Monday, October 24, 2011

Day 24: Q&A Part IV

I think this is the last Q&A for this round!  Thank you all again.  And as other questions come up (please feel free to ask them!!), I will answer them in future posts.  This has been so much fun!  (Samantha looks like she's enjoyed it immensely, too...) Oh, and to Pallavi, I love the idea of posting an old pic of Samantha per day, but it may not be quite with that frequency...the old pics are on a different computer than I use regularly, and I'll have to hunt them down.  But I will certainly try every now and then!!  Thanks!  :-)
Q. Would you mind sharing a few of your most frustrating moments related to Raising a little one with Down Syndrome? Have you found youve mellowed with time or become more sensitive?

A. Frustrating, huh? Well, that's a very interesting question that I've been thinking a lot about. It's really tough, because I feel that with only one child, I'm not really qualified to differentiate between the general frustrations of raising a child, any child, vs. raising a child with Down syndrome. There haven't really been things that I would say are frustrating moments that are specific to Ds, but I will say that her first two years of reflux were very frustrating. We were never able to baby-wear, for fear of being covered in vomit at any given moment. I guess if I were to tie that in to Ds, I'd say that her immature digestive system would be to blame. Another frustration would be her unwillingness to chew for the first two years, and the extreme liklihood of her choking if we weren't extra-vigilant. But those are kind of physical, tangible frustrations. I think you probably mean more big-picture stuff. But to be perfectly honest, other than the general worries that we'll always have about her social acceptance and future independence, all the issues are just general child-raising stuff. Oh, yeah, and one more thing...her amazing, astounding ability to be as stubborn as a mule is sooooo frustrating!! Sheesh, that kid can cross her arms and pout like no other...

In answer to the second part of the question, I would definitely say I've mellowed over time.  During Samantha's first year, I was so hyper-sensitive to the fact that she had Down syndrome, I would try to bring it up in just about every conversation I had with just about anybody, including strangers at the store, strangers at the park, you name it.  Part of me just wanted to talk.  Part of (irrationally) thought that people would think I didn't know my kid had Ds.  Yeah, weird, I know, but I felt like I needed to acknowledge it, especially since my general disposition with her was so happy and positive.  I guess I figured others would assume that because I wasn't moping or miserable, I must not know.  Hehehehe, yeah, whatever.    After that first year, it all clicked, and I figured if people knew, they knew.  If they didn't, they didn't, and far be it for me to enlighten them.  It didn't matter - she was my baby first.  Sometimes people who had their own connection to the special needs community would approach me or start up conversation (which I certainly welcomed!), but usually nobody ever said anything, and treated us like any other mother and baby.  As time went on, the only times I ever really got bothered or frustrated (oh, sorry, this could have been added to the first part of the question!) by Sammi having Ds were when we would attend gatherings or birthday parties of "typical" children.  The differences were so in-your-face, and I couldn't help comparing them and getting pretty upset.  I'm sure you've all been there in some capacity.  That, too, has lessened considerably over time.  I still notice it, but am not so affected by it.  My first concern is whether Sammi is happy and enjoying herself, not the things that makes her different from her peers.

Okay, that's it for now!  And tomorrow, my thoughts on MaterniT21... (you know where that post will be going...)


Laura said...

I really enjoyed your Q&A series. As always, Sammi is just stunning!

Anna Theurer said...

I love reading all of your Q&As. I second that reflux is really frustrating. We still have issues but not like we did a few months ago. Nothing like changing clothes 15x a day. Grr!

Anna said...

Thank you for taking alot of thought time before answering those questions. Maybe some of the frustrations we have had are due to adopting a child with Down Syndrome? At 4.5 yo.... Or our locale- Some communities more informed or accepting? I find it very interesting that at a year you had settled into a comfortable place. I found the same with us, I didnt even recognize myself the first 8 months after coming home!
Reflux- My 17 year old had it, we werent able to get a Dr to Diag it until he was 5 yo. The Gastro said it was the worst erosion hed ever seen in a child. I wish I could take his first 5 years back and become more assertive in the beginning.(Grace choked ALOT the first few months too- 4.5 yo and DIdnt chew well.)
I cant wait to see "the old and the new" photos.

Jenny said...

Ahhh, loved this post!! Its reassuring to hear other people have kids that refused to chew at one point or another!! Gives me hope that one day Russell WILL do it properly!!!

And I am just now getting past the "I need to talk about it or tell people about it" all the time phase. It feels good to just go out and if some one brings it up to me fine, but I am not going out of my way to announce the fact that Russell has Ds anymore.

Zoey's mom, Heather said...

Just loving my Samantha photo fix this morning and wanted to tell you what an awesome job you have done this month!

Chromosomally Enhanced said...

I have loved the Q & keep doing it! I like this...I can see that light in our future...I am almost there...and I like it...Ds is not the first thing I think of in the morning or the last thing when I go to fact I forget most days about the Ds and only see a strong willed 2 year old..about to push me to the brink of no return! you have mentioned before to me about Sammi's choking and reflux...I am seeing the same thing in Maddie...less choking manageable reflux and it has been since two...that things have started to look better in the eating department! and lets face it...chewing helps ALOT!! smiles

Pallavi said...

looking forward to the old pics :)

And I must admit checked in here daily to check your QnA posts..
thanks for sharing..