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Raising Children with Special Needs: Our Stories | Part II

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Written by Dr. Sherry Huang, MD, FAAP

This month, we are sharing stories written by our patients who have children with special needs. These stories were inspired by an essay entitled Welcome to Holland, written by Emily Perl Kingsley about her experience raising a child with special needs.

The Special Needs Team in the pediatric department has learned so much about the joys and struggles of wonderful and committed parents. Here is part two of Our Stories:

 


 

My daughter makes me feel that I am a lucky person.

I have a 16 year old daughter. She has epilepsy and delays in neurodevelopment. Many Chinese parents do not know what ‘special needs’ means, and I was one of them.

When my daughter was six months old, I noticed that she never moved her eyes, they just stayed to one side. Besides that, she seemed fine. At the time, I did not bring her to see the doctor for just that reason. Then, when she was ten months old, her whole body began shaking. This is how I started my special life journey.

She started to have delays in walking and speech, needed to be hospitalized and to see the doctor regularly for MRI’s and many EEGs. She also needed speech therapy and occupational therapy. I did not know anything about these treatments, and definitely not in English. She stayed at a specialized school and I was not sure if that was good for her. I did attend all the parent-teacher conferences and meetings. It was not until she was in 5th grade that I started to understand the special needs system.

In the past 16 years, I didn’t know how many tears that I had, and I was extremely tired. My family’s support and understanding was crucial, otherwise it would have been too much to bear. Over time, I began to understand her needs, and she has brought me happiness. Because of her, I learned that every special needs child is different. She allows me to learn the many things that I would not have otherwise known. Through my daughter, I met new parents. I learned the roles of a special need parents and their rights.

Currently she is enrolled in a private school, a very good school. My daughter makes me feel that I am a lucky person. Because of her, I learned about the special needs group at the Charles B. Wang Community Health Center. Because of her, I realized that I am never alone—I have assistance and support.


 

At that moment I held her tight.

I can often relate to the Chinese proverb, “Raising a child is for life”, especially because I am a mother of two autistic children. What we had gone through is beyond what words can describe. But today, I want to share with you that even though it was difficult, there were also heartfelt moments.

My daughter rarely shows her emotions. There was an incident two years ago that significantly changed how I see her. That day, I was sitting on the sofa in the living room and she was sitting across from me playing with her toys. I was peeling an apple and happened to cut my finger. I reacted with a slight, “Agh!” I could not believe what happened next—she stopped playing with her toys, came over and blew on my finger. She then pushed away my bangs, gave me a kiss on the forehead and smiled. I was very emotional at that moment and I held her tight.

For some parents, such a small gesture may not cause a rush of emotions. Her actions were enough to move me. After that day, I decided to use all my love and energy to reach out to her. I believe one day she may allow me into her world.

 

Dr. Sherry Huang is pediatrician and member of the Pediatric Special Needs Team at the Charles B. Wang Community Health Center. She received her medical degree and residency training from the New York University of Medicine. Dr. Huang is board-certified in pediatrics.


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Raising Children with Special Needs: Our Stories | Part I

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Written by Dr. Sherry Huang, MD, FAAP

When I joined the Charles B. Wang Community Health Center, I was fresh out of residency training. I loved the work that I was doing and loved giving back to the community where I grew up. I learned a lot from my wonderful colleagues in the pediatric department. However, as I started seeing more patients, I found myself lacking knowledge and resources to provide better care to families with children with special needs. These families have children with conditions such as autism, developmental delay, epilepsy, or down syndrome, and they all need extra special care and support.

As our health center was becoming certified as a Level 3 Patient Centered Medical Home, we took this opportunity to create a Special Needs Team in our department to improve the care that we provide for these families. Fast forward 4 years, 19 monthly Parent Advisory Groups meetings, many staff trainings and parent workshops, and 9 parent support groups later, and I feel proud that we, along with our parents, have created a system that seeks to care for our patients in a way that is holistic and compassionate. By coordinating care and working closely with specialists, social workers, therapists, educators and community providers, we try to provide the best care for those families who strive every day to help their children reach their best potential.

Parents of children with special needs have incredibly inspiring stories to tell. Recently, we shared with our Parent Advisory Group an essay entitled Welcome to Holland, written by Emily Perl Kingsley about her experience raising a child with special needs.

Inspired by this essay, our parents have written their own, in Chinese, about their experiences. Our team has learned so much about the joys and struggles of these wonderful and committed parents.

We will be sharing some of these stories with you this month to celebrate National Autism Awareness Month. Here is part one of Our Stories:


When my daughter is absolutely happy, the feeling is like taking a vacation in Hawaii

Thank you to the Health Center for providing and sharing the article “Welcome to Holland”. After reading the article, I was touched. It reminds me of my own situation, which is caring for a special child at all times. It also enlightened me on ways I can care for my child.

I struggle every morning to get my daughter to brush her teeth and wash her face. It’s a simple task, yet it stresses me incredibly. To keep the problem from getting worse, I continue to look for a right method to teach her. That takes patience, persistence, and practice, but hopefully it will get better one step at a time.

Sometimes she throws a tantrum for no reason. During times like this, it’s like the aftermath of a battle where things are in disorder and the future is uncertain. At times like this, we try to avoid escalating the problem and to minimize the damage. After things calm down, I think back to how the problem began, what I did well, what I didn’t do well, and how I can do better next time.

When my daughter is absolutely happy, she often laughs and hugs us. The feeling is like taking a vacation in Hawaii—where one is relaxed, joyful and stress-free.

These kinds of situations, where my daughter’s emotions fluctuate, happen for a reason. This is because she is a special needs child. I need to have an infinite amount of patience, love, energy and time to cope with the situation. It’s also important for me to continue to learn how I can better care for her. The more that I know, the better parent I can be to support her. That way, I can be on vacation more often.


When they grow up, they will understand that we care about them

We have two children, a 20 year old son and a 16 year old daughter. My daughter has autism and developmental delays. She has changed my life. Sometimes, my emotions fluctuate with my child’s temper. I can only look forward to the future, hoping that tomorrow will be better as I continue to seek more services to assist my daughter.

Sometimes my friends ask, “You’re spending so much time with your daughter, do you feel that your son is neglected?” We do consider his feelings and explain to him why we need to spend a lot of time taking care of her. We use dinnertime to chat and talk about school, friends and the news. Sometimes we argue, especially during those years when they were more rebellious. But when they grow up, they will understand that we care about them. That way, when they are happy or sad, we hope they will share their feelings with us. We encourage them to have their own interests and make more friends. These discussions also allow me to know my children’s personalities, their values and how they interact with others.

Dr. Sherry Huang is pediatrician and member of the Pediatric Special Needs Team at the Charles B. Wang Community Health Center. She received her medical degree and residency training from the New York University School of Medicine. Dr. Huang is board-certified in pediatrics.


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Keeping Your Kids Active in the Cold

Active Kids

Written by Dr. Carolyn Chang

Just because it is cold outside does not mean you and your family have to wait until spring to be active. Kids should be active for 60 minutes a day. There are many fun indoor and outdoor activities in the city to help you and your family stay active during the remaining weeks of winter—here are just a few ideas.

Indoor Activities

  • Work out or play sports at a recreational center. The Department of Parks & Recreation has the most affordable recreational centers in New York City, with programs and facilities for all ages. Check out NYC Parks website to learn what community centers are in your neighborhood.
  • Spend the day at a museum. Did you know that many museums are either free or have free days? Check out this list put together by NYC & Company.
  • For those really cold days, you do not have to leave your home to be active. Try one of these indoor exercises that you can do from your own home.

Outdoor Activities

  • Go to your local park for some snow fun. Build a snowman or make snow angels.
  • Check out your local ice skating rink.
  • Take walks in your neighborhood.

When you are having outdoor fun, be sure to bundle up, wear several layers and replace all wet clothing with dry ones after coming inside. For those long afternoons outside, consider keeping an extra pair of mittens in the pockets. Take breaks from time to time to come inside for warm drinks or food. With the right precautions, you can help your child stay safe while staying active during the wintertime.

Written by Dr. Carolyn Chang. Dr. Chang is a pediatrician at the Charles B. Wang Community Health Center. She received her medical degree from Washington University in St. Louis, and completed her residency training at Albert Einstein College of Medicine-Children’s Hospital at Montefiore. Dr. Chang is certified through the American Board of Pediatrics.


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National Children’s Dental Health Month – Taking Care of Your Child’s Teeth

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Written by Sunnie Deng

Did you know that baby teeth are as important as adult teeth? When baby teeth first appear, they are already at risk for decay or cavities. Although baby teeth are not permanent, it is still important to take care of them because they help your child chew and talk.

In some cases, an infant’s or toddler’s tooth decay becomes so severe that the teeth cannot be saved and need to be removed (this is sometimes called baby bottle tooth decay). The good news is that there are many ways to prevent tooth decay. Here are a few tips.

Cleaning your child’s teeth

  • Begin cleaning your baby’s mouth during the first few days after birth by wiping the gums with a clean, damp gauze pad or washcloth.
  • After feeding, rub the gums and teeth with a damp gauze pad or baby’s toothbrush.
  • Caregivers should start brushing a child’s teeth as soon as they appear in the mouth using grain-of-rice size amount of fluoride toothpaste.
  • Use pea-size amount of fluoride toothpaste for children 3-6 years old. Children under 6 should be supervised and helped to ensure they do it properly and do not swallow toothpaste.
  • Caregivers can teach their child to floss when all the baby teeth have come in, usually around 2- 2 ½ years old.

Your child’s first dental visit

  • Bring your child to the dentist as soon as the first tooth begins to appear.
  • The American Dental Association recommends that a child’s first visit to the dentist should take place within 6 months of first tooth appearance, and by the age of 1 at the latest.
  • Try to schedule an appointment in the morning when the child is more rested and tends to be more cooperative.
  • Never bribe your child or use dental visit as a punishment.
  • The earlier your child sees a dentist, the easier it will be to prevent tooth decay.

More tips on children’s dental health

  • If your child needs a comforter, give a clean pacifier. Never give a pacifier that has any sugary liquid on it.
  • Dilute juices to reduce sugar your child drinks.
  • Avoid candy, dried fruits, and other sticky surgery items that will cling to your child’s teeth.

Help your child prevent tooth decay and other dental problems with good dental habits, regular dental checkups, and giving surgery treats in moderation. Be an active role model and encourage your child to practice good oral health habits for life!

Sunnie Deng is the dental program associate from the Charles B. Wang Community Health Center. She graduated with a Bachelor of Science degree from New York University and currently pursuing an MPH from Mount Sinai Medical School.


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Cold Season is Here – What You Need to Know About Cold Medicine Safety

cold season

This time of year brings holiday excitement, winter fun and sometimes the sniffles. There is no cure for the cold, but there are over the counter medications that can help relieve some of its symptoms. If you are treating a child who has a cold, we want to provide important information on cold medicine safety during this cold season.

If your child is an infant or under four years old.

If your child is under four years old, it is important to know that giving cough and cold medicines is not safe and may cause life-threatening side effects. See our fact sheet on Cold Medicine Safety for medicine that should never be given to infants and children under four, here.

If you use cough and cold medicines for children four years old and older.

  • Always read labels before buying our using medicine. Do NOT give children medications that are labeled for adults.
  • Make sure to read and use the recommended dosage that is on the label.
  • Use only the measuring spoons or cups that come in the box or those made for measuring drugs. You do not want to give your child more than what the medication says on the label—and this is the safest way to avoid that.
  • Check the “active ingredients” section of the Drug Facts label. Each ingredient is intended to treat certain symptoms. Make sure the medicine you are using treats the symptoms your child has.
  • Be very careful when giving more than one medication to a child. Two medications may have the same “active ingredient”. If you use multiple medications with the same ingredient, your child will get more doses than what is recommended.
  • If the symptoms do not get better in a few days, bring your child to the doctor.

What else can you do if your child has a cold?

If your child is younger than 3 months, call or see the doctor at the first signs of a cold. If your child is 3 months or older, you can usually treat cold symptoms at home.

  • Give plenty of fluids to your child.
  • Run a humidifier to moisten the air.
  • Seek medical help right away if your child’s cold becomes more serious.

When in doubt on how to treat your child, be sure to call your pediatrician.


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Sexual Health Month – Protect Your Child From HPV

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Written by Dr. Carolyn Chang

For National Sexual Health Month, we want to talk about the Human Papilloma Virus (HPV), the most common sexually transmitted infection among both women and men. There are many different types of HPV. While some are harmless, others can lead to cancer in the cervix, genital warts, or infections of the mouth and throat. HPV is the most common cause of cervical cancer.

How do I get HPV?

HPV is spread during vaginal, oral, or anal sex with an infected partner. There are often no symptoms, so you may not even know if you are infected.

Can I prevent HPV and cervical cancer?

Yes! The HPV vaccine protects against the types of HPV that are most likely to lead to cervical cancer and genital warts. The vaccine, which is given as a series of 3 injections over 6 months, has been tested to be safe and effective, with no serious side effects. The HPV vaccine is recommended for all girls and boys ages 11 or 12. It may be given starting at age 9, and even if you were not vaccinated as a child, you can still receive the vaccine until age 26. To learn more about the HPV vaccine, check out this great info-sheet from the Centers for Disease Control and Prevention (CDC).

Why do children need this vaccine when they are so young?

The HPV vaccine is more effective when given to girls and boys before they start having sex and are potentially exposed to HPV. This gives them more time to build up protection from HPV infection.

Should boys also get vaccinated?

Yes! Boys are also at risk for HPV infection and can and should be vaccinated. Boys can receive the HPV vaccine until the age of 26, if they were not previously vaccinated.

Talk to your doctor or your child’s doctor for more information about the vaccine. If your child is a patient of the Charles B. Wang Community Health Center, make an appointment to have your child vaccinated today.

To learn more about sexual health, you can check out some of our resources online. You can view them here.

Written by Dr. Carolyn Chang. Dr. Chang is a pediatrician at the Charles B. Wang Community Health Center. She received her medical degree from Washington University, and completed her residency training from Albert Einstein College of Medicine-Children’s Hospital at Montefiore. Dr. Chang is certified through the American Board of Pediatrics.