Sunday, February 27, 2011

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:

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.

Thursday, February 24, 2011

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!

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

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

Tuesday, February 15, 2011

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.

Thursday, February 10, 2011

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