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Holidays in the Hospital

November 16, 2011 in From the Hospital, Insider Insight by Children's Healthcare of Atlanta

By Ginger Tuminello

Child Life Specialist for Heart, Kidney and Liver Transplant Patients at Children’s Healthcare of Atlanta

The holidays can be stressful, especially if your child is in the hospital. Here are some tips on making the holidays in the hospital a little more bearable.

Acknowledge your feelings and the feelings of your child.

Being in the hospital, especially over the holidays, stinks. Recognize those feelings and say them out loud to your child. Once you’ve established that you’re both sad/upset/frustrated, focus on the things that can make being in the hospital over the holidays better. Just think, one day you may be telling stories that start, “Remember that Thanksgiving we spent in the hospital and had to eat turkey from the cafeteria…”

Continue established family traditions, or some variation of them.

As a family, identify what family traditions are most important to you and find ways to continue them. If your family always goes to church on Christmas morning, find out if the hospital chapel is having a service. If you always make holiday cookies, try making holiday ornaments instead. If your child’s favorite Thanksgiving treat is pumpkin pie, have someone make and bring it to her (if dietary restrictions allow). Or simply postpone Thanksgiving dinner until your child is feeling better and out of the hospital. There are no rules that say you must eat Thanksgiving dinner on Thanksgiving.

Create new family traditions.

Talk to your family about starting new holiday traditions. Make holiday ornaments to put on the hospital tree. Plan a holiday game night using either board games you love or finding new holiday games to play (check out http://www.coolest-christmas-holidays.com for some ideas). Make small gifts for the nursing staff. Organize a toy drive or fundraiser for hospital or organization. Your hospitalized child could always help design a flyer and plan other details.

Find out about special events and visitors offered by the hospital.

During the holidays, lots of folks enjoy volunteering and putting on special events for the hospital. Even though the local nursing home group playing hand bells may not sound very exciting, you might be surprised. Think of these events as opportunities to get out of the room, socialize, and make new holiday memories.

Start a special project with your child.

Take pictures and create a holiday scrapbook. Make holiday cards for other patients. Make gifts for family members. There are lots of inexpensive craft projects that you could do with your child that would provide hours of entertainment and bring a smile to many faces. Check out www.familyfun.com or www.craftbits.com for some great ideas.

Decorate.

Nothing says holidays like decorations. Bring a holiday blanket and pillowcases from home. Create holiday pictures and hang them on the walls. Get a small fake tree, decorate it, and put it on display. Get washable window paint and paint your windows. Wear festive clothing. If the room looks festive, you may find yourself in the holiday spirit. Just be sure to check with the hospital staff about policies regarding lights, hanging pictures, live plants/flowers, and window painting. And don’t forget to bring pictures of your loved ones at home.

Plan one small thing to look forward to each day.

The trouble with being in the hospital is that it gets boring and redundant. Plan something each day that you and your child can look forward to. Pick out an interesting location (i.e., gift shop, outdoor garden area) and plan for an afternoon walk there. Rent or borrow a new movie and plan for a movie night. Borrow a game you’ve never played and have a game night.

Create a schedule for visitors.

Hospital rooms can be tight quarters and too many visitors at once can be overwhelming. Creating a schedule for visitors can help limit the number of visitors and also allow you to schedule some quiet/alone time, which is important.

Find out the visitor policies.

During cold and flu season, some hospitals don’t allow siblings to visit. Find out these policies and ways to work around them. Is there a common area that the siblings can come to, like the cafeteria, so that you have time as a family? Could you use technology like Skype to communicate when you can’t be together? Try playing a game using Skype, making sure there’s a board on each end. Have your children at home and your hospitalized child write letters, send pictures, or record messages/stories often. Getting mail or email can really light up someone’s day.

Make time for yourself.

If someone offers to play with your child so that you can take a break, let them! Go for a walk, get a cup of coffee, or take a shower. Make sure that you are taking time to decompress and focus on yourself.

Use your team.

Your child life specialist, social worker, and chaplain are all great resources to help you and your family cope with hospitalized holidays. Be sure to let them know when you need something or just need to talk. They can be a great source of comfort and support.

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.

Autism Awareness Month: If I only knew…

April 25, 2011 in Featured by Jennifer King

It’s April. Autism Awareness Month, and the month is almost over. As the mother of a seven (almost 8 year old son) on the spectrum, I felt like I should say something. In fact it’s been weighing on me greatly, just what I should say.

The truth is I have written and re-written this post what feels like a million times and was never happy with it. I wanted to say something, but I’m no expert of any kind. I’m just a mom, not even one of those Autism Warrior Moms you hear tell about. I’m just an ordinary mom of two regular type kids, one of whom happens to have autism.

So then I started over from scratch. I thought, if there was one thing I wish someone could have told me about autism before my son was diagnosed, what would it be?

So here goes…

There is a saying you may or may not have heard, ”If you’ve met one person with autism, you’ve met one person with autism.” It’s seems sort of obvious doesn’t it? Not all typical people are exactly the same, why would those with autism be. But it’s a truth that I think many people don’t fully grasp. Before my son was diagnosed, I didn’t get it. Not at all.

I thought I knew a fair amount about autism. I’d read a couple of books. I’d met a handful of people who’d been diagnosed with it. I knew about Temple Grandin from when I was taking animal husbandry courses in jr. high and high school.

But the truth is the image I had in my mind was a very stereotyped one, and it was an image that did not match up with my son. Even when family members suggested I look into it, I just couldn’t see it. I did mention it to the pediatrician who didn’t see it either. She saw some delays, as did I, but not autism. If I’d known, I mean really known? I don’t think I would have left it at that.

I’d wish I’d known that kids with autism can be goofy, and silly and giggly and cuddly. I wish I’d known just how smart and talented and loving and amazing children with autism can be.

I wish I’d known all that, I mean really known that, when Max was little and first showing the signs. Would an earlier diagnosis have made much of a difference for him? It’s hard to say, but at least I would have known I had done my best for him from the start.

I would have understood why he struggled with things that other children seemed to sail through. I like to think I would have been more patient with him. A lot more patient.

And maybe… just maybe… I wouldn’t have felt so alone.

Because there are so many of us. Not just parents of children with autism, but all of us parents of children with special needs, children who struggle to fit in a world not made for them. We are not alone.

We don’t have to be.

Community member Jenny who blogs as Jittery PlanetSingle mom to two boys, one with autism and one neurotypical, starting over again smack dab in the middle Minnesota.

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.

Meeting the Geneticist

March 10, 2010 in From Julia, Latest Articles by Julia Roberts

I’ve been thinking that we have a lot of specialists. More than most not as many as some but it includes a couple of geneticists. We’d met our first one with our son Gage, when he was 20 months old.

That was some appointment.

He walked into the room holding several books. Was it four? Six? I don’t remember, but I remember that they were thick. I do remember that it was a lot for the size of him. I’m not sure I remember how he greeted us or if he was engaging with Gage, who was sitting on my lap but I do remember how scared I felt about the appointment.
Scared he would tell us something awful about our baby. My Gage, who wasn’t walking, talking or doing anything remotely on time so the baby books stated while I read them during quiet nights.

We’d had Gage’s blood drawn days prior, based on the requirement of making the appointment. They were looking for anything mutant that might explain the ocular motor apraxia (OMA). Gage had already had an MRI and was in 7+ therapy appointments a week to address delays. We’d been referred to the geneticist by the neurologist who insisted 2 months earlier we run, not walk to the nearest therapy center, which we also did.

The Nutty Professor, as we referred to the doctor that day and ever since looked Gage over but good. He measured his limbs and trunk, tested him on a few toddler tricks, checked over his fingers and toes for the web lengths between them. He measured the length between his eyes and his ears and measured where his ears sat on his head. He pulled up, then down his lips to check over the gums. He asked us every question you can ask about interrelated marriage, disease in the family, any hunches you had about family members as far back as you can remember and your parents and grandparents ever talked about over the years.

And then it hit me. The Nutty Professor was only involved in our lives to tell us what was wrong with Gage. His job, his entire existence on that day, was to look for things that couldn’t be explained by the lay person, by the person just looking at our blond boy with the incredible smile.

He checked out the OMA for himself and said that he couldn’t be sure there wasn’t more issues to uncover as Gage aged. He wasn’t sure genetically where the mutant gene was – because it didn’t show up on the first pass – and they might not be able to if they dig deeper into the DNA.

We decided to stop. No more testing with that doctor. We didn’t know in the next few weeks I’d become pregnant with a girl whose body held another secret in addition to the OMA. Quinn’s birth and diagnosis would baffle the best scientists. Our kids would become those kids who had a syndrome not yet seen by a doctor and we would enter the world of studies and discoveries to be shared in medical journals.

The discoveries have delighted researchers but they haven’t mattered much to us since we learned that knowing wouldn’t change the course of what they had or treatment. One day, around 2 years later, I just let knowing what and why go and it didn’t matter anymore. That was a good day.

Julia Roberts, www.kidneysandeyes.com
Owner and Co-founder of SfSN

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