web analytics

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.

How to make it through Spring Break without tearing your hair out

April 4, 2011 in Ask the Behaviorist, Featured, Insider Insight by Holly M. Adams M.Ed.

If spring break is bearing down on you, you might be thinking 5 more days of school and…THEN WHAT. Perhaps you are worried about the vacation to the beach you have planned with your family, or about the “staycation” you are planning. You and your child might even be using the week off to try some new therapies, or have a medical procedure that requires too much time off from school. Well I am here to tell you all of the above scenarios can be completed seamlessly, yes seamlessly, without meltdowns and tantrums using only a few simple tricks.

Trick number 1

Start talking to them about it NOW. Waiting until the weekend of the big trip does not allow your child enough time to process the information you are giving them.

Trick number 2

Peace comes in the details. If you are prepared, they will be prepared. Make sure you have thought through all of the activities you have planned and that you are taking or have access to all the necessary equipment. You have the ability to stop most anxiety outbursts by planning ahead and sharing the details with your child.

Trick number 3

A calendar can be your best friend. Use a weekly calendar with pictures to show your child what to expect each day. A calendar can also help them count down the days until they can return to school and see their friends.

Trick number 4

A stopwatch or a visual timer will help to make foreign transitions easier. There are a variety of timers that a can be downloaded onto almost any smart phone to help with transitions. ( I recommend Time Timer) Often on vacation, you are doing things that highly preferred and are followed by a non preferred activity. i.e. play in the ocean, then shower. A portable timer will help your child anticipate transitions and cut down on meltdowns.

A vacation is meant to be just that, a break from all the stresses of daily routines and structure. You only need to take a few tools from your daily life to make your vacation life fun and relaxing for everyone.

I have provided a social story to read with your child to prepare them. You can download it in PDF format by clicking here.

Hershey’s for the Holidays

December 10, 2010 in Giveaways by Admin Dawn

The Hershey Company has an array of classic and new products that will make holiday 2010 exceptionally sweet. From iconic candy dish favorites such as Hershey’s Kisses Brand Chocolates, to delicious new stocking stuffers and gifts including: NEW Hershey’s Cookies ‘N’ Crème Santas, NEW 1.45 oz Seasonal Hershey’s Kisses Brand Solid Milk Chocolate Santa Hat, NEW Rolo Reindeer Cane and NEW Hershey’s Pot of Gold Truffles Sampler, there’s something from Hershey for every holiday celebration! They’re giving TWO stockings full of holiday delights for us to give away to members who could use some extra sweetness this holiday season! We got a few Secret Santas from the site to help us pick the winners and you can see them on the front page of the site!

Here Comes Santa Claus
Slip on the Santa suit and supply holiday cheer to family and friends with new Hershey candies that will have everyone saying “Ho, ho, ho.” More than 150 million chocolate Santas will be made for the winter holiday season;* try Hershey’s sweet twist on this holiday favorite with new Hershey’s Cookies ‘N’ Crème Santas. Also new is the 1.45 oz Seasonal Hershey’s Kisses Brand Solid Milk Chocolate Santa Hat.  And no good Santa can deliver presents without Vixen and Blitzen – the new Rolo Reindeer Cane is the perfect stocking stuffer from any Jolly Old Saint Nick.
Gift a Pot of Gold
The winter holidays represent the biggest boxed chocolate selling season and more than 70 percent of adults will give or receive a box of chocolates.* Share Hershey’s Pot of Gold Truffles Sampler, one of the new Hershey’s Pot of Gold truffle additions to gift boxes this year. An ideal option for small gifts or stocking stuffers, this treat arrives as a 1.05 oz box with individually wrapped milk chocolate truffles, perfect for sharing at the next holiday gathering.
Meeting Under the Mistletoe?
This December there’s no need to catch someone under the Mistletoe; The Hershey Company makes it easy to celebrate the season with a kiss. Hershey’s Kisses Brand Chocolates are available in a variety of flavors including Milk Chocolate, Milk Chocolate with Almonds, Mint Truffle, Caramel, Special Dark Mildly Sweet Chocolate, Cherry Cordial Crème and Candy Cane Mint. Each variety comes wrapped in festive colored foils, making them the perfect treat for both holiday baking and decorating.

Deck the Halls with Candy Décor, Baking and Crafting
Forty percent of holiday candy is purchased for candy dishes, baking and crafting and Hershey delivers the magic of the season with iconic treats, offering all the right ingredients for tasty recipes and candy crafts. Create a beautiful wreath or decorative tree with Hershey’s Kisses or Reese’s Peanut Butter Cup Miniatures or surprise family and friends with favorite Hershey holiday treats hidden on the bow of a present.  To start creative bells-a-jingling, select from the following products for the ultimate in crafting and baking:
  • Hershey’s Miniatures Assortment
  • York Peppermint Pattie Miniatures
  • Kit Kat Wafer Bar Holiday Miniatures
  • Hershey’s Extra Creamy Milk Chocolate Bells
To view a complete list of Hershey’s holiday baking recipes and craft activities, visit www.CelebrateWithHersheys.com. Hershey’s complete seasonal collection can be found at retailers nationwide.

Great Big Wish List Giveaway: Therapy Shoppe

November 17, 2010 in Giveaways by Admin Dawn

Therapy ShoppeOne of our very first sponsors for our very first giveaway was The Therapy Shoppe. If you are looking for gifts this holiday season that are fun and helpful or need to find something special for your child’s teacher to use in the classroom, they should be your first stop. Toys are clearly organized to let you find just the thing for whatever challenging your child is facing and if you’re still not sure, you can take advantage of their terrific customer service and contact them to get some direction.

For the Great Big Wish List Giveaway, the Therapy Shoppe is giving (note: we are using their product descriptions):

Daisy Peg Playset: Especially nice for traveling therapists, this peg set is grand for 1:1 therapy, home, classroom workstations, or on-the-go play. Features 240 pegs, a built-in sorting tray with 6 compartments for organizing the pegs, and a “locking” storage unit that stores all the pegs underneath the daisy-shaped pegboard. You’ll love it! 11″x11″.

String Along Kit: Therapists, parents, and teachers RAVE about this FABULOUS toy!!! This dynamo lacing/stitching/punching kit works on building bilateral, eye-hand, fine finger, design copy skills and correct pencil grasp; while providing proprioceptive input to fingers/hands! Kids can create their own designs or follow one of the kit’s 16 colorful pattern cards to make gorgeous pictures/patterns! Pick a string, thread the Punch Pen then “punch and pull” a colorful design. The extra super sturdy design board, kid-safe Punch Pen, and 18 bright laces will provide infinite hours of lacing fun for individual children–or all the kids on your caseload! This reusable “picture perfect” set is truly exceptional!

Soft Foam Lacing Beads: Velvety soft lacing beads in 5 pretty colors and 3 fun shapes! These durable, chunky lacers are nice for sorting, patterning, stacking, color/shape recognition, and tactile discrimination. This very tactile set includes 48 beads and 2 deluxe laces; packed in a sturdy plastic container.

Wikki Stix Book of Wiggles, Squiggles & Curlicues: This darling hands-on, interactive “board book” features 15 pages of charming rhymes and fun illustrations with something missing! Kids complete the colorful pictures using specific colors of Wikki Stix by following simple directions incorporated on each page. A delightful way to help little ones build their fine finger and eye-hand skills while learning their colors! Comes with 36 assorted Wikki Stix.

Learn to Dress Monkey: This lovable 22″ plush monkey is the perfect toy for developing fine finger and dressing skills! Features removable socks, sneakers, a t-shirt, and denim overalls that are fun for on/off dressing practice. Kids love putting on his (real) stretchy socks, lacing up his colorful sneakers, buttoning his pockets, snapping his straps, zipping his pocket and more… there’s 11 different dressing skills in all! This colorful, snuggly little monkey makes a wonderful bedtime buddy, too!

So how do you win? Since we think Therapy Shoppe is an especially great site for those who love and support our kids with special needs, we wanted your help in honoring the friends and family who make your life better. Head over to our Friends & Family forum and tell us here about the person (or people!) who make your life just a little bit easier! (And then let them know that they are welcome to be part of the site, too!)

Comments are closed to remind you to comment here for your chance to win!

How do I deal with meltdowns in public?

October 1, 2010 in He Said/He Said by Celebrate Calm

Question: How do I deal with meltdowns in public? How do I deal with strangers making comments or judging me?

Calm Dad Says: Remember that as a parent, your primary responsibility is not how your child behaves, but how YOU behave. The truth is that no matter how great a parent you are, you cannot always control your child’s (or spouse’s!) behavior. But you can always control your emotions. The quickest way to change your child’s behavior is to first control your own.

If you react emotionally out of embarrassment or guilt, your tension will escalate the situation. How many times have we yelled, “I don’t have time for your tantrum right now!” as if our kids are going to glance at their watch and say, “Oh, do you want to reschedule, Mom?” Put out the emotional fire and be the calm, immovable rock they can count on.

If you allow another person’s comment or opinion to cause you to snap at your kids, you are giving some stranger power over your emotions and relationships. Do not give anyone that power. You don’t owe anyone an answer. In the end, the relationship with your child is most important. And when your child sees that you can remain calm and emotionally available to them, even when others are giving dismissive glances, they will feel safe and secure.

Calm Kid Says: When I’m upset and freaking out, it’s usually because I’m feeling out of control of the situation. I don’t need my parents freaking out. That just makes me more upset because now no one is in control of themselves, and it’s just a big scream-fest or threat-fest. When they are yelling or just glaring down at me, it’s not safe to even apologize. What I really need when I’m upset is for my parents to model calm and lead me into a calmer place.

I remember when I was little and I’d throw a tantrum at the playground in front of all the other kids and parents. My Dad would sit down, cross his legs and just say, “You can throw a tantrum if you want. If you do, do it with excellence. But if you want to figure out a better way to deal with feeling disappointed, I’ll go swing with you and we can talk about it.” That helped me to know there was a different way and he wasn’t going to go ballistic on me. And that’s why I trust him when I have teenage issues.

Celebrate Calm Founder Kirk Martin and his son, Casey (17), have trained over 100,000 parents, teachers and kids how to control their emotions through their newsletter, radio show and workshops. Sign up for their newsletter, say hi and learn more about their family-friendly programs at www.CelebrateCalm.com.

Community, Inside and Out

September 15, 2010 in From Julia by Julia Roberts

Quinn playingWe’ve been really busy here at the site. It’s wonderful to see new members, new groups, new connections and support throughout the site. It’s what we envisioned when we talked about this little idea to build a community for parents of children with special needs.

What I’m particularly excited about is that there are new members with adult children with special needs. Some came from the site Family Support Clearing House – a fantastic organization who we are partnering with to bring their community a forum as they change how they do things. I know for me, I tend to only think about the day-to-day life of kids under teens years. What keeps me up if I can’t sleep, is the thought about my kids’ futures and how best to help them be a productive (and happy!) member of mainstream society. Our new group, Adulthood, Independence and Special Needs will allow these discussions to happen and I’m eternally grateful for the parents on the group already who’ve shared their stories about their adult children.

As part of outreach, both in the mainstream blogging world and to other parents of kids with special needs, I had the pleasure of attending BlogHer. In less than two weeks I’m going to the Type-A Mom conference and excited to be part of a smaller gathering of bloggers and site owners.

I’m looking forward to learning new ways to reach other people about the site – in particular parents and professionals. At only a little over 4 months old, we’re thrilled at the growth we’ve achieved in such a short time – thank you for making it possible! It is because you are here that we are motivated to do more and do it better. If you have any questions about navigation or ideas about what else you’d like to see on the site, please let us know!

Recently I was asked to join a Parent Advisory Council for Children’s Healthcare of Atlanta and work as part of a small group of moms who get to bring ideas and offer feedback on all there is to patient experience. Being a part of this group was born out of an observation I made on twitter about how families who come in for clinic and treatments all the time didn’t get the same privileges as kids who are in-patient (like a 25% discount at the store and cafeteria, which isn’t a big deal for ONE visit, but if you are there over 200 times over the life of childhood kidney care and follow up, it means something) and they contacted me about the issue and also asked if I’d be interested in being on a newly formed council. Yes! I said and so here I am. Feeling like I am a part of something bigger. It makes this crazy special needs road I am on a little better I think when I can step outside of my own sadness and fear (and exhaustion). Please let us know of ways you serve your community to give others ideas about how to get involved to make a positive impact, we’d love to share it!

Through the PKD Foundation, for which I volunteer, I was able to have a chance to talk to nephrologists at an annual association meeting about the parent experience in raising two kids with ARPKD – the disease my kids have. It was rewarding but also very empowering. I think it’s important to talk about the quality of life on the inside of special needs parenting to a large group of people on the outside. While I know doctors know some about our lives, I was happy to share what it meant to me to hear these words when my daughter was just a few days old, “With kids like these, take them home and love them as long as you have them.”  Tell us how you’ve been able to share your story outside our demographic (of other special needs parents), we’d love to hear about it and share it with our members.

I’ve loved being here with you all and I appreciate your willingness to share your stories with me and with others. Through my kids’ kidney failure, dialysis, transplant, educational issues and emotional fallout it is so good for me to know that others are there and share the same journey. While you may not deal with these specific conditions/treatments, I know you understand sadness, fear, stress, financial strain, and what it means to be a parent of kids with special needs.

And I don’t feel so alone. So thank you.

Andrea McDowell: Ignorance

August 12, 2010 in Inspiration by Admin Dawn

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

My family is about as small as a family can be right now: myself and Frances. Her father and I separated about three and a half years ago, so we are right now a family of two. Frances’s family, of course, is larger.

Frances remains the same sweet, affectionate, giggly, energetic, clever little bunny she was when I first nicknamed her the World’s Best Baby Ever, Bar None–only now she’s six and a half, reading chapter books, memorizing facts about dinosaurs and in all respects acting like someone who intends to actually grow up. This still stuns me, somehow. Frances has now heard often enough about this that she sometimes asks me if it seems like I just brought her home from the hospital last week.

As for me: I work full time coordinating environmental assessments for wind farms, part time writing mostly short environmental pieces, volunteer for a couple of environmental groups–you may notice a theme here–do a lot of nature walks, read obsessively, take pictures, run, sew, bake, and of course take care of Frances. I ask myself, why burn the candle at both ends when you can break it in half and burn all four? While juggling them, even. Why not?

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

Initially I saw a post on Literary Mama‘s blog about the anthology, and I was mulling over what to submit when one of the editors–unfortunately I can’t remember which one but I think it might have been Jennifer–contacted me and asked me to contribute. I was thrilled to, of course. It’s my first book credit. :)

How did you choose to submit “The Story So Far?”

I didn’t. I’d actually written an entirely different contribution, about a death threat I’d received because my daughter is short. They asked me to rework and submit “The Story So Far” instead. Death threats have more dramatic potential but I suppose less of the everyday flavour they were looking for.

When I think back and try to remember the inspiration for “The Story So Far” for the blog, I believe it was because of the number of Google searches coming through obviously from pregnant women freaking out over a potential dwarfism diagnosis. “Fetal ultrasound short femur” or “short femur 32 weeks” or “achondroplasia ultrasound” or whatever. And people would leave comments or send emails — dwarfism is not like Down syndrome, or asperger’s, or autism. All forms of dwarfism together have a 1/10,000 rate for live births, and each particular type of dwarfism is considerably more rare than that. Right now, there isn’t a thriving online community of dwarfism or parent-of-dwarf blogs. There are a couple of memoirs, a couple of websites for in-person support groups, a bunch of medical information, and that’s it. Given that it wasn’t that long ago that a parent of a newborn dwarf might be told of their child’s promising career in the circus, that might not be so surprising.

When I was told that Frances would have a “mild form of dwarfism,” when I was seven months pregnant, I was terrified. (“But don’t worry,” said the doctor, “we’re pretty sure it’s not fatal.”) Completely terrified. Every new (mis)diagnosis terrified me again. When I got to that place on the other side of the terror, I felt a responsibility to telegraph it back to those pregnant women googling their eyes out after that first terrifying ultrasound: it’s coming, you’ll be ok, your child will be ok, better than ok. God knows, barring the medical merry-go-round in the first year of Frances’s life, she is a great kid. She makes being a mom very, very easy. As far as I’m concerned, I won the lottery.

From Andrea’s nature blog: Zoopolis: Ignorance

What are we learning? I don’t know. Something. But it’s fun.

I know nothing about nature.

An odd thing for an eco-geek and professional environmentalist to confess, I grant you, but it’s true. I know nothing about nature. Oh sure, I have an undergrad degree in Environmental Studies complete with courses on ecology, biology, complex systems, remediation, and the history of environmental thought. And yes, I do have a bookshelf full of field guides, albums and hard disks crammed with nature photos, pictures on the walls, and a deep and abiding love and appreciation for the life cycle of the trout lily and the trillium. But that’s just it. Once you’ve learned that much, you know that you could spend the rest of your life doing nothing but learning about non-human nature, and at the end of your alloted threescore-and-ten, you would still know so very little that it would amount to nothing at all. Nothing of any significance. A mere fingernail scratch on the surface of our vast and collective ignorance.

I think it’s a cheat, personally, and am very bitter that I only get that threescore-and-ten to figure it all out. If it’s going to take me a millenium, then dammit, why don’t I get one? Anyway, that’s not the point. The point is, I know nothing about nature.

Which makes you wonder–and well you might, since it makes me wonder–what special form of hubris I must suffer under to think that I am qualified to teach Frances anything whatsoever about nature?

Good question. Umm … I don’t know.

Biologists used to think that there might be as many as three million different species on the planet, until an enterprising entomologist (Terry Irwin from the National Museum of Natural History) went and fumigated a single tree of a single species in the Panamanian rainforest. Just one. Underneath it, before the fumigation, he’d placed several overlapping metre-wide funnels, so that anything that fell out of the tree could be collected and classified. And from just this one tree–just one!–he found 1200 species of beetles, 163 of them specific to this one species of tree. Extrapolating from this study, Erwin estimated that there may be 30,000,000 species of arthropods in the world, let alone mammals and worms and birds and all the rest. It was a controversial estimate, but even naysayers now assume that there are at least 2.5 million and possibly over 10 million species of arthropods. Arthropods!  And here I am, teaching Frances about pine trees. Biologists now estimate that the earth may host as many as 100,000,000 species, and likely between five and twenty million. Of which we have classified 1.5 million (and many of those assumed to be duplicates).

That’s a lot. By the time we catalogue them all so many more will have evolved that we’d be starting from scratch again. As a species, collectively, we’ll never know anything more than the most basic information about nature. This doesn’t stop us from obliterating 100 species every day … but that’s another post.

I don’t know anything about non-human nature. YOU, dear reader, know nothing about non-human nature. Our most emminent biological experts know NOTHING about non-human nature. This is an insoluble ignorance. We might as well get comfortable with it.

So who do I think I am, taking Frances outside to teach her about nature?

Well. I do teach her a couple things, like acorns turn into oak trees, chipmunks are fiercer than squirrels, maple syrup comes from maple trees but not the kind growing out back, chickadees stay here all winter, that trillium is at least seven years old, this Queen Anne’s Lace is actually a wild carrot and not native to Southern Ontario, and other unrelated bits of trivia that I’ve collected over the years. It all adds up to … nothing, probably. Not even as much as she’d need to pass a highschool ecology test.

She’s not learning about math outside, when she’s with me, though we often count things we see. She’s not learning about art or aesthetics, though we often comment on the beauty of what we find. She’s not learning about biology in any practical way when I teach her about tadpoles and frogs, and she’s too young to be terrified of the natural world so I don’t tell her about the endocrine disruptors we’ve dumped so much of into the environment that many frogs are going extinct because they can no longer reproduce. Maybe she’ll pick up enough to be useful to her in her future academic or professional careers, and maybe not.

I don’t care.

So long as she learns to love it.

She won’t love it in the same way or for the same reasons I do. That’s ok. There are at least 5,000,000 good reasons to love the world (though falling fast); we don’t need to share them.

It’s so easy with kids. They have a natural affinity for animals and growing things. All you need to do is give them an opportunity and get out of the way. Just don’t tell them it’s gross or dirty or going to give them the plague.

But in another way, it’s so much harder than memorizing and reciting cool facts. I am teaching my daughter to love a dying world.

No one ever fought to save something they didn’t love first. She won’t fight to save our world–neither will you, neither will your kids–if she doesn’t love it first. So I’ll take her outside to teach her to love it, and let her figure out the rest for herself.

There are compensations.

Wood Song

Sarah Teasdale

I heard a wood thrush in the dusk
Twirl three notes and make a star.
My heart that walked with bitterness
Came back from very far.

Three shining notes were all he had,
And yet they made a starry call–
I caught life back against my breast
And kissed it, scars and all.

What if a bird’s song could do that for you, or your child?

The world is a big, beautiful place, even broken and hobbled as it is, filled with amazing and gorgeous things, most of which have nothing to do with us. One thousand two hundred species of beetle in a single tree in the Panamanian rainforest. And we think our cities are diverse.

It’s not hard to love it, and love’s not hard to teach. Kids can fall in love with a mud puddle, if you let them get dirty. Just take them outside and get out of their way, and everything else will fall into place.

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

Study details autism’s heavy toll beyond childhood on marriages

August 5, 2010 in Special Needs News by Admin Dawn

The parents of grown children with autism are more likely to divorce than couples with typically developing children, according to new data from a large longitudinal study of families of adolescents and adults with autism.

“Few developmental disabilities appear to be more taxing on parents and there is a great need for support services for families when the child is an adolescent and adult.” ~ Sigan Hartley, assistant professor of human development and family studies

The study, published in the August issue of the Journal of Family Psychology by researchers from the University of Wisconsin-Madison’s Waisman Center, paints a new picture of the prospects of long-term marital success for parents raising a child with autism.

via Study details autism’s heavy toll beyond childhood on marriages (Aug. 3, 2010).

Very interesting study in light of Robert’s Eighty-Five post.

Meet Ellen of Love That Max

July 23, 2010 in Around the Web by Julia Roberts

Max and his sister SabrinaIf you’ve been blogging or reading blogs for a couple of years and you surf blogs to find new ones you might identify with you’ve probably stumbled across Love That Max by Ellen Seidman. The focus of her blog, she says, is inspiration and irreverence for parents raising kids with special needs. She’s got a powerful voice in the special needs genre and we’re delighted to profile her today to round out our relationships week – focusing on their family dynamics and relationships.

Ellen is mom to Max, 7 and Sabrina, 5. She’s married to Dave (the most patient guy EVER invented, she says). She’s been blogging since October 2008 and was thinking about it a year before, saying “I excel at procrastination.” For her (paying, day) job she’s freelance magazine editor/writer, professional snacker.

Enjoy getting to know Ellen as much as I have…

One of the things I love about your blog is how you write about the good and bad, I’m especially impressed when you write about a (special needs) parenting realization (a particular recent one was the one about Max wearing bibs in public)…have you always been so open on your blog? Or did that candidness evolve?

When I started the blog, I decided I was going to air it all. I needed to get stuff off my chest, yes, but I also wanted other parents to know they are not alone…and that they shouldn’t ever be ashamed to feel the way they do.

One of our recent focuses was about fun. I’d love to hear about how your family might alter your vacations to accommodate Max…if you do alter them at all.

If we’re going to a place that has a day camp, I’ll call ahead and make sure they know about Max’s needs. Right now, though, our vacations are all about accommodating BOTH kids, and making sure they have a good time! I can’t wait till they’re older and we can take them to places that don’t involve cartoon characters and princesses.

Can you recap some of the wonderful things people did to make your recent vacation great and how people made Max feel special?

Mostly, people were just incredibly kind. If Max was on a ride and didn’t want to get off, the operator let him go around again…and again and again. s The woman at the miniature golf course let him do it free. And a guy at the place we were staying even handed him a slice of pizza out of the box. Max charms people! Maybe he’ll be a politician when he grows up.

Would you talk about inclusion for Max and what that means in his daily life?

Max attends a school for kids with special needs. In other aspects of his life, I do my best to include him in typical-kid activities, whether it’s assisting him at a playground or encouraging him to show another kid how the speech app on his new iPad works.

Any words of wisdom you’d like to share with parents with younger kids with special needs? Particularly if it involves how to stay focused on weaving fun into our everyday lives (especially when the days seem long and seem to be the same (hard) day over and over.

During the early years with Max, my life wasn’t nearly as much fun. Not just because he needed so much more care; I was always so worried about him. The worry consumed me. In retrospect, I wish I would have made more play dates, both with friends and with other moms of kids with special needs. Going to places wasn’t always so easy with Max, because he was sensitive to crowds and loud noises, but if your child doesn’t have issues like that, get out there! Find museum exhibits to go to, kid play spaces, whatever. It’s good for both of you. Oh, and don’t put so much pressure on yourself to keep doing therapeutic stuff with your kids. Don’t worry that playtime always has to be “therapy” time. Try to relax. Be silly. Make up nonsense songs. Put on a CD and dance around with your kid. It’s all good.

In what way did the dynamics change with extended family members because you had a child with special needs? What are the challenges and what were you pleasantly surprised about?

I have to say, after I had Max I got even closer with my sister. We have such different personalities that we were never best friends, but I can’t even begin to tell you how much she was there for me after Max was born. My mom (whose always been the most good-hearted person I know) and my sister would come visit on weekends and take care of Max, house stuff, you name it. They’d bring me little treats and presents. They’d tell me to leave the house and go take some time for myself. Oh, and they’d gush and gush about how cute Max was, which was incredibly uplifting during a very hard time in my life. I knew he was delicious, but I was so consumed with anxiety about his future that I’d forget to just enjoy my baby.

The hardest part was dealing with one relative who just didn’t GET what it meant to have a kid with special needs, and still doesn’t. This is the same relative who, mind you, said these awful words at the hospital as she stared at Max lying in an incubator: “MY children weren’t like that.” OMG. This relative has never gone out of her way to help Max or me. Maddening. But, I’m lucky to have a mom and sis who care (my dad’s elderly and unable to pitch in).

As for Sabrina, do you do anything specifically for or with her to make her feel special out of guilt (or feeling badly) for the care and attention Max receives? If so, can you expand on that a little bit?

I do special things for Sabrina because I know she feels that her big brother gets a lot more attention, which he sometimes does. However, I have said before that sometimes Sabrina is the needier one of my children—she is far more stubborn and less easygoing than Max is! I recently had the opportunity to take a trip with her for bloggers, which was great! That was a biggie, but every week I try to do special things with her. Some nights, I’ll put Max to sleep first and then we’ll read together. Or Dave will take just her to the pool or to get ice-cream. This also gives Max one-on-one time with me and Dave, which is good for him too. What’s not good is when I forget that she’s five and I take her on an errand with me to Target and she wants me to buy her every single thing in the store.

What about for the family…what are some of the obvious things that have changed (because of a child with special needs) and what are some of the subtle things that are different that your friends and family wouldn’t think about?

Max was our first child, so we’ve never known a family life without having a kid with special needs. I think that becoming a parent means you have significantly less time for yourself (UNDERSTATEMENT ALERT!!!!). As a parent of a kid with special needs, you have even less time than other parents because there’s just so much more to juggle. That said, I am not sure friends and family realize the joys Max brings us. I think they feel sorry for us a lot of times, but let me just say that Max’s giggle could be marketed as a cure for depression. It is seriously better than Prozac.

How do you and Dave stay connected as a couple?

We have no qualms about hiring babysitters and getting out on Saturday night or even the occasional Sunday night. Sometimes, we’ll even have a sitter on Saturday morning, just so we can spend some day-time together. On occasion, we’ll sit on our deck at night, have a glass of wine and talk about our day. Or sometimes, he’ll make me dinner. LOVE that. I hope you are reading this, honey.

(Before you read on, go to Ellen’s blog and read this post about “How a kid with special needs affects your marriage: extreme honesty”)

Can you share some tips on how you make things work for your family in general? What’s your secret to happiness (and raising a child with special needs)?

My husband and I are good about sharing responsibilities and working with each other’s strengths. For instance, I’m good at researching things, so I’m often the one to figure out new equipment for Max or find new therapists; Dave is better at feeding Max than I am, so he often does that (he has approximately a billion more times patience than I do). We try to have a healthy social life, which is good for the kids and good for us! We’ll have weekend BBQ’s with friends or meet up at fun places like science museums. Sometimes, we’ll double date with other couples. Having fun makes life more stress-free. So does not beating yourself up about stuff. Dave and I know that we are doing the best we can, and that some days, we are not the most perfect parents but in general, we’re fine. As for my secret to happiness, I don’t have any one genius thing to share (if I did, I think I could be very rich!) but I will say there’s one thing that always gives me a bliss boost: Kissing my kids. No matter what kind of crappy day you’re having, or what kind of a mood you’re in, kissing your child suddenly makes everything feel so much better.

Love That Max is up for a Parents Connect award…go and vote for her!

To follow Ellen on Twitter

She also writes for 5 Minutes for Special Needs and Hopeful Parents, sites I also love, so be sure to check out her posts there as well.

Avatar of Karen

by Karen

Single Moms — Web Outcasts

July 22, 2010 in Loved Ones by Karen

I’m frustrated by the lack of voice that single parents still have in online content. I half-jokingly remarked to a friend (also a web geek and also a single mom) that we single parents seem like web outcasts. We live outside of the “normal” communities. We have our own little enclaves of content, but we are not part of most of the large communities.

It’s not as if we aren’t out there – and contributing some great content: Single Mom Seeking, Dad’s House, Single Mom Says (check out the Singlemommyhood.com list for more).

So why hasn’t our voice been heard? Why are we regarded as an invisible minority?

I think it’s due to a few factors. One of them is misconceptions about single parents – who they are, what they are, and how many there are:

  • only 24% of all households (US) are a married couple with children
  • 45.8% of (US) marriages end in divorce
  • single mothers are not just teenage mothers:
    • teenage mothers are only 11% of births (US)
    • almost half of all single mothers (US) are divorced single moms (3.392 million)
    • 33% percent of single parents have never been married
  • 11.2% of ALL (US) households are currently single parent households
    • 27.7% of households with children are single parent households
  • almost 30% of all US parenting content goes to single parent households
  • 37% of (Canadian) marriages end in divorce
  • 31% of all family households* (Canada) are not married:
    • 15.5% of family households (Canada) are common law families
    • 15.9% of family households (Canada) are single parents:
      • 12.8% are single moms & 1.3% are single dads
  • 31% of all Canadian parenting content goes to single parent households

In short: ONE THIRD of the US/Canadian parenting content consumers are single parent households.

Also worthy of note: Canada has a much higher single parenting rate than the US – in part because common law households and married same sex couples are more common (and legal) here in Canada.

Canadian crime rates are lower than US crime rates - and we have more single parent households (per capita) than the US.

This means that based on population numbers – every “parenting” panel, every “mommy” group of contributors and group of “parenting” content award winners should have more single parents. For every 10 married mom bloggers out there there we should also see at least three single mom bloggers and at least one single dad blogger as well.

Popular single mom bloggers and single mom community leaders are often regarded as “unusual” – while single dad bloggers and community leaders are as rare as hen’s teeth. The online market is saturated with married blogging moms. Unfortunately many content providers and marketers view married blogging moms as representative all parenting issues and priorities.

Nothing could be further from the truth.

What’s even worse is when a commercial community desperately attempts to market to the single parent demographic and they do a horrendous job of it. Like when Momversation deliberately chose to ask their panel members to represent an issue they don’t even have; being “a stressed working mom” or when they tried to bring in a single mom audience with the inflammatory and prejudicial question “can married moms and single moms be friends?”. Or how Blogher chooses to not have ANY single parent content or an editor for single parent content.

Imagine if someone tried to speak “for” another race or speak “for” another gender? Speaking “for” a group implies they can’t speak for themselves, that they don’t have a voice, are incapable of understanding their own issues, or that some other voice has more “authority”.

I can’t list how many times I’ve heard married moms compare themselves to single moms (or working moms) and outright stating what single (or working) mom issues must be because they think so.

They don’t ask what our issues are – they tell us.

One third of the market continues to be under-represented or to have our view presented “for” us – and the massive single parent audience is left with web content that is largely irrelevant, unappealing, useless, misleading, inaccurate and sometimes even insulting.

Why would commercial web communities exclude single parents? Is it a deliberate choice or an unconscious choice? Single parents recognize that we’re being excluded (unconsciously or otherwise) and we want to change it.

So we need to know why – and change what online communities know about single parents:

  • publishers of online content are genuinely unaware of how large the single parent audience really is – and that the single parent demographic is growing much faster than the married parent demographic (we are one third of the market and growing – fast!)
  • leisure time, lack of appeal or inclusion:
    • working and parenting alone leaves single parents with much less leisure time than other parenting families for publishing content and participating in online communities
    • single parents publish much less quantity content – but often publish higher quality content. Quantity of online publishers should be minimized and quality should be emphasized.
    • do not speak for us - invite us to speak instead
  • the image of the single parent – false perception that single parents are poor, uneducated, unemployed and inactive on line
  • broken homes nonsense: the mistaken belief that single parent households are a sad and broken – a real “downer” for their audience. Single parents are often empowered and positive images out there – LOTS of us have IMPROVED our situations by becoming single parents, including higher income levels
  • our discretionary spending power – the mistaken belief that single parents are raising only one child and that we do not have discretionary spending budgets. We often have entire households we maintain, more than one child – and the budgets to go with it.
  • age range – single parents are NOT only (or even mostly) teen mothers
  • fear of single parents as a negative “moral” influence – when many single parents are single parents because of their moral choices or beliefs

What do you think?
* Stats Canada counts households differently than the U.S. Census Bureau
Sources: U.S. Census Bureau, National Center for Health Statistics, Stats Canada

(This piece originally appeared in longer form at Momartfully, Karen‘s personal blog. We felt her points were so important that we wanted to share them here and publicly express our commitment to serving our members who are single parents. Karen is also the owner of our Single, Divorced and Widowed Parent Support Group.)

%d bloggers like this: