Thursday, October 27, 2016

31 Days of Down syndrome Awareness - Day 27

Our dinner conversations started with a prayer.  Father, Son, Holy NAKED!  It deteriorated from there.

Part of the fun and the crazy of Riley is getting to hear all of his insane comments first hand.  We try like crazy to keep a straight face and not encourage the insanity but some days I'm too tired to care or he is just too funny.

Another great moment when he dressed himself, headband included, and told me he was ready to exercise.  Gotta have a head band like brother :-)

Almost looks like his twin!  

Monday, October 24, 2016

31 Days of Down syndrome Awareness Day 24

Today we had an IEP meeting for Riley.  Thankfully these meetings don't create quite the stress they used too.  We were able to finalize the support he needs for the rest of his day.  I'll leave out all the nonsense that the District staff creates that doesn't improve the process and jump to the good part of the story.  Riley has support through out his entire day again.   There have been a lot of extra challenges this year with a change in his aid.  If it had been as simple  as changing support staff this fall would have been a piece of cake but nothing is ever a piece of cake it seems.    I am very hopeful that things will start to fall back into routine for him now that he'll have the support he needs.

His team at the actual school building is amazing.  They take amazing care of my boy and push him to be the best he can be.   Can't ask for any thing more than the support they provide Riley and the rest of his crazy family.  I wish his team didn't have to deal with all of the District craziness to deliver what they know is best.  It makes their job so much more challenging than it has to be.

Sunday, October 23, 2016

31 Days of Down syndrome Awareness - Day 23

Roxy thought this was a great place to hide this afternoon.  It was a busy day and I wish I could curl up and hide too.  I thought we finally had a sitter all lined up for Riley that he would love and she let me know this morning that she found a full time job.  Great for her but I am seriously frustrated with this search for childcare.  I never imagined it would be this difficult to find someone.

We spent  time at Gonzaga Prep's open house learning about what school could look like for Rex next year.  I've heard from lots of people that he he really needs to go to Prep.  We leaning that way but anyone out there in cyber land have just a typical student and that went to Prep and thrived.  I hear tons about the 4.0 taking a ton of honors but what about a regular student.  Don't get me wrong he isn't a bad student just not an enthusiastic one.    Obviously he's super excited about their football and baseball programs and the idea of being  part of those, but his mom is a bit more interested in his academics.    If that money tree I planted would start growing this wouldn't be such a challenging decision.

I think the fact that Riley was pretty much a stinker all day just makes it harder.  Its hard to focus on the details when you patience level is wearing thin.   Some days I just wish it was easier to take him places or at least the chance that you could take him places and not listen to him complain the entire time.  I feel like putting a sign on him that says "talk to him at your own risk"  He might bite, yell or insult you.  If your feels get hurt easily back away from the angry elf.

Saturday, October 22, 2016

31 Days Days of Down Syndrome Awareness - Day 22

Chef Riley is in the kitchen again.  He loves a good reason to make a cake.  Good thing Molly is coming to town so we have a great reason to get together and have a cake!

Friday, October 21, 2016

31 Days of Down syndrome Awareness - Day 21

One topic that is hard to avoid when you are talking about Down syndrome awareness is the fact that some where between 73 and 95% of pregnancies with a prenatal diagnosis of Down syndrome are terminated.  The statistics vary a little but the point is that pregnancies that would otherwise be wanted are being terminated simply because of a Down syndrome diagnosis.  Here is a link to a recent article on the topic.

MARK LEACH OCTOBER 13, 2016 GONE: estimate reduced by 20% of people with Down syndrome in United States

I should frame this by saying that I do not believe in abortions.  That is my personal belief.  Your beliefs may be different and that is OK.     It is OK if we disagree but  I want you to really think about the statistic that you just read in that article.   Here it is again for you reading ease :-)

  A 2012 study estimated that about 74% of pregnancies with a prenatal result for Down syndrome are selectively terminated, i.e. a 74% termination rate. But, that does not equate to a 74% reduction in total births of babies with Down syndrome. This is because many parents do not opt to have prenatal testing and (as reported in this post) more women than ever are choosing not to abort following a prenatal result. Plus, not all pregnancies carrying a child with Down syndrome will result in a live birth due to natural miscarriage (as reported here). Therefore, while there is a 74% termination rate, only 30% of all live births are reduced due to selective abortion.

We knew prenatally that Riley had Down syndrome.  I don't share that to claim to be better or have a stronger moral compass than anyone else.  I say that because I can also say it was one of the scariest times of my life.   I felt scared and alone and not capable of parenting a child with special needs. 

 There are more prenatal tests available now than ever before and they are easier and less intrusive than ever.  I don't think prenatal testing is bad.  I will always be grateful for the time I had to prepare for Riley's arrival.  I stressed and planed and cried and stressed and cried some more during that time.  Honestly I still had to look and make sure they got it right in the delivery room.   As stressful as it was I was able to read and research and grieve before I had to balance that with caring for a baby, pumping milk to take the NICU and trying to be a mom to Rex all while being completely hormonally imbalanced after giving birth.  

People that would otherwise be attempting to carry their pregnancy to term are deciding that it is a life not worth living because of a diagnosis of Down syndrome.  They are deciding a child just like Riley isn't able to life a meaningful life full of love, joy sorry, anger and 
sassiness.   Every life is valuable.  I won't lie to you and say everything for Riley is roses.  Sometimes life is hard.   I'll let you in on a little secret though Life is hard at times.  Life isn't always fair but it is always worth living.   

I guarantee you that our family looks at life a little differently now that we have Riley.  We celebrate more of the little things.   We try to remember that we are all different and that being different is ok.  We laugh a lot!  I hope that by sharing our family others can see the value in the life that Riley is living.  

Thursday, October 20, 2016

31 Days of Down syndrome Awareness - Day 20

 Riley's 4th grade gen ed teacher uses a project based approach to homework which typically makes it something Riley can accomplish.  This week we read a fun story about a little boy going on a grand adventure.  We were given options to make a map of our own adventure, a story poster or to write a recipe for an adventure.  Riley gave me all the ingredients for a great camping adventures.  He says I just want to talk about it.  Which is his way of telling me that he'd tell me what to write.  He did make the list completely by himself.  He knows how to have a camping adventure!

Then we made a video of Riley reading his recipe for a adventure.  So technically we are supposed read the story the first night and then pick a project each of the remaining nights I take a little liberty for our sanity and we typically just complete one.  It works and typically Riley is cooperative.

Wednesday, October 19, 2016

31 Days of Down syndrome Awareness - Day19

Tonight's post is brought you by the letter D.  DINOSAUR!!!  This was a perfect costume for my little dinosaur lover.   He used the pick up line "You like dinosaurs?' All summer to make new friends.  More than one of the parents on Rex's baseball team fell hook line and sinker for that line and ended up having very lengthy conversations about Riley's favorites.  Riley will be wearing this treasure for years to come.

I think that extra chromosome comes with a little extra love of the dramatic.  Its seems to me that most of the kiddos I know with Ds really enjoy dressing up and imaginative play.  One of life's many mysteries.

T Rex arms