Archive for the ‘Help for your child’ Category

Have you found your child’s passion?

Wednesday, January 28th, 2015

building with blocksWhen you have a child with special needs, your mind tends to always center on the milestones you hope your child will achieve, and often forget that there are many things your child can already do, and often do very well. It’s so easy to get wrapped up in therapy and homework. Often, you only see the areas that need improvement, and don’t see (for lack of time or energy) the areas of talent or achievement. (Does this sound familiar?) When this happens, it is time to pause and breathe. And better yet, change your focus to take time to celebrate.

My daughter always loved to dance – you name the kind -she did it. Then that passion moved to drama, which is where she really found her niche. As a tiny tot, she used to memorize the dialogue to different shows or movies, and then act them out with her dolls, word for word. Later in high school, she joined the theater troupe. For a kid who had a speech and language delay, seeing her speak on a stage (often reciting Shakespeare), was mind boggling to me. Theater was her passion, and despite any struggle she was experiencing at the time, her dancing or theater pulled her through, and ended her day on a happy note. Even now, as she is a young adult, she participates in community theater productions.

Keep introducing your child to new things

All children have interests and passions. Does your child take things apart and then put them back together? He may be mechanically inclined. Does he build spectacular Lego cities and characters? He may become an architect or builder one day. Does your child dress in awesome couture-like outfits, draw, paint, play an instrument, enjoy storytelling, or participate in sports? You get my point – the list is endless and the possibilities are limitless. If you do not see a passion at the moment, keep introducing her to new things and watch as one emerges.

Very oftwatering flowersen, your child’s passion can be cultivated so that it becomes more than just a pastime. But even if it doesn’t become something more substantial, the accomplishment of any hobby or interest is something to celebrate. Cultivating a talent is a process. Like a flowering bulb pushing up through the spring earth, one doesn’t know what color the blossom will be, or how big or sweet the smell. You just have to water it and give it sun and protection, and then watch as it blooms on its own.

So, this is a gentle reminder to pause, breathe and focus on the positive moments in your little one’s life. Then, sit back and enjoy the moment as you see your little one in a whole new light.

What is your child’s passion? How did you help her to find it? Please share your tips.

Note:  This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January 2013 and appears every Wednesday. While on News Moms Need,  select “Help for your child” on the Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). You can also view a Table of Contents of prior posts. We welcome your comments and input.

If you have questions, please send them to AskUs@marchofdimes.org.

 

 

Tracking birth defects helps states help you

Wednesday, January 21st, 2015

Birth defects on PeriStats by stateDid you know that many states track and monitor birth defects? It is one way for them to better understand birth defects in order to try and prevent them. Today, I welcome guest blogger Melissa Gambatese, MPH, Research Analyst in the Perinatal Data Center here at the March of Dimes. Melissa will introduce you to the world of birth defects surveillance systems. It may sound a bit high tech or like something from a spy movie, but it is really a way for states to monitor birth defects and to hopefully use the information to help combat them and help families.

 

Every 4 ½ minutes a baby is born with a birth defect in the US. Birth defects are generally referred to as abnormalities of structure, function or metabolism (body chemistry) present at birth that result in physical or mental disabilities, or death. While some birth defects are caused by genetic conditions passed from the baby’s parents, the causes of most birth defects remain unknown.

The March of Dimes is committed to improving the health of babies by preventing birth defects. One of the ways to prevent birth defects is to better understand which populations are at highest risk for birth defects. This information allows public health professionals, policymakers, and health care providers to implement targeted prevention strategies. It also helps to provide adequate services to people affected by them. States monitor groups of people at risk for birth defects by establishing a surveillance system.

What is a surveillance system?

A surveillance system is a tool used in public health to collect information on a countless number of diseases and conditions. It provides a structure for identifying cases according to a standard definition. It also provides a way to analyze and then communicate surveillance findings to stakeholders, such as health care providers, researchers, and policymakers.

Surveillance systems can be passive, meaning they rely on physicians and medical staff to report cases to the state surveillance team, or active, meaning the state surveillance team reviews vital records, hospital diagnoses, and other data sources to identify cases.

Why do states have birth defects surveillance systems?

States use these systems to monitor trends in birth defects prevalence, or the number of babies born with a birth defect out of all live births born each year. States also use surveillance data to further research on the causes and prevention of birth defects and to link affected families to needed services.

States report surveillance data to the National Birth Defects Prevention Network (NBDPN), an organization of clinical and public health professionals dedicated to maintaining a network of state birth defect surveillance programs. Each year, NBDPN publishes a report containing prevalence data from all states with a birth defects surveillance system.

Do all states have a surveillance system?

The majority of US states (37 states and Puerto Rico) have a type of birth defects surveillance system.

Where can you find your state’s birth defects data?

Prevalence estimates reported by NBDPN for select states and birth defects are now available on PeriStats, the March of Dimes’ free statistical website. It contains the latest maternal and infant health-related data for the US.

Are birth defects preventable?

There is still so much we need to learn about preventing birth defects, but there are things that a woman can do before and during pregnancy to increase her chances of having a healthy baby. For example, it is known that maternal smoking causes a range of serious birth defects including heart defects, missing/deformed limbs, clubfoot, gastrointestinal disorders, and facial disorders (such as cleft lip/palate).

It is also known that folic acid taken before and early in pregnancy can help prevent certain defects of the brain and spine. Read this post to learn more ways to help prevent birth defects.

March of Dimes grantees are pursuing a variety of approaches aimed at preventing and improving treatment for many birth defects. Read about our research here.

 

 

Birth Defects: What have we learned?

Wednesday, January 14th, 2015

Birth defects prevention month CDC guest postSpecial thanks to Coleen Boyle, PhD, MSHyg, Director, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, for today’s guest post.

Each January, in recognition of National Birth Defects Prevention Month, we at CDC strive to increase awareness about birth defects and reflect upon all that we have learned so far.  We know what causes some birth defects, such as Down syndrome and fetal alcohol spectrum disorders. However, for many birth defects, the causes are unknown.

The good news is that, through research, we’ve learned a lot about what might increase or decrease the risk for birth defects. For example, we know that drinking alcohol during pregnancy can cause a baby to be born with fetal alcohol spectrum disorders. Taking certain medications, having uncontrolled diabetes, and smoking cigarettes are all things that can increase the risk for birth defects. We also know that getting enough folic acid, a B vitamin, starting at least one month before getting pregnant and during early pregnancy lowers the risk of having a baby with a major birth defect of the brain or spine.

Each of these research findings represents a building block, a step toward healthy birth outcomes. Understanding the potential causes of birth defects can lead to recommendations and policies to help prevent them. A great example of this is the research on folic acid, which led to the recommendation that all women who can become pregnant should get 400 micrograms of folic acid every day. This important research also contributed to the evidence needed to add folic acid to foods such as enriched breads, pastas, rice and cereals.

These building blocks start to form our foundation for understanding birth defects and help us identify what we still need to study in the future. While we have a learned a lot, much work remains. We at CDC continue to study the causes of birth defects, look for ways to prevent them, and work to improve the lives of people living with these conditions and their families.

To learn more about birth defects research, we invite you to join us at 1PM EST on January 20, 2015 for CDC’s live webcast titled “Understanding the Causes of Major Birth Defects: Steps to Prevention.” Experts in birth defects research will present an overview of current and historical efforts to understand the causes of major birth defects. They will also discuss the challenges in turning research findings into effective prevention. For more information on the upcoming session, please visit http://www.cdc.gov/cdcgrandrounds/.

This year, we encourage you to become an active participant in National Birth Defects Prevention Month.  Post facts about birth defects marked by the hashtag #1in33 on social media or share your story and how birth defects affect you and your family. Join us in a nationwide effort to raise awareness of birth defects, their causes and their impact.

 

 

New Year’s resolutions – good or bad for kids with special needs?

Wednesday, January 7th, 2015

celebrationI have never been one to commit to a New Year’s resolution, in part because I would feel badly if I did not follow through and achieve my goal. Most of the time, my resolution was such an unobtainable goal that I set myself up for failure. Sound familiar?

Kids with special needs all too often face immense challenges and have to try and try again to reach goals that their peers seem to attain with ease. As a parent, it becomes very important to carefully pick and choose goals and to try to make sure your child is not facing undue hardship or repeated failure. As with any struggle, a little bit of a challenge is good – it spurs you to move onward and provides a huge sense of relief and pride when you reach your goal. But, too much struggle can bring exhaustion of body, mind and spirit, which will not help your little one in the long run.

As a parent of a child with special needs, it is important to set goals and have aspirations for your child. But it is essential that the goals are reasonable. There is no sense in whittling away at your child’s confidence by setting a bar too high and then having to deal with the negative self-image your child experiences if the goal is not achieved.

As you settle into the mindset of New Year’s resolutions, think of goals that are measurable and achievable. Perhaps set three small goals instead of one big goal. Or, let your child decide what he would like to focus on (if he is old enough to decide). For example, it could be that riding a tricycle is something he really wants to be able to do and will work on that goal for a few minutes every day with your assistance and praise. Or, it could be that dressing himself is something you really want to see your child master, so you may focus on one aspect of that task at a time (such as putting on socks, or pants), and gradually adding on other aspects of dressing as each small part is mastered.

Whatever the goal, break it down into smaller chunks, so that each week you can celebrate progress. A sticker chart can work wonders to help your little one see how far he has come. Just be sure to be consistent and celebrate each step as he inches closer to his goal. You can never do too many happy dances!

So, go easy on yourself and your little one as you glide into 2015. I wish you and your family many happy moments, continued progress and much success.

 

Note: This post is part of the weekly series Delays and disabilities – How to get help for your child. It was started in January 2013 and appears every Wednesday. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also view a Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Happy New Year!

Friday, January 2nd, 2015

fireworksAll of us at News Moms Need thank you for your comments, questions and support throughout the year.  We wish every one of you and your families a healthy and happy year ahead.

I look forward to continuing the series on Delays and Disabilities - How to get help for your child, next week.

See you in 2015!

Turning 2 – Thank YOU!

Wednesday, December 31st, 2014

2 year old birthday cakeAs the News Moms Need’s blog series on Delays and Disabilities – How to get help for your child turns 2 years old next month, I just want to take a moment to thank all the parents who read this blog and send in comments or questions. It is a privilege for me to write it, but, without you, there would not be this blog series…so, thank you. Parents of kids with special needs are unique, and we all need one another to spur us on and help our kids. I look forward to sharing ideas and thoughts as we slide into the new year.

May 2015 bring good health, progress and success to all of you.

Happy New Year everyone!

Sweet dreams

Wednesday, December 24th, 2014

On Christmas eve a few years ago, my colleague, Lindsay, published this post. The sentiment is perfect to capture the wonder of this special day, even if you do not celebrate Christmas. Enjoy!

 

familySweet dreams

When you were a child on Christmas Eve, how long did it take you to fall asleep? If you had brothers and sisters, did you all talk about Santa and wonder if you would hear the reindeer on the roof? If you hid behind a chair, would Santa know and not come, or would you get to sneak a peek at the big guy?

As we grow older our sense of wonder seems to change. Those special dreams from childhood often turn into adult worries about expenses or finding a job. Many of us get jaded and find the holidays more taxing than tantalizing. I find that sad.

Here’s an idea for tonight. Look at your little ones, or your neighbors’ children, and imagine this night from their eyes. Put on your PJs when your children do and snuggle up with a story. Tell them about Christmas when you were their age. Become young again and let them share their excitement with you. Look for the joy of the moment and be grateful for what the morning will bring. Let your worldly trials and travails go for 24 magical hours.

And if you do not celebrate Christmas, snuggle up with your babies anyway and let them know how beautiful they are and how much you love them. Sweet dreams everyone.

Spending holidays in the NICU

Friday, December 19th, 2014

Parents in NICU If your baby is currently in the NICU, this may not be how you envisioned spending your holidays. The realization that your baby is not home for Hanukkah, Christmas or the start of the New Year can be a real jolt. But, with a little creativity, an open mind and a willingness to adapt, you can still make your holidays bright. Here’s how:

• Although no two NICUs are exactly alike, many will allow you to decorate your baby’s bed space (but ask first). You may be able to attach pictures or tiny holiday decorations on the side of the incubator or warmer bed.

• Engage your other children if you have them. You can take a photo of them and pin it up on the side of your baby’s bed (if allowed). Likewise, take a photo of your baby and bring it to your child or children at home to decorate. They can make a Christmas ornament out of it and hang it on the tree or draw a picture around it and set it up next to the menorah. This way, your littlest one is always present at your home in a physical way.

• If your baby is healthy enough, see if you can put him in a special holiday outfit. A snowman, Santa or elf onesie would be adorable! (But be sure to check with the head nurse or doctor first.)

• Depending on the health of your baby and NICU rules, perhaps Dad can pose as Santa and take a photo with your baby. (Be sure the Santa outfit is squeaky clean please!)

• Place a tiny “Charlie Brown” tree, menorah or other symbolic decoration on the windowsill or counter next to your baby.

• If appropriate, see if you can play soft holiday music when visiting your baby. Humming or singing to your baby may be soothing to him and in this way you can introduce him to his first Christmas Carol or Hanukkah song.

• Make a clay impression of your baby’s foot as a keepsake. There are kits that you can buy that are easy to prepare. Or, if you have a creative streak in you, you can make the “dough” yourself. Search the internet for recipes.

• Enjoy your New Year’s toast together as a family in the NICU with your baby, even if you do it well before midnight to accommodate bedtimes of your other children.

Spending your holidays at the NICU is not something you planned on. But, hopefully, the New Year will be one of improved health, weight gain for your preemie, and a soon-to-be united family at home.

 

Note:  This post is part of the weekly series Delays and Disabilities – How to get help for your child. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also view a Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Visiting Santa is do-able for kids with special needs

Wednesday, December 17th, 2014

child w SantaThe sensory challenges experienced by many children can make a visit with Santa impossible, or at best, uncomfortable. From the noise and crowds of a busy mall, to the waiting on a long line, a fun and fulfilling experience can soon become a very stressful one. The sensory overload can quickly turn the visit upside-down. It is for this reason that a specially trained Santa and a well-planned visit can make all the difference in the world.

The good news

Across the U.S., there are opportunities for kids with special needs to visit Santa in a sensory friendly way. Malls, private organizations such as occupational therapy centers and doctor’s offices, fire stations, and many local disability groups offer programs that feature a specially trained Santa who welcomes children with varying needs. These Santa visits are unhurried, calm, quiet and understanding of the sensory issues of little ones. Parents often say the best part about visiting a sensory special Santa is not having to wait on long lines (which can be an impossible hurdle for many kids with special needs). An advance reservation may be required, so call ahead to learn about any important details that will help your visit go smoothly.

To locate a special Santa, check with the your local mall, town hall, parks and recreation department, fire and police stations, therapy offices, disability organizations, etc., to see if a “Special Santa,” also known as a “Sensitive Santa” or “Caring Santa” is in your area.

If you do see a special Santa, you might want to give the staff a quick heads up about your child’s needs. Or, you can write a short note to give to Santa before your child’s visit. The note can give a brief description of your child (eg. “Johnny is non-verbal but understands if you speak slowly,” or “he wants to tell you something, so please be patient and wait as he gets his words out”). Your note can also state the toys he wants for Christmas, so Santa can mention them and your child can nod in agreement. With a little planning and creativity, the visit can be smooth and successful.

If your child can not leave the house, you may be able to find a Santa that makes home visits. It is worth calling your local disability organization or town government to inquire. If there isn’t a program in your area, perhaps ask a therapist, special education teacher or another parent or relative familiar with your child’s special needs, to transform into Santa and visit your child.

It is a happy time of year, and a calm visit with Santa will undoubtedly make Christmas brighter for your child…and you!

 

Note:  This post is part of the weekly series Delays and Disabilities – How to get help for your child. It was started in January 2013 and appears every Wednesday. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also view a Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.

Toys glorious toys!

Wednesday, December 10th, 2014

playing with toysAt one time, parents did not have many options to find appropriate toys for a child with a disability or developmental challenge. Nowadays, it is possible to find just the right kind of toy for your child’s individual needs. She can play at her own level and be a very happy camper.

What child does not love toys? It seems to me that the word “toy” is synonymous with “child.” It is hard to separate the two. At this time of year, there is a seemingly endless variety of toys available. Yet, for parents of a child with special needs, it can seem hard to find toys that are appropriate for your child’s condition.

Fortunately, a simple internet search for “toys for kids with special needs” will yield multiple sites that feature toys for children with physical or cognitive challenges, speech and developmental delays, hearing or vision impairments, sensory disorders, issues related to autism and learning disabilities. You can find everything from sensory swings to board games with larger print. You will not be at a loss to find the right toy for your little one.

When searching for toys by age group, remember to keep your child’s adjusted age in mind if he was born prematurely. And, see this post for other tips on shopping for toys kids with special needs.

This year, let your fingers do the searching and find the perfect gift for your child with special needs. The hours of fun your child gets from a toy that is right for him will give you hours of joy!

 

Note: This post is part of the weekly series Delays and disabilities – How to get help for your child. It was started in January 2013 and appears every Wednesday. While on News Moms Need, select “Help for your child” on the menu on the right side to view all of the blog posts to date. You can also view a Table of Contents of prior posts.

Feel free to ask questions. Send them to AskUs@marchofdimes.org.