web analytics

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

Welcome to our New Community Members

November 6, 2010 in Around the Site by Admin Dawn

We had a ton of people join our community this week so we wanted to do a quick weekend shout out to them in the order that they registered!

We also wanted to highlight our mission statement this week to make clear that we are an inclusive community and welcome diverse voices!

Special Needs.

It’s an all encompassing label, yet we let a diagnosis divide us among this powerful group of advocates and caregivers into categories of rare and not-so-rare diseases, genetic conditions, developmental delays and the unexplained afflictions. We have more in common than separates us and Support for Special Needs is the community that offers a chance to exchange wisdom and ideas among one of the most powerful group of people we know. Join us as we learn from each other about how to help our kids and ourselves.

Now let’s meet our new members! Click their names to reach their profiles and say hello to them! Ready? Set? GO!

Barbara – “Mother of 9 yr old child with special needs”

Linda

Heather Pierini – “I am the mom to two girls, almost 9 and 3 months.”

Karyn Climans

Jacki – “My daughter has ADD with Cystic Fibrosis and Cerebral Palsy”

Rachelle – “I am the mother to a wonderful most precious angel with special needs. My daughter Alyssa has OPCA (a degenerative brain disease), Cerebral Palsy, Microcephaly, ONH (optic nerve hypoplasia) Infantile Spasms (a form of Seizures), developmental delay (almost 2 and at a 6 month level) and has a G Tube. She is the happiest most beautiful baby girl I know. I was devastated at first but came to realize that God chose me to raise this blessing and I thank him every day for her. I stay strong so that she will stay strong. I used to pray for healing but them realize that in order for God to heal her he would have had to make a mistake when he created her. God does not make mistakes. Now I pray that he will just keep her happy and make her the best she possibly can be. I have my moments when I must cry and morn that child I dreamt of but I never let her see me. I use the shower for that release period. I know that for me to dwell in her short comings would only take away from the time I have her since with her degenerative brain disease I do not know how long God will bless me with her. She was born with 3 rare diagnosis so we say she is extra special 3x’s over. I love her more than anyone could ever know and I would not change her for the world. She is my precious angel.”

Keely Miller – “I am a Mom of 3 children with special designer genes. I have learned that “Variety is the spice of life” and we sure do have a variety of things going on in our family. Our Geneticist is working on finding the main ingredients! My youngest and I have been diagnosed with a duplication on our 13th Chromosome and my other two are in the process of diagnosis with Genetics.”

Lynne McKenzie – “Mum of two beautiful children. The youngest, my son, requires 24hr care.”

Julie

psmadel – “mom of child with EEC Syndrome”

Tanya Lewis

Alicia Harper – “Navy wifey; SAH mommy full-time to 3, part-time to 1; 2 year old son dx hydranencephaly; full-time psychology student; contact for the International Hydranencephaly Group for support/resources/information for families facing dx; and in love with my life!!”

Joy Owens – “I am a mother to a 10 year old boy who is living with a severe congenital heart defect. He has had 8 surgeries in the last 7 years with more in his future. It is a chronic and life threatning illness with no cure. In January of this year our 2 1/2 month old baby boy died because of a severe heart defect. all 72 days were spent in the hospital. We also have a healthy 11 year old boy and 7 year old girl.”

Caroline Callaway

Dan and Amy Stout

AidelMaidel – “I’m the 30something mom to a bunch of kids, including, but not limited by, one teenager on the autism spectrum, one 8 yo with Retinitis Pigmentosa, a visual impairment, ADD, APD, and some neurological impairments, and two more who are (seemingly normal). We’re orthodox Jews who live in NYC. :) I’m happily married and work a full-time, full-stress job.”

Lora Alexander

Nancy Powers – “Adoptive mother of two school-aged sons”

Jenny Fenner

Julie Renner

Cheryl Crisp – “I am the adoptive mother of a child who is medically fragile, ventilator dependent, and has multiple disabilities. In addition, I am the pediatric clinical nurse specialist at a diagnostic clinic for children with a wide variety of special needs including autism, developmental delay, mental handicaps, medical disabilities, and learning disabilities. Working with these children and families is my mission, and I will do anything I can do to help them in any way I can, because I know firsthand what having a child with special needs is like. I consider toys to be a very special type of assistive technology, because the allow children to communicate in a way that they otherwise might not be able.”

Laurie Sweeney – “I am 53 years old, working in a PhD in ED Psych. I have been an adoptive and foster mother for over 30 years. Most of my kids have been some combination of Bipolar, FASD, RAD, ADHD. GB is 7 and her parents’ TPR was approved on 7/28/2010. She will be finalized in a couple of weeks. She has FASD and Bipolar. I have an adult son, J, who is Bipolar and doing very well. I have 2 legally adult children, living at home, MK, who is Bipolar, FASD, EX-RAD and a new mother, and D, who simply isn’t functioning. We successfully adopted a 4 1/2 girl, Hope, on August 26, 2010 from a dissolution who is Bipolar, Rad, and had been diagnosed PPD-NOS (PPD-NOS has been removed). I will be a SAHM for a while, then finish my dissertation.”

%d bloggers like this: