BRACE yourself – The ShareUnion message

01
Oct
Posted by Barbara

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!

Today is World Heart Day

29
Sep
Posted by Lauren

World Heart DayThis year the World Heart Federation is focusing on creating heart-healthy environments for you and your family. World Heart Day raises awareness of maintaining a healthy diet, limiting alcohol and tobacco use, and increasing physical activity.

World Heart Day is a good time to think about one of the most common birth defects – congenital heart defects. It affects 1 in 100 babies every year. These heart defects can affect the heart’s structure, how it works, or both.

Heart defects develop in the early weeks of pregnancy when the heart is forming. Severe congenital heart defects are usually diagnosed during pregnancy or soon after birth. Less severe heart defects often aren’t diagnosed until children are older.

What can you do?

We’re not sure what causes most heart defects, but things that may play a role include diabetes and obesity (being very overweight).

If you are trying to become pregnant or you are currently pregnant:

• Do not smoke

• Do not drink alcohol

• Talk to your provider about any medicine you take, including prescription and over-the-counter medicine, herbal products and supplements

• Maintain a healthy diet and exercise 30 minutes a day if you can

• Go to all your prenatal visits

After birth your baby may be tested for critical congenital heart defects (CCHD) as part of newborn screening before he leaves the hospital. All states require newborn screening, but not all require screening for CCHD. You can ask your provider if your state tests for CCHD or click here to see what your state covers.

After birth, signs and symptoms of heart defects can include:

• Fast breathing

• Gray or blue skin coloring

• Fatigue (feeling tired all of the time)

• Slow weight gain

• Swollen belly, legs or puffiness around the eyes

• Trouble breathing while feeding

• Sweating, especially while feeding

• Abnormal heart murmur (extra or abnormal sounds heard during a heartbeat)

If you see any of these signs, call your baby’s health care provider right away. For more information about congenital heart defects visit our website.

If you have questions, email us at AskUs@marchofdimes.org.

Click here to read more News Moms Need blog posts on: pregnancy, pre-pregnancy, infant and child care, help for your child with delays or disabilities, and other hot topics.

Saturday is Prescription Drug Take-Back Day

26
Sep
Posted by Sara

pillsEvery year hundreds of thousands of children take a trip to the hospital because they have taken medications they have found in their house and are way too easy for them to get their hands on. Often, old prescriptions are sitting around, forgotten, and these pose a risk to children who may find and ingest them.

Saturday, September 27th is National Prescription Drug Take-Back Day. This effort, organized by the Drug Enforcement Administration (DEA), aims to provide a safe, convenient, and responsible means of disposing expired, unused, or unwanted prescription drugs.

Last April, Americans turned in 390 tons (over 780,000 pounds) of prescription drugs.  When those results are combined with what was collected in its eight previous Take Back events, DEA and its partners have taken in over 4.1 million pounds—more than 2,100 tons—of pills.

This event will be held throughout the country from 10am-2pm. You can locate a collection site near you here.

Good-bye NICHCY. Hello CPIR.

24
Sep
Posted by Barbara

waving goodbye or helloLike most people, I am resistant to change. Once I get used to something, I am irked when it is re-arranged or changed, or worse, eliminated. But, today I am writing about a change that made me unhappy at first, but in the end, I feel good about.

In many of my blog posts, I have directed parents to NICHCY (the National Dissemination Center for Children with Disabilities), where hundreds of helpful articles on early intervention, special education, disabilities and the law can be found in an easy to read format. The bad news is that in less than one week, NICHCY’s website will be closed. The good news is that most of the information has been moved to CPIR – the Center for Parent Information and Resources. Thankfully, the valuable information that NICHCY has created over the years will still be accessible on the CPIR site.

I recommend that you go directly to the CPIR page, Quick Find/NICHCY Resources, which links you directly to a roadmap of NICHCY’s topics. You can also access information through their alphabetical listing.

NICHCY’s specialty was helping parents access and navigate the early intervention and special education systems. They have important information on creating an IFSP and IEP. They also offer information on the IDEA (Individuals with Disabilities Education Act) which is the law ensuring that children with delays or disabilities receive a free, appropriate education. You will also find fact sheets on specific disabilities as well as materials in Spanish.

So, as sad as I am to see NICHCY go, I am thrilled that this information is not lost, and it will continue to be kept current by the good folks at CPIR. This is the kind of change that I can bear quite easily.

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!

Health and safety while at work

22
Sep
Posted by Lauren

Pregnant woman at workWorking during pregnancy may have some challenges. It can be difficult to stay safe and comfortable at the workplace, manage your pregnancy symptoms all while tackling your work schedule and duties. Lots of women work long hours at physically demanding jobs. Others may be very sedentary, working at a desk looking at a computer screen for most of the day.  Here are some tips to help make your day safer and easier.

If you work on a computer or sit at a desk for most of the day, comfort is key. To avoid wrist and hand discomforts, neck and shoulder pains, backaches and eye strains, follow these tips:

• Take short breaks often and walk around your office or building.

• Adjust your chair, keyboard and other office equipment to be more comfortable.

• Use a small pillow or cushion for lower back support.

• Keep your feet elevated by using a footrest.

• Be sure to use the correct hand and arm positions for typing.

• Use a non-reflective glass screen cover on your computer monitor.

• Adjust the computer monitor for brightness and contrast to a setting that is comfortable for your eyes.

If you need to lift something, follow these tips:

• Stand with your feet shoulder-width apart.

• Bend at your knees, but keep your back straight and rear end tucked in.

• Use your arms and legs. Lift with your arms (not back) and push up with your legs.

• When possible, lower the weight of the item (for example, break up the contents of one box into two or three smaller boxes).

Standing for long periods of time can also be cause for concern. That’s because blood can collect in your legs, which may lead to dizziness, fatigue and back pain. When standing:

• Place one foot on a small foot rest or box.

• Switch feet on the foot rest often throughout the day.

• Wear comfortable shoes.

It’s important that the work environment around you is safe for you and baby. If you have concerns, speak with your health care provider and your supervisor at work.

Learn more ways to stay safe at work.

Have questions? Email us at AskUs@marchofdimes.org.

Click here to read more News Moms Need blog posts on: pregnancy, pre-pregnancy, infant and child care, help for your child with delays or disabilities, and other hot topics.

Seat check Saturday is Sept. 20

19
Sep
Posted by Sara

car-seat-2September 20 is National Seat Check Saturday. Certified technicians will perform car seat checks and installations at sites throughout the country. There will be car seat inspection sites throughout the country with trained and certified technicians performing car seat checks and installations.

Installing a car seat correctly may be one of the most frustrating aspects of parenthood. It takes a lot of effort and a lot of patience. And then, just as you are getting the hang of it, they outgrow one seat and have to move on to another! Of course, it is very important that your child travel in a car seat that is appropriate for her age, weight, and height and that it is installed in your car correctly. Car crashes are a leading cause of death for children 1 to 13 years old. Many times deaths and injuries can be prevented by proper use of car seats, boosters, and seat belts.

Seat Check Saturday will give you the opportunity to get your car seat installed and inspected by trained technicians. Most inspections sites are free but do require an appointment. You can find a site near you here.

You can also take a look at this car seat check list to make sure your seat is installed correctly. And if you have had a premature baby, take the time to read these special tips.

Heavy backpacks hurt- how to lighten the load

17
Sep
Posted by Barbara

backpacks-150x150Pain and strain. Did you know heavy backpacks can be the cause of posture and back problems? Many children with special needs have musculoskeletal issues. A very heavy backpack may add additional challenges to an already sensitive child.

Yesterday, on my way to work, I noticed a group of kids headed for the bus stop. I could not help but observe their gigantic backpacks, full to the brim, and noticeably heavy. One little girl was struggling to stay upright as she shifted the weight of her backpack from left to right, in an effort to hurry along and catch her bus.

The daily carrying of heavy packs can cause muscle strain and pain, and may lead to back, shoulder or neck injuries. The American Occupational Therapy Association (AOTA) has designated today as National School Backpack Awareness Day. They are holding events in different areas of the country. Even if you don’t make it to a backpack event, it is well worth your time to read AOTA’s tip sheet on Backpack Strategies for Parents and Students.

AOTA offers strategies on how to lighten the load, pack the backpack properly and wear it correctly. For instance, did you know that the pack should not weigh more than 10% of your child’s weight? (If your child weighs 80 pounds, the loaded pack should not weigh more than 8 pounds.) Also, you can make hoisting a pack easier by packing the heaviest items close to your child’s back. Using both shoulder straps is also key to minimizing injuries. Learn more helpful tips on their sheet.

So, help your child “pack it light and wear it right.” You could well avoid injuries and pain with a few simple changes.

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 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!

September is National Childhood Obesity Awareness Month

15
Sep
Posted by Lauren

family playing soccerThere are many things you can do at home to help your child lead an active, healthy life. September provides an opportunity to raise awareness and to get your family moving. Whether your child is at school or home, you can look for ways to maintain a healthy lifestyle for your entire family.

Small changes can make a huge impact. Try things like keeping TVs and computers out of your child’s bedroom or choosing a video game that encourages physical activity instead of one that allows him to sit on the couch. You can also encourage your child to be active by taking a family walk after dinner. Incorporating these small adjustments into your family’s daily routine can make a big difference in your child’s health and well-being.

Things you can do at home:

• Provide plenty of fruits and vegetables, limit foods high in fat and sugars, and prepare family meals at home instead of eating out.

• Serve your family water.

• Pack your child a well-balanced lunch for school.

• Limit computer/TV time to no more than one to two hours hours per day, as recommended by the American Academy of Pediatrics. Less screen time means more play time.

• Try to keep your child on a sleep schedule; sleep loss can lead to fatigue and increased snacking.

• Look for events happening in your community that promote healthy eating or physical activity.

• Talk to your child’s pediatrician if you have concerns. Although they account for very few cases, certain metabolic disorders or hormonal imbalances can cause weight gain.

For more information on what you can do to decrease childhood obesity, visit here.

Have questions? Email us at AskUs@marchofdimes.org.

Click here to read more News Moms Need blog posts on: pregnancy, pre-pregnancy, infant and child care, help for your child with delays or disabilities, and other hot topics.

Why vitamin K is important for your newborn

12
Sep
Posted by Sara

YourBabyRightAfterBirth_rdax_50Your baby will receive a shot of vitamin K soon after he is born. The vitamin K shot protects your baby from developing a rare, serious bleeding problem that can affect newborns.

Babies are not able to make vitamin K on their own and they are born with very small amounts in their bodies. Vitamin K is a very important nutrient which is needed for blood clotting so that bleeding stops. We get vitamin K from food and it is also made by the healthy bacteria that live in the intestines.   However, when a baby is born, his intestinal tract does not have enough healthy bacteria to produce sufficient amounts of vitamin K. Vitamin K is not easily transmitted from mother to baby during pregnancy either. And although he can receive some vitamin K from breast milk, it is not enough.  It takes a while for your baby to start producing his own vitamin K. Therefore, receiving a shot of vitamin K immediately after birth helps your baby’s blood to coagulate and clot. This assists in protecting against possible abnormal bleeding in the body.

If a baby does not receive a vitamin K shot soon after birth, he may be at risk for a condition called Vitamin K deficiency bleeding or VKDB. This occurs when a baby does not have enough vitamin K and his blood cannot clot. Not getting enough vitamin K puts your baby at risk for bleeding into his intestines or even brain. Babies who do not receive the vitamin K shot after birth are actually at risk for VKDB until they are six months old.

Table of contents for the delays and disabilities series

10
Sep
Posted by Barbara

If you are new to this series, or if you want to catch up on posts you may have missed, this is a good way to see all the posts in the series. They are grouped by topic to help you navigate your way.

Table of Contents

Why this blog series?
A new blog series is here

How to get early intervention and special education services
Babies and toddlers:

Understanding developmental milestones and delays
Preemies- adjusted age and delays
Early intervention for babies and toddlers
What is an IFSP?
Guest post from the CDC on early intervention
Don’t delay with delays
How does your state define developmental delay?

Kids ages 3 and older:

Turning 3 – the leap from early intervention to special ed
Early intervention and special ed for children ages 3 and older
What is an IEP?
What are related services?
IEP or 504 – that is the question!
IEP reviews in April
IEPs on TV
April is IEP month
What is Prior Written Notice or “PWN?”
IEPs and LREs – the nitty gritty
An easy way to find resources for kids with special needs
Summer programs for kids with special needs
Delays, disabilities and the law
Learning the lingo
Words and terms – a whole new world
Changing a program for a child with special needs
What is peer-reviewed research?
Keeping track of your child’s records

Pediatric medical specialties

What are pediatric specialties?
Finding pediatric specialists
What is a Developmental Behavioral Pediatrician?
What is a child psychologist?

Therapies and Treatments

What is physical therapy or “PT”?
What is occupational therapy, or “OT”?
What is speech therapy?
What are hippotherapy and therapeutic riding (THR)?
What are recreation services?
Kids with challenges zoom on souped up kiddie cars

Sensory issues

Sensory difficulties in children
Everyday tips for dealing with sensory special kids
Help for sensory issues
Fireworks are not fun for kids with sensitive hearing
Sensory friendly malls

Understanding the diagnosis

Preemies and hearing loss
Did you hear me? What is Auditory Processing Disorder (APD)?
What are learning disabilities (LDS)?
LDs – What they ARE and are NOT
What is dyslexia?
What is dyscalculia?
What is dysgraphia?
What is dyspraxia?

Coping – day in and day out

Medication mistakes are common
It’s good – no, great – to read to your baby
Avoiding and handling tantrums
More resources for handling meltdowns
Positive reinforcement – the power of one M&M’s® candy
Positive reinforcement – fortune cookie advice

Flu can be serious for kids with special needs
Can sleep affect your child with special needs…or you?
A social skills tip for kids with special needs

Apps for math LD and other disabilities
There’s an app for that (for kids with learning challenges)

Getting through transitions, holidays, vacations and disasters

A transition tip
Bracing for the holidays
Holidays :) or :(
Adjusting to life after the holidays
Let it go! Let it go! Let it go! (an inspirational holiday poem)
Vacationing with your child with special needs
Accommodations help vacationers with special needs
Re-entry: life after vacation
Summer to September
From summer to school – the big transition
Back to school is hard on kids and PARENTS!
Shopping for toys for kids with special needs
Preparing for disasters when you have a child with special needs

Surviving and thriving – Your child with special needs, your other children, and YOU

Special moms need special care
Caring for the caretaker – put on your oxygen mask
Caring for the siblings of a child with special needs
Do siblings of children with disabilities need help?
Laughter helps your body, mind and mood
It’s a marathon, not a sprint

You can also see all of the blog posts by clicking on Help for Your Child under “Categories” on the menu. Scroll down to read the blog posts in reverse chronological order. If you have comments or questions, please send them to AskUs@marchofdimes.org. We welcome your input!