How to be patient with a child with special needs

Published on Aug 30, 2018 in Trisomy 21 Update

Trisomy 21 Program

One of the most basic instincts in parenthood is keeping your child safe. The job begins as soon as your child is born, offers no days off, and continues through adulthood.

Children with Down syndrome may have specific vulnerabilities that heighten parental concerns regarding safety. Medical issues, such as hearing and vision impairment or gross and fine motor challenges may influence the way you “safety-proof” your home.

Individuals with a limited sense of danger may need extra safeguards against impulsivity in public places, in traffic, or around bodies of water. Those with a trusting nature or difficulty understanding social boundaries may need special precautions to prevent abduction and exploitation.

Then there’s fire safety, drowning, wandering, abuse, bullying and internet pitfalls. There should be no topic too daunting to consider, because anticipating and preparing for hazardous scenarios can help prevent frightening or tragic outcomes.

The everyday hazards in your home require constant safety updating. The precautions that any parent takes, such as plugging electrical sockets and affixing bumpers to sharp furniture edges, are no different for the parent of a child with trisomy 21. You should never expect your child’s developmental delay to provide any measure of safety. In other words, if your toddler is not walking yet or has difficulty manipulating small objects, it is still necessary to secure gates by the stairs and place medicines and poisonous materials out of reach or in a locked area.

Your child will surprise you with their emerging capabilities — let it be in exciting new ways and not those caused by regret about the dangers that caught you unprepared.

The need for specialized safety training

So, what factors place children with Down syndrome at increased risk compared to their typically developing peers? Children with Down syndrome may:

  • Have a more difficult time interpreting the danger of a given situation, even as they get older
  • Not be able to call for help or express details of a bad experience because of limited communication skills
  • Hide from loud noises, such as a smoke alarm, or run from an overstimulating environment, like a crowded public event, because of sensory issues
  • Not react appropriately or quickly enough in emergency situations because they are intent on maintaining routines
  • Be more vulnerable to abuse or bullying because they are taught to listen to authority figures and follow their orders

Five safety tips

Here are some general steps toward a safety plan that you can initiate at any time.

Embrace the help of your community

Think about all the people involved in keeping your child safe. This may include immediate and extended family members, neighbors, school personnel, local law enforcement agencies, your child’s peers, and even your child.

If you consider yourself a private person and have difficulty reaching out, recognize that you will need the help of others at times. Whether it’s to keep a watchful eye, teach your child about safety matters, or respond to a crisis, maintaining relationships with community members bolsters your individual capacity to protect your child.

Create a family safety plan

It is helpful to designate a safety section to your file of important documents. This may include pre-formatted sheets that can quickly be handed to emergency responders to provide identifying and personal information when needed.

You may wish to keep lists of companies that offer safety equipment for those with special needs. And, you may hold on to educational materials that you can use as your child builds on their abilities.

Schedule emergency drills and role-play threatening scenarios with themes appropriate for your child’s level of understanding. Your child will probably think it’s all a game but will learn crucial skills in the process. In addition to what you can teach at home, consider adding safety goals to your child’s school-based IEP.

Teach safety language

Using language to keep your child safe starts when children are young with basic one-word messages, like “stop” and “no.” Your dialogue can gradually become more advanced and include concepts such as safe, dangerous, emergency, trust, privacy, and individual rights. Some children may need signs or pictures to convey these ideas. Public resources are available for you to print out and post at home from organizations like Safe Kids Worldwide and Kidpower.

Teach your child to call for emergency services

Load your child’s cell phone with important contact numbers, use thumbnail photos for speed-dialing, and review who to call in different situations. Review how and when to dial 911.

If needed, obtain a home phone with easy-to-recognize symbolic speed-dial buttons. Register for Smart 911, a service available in most communities that allows you to create a profile with as much detail as you wish about your family, including medical and behavioral information, or photos of your child and your home. The information in your profile automatically populates when you reach a 911 operator and limits the information that your child would need to convey when a call is placed.

You can also enable the Emergency SOS features on your child’s smartphone or install a third-party SOS app. In 2017, the National Down Syndrome Congress partnered with RapidSOS, an advanced emergency technology company that allows more precise locating information to emergency services when calling from a cell phone. They have offered NDSC affiliates a time-limited free subscription to the Rapid SOS Haven app.

Become familiar with community programs

There are special needs disaster registries in most communities, allowing local response agencies to keep information about your child on file in advance of an emergency. There are special needs shelters that provide higher level medical services in the event of an evacuation. This may be especially helpful for those who live in a coastal flood-watch region, high fire hazard severity zone, or tornado risk area.

Project Lifesaver, accessed through law enforcement agencies in many communities, is a non-profit organization dedicated to finding missing persons through radio-transmitter tracking of those at-risk for wandering. Special needs safety education programs may be available through local public agencies or non-profit organizations.

More to come

Upcoming topics in our special needs safety series include:

How to be patient with a child with special needs

Excerpted from page 16 of the November/December edition of AOA Focus.

It’s known that children with developmental or intellectual disabilities have a higher rate of vision disorders that often go undetected or untreated. That’s why the AOA’s Comprehensive Pediatric Eye and Vision Examination guideline recommends these special patients receive a comprehensive pediatric eye and vision examination. Although more clinically challenging, a visual assessment is possible with a bit of flexibility and preparation.

Sue Lowe, O.D., AOA Health Promotions Committee chair, and Dominick Maino, O.D., professor of pediatrics/binocular vision at Illinois College of Optometry, share helpful tips for examining these unique patients.

1. Do your due diligence.

“The most important thing I have found is to make sure when a patient calls that we find out why they were referred to us, or why they are coming, so that we can get a good telephone interview to begin with,” Dr. Lowe says. This preparation is bolstered with a developmental questionnaire that includes patient history, concerns and the type of services currently received—be it occupational, speech or physical therapy—and development history. That initial groundwork is equally important for the doctor’s self-education.

“The more you know, the better,” Dr. Maino says. This is not only limited to a rudimentary understanding of the patient’s condition, but also what the literature says may benefit that patient. For instance, patients with Down syndrome—no matter the age—often benefit from a bifocal lens, Dr. Maino says. So, too, these patients often have weak immune systems, which is why Dr. Maino chooses more aggressive treatment of a condition such as blepharitis. “I change my treatment to coincide with the patient’s needs, backed up by that prior knowledge.”

2. Consider patients’ comfort.

New environments can be stressful, so do what you can to alleviate that anxiety even before the patient arrives at the practice. During scheduling, make sure staff inquire about appropriate examination times when the patient is at his or her best. Select a time of day when the patient is likely well rested and build in extra time for the examination, Dr. Lowe suggests. Also, consider allowing patients to visit the practice with their caregivers ahead of the examination, Dr. Maino says, to help alleviate that uncertainty the patient may be experiencing. And when the patient does arrive for his or her appointment, be willing to do the examination in a place other than the examination chair, Dr. Lowe says. Sometimes a patient may be more comfortable on a parent’s lap or sitting on the floor, so be prepared with handheld instruments.

3. Be flexible in the exam.

If doctors have done their due diligence, they shouldn’t be too concerned when approaching the actual examination. Start by checking assumptions at the door, Dr. Maino suggests, and let the patient prove what he or she can or cannot do. Although some patients may sit perfectly fine for a routine exam, others may need certain considerations. Children, especially, might not have the attention span for a full battery of tests. Therefore, it’s important to come prepared with the necessary objective examination tools. Consider a light-up toy as a fixation device, or use LEA symbols for an uncommunicative patient. Importantly, do what you can and become comfortable dealing with “fuzzy clinical data,” Dr. Maino says. Sometimes that involves using tools in different ways to get the desired data. “Some patients won’t let you use an autorefractor, so I may use the direct ophthalmoscope to determine the spherical equivalent refractive error and start by using that as my first prescription.”

4. Welcome collaboration.

It takes a village to raise children, they say. And that’s certainly true when coordinating care for children with developmental disabilities or other challenges. Encourage patients or parents to bring along their care team—therapists, teachers—for the pediatric eye examination to improve their own education and bolster a collaborative environment, Dr. Lowe says. Make sure to offer explanations, not only to the patient, but also to the caregiver, and consider furnishing a written summary of the appointment.

Adah Chung is a fact checker, writer, researcher, and occupational therapist.

Special needs is an umbrella term for a wide array of diagnoses, from those that resolve quickly to those that will be a challenge for life and those that are relatively mild to those that are profound. Children with special needs may have developmental delays, medical conditions, psychiatric conditions, and/or congenital conditions. These special needs require accommodations so children can reach their potential.

No matter the reason, the special needs designation is useful. It can help you obtain needed services, set appropriate goals, and gain an understanding of your child and the stresses your family may face.

How to be patient with a child with special needs

Challenges and Triumphs

Special needs are commonly defined by what a child can’t do—milestones unmet, foods banned, activities avoided, or experiences denied. These hindrances can hit families hard and may make special needs seem like a tragic designation.

Some parents will always mourn their child’s lost potential, and some conditions become more troubling with time. Other families may find that their child’s challenges make triumphs sweeter and that weaknesses are often accompanied by amazing strengths.

Each Family Has Different Concerns

Pick any two families of children with special needs and they may seem to have little in common. A family dealing with developmental delays will have different concerns than one dealing with chronic illness. These families will have different anxieties than one dealing with mental illness, learning problems, or behavioral challenges.

Special needs is a very broad term and every situation is unique. Families should focus on seeking the help and guidance needed for their particular concerns.

Medical Issues

Medical issues for children include serious conditions like cancer, heart defects, muscular dystrophy, and cystic fibrosis. It also includes chronic conditions like asthma and diabetes, congenital conditions like cerebral palsy and dwarfism, and health threats like food allergies and obesity.

A child may need frequent medical testing, hospital stays, equipment, and accommodations for disabilities. Establishing a good support system is very important when dealing with uncertainty and any medical crises.  

Behavior Issues

Children with behavior issues may not respond to traditional discipline. Diagnoses like ADHD, fetal alcohol spectrum disorder (FASD), dysfunction of sensory integration, and Tourette’s syndrome require specialized strategies that are tailored to their specific needs. Behavior issues can increase the risk of problems at school.   As a parent, you will need to be flexible, creative, and patient.

Developmental Issues

Developmental disabilities can change your visions of the future and provide immediate difficulties in caring for and educating your child. Diagnoses like autism, Down syndrome, and intellectual disabilities often cause children to be removed from the mainstream.

Quite often, parents become fierce advocates to make sure their children receive the services, therapy, schooling, and inclusion they need and deserve.  

Learning Issues

Children with learning disabilities like dyslexia and auditory processing disorder (APD) struggle with schoolwork regardless of their intellectual abilities. They require specialized learning strategies to meet their potential and avoid self-esteem problems and behavioral difficulties.  

Parents of learning-challenged kids need to be persistent. This includes working with your child at home as well as teachers and schools to ensure they get all the help they need.

Mental Health Issues

Realizing that your child suffers from anxiety or depression or has attachment difficulties can be unexpected. Again, every child will be different, yet these can leave your family dealing with a roller coaster of mood swings, crises, and defiance. It’s important that parents find the right professionals to help. You will also need to make decisions about therapy, medications, and, possibly, hospitalization.

A Word From Verywell

Although every special needs child is different and every family is unique, there are some common concerns that link parents. These include getting appropriate care and promoting acceptance in the extended family, school, and community. For some, planning for an uncertain future may be necessary. You will also find yourself adjusting routines and expectations, sometimes quite often.

Out of necessity, parents of children with special needs are often more flexible, compassionate, stubborn, and resilient than other parents. While it may not be something you had hoped for or expected, it is important for your child that you try to do your best. You can take comfort in the fact that you’re not alone, so feel comfortable reaching out for support.

Waiting: Strategies for use at home & school

Waiting can be a challenge for many children. As a teacher and a parent I have had to find ways to teach children to wait for a whole range of things. Throughout the day in the SEN classroom there are natural lulls in planned activity. This may be due to staff breaks, the logistics of managing resources in the classroom, switching attention between children and transition. Teaching a child to wait have many advantages and will be a skill that the child will need to draw on throughout their life. Waiting is a social skill that it is too easy to presume a child will be able to do. I have always taught autistic children and the teaching of waiting was an integral part of our daily routine.

What is waiting?

Teaching children to wait needs adults to carefully plan why that child is waiting and designing appropriate resources to support them. Identify the times in the day that they may need to pause before moving on. Technically waiting means remaining inactive until an expected event occurs. This isn’t really the case in schools. I have never managed to keep a class or my own children inactive. Their are two usual reasons for a child to be waiting. Transition between activities/tasks and delayed gratification. Both of these have a different purpose but have a commonality in required skills. To wait successfully in either case requires the following areas of awareness:

  • Expectation
  • Trust
  • Time
  • Patience
  • Anticipation
  • Purpose

Teaching children to wait: Developing an expectation of patience

For the following strategies to be successful the expectation within that environment needs to be one of patience and waiting. When behaviours linked to impatience are displayed it is essential that the adult response is planned to enhance the teachable moment. For example if a request is made the adult could shape the interaction by explaining when the item can be had. This is were appropriate boundaries can be put in place. Sometimes a need can and should be met immediately, sometimes we can plan a delay to that need without causing distress. Teaching children to wait requires us to have patience and does require us to have a plan.

As an adult demonstrating any skill we can model expectations of patience in our interactions throughout the day. When we make a request of the child we need to be careful not to harangue the child into compliance (a tricky balance when living with procrastinators). Children will pick up on all of our behaviours. Every “Hurry up” and sign of impatience will be teaching them that waiting is bad. We are all human and often in a rush. School timetables are a cause of stress and often not conducive to teaching waiting.

10 Strategies for teaching children to wait

Teaching children to wait.

    Explain why we are waiting

Depending on the child’s receptive language level always explain to the child why a request cannot be carried out immediately. “The chips are still cooking” Lynn’s book includes an excellent social story on waiting

Use concrete representations of time

Time itself is an abstract concept. When waiting time can seem to drag. When enjoying an activity or in a flow state time passes without notice. A visual timer, countdown, egg timer or app can be useful. These allow a child can monitor the reducing amount to time they will wait.

Similar to co-regulation, wait with them. Often as adults we are the ones doing the making, sorting, cooking etc. Try to create opportunities to wait as well. i.e if waiting for a bus or train sit with them, don’t use your phone, pace up and down etc. If you have a TA or other adult use them as co-waiters while the other sets out resources etc.

Involve the child with jobs

When teaching a child to wait don’t be afraid to help them fill that time. A good example of this is at dinner time. The child can lay the cutlery etc. You are filling the time with meaningful activity. By doing this you are also supporting their life skills development.

Cut back on technology

Instant feedback and on demand games, videos etc do not help with teaching patience. Technology can be your best friend during enforced waiting but use it sparingly. When tempted to give a child an ipad or your phone make them wait for it. 5 minutes etc. If going on a drive with a screen set a landmark to reach before turning them on.

Anxiety around the thing the child is expected to wait for can make the wait a stressful time. i.e a wait for the dentist can seem endless. Forward planning can help reduce the waiting time. i.e phone ahead to see if the dentist is running late. Prepare the child with key information or a social story before hand.

Have waiting resources

I had a complex class that all struggled to wait for lunch while staff prepared it. I introduced the “wait box”. Very simply a small box of motivating resources that kept fingers and minds busy. These are easy and simple to put together. The key is to limit the time these resources are available for to ensure they maintain interest. If a child has unlimited access to toys they soon lose their interest. How to be patient with a child with special needs

Visuals are essential elements of any classroom. Things like now and next boards can support the understanding that the thing the child is waiting for will happen. Use the templates below to create your own.
How to be patient with a child with special needs

If you say you are going to do something you need to honour it. If a child has waited for something you need to reinforce this success by ensuring they receive it/it happens. Never sanction something a child has completed a wait for. This undermines trust and makes it harder to extend waits in future if needed.

Mindfulness, calm, low arousal environments encourage patience much more than frantic, busy, exciting always on the go ones. We can reduce issues around waiting by slowing down. The army have a saying “Hurry up and wait”. Carefully planned routines where pace is carefully monitored should remove the need for too much waiting.

We would love to hear your ideas for teaching children to wait. Please add these to the comments section!

When it comes to childcare, it takes a special kind of personality to connect with children on their level and build rapport with them. You should enjoy doing things that young children love to do, like exploring, playing, being creative, and messing around, for instance. You need to play with them on the floor, smile, and show sincere affection so they feel they can trust you. To do this, you not only need to love children, but also have a high level of patience.

How to be patient with a child with special needs

In childcare, you can expect your patience to be tested multiple times a day, especially when many children are involved. From changing diapers repeatedly to reading the same story for the 20th time to teaching the child to tie their shoe for the umpteenth time, patience is critical to not only providing quality childcare, but also protecting your sanity.

Here are some other reasons to exercise patience:

Be A Good Role Model

Children learn a lot by imitating the actions of adults around them. So, it is important that you present yourself in the best way possible so they imitate only the good things. If you repeatedly lose your temper for every small thing, then the children will think that that is a normal reaction, and respond in a similar manner to their own frustrations. This is in addition to the standard child tantrums.

Keep You From Burning Out

Besides being a good role model for the children, you need to be patient for yourself. Childcare is stressful, and your patience will be repeatedly put to test. If you become upset every time something happens, you will burn out fast. You will feel drained and limit the number of things you can accomplish every day.

Different Perceptions

You should bear in mind that the perception of children is very different from that of an adult. You cannot expect a child to grasp things or make logical decisions like you would. You may need to repeat something multiple times for the child to grasp it, including finding the right words, using the toilet, buttoning a shirt, or anything else you consider as being basic. It is only with patience and endurance that you and your child can understand each other.

To Show Seriousness Of Different Events

As a caregiver, you will need to uphold your position. You should not lose your temper for small things because, eventually, you will get really angry over something very important, and the child may not necessarily understand the gravity of the situation.

Note that childcare is characterized by schedules, routines, and predictability. Still, you need to be able to respond to unexpected events or crises calmly and patiently. So, always give yourself some room for flexibility to avoid unforeseen events from throwing off your entire day.

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Every child with special healthcare needs in school should have an Individualized Health Care Plan (IHCP). An IHCP helps to make sure your child receives the health services he or she needs during the school day.

There is no law that says your child has a right to an IHCP. If your child has a specific health problem, you should ask for an IHCP.

People who may help create your child’s IHCP include:

  • You
  • Your child (when appropriate)
  • The school nurse
  • Other members of the school staff
  • Healthcare providers
  • Staff from community support services (when needed)
  • The MASSTART vendor in your area (when appropriate)

Contact your child’s school nurse first. Schedule a meeting with the nurse to develop the plan. It is very helpful to involve your child’s primary care provider (PCP). He or she can give the school nurse all the necessary medical information and specific doctor’s orders for your child. If your child is eligible for special education, ask your child’s school nurse to work together with the Special Education Administrator to make sure that services are coordinated.

Your child’s IHCP should include:

  • The health services your child should receive at school
  • When, where, and how the health services will be provided
  • Who will provide the health services
  • Information about your child’s transportation needs, including any special needs when taking field trips
  • An Emergency Response Plan that lists possible emergencies and what to do. This plan should be discussed with all school staff and the local Emergency Medical Services (EMS) providers.
  • A copy of the Emergency Information Form for Children with Special Health Needs

The IHCP should be reviewed and updated whenever your child’s medical condition changes. It is very important that you notify the school nurse immediately when changes happen. The IHCP should be kept in your child’s school record. If your child receives special education, ask to have the IHCP attached to your child’s Individualized Education Plan (IEP). That way the people who provide healthcare services and the people who provide education services can coordinate care for your child. We recommend having your child’s school staff conduct an emergency drill to make sure that the plan works.

This information is provided in part by the Division of Perinatal, Early Childhood, and Special Health Needs within the Massachusetts Department of Public Health and mass.gov.

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We love our patients! We really do. Each of our doctors studied two additional years so they could specialize in pediatric dentistry. They know the key to long-lasting dental health starts at an early age, which is why they are so passionate about helping their patients take care of their beautiful smiles.

The doctors’ main goal is to make sure their patients are comfortable, a task they don’t take lightly knowing that a trip to the dentist (especially that first one) can be intimidating. This can be especially true for children with special needs, and our staff is particularly attentive to these situations.

How to be patient with a child with special needs

Proper dental care is crucial for all children (and adults).

One challenge many parents of special needs children face is having the time to get to the dentist. We are aware of the extra care needed when treating a child with special needs and often times, getting to the dentist isn’t a priority.

In all actuality, maintaining proper dental care is even more important for special needs children, as they are even more likely to encounter dental problems during their developmental years. Certain disabilities can leave your child prone to crowding, misalignment, or malformation, all of which need to be monitored and regularly cared for to prevent larger issues down the road.

Our doctors have many years of experience in treating children with physical and behavioral disabilities, so you can rest assured your child will be getting the best dental care.

We’re here to help!

We aim to provide excellent dental care in an environment your child will enjoy. Believe it or not, most of our patients actually look forward to going to the dentist! You can read some of our testimonials on our website, or stop by our Facebook page for even more feedback from our fantastic patients!

Our priority is to ensure you and your child feel as comfortable as possible and they get the care they need. We know that you, as a parent, probably have questions regarding your child’s dental health. We are here to answer them! Give us a call anytime and we’d be happy to help!

Creve Coeur Office – 314-567-1122 St. Charles Office – 636-946-5225

How to be patient with a child with special needs

Regular medical care is important for all children, but especially for those with congenital heart disease. Your pediatric cardiologist will want your pediatrician or family doctor to check your child regularly.

A child with a heart defect usually gets through common childhood illnesses as quickly and as easily as children with normal hearts. Sometimes parents think that their child with heart disease will need more medicine to get through an illness but this is usually not true. Also, your child doesn’t need antibiotics to help prevent infections with a few notable exceptions (e.g., children with heterotaxy syndromes like asplenia or in some cases of DiGeorge syndrome). Some parents think that giving their child antibiotics before the child is very sick will prevent the illness from getting worse. This also isn’t true and may make the infection more serious and more likely to be resistant to the antibiotic that’s given.

It’s best to remember that preventing infection starts with good hygiene, good nutrition and common sense. Frequent hand washing (or using water-free hand washes) especially during the cold and flu season and avoiding ill contacts is a good way to prevent illness. Try to avoid crowded settings like shopping malls if your child’s doctor is concerned that your child wouldn’t tolerate an infection. You may want to discuss with your child’s doctor or nurse if it’s appropriate to have your child in daycare.

Your child should have routine care and the standard immunizations that your doctor recommends for all children. Your child may also need additional immunizations, such as the influenza vaccine. If your child has certain heart defects, a special monthly immunization for a cold virus (RSV) may be recommended during the winter months.

Learn more about working with your child’s special needs

Checkups With Your Pediatric Cardiologist

Most children with heart defects need periodic heart checkups. Usually, they’re scheduled more often (days, weeks, months) just after the diagnosis or surgery and less often later. For minor conditions checkups may only be needed every one to five years. Depending on your child’s problem, periodic testing may be needed. These tests may include:

  • Standard electrocardiogram
  • 24-hour ambulatory electrocardiogram (Holter scan)
  • Chest X-ray
  • Routine (transthoracic) echocardiogram
  • Transesophageal echocardiography
  • MRI or CT scanning of the heart
  • Exercise stress testing
  • Cardiac catheterization and angiography

Preventing Infective (Bacterial) Endocarditis

Infective endocarditis (IE – also called bacterial endocarditis [BE]) is an infection caused by bacteria that enter the bloodstream and settle in the heart lining, a heart valve or a blood vessel.

Although IE is uncommon, children with some heart defects have a greater risk of developing it. Good dental hygiene goes a long way toward preventing heart infection by reducing the risk of a tooth or gum infection. The American Heart Association has also recently updated guidelines for preventing endocarditis. Your pediatric cardiologist will give you more information about the guidelines.

If you have questions, ask the pediatric cardiologist or nurse.

Physical Activity

Most children with a congenital heart defect can be fully active and don’t need restrictions. In fact, pediatric cardiologists encourage children to be physically active to keep their hearts fit and to avoid obesity. Such healthful activities include swimming, bicycling, running, rope jumping and tennis. For a few specific heart conditions, a pediatric cardiologist may advise that your child avoid some strenuous physical activities and junior varsity or varsity competitive sports.

Nutrition

It’s very important that babies and children with congenital heart defects follow the age-based American Heart Association recommendations for a heart-healthy diet. Your doctor, nurse or other healthcare provider can give you more information. Sometimes babies and children with heart disease need a higher-calorie diet or have special dietary requirements to grow well and stay healthy.

Written by American Heart Association editorial staff and reviewed by science and medicine advisers. See our editorial policies and staff.

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*All health/medical information on this website has been reviewed and approved by the American Heart Association, based on scientific research and American Heart Association guidelines. Find more information on our content editorial process.

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