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 nearby...boo) 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.

Climbing...no help needed

Loving the giant tube slide

Trains!

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 behind........it 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

Goodbye.........Hello

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!

Wednesday, June 10, 2015

Home

When I was growing up, my family moved a lot, mostly due to my father's naval career and attending both undergraduate and law schools.  We moved so often that I kept my very favorite things in a box in my closet, never unpacking it because I was certain we would move again.  I have shared rooms with sisters, had a room of my own, lived in a basement, lived on the third floor, shared a driveway, lived near a highway, in a trailer park, on a naval base, near a golf course, in an apartment, in the suburbs.  Probably the only place I haven't lived is in a big city.....I've lived near them, never in them.

Because we moved so much, I never truly felt like any place was considered home--that feeling that you are settled and comfortable.   That didn't happen until I went to college.  I loved Saint Mary's College the second I drove onto campus for Accepted Students Day during my senior year of high school.  The buildings and architecture had the Gothic, traditional feeling that I love and the tree-lined lane was breath taking.  Once I got over my freshman 1st semester jitters of trying to fit in, manage courses, and make friends, the feeling of being settled and comfortable took over.  By senior year, I didn't want to leave.  I cried after graduation because I knew that there was a chance I would never feel that way again.  I did, of course, but you couldn't have explained that to my 22 year old self at the time.

This past weekend, I went home.  I went home for my 15 year reunion.  I spent the weekend with a large number of classmates, getting to re-know them now as professionals, wives, and moms.  It was probably one of the most gratifying weekends I have had in a long time, outside of spending time with my own family.  I got to room with one of my very best friends, Lori, something we didn't do in college because we knew that we needed our own space at that time.  We laughed, we cried, we told "do you remember when...." stories, we ate mediocre dining hall food again, we went to our old haunts, we watched our class video and couldn't believe how young we looked, we walked the halls of the dorms in bare feet like old times, we met some of our classmates' beautiful babies and young children.  I loved walking around campus and seeing the beauty that I just didn't take in during my time as a student on campus; it was always there, but I just didn't have much time to fully appreciate it.  Reunion gave me that time to realize how much SMC had an impact on me and shaped me into the person I am today.

At the end of the weekend, I was exhausted and happy........happy to have been home and happy to be going back home to my life now.

Lori and I took the Bell Tower Tour
Best picture of the weekend!
One of the most peaceful places on earth:  the Grotto at Notre Dame
Lori, Aileen and I in front of LeMans Hall
Our class won an alumnae award and I accepted it on the class's behalf
Lori and I had a hard time giving Miss Grace back to her mommy, Aileen!
The beautiful masterpiece that is Church of Loretto!

Wednesday, June 3, 2015

Going from 0 to 90

About 2 months ago, I got a phone call from Owen's special education teacher, S.  She said, I think he's ready to move to real underwear.  The team is ready to give it a try.  He was going on schedule at school and at home and there were very, very few accidents happening.  We were still hit or miss with those pesky bowel movements, but I figured it was worth a shot, especially if the school team was on board.

These last 8 weeks have been life changing.  Really.  We immediately got rid of all diapers and pull ups, except for one bag of night time pull ups.  He is staying dry 4 out 7 seven nights now, which means we find ourselves recycling those pull ups a few nights in a row.

I went out and bought a bunch of packages of undies, figuring if there was a really bad accident, we'd just toss the offending undies in the trash.  I've thrown away 3 pairs total to date.  He might have TOO many pairs of undies now!  But he does have his favorites.......Superman, Spiderman, Buzz Lightyear, Thomas.  He picks his own undies and clothes out now each day.  I think it's good incentive because he wants to wear them so he keeps them dry.

The whole BM issue?  No accidents in nearly 3 weeks.  He goes every night after dinner.  He even tells us probably once a week that he needs to go take care of business.  I haven't used a diaper wipe in 3 weeks.  I have 5 packages sitting in my linen closet unopened.  I may need to sell them.

Owen has gone from 0 to 90% potty trained since the school year started.  He's been working on the whole concept since he was 3 years old.  He finally gets it.  He knows what he's supposed to do in bathroom and how he's supposed to do it.  It wasn't anything magical, there were no treats, stickers, movies, shows, etc. involved.  He doesn't care about rewards.  But he does care about routine and he cares about getting to do things like go to class with his Kindergarten friends and go outside to play ball.  He knows that he is expected to use the bathroom before activities, before going somewhere, and before getting screen time on the iPad.  Those things are his motivators.

It all finally clicked for him.  I think we are on our way to being fully trained, day and night, very soon!

Wednesday, May 20, 2015

The Things He Knows

I went to a children's mega sale recently.  I wasn't really there to buy clothing so much as I was there to buy books, Level 1 Readers to be exact.  Owen has been obsessed with books since he was an infant.  Both Solito and I are readers.....magazines, city guides, novels, historical fiction, maps, mystery novels.....we love it all.  There are books everywhere in our home--the coffee table, the kitchen table, the car.  Owen has 2 book slings, one in his bedroom and one in the living room and he has 2 bookcases in his closet filled to brim with books of all kinds.

Owen has shown a big interest in the Level 1 Readers for awhile now.  He likes more of a story, he likes seeing the punctuation, and running his finger along the words as we read.  We do a lot of point and show--point to this particular word to show me you know it.  His sight word vocabulary is getting quite good and I am constantly impressed with how many words on the other Dolch lists he knows now.  His teacher even started him on the 1st grade reading curriculum about 6 weeks ago.  I couldn't believe it when she told me that!

But there are other things he knows that I don't know that he knows until he shows me.

We were looking at a new to us book called "Take Me Out to the Ballgame" that is about the World Series in 1947, set to the lyrics of the song.  It's beautifully illustrated and it's very fun to look at all the pictures on each page.  One of the pages near the beginning of the book caught Owen's eye.

He kept pointing to the American flag and signing the word "talk".  I had no idea what he was asking me to do.

Then I watched his little hand go over his heart and I realized that he wanted me to say the Pledge of Allegiance.  I forgot that they do this every day in Kindergarten.  His K teacher said he knows exactly what to do and stands with his classmates every morning facing the flag.

So I started reciting the Pledge and he stood up!  And then he signed more and made me recite it 3 more times while he stood with his hand over his heart just like he had been taught at school.  Every night for the past week that book has been on his reading agenda and every night like clockwork he demands that I recite the Pledge while he stands.

The things he knows......that I don't know that he knows........what else is hiding out in that brain of his?


Thursday, May 14, 2015

Apraxia Awareness Day 2015

So apparently like everything else in the world, there is an Apraxia Awareness Day and for 2015, it is today.....May 14.



I think there are lots of people who don't quite understand what apraxia is, so I'll do my best to explain it and then talk a bit about how it personally affects Owen and his speech process.

There are 2 kinds of apraxia:  childhood apraxia of speech (CAS) and apraxia of speech in adults, which is often caused by a tramatic brain injury or a stroke.  Apraxia in general is a motor speech disorder.  A person diagnosed with this disorder has trouble planning their speech; they often know exactly what they want to say but cannot get their brain and their mouth/tongue/lips/oral muscles to work together to form the verbal output.

When a child is learning to speak, they get input from those around them with regards to how they are forming their words and sounds.  They often listen to those around them to hear how sounds are made and as infants they try to repeat those sounds back to their parents or other caregivers.  We know that children start with what are considered easier sounds to make--b, p, d, m--and then add harder sounds and eventually more syllables to form words.  As they practice this skill, it becomes less and less difficult to replicate and stored in the brain to be called up whenever necessary in conversation.  Children with CAS are more likely to struggle right here in the forming of sounds and syllables.  They likely never make those "files" in the brain that become automatic.  No one is sure why that happens, but most professionals in the speech therapy field believe that there is a large neurological component to CAS and that the brain and the oral muscles have a disconnect.

Another important piece of a CAS diagnosis is wide gap between receptive language (ability to understand language) and expressive language (ability to produce verbal sound).  Children with CAS tend to have a fantastic receptive language and truly understand the conversations around them.  Their expressive language is severly delayed, often by years, as in a 7 year old that can only make the sounds that would typically come from a 6 month old infant.

Diagnosis of CAS can be tricky, first because there is no one specific testing platform that can provide the immediate designation of CAS.  Even leading SLPs differ in their agreement with certain tests and the diagnosis itself.  There is specific training an SLP can take in order to be a specialist in the field of CAS and if you suspect that your child has it, it is important to seek out an SLP with that training.  There are specific techniques used to encourage oral muscle and motor skills in children with CAS.  Most diagnoses have several testing components involved, which include an oral-motor assessment (looking for signs of weakness in muscle, jaw, tongue, mouth), melody of speech assessment (seeing how a child uses syllable stress and intonation on words) and a speech sound assessment (checking out how well vowel and consonant sounds come across as well as any syllables and sound combinations).  Having difficulty in any one of these areas can lead to a speech disorder diagnosis, but having more than one of these issues typically leads to a CAS diagnosis.

Typically an SLP will not diagnose a child younger than 3 with CAS.  It is too difficult at young ages to determine CAS, especially if a child does not have a large expressive vocabulary.  For this reason, many SLPs will diagnosis and treat young children with articulation disorders and work to find improvement for them.  As a child becomes school age--5 or 6 years old--a CAS diagnosis is more likely to be determined because a certain level of speech production is expected by that time in a child's life.

What does CAS look like in Owen?  He wasn't formally diagnosed with it until he was about 4 1/2 years old.  His private SLP wanted to give him extra time because she has worked with many children with Down syndrome and with boys in particular, she knew that they often take longer to work on speaking.  A lot of that has to do with the fact that boys tend to be later speakers in general and Owen has always been a gross motor seeker.  He'd rather spend his day climbing up ladders than working on the perfect stream of words.

Once she suspected CAS, she began with the inventories I mentioned above.  She noticed lots of weakness in his oral muscle and tongue.  He would often have a hard time moving his tongue in the demonstrated ways during a therapy session or he might do it 1 out of 5 tries correctly.  Some of the exercises we work on at home involve moving his tongue side to side and touching the tip of his tongue to his lip.  These are necessary in order to form syllables which become words.

Secondly his intonation on sounds and syllables was totally off.  One day he would be able to make an m sound and then next time he was asked to replicate it, he couldn't.  His speech sound assessment was all over the place; again he would have certain vowel and consonant sounds one week and the next week he would struggle to replicate them one time.  His m sound in particular has come and gone over the last 2 years more times than I can count.  

Practice and repetition are big components to therapy practices for CAS.  It is important for a child to nail down the beginning sounds of b, p, m, d and then add vowel sounds to them.  We practice with mirrors and various word combinations all the time.  The more you practice, the better the sound and the facial recognition of the sound become.  Again, this is about helping the child make those sounds permanent in their repertoire of speech.  The foundation of sound has to be set before you can expect things like full words or sentences.

And that is why CAS is a tough diagnosis.  It takes a lot of work and for a long period of time you might not see any improvement or change.  It is also one of the reasons that lots of parents move their children to an AAC--augmentative and alternative communication system.  Owen uses his iPad with a specially downloaded app called Dynavox Compass at home, school, and private therapy.  We have pages set up for him for those specific locations that allow him to speak.  There are food choices, book choices, play time choices, and pages of routines like going to the bathroom or asking someone to play with him school.  It provides him the verbal voice that he currently does not have.  It doesn't mean that we have given up on verbal speech, but it does provide Owen with a way to be a part of the conversation and communication around him.

Some resources that you might find helpful if you suspect a CAS diagnosis or would like to discuss one with your SLP:

Childhood Apraxia of Speech Association of North America

American Speech-Language-Hearing Association

Facebook group of parents with children who have CAS

National Institute of Health on Deafness and Other Communication Disorders

International Society for Augmentative and Alternative Communication

AAC Institute

Uncommon Sense--fantastic blog written by a mom whose daughter uses AAC.  In the blog, she writes about their trials and errors with various AAC devices, how to implement AAC, and provides videos of both her daughter and son using AAC in every day situations.

To find a professional SLP with CAS training in your area, go here.

Articles/sites with AAC app information:
http://www.friendshipcircle.org/blog/2011/02/07/7-assistive-communication-apps-in-the-ipad-app-store/

http://assistivetechnology.about.com/od/AugmentativeCommunication/tp/Top-10-Alternative-And-Augmentative-Communication-Aac-Apps.htm

http://www.spectronics.com.au/article/iphoneipad-apps-for-aac

http://www.massmatch.org/resources/aac.php