Archive for the ‘Help for your child’ Category

Stop. Rest. Relax…Repeat.

Wednesday, April 22nd, 2015

things to do I am not one who can easily relax. Usually, I need a brick wall in front of me to make me stop (or a cliff will do fine, too). Adrenaline runs through my veins. I am continually creating and updating my to-do lists (or as I call them, my must-do lists) and the I-don’t-have-time-to-relax attitude often overtakes me.

Now, I KNOW, that I need to relax, for the sake of good health and a clear mind. I KNOW I need sleep, a healthy diet and exercise. But, when the list of all that needs to be done is before my eyes, or in my hand, or on my phone, I have a very hard time turning away from it and shutting down my mind. Does this happen to anyone else out there?

As parents, we have the responsibility of providing for our children – financially, physically, emotionally and in every other way that they need. Parents of children with special needs face additional tasks to conquer, from appointments with specialists, to IEP meetings, to figuring out a system with continual twists, turns and dead ends. For pregnant women, stress related hormones may play a role in causing certain pregnancy complications. Unless we purposefully have a method or a way to shut off the engine and refuel it, we risk burn-out and ill health.

But, easier said than done.

A few years ago, I took up yoga, as I knew that it offered health benefits. Among the benefits is a curious thing called “mindfulness.” Now, I am a science geek at heart, so the touchy-feely aspect was not really something I gravitated toward. But, I gave it a try anyway. What is this thing called “mindfulness?”

Well, it is a way to help shut out the noise of everything around you (and even your own busy mind), and just…be. At first I was not able to just sit and “be.” Be what? I am a do-er. Not a be-er. But, I kept going to yoga class thinking that there must be something to this, and to just give it time.

relaxing at workEventually, (after about a year!) I got comfortable and even good at sitting down on my mat, crossing my legs, uttering OOOOOOOMMMMMMM a few times, and becoming “present in the moment.” My yoga instructor would say “you have nowhere to be, nothing to do, but to be here, present.” I would concentrate on my breathing (never did that before!), and work on blocking everything out of my mind (much harder than it sounds).

During class, I give myself permission to put the world on hold for an hour. My must-do list will be there when I am done, and my noisy world will return, but for this one hour I honor myself, I rest my mind, I invigorate my body, and I …..relax. What a concept!

When my son was in first grade, he received a writing assignment; the topic was “my favorite thing to do.” He wrote “My favorite thing to do….is to relax. I like to go home, lie on the couch, put my feet up and just watch a movie.” (His teacher was not too happy, as she expected to hear he liked to play a sport or build a Lego creation, but I found it enlightening.) His favorite thing, was letting go, relaxing….just “be”ing. Hmmmm. Kids GET this.

April is Stress Awareness Month, so, as you rush around, going from appointment to appointment, crossing off items on your must-do list, remember that you can only go so far without re-fueling. The stop-rest-relax portion of your day is as important as the go-go-go part. It does not have to be through yoga, but find something that helps you relax your body AND mind. Then, when you pick up and go again, you will be refreshed and able to handle whatever comes your way. Believe me, if I can do it, you can, too.

So, try this as your new mantra for today:  stop – rest – relax.

And tomorrow?

Repeat.

 

For more posts on how to help your child with a delay or disability, view our Table of Contents.

 

Do you know your baby’s different cries?

Wednesday, April 15th, 2015

infant cryingYes…babies cry a lot; but, they cry for a reason. Your baby may be hungry, have a dirty diaper or he may not feel well. He may need to burp, have gas in his tummy, or simply need to be cuddled (which is a really good reason to cry). Crying is the only way your baby can tell you that he needs something. It is his language before he can speak.

Soon you will learn to recognize the differences in your baby’s cries. His cries will not all sound the same. The “I’m tired and need to go to sleep” cry will sound different from the “Ouch – my diaper rash hurts” cry. Likewise, the cries due to hunger will sound somewhat different from the cry when a stranger holds your baby. The more you pay attention to the slight variations in cries, the more you will learn to anticipate and react to your baby’s needs.

Do preemies cry more often than full term babies?

Some studies show that premature babies are more likely to be fussy than babies who are born full term. They may be harder to soothe, cry often, and have trouble eating and sleeping. If your baby is fussy, it may be comforting to know that you are not alone. Some babies who have been in the NICU have trouble getting used to the quiet of home. Your baby may sleep better with some background music or a low level of noise in your home.

Remember to never shake your baby when he cries—this can seriously hurt him. If you can’t soothe your baby or you think he cries way too much, talk to his health care provider. Babies can get sick very quickly and the sooner you seek medical attention, the quicker your baby will get better.

What if your baby cries constantly?

Your baby’s doctor can also tell you if he thinks your baby may have colic, which is intense crying lasting more than 3 hours a day. About 1 in 5 babies develop colic – usually between 1 and 4 months of age. They cry constantly, often extending or pulling up their legs or passing gas. Sometimes their tummies are enlarged with air and gas.

There’s no one cause of colic, but there are many different ways to ease your baby’s discomfort. One way is to walk him in a soft-sided baby carrier that you strap to the front of your body. You can also try laying him tummy-down across your knees and gently rubbing his back. The pressure against his tummy may relieve his discomfort.

Breastfeeding moms can ask their baby’s health care providers about a change in food choices or eliminating specific foods that may cause your baby discomfort. Keep in mind that colic usually disappears by 4 months of age, no matter what treatments you try.

Remember Mom

As important as it is to care for your baby, it is also important to care for yourself. Moms of babies who have colic or are very fussy are often sleep deprived. Enlist the help of your partner, relatives and friends, so that you can take time out to sleep, eat well and even go for a stress busting walk. The time you spend nourishing your body and mind will help give you the patience to deal with your crying baby.

For tips on how to soothe your crying baby, visit us.

For more posts on how to help your child with a delay or disability, view our Table of Contents.

 

Helping babies with FASD

Wednesday, April 8th, 2015

baby in distress

Drinking alcohol during pregnancy can cause your baby to have serious health conditions, called fetal alcohol spectrum disorders (FASD). Alcohol can also cause your baby to:

• Be born too soon (prematurely)
• Have birth defects (heart, brain and other organs)
• Have vision or hearing problems
• Be born at low birthweight
• Have intellectual disabilities
• Have learning disabilities
• Have sleeping and sucking problems
• Have speech and language delays
• Have behavioral problems

What can you do?

The earlier a child is diagnosed with FASD, the sooner interventions can begin, and the child can start making progress. Special services that can help a child with FASD include early intervention, special education, speech therapy, occupational therapy, physical therapy and other services. This blog series can help you learn how to access services for babies and toddlers or children ages 3 and older.

Not all babies born with FASD will experience alcohol withdrawal symptoms. According to Mother-to-Baby, “There are reports of withdrawal symptoms in infants whose mothers consumed alcohol near delivery. Symptoms included tremors, increased muscle tone, restlessness and excessive crying…Once your baby is born, it is also recommended you tell your pediatrician about your alcohol use during pregnancy. Your baby can be evaluated for effects of alcohol exposure. Services and support are available for children with alcohol related problems.”

Additional resources

The FASD Center for Excellence has information, including screening, diagnosing, intervention programs and resources.

The National Organization on Fetal Alcohol Syndrome (NOFAS) has a resource list and several fact sheets that may be very helpful to parents of children with FASD, such as FASD Identification.

March of Dimes’ role

In 1973, March of Dimes grantees were the first to link drinking alcohol in pregnancy with a specific pattern of birth defects and intellectual disabilities they called Fetal Alcohol Syndrome. Since then grantees have continued to study how alcohol harms the developing brain, and to discover better ways to prevent and treat FASDs in alcohol-exposed babies.

Here is more information, including resources on how to quit drinking alcohol. The good news is that FASD is entirely preventable by avoiding alcohol during pregnancy.

If you have questions, please send them to AskUs@marchofdimes.org. View other posts in the Delays and Disabilities: How to get help for your child series, here.

 

IEP season is here

Wednesday, April 1st, 2015

kids at schoolIt’s April. Finally. This was one winter that I thought would never end! The beginning of spring usually signals the start of beautiful weather as well as IEP meetings, if your child is receiving special services. If you are new to this process, read this post to learn about IEPs.

The law says that your child’s IEP must be reviewed every year. Usually, schools start this process in the spring, so that they are all set to start services in the new school year. However, you should know that you can ask for a meeting to review an IEP at any time. You do not have to wait until the spring to review or change your child’s IEP. It MUST be done at least once per year, but it can be done more often, too.

Here are two great resources to help you through the process:
All About the IEP  and What You Need to Know About IEPs & IEP Meetings.

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

You can also view other posts on IEPs in the Delays and Disabilities: How to get help for your child series, here.

Avoid a tragedy – learn safe sleep strategies

Wednesday, March 25th, 2015

cropped sleeping babyEvery so often, we hear a tragic story from a new parent. Last week, a three week old baby died of SIDS (sudden infant death syndrome). This post is in memory of that baby, and our hearts go out to the family.

It is important for parents and caregivers to know safe sleep strategies. Please help us get the word out: ALWAYS, put your baby to sleep on her back, in a crib without bumpers, blankets, stuffed toys or loose bedding.

Back to Sleep and Tummy to Play is an easy way to remember that all healthy babies should be put to sleep on their backs every time until their first birthday. Do not put your baby to sleep on her side, either. Most babies will roll over both ways by the end of the 7th month, but always start them out going to sleep on their backs. You can give your baby tummy time to help strengthen her back muscles when she is awake and you are watching her.

About 4,000 infants (less than one year of age) die suddenly and unexpectedly each year in the United States, according to the CDC. SIDS is the leading cause of death in babies between 1 month and 1 year old. Most SIDS cases happen in babies between 2 and 4 months old. We don’t know what causes SIDS, but certain things can put babies at higher risk:

  • Bed sharing – do not sleep in the same bed as your baby. Sleeping in the same room is suggested, just not the same bed. Bed sharing is the biggest risk factor for SIDS in babies under 4 months of age.
  • Sofa or couch sleeping – do not let your baby sleep on the couch or soft surfaces, including pillows. Nearly 13 percent of infant sleeping deaths are sofa-related.
  • Wearing too many clothes or sleeping in a room that is too hot.
  • Sleeping on her tummy or side.

Read more about safe sleep, mom and baby care and other tips for reducing the risk of SIDS.

If you have questions about putting your baby to sleep, send them to AskUs@marchofdimes.org or ask your baby’s health care provider.

If you or someone you know has lost a baby due to SIDS or an unknown reason, the Pregnancy and Newborn Health Education Center offers bereavement packets to families. Just email us with your mailing address and we will send one to you.

See other topics in the series on Delays and Disabilities- How to get help for your child, here.

Oh to be understood!

Wednesday, March 18th, 2015

child learning to readHelping a child with attention or learning problems is a feat that most parents find intensely challenging. You may know that your child is bright, yet she can’t seem to keep up with her peers at school and is becoming increasingly difficult to manage at home.

Children with disabilities have a hard time expressing their frustrations, as they don’t fully understand what they should be doing. As a parent, you have expectations for your child, but you don’t see what they see. You can’t fully grasp their struggle.

In order to help your child, you first need to have an accurate idea of what she is experiencing. By getting in her shoes, even for a little while, you will develop an appreciation for her struggles, and have a starting point from which to start your journey of setting up interventions.

What if you could see what your child sees?

I’d like to introduce you to a novel web based resource for parents of children with learning or attention issues, called (appropriately) Understood. Developed by a team of professionals from the National Center for Learning Disabilities along with lots of input from parents, they created a digital resource that can show you what your child is “seeing.”

The section entitled “Through your child’s eyes” has simulations to help you understand your child’s struggles with organization, attention, reading, writing or math. Once you can see what your child sees, and feel what she feels, it will help you to find patience when you thought you had none, and find energy to create an appropriate program for her.

When my daughter first went to a school that specialized in teaching children with learning disabilities, one of the exercises the parents had to do was similar to one on this website. Even though it took place many years ago, I remember it to this day. It was eye opening and mind boggling. We parents had NO IDEA our kids were seeing the world the way they were, and were faced with such a huge mountain to climb every day. Many of us felt guilty – we simply did not know the pain our kids were in every day. But, how could we have known? Until we were shown exactly how our kids were struggling, we did not truly understand. Life changed for me after that day. I had a different perspective and attitude about my daughter’s disability, not to mention a newly discovered abundance of patience that I did not know I possessed.

The simulations on Understood will help you to see the world through your child’s eyes, so that you can develop patience, empathy and most importantly an action plan specific to your child’s needs.

For other posts in this series, see the Table of Contents.

Understanding intellectual and developmental disabilities

Wednesday, March 11th, 2015

Raising a child with developmental disabilities is a long road filled with challenges. It is best to have information and support to help you along the way.

Since March is National Intellectual and Developmental Disabilities Awareness Month, it gives us an opportunity to increase understanding about these disabilities, and to get the word out on support services that exist to help families. Equally important is learning how some disabilities can be prevented.

Developmental disabilities (DDs) include a wide group of conditions due to an impairment in physical, learning, language, or behavior areas. About one in six children in the U.S. has a developmental disability or a developmental delay.

DDs are diagnosed during the developmental period or before a child reaches age 18, are life-long, and can be mild to severe. They impact a person’s ability to function well every day.

Developmental disabilities is the umbrella term that includes intellectual disabilities (formerly referred to as mental retardation), which is an impairment in intellectual and adaptive functioning. For example, individuals with intellectual disability may have problems with everyday life skills, (such as getting dressed or using a knife and fork), thinking, understanding, reasoning, speaking and the overall ability to learn. See this fact sheet to learn more.

DDs also include: attention deficit hyperactivity disorder, autism, cerebral palsy, Down syndrome, fetal alcohol spectrum disorders, fragile X syndrome, hearing loss, vision impairment, muscular dystrophy, Tourette syndrome, learning disabilities, among other disorders.

Developmental disabilities may be due to:

• Genetic or chromosomal problems
Premature birth
Exposure to alcohol during pregnancy
• Certain infections during pregnancy

However, in many cases, the cause is unknown.

Some disabilities can be prevented

If you are thinking about becoming pregnant, learn how some disabilities and birth defects can be prevented.

Families need support

This blog series offers lots of resources – check out the Table of Contents for a list of what to do if you suspect your child may have a developmental delay or disability.  The series is updated every Wednesday.

You can also join our online community, Share Your Story, where parents of children with developmental delays and disabilities support one another.

In addition, here are a couple more resources:

The Arc: For people with intellectual and developmental disabilities – For more than 60 years, and with nearly 700 chapters in the U.S., the ARC provides supports and services for people with disabilities and for affected families.

AIDD – According to their website, the Administration on Intellectual and Developmental Disabilities works to advance the concerns and interests of individuals with intellectual and developmental disabilities through an array of programs funded under the Developmental Disabilities Act. AIDD is dedicated to ensuring that individuals with developmental disabilities and their families are able to fully participate in and contribute to all aspects of community life in the United States and its territories.

World BD day gets word out globally

Wednesday, March 4th, 2015

Sick babyThe twitter-sphere was all aglow yesterday for the first-ever World Birth Defects Day. In fact, 6,154,146 people were reached worldwide! Yup. It’s not a typo.

Twelve leading global organizations including the March of Dimes, along with scores of other foundations, hospitals, health care providers, government agencies, parents and individuals with birth defects took to Twitter to raise awareness. People in Australia, Belgium, Brazil, Canada, Chile, England, Germany, Greece, India, Ireland, Italy, Malta, Mexico, Mongolia, Netherlands, Panama, Philippines, Rwanda, Scotland, Spain, Switzerland, Tanzania, Turkey, and individuals from all over the United States participated. As the day progressed, #worldbdday tweets continually popped up on my computer screen. In case you missed it, here is a snapshot of important messages.

Birth defects are surprisingly common

Did you know that every 4 ½ minutes a baby is born with a birth defect in the US?

In the US, about 1 in 5 babies die before their 1st birthday due to birth defects.

Birth defects affect 1 in 33 infants worldwide.

More than 8 million babies worldwide are born each year with a serious birth defect.

There are thousands of different birth defects, and about 70% of the causes are unknown.

The most common birth defects are heart defects, neural tube defects and Down syndrome.

In the US, a baby is born with a congenital heart defect every 15 minutes.

More than 300,000 major birth defects of the brain and spine occur worldwide each year.

Many birth defects are discovered after the baby leaves the hospital or within the 1st year of life.

More than 3.3 million children under 5 years of age die from birth defects each year.

Babies who survive & live with birth defects are at an increased risk for long-term disabilities & lifelong challenges.

Early intervention services may help babies w/ BDs; get your child help by starting early.

Birth defects are costly. Financial and emotional costs of birth defects take a toll on families and communities worldwide.

Learn how to decrease your risk of having a baby with birth defects

Taking folic acid before & early in pregnancy can help to reduce the risk for BDs of the brain & spine.

Smoking during pregnancy is associated with an increased risk of certain BDs. It’s never too late to quit.

We can’t prevent all birth defects. We CAN prevent FASD! (Fetal Alcohol Spectrum Disorders)

FASDs are 100% preventable.

Alcohol can cause your baby to have BDs (heart, brain & other organs). Don’t drink if you are pregnant or trying to conceive.

Being overweight before pregnancy can increase the risk for some birth defects.

Not all BDs are preventable, but women can take steps toward a healthy pregnancy.

Make a PACT: plan ahead, avoid harmful substances, choose a healthy lifestyle, and talk to your doctor.

Raise awareness

Awareness of birth defects & the importance of care for children with these lifelong conditions is key.

The mission of the March of Dimes is to prevent birth defects, premature birth and infant mortality.

March of Dimes has invested more than $50 million in birth defects research in the last 5 years.

Genetics has long been a main theme of March of Dimes research.

MOD grantees have discovered genes that cause or contribute to a number of common birth defects, including fragile X syndrome, cleft lip and palate, and heart defects.

These discoveries pave the way for treatments and preventions for these birth defects.

 

For more information, email AskUs@marchofdimes.org. See other topics in the series on Delays and Disabilities- How to get help for your child, here.

March 3rd is the first ever World Birth Defects Day

Wednesday, February 25th, 2015

WBDD_LogoFamilies frequently write to the March of Dimes and share a story about their child’s struggle with a birth defect. Often, they ask what else they can do to help raise awareness. Well, here is a great way to get involved.

Help us mark the first World Birth Defects Day by participating in social media activities and sharing a story about the impact of birth defects on you and your family.

The March of Dimes and 11 other international organizations, including the CDC and the WHO, have created the first-ever World Birth Defects Day on March 3rd. We hope to raise awareness of this serious global problem and advocate for more prevention, care and research to help babies and children.

Birth defects affect 1 in 33 infants worldwide. Half of these birth defects will be detected soon after birth; the other half will be diagnosed during the first year of life. Birth defects are a major cause of death in infants and young children. Babies who survive are at an increased risk for life-long disabilities.

We need you.

On March 3rd, share your story about the impact of birth defects on you, your child or someone you know. With our partners, we’ll be urging governments, non-governmental organizations, policymakers, researchers, and health care providers around the world to help us work together toward a healthier future for children.

What can you do?

1.  Post an announcement on your blog, Facebook, Twitter or other social media platform.

2.  Register to be a part of the World Birth Defects Day Thunderclap. A message will be sent out at 9:00 a.m. EST on March 3 to help raise awareness.

3.  Join the Buzzday on Twitter on March 3rd. Plan to send one or more messages using the #WorldBDDay tag at some point during the day. Retweet both promotional and day-of messages to build our buzz for the day.

We look forward to having you join the conversation. Together, we can make strides to improve knowledge and raise awareness.

For more information, email AskUs@marchofdimes.org. See other topics in the series on Delays and Disabilities- How to get help for your child, here.

From NICU to EI services

Wednesday, February 18th, 2015

preemie hand in adult handIf your baby was born prematurely or at a low birth weight, chances are he or she may benefit from Early Intervention (EI) services. EI services are designed to help your baby catch up developmentally. They can include speech, physical or occupational therapy, as well as other kinds of treatment.

Usually, the hospital NICU staff will give you the information to have your baby screened or evaluated so that services may begin soon after your baby gets home (if they are needed). But, parents – you should know that a doctor or hospital referral is not needed to start the process of requesting early intervention services. You can contact your state’s agency yourself. Although it is very helpful for hospitals to give parents all of the information they need to get services started early, a hospital referral is not a requirement for a screening.

Read this post on Early intervention for babies and toddlers to learn how to request a screening. In many cases, a phone call to your state’s early intervention program is all you need to initiate an evaluation (which is free of charge to you). EI services are available in every state and territory of the United States.

Don’t delay with delays. The sooner your baby gets help, the sooner he can start catching up. If you are concerned about your baby’s development, make the call, get the free screening, and put your mind at rest.

See other topics in the Delays and Disabilities series here.