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!

Thursday, October 30, 2014

31 for 21: #30

As Down syndrome awareness month comes to a close (yes I know there's tomorrow.....but that's for Halloween!), I look back all of the posts from this month and I find myself thinking that Owen is a lot like other kids his age, but he's also uniquely himself.  He is who he is and he doesn't apologize for it--he likes what he likes.  I wish I could be that honest with myself!

I hope others see what I see:  a boy that likes to be outside playing, that likes adventures, that is learning both at home and at school, that likes his friends and his school, that loves his people and his places.

He is living his life.  That is what I want for him always--to live a life that he chooses and that he enjoys.  I think that is what any parent of any child--disability or not--wants for their child(ren).

Do we have challenges and will there be challenges in the future?  Of course, but so do many other families.  I think the important thing is that if people simply have some compassion for others, we can better overcome those challenges.  Understanding a little bit about Down syndrome and how it can complicate what others may perceive as simple is an important part of awareness.  It's that kind of awareness that pushes employers, teachers, and society to work a little harder to incorporate individuals with intellectual and physical disabilities into the world around them.

I do have worries about Owen's future with schooling, jobs, and living on his own.  But I'm savoring this time right now and I'm hoping that all the things we do now and all the things we help him learn will lead him to a very bright, independent, and pleasant future.

This boy has never met a slide he didn't like!

Tuesday, October 28, 2014

31 for 21: #28

There is nothing better on a fall day than playing outside, especially when you know that soon it will be nearly impossible to be outside for several months.  One of the best things about being outside is watching Owen learn to do things for himself......on this particular day he conquered his rock wall (no shot unfortunately!) and figured out how to get himself into the swing and push off.  His joy is evident in the smile on his face.

Monday, October 27, 2014

31 for 21: #27

There isn't a fountain anywhere that Owen doesn't like.  I do think he was hoping he could get in there and take a shower, though!

Sunday, October 26, 2014

31 for 21: #26

Once you're in the Down syndrome community, you meet a lot of people and make some really great friends.  We recently got together with my friend Jamie and her daughter Ella who is 6 and also in Kindergarten.  They live a couple of hours south of the Twin Cities, so it's hard to get together very often.  But the zoo is always more fun with friends!