Group items tagged

I started Hopeful Parents, a grassroots community where parents who understand what it's like having a child with special needs can connect. Consider it a pit-stop in the marathon -- where we can go for attention to our wounds, where we can re-energize our way back on track, where we can look right and look left to see others running too, where we can hear the roar of the crowds cheering us on. Hopeful Parents is a place of common ground. We'll introduce you to our diverse pool of talented, thoughtful writers who will share their stories, their feelings, their ups and their downs. You'll meet parents raising children with physical, psychological, emotional, neurological, sensory, behavioral, social, genetic, and developmental disabilities. Some parents are single, some are married. Some grieve the loss of their child; some grieve the loss of their spouse. You'll also meet healers -- the "medics" who help us through our run. People we can turn to in our pain; people who can help provide some relief.

Research overwhelmingly shows that parental involvement in a child's education improves academic performance. But there are a lot of reasons why parents keep their distance -- including cultural and class divisions. Guests discuss strategies to get parents more involved in their kids' schooling.

I’m 53 and the younger sister of an older brother (by two years) who had undiagnosed Asperger’s while we were growing up (1960s and 1970s). My brother and I grew up with very unaware, self-involved parents. Short story…I spent years in therapy sorting through our family dynamics and learned so much about the kind of parental support needed to raise special needs kids and neurotypical siblings in a balanced home. I’d like to share what I learned. I collaborated with my therapist and wrote a series of tips that will hopefully help parents and caregivers understand and support ASD siblings. My goal is to raise awareness of the need for Autism Spectrum Disorder (ASD) sibling support (the often-overlooked piece of the ASD support puzzle).

On any given day, the feeds of my social media accounts are brimming with resources, stories, and motivation about disabled people: parenting tips, educational advice, how to work with someone who has a disability, etc. About us, but too often not including us. There are countless communities geared towards supporting parents, family members, and professionals, sharing words of encouragement on how to be the best advocates for the disability community. And while I understand such support networks are usually well intentioned, in many cases, they take the power out of the hands of the people who know themselves and their needs best: people who are actually disabled. Don’t get me wrong – allies, or what I refer to as advocate-allies, are incredibly important to advocacy efforts. “Ally” implies being supportive, while “advocate-ally” paints a more accurate picture of people who join in along with self-advocates. And true advocate-allies deserve the utmost respect. But a real advocate-ally is someone who doesn’t overshadow the voices and efforts of the people who experience being disabled every single day. Of course, as a disabled child is just beginning life, parents and professionals have a responsibility to play a key role as advocates. Obviously, a four-year-old wouldn’t be able to discuss medical procedures or know what kind of environmental access modifications are needed, so we can hope that parents will make sound and informed decisions on their child’s behalf. But as disabled children grow older, if they can communicate effectively in any way, then the primary goal should be to embrace the child’s form of communication, working with them to develop their own voice for advocacy. It can become problematic if parents or professionals are reluctant to relinquish their positions of authority and move to the role of advocate-allies, advocating alongside, instead of on behalf of, disabled people. Therefore, as important as it is to step up as advocates, it’s more important to know when to step down.

We receive wonderful stories about parents who have become seasoned and powerful advocates for their children. Now these parents are paying it forward by providing advice and information to others, developing advocacy study groups, or training parents, service providers, and educators in special education advocacy.

Deaf actress Marlee Matlin is exploring an idea for a unique reality TV show: It’s called “My Deaf Family” and it’s about growing up with deaf parents. Matlin created a pilot for the series and made it available for free on YouTube. The show depicts the challenges of having parents with disabilities, but not having those disabilities yourself.

WASHINGTON, DC -- On Thursday, September 27, the National Council on Disability (NCD), an independent federal agency, released “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children” -- a groundbreaking policy study, infused with real life stories of parents with disabilities, to provide a comprehensive overview of factors that support and obstruct Americans with all kinds of disabilities from exercising their fundamental right to begin and maintain families.

The animated characters in your preschooler’s favorite TV show invite her to interact, play and learn. But is she learning? Only a little, according to a Vanderbilt study, which found that educational programming is minimally effective unless parents watch too—and engage the child. In a first-of-its-kind study, parents were trained to pause, ask questions and encourage the child to tell parts of the story while they watched educational videos together. When evaluated, the 3-year-olds whose parents used this simple technique—known as dialogic questioning—showed significant gains in vocabulary and comprehension over those who watched alone.

Last week the Chicago Tribune printed a long piece on biological treatments for autism by Trine Tsouderos and Patricia Callahan, and an excellent piece it was. They clearly understand what the real story is – a subculture of fringe doctors and others who are essentially doing unethical experiments and children with autism. They are exploiting desperate parents (who then sometimes contribute to the exploitation of the next desperate parents) who are seeking any possible help for their children. Of course the desire of parents of autistic children to do everything they can to help them is perfectly understandable. But there is a quagmire out there – an insidious trap waiting to ensnare the vulnerable, in the guise of professionals offering help. So-called DAN (for Defeat Autism Now) doctors and others are offering a slew of experimental and often highly implausible treatments for autism.

My son Ian had a lack of oxygen to his brain at 9 weeks of age and spent 3 weeks in the hospital. Perhaps it was caused by a seizure, perhaps a near-SIDS incident, but we are not sure of the cause. He had a resulting brain injury, with “other developmental disabilities” of autism, blindness, communication impairment, severe cognitive impairment, seizure disorder, and other issues. The brain injury was in 1989, so he is now 23 years old. As you can imagine, this incident devastated our family, at first mostly because we had no clue what to do, what it meant for any of us, how to help him grow, and how much it would change our lives.

The advocacy organisation Autism Speaks estimates there are hundreds of apps built for use on iOS devices, specifically for autism. A search of the Apple iTunes store brought more than 580 autism-related apps, while an Android Market search for autism apps yielded about 250 results. "The more we dig, the bigger the rabbit hole is and we're starting to think tech is a really big key for how we can develop therapies quickly," said Marc Sirkin, vice president of social marketing and online fundraising for Autism Speaks. However, the organisation is cautious about the iPad's popularity. Its quick ascent means no one has actually studied which apps are of therapeutic benefit. Sure, Sirkin said, parents may hear anecdotal stories of apps completely changing a child's life, but there is no measurable proof yet that the apps really work. "The challenge with iOS apps is a lot are developed by well meaning parents but under no guidance with autism experts," Sirkin said. "For us, it brings in questions as an evidenced-based organisation and we're starting to ask: Does any of this actually make any difference... the danger is that the iPad becomes a really expensive toy." But some parents are OK without the proof just yet. Eric Tanner, the father of an 8-year-old with autism, said what the iPad really offers is accessibility and hope that a better life is possible for his child.

I believe it is not ranting or venting to make others aware of challenges that parents and caregivers face when supporting children and adults with diverse abilities. It is crucial that these stories are told to those who can help to bring back the spirit of inclusion, respect, acceptance, friendship, and unity that we so clearly saw during the games.

Click here to download the flyer for this event (PDF) Where: Missoula Public Library When: 6:30pm open / 7:00 pm movie What: A Special Presentation on autism services offered by Easer Seals Goodwill at 6:45pm with the Movie “Autistic-Like, Graham’s Story” to start at 7pm. Childcare provided and an animated family friendly movie will be presented for children. For more information please contact Audrey at 406-850-2977 or Belinda at 406-697-5522. For full details please visit Montana Autism Community Support Network on Facebook

Bright Beacon exists to provide a safe haven for parents of children with medical needs to meet, discuss their children, their children's medical needs, and perhaps even their own personal stories: their victories, defeats, joys and sorrows.

Humans are pattern-seeking primates whose brains evolved to look for and find meaningful patterns in the noise and chaos of nature. When we connect A to B, this process is called learning. Sometimes A really is connected to B, and sometimes it is not. The only reliable way to know for sure is via the scientific method. The problem is that our brains were designed millions of years ago, but science is only a few hundred years old. One of the most nefarious anecdotal patterns in recent years has been a seeming connection between autism and vaccines. Parents whose children are diagnosed with autism (A) search for a probable cause; they remember that they had their children vaccinated (B) and forgivably assume that the correlation is causal. These parents worry for their children, enough sometimes to sue the companies that manufacture the vaccines. But collectively they could contribute to a public-health disaster if enough parents were to stop vaccinating their children and communities began to suffer a return of communicable diseases once thought to be routed.