about our new town.  I have spent a majority of the last few weeks working on Owen's new school set up and getting in touch with his new team (more on that later).  We are pretty much settled now and continue to explore our new space and town.

I have had the pleasure of meeting up with some great people here in Colorado...some I met before moving here and some I have found through friends.  It's a good feeling to rebuild your village so to speak when you're in a new, unfamiliar place.  I think that's the hard part as an adult--trying to find good, local friends.  But I think I've got a few now!

As crazy busy as we have been, we have also tried to maintain some routines and take Owen to places we know he would enjoy.  We've been to the aquarium, 2 train museums, and a gazillion parks.  We've found a new girl to cut his hair and the abundance of Qdoba restaurants (his favorite) are a pleasant surprise.  We found some great splash pads and neat water parks.  We joined a fitness club (no YMCAs that has an outdoor pool that Owen loves.  We hit the library (neat kids' section) and made several trips to IKEA.  Essentially we did things we would have done in MN, just found new places to explore.

And now summer is just about over for Owen.  He starts school on Monday.  He'll be in 1st grade.  I'm losing my lunch buddy again.  I'm sad and I don't want him to go, but he will.  He toured his school twice in the last 2 days and he is excited.  He is ready.....I'll get my box of Kleenex set up for Monday. help needed

Loving the giant tube slide


Checking out the train village

Checking out an old train car is quite fun

Giant sea turtle at the aquarium

Just checking out a ray with my girl, Lila

Can you see me??

Climbed up on his own to check out the view

Reading a book on trains at the train museum

He wanted in that car so badly, but not allowed!

Rare mom and boy photo op

I find a hiding place in this railcar!

Thursday, August 6, 2015

Steamers: A Different Kind of Coffeehouse

Whenever I imagine Owen's future, it comes with some worry.  I want him to live a life that is full and includes doing something for a living that he loves.  Knowing how much he loves books, I could see him working in a library.   Or working in a store or an office organizing everything because he's really good at that (he can thank his mother one day!).  Whatever he decides to do, I hope he can find compassionate employers that will work with him to help him reach his full work potential.  The thought of a boss being rude or ignorant to him upsets me greatly.  I want him to be respected for the skills he possesses and the assets he can bring to the work place.  It's something other parents of children with disabilities worry about........the future.

Last week I joined 2 mom friends (hi, Linda and Jennifer!) for lunch at Steamers Coffeehouse and Jack's Bar and Grill, outside of Denver.  We brought our kiddos, all of whom have Down syndrome. We had a wonderful, delicious lunch with great conversation and it was fun to watch all of our kids interact with one another.  But the real treat that day was getting to meet the owner and site coordinator as well as take a tour of the facility.

Why is this a big deal?  Well, Steamers is a special kind of Coffeehouse in that it employs people with intellectual and developmental disabilities (ID/DD).  The owner, Athan Miller, had worked in a residential facility for people with ID/DD.  She thought that many of her clients could be excellent workers if given the chance to learn skills that helped them be marketable employees.  So she, her husband, and a friend opened up both facilities in the hopes of employing people with ID/DD.

Last year they opened a special Prep Kitchen right across the street from the coffeehouse/grill.  In that facility, the employees do all the prep work for the food and drinks served as well as making their signature jams.  There are job coaches on site that help the employees with things like clocking in, staying on task, and understanding pay checks.  When the employees have finished their training, they are welcome to apply to work in the coffeehouse or grill or they can take their talents to other places and restaurants.

The program is so successful, there is currently a waiting list to earn a place in the prep kitchen.  And current law allows employees to only do part time work---if they worked full time, many of them would lose their disability income.  There are plans in the works, at least in Colorado, to loosen those restrictions which would allow employees to hold full time jobs and still receive their benefits.  I am hopeful that something might be in place by the time Owen is old enough to hold a job.

While Steamers has no current plans to expand their facility to other locations, this idea of an environment where people with ID/DD are able to work and are respected for their work is certainly something that should be catching on in other places.  I think knowing that there are people like Athan out there, who doesn't have any children with disabilities herself, is the key to seeing this movement of sustainable employment continue to grow.  We parents need these allies who see our children as people who can work and want to employ them.  That's a partnership I can totally get doesn't hurt that Steamers jams and smoothies are out of this world either!

If you're ever in the Denver area, please visit Steamers and Jack's.  You won't be disappointed.  Oh, and make sure you invite me too!

Trying to get everyone to look and smile...not happening!

Owen was so intrigued with the prep kitchen

I love this chalkboard in the entryway of the restaurant

I got these bad boys for myself!

I think it's great that the packers put their names
on the jars...pride of work is very important!

Monday, July 20, 2015

Owen's Love Affair with a Guy Named "The Hawk"

I hail (for the most part) from a very small town in the North East corner of Ohio also known as NEO to those born and bred there.  We aren't very far from Cleveland, so many of us are supporters of Cleveland professional teams.  I was a big Indians fan growing up and saw a number of games in the old Municipal stadium.  When I got older, I moved to the National League, falling in the love with those 1990s Phillies, mullets and all.

Owen has grown up a big Phillies Phan.  One of the first things he could point out was the MLB logo and the Phillies "P".  He loves baseball.  But even more than that, he loves a very specific announcer of baseball......and it's not even for a team that we watch!

At some point the hubs introduced Owen to a guy named Ken "The Hawk" Harrelson.  He's the announcer for the Chicago White Sox....I know......the Chicago White Sox?!  Why?  Well, Hawk is a homer.  He refers to the Sox as the "good guys" and he regularly says "us" vs. "them" and "we" when talking about the team's actions.

Image result for Ken the hawk harrelson
The Hawk doing his job
He is very animated in his delivery of the events of the game.  He has his own brand of calls too.  When someone on the opposing team strikes out, he says "He gone."  When the Chi Sox hit a home run, he calls out "You can put it on the board.......YES!"  When the Sox win, he shouts "And this game is OH-VAH!"   Some of Hawk's more memorable calls and one of Owen's favorite videos is here.

Owen loves to watch YouTube videos of the Hawk and all his game calls.  But now Owen is taking it further.  When he reads his books about baseball, he wants us to do the Hawk's calls and will keep referring back to those pages where someone strikes out or hits a home run so that he can hear Dad's impression.

I'm not saying we're turning into Chicago White Sox fans, that is NOT going to happen........but the Hawk definitely makes the play by the play a lot more fun to listen to!

Wednesday, July 8, 2015


We moved!  Finally.  For over a month, Solito worked in Colorado while we stayed in Minnesota.  Then we closed on our MN house and drove through parts of Iowa, Nebraska, Missouri, and Kansas to get to our new place in Colorado.  For nearly 2 weeks we lived out of a hotel, including a weekend trip to the NDSC conference.  I can't say it was super pleasurable, but we made it.  Our house closed last week and our things arrived over the weekend.  We spent the weekend organizing, unpacking, and making yet another list of things that we need to purchase or do for the new house.  To say I'm exhausted doesn't quite cover it.  But we are restarting our routines and I'm looking for new therapists for Owen and getting our documents together in order to register him for school.  We have NO more trips planned until Thanksgiving time and I am just fine with that.  We need some time to get ourselves together and just learn the lay of the land here.

Some pictures from our trip to CO........
At a cool restaurant in Iowa, our first stop

At the Omaha zoo in NE

At the Pony Express Museum in MO

A house where Jesse James hid out in St. Joseph, MO

Memorial chapel at D.D. Eisenhower's library, KS

A bomb shelter relic from the '50s at Eisenhower's library, KS

Watching Owen use an old phone was cool (Eisenhower's library, KS)
But I want to say this to our adopted home of Minnesota:
Thank you for........your beautiful summers, your harsh yet gorgeous winters, your abundant parks/splash pads/indoor play areas, your ability to road trip around the state and nearby to some pretty cool places, your awesome children's hospital that fixed Owen's heart.  But most of all, thank you for all the friendships we made there.  I met some people that I know I will be friends with for a lifetime!

Colorado has some big shoes to fill.  It is definitely gorgeous here and I love seeing the mountains when I look out the windows of my house, but I hope I can find some good friends here too.  I've been moving around since I was a kid, so this isn't foreign to me, but I think it gets a little more difficult when you're an adult.  Crossing my fingers that Owen will help me out a bit by making some school friends whose moms might be good fits!

Friday, June 12, 2015

Owen and the Wolf

Owen loves the zoo, has since he was a baby in the stroller.  However there is a statue at the zoo that has terrified Owen........the wolf.  It is quite realistic and I think he was afraid that the wolf would get him.  I would steer clear of it when he was stroller bound, but once he was able to walk well, he would run from the statue in fear.

Until this year.  Now Owen loves the wolf statue.  Every time we go, he HAS to have his photo taken at the statue.  Now he hugs the statue.  He has no fear of any statue and will actively walk up to them, be it the zoo, the store, the park.  Every little change shows how much he continues to grow up.

The evolution of Owen, his wolf, and the MN weather...........

First time touching the statue....not afraid!

These wolves are my friends.

OK, I'll take a pic with mom......I guess.

Another pic with mom?!

Very pensive.....I wonder if I can take him home with me?

This guy is my best pal!