Monday, April 6, 2015

Spring Break Travels

This year for spring break we decided to go out East and visit Philly/Delaware/Baltimore.  This time we actually got to do things that we have wanted to do for awhile but other family business had prevented us.

On the plane, Owen got his own seat without a car seat for the very first time!  He really liked having the space and he got to sit in the middle between Mom and Dad.  He is a great traveler.

We took Owen to his very first in person lacrosse game at Johns Hopkins University, Dad's alma mater.  It was a beautiful evening--we even went without our coats for a majority of the game, but coming from Minnesota means that lots of other places are always warmer!  Owen loved watching the game and got really excited whenever a team scored.  Several young boys found lacrosse balls buried in the snow in the end zones and they offered Owen one, which he promptly threw back to them.   Oh well, at least we know he's got a good arm.

The following day we met up with Owen's godparents, Anthony and Jackie and their 2 kiddos, Nicolo and Francesca.  We had a great brunch and went over to Port Discovery in Baltimore.  Owen climbed his heart out and got Mom and Dad to join in on the fun.  They had a cool water area where Owen learned about what floats and what doesn't.  What a really fun place!

Francesca, Uncle Anthony, Nicolo, Owen, Solito walking together!

Our next stop was Philadelphia........and the Phillies team store at Citizens Bank Park!  We took a look at the new merchandise and had to make some difficult decisions on what to buy--so many choices.  Owen got a new ball cap and some Phillie Phanatic books.   Owen really loves that statue in front of the park.

We had to stop nearby and get a cheesesteak and crab fries, ballpark and Philly staples.  I haven't had a real cheesesteak in a LONG time and the one I had at Chickie's and Pete's totally hit the spot.

Off to the Independence Hall and Liberty Bell!  Owen would have touched that bell if given the chance, but we watched him like a hawk and so did the NPS officer stationed right there.

I noticed a sign saying that Benjamin Franklin's grave site was nearby and oddly, even though I've been to Philly a gazillion times, I hadn't visited it before.  Owen got to throw some pennies to honor ol' Ben---"A penny saved is a penny earned!"

Our next stop was a factory tour of Herr's, which is a well-known and well loved snack company in PA.  The facility was only about 30 minutes from our hotel in Delaware and even though I love their products and had lived in the area for 10 years, I had never been there!  Owen loved this place--he likes machines and watching how things work.  We got to see pretzels being made, chips being sorted and flavored, and popcorn being bagged.  It was really fun and we learned a lot about the company itself, founded by Jim Herr in the 1940s and still owned and operated by his children.  We even got free hot chips fresh off the line.....clearly a win in Owen's book since he is a salty snacker.

We had an afternoon free so we decided to check out Longwood Gardens which was part of the DuPont family estates and is now an open to the public set of various gardens and fountains.  There was a beautiful orchid display in the main area and we walked the whole place, seeing herbs, bonzai trees, fruit, and lots of beautiful spring arrangements.  The find of the place was the children's garden which had been remodeled in 2008.  There are tons of water fountains, which is code for "Owen's heaven".  He even got use a paint brush to do some "water painting".  Just as we were getting ready to leave, he found a raining type fountain, looked at me, and stuck his head in it!  So we left the building with a fairly wet, but very happy child.

On our last day we hit up the King of Prussia mall which is considered the largest mall in the U.S. (currently).  This where Owen fell in love with the Easter Bunny.  We also spent some time having a good lunch at Legal Seafoods, playing in 2 different kids' areas and finding Owen a Chase Utley Phillies tshirt.

I wish we had more time to visit even more people, but there just isn't enough time in the day!  As much as I have enjoyed a slower lifestyle living in the Twin Cities, I totally miss certain things and certain people out East.  We got to have some good meals with some great friends as well during our trip.  We enjoyed spending time with you (Arnold, Angie, Tommy, Linda, Uncle Steve, and Dawn).  We hope we get back out there sooner than later to visit again!

Monday, March 30, 2015

Owen visits the Easter Bunny

Over spring break last week, we visited the Philadelphia/Delaware/Baltimore area........more on the whole trip later.  During one of our outings, we took Owen to a gigantic mall out east in King of Prussia, PA.  This complex is huge and spans 2 buildings.  Solito and I used to frequent it when we lived in Delaware.  It was a rainy day, so we figured the mall would be perfect for walking around and hanging out in the play areas.  It was quiet that day, as most area schools were still in session.

Owen noticed the Easter Bunny before either of us did and I thought for sure he was going to freak out.  He has never liked mascots, Santa Claus, the Easter Bunny or any other furry character before.  But for some reason, he was enamored with the Easter Bunny.  He walked right over to him (her?  Who knows?!) and gave him a high five.  The Easter Bunny offered Owen a hug and he took it.  When Mr. Bunny had to leave (bathroom break), Owen was angry!

We took a walk while Mr. Bunny was on his break and made a tour of the entire 2nd building.  As we came back to the 1st building where we had parked and were getting ready to leave for the day, the Easter Bunny was in his spot and all set up for photos.  Owen was desperately trying to shake me off so he could run down the stairs to see the Bunny.  So I asked him--"do you want to take a picture with the Easter Bunny?" He not only nodded his head but also signed yes too and tried to take off again.

I asked the gals running the booth what the cheapest package for photos would be and we took it.  Owen hopped right on to the Easter Bunny's lap and took some great photos.  While the girls and I were processing the photos and deciding which one to get, Owen and the Bunny danced to music they had playing---I wish I had gotten video of it, it was SO cute!  We got our photo and Owen gave one last hug to Mr. Bunny.

It was a really pleasant I wonder how Owen would feel about meeting the Phillie Phanatic???!!

Thursday, March 19, 2015

A Day in the Life with Down Syndrome: WDSD 2015

**This post is part of a large, collective effort to showcase living life with Down Syndrome and to celebrate World Down Syndrome Day, 3-21-15.  You can find other wonderful stories here.**

A day with Owen used to be spent mostly at home but these days, he is off to school for the majority of the day.  He rides the bus every morning and he loves waiting for it outside.  Sometimes he likes taking his iPad out with him to watch a few minutes of something or play a game before the bus shows up.

After school these days we like playing outside.  No one is more happy than Owen if he gets to be outside, running around and learning to swing by himself.

Once a week Owen goes to private therapy where he works on speech and fine motor skills, but he also gets to do this as a reward for good work........looks pretty fun to me!

Sometimes we take a bike ride around the neighborhood.  Owen just got a new trailer-bike that he really enjoys.

A day in the life of Owen is a lot like other kids his, learning, playing outside, being with friends and family.   Life with Down Syndrome is just that.....LIFE.

Wednesday, March 18, 2015

Hate is a Strong Word

I hate Owen's communication app.

OK, I don't hate it.......I hate the fact that he needs to have it.

I hate that I can understand him completely and no one else can.

I hate that people stare at him when he uses his device to ask me something.

I hate that a 2 year old can have a whole verbal conversation with her mom in the store and I have a nearly 6 year old that can't do that.

I hate that the waitress at a restaurant we went to over the weekend refused to acknowledge Owen's order of mac-n-cheese that came from his device and asked me what he wanted to eat.  She looked totally put out when I asked her to ask Owen again what he wanted.  If he can't use it at a restaurant to make choices, what is the point?

I hate the computerized voice that's so emotionless.

I actually hate the thought that he will have to use it his whole life.  I could probably be OK with it if it were temporary.  But as time goes on and we get nothing in the way of real speech, I realize this is probably a forever thing.

I hate that I feel this way.

Hate is a strong word.  Right now it's the only word I can use.

Tuesday, March 10, 2015

Emotions, Actions, and Communication

I know most people think Owen is a very happy, smiling little boy.  And for the most part he is.  He lives a pretty simple life and he enjoys a good deal of things like sports, playing outside and a good movie.  But there are obviously times when he gets emotional about things.......anger, sadness, frustration.  When most people feel those emotions, they let them out, they talk to others about their feelings so that they know someone else understands and can empathize with them.

The hard part for Owen is that he can't talk out his emotions.  He physically can't speak so he can't come to me and say, "Mommy, I'm sad about this or that" or "I'm angry because this happened to me today".  I have to play a guessing game as to why he is upset and making a yelling noise.  This is a little easier to do when we are at home, but not so much when we are elsewhere or when he is at school.

My husband is a formulation scientist in the agricultural field.  He works with co-ops and farms to come up with solutions that they need in order to grow crops.  He creates products that help contain the growth of weeds or keep bugs away so that crops can grow to their best potential.  With that, his 2 busiest seasons are planting (spring) and harvesting (fall).  He often has to travel out of town overnight in order to visit fields of crops, experimental farms, and manufacturing plants.  Sometimes he is gone for days in a row, sometimes it's one night.

When Owen was a baby, Dad's absence didn't affect him too much.  He had what he needed from Mom.  But as Owen has gotten older, he notices Dad's absence and he doesn't like it.  I try to explain to him the best I can that Daddy is working but he'll be home soon.  He gets weepy and sad and there is literally nothing, not even his beloved iPad, that can pull him from those feelings.

Lately his feelings has been spilling over to school time.  His teacher and I have noticed a pattern--when Dad is gone overnight, Owen acts up in class.  He doesn't want to do the activity, he has thrown things like number tiles, paper, and pencils, and has even lashed out by hitting.  Of course, this makes me sad and angry because I don't want Owen to get in trouble or lose his time in gen. ed. because he can't control his emotions.  I'm sad that he doesn't know a better way to communicate his feelings other than to take it out on everyone else.  On days when Dad is home and not traveling, Owen does just fine in school--no throwing issues, not acting out.  It is clear that his behavior is his way of communicating that he is not happy that Dad is gone.

Obviously we need to find Owen a constructive way to explore his feelings because he does have a right to have them; he just doesn't have the right to take them out on everyone else.  His teacher and I are working on a social story that has pictures and a short video of Dad that explains why Dad is out of town and not at home.  We are also trying to get Owen to use his communication app to say that he is sad or angry, because it has a whole set of emotions that he could use to express himself.   I think, though, that we have to work on what it means to be angry or sad or frustrated and what you can do when you feel those things.  We are entering territory that is rather new to me in terms of how to deal with this with a child that can't verbally communicate about it.  The app is great, but Owen needs to understand these feelings before he can actually use it in that way.

The other thing I will be doing at home is making a count down calendar that shows where Dad is and when he is coming home.  I plan to make a paper book too about why Dad leaves home sometimes.  It must be so frustrating to him to see Dad in the morning before school and then Dad doesn't come for 2 days.  There is nothing that Solito can do about this because that's just his job.  We have to help Owen learn about his feelings and how to cope with them because that's part of being a human.  The sooner we help him with it, the better it will be and his behavior at school will be better when Dad is gone.

Wednesday, March 4, 2015

Spread the Word........ end the word!

Today is the annual day of awareness and pledge to stop using the word "retard".  I'm not asking people to stop saying it because I want to be "all PC" or the word police.  I'm asking people to stop using that word because when they use it, they are demeaning people like Owen.

Yes, Owen has some form of mental retardation; that's a big part of what Down syndrome and its pesky extra chromosome does.  It hurts to me to even write that, but I know that those words don't define him.  I know that my son's IQ will fall somewhere on that scale, but that's not WHO he is--he's not a "retard", he's Owen.  And when people use the word "retard" to mean stupid, they are saying that my son is stupid.  He is not.  He can problem solve:  he wanted to wash his hands last night and couldn't reach the sink.  So he went downstairs, dragged his plastic stool upstairs to the sink and took care of business and he did it without asking for any help.  He can write his name, he knows all of Kindergarten sight words, he can swim for 5 feet on his own, he can do puzzles faster than I can dump the pieces out, his memory is pretty darn sharp, he picks up signs like nobody's business, he can navigate an iPad or smartphone without any kind of assistance.  He's not stupid.   Will he win a Nobel Prize?  Probably not, but neither will I and I have a master's degree and some would classify me as fairly "smart".

I'm asking everyone to think before they speak.  Let's stop using words that belittle people in all walks and all abilities of life.  
Take the pledge!

I think this picture says it all, don't you?

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!