Friday, October 31, 2014

Greatest Hits

You didn't think I was going to waste your homework did you? I think the list of 21 is the perfect way to wrap up this long month of 31 for 21 Challenge. While tomorrow we all move on to other awareness months and the next challenge in our world Riley doesn't get to slip off Down syndrome. He works through those challenges on a daily basis. Sometimes he's so good at dealing with the challenges we all forget there are any but some days he wears them like a badge of honor and the entire world is going to know he's having a hard time.
Thank you to all of you who have been reading along and who always support Riley and our family. It truly does take a village and man are we lucky to have such a huge and amazing village.  Typing up this list has me totally laughing down memory lane.  He has made you all do some funny things or said some hysterical things to you.  I feel like this entire month has been a Riley's greatest hits countdown and he is certainly a funny funny boy.  
Here is the 2014 List of 21 Fun Riley Memories

  •  Riley loves people and really loves names and connecting people by family. I can't count how many people have comment how much they love that overtime they see him he says hi - you Jake's mom or you Johnie's dad. 
  • I remember Riley saying "you my teacher !" even when I was just a substitute. But my favorite thing to do with Riley was race with him to line from recess ! I also loved reading with him in Monica's room ! Miss his smiling face!
  • One of my favorites is when I walked into the football game and he yelled, "Hi Liz! You wanna sit with me? (Pause) I have M&M's....." Nothing like a chocolate bribe
  •  His love, kindness and compassion for everyone he meets. The weaker the person the larger Riley's heart grew to envelope them in ways.
  • The smile on my face when he wanted to play let's make a deal to avoid work.
  •  The teacher is nice - lies!
  •  Hearing aids in the toilet, in the sink, in his pocket.
  • OMG you stink!
  • "Sarah wipe my butt!, Sarah wipe my butt!"
  • Chasing him through knee deep snow, while wearing shoes, so he could hide up behind Mary. After hauling him down, he informs me his socks are wet!
  •  Eyes on You Cranky!
  • Watching him knock on the door to the chicken coup asking if they were home. 
  • When he was the Little Drummer Boy in preschool and he spotted me in the audience and yelled "GRAMMA"
  • I love the times he has demanded I come to his room to read books. 
  • He is the only one who can swim vertically with his eyes wide open even under water! 
  • This last summer when we visited Riley and I were home alone and Riley convinced me to jump on the trampoline. I have no idea what possessed me but as you know Riley is convincing. It's a lot harder than I remember but maybe it has something to do with being 63! Anyway I landed a bit hard and Riley stopped jumping, looked concerned and asked, " Gramma are you alright?" 
  • Watching him squeeze under the church pews and kneelers to sit with the Kelly Family.
  • How he called Eva EBA for so long. 
  • How gentle he is now with Colin
  • How he took Kaitlyn on a date and brought her flowers.
  • I really love what he taught me and that he has brought you into my life as a friend.

I certainly am constantly learning from Riley.  Sometimes I am a better student than others.  Riley has brought some amazing people into our world.  I am a better person for the friendships I have.  

Thursday, October 30, 2014

Thru the Years

Riley is a big believer that costumes are year round fun but here are some of the Halloween highlights.  I wish I could find the pictures of Rex in the duck costume.  Shouldn't the first kid be better documented?  Poor kids before digital cameras....  I'm sure Rex is relieved.

Ella, Hunter, Rex and Riley




Wednesday, October 29, 2014


Riley William and William George  

This is one of my all time favorite pictures of my dad.  He and Riley have a very funny relationship they love to pester one another.  Dad isn't known for his skills with electronics and sometimes the TV/cable remotes have been known to get the best of him.  One day he found Riley in the living room and the TV wasn't working.  When dad asked why he had touched the TV Riley simply replied....  I buggin you.

Currently Riley refers to my dad as Cranky.  As he left Rex's football game on Sunday Riley yells "bye Cranky"  while dad shakes his head and smiles.  Not just anybody could get away with that.

Monday, October 27, 2014

A Look Back

The 31 for 21 Challenge is winding down and the end in sight.  So if you have burning questions about Riley, Down syndrome or the insanity we call life let me know.   For tonight I leave you with this little treat circa 2007.  
Rex 5 years and Riley 11 months

Late Summer 2008

Sunday, October 26, 2014

The Linebacker and Cheerleaders

The linebacker and the cheerleader were back at it today.  Rex's team played for the Catholic School league 5/6 grade Championship against their biggest rivals.   It has been a fun season to watch the boys grown and improve.  They have made huge gains this seasons.  Plus I love Rex's class.  They are just a really really nice group of boys and they are fun to watch.

Were all super excited to win. They pulled out a 30-0 win against an undefeated team. Rex even felt it necessary to strike a pose in his champion shirt.  12 year old boys are hysterical!

We decided to stay and watch the 7/8 grade team play their championship game.  While Rex was excited to see his buddies play ball, Riley was excited the cheerleaders would be there.  Someday Rex will be excited for the cheerleaders....  

I gave my phone to Riley to take pictures at one point and here is what came up with.  

Riley of course had to join in the with the cheerleaders as well.  It was a bigger display of his dance moves than normal.  Rex and I may have pretended we didn't know him for a while.

Fun end to a great season.  Now on to wrestling.....practice starts Wednesday.

Saturday, October 25, 2014

The Pink Eraser and other Updates

As you all know to say this school year has been bumpy for Riley is an understatement.  This last week has been a particularly bumpy one.  Monday and Tuesday Riley had great days and then every thing went sideways on Wednesday.  The morning aid was gone and they weren't notified of the right away so the day started out bad and Riley was not able to pull it together the rest of the day and Thursday wasn't much better.  Thankfully Friday he was back to himself and had a great day at school.  

I should start by clearing up what little I know about the pink eraser incident.  I think it was a misunderstanding based on half a conversation.  I've come to the conclusion that they were checking/helping look for the hearing aid that Riley had taken out.  I think in addition to the hearing aid he turned up a pink eraser.  The kid has a serious addiction to pink erasers. I seriously would return them by the handful to his 1st grade teacher because he collected so many of them.   So there is no ongoing pat down going on.  The person that helped Riley to the car that afternoon passed on a message and something was seriously lost in translation.  At the end of the day I am totally ok if they help empty his pockets to make sure the hearing aid is accounted for.  

After this train wreck of a week I was ready to have a sit in in the principals office next week but I'm happy to report I won't have to do that.  Riley's special ed teacher called Friday early evening.  She has been one of the few people on Riley's team that I do truly trust.  She has been put in a challenging position.  She is new to the school that Riley is at and her time is split between two buildings in the district so she is only at Riley's school in the morning.  So she is having to build relationships with a new principal and new general education teachers.  It has been a challenge for her as well.  She called Friday evening because she didn't want me to go into the weekend without the information updates on what was happening with Riley at school.  

We spend 45 minutes discussing the challenges and my concerns and fears.  She addressed head on my fears that he is in a gen ed classroom with a teacher that doesn't doesn't like him and is too overwhelmed to help him be successful.  There is a lot of coaching going on with her and her comfort level with being able to balance it all is improving drastically.  I have to trust that report.  

She had a few ideas to help with teachers anxiety with Riley being "destructive" in the classroom.  Apparently she has a very complicated organizational system for her classroom library and gets quite upset when it takes hours to put back together.  Riley seems to be one being blamed for all of the disorganization but really its something that all the kids struggle to put things back where they belong.  So the special ed teacher has suggested a much easier system that I'm going to help get set up in the classroom.  Imagine this....  we are going to put a pink dot on the books that go in the pink bin and a green dot on the books that belong in the green bin.  I'm going to help get this earth shattering system set up.  Something as simple as books shouldn't cause anyone that much stress.  So a little help from us will hopefully take a bit of frustration out of the equation.  

The really big piece that will be implemented next week is the fact that they had aid hours approved to help Riley.  He won't have a one on one all day but he will have extra support as needed through out the day.  A key piece will be to help with transitions and help him get back on track right away instead of letting things escalate to the point where he is under the table refusing to come out.  She will not be in charge of Riley's instruction.  That remains the responsibility of the gen ed teacher. The aid they have set up to start next week is transitioning from an assignment with a couple of other boys at Riley's school who need less assistance.  So the teachers are already familiar with her and know the quality of her work and she is already family with the school and teachers.  Riley has met her but hasn't worked with her.  

The possibility of Riley moving schools during this school year has been taken off the table.  Unless something really really drastic happens he will remain in his current placement.  They are committed to making him successful there.  During his next IEP all placements are back on the table and really they should be.  I think it is only fair to Riley that we evaluate at the end of every year.  I'd prefer not to keep moving him around but we have to do what is best even its hard.  

FEB 2012


Wednesday, October 22, 2014

Harmony Testing

This evening in my Facebook feed a FB friend of mine posted a picture of a brochure for prenatal Down syndrome testing.  All I saw was the picture of the brochure she posted and my heart sunk. My immediate reaction before I read the comments in the feed was to think about statistics around prenatal testing.    Most sites quote it to be approximately 90% of pregnancies with a prenatal diagnosis of Down syndrome are terminated.   Every time the topic comes up all I can think about is what our life would be like without Riley.

I was brave I scrolled down to read the post and the comments.  Nothing traumatic but apparently you can find out the sex of the baby as well with this test.  I can see why it would be so exciting for parents to have access to this test.  Information on the sex of the baby potentially as early as 10 weeks.  So of course I had to be nosey and ask about the testing and how the conversation went with the Dr.  This test was covered by insurance because of the age of mom and is more accurate that other tests.   So for some peace of mind and the ability to plan and educate yourself it seems like a pretty good option.

As a person who loves information and loves to plan I am all for getting the information and using it to be prepared.  I think that tests like this can be a positive thing in the hands of a Dr that shares information appropriately.  Families have to make decisions for themselves and my personal beliefs don't work for every family.  Now that we know and love Riley its pretty challenging to separate the that and remember not to take it personally.

Its pretty amazing that almost 8 years later and I can remember those moments like they were yesterday.  I remember being done with my first ultrasound and feeling like something wasn't quite right even as I said it was all good and we had counted fingers and toes and the baby was perfect.  I vividly remember getting the phone message from the nurse at the Dr's office telling me about the results of the screening test we had done.  My Dr always referred to the genetic clinic if the screening tests came back abnormal.  I think this is a very abnormal process and not to many women I've talked to had this experience.  The genetic counselor we talked too was very calm and a comprehensive family history and a ton of other information as collected and then based on all of that we were given the statistics.  I honestly don't remember the odds we were given.  I want to say 1 in 10 but I could be totally imagining that and dropping a 0.  It could have been 1 in 100.  I just knew that I had to know for sure one way or another and if that meant a three foot long needle than so be it.  That was a scary time in my world.  My imagination went wild with that needle.  In all honesty it really isn't that long. I hate needles anyway so it isn't like I was taking an up close look at it the day of the test.  The actually process was super easy and fast.  It was the waiting for results that nearly killed me.  Seriously 10 very long days..........

Well obviously we know how those results came back....

Those were scary days.  I wish I'd know a friend of a friend or had access to real people even if just on FB back then.  Lurking on a blog with pictures of a baby with Down syndrome I think would have helped relax my mind a bit.  And this is really the heart of the reason I end up blogging each year during 31 for 21.  Knowledge makes things less scary.  The more people know Riley and his friends with Ds the less scary it is for everyone.  Do you supposed 20 years from now a women and her family will discover they are pregnant with a child with Down syndrome and say "hey when I was in 2nd grade I knew this really awesome kid named Riley" ?