Sunday, June 2, 2013

Resources for you



Each month, Family Voices Indiana provides the families we serve with a summary of month’s hottest items. If you missed us on Facebook, here is the latest!

May Awareness:
Brain Tumor Awareness. Learn more about brain tumors here.

Ehlers Danlos Syndrome Awareness Month. Learn more here: http://www.nlm.nih.gov/medlineplus/ehlersdanlossyndrome.html.

Celiac Disease Awareness. Celiac disease is an autoimmune disorder triggered by the ingestion of gluten, a protein found in wheat, barley and rye. An estimated 1 in 141 Americans has celiac disease, yet 83% of those who have it are either undiagnosed or misdiagnosed. Find additional information and resources here: http://www.celiaccentral.org/awarenessmonth/.

Cystic Fibrosis Awareness Month. 30,000 children and adults have CF in the United States. More than 10 million Americans are symptomless carriers of the defective CF gene. About 1,000 new cases of cystic fibrosis are diagnosed each year. Learn more here: http://www.cff.org/AboutCF/.

National Foster Care Month. Find resources and information to help ensure make a child’s future bright: https://www.childwelfare.gov/fostercaremonth/.

Seasonal Allergy and Asthma Awareness Month. Find additional resources here: http://www.cdc.gov/Features/AsthmaAwareness/http://www.aanma.org/.

Better Hearing and Speech Month raises awareness about communication disorders and promotes treatment that can improve the quality of life for those who experience problems with speaking, understanding, or hearing. Find additional resources here: http://www.asha.org/public/default/.

May 5-11: Children's Mental Health Awareness Week. You can find resources here: http://www.ffcmh.org/resources/families.
Nurse’s Week.

Teacher Appreciation Week.
May 7: Teacher Appreciation Day. If you didn’t take the opportunity already, be sure to thank your child’s teachers for all they do.

May 10: Child Care Provider Appreciation Day. Thank a provider that's made a difference for your child. If you need help locating child care, you can find more info here: http://www.childcareindiana.org/childcareindiana/ptq.cfm.

May 12-18: Food Allergy Awareness Week. Food allergy is a serious medical condition affecting up to 15 million people in the United States, including 1 in 13 children. Whether you’re newly diagnosed or brushing up on the facts, learning all you can about the disease is the key to staying safe and living well with food allergies. Find more info here: http://www.foodallergy.org/tools-and-resources/getting-started.

May 14: Apraxia Awareness Day. Childhood Apraxia of Speech (CAS) is a motor speech disorder that first becomes apparent as a young child is learning speech. Learn more here: http://www.apraxia-kids.org/guides/family-start-guide/.

May 15: National MPS/ML Awareness Day. MPS disorders limit the body's ability to produce certain enzymes needed for metabolizing complex sugar molecules. These disorders are progressive and cause cellular damage which severely diminishes quality of life and dramatically shortens the lifespan of those affected. Learn more here: http://www.mpssociety.org/diagnosis/.

May 19-25: Eosinophil Awareness Week. A growing number of children and adults suffer from a chronic and complex group of diseases described as Eosinophilic (ee-oh-sin-oh-fill-ick) Gastrointestinal Disorders (EGIDs). These disorders are characterized by having above normal amounts of eosinophils, a type of white blood cell, in one or more specific places anywhere in the digestive system. Learn more here: http://apfed.org/drupal/drupal/.

Trach Awareness Week. The goal of this week is to “destigmatize children, youth, and adults living with and thriving via tracheostomy tube usage as medical-life support.” Help spread awareness about people with trachs, who go to school, work, play sports, and live life to the fullest, with a little assistance from a tracheostomy tube.

May 19: World IBD (Inflammatory Bowel Disease) Day. IBD affects an estimated 1.4 million Americans. You can connect with the Indiana support chapter here: http://www.ccfa.org/what-are-crohns-and-colitis/.



Family Voices:
Check out our Family Voices Staff Spotlights! This month’s page featured specialists Jan Labas, Traci Kurmay and Emily McKinley.
Facebook fans liked our many inspirational quotes. Be sure to check out our page for a pick-me-up.
"The special part about being the parent of a child with special needs is not how much you love that child, as love doesn't see differences, but how you learn to see positive stuff where others would only see challenges. Yes, we (parents of kids with special needs) get challenged in many ways, and if you look at it from the outside, you may be deceived, seeing some sort of superhero fighting for the rights of their kids. In reality, the only thing happening, is a regular parent doing his best to learn and cope with a life that was never part of the plan." Read the entire article here.
"It’s going to be the proverbial emotional roller coaster, these next ten years. You’ll have moments where you’re feeling so high, only to crash back down. But know this - You will grow. You will amaze yourself. You will let go of fears. You will embrace the now. And you will love this amazing, beautiful happy child so much, it will hurt. And you will be okay with that."Read the entire article here: http://phoebeholmes.com/2013/05/22/to-the-me-of-ten-years-ago/, and consider sharing it with another mom.
We liked this celebration of the special needs mom on Mother’s Day:
Dear Mom,
You ignore the words of others telling you what I cannot do, and then fill the hours of every day telling me what I can. 
Every day, you see other kids doing more, yet you celebrate me. Pushing away sadness, you focus on the hope of my future. You let my simple, small steps lead us forward."
Read the entire note here: 
http://www.huffingtonpost.com/suzanne-perryman-/mothers-day-letter-for-a-special-needs-mom_b_3223043.html.
 
"We are pleased to inform you that you have won the title of Mom of the Year. Congratulations!" Read the entire list of why you deserve this honor here: http://www.lovethatmax.com/2013/05/congratulations-youre-mom-of-year.html.
 
"Why am I telling you all of this? I guess because I want all of you to know that every special needs child...and every special needs child's parent...has a story. They aren't just a case number...or a last name on a file. They are people with real fears and real anxiety and hopes and dreams for the future. They hope and pray that they meet up with administrators and therapists and teachers and school districts that will see them. I mean really see them…” Read the entire article here: http://www.kateleong.com/2012/02/to-whom-it-my-concern.html.
 
"Who knew that an intentional wave could make a mother cry? I’ll tell you who. A mother to a child who is nonverbal. Our daughter Evangeline waved ‘bye bye’ to her father before getting on the bus. That matters … It matters so much. And I realize.  She is speaking … we just have to slow down enough to hear her." Read the entire article here:http://www.gillianmarchenko.com/parenting-a-nonverbal-child/.


Training and Learning Opportunities:
Family Voices works to fulfill our mission of empowering families by providing you with educational opportunities and resources. Check our website frequently for learning resources by visiting: http://www.fvindiana.org/trainingThis month, we shared the following on Facebook.
Many families are finally being targeted for the Family Supports waiver and with that comes a host of more systems and services to navigate. We've created two new fact sheets about the waiver journey for families. You can find them on our website here: http://fvindiana.org/Articles/Family_Supports_Waiver_Journey_1.pdf
http://fvindiana.org/Articles/Family_Supports_Waiver_Journey_2.pdf
If your child is receiving waiver services and you need resources to ensure your child has adequate risk plans and other safety measures, check out these links: http://www.in.gov/fssa/ddrs/4247.htmhttp://www.in.gov/fssa/ddrs/3948.htm.
Take action to improve and maintain your family's health by accessing customized prevention information and tips for each member of your family. Learn more about the My Family app here: http://lyfechannel.com/healthfinder_app/.

2013 marks the inaugural year for the Indiana Youth Leadership Forum. It will be an exciting, 5-day leadership program that provides information on everything from technology to resource agencies, and helps the students create a "Personal Leadership Plan" to help them reach their future education and career goals. The event is FREE to student delegates and volunteers. They are also seeking mentors for this event. See the link for more info: http://www.inylf.org/.

Safety is a vital concern for families affected by autism and other disabilities. Find resources here: http://nationalautismassociation.org/five-affordable-safety-tools-for-wanderers/

You can view a new film about Restraint and Seclusion here: http://www.youtube.com/watch?v=pD4U0mQL2uI

Summer vacation means a relatively relaxed daily routine. For many families, it’s the perfect time to model and teach life skillsHere are 10 summertime activities that introduce concepts in social skills, communication, organization, self-care and respect for self and others:
http://www.friendshipcircle.org/blog/2013/05/14/10-activities-for-practicing-life-skills-this-summer/


Newsworthy:
We've created a FB page for our Latino families who prefer information in Spanish and/or would like to connect with other families. Check it out: https://www.facebook.com/VocesDeFamiliaDeIndiana.
Did you know we're on Pinterest, too? Check out our boards at http://pinterest.com/fvindiana/
Our hearts go out to those in OK affected by the tornadoes. It's especially important to have an emergency plan for those with disabilities because it is typically a more involved process. Get more info here: http://www.cdc.gov/Features/EmergencyPreparedness/.


Collaboration:
Family Voices encourages you to use your voice to influence care, public and private policy, and educate others. In that vein, we strive to share with you opportunities to collaborate with others to improve the systems we engage. Here are some upcoming opportunities:
My name is Kristen Joyner, and I am a doctoral candidate in the School of Psychological Sciences at the University of Indianapolis. I am conducting a research study to examine the school experiences of children with Autism Spectrum Disorders including Autistic Disorder, Asperger’s Syndrome, and Pervasive Developmental Delay – Not Otherwise Specified. Specifically, I would like to examine the potential relationship that exists between the frequency of bullying that a child with an Autism Spectrum Disorder experiences in an educational settings and the extent to which their diagnosis has been disclosed to teachers and peers. It is my hope that the current study will shed some light on the potential relationship that exists between disclosure of diagnosis and bullying, and provide a better understanding of how we might improve the social interactions that children with Autism Spectrum Disorders have at school. As parents and caregivers of a child with an ASD, you have insight into the social experiences of your child. Your participation is this study would be greatly appreciated and will aid in achieving the goal of this study.In order to participate, you must be a parent or caregiver of a child with an Autism Spectrum Disorder. If you would like to participate in the study, please click on the link below and you will be directed to the online survey: https://uindy.qualtrics.com/SE/?SID=SV_2bj58V5M55w7DFz. This survey is brief and will take no more than 10 minutes to complete. Your responses are anonymous. Thank you in advance for your time! If you have any questions about this study, please feel free to contact me at joynerk@uindy.edu or Dr. Tyronn Bell at tbell@uindy.edu. This research has been approved by the University of Indianapolis Institutional Review Board. 

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