Wednesday, November 11, 2015

Working Hard

Sometimes when we take a break from therapies, things happen.  Sometimes those things are BIG.

When we moved over the summer, I had already decided to focus more on speech when we started therapy back up.  It's clearly the thing Owen struggles with the most and right now it just needs a bigger focus.  So we have taken a break from occupational therapy (OT).  We are constantly reinforcing things that Owen should at least attempt on his own--using the bathroom independently from start to finish, putting on his clothing/shoes/jacket, hanging up his school bag and putting away his jacket/shoes, using his fork and spoon correctly on his own, holding his pencil the right way and writing his name/spelling words/worksheets.

Things take time to develop.  We work at Owen's pace.  Every day he practices the things he needs to learn that will be with him his entire life.  We know he wants to be an independent person as much as we want him to be one as well.

He can put his jacket and school bag on.  He just conquered his shoes....although we need to work on getting them on the right feet and to fix the shoe tongue instead of stuffing it down into the shoe.  He chooses his own clothing and can get most of it on and off.  He is zipping up his pj's at night.

But socks.......oh those detestable socks.  He just couldn't get them.

Until now!

Owen has been eating independently since he was a toddler.  We taught him how to use an open cup about 4 years ago.  He eats sandwiches now.  He likes a really good variety of food.  He is a restaurant aficionado and enjoys making choices from the menu or from his iPad.   But he was still having trouble controlling his movements with his fork and spoon.

Until now!

He still has work to do.  It's all about refinement and making it a commonplace activity that he doesn't have to think about it.  So we'll continue to work on it at home because these are the skills he needs.   I'm not sure we'll have an outside OT session right now because our schedule is pretty tight in the afternoons, but at least I know we are getting somewhere at home with all of our practice.

Wednesday, October 28, 2015

The Owen Effect

We've had some big projects going on at our house for about 3 weeks.  We needed to have our master bathroom partially redone due to a water leak, so our bathtub was removed, drain moved, new shower with new tile installed and new flooring as well.   We also decided to remove a small pond in our backyard that was very worrisome with a little boy who likes to play in any water he can find.  Our yard was relandscaped so that we can fit Owen's playset back there and actually enjoy the space that we have.

So we've had some workmen coming and going these last few weeks.  They typically come around the time Owen gets on the bus for school and they are here for another hour or so after he gets home.  Talking with them, I've learned that they don't know anyone with Down syndrome and when I explained that Owen is unable to talk to them, they have expressed complete wonder and asked if that is hard for me.  Oh.....they have no idea!

But little by little, Owen has won them over.  Every morning he gives out waves and high fives to the guys, who wave to his bus as it drives down the street.   When he gets home from school, they come out and greet him, ask him how his day was and readily accept more high fives.  Owen even gave his first fist bump to one of our tile guys.

Owen wanted to see what was going on in our bathroom and one of the guys showed him the tiles, the grouting tools, and the spacers that go between the tiles to set them correctly.  He and Owen talked about O's car collection and how much they both like Buzz Lightyear.

It's amazing to me the effect Owen has on people, usually people who have no clue about Down syndrome.  Owen loves meeting new people and I enjoy seeing the effect he has on them--they learn, they now know someone with DS, they understand that even though a person might not speak verbally that doesn't mean he has nothing to say and there are lots of ways to communicate.  I'm not to going to say that they are "changed", but I'd like to think that they think a little differently about someone like Owen, should they meet someone with DS or a disability down the line.

When our projects wrapped up, one of the landscapers (Owen's favorite) said to me, "you know, there's just something about Owen that makes you want to get to know him.  He's a cool kid."  And that, my friends, is the Owen effect.......making friends wherever he goes!

Wednesday, October 21, 2015

1st Grade Field Trip

One of the things I like most about being a stay at home parent is the opportunity to be involved with Owen's school.  Last year I spent a lot of time in his general education classroom, reading to students, working the holiday parties, and going on field trips.  I also like being involved because with Owen being non-verbal, I don't get reports about his day and I don't get to hear from him who his pals happen to be.  Getting to go on the field trips gives me a better glimpse into his day and how his classmates see him.

2 weeks ago Owen's 1st grade class took a field trip to a local garden center, complete with a children's garden and a garden where all food grown is donated to the city food bank.  His class is studying the life cycle of plants and how seeds grow, so a trip to the garden made a lot of sense.  I got to meet one of the aides who regularly works with Owen and Owen's 2 classmates with disabilities (one with DS, the other has Autism).  We got to ride the bus, which is always an adventure with little kids  They were so excited to be on the bus and they love to talk.   I learned a lot about Fancy Nancy books and the boys schooled me on fart and knock-knock jokes.

Once at the gardens, I was assigned two girls from Owen's gen. ed. class and Owen as my group.  Both girls held Owen's hand as we walked around the various plants, made a seed bracelet and looked for various types of food.  We had a nice picnic lunch where some of Owen's dude friends demanded to sit next to him.  Far be it for me to stand in their way....I sat a couple of rocks away!  :)

We had some time to check out the children's garden more where there was a model train with a working tram and there was a water feature with a hand pump.  Everybody had to take their turn with the hand pump.  The chaperones had to remind the kiddos not to climb off the bridge over the pond, but overall, the kids were pretty well behaved.  I barely had to help Owen at all except in the restroom.  He's turned into a pretty independent little guy.  He had friends call him over to play in the water feature.  And when a bunch of them were playing hide and seek in the little hut in the children's garden, they came to find me to tell me that Owen was covering his ears and they were worried that it was too loud in the hut for him.

It's such a blessing to see how well Owen is blending in with his 1st grade class and how they already care about him.  With the move, I was worried that it would be hard for Owen to make new friends.  But when a little red headed boy named Jack came over to me to proclaim "Owen is my good friend!" before we boarded the bus, I knew that Owen had this school and friend thing in the bag!

Monday, October 12, 2015

New State....New IEP!

With our big out of state move, one of the things we knew that would need to happen is a new IEP.   His new team didn't want to do the IEP right away because they wanted to get to know Owen a little bit and figure out some his strengths and things that he needs to work on.  I appreciated that they wanted to learn about Owen in person rather than what is written on paper.

So they spent the month of September getting to know Owen so that they could create goals in academics, self management, social/emotional, OT, and speech.  One thing that I really like about Colorado is that for every goal listed for the general education classroom, they have corresponding ones for those students who have IEPs.  Essentially it is a modified goal that helps keep the special education students in the general ed. setting as much as possible because the work is set up to be on that student's present level of performance.  This is something that every state should have, but they don't.  I found them online when I was researching how Colorado handles IEPs and special education students before we moved.

Our IEP went off without a hitch.  I wasn't nervous or anxious.  I have gotten such a good "vibe" from this team from the very start.  They were quick to help us get Owen set up for school and they have listened to all of our suggestions on how to get Owen to work and what motivates him.    The SLP in particular is really creating good goals for Owen in terms of using AAC in the classroom and wanting him to sequence his words and sentences correctly in what is considered actual language.

2 things that stood out to me at the of the 1st grade teachers (Owen's class has an AM and PM teacher) stated that Owen does a good job at staying on task just as much as his gen. ed. peers and that she really wants to build in more time to work with him in small groups.  She feels that she has a good idea about which groups will be best for Owen now that they are a month + into school.  It's nice to hear a gen. ed. teacher so enthusiastic about working with special education students.  The other thing I learned at the meeting is that Owen loves art this year.  He HATED art last year.  He wouldn't even try.  This year?  He's coloring!  In his free time!  This art teacher apparently is very much into modifying art projects for special education students and is very eager to do so.  Sometimes a good teacher makes all the difference!

And the last thing we heard leaving the meeting was a story about Owen eating lunch.  The first week of school he had a very hard time eating in the cafeteria....very noisy and overwhelming for him.  So he ate his lunch in his special education classroom.

The second week of school he began sitting with his classmates and having lunch in the big cafeteria.
He then discovered that students from other classes ate there too and he decided he wanted to sit with the "big kids" = 5th graders.  I asked if that seemed OK with the 5th graders.

His spec. ed. teacher said they call Owen over every day.

They save him a seat.

He gets high fives from the whole table.  

He is included, he belongs.

I couldn't be happier.

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!