It’s a marathon, not a sprint

20
Aug
Posted by Barbara

roller-coaster-rideAll children have their highs and lows. I once saw a doctor for my daughter who told me that for children with special needs, the extremes are going to be more extreme. At first I had no idea what he meant, but as my daughter got older I understood.  The typical ups and downs of childhood had higher highs and lower lows.

The lows

It is hard to watch your child be frustrated because she can’t do the things that her peers can do. Your child’s frustration may take the form of crying, meltdowns or sadness (depending on your child’s age). When you stop to think about it, it seems very reasonable. Adults react much the same way. But, with toddlers or children, they don’t have the maturity to understand their condition, or the patience to wait until they acquire certain skills. In many cases, they may never acquire the same skills as their peers. Thus, the lower lows.

Along with the lower lows come the “two steps forward and one step back” type of progress that is so common among children with special needs. This is so frustrating – for a parent and especially for the child. You tend to feel like you are on a roller coaster ride – no sooner do you get up in the air and are so happy about progress, when you take a bit of a plunge and feel low again.

The highs

On the flip side, the highs are much higher. When your child achieves a milestone that she had been struggling with (that comes easily to her siblings or her peers), the happy dance is much more jubilant! You celebrate each and every accomplishment, no matter how small. The small steps are big steps to a child with special needs. In fact, every step is a big step. The joys of watching your child inch forward has a much more intense meaning.

Progress is a wiggly line

What has helped some of the parents I know who have children with special needs is realizing that it is a marathon, not a sprint. You need to pace yourself and look at this as one long journey. You may get lost or a little off track now and again, and even need to take breaks to re-fuel or get new directions. But, overall, you will stay on your path and get to your child’s unique destination…eventually. It is important to remember that you need to look at progress as a kind of wiggly line. Look at the overall progress, not minute to minute progress.

Bottom line

Remember that this path has its uniqueness and gifts, too. After all, if we were all the same, this world would be so boring. Try to look past what your little one can NOT do, and focus on what she CAN do. Then, all of the prospects for her future brighten up considerably.

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. As always, we welcome your comments and input.

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

Do you have your measles vaccination?

18
Aug
Posted by Lauren

vaccinationMeasles is a disease that is easily spread and causes rash, cough and fever. In some cases, it can lead to diarrhea, ear infection, pneumonia, brain damage or even death. Measles spreads through the air by breathing, coughing or sneezing. It is so contagious that any child who is exposed to it and is not immune will most likely get the disease. Measles can cause serious health problems in young children. It also can be especially harmful to pregnant women and can cause miscarriage or premature birth.

This year the U.S. is experiencing a record number of measles cases. The Centers for Disease Control and Prevention (CDC) states that between January 1 and August 1, 2014, there have been 593 confirmed measles cases reported. This is the highest number of cases since the U.S. declared that measles was eliminated from this country in 2000.

The majority of the people who get measles are unvaccinated. Children under 5 and adults over 20 are at higher risk for getting complications from the measles virus, including hospitalization and death.

The measles, mumps and rubella (MMR) vaccine protects against the measles disease, as well as the mumps and rubella diseases. Your baby gets the MMR vaccine in two doses: the first between 12 and 15 months, and the second between 4 and 6 years.

If you’re thinking about getting pregnant, make sure you’re protected against measles. If you need to get vaccinated, get the MMR vaccine before pregnancy. Wait at least 1 month before trying to get pregnant after getting the shot. The MMR vaccine is not recommended if you are already pregnant.

To read more about vaccines before, during and after pregnancy, click here.

If you have further questions on measles or vaccines, feel free to 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.

Eye care for your child

15
Aug
Posted by Sara

baby-eyesTaking care of your eyes is very important at all ages. Visual information helps children develop and to process the world around them from the time they are babies. Difficulty seeing can result in problems in learning as well as relating to the outside world. Most vision problems can be treated and corrected, but it is important to identify them as early as possible.

The American Academy of Pediatrics (AAP) as well as the American Academy of Ophthalmology recommend regular vision checks:

Newborns
The first vision exam should occur before your baby even leaves the hospital nursery. Newborns should have their eyes checked for infections, structural defects, cataracts, or congenital glaucoma.

Premature infants will need a special eye exam done by a pediatric ophthalmologist. A pediatric ophthalmologist is an eye doctor trained and experienced in the care of children’s eye problems.  Preemies are at risk for a condition called retinopathy of prematurity (ROP). ROP happens when a baby’s retinas don’t fully develop in the weeks after birth. The retina is the nerve tissue that lines the back of the eye. ROP usually affects both eyes. If your baby has ROP, getting treatment right away is very important.

Six months
Pediatricians should screen infants during their well-baby check-ups to make sure they have proper eye alignment. This means that their eyes are working together. They should continue to look for signs of eye disease.

Three to four years
At this age, both the eyes and vision should be examined by your child’s health care provider for any abnormalities that may cause a problem with educational development. Concerns will result in a referral to a pediatric ophthalmologist.

Five years and older
Regular screening of visual acuity and other eye functions should be completed every year during the well-child exam. The visual acuity test is used to determine the smallest letters you can read on a standardized chart or a card held 20 feet away. There are other ways to check vision in very young children if they do not yet know their letters or numbers.

Although routine eye exams are important, as a parent you may notice signs that your child is having difficulty seeing. According to AAP, some of the signs that a child may have a vision problem include:
• sensitivity to light
• poor focusing and poor visual tracking (following an object)
• abnormal alignment or movement of the eyes (after 6 months of age)
• persistent (lasting more than 24 hours) redness, swelling, crusting, or discharge in the eyes
• excessive tearing of the eyes
• frequent squinting
• drooping of one or both eyelids
• pupils (the center circle of the eye) of unequal size
• eyes that “bounce” or “dance”
• inability to see objects unless they are held close
• a white pupil instead of black in one or both eyes
• any cloudiness in the eye

If you notice any of these symptoms, make sure you contact your child’s health care provider right away. If caught early, many eye problems can be treated and corrected.

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.

From summer to school – the big transition

13
Aug
Posted by Barbara

preschool classThe transition from summertime to the school year can be a daunting one for any child. For a child with special needs, it can be especially difficult. And, for her parents, this journey can be very stressful and anxiety provoking. Whether your child is returning to preschool or elementary school, there is so much to think about.

In two prior blog posts, I shared tips on how to survive the transition from summer to school, especially if your child has trouble transitioning from one activity to another in his daily life:

•    Re-entry: life after vacation will help you cope with the changes of re-establishing your “old” routine after having been away on vacation. Creating a memory book to document last year’s successful transition to preschool/school will help your child realize that he can do this…again.

•    Summer to September covers topics such as meeting the teacher, changing bedtime hours slowly, making medication adjustments, and learning to cut YOURSELF some slack. If your child has an IFSP, IEP or 504, it is very helpful for your child to meet her teacher and for you to hold planning meetings before school starts. It is also helpful for your child to visit the classroom.

Here are some other ideas to help ease the transition.

Create a “cheat sheet”

The first week of school is hard on teachers, too. One teacher may have 25 students to get to know. To help ease the transition for your child, and to keep it manageable for her teacher, create a “cheat sheet.” This short page of bullets will describe your child’s toughest challenges, and what the teacher can do to help ease the transition. Depending on whether your child has a formal diagnosis, an IEP or a 504 plan, or if she is just extra sensitive to change and transition, a “cheat sheet” can help your child’s teacher deal with the rough patches during the first week of school. It should include certain triggers and the most obvious areas of difficulty.

For example, if your child has sensory issues and hates sudden loud sounds, you might have a bullet that says “Diana has a hearing sensitivity. The popping of balloons, sound of fire drills or kids screaming will cause her to put her hands over her ears or cower underneath her desk.”

Likewise, if your child needs extra time to process speech, you can say “Speak directly and slowly to Diana and wait for her to process your words before expecting her to reply to you. If Diana is quiet, she is processing your sentences. She needs extra time to understand all of your words.”

Keep the page short, with just the most important items listed in bullet form. You want the teacher to be able to know the most important tips without having to read pages and pages about your child. Then, follow-up later in the week and ask for an appointment to have a conversation.

Use a communication journal

Often parents and teachers use a daily communication journal to discuss your child’s day. The teacher or classroom assistant jots down any issues (or achievements) that occurred that day. It is a way for you to learn about your child’s day without depending on your child to tell you. You can then add your own comments about homework issues, sleep problems (which may affect mood or attention span the next day), or achievements that occurred at home. Communication journals are often a part of an IEP, so that both the parent and teacher are fully aware of a child’s day/evening, which will take the guesswork out of figuring out why your child is acting in a particular way. A journal can be a way of identifying small problems before they become big ones.

Be patient

It may sound obvious, but patience is paramount. Heading to school is very, very hard for a child with special needs. The changes in routine, scenery, friends and personalities is a lot to take in! Your child may hold it together while at school and then have an enormous meltdown the moment she gets home. Try to understand that she is coping as best she can and try to have patience.

Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started on January 16, 2013 and appears every Wednesday. Click on “Help for your child” and scroll down to view all of the blog posts to date. As always, we welcome your comments and input.

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

Depression during pregnancy: what you need to know

12
Aug
Posted by Sara

sad woman with coffee mugDepression is a serious medical condition. It is an illness that involves the body, mood and thought. It affects the way a person feels about themselves and the way they think about their life. So many people were shocked and saddened by the news about Robin Williams. But unfortunately, depression is far more common than many of us realize. And regrettably, many people still feel that depression is a sign of weakness and do not recognize it as the biological illness that it is.

As many as 1 out of 5 women have symptoms of depression during pregnancy. For some women, these symptoms are severe. Women who have been depressed before they conceive are at a higher risk of experiencing depression during pregnancy than other women.

Signs of depression
Depression is more than just feeling sad or “blue.” There are physical signs as well. Other symptoms include:
• Trouble sleeping
• Sleeping too much
• Lack of interest
• Feelings of guilt
• Loss of energy
• Difficulty concentrating
• Changes in appetite
• Restlessness, agitation or slowed movement
• Thoughts or ideas about suicide

It may be hard to diagnose depression during pregnancy. Some of its symptoms are similar to those normally found in pregnancy. For instance, changes in appetite and trouble sleeping are common when you are pregnant. Other medical conditions have symptoms similar to those of depression. A woman who has anemia or a thyroid problem may lack energy but not be depressed. If you have any of the symptoms listed, talk to your health care provider.

Treatment options
Since depression is a serious medical condition, it poses risks for you and your baby. But a range of treatments are available. These include therapy, support groups and medications.

It is usually best to work with a team of health care professionals including:
• Your prenatal care provide
• A mental health professional, such as a social worker, psychotherapist or psychiatrist
• The provider who will take care of your baby after birth

Together, you and your medical team can decide what is best for you and your baby.

If you are on medication and thinking about getting pregnant, talk to your doctor. You will need to discuss whether you should keep taking the medication, change the medication, gradually reduce the dose or stop taking it altogether.

If you are taking an antidepressant and find that you are pregnant, do not stop taking your medication without first talking to your health care provider. Call him or her as soon as you discover that you are expecting. It may be unhealthy to stop taking an antidepressant suddenly.

If you or someone you know is experiencing any signs of depression, please talk to your health care provider or someone you trust. Help is available and you can feel better.

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.

Breastfeeding a baby with a cleft lip/palate

11
Aug
Posted by Lauren

mom loving babyA cleft lip is a birth defect in which a baby’s upper lip doesn’t form completely and has an opening. A cleft palate is a similar birth defect in a baby’s palate (roof of the mouth). A baby can be born with one or both of these defects. If your baby has a cleft lip, a cleft palate, or both, he may have trouble breastfeeding. It is normal for babies with a cleft lip to need some extra time to get started with breastfeeding. If your baby has a cleft palate, he most likely cannot feed from the breast. This is because your baby has more trouble sucking and swallowing. You can, however, still feed your baby pumped breast milk from a bottle.

Your baby’s provider can help you start good breastfeeding habits right after your baby is born. The provider may recommend:

• special nipples and bottles that can make feeding breast milk from a bottle easier.

• an obturator. This is a small plastic plate that fits into the roof of your baby’s mouth and covers the cleft opening during feeding.

Here are some helpful breastfeeding tips:

• If your baby chokes or leaks milk from his nose, the football hold position may help your baby take milk more easily. Tuck your baby under your arm, on the same side you are nursing from, like a football. He should face you, with his nose level with your nipple. Rest your arm on a pillow and support the baby’s shoulders, neck and head with your hand.

• If your baby prefers only one breast, try sliding him over to the other breast without turning him or moving him too much. If you need, use pillows for support.

• Feed your baby in a calm or darkened room. Calm surroundings can help him have fewer distractions.

• Your baby may take longer to finish feeding and may need to be burped more often (2-3 times during a feed).

• It may help to keep your baby as upright as possible during his feeding. This position will allow the milk to flow into his stomach easier, which will help prevent choking.

How breastfeeding can help your baby:

• His mouth and tongue coordination will improve, which can help his speech skills.

• His face and mouth muscles will strengthen, leading to more normal facial formation.

• If your baby chokes or leaks milk from his nose, breast milk is less irritating to the mucous membranes than formula.

• Babies with a cleft tend to have more ear infections; breast milk helps protect against these infections.

If your baby is unable to breastfeed: 

• Feed your baby with bottles and nipples specifically designed for babies with clefts. Ask your baby’s health care provider for recommendations.

If you are concerned if your baby is getting enough to eat, or if he is having trouble feeding, speak with a lactation counselor, your baby’s provider or a nurse if you are still in the hospital.

If you have any questions about feeding your child with a cleft lip or palate, email us at AskUs@marchofdimes.org.

 

Vaccinations protect against HPV

08
Aug
Posted by Sara

immunizationsHuman papillomavirus (HPV) is a common virus that is spread through sexual contact. There are about 40 types of HPV. Some types of HPV cause genital warts in both men and women. Others can increase a woman’s chance of cervical cancer and can cause other types of cancer in both men and women. However, a vaccine is available that can help prevent HPV infection.

HPV is a sexually transmitted disease (STD). Sexually transmitted diseases are infections that you can get from having sex with someone who is infected. You can get a STD from vaginal, anal or oral sex. HPV is the most common sexually transmitted infection in the United States. According to the CDC, “HPV is so common that nearly all sexually active men and women get it at some point in their lives.” At this time, about 79 million Americans are infected with HPV and approximately 14 million people become infected each year.

In most cases, HPV goes away on its own and many people do not know they were ever infected. If HPV does not go away, however, then it is possible to develop genital warts or cancer. Unfortunately there is no way to know if you will develop cancer or other health problems if you have HPV.

Get vaccinated
One of the easiest ways you can reduce your risk of getting HPV is to get vaccinated. Two vaccines against HPV are available in the US. The vaccines are recommended for girls and boys between the ages of 11 to 12 years old.  Vaccination is also recommended for teen girls and young women through age 26 and teen boys through age 21, if they did not get the vaccine when they were younger.

Both vaccines protect against the two types of HPV that cause most cases of cervical cancer. One vaccine also protects against two additional types of HPV that cause most genital warts. The HPV vaccine is not recommended during pregnancy.

If you have HPV and get pregnant, you can get genital warts or develop abnormal cell changes on your cervix. These changes can be found during routine cervical cancer screening, such as a Pap smear. At your first prenatal checkup, your doctor will do a Pap smear to check for cervical cancer and other tests for vaginal infections.

Laughter helps your body, mind and mood

06
Aug
Posted by Barbara

woman laughing“I love to laugh.” That is a famous line in the movie Mary Poppins.  It is sung by the character Uncle Albert, who is floating on the ceiling due to his incessant laughing. The very image of the scene makes me laugh. Over the years, there have been some studies that show laughter is good for you. The more you laugh, the happier you may be – just like the song says.

Here are some of the lyrics:

I love to laugh
Loud and long and clear
I love to laugh
It’s getting worse every year

The more I laugh, the more I fill with glee
And the more the glee
The more I’m a merrier me
The more I’m a merrier me

(Songwriters Richard Sherman; Robert Sherman, Published by Wonderland Music Company, Inc.)

How does laughter help?

In my post last week, I mentioned how moms of kids with special needs need special care. The chronic stress and pressure associated with caring for a child with multiple needs can take an enormous emotional, physical and mental toll. Taking frequent breaks or respites, keeping up with hobbies, exercise and friendships can help to restore balance in your world. And, frequent laughter is being shown to have many benefits, too.

Laughter can lift your mood. It can lower the stress hormone cortisol and release endorphins and dopamine (which make you feel happy). It can ease tension in your muscles. Laughter can increase blood flow which helps with cardiovascular health, and lower your blood pressure. It may even help improve short term memory. That’s a lot of health benefits from a fit of laughter.

How much is enough?

It appears from the research that just 20 – 30 minutes of viewing a funny video or TV show can have a positive effect on your body and mind. There is no known downside to laughing – no contraindications. It is easy to laugh and can make you feel better instantly. It is an inexpensive, fun way to lift your spirits.  And, science is showing that it has real physiological benefits.

So, why not give it a try today – click on a favorite video or TV show for a while, fill with glee, and become a merrier 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 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.

Breastfeeding your baby in the NICU can be challenging

04
Aug
Posted by Lauren

feeding in the NICUMost babies, even those born very premature can learn to breastfeed. Breast milk provides many health benefits for all newborns, but especially for premature or sick babies in the NICU. Feeding a preemie may be much different than what you had planned. If you must pump, you may feel disappointed that you are not able to feed your warm baby on your breast. But, providing breast milk for your preemie is something special and beneficial that you can give him.

Here are tips to help you breastfeed your preemie while in the NICU.

If your baby is unable to feed or latch:

• Start pumping as soon as you can to establish your milk supply. Ask a nurse for a pump and assistance.

• If your preemie is tube feeding, your baby’s nurse can show you how to give your baby his feedings.

• Pump frequently, every 2 to 2-1/2 hours around the clock for a couple of days and nights (or 8 to 12 times during the day, so you can catch some sleep at night).

• Practice skin to skin or kangaroo care if your nurse says it is ok. Both are beneficial, even if your baby is connected to machines and tubes.

If your baby is able to suckle:

• Ask to feed him in a quiet, darkened room, away from the beeping machines and bright lights.

• Many mothers find the cross cradle position very helpful for feedings. Start with kangaroo care. Then position the baby across your lap, turned in towards you, chest to chest. Use a pillow to bring him to the level of your breast if you need to.

• Preemies need many opportunities at the breast to develop feeding skills regardless of gestational age. This requires practice and patience.

• You may need increased support to breastfeed your preemie. Look for support from your nurses, the hospital’s lactation consultant, friends or family.

Not every tip will work for every mom. Try to find the feeding methods and solutions that work best for you and your preemie. More information on how to feed your baby in the NICU can be found here.

If you have questions about how to feed your baby, email us at AskUs@marchofdimes.org.

Vaccinations before, during and after pregnancy

01
Aug
Posted by Sara

vaccine1If you are pregnant or planning a pregnancy, it is very important to make sure that you are up-to-date on all of your vaccinations. Vaccines help protect your body from infection. You pass this protection to your baby during pregnancy. This helps keep your baby safe during the first few months of life until he gets his own vaccinations.

Vaccinations also protect you from getting a serious disease that could affect future pregnancies. You probably got vaccinations as a child. But they don’t always protect you for your entire life. Or there may be new vaccinations that weren’t available when you were young. Over time, some childhood vaccinations stop working, so you may need what’s called a booster shot as an adult.

Before pregnancy

Here are some vaccines that are recommended before pregnancy:

• Flu. Get the flu shot once a year during the flu season (October through May). It protects you and your baby against both seasonal flu and H1N1, a kind of flu that spread around the world in 2009. If you come down with the flu during pregnancy, you’re more likely than other adults to have serious complications, such as pneumonia.

• HPV. This vaccine protects against the infection that causes genital warts. The infection also may lead to cervical cancer. The CDC recommends that women up to age 26 get the HPV vaccine.

• MMR. This vaccine protects you against the measles, mumps and rubella. Measles can be harmful to pregnant women and cause miscarriage.

• Tdap. This vaccine prevents pertussis (also called whooping cough). Pertussis is easily spread and very dangerous for a baby. If you’re thinking about getting pregnant, ask your provider about getting the Tdap vaccine.

• Varicella. Chickenpox is an infection that causes itchy skin, rash and fever. It’s easily spread and can cause birth defects if you get it during pregnancy. It’s also very dangerous to a baby. If you’re thinking about getting pregnant and you never had the chickenpox or the vaccine, tell your provider.

During pregnancy

The Centers for Disease Control and Prevention (CDC) recommends two vaccinations during pregnancy:

1. Flu vaccine if you weren’t vaccinated before pregnancy

2. Tdap vaccine during each pregnancy at 27 to 36 weeks

Not all vaccinations are safe to get during pregnancy. Do not get these vaccines during pregnancy:

• BCG (tuberculosis)

• Memingococcal

• MMR

• Nasal spray flu vaccine (called LAIV). Pregnant women can get the flu shot, which is made with killed viruses.

• Typhoid

• Varicella

After pregnancy

If you didn’t get the Tdap vaccine before or during pregnancy, you can get it right after you give birth. Getting the Tdap vaccine soon after giving birth prevents you from getting pertussis and passing it on to your baby. This vaccine is also recommended for caregivers, close friends, and relatives who spend time with your baby. Your baby should get his first pertussis vaccine at 2 months old. Babies may not be fully protected until they’ve had three doses.

Here’s a link to a chart to help you know when you can get certain vaccinations if you need them. Talk to your health care provider about vaccinations you need before, during or after pregnancy.