Wednesday, May 20, 2015

The Things He Knows

I went to a children's mega sale recently.  I wasn't really there to buy clothing so much as I was there to buy books, Level 1 Readers to be exact.  Owen has been obsessed with books since he was an infant.  Both Solito and I are readers.....magazines, city guides, novels, historical fiction, maps, mystery novels.....we love it all.  There are books everywhere in our home--the coffee table, the kitchen table, the car.  Owen has 2 book slings, one in his bedroom and one in the living room and he has 2 bookcases in his closet filled to brim with books of all kinds.

Owen has shown a big interest in the Level 1 Readers for awhile now.  He likes more of a story, he likes seeing the punctuation, and running his finger along the words as we read.  We do a lot of point and show--point to this particular word to show me you know it.  His sight word vocabulary is getting quite good and I am constantly impressed with how many words on the other Dolch lists he knows now.  His teacher even started him on the 1st grade reading curriculum about 6 weeks ago.  I couldn't believe it when she told me that!

But there are other things he knows that I don't know that he knows until he shows me.

We were looking at a new to us book called "Take Me Out to the Ballgame" that is about the World Series in 1947, set to the lyrics of the song.  It's beautifully illustrated and it's very fun to look at all the pictures on each page.  One of the pages near the beginning of the book caught Owen's eye.

He kept pointing to the American flag and signing the word "talk".  I had no idea what he was asking me to do.

Then I watched his little hand go over his heart and I realized that he wanted me to say the Pledge of Allegiance.  I forgot that they do this every day in Kindergarten.  His K teacher said he knows exactly what to do and stands with his classmates every morning facing the flag.

So I started reciting the Pledge and he stood up!  And then he signed more and made me recite it 3 more times while he stood with his hand over his heart just like he had been taught at school.  Every night for the past week that book has been on his reading agenda and every night like clockwork he demands that I recite the Pledge while he stands.

The things he knows......that I don't know that he knows........what else is hiding out in that brain of his?

Thursday, May 14, 2015

Apraxia Awareness Day 2015

So apparently like everything else in the world, there is an Apraxia Awareness Day and for 2015, it is today.....May 14.

I think there are lots of people who don't quite understand what apraxia is, so I'll do my best to explain it and then talk a bit about how it personally affects Owen and his speech process.

There are 2 kinds of apraxia:  childhood apraxia of speech (CAS) and apraxia of speech in adults, which is often caused by a tramatic brain injury or a stroke.  Apraxia in general is a motor speech disorder.  A person diagnosed with this disorder has trouble planning their speech; they often know exactly what they want to say but cannot get their brain and their mouth/tongue/lips/oral muscles to work together to form the verbal output.

When a child is learning to speak, they get input from those around them with regards to how they are forming their words and sounds.  They often listen to those around them to hear how sounds are made and as infants they try to repeat those sounds back to their parents or other caregivers.  We know that children start with what are considered easier sounds to make--b, p, d, m--and then add harder sounds and eventually more syllables to form words.  As they practice this skill, it becomes less and less difficult to replicate and stored in the brain to be called up whenever necessary in conversation.  Children with CAS are more likely to struggle right here in the forming of sounds and syllables.  They likely never make those "files" in the brain that become automatic.  No one is sure why that happens, but most professionals in the speech therapy field believe that there is a large neurological component to CAS and that the brain and the oral muscles have a disconnect.

Another important piece of a CAS diagnosis is wide gap between receptive language (ability to understand language) and expressive language (ability to produce verbal sound).  Children with CAS tend to have a fantastic receptive language and truly understand the conversations around them.  Their expressive language is severly delayed, often by years, as in a 7 year old that can only make the sounds that would typically come from a 6 month old infant.

Diagnosis of CAS can be tricky, first because there is no one specific testing platform that can provide the immediate designation of CAS.  Even leading SLPs differ in their agreement with certain tests and the diagnosis itself.  There is specific training an SLP can take in order to be a specialist in the field of CAS and if you suspect that your child has it, it is important to seek out an SLP with that training.  There are specific techniques used to encourage oral muscle and motor skills in children with CAS.  Most diagnoses have several testing components involved, which include an oral-motor assessment (looking for signs of weakness in muscle, jaw, tongue, mouth), melody of speech assessment (seeing how a child uses syllable stress and intonation on words) and a speech sound assessment (checking out how well vowel and consonant sounds come across as well as any syllables and sound combinations).  Having difficulty in any one of these areas can lead to a speech disorder diagnosis, but having more than one of these issues typically leads to a CAS diagnosis.

Typically an SLP will not diagnose a child younger than 3 with CAS.  It is too difficult at young ages to determine CAS, especially if a child does not have a large expressive vocabulary.  For this reason, many SLPs will diagnosis and treat young children with articulation disorders and work to find improvement for them.  As a child becomes school age--5 or 6 years old--a CAS diagnosis is more likely to be determined because a certain level of speech production is expected by that time in a child's life.

What does CAS look like in Owen?  He wasn't formally diagnosed with it until he was about 4 1/2 years old.  His private SLP wanted to give him extra time because she has worked with many children with Down syndrome and with boys in particular, she knew that they often take longer to work on speaking.  A lot of that has to do with the fact that boys tend to be later speakers in general and Owen has always been a gross motor seeker.  He'd rather spend his day climbing up ladders than working on the perfect stream of words.

Once she suspected CAS, she began with the inventories I mentioned above.  She noticed lots of weakness in his oral muscle and tongue.  He would often have a hard time moving his tongue in the demonstrated ways during a therapy session or he might do it 1 out of 5 tries correctly.  Some of the exercises we work on at home involve moving his tongue side to side and touching the tip of his tongue to his lip.  These are necessary in order to form syllables which become words.

Secondly his intonation on sounds and syllables was totally off.  One day he would be able to make an m sound and then next time he was asked to replicate it, he couldn't.  His speech sound assessment was all over the place; again he would have certain vowel and consonant sounds one week and the next week he would struggle to replicate them one time.  His m sound in particular has come and gone over the last 2 years more times than I can count.  

Practice and repetition are big components to therapy practices for CAS.  It is important for a child to nail down the beginning sounds of b, p, m, d and then add vowel sounds to them.  We practice with mirrors and various word combinations all the time.  The more you practice, the better the sound and the facial recognition of the sound become.  Again, this is about helping the child make those sounds permanent in their repertoire of speech.  The foundation of sound has to be set before you can expect things like full words or sentences.

And that is why CAS is a tough diagnosis.  It takes a lot of work and for a long period of time you might not see any improvement or change.  It is also one of the reasons that lots of parents move their children to an AAC--augmentative and alternative communication system.  Owen uses his iPad with a specially downloaded app called Dynavox Compass at home, school, and private therapy.  We have pages set up for him for those specific locations that allow him to speak.  There are food choices, book choices, play time choices, and pages of routines like going to the bathroom or asking someone to play with him school.  It provides him the verbal voice that he currently does not have.  It doesn't mean that we have given up on verbal speech, but it does provide Owen with a way to be a part of the conversation and communication around him.

Some resources that you might find helpful if you suspect a CAS diagnosis or would like to discuss one with your SLP:

Childhood Apraxia of Speech Association of North America

American Speech-Language-Hearing Association

Facebook group of parents with children who have CAS

National Institute of Health on Deafness and Other Communication Disorders

International Society for Augmentative and Alternative Communication

AAC Institute

Uncommon Sense--fantastic blog written by a mom whose daughter uses AAC.  In the blog, she writes about their trials and errors with various AAC devices, how to implement AAC, and provides videos of both her daughter and son using AAC in every day situations.

To find a professional SLP with CAS training in your area, go here.

Articles/sites with AAC app information:

Monday, May 11, 2015


Last week we celebrated Owen's 6th birthday.  I'm behind in posting about it for several reasons, most of which is related to our big move to Colorado.  On his birthday we found out we got the house we wanted in Colorado and the following day at his birthday party we found out that we had some offers on the table for our home in Minnesota.  Talk about a whirlwind!  On top of that, I'm still wrapping my head around him being 6 AND losing his first tooth on his birthday too.  It's been a bit of an emotional roller coaster these last couple of weeks!

Missing tooth!
I'm also kind of dazed that we are here.......6 years old, losing teeth, finishing Kindergarten in a few weeks.  I have said the last couple of years that I'm not ready for this and I'm still not.  He is growing up before my very eyes.  He is changing all the time--his likes/dislikes, his physical strength, his ability to try new things, his communication--both in terms of using his "talker" (iPad app) and his own sign language.  He points to himself and then to the item he wants all the time.  Owen lets us know more often than not that he is engaged in the conversation.  He knows what he wants, even if Mom and Dad don't agree with his choice!  :)

I remember looking at him when he was a tiny baby and thinking, I wonder what he'll be like when he's 5 or 6 years old.  I don't have to wonder any longer......he is there.  He's still a serious sports fanatic, book lover, and outdoor enthusiast.  His interest in Curious George has never been stronger, but his fandom of Elmo is waning.  Instead he is going full steam ahead with Thomas the Tank, albeit a few years behind his typical peers most likely.  We totally cleaned out a used book store of all of their Thomas Level 1 readers this weekend.  Now I need to learn all of their names since he is obsessed!

Age little!
Age big!
On his actual birthday, we went to the Mall of America.  We had dinner at Owen's favorite Italian restaurant.  Then we went to Nickelodeon Universe to ride the Log Chute.  We all got wet and Owen decided that he liked watching others ride it instead.  We also rode the carousel a few times and played some arcade games.  Owen won a rainbow slinky and he has enjoyed learning how to send it down the stairs at home.

Watching the log ride is better in his opinion
Of course we have to play some basketball!
6 is a very fun, but exhausting age and that was proven when we hosted his birthday party and 13 classmates came to the indoor park we chose.  They all had so much fun and they gave Owen the best birthday cards, many of them homemade.  He loves looking at them and pointing out their names (yes, he has that memorized too!).  He and I will treasure them for a long was absolutely a bittersweet time knowing that we won't be in 1st grade with them next year.

Owen did NOT want to be bothered while eating!
Owen and his buddy Alex
Blowing out that candle is hard work
The party goers!
I want time to slow down.  I don't want to imagine Owen as a 10 year old because I'm selfish and I want him to stay little forever.  I know that won't happen, but I do know that I am so proud of him and I feel very lucky to be his mama.  Happy birthday, little man!

Spring school pic.....such a grown up boy!

Wednesday, April 22, 2015

Why a Carousel Ride Made Me Cry

To those that know Owen or have read here before, you'll remember that he has sensory processing disorder.  Sometimes he's overstimulated by things like noise and sometimes he is a sensory seeker where he needs input from something like a chewy.  I've written about SPD several times and what Owen's issues tend to be.

One thing he has never liked is being on a swing or going on an amusement park-type ride.  We tried a slow ferris wheel once at the Mall of America and he totally lost it--cried, screamed and even tried to open the ride door to get out!  So needless to say, we just avoid those things because we know he doesn't like them.

His occupational therapist has been working with him for several years to get him to ride on a swing.  This is the first year that he has wanted to do that.  He does it at school all the time now.  He comes home from school and wants to go outside.  The first request he makes when we get out into the backyard?  "Swing!"  He's even figured out how to swing on his tummy and twirl himself around.  This is HUGE for him.  He loves it.  I never thought he would but he's out there just about every day, swinging on his own.

Recently we went to the Minnesota Zoo which is about 15 minutes from where we live.  It's one of Owen's favorite places and we go there a lot.  They added an old fashioned carousel on the grounds of the zoo as you head out to the farm area.  When Owen saw it, he was so excited and watched as little kids climbed aboard the various animals to ride.  He laughed as it went around and around.  After a couple of times, we started to encourage him to walk with us to the farm.  He shook his head and stomped his feet.  I thought he wanted to stay longer, but then he grabbed Solito's hand and took him to the line forming for the next carousel ride.  I asked him if he wanted to ride the carousel and he adamantly signed "yes".  So I hustled over to the payment area (yes, one ride costs 2 bucks, everyone needs a ticket, including parents.  But if your kiddo is under a certain height, s/he rides free.)

Owen handed the gal running the carousel his coins for a ride with Dad.  He didn't want to sit on the animals, but chose the bench seat instead.  He loved it....laughing the whole time and waving to Mom.  I got a huge lump in my throat watching him enjoy the ride and tears started falling.  I didn't think he'd ever want to do something like this.  His sensory issues have always made him run away or cry when we would even come close to walking by a carousel or another type of ride.  Now he was delighted and my tears were tears of happiness for him.  Mom even got to ride with Owen and Dad took some photos as best he could.

Owen is really changing A LOT.  He is overcoming some things that I didn't think he would.  He is learning so much from being around his typical peers at school and I think just watching them has hepled Owen push his own limits.  We are learning to ask him more often what he wants to do or try because he is expanding his horizons and rather than hold him back, we want him to give things a try.  He is turning into a school aged boy (much to my chagrin sometimes!) and really coming into his own more mature personality and that is fun and exciting to watch.

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?