Archive for the ‘Help for your child’ Category

Tips for family travel with your child with special needs

Wednesday, July 29th, 2015

air travelIt is the end of July already, and many summer programs or camps are beginning to wind down. Some families like to take a few days or more to spend together. But, often traveling with a child who has complicated or special needs can be difficult.

Here is a blog post on how you can vacation with your child with special needs. It includes tips on what to do ahead of time, how to enhance communication while on your trip, and how to implement a positive reward system to help encourage desired behaviors. This post also includes travel ideas, such as the best places for your family to go with your child.

Accommodations help vacationers with special needs reviews special offerings and assistance available in many theme parks, sports stadiums and ball parks as well as hotels, pools and restaurants, thanks to the ADA. Even airlines will let individuals with cognitive or physical disabilities pre-board flights, to make life easier for you and your child.

There is no need to stay home when you and your family can get a change of scene and pace with just a little pre-planning and inquiring. vacation-family-carHopefully, these posts will give you the tools you need to make it work for you and have an enjoyable vacation.

If you have had a good experience at a particular destination, we’d love to hear about it. Please share.

 

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

See other posts in the Delays and Disabilities series, here.

Happy 25th Anniversary ADA!

Wednesday, July 22nd, 2015

wheelchair symbolThere is so much that we have in our country that enables individuals with disabilities to access buildings, streets and facilities safely and without difficulty. A sidewalk ramp, an elevator, handicapped parking spots, wider doors to allow wheelchairs to pass through, sign language interpreters, tweeting sounds at street crosswalks, and braille on elevators are just a few of the enhancements that people with disabilities utilize today.

But it was not always this way.

I remember a time when my classmate who was in a wheelchair, could not enter a bathroom stall in a public restroom, because the door was not wide enough for her wheelchair to pass through. I’m sure other people remember times when individuals with disabilities could not get on a bus, get down a curb to cross a street, or find an elevator instead of stairs to get to the second floor of a building. Simply put, daily life was so much harder and often prohibited a person from going places, being independent or living life similar to a person without disabilities.

But all of this changed on July 26, 1990, when the American with Disabilities Act, or ADA, was signed into law by President George H. W. Bush.

The ADA prohibits discrimination on the basis of disability in employment, transportation, public accommodation, communications, and governmental activities. The law removes barriers and establishes that reasonable accommodations be made available to people with disabilities.

What is a disability under the ADA?

The ADA defines a disability as “a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. The ADA does not specifically name all of the impairments that are covered.” In addition, the disability does not have to be severe or permanent, either. For example, a pregnant woman who is temporarily unable to perform her job due to pregnancy must be treated the same way as another temporarily disabled employee.

How does the ADA help people with disabilities?

The ADA is not only there for physical enhancements in our environment; it seeks to eliminate discrimination on the basis of disability, much the same way the Civil Rights Act of 1964 outlawed discrimination based on sex, race or religion.

The ADA website describes in detail the ways in which this law helps individuals with disabilities access jobs, schools, public places (such as day care centers, recreation facilities, movie theaters, restaurants, hotels, pools and many other places), and services such as telephones, cell phones, pagers, call-waiting, and operator services.

You can read more about how this law is far reaching and important in the lives of individuals with disabilities at ADA.gov or Disability.gov.

So, happy anniversary ADA. And thank you for helping to become an equalizer when it comes to access and opportunity for so many Americans.

 

Fathers help mold their children’s future

Wednesday, July 15th, 2015

dad and babyAlthough this blog is called “News Moms Need,” this week we’d like to give a shout-out to dads. Fathers provide a specific kind of nurturing and support to babies and children. Research suggests that fathers who are active and present in their children’s lives may have a positive effect on their future development.

All fathers, and especially those of children who are born prematurely, with medical conditions or disabilities, play a vital role in their children’s care. They diaper, feed and soothe babies, attend IFSP or IEP meetings, advocate for their children, help with homework, and pitch in when and where they are needed.

In a study that looked at the experiences of first-time fathers of late preterm infants, the authors noted “Fathers believed they had the ‘best job in the world,’ yet saw fathering as the ‘biggest job ever.’ Fathers viewed fatherhood as an opportunity for personal growth and reflected on how their lives had changed since the arrival of their infant.”

Just as fathers are instrumental in molding their young children, they are also deeply affected when something goes wrong. We have heard from dads who lost a baby or child, and the grief they experience is deep and constant. Although they may grieve in different ways from the mom, they nevertheless experience profound pain.

Here are some facts about the increasing role of dads in the lives of their children:

  • Twenty percent of fathers (1 out of 5) are now the primary caregivers of preschool-aged children when the mother is employed.
  • The number of stay-at-home dads (in a home where the mom works) has doubled in the last 25 years.
  • In the last 40 years, the number of father-only families has more than tripled.
  • In one national survey, 95% of fathers reported they participate in bathing and diapering their children several times per week.
  • A recent government report stated “Although fathers continue to spend less time on childcare than mothers, this gap has narrowed over the past 10 years and dads are increasingly performing caregiving activities traditionally done by mothers.”
  • A Pew Research study reports, “The amount of time parents spend with their children continues to go up. Fathers have nearly tripled their time with children since 1965.”

There is no doubt about it – mothers and fathers bring a different dynamic to parenting. Both are critically important in the long, joyous but often arduous road of parenting, and deserve to be acknowledged.

To all the dads out there: what advice would you give a man as he is about to become a father for the first time?

 

Comments or questions? Send them to AskUs@machofdimes.org.

View posts in the series on Delays and Disabilities, here.

Living with loss

Wednesday, July 8th, 2015

yellow butterflyFor families that suffer from the unspeakable pain of losing a baby, their grief continues for a lifetime. It may ebb and flow; it may be more acute at anniversaries or when something triggers a memory. It may even seem to be out of mind for periods of time, but it is never gone completely. A woman starts loving her baby from the moment of conception and this love continues throughout her entire life. Similarly, the feelings of sadness and loss continue because a parent’s love has no end.

At the March of Dimes, women have written to us after suffering a miscarriage or stillbirth, asking when they will “get over” the loss of their baby. This is a question that is impossible to answer. Your life will go on – all the chores, jobs, responsibilities and even parties continue. But, the reminders will be there always, with the sadness and deep disappointment to go along with it.

I know a woman who lost her baby boy 31 years ago. She had tried for years to become pregnant, so her pregnancy was an especially joyous time for her. The immense happiness was followed by intense grief on the day of her son’s birth, as he lived for only a few hours. Even though she eventually went on to have a healthy baby, she still mourns the loss of her son. She marks her son’s birth and death every year, and continues to remember him. Her pain is palpable, even though so many years have gone by since that heartbreaking time.

Acknowledging and talking about the loss of her baby has helped her to know that her son was real, and that her grief is legitimate. She had bonded with her baby from the moment she learned she was pregnant. To ask her to forget about this tiny person would be ridiculous.

The pain of losing a baby is one that many women struggle with for life. Perhaps it is because the baby never got the chance to grow up and follow his dreams. Or, maybe it is because the mom is denied the natural desire to nurture her child and watch him grow up. Losing a child is like a double wallop- you lose your child and the dreams that go along with him.

It’s so unfair.

If you have suffered a pregnancy or infant loss, you may want to reach out to others who will understand your unique pain. You may find a local support group in your area, or you can join our online community, Share Your Story where you will meet other women who know what living with loss is all about. You are not alone.

The March of Dimes has written a booklet called From Hurt to Healing to help families understand their grief. It explains grief and how men and women grieve differently. It talks about how to deal with your feelings, tells you how to ask for help, how to deal with family and friends, how to help other children understand. And it suggests ways to remember your baby. Two other booklets, What Can You Do? and When You Want to Try Again are part of a packet the March of Dimes offers free to bereaved parents who have suffered a loss. If you would like to receive a packet, send your name and address to AskUs@marchofdimes.org.

You will never forget your baby, but in time the power of love will help you find the strength to move forward and love again.

 

Comments or questions? Send them to AskUs@machofdimes.org.

View posts in the series on Delays and Disabilities: How to get help for your child.

 

Fourth of July – fabulous or frightful?

Wednesday, July 1st, 2015

fireworksHolidays can be an especially stressful time for children with special needs; Fourth of July celebrations are no exception. Here are some tips to get through the holiday weekend happily.

 

Fireworks

It seems that people either love them or steer clear of them. The colors that light up the night sky are beautiful to watch. But, for children with sensitive hearing, it can be a painful experience. Learn how you can help your child enjoy a fireworks display without discomfort or a meltdown.

Even though fireworks may be legal to use in some areas, it does not mean they are safe. Use extreme caution if you will be handling fireworks. Make sure you have a fire extinguisher on hand and take the time to learn about fireworks safety.

Firecrackers

The loud burst of noise from firecrackers can cause hearing problems. In fact, firecrackers can cause noise-induced hearing loss. Hearing protection should be used whenever you are around firecrackers, as they can cause immediate hearing damage.

Sparklers

These little bursts of flames can heat up to 1,200 degrees! Although they look tempting to touch, every year, many children under the age of 5 end up in the emergency room due to injuries from sparklers. If you insist on using them, closely supervise the use of sparklers and be sure the lit end stays away from faces – especially eyes. Better yet, avoid them altogether or use glow sticks for some bright, colorful fun.

Noisemakers

Poppers, pop-its, snappers or other noisemakers that make popping noises when thrown on the ground, can be extremely hard for kids to tolerate, even without sensitive hearing. (They also make dogs go crazy!) If your child suffers from sensitive hearing, keep her away from these noisemakers.

26american-flagWith a little knowledge and some planning,  your child can enjoy the holiday, without distress or a trip to the ER.

Have a safe and happy Independence Day everyone!

Have questions? Send them to AskUs@marchofdimes.org

View other posts in the series on Delays and Disabilities: How to get help for your child.

 

Having a baby in the NICU can be stressful for siblings

Wednesday, June 24th, 2015

IMG_9387Giving birth early and having a baby in the NICU is stressful for parents; but what is sometimes overlooked is how upsetting it is for the preemie’s siblings.

A change in routine is upsetting to children. Having mom and dad away from home for long periods of time can turn even the most well-adjusted child upside down. If your child has not been able to visit her sibling or she does not have a solid grasp on what is happening, the uncertainty of the situation can cause distress. What can you do to ease the anxiety that is trickling down to the smallest members of your family?

  • Talk to your child at a level that she can understand. There are children’s books that explain prematurity. These books can make the explanation much easier for parents. Check with your local library for appropriate titles.
  • Reassure your child that nothing she did or said caused her sibling to be born early. Some kids may blame themselves or feel guilty.
  • Your child might be very worried and fear that the baby may never come home. As best you can, let your child know that you and the doctors and nurses are taking good care of her baby sibling, just as they would take care of her.
  • Understand the signs of distress in your child. Any regression (loss) in developmental progress (such as bed wetting, not sleeping through the night, acting out or being excessively attached to you), may indicate that your child is feeling the negative effects of the situation.
  • If possible, have your child visit your baby in the NICU.
  • In the Preemies book, you can read about these and other ways to minimize the anxiety that having a baby in the hospital can have on your family.

Do you have any tips to share on how to help your older children got through the stress of having a baby sibling in the NICU? Please share.

Have questions? Send them to AskUs@marchofdimes.org

View other posts in the series on Delays and Disabilities: How to get help for your child.

 

Talking to your child about his medical condition

Wednesday, June 17th, 2015

child in wheelchairParents have written to us asking when they should tell their child that he has a disability, birth defect or chronic medical condition. Not only do they want to know when to tell their child; they want to know HOW to do it.

According to the experts, there is no straight, cookie-cutter answer. Every child is different. Every medical condition is different. Kids mature at varying rates, so one five year old may be capable of understanding details of his condition while another one will not be able to grasp the concepts. According to the AAP, “The type of information you convey to your child should be appropriate for your child’s age and developmental abilities. You can gauge this best by listening to her questions.”

Seeking advice from your child’s pediatric health care provider is always a good place to start, along with other specialists such as a therapist, psychologist, neurologist or developmental pediatrician. The AAP has practical information on how to talk to your child, along with tips on how to help him deal with the daily stress of a childhood disorder.

Just as you probably felt like a steam roller moved over you when you learned of your child’s condition, your child may also feel disappointed, sad or even angry. On the other hand, your child may feel a sense of relief to realize that the condition has a name, he is not the only child who has it, and mom and dad will be there to support him through the ups and downs. Other children may not have much of a reaction, as they already knew what was going on – or felt different – so they are not especially moved by the new information.

Depending on your child’s age, his ability to understand, and what he hears from peers and siblings, he may know more about his condition than you think. And, each year, as he grows and matures, his ability to understand will increase. AAP recommends that “Every year or so, someone should check out what the child understands about his illness or disability, fill in the gaps and correct information that he does not understand correctly.”

Children’s books on the topic of his disability can help your child understand what is happening in his world. Likewise, meeting other children who share his condition may help to put it in perspective and brighten his outlook. He may even make a new friend or two.

Remember to focus on what your child CAN do, as opposed to his struggles. This attitude is key in keeping him focused on the positive. Help him find his passion  and celebrate his resilience.

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

View other posts in the series on Delays and Disabilities: How to get help for your child.

 

 

Shingles, kids and pregnant women – know the facts

Wednesday, June 10th, 2015

Many pregnant women have written to us expressing concern about being exposed to a family member who has shingles. Usually it is their parent or grandparent, or another older adult who has the virus. However, did you know that children can get shingles, too?

When my daughter was in fourth grade, she came home from school with a tiny rash on her back about the size of a quarter, complaining of pain and exhaustion. I had never seen a rash like that before; it was a little clump of tiny bumps. Sure enough, her pediatrician diagnosed it as shingles. I was shocked, as I never associated shingles with kids. Although it isn’t common, it does happen, and the risk of getting singles increases with age. My daughter had a mild case, and after about 2 weeks she was on the mend. She was lucky – it can be very painful and last longer.

What causes shingles?

Shingles (formally known as Herpes Zoster) is caused by the Varicella Zoster virus, the same virus that causes chickenpox. Only someone who has had chickenpox – or, rarely, has gotten the chickenpox vaccine – can get shingles, according to the CDC. The chickenpox virus stays in your body and can re-appear at a later date, often many years later. When it reappears, it does not return as chickenpox – it comes back as shingles.

How common is shingles?

My daughter had chickenpox (the disease) when she was four years old. At that time, the vaccine was not yet available. It is far less common to develop shingles if your child has had the chickenpox vaccine. By vaccinating your child against chickenpox you will decrease her chances of getting shingles later in life.

At least 1 million people a year in the United States get shingles. Shingles is far more common in people 50 years of age and older. It also occurs more in people whose immune systems are weakened because of a disease such as cancer, or drugs such as steroids or chemotherapy.

Can you catch shingles from someone who has shingles?

No, you can’t catch shingles from another person who has shingles. However, a person who has never had chickenpox (or the chickenpox vaccine) could get chickenpox from someone with shingles. However, this is not very common. Shingles is not spread through the air and infection can only occur after direct contact with the rash when it is in the blister-phase. A person with shingles is not contagious before the blisters appear or after they scab over.

If you are pregnant or trying to get pregnant…

• First, get a blood test to find out if you’re immune to chickenpox. If you’re not immune, you can get a vaccine. It’s best to wait 1 month after the vaccine before getting pregnant.

• If you’re already pregnant, don’t get the vaccine until after you give birth. In the meantime, avoid contact with anyone who has chickenpox or shingles.

• If you’re not immune to chickenpox and you come into contact with someone who has it, tell your provider right away. Your provider can treat you with medicine that has chickenpox antibodies. It’s important to get treatment within 4 days after you’ve come into contact with chickenpox to help prevent the infection or make it less serious.

• Tell your provider if you come in contact with a person who has shingles. Your provider may want to treat you with an antiviral medication.

What does all this mean for your child?

• If you think your child may have shingles, contact her health care provider. Prompt treatment may shorten the duration and keep pain to a minimum.

• Get your child the chickenpox vaccine to protect her against chickenpox, and so that she has a far less chance of getting shingles in the future.

Learn more about shingles exposure and chickenpox during pregnancy.

 

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

View other posts in the series on Delays and Disabilities: How to get help for your child.

 

 

Caring for your sick baby

Wednesday, June 3rd, 2015

soothing crying babyRecently, one of our health education specialists received an email from a new mom asking what she should do for her four month old daughter who was crying, not feeding and seemed hot to the touch.

The Pregnancy and Newborn Health Education Center has been answering questions from the public for nearly two decades. We provide scientifically based responses to questions on pregnancy (including preconception, complications and postpartum care), prematurity, birth defects, infant and young child care, delays and disabilities, and other health related topics.

In the case of this new mom, the health education specialist recommended that the mom take her baby to see her health care provider. Babies can get sick very quickly, and the only one who can make the judgment as to what is going on, is a medical professional who examines the baby.

But, often a mom needs information about a condition, and that is where our website can be an enormous help.

 Well and sick baby care is on our website

We provide tons of info on what to do if you suspect that your baby or child is not well. You will

Here’s a sampling of other topics that you’ll find on our website:

Croup
Ear infections
Cytomegalovirus
Neonatal Abstinence Syndrome
Roseola
Reflux
Thrush
Teething

There are many more conditions -take a moment to look through and familiarize yourself with our website. It is rich with information.

Birth defects and special needs

You can also find information on various birth defects and disabilities, from autism spectrum disorder to thalassemia. You can learn how to get services for your baby after the NICU, too. Once you review the information, if you are not sure about how to care for your child, or would like more information about a particular health condition, send an email to AskUs@marchofdimes.org. We will be happy to provide an answer to your question within two business days.

If you are unsure, or it is a problem that cannot wait, always contact your health care provider or take your child to the nearest emergency room.

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

 

How to find camps for children with special needs

Wednesday, May 27th, 2015

summer campIt’s the time of year when school is wrapping up and kids of all ages are looking forward to summer fun. Children with special needs are no exception.

Recently, a mom wrote to us asking for help locating a camp for her four year old child with speech and language issues. After a bit of research I came up with this list. It is by no means exhaustive, but it will get you started if you are trying to find a place where your child can get the attention he needs and have a fun camp experience. Although it may be a bit late to find a camp for this summer, keep this list handy as you will no doubt want to use it next year.

Remember, if your child has an IFSP  or an IEP, he may be eligible for extended school year services (ESY). Learn more about ESY and speak with your IEP team about options.

Most of the following resources list camps by specialty (condition or disability) and region. You will need to investigate and decide what is best for your child.

Camps for kids with special needs:

NCHPAD – National Center on Physical Activity and Disability’s Fun and Leisure section on camp resources

Discover Camp  -a booklet on sending your child with special needs to camp for the first time

My summer camps resource guide

CampResource.com

Choice Camps

Diabetes Education and Camping Association

Easter Seals – a directory of day and residential camps

Special needs in NY Metro area

Gallaudet – summer camps for deaf and hard of hearing children and teens

Cancer – lists camps for kids and adults with cancer, as well as arthritis, asthma, diabetes, or sickle cell anemia.

Amputees and children with limb differences

Bottom line

marshmallow on a stickWith a little research and planning, your child will soon be able to enjoy all the joys of summer in a safe and supportive environment.

Have questions? Send them to AskUs@marchofdimes.org

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