Tuesday, April 15, 2014

Pool Boy

Last week was Owen's last swim lesson of the 1st spring session at our local YMCA.  He was once again paired with his favorite instructor, D.  He worked with her last year for a couple of sessions, but then got paired with others.  I always thought he did his best with her and just seemed to have a lot of fun.  She's really great with him, uses sign language, gives him wait time to answer her questions, and has an arsenal of games and songs to use to motivate and play.

Even though the session was only 7 lessons, he seemed to progress quite a bit.  I'm sure it helps that we go to the pool as a family at least once a week, sometimes twice if we can swing it.  He is SO close to just letting go and swimming on his own, but he still needs to figure out that coordination of arms, legs, and blowing bubbles.  We also need to get him to wear his goggles so that he can learn to go underwater, but one thing at a time!

The best thing to come out of this session............Owen learned to float on his back!  And he can do it with and without a floatation device (just needs reassurance that someone's hand is barely under his back).  He is not afraid at all and doesn't "squawk" when asked to do it.  He just does it and of course he's super proud of himself afterwards, demanding everyone clap for him.  That is one demanding request I'll be happy to oblige for the little man!

Hoping the next session brings a new learned skill and more fun!

Using a pool noodle without any fear
Kicking up the water
Collecting all the stars to give to D
Playing "motorboat" with D
Back floating like I've been doing it my whole life!
I love the pool.  Can I live here??

Monday, April 7, 2014

The Big Meeting

As a young kid growing up, I often felt that I couldn't control the fact that my family was messy and loud.  So I kept to myself and my room was immaculately clean.  As I got older, my "neatness" only multiplied because for me, it has always been the one constant, the one thing that I'm really good at and it makes me feel in control of something in my life.  When I get into a situation where I feel at a loss or stuck, I immediately go to the one thing that I can do to re-install order in my life--cleaning.  When people make jokes at my expense about how clean my house or car is, they have no idea why everything is that way and they have no idea that it comes from what I consider my psychological low point. 

So on Friday, 2 hours before I was supposed to be sitting down at a meeting for Owen's transition to Kindergarten, I was frantically dusting, vacuuming, emptying trash cans, folding laundry, cleaning bathrooms.  I couldn't sit still because I had a lot of nervous, anxious energy.   This transition to Kindergarten has hit me harder than really anything to date.  The loss of having control over things that Owen and I have done together for the past 5 years has pushed me to a breaking point forcing me to move past it and accept it.

The meeting on Friday finally gave me a sense of peace that has been elusive to me for at least the past 3 months.  I visited the classroom in February and was able to see how the classroom functioned and I could see how Owen would fit in and would be able to get the 1:1 time he needs to work on things that are harder for him.  Meeting the members of the team, who have been together for some time, was quite reassuring and hearing about the schedule of the day showed that they understand when Owen and his classmates will need sensory breaks.  He will spend time in the morning in general education Kindergarten and an aide will accompany him and his classmates to/from class and offer support, if needed.  They will also eat lunch and have recess with all the Kindy classes; aides will be there to offer assistance during lunch like opening containers or helping carry food trays.  They will continue with our timed toileting schedule unless Owen really gets the hang of it over the summer (crossing my fingers!!).  I really liked hearing though that a main focus was for all the students to be as independent as possible.  So that is something we will work on during the summer with toileting/dressing, practicing how to open lunch box materials and carry a tray with food on it.

One of my biggest issues with school this year has been communication--or really lack thereof.  So I specifically asked how that will be addressed.  The lead teacher, S, said that when we get ready for ESY in July, which she will be a part of, she will ask how we want to communicate--notebook, email, phone call--and how often.  What a breath of fresh air!  Someone is willing to actually tell me what my kid is doing in school?  Amazing.........insert a deep sarcastic sigh here.

Owen will adapt quickly......I'm always the one who has a hard time.  But I do feel better knowing that he is going to get a great team, who already got big smiles and high fives from him at the meeting.   And I will learn to be OK with losing a little bit of control.......but don't be surprised if I open a cleaning service during the school day!

Bring on Kindergarten!

Monday, March 31, 2014

Slow and Steady Wins the Race, Right?

Owen's speech progress in the last few months has been quite exciting, at least for me.  It may not seem like a lot to someone else, but any new sound is a cause of celebration for me.  I think Owen's confidence has risen quite a bit, which contributes to him trying new things, concentrating more, and working harder on repetition.

Because of his speech apraxia, it is hard to get him to repeat things consistently.  Just when you think he has something down, you ask him to repeat it, even just moments later, and he cannot do it.  That is why repetition, even though it may feel like you are a broken record, is key in helping Owen learn to speak.  The more chances Owen has to work on a sound, the better the chance that it sticks with him.  Another aspect of his speech delay includes oral motor planning.  Even though his brain can tell his mouth what to do, it takes an extra amount of time for Owen to form his mouth and tongue into the right position to say the sound or word.  Because of this, again, he is not consistent in the correct formation each time.  Repeating a specific amount of sounds gives him the chance to work through his poor motor planning and strengthen his mouth and tongue so that what comes out will be more on target.

The sounds that Owen is currently working on are the typical sounds a 1 year old makes:  b, p, m, d.  Less frequently we hear h and n sounds, but those are definitely emerging as we hear "heh" for help and "nuh" for no.  We often hear "da da da da da da" but not necessary in reference to Dad, but we have asked him to say dad and we hear "dada", so I think that is actually coming along as a word that has meaning.  We continue to hear "buh" for ball and "paaah" for pop/popcorn.  His swim instructor got so excited during his last swim lesson:  she asked him to put his face in the water and he said to her "NOO!"  She didn't care that he didn't comply; she was so happy to hear him say a word!  Of course when we asked him to replicate it, he couldn't do that.

One word that I think we can consider to be his first word is up!  We've been hearing it for the last week, specifically when we are playing ball.  He wants us to throw the ball high up into the air and as he points, he says "uhhhhhh ppppp".  It's very long and drawn out, but he is doing it every time, mostly on his own.  But he will do it if we prompt him as well.  I would say it's probably 90% consistent as well, so it is definitely a word and I couldn't be happier.  I need to get him on video doing his sounds, but every time I get the camera out, he starts mugging for it instead of "talking". 

The hardest part of a speech delay is that Owen has such an amazing receptive vocabulary and knowledge.  There are so many things he knows and can do if you ask him.  It's the expressive piece that is so problematic and causes him frustration when he wants to tell us something but can't because he doesn't have the words or we haven't tackled that particular sign yet.  I'm finding that I can't even keep up with all the signs either and that makes me frustrated and sometimes feeling like I'm letting him down or I'm holding him back.  

We are hoping to add a second day of private speech therapy this summer and I think that might be the key to pushing him into more verbalization.  It is quite possible that his speech will never be very intelligible beyond those closest to him, but that is something we will continue to work on.  We are looking at using an iPad with some communicative applications and the speech team at our private therapy center are more than willing to help us figure out which one works best and how to get everything Owen would need from the app.  So I am confident that he will have a way to communicate with the general public as he grows up.  It might not be the traditional method, but traditions are made to be broken, right?!

Friday, March 21, 2014

WDSD: This Kind of Love

*This post is written in celebration of World Down Syndrome Day (3/21) and as part of a blog hop sponsored by the IDSC.  The theme for this year's hop is "This Kind of Love".*

This kind of love...........

Helps me put on a brave face even when I'm scared:
First family photo taken right after we were told O probably had Down syndrome

Keeps me going when things are tough:
After open heart surgery, 9/3/2009

Makes first time experiences so much more fun:
First time at the beach, July 2009 (2 months old)
First bike ride, April 2010 (11 months old)
First baseball game, Sept. 2010 (16 months old)
First day of preschool, Sept. 2012 (3 years old)
First water park and trip to Mexico, Nov. 2012 (3 1/2 years old)

Turns friends into much loved family:
Anthony and Jackie, Owen's godparents, July 2009

Jackson/Dasilva family, August 2013

Diana and Dan, October 2013

Is more than I ever hoped for!
O's 1st birthday, 2010

O's 4th birthday, 2013
Summer Vacation in MI, August 2013

Christmas 2013

Wednesday, March 19, 2014

A Guest Post: Monday Coffee and Other Stories

When I wrote a piece for a special needs anthology, one of the things they asked was that we participate in writing posts for a blog that was set up to promote the book and the authors included in the anthology.  An all call was put out for a St. Patty's Day/Luck post and I had something swirling in my head about how I do consider myself lucky, even though others might not.

Here it is:  1 in 800!  And if you're interested in having a post featured there, please submit by going here.

Tuesday, March 18, 2014

A Day in the Life: A World Down Syndrome Day Blog Hop!

**This post is part of a project of the T21 Writers' Alliance and Down syndrome Blogs in celebration of WDSD**

Sometimes people think life with a child with Down syndrome is hard, tough, sad, scary, and filled with doctor and specialist appointments.

Well, those folks wouldn't be correct at all.  Life with a child with Down syndrome is simply this:  LIFE.

Yes, we have seen a good number of doctors and specialists, but that was mostly very early in Owen's life.  And now when we have those appointments, they are maintenance--let's make sure everything is working the way it's supposed to work.

Yes, sometimes life is tough and hard and scary, especially when we had to go through Owen's open heart surgery.  But there are scarier, harder, and tougher things in life to endure that I pray we don't have to go through any time soon.  I think life in general can be hard, regardless of having child with Down syndrome.

Yes, there are challenges that we have to work through--in Owen's case, his speech is severely delayed.  So we work a little harder in that arena.  But every kid has an area where s/he experiences difficulty, so that isn't so different.

Our day in our shoes is a lot like other families.........we work, we send a child off to school, we hope he takes a nap, we try to make sure we spend time together as family (like shopping or going to the zoo), we deal with house repairs/upkeep, we try to hit the gym, we eat chocolate ice cream, we long for the snow to melt and the spring warmth to hit us.

This isn't a sad life at all.  In fact, there is no sadness here; Down syndrome is not sad.  Down syndrome is just another aspect of this thing we call life.........and we're living it up!

Life is good and life is normal

Tuesday, March 11, 2014

When Increased OT Skills Come Back to Haunt!

So this happened today.......walking into Owen's room at 3 when his "quiet time" expired and I see 1.  a completely naked child and 2.  what appears to be poop on the floor next to a discarded pull up.  I stop dead in my tracks and give the room a quick survey to see if there is any more of this lovely present anywhere else in the room.  I hustle him across the hall, onto the potty, and run the bath immediately.  Then I assess the damage to his room.  Nothing other than a dirty sheet where he had decided to lounge in his naked, dirty state.  I stripped everything and dumped it in the wash and gave the boy a thorough scrubbing after showing him where we are SUPPOSED to put our messes--in the toilet.  I also used some OxiClean on the carpet just to make sure there isn't anything left behind.

The kid's OT skills have always been his worst problem--he hates sitting still and working on lacing, buttons, writing, cutting, art projects (unless it's paint--then he's a regular Picasso) and the like.  Oh but today, he showed that he can a.  take off his shirt; b. take off his pants; c. take off his socks; and d. pull off that pull up!  So yeah, he's holding out on me.  On top of that, I'm pretty sure the reason he stripped down to his birthday suit is because he KNOWS that he went potty in his pants and he's no longer a fan of it.  This is good......great!  BUT, we really need to work on that whole "this yucky stuff that you don't like on your body goes in the toilet, sir" and FAST!

Crisis averted this time.........please dear heavens above don't let there be a really, really gross next time!

Thursday, March 6, 2014

Running with the Big Boys

Over the weekend, the hubs, Owen, and I spent some time at our local Y.  It's a place we frequent so most of the staff know us pretty well and Owen is always greeted warmly.  It's one of his favorite places because they've got a pool and a large gym where we can shoot baskets.

Last Friday night, we ran some errands and then headed for the gym.  When we first started shooting the ball, we were alone.  Then a young man, high school age, showed up and started shooting near us.  Owen became fascinated with him and would chase down the ball for him.  At first he would try to kick it back to the boy, but then after watching Dad bounce pass it, Owen started trying that out and he was able to figure it out.  The young man would wait for Owen to get the ball and then wait for him to pass it.  Several other boys showed up because they were going to play 4 on 4 together.  We stayed around for a few more minutes while Owen kept running around, chasing down the errant balls for the boys.  When we moved to the other court to give the boys their space to play, Owen got a bunch of high fives and lots of "thanks little dude!".  He loved it, absolutely loved it.

Just watching him, I could see the future with him as a basketball team manager.  He would love that job--organizing the jerseys, handing out the drinks, collecting all the basketballs.  Sure, he could be on the team if he worked hard at playing basketball and if that's something he gets interested in, we'll help him learn the game and how to play.  But I know how content he is to be the helper--it's something he enjoys doing at home, helping with laundry, the dishwasher, the vacuuming, putting books and toys away.   On top of that, he really loves to just watch the game and yell out cheers when the ball goes through that hoop.  He's taken to smacking his leg or the arm of his little chair when a shot is missed during a game we're watching on TV.

I was really impressed with the young men who let Owen chase the balls for them, even if it took a little extra time for him to get them.  They were kind to him and you could tell that they enjoyed his enthusiasm for the game as I could see them smile and laugh when Owen got excited.  Sometimes I wonder if people are "more kind" to Owen because they see Down syndrome.  But I really don't think Ds had anything to do with this experience.  They just saw a little kid who wanted to run with the big boys and they didn't mind at all.

This hoop is just my size!

Tuesday, March 4, 2014

Spread the Word........

.......to end the word!

Tomorrow 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 is learning to write, he knows basic shapes and colors, he's almost swimming 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'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?


Thursday, February 27, 2014


"You're SO smart!"  "What a smart boy you are!"  "That kid is so smart, he's going to be an engineer/doctor/scientist."

Since having Owen and after his recent educational testing for his transition to Kindergarten, I've pondered a lot about what is means to be "smart" and what a person's level of intelligence might dictate for the rest of his life.  I guess I would be considered "smart"--I graduated at the top of my class in high school, received a partial scholarship to attend a college that I loved and graduated with honors.  I earned a master's degree and was considered a leader in my field of teaching.  In some circles, I would be considered successful.

But if someone else doesn't achieve those things, does that make him less successful, less worthy?  I understand that it's important to have goals in life; they provide meaning and a sense of self-confidence and self-worth.

Sometimes I think there's a push both inside and outside of the disability community to wave the flag of superstar status over people with disabilities who achieve extraordinary things like owning a business or earning a college degree.  That every single person with a disability should try to follow in their footsteps.

But the key here is that those are extraordinary things for most people, disability or not.  I've never owned a business and I'm not sure I have the right mentality to do that.  I firmly believe that college isn't for everyone; there are lots of excellent jobs that don't require a 4 year college degree and that are always in demand.  So why must those things always be a goal for someone with a disability? 

I guess I'm wondering why we (parents, caregivers, families, community) are always pushing that agenda.  Do we think it will make our kids more "normal"?  Are we trying to prove something to everyone around us?  And how do we feel, if we've had those goals for our children, if they don't work out?  Is your kid a failure then?  Do you think your parenting failed?  If those achievements pass him by, does that mean his value as a human being drops to nothing?  There are plenty of "typical" people who lead ordinary lives.....isn't that OK too?  Isn't ordinary, get through the day to day life just fine?

Of course I want Owen to be the best he can be.  I still don't know what that is since he's only 4 years old.  I would like him to find work that he likes and enjoys.  I would like him to be able to make decisions for himself and be independent.  In a way, it scares me that his path is forged by the decisions I make for him right now; I don't want to close any doors for him.  I want the message to be clear to him that we expect you to learn and do the best you can and whatever you achieve, we will be proud of you.....the same message I would send to him whether Down syndrome was a factor or not.