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by Julia Roberts

Markers of Time

March 30, 2011 in Featured, From Julia by Julia Roberts

I’m a fairly organized, detailed person. In fact, I’m probably borderline (ha!) OCD. This is all extremely helpful when parenting a couple of kids with special needs.

It also makes me want to record everything. That’s probably a good thing, right? I think I do it because I’m pretty sentimental. Plus, well, the kids have a life-threatening condition and so I feel like I have to. I have to.

One of the things I’ve noticed is that I can recall with certainty the date of nearly all medical events for my kids. Is that strange? I can almost tell you where I was when I received an important call (in the car when we learned my son would need EPO shots) or the details of a big visit to the hospital with one of the kids (the room color and temperature of the room where my son was diagnosed with a kidney disease). You know, little details.

I know I have my blog and scrapbooks at the ready so I don’t necessarily need to remember all the details, yet, I do. I think it is my internal way to honor their struggles. When I remember the details and can have long conversations with my kids about what has happened to them physically and emotionally I like to think that they feel like I was there; that they weren’t alone. In the isolating world of growing up with a chronic disease and learning difference I want them to know that I was there with them even though intellectually they know it.

A couple of times I remember haunt me. I think about what I could have/should have done differently. Many of of the time markers I hold on to are ones I can recall with pride that I (or the kids) handled everything the way I (they) should have.

A haunting: I wished I’d pushed harder one day before I did when my son had a horrible, painful surgery experience. It was night, he finally fell asleep but he was in horrible pain for a long time. It was his birthday. February 2007.

A good one: I worked around a doctor who would have allowed my daughter to go on dialysis but in a stunning turn of events they relented after a 2nd opinion and approval at another city’s transplant center. That happened in February 2009.

What are two of your time markers?

 

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by Admin Dawn

Around the Community

February 18, 2011 in Featured by Admin Dawn

Have you voted for us yet?

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

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

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

Check it out here and then be sure to enter!

Share Your Celebrations

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

Don’t hold back!

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

Welcome to New Members

Jeni

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

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

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

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

Amy Moss

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

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

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

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

christine – I’m 31 with 3 kids

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

Rachel

Stephanie

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

Have a blog?

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

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Avatar of Sylvia Ross

by Sylvia Ross

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.”

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by Dr. Tiffany Showalter

When the leaky faucet won’t turn off: dealing with drooling

November 2, 2010 in Ask the Occupational Therapist, Insider Insight by Dr. Tiffany Showalter

By: Dr. Tiffany G. Showalter, OTD, OTR/L

Drooling occurs as part of natural development in almost all young children, however not every child will stop drooling on their own. Did you know that our mouths are able to produce 2-4 pints of saliva every single day? Now imagine that you are not able to control what happens with all that liquid. Excessive drooling that occurs beyond the “cute” stage can be a real problem. It not only impacts a child socially, but is messy, can lead to dehydration, cause skin breakdown, result in infection, soil people and things nearby, and can smell pretty bad. Most children stop drooling after 18 months or when all of their teeth have come in, but some neuro-typical children will surprisingly continue to drool until they are 4 years old. Drooling is most common in children who suffer from disabilities that impair the nerves or muscles in their throats and mouths. Some examples include Cerebral Palsy, Down Syndrome, head injury, hypotonia, mental retardation, Muscular Dystrophy, seizures, stroke, and/or enlarged tonsils. Many sudden onset illnesses also can cause drooling, so a physician should always be consulted to determine the cause. They may suggest treatments like speech therapy, occupational therapy, biofeedback, medication and/or even surgery.

As I have mentioned, many different conditions can result in the problematic water works, but maybe some specific strategies can tighten the valve if not close it off completely. To understand how to manage it, let’s investigate it further. Saliva is produced around the clock in our mouths to aid in speech by providing moisture to the mouth, eating by moistening food, and digestion by beginning the breakdown of food. Drooling occurs when saliva falls from the mouth as a result of an overproduction of saliva and/or problems controlling that saliva inside the mouth. Researchers have proposed four main reasons this might happen:

  1. Awareness: Some children are not aware that they are losing saliva from their mouth
  2. Frequency of swallow: Some children do not swallow often enough
  3. Efficiency of swallow: Some children do not clear the mouth efficiently when they swallow.
  4. Poor seal formed when lips are closed: Some children maintain an open mouth posture or fail to form a tight seal when closing their mouth

These children may need a little help developing the coordination, awareness, and lip strength/flexibility in order to stop or reduce drooling and I have come across some activities which may help do just that.

First, gather some things you will need:

  • ➢ Straws
  • ➢ Cotton balls
  • ➢ Whistles, horns, kazoos
  • ➢ Lollipops
  • ➢ Chewy, sour tasting candy**
  • ➢ Peanut butter**
  • ➢ Bubble fluid
  • ➢ Dental floss and life saver shaped candy
  • ➢ Most of all PATIENCE!
  1. STRAWS require a child to use lower lip control and develop the facial muscles required to stop drooling. When appropriate, allow the child to drink from a straw, rather than a Sippy cup which can make drooling worse. Make it a fun challenge, like putting pudding or apple sauce in a cup with a straw. Milk shakes work great too. If your child needs help learning to use a straw, try using a juice box. Put the straw in your child’s mouth and squeeze enough to give them a taste of what’s inside.
  2. WHISTLES, HORNS, and KAZOOS are another way for your child to practice the lip control they need to stop drooling. It may not be music to your ears, but the result, a dry child, will make it worthwhile. Some earphones might not be a bad investment for your ears either.
  3. Blow! COTTON BALL races are a great way to help stop drooling and have fun at the same time. Place a cotton ball for each racer on a smooth, flat surface. On your mark! Get set! BLOW!!! It’s a great lip exercise disguised as fun.
  4. BLOWING BUBBLES is another great way to help stop drooling. Again, by practicing lip control, children develop the strength, lip range of motion, and skill required to help with the problem of drooling.
  5. For children without peanut allergies, PEANUT BUTTER can be a great tool. Wipe your child’s lower lip free of drool, and smear a LITTLE (not enough to choke on) peanut butter on your child’s lower lip. The child then licks the peanut butter off the lower lip. As they lift their lip to get all the peanut butter, they will be performing strengthening and range of motion exercises.
  6. Sucking on a LOLLIPOP promotes active lip stretching and lip closure which may reduce drooling.
  7. Chewing is a great activity for those children without swallowing difficulties to increase awareness within the mouth. Add sour flavors for the added POW! Sour flavoring has also been shown to increase the frequency of swallowing as well.
  8. Lace a LIFE SAVER TYPE candy with DENTAL FLOSS. While you hold both ends, place the candy inside the child’s mouth and play “tug-o-war”. Instruct the child to close their lips to keep from losing the piece of candy.

Warning

DROOLING can also be caused by an underlying physical condition, such as enlarged tonsils, or by facial structure. If your child cannot stop drooling, speak to his or her pediatrician. Sometimes the problem requires more intensive medical intervention. Additionally, swallowing difficulties can result in life threatening problems, so always consult a physician to rule out any complications.

Read more

How to Help a Child Stop Drooling | eHow.com

How to Stop Drooling by Pam Marshalla

Disclaimer: I hope you enjoyed reading this article. Please remember you are reading this information of your own free will and are taking the information at your own risk. The author is the legal copyright holder of this material it may not be used, reprinted, or published without my written consent. This information is for entertainment and informational purposes only and is not intended to provide or circumvent medical, legal or other professional advice.

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Avatar of Julia Roberts

by Julia Roberts

Featured Blogger: Meet Janis of Sneak Peek at Me

June 25, 2010 in Around the Web, Latest Articles by Julia Roberts

We discovered Janis’s blog, Sneak Peek at Me, via her Twitter and immediately became fans of her friendly, generous tone and her terrific pictures. We knew she was all over the online special needs community connecting people and speaking out about the joys and challenges of raising a child with special needs. Her son, Austin, is 2.5 and is clinically diagnosed with Branchio-Oto-Renal (Melnick-Fraser) syndrome and has several complex medical needs. You can read more about him here.

Can you provide the basics about yourself?

I’m a single mom born & raised in Los Angeles. After graduating from college I spent some time living in NYC, Guadalajara, MX and eventually Dallas, TX – where Austin was born. Before having Austin I focused full time on my career as an Office Manager, those skills have served me well in dealing with Austin’s medical care. I can coordinate the heck out of his doctors. (I think I might scare them just a little bit.)

Can you tell us when you started blogging? And what was the focus in the beginning?

I officially started my blog just over a year ago in May 2009. I started writing regularly in 2007, during my pregnancy on a website for pregnant women, then I moved to email updates. I sent out a mass emails to family and friends with pictures etc. Finally I decided to put all the info and pics in one spot, it made more sense for people to come to me. My blog was basically started on a whim. But it was the best decision I made, I’ve met so many wonderful people through our blog.

Tell us about Austin, how is he doing?

Right now Austin is stable *knock on wood*. The good news he hasn’t needed surgery for over two years, but that is about to end. This summer he will be having his first major craniofacial surgery. This will be the first real “crisis” I’ve ever had to blog through and I am still trying to figure out how I will balance his privacy and the public’s curiosity throughout his recovery.

What is the best thing about blogging about your son and your journey? And what is your worst?

The best thing about blogging about Austin’s journey is that I can help bring awareness to others about the issues faced by families dealing with Special Needs. Hopefully that will eventually lead to a wider understanding and acceptance for those with Special Needs. The worst part of blogging is worrying about people thinking that I am exploiting my child. Also there is that worry about how he will feel about this 10, 20 years from now and feel about his every move being broadcast to the world.

What’s your biggest challenge with raising a son with special needs?

My biggest challenge…wow I feel like I have so many big challenges. Probably two biggest challenges are related and they are the financial strain and the fact that I am a single parent. Those two things would still be present even without Austin’s medical needs, but knowing that I carry the entire show alone is a struggle.

You recently wrote an excellent post on acceptance and tolerance …tell us why.

I recently wrote a post about our visit to a local barnyard petting zoo. Let me preface this by saying that during most of the year my son only leaves the house to visit family or go to the doctor. During the summer I tend to let my guard down about germs and their carries (other kids) and we do more stuff outdoors. This was our first summer outing to the petting zoo. He had a blast, but it was apparent that he was an “attraction” for the other kids. I noticed that parents were either oblivious to it or saw it and chose to ignore it. When I got home I wrote that post our of frustration. Before I hit Publish I reflected on how this could be used as a teaching moment. Once I got that perspective I was able to reword it and add some helpful links & resources. So far it has been well received by the mom blogging community and for that I am grateful.

You write for other sites, please provide links so we can share them with our community.

I also contribute to 5 Minutes for Special Needs Moms,  Complex Child, ShePosts and last but not least Kidz.

Besides special needs tell us what else you are an advocate for?

I’m also an advocate for breast cancer research, as my grandmother died 11 years ago from breast cancer. But generally my focus these days is on topics surrounding families affected by special medical needs and rare disease diagnoses.

What do you do for fun?

Before Austin was born I had an entire room devoted to my scrapbooking hobby, but that activity has been seriously curtailed in the past two years. Now I collect scrapbooking supplies! ;) In my spare time I enjoy reading…books, fiction mostly. I also spend a lot of time with my family.

Please tell us anything else you’d like to share with our readers.

While the content and focus of our blog is awareness and acceptance of medical issues, I would love for people to understand that through all of that Austin is a fairly typical toddler and we do have fun. It’s not all gloom and doom every day….just maybe every other day. ;) Oh also I tend to use some humor to get through tough situations.

We hope you will check out Janice’s blog and see what an uplifting and entertaining resource it is. We thank her for being our first featured blogger in our Around the Web series! Do you know a blogger or have a blog you’d like to see featured? Contact us!

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by Julia Roberts

The Sheepy Sheep for Sleep Giveaway

May 10, 2010 in Giveaways by Julia Roberts

Say that 5 times fast! I can’t. But I always did slur my S.

Back in September, a week or two before my daughter Quinnlin had her kidney transplant we received an anonymous package at my office. It was from the Therapy Shoppe and inside I found a sound machine sheep and various little games and finger toys. I remembered about a blogger friend (love our Internets People) who’d once referenced the finger toys and I guessed correctly the package was from her.

The best thing about the Sleep Sheep, who Quinn named Sophia but mostly calls Sheepy, is that is has calming sounds. Quinn’s favorite? The ocean, which has a whale sound. There are 4 sounds and to Quinn the mother’s heartbeat is “weird,” even though I explained before she was born that she loved the sound of my heartbeat! The rain and white noise sounds are pretty real, too.

Quinn’s story was told by a local reporter and in the final editing you can hear her say on tape, “Where’s my sheep!” Sheepy went into surgery with Quinn (mask and cap, of course) and was there at her head when she was in recovery. I tweeted a picture of her, just an hour after surgery. Sheepy has been a part of our lives since, sleeping with Quinn every night, makes all overnight road trips and has been to a number of clinic visits where she has her labs drawn. It’s extremely soft and has a little texture. I don’t think we’ve changed the batteries that came with it, I guess in part to the automatic shut off timer.

The Therapy Shoppe loved that Quinnlin loves Sophia/Sheepy and wanted to share one with our community. We bet your child (or secretly, you) would love to snuggle up your own Sleep Sheep. To thank them we gave them a blog ad.

To have a chance to win your own Sheepy, you need to be a member (so register if you haven’t) and then leave a comment here about a dream, good or bad, from you or your child. It doesn’t have to be long, either. We’ll do a randomizer drawing again. If I were going to enter, I’d just say, “When Quinn was four she had a dream about scary flying monkeys and still remembers it.” But for you folks and the purpose of finishing a funny story, I’ll add that two weeks later her aunt gave her a book about monkeys and Quinn thought that was very mean. Said aunt did NOT know about the scary monkeys dream and we still laugh about it today. And we still have the book, titled Naughty Monkeys!

You have until Friday, May 14, 2010 at 5:00CST to register for our site and then comment for a chance to win.

If you don’t win, don’t worry, you can own your own Sheepy for what I think is worth way more than $25.99 plus shipping. But spend some time on their site…they have some cool stuff. Especially for my anxiety-ridden boy the fidgets (calming toys) came in handy for school.

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Avatar of Children's Healthcare of Atlanta

by Children's Healthcare of Atlanta

Preparing Your Child for Surgery

April 5, 2010 in From the Hospital, Latest Articles by Children's Healthcare of Atlanta

Before the Procedure

Any surgery or medical procedure is a big event in a child’s life. Studies show that children cope better with medical procedures when they are well prepared ahead of time. Parents are better able to help their children when they are prepared as well.

Helpful Hints at Home

There are many ways parents can help make an upcoming procedure easier for their child.

  1. Answer your child’s questions honestly.
  2. Help your child feel more in control of the situation by offering choices before you leave home, such as what to wear or what to bring.
  3. Put your child at ease by showing your confidence, not your concerns.
  4. Listen to your child’s comments and be sensitive to hidden fears.
  5. Assure your child that illness and medical treatment are not punishments.
  6. If you have any fears or anxieties about the procedure, discuss them with your child’s doctor away from your child and before the day of the procedure.
  7. If possible, make arrangements in advance for the care of any brothers or sisters on the day of the procedure. You will want to focus on caring for the child who is having the procedure.

At Children’s Healthcare of Atlanta, a child life specialist, trained to help children and families cope with hospitalization and illness, is available to help you prepare your child for the procedure. The Child Life department at Children’s at Egleston and Children’s at Scottish Rite offers pre-admission tours for those scheduled for medical procedures or surgeries.

  • The tour before admission gives you and your child a chance to visit the hospital and see the sights, sounds and events you will experience the day of the procedure.
  • The tour will give your child a chance to build trust, understand what is involved and gain control over the experience. It is a non-threatening way to learn about the hospital.
  • Children are less scared when told what to expect and why. Pre-operative teaching can give your child the support that is needed.
  • Parents and children over the age of 3 are welcome – as well as brothers and sisters over 3.
  • Parents of children under the age of 3 are also invited; however, the tour is geared toward children over 3.

Document Prepared by the Children’s Healthcare of Atlanta Department of Surgery

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