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Friends of Special Children

Blog

Hello and welcome to our blog! 
 
At various times we will have different people hosting this blog to get a variety of opinions, input, experiences, etc.  We know that everyone's situation is not identical so we want to provide a broad base of posts.  Please feel free to add a post of your own.

Please note that people posting here are expressing their experiences, insight and opinions and that anything read here should not be substituted for or interpreted as medical advice.
 
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Posted by denise lavelle on 11/29/2008 at 1:45:21 AM EST.
Subject:  fightfornevadafamilies.org- EI budget cuts
This web site has information about which public representative you can write to about your concerns about budget cuts to Early Intervention services. It also has a sample letter for you to customize if you would like, or use as is.


Posted by Denise Lavelle on 11/29/2008 at 1:37:49 AM EST.
Subject:  info from SaveNEIS.org
The future of Early Intervention is in jeopardy. Write to your Legislators today and let them know that what is happening is not okay. Visit www.SaveNEIS.org. This site is dedicated to supporting the current program in Northern and Southern Nevada - Nevada Early Intervention Services. On the site you will find a Legislator Contact List and a Sample Letter. There will be a special Legislative Session on December 8th, 2008 to discuss the state budget. Recently there has been a moratorium on assigning families to begin receiving services by these programs. On October 13, 2008, NEIS administrators were instructed to refrain from assigning eligible children to a service coordinator/ teacher for ongoing services as a measure to save money; even though, there was and continues to be availability on service coordinator’s caseloads to serve children and their families. This moratorium has dramatically increased the waiting list. Nevada Early Intervention Services staff members have worked successfully since the merger in 2003 to remove the waiting list and serve eligible children at caseload capacity or more. Is this moratorium being imposed to make NEIS fail and to save money for the private agencies which have overspent their funding? Unless we speak up, families will continue to go without the help they need for their children. We need to combine our voices and ensure that privatization does not happen. Nevada is growing at an extremely rapid rate. We need increased funding, not less funding! To highlight the growth let's review some data: Number of referrals to early intervention services in Nevada: FY 2005 FY 2006 FY 2007 2,173 2,321 3,785 The number of referrals continue to increase every month. These families are being put on a waiting list. It is important to stay united in this fight! If you would like to receive future emails regarding these issues, email SaveNEIS@aol.com to sign up.


Posted by Denise Lavelle on 11/18/2008 at 2:00:01 AM EST.
Subject:  Friends Annual Holiday Party
It's time again for our annual Holiday Party, Dessert with Santa! 6:30 pm - 8 pm on December 11th at the Sparks Nazarene Church, 2200 El Rancho Dr, Sparks. There will be family activities, music, desserts, Santa and time to enjoy each others company. Save the date!


Posted by denise lavelle on 11/1/2008 at 7:40:26 PM EST.
Subject:  Family Resource Center Reno?Sparks
MISSION: To strengthen families by building a network of support and increased access to needed resources. VISION: All families are able to connect to resources and opportunities that promote healthy lives and strong communities. What is a Family Resource Center: A safe, friendly place to go for help. Community Based. Help for Families. Opportunities to Volunteer. More Information. What Help can I get at the Family Resource Center: Basic Needs: Food Clothing Financial Assistance Utilities Rent Prescriptions Respite Recreational Scholarships Academic Support: Before & after school clubs. Scholarships for summer school. Truancy prevention programs. Life Skills/friendship groups. Resources/Referrals: In addition to providing direct services, all of the Family Resource Centers offer resource and referral services. Individuals may call the Family Resource Center for individual needs or assistance in locating resources in the community. Staff is available to assist families in identifying needs and help them obtain the resources to meet those needs. Family Resource Center Hours/Phone: Rose McGuire Family Resource Center, North Valleys - 9:00 - 4:00 Monday - Friday. Phone: 677-5437. Central Reno - 9:00 - 4:00, Monday - Friday. Phone: 786-5809. Northeast Reno - 9:00 - 4:00 Tuesday - Friday, Closed Monday. Phone: 353-5563. Sparks - 9:00 - 4:00 Monday - Friday. Phone: 353-5733. Sun Valley - 9:00 - 4:00 - Monday - Friday. Phone: 674-4411.


Posted by denise lavelle on 11/1/2008 at 7:33:29 PM EST.
Subject:  Alexander Graham Bell Association
Name: Alexander Graham Bell Association Description: The Alexander Graham Bell Association for the Deaf and Hard of Hearing helps families, health care providers and education professionals understand childhood hearing loss and the importance of early diagnosis and intervention. Through advocacy, education, research and financial aid, AG Bell helps to ensure that every child and adult with hearing loss has the opportunity to listen, talk and thrive in mainstream society. With chapters located in the United States and a network of international affiliates, AG Bell supports its mission: Advocating Independence through Listening and Talking! Contact Information Phone: (702)553-2029 Fax: (702)434-7230 Website: http://www.agbellnv.com/


Posted by denise lavelle on 11/1/2008 at 7:29:45 PM EST.
Subject:  Children's Heart Foundation
Children's Heart Foundation Description: Helps to fund a summer camp for children with heart disease at no cost to families. Offers a support group; currently creating a family assistance fund to help defray medical costs for families for certain uncovered medical expenses. Contact Information Phone: (702) 373-3683 cell Fax: (702) 732-1385 Website: www.chfn.org Hours: M-F 8-5pm Location Address: 3006 S. Maryland Pkwy Suite #690, LV NV


Posted by Denise Lavelle on 11/1/2008 at 7:08:52 PM EST.
Subject:  Nevada PEP - A great Resource
PEP is Nevada's statewide Parent Training & Information center for families who have children with disabilities and the professionals who support them. Nevada PEP believes that the family is the fundamental unit in society. Children with disabilities, without regard to the nature and severity of the disability, have an inherent value, that all life has a purpose, that communities benefit from providing appropriate interventions and that citizens with disabilities make valuable contributions to society. Who Should Call? Parents of children with special needs, illness, and disabilities. Parents of children with mental health needs. Parents needing encouragement and support from other parents. Family members, friends, and persons with disabilities. Professionals in the medical, educational, and human service fields. Community leaders who make decisions about programs of support for children with disabilities and their families. What Services Does PEP Offer? (Services are provided at no cost) Information and Referral Statewide Lending Library Quarterly Newsletter Conflict Resolution Support Individual Assistance Parent Mentor and Advocates Training Workshops Volunteer Opportunities How Can PEP Help? By meeting our fundamental goals. Nevada PEP will be a long-term reliable statewide resource by providing information, support, and training programs to empower them to better advocate for the needs of their children. Nevada PEP will assist families to better understand the nature and needs of the disabling condition of their children. Nevada PEP will conduct community outreach and public awareness activities to heighten the awareness of available support, link families with other families in similar circumstances and enhance the family centered community based service deliver. How Do You Contact PEP? Statewide Toll-Free 800-216-5188 Central Office 2355 Redrock St. Suite 106 Las Vegas, Nevada 89146 Ph: 702-388-8899 Fax: 702-388-2966 Email: pepinfo@nvpep.org www.nvpep.org Satellite Office 4600 Kietzke Lane Suite O-269 Reno, Nevada 89502 Ph: 775-448-9950 Fax: 775-448-9603


Posted by Denise Lavelle on 10/20/2008 at 9:14:01 PM EST.
Subject:  Important Public Meeting
NOTICE OF PUBLIC MEETING STRATEGIC PLAN ACCOUNTABILITY COMMITTEE Video – Conferenced sites: Sierra Regional Center 605 So. 21st St. Sparks, NV 89431 775-688-1930 November 7, 2008 9:00 a.m. 1. Welcome and introductions, quorum call Jan Crandy, Chairman 2. Approval of the July 2008 meeting minutes Jan Crandy 3. Public Comment (No action may be taken on a matter raised under this item of the agenda until the matter itself has been specifically included on an agenda as an item upon which action will be taken.) 4. Presentation on the proposed restructuring of the state Early Intervention Services program Health Division staff 5. Discussion on the waiting list for Medicaid’s physical disability waiver Connie Anderson 6. Update on the federal regulations related to the rehabilitation option in Medicaid Connie Anderson (this is a continuation of the discussion from the last meeting) 7. *Discussion and possible action to restore objective #83 to the committee’s objectives list, and to edit the commentary on objective #84. Mary Bryant, Cheryl Dinnell 8.*Discussion of state Agency-Requested budgets for the 2010-11 biennium (to the extent that they are public) with possible action on recommendations to the Governor for amendments to those budgets. The Committee


Posted by Denise Lavelle on 10/13/2008 at 12:59:05 AM EST.
Subject:  Fundraiser to support Friends of Special Children
Magical Halloween Masquerade Fundraiser - October 29th 7pm Join us for an evening of food, fun and live Music. Psycics by Avalon's Gate will be on hand to give you a spooktacular forecast. Proceeds will benefit Friends of Special Children. Tickets are $25 for singles and $40 per couple Bring A Single Friend and get them in for only $10!! Call Reno Connections at 825-1022 for tickets and information


Posted by Denise Lavelle on 9/3/2008 at 1:48:32 AM EST.
Subject:  Hand and Voices starting a local group
Nevada Hands & Voices Saturday, November 8th 11:00 AM Sky Tavern Lodge 21330 Mt. Rose Hwy. Reno, NV Hands & Voices is dedicated in providing unbiased support to families and their children who are deaf and hard of hearing, as well as the professionals who serve them. Come check us out and meet other families from Northern Nevada. We will have food, fun, and local resources for you to check out. You can find out more information about Hands & Voices at www.handsandvoices.org. Look for more information coming in the mail soon.


Posted by Dan on 8/20/2008 at 1:18:54 PM EST.
Subject:  Project ASSIST is Nevada's Central Directory
Project ASSIST is a Nevada central resource directory for anyone seeking information about organizations, programs or agencies that provide services and supports for children and young adults up to 21 years with disabilities, and their families. Information is available on: • parent support groups, • respite care • screening, diagnosis and assessment, • early intervention programs for infants and toddlers, • education, health, and social service agencies, • vocational training, • therapies, • counseling or psychological services, • advocacy organizations, • life planning, financial or legal assistance, • as well as many other services. During work days phone calls are answered promptly when staff is available. There is twenty-four hour voice mail as well and calls are returned generally within two working days. A search of this computerized database, tailored to the unique needs of the caller, yields a printout describing each selected resource and a packet of information is then mailed to the client on the same day. There is no cost to the individual. Project ASSIST 1-800-522-0066


Posted by Dan on 8/20/2008 at 1:14:39 PM EST.
Subject:  The Lesson of Dreaming
This is an excerpt from DOWN SYNDROME: A PROMISING FUTURE, TOGETHER. by Terry J. Hassold and David Patterson. *the words DOWN SYNDROME have been replaced with DISABLITY, read on. The Lesson Of Dreaming Pg 262 So many times families are told to be realistic. However, the way that systems and services have changed for individuals with DISABILITTES and their family members is through the visions generated by families themselves. One of the greatest gifts family members can give to each other is the permission to dream, to articulate their dreams to others, and to provide each other with support to make those dreams happen. Futures planning or person-centered planning are techniques that support individuals in "dream catching", articulating dreams and planning to bring dreams alive. These processes support individuals as seeing people as a whole, in acknowledging that the person and those who love the person with a DISABILITY are the best experts and authorities - they know the person best. None of us knows whether our dreams will come true: but those dreams provide us with the momentum to take action and to take risks as we work in the direction of our dreams. With any dream comes the risk of disappointment, of anxiety, of some fear: in the words of Helen Keller," Security is mostly superstition. It does not exist in nature, nor do the children of men and women as a whole experience it. Avoiding danger is no safer than outright exposure. Life is either a daring adventure or nothing." To often, when a person meets someone with a DISABILITY all they see is the DISABILITY. Person centered planning supports people in seeing the positive characteristics, attributes, and gifts of the person. This process of futures planning helps to identify the preferences and desires of the person. It is a process that believes that all people have important gifts to contribute: it is up to each of us to uncover and discover these gifts and support people in sharing their gifts with others.


Posted by Denise Lavelle on 8/20/2008 at 1:06:22 AM EST.
Subject:  info to join Early Intervention Family Alliance
FREE enrollment in the Early Intervention Family Alliance (EIFA) to all families who have a child in early intervention! (www.eifamilyalliance.org) Keep informed! Obtain Answers! Impact Policies! The Early Intervention Family Alliance is a national group of family leaders dedicated to improving outcomes for infants and toddlers with disabilities and their families. The EIFA works to assure meaningful family involvement in the development of Part C policies and their implementation at community, state and federal levels. Members receive email alerts and updates on key early intervention topics and can join the EIFA list serve to participate in active discussions and share experiences. For membership questions please send an email to info@eifamilyalliance.org or for more information go to the website at www.eifamilyalliance.org.


Posted by Stacey Hughey on 8/17/2008 at 12:24:57 PM EST.
Subject:  Free Community eNewsletter from NEIS
Hi! I have 3 beautiful daughters. My middle daughter, Jordana has multiple disabilities. I also work as the Editor for a community newsletter filled with activities, events, and resources for families of children of all abilities. This newsletter is free and is sponsored by NEIS. To sign up, email me at NEISnews@aol.com and say "sign me up" in the subject line. I think you'll enjoy our community eNews! I look forward to hearing from you!


Posted by Shauna Buxton on 6/10/2008 at 5:38:56 PM EST.
Subject:  Resources for You
I am the Family Resource Coordinator at Nevada Early Intervention Services. I have 4 children with special needs. I personally have cerebral palsy and was a micropreemie at birth. I have many resources on various topics. Please feel free to send me a note if you are interested in specific topics or information. I can be reached at Nevada Early Intervention Services. sbuxton@health.nv.gov or 688-1341


Posted by Denise Lavelle on 5/20/2008 at 1:27:09 PM EST.
Subject:  Parenting with a disability.
I would like to introduce someone who will be blogging for the next month or so. Shauna is a mom to 4 children, all who have disabilities. She also has a disability and over the years has dealt with the lack of resources and support for parents with disabilities that are raising children. There are a lot of resources about raising children with disabilites, but very few about parenting when you have a disability. Shauna will be blogging about her experiences. We welcome you to add your questions or comments.


Posted by Daniel Dinnell on 4/23/2008 at 3:02:45 PM EST.
Subject:  2009 Families First Conference
MARK YOUR CALENDAR NOW!!! Conference 2009 Families First: “Imagine The Possibilities” A Conference for Families of Children and Young Adults With Disabilities or Special Health Care Needs, and The Professionals Who Support Them Friday, October 2nd & Saturday, October 3rd Joe Crowley Student Union, University of Nevada, Reno The 2007 “Families First” biennial conference in Las Vegas was a great success with 280 attendees on Saturday! Ten attendees came from outside of Nevada. The 2007 conference had 64 concurrent sessions, two Keynote Presenters, two special guest speakers, with appearances by Senator Dina Titus and First Lady Dawn Gibbons. Families and professionals also had the opportunity to visit 19 tables representing resource organizations, agencies or programs, eat, and even enjoy some entertainment. More information at www.familiesfirstnv.org Or call Project ASSIST at 1-800-522-0066 The 2009 conference will provide even more information benefiting families, administrators, advocates, medical professionals, educators, caregivers, policymakers, and others providing support and care for children or young adults with disabilities or special health care needs. • Learn from national and local speakers on various topics of interest, such as early intervention, education, recreation, health care, mental health, building community, family support, inclusion and transition. • Participate in discussions facilitated by advocates and parents. • Meet, network and make connections with other families and professionals. • Work collaboratively to strengthen ties and enhance family support. • Examine the products and services offered by various organizations in the exhibit hall.


Posted by Nora on 4/19/2008 at 2:44:11 PM EST.
Subject:  CP Parent Network Meeting
The next CP Parent Network Meeting is Sunday, April 20th from 4-6pm at Advanced Speech and Language Associates, 895 Roberta Lane, Sparks. For more info contact Nora at 832-6890 or cpparentnetwork@hotmail.com


Posted by Daniel Dinnell on 4/15/2008 at 6:29:12 PM EST.
Subject:  Thinking of the future
A letter I recieved from an inquiry. Hi Dan, Thanks for your inquiry! Our Center spent quite some time talking with families (via focus groups and telephone interviews) about their hopes and dreams for their children. These were families of children from birth through age 22 years, with and without disabilities. We wanted to know if these hopes and dreams differed in the presence of a disability, and whether parents planned the same or differently, and if families were able to foresee a positive future for their child. We were also interested in whether there might be certain milestones or specific people or events that precipitated or fostered the onset of more long-term planning. We found that most of the families of children with and without disabilities had concrete hopes and dreams for their child's future and thoughts about how to reach that goal. Families of children without disabilities had more academic or post-secondary educational goals, but all families wanted their child to be happy, have friends, work at a job they enjoyed, and live as independently as possible. Another distinction that might be made is that many families of young children with disabilities are consumed with unique day-to-day demands in raising their child that families of children without disabilities do not have to deal with, i.e. scheduled therapies, regular doctor/hospital/ clinic appointments, health concerns, early intervention schedules, etc. These added responsibilities and demands can interfere with a family's ability to adopt or incorporate a "futures" planning approach to their child's IFSP or IEP. We believe it is never too early to talk to parents of children with disabilities about what is possible and to encourage them to begin to look toward the future. To do this, professionals must become knowledgeable about what is happening with the older population of children with disabilities. When families have the "big picture" as their goal, IFSPs and IEPs can be written to support it. Thanks for your interest! Cathy Cathy Beard Family Support Specialist Early Childhood Center Indiana Institute on Disability & Community Indiana University - Bloomington 812-855-6508 beardc@indiana.edu http://www.iidc.indiana.edu


Posted by Nora Behrens on 4/7/2008 at 6:08:32 PM EST.
Subject:  New in the Discussion Forum!
Check out the discussion forum to "Ask the Professional" the questions you having been looking for answers to! April is Occupational Therapy month, so come by and let us know what's on your mind....


Posted by Denise Lavelle on 3/25/2008 at 2:54:56 PM EST.
Subject:  Don't Forget Dads
Thanks Dan for the post. It is interesting to hear about what dads go through. We all seem to have a good idea of the stress on moms but don't tend to think about dads as much.


Posted by Dan Dinnell on 3/21/2008 at 4:40:20 PM EST.
Subject:  Don't Forget Dads
Came across this 2004-5 Dissertation the other day and condensed it for placement. I think it is quite accurate. But I am a Dad and not a Professional. Abstract …fathers of children with disabilities encounter possible unique challenges profoundly affecting levels of stress and family adaptation is a phenomenon which has warranted further study…Therefore, in this study, fathers with non-disabled children and fathers with disabled children were compared with regard to their stresses, coping, and life satisfaction. …A survey research design was employed that utilized a total sample of 212 fathers ... Of the 212 fathers, 127 reported having a child without educational disabilities and 85 reported having a child with educational disabilities… The findings indicated that there were differences between the two groups. Fathers of disabled children experienced greater levels of family stress, more occurrences of parenting daily hassles, greater degree of difficulty related to parenting daily hassles, less variety and number of family resources, less individual sharing of problems, more emotional and physical health symptoms, greater parenting stress, and less overall satisfaction with life... Conclusion The findings of this study contained many contributions for the field of family science. For fathers with disabled children, one of the most interesting aspects of the findings highlighted the notion of chronic loss and sorrow, as well as grief-related reactions pertaining to their children… …It would appear from this present study that fathers of disabled children need someone with whom they can communicate, share feelings and problems, and gain understanding without blame or rejection (Wright, 1976)… Another contribution that surfaced from this study was the idea of emotional turmoil experienced by fathers in the rearing of their disabled children. Many of the fathers in this study were employed fulltime and most likely already dealing with typical work-related stresses. Therefore, adding a disabled child with Attention Deficit Hyperactive Disorder (ADHD) who has difficulty focusing and paying attention would likely increase stress and family turmoil for these fathers. Moreover, the administration of medication and time spent in structured discipline would only compound the family and emotional chaos for fathers with disabled children. It would also be reasonable to say that they are overtaxed and exhausted and this may contribute to the feelings of instability. Marital satisfaction and overall life satisfaction are two other areas, which were identified within this study. Although marital satisfaction was not assessed in this study, responses from the fathers suggested that it warrants further investigation… Although the results of this study demonstrated that fathers of disabled children experienced increased stress associated with life changes, decreased levels of coping, increased levels of stress, and lower overall life satisfaction compared to fathers with non-disabled children, one should not necessarily assume this to be totally negative. There is clearly a difference between fathers of disabled and non-disabled children…As researchers continue to work toward a clearer understanding of how stress and coping function, it will continue to be important for fathers with disabled children to find unique ways in which they can successfully manage ongoing stressful life situations. THE FLORIDA STATE UNIVERSITY COLLEGE OF HUMAN SCIENCES FATHERS OF CHILDREN WITH EDUCATIONAL DISABILITIES: THE ROLE OF STRESS IN LIFE SATISFACTION. By JOHN WEIR STRACHAN, JR. A Dissertation submitted to the Department of Family and Child Sciences in partial fulfillment of the requirements for the degree of Doctor of Philosophy Degree Awarded: Summer Semester, 2005


Posted by Nora Behrens on 2/8/2008 at 4:09:40 PM EST.
Subject:  CP Parent Network Meeting
The next meeting of the CP Parent Network will be Feb 24th, 4-6pm at Advanced Speech and Language, 895 Roberta Ln Sparks, NV. For more information, contact me at 775-832-6890


Posted by Nora Behrens on 2/8/2008 at 1:37:58 PM EST.
Subject:  Your Question
Hi Virnalyn Which article would you like to know more about? I have lots of information about kids with disabilities/delays and community resources that I would be happy to share with you.


Posted by virnalyn porte on 2/4/2008 at 10:57:39 AM EST.
Subject:  special children
i would like to know more about your article


Posted by Nora Behrens on 12/3/2007 at 12:22:44 PM EST.
Subject:  Welcome!
Welcome to the new Friends of Special Children Website! Please check it out, post a question/comment on our discussion forum if you like, and check back often for new features and updates.


 
 
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