Posts Tagged ‘prematurity’

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.

We’re thankful for you

Friday, November 28th, 2014

ESBldg_2014newsdeskHere at News Moms Need, we’re grateful for so many things this year–especially all of you. Thanks so much to all of you who helped us make this year’s Prematurity Awareness Month such a success. Many of you shared your stories with us and others so that everyone could have a better understanding of how premature birth affects us all. We’re very grateful for your energy and support.

To all of you and your families, our thanks and best wishes. And make sure to check out our Facebook page to see images of how World Prematurity Day was celebrated around the globe.

Understanding preemie cues

Wednesday, November 19th, 2014

preemie handFor parents, seeing your little one in the hospital, hooked up to tubes and machines can be scary and overwhelming. We want the best for our children, and it can be unbearable to wonder if your baby is in pain or uncomfortable. Worrying comes naturally, especially when your baby can’t talk and tell you how she is doing. But did you know that babies have certain expressions and behaviors or “cues” that can tell you a lot about how she is feeling? By observing your preemie, she will give you signals that tell you if she is happy, sleepy, in pain, or ready to interact with you.

Learn your baby’s behaviors

Here are a few cues that may help you understand your baby better:

• Happy and content – A calm baby will have relaxed arms, legs and face, stable breathing, an even skin color, and may look around.

• Stressed – Her fingers may splay out wide, she will frown or grimace. Her breathing may increase and her skin become blotchy or pale. She may arch her back or neck, cry and even suddenly become limp or fall asleep.

• Self-soothing – Your baby will try to soothe herself by sucking on her fingers, grasping something (like your finger or a blanket), put her hands on her face or clasp her hands together.

Your preemie’s cues will tell you what she needs. For example, if your baby is stressed, she may be getting too much stimulation. The stimulation can come from too much sound, light or even the combination of being touched AND spoken to at the same time. According to authors Linden, Paroli and Doron in Preemies – the Essential Guide for Parents of Premature Babies, 2nd Edition, “a premature baby is less able to shut out stimuli and to calm herself down after being disturbed.”

What can you do?

Ask the NICU nurse how to comfort your baby. For example, if your baby arches her back, hold back or change your touch. See whether she calms when you cup her head and feet with your hands.

If your baby turns toward you, offer her eye contact or a gentle voice — or both. If she turns away when you talk but toward you when you sing, she’s showing a preference for that kind of voice. Keep in mind that some preemies can only process one stimulus at a time. She may like and respond to touch but not touch in combination with your voice.

Your premature baby’s cues will change as she gets older. As you get to know your baby, you will be amazed at how well you interpret her movements and expressions, and understand how she is feeling or what she wants.

By knowing infant cues, you can learn how to connect with your baby, and respond to her needs. Hopefully, knowing how your baby is feeling will help you to relax and not worry so much.

Source: Preemies- The Essential Guide for Parents of Premature Babies, 2nd Edition, by Linden, Paroli and Doron, 2010.

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 the Table of Contents of prior posts.

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

Time to chat about World Prematurity Day

Friday, November 14th, 2014

globeCome one…come all tweeters for the #WorldPrematurityDay 24-hour Twitter Relay beginning on November 13 at 7 PM EDT and ending November 14 at 8 PM EDT.  Join 28 global partners and friends from around the world, including member organizations from our World Prematurity Network, to commemorate World Prematurity Day and drive awareness to the issue of preterm birth.

The March of Dimes will tweet about preterm birth @modhealthtalk by hosting an hour on November 14 at 1 PM EDT on “Parenting in the NICU.”  Please join us, retweet, offer your tweets about your activities for #WorldPrematurityDay and help us surpass this year’s goal of reaching over 30 million people on Twitter!

Staying positive in the NICU

Wednesday, November 12th, 2014

parents in the NICUHaving a baby in the NICU is stressful. Very stressful. When a baby is born prematurely, the roller coaster ride of the NICU experience is emotionally, physically and mentally taxing for parents.

Premature birth is the birth of a baby before 37 weeks of pregnancy. One in 9 babies is born prematurely, or 15 million babies globally! Of these babies, one million will die. Babies who survive often have lifelong health problems such as cerebral palsy, vision and hearing loss, intellectual disabilities and learning problems. Just knowing these statistics provokes anxiety and worry in parents. If you are a parent with a baby in the NICU, observing the ups and downs of your baby’s progress day to day can be heart wrenching and particularly wearing.

Depression more common in the NICU

Studies have shown that “in the month after delivery, parents of preemies are significantly more depressed and anxious than parents of term babies,” according to Linden, Paroli and Doron MD in the book Preemies – The Essential Guide for Parents of Premature Babies, 2nd Edition. The authors report that “Besides depression and anxiety, they (parents) were more apt to feel hostile, guilty, and incompetent at parenting and to isolate themselves socially…An early delivery is itself so scary that even many parents of healthy preemies react with shock and anxiety.” Given the stress associated with seeing your baby in the hospital, and the ups and downs of slow progress – it is not hard to imagine that depression is seen more often in parents of preemies than in parents of children born at term.

Many new mothers experience the “postpartum blues” or the “baby blues.” Baby blues are feelings of sadness you may have three to five days after having a baby. These feelings most likely are caused by all the hormones in your body right after pregnancy. You may feel sad or cranky, and you may cry a lot. By about 10 days after the baby’s birth, the baby blues should go away. If they don’t, tell your health care provider who will determine if you may have postpartum depression (PPD), which lasts longer and is more serious than baby blues.

Signs of PPD include feeling tired all the time, having no interest in your usual activities, gaining or losing weight, changing your eating habits, having trouble sleeping or concentrating, and thinking about suicide or death. If you have five or more of these signs and they last for two weeks or longer, you may have PPD. Sometimes mothers of preemies develop postpartum depression as a result of the severe stress and anxiety experienced by having a premature baby. Even fathers of preemies can become depressed.

What can help?

There are many ways to feel better.  Treatments for depression may include all or some of the following: healthy eating, regular sleep and exercise, talking with friends, family or a professional counselor/therapist, lowering your stress by taking time to relax and avoiding alcohol. In addition, your health care provider may give you medication specifically designed to help with depression.

Talking to other parents who have gone through the NICU journey can be very helpful. The parents on the March of Dimes’ online community, Share Your Story, “talk” to one another and share their experiences. It is a comforting and supportive community, where all NICU families are welcomed.

When will you feel better?

The length of time a parent feels down, anxious or depressed can vary, and may depend on the health of your baby, and the length of NICU stay. But usually, parents of preemies begin to feel more balanced as their baby grows, and “by the end of the baby’s first year, their psychological distress, on average, has been found to be similar to those of mothers of term babies” according to the Preemies book. But, each baby and NICU stay is unique, so each parent’s journey to feeling better is unique.

Bottom line

Having a baby in the NICU is extraordinarily stressful and difficult. You need to take care of yourself in order to be able to take care of your baby. It is important to be aware of the signs or symptoms of depression and to speak with your health care provider if you have any concerns at all.

The sooner you seek help, the sooner you will feel better.

 

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 the Table of Contents of prior posts.

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

What grade did your state receive?

Friday, November 7th, 2014

2014 report card map

This year we have some great news to report: the national premature birth rate fell to 11.4 percent in 2013 – the lowest in 17 years — meeting the federal Healthy People 2020 goal seven years early. Despite this progress though, the U.S. still received a “C” on the 7th annual March of Dimes Premature Birth Report Card because it fell short of the more-challenging 9.6 percent target.

“Achieving the Healthy People 2020 goal is reason for celebration, but the U.S. still has one of the highest rates of preterm birth of any high resource country and we must change that,” said March of Dimes President Dr. Jennifer L. Howse. “We are investing in a network of five prematurity research centers to find solutions to this still too-common, costly, and serious problem.”

The March of Dimes Premature Birth Report Card compares each state’s premature birth rate to the March of Dimes goal of 9.6 percent of all live births by 2020. On the 2014 Report Card, 27 states and Puerto Rico saw their premature birth rates improve between 2012 and 2013, earning better grades for five of them: Iowa, Virginia, Arkansas, Nevada and Oklahoma. Five states earned an “A,” including California, Maine, New Hampshire, Oregon and Vermont. Twenty states earned a “B,” 20 states received a “C,” two states and the District of Columbia got a “D,” and only three states and Puerto Rico, received an “F” on the Report Card. Click here to see how your state your did.

The Report Card also tracks states’ progress toward lowering their premature birth rates by following three principle risk reduction strategies:
• 30 states and the District of Columbia reduced the percentage of uninsured women of childbearing age;
• 34 states, the District of Columbia, and Puerto Rico reduced the percentage of women of childbearing age who smoke;
• 30 states and Puerto Rico lowered the late preterm birth rate, babies born between 34 and 36 weeks gestation.

Premature birth is the leading cause of newborn death, and babies who survive an early birth often face serious and sometimes lifelong health challenges, such as breathing problems, jaundice, developmental delays, vision loss, and cerebral palsy. Even babies born just a few weeks too soon have higher rates of death and disability than full-term babies.

The March of Dimes is also calling for a nationwide effort to reduce U.S. premature births to 5.5 percent of all live births by 2030.  Seven other developed countries already have premature birth rates below 6 percent, and 15 have rates below 7 percent.  The U.S. rate of 11.4 percent in 2013 is one of the highest.  The U.S. ranked 37th out of 39 high resource countries in 2010.

“The United States spends more money per capita on health care than almost any other country in the world, and yet our premature birth rate and our infant mortality rate are among the highest.” says Dr. Howse.  “The U.S. should aspire to be among the best globally in preterm birth rates and give all our children a healthy beginning.”

BRACE yourself – The ShareUnion message

Wednesday, October 1st, 2014

BRACE yourself poseBRACE yourself for your new normal. This is the acronym that keynote speaker Kevin Bracy imparted to dozens of women at the 10th annual ShareUnion in Phoenix, Arizona. ShareUnion (SU) is the annual gathering of members of Share Your Story, the online community of the March of Dimes, where parents reach out and support one another. This year’s theme was “Finding your new normal.”

The well-known motivational speaker inspired the women who face daily struggles associated with prematurity, infant loss, or raising a child with a developmental delay or disability. The speaker himself is no stranger to loss or the long term effects of prematurity. He and his wife, Jessica, have a 13 year old son who was born at 28 weeks gestation and suffers from significant challenges. Nine years ago, the Bracys lost a son who was born at just 22 weeks gestation. They also have a 21 year old daughter who is healthy. The Bracys embody the mission of the March of Dimes. Jessica has been a Share Your Story member for years, and sent her positive vibes to the group via her husband.

Bracy’s messages are universal, but they are best embraced by anyone who is faced with a constant struggle. His first message, BRACE yourself, (while crossing your arms over your chest with your hands in fists) is meant to help lift you up when you are feeling overwhelmed.

BRACE yourself stands for:

B – Be good to yourself – Be kind to yourself.
R – Regroup and refocus when you need to, especially when your life seems to be getting out of control.
A – Attitude – Always be attitude conscience. Let the “inner you be expressed by the outer you.”
C – Cause centered – Focus on the important people and things in your life.
E – Embrace change. Don’t fight it. Adapting will make your life better.

Accept, adapt and embrace your new normal. Don’t “go through” your challenges, “grow through them” Bracy says. For many SU moms, this advice resonated as they face the daily struggles of caring for a child with special needs as well as themselves and their families.

Mouth over mind – Bracy’s 2nd message

“When the mind goes negative, the mouth goes positive” Bracy explained. He recounted that the great fighter Muhammad Ali would talk out loud to himself before a fight. Ali would say he was the best and he was going to win. He spoke out loud to himself because he believed that his mind could talk his body into greatness. Bracy recommended that when your mind starts thinking of negative scenarios, quickly talk out loud, positively, and it will change the direction of your thoughts. Your mind can’t be negative if you are talking positively. By speaking out loud, you switch off your negative thoughts. Bracy then proved his point through a group exercise. Powerful stuff.

For families affected by prematurity, infant loss, disabilities or birth defects, Bracy’s messages were uplifting and inspiring. “Win the day, one day at a time” he concluded. Judging by the standing ovation he received, everyone became a winner that day.

 

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.

If you have comments or questions, please send them to AskUs@marchofdimes.org. We welcome your input!

Preemies and hearing loss

Wednesday, July 30th, 2014

baby's earNearly 3 in 1,000 babies (about 12,000) are born with some kind of hearing loss in the United States each year. Most babies get their hearing checked as part of newborn screening before they leave the hospital. Newborn screening checks for serious but rare conditions at birth.

If your baby doesn’t pass his newborn hearing screening, it doesn’t always mean he has hearing loss. He may just need to be screened again. If your baby doesn’t pass a second time, it’s very important that he gets a full hearing test as soon as possible and before he’s 3 months old.

The risk of hearing loss is significantly higher in babies born with a very low birth weight (less than 1500 grams). However, hearing loss can be caused by other factors, such as genetics, family history, infections during pregnancy, infections in your baby after birth, injuries, medications or being around loud sounds. See our article  to learn more about the different causes of hearing loss.

Possible treatments

Different treatments are available depending on your child’s level of hearing loss, his health, and the cause of the hearing loss. They include medication, surgery, ear tubes, hearing aids, cochlear implants, learning American Sign Language and receiving speech therapy.  The article on our website discusses each of these types of treatments.

If a child needs speech therapy, it can usually be provided through the early intervention program for babies and toddlers. Read this post to understand how to access services. The sooner your child gets help, the sooner language skills will emerge and improve.

If you need more detailed information, check out these sites:

Early Hearing Detection and Intervention (EHDI) Program

Individuals with Disabilities Education Improvement Act 2004 (IDEA 2004)  

Hearing loss treatment and intervention services

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 and click on “Help for your child” in the Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). We welcome your comments and input.

 

Preemies- adjusted age and delays

Wednesday, June 4th, 2014

toddler with pig tailsAll babies develop at their own rate. But there is a special way to determine if premature babies are developing as they should.

Babies who are born prematurely have two ages: chronological and adjusted.  Chronological age is the age of your baby from the day of his birth—the number of days, weeks or years old that your baby has been in the outside world.  Adjusted age is the developmental age of your baby based on his due date (when he would have been born).

To calculate adjusted age, take your premature baby’s chronological age and subtract the number of weeks your baby was premature.  For example, a baby who has a chronological age of 10 weeks but was born 4 weeks early has an adjusted age of 6 weeks. (10 – 4 = 6)

Why is this important?

Since so much of a baby’s growth and development takes place during pregnancy, babies who are born prematurely miss out on valuable developmental time. As a result, they may lag behind other babies who share their actual birthday. Health care providers may use your baby’s adjusted age when they evaluate your baby’s growth and development.

An infant who is 12 months old but was born 2 months early (and consequently has an adjusted age of 10 months) should not be compared to other 12 month old babies. Instead, he should be compared to other 10 month old babies. Then, his growth and development will seem more in line with typical developmental milestones.

Measuring delays

As your child grows, it may become awkward to constantly have two ages. Hopefully, as time passes, he will begin catching up to his chronologically same-aged peers. Some preemies catch up completely; others have delays or developmental issues that last for years. No two children are exactly alike. But, if you understand that your preemie should be evaluated based on his adjusted age (especially in the early months/years of his life), then it becomes easier to determine if he is delayed and if he is making timely progress.

You can learn more about developmental milestones in preemies by watching our video.

Get help early

If your child is not meeting his developmental milestones or is at risk of having a delay, specialists may be needed to help optimize your baby’s progress. Just as a person may need physical therapy to improve movement after an injury, a toddler who was born prematurely may need physical therapy to help him learn to move or walk. Many preemies have vision or hearing problems which may cause speech difficulties; the help of a speech therapist can make all the difference in helping him learn to talk. Likewise, through the help of an occupational therapist your child may overcome many challenges associated with the different aspects of daily life – from feeding and sitting in a chair to socializing.

Fortunately, in the United States, the Early Intervention program is there to help babies and toddlers who are experiencing developmental delays. Read this blog series to learn how to access this system and help your child get off on the right foot. If you suspect that your child is struggling or is delayed, it is best to get help as soon as possible – don’t delay with delays.

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 and click on “Help for your child” in the Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). We welcome your comments and input. If you have questions, please send them to AskUs@marchofdimes.org.

 

What is dyscalculia?

Wednesday, March 19th, 2014

math bead boardPrior blog posts have focused on the different kinds of learning disabilities (LDs) that often affect preemies (as well as children born full term). Today’s post focuses on a learning disability in math, also known as dyscalculia. Although it is not noticeable in babies or toddlers, your preemie may still be affected by this kind of LD, so it is good to know about it and keep an eye out for warning signs.

Every child has strengths and weaknesses when it comes to learning. But some have more intense problems (learning disabilities) in a particular area such as reading (dyslexia), writing (dysgraphia) or math. For my daughter, her most difficult struggle was in math. “I hate math! Why do I have to do this?!”  I can’t tell you how many times I heard these words from my daughter. I can’t say I ever loved math, but I just didn’t understand the intensity of her dislike. But once she was diagnosed (through testing) with a math LD, it all became clear to me.

What is a math disability?

The experts at NCLD (National Center for Learning Disabilities) explain it best: “Individuals with dyscalculia have significant problems with numbers: learning about them and understanding how they work. Like other types of LD, the term dyscalculia does not capture the specific kinds of struggle experienced in such areas as math calculations, telling time, left/right orientation, understanding rules in games and much more.”

Dyscalculia is not a one-size-fits-all disability. There are varying degrees (mild to severe) and various kinds of math difficulties that may be present. No two kids with dyscalculia are exactly alike.

Similar to the other kinds of LDs, dyscalculia does not go away. Your child will not “outgrow it.” It is a lifelong disability; however, it CAN be managed. With the right kind of teaching methods, supports and/or accommodations, your child with dyscalculia CAN learn math.

Early warning signs of a math learning disability include difficulty…

• recognizing numbers or symbols

• remembering your phone number

• counting

• sorting items

• recognizing patterns of numbers

Later warning signs include difficulty…

• telling time

• knowing left from right

• estimating

• visualizing a number line

• counting by 2’s, 3’s, etc.

• reading a map

• memorizing multiplication facts

• counting change

• keeping score in a game

• experiencing intense anxiety when doing any kind of math work in school or at home

• retaining information (learning a concept one day but not recalling it the next)

• understanding word problems

• understanding formulas

See NCLD’s warning signs by age (from young children through adults).

Is a math LD common?

Although you may never have heard of dyscalculia, the NCLD reports that it is the next most common form of learning disability after dyslexia. As many as one in every seven kids may have a math learning disability.  That’s a lot of kids!

What can help your child?

Knowing what kind of learner your child is can make a huge difference. For instance, if your child learns best through visual and kinesthetic teaching, then seeing and touching/feeling or manipulating math items will be the best way for her to learn a concept. If a child learns best through auditory modes, then be sure that the teaching method includes verbal instructions. Many kids with LD (like mine) learn best through a combination approach – visual, kinesthetic and auditory. Attack the senses from all angles to help her understand and internalize the information presented.  The good news is that once she learns the concept the way her particular brain learns, she is unlikely to forget the information. (Yay!) Here are other strategies that may help:

• Getting extra time on tests or eliminating timed tests

• Using manipulatives (such as a bead counting board, magnets in the shape of numbers, or any other kind of object that your child can touch, hold, feel and work with.)

• Drawing pictures of word problems

• Using assistive technology (such as a calculator or a specialized math computer program)

As with other LDs, getting a clear diagnosis is key in knowing how to help your child. You can either ask the school district to test your child, or have her see a specialist for private testing. Once you have the results you will know where to focus treatment. NCLD has a full page of resources that may help.

Keep in mind that a child with a math learning disability may also have dyslexia or dysgraphia or other disorders that complicate learning. When this occurs, it becomes even more challenging for your child to learn. For instance, how can a child do a math word problem when she struggles with reading and understanding language? For this reason, getting help as early as possible and monitoring progress is very important.

Bottom line

Usually, a learning disability in math can be managed successfully. It takes getting the proper diagnosis as early as possible, getting the right program in place, continually advocating for your child, and providing plenty of positive reinforcement.

Have questions? Send them to AskUs@marchofdimes.org.

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. Go to News Moms Need and click on “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). As always, we welcome your comments and input.