While driving Jake and Sam to Vacation Bible school, where they volunteer for the week, the following discussion took place.  But first the back story.  Jake and April saw Shrek the Musical 4 times in the last 2 weeks!  April has a crush on one of the actors in the play.April:  “I wish I could be a princess like Fiona in Shrek.”

Me: “April you know that’s all pretend just like the movie.”  As I write this it occurs to me what a Debbie Downer I am.

April:  ” I said I wish I could be a princess.”

Me:  ” Well, I could call you Princess April or Princess Joy (her middle name).”

Jake, from the back seat:  “Or we could call you Princess Annoying!”

If I had been drinking coffee I would have sprayed it on the windshield or snorted it up my nose.  As Sam likes to say, “Ooooooooo come back!”

And since the above picture is lousy and I want to show you what Princess April looks like I will post my favorite recent picture of April.Princess April is sitting with her sister Princess Jenny although she prefers to be called Princess Jen.

And one little tidbit to close this post.  Princess April will be in a photo shoot next week for Hoxworth Blood Center.  She is going to be featured in their upcoming ad campaign.  This rock star, blood donating princess has given almost 2 gallons of blood….amazing!

A picture from the last week or so that makes me smile!

 

Sam is imitating Garfield and insisting that this would be Dad’s favorite card.  Meanwhile, stoic Jake has other ideas.  What’s a mother to do?  Buy two cards of course.

If you live in Cincinnati the Cincinnati Art Museum is transforming their parking lot into a beach boardwalk on Saturday June 15 to kick off their summer season.  We will be their enjoying the music, sand sculpting, food trucks, photo booth and more…..

OFF DUTY ASK DAD

I have been in the trenches a long time as far as parenting goes, excuse me while I reprimand Sam because he said a curse word while playing Game Boy, and just recently I had a light bulb moment I would like to share with you.  Most parents that have a child with DS wonder if they will learn to read to which I answer:

Yep, I am talking about sight words.  At the end of this post I am going to reveal the 4 most important sight words you should teach your child but first a story to explain why I came to this conclusion.  At the end of the day when my 25-year-old daughter, 20-year-old son, 16-year-old son and something year old husband are all busy doing their thing I retire to the bedroom closing the door behind me.  At last a little R&R time where I can kick back, read, check Facebook or just watch TV.  During that time the door flies open 5 or 10 times and I am greeted with things like this:Jake was compelled to show me all his ‘stuff’ from his graduation last year and sing me a song that his senior class sang.  Minutes later the door opened again and Sam asked if he could have a snack.  April wasn’t far behind with a request and then several more request from Sam.  It’s not only when I am in my room for some private time but also when I am out of the house and the Hunk is in charge.  Jake called me 3 times during my son-in-laws graduation ceremony.  Of course I had the phone on vibrate and remember that their father was at home with him.  That’s when I realized the first 4 sight words you should teach your younger children.  Put each word on a 3×5 card and go over them daily until they are fully locked in their brain.  And the four words are:

I am making a sign for my door and these 4 little words will be my go to text when they call me if they are home with dad.  Or maybe I will just teach them ODAD and yes in CAPS because I really mean it.

More reading insight to come later.  Remember this is the core of any good reading program.

Dear Mr. Lucas,  May I call you George?  I knew you wouldn’t mind.  So George, I am writing this letter to thank you for producing the Star War movies.  When your first movie came out, Star Wars (now called Star Wars IV, A New Hope) it was 1977 and I was in California living the good life in Manhattan Beach.  Little did I know how much your movies would help me later in life.  I was just one of the hordes of people who paid $3.00 to watch your stellar movie with amazing special effects.  Fast forward 6 kids, 6 moves and almost 36 years of marriage.  This is the reason I am writing to you.This is my son Sam who is 16, constantly moving and happens to have Down syndrome.  Yesterday he had a double hernia repair in a place that causes a male to walk like a penguin for several days after the procedure.  My plan was to let Sam rent two DVD’s to watch after he came home from the hospital and he picked out the original Star Wars (IV) and Star Wars 3 (now called Star Wars VI, Return Of The Jedi).  When Sam returned home from the hospital drugged up on Hydrocodon he looked like this.Drugs didn’t take away the pain but the original Star Wars movie distracted him enough that he was able to endure the pain.  Sam wanted me to sit on the sofa with him and watch the movie.  I was transported back to 1977 until a few minutes later I thought, “Hey, these special effects aren’t so special in 2013.”  I also thought, “Princess Lea you are in desperate need of a new hairdo and wardrobe.”  We sat together watching all the action until I drifted off during the last chase scene which was awesome in the theaters in  1977.

After a rather uncomfortable night for Sam he awoke at 6am wanting to get up.  I was fine with that because movie #3, now #VI was waiting to go into the DVD player.  Only first Sam had to, there is no nice way to say this, urinate.  Because he had (this is going to sound like too much information) a catheter during the surgery it hurt to….pee.  But pee he must or it was another trip back to the doctor for another catheterization, ouch.  George, in my wildest dreams I never thought I would hear myself say this, “Sam, you can’t watch Return of the Jedi until you pee!”  I am happy to report that it worked.  Minutes later he was watching Princess Lea in her very skimpy outfit rocking a new hairdo as those Jedi did their thing.

So George I just wanted you to know that your movies, however they are labeled now, are great for pain management and bribery.  I am forever in your debt for helping my guy make it through these last 2 days.  If any other parents ask me how they can get their boys through this procedure I will tell them, “Watch two Star Wars movies and call me in the morning.”

Sincerely,

A very grateful mother!

PS: Sam is still walking like a penguin but feeling much better.

So much to teach our kids with DS.  I paid bills today and since Sam is already bored on summer vacation(day 1!) I took him with me to the post office.  Light bulb moment….I will teach Sam about why we pay bills every month and what each one is for.  You can only imagine how happy he was with this little lesson.  Oh, and while I’m at it I might as well throw in a reading lesson and work on money skills too.You’ll be happy to know that Sam identified a $20 bill and estimated change.  Then he read all the addresses to me and learned about paying the electric bill, property taxes, car registration, medical bill and Kohl’s (for his clothes).  I am pretty sure he understands the electric bill because he needs electricity to play the Wii.  His eyes did glaze over when I explained property taxes and quite frankly while I was explaining that concept I wondered when I actually learned about that wonderful tax.  Fine motor skills came into play when he took those sticky stamps off that wax paper and placed them in the corner of the envelope.  The only time he didn’t complain was when he got to mail the letters because he got to put them in 4 different mail slots.  For one final life skill I showed him on our licence plate where we will adhere the registration sticker when it comes.

Disclaimer:  Sam’s grumpy expression I am sure had nothing to do with my fabulous idea to teach him about paying bills.  He really, really loved learning about car registrations and property taxes.

A picture from the last week or so that makes me smile.

Yesterday was filled to the brim with a parade, swimming and a Memorial Day Concert.Here the men are headed out to the parade.And here the Hunk and Sam are saluting some Veterans as they pass by.  We teach April, Jake and Sam to stand for the flag and cheer for the Veterans.

In this picture Jake had just greeted all of his friends in the Sycamore High School band and was anticipating the candy that would be thrown and collected.

Yes, that’s Shrek and Company.  There is much excitement at our house about the first summer play in the park, Shrek the Musical, performed by the Eastside Players.  This is the very same park that we walk to daily.  Sam, Jake and April will walk up to see the play….without us.

The parade was great but for me the best part of the day was the Memorial Day Concert put on by the Blue Ash/Montgomery Symphony Orchestra at the town center.

The first part of the concert was dedicated to Neil Armstrong a Ohio native, test pilot, University of Cincinnati professor and astronaut.As we sat and listened to, The Planets, Op. 32: Mar and Jupiter, played by a symphony orchestra I was transported.  We also heard a piano concerto by Rachmaninoff played by a very talented Young Artist Concert Competition winner, Kevin Huang.  In addition we heard Fly Me to the Moon sung by mezzo-soprano, Catherine Fishlock and two friends of Neil Armstrong share their memories of this great man.

Sitting there I started to think about what this was doing for April, Jake and Sam.  They weren’t listening to their typical music…Katie Perry, One Direction and Psy/Gangman style.  They were hearing great music played by a full symphony orchestra and sung by a mezzo-soprano.  I could almost hear the new brain synapses being made in their heads.  It was like we were all getting a brain cleansing from the world of mediocre music.…lather, rinse, repeat and then fill our brains up with the incredible music being performed.  It was truly music therapy.

To close out the first half of the program the symphony played music from Apollo 13 and Star Wars: Main Theme.  Of course Sam had to help conduct.The next performance of the Blue Ash/Montgomery Symphony Orchestra will be on July 3rd.  We will be there because once again it will be time for a brain cleanse: lather, rinse, repeat!

Today is Memorial Day a day we remember our fallen heroes in the military and now also the first responder heroes from 9-11.  We as parents must teach our children about the importance of the day.  Why do we go to parades and what are the parades about?  Why are all those flags on the graves and what they mean.  And yes, we must teach them to our children with Down Syndrome too.  As strange as this sounds today would be a good day to take your family to a cemetery where you can view the decorated graves.  We went yesterday to Spring Grove Cemetery.

First we viewed the Civil War graves and Jim explained how they were laid out and why.  It was a great time to talk about the Civil War and the sacrifices made for freedom.

Then we went to see the grave of our friend Scott Morrison who lost his life in Afghanistan.  Scotty will always be remembered by our family for the way he interacted with and showed kindness to April, Jake and Sam.  He was a great friend.Yes, there were tears as there always are when we visit Scott’s grave and that’s OK.  After the tears we remember all the good times we had with him and how proud we are of him for his service to our country.  April even sang 2 verses of the Battle Hymn of the Republic which seemed very fitting.

We finished our tour of remembering by viewing 2 tons of steel from the World Trade Center and pictures of the 343 firemen that lost their lives when they bravely rushed in to save the people in the twin towers.Later this morning we will attend a Memorial Day parade and while we are enjoying that parade we will remember why we have it.  Keep the memories of these brave people alive by teaching your children what today means.

Someone knocked on our door at 6:15am this morning.  When I looked outside I saw our 17-year-old next door neighbor Nathan.  Hmm, I guess he had locked himself out of his house and needed his spare house key that we keep here.  Imagine my surprise when Nathan asked if Jake and Sam could ride to school with him.  I was stunned.  The boys ride the bus and now that Nathan is 17 he can drive to school everyday.  This act of kindness by Nathan was a very big deal for the boys.  They would be parking in the lot like everyone else and walking in from the lot like everyone else.  Here is an example of inclusion at its best. And yes I had tears in my eyes as they left for school.  Thank you to our incredible neighbor, Nathan.  You made a mother very happy!

Do you have big plans for the weekend?  Jake, April and Sam are going to Kings Island with a friend which means the Hunk and I are having date night.  On Sunday we will go to Spring Grove Cemetery to take part in the Memorial Day events.  If you live in Cincinnati be sure to check their site.

Sam is a master at knowing what buttons to push to annoy his siblings.  For example he loves our fat dachshund, Max the Wonder Dog, and gives Max lots of attention when he comes home from school.  Later that night as Max takes up his place at the dinner table, under the table with his head on the Hunks leg whining, Sam starts calling him ‘Mutt’ (Max, not the Hunk).  This drives April and Jake crazy and of course they have to comment on it.

He knows how to get to April.  The minute she walks in the door from school he says, “Hi Princess!”  April hates it and a verbal battle begins.  Personally I would love it if someone would call me Princess or better yet, Her Majesty.

And yes, he knows Jacob’s ‘buttons’ too.  All he has to do is talk like Sponge Bob or whisper something to him under his breath.

Whatever team April or Jake are rooting for he chooses the competing team.  The guy does like to bug his siblings.Let’s just put that myth to rest that children with Down syndrome are like an angel sent from heaven.  Children with DS are like any other kid when it comes to siblings.  Fortunately Sam has many other redeeming qualities.  What kind of sibling dynamics are happening at your house?