Thursday, April 7, 2016

I Don't Want to be Rich

"Why doesn't he talk?" asked the little boy in the fitness club child care area when I came to pick Owen up last night.

I sighed.  And then trying to keep my emotions in check, I said that Owen was born this way.  Talking is hard for him.  I asked him if there was something in his life that was hard for him.  He thought for a second and then said, "Oh math is hard and I can't climb big trees."  So I did my best to say that everyone has something that's hard for them and talking is hard for Owen.  This kid was too little to explain what Down syndrome is and frankly, I wasn't in the mood to bust out my advocate hat.  All I wanted to do was collect my kid and head home.

If I had a quarter for every time someone asked me that question, I'd be rich.  But I don't want to be rich.

In my heart of hearts, I want a child that can talk to me.  Tell me what he did at school, instead of me trying to read the few words in his communication binder.  Or that he wants potato chips instead of tortilla chips because all he signed was the word chip.  Or that he is annoyed on the bus in the morning because it's too loud, instead of being mad all day at school and refusing to do his work.

Just when I feel like I'm in an OK place with this and I'm checking my emotions, I'm reminded that Owen doesn't speak and people notice it.  Sometimes it just plain hurts.  There is no other way to describe it.  And please don't tell me to be patient or that speech will come.  You have no idea how patronizing that is, when that is exactly what I'm doing and you also don't know that it will come.

I love Owen.  Very much.  I am proud of him and all the things he's accomplished.  The happiness and joy that I feel when I'm around him is pretty amazing.  There are just things that I wish were easier, for him, for me.  I try hard not to be jealous or selfish about this.  I struggle here and I don't know that that is going to change.

So I will try to pick myself up and appreciate what I have in front of me......a child that is healthy, that figures out a way to let me know how much he loves me, that is the life of any room he enters, that knows himself and has better self esteem than most adults I know.  I am learning, he is teaching me, I just need to continue to follow his lead.

Tuesday, March 29, 2016

A Ferris Wheel, a Monorail, and a Boat Trip....Oh My!

What do you do when you have a $400 credit on an airline that doesn't go to very many places?  Well, you take your family to visit Seattle, WA, of course!

Solito had been to the area during the summer, shortly after he started his new job.  But Owen and I hadn't been to WA yet and it had been a dream of mine to visit after being a religious viewer of the Real World:  Seattle back in the day.

We picked Owen's spring break, knowing that it was smack in the middle of rainy season (when isn't it, though?!) and figured we'd go out when the rain held off and head indoors to a few places when the weather didn't cooperate.  We actually were quite lucky in that the rain wasn't really bad when it came and our plan worked out quite well, especially since we purchased the City Pass.

We had a direct flight and Owen did a fantastic job, watching his Kindle, playing games, looking out the window, and having lunch.  After we checked in to our hotel, we took a little walk around the place, which has a nice nature trail as well as ponds and a miniature waterfall.  Then we took the hotel shuttle to the light rail station and headed to the city!

We hit Pike Place Market first and watched them throw the fish at the fish market.  We checked out random shops, including a book store that had the funniest book in the window--"The Gas We Pass".  Pike Place is pretty amazing with just about everything you can think of crammed into all its levels, including many restaurants.  We found the original Starbucks--huge line out front and an amazing cheese shop, Beecher's, that has full size windows to allow you to watch the cheese making process.  We wandered around for an hour or so and then walked down the street to meet some online friends........Leah from Our Cora Bean and Cindy from Adventures with Beth.  It's pretty neat to meet some of the people you have followed in the blogging world and this was no exception---we had a great time together!

Who knew watching cheese being made was so fascinating?!

With Leah!
The whole gang...Cindy's family, Leah's family, and mine
On Sunday, we decided to take the monorail to go to the Space Needle since it wasn't raining, but it was quite windy.  Owen loved the elevator ride up and down and he enjoyed walking around the outdoor viewing area once.  He played a video game as well.  We went down the street to the Pacific Science Center where we looked at bugs, dinosaurs, musical instruments, and how wind velocity works.  There is something there for everyone, including the parents.

On Monday, it was still windy but the sun came out in the morning, so we decided it would be the perfect time to go on the Great Wheel, a giant ferris wheel with views of Pike Place market and the Seattle harbor.  We waited in line for about 5 minutes and then got into an enclosed car of our own.  It was a quiet morning, so they let us ride for nearly 25 minutes!  Owen loved checking everything out and liked seeing all the boats coming in and out of the harbor.

Afterwards we walked down the street to the aquarium.  This was one of Owen's favorite places....he loves fish and water.  They had a wave action area that he could not get enough of and we got to see 2 different feedings in the main aquarium area and the seal pen.  Owen liked the main feeding because he got to high five the diver through the glass!  We also saw jellies and touched some starfish.

Later we drove up to Deception Pass, which has a beautiful view of Skagit Bay, Whidbey Island, and Fidalgo Island.  There is a bridge that both vehicles and pedestrians can cross.  I tried walking about 1/4 of the way across before the vehicle vibrations freaked me out.  Owen wanted no part of it at all!

That evening we found a great seafood restaurant, Ivar's, in a city right on the water, Mulkiteo.  There's a ferry that runs right off the dock there and we enjoyed watching it while having dinner and walked on the dock after we were done.

On Tuesday, we went to Everett pier to catch a boat for a whale watching tour.  We whizzed past Whidbey Island and saw 2 bald eagles, 8 CA sea lions, and 2 different gray whales.  Watching the whales spout and then seeing their of the most amazing sights I've ever seen!  Owen loved being on the boat and he was so excited to see the sea lions.

Bald eagles!

We have a spout!
Still spouting
Tail has flapped over
Whale tail....amazing creatures!

After some lunch, we decided to head to the Boeing Future of Flight center.  You can take a 90 minute Boeing factory tour, but Owen was too short (there's a height requirement!) and we figured it might not be something he would like.  Instead we were able to check out all the exhibits, including an old airplane pilot area.  The coolest thing was heading to the viewing deck on top of the building.  We randomly happened to be there on the day they decided to send off the "Dreamlifter", the world's longest cargo loader.  It was pretty amazing to be there to watch it take off!

We loved Seattle and that part of Washington.  We enjoyed checking out the city and visiting with some new friends.  I loved crossing off another state and now I have four left to visit while Owen has now visited 23 states (AZ, CA, CO, DE, FL, HI, IN, IA, KS, MD, MI, MN, MO, MT, NE, NV, ND, OH, PA, SD, WA, WI, WY).  At this rate, he'll have all 50 visited by the time he finishes high school!

Mt. Rainer on the way home!

Wednesday, March 2, 2016

"Check Yourself Before You Wreck Yourself"

My son is "mentally retarded".  There.  I said it.  I've heard it and read it since he was born.

He is smaller than his peers---he's still wearing 4T clothing and he's almost 7.  He was 2 years old before he took his first steps.  He does not drink out of a straw.  He does not speak.  He has a very difficult time with writing.  He's on the lowest reading and math levels of the peers in his 1st grade class.

He is slower than his typical peers.  That is what it means to be "retarded" be slower.

It doesn't mean stupid. 

He loves books and is always trying to point out the words he knows.  He recently started doing that with menus and papers.  He enjoys coloring with markers.  His favorite place to be is outside on a swing or a slide.  He likes meeting people and spending all day with his classmates at school.  He plays basketball every day when he gets home from school after going through his routine--hang up coat and bag, put shoes away, give Mom homework folder, use the restroom.

Sounds pretty much like what every other 1st grader is doing, right?

So why would you call him a "retard"?  Why would you take that word and make it mean stupid?  It doesn't.  He's not.

And don't say "I didn't mean it that way".  How did you mean it?  "My hair looks retarded today."  "That book was so retarded.  Why are you reading it?"  "I'm so retarded.  I forgot we were meeting today."  Put the word "awful" or "silly" or "bad" in those sentences.  See?  Make sense?

Retarded  Stupid    

If you want to say your hair, yourself, your boyfriend, your homework, your car is stupid.......just say stupid.  Or a million other words in the dictionary that would make better sense in this case.

Yes, it's 2016 and I'm not trying to be the word police, but seriously, just don't use the R-word.  My son is not a joke.  His disability is not a joke.  He's a person, just like you.  
Take the pledge to use the new R-word:  Respect.  Make a commitment to yourself and others that you think before you speak.

My ridiculous hair and my fabulous son thank you.

Wednesday, February 3, 2016

A Big Milestone

Owen loves basketball.  He will drop everything to watch it on TV.  On Friday nights, we will usually go to the gym to shoot hoops for an hour in the evening.  Owen got a basketball arcade game for Christmas and we go down to the basement every day to play it.  He's getting really good at making baskets on his own and he's scored a record high of 16 points on his own.  He loves playing the basketball games at Dave and Buster's and will usually spend all of his points at the two different hoop games they have.

But he's never been to an in-person basketball game.  They are loud---cheering, yelling fans, a pep band, the whistles, the groans from the crowd, the buzzers.....oh the buzzers!  He's done a few baseball games and a lacrosse game, but they're outdoors where the sound doesn't reverberate like it does in a closed gym.

Recently we bought him a pair of Bluetooth headphones to wear when he watches his Kindle because we got tired of him messing with the volume.  These have limits on volume and he can't watch without them because of the way I set up the connection.  It makes life functional again.  He doesn't mind the headphones at all.  He likes them.  He knows they are his.

So I bought a pair of heavy duty, noise canceling headphones.  I had him wear them around for a little bit of time just about every day.  And then about 2 weeks ago, we found an afternoon basketball game at CU in Boulder for cheap and we thought, let's just give it a shot.  If he hates it, we'll leave and know that now is not the time, he is not ready.

I brought those blue headphones and after we went to the bathroom, I put them on him before we walked to the bleacher seats.  He saw the men's teams warming up and ran down the stairs, signing ball.  We picked a seat so that he could see everything.

The mascot getting the crowd excited
He loved it.  I mean, really loved it.  He wore those headphones with no problem.  He took them off once and realized how loud it was and right back on they went.  Owen cheered, he danced, he clapped, he laughed.  He got a poster with the schedule on the back that he totes around the house, pointing to the player on the front, asking "ball?" all.  the.  time.

Watching warm ups with Dad
This game is intense!
I'm so excited for him.  It's a new experience for him and it's so fun to see how much he enjoys it.  We can't wait to take him to another basketball game!

Wednesday, January 13, 2016

"Born This Way": A Season Review

I waited until the entire season finished before I sat down and really collected my thoughts on this show.  For those who don't know, "Born This Way" was a 6 episode series on A & E that followed the lives of 7 young adults with Down syndrome.  They were all based out of the L.A., California area.  Each person brought a uniqueness to the show.  The format was heavily modeled on "The Real World", as both shows had the same producers.  The show also relied heavily on parental interviews, which has caused some criticism by others, but I actually enjoyed that.

First I have to say I loved this show.  I was excited when I heard about it and I'm glad it's being renewed for a 2nd season.  There are many things I liked about this show, but I admired the parents and cast members for letting us at home watch them, as inevitably they had to know there were going to some pretty serious reactions by others in the Down syndrome community.  What I saw were what I would call above average young adults with DS talking about their feelings, their hopes, their dreams.  They are funny, emotional, have fears, want to have close connections to others, want to have love in their lives.  They are just like the rest of us.

Their parents seem very involved in their children's lives and want them to experience life, even if there is some fear there.  I have read elsewhere that others think the parents were too involved in this show.  But I liked hearing from the parents--they have the same concerns I do.  They have the same love for their children as I do for my son.  I took many of their words to heart--you need to show your child how to be independent, you need to give them a chance to do things on their own even if you're afraid.  You need to talk to them about the big stuff--dating, sex, marriage, living on their own.  You need to prepare them for that.

The scene that hit me the most was when all the parents were at a seminar talking about planning for a time when they won't be around and how their child will manage that.  That left me in a puddle of tears and I had to walk away from that episode for a bit.  This is a tough thing for me.  Owen has no siblings and for a second I wondered if I should have thought about that more carefully.  I only wanted one child and I love the one I have.  For me, I know adding someone else wouldn't be because I wanted another child, it would be because I felt I should for Owen and that's not fair to anyone.  It was hard to watch John's 2 sisters say, "we will take care of him", knowing that Owen doesn't have that kind of family support.  Solito and I are lucky to have several friends that are like family to us that have said we will take Owen and we will manage his finances.  We have our documents in place should something untimely happen.  But that episode cut me to the core.

What I really liked to see were the castmates' personalities shining through.  John, the rapper, is a dude I want to hang out with--he had me laughing the whole time.  Cristina is very sassy and ribs her parents and brother very well with her humor.  I liked Megan's sense of business and carving out her own niche in life.  I related to Rachel a lot, I saw some of myself in her.  She cares about people and she is looking for love.  She is a good friend and is very serious about her job.  I would love to see more of the cast members at their jobs and socializing with friends, especially those without Down syndrome.

Do I think Owen was represented in this cast?  A little--he has a big personality and boy does he love the ladies.  But he's non-verbal and the cast for the most part spoke quite well, in my opinion and I think that's a concern for me.  Can Owen have friends, a girlfriend, hold a job in the future without people disregarding him because he does not speak?  I don't know.  We aren't there yet.  What I do know is that this show has given me a lot to think about.  How do I work every day towards an independent child that will be an adult?  How do I manage my fears?  How do I cope with what society says about my son and what I hope he can achieve?  How do I let him lead me to what he wants to do and not make his life about me?

I look forward to Season 2 and all the new thoughts I'll be left to ponder!

Thursday, January 7, 2016

When a Community Isn't a Community Anymore

When Owen was born and we got our surprise diagnosis, I began looking for other parents to talk to, learn from, and share with.  I found a lot of those people online and on blogs.  I needed to read their experiences and emotions to understand my own feelings.  When I started blogging nearly 4 years ago, I thought I found a place where I could connect with other people raising a child with Down syndrome and other disabilities, where we could share our common experiences and celebrate milestones and joys.  And for a long time that was true.

But recently I've noticed a shift.  I don't know when or why it started to go this route; I couldn't really pinpoint any specific thing that made these changes.  But I've seen parents skewered for voicing opinions that are deemed not popular.  I've seen campaigns against others that do something different to celebrate World Down Syndrome Day.  I've experienced people act like total know it alls when they've got an infant and really have no experience on walking the inclusion route in elementary school but yet are telling me what I should be doing.  Recently I've read absolute hatred spewed about the TV series "Born This Way".  It all bothered me so much that I took some time away from social media and pared down my "friends" list on Facebook because I decided there are some voices that I simply don't need to hear.

The last few days I've seen quite a blow up over a website, The Mighty, where complaints over the writing, the writers, and the topics have driven some in the disability and blogging community to wage a war against the website.  I've been following the conversations and listening to all sides.  But when a group of individuals--some with disabilities, some without---decided that they had the right to make a list of rules that tells the parents of children with disabilities what we can and cannot say, can and cannot write about, and can and cannot post on social media, I am no longer listening.

I absolutely respect that I am not a person with a disability.  I don't know what it's like to have one but I am raising  person who lives with one every day.  I see it on a daily basis.  But according to this group, I'm not allowed to talk about it.  I'm not allowed to express joy when he does something that he's been working on for a long time because that might be seen as inspirational to someone else and that's not OK with this group.  They say that I'm not a voice for my child, that I don't speak for him.  Well then, please tell me who speaks for him?  He is non-verbal.  Do I put words in his mouth?  No.  Do I translate for him when he signs or gestures?  Absolutely.  If I don't, no one else will.  So please, tell me again that I'm not his voice.

Frankly I wonder how the disability community gets anything done that is positive and forward progressing when all I see is bickering, nit picking, and attacking the very allies that want to help and want to see changes in health care, education, employment, and social services.  All this does is continually divide the community and makes me  want to have no part of it.  When people are bullying others into "you must think my way or else", I see very little of the community that I originally joined.  And it is not one that I want to be a bigger part of any longer.  I will focus on my child, his life, and not worry about what anyone else thinks.  I won't be bullied into silence, compliance, or following the crowd just because someone said so.

They don't make the rules for me---Owen does and he always will.

Tuesday, January 5, 2016

Keeping Up Traditions

One of the things I love most about the holiday season is Christmas light displays.  We had a whole bunch of places we would visit at night during December when we lived in Minnesota.  Not knowing what to expect when we moved, we did some research to find where the best displays are in Northern Colorado and we have found some great "replacements" for our old MN haunts.....not better or worse, just different.  So we took some evening and winter break time to find our new holiday traditions....Colorado style.

There's a family that calls themselves the "Greeley Grizwalds".  Their display is synchronized to their own radio station.  It's a cool display.

The Denver Zoo has a display called "Zoo Lights" that runs every night through new year's.  They have coordinated music at all the displays, like "I Want a Hippopotamus for Christmas" that plays when you walk by Santa's sled led guessed it, hippos!  You can even ride the carousel, which Owen did twice and he even decided to ride on an animal, a big first for him!

Down in Larkspur, near Castle Rock, at the Jellystone Resort, they put on an impressive light display complete with music that highlights each scene.  The best part is at the end with an illuminated arch that changes color and dances along to the music.  We opened the moonroof on my SUV so that Owen had full view of the show and he laughed and clapped the whole time.  He loves the lights so much!

We loved Rice Park in St. Paul with all the lighted trees and I was so certain we would never find a replacement.  But we found something similar in the town square of Greeley at Lincoln Park.  It's a cute little town that has a model train museum that Owen loves.  It was the museum that he got his 2nd sit down with Santa at the night trains event, just like the one we attended last year in St. Paul.

A local botanic garden that has activities for kids, hosts school field trip, and grows food for the local food bank puts on a free light display every year.  Most of the display are garden, bug, and food themed.  It was gorgeous.

And of course we did neighborhood tours, so here are a few of our favorites.

Lastly we went to the Denver Botanic Gardens "Blossoms of Lights" display.  That place is gorgeous and I can't wait to see how it looks in the spring and summer.  We are getting a membership, pronto!

It's been great exploring our new home, finding some holiday spirit and creating new memories.