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A Father’s Fear

March 18, 2013 in Featured by Robert Rummel-Hudson

imageI tried to write about another topic today, something more general, and maybe more applicable and helpful for other parents. But I couldn’t stop thinking about something kind of personal and interior, and so I guess I’m going to write about it here, with apologies and also gratitude for your indulgence.

I want to talk about a kind of helplessness.

The big news story all weekend revolved around the guilty verdict handed down to the two Steubenville, Ohio teenaged boys accused of taking advantage of an inebriated young girl at a party and raping her. It’s an especially ugly case, full of testimony of disgusting text messages, cell phone photos and video of the incident, as well as social media used to continue to violate and revictimize the girl after the incident took place. The story isn’t entirely relevant to special needs parenting, not specifically, but at the same time, it very much feels relevant. I challenge you to find a special needs parent who feels otherwise.

It feels relevant because we know the statistics. They’re not hard to find, nor easy to put out of mind.

In 2007, according to data from the National Crime Victimization Survey, about 47,000 persons with disabilities were victims of rape; rates of rape and sexual assault were more than twice those for people without disabilities. And among that population, people with cognitive disabilities had an even higher risk of being violently victimized than those with any other type of disability.

A Canadian study showed remarkable numbers for sexual assault among different categories of disability. 40% of women with disabilities have been assaulted or raped; 54% of boys who are deaf and 50% of deaf girls; 68% of psychiatric outpatients and 81% of psychiatric inpatients. According to one 1995 study, more than 90% of persons with developmental disabilities will experience some form of sexual abuse at some point in their lives. Almost 50% will experience ten or more such incidents.

And almost all of those incidents of abuse will be carried out by people who are familiar with and trusted by the victims.

As a parent, those statistics are sobering. As a father, or at least as this father, these odds fly in the face of every protective impulse I feel, and I feel a lot of them, all the time. When Schuyler was a little girl, protecting her felt, well, not easy exactly, but it felt possible, at least. Now that she’s thirteen, it seems as if the dangers to my daughter lurk in every darkened space, every hallway at her school, but most of all, those dangers hide in her own trusting and gregarious and naive nature. Schuyler understands a great deal, but she trusts very easily and is eager to meet new people, eager to a fault.

As parents, we can’t be there all the time. In the case of an ambulatory and sociable girl like Schuyler, we as her parents have to face the fact that every year, we’ll have even fewer opportunities to protect her. It’s a rude, cruel and predatory world for kids like Schuyler, and it won’t be any less so for her as she becomes a young adult.

This isn’t my finest blog post, I realize. And I recognize that its greatest weakness is that I simply don’t have any answers. I read those statistics and I perhaps selfishly look for the loopholes, the factors that might be missing from her own life that would make her own chances of being victimized and less than others like her. Those loopholes remain elusive.

When I watched coverage of the Steubenville case, all I could think was “That’s someone’s little girl.” There’s a father out there who took care of her and tried to keep the wolves at bay, and in the end he just couldn’t. I don’t want to feel kinship with that father. I desperately want not to. But I do.

Cowabunga! It’s for the Mommas!

April 27, 2011 in Featured, Giveaways by Julia Roberts

We Celebrate You!

We at Cowabunga Ice Cream celebrate you for your dedication, hard work and loving support that you show your children day in and day out. We admire your hearts, your strength and your stamina. With Mother’s Day being just around the corner, we are honored to offer one of you with a little gift of luxury because you deserve an indulgence.

You are all deserving of a little pampering. We wish we could send each one of you a heaping portion of you favorite flavor of ice cream. Unfortunately, that’s just not feasible. To that end, we have teamed up with the supportive staff here at SupportForSpecialNeeds.com to run a fun little contest. The winner of this contest will receive either 4 pints or 2 quarts (flavors of your choice) of Cowabunga Ice Cream, the world’s first Designer Ice Cream.

Contest Details – In a clever 25 word or less synopsis, tell us about your favorite little luxury that you turn to when you need a bit of indulging. Leave your entries in the comments on this post. We’ll select a random winner from among the entries and they will either 2 quarts or 4 pints of Cowabunga ice cream flavors of their choice.

  • Deadline for entries: May 1, 2011
  • Winner selected/announced by Julia Roberts: May 2, 2011

There is one caveat since this contest involves shipping of frozen food. For this giveaway, we can only ship to a winner in one of the following states:

  • Maine
  • New Hampshire
  • Vermont
  • Massachusetts
  • Rhode Island
  • Connecticut
  • New York
  • New Jersey
  • Deleware
  • Maryland
  • Washington D.C.
  • Pennsylvania
  • Virginia
  • West Virginia
  • North Carolina
  • South Carolina
  • Tennessee
  • Kentucky
  • Ohio
  • Indiana
  • Michigan

Thank you to all of you for the hard work and loving devotion that you display each day. We celebrate you!

We can’t wait to read all of your entries!

ABOUT COWABUNGA ICE CREAM:
At Cowabunga Ice Cream we serve up designer ice creams and frozen yogurt that will bathe your taste buds in luxury. Our small batch (just 5 gallons at a time), handmade production methods ensure a blissful experience each time you indulge.

“This is the Louis Vuitton of ice cream.”~ NY Times Best-selling author Omar Tyree

If you’re in the area, stop in at our shop in Forked River, NJ. For those not in the area, we are pleased to announce that you can now order our high-end ice cream online and have it shipped right to your door. Please visit our website (http://cowabungaicecream.com) for more information.

“It’s easy to be skeptical of ice creamery Cowabunga’s foodie cred…but they pass the taste test.” ~ Wall Street Journal

We Were In Real Life

March 9, 2011 in Featured, From Julia by Julia Roberts

Rody, Our Mascot!

One of the important things about this site is the connection. Connecting with others who can relate is by far one of the best things about coming here and sharing. Here, you can support and be supported. We love to see people talk in the groups and help each other.

One of our 2011 initiatives was to bring that connection to life by hosting small events. Atlanta seemed like the logical choice and so we set out to plan. We knew we wanted it to be educational. Casual. Affordable. We didn’t want it to start to early or end to late. We talked about future childcare options. Large locations, central to Atlanta. Again, affordability. We ended up settling on a 3 speaker format and the theme of Relationships. Personal, medical and educational relationships and navigating them better in a special needs world.

I’m proud and happy to say our inaugural IRL event in Atlanta was a huge success! Thank you to our sponsors that made it affordable for attendees ($15) and muffins and lunch were deliciously provided by Babette’s Cafe.

Presenting sponsor: Celebrate Calm

Additional sponsors: Hewlett-Packard, and Spin Master

How do we define success?

  • Everyone moved in from seats around to gather for lunch to talk.
  • Everyone loved the format of speakers then lunch then speaker then an hour before we left for the day.
  • Everyone asked when the next one was going to be held.
  • Everyone asked to be put on our mailing list.
  • Many people hugged when they left.

We hope to bring this type of event and others to other cities where we have members. If you think you’d like to have one in your city, let us know! With Dawn in Ohio and several community members there as well, it’s the next logical location…and of course, BlogHer! But that’s another type of event altogether.

Thanks for letting us create a different kind of community. One where we can grow and learn from each other and one where we can figure out what kind of community we want! Thanks Atlanta!

 

Special Needs, Special Holidays

December 8, 2010 in Featured Member by Sylvia Ross

Ahhh, the holidays. Time to relax and enjoy having family gathered around you, eating delicious, fattening food before renewing your annual resolution to lose weight, right? Sadly, when you have someone in your life with special needs, it doesn’t always work out that way.

Two days before Thanksgiving 2008, our family received a crushing blow. The baby we were expecting in April was diagnosed with what has been described as “the most devastating congenital defect compatible with life”. Spina bifida. My husband didn’t understand what the doctor was saying. As a nurse, I did. A pall had been cast on the whole holiday season. I had to get through it while worrying about how much it would affect the lives of our entire family. I had to explain to family and friends that we didn’t know how Micah would be affected until he was here and even then we would still have to watch and wait to see what he could do as he grew.

I wanted to hide. But I had a toddler who needed her Mummy to share the excitement of the season and the coming baby. I didn’t want there to be an “elephant in the room” at family gatherings. You know, the thing that is so overwhelmingly big that you can’t help but notice it, and wonder why no one else is talking about it? I didn’t know how friends would accept a “disabled” child. We don’t have family close by and didn’t really have any good friends either, having relocated to Ohio only a year before. My husband works for a school district and shared Micah’s diagnosis with a few of his colleagues. One of the librarians learned of it and after hearing that we didn’t have plans for Thanksgiving, insisted that we come to dinner at her home. I didn’t want to. Our daughter was young enough that she wouldn’t know she was missing out on anything, so why not stay home and not have to talk to anyone? Why not hide from the questions of well meaning strangers? But we didn’t.

I wish I could say I knew we needed to get out and live our lives as usual, but that’s not why we went. We went because my husband, an Aussie, has grown to love turkey drumsticks. And stuffing. And mashed potatoes. And pie. Any excuse to make a pig of himself with unlimited access to food? He’s there. So we went. And I’m glad we did. Yes, it was difficult. Vickie, his colleague, was kind enough to ask her questions about Micah’s health in private, and didn’t share with the rest of the group, so as far as they knew, I was just your average pregnant woman. It helped to know that I didn’t have it written across my face “I HAVE A CHILD WITH SPECIAL NEEDS!” It helped me realize that we will have lots of holidays to celebrate with both kids. Even though Micah has a disability, he has a right to celebrate like everyone else! Christmas was a blur spent with family and friends out of state. I went through the motions, and tried to just concentrate on my daughter’s pure joy over all the pretty presents, lights and fun.

It’s nearly two years later–and Micah has surprised us all. We didn’t know if he would even be able to stand on his own. He not only stands, he loves using his walker to chase his big sister. It has not been easy, though. So far, we’ve been through 7 surgeries and spent our 9th wedding anniversary, Palm Sunday, Easter, the 4th of July, and my birthday in the hospital, courtesy of those surgeries. How do we handle it? Honestly, first I cry. Then, I try to replace the tears with laughter. I bring in treats for the nurses who have to work those days. They don’t exactly want to be there either. My husband brings us food from our favorite restaurant since we can’t get there. Our favorite drinks taste just as good from a disposable plastic cup as they would from an expensive crystal goblet, right? When friends and family offer to help out, I try to find some way to let them help–accepting help is so important when you have a special needs child! One friend in particular brought me a pint of my favorite sorbet when I had to spend my birthday on the rehab floor with Micah, who was recovering from spinal cord surgery. She sat there and enjoyed her own pint of sorbet with me, since my husband was on a business trip. Was it how I wanted to spend my birthday? Oh heck no! I would have chosen to spend it at a fabulous spa being pampered and massaged and treated like a queen! But my little man needed me, so there I was. Sitting on the pull-out couch eating sorbet with a plastic spoon and laughing with a friend.

What have I learned from having kids with special needs? You really have to be flexible in every area of your life. If something isn’t going the way you wanted it to, don’t fight it. Accept it, and make the best of it. Celebrate, no matter what blow you’ve been dealt. As a youth pastor of mine used to say… fake it ’til you feel it. You’ll get there. And your family will thank you.”

Watching The Waters: Respite Center for Cincinnati Families

July 15, 2010 in Special Needs News by Admin Dawn

A new Monfort Heights center aims to give parents a break from the daily demands of caring for special-needs children and teens.

RHC’s Children’s Respite Support Center will celebrate its grand opening 6:30 p.m. Wednesday. The center offers therapeutic services for children diagnosed with both developmental disorders, such as autism or Down syndrome, and mental illness.And while parents are getting a break, their children can get extra help learning how to better manage their symptoms.

via Watching The Waters: Respite Center for Cincinnati Families.

This is a link to a link. Ohio families, click through to read the press release Corey is sharing for families who may need respite. Is respite care available in your community?

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