Posts Tagged ‘ Special needs ’

When Parents Wish They Never Had Their Child With Disability

Friday, October 24th, 2014

“While I do love my son, and am fiercely protective of him, I know our lives would have been happier and far less complicated if he had never been born. I do wish I’d had an abortion. I wish it every day.” Those are the shocking words I read this morning, in a Daily Mail article, said by Gillian Relf, 69, mom to Stephen, 47. The piece has gotten a lot of attention, as did another recent one by the same publication in which other parents of a child with disability also said they would have terminated their pregnancy.

Let’s set aside the fact that this is a newspaper that thrives on shocking people into reading it. These are still real sentiments coming from real people. I read them with both sadness and heavy disappointment about the message they were implicitly conveying to the masses: That kids and adults with disability are damaged, lesser human beings who can ruin people’s lives.

As the parent of a kid with cerebral palsy, I completely understand the struggle with accepting a child’s special needs. Many of us contend with that. Just this week, I was musing about the ghost of that other child—the one I expected to have. In general, though, I’ve come to a place where Max’s disability is a part of who he is. Not every parent of a kid with special needs feels that way, of course, or needs to. Mom Gillian Relf is from a different generation; I wonder if she’d think otherwise if she had the resources and social media support that parents of kids with special needs have these days.

Still, making a public proclamation that you wish you’d aborted your child with Down syndrome is unfortunate. It’s downright painful to those of us who are out there doing our best to get the world to accept and include our children, which is often an uphill battle. It’s a free world and of course, any parent has a right to speak her mind—but I can’t but help but feel disturbed when people set back progress the rest of us have made for helping the world welcome children with special needs.

From my other blog:

The ghost of the child you expected yours to be

An extra chromosome does not define people with Down syndrome: Love this video

The amazing two words a kid said about my son

 

Image of empty baby stroller via Shutterstock

 

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Let’s Convince Others How Capable People With Disabilities Are

Tuesday, October 7th, 2014

If you have a child with special needs, you know what an uphill battle it can be getting people see the ability in disability. Now imagine that your child is an adult—and the challenges both of you will face convincing people to hire him. I don’t dwell on this too much, since Max is still a kid, but it’s there in the back of my mind. The stats aren’t very reassuring: About 85 percent of adults with developmental disabilities did not have a paid job in the community between 2012 to 2013, per the most recent figures from National Core Indicators.

Aiming to change all that: the I’m In To Hire campaign that seeks to raise awareness about the lack of employment for people with intellectual and developmental disabilities—and get companies to take a pledge to support them. The campaign is spearheaded by Best Buddies International Founder Anthony K. Shriver and billionaire business magnate Carlos Slim. “People with IDD are incredibly talented, loyal, hard-working and driven individuals who have the ability to contribute to the workplace but unfortunately they are disproportionately unemployed in our nation and beyond,” said Shriver. “The impact individuals with IDD have made on our society is beyond exceptional and the workplace should be no different.”

Employers may be further convinced by the findings of a 2014 report, Employing People with Intellectual and Developmental Disabilities, done by the Institute for Corporate Productivity. Researchers surveyed major organizations who currently employ people with IDD. Their findings:

•   57% reported the addition of highly motivated employees who are good talent matches
•   43% said it produces measureable and observable business benefits
•   47% reported an inclusive culture attractive to talent pool
•   60% said it supports their diversity and inclusion strategy

Employers can pledge their support here, and Best Buddies will follow up to facilitate the hiring. You can show your support by tweeting or Facebook-posting one of these messages:

It’s more than the right thing to do. See the business benefits of employing people with intellectual and developmental disabilities: bit.ly/ImInToHire

I see people with special needs as skilled and employable and #ImInToHire for an inclusive workplace. RT to join me! bit.ly/ImInToHire

People with w/ intellectual and developmental disabilities build fantastic friendships and productive businesses. #ImInToHire, are you?

Our kids may be years away from job interviews and collecting paychecks, but we need to support initiatives like this for the sake of adults with disabilities and the adults our children will someday be. But it’s also an initiative that can benefit our children now. Anything that helps people better understand that people with special needs are capable brings us that much closer to a world that accepts and respects our kids.

From my other blog:

Special needs families: Not so different from other families

A gym refuses to host a birthday party for a boy with Down syndrome

What my child with cerebral palsy taught me: Parents share

 

Image of man holding out hand for handshake via Shutterstock

 

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Cerebral Palsy Breakthroughs—And Your Chance To Make A Difference

Wednesday, October 1st, 2014

Today is World Cerebral Palsy Day, a day that’s all about ideas that will change the world for people with cerebral palsy. Last year’s winners include a designer walker and a spill-proof cup. I have an idea—but the thing is, it already exists. The concept: More research for cerebral palsy. Some 17 million people across the world have cerebral palsy, and an estimated 350 million are closely connected to a child with CP. It is the most common childhood physical disability—and yet, there’s been a severe lack of federal funding for research into treatment and prevention.

One woman leading the charge: Cynthia Frisina, executive director and founder of Reaching for the Stars and mom to a daughter with CP. Her non-profit recently co-funded research at Kennedy Krieger and Johns Hopkins that showed the brains of kids with CP have more plasticity—and potential for recovery—than previously believed. In March, Cynthia testified before Congress to push for more funding for CP research. Now the 2015 Committee on Appropriations is urging the National Institutes of Health to develop a five-year strategic plan for CP prevention, treatment and cure, and pushing the Centers for Disease Control to build on research methods. As Cynthia says, “Never before that we know of have the words ‘prevention, treatment and cure’ ever been used in conjunction with cerebral palsy in U.S. federal legislation. This is a tremendous step forward.”

Also on the frontier of the research landscape: The CP Genetic Research Network. Principal investigator Michael Kruer, a pediatric neurologist and CP genetics researcher, answered some questions:

Dr. Michael Kruer

In a nutshell, what’s known so far about the genetic component of CP? 

Genes are the DNA “recipe” that contain the instructions needed to build a human being. Some control things like hair or eye color. Others are critical for brain development. Cerebral palsy genes fall in this latter category. If a gene is missing or if the genetic code is incorrect, (a “mutation”) this can alter the blueprint and affect that gene’s function, disrupting neurodevelopment. Mutations can arise in many ways. Most participants in our study do not have a family history of CP, but some do.

To be quite honest, there is more that we don’t know about CP genetics than we DO know.

• We do know that out of the 25,000 or so genes in the human body, mutations in just one gene can cause CP in many cases. Current estimates indicate that literally dozens of genes that cause CP are waiting to be discovered.

• Another thing we do know is that of the handful of CP genes known, several map to the same pathway. Our studies indicate that these genes control the way brain cells connect to and communicate with each other. In the laboratory we have begun testing compounds that can improve these connections with very promising results.

What are you still hoping to discover about the genetic component of CP?

The goal of the CP Genetic Research Network is to transform the state of the science in CP. Our efforts will allow us to discover new genes as the cause of CP in our participants. For any participant, if we discover the cause of their CP, we can share that information with them if they wish. Some genes are likely to map to the CP pathway we have already identified. Others will point us in exciting new directions.

Could this prevent cerebral palsy down the road in unborn infants?

We’re not yet at this point with other offers, but other research in CP is aimed at this.

How will pinpointing genetic causes of CP be of help to future generations of children?

Through these efforts we seek to develop completely new ways to treat CP, not by treating symptoms but by targeting the underlying neurobiological problem. We will be able to develop completely new medicines, targeted to treat what goes wrong in cells rather than symptoms. We will accomplish this by better understanding the biology of the disorder.

How could knowing the genetic causes of CP help kids who currently have the disorder?

For many families, there is a sense that there is SOMETHING that caused their child’s CP, even if no one has been able to able to identify what that is. Some might even think that the cause is known, but in retrospect, there might be more to the story. Our studies are hoping to bring closure to what for some has been a long journey, filled with many office visits and tests. So, we may be able to offer answers as to WHY. Some parents have told me such answers can help them shake off years of unfounded guilt.

I know you’re recruiting for your study. Can you share more about it?

We want to understand what causes CP, and we are targeting those with CP of unknown origin—no premature, no known stroke—with the belief that many of the participants, children and adults, will have a mutation in a single gene that lead to their CP. We will provide an individualized, state-of-the-art evaluation of their genetic code and compare their code with that of their healthy mother and father. On an individual level, for many participants this will allow us to determine the cause of their CP. On a larger level, we think that many people will have mutations in the same genes and that these genes will converge on common pathways that shed new light on brain processes that lead to cerebral palsy when something goes wrong.

In order to enroll, both parents and their child with cerebral palsy need to participate in order to get the most information possible. There is no age limit as long as all three participate. Participation is simple. We send a study kit directly to your home and a swab is brushed on the inside of both cheeks. The samples are then simply dropped in the mail. To get more information, those interested should contact our study coordinator Jessica at kruerlab@sanfordhealth.org. There is no cost to participate but enrollment is limited to the first 100 parent-child trios. Those who enroll by October 3 will receive a free gift card for their time.

Head on over to the World CP Day website and post an idea for something that could change the world for your child with cerebral palsy or others who have it—think a product, technology or service. I encourage you to nominated Reaching for the Stars as your charity/organization, because the organization whose supporters share the most ideas before October 31 2014 will win $10,000.

From my other blog: 

What my child with cerebral palsy taught me: parents share

The shocking lack of cerebral palsy research

Why you shouldn’t pity my child with cerebral palsy

Life with Cerebral Palsy
Life with Cerebral Palsy
Life with Cerebral Palsy

 Infographic courtesy of World Cerebral Palsy Day

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What Kids Want To Be When They Grow Up: A Fascinating Poll

Tuesday, September 30th, 2014

The number-one job kids would like to have they grow up: superhero. That’s per a new poll of 3910 adults who are parents to children under age 10. Other career aspirations that top kids’ lists (in descending order): celebrity, doctor, President of the United States, teacher, prince/princess, astronaut, chef, police officer and Santa. (Apologies, Santa.)

The majority of parents, 65 percent, said they would like their children to someday follow in their career footsteps. Parents noted that the top things they believe are influencing their kids’ ambitions are TV shows and movies.

Both my kids think they know what they want to be when they grow up. Actually, with my son, it’s more like an obsession. We are not sure how or why Max decided on a career as a firefighter, but he talks about it all the time—and wears a plastic Fire Chief hat as often as he can (school and bathtime excluded). Max may have disabilities, but who am I to discourage him? Perhaps, someday, there will be a position for him in a fire department. For now, he is content to visit our local fire station every weekend. This past weekend, we took him to the FASNY Museum of Firefighting in Hudson, New York, and it was like he had reached nirvana, so blissful was he.

If I had answered that poll, conducted by Coupon Codes Pro, I would have said that parents are most likely shape their children’s career aspirations. My daughter wants to be a writer and editor when she grows up, just like Mommy. She’s started her own blog, and posts when she feels like it. I have to admit, I love it. I saw it coming: Back when she was little, one of her favorite games was for me to write out sentences that had spelling errors, and then she’d fix them with a pencil.

Whatever my kids do when they grow up is going to be fine with me, because it’s not something I can control. I do not know what the future holds for Max, both in terms of his development and the kind of work options that will exist for people with disabilities years from now. I do not know what my children’s interests will be when the time comes for them to choose jobs. Right now, I’m glad they’re taking an interest in work. Whatever career they ultimately choose, I just want them to be happy. 

From my other blog:

Special needs families: Not so different from other families

Those moments when you feel the weight of special needs parenting

What it’s like to live with a hidden disability

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A Happy Ending For The Sick Baby Facebook Dissed

Tuesday, September 23rd, 2014

Yesterday, a miracle happened: Hudson Bond, 9 weeks old, received a new heart. He and his parents have been through a lot in his short life—including some emotional turmoil wrought by Facebook.

When Hudson was born in July with cardiomyopathy, a type of heart disease, doctors told his parents that he’d need a transplant. So his father, Kevin Bond, did what many parents of sick kids do: He created a Facebook page. Kevin hoped that Hudson’s Heart would spread the word about his son’s need for a new heart and raise funds for expenses. One day, he decided to pay Facebook $20 to “boost” a photo of his son lying in the Pediatric Cardiac ICU at Duke Children’s Hospital. Only Facebook rejected the photo.

As Bond wrote on Hudson’s Facebook page, “Facebook thinks my son is offensive.” He went on to share the message he’d received: “Reason(s): Your ad wasn’t approved because the image or video thumbnail is scary, gory, or sensational and evokes a negative response. Images including accidents, car crashes, dead and dismembered bodies, ghosts, zombies, ghouls, and vampires are not allowed.”

Bond was shocked. Attempts to appeal the decision didn’t work, he said. “Facebook, you should be ashamed of yourself,” he wrote. “Of all the garbage you endlessly pedal all over the Internet, a picture of my son is where you draw the line? Disgusting.”

As word began to spread, a Facebook spokesperson issued a seemingly heartless statement: “This was a mistake on our part, and the ad has been re-approved. We apologize for any inconvenience this caused the family.”

The response wasn’t enough for Kevin Bond. As he said, “Inconvenience was never an issue. Having my beautiful son compared to dismembered bodies, vampires, zombies, etc. hurt me, and my family.” Facebook eventually called and explained that an “automated system” blocked the image, then offered $10,000 in free ads.

Baby Hudson isn’t out of the woods yet; doctors are monitoring him to make sure his new heart is working well, and that no complications set in. But he is a lucky kid. As Kevin Wrote yesterday, “He’s a brave little boy, with a brave new hrart, from a brave family suffering an unspeakable loss. From our family to yours, wherever you are, we love you. Please join us in praying for comfort, light and healing.”

Despite Facebook’s major gaff, ultimately social media has done good: People have contributed $141,960 to date on Hudson’s Children’s Organ Transplant Association page alone, plus additional money through other fundraisers. The family plans to donate any extra money to families of children in need of organ transplants.

From my other blog:

A kid for just a little longer: The joys of parenting children with special needs

The best bike ride of my son’s life

Exactly how to deal if you think your kid has lice

 

Images: Facebook, Hudson’s Heart

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