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A Day Without Lawyers

June 18, 2012 in Featured, Yes, I Am a Special Needs Parent… by Robert Rummel-Hudson

A few months ago, I wrote about the legal fight going on between the innovators of Speak for Yourself, a augmentative speech app for the iPad, and the Prentke Romich Company and Semantic (“The Iceman Cometh, with his Legal Team”). I quickly described the situation at the time like this:

Okay, let’s wander into the weeds for just a moment. Last year an AAC app called Speak for Yourself was released that got the attention of a lot of us because of its use of the LAMP (language acquisition motor planning) concept. This focuses on a core vocabulary using consistent motor patterns that do not change. It is the basis of successful language systems like MinSpeak, licensed by the intellectual property company Semantic Compaction Systems for use in devices produced by the Prentke Romich Company, under the brand name Unity. It is these two affiliated companies, Semantic Compaction and PRC, that are attempting to sue the aforementioned pants off the developers of Speak for Yourself.

Well, things have changed a bit. Despite the fact that the parties have yet to have their day in court, Apple has pulled Speak for Yourself from the iTunes App Store. (PRC released a statement that begins with “Last week Prentke Romich Company (PRC) learned that Apple removed a language assistance app from its iTunes® store pending the outcome of a patent infringement lawsuit filed against the company that developed the iPad® app…”, but a careful read of the legal documents shows that Apple made this move at their request. Weasel words. Gotta love ‘em.) If you don’t already have Speak for Yourself on your iPad, you are out of luck, at least for the time being. If you do, you won’t be able to receive updates or remote fixes, and when Apple upgrades the operating system for the iPad later this year, there’s no guarantee the app will still work at all.

This is obviously a concern for users who are using the iPad and Speak for Yourself as their primary mode of verbal communication. Including, as of this summer, my daughter Schuyler.

There has been a great deal written about this situation. If you’re interested, the first, best place to go is this blog post by Dana Nieder, “The Silencing of Maya”. Dana has been the go-to person on this story, and she’s compiled a comprehensive list of links to the story as well. If you want to know more about this, that’s where you should go.

Now for my take on this, for whatever it might be worth.

There has been a great deal of discussion as to the validity of PRC’s claims against Speak for Yourself, and in a sense, it makes sense for everyone, particularly PRC and Apple, to let a court of law settle those claims. In a very real sense, however, that outcome is ultimately of limited relevance. As things stand right now, everyone loses.

Speak for Yourself loses because their product and their company dies if no one can buy it. Their clients obviously lose a tool that works, and that is very much not a small thing. Apple probably doesn’t lose, to be honest. We tend to think of the iPad as a major component in the disability world, but it’s easy to forget that the opposite probably doesn’t hold true. Apple probably sells more iPads in countries that don’t even have electricity than they do to users with disabilities. Our poor opinion of their business practices isn’t keeping Apple executives up late at night.

But most of all, PRC loses. They can win this court case, they can squash Speak for Yourself and get everything they seek in this situation, but the fact remains that with every story that runs in Time and on CNN and the Huffington Post, they are introduced to thousands of people who know nothing about their good work or their mission statement or their hundreds of dedicated professional employees. No, PRC is being introduced to thousands of people who will now and forever more know them only as “the big corporation that screwed over that poor cute little disabled girl”. That’s the kind of thing that leaves a mark. We can (and will) continue to argue about how accurate that public perception may be, but it’s irrelevant.

It’s irrelevant, and I suspect PRC knows it. I think they might have painted themselves into a corner, trapped by their own poor PR decisions, and they don’t know how to get out of it.

There is a way out, for everyone. The parties involved can take a step back and consider how they might come together and join forces. Under the auspices of PRC and the community of Unity users, Speak for Yourself and its developers would discover a credibility and a world of users that they would be unlikely to achieve on their own. PRC would finally be able to repair some of the public relations damage they’ve sustained and would grow their family. They would solve the very real technical problems involved with breaking into the consumer electronics market without a great deal of development skill. That’s no small consideration for PRC; frankly, their early efforts with iPad app programming has bordered on embarrassing. On their own, I don’t think PRC could release a solid MinSpeak app any time soon even if they wanted to. And perhaps most of all, PRC would benefit from a kind of evolution of their language system. One of the things I’ve been hearing expressed quietly here and there, and it’s something I agree with, is that in its use of a single representative symbol configuration, Speak for Yourself probably represents an improvement on Unity. PRC has a chance to benefit here, if they can work out a collaboration or even a merger with Speak for Yourself.

Will this happen? Frankly, I doubt it. Speak for Yourself’s team seems committed to fighting this fight, and rightly so, and PRC is showing no sign of backing down. But if all the parties involved could just get together in the same room for a Day Without Lawyers, this whole horrible state of affairs might just have an ending that doesn’t leave anyone feeling taken advantage of. Kids like Maya and Schuyler least of all.

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Be sure to check out Quinnlin’s journey with special needs and a special friend at Build-A-Bear Workshop‘s blog!

Welcome to the Club

December 5, 2011 in Community Wisdom, Featured by Robert Rummel-Hudson

One of the constants I’ve experienced since I began blogging about life with Schuyler and her monster, particularly since the publication of my book, has been the receipt of emails from parents who are recent inductees into the world of disability.  Specifically, I hear from many parents whose children have been diagnosed with some form of polymicrogyria (PMG).  They go to the internet with their fear and their shock, and after they read through the “scary boo” and the “what does this stuff even mean?” and the “here’s your worst case scenario, now go crap your pants with fear” pages, at some point they find my book, or my blog.  Or they simply find Schuyler, who is a better representative and a finer beacon of hope than I could ever be, even if I were trying to be either, which I certainly am not.

All these years later, I can clearly remember the day of Schuyler’s diagnosis.  It was the summer of 2003; she was three years old.  I remember sitting in the dark in Schuyler’s pediatrician’s office at Yale, listening to her neurologist describe this thing, this malformation in my sweet little girl’s brain, so monstrous and dangerous and real and visible.  There it was on the light board.  We were looking at it.

“I know when you get home, the first thing you’re going to do is go online and look this up,” the neurologist said.  ”I just want you to be ready.  It’s going to be pretty rough.”

It was, too.  It was rough because the very little information that we found was very clinical and of course listed the total spread of ominous possibilities.  Polymicrogyria wasn’t just a developmental issue.  Schuyler’s brain wasn’t just mysterious or neurologically diverse or wired differently.  PMG described a brain that was broken, a brain that in which specific areas were malformed, where specific and vital functions were impaired or nonfunctional.  We went from theories and even a PDD-NOS misdiagnosis to an MRI photograph.  Schuyler’s monster had a name, and it had an unsmiling face looking back at us.

That’s what the internet gave us when we went looking for polymicrogyria.  A few months later, someone searching for information on PMG might find, among all the implacable medicalese, my online journal.  It had almost no useful information.  It simply expressed the anxiety and the frustration of having this label and this fixture pinned onto the little girl whom I loved with my whole heart.  A year or two later, that new PMG parent’s Google search would turn up online support groups and mailing lists for families of kids with neurological disorders closely related, like polymicrogyia and lissencephaly and microcephaly.  A few years later, they might find an article about Schuyler in connection to my book.  They might also find dates and locations for conferences, opportunities to speak to doctors and specialists and fancy pants authors.  And, most dear of all, chances to meet other families like theirs.

Communities develop like this.  They grow organically, like tiny fish who find each other and begin to school together, sensing that there is safety in numbers and that fear grows most energetically in darkness and solitude.  Individuals find similar others, and we cluster into groups, and those groups grow into tribes.  Mostly leaderless, and usually without an agenda, at least not one that is much more complicated than just “Oh my god, I thought we were the only ones…”, but strong in their common cause, the deepest cause that a parent can hold dear.

I hear from these parents, the ones who have been pulled into our little club without so much as a membership ceremony or a secret handshake.  I try to give them my own perspective, with the caveat that it is mine and mine alone.

It has been eight years since Schuyler was diagnosed with congenital bilateral perisylvian syndrome, long enough that the disorder has actually undergone a name change, to bilateral perisylvian polymicrogyria.  In those years, I tell new parents, I’ve seen how strong community can be, how much strength it can provide to families with questions and anxieties, and occasionally how much comfort it can give those who have endured the unthinkable loss of their kids.  I’ve gotten to watch and participate as two pretty distinct communities of Schuyler’s, the neurological disorders community and the assistive technology community, have grown and developed and served their citizens.

I tell these new parents that I’ve seen failures, too.  I’ve watched as some of these disability community tribes have tried to exclusively possess their causes, and have turned on others and even on themselves.  I’ve watched adults with disabilities be ignored because their agendas don’t fit easily with the concepts of professionals and parents and educators.  I’ve watched as parents are perhaps predictably minimized and ignored by teachers and by medical professionals, but I’ve also seen us demonized, belittled and silenced by members of communities with who we might have been natural allies.  We’ve been accused of stifling the perspectives of others even as we have been systematically silenced and disregarded through the use of language politics, a kind of “ableist bingo” where anything we say is identified as poisonous privilege and then casually disregarded.  “When you say X, what you mean is Y.”  I’ve seen disability advocacy groups strive so hard to position themselves as authoritative and to seize control of some metaphorical megaphone that they no longer primarily serve a larger disability community so much as their own brand.  I’ve watched as advocates for more well-heeled tribes suck the oxygen from the room and then chide the rest of us for gasping too loudly.  I’ve watched disability-related communities eat themselves, saving the outside world much of the trouble.

The disability community is fraught with dissent, I tell my new fellow club members.  And while that should be fine, it often isn’t.  I warn them that it’s an ugly world they’ve landed on, and only most of the monsters they’ll be fighting will come from outside the castle walls.

There is some advice I would give to anyone who is new to the world of disability, whether it is a parent whose child just received that diagnosis, or a young person whose lifelong questions have suddenly been accompanied by a new label, or a teacher suddenly faced with a student for whom none of their training or experience is adequate.

I would tell them that yes, they should strive for a larger global community, one that can affect real societal and political change.  They should put their energy into those causes.  They should put their sweat and their muscle into shaping the world to create a space for their children and their students and their very own selves.

But I would also tell them that most of all, they should very carefully save their hearts for their tribes, for the friends they’ve made along the way, for the families they’ve met and the good teachers they’ve found and the medical professionals who have truly understood how to reach their children and themselves.  And for parents most of all, they should pour their hearts into the work they do for their children, and should let that heart work build a path to a future that is more than just independent, but one that is full of real relationships and happiness, free of bitterness.

It is from these heart tribes that authentic community can grow.  It is from these places of commonality, not from opportunism or vindictiveness or “I got mine, now you go get yours”.  It’s easy to confuse building walls for building worlds.  But you’ll know the difference.

Fears and Raising Children with Special Needs

October 26, 2011 in Featured, From Julia by Julia Roberts

When we are sharing here on Support for Special Needs about the unique challenges of raising kids that have differences there’s always someone to offer a different perspective. In doing so they make you think about how grateful you are there is someone who truly understands.

We all have different perspectives (obviously) on what to focus on, what motivates us to keep going each day (when the day kicks us in the teeth) and in what way we present our stories (public or private, positive or negative). We all have fears. Some of us share our fears; some have them but are afraid to share them.

During my son’s battle with kidney failure, a botched surgery, kidney transplant, and subsequent frightening depression I had many fears for his safety, for his general well-being, for his life. I didn’t voice my fears about him dying very often and I tried to shut them away during the period of time he was suffering but it was an underlying tone for me. My husband wasn’t able to voice it, think about it, or hear me talk about it either. It was a hard time to have those fears.

Some fears that I and other community members have…

  • -          Financial security, for us now and our children in the future. Keeping insurance, hitting maximums before our kids are 5 or 10 and the many out-of-pocket costs of taking care of kids with special needs. Many of us are  discussing  special needs trusts before our kids are five.
    -          Independence into adulthood. We want our kids to have as much independence as they are able to gain. We worry for their safety and happiness.
    -          Bullying. We worry our kids that their developmental, physical or mental challenges will be the target of bullies. For me, this started at kindergarten and continues…
    -          Change. For some of our kids change can be extremely difficult to navigate. Early on we learn that they don’t like natural transitions in the world and we grow to fear it because adjustments are difficult. For parents, sometimes change means a progression in a disease symptom, medication, treatment, or arrangement. Sometimes we fear it. Greatly.
    -          Acceptance. Tied to bullying of course, but acceptance is huge worry for many of us. We want our kids to grow up being able to experience typical things everyone wants to enjoy…friendships, inclusion in social events, feeling welcome in new  groups of people, sleepovers. Acceptance.
    -          Education. We want what is our child’s right. Reasonable access to education. We want a compassionate education team, we want services that will help them, appropriate classroom settings and people to treat us parents/caregivers as part of the team. We want everyone to help our kids reach their potential. Period.
    -          Abandonment. Sadly, the acceptance item on this list extends even to people who love us. Our kids aren’t “perfect” and some come with a lot of management; behavior issues and plans, problems with eating, dressing, toileting and speaking. We want the people who love us to try to understand that we’re doing our best and we don’t want you to abandon us because it gets rough. It gets rough a lot.
    -          Relationships. Fearing change in relationships because of the relentless needs. Along with that I fear losing myself. Period.

Community member, Michelle Howard said, “I hate the word fear. It has too much power over people.” While fear can permeate my subconscious it doesn’t rule my life. For me and most of the parents of special needs kids I have contact with letting fear rule us would mean that we have to pull energy from the job of managing the special needs our kids have and our time is too precious.

I’ve learned to live with fear. It’s something the forces me to grasp my reality and it’s sometimes what propels me to seek out and appreciate the joys.

Originally published in January 2011

Avatar of Beth

by Beth

Down Syndrome Awareness Day

October 3, 2011 in Featured, Featured Member by Beth

This post, by community member, Beth, originally ran this past March for Trisomy Awareness and World Down Syndrome Day. Given that it’s National Down Syndrome Awareness Month we decided to run it again.

————

What Trisomy Awareness Month means is each Trisomy gets its own day to raise awareness. For example, my daughter Lauren has Down syndrome. She has 3 copies of the 21st chromosome, so our day to celebrate and raise awareness is March 21 (3-21). My friend Marta has a 9 year old son who has Trisomy 18. Their day is 3-18.

According to Wikipedia, trisomy is where there are 3 copies of a certain chromosome instead of the usual 2. There are several different types of trisomy. The most common type is Down syndrome (Trisomy 21). The other five types are rarer. Kayden, Marta’s son has Edwards syndrome (Trisomy 18). There are trisomies that occur on the 8th, 9th, 13th, and 22nd chromosomes also.

Because Down syndrome is the most common, it also has the most awareness (but still not enough). We have Buddy Walks, World Down Syndrome Day (March 21), National Down Syndrome Awareness Month.

Lauren was born in 2007, during a blizzard. She was a week early due to my blood pressure, and I needed an emergency c-section. She was 6lbs. and so tiny. She got jaundice, wouldn’t drink water (she still doesn’t!) I was told she would never breastfeed because she “is Downs”.

I started really advocating for her when she was 6 months old. We started early intervention; I started planning our first Buddy Walk for our community. I tried to find other moms online, since the moms around our community really wanted nothing to do with us.

I learned so much about Down syndrome such as the proper terminology. Lauren has Down syndrome. She is not Downs. Also, it is Down syndrome, not Downs, Down’s. Big D, little s. It was named for the doctor who first discovered the features of Down syndrome. I really despise when Lauren is called a Downs kid, or a downie. I always try to explain that by saying you wouldn’t call a woman with breast cancer ‘the cancer lady’. That would be rude.

My name is Beth and I blog at Our Typical Life. I talk about everything from Down syndrome to taking pictures. Lauren is 3 and has Down syndrome. Avery is one and the biggest copy-cat ever. I’ve been married for nearly four years and we live in Minnesota.

 

My Great Story Campaign for Mother’s Day

May 8, 2011 in Featured, Featured Group, From Julia by Julia Roberts

A Forum to Share Her Story

NDSS & The My Great Story Campaign join together to raise awareness for Down syndrome in celebration of Mother’s Day.

Today, Mother’s Day 2011, the National Down Syndrome Society (NDSS) will celebrate the accomplishments and achievements being made by people with Down syndrome by honoring their mothers. The My Great Story (MGS) public awareness campaign seeks to ignite a new way of thinking about people with Down syndrome by collecting inspirational stories told by people with Down syndrome and their family members, friends, colleagues, and many others. NDSS has added a new section in honor of Mother’s Day. Participants share a story about their mothers, grandmothers, sisters, aunts, cousins or friends who have a son or daughter with Down syndrome. Anyone can comment or vote on the stories already in the collection. NDSS invites you to cover the MGS campaign, post, tweet and blog about it, and promote reposting, retweeting and more sharing amongst your audience.

NDSS also invites you to watch the two MGS Celebrity PSAsthat star TV Hosts Meredith Vieira and Nancy O’Dell and post them to your media outlet’s website. Vieira’s dedication to the MGS campaign stems from her relationship with her son, who has worked as a camp counselor for people with Down syndrome, and O’Dell was drawn to campaign through her fond memories of her mother’s sister, who had Down syndrome. Both Vieira and O’Dell have also submitted stories to the campaign that speak to their experiences.

Down syndrome is the most commonly occurring genetic condition, in which the individual has a third copy of the twenty-first chromosome. One in every 691live births is a baby born with Down syndrome, and it is the most commonly occurring chromosomal condition. People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.

People with Down syndrome are living longer than ever before. The life expectancy of individuals with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today. Children with Down syndrome are often fully included in social and educational settings and increasingly go on to graduate high school and attend postsecondary education programs. While placement in the workforce remains a struggle, the situation has improved and adults with Down syndrome have attained a variety of positions, bringing enthusiasm, reliability and dedication to their jobs.

We encourage you to get involved and help NDSS and mothers of people with Down syndrome everywhere to raise awareness for people with Down syndrome.

About My Great Story

MGS was created pro-bono by NY based Ad Agency, Pedone. After 14 months of market analysis the Pedone team developed a campaign in an effort to shape the future for all people with Down syndrome. The online story book was developed by CT based Interactive Agency York and Chapel, who spent over 12 months developing the user friendly technology, sophisticated design and esthetics, and incorporation of the spectacular print ads shot by Zachary Scott. To date, over $5 million has been donated in national and regional ad space and services. The campaign has been seen by over 175 million people across the country and featured in media outlets such as Allure, Fortune, Golf Digest, The New Yorker, Newsweek, Time, Vogue and Wired, among other noteworthy outlets. To learn more, visit www.ndss.org/stories

About NDSS

The National Down Syndrome Society is a nonprofit organization representing the more than 400,000 Americans with Down syndrome. The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity enhance their quality of life, realize their life aspirations, and become valued members of welcoming community. NDSS has over 350 affiliates nationwide. To learn more, visit www.ndss.org.

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!

 

What’s happening around the community

March 4, 2011 in Around the Site, Featured by Admin Dawn

Remember tomorrow is our first ever In Real Life event but it won’t be our last! Our goal is to give you opportunities to build your support network on AND off-site. We are working on more events for laster this year so stay tuned!

March & April Book Club Book

We’re very proud to announce that we’ve chosen site member Suzanne Kamata‘s anthology Love You to Pieces: Creative Writers on Raising a Child with Special Needs.

The first collection of literary writing on raising a child with special needs, Love You to Pieces features caregivers’ perspectives at every stage in the lives of children with mental or physical difficulties, from premature birth to middle age. In this rich blend of short stories, essays, and poems, families cope with autism, deafness, muscular dystrophy, Down syndrome, other forms of retardation, and more, laying bare the moments of rage, disappointment, and guilt that can color their relationships. Parent-child communication can be a challenge at the best of times,b ut here we see the epic struggles and triumphs of those who speak their own language – or don’t speak at all – and those who love them dearly. Together, the authors paint a beautiful, wrenchingly honest portrait of what it means to care for a child who does not experience the world as we do.

We hope you will join us!

Welcome to our New Members

Aubrey L.: “I have a support group for others affected by premature birth (I was born three months premature) called www.precious-miracles.org as well as special needs (I work as a Care Aide within a school district). I want my website to be a place of support, encouraging words, a listening ear, a shoulder to lean on. Please visit my site to find out all the interesting offerings it has!”

Danielle: “I work in special education and am the proud mother of a child with special needs!”

Heather: “My daughter is 5 1/2 years old, and was diagnosed with CP around 10 months. It has been a long road and just intersted in meeting others with simillar life stories.”

Beth: “I am the very happy mom and 2 boys! Matthew is two and perfectly happy, healthy! Grant is going to be 1 in March and he is perfectly happy and for the most part healthy besides his CP he has! He is doing great and accomplishing so much! These boys bring so much joy to my life!”

Pat Boyle England: “Advocating for kids” and who blogs at septanorthbellmore.blogspot.com

Chaney who blogs at Here’s My Voice

Ann Rounseville: “I am currently a stay at home mom of an adorable 3.5 year old little boy who is diagnosed with PDD-NOS, Global Developmental Delay and Hypotonia. He is non-verbal but has the best belly laugh in the world! I am also expecting a baby in May. Life with our little guy has not been easy and I find meeting other parents of kids with special needs to be so very helpful and important!”

Jaymi Griesmeyer: “I am the mother of three amazing children. My oldest is 7, he is gifted and has generalized anxiety disorder. My second son is 6 and was born with a congenital heart defect and had open heart surgery when he was 5 days old. My youngest is a 3 year old girl who has epilepsy and developmental delays.”

Ginger Adams

Tisha Libbey: “i have a 5 yr old daughter with CP. she is legally blind, has a VP shunt and a G tube for all meals”

Kristy Allen: “Mom of son with developmental delay.”

Jenny: “I have mild Autism. I may even be Aspergers but I dunno. I have a little brother with sever Autism. I’m also a Christian. I’m a greatful believer and follower of Jesus Christ.” Jenny blogs at The World of Mismatched Socks

Deanne Webber: “I am the mom of 2 incredible children”

Have you added your blog yet?

There are lots of ways to help us discover your blog or website:

• You can add your blog feed to our site. Every time you update, we will pull in an excerpt and post it to our Blogging Our Lives Group. It will also show up in our activity feed that updates here and on our front page.

• You can add your blog address to your signature file on your profile.

• Next time you write a great blog post let us all know about it by sharing it as Community News. It will update to the Community News page and go out on our Twitter stream.

 

Around the Community

February 18, 2011 in Featured by Admin Dawn

Have you voted for us yet?

Your nominations have been tallied, and five online communities have been selected to vie for a 2011 About.com Readers’ Choice Award. Before you go to the poll, you may want to take a moment to read more about each of the candidates, and review the Readers’ Choice Award FAQ for more information on the awards. You can vote once a day for as many days as you like between now and March 8. Winners will be announced on March 15.

You can vote for us every day until March 8th! Just enter your vote here: Vote for Best Special-Needs Online Community

Remember: Our Valentine What’s in a Name Giveaway is open until midnight PST tonight, February 18th!

Check it out here and then be sure to enter!

Share Your Celebrations

We’ve removed the Achievements plugin that people found confusing and instead we’re going to start featuring your family’s TRUE achievements! Has your child done his homework every single night this week without complaining? Did your daughter wow her physical therapist? Did you reach your own personal goal? We want to know! On the sidebar of our blog posts (see it over there to the left?) we’ve put up a form that lets you submit an entry for our blog under the new Celebrations! category. Once you submit and we approve it it’ll go out to let us all know your good news.

Don’t hold back!

We want to celebrate each other! This is different than our Community News feature. Community News is for news. A great blog post, an event you want us all to know about, something your local newspaper’s web site is featuring. But Celebrate! is for our personal victories. When we start getting submissions we’ll add a Celebrate! link to our navigation menu up there at the top of our site.

Welcome to New Members

Jeni

LoraI am a single mom of a wonderful 5 year old little girl. Jamie has Cerebral Palsy. She was officially diagnosed when she was 1 an half. She has had seizures since day one. In her short but sweet 5 years so far she has had seizures, CVI, lazy eye, dislocated hip, hip surgery(which didn’t work), Sensory disorders, a type of asthma, two brain haemorrhage’s at birth, severe allergies to food drugs and environmental and so much more that I can not begin to think of right off hand. My daughter is my angel. She is such a happy child. She loves the outdoors. She always seems to have a smile on her face no matter what. She hopefully will begin school this fall. I am excited but ever so nervous. As she will be going during the flu season and she can’t have the flu shot. Anyways, to wrap things up I try to do the best that I can for my baby girl and I love her ever so much.

Sue Robinson – Son slowly being diagnosed with Sensory Processing Disorder. Just turned 4 and has been having more of a difficult time. I am trying my best to learn more, be patient, but seem to be losing my cool more often than not.

Vanessa Infanzon – Mom to three boys, wife to husband of 13 years. Our oldest son has a thin corpus callosum and another undefined genetic disorder. He uses a walker to get around and does not talk. I stay at home for now, but look forward to writing more as the kids get older. I also facilitate team building and leadership activities for college age students.

Martin Frantz – For 32 years, I was a career prosecutor where I vigorously defended vulnerable populations like child victims of sexual assault. I retired and started a law practice helping families with special needs children. I was inspired by my son who was born 18 years ago with Down syndrome. As my son approached adulthood, I wrestled with tax laws and state regulations for disabled children. That’s when I decided to put what I learned together with my passion for helping kids.
I provide estate planning that will conserve assets and minimize taxes while maximizing the potential for your disabled son or daughter.

Amy Moss

Christy – I am a mother of 3–a boy and 2 girls. We’ve been on the “journey” since my son was 1 1/2, but he was officially diagnosed with “mild Asperger’s Syndrome” around age 8. He is now 12.

Lisa Noel – Blogger and fulltime working mom of three boys, two of which are dx’d and treated for ADHD.

Gina Gareau-ClarkI have adorable twin daughters with mitochondrial disease, and still testing for other diagnoses. I am the Executive Program Director for the Dare To Hope Foundation, contributor to the Children’s rare Disease Network, and a member of Parent to Parent’s Cobb Navigator Team. I run a small cake decorating business out of my house, http://www.twintierscakery.com

Annette Kay Fortner – I am a mother who has 2 young kids, boy (11) who has ADHD and an Auditory Processing Disorder, and a girl (6) who has developmental delays and has been in therapy for those since she was 9 mos. and that ended, but is continuing because of her motor difficulties. She also has a speech delay. My husband is in the navy and has been in for 19 years now and will soon be retiring. We are young..34 for me and 39 for him. It is very hard dealing with special needs kids and no one understands, so I am here for support.

christine – I’m 31 with 3 kids

coleen shiffert – I am 28 years old and a mother of 6 beautiful children. My 5 year old daughter Shelby was diagnosed with developmental delays and intellectual disabilities when she was about 1-2 years old. She also has failure to thrive (she has a g-tube), Kidney reflux, heart murmurs, growth hormone disorder (at 5 she only weighs 25 pounds), and hypothyroidism. My daughter is my hero for all the obstacles she has overcome and for all the strength she has. I have a wonderful and supportive family who keep me going even when i don’t think i can go on. I am truly blessed!

Rachel

Stephanie

Anne Zachry – I am a pediatric occupational therapist with over 18 years experience providing occupational therapy to children, along with caregiver instruction and support. I have a PhD in Educational Psychology. I’ve had articles published in my profession’s trade magazine and in peer-reviewed journals. I am currently employed as a school OT in Tennessee, working with students having issues ranging from mild fine motor problems to severe physical disabilities. I am certified to administer the Sensory Int System.

Have a blog?

Be sure to send me your link so I can add your feed to our activity stream! That way we can all keep up with your blog posts. Just send it to dawn@supportforspecialneeds.com

Parent Labels

February 16, 2011 in Featured, From Julia by Julia Roberts

Robert Rummel-Hudson (You know him, Author of Schuyler’s Monster: A Father’s Journey with His Wordless Daughter), proud dad to Schuyler, had a post yesterday about a conversation that started because he shared that a music teacher was telling parents they couldn’t attend a demonstration at the middle school Schuyler would be attending. He then sent a note, then she sent a note and well, it felt wrong to him.

Someone made a comment on his Facebook update about hover/helicopter parents and he explains in this post his feeling about it and it hit a nerve with me. I am what could be (and probably have been) called a hover/helicopter parent. He much more eloquently communicates why it’s insulting for people to say this to parents of special needs kids.

He’s claimed this as his one thing NOT to say to parent like us:

The term “helicopter parents” is meaningless, inappropriate and insulting to parents of kids with disabilities. Don’t say it to us. Don’t even think it about us. Save it for Toddlers & Tiaras.”

I’m not going to say anything different really than he shared in that post except to say that in my experience it pays to assume your child is the exception to the rule – as Rob and his wife, Julie often do. It’s mandatory that we go through life doing so in order to make sure our kids are protected, cared for, educated and in environments that help them flourish. If we don’t monitor the people and experiences they are supposed to have to reach their potential – whatever is it – who will?

I can tell you that I treat the kids’ education teams with respect and I expect the same. I can tell you that I expect them to work with me to find ways to reach my hard-to-teach children. No teacher who has the child’s best interest at heart considers over involvement a bad thing. Good teachers welcome us with open minds, hoping to find a nugget of information that will unlock something that is hidden in our kids.

We are the exception to the rule. Very nearly the entire world makes my kids the exception to the rule by placing expectations and standards of “normal” they can’t meet, they are treated differently by family, by friends, by wide groups of people who will never be friends. They are singled out as different and tested and monitored every single day of their lives.

I don’t mind saying we have to do things differently – like we’re the exception to the rule – in order for my kids to have half a chance. I’m so glad to be in a community here that know what this is like.

Please vote for us!!

February 15, 2011 in Around the Site, Featured by Admin Dawn

Terri Mauro of About.com’s Special Needs Children channel is hosting a best special needs resources contest and we are up for an award! We have only been around for about nine months and change and it is so exciting to already be getting recognition!!! We thank all of YOU because it is our community members who make us great!!!

You can vote for us daily by clicking here. The contest runs until March 8th and you can vote every single day. It would be so great if you would! The recognition is already bringing new members to our site, which is so exciting. We love seeing new registrations roll in! The more we share the greater our power!

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