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Meet Chuck, riding Shotgun on the Coffee Klatch Team

October 19, 2010 in Around the Web, Resources by Admin Dawn

Can you introduce yourself and let us know your involvement in the special needs community?

My name is Chuck Walley and I am the Sunday evening and Wednesday evening co-moderator of The Coffee Klatch. These duties include riding shotgun with Marianne while she conducts here interviews and I sometimes conduct them myself. Occasionally, Marianne hands the keys to me and I moderate where my experience lends itself to the topic.

My roles in the special needs community consist, primarily, of advocating for my 15 year-old son, who was diagnosed with Asperger’s Syndrome.

How did you get involved in The Coffee Klatch? Do you have a specific role there?

I began using Twitter in the spring of last year and I quickly crossed paths with Autism advocates, one of them being Elyse. Her blogs about her sons described my son to the T so we formed a Tweeting relationship. Elyse led me to The Coffee Klatch, where I quickly found many kindred spirits.

What are your goals in your work at TCK? What do you hope people get out of it?

My goal is to evangelize The Coffee Klatch to as many people as possible. We have an outstanding network of experts, advocates and cheerleaders available to anyone for the asking.

Conversely, I hope to make lifelong contacts and friendship with the wonderful people involved with this network. The resiliency, drive and passion exhibited by these parents, experts, teachers and therapists continually inspires and amazes me.

How has being part of TCK changed your personal life? Do you have an anecdote to share about that?

INSPIRATION. My son has Asperger’s Syndrome and raising him is fraught with challenges. However, the parents I’ve met through The Coffee Klatch continue to inspire, guide and challenge me.

During a “fathers only” session we were discussing what we’ve learned from fathering children with special needs. One father wrote, and I’m paraphrasing, “Being the parent of a child with special needs requires you to set aside your fear and embarrassment and step up to learn and better yourself for your child.”

Is there a particular show you’d really like to call our attention to? Why was that one you want to make sure your readers don’t miss?

It is the very “fathers only” chat – it was powerful and inspirational. Fathers today are breaking down barriers and we are not afraid to talk about the issues we face on a day to day basis.

Celebrating The Coffee Klatch

October 18, 2010 in Around the Web, Resources by Admin Dawn

In our continued commitment to spotlighting the best resources for families raising kids with special needs, we honor The Coffee Klatch all this week! Up first is an interview with one of The Coffee Klatch’s founders, Marianne Russo. We encourage you to see what Marianne has to say here and then check out their web site and see all they have to offer the special needs community!

The Coffee Klatch has several resources available for families of kids with special needs. Can you give a quick rundown of all you have to offer?

The Coffee Klatch spotlights all disabilities both physical and emotional with expert guests and internationally renowned children’s foundations. Our guests consist of physicians, psychologists, psychiatrists, advocates and special needs authors. It is our goal to provide the most accurate and cutting edge information available for any particular disorder. We try to offer a comprehensive approach to raising a special needs child bringing on specialists for co-existing issues such as vision, dental and auditory problems as well. The Coffee Klatch offers morning chat sessions Monday. Tuesday and Thursday at 9am est, Wednesday evenings on Blog Talk Radio at 9pm est as well as Special Sunday Editions twice a month. (Click here to see their event calendar.)

Can you tell us how and why you founded The Coffee Klatch?

My goal has been to encourage parents to never give up – leave no stone unturned and keep digging for answers. I often speak and write about the isolation of parents raising a special needs child. Many of these parents are on twitter to share information, seek support or find a friendly ear. Twitter is where I first met Elise and although we initially started tweeting about non special needs issues, we soon found our commonality. We spoke of all the parents that are struggling and the newly diagnosed families looking for direction. I had suggested we start a morning chat to help our fellow special needs parents and give them a place to go each morning to find others and get support. We decided to find two other moderators to help us offer a daily chat who we respected and felt could offer a broader range experience on all disabilities. We launched our chat on January 18, 2010. It became very apparent to me very quickly that many parents were getting misinformation or were not aware of therapies, medication interactions and accommodations for their children. Although we have all been at this for quite a while and are fairly knowledgeable in many areas, we are parents and not medical professionals so I felt it was not our place to give expert advice. I decided to seek out the most respected and renowned experts in the world and invite them to join us – the rest is history.

You’ve put together an amazing group of people to help you. Can you tell me how you found the people who make up The Coffee Klatch team?

The Coffee Klatch team is second to none – really! Elise is synonymous with advocacy, her background and her personal experiences in raising and educating two aspergers sons is invaluable to any parent with a child on the spectrum. Elise has advocated, accommodated and parented her sons to College and brings light to the social issues facing our kids. Jane Hotvedt is the mother of seven children with disabilities and is our go to person for assistive technology. Having one son with cerebral palsy and six others with various other disabilities, her knowledge of therapies is comprehensive. Pierrette d’Entrmont is our “know it because I have lived it” moderator. She herself has Tourette Syndrome and bipolar disorder and now has one child with the same. Her insight and knowledge brings us to a whole different level of understanding on many issues. Pierrette also has developed and manufactures “Kids Companions” a sensory solution chewable jewelry for our sensory kids. Chuck Walley is an incredible father, I first met Chuck as he joined us on our evening sessions to get support in single parenting an aspie teen, I soon knew he was the missing piece to our team He has brought about some of the most emotional discussions we have ever had on the show and shines the light on special needs fathers. The Coffee Klatch is a collaboration – we are a team. It is our differences in opinions and experiences that gives The Coffee Klatch its unique and comprehensive quality. (Note: We will be featuring the rest of The Coffee Klatch team later in the week!)

What are your future goals for The Coffee Klatch?

What are my future goals for The Coffee Klatch? I can’t imagine how we could improve on the format that we already have in place but we are always working together to bring out the best in ourselves and in others knowing that we are each others best resources. I am very proud of what we have done and feel that we are providing a wonderful resource for so many parents. We take great care to ensure that the information we put out is correct and safe. We do our homework and will continue to advocate for integrity and respect for special needs families.

For you personally, what has The Coffee Klatch given you? How has it made your life better?

Personally, I have felt for a long time that I have a message to share, I have found my purpose. The journey with its twists and turns has been difficult and challenging. Getting to the point of true acceptance, understanding that this is a life long journey, that we are our childs best advocates and that with the negatives come the positives is key to surviving and thriving raising a special needs child. It is truly an honor to be able to bring the amazing experts and foundations to struggling families and contribute even in a small way to the special needs community. I am in the process of writing a book, a survival guide for the special needs parent – “The Life Unexpected – The one you were meant to have”. I truly believe that with education will come compassion and hope that we as parents share this education with our children to stomp the stigma for the next generation of special needs children.

The Coffee Klatch has given me more than I could ever give in return. Getting to know and collaborate with this amazing team of moderators has made my life richer in every way. Meeting and interviewing the most renowned experts in the world is an incredible experience and I learn something new every day. I think the most profound impact creating The Coffee Klatch has had on my life is that it really made me recognize the gift. With each child there is a gift which needs to be fostered and cherished. Learning to focus on my child’s gift has been the greatest gift I have ever received.

Aspie Advocate: Helping parents and kids win the IEP game

August 27, 2010 in Insider Insight, Resources by Julia Roberts

Meet Carol Greenburg, Executive Director of Brooklyn Special Needs Consulting, and recently appointed East Coast Regional Director of Autism Women’s Network. I had the pleasure of meeting Carol at BlogHer (well, formally meeting her at a book reading for My Baby Rides the Short Bus, where I had this picture taken) and from the moment I saw her speak at the Autism session at BlogHer I liked her. She has a wicked sense of humor and her delivery and pause at just the right moment is a gift. She wicked smart, too. We’re proud and grateful she allowed us to interview her for Support for Special Needs.

Julia

Can you tell us a little about yourself and your family?

We have three humans and two cats in our house. (Which species outranks which should be obvious to those in a similar position.) My husband, John, is a marketing and publicity genius, owner of Soho Digital Art Gallery, the only gallery in NY dedicated to the display of digital art. He’s also an all-around great guy without whom I can’t imagine doing any of the work I do. I’m a professional juggler, uh, I mean mother, and constant irritating barrier between my eight-year-old and his ever more creative mischief-making. The hardest part of my job, other than housework, is keeping a straight face in the aftermath of his antics. Like my son I’m on the autism spectrum, which legally qualifies us as people with disabilities, but I prefer to think of us as a traveling consciousness-raising team using our autistic superpowers to defeat ignorance and serve justice. Makes trips to the supermarket more interesting. My little boy struggles with a a severe speech delay, and other autism-related difficulties, which he gracefully balances with song, dance, sports and most importantly laughter.

Can you talk a little bit about what you do? An anecdote to illustrate would be great.

As Executive Director of Brooklyn Special Needs Consulting, an advocacy and consulting company that serves Brooklyn and beyond. I walk families through the IEP process, helping them prepare for meetings and attending meetings with them. I consult with institutions about effective programs for special needs students and offer workshops to parents and professionals. As an advocate specifically, I try to help alleviate parent confusion, empower them as full members of IEP teams, and help school personnel to do the jobs they were hired to, but don’t always have the budget or staff-power do. Calm and imagination are an important part of my job, as many discussions about who gets what services can quickly escalate into fights. Fights rarely serve anyone. (Plus they make my ears hurt. Believe me auditory sensory issues can really ruin an otherwise perfectly good day.)

The best way to tone it all down is to acknowledge the wisdom, even if it’s only the most microscopic shred of wisdom, of the people who disagree with you. So when a bunch of teachers tried to force one of my clients, a fourteen-year-old interested in writing, to take what amounted to a study hall rather than the advanced English class he wanted, I picked one word out of the conversation that came up frequently. Self-advocacy. The teachers and administration kept saying this word reverentially and bundling it up in a way I still don’t understand with this kid sitting in a resource room with very little of the structure he needed and could get out of the English class he himself requested. “I couldn’t agree more about the importance of self-advocacy” I began, because that’s what I believe. “The folks from the school seemed pleased as punch. “And at the heart of self-advocacy is a student’s right to choose his own electives,” I continued because I believe that too. Now, my autism interferes with my ability to read facial expressions and body language, but even I know what drooping shoulders and frowns mean. In the end it worked out for everybody, though. I hear my client is thriving in his class, and the teachers are genuinely happy for him.

What was the inspiration for starting this business?

One of my closest friends was diagnosed with cancer a week or so after finding out her son was on the autism spectrum. Since my son got his diagnosis a year earlier and I had a little experience with the special education system We figured that if she could stand aggressive cancer treatment, I could handle a little aggressive advocacy on behalf her child. About three months into the process, I found myself getting him services that no one else had been able to get. That’s when, with my husband’s encouragement, I decided to attend some workshops and eventually turn pro.

Why do you think families have trouble doing this on their own?

A lot of parents are not fully aware of their rights, so they don’t have the proper information upon which to act. But even the best informed parents often need someone else to step in and offer some objectivity. I occasionally lobby for a service or two for my son, and of course I participate in his IEP meetings. But because he has a unilateral placement in a private school, we need to sue every year to get reimbursement for his tuition. We’re lucky to have a terrific lawyer. Now I don’t have a law degree myself, but even if I did, I wouldn’t represent my own family. Just as lawyers shouldn’t represent themselves at trial, I feel that advocates shouldn’t represent their own families at Due Process, unless there are no other options. And while it’s true that, when everyone is behaving cordially, parents really are the best advocates for their own children because no one knows those children better. When conflicts arise sometimes they need someone who isn’t as close to the situation to help them strategize and steer clear of unnecessary escalation. Due process is expensive, time and energy consuming, and inherently adversarial. Sometimes, unfortunately, it’s unavoidable and when it is I’m always happy to recommend lawyers I trust to represent families. But my preference is to try and keep everything in the conference room so that everybody stays out of the hearing room. That works out better for families and taxpayers and yes even for lawyers. No decent special ed lawyer wants to lose a case and set a precedent that might hurt children in the future.

What one piece of advice would you give any parent who has concerns about their child’s IEP?

It depends what the specific concern is. If the IEP lacks clear goals, you’ll need one strategy, but if the IEP is picture perfect, but not being enforced then you’ll need another. Overall, if you feel like your input isn’t heard or valued, you’re probably correct. A very casual disrespect of parent’s expertise in their own children is extremely common. It’s also legally and morally wrong. I recommend all parents set the tone write parent attachments that paints a paragraph-long picture of your child (motivators, special interests, observations of behaviors at home) and provides a list of his or her most urgent needs, ask to read them right after everyone introduces themselves at the IEP meeting.

If you’d like feel free to give us a link to a blog post you think would be helpful for people starting or in the IEP system and finding it challenging. And please provide us a link to the business site (didn’t know if you want someone to come onto the site in a particular area)

I don’t want to overwhelm anyone with information so I’m just going to give you two URLs that I heartily recommend . I worship at the altar of wrightslaw.com. They have a website with a search engine, and a terrific blog. I’m also a member of Council of Parents Attorneys and Advocates, which does require a modest fee to join, but I think it’s well worth the price. If you don’t find what you’re looking for there, you can always contact me at my website www.bklynsnc.com or just come visit to find out more about my work.

Moms-turned-activists expose Santa Barbara’s troubled special education program

August 15, 2010 in Special Needs News by Admin Dawn

Marcia Eichelberger isn’t spending most of her waking hours trying to ensure that her 17-year-old son, Jerrod, gets killer SAT scores and an elite university education.

The best hope that she and husband, Derrick, a Santa Barbara landscape architect, have, is that Jerrod will ultimately learn to partially take care of himself.

Jerrod suffers from autism. Sometimes the Eichelbergers are so worried about what will happen to Jerrod after they are no longer around to care for him, they don’t sleep at night.

It is that fear, as well as regular and healthy doses of anger, that motivated Marcia and a handful of other parents to embark on a remarkable grass-roots crusade to improve the shockingly dismal quality of the special education classes offered through the Santa Barbara School Districts.

via Daily Sound — Special Needs, Heroic Deeds: Moms-turned-activists expose Santa Barbara’s troubled special education program and fight for reform, justice.

Joe Dimino: The Future for Miles

August 11, 2010 in Inspiration by Joe Dimino

Can you tell me a little bit about yourself and your family?

The Dimino family resides in Belton, Missouri (suburb of Kansas City). It includes Joe, Carrie (lovely wife of 6 years), Zen (12-year old brother) and Miles (5). Joe is an IT technician by day and a visual artist, videographer/photographer and writer at all other times. Carrie is a professor of English at the University of Missouri-Kansas City, an avid reader and a skilled writer. Zen is entering middle school this fall and is excellent in both karate and soccer, along with being a very avid fisherman. Miles is going to be in Kindergarten and he loves to swim, play and make art. Our entire family is very close and thrives off the time that we all have together to do a host of things whether in the house or on a run. Carrie and I are conscious advocates for Miles in the autism spectrum and very involved in both of our boy’s lives.

How did you find out about the My Baby Rides the Short Bus, anthology?

My wife, Carrie, follows an Autism support listserv out of Lee’s Summit, MO and someone posted a notice to submit a story for a new book that would be released in the Fall of 2010. From there, I began crafting a story that my wife embellished and made into a workable slice of work that appears in the Short Bus book.

How did you choose to submit “Watching My Son Grow: An Illustrated Timeline from Birth to Three Years Old?”

I really believed in the overall project of shedding more light on parents that live with both Autism and the Autism Spectrum on a daily basis. To weave together an anthology of stories that share the tragedy and triumph of daily life in both a raw and clever ways ultimately swayed me. Overall, I’m not shy about being a proponent and advocate for my son and the Autism Spectrum. I find that every effort a parent or family touched by autism only makes it more plausible for folks to understand and help the momentum of passing needed legislation to assist families tackling high expenses in conjunction with therapy and other needs.

From Joe’s Blog: The Miles Alfonso Dimino Blog: The Future for Miles

Miles has been going to the doctor a bit more this year and he’s really taking a shine to it. In fact, he has been telling us lately that he wants to be a doctor when he grows up. On a recent trip to the doctor’s office, he was ecstatic to get a pic with one of his doctors. Enjoy …

You can buy a copy of My Baby Rides the Short Bus by clicking the link!

Three new laws to help people with disabilities

August 3, 2010 in Special Needs News by Admin Dawn

The 20th anniversary of the Americans with Disabilities Act was celebrated last week as we marked the progress we have made in two decades toward equal rights and full inclusion of people with disabilities in community life.

In New Hampshire, we not only looked back at our accomplishments but moved several steps forward, thanks to the work of the governor and Legislature, and of hundreds of tireless advocates.

Even as we celebrated the ADA’s anniversary, the governor signed into law three bills that protect the rights of people with disabilities. The new laws limit the use of restraint of children in schools and treatment centers, and they make hearing aids and treatment for autism more affordable.

via Three new laws to help people with disabilities – NashuaTelegraph.com.

The overrepresentation of African American students in special education

July 23, 2010 in Special Needs News by Admin Dawn

Since the inception of special education in 1975, advocates have been fighting for the fair and equal treatment of students with disabilities. While some wanted these students to receive an educational experience that was comparable to their non-disabled peers, others, such as Lloyd Dunn, wanted to ensure that all students with disabilities: were treated equitably; received disability labels that were non-discriminatory; and were educated in general education versus special education classrooms- a placement where the curriculum was often described as substandard and incapable prepping students for any creditable post-secondary opportunity.

read more at The overrepresentation of African American students in special education.

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