After a year of taking time off in attempts to bring some order to the chaos and insanity in our home, we realized that our efforts were futile. We've begun to face the fact that this roller coaster called our life will be a long-term thing, so we're trying to pick up the pieces once again.
This past year we have faced two hospitalizations of our son, a marital separation which didn't solve anything so we reunited, legal issues, school battles, financial difficulties and much, much more. In other words, we are stumbling down Battered Life Boulevard like so many others.
We hope we can bring you some encouragement as we walk along beside you. It is so difficult to continue to keep the pace in this never ending marathon. We hope to be a pit stop along the route where you can regain some strength to your spirit and refresh your soul as you care for your loved ones affected by disabilities.
Please do correspond with us to voice concerns, questions and more at ode@comcast.net or jannaode@yahoo.com. We continually pray for each person that is reading this, and those that haven't yet. We hope to hear from you soon!
2/06/2010
12/24/2008
Instability
Due to my son's instability and a very tough 2008, we haven't been able to support this ministry in the way we would've wanted. It is temporarily on hold (emphasis on temporary).
We've been praying that God would direct this ministry, using us only as He sees fit in order to meet the needs of the community of those struggling with similar issues. Though it has been so difficult to accept this past year of inactivity, we are trying to believe that God has a purpose for it all, and somehow "all things will work for good.....according to His purpose" (Romans 8:28).
Know that we have been praying for each of you individually. We care deeply about your situations, your life, your emotions, your well-being, and much more. Please pray for us and this ministry of outreach to those unable to attend church due to their family's unique needs.
I have been keeping a blog for my son's counselor and doctors. It may encourage you to see a raw look at the life of a family dealing with mental illness. If you are interested in viewing it and would like to be added to the approval list, contact me at ode@comcast.net.
Hope to see you in 2009!
We've been praying that God would direct this ministry, using us only as He sees fit in order to meet the needs of the community of those struggling with similar issues. Though it has been so difficult to accept this past year of inactivity, we are trying to believe that God has a purpose for it all, and somehow "all things will work for good.....according to His purpose" (Romans 8:28).
Know that we have been praying for each of you individually. We care deeply about your situations, your life, your emotions, your well-being, and much more. Please pray for us and this ministry of outreach to those unable to attend church due to their family's unique needs.
I have been keeping a blog for my son's counselor and doctors. It may encourage you to see a raw look at the life of a family dealing with mental illness. If you are interested in viewing it and would like to be added to the approval list, contact me at ode@comcast.net.
Hope to see you in 2009!
7/29/2008
A raw, inside look at the heart of a struggling family
(Journal entry dated 4/8/2008) "I'm still hurting, but still hanging in there. I'm trying to learn to relax a little today and put the endless to do list on hold for the day. We're going to try to go to church this evening instead of on Sunday morning. I don't know why I keep torturing myself with trying to go to church. The kids say they want to go, but the services are miserable for all of us. Maybe a Saturday service will be less stimulating for all of us and more relaxed. I'm growing to hate Sunday morning services because of the way I feel like we have to pretend to be something we're not. The kids are miserable and so am I. So, even though there's no Sunday School on Saturdays, I think we might all do better with a more relaxed service. We'll see. I am not going to fake a smile anymore. I smile naturally anyway, but I'm not going to put on a mask to go to church. I want to be real at church. If putting down my mask upsets others, so be it. I'm at church to worship God and to nurture my spirit, I'm not there to please others. If my reality makes others uncomfortable, they can just walk away. If my hyper-active, sensory needs, almost Asperger's son makes people uncomfortable, they don't have to sit by us. If my son freaks out in church because of a bad sensory day, people could offer to help instead of staring and clucking their tongues. If my daughter screams because her brother is freaking out, then others can either help or go away instead of staring at us like we're freaks. A special needs family deserves to be in church as much as the families who "have it together." I wish those families would just admit that their lives aren't perfect either. We're just loud about our imperfections! I used to love church. Now I dread it. But I have to keep trying because my son (and daughter in a different way) needs to practice his coping skills and social skills. (And so do I). Church is a good place to try. Oh... I'm really lying to myself now... I just long for fellowship. I used to share fellowship until I grew a loud family. Now people run from us. Oh I'm really whining today... I guess I'm getting paid back for every time I used to ask "Why can't those parents control their kids?" There is no such thing as controlling your kids or anyone else. At best we can influence and teach. My goal is to help my kids learn to control themselves. Most days, I don't know what I'm doing, so I just do the best that I can. I'm not going to pressure myself to get us to church this evening. We can have our quiet (or not) family service at home. I just long for the fellowship of other Christians. I think my kids do to. But at what cost. Soon they will learn that they are being ostracized by others. They will feel like they are wrong when they are not wrong. My son needs "active" worship... He is filled with God's spirit and when he's aware of it, he prays loudly and sings his heart out. I can't tell him not to express that. It's sad to admit that if I want my son's spirit to flourish, we need to skip church. My daughter would do okay in church. I think when she is a little older, we can find a way for her to be a part of the traditional church, but for now, she worships better at home too. If "worship" induces screaming and tantrums, then there's something wrong. I'd scream too if I thought it would do any good. Great, I made myself cry again. It's time to stop. I feel so alone. God, I know you are with me and our kids. Please love them through me and show me how I can find fellowship."
When I wrote the last line about asking God to help me find fellowship, I thought of you guys. I haven't met any of the other "unchurch" fellowship, but I'm thankful that I've met you. I'm sorry that I'm feeling sorry for myself, but that's where I'm at today. I suppose I'm grateful for the internet too. It does create one way of seeking fellowship in Christ. I'm glad you are there. I'm glad I feel comfortable enough to be this "real" with another family. I think I have that comfort because I'm pretty sure you've felt that way before. Thank you for reading, Blessings, Leslie
(send comments or questions to pastor_kurt@yahoo.com or ode@comcast.net)
When I wrote the last line about asking God to help me find fellowship, I thought of you guys. I haven't met any of the other "unchurch" fellowship, but I'm thankful that I've met you. I'm sorry that I'm feeling sorry for myself, but that's where I'm at today. I suppose I'm grateful for the internet too. It does create one way of seeking fellowship in Christ. I'm glad you are there. I'm glad I feel comfortable enough to be this "real" with another family. I think I have that comfort because I'm pretty sure you've felt that way before. Thank you for reading, Blessings, Leslie
(send comments or questions to pastor_kurt@yahoo.com or ode@comcast.net)
3/31/2008
Post Trib article re:Medicaid waiver
Families seek help for children with disabilities
March 17, 2008
By Janna Odenthal Post-Tribune correspondent
For families with special needs, hope often melts into years.
Those who applied in June 1998 for Medicaid waiver assistance for disabilities were put on a waiting list. This month, nearly 10 years later, some finally are being approved.
Opportunity Enterprises recently hosted a new support group, Family and Friends Together. This month featured the Medicaid waiver services program.
In a room nearly filled to capacity, fewer than 10 raised their hand to show that they were finally off the waiting list and approved to receive services.
South Haven resident Karla Pettett has been waiting seven years. She said she came to the meeting to hear answers to people's questions. Her 7-year-old daughter, Kara, needs a wheelchair and feeding tube.
"We all want to see the light at the end of the tunnel," Pettett said. "The system is so confusing that it's hard to even know what is available to you unless you hear it from a friend.
"Sometimes I don't even know the right questions to ask to get the answers that I need."
Pamela Barlow and Demetris Cole, service coordinators from the Bureau of Developmental Disabilities Services, explained how the waivers for autism, developmental disabilities and support services serve to assist a person to be as independent as possible.
They described how some of the features could include payment for medical services, therapy, respite care, crisis assistance and more.
They also attempted to explain the process of applying and gave advice on how to prepare.
Brenda Darrol, an Arc Network family advocate, attended the meeting. Her 14-year-old daughter, Angela, has been on the waiting list since 1998.
"We received notice just last week that Angela is being taken off the waiting list," Darrol said. "It is a relief, but, at the same time, I know there are thousands in Indiana still waiting. They deserve to get what they need, too."
Resources and references were offered by Barlow and Cole for those seeking further information regarding specific situations.
Kouts resident Paul Rhodea said he is trying to find a job in the community for his 17-year-old daughter, Rachel, mentally disabled since birth.
"It's bittersweet; we all have to adjust our expectations of our dreams for our kids," Rhodea said. "But when we accept the realities, then we can begin to educate ourselves and others."
Gary Mitchell, president of Opportunity Enterprises, encourages parents to do whatever it takes to get services for their sons and daughters.
"Go after it; go after it extremely hard," Mitchell said.
For more information
What: Family and Friends Together support group meeting
Where: Opportunity Enterprises, 2801 Evans Ave., Valparaiso
Contact: John Seibert, vice president, 464-9621 or www.oppent.org
March 17, 2008
By Janna Odenthal Post-Tribune correspondent
For families with special needs, hope often melts into years.
Those who applied in June 1998 for Medicaid waiver assistance for disabilities were put on a waiting list. This month, nearly 10 years later, some finally are being approved.
Opportunity Enterprises recently hosted a new support group, Family and Friends Together. This month featured the Medicaid waiver services program.
In a room nearly filled to capacity, fewer than 10 raised their hand to show that they were finally off the waiting list and approved to receive services.
South Haven resident Karla Pettett has been waiting seven years. She said she came to the meeting to hear answers to people's questions. Her 7-year-old daughter, Kara, needs a wheelchair and feeding tube.
"We all want to see the light at the end of the tunnel," Pettett said. "The system is so confusing that it's hard to even know what is available to you unless you hear it from a friend.
"Sometimes I don't even know the right questions to ask to get the answers that I need."
Pamela Barlow and Demetris Cole, service coordinators from the Bureau of Developmental Disabilities Services, explained how the waivers for autism, developmental disabilities and support services serve to assist a person to be as independent as possible.
They described how some of the features could include payment for medical services, therapy, respite care, crisis assistance and more.
They also attempted to explain the process of applying and gave advice on how to prepare.
Brenda Darrol, an Arc Network family advocate, attended the meeting. Her 14-year-old daughter, Angela, has been on the waiting list since 1998.
"We received notice just last week that Angela is being taken off the waiting list," Darrol said. "It is a relief, but, at the same time, I know there are thousands in Indiana still waiting. They deserve to get what they need, too."
Resources and references were offered by Barlow and Cole for those seeking further information regarding specific situations.
Kouts resident Paul Rhodea said he is trying to find a job in the community for his 17-year-old daughter, Rachel, mentally disabled since birth.
"It's bittersweet; we all have to adjust our expectations of our dreams for our kids," Rhodea said. "But when we accept the realities, then we can begin to educate ourselves and others."
Gary Mitchell, president of Opportunity Enterprises, encourages parents to do whatever it takes to get services for their sons and daughters.
"Go after it; go after it extremely hard," Mitchell said.
For more information
What: Family and Friends Together support group meeting
Where: Opportunity Enterprises, 2801 Evans Ave., Valparaiso
Contact: John Seibert, vice president, 464-9621 or www.oppent.org
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