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New and expectant parents

expectant mother

New Parents

We are all individuals, no two parents or babies are exactly the same. Your baby is unique. Even though he/she shares some physical resemblance, some characteristics and a test result stating he/she has extra genetic material with other babies with Down syndrome your baby is still his/her own person, with a very unique character and very specific likes and dislikes. Enjoy this new addition to your family.

Early Intervention

The first years of life are a critical time in a child’s development. All young children go through their most rapid and developmentally significant changes during this time. During these early years they achieve the basic physical, cognitive, language, social and self-help skills that lay the foundation for future progress. These abilities are attained according to predictable developmental patterns. Children with Down syndrome typically face delays in certain areas of development, so early intervention is highly recommended. It can begin any time after birth, at DSAWC we usually start after the six weeks check-up.

WHAT IS EARLY INTERVENTION?

Early intervention is a systematic programme of therapy, exercises and activities designed to address any developmental delays that may be experienced by children with Down syndrome or other disabilities. The most common early intervention services for babies with Down syndrome are physical therapy, speech and language therapy, and occupational therapy.

How can I get in touch with other parents of children with Down syndrome?

One of the best ways to meet other parents is to get involved in a local Down syndrome parent support group. These groups can provide you with an excellent forum for sharing your feelings and concerns as a new parent, and an opportunity to learn from the experiences of others who have been in your shoes. Learning more about Down syndrome can also help ease some of your uncertainty, and support groups are a great place to start gaining knowledge. In addition to providing emotional support, other parents can recommend useful Down syndrome resources and organisations and help you understand the new terminology. DSAWC has several Outreach groups as well as Parent connection evenings and other activities for parents and children, please make contact with us and help us help you.

Congratulations on the birth, or expected birth, of your baby! You probably have many questions, and we would like to let you know that this is a perfectly normal reaction, it is o.k. This is a new journey you are embarking on, one where you will not always have the perfect road map, where you will make decisions for your baby not knowing if you are doing the right thing.  This is a journey that will astound, frighten and teach you. Be kind to yourself and others who share this journey with you. Gather information, speak to other parents, speak to organisations like us and prepare yourself as best as you can but always listen to your inner voice, and always remember that you know your child best. You are the parent/s, you will grow with this baby. And this beautiful baby will show you what he/she is capable of.

 

IS WHAT I’M FEELING NORMAL?

Learning that your baby has Down syndrome is not an easy thing for anyone to face, and right now, you may be experiencing a roller coaster of emotions. While everyone handles the diagnosis in their own way, certain reactions are common in new or expectant parents of a child with a disability. For the majority of parents, the period immediately following the diagnosis is filled with uncertainty and doubt. For example, you might worry about how the condition will impact your child’s life and whether or not you are equipped to handle all the responsibilities of raising a child with a disability. If your child has health complications, you may have additional fears and concerns. It is natural to experience denial, anger, depression and other stages of grief as you adjust to the news that your baby has Down syndrome. Parents will often go through a mourning process. The life you have pictured has been altered and you need to work through this loss. Do not add guilt to this mix. You are allowed to be angry, to be upset, to mourn and work through it. There is no time limit, some parents will come to terms with their new reality very quickly, while others take longer. You are not a bad parent because you need time. Even for parents who knew they were at a higher risk of having a child with Down syndrome or have received a positive diagnosis, acceptance can be difficult or, at first, seem impossible.

It is very normal to worry about some day and one day….but take it one day at a time. A baby with Down syndrome has exactly the same needs as any baby without Down syndrome. They need to be loved and cared for. At the age of six weeks if your baby is healthy start with an early intervention programme. Your baby will need all the help he or she can get to develop to his/her full potential.

Know that whatever you may be feeling is normal. More importantly, know that you are not alone. In time, and with the right support, you can expect the intensity of painful emotions to subside and new, positive feelings to take their place. One of the best places to turn to for encouragement and reassurance is other parents of children with Down syndrome. Often, other parents can help you look beyond your baby’s diagnosis and find delight in the joys of parenthood. They have been through what you are going through, and can be an invaluable source of support.

 

Read more: A parent’s perspective on having a child with a disability

Read more: What parents can do to take care of themselves

HOW WILL DOWN SYNDROME AFFECT MY BABY’S DEVELOPMENT?

An additional chromosome means that there is excess genetic material in your baby’s cells. While this will affect your child’s development, it is important to realize that it is not a blueprint that determines his or her potential. Down syndrome is a condition your child has – it’s not who your child is. As is true for all people, the skills and knowledge he or she acquires will be a unique combination of innate abilities and life experiences.

There are, however, certain health and developmental concerns commonly associated with Down syndrome. Individuals with Down syndrome are at an increased risk for certain health conditions. Babies, in particular, are more likely to have heart problems, hearing loss and respiratory infections; however, advances in medicine have rendered the majority of these health problems treatable.

All people with Down syndrome experience delays in their cognitive and physical development, however, cognitive delays are usually mild to moderate, and they are not indicative of the many strengths and talents that each individual possesses. Higher integrative abilities such as the ability to think abstractly and to form concepts are likely to be affected. Low muscle tone and other physical characteristics associated with Down syndrome can affect how soon your baby will be able to sit up, walk and speak. Rest assured, though, your child will learn to do these and many more activities, only possibly somewhat later than his or her peers without Down syndrome.

Most individuals with Down syndrome learn self-help skills but will continuously need assistance. This level of assistance will differ from person to person due to ability as well as how independent you are raising your child. A person with Down syndrome can function well within a community. They can secure employment, often in the competitive job market, especially through supported work programmes.

Good medical care and early intervention can provide a strong foundation for your child’s optimal development.

 

A HEALTHY START

One of the main questions on the minds of many new parents is, “Will my baby be healthy?” Many babies with Down syndrome are born without any health problems. However, it is true that new-borns with Down syndrome are at a higher risk for certain complications. While your baby may not have any of these potential complications, it is important to be aware of them so you can catch them early if they do occur.

New-borns with Down syndrome are at a higher risk for congenital heart defects, hearing and vision loss, respiratory problems, obstructed digestive tracts, childhood leukemia, and other health conditions. They also have an increased susceptibility to infection. Doctors routinely screen for these conditions because some, such as a heart defect, may be present even if no symptoms are readily apparent. While the list of possible health problems can be frightening, keep in mind that your baby will not necessarily have all, or possibly any, of them.

If he or she does happen to have one or more of these complications, advances in medicine have rendered most conditions treatable. For instance, the majority of heart conditions can be corrected through surgery. You can ensure your new-born’s optimal development through informed health care. There is a tremendous amount of information available, so it is important not to let yourself get overwhelmed. Learn at your own pace, and try to focus on those things you can do in the present to get your baby off to a good start.

Growth and health checks for children with Down syndrome:

Growth and Health checks.pdf - July 2017 6:51 PM

 

WHEN SHOULD I START WITH EARLY INTERVENTION AND WHAT ARE THE BENEFITS FOR MY BABY?

Early intervention should begin any time shortly after birth and can continue until the child reaches the age of 7 or enters a pre-school programme. The sooner early intervention begins, the better; however, it’s never too late to start.

Development is a continuous process that begins at conception and proceeds stage by stage in an orderly sequence. There are specific milestones in each of the four areas of development (gross and fine motor abilities, language skills, social development and self-help skills) that serve as prerequisites for the stages that follow. Most children are expected to achieve each milestone at a designated time, which can be calculated in terms of weeks, months or years. Because of specific challenges associated with Down syndrome, your baby will likely experience delays in certain areas of development. Rest assured that he or she will achieve each of the same milestones as other children, just on his or her own timetable. In monitoring the development of your child with Down syndrome, it is useful to focus on the sequence in which milestones are achieved rather than the age at which they are achieved.

Please contact DSAWC if you want more information with regards to our Early Intervention Programme.

Here you can find a developmental milestones chart

 

SHOULD I BREASTFEED OR BOTTLE FEED MY BABY WITH DOWN SYNDROME?

You may be aware of the tremendous benefits that breastfeeding provides to new-borns. Breast milk contains natural antibodies that fortify babies’ immune systems. This is especially important to infants with Down syndrome, who have higher rates of respiratory and other infections. Breast milk can also reduce bowel problems, which are more common in babies with Down syndrome, and contains an ingredient known to promote brain growth and development.

In addition, the physical process of breastfeeding strengthens babies’ jaw and facial muscles, which helps lay a good foundation for speech and language development, and provides skin-to-skin contact, a form of sensory stimulation that creates neural connections that can facilitate future learning.

There are many great reasons to breastfeed, but whether or not to do so is a personal choice. Some mothers breastfeed exclusively while others bottle feed. Still others combine the two. There are many factors that play into this decision, including whether or not you feel your body is producing enough milk, whether or not your baby has health complications, and whether or not you plan to return to work soon after delivery.

If you do plan to breastfeed, be aware of certain factors that might make it challenging. Babies with Down syndrome have low muscle tone, so it may be difficult for your baby to “latch on” to your breast at first. As babies with Down syndrome also tend to be sleepier than other infants, you will likely have to make an extra effort to raise your baby’s alertness and keep him or her awake throughout the entire feeding. Also, if your baby needs surgery, he or she may require a feeding tube for a short time.

Don’t worry, though. There are organisations and individuals that can help you get started and provide tips for overcoming these and any other challenges you may encounter.

Here you can find a list of lactation consultants and support groups.

These same specialists can help you learn how to pump, store and transport your breast milk, or how to select the right baby formula to meet your infant’s needs if you choose to bottle feed.

When it comes to feeding, the important thing is to make the choice that is best for you. Feedings should provide quality time for a parent and child to bond, so they should always be as comfortable and stress-free as possible for both individuals. A meeting with your hospital’s lactation specialist is a great place to start learning about what feeding option may be right for you.

 

WHAT ABOUT ALTERNATIVE THERAPIES?

As a parent, you no doubt want to give your child every opportunity to realise his or her life aspirations and lead a fulfilling life. You will likely come across lots of information about various alternative therapies as you research Down syndrome. Parents often get excited about claims that particular treatments can improve motor and cognitive functions or other areas of development, and many invest a lot of hope and money in these treatments. While this is understandable, be aware that although there have been many popular therapies through the years, none have been scientifically proven. In fact, some have been proven ineffective or even harmful.

When considering any potential therapy, be sure to discuss it with your pediatrician or GP. Ask for copies of current research studies that support the therapy’s claims and consider the following questions:

  • Is the therapy documented as safe and effective?
  • Are the claims realistic?
  • What are the credentials and background of the person promoting the therapy? (For example, is he or she certified by a professional organisation?)
  • Does the person have financial interests in the sale of the therapy?
  • Is the therapy expensive or overly demanding of your family’s time?
  • What are the risks and side effects, and do they outweigh the potential benefits?

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