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" ?

Tuesday, October 21, 2014

Opposites Compliment

Normally during the 31 for 21 Challenge I reserve the post for my list of 21 Fun Facts about Riley.  I decided I wanted to take that list and share it with you all.  Riley has such an amazing support system or fan club as I like to call you all.  So I'm giving you all a little bit of homework and the list of 21 is going to be published tomorrow.  I need you each to send me a little something about Riley.  I'll leave it up to you what you want to share.  A funny story, something he's taught you,  a horrible name he called you...  what ever strikes our fancy.    Shoot me an email or a FB message and we will see what kind of fun list we can come up with.





  Currently its football season at our house.    We'll roll straight from football into wrestling, basketball and then onto baseball.  Rex is typically happiest when he is chasing down a ball of some sort.  He isn't the loudest flashiest kid on any team he typically just keeps his head down and does his thing.  He's loves to be in the middle of it and loves the time with his buddies.  Its almost comical to watch him blush when someone compliments him on a game.  He loves it but being the center of attention is not is comfort zone.   Get him in setting with just family or a close buddy and he is a chatter box that is animated and is fun to listen replay all the best parts of every game.  Funny funny boy I have.






Riley is pretty much the polar opposite of his big brother.  This boy loves to be the center of attention.  He uses the hundreds of team practices and games as a way to make his way right to the front of the crowd.  This last weekend was a play off game for Rex's team.  The 8th grade cheerleaders came to cheer not he boys.  It was a big deal......and they brought pompoms and megaphones.  Riley's version of heaven right there.  


I have two sweet compassionate boys but man do they deliver their charm in drastically different methods.  Their personalities compliment each other well.  Once in a while people ask if I think Down syndrome has caused certain personality traits in the boys.   We will never know what either Rex or Riley would be like if it wasn't for that pesky extra chromosome.  Regardless I like the results.  

Monday, October 20, 2014

Some Call it Desperation

As we have moved through the month of October and the 31 for 21 Challenge I have tried to share an honest picture of our world.  We aren't wallowing in Down syndrome most of the time.  I think like all families we are trying to cope with day to day life and making sure our kids have the most opportunities to be healthy and successful.   Honestly the truth be told I my goal and motivation behind most things is how to make life easier.  

Riley isn't sleeping well -  then how are we going to get him to sleep better.  Rex is coughing up a storm -  how are we going to get his asthma under control.  The list goes on and on.  

 Both of my boys have health issues.  Rex seems to outgrown the worst of  his asthma but he kept us on our toes for along time.  Thankfully the days of driving to daycare with the portable nebulizer going in the back of the van are behind us.  Riley has been so lucky not have to deal with the really big health issues that so many children with Down syndrome have.  We don't have life or death issues going on so we get to work on fine tuning things for him.  Down syndrome presents a unique issue in the fact that Riley's parts are small. The facial anatomy of Down syndrome predisposes him to ear infections.  The middle ear is aerated by the eustachian tube, a small tube that goes from the middle ear space to the area behind the nose in the nasopharnex.  Upper airway infections and allergies can cause the eustachian tube to become swollen, trapping battery and causing ear infections.  Low muscle tone affects the opening and closing of the eustachian tube as well,  which can cause negative pressure to build up in thimble ear space, leading to fluid retention and infections.   He has tiny ears on the inside and the out.  The short version is his snot just doesn't drain very well.  A typical cold for him will usually end up with an ear and or sinus infection that requires a trip to the Dr and an antibiotic.  He has had tubes in his ears since he was about 9 months old and thankfully we are still on that original pair.  


I'm a big believer is modern medicine.  I'm all for a well used antibiotic but I also am all for trying things to prevent things naturally.  I decided to explore the world of Essential Oils this summer.   I have a few friends that have gotten into them and had success helping their family deal with a  variety of issues.  I decided to go with a company called  Young Living.  This is just one of many companies that are available that has high quality essential oils.  I don't want to debate the qualities of one company over others.  Young Living works for me and I have found oils that work for my family.     Young Livings website gives this short description:  

The next time you drive by a field of fresh peppermint or hike through a pine forest, breathe deeply—you’re experiencing the soul-soothing power of essential oils. But essential oils are more than nice scents; these powerful plant extracts are your path to the lifelong wellness we are committed to helping you discover.
At the intersection of cutting-edge research and traditional wisdom, Young Living formulates targeted, essential oil-based wellness solutions that empower you to dodge harmful chemicals, energize your life, ditch stress and negativity, and reclaim your natural radiance. 
My original focus was to help Riley in a few key areas  including trying to boost his immune system,  help him focus and also to help his sleep.    Riley seems to really like them.  He asks for his smoke every night.  I diffuse a variety of oils directed at helping him relax and promoting sleep.  Lavender is a common oil we use.  When he had a cold we added immune boosting and purification oils.  Most of the oils we choose to use with Riley can be added to coconut or other house hold oils and massaged into the bottom of his feet or on the back of his neck.  This has become a nice few minutes that we spend most nights calming before bed.  I figure even if the oil does nothing more than encourage a few quiet moments before bed it can be bad.  We have started adding oils to his bath as well.  I use epson salt as a quick and easy bath salt to add the oils too and now Riley asks for his sugar in his bath.  
I've started getting braver in how I use them.  Rex is a bruised mess after football.  I've been using a few on him to help promote the healing and relaxation of bruised muscles.  Basically a natural icey hot type product.  Justin has been the biggest skeptic in the house.  He makes fun of me and was pretty sure I was wasting money.  He is becoming a big fan of an oil blend called Peace and Calming.  He can actually feel a relaxing calming feeling when its applied to the back of his neck.  I'm not the biggest fan of that one because I don't like the smell of patchouli oil but if it helps promote calmness around this house I'll take it.  I used a lot of peppermint with a sinus thing I had to help me feel like I could breath and to ease headaches.  There are so many simple things we have done to help make life just a little calmer and easier.  

My mom may have accused me of being a desperate women when I started.  I'm the first to admit that  is a true story.  You live with a tired Riley for a few days and then we'll talk.  Riley's behavior is often our first indicator that he is getting sick.  It is amazing how much more sassy and stubborn he gets when he is focusing all of his energy on fighting off a cold.  There is a certain amount of sassy Riley that we expect on a day to day basis.  It is a part of what makes him who he is but man there is a line he crosses that is simply exhausting to parent.  So yes I'm a desperate mom trying most anything to keep my nice boy around and not his evil twin.  


Sunday, October 19, 2014

YOU... BAA LIKE A SHEEP!!!

Yesterday the boys and I headed out to my mom and dads for a party.  Father Pat was visiting from Ireland so the entire Reardan church was invited to gather and visit.  While Father was in Reardan he became part of our extended family so it was fun to see him.

Riley loves a good party and he knows how to hold court.  He has met most of these people when he has sleep overs at Gramma and Grampa's and goes to church with them.  They have certainly heard plenty of Riley stories.  Gramma isn't shy to brag about all her grandchildren.  

At one point I walked out side where a large group has gathered and I hear Riley saying  "YOU KNEEL DOWN"  when I look over there is a man actually leaving his chair to kneel down and Looks to Riley for further direction.  Riley then says  "BAA LIKE A SHEEP"  And sure enough it starts to sound a like a farm with the animal noises.  He was bossing these grown men around and they listened.  Its insanity.

I've never seen adults do such insane things for a child before.  Riley has a strange ability to get people to do what he wants.  Such as the night he had Gramma and Grampa playing in an air band while we ate a Chinese restaurant.  Its the strangest thing I've ever seen and if you know my dad in real life you'd know just how insane it is to see him playing the air drums.


Saturday, October 18, 2014

Pudge and Biggs: What Fuels the Helicopter?

Tonight I was trying to gain some inspiration for my 31 for 21 post and stopped to read of a few of my favorites.  The mom that writes this blog below is hysterical and real.  Her life is chaotic and she paints the story beautifully.  This particular post really hit home with me.  I think its a great read for all my teacher friends.  Just a little something to file away as you deal with IEPs for kiddos in your classrooms.





Pudge and Biggs: What Fuels the Helicopter?: Recently, I've been fielding a few emails from parents who are faced with the task of writing their child's first IEP or working to ...



Tune in tomorrow.  I have some good Riley stories to share.

Friday, October 17, 2014

Love Songs


Riley sings to Maddy almost every morning during the car ride to school.  This is his current favorite.  He makes me smile!  The video isn't the greatest but its still pretty sweet.


video



Thursday, October 16, 2014

The Insanity in My Head

I'm not even really sure where to start with this question and really its a whole bundle of questions that doesn't get tied up with a nice bow.   You'll have to forgive me if I don't make much sense.  I've been thinking a lot lately about why I care so much about what type of classroom Riley is in at school.

We have pushed and pushed Riley from day one.  Seriously the hospital OT or PT saw him in the NICU.  Then we started at the Guilds School and then on to private OT, PT, Speech and tutors.  All for what?  Riley's happiness?  I'm not so sure he is happier than he would be if we hadn't done all of those things.  He's happiest when he is with his brother or his friends.  None of these activities have given him his hysterical sense of humor that we all love so much.

So are we pushing and pushing for us?  Am I the one that cares too much about what stinking room he is in and who he is allowed to be with in class?  If he gets moved to a different room that is more self contained is it really going to stunt his happiness and prevent him from making friends?  Could we just over compensate with extra curricular activities and make sure he stays social that way?

They often tell us he does so much better work in small groups and one on one situations.  I am sure most kids would.  Seriously isn't the entire issue with classroom size...the bigger the class the bigger the distractions. Are we slowing down his academic progress by insisting he spend a large chunk of his day in a general education classroom.

 Riley has trouble transitioning from one activity to another.  Sometimes he just needs more time.   Sometimes he is just a stinker.  He knows when it is time to line up from recess.  He knows what is expected of him and yet he chooses to keep doing the activity that makes him happy.  No matter what classroom he is in he'll need to learn to come in from recess.

Riley is just about to turn 8.  He doesn't have the ability to make choices that impact his future.  His hold world is about immediate happiness.  Listening to his teacher doesn't often bring him immediate happiness so often he doesn't choose to listen to her.  I know that while doing math today doesn't make him happy it will ensure that at some point in the future he is capable of managing a bank account and budget so he can live independently.  Is that more or less important that learning to act appropriately in a social situation, or learning to make friends with new classmates.

I'm tired of having to work so hard to convince people that my child is capable and worth the extra effort it takes for him to be part of the group.  That seems to really be the core of all of this...  he deserves to be treated like a kid with potential not a kid that needs to be kept separate from other kids.   Every child deserves that.  Every child deserves to know a kiddo like Riley that sees and navigates the world a bit differently.  I don't think that the message it sends to the kids left behind in that general education classroom is considered.  "Don't act different kids...they will send you away."  They also see how the adults interact with Riley when he is in class.  So many life lessons area taught to all the kids in such a subtle way.  They see when everyone is treated with respect and they also see when every one is not an integral  part of a classroom.

OK I'll stop talking these circles.  These are complicated issues and they confused me daily.  So if you have a crystal ball let me know.....how far to do you push and when do you just throw in the towel and take the easy road.