Monday, October 29, 2012

It Matters

Acceptance Matters.  Inclusion Matters.  Patience Matters.  Understanding Matters.  Education and Awareness Matter.

Down Syndrome Awareness Month is about over and...so what?  What does it matter?  Why does it matter that we continue to try to educate the general public about Down syndrome and what it is really like to raise a child with Down syndrome?

Here's why...

According to recent studies, 90% of women with a pre-natal diagnosis of Down syndrome choose to terminate the pregnancy.   90% !!!!  (And that is lowest estimate I found.  Many other estimates are more in the 93-95% range.)   Ninety percent do not want to be "burdened" by a child with special needs.  Ninety percent see Down syndrome as hopeless. Ninety percent of women who receive a pre-natal diagnosis of Down syndrome do not feel that a life like Anna's is worth living.

This isn't a pro-life vs. pro-choice issue.  This isn't a Democrat vs. Republican issue.  This isn't even a religious issue.

This is an issue that stems from a lack of education and out-dated stereotypes.  It stems from the doom and gloom outlook that is given by doctors when they are delivering the diagnosis.  It stems from a lack of awareness in the general public of what Down syndrome really is, and why it is not to be feared.

When the doctor first came to talk to us about Anna and his suspicions of Down syndrome, the picture he painted was not pretty.  There was a lot of talk about mental retardation, developmental delays, common health issues, etc.  If he ever talked about how much joy Anna would bring to our family, or all of things that she would be able to do, I never heard it; I was already swimming in my sea of fear and misery.

I really knew nothing about Ds before Anna.  I had a few out-dated stereotypes in my head, but that was about it.  There was a whole other world out there that I was completely unaware of, let alone wanted to be a part of it.

But, the grief period ends and you can't help but feel the love.  Health issues can be overcome with the wonders of modern medicine.  With early intervention and a supportive school system, developmental delays can be minimized, and your child can grow to their fullest potential. Fears subside as you start to realize your baby is, well, a baby.  For the most part,  life will be normal (whatever normal is).

Children with Ds will have friends and be invited to birthday parties.



They will play and swim and climb.



They will love and change your heart and view of the world.



Nobody wishes for Down syndrome, but some of us get lucky.  Unfortunately, most people will never know how lucky they were.   Ninety percent of women with a pre-natal diagnosis choose to terminate their pregnancy, and 100% of those 90% miss out on what would have most likely been the greatest blessing they would ever receive.

So, it matters that we spread awareness about Down syndrome because the world is missing out on a lot of beautiful people who were never even given a chance to share their magic.

Saturday, October 20, 2012

Buddy Walk 2012

What a perfect day for a Buddy Walk!!!

I won't bore you with a lot of writing... I will just post a lot of pictures! =)

Our group was a little smaller this year because we didn't decided to do the Buddy Walk until the last minute because we had made prior commitments.  But the short notice did not stop God from blessing us in abundance, once again!

Thank you! Thank you! Thank you to everyone who came out to walk with Anna, and to everyone who generously donated to the Buddy Walk!  We could not do it without your help and support!
















The 2012 Anna's Banana Pants Team
Anna is somewhere behind the sign =)
The funny story:  Anna kept stopping and signing "ice-cream".  Finally, she signed ice-cream and pointed...at the ambulance.  Apparently she thought the ambulance was the ice-cream truck.  =)



 It required a look inside the ambulance to convince her that it was NOT the ice-cream truck.  And she never did make it all the way around because she decided to take a short cut across the grass.  Silly girl!

Monday, October 15, 2012

Delayed Does Not Mean Canceled

More facts about Down syndrome...

All individuals with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possess. - ndss.org

Anna definitely has some developmental delays.  She didn't start (properly) crawling until she was 2, and didn't take her first unassisted steps until she was just over 2 1/2 yrs. Her speech is probably her biggest area of delay, and I think her lack of communication skills definitely affects other areas - including her behavior issues I have alluded to.

Though Anna has a speech delay, her receptive language skills, what she understands when we speak to her, are really quite developed.  She understands and can follow directions (when she wants to - the little bugger).  She recognizes and can label (via sign language) all her colors.  She responds to Dora's questions, and she can act out and "sing" the entire Barbie: A Perfect Christmas movie. (I really need to get a video of this - it is a riot!)  You can tell, there is a lot going on in Anna's head that she is unable to express through words...YET.

I say YET, because just because Anna has developmental delays, it does not mean those milestones will never be achieved.  In fact, I fully expect all her milestones to be reached...someday.  I expect her to be able to speak and for people to be able to understand her. I expect her to learn her alphabet and numbers. I expect her to learn to read and do math. I expect her to learn to ride a bike and tie her shoes. I expect her to learn how to swim.  I expect her to learn how to ski and join us on our yearly ski trip.  I expect her to graduate high school and get a job.   And...I expect her to learn acceptable behavior (because one day, cute will wear off).

I don't know when these things will happen. Anna seems to have her own timeline in that cute little head or hers. I am reminded of this verse from Acts 1:7 "It is not for you to know the times or dates the Father has set by his own authority." Well, Anna isn't God, but I am pretty sure they are in cahoots in regards to timing.  =)

I don't know when they will happen, but I expect them to happen, and know they can happen, if we keep working on them and not giving up because we think she can't do it.

Will it be easy?  Not at all! But that is why we have a fantastic team to help us.  Not only has God blessed us with the most supportive family and friends and church family, but Anna also has such a loving teacher and staff that are working hard to help her reach her full potential.   And, do they ever have to work hard!!

But as much trouble as she gives them, you can tell that she loves them even more!






Delayed does not mean canceled.  It just means the scenic route. It might get a little bumpy, and there will definitely be some crazy turns. The road might be a little longer, but the views will be breathtaking. So, sit back and enjoy the ride! =)

Tuesday, October 9, 2012

Overheard

The other day, Charlie had a friend over.  The conversation I overheard went like this...

Friend:  Do you like your sisters?  

Charlie: Yeah, I guess.

Friend:  I like Anna.  She is so cute.

Charlie:  Yeah - she is really cute and snuggly.

Friend:  She is so cute I can hardly stand it!




Overheard one day at the park....

Little girl:  How old is your sister?

Paige: She is four.

Little girl:  She is four and still talks like a baby?

Paige:  Well, Anna has Down syndrome and she won't always talk like that.  Don't make fun of my sister.

Little girl: I am sorry.  What is Down syndrome?





I think a common concern that parents have when they first learn about their child having Down syndrome (or any disability, for that matter), is how will this affect our other kids?  I know it was a concern of ours.  We worried -- will the care that Anna requires take away from Charlie and Paige?  Will Charlie and Paige be made fun of for having a sister with special needs?  What happens when we are no longer here - Who will care for Anna?

It didn't take long for our fears to be calmed.  Charlie and Paige love Anna like there is no tomorrow.  They fight over who gets to sit next to her and who gets to get her up from her nap, etc.  They defend her and they want to cheer for her and support her.  She is a part of our family, and we would not be the same without her.


Having Anna as a part of our family doesn't mean we stopped living.  Check out some of the past posts of this blog if you need proof.  We still do all the fun things that other families do. Plus we get to do fun things like the Ds Christmas party, Special Olympics and the Buddy Walk.  Yes, there have been times when we haven't gone somewhere or didn't do something because we didn't want to take Anna.  But we didn't want to take Anna for the same reasons you wouldn't want to take a baby or a small child somewhere - not because she has Down syndrome.


Anna's presence in our family has not only changed us for the better, but it is changing and affecting people we meet everywhere.  And, two of her biggest voices are her brother and sister.



Monday, October 8, 2012

The Happy Truth

Myth: People with Down syndrome are always happy.

Reality:  NOT TRUE!!!

Of all the myths about people with Down syndrome, oh, how I wish this one was true!  Ok, not really, but it would make life a lot easier at times.


upset because I wouldn't let her roam the beach on her own

upset because I wouldn't let her watch her favorite show
People with Ds have feelings just like everyone else. Anna gets angry.  She gets sad.  She gets frustrated.  She throws fits when she doesn't get her way.  She misses people when they leave.  She is stubborn (Oh, boy! Is she ever stubborn!!). She gets tired and cranky. She gets hurt - physically and emotionally.

But, when she is happy, she radiates love.  She is accepting of everyone and has a hug to offer most everyone.  When she is happy, she is boisterous and funny.  When she is happy, she is singing and dancing.  And when she is happy, she shows it by smiling with her whole face.






Anna is also quick to forgive, and very concerned about others when they are upset or crying.  She is friendly and ready to high five everyone who crosses her path.  And, she always seems to seek out those who are a little "different" and manages to give them a little extra-special attention.  Yes, when Anna is happy, she is the angel that everyone imagines that she is all the time.

Raising a child with Down syndrome is not always easy, but a being a parent in general is not easy.  The challenges are just different.  It can be very stressful at times when Anna does not cooperate, but I have no doubt that if Anna did not have Ds, then we would be dealing with a different set of problems.  At school right now, Anna is having some trouble because she is so stubborn. When she wants to do something, you can see how smart and capable she is.  But, when something is not on her agenda -- look out! She drops to the ground, screams, hits...an all-out temper tantrum.  (She does this at home as well, but the impact is a little different because she is not disrupting an entire classroom.)

So no, people with Ds are NOT happy all the time, but that is okay, because that means they are more alike than different.

And, as we are struggling with helping Anna learn appropriate behavior, we never lose sight of how special she is.  She won't let us.  She may be a little devil at times, but all you have to do is get one of her hugs to feel real love -- A love that can only come from someone with a pure heart and who has been (extra) blessed by God. A hug that says, "I love you for you, good and bad, and I wouldn't change a thing."  I can only hope my hugs say the same thing to her.

Saturday, October 6, 2012

What Is She Doing With Her Tongue?

This is probably the most common question we get about Anna from kids.  They notice her tongue sticking out and wonder what is up?

photo by Carissa Marks for Inspiration Through Art




The protruding tongue goes back to a couple of things...low muscle tone, and a small head.  It is not that her tongue is too big, rather her oral cavity is too small.  And, unless she is engaging her mouth muscles, the tongue hangs out.

This is something that will improve as her oral motor control improves.  Her tongue is retracted a lot more these days as she has started speaking more, and as she has become more active and upright.  In fact, I had to search pretty hard for a recent picture where her tongue was just out, and her mouth was not open and smiling.

Deep in thought


Her kisses, on the other hand, are still big, wet, sloppy tongue kisses. =)