Tuesday, July 2, 2013

BLOG HOP! What Mysteries do You Want to See Unraveled for the Future for Your Child with Down Syndrome?



Let's face it, our children are pretty mysterious.  Down syndrome is not a simple thing with simple answers, and every day parents, caregivers, educators and physicians struggle to figure out what to do.  What works for one may not work for another.  Therapies, lesson plans, behavior plans, medical interventions, treatments...everything. 

There are some pretty commonly-occurring factors in the lives of people with Down syndrome, some or all of which are important to each and every one of you.  I have my own list of issues and unknowns that I would love to see resolved within Samantha's lifetime, certainly sooner than later. 

For one, CHD (congenital heart defects).  Samantha was born with a hole in her heart, allowing oxygenated and un-oxygenated blood to mix.  It required surgery when she was 4 months old.  Approximately 50% of people with Down syndrome have some sort of heart defect.  It's a lovely product of that extra chromosome.  I can only count ourselves incredibly lucky and fortunate that she did not have some of the other health "products" such as lung issues, leukemia, thyroid issues (although I have heard it's a case of when she will develop a thyroid problem, not if...), and so, so many others, too numerous to list.  And, while Samantha's heart was fixed by the brilliant surgical team at CHOP, there are others that may be too complex to treat, or may need to be monitored closely for life, and children with Down syndrome are still being born with this condition that I would love to see gone one day.  For now, not enough is known about its cause other than it just happens.  Perhaps one day...

Another mystery my daughter's genetic biology holds that is so important to me is the link between Down syndrome and Alzheimer's disease.  That link is definitely there, but when, when, WHEN can this be fixed?  When can we find a cure?  I'm honestly shit-scared (pardon my French...) of this.  Both of my grandmothers had Alzheimer's when they died.  It's called the long goodbye, and with good reason.  It's heartbreaking and tragic, and I know this particular card is doubly-dealt to Samantha.  People with Down syndrome are likely to develop Alzheimer's at some point in their lives with much more frequency, generally much, much earlier than someone with a typical chromosomal make-up.  Find the mysterious link here, and perhaps a cure can be found for the entire human population as well.  Our children hold a key to a very big, very far-reaching mystery indeed.

Cognition is a hot-button in the Down syndrome community.  I will touch it very gently here.  I'm not saying I want to make my daughter different, or to take away Down syndrome - on the contrary!  I LOVE who she is, and Down syndrome is certainly a part of her.  But I know what kinds of struggles await her and others with Down syndrome.  Will she be able to effectively count change to make purchases?  Will she be able to remember and learn the tools necessary to live independently and safely?  Short-term memory is a big issue riding on the extra 21st.  If I can help alleviate some of those struggles by increasing her memory, by helping her to retain the tools she'll need to be a productive, healthy, independent person in society, then I'm all for it.

Many struggle with apraxia, gross motor development issues, vision and hearing loss, etc.  What would you like to see explained, researched, lessened?         

Today I am braving the unknown of another sort...I am creating my very first, my very own, my very experimental, Blog Hop!!  This is really a big deal for me, and I'm seriously hoping it doesn't fail to produce.  Then I guess I'd have to call it a Blog Hop Flop...har har har...  Anyway, my point is, this is a conversation that I really want to get started amongst bloggers, and amongst friends.  I have ulterior motives here, and would love to hear what you've got to say on this topic.  If you are not a blogger or you don't want to post on this topic, please, please leave me a comment with your thoughts below!    

We all have different points of view, different experiences, different dreams for our children and loved ones with Down syndrome, all of which shape our lives, our very existences.  And somewhere, sometime, someone will come along to help us answer our questions, to hear our pleas, and to bring results.  I know it.  But as a first step, I'd love for you all to bring it to the table by telling me what mysteries about your child you would like to see unraveled in the future. 

I'll run the Hop through Saturday, July 13th. 

Here's how:

In the Link Title/Blog Title field, please type the name of your blog and the name of the post, in this format:  Blog Name: Post Name.  In the link field, please paste the link to your post.  Click Enter.

Simple!

And, somewhere in your post, please link back to this post and encourage others to join the Hop.  Share it on Facebook, in your groups, wherever.  Trust me, this is not something I will do often, but as my first attempt, please humor me and play along.  :-)   

 

18 comments:

TUC said...

Very thought-provoking. One thing that struck me... how sometimes it is assumed that personality, or one's essence is connected to cognition and might somehow disappear or be negatively altered if cognition were improved. I don't think the core personality is based on IQ... not anymore than it would be based on a CHD or being predisposed to Alzheimer's.

Blog hop flop... ha ha ha. You are so funny. I will try to come up with something and jump on!

Becca said...

Excellent point you make, Unknown Contributor (I just like saying that spelled out...). I like the analogy of cognition to Ds and CHD to Ds. You're right - same thing. :-) Looking forward to your post!! :-)

Anna Theurer said...

hmmmm. . . very though provoking. You covered most of mine--CHD and Alzheimers oh and leukemia. Then the more silent ones for sensory issues and pre-mature aging (essentially my aunt died of 'old age' at 53yo). I don't have much time to blog but if I get a chance, I would love to hop on the blogging train

Becca said...

I hope you will, Anna! Interesting and so sad about your aunt. I've never heard about that in the typical population. And I didn't really say anything about leukemia, but I will say here that I pretty much held my breath until Samantha was 3, as I'd heard that for the most part leukemia will present before age 3 in children with Down syndrome. I think the whole county may have heard me exhale on her 3rd birthday. Not like I knew that it wasn't possible, but I felt that the risk had lessened considerably. Oh, and I didn't mention AAI, either...

Anonymous said...

My daughter was born with esophageal atresia and a tracheoesophageal fistula that was repaired when she was 3 days old,since she would not be able to have oral feedings during recovery they also placed a gtube and she is transitioning into oral feedings, although she is doing great with oral feedings she tires easily, since she also has a vsd that will be be repaired in the next couple months.I belong to the baby center down syndrome board but have only come across one other family whose baby had the same diagnosis. I am wondering how commonly this occurs in babies that have down syndrome? I could really use some more info.

Tara said...

I didn't know that about leukemia.....need to share with hubby as that is his biggest fear currently. I wonder how well Owen will speak and if he will be understood and accepted by peers.

Becca said...

Anon - I hope someone reading this will respond about your situation. I'm not sure, but I have heard of other babies with esophageal atresia. I'm not familiar with the tracheoesophageal fistula, though. But that extra chromosome certainly is capable of a lot of really random things. Hope she continues to do well, and hope her VSD repair goes well!

Becca said...

Tara - speech is a very big mystery with our kids. How they process sounds and how their brains and their mouths do or don't work together is a big area I think most, if not *all* of us would like to see researched more.

wendy said...

You pretty much covered mine but I would add reading, I want so much for Claire to be able to read especially since she loves books, we seem to really struggle with this. the other would be low muscle tone, she has such a hard time cutting, gluing, writing, etc.

Vicki said...

I love this Blog Hop idea! I've never seen anyone else write about our children as mysteries, but I think that sums it up so perfectly. They truly are mysterious, sometimes delightfully so, other times frustrating and heartbreakingly so.

I will try to come up with something for your Hop and encourage others to do the same. Great idea and you are a great writer. I also just love that brilliant photo of your daughter, she is so gorgeous.

T McCallan said...

Wow so overwhelming..I didn't know about the Alzheimers...I did the blog hop...Hope it worked...Thanks for setting that up!!!

Cindy said...

I didn't see this until after I posted tonight but I will definitely join the Hop in the next day or two!

Karen Prewitt said...

well, I'm not a blogger, but can certainly ask some other mamas what they think and report back! For me, I would love to see the whole "advanced aging/Alzheimers" progress. Personally, our son is very healthy (yes, heart issue, but really a non-issue at this point), cognition-meh, I mean, who doesn't want any of their kids to be smarter, but in the scheme of things, it's not front-burner. I guess since we have an adult daughter, I can imagine our son at her age already, and dealing with issues of older adults. That scares me. Very thought-provoking and I'll share with our group and let you know some comments!

Becca said...

Karen -- thank you for your thoughts and for sharing! And yes, I have to say the same issues you mention about aging are what are most important to me, too.

Flor + Luisa said...

Really liked your idea... came here from My stubborn miss' link, so it is already working1! I am not a blogger but have been reading a lot of them lately. My daughter Luisa's heart was fixed a month ago and fortunately she is doing great. But I have wondered for months why did she have to be born with a hole in her heart. Aside from that, she is a healthy little girl. My main concern I guess has to do with the degree of independence she can achieve as an adult with DS and what strategies can we use to work on that.

Becca said...

Flor - I'm so glad Luisa's repair went well! But yes, that's a big question that I hope will be answered and solved one day. It's amazing how many genetic anomalies, not just Down syndrome, cause heart defects. :-(

Jisun said...

I've been pondering what you wrote here for days now. I really think, for me, the bigger mystery is about how a genetic condition like Down syndrome fits into the greater human family. As for cognition, I really see it as I see all "treatments". I'm not sure it is as simple as simply alleviating difficulties by increasing memory. Drugs have side effects and health risks all unto themselves, not to mention the potential effect of having your child understand that they need to take drugs to alter the function of their mind. These cons my be outweighed by the pros, but it feels like a complicated decision to be sure, also colored by the way we see (and perhaps overvalue) cognitive ability in our society.

Anyways. You brought up a lot of great questions, I tried to write about it. :)

Mardra said...

Thanks for doing this hop.
This was a hard one to write.

Also - it worked - it led me to your lovely blog. SO yea for that :)