Tuesday, March 3, 2015

A "Young Athlete"

Last weekend, Owen took part in his very first Special Olympics event with the Young Athletes program.  This is a program that is designed for children ages 2-7 with disabilities.  Ours was sponsored by the YMCA locally.  Some are also done at community centers or community parks/recreation leagues.

I had heard mixed reviews for some of the sessions around our community, so I wasn't sure how this would play out, but since we only paid $10, I figured we didn't have much to lose.  Lots of other sessions are held in the evenings during the week and I have to wonder if kids are pretty much "done" by that time of the day after going to school the whole day for the most part.  Our program is running on Saturday afternoons for 7 weeks, which is nice because it gives us something to do on Saturdays.  The timing of the program at our Y is good too because that's actually a quiet time where the kids won't be too distracted.

Owen is in the program with 3 other children, 2 of whom have Autism, while the 3rd child has Down syndrome.  The coaches, Coach B. and Coach J., are very energetic guys who are also flexible with what the kids need.  Coach J. himself has Asperger's and seems very cognizant of the children's needs.  These were all boys in the program and they needed to run, which is exactly what they did!

They used a great picture schedule to show the kids what they were going to be doing and they kept everything light and fun.  They both encouraged parents and siblings to participate too.  We tried playing with scarves to work on hand/eye coordination, played duck-duck-goose, rainbow tag, and did an obstacle course.  Owen loved the obstacle course the most, but it was fun to see him play duck-duck-goose as well because he loved being tagged and running around the circle.  The kids had good interactions with each other and did really well at taking turns during the games and the parents enjoyed meeting one another too.  Owen, Solito, and I will be meeting one of the families for swimming this Friday and it will be nice for Owen to have another friend to hang out with when we come to the Y.

I am so glad this is working out for Owen and he is on his way to being a true Special Olympian!

Thursday, February 26, 2015

A Swimmer!

A few months back, we started lessons at a new facility to see if the small environment and one on one instruction would help Owen be a bit more focused and learn to progress a little more with his skills.  While Owen did move ahead with some skills, he has hit a bit of a plateau again and we are going to take a little break.  The facility was really nice, clean, with friendly instructors, but our biggest problem was the constant change of instructors.  Just when Owen would get really comfortable with someone, they would leave and we would have a new person for him to get to used to all over again.  I understand that happens, but the #1 reason we came to Aqua Tots was to have some instructor stability and that didn't happen with 6 instructors in 5 months.

I will say that those he got along with really helped move forward with his swimming goals which of course is to be an independent swimmer.  He can float on his back with no assistance.  He is swimming on his own for about 5 feet and he has really refined his jump into the pool which is an actual jump, rather than a belly flop.  He learned breath control and was starting to go under (with assistance) to grab a toy or a ring.  We will keep playing in the pool during our break and let him work on those skills some more.  When we are ready for more lessons, we are going to put Owen in a typical 4:1 class at the YMCA.  It is clear that he likes being with his peers and he does learn from them, so I'm just going sign him up and let it ride!

Happy to jump in
Floating like a boss!
Working on swimming on my back

Thursday, February 12, 2015

IEP Time......We're Talking 1st Grade?!

To say that I dislike IEP meeting time would be an understatement.  I am so nervous, anxious, and worried that all I'm going to hear are negatives or what Owen can't do.  It's not like I don't know what his struggles are because believe me, I do.  And I'm not ashamed of them, but I certainly don't want to spend a whole meeting in a room full of people going over that!

Last year was probably the worst in terms of my nervousness. Brand new school, whole new team, full day Kindergarten and spending time in the general education class.......lots of concerns for me!  How would Owen adjust, would he be overwhelmed and act out, how would his classmates react to him being non-verbal, would he meet any of his goals?  I was just a plain old Nervous Nelly!

We had Owen's IEP meeting last night during conferences.  I had sat down earlier in the week and went over our state standards for math, ELA, and reading for both Kindergarten and 1st grade, knowing that he would likely have goals pulled from both grades.  I went over his last IEP and checked off things that I felt he was capable of doing and could likely be taken out of the document.  I wrote down some ideas about the new goals, how we could tailor them to meet Owen's needs.  Solito and I talked a lot about his motivations and how certain things could be taught to a non-verbal child.  I checked out iTunes, looking for some story making and reading apps that might help him show his comprehension of a story.  I felt very prepared for his meeting.

His team of gen. ed. K teacher, spec. ed. teacher, DAPE teacher (adaptive PE), OT, and SLP were there as was the school principal.  You might think that sounds intimidating, but it wasn't.  We got excellent reports from all involved, everyone starting with Owen's positives.  I think the best thing was that when each person reported his weaknesses, they also talked about strategies we could all use to support him.  It wasn't just a "he can't do this; he won't try this; I don't know what to do with him" conversation......they had clearly thought about what they could do or try in order to help meet his goals.

I think the best conversations came about his general education class time.  Everyone on the team agreed that Owen has really taken to the large group.  He loves being involved with his classmates so much so that when he has to do one on one learning, he doesn't like it.  He has really learned a lot from his peers; they have been very good models in showing him how to do things and how to be a part of the group.  This left me completely floored!  It has always been Owen's nature to shy away from the group and often do things on his own.  Kindergarten has changed him, in a good way.  We do need to find ways to keep him engaged in individual tasks, but that's not a huge deal.

Some of his positives were:  knowing 18 of the 26 Kindergarten sight words (he's close to 2 more, but not 100% there yet); writing his own name and emerging skills of writing sight words; knowing 1:1 correspondence of the numbers 1, 2, and 3; knows 11 colors and 8 shapes; starting to draw the various parts of a stick figure face and body, following directions of simple games; participating in games with classmates; starting to type on a computer board; following all classroom routines with ZERO prompts (huge!!); toileting on schedule with very few accidents and even initiating several times a week.

The plan for 1st grade is to add more gen. ed. class time.  He will continue all specials (gym, music, art, computers, library, recess, lunch) and add in number corner (math session) and science.  He will be spending about 65% of his day in the gen. ed. classroom.  He will get OT, speech, DAPE, reading, and extra math sessions in his special ed. classroom or with the specialists.  His OT will also be coming to art on a more regular basis next year to help him with writing, cutting, and drawing skills, which are by far some of his weakest areas.

We are also going to use his communication app on the iPad in all settings.  He has taken to it quite well and is using at home and at private therapy.  As time goes on, it will become more apparent to Owen that this is his voice and this will be how he needs to frame his requests.  We aren't giving up on verbal speech, but that path is long and hard for him.  We need him to be able to express himself positively and immediately.  This is the best way to do that.

Owen is actually on target with his IEP goals, has met many of them and has shown no regression after any school breaks.  This means that he won't qualify for ESY this summer.  I didn't think I'd ever hear that!  Every year is different, so it's possible in the future he will qualify again, but to hear that your kid is doing a good job is very much music to my ears.  It definitely frees us up to do things we'd like to do on our time schedule.  I have a bunch of summer day camp classes saved that I can look at more closely now and I'll be looking forward to more leisurely days in the backyard with nothing to do and nowhere to go.

It was a great meeting; we came away with excellent goals and ideas for teaching Owen the things he needs to know.  We came up with strategies for helping Owen during one on one time as well.  We talked about various activities, games, and apps that we could use to help him show what he knows because verbally he cannot do so.  It was a good creative session with an excellent team.  The only sad part is knowing that Mrs. B. will not be his 1st grade teacher.  I am confident that he will be placed with someone next year who will be a good fit, but Mrs. B. has just been awesome.  I doubt there is anyone else like her, but we'll try to find one if s/he exists.  Coming away from an IEP meeting feeling satisfied is a new feeling for me, but we are definitely ready for 1st grade next year!


Thursday, February 5, 2015

Un-Childproofing Has Commenced

At one point a few years ago, I truly thought I should have bought stock in Safety First.  I felt like I was going to Target every day to find some kind of safey gadget that would keep Owen from opening something, climbing something, crashing into something, or destroying something.  We were lucky in one sense because Owen wasn't that mobile for a long period of time.  Because he had low muscle tone, it took him longer than a typical baby to figure out how to get on the move.  Every time we had a play date with his friends, I would realize just how many things would need to be made a bit more safe!

Oh but once he did become mobile, we couldn't move fast enough to secure things.  We had the furniture strap on every dresser and TV console because he would use them for pulling to stand maneuvers.  We put drawer/cabinet locks in the kitchen, which if you've never done it, is no small feat and a serious pain in the neck.  But at least our forks and butter knives were safe from that pesky child who thought pulling out the drawer was a blast!

Our biggest issue was a top of the stairs gate.  We live in a tri-split home with 2 sets of stairs that lead up to the top floor and down to the bottom floor.  When Owen started to army crawl, he made a fast dash for the stairs.  I would see him stop there and then contemplate.....hmm, should I throw myself down these stairs to get to the next level?  Sure, why not!  We finally found the perfect gate but it took Solito most of a Saturday morning to install it because we needed screw anchors, lots of drilling and even a block of wood to secure one side to the wall.  Once installed, it was difficult for anyone, even adults to figure out how to unlock it.  It was perfect!

But now we're in a stage where we don't need most of the safety stuff.  Owen knows the boundaries and the rules--he's never been a very mischievous little boy.  On top of that, he wants to help more around the house, doing things like setting the table, so he needs to be able to access the silverware drawer.  We recently wanted to paint the last area of our home that hadn't been repainted which was a huge space of entryway, dining room, and upstairs living room.  That included the area where the top of the stairs gate sat.  It hadn't been used in at least 6 months.  Solito and I looked at each other and said, it's time to take down the gate.  It had served us well, but we didn't need it anymore.

I am finding myself removing things with a bit of surprise sadness and reminiscing about why we had to secure something in the first place.  It's kind of like the last little bit of babyhood/toddlerhood is coming to a complete end around our house.  Don't get me wrong....I love the place we are in with Owen, but when thinking back on his baby days, there were times when I was certain we'd never leave the baby stage.  And now we're past that, long gone, moving on to other fun times with Owen.  He is growing up, he is learning new things, and he is hitting new milestones.  It's the end of one era, but turning the page to a new one.

Newest milestone...........writing his name all by himself!  Proud doesn't even do justice to my feelings!





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!

Kites!

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 one....new 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!