Posts Tagged ‘support’

Kids with special needs head back to school

Wednesday, August 26th, 2015

school-bus-and-stationeryThe start of school is an exciting time for most children and their parents. Many children with special needs eagerly anticipate the start of a new school year. But lots of kids are incredibly anxious at the thought of all the unknowns: new classroom, teacher, friends or school.

If you are the parent of a child with special needs, how are you feeling about the start of the new school year?

Are you…

Scared or fearful – Will your child’s particular needs be met?

Afraid – How will your child react to new smells, lights, sounds and routines?

Overwhelmed – Is your child going to a new school? Are you wondering whether he will be able to handle the transition?

Unprepared – Do IEP meetings make you feel like you don’t know what you are doing?

Alone – Do you feel like you are the only parent with your concerns?

Worried – Is your child going to do well in a class with “typically developing” peers?

Insecure – Are you wondering when to swoop in and help your child versus sitting back and watching him and the school handle any hiccups or problems?

Nervous – Will your child make friends? Will he be by himself on the playground?

If you are experiencing any or all of the above emotions, you are not alone. There is no doubt that starting a new school year is hard on students AND parents. But, when you mix in the complications of dealing with a disability and the necessary accommodations or supports that need to be in place in order for your child to succeed, it can be very stressful!

This blog series, and all of the resources listed in each post will help you tackle whatever comes your way. By being prepared, you will calm your nerves. Hopefully, you will become excited, confident and in-control. Your little one will sense your positive outlook and enthusiasm, and it will rub off on him, too.

Check out these tips to smooth the back to school transition for your child. Learn helpful ways to make the transition from summer to school do-able and realistic, including changing bedtime hours, adjusting meds and meeting your child’s teacher.

Please share your feelings about the new school year – good, bad, up, down, and anything in between. Got any tips? Let’s hear them. We all learn from each other.

 

Have questions?  Text or email them to AskUs@marchofdimes.org. We are here to help.

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.

Parenting your child with a heart defect

Wednesday, February 11th, 2015

in the NICUWhen your baby has a heart defect, it is overwhelming, exhausting, emotionally draining, and beyond scary. Have I left any adjectives out?

Congenital (present at birth) heart defects (CHDs) affect 1 in 100 babies every year. These heart defects can affect the heart’s structure, how it works, or both. Did you know that congenital heart defects are the most common types of birth defects? Each year, about 40,000 babies are born with a heart defect in the U.S. The good news is that more and more children born with CHDs are living longer, healthier lives, due to medical advances.

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. Depending on the heart defect, your child may or may not need active treatment. For example, some defects resolve on their own. However, there are heart defects that require more intensive treatment and care.

What is CCHD?

Critical congenital heart disease (CCHD) is a group of the seven most severe congenital heart defects:  Hypoplastic left heart syndrome (HLHS); Pulmonary atresia (PA); Tetralogy of Fallot (TOF); Total anomalous pulmonary venous return (TAPV, or TAPVR); Transposition of the great arteries (TGA); Tricuspid atresia (TA); Truncus arteriosus.

About 1 in 4 babies born with a heart defect has CCHD, or about 4,800 babies in the U.S. every year. Babies with CCHD need treatment soon after birth – often within hours, days or months, depending on the severity of the condition. A baby with CCHD will need ongoing treatment from a pediatric cardiologist, a medical doctor with advanced training.

Your child with CCHD

Some babies with CCHD will receive surgery soon after birth, and others require subsequent surgeries as they get older. The treatment your child receives will depend on the type and severity of the defect. If your child has been diagnosed with CCHD, it is important to understand his disease and the treatment that is required. Ask your child’s pediatric cardiologist and pediatrician all of your questions. The doctor can tell you if your child’s activity should be encouraged or restricted, if your child needs antibiotic treatment before certain procedures, if your child requires extra calories (from food) to help maintain his health, if he needs physical therapy or other kinds of therapies.

Children with heart defects may be delayed in reaching their developmental milestones. Early intervention may help enable your child to make strides and catch up. Other children may develop a disability over time. The early intervention program is designed to be family centered – moms and dads receive help in parenting their child, and the child receives therapy to keep progressing. Early intervention, together with medical advances, are helping children with CCHD live richer, fuller lives.

You may need support

Parenting a child with a congenital heart defect involves a blend of vigilance, medical interventions, health advocacy and lots of love and patience. The March of Dimes’ online community, Share Your Story, is a place where parents of babies with heart defects as well as other birth defects or disabilities, can go to find support, comfort and information. There is nothing like the camaraderie of another parent who has walked in your shoes to help you through your journey.  Just log on and post a comment and you will be welcomed and supported.

Where can you learn more?

Visit our website to learn more about CCHD. We discuss the most common heart defects, how they are diagnosed and treated, as well as possible causes. You will also learn about screening tests your baby can have to determine if he has CCHD. Additional guidance on parenting a child with a heart defect is available on the CDC website.

For more information about any of the heart defects listed above, contact us at AskUs@marchofdimes.org and we will be happy to help. To see similar posts in the Delays and Disabilities series, click here.

 

 

 

 

Sibling visits to the NICU can be helpful

Wednesday, February 4th, 2015

Sibling visits baby in NICUPrematurity affects everyone, including siblings. When older children have a sister or brother in the NICU (neonatal intensive care unit) they sense their parents’ concern and worry, and their lives are thrown off balance. Siblings of a preemies go through their own NICU journey of sorts – from experiencing anxiety, worry and frustration to happiness and joy. However, there are some steps you can take to help your older children through the ups and downs of the NICU experience.

If your baby is in the NICU, it may be possible for your other children to visit. Ask the head nurse of the NICU if the hospital allows this and if your preemie is strong enough for the visit. Often, seeing their baby brother or sister in the NICU helps older children understand what is happening and to realize why mom and dad are not home as much. Even a short visit can help put the situation into perspective. Visiting can also make siblings feel like they are a part of the journey and that they are helping out.

But, NICUs can seem scary to children, and seeing a tiny baby hooked up to monitors and tubes can be terrifying. Here are ideas (some from the Preemies book) to help make the visit successful. In all cases, get the permission of the NICU staff first:

• Have your older children send in a toy or drawing ahead of the visit, and display it prominently near your preemie’s bed. When your children arrive, they will see their presence and will feel an immediate connection.

• Describe your baby’s condition to your children before the visit. Perhaps show them a doll that is about the size of your preemie, so they are not too surprised when they see their tiny sibling.

• If it is possible, allow your children to touch the baby. Touch helps to establish a bond. Of course, the NICU nurse will tell you if this will be allowed or not, depending on your baby’s current medical condition.

• Ask if your children can talk, read a book, or sing a song to the baby (softly). It will give them the feeling of doing something positive to help.

• Ask if your hospital has a NICU Family Support Program. The March of Dimes partners with many hospitals in the United States. Such programs comfort and support families, including siblings. Some hospitals also have a corner where siblings can play as they wait while their parents visit. They may even meet other siblings in this play space, and be able to share their feelings with other kids who understand what they are experiencing.

There is no doubt about it – having a baby in the NICU is a difficult journey for the whole family. Hopefully, short visits will help your other children to understand, feel included and “help out”, which will in turn, lessen the mystery of having a little brother or sister in the NICU.

Additional information and support for families with babies in the NICU can be found at Share Your Story, the March of Dimes online community for NICU families. Also, see this blog post for helpful info on a father’s role in the NICU.

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 Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). You can also view a Table of Contents of prior posts. We welcome your comments and input.

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

Honoring parents with angel babies

Wednesday, October 15th, 2014

yellow butterflyThe loss of a baby is heart wrenching.  As today is Pregnancy and Infant Loss Awareness Day, I want to take a moment to honor those parents who have angel babies. Most people cannot even imagine being in their shoes for an instant, yet alone having to live a day-to-day existence without the baby they continue to love.

The loss of a baby touches so many people in profound and long lasting ways. No two individuals grieve in exactly the same manner. The mother may grieve differently from the father. Children who were expecting their sibling to come home from the hospital experience their own grief as well. Even grandparents and close friends may be deeply affected. The ripple effects from the loss of a baby are widely felt.

The March of Dimes is committed to preventing premature birth, birth defects and infant mortality. It is our hope that through continued research, we will have a positive impact on the lives of all babies so that fewer families will ever know the pain of losing a child.

If you or someone you know has lost a baby, we hope that our online community, Share Your Story will be a place of comfort and support to you. There, you will find other parents who have walked in your shoes and can relate to you in ways that other people cannot. Log on to “talk” with other parents who will understand your grief. We also have bereavement materials available free of charge. Simply send a request to AskUs@marchofdimes.org and we will mail them out to you.

Please know that the March of Dimes is thinking of you today and every day.

Breastfeeding myths debunked – part 2

Monday, June 23rd, 2014

mom breastfeeding1. Your baby needs water too.

False: Supplementing with water is not recommended for babies. Breast milk or formula contains all the water a baby needs and will keep your baby hydrated even in hot, dry climates.

2. You don’t produce enough milk.

Often False: The amount of milk you produce depends on a number of factors, including how often you feed and how your baby sucks at the breast. You can check if your baby is getting enough to eat by the amount of wet or soiled diapers in a day. The American Academy of Pediatrics tells moms to “expect 3-5 urines and 3-4 stools per day by 3-5 days of age; 4-6 urines and 3-6 stools per 5-7 days of age.” Your baby’s health care provider will check if your baby is gaining weight at his well-baby visits.

3. Breastfeeding is easy

False: Breastfeeding can be very challenging. Many moms face sore, cracked and bleeding nipples. It can hurt when you try to feed your baby. It’s important that when you start to feel pain or discomfort you seek help from a lactation counselor or support group. Many times the soreness can be relieved if the latch or position is changed. Some moms are able to breastfeed right away and others experience discomfort for months. Breastfeeding is learning a new skill; it takes lots of practice, time and patience.

4. Breastfeeding reduces the risk of SIDS

True: Breastfeeding can reduce the risks associated with sudden infant death syndrome (SIDS). Feed your baby only breast milk for at least 6 months. Continue breastfeeding your baby until at least her first birthday. The American Academy of Pediatrics (AAP) says “Breastfeed as much and as long as you can. Studies show that breastfeeding your baby can help reduce the risk of SIDS.”

5. My baby should always breastfeed from both breasts

Not always true: Babies, especially newborns may have periods of preferring only one breast. Your baby may cry, become fussy or refuse to feed on one breast. If your baby is getting enough milk and you are not having any other trouble, it is fine for your baby to feed from only one breast. If you are having problems with your milk supply, or experience engorgement or pain, there are tips to get your baby back on both breasts.  For example try starting your baby on the preferred breast, and then slide him over to other side without changing the position of his body. To learn more, ask a lactation specialist.

Did you have an assumption about breastfeeding that was false? Or did someone give you advice that helped? We’d love to hear from you.

Check out the first 5 breastfeeding myths from last week.

Breastfeeding myths debunked

Monday, June 9th, 2014

woman breastfeedingWhether you are currently breastfeeding or planning to breastfeed in the future, there are many myths that could lead you toward or away from breastfeeding.

1. Breastfeeding will ruin my breasts.

False: breastfeeding does not affect the shape of your breasts. Your breasts may become engorged while breastfeeding, but your breasts will return to their usual shape once you have weaned feedings. Aging and gravity are the culprits of changing breast shape!

2. Breastfeeding will make my nipples sore.

True and False: Breastfeeding may make your nipples sore, but there are things you can do to prevent or solve the soreness. Sore nipples may happen when the baby is not latched on properly. You can seek help and support from a lactation counselor or support group.

3. Breastfeeding may help you lose your baby weight.

True! Breastfeeding burns extra calories (up to 500 a day), helping you return to your pre-pregnancy weight in a gradual and healthy way.  Remember pregnancy weight was not gained overnight so it will not disappear quickly. It is important to maintain a healthy diet and to wait until you feel ready and for your health care provider’s OK to purposely lose weight.

4. You must drink milk to make milk.

False: You do not need to drink milk to make milk. However it is important for you to maintain a healthy diet of vegetables, fruits, grains, proteins and water. These are the only nutrients you need to produce milk. If you are concerned about getting enough calcium, you can drink milk or eat non-dairy foods that contain calcium such as dark green vegetables or nuts.

5. My milk isn’t good enough.

False: Breast is still best. Breast milk composition changes within the feeding, within the day and over the course of lactation, but breast milk has higher amounts of nutrients than other foods or supplements, including formula. Your breast milk can help protect your baby from things like diarrhea and infections, and help brain development.

These are the first 5 myths debunked. Stay tuned next week for more.

Did you have an assumption about breastfeeding that was false? Or did someone give you advice that helped? We’d love to hear from you.

Remembering September 11th

Thursday, September 11th, 2008

This is not an easy day for any of us. I was just contacted by a former co-worker reminding me of that morning we spent together seven years ago. I know of three people who lost there lives that day. My brother is doing his second tour of duty in Afghanistan.  My brother-in-law was supposed to start a new job in Tower 1, but was asked to attend an orientation off-site that day. My husband, a medical student at the time, waited in an uptown hospital for patients that would never come. The Peace Corps office was down there. It was 1997 when I had my interview. I’m sad it’s not there anymore.  That night unable to sleep, I walked down to the shore of the Hudson River from my Bronx apartment. I looked south to the very changed Manhattan sky line and sobbed. Things would never be the same again.

To all of the families, mothers and children who were affected by this horrible tragedy, you’re in our thoughts and prayers today and always.

For information and support, please visit http://www.911families.org

Discover breastfeeding support during pregnancy

Thursday, August 7th, 2008

If you’re expecting and planning to nurse your baby, now’s the perfect time to compile a list of phone numbers of friends and family members who have nursed their babies. Breastfeeding is a natural skill, but it is also a learned skilled. Surround yourself with people who support your decision to breastfeed.

My friend who just had the twins is nursing both her babies. She started to work with a lactation consultant a couple of months before she delivered. For additional support she’s been in touch with La Leche League International (847-519-7730) and International Lactation Consultant Association (919-861-5577).

In conjunction with the start of the Olympics this week, World Breastfeeding Week 2008 calls for greater support for mothers in achieving the gold standard of infant feeding. Awareness raising activities are taking place in 120 countries world wide. For more information on the theme, exciting events & materials for download, please visit: www.worldbreastfeedingweek.org

 

When you’re emotionally ready

Tuesday, June 24th, 2008

The emotional aspects of parenting can be a real challenge for first time moms and dads.  Before you get pregnant it’s important for you and your partner to discuss your reasons for wanting a baby.  Here’s an easy exercise to help get the conversation started. Do you agree or disagree with the following statements? Ask yourself why you feel the way you do.

• I think I will be a good parent.

• I like being around children.

• I want to have a baby now.

• I have what it takes to help a child feel loved and wanted.

• I can accept the lifestyle changes that come with starting a family i.e. financial demands, less free time and sleep and more stress.

• My partner and I have a good relationship.

• I would not harm a child physically or emotionally.

• I have support from family and friends.

• I make healthy decisions for myself.

Can you think of any other helpful statements that we can add to this list? What else should a couple take into consideration before having a baby?