Wordless Wednesday

From Our Editor in Chief – Life Goes On

Editor in Chief (EIC) - These next questions make me uncomfortable, but I’m going to ask them anyway. These questions are probably influenced by that 90s drama Life Goes On, which as you recall Corky, the son with Down syndrome, had a girlfriend. Answer if you’d like.

Chris - I also remember this TV show. It was one of my family’s favorites. There were times in Jr. High or high school, however, when I was with my friends, that I would make fun of the show. I have to admit, I feel a lot of shame about that. Any person with Down syndrome or a learning disability that I knew, I treated with respect. But how hypocritical I must have been when a friend did something silly, or dumb, or stupid for me to reference Corky or the theme song of Life Goes On. I can’t go back and change it, but I feel very shameful for anytime I made light of someone’s intellectual disabilities. Every day for the rest of my life, I will try to make that up to Alea as I feel like that let her down.

EIC - Don’t be too hard on yourself here, Chris. For people of our generation, Corky is a name we’re all familiar with, and we’re all not proud of using it the way we probably did. It’s like my good friend Oprah says, “When you know better, you do better.” She’s quoting Maya Angelou when she says that, so out of the mouth of two or more influential women, it must be true.

Looking ahead, what type of life will Alea likely have in her adult years? Will she be able to live on her own? You posted a YouTube video about a girl with Down syndrome who was planning for college. Do you see college as a possibility? Is that common?

Chris - Cindy, I will be honest, looking too far ahead scares me. There is so much unknown that I can get caught up worrying about. Right now we are dealing with some effects of pulmonary hypertension. Alea has severe sleep apnea. I know several parents who are dealing with so many more health issues than we are. One is dealing with leukemia; one is dealing with seizures; and another is dealing with diabetes and celiac disease, as well as Down syndrome. I could just make myself sick trying to worry about it all.

I have dealt with some pretty significant anxiety in the past. I still do on a daily basis. It is something I have to fight constantly, so I have to be mindful of the things I can control and the things that I can’t. Our plan for Alea is for her to be the best she can be. We see it as our responsibility to see to it that she reaches her full potential, just as it is with our other girls.

Jodi works tirelessly doing early intervention with Alea trying to get her skills to develop as quickly as possible. I do know that she is a very smart little girl and works hard to learn. I can also tell that she has social intelligence that is on par with where our other girls have been at the same age.

Long story short, yes, college is a possibility and it happens more than I ever realized. Our role is to help her get there if that is something she chooses to do.

I will admit, I catch myself wondering how we are doing with keeping her where she should be. There was a neighbor girl in our church that was born 10 minutes after Alea. When I see her in church it is hard for me not to look at her and see what she is doing: Is her head strong; can she grab toys; etc.? I have almost caught myself wondering how Alea is progressing in her development when compared to her little church friend. When I catch myself doing it, I try to stop and remind myself that Alea is Alea. She will be her best, and her best already is a blessing to me.

EIC - Will Alea be able to get married? Are there laws preventing those unions?

Chris - I am not aware of any laws preventing this. There is a movie out about a couple named Monica and David. It is about a Down syndrome couple that got married. I started watching part of it a couple of weeks after Alea was born and it was hard. There were challenges the family faced (it had nothing to do with the marriage) that I wasn’t ready to think about at that time. I need to go back and watch it now.

EIC - Are kids a possibility for Alea? (I think they are, because I saw a Law and Order episode once where a girl with Down syndrome was impregnated.)

Chris - I do not have information on this.

EIC - What is the common life span of someone with Down syndrome?

Chris - I have heard it is around 60-65 years. Part of me thinks I should do some research, while part of me doesn’t need to.

EIC - What are your hopes for Alea’s future?

Chris - I hope that Alea can do what she came to earth to do. Help those that need her. The other day I got home from work after a long week of work. I was not in a good mood. She would not take her eyes off of me. She followed me with these caring eyes wherever I was in the room. Her social awareness is such that if you look back at her she won’t keep looking in your eyes as there is that perceived un-comfortableness. We all feel it. That was not the case this night. She looked at me constantly with such loving eyes. I finally picked her up and she laid her head on my shoulder and gave me a hug. She has a gift to tell if someone needs help. I know she felt that I needed to feel of her spirit, and she made it happen.

We will parent her just like most would parent any child. We will do anything and everything in our power to give her the confidence, practice, and support to be the best that she can be. We love her and are glad that she is a part of our eternal family.

Next month: School questions.

Hero Film Friday – Chad Robinson

 

I have known the Robinson family most of my life. You will not find a family with more charity, love, or faith. I have always admired their ability to handle adversity with smiles on their faces.  They are heroes in my mind.

Jed, the oldest son is a partner with me in my video business.

Chad, the youngest son. Here is his story as written by Jed and a video of his artwork.

Chad Robinson was born in a small town in south central Idaho. At the age of two he nearly drowned in an irrigation ditch at his home. Since the accident in 1984, he has been confined to a wheelchair, has limited fine motor skills and does not have the ability to speak.

Despite the ongoing challenges related to his accident, Chad has been able to move forward in regaining lost skills and gaining an education. Although he does not have verbal abilities, he uses other methods to communicate his wishes and opinions.  Chad graduated from high school in 2000 and has taken a couple of classes at the local junior college.

In June 2009, Chad began receiving professional art instruction. He learned about abstract art like that of famed artist Jackson Pollock and others. Since that time he has continued learning new techniques and composition skills. His teacher has developed a system whereby Chad chooses the medium, colors, tool or brush, type of papers or canvas and length of time spent working with a certain color or tool. He is very specific in letting his instructor know when he has completed a painting. Chad has created at least 40 paintings as of April 2010.

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Today's Fact About Down Syndrome

Myth: People with Down syndrome are severely “retarded.”

Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Hero Film Friday - Bill

The world needs more men like this.  A true example for all of us.

Catching Up

I need to apologize for my lack of updates over the last little while.  I don’t know what Christmas did to me, but I have yet to catch up.  Both work an school mixed in with family have left me little time to blog.  I intend to do better.

A First Christmas

Our Angel’s first Christmas was  a special one.  I had forgotten the spirit a little baby brings into the home.  It seems to be even more present during Christmas.  EC and Keena were so cute with their sister wanting to show her all the sights, sounds, and traditions of Christmas.  Santa decided to get some DVDs for her to learn sign language.  These DVDs, called Signing Time have been a family favorite.  Keena and EC watch them regularly as we try to help our Little Angel learn to communicate.

Angel’s First Road Trip

We were able to go and visit family in Idaho over the New Year.  It was Little Angel’s first road trip.  She loved it, especially all of the attention.  With her oxygen machine, we had to go a little white trashish and put some luggage on the roof of our van.  Ironically I forgot a piece to the oxygen machine so we had to track down an Idaho branch of Praxair.  They ended up just delivering oxygen tanks to get us through the trip, so we went all cousin Eddie for nothing.

My dad taught the kids a game he used to play with us as kids.  It is called “Fox and Geese”.  They all had fun.  It was a wonderful chance for us to go and visit family.a

Game rules:  Fox and Geese - This game is played after a snowfall. First the snow is tramped down in paths to make a big wheel with spokes and a hub in the center. One player is the Fox and the rest are the Geese. The Fox tries to catch a Goose (who then becomes the next Fox). Players must stay inside the paths. If a Goose steps off the path, that Goose is caught. The only safe place for a Goose is in the center (hub). But only one Goose is allowed to be in the center.

A Christmas Present for Austin

While we were in Idaho we ordered a Christmas present for Austin.  We just got the proofs.  There may be some minor changes, but we are anxious for the ground to thaw so it can be placed.

Updates & Milestones

• Little Angel’s pulmonary hypertension seems to be better.  We have an appointment with the pulmonologist on Friday for an update.
• She does have severe sleep apnea that requires oxygen at night.
• She has acid reflux that which complicates the apnea and the pulmonary hypertension.
• She has grown so much.
• She can use both hands to hold things.
• She reaches and grabs rattles and toys very well.
• Just recently she has learned to reach and grab with both hands for something right in front of her.
• She loves her play piano exersaucer.
• She can sit in her bumbo.
• She has started eating rice cereal and baby food.
• She has started laughing.
• She still sleeps through the night.
• She has become pretty social and looks when you call her name and smiles a lot.
• She easily rolls over on her own.
• Little Angel communicates very well.  Keena was paying the piano about a month ago and when she would stop, Little Angel would start whimpering until she started playing again.  She did the same thing watching signing time with me this morning.

Christmas 2010

"As we seek Christ, as we find Him, as we follow Him, we shall have the Christmas spirit, not for one fleeting day each year, but as a companion always. We shall learn to forget ourselves. We shall turn our thoughts to the greater benefit of others" (Thomas S. Monson, "In Search of the Christmas Spirit," Ensign, Dec 1987, 3).

Christmas 2010 VIEW SLIDE SHOW