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.

Well.......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!




Saturday, October 25, 2014

31 for 21: #25--Heart Update

Yesterday we went in for Owen's cardiology appointment.  It's been 2 years since our last visit and while it's always nice to see Dr. Rios because he's a nice guy, I never look forward to this appointment.  There's always this fear that he's going to say that something is wrong with Owen's heart and a surgery is needed to correct it.

I was impressed with Owen's direction following from the start:  the nurse needed to weigh him and check his height.  He had his shoes off before we even asked and he stood still for both measurements.  We were easily able to get his pulse ox (yay for a 100 reading!) and his blood pressure (normal range) as Owen just sat and listened to the nurse.  

We did need an ECHO done because it's been 2 years.  I brought the iPad and a DVD with me to make sure Owen had something to watch while the tech did his work.  The tech was an easy-going guy, who let Owen look at his machine before he needed to lay down.  Then Owen just climbed on the bed and laid down........no fuss, no muss!  I held up his iPad and we watched an episode of "Elmo's World" while the tech got all the images he needed.  Owen didn't even flinch when the cold jelly had to be put on his chest area.  

When Dr. Rios came in and had a big smile on his face, I knew everything looked good.  He listened to Owen's heart some and explained what he saw on the Echo--good, healthy, growing heart; minor leakage which is something he will always have.  No restrictions, no medications, no visit for 2 more years!  

Earlier in September, I actually forgot all about Owen's heart day on Sept. 3.  I know that might sound crazy that I forgot, but I truly did.  It was the second day of school and I had so many other thoughts invading the space in my head that it escaped me.  And in a way I'm glad it did.  I'm glad that instead of the worry, anxiety and wistfulness I normally feel on that day, I got to feel some joy and happiness about my little boy heading off to a full day of school.  Because that means he has been fixed--his heart is working correctly and he is able to enjoy his life without that worry clouding it over.

Dr. Rios said something interesting to me:  "Whenever I see Owen's name, I think of a little baby, so to see him now is a bit of a shock."  Dr. Rios saw me in my darkest moments when my little baby was being carted off for a major surgery, one in which I was so afraid that he would never be returned to me.  It makes me so glad for Dr. Rios to see him now.......a healthy 5 year old that is more than willing to offer him a hug and a high five.  These appointments will never be easy for me; I will always be anxious and worried, but I am forever grateful that Owen's heart is in very, very good hands.

Chillin' with my iPad
No worries, Mom, I've got this!



Friday, October 24, 2014

31 for 21: #24

"Ghosts" from Halloweens past................

2009--my little pumpkin
2010--a gentle lion
2011--a silly frog

2012--a funny monkey

2013--a fireman at your service
So what will this year bring?  You'll just have to wait until next week, but if you know anything about Owen, I'm sure you can hazard a guess!  :)