Happy Birthday Melody!! The big 21!

Yesterday was my cousin Melody’s birthday.  She turned 21.  She is a great example to my family and especially my daughters.  I hope you had a special day Melody. 

Here are some  pictures of Melody:

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Here is a write up done by her parents that was printed in the new parents guide that the Treasure Valley Down Syndrome Association publishes.

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A Call to Action - Write your state legislature TODAY

I need to ask a favor of any of you that read this blog.  The economy may soon take its toll on those children who currently receive help from Utah's Baby Watch Early Intervention Program.  The program in Utah County is called Kids on the Move.  We would seriously be lost with out them.  The teach us how to help Alea develop, both cognitively and physically.  Without them, we would seriously be guessing on how to help her.  (I think I used seriously twice...get the point? )  ;)


The proposed budget cuts could take away these programs.  Below is a letter from the our local Director of Early Intervention.  Please take a minute to write your state lawmakers, for Alea, and all the other angel's who benefit.  Encourage your friends to write as well.



For those in Utah, you can find who your state representatives are here: http://le.utah.gov/Documents/find.htm

Now is the time for action!

 

Publish Post

Dear Parent,

The end of this legislative session is quickly approaching.  Final budget decisions are being made that will impact the Baby Watch Early Intervention program, including our program at Kids on the Move.  NOW is the time for action! The ultimate budget decisions rest with the Executive Appropriations Committee. Legislators have heard from families like you in the past few weeks, but it’s critical that the Executive Appropriations Committee members hear from you now! 

The proposed cuts could force Baby Watch to change the eligibility requirements for infants and children, birth to 3, who are served in Utah. Prior to 2003, we were able to serve children who were “mildly” delayed, but had to stop serving these children due to budget constraints. If proposed cuts are made during this session, Early Intervention Programs, like Kids on the Move, may be unable to serve children who have a “moderate” developmental delay. 

Surprisingly, we’ve found that many legislators are not familiar with early intervention and don’t understand the critical services we provide. We urge parents to contact members of the Executive Appropriations committee and advocate for the services your child and family have received through Early Intervention. Be sure to reference Baby Watch Early Intervention Program since this is how the program is listed on the state budget. I’ve attached a list of members of the Executive Appropriations Committee for your convenience. It’s especially important to contact, Representative John Dougall since his district includes the Alpine School District area that we serve. 

John Dougall

H: (801) 492-1365  M: (801) 362-7155

jdougall@utah.gov

Please tell your story of how early intervention services helped you and your child. Legislators are especially concerned about the economic impact of programs.  Research has shown Early Intervention can actually decrease the need for costly services as a child grows into adulthood.  Let legislators know how early intervention services have been an investment in your child’s future.    

Any efforts you make to reach out to your legislators at this final phase of the legislative session are appreciated.  Thank you in advance for your time. Feel free to contact me with any questions.

Sincerely, 

Kelsey Lewis, MSW

Early Intervention Program Director

Kids On The Move

475 West 260 North

Orem, UT 84057

w 801.221.9930 x110

klewis@kotm.org

Hero Film Friday–John C. McGinley

Wordless Wednesday

Todays Fact About Down syndrome

Myth: Children with Down syndrome must be placed in separate special education programs.

Fact: Most children with Down syndrome in the United States are “mainstreamed” into regular schools. They attend regular classes for some subjects and attend special classes for other subjects. Each school system is required to provide the best learning environment possible for all special needs children.

Hero Film Friday–Bryann Burgess

From Our Editor in Chief – God Loves You

Many years ago, I had a sister who was going through an incredibly difficult time in her life. My heart broke for her as I watched her struggle with her faith and her concept of herself. This sister always had a huge heart, and she knew that in order to bring herself out of the depression she was in, she needed to give service to others who had it worse than her.

She joined a mentorship program and was responsible for a teenage boy with severe autism. Anyone who knows someone with autism knows that they struggle greatly with non-tangible things such as religion or faith. The boy’s mother was a drug addict, but her parents, the boy’s grandparents, were faithful, church-going people. They would take the boy with them to church, but he didn’t get much reinforcement from his mother.
My sister retold me an incident she had with the boy where he asked her, “Does God love me?” My sister was at that time struggling greatly with that question herself. She didn’t exactly know how to answer him. She gave him a vague, “Yes, he does.” But she didn’t feel it was true, and it scared her.

When she came to me with this problem, I too was caught off guard. Well, yes, He loves you, but then I didn’t know how to put it so she understood. And I’ve thought about that conversation many, many times for a way I could answer someone if they came to me with that question again. A “yes He does” doesn’t seem sufficient. And even more, how do you explain that to a child of God who struggles with learning disabilities, or someone who, unknowing to most people, is living life as a spiritual paraplegic?

Recently I’ve returned to work full time, and to help me stay awake, I sometimes listen to a radio program produced by The Church of Jesus Christ of Latter-day Saints. The site has different podcasts that would be beneficial for anyone of any faith who enjoy listening to uplifting, positive people. The podcast I was listening to on one particular morning was of a woman describing the struggles she endured in raising three children with severe handicaps.

The woman’s name is Joyce Erickson, and you can read more of her inspiring stories on her Web site, www.our-beehive.com.

This one particular story she told was about her son, Mark. As Chris can appreciate, Mark loved all things BYU football. I didn’t hear the particulars of his condition, but I could tell that Mark couldn’t walk, had limited speech, and he had a learning handicap. (Joyce said her son likes to refer to himself as handicapped, so that’s why I use the term “handicap.”)

He was getting off the bus one day when he was in high school, and Joyce could tell he was sad, which wasn’t typical for Mark. She could tell he was on the verge of tears, so she hurriedly pushed his wheelchair inside the house and let him cry for a few minutes.

She finally asked him, “Did something bad happen to you at school today?”

Mark answered, “Mom, the boys at school are so lucky. They can run, and they can play football, and they can run fast and run races.”

From here is where a stroke of genius or a beautiful intervention of the Spirit of God hit Joyce, and what really struck at my heart. She repeated the following conversation:
“The boys at school are lucky, Mark, but did you know what? Everyone in some way is lucky. Did you know that?”

And he said, “No.”

And I said, “Well, they are.” And without even thinking about it before hand, I held up my left hand and I pointed to each finger, and I said, “Mark, your friends are lucky,” as I pointed to each finger, “because they can run, they can play football, they can ride bikes, play computer games, and write…”

“And draw,” Mark said.

“Yeah, and draw,” I said. “But you know what, Mark? You’re lucky, too.” And I held up my right hand, and I said as I pointed to each finger, “You’re lucky because you got to go into the BYU locker room and meet all the BYU football players, and you got to meet the BYU basketball players. And you got to sing with the Tabernacle Choir. And you got to meet Brother Ottely, who is the leader of the Tabernacle Choir.”

And then Mark said, “And go on the U.S.S. Nimitz.”

And I said, “Yeah, and go on the U.S.S. Nimitz. Do you know how else you’re lucky, Mark?”

And he said, “No.”

And I said, “You’re lucky because everyone likes you. I don’t know anyone who doesn’t like you. Do you know one of your friends at school said to me once, ‘Mark, is so lucky. I wish I had as many friends as Mark has.’ And when you were running for governor of the fourth grade, a girl who was running against you said, ‘It really isn’t fair. Everybody knows Mark and everybody likes him.’”

I said to Mark, “Did you know that?”

And he said, “No.” But then his face started to brighten up a little bit.

And I said, “Do you know how else you’re lucky, Mark? You’re lucky because Satan can’t tempt you. Satan can tempt your friends to lie and to cheat and to steal and to disobey their parents and to be mean to other people, but he can’t tempt you to do any of those things.”

“Everyone is just lucky in different ways. Your friends are lucky in these ways,” as I held up my left hand.

“And you’re lucky in these ways,” as I held up my right hand.

“Mark, if you had a choice, would you be lucky like this,” as I held up my left hand, “like your friends are? Or would you be lucky like this,” and I held up my right hand, “like you are?”

And without even hesitating he said, looking at my right hand, “I want to be lucky like that.”

Isn’t that story beautiful? That story makes me want to be a better parent.

So to answer my sister’s question of the boy with autism who wondered, “Does God love me?” I would emphatically say, “Yes, He does!” And I would list all the ways God loves that boy, and I’d do the same for my sister. And I would be specific. I wouldn’t give rote answers geared toward all individuals, but specific examples of why that boy is lucky. Hopefully it would help him to see God’s hand in his life. Because He’s there—in all our lives.

Cindy Fisher
Editor in Chief
awalkwithourangel.blogspot.com

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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