Monday, January 26, 2015

Embracing Winter

I have officially lived in the Twin Cities area for 6 years now.  This is really the first winter where I feel like I am finally embracing some winter activities and enjoying being outdoors more often.  Having grown up in N.E. Ohio where lake effect snow isn't always pleasant and often involves ice, I never really spent much time outside during the winter.  After college and before moving to the Twin Cities, I lived in Delaware for nearly 10 years where a real winter wasn't really existent and when it did snow, people out there treated it more like "The Storm of the Century" episode from "It's Always Sunny in Philadelphia"---everything is a crisis and there's a run on toilet paper, milk, bread, and eggs.  I am still not sure what everyone does with all that milk, bread and eggs, but at least they can use the bathroom without a hitch!

So this winter seems different to me.......maybe it's because it isn't nearly as cold as last winter, maybe it's because Owen really wants to be outside, but I find myself embracing it more this year.  Owen likes to come home, do his homework, take care of "business" and then put his snowpants and boots right back on to go in the backyard.  I even bought myself some thermal pants to go under my jeans so that being outside and getting cold isn't really an issue.  The biggest change?  I am wearing a hat!  I never, ever wore a winter hat.  I hated them as a kid and would rather freeze my ears off than wear one.  But last winter I found this cool navy blue hat that I adore and it is super warm.

2 weekends ago, we hit the Winter Kite Festival at Lake Phalen.  Owen and I had never walked on a frozen lake before but now we can cross that one off of our bucket lists.  The kites were interesting and fun to watch.  Owen really enjoyed it when kites would swoop down close to him.  I was just glad I didn't fall on my rear end on the ice!

This past weekend was really quite perfect--warmer and the glorious sun was out all day on Saturday too.  It was the perfect time to be outdoors and we hit the jackpot because it was the start of the St. Paul Winter Carnival.  People in MN really do seem to embrace the cold and winter in a way that I have never seen.  The Winter Carnival is just a slice of that embrace and boy, was it fun!  We went to the opening parade, watched some ice skating, hit the Kids' Day at Landmark Center (hello, bounce houses!), and checked out both the ice sculptures and snow carving.

I think the highlight of our weekend though was Owen's very first sled ride.  He has never wanted to try it before and there we were at the snow carving competition.  A huge sled ride, much akin to the giant slide ride you see at fairs during the summer, was set up.  He watched people going down for a bit and then signed please, go and pointed to the sledding.  We thought, what the heck......why not?!  We paid our 2 bucks and Solito and Owen waited in line while I set myself up to capture the moment.  Owen not only waited in line patiently but cheered on fellow riders.  I could hear his squeals of excitement as they came down and the look of pure delight on his face made the ride a complete success!

There are some activities I know that I'm not likely to ever try--ice fishing......uh, no.  Snowmobiling.......not a chance, I'm a scaredy cat!  But we still have one more winter activity to visit and that is a very cool Ice Castle exhibit......can't wait!


Owen desperately wanted that kite to crash on him
Standing on a frozen lake for the first time!
Checking out the ice skating action

Winter Carnival Parade

Landmark Center....such a beautiful building
The Cathedral of Saint Paul 

Owen is getting into his sled
His face says it all
SO fun!
Watching the snow carving was fascinating

Tuesday, January 20, 2015

When Life Imitates Curious George

Last Wednesday we woke up to a coating of snow on the ground.  Owen and I went outside to wait for the bus a few minutes early so that I could brush the snow off the driveway.  I noticed that there were animal tracks all over the place.  I remembered several episodes of Curious George where he investigates animal tracks, so I said to Owen, "Look at the animal tracks!  Remember when Curious George was looking at different animal tracks?"  He came over to where I was standing to investigate with me.  I pointed out where they went and he followed them.  He leaned down to look at them closely and to touch them.

He and I talked about what kind of animal had made the tracks.  He signed bear and dog.  I told him it was probably not a bear because they are big, but it could have been a dog since they were small, although it was likely a small fox.  I showed him how big my foot tracks were and then we looked at his own foot tracks.  I was trying to explain to him big and small, which is a concept he is working on at school.  I asked him to point to a big footprint and then a small one.  He got it right!  I asked him again a few minutes later and he got it right again.  He is getting big and small........finally!

That's the thing that I love about Curious George.  It's a cartoon, it's fun, George is silly.  But in the end, there's always a great lesson and lots of them have to do with numbers, counting, science, comparing, and problem solving.  When I mentioned Curious George's name and animal tracks, Owen's face lit up.  He loves Curious George and often imitates things he sees on the show (in a good way........George does get himself into some trouble!).  He watched the episode where George used a spaghetti noodle to measure a building.  Owen went to his toy bin and found his measuring tape.  He came to me and wanted to measure himself, his bed and a book.

The exchange that morning was surprising to me.  Owen was really interested and he totally understood what I was talking about.  It's not that I underestimated him, it's just that I figured he wouldn't care or wouldn't be able to make that connection between something he saw on TV and something happening in real life right front of him.  Sometimes there is a disconnect there for a person with a cognitive disability.  I try hard to give him lots of different kinds of opportunities--book, flashcards, play activities, iPad apps--to learn concepts.  Some things click better for him than others.  But it seems like Curious George is a good educational helper..........and of course I secretly enjoy him too!

A little selfie action before the bus arrived!

Tuesday, January 13, 2015

Patience and Acceptance

I know lots of people who choose a word at the beginning of the year that they hope to embrace throughout the new year.  Last year I picked a phrase:  we will get there.  It served me well and for lots of things on my list, we either got there or we are getting there.

So this year I'm continuing with the thought of getting there by choosing patience.  Our biggest hurdle right now with Owen is potty training.  We've been at this for nearly 3 years.  It's not easy and it really is about training him to listen to his body cues.  Last year we had just stepped into the world of pull ups.  We were at 15 minute intervals.  Now he is able to wait for 2 hours between trips to the bathroom.  He is rarely wet before we make it there.  The biggest thing that has changed is that he is initiating about 20% of the time that he needs to go.  This is a huge deal for a child that has very low muscle tone!  Our biggest hurdle that we need to conquer is #2.  If we can get him to go on the toilet, he will be day trained and can wear undies full time.  We aren't there yet.  We have had some successes in that arena, but those have been surprises for the most part.  But I am patient.  I know he will do it, it will click, and he will be out of pull ups soon.  I have faith in him and in my patience to get him there.

On the flip side, sometimes you just have to accept that certain things might not happen, no matter how hard you try.  It doesn't mean that you aren't hopeful, but sometimes you have to understand that things just aren't in the cards.  Owen has not made much progress in speech over the last 3 years of therapy.  He is saying some sounds, but they aren't consistent and they aren't words.  I know what he's attempting to try to say, but if you don't know him, you wouldn't have a clue.  His sign language repertoire is large, but he does a lot of approximations that outsiders wouldn't get and he doesn't necessarily use them in conversational style either.

It's been very hard to accept that Owen is likely never to speak.  I have always imagined that one day I would hear his little voice say a sentence, but in all honesty, I doubt that will happen.   I struggle all the time when I see and hear children (some with Ds and some without) holding conversations with their parents and siblings.  As much as I like to volunteer in Owen's classroom, I have gone home in tears afterwards because I've had some interesting conversations with his classmates that I know I won't have with him.

Even harder is that Owen doesn't realize that his experience isn't "normal".  He feels comfortable, for the most part, with what he has to use to communicate.  In many ways that is good that he is OK with where he is at, but I also want him to want to push a little more.  I can see some frustrations when he requests something and we aren't sure what he wants.  We are trying to remedy that with his new school iPad/communication app.  We are learning alongside him how it works and how it can be useful for him to have more meaningful conversations with others.  His classmates are apparently enjoying its use in class, but I think it might be more of a novelty right now for them than anything else.

I DO want him to have something that will allow him the freedom to express himself, be noticed, and be more independent.  I think as a mom I just wished that it would be his own words coming from his own mouth.  It's hard to hear a computerized voice spitting out those words.  I am grateful it's there, but in many way, I wish it didn't have to be.  I ran into a young man with Ds recently at Best Buy with his PCA.  He was buying a new cell phone and the PCA was making sure that the customer service person dealt directly with the young man.  I smiled, watching the transaction and felt very proud of him for handling his own purchase.  I couldn't help but feel a twinge of sadness too because I knew that Owen couldn't do that on his own, although he probably could with the help of his communication app.

So........patience and acceptance.......learning to wait, be hopeful, but also understand if something doesn't work out, that is what I am embracing this year and hoping for some good surprises along the way.

Monday, January 5, 2015

Why I Wish Winter Break Wasn't Over!

I know a lot of parents were doing their happy dance this morning as their kiddos headed back off to school after long winter breaks.

This mom wasn't one of them.

Owen and I had a blast these last 2 weeks and I was sad to see him board the bus this morning.  I have missed him all day and even caught myself watching some Curious George with no little buddy to watch it with this morning.

We didn't do anything particularly special, but just getting to hang out, watch our favorite shows, and go to some places that we don't get a chance to visit because he's in school was very satisfying to both of us.  We hit the zoo and the aquarium at the Mall of America.  We got to meet Dad for lunch a few times.  We visited the library to check out books and a couple of movies (we tried Finding Nemo and Tangled--he enjoyed both of them!).  I got Owen hooked on the movie "Toy Story 3" and now it's his new favorite, so we watched that a couple of times as well.  Several evenings were devoted to our annual drive around and look at Christmas lights and of course we hit Rice Park in St. Paul for its annual light display and to check out the ice skaters.

I am finding that this school year in particular has made me miss Owen during the day.  He and I have been a pair since the day he was born.  I love spending my time with him and it's been very hard for me to give that up.  The one thing that I do know though is that he does love school, so even if I'm sad, it's good to know that he is happy where he is!

And now.........a big old photo dump of our winter break adventures!

At the zoo.......not afraid of the wolf statues any more!
Checking out a very cool shark
A school of fish
O's love of turtles continues
Holiday Lights Tour in Lake Phalen Park
This was O's favorite obsession of trains!
Goodbye, Santa!
Rice Park
Landmark Center at Rice Park
My favorite decoration at Rice Park
Checking out the ice skaters
My 2 favorite dinner dates
Wolves have ears and so do little boys named Owen!

Wednesday, December 31, 2014

Christmas 2014

Yes, I know it's New Year's Eve now, but better late than never, right?!

Our Christmas this year was quiet, peaceful and uneventful......just the way I like to celebrate my holidays.  We attended 8am Mass and went to our favorite neighborhood diner for breakfast afterwards.  Then we headed home to open gifts.  This year Owen was quite interested in tearing off the wrapping paper, although he had a very specific system for opening each gift.  It required that he take off the bow first, then find the spot on the back where I had taped the paper together, and finally tearing away.  Owen became mesmerized by an Incredibles t-shirt and book that he got, which made opening up the last few gifts a little bit difficult.  I need to remember to mark the "big interest" items next year so that they go last!

Owen still doesn't understand the concept of Christmas, why we are giving each gifts or what Santa Claus does, but he does KNOW who Santa is.  If he is looking through a book and Santa is in there, he will point to him and then look at me, waiting for me to say, "Yes, that's Santa!"  What does that mean for the future?  I don't know.  I really don't care if he ever figures out about Santa and the whole present thing.  I can say for certain we'll never have an Elf on the Shelf nor will I push him to understand Santa's story.  It isn't something I personally care about but if he decides for himself after hearing about it from books, TV, and classmates, that's fine too.

The best thing this Christmas season was Owen's enjoyment of the Christmas tree and lights.  I actually put up our tree the day before Thanksgiving which is one of my no-no rules.  But we had watched a Curious George special that morning and he was so excited about George's tree, that I decided to break my rule and go for it.  I'm glad I did.......he loved having the tree up.  He figured out which button on the auto-timer was the on switch and every day he would come downstairs and turn the tree on.  He liked re-arranging the ornaments too (thank goodness for the shatter proof ones I bought last year!).  I know he'll miss the tree when it comes down this weekend, but that just means he'll be very happy next Christmas to see it again.

I hope all of our friends had a very Merry Christmas and The Sumulong 3 wishes everyone a very Happy New Year in 2015!

Our little tree

Bow removal at its finest

What??  An Incredibles shirt?!

Dad was very happy with his Breaking Bad series

Hmmm, I wonder what this is......

Oh man!  It's a Curious George doll!

Mom says I make a good present too

What?  AND an Incredibles book?! 

Oh yeah, more cars for me!

Happy Christmas, peeps!

Monday, December 15, 2014

All Aboard!

This weekend we decided to try out a new place that we had heard many good things about, but hadn't been to yet--Twin City Model Railroad Museum.  One of the reasons for us not going until now is that Owen has not liked trains up until just recently.  When he was 3 and his 3 year old friends were SO into Thomas the Tank, Owen couldn't be bothered with the engines.  I think he just cognitively wasn't there yet.  But now that he is much more like a 3 1/2-4 year old, he wants to take a look at every engine that goes, be it a train, plane, or car.

While doing some searching to find something fun to do on a Saturday night, I came across the special Night Trains event that the TCMRM hosts during the holiday season on Saturday evening.  They turn down the lights and light up the little villages and special holiday trains that encompass 2 separate buildings.  So after we grabbed some dinner, we hit the event just as it opened, which was perfect because it wasn't busy and there wasn't a huge crowd.

We got to look at all the villages and they have great railings with special wooden foot stalls for little kids to stand on and be able to see everything.  When we made it to the 2nd building, we found several trains set up for kids to actually turn on and off and control lights, sound, and exactly how fast they wanted their train to go.  Owen really enjoyed that part!  It was definitely fun to see his excitement as the trains whizzed past him.  One of his favorite things was to look into this little tunnel at one of the train set ups and watch as the 2 trains traveled under the tunnel.

I am sure we'll be back in the future to take in more train action.  Any MN local that wants to go to the Night Train event, they run every Saturday evening (6-9pm; $10 a person for ages 5+) through February.

SO excited for the oncoming train!

Just one of the fun villages set up and lit up

I'm an engineer, I've got this!

Tuesday, December 2, 2014

"Small Talk" Book Review + Giveaway!

Last month I took a little girls weekend trip with my best friend from high school (Hi, Di!) to Charleston, SC.  It was a great little getaway to a beautiful city.  I did, however, have to spend some time in airports that weekend, so I brought Amy Julia Becker's new book with me, hoping I would find the time to read it.

I loved Amy Julia's first book, "A Good and Perfect Gift".  It was one of the first books I read after Owen was born with Down syndrome and I enjoyed it so much that I have given it to several new moms that have contacted me after receiving a diagnosis.  I love the way Amy Julia writes--straight from the heart.  So when I was offered a free copy of her newest opus, I had a feeling it would be a great read.

"Small Talk" is not just about Down syndrome, although A J's daughter, Penny is, of course, a central figure in the book.  This book is more about how talking matters, regardless of who you are talking to.  In this book, A J explores how talking with her children doesn't always resolve a question; in fact more questions are often raised instead.  She finds herself looking inward frequently after one of her 3 children has asked her a question or when one has answered a question she has posed.  While many of her questions and the discussion with her children are faith-based, for me there was still a bigger and broader picture that I took away after finishing the book.

What I found most fascinating about this book is that it really made me *think* about how I talk with my own son.  Now for us, I am the one doing all the verbal talking.  And at various points while reading the book, I did have a few teary moments because I would wonder, will I ever get to ask him that question?  Will he ever answer me in a way that I can understand and that allows him to fully express himself?  Of course, I don't know.....only time will tell.  But what I enjoyed most about this book is the thought that someone like Owen, who is essentially non-verbal, can still provide a meaningful conversation.  There have been so many times when he starts signing about something that is interesting to him and I realize just what is making him tick.  After reading this book, I vowed to become a better listener/follower to what Owen is trying to communicate to me.  I need to make sure I am more in the moment with him and not just repeating what signs I am seeing from him, which can be hard to do when the hustle and bustle of the day often doesn't seem to permit more than that.

I really enjoyed this book and I loved that each chapter started with a quote from some of Amy Julia's favorite books and authors.  Each of those quotes was very thoughtful and echoed what that chapter was going to be about--I found myself often going back to the beginning of the chapter to re-read the quote and take it in again.  I think my favorite quote came from the chapter entitled "Love".
"The beginning of love is the will to let those we love be perfectly themselves, the resolution not to twist them to fit our own image.  If in loving them we do not love what they are, but
only their potential likeness to ourselves, then we do not love them:  we only love the reflection
of ourselves we find in them."---Thomas Merton, No Man Is An Island
This quote reminds me that I must always love and accept Owen for who he is and not necessarily what I want him to be.  I have always said that he is who he is and he should never have to apologize for that.  He should always be perfectly himself, no matter what.

The Giveaway Details:  All you need to do is leave a comment on this post......are you excited to read Amy Julia's new book?  Did you read "A Good and Perfect Gift"?  Did you like it?  One winner will be chosen randomly next Monday (12/8) to receive a copy of "Small Talk". 

Wednesday, November 19, 2014

Trying Something New

Trying something new is hard for anyone.  With Owen because of his sensory issues, sometimes trying new things is especially scary.  I try to know exactly what his triggers are and in most cases, I just stay away from those things.  Maybe that doesn't teach him that trying something new is an important part of life, but it does keep the meltdowns and tears at a minimum.

Solito and I used to go to Dave and Buster's frequently when we lived near Philadelphia.  We had a good time playing games, earning tickets and taking home random prizes like a new rice cooker (we still have it and it works really well!).  When Owen was about 3 years old, we decided to take him to one here in MN and see how he liked it. didn't go well.  He hated it.  He cried, signed all done and headed for the door.  It was clearly too loud with too many sounds and too many lights.  We even tried to show him the basketball game, which we thought he would love since that's his favorite sport.  But, no.....not happening.

So we didn't bother with Dave and Buster's for awhile.  We figured we'd try it again in a few years when maybe some of his issues with noise changed or when we finally got him to wear headphones (which we still haven't been successful with at all!).

Last weekend I went out of town to visit the charming and beautiful town of Charleston, SC with my best friend from high school, Diana.  Solito and Owen were left to their own devices and Solito decided he would give Dave and Buster's another shot.  He took him there right when it opened, which meant there were very few customers and they had the games area to themselves for a long time.  One thing we have noticed with Owen is that if we take him to a place where there will be noise/lights/lots of people when it first opens or be the first group of people there, he tends to be able to settle in and as the noise builds, he doesn't get very bothered.

They had a blast!  They played the basketball game and Owen learned how to play skeeball, which ended up being his favorite.  He even tried a motorcycle game and apparently liked it when he crashed the vehicle (that doesn't speak well for his future driving ability!).  He caught on quickly that you get tickets after each game and dutifully dropped them into his D & B cup.  They had some lunch there and then continued to play a few more games.

I'm so excited that Owen had a good time and I can't wait for all three of us to go together and have some fun.  Sometimes trying something new works out into a great experience!

The cute photo I was sent......he is having a ball!

Monday, November 10, 2014

The 1st Conference

Last week was my first parent-teacher conference in the traditional sense.  Obviously we've had IEP meetings before, but this was our first real check in of the school year.  I rather like the idea of having a conference every so often well before any IEP and got a lot of great feedback.

Besides his special ed. teacher (Ms. N.), I got to meet with O's gen. ed. teacher (Mrs. B.) and his school SLP (Mrs. A.) as well.  The SLP was so excited to see me, she was literally wiggling in her chair.  I was excited after hearing what she had to say--Owen is getting an iPad mini from the district and it is coming loaded with THREE speech apps so that the SLP can chose which one will work the best for him.  Then she will train him on it and it will be sent back and forth between home and school so that we can use it at home too.  This should all happen in the next 6 weeks or so.  She emphasized that Owen is a smart cookie and loves technology so she knows this will be up his alley and she knows how much he wants to communicate.  I can't wait........this is going to be so fantastic!

Mrs. B. had a few funny stories about what Owen likes to do during free choice time with his Kindergarten class.  He likes to check out what everyone else is doing first and then make his choice.  Because he likes some of his gal classmates a lot, he has been choosing to "color" lately apparently (coloring for him entails scribbling with lots of colors, but hey, it's a start!).  His very favorite thing to do still is read books and classmates will often join him and they like to ask him questions to which he replies with signs.  Apparently many of the students are using signs with him which is SO great.  They are trying hard to communicate with O and I couldn't be happier.  I think they will enjoy working with him with his speech app too.  The very last thing Mrs. B. said was that "Owen is well loved" and Mrs. A., Ms. N. and the student teacher all nodded in agreement........I didn't cry right then, but I definitely wanted to!

Ms. N. and the student teacher S. finished up the meeting with me by going over some of Owen's work samples and his IEP goals.  Seriously, I love this woman--she is the very first teacher to ever do that with me this early in the school year.  In past years, that information has always come right before the IEP meeting in April, which I don't find very helpful--too much info and too little time to process it all.  Knowing what I know now, I can focus on things that are more difficult for him--attention span, scissors, art projects, coloring, all the fine motor stuff that he hates.

Some things are paying off.........his potty training is nearly 90% complete.  He still needs help with the clothing process but he knows what to do when he gets on the toilet.  He is not afraid of any public restroom at all.  He is even starting to tell us and his school team that he needs to go.  He will actually stop what he is doing and sign potty and then head off to the appropriate place.  Now if we could just get the #2 thing down, he would be completely trained.  One thing at a time!

He is writing his name almost completely on his own.  He writes lots of sight words and letters with minimal hand over hand assistance.  He is making progress on number correspondence--he knows how many 1, 2, and 3 are consistently.  He knows 15 sight words and a few extra words (Mom, Dad, Owen, car, book).  He knows the sound every letter makes too, which might seem odd for a non-verbal child, but all you have to do is say the sound and he'll find the letter.  He knows the routines in both classrooms and is sometimes an enforcer of them for his classmates if he thinks they aren't following them.  Ha!

All in all, it was a great conference.  I left feeling proud of Owen and excited for what's coming ahead.  He is really thriving in this environment and he has 2 great teachers that I am seriously considering cloning and keeping forever.  Hooray for school!