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Sometimes Funny is All We’ve Got

August 3, 2011 in Featured, From Julia by Julia Roberts

When our first child was diagnosed with  developmental delays we didn’t know what hit us. We’d gone from having a perfectly healthy 8 month only child to one that was in 7 therapy appointments and “at risk” as defined by the state’s early intervention program.

Those were not fun times. While we were still acting as a regular family, we were focusing on getting used to our new normal. Which turned out to be not very easy. It did happen eventually and we were happy again.

But we didn’t know what we didn’t know.

A little over a year later we were faced with our new baby’s diagnosis of a life-threatening kidney disease and 3 months later our son’s diagnosis came. It was not a happy time in our house. In fact, I clearly remember doing anything but laughing or having fun…for a very long time.

That was the year I refer to as “The Fog” and I remember it well. Back then, before I was blogging at Kidneys and Eyes to release some of the pain and hurt and experience, I would send out batch emails to close family and friends to give them updates. Those emails were excruciating to send because I didn’t want to sound too depressing, but honestly? Things were depressing around our house. We were still getting our special needs parents legs firmly planted on the ground. So while I was kind of pretending to be okay, things became okay. It was a “fake it til you make it” kind of thing.

During that time my beloved and I would test out our funny bone on each other. We’d say something totally inappropriate outside the walls of our brick ranch home and slowly but surely we started to believe. We started to believe in humor again. It didn’t happen all at once; it slowly crept back into our lives.

Over the years as we cried about the progressing symptoms of kidney failure, developmental delays and bad reports all around us, we learned that we could laugh. I remember the night when I got a call on my cellphone telling me it was time to get our son in to talk about a kidney transplant; his lab numbers had taken a turn for the worse and stayed there. When I got home my husband took one look at me and he knew something was wrong.

The kids were eating dinner at the kitchen counter and while I was crying they were screaming for milk (or goldfish or yogurt) and we were both trying to hid our tears. I am fairly certain I sighed heavily and rolled my eyes because the kids have the audacity to ask for more to eat or drink and I said something like, “Ugh! We can’t even talk for one minute about dialysis and kidney failure!” My husband looked up at me and said, “What, don’t you think mortality and milk mix well?”

I agree, it’s not THAT funny, but it did come at a good time. We talked about how life just keeps moving on; the kids still have to eat. So, we just moved on through two kidney transplants (mixed in with dialysis, depression, mental health issues and trauma) and here we are, trying to get ready for the next crisis (which we know will always come).

Sometimes we make fun of our life and our kids to left off steam. Sometimes it’s because we need a laugh. Sometimes it is because some of the things they do because of their disabilities are really funny. Sometimes it is because if we didn’t we would cry.

I like to make fun of what we say and I chronicle it on my blog by titling certain posts with “Spoken in the Mutant Family Household” because it’s my way of embracing our inner (inappropriate) funniness (Sometimes about the kids! And their disease!) and our outward mutantness.

There’s hardly a better way to live this life than to laugh at it and that includes laughing with (and at) my mutant children. I have to admit some days it is the only way we can live this life.

Does humor get your through the day sometimes?

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.

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.”

Autism Therapy Beginning at 6 Months

November 10, 2010 in Special Needs News by Admin Dawn

In the three years since her son Diego was given a diagnosis of autism at age 2, Carmen Aguilar has made countless contributions to research on this perplexing disorder.

She has donated all manner of biological samples and agreed to keep journals of everything she’s eaten, inhaled or rubbed on her skin. Researchers attended the birth of her second son, Emilio, looking on as she pushed, leaving with Tupperware containers full of tissue samples, the placenta and the baby’s first stool.

Now the family is in yet another study, part of an effort by a network of scientists across North America to look for signs of autism as early as 6 months. (Now, the condition cannot be diagnosed reliably before age 2.) And here at the MIND Institute at the University of California Davis Medical Center, researchers are watching babies like Emilio in a pioneering effort to determine whether they can benefit from specific treatments.

via Autism Therapy Beginning at 6 Months – NYTimes.com.

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Training Baby Sitters for Children With Special Needs

November 9, 2010 in Special Needs News by Admin Dawn

On Thursdays, Ms. Choi can feel reliably confident that her husband will not come home to find her tense and exhausted. By bedtime, both of her children will have eaten dinner and been bathed. The 3-year-old, Spencer, who has a speech delay and a developmental disorder, will not have walked around the living room in self-soothing circles the moment she turned her attention elsewhere. Her 6-year-old, Logan, who has attention deficit hyperactivity disorder, will have finished his homework.

Thursday is the best day because that is the day Catalina Lopez — cheerful, well trained and all of 17 years old — comes to watch Spencer and Logan, each for an hour, separately, and peace descends on the family’s two-bedroom apartment in western Queens. Competent, reliable baby sitters are closely guarded treasures for most parents; for families who have children with special needs (but who do not qualify for state-supported respite care), such baby sitters may exist only in the realm of fantasy. Those who need a break the most, then, are often the least able to find someone they trust to provide it.

via Training Baby Sitters for Children With Special Needs – NYTimes.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.”

A sister’s love for a brother with Down Syndrome

November 3, 2010 in Special Needs News by Admin Dawn

Heidi Schlicher was 8 years old when her brother Matt was born on Christmas Eve 1991. She returned home from her grandparents’ excited to meet the new baby and was puzzled to see looks of concern on her parents’ faces.

Her mother said that the nurses who had aided in the delivery suspected her brother had Down Syndrome, and explained that it meant that Matt would take longer to learn than other children.

Over time, fueled by her brother’s unconditional love, Schlicher became a passionate advocate for a variety of organizations that serve special-needs people.

That passion led her and more than 60 others to the rooftop of the SunTrust building in downtown Richmond last Saturday. As part of a fund-raising event called “Over the Edge,” each earned the right to rappel the 25-story office building by collecting a minimum of $1,000 for Special Olympics Virginia.

via Midlothian Exchange – Sports: A sister’s love.

A Hero or Just a Parent?

October 22, 2010 in Special Needs News by Admin Dawn

During the discussion here last week about the challenges of parenting a disabled child (“Is It Harder to Have a Child with Down Syndrome?”), I heard from Stacie Lewis. An American living in London, Lewis has an 18-month-old daughter named May, who has severe brain damage, caused by lack of oxygen at birth.

Lewis has been blogging about May since the baby was 4 months old, at Mama Lewis and the Amazing Adventures of the Half-Brained Baby. Often her readers leave comments praising her courage and patience — the same kind of comments that many (though hardly all) Motherlode readers left on the Down syndrome post.

Those sort of comments tick Lewis off. She is not some kind of hero, she says, just a mother who drew an unexpectedly complicated hand. And, as she writes in a guest post today, sometimes she gets more than cranky about it.

Read more here: A Hero or Just a Parent? – NYTimes.com.

The joy of raising a child with Down syndrome

October 18, 2010 in Special Needs News by Admin Dawn

AT 1.21am on May 7, 2004, Sofia burst into our world. A few years later, my elder daughter Gabriella asked me: “Was Sofia born with Down syndrome because you had a cracked egg?”

I immediately thought of the tarot card the Ace of Wands in the Mother Peace deck. An egg cracks open and the sun is born. From the centre of the fire a baby leaps with joy, expressing hope for the future. I thought to myself: “Yes, this is how Sofia entered into the world, with love and in strength, the whole family full of hope, looking towards a future with infinite possibilities.”

It was the labour I had always longed for, completely natural with no medical intervention, just a family with its midwives, giving birth in a homely environment. When you are lucky enough for this to occur it is a great blessing and an incredibly empowering experience.

Read more here: Little Sofia’s journey of the heart.

Baby with Limb Deficiency Inspires Unique Book That Offers Hope to Families

October 15, 2010 in Special Needs News by Admin Dawn

Imagine…Amazing Me, a book featuring simple, yet inspiring photos of children engaged in a variety of activities despite having limb and extremity differences.

Valley View, OH, October 08, 2010 — Amazed by the capabilities of her physically disabled daughter, author Libbi Chilia created Imagine…Amazing Me, ( http://www.imagineamazingme.com ) a book featuring simple, yet inspiring photos of children engaged in a variety of activities despite having limb and extremity differences. This book disbands any misconceptions about people with disabilities. “I feel my book reaches out to all people and teaches about physical diversities,” Chilia said.

Read more here: Baby with Limb Deficiency Inspires Unique Book That Offers Hope to Families | Press Releases @ Your Story.

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