Friday, August 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 in July, here is the latest!

July Awareness:
July 4: Independence Day.
July 22: Fragile X Awareness Day (July is also Fragile X Awareness Month). Check out this link for more information about Fragile X Syndrome: http://www.fragilex.org/fragile-x-associated-disorders/fragile-x-syndrome/.
July 26: 23rd Anniversary of the Americans with Disabilities Act. You can learn more about the ADA here: http://nichcy.org/laws/ada.
July 28: Parents Day—Remember we’re parents, too, and we want to support you!
July is National Cleft Palate and Craniofacial Awareness Month. Learn more here: http://www.cdc.gov/ncbddd/features/cleft-awareness-july2013.html.
 



Family Voices:
Check out our Family Voices Staff Spotlights! This month’s page featured specialists Marlene Lugo and Kerry Bonney
Facebook fans liked our many inspirational quotes. Be sure to check out our page for a pick-me-up. Also, we encourage you to share our page with friends using the share or invite features!
"WE have the power to make something of ALL of our experiences. WE have the power to choose to face our fears and our ‘dragons’ head on. Will it be easy? Not one bit but I have learned that the deeper the depth of despair that we transcend, the greater the lessons. But this then is perhaps the most important part of it: Going through hardships and gaining insight or lessons or self growth is not enough. We must be willing to fulfill our obligation of sharing what we have learned and gained on our journeys." Read the entire article here: http://www.whatiwouldtellyou.com/weblog/slaying-dragons/.
"It’s really simple actually. Just lead by example. If you act comfortable around someone with a disability, your child is likely to follow your lead. Children will have questions and it's ok to answer. If someone with a disability overhears, realize that most of us do not care. We’d much rather you answer your child’s question than to hush them and jerk them away.Sometime it's hard for us to tell other parents how to best handle things, sharing this article might help: http://www.themobilityresource.com/a-life-lesson-about-people-with-disabilities-for-parents-everywhere/.
"Before I had Max, if you'd asked me whether I would have wanted to avoid the cerebral palsy, I would have unhesitatingly said yes. And now, would I make all of Max's muscles move fluidly if I could? Would I give him full range of speech? Yes, I would, assuming he'd agree. And this is where it gets utterly and completely befuddling. Because what I do not wish is for the boy I love to become some other child." Read the article here: http://www.lovethatmax.com/2013/07/if-my-child-could-wake-up-without.html.
In "What It's Like to Have a Brother with Autism", Spencer explains how he and Mitchel are just like "normal" siblings: "We can get on each other's nerves, but we can always sort it out by a wrestling match," he says. Spencer also speaks about his brother's numerous wonderful qualities: "He has this ability to make everyone around him happy ... He makes me a better person, he has taught me to find the joy in the little things he has taught me patience, understanding and perspective." Watch the video here: http://youtu.be/QHC0FzywHGY.
“Parents with special-needs children are often the best resource for each other to get information and support. We agree! Read the article here: http://www.parentmap.com/article/parenting-children-with-special-needs.
"If the Dollars have learned anything from this experience, Pam and Donald say, it’s to never limit someone’s potential. 'Presume competence,' Pam said. 'Presume they’re absorbing everything. Expose them to the world, and never give up. He was 20 years old when his big breakthrough came. It can happen.'" Read the article here: http://www.clarionledger.com/article/20130714/NEWS01/307140053/Autism-After-20-years-he-finds-his-way-out-silence.
"Learning your child has been born with a disability or a life-threatening condition inevitably breaks a parent’s heart. But what happens when your own family — flesh and blood who have promised to love you no matter what — run in the opposite direction?" Read the entire article here: http://www.sheknows.com/parenting/articles/1004097/when-families-fail-parents-of-children-with-special-needs.
"It's OK to grieve the child that you thought you were going to have, because in grieving that, it helps you to celebrate the one that you've been given. I grieve for my son. My daughter. My husband. Myself. But that other boy... Well, he was never mine." Read the article here: http://www.huffingtonpost.com/jamie-krug/grieving-for-the-other-owen_b_3526763.html.
"This is what different feels like—it lives tight in my chest in the place where tears are born. I’m so intertwined with my son Aaron—and protecting him from this pain—that my pain gets all muddled up. If I know I’m different as a mom and I don’t belong, how soon before he knows he's different as a kid? Or does he know already? I shake my head and file that unbearable thought away." Read the article here: http://bloom-parentingkidswithdisabilities.blogspot.com/2013/06/the-invisible-mom.html.



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/training. This month, we shared the following on Facebook.
Just what is "normal" for the human mind? Should the many and varied aspects of autism be considered signs of dysfunction or insights into a broader understanding of what it is to be human? Neurotypical premiered on PBS July 29th and will be available online through August. Find a discussion guide here: http://www.pbs.org/pov/neurotypical/discussion-guide.php. Watch the trailer here: www.pbs.org/pov/neurotypical/trailer.php.
It's almost time for kids to go back to school! Here are some tips for easing the transition:
http://www.care.com/special-needs-easing-the-back-to-school-transition-for-kids-with-special-needs-p1017-q7404574.html.
Have you ever searched online for health information and become overwhelmed by the volume of information that's out there? We're constantly inundated with information from a variety of sources with a great range in accuracy, reliability, and value. There's a tool that can help! Watch this webinar from Genetic Alliance exploring the Trust It or Trash It? tool.
Want to learn more about the changes coming with the Affordable Care Act? This video gives you an understandable overview. If you need more info, feel free to contact us.




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/
We often hear from families about the difficulty in getting IEP meetings scheduled at a time they can attend. A June 13, 2013, the U.S. Court of Appeals for the Ninth Circuit decision provides important reinforcement of requirement of schools to work with parents to ensure they can attend.                 Question - If there are logistical scheduling conflicts for an IEP meeting, is priority given to the schedules of the school staff or the parent?
Answer - Priority is given to the parent. “The attendance of [the]. . . parent, must take priority over other members’ attendance . . . an agency cannot exclude a parent from an IEP meeting in order to prioritize its representatives’ schedules.” (Page 13)
http://www.wrightslaw.com/law/art/dougc.hawaii.pwanalysis.htm.

More than 187,000 clients of the state’s Family and Social Services Administration may have had their personal and financial information wrongly disclosed, with nearly 4,000 possibly having their Social Security number revealed. Clients who may have been affected are being notified by the state, though the state said that “due to the way the the correspondence is printed and mailed, it was not possible to determine specifically which clients had personal information disclosed.” The state, though, is sending letters to those potentially at risk of such things as identity theft to warn them and advise them of steps they can take to protect themselves. Those include placing a “fraud alert” on their credit report, requiring creditors to verify identity before granting credit. Information on that and other steps is available at www.IndianaConsumer.com or by callling FSSA at 1-800-403-0864. Read the entire article here: http://www.indystar.com/article/20130701/NEWS05/307010058/.

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