Monday, October 12, 2015

Down Syndrome Awareness - Day 12 Service Dogs

My husband grew up with dogs.  I did not.

My children love dogs.  I"m not a huge fan.

I love my children, especially Aubrey.  I'm loosing the battle on a dog.

I'm softening to the idea of a service dog, but not any time soon:)

This video came across my feed today and Aubrey watched it at least 6 times and kept saying "Aubrey".  In any event, service dogs are wonderful and when Aubrey's sisters all move out, she may need one to keep her company.  Until then, my kids can keep begging, I guess!

Down Syndrome Awareness - Day 11 Signing Sunday

In case you didn't know, Aubrey (and our family) is learning Signed Exact English.  It is different from American Sign Language in a few ways.  SEE is going to help her better learn to read and write because it follows the written language that we all use.  ASL uses less signs to mean the same thing.  Here is a video that explains it better than me and uses examples of sentances showing the difference.

Happy Signing Sunday!

Down Syndrome Awareness - Day 10 Communication

Communication can be tough for kids with Down syndrome and many turn to Sign Language to help bridge the gap between needs to communicate and ability to communicate.  We were no different in the beginning and fell in love with Signing Time videos.

Once we learned that Aubrey was hearing impaired, we had to move into high gear and learn more since that was going to  be her primary means of communication.  We took classes at the elementary school and go dictionaries.  It was tough.  But we had so much help.

I'm impressed with how much she knows sometimes, and how she corrects us.  I love that we can communicate without even talking and sometimes it is fun to tell "secrets" with my kids that no one else can hear:)

Her language has improved tremendously and we use both verbal and signing now, but still very much need the signs to get all her wants and needs across sometimes.  The challanging part now, is that she is learning faster than we are!  I love that her teachers are always sending home sheets of words (so we don't have to look them up) and it helps us learn some of the new words she is getting at school.

For your learning pleasure this week, her spelling list.  We knew all of these, but it is always a good review for signs we don't use often.

Down Syndrome Awareness - Day 9 Changing the Face of Beauty

We have big dreams for our Aubrey!  We expect her to be....unique and exciting and beautiful and smart and independent and wonderfully herself.  We expect that of all our kids:)

Defining beauty in only one way, is limiting to so many in the world.  We are blessed that she is a part of a school where there are lots of unique kids and she is no different than anyone else.  Her disabilities don't make her stand out.  All the kids at that school are unique and beautiful and special.

Kelle Hampton is a blogger I have followed for years.  She blogs about life beauty....and her family....and her daughter who has Down syndrome.  Everyday life is just everyday life.  She had a blog before her daughter was born and not much has changed.  She blogs life.  But she also blogs about the change she wants to see in the world for her daughter.  She has connected with others and raised money to make a difference for her daughter and others with Down syndrome.

This post about changing beauty is great:

Thursday, October 8, 2015

Down Syndrome Awareness- Day 8 Tired

Keeping Aubrey healthy has been tough. For 2,586 days (7 years and 1 month), that has been our job. Kids with Ds often have weaker immune systems. 

Sometimes we struggle with her health and sometimes we do not. Right now we are battling. Which means we have TWO new pieces of equipment at our house. 

The pulse ox monitors her oxygen levels, which is ultimately how we know she is getting sick. We monitor her at night. Anything above 90 (red) is good. Anything lower and she gets oxygen, which we also have right now.  It's been some sleepless nights monitoring her or fixing the beeps when it doesn't read or she pulls it off. But we like knowing how she's feeling since she can't tell us. 
We also have a pulmonary vest. She often uses this when in the hospital and they finally decided we should have one at home. She puts it on. It puffs up with air and we connect hoses that "shakes" her.  10 minutes a session.   Supposed to shake the snot out of her or get her coughing.   Either way, we've seen some progress since getting it. We hope it is the simple answer to keeping her lungs healthy and clear. 

Now this tired mama is heading to bed. Restful sleep to all!

Wednesday, October 7, 2015

Tuesday, October 6, 2015

Down Syndrome Awareness - Day 6 - Anything is Possible #LONGSHOT

I feel so blessed that our world has changed in regards to people with any disability.  People with Down syndrome are proving every day, all around the world, that they are not only capable of doing what everyone else is doing, but they can do it great!

I came across an article entitled "8 People with Down Syndrome Who Are Making History".  The original article is here:
(some of the video links don't work, but you can google them)

There is a woman who graduated college with honors.  There is a model and an actor and even a politician.  All of them have Down syndrome and have achieved more than was thought possible.

The last story really struck me, because kids can be so cruel.  I think one of the things I have always worried about is bullying and acceptance for my daughter.  Owen's path wasn't without bullying and mean kids, but in the end, the way his team and the other kids at school rallied around him, was amazing!

We should all have that kind of love and support, disability or not.  Go out there tomorrow and show love and kindness and support to someone!

Monday, October 5, 2015

Down Syndrome Awareness-Day 5 Some Things Come Easy

Some things take time and are difficult and hard.

Some things come really easy for Aubrey and music just happens to be one of them!  She fits in nicely with her friends and sisters.

I'm so glad that her school still sees the value in offering music to it's students.  She also participates in music and choir at church.

Girl loves to sing and listen to music and dance, but also recently started to love playing music and does so very beautifully and gently with cymbals and the piano and anything else she can get ahold of.


Sunday, October 4, 2015

Down Syndrome Awareness-Day 4 Signing Sunday

Every once in awhile someone asks me what support groups we are participate in.  The answer is NONE.  I'm sure it would be wonderful to connect with other families regularly who have children with like children, we just don't have the time, or feel the need.  We get all the support we need from our family and friends who love us and our girl regardless of her differences.  

Along the way we have gravitated towards those people that Aubrey enjoys the most and that has been the Deaf Community.  It is a big part of her life, especially since it has required us to learn sign language and for her to attend a special classroom and school.
I thought that it would be fun to share a little more about her hearing impairment this year and teach you and share more on sign language, even though her language is getting so much better lately.

Listening to music is great and watching movies is fun, but I know she misses things sometimes.  It was so fun to be able to share this video with her of a woman signing "Let It Go" from Frozen.  Sign language can be so beautiful.  Enjoy!

Down Syndrome Awareness-Day 3 Differences

People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions.  Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

But that means that we have a lot of "well" appointments that we go to each week.  It can be tough, but because it is necessary for her well being....we just figure it out.

She's complex you could say.  She hits many of those points for a person with Down syndrome.  But she has an infectious laugh and smile and she rolls with all the punches better than we do.

We especially want to thank those who help us along the way.  To those who have first and foremost prayed for our girl, watched our other kids, run extra carpool for us, provided meals and visited us.  You are part of our village raising this girl and we couldn't do it without you.  Thank you!  You are part of what makes her life a success, no matter how small that help to us feels.  It is all important.

Friday, October 2, 2015

Down Syndrome Awareness-Day 2 Independence

Aubrey is small. And because she is small, there are things and milestones she hasn't or can't reach....until we find a way. 

She couldn't ride a bike....because we couldn't find one small enough. Once we did, she was off and running. 

Her whole life will always be like that. Finding ways to modify the world she lives in so she can be successful. 

Independence comes at a delay, but it always comes...we just have to help find the way to it. Sometimes it just means a stool and sometimes it means we have to search out help and answers. When you have a child with special needs, you are always on duty, working to help them be successful. 

Thursday, October 1, 2015

Down Syndrome Awareness-Day1 More Alike Than Different

We are a busy crew around here and I find it easier to do a quick facebook update, than update the blog most of the time.  But when October rolls around, my heart wants to write longer posts about my Aubrey.  

It is Down syndrome awareness month again and it is a chance for me to share our special girl with the world.  To be a window into her life and that extra chromosome that gets so much attention sometimes.

The truth is, she's just Aubrey to us.  And the Down syndrome is just one small part of who she is.  Is she different?  YES.  Is she still our girl?  YES.  And along with her genetic make up coming from us, she also shares our passions and talents and loves.

She comes from a long line of artists.  If you didn't know, Aubrey's dad is an artist and many in his line are artistically talented.  Aubrey's mom....not so much.  I'm the teacher that still uses stick figures.  All of our girls love art and drawing and painting and the such....and Aubrey is no different.

Her favorite is painting with water.  On the pool walls.  On the deck.  On the chalkboard.  But she loves markers and crayons and drawing too.  We can actually tell what she is drawing and her people have come a long way.  

Someone posted this tv show clip and I thought is was nice.  And while I'm not hoping that Aubrey is working on her skills to one day become a Tattoo Artist, I do hope that she always loves the arts and that she always loves what she does...same as I want for all my girls.