Friday, September 20, 2013

(3) on the 21st: A Blog Hop

Thanks again to Meriah for hosting this month!  Blog hops are fun, and of particular interest to me these days.  I feel like I let my blog lapse over the summer and have lost most of my readers and commenters.  It's been a little depressing, actually.  I vow to do more reading of all the blogs out there, and hope I can woo some peeps back to my own ramblings...  Blog hops are GREAT ways to do this!  :-)

The rules today are to post One Truth (about Down syndrome or our lives with Down syndrome), One Tip (Ds-related or related to parenting a child with Ds), and One Photo (easy!). 

So...here goes!

One Truth:  People with Down syndrome have a MUCH higher chance of developing early-onset Alzheimer's disease, with a 50% chance by the time they're 50, since they have the presence of beta amyloid plaques (the same thing that's present in the brains of Alzheimer's patients) in their brains from birth.  These plaques build up over time, appearing earlier and with more frequency than in the "typical" population.  This truth scares the crap out of me.  Alzheimer's researchers are looking to the Down syndrome population for answers and the keys to combatting the disease for everyone

One Tip:  Don't push.  It takes a lot  of trial and error, tears and frustration to get to this point.  Sometimes you have to realize that you just can't make your child do something that they refuse to do - there are often reasons for their reticence, and for Sammi there are most definitely environmental triggers.  For example, birthday parties.  I have tried her time and time again, gotten upset about it, blogged about it, banged my head against a wall (figuratively, mind you...) over it.  She cries nearly every time we attend one.  Doesn't matter where it's held for the most part, but I think over-stimulation plays a big part.  I've tried everything - pulling her out of the room before the group sings the Happy Birthday song (she doesn't like the sound of loud singing), wearing headphones, you name it.  It's not worth her fear/terror/being upset.  I've decided to pull back on the parties, give them a rest, and understand that there are just some things we can't do

One Photo:  Sammi started soccer a few weeks ago.  While she's not completely sold on it yet, we're working on it slowly...  Hopefully before the end of the season she'll be having a great time out on the field!




8 comments:

Jenny said...

What a great photo!!

Rochelle said...

And hence our trying curcumin lol! Great post. Love her soccer pic.

Lisa said...

Great advice and adorable picture!

karynslater said...

Becca, I LOVE your blog!
I love reading about some of the stuff that is coming up in the next few years for us...Jake is only 2, so it's nice to get the perspective from someone who has traveled a little further down the road and has way more insight and wisdom than I do. So, keep it up, and don't be discouraged:)
Sammi is SO ADORABLE. And man, I could take some photography lessons from you, you're amazing:)

Anonymous said...

As a special ed teacher of Adults with DD, it is a very sad fact that they do develop Dementia / or Alzheimer's, I have 3 older students who right now are starting to experience this, Its very hard as a teacher to see this happen, I work very hard on what they can do. I just can't imagine how their siblings or other family members feel.

Becca said...

Thank you, Karyn!! :-) :-)

Anonymous - thank you so much for your comment! It's something that parents of the little ones don't realize, but the older Sammi gets the more I learn, and this was a doozy... I'm determined to do whatever I can to get this info out and help however I can to make sure a cure is found.

Stephanie said...

Great post for the hop! And I'm in love with your girly and your pictures!!!

P said...

Love your alz summary -- I've seen more dire stats; hope yours are true. Must get cure & research stepped up.

Some moms make a book about fun aspects & positive reinforcement behavior points for less preferred but needed activities. Lots of pics to review before soccer if she likes that.

New reader here! It's fine to take breaks. The good readers & fun folks will find you again. Do a little marketing on Facebook if you want but have faith; your writing rocks -- we find you!!