6 Tips for Parents and Siblings

By: Brett Braza, DSAW Marketing Intern

Raising a child with Down syndrome may present you with new and diverse challenges.  Specifically, it might require a huge adjustment for the siblings of your child with Down syndrome. This blog posts gives three pieces of advice for parents regarding their typically-developing children and three pieces of advice for siblings of individuals with Down syndrome. 

3 Tips for Parents

1)    Explain The Situation

Make sure to sit down with your child and explain the situation of how having a child with Down syndrome might require more attention. Define what Down syndrome is and how it affects your child as a big brother or sister. Acknowledge that just because they have Down syndrome does not mean their sibling should be treated any less or are not capable to do anything their heart desires

2)    Spend Time With All of Your Children!

Since all children are unique and have varying levels of individual needs, it is difficult to balance the time evenly between them. Instead, we recommend you make it a point to spend time with each of your children on a daily basis. Children with Down syndrome may require more attention, but devoting special time to their siblings will help the others feel valued.

It is important to pay attention and track the mood changes of your children. A new addition to the family can cause huge influxes in emotion. Acknowledge their feelings and ask how they are personally feeling about this new adjustment. If signs of depression or a heightened level of anxiety emerge, make sure to provide your child with help or resources available as soon as possible.

3)    Do Not Give Your Other Children Too Many Responsibilities

Although sometimes it may be nice to have an extra hand to help you out in caring for your child with Down syndrome, it is recommended you do not push for older siblings to carry too many responsibilities. Giving your child special tasks involving the new sibling, however, may lead to quick acceptance.

3 Tips for Siblings of Individuals With Down Syndrome

1)    Be Patient

At first, it might be a huge change to add a new brother or sister to your family. An individual with Down syndrome may require more attention right away and that’s okay. There might be a shift in attention towards the new baby, but that does not mean your parents or anyone else loves you any less. Additionally, your sibling might have a harder time learning how to read or walk, but that does not make them any less. As an older sibling, be patient, because this new sibling will look up to you for all you do.

2)    Be Understanding

Down syndrome does not define a person. In fact, a sibling with Down syndrome is more alike than different.  They have hobbies and interests, just like you! They like to laugh and play. Although they might have Down syndrome, you should know they are capable of so much, and they will exceed expectations in incredible ways. Make sure to cheer them on along the way!

3)    Let Them Love You And Love Them Back

Having a sibling with Down syndrome is not a bad thing or something to be embarrassed about—you should know that by gaining a sibling with Down syndrome, you are gaining a friend who will provide unconditional love and happiness. They care so much about you and want to know everything about you—they just want to be your friend!

A new sibling in the family can be challenging for any young kid. Hopefully these tips can provide guidelines or at least provoke ideas about how to handle a similar scenario!

Information gathered from the following resources:

https://www.ndss.org/resources/caring-for-your-family/.

https://themighty.com/2014/11/things-you-understand-when-your-sibling-has-down-syndrome/

Breast-feeding Your Baby

Created by Marianne Pastore, RN MassGeneral Hospital for Children

BREAST-FEEDING BASICS

All babies benefit from breast-feeding or receiving breast milk. Breast-feeding can:

• Promote eye and brain development

• Lower the risk of Sudden Infant Death Syndrome (SIDS)

• Improve mouth and tongue coordination, which will help speech skills

• Create a special bond with your baby

There are, however, special benefits for babies with Down syndrome:

• Babies with Down syndrome have a higher risk of infection. The mother’s body makes antibodies, which she passes on to her baby during breast-feeding. Antibodies help protect your baby against infection.

• Breast milk is very easy to digest, and this is helpful for infants who may have stomach problems related to Down syndrome.

• Skin to skin contact during breast-feeding helps stimulate babies who have low muscle tone, or weak muscles.

GETTING STARTED

When any baby learns to breast-feed, it takes time and patience. Getting off to the best start helps you and your baby succeed with breast-feeding.

•  Start breast-feeding as soon after birth as possible.

• Have skin to skin contact with your baby as much as you can. Touch helps increase the breast-feeding hormones. A baby is also likely to begin rooting or nuzzling at the breast and may actually latch-on when having skin to skin contact.

• Feed your baby often, 8 to 12 times in 24 hours, including feedings during the night.

• Get comfortable before you start to feed.

• Position your baby so their body and chin are well supported. This is especially helpful for a

  baby with low muscle tone. The nurses will help you with this in the hospital.

• Know where to go for help and support after you leave the hospital.

IS MY BABY GETTING ENOUGH MILK?

You can be sure your baby is getting enough milk if you watch for the following:

• Your baby should be breast-feeding 8 to 12 times in 24 hours

• After a week, your baby should have 6 to 8 wet diapers and 3 bowel movements that are yellow, soft and seedy

• Your baby with Down syndrome should gain at least 4 ounces per week

BREAST-FEEDING CHALLENGES

Babies with Down syndrome may face some special challenges that might affect breast-feeding. There are many things you can do to work through these challenges and have success.

 

Low muscle tone

Your baby may have low muscle tone, or weak muscles, especially in their tongue and lips. To help babies with low muscle tone during breast- feeding, do the following:

• Keep your baby’s body and chin well supported
• Support the base of your baby’s head with your hand. Too much pressure on the back of your baby’s head can cause a poor latch.

 

Sleepiness

Your baby may be extra sleepy, which can affect feeding patterns. Babies who fall asleep may also not get enough milk, especially the end milk or “hind milk.” End milk has extra fat and calories which help your baby to grow.

• Dim the lights in the room so your baby doesn’t have to close his or her eyes against the light

• Remove all of your baby’s clothing except the diaper to help keep him or her alert

• Wash your baby’s face with a wet cloth

• Gently stroke and talk to your baby during the feed

• Compress and massage your breast while breast-feeding. This will help the milk flow and keep your baby interested in breast-feeding. 

 

Tongue Thrusting

Babies with Down syndrome may have a protruding tongue that pushes against your nipple. To help these babies breast-feed, try the following:

• Wait for your baby to open wide (like a yawn) with his tongue forward and down

• Gently press down on your baby’s chin. Opening the jaw will help the tongue come forward.

• Teach your baby how to keep his or her tongue down. Put your index finger on the center of your baby’s tongue. Push down and gently pull your finger out.

• Allow your baby to suck on your finger so he develops rhythmic sucking rather than biting.

   

WHAT IF MY BABY IS NOT BREAST-FEEDING?

Some babies might not breast-feed while at the hospital. Your medical staff can help you create
an individual feeding plan to make sure your baby gets all the nutrition he needs to grow and thrive. After you leave the hospital, you will meet often with your pediatrician who will help make changes to the feeding plan as needed. During this time, it is important to build and protect your milk supply. Building a milk supply usually happens if your baby is breast-feeding a lot. If your baby is not breast-feeding, the medical staff will help teach you how to get a double electric breast pump and how to pump your breasts. In the end, some babies do not breast-feed. However, giving your baby your breast milk from a pump will still give your baby all the wonderful benefits.

 

SUPPORT

Your nurse in the hospital will help you with breast-feeding. She will also arrange a visit with
a lactation, or breast-feeding, consultant during your stay. The more help and support you have, the more successful you will be. It is important to check with your pediatrician to see if they have a staff member who can help with breast-feeding or make a referral to someone who can. Ask your nurse in the hospital for available resources. Zipmilk.org is a great website that can provide you with Lactation Consultants, La Leche League Groups and other support groups in your community.

This is intended to provide health related information so that you may be be er informed. It is not a substitute for a doctor’s medical advice and should not be relied upon for treatment for specific medical conditions. 

Birth Announcement

It can be hard to know how to announce the birth of your baby to friends and family. Take a look at our sample birth announcement to give you some ideas:

Hello everyone! We are happy to report the birth of Evan Michael. He joined us yesterday at 2:36pm. Mom is recovering well and is likely headed home tomorrow. Evan weighed in at 7 lbs 1 oz and was 19.5 inches long.

We’d also like to share some additional news we learned shortly a er he was born - Evan has been diagnosed with Down syndrome. The last day has been an emotional rollercoaster but we are all doing well. After spending some me learning more about DS, we know that Evan will be a wonderful addition to our family and we are looking forward to watching him reach his own milestones just as his sister has done herself.

We realize that our announcement may prove a little awkward for some - some we’ve told in person have a hard time knowing what to say. “Congratulations” works just fine! The past 24 hours have made us realize how lucky we are to have the support of many caring family and friends and we look forward to sharing Evan with everyone.

If you’d like to learn more about Down syndrome, we encourage you to check out online resources, such as the Down Syndrome Association of Wisconsin or the National Down Syndrome Society. After reading about DS, we hope you’ll know, as we do, that Evan can and will have an amazing life.

We promise to report back soon with pictures and an update!! 

Questions About Birth to Three

What is Birth to Three, and what is its purpose?

Birth to Three is Wisconsin’s Early Intervention program. The concept of “early intervention” is quite simple. If a child with a developmental delay receives proper help early on, problems in the future may be minimized. A child, his/her family, and the educational system will benefit by the reduced need for long-term intervention throughout the child’s school years.

What kinds of things will my child with Down syndrome do in Birth to Three?

Your child will participate in a variety of activities planned by licensed therapists, teachers, and nurses. The setting for these activities -- which are designed to provide physical, occupational, and speech therapies as needed -- may include regularly scheduled home visits, play group activities, individual therapy at home, daycare or hospitals, or other combinations that work for your family. You child’s record will be kept confidential.

Will I have any say regarding my child’s participation in any of these therapies?

Absolutely! After eligibility is determined (and most children with Down syndrome usually qualify), the Individualized Family Services Plan (IFSP) is written with help from the parent(s) and services begin.

When should my child start Birth to Three Services?

Some families choose to enjoy their babies and adjust to life with a new little one before jumping in. Others choose to start therapy right away. Ideally, a baby would start therapies within the first 8 weeks of life if that works in your family schedule.

Is there an age limit to receiving Birth to Three services?

The age limit is newborn to three years. 

Types of Therapies

Pediatric Physical Therapy (PT) is the treatment of children with physical disabilities by a licensed professional physical therapist who is educated and trained in the diagnosis and treatment of children with physical disabilities. The goal of PT is to improve care and provide a treatment program to obtain or restore the highest level of independence and function in quality of movement, walking, strength and endurance, gross motors skills, posture, positioning for functional skills, coordination, and mobility for the child with the disability.

Pediatric Occupational Therapy (OT) is the treatment of children with physical, emotional, and/or intellectual disabilities from birth to 21 by a licensed occupational therapist educated in a variety of diagnoses and therapies for such children. The goal of OT is to help make learning possible by helping children develop the underlying skills that will lead to independence in personal, social, academic, and vocational activities. This includes remediation of difficulties the child may encounter with ADLs (Activities of Daily Living) such as dressing, grooming, feeding, etc.

Pediatric Speech Therapy addresses the child’s complete communicative needs. This often begins with the development of non-verbal communicative skills such as attending to the speaker and the activity, taking turns, and making appropriate eye contact. It is designed to help with speech disorder, often referred to as articulation or phonological disorders - problems with the way sounds are made or how sounds are sequenced to form words; oral-motor problems resulting in difficulty producing speech sounds; and delays in feeding skills. A speech-language pathologist is a specialist in the normal development of human communication. The Certificate of Clinical Competency (CCC) assures you that a speech-language pathologist has been qualified to provide clinical services by the American Speech-Language Hearing Association (ASHA). 

For more helpful tips for new and expectant parents, check out the digital version of the Parent's First Call Magazine.

This blog post is sponsored by Dries Painting. Thank you for your support!