Wordless Wednesday -- Miso Cute

                                                                               Photos by my 10 year old, Anna

Reflections...on Down syndrome... and Family

Palm Sunday 2010

Easter 2009

Easter 2008

The kids griped about posing for a photo in the same place for three years in a row. But, I think it's cool to see how much they've changed.  In the bottom photo, Greta was just turning 3 and often refused to smile for photos. John Michael, still in that cuddly baby stage, just thought the swing rope was pretty cool.  Nic and Anna were in 5th and 3rd grades, and already big helpers with the younger two.

A year later, Greta is all smiles and John Michael has grown out of his baby stage and morphed into a cute, crawling towhead. Nic and Anna had matured as well.  This was the start of a fun year, really living and feeling comfortable in our new world of having a child with Down syndrome.  We've met so many great local and online families since a year ago around Easter.  To date, I have at least 140 "friends" on Facebook that have a child with Ds.  Most of whom I've not met, but feel a deep connection to.  It's so strange, but wonderful... this amazing Ds community.

Fast forward another year... to today. Greta is almost 5, counting to 100 and spelling a bunch of 3 letter words. John Michael is 28 months old and quite the toddler, walking, running, climbing up and the down the slide, kicking a ball, and is full of love and life. Anna and Nic continue to mature and become more and more responsible and independent.  We've immersed ourselves in the Ds world... being comfortable in our roles as advocates, talking to a couple schools about Ds and the r-word, facilitating a mom and dad sharing session through the local DSIA, meeting moms with newly diagnosed babies and welcoming them into our fold, helping a friend raise money to adopt a child from eastern Europe who also has Down syndrome.  The list goes on...

I asked Nic tonight if he ever thought about John Michael having Down syndrome. He said he doesn't notice. John Michael does so much and it's only when we compare him to a typical child at the same age that we actually notice his "delays." But to us, he continues to grow and reach milestones that we don't think of him as "delayed." It's only society that places those labels on him. I know we will continue to experience great things as a result of haivng John Michael in our lives. I still hear from parents that tell me their son or daughter was positively affected by my talk on Down syndrome and the r-word!  That's awesome!  You never know if you'll touch someone or if they'll just roll their eyes at you and think "whatever..."  Hopefully, we're reaching more of those who will be touched and in turn will touch others in a positive way.

Sensory Exploration for Speech and Fine-Motor Skills

This afternoon, John Michael's speech therapist brought over 4 bags of dried beans and filled a large bowl with small rubber cars, boats, trains, fire trucks and airplanes in various bright colors. The idea was to have him find the toys and make specific sounds associated with each. For example, fire truck was "wa-oooo wa-oooo", boat was "toot toot toot", car was "voom voom voom", train was "choo choo choo" and airplane was "ma ma ma ma..." The goal was to get him to string more than two syllables together in succession. Rather than just saying "choo choo" for train, she tried to get him to elongate his sounds and string more syllables (at least three) together.

He enjoyed the activity for about 15 minutes and then was "all done."

She left the beans for us to play with another time.  Feeling inspired, we took the bowl outside and worked on scooping. At first I gave John Michael some small measuring cups to scoop and transfer, but after a while, more ended up on the patio than I'd hoped. So, I came up with another idea... to put another container inside the bigger bowl and give him smaller tools to work with. A small medicine cup and a medicine spoon worked well for scooping and transferring into the smaller container and was a lot less messy. He stayed with this for almost 30 minutes.

Another fun sensory exploration tub to make is colorful rainbow rice. I've made colored rice before, but this blogger, Pink and Green Mama, shows how to make it much prettier (and cleaner) than mine. She suggests adding Purell to set the color.  I love her blog for art ideas. Most of the ideas I use for my older kids, but this one struck me as something easy we can do for our kiddos at this particular age. Of course, if your child still puts everything in their mouth, I'd hold off on this for now. I've also put colored rice in a clear water bottle and filled it with small things (pennies, dice, beads, etc) for a "Find It" type activity.

Milestones and More...

I know... I've been a serious blog slacker, just trying to get away with a few extra words on Wordless Wednesdays, which often turn out too "wordy". 

There's been so many good things going on lately, but I haven't had the time to sit and write.

Last week was a huge week, culminating in an exciting weekend.  Friday night was the Saving Sofia Crab Feed and Silent Auction for our friends Jennifer (Three's A Charm and Saving Sofia) and Hector, who are adopting beautiful 13 month old Sofia from an orphanage in the Ukraine.  Sofia has Down syndrome and needs her new mommy and daddy and brothers desperately.  She has no idea how fortunate she is that another family values her so much that they are willing to make a huge financial and emotional sacrifice to get her.  The crab feed and auction was a huge success.  Lisa of Genetically Enhanced, uber-organizer extraordinaire, posted some pictures of the evening (including my 28 week prego belly).  Thank goodness black is "slimming."  Ha ha!  It was a fantastic turnout and so great to see familiar faces from the local Ds community. 

Then the next day (last Saturday), we attended a family day with kid activities and parents' sharing sessions through our local Down Syndrome Information Alliance.  Doug and I were facilitators for the 0 to 3 year old parent sharing session and enjoyed chatting mostly with friends and a new couple we'd just met.

Fast forward to this week and I'm feeling very behind in blogland.

John Michael has met some great milestones in the past couple months.  His new thing is running, stomping his feet, and kicking a ball across the yard.  His gross-motor skills are awesome and his upper body strength are very good.  He can pull himself up on almost anything.  He loves to climb and has added climbing up the girls' bunk bed ladder to his list of accomplishments, much to my dismay!  A couple days ago, I heard SILENCE, which around here can mean trouble.  I checked the girls' room to find John Michael standing at the top rung... not sure where to go next.  Anna (big sis) now has the added burden of taking the ladder down every morning and tucking it away.  Better safe than sorry!

John Michael's communication skills are blossoming as well.  He is saying STOP (dah), GO (doh), UP (ub), DOWN (dow), IN (in), OUT (oud), MORE (moh) and signing, nodding his head for YES.  He finally says Moo for cow.  Not sure why that one was so hard.  His Speech Therapist is trying to get him to say two different syllables together, like BA-BY, MOM-MY, and DAD-DY for starters.  She also wants him to try to get the ending sounds of words like HO"T", PE"G", etc. and not just the beginning sounds.

He is quick to sign the words he knows and will often sign or make a sound if he sees something familiar to let me know he sees it.  If he hears an airplane or a siren, he touches his ear and makes sure I know he hears it and then I'll identify it for him.

I love this new explosion of communication.  It seems he's confident in his gross-motor to the point that it's now second nature and he can focus on the other stuff.  He still needs help with stairs and will either reach for my hand or crawl up and down as necessary.  He has stopped pulling hair, dumping the dog's water bowl, listens to instructions better, helps to clean up when asked, and lets me know how much he understands.  Occasionally he still hits, but this is less frequent as well.  I just love this little guy -- he never ceases to amaze me DAILY!

I took some video with my camera yesterday of John Michael kicking a ball, climbing up the slide and saying a few words.  For some reason, my Microsoft Movie Maker software didn't recognize the MP4 video files so I couldn't splice them together. 

http://www.youtube.com/watch?v=ER69AEol4Ic  John Michael kicking a ball

http://www.youtube.com/watch?v=t8L5e_gvtOo  John Michael around the yard and up the slide

http://www.youtube.com/watch?v=I1xf1sQZqFw  John Michael laughing and then going down the slide

Can someone tell me how to embed a YouTube video into my blog post?  I've always done it a different way... but it's not working.

Signs of Spring

Nothing says Spring like...

Short sleeve shirts and shorts

Sitting on a bench, soaking up the sun

A scoop of Thrifty ice cream

The sounds of happy children
Smiling faces, basking in the light

Bright blue skies

Birds flitting and singing in the trees

Bright green growth on trees and plants

Signs of Life and Resurrection,
Hope and Renewal

 

Happy St. Patrick's Day. 

Not being Irish, I won't be making corned beef since no one in my family likes it.  BUT, I am making a gorgeous green pistachio pudding cake for dessert.  Can't wait to try it.

Wordless Wednesday -- "That was easy"

This is how I found John Michael while unloading groceries from the car the other morning...  Sitting on my coffee table (first time I've seen him do that), watching Yo Gabba Gabba and repeatedly pushing on Nic's annoying "That was easy" red button from Staples that he'd traded for from a classmate.  As if to tell me, "that was easy" getting up on the table.  Hilarious!

4th Grade Letters -- These Kids "Got It"

Yesterday, I received a beautifully bound book of thank you letters from the 4th Grade class.  This was in response to the talk I gave on Down syndrome and the R word.  If you didn't see the presentation, click on my previous post from 3/3/10 to see what it's all about.

I am deeply moved by their comments.  It's clear to me that some of these kids really got the message.  Hopefully, when this class is in 8th grade and John Michael joins them at the school in Kindergarten, they will still have that message inside them and keep a watchful eye out for him.

Below is a sampling of some of the letters.  You can click to enlarge.  One of my favorite comments is from Lenny (#5).  He wishes he were like John Michael.  Jack (#2) says he will never say the R word.  Devin (#7) thought John Michael was the best part and getting a high five from him.  I LOVE it!

Be MOVED!

My talk on Down syndrome and the R Word

If you hadn't heard by now... today is the day to SPREAD THE WORD TO END THE WORD.  That word is Retard and Retarded.  We call it the R word.  The principal at my kids' school (TK to 8th gr) asked me to speak to the student body today... all in all about 250 students.

I gave this presentation two times today, March 3, 2010.  The first talk was geared toward TK (transitional Kindergarten) to 3rd grade students.  The second talk, which are the slides below, was for 4th through 8th grade.  Since my kids go to a Catholic school, I included the faith component on a few slides.

Both presentations went very well -- the students were quiet, attentive, and asked great questions.  One of my favorite questions from the older kids was, "How did you feel when the doctor told you John Michael had Down syndrome?"  I answered honestly and told her I was very sad and afraid, but the doctor told me to love him like I would any of our other kids and in time I would learn about Down syndrome and what it meant for our family. 

I was asked about John Michael's life expectancy, whether I thought he would go to college or marry, what kind of learning problems would he have, what other health problems do people with Ds have, why is it called "Down syndrome", and why am I pregnant.  That came from a young student... I thought it was funny.  One girl asked if John Michael got more attention than kids like her.  I smiled and told her, "YES!  But that's because he's got the cuteness thing going for him right now.  I wonder how many people will pay attention to him when he's an adult and they look at his face and decide they don't want to talk to him."  That's why I'm doing this... to hopefully smooth out an easier path for John Michael and his buddies.  Only time will tell.  One boy asked me why there were blue dots on my slides.  OK, so not all the questions were fantastic, but in general, the kids kept raising their hands and I finally had to stop them.

After discussing Down syndrome and the dignity and value of each person, I spoke about the R word... emphasizing that we need to make "respect" the new R word.  I think most of the kids got it and afterwards I invited them to sign posters I'd made up with the r-word.org graphics.  After Q&A, I invited John Michael to come up and say 'hi'.  Nic brought him up and John Michael smiled and waved at everyone.  Many kids got up and crowded around JM to give him high fives.  It was very cute.  Then he would walk away and they would literally chase him to be with him.  And, yes, he put on his cuteness big time! 

I am posting my slides, but I ask that you not use them without my permission.  I put A LOT of time and effort into this presentation, neglecting my family's needs for many nights... but I do want to share the content with you.  If you want to use my information, great... but please do not use any of my personal photos.  My daughter, Anna's constructive criticism was that I should've included more faces/ages of Ds.  I agree.  Nic also said it would be nice to incude well-known people with Ds, like Chris Burke or others that really stand out as self-advocates.  Another good idea.  This talk was a starting point.  The feedback has been great so far.  The video clips were really what tied it all together and made it a much more interesting and relevant presentation.

I guess the saddest part of the day was when the kids and I were all settled in the car and ready to go home.  Anna said a girl sitting behind her whispered "Retard" through most of my talk.  I wasn't surprised by that particular girl, but it still bothers me.  And someone else heard the "R" word within 5 minutes of my talk finishing.  Those kids don't get it... YET!  I hope they grow out of their immaturity or perhaps that one of their friends will have the courage to ask them to stop saying it.  We'll see...

So what's the big diff?

John Michael made quite an impression on families at the park yesterday.

You could say he was his own self-advocate.

A walking poster boy for the "We're More Alike Than Different" campaign.

He walked up to children and waved. One little boy kissed John Michael on the cheek and then put his head on JM's chest.  Very endearing.  John Michael didn't seem to mind at all. 

He walked up to adults, tipping his head to the side and smiling, until they would acknowledge him.

He played "soccer" with the 4 to 6 year old kids, chasing and hitting the ball with his hand or kicking it.

And generally made people smile.

So, what's so different about that.

Well, actually, it is different.  None of my other three were quite as social as John Michael.  It's impossible to go somewhere without someone talking to him (sometimes ignoring me!).  There is a difference, but it's a good one.  In so many ways he's like every other kid, but I like the fact that his personality makes him stand out... in a good way.  :-)