The information gathered for these questions are a result of the knowledgeable learning environment provided at the Stepping Stones Early Intervention and School Programs.






Frequently Asked Questions:
What is Down syndrome/How does this happen?
Are there different types of Down syndrome?
Is Down syndrome inherited?
How did the doctors know my baby had Down syndrome?
Did I cause my child to have Down syndrome?
Will it happen again to me?
What will my new baby by like?
Are there different degrees of Down syndrome?

Will my baby learn things/reach his/her developmental milestones?
What specialists should I see?
Where can I go for help?
What types of professionals will provide services?
What is Early Intervention?
What is an IFSP?
Where do we start?
How should I break the news to my friends and family?

Does my child need special vitamins or supplements to help give him the best advantage?
What is Special Education?
What is a child with Down syndrome’s life expectancy?
What are the major health issues?
What does it mean to be an advocate?


back to top


What is Down syndrome/How does this happen?
Down syndrome is caused by extra genetic material from chromosome 21. Chromosomes are the structures in cells that contain the genes. There are three types of Down syndrome: Trisomy 21, Translocation, and Mosaicism.

Each person normally has 23 pairs of chromosomes or 46 in all. An individual inherits one chromosome per pair from the mother's egg and one from the father's sperm. When an egg and sperm cell join together, they normally form a fertilized egg with 46 chromosomes.
The three types of Down syndromes are as follows:

Trisomy 21
A developing egg or sperm cell may divide incorrectly, sometimes resulting in an egg or sperm cell with an extra chromosome number 21. When this cell joins with a normal egg or sperm cell, the resulting embryo has 47 chromosomes instead of 46. Down syndrome also is called trisomy 21 because affected individuals have three number 21 chromosomes, instead of two. This type of error in cell division causes about 95 percent of the cases of Down syndrome

Translocation   
Occasionally, before fertilization, a part of chromosome 21 breaks off during cell division and becomes attached to another chromosome in the egg or sperm cell. The resulting embryo may have what is called translocation Down syndrome. Affected individuals have two normal copies of chromosome 21 plus extra chromosome 21 material attached to another chromosome. This type of error in cell division causes about 3 to 4 percent of the cases of Down syndrome.  In some cases, the parent has a rearrangement of chromosome 21, called a balanced translocation, which does not affect his or her health.

Mosaicism
About 1 to 2 percent of individuals with Down syndrome have a form called mosaicism.  In this form, the error in cell division occurs after fertilization. Affected individuals have some cells with an extra chromosome 21 and others with the normal number.
back to top


Are there different types of Down syndrome?

There are three different types of Down syndrome: Standard Trisomy 21, Translocation, and Mosaicism.  See What is Down syndrome/how does this happen” for more details.

back to top


Is Down syndrome inherited?

The vast majority of cases of Down syndrome are not inherited. Only in cases of Translocation Down syndrome and then in only 1 of 3 cases of this type of Down syndrome is the condition inherited. These inherited cases occur because one of the parents is a carrier. It is important that parents have genetic counseling to determine their risk.

back to top


How did the doctors know my baby had Down syndrome?

Many babies with Down syndrome have certain physical characteristics which are common in Down syndrome. These signs occur in up to 80% of all cases. Individual characteristics are often found in children without Down syndrome but the child with Down syndrome will have several. These traits are:

  • the eyes have an upward and outward slant
  • there is a fold of skin on the inner side of the eye (epicanthal fold)
  • the eye slit is narrow and short
  • small, white patches can be seen on the edge of the iris
  • the face has a flat appearance
  • the head is smaller than average
  • the soft spots on the head (fontanels) are larger than normal because the baby is growing more slowly
  • the ears are smaller and lower-set
  • the mouth is small and the lips are thin which leads to the tongue sticking out because the inside of the mouth is smaller
  • the neck appears slightly short and loose folds of skin are seen at the back and sides (these go away as the baby grows)
  • the legs and arms are short in relation to the body
  • the hands are broad and flat with short fingers, the little finger slants inward, and there is a single crease across the palm
  • the feet are broad with short toes and there is a larger space than normal between the big toe and the other toes
  • there is poor muscle tone (hypotonia) and loose-jointedness (hyperflexibility)
  • reflexes tend to be weaker and the cry is weak
  • If a child has six to ten of these signs, the doctor can be almost certain that the child has Down syndrome, and a blood test to analyze the chromosomes will tell for sure.
back to top


Did I cause my child to have Down syndrome?

Simple answer: NO! There is nothing you can do to prevent Down syndrome and nothing you can do to change your odds of having a child with Down syndrome. Down syndrome occurs in all races, in all socio-economic conditions, and in all countries. No relationship between diet or illness and Down syndrome has ever been found. The only established relationship is with maternal age. A woman is more likely to have a child with Down syndrome as she grows older with a sharp rise in risk at 35-40 years of age. However, 80% of all children with Down syndrome are born to mothers under 35.

back to top


Will it happen again to me?

In general, in each subsequent pregnancy, the chance of having another baby with Down syndrome is 1 percent plus whatever additional risk a mother has, based upon her age. If, however, the first child has translocation Down syndrome, the chance of having another child with Down syndrome may be greatly increased.  

back to top


What will my new baby by like?

He will be like a baby. He will be 100% reliant on you for everything, just like all other babies are reliant on their parents. He will eat, sleep, and go through lots of diapers. He may have some medical problems and he may have weak muscles but he will definitely be cute and adorable and he will be the most beautiful baby ever born.  You will also notice that your baby will look like he belongs in your family. He will look like his brothers and sisters although he will probably have some of the traits associated with Down syndrome, as well. Remember, your child's chromosomes come from his parents.

back to top


Are there different degrees of Down syndrome?

This is a frequent question.  When one asks about the word “degree” it is assumed the person is asking how much of a cognitive impairment or developmental delay the person with Down syndrome will have.  A person with Down syndrome will have a cognitive impairment as a result of having the disability. The degree of cognitive impairment and or developmental delay may range from mild to severe based on the individual’s own genetic make-up, early intervention, therapy, and support.  It is more typical that an individual’s cognitive delay will be in the mild to moderate range of functioning. 

back to top


Will my baby learn things/reach his/her developmental milestones?

YES! Your baby will learn to do all the things that other children learn to do but it will take her a little longer and it will take a little more patience on your part. She will learn to walk, she will learn to dress herself, feed herself, use the toilet, hold conversations, make friends, develop a range of interests, read, and go to school.

Your new baby will be like every other baby although it may take him longer to reach certain developmental milestones. Developmental delays are common in children with Down syndrome although at a young age, the delays are usually a matter of a few months. With proper early intervention, these developmental delays can be minimized. Studies have suggested that some children with Down syndrome who are receiving early intervention may actually achieve developmental milestones sooner than some children without Down syndrome. For example, the average "normal" child will be able to complete a 3-piece jigsaw puzzle at around 22 months. Some children with Down syndrome achieve this goal as early as 20 months (although the average is 33 months). Early intervention through programs like the Stepping Stones Early Intervention Program and a stimulating and loving environment will help your baby.

back to top


What specialists should I see?

Your pediatrician will recommend certain tests, some of these tests are:

  • Cardiac evaluation
  • Thyroid function (blood test)
  • Ophthalmologic evaluation.
  • Click on to this website for more detailed recommended evaluations by the
  • National Down syndrome congress: www.ndsc.org

It is so helpful to connect with a health care provider who is familiar with Down syndrome.  A developmental pediatrician may be a good option or a facility such as The Judy Center for Down syndrome at Hackensack University Medical Center in New Jersey where staff members work closely with primary care providers. 

back to top


Where can I go for help?

The Stepping Stones Early Intervention Program will provide you with support, information, resources, and most important – the specialized techniques necessary to help your baby develop his/her greatest potential.

In addition, under federal law, states are required to provide early intervention services to infants with disabilities from birth to age three. After age three, federal law requires states to provide appropriate special education services. Help can be received from either public or private sources. Public services can be obtained by contacting your state Health or Education departments. Private services may be covered by health insurance.

back to top


What types of professionals will provide services?

At the Stepping Stones Early Intervention Program you and your child will be working with a highly trained team of professionals who specialize in working with children who have Down syndrome.  An array of Physical, Speech, and Occupational Therapists work together as a strong collaborative team to ensure that the comprehensive needs of your child are met.  The following describes the forte of each therapist:

A Physical Therapist will work on improving your baby's gross motor skills. The therapist will be concerned with muscle tone, reflexes, stability, and motor development.

An Occupational Therapist concentrates on fine motor skills. The occupational therapist will be concerned with your baby's ability to reach and hold objects. The Occupational Therapist will also be concerned with your baby's processing of information through vision, touch, hearing, and movement.
A Speech Therapist will concentrate on how your baby uses the muscles of the mouth and face to eat and to make sounds.

The Speech Therapist can be a resource for problems dealing with feeding. As your baby grows, the Speech Therapist will help your baby make sounds and form words appropriately.

Mental Health Professionals include social workers, counselors, and others who can provide counseling and emotional support to your family. Many early intervention programs include parent support groups which give parents an opportunity to share information and seek advice from other parents.

Through the State/Federally funded early intervention services your child may be working with a professional call an Infant Educator or developmental interventionist.  An Infant Educator or Developmental Interventionist (DI) is a teacher /early intervention professional trained to work on your child's cognitive ability. The Infant Educator or DI will focus attention on your baby's development and determine if that development is proceeding typically. Areas of concentration for the Infant Educator or DI might be responsiveness to stimulation, social development, and ability to understand concepts. The Infant Educator or DI may work with you to help you learn the techniques to improve your baby's abilities.

A Developmental Pediatrician is a doctor with specialized training in childhood development

back to top


What is Early Intervention?

Early Intervention services, birth to three years of age, help babies who have Down syndrome and other cognitive impairments develop to their full potential.  Early Intervention means parents along with Physical Therapists, Occupational Therapists and Speech Therapists enhance a child’s development and provide a way for parents to track their child’s progress.  The normal developmental sequence of children is used as a guide and the therapists provide information on development as well as teach parents specific techniques to facilitate the child’s development at home.  The Early Intervention services at Stepping Stones are private center based services provided by professionals who specialize in working with children who have Down syndrome and other similar cognitive delays.  Your child will be taught in a group environment where important socialization as well as specific techniques to enhance development are learned.  As the parent you are in the unique position of being part of a parent group led by a trained social worker where peer collaboration, support, resources, knowledge, and information are exchanged.  A main focus of the educational learning in these groups is to provide you with the knowledge you need to be the best and most effective advocate for your child.

back to top


What is an IFSP?

If you choose to utilize the federal/state funded early intervention services, your child’s services will be driven by the development of an IFSP. The Individuals with Disabilities Education Act (IDEA) requires that an Individualized Family Service Plan (IFSP) be completed for every child eligible for early intervention services. The IFSP must be completed by either a state or local government agency. The IFSP will include your child's strengths and needs, your family's resources and concerns, and the services to be provided. Whatever services your child is to receive must be outlined in the IFSP. The IFSP must also include family services such as:

  • helping parents learn how to teach their child with Down syndrome and
    other developmental disabilities

  • helping siblings learn to cope with their new baby brother or sister
    The IFSP must be reviewed every six months.
back to top


Where do we start?

As soon as the diagnosis of Down syndrome is received, we recommend that you contact the Stepping Stones Early Intervention Program where support through trained professionals and parents are a phone call/email away.  Through our Parent to Parent support component of the Early Intervention Program, parents are connected with veteran parents who know exactly what you are feeling and experiencing. In addition, no matter how young your child is, our experienced professionals can guide you in the most effective ways to work with your child.

In addition you have the option to contact an early intervention program in your area. Information about federally/state funded early intervention programs can be received from your doctor, your local school district, your state or county health or education departments, other parents of children with Down syndrome, or your local chapter of Arc.
Important things to remember:

  • No matter what your financial situation or work schedule – make sure you visit the Stepping Stones Early Intervention Program
  • You are the consumer of a service provided by the early intervention program. The therapist works for you and your baby.
  • If you do not understand something about your child or the services your child is receiving, ask the therapist to explain. The therapist should answer all your questions in a way that you can understand.
  • Keep copies of everything and get notes from every therapist after every visit. These notes will help you track your baby's development.
  • Write down every question you have before the session with the therapist and write down every answer. No one can be expected to remember everything.
back to top


How should I break the news to my friends and family?

Some people prefer to tell people as they come into contact with them; others have sent out a group email to everyone.  The main thing to remember is that people will take their cue from you.  This is not a secret or shameful thing, and if you let people know that, everyone will feel more comfortable.  You might find yourself angry at people’s reactions (or lack of reactions).  Your anger is a normal part of the adjustment process. Some people will be angry if they get the sense that people are “pitying” them.  Some people will be angry if they aren’t getting enough pity.  The truth is, your anger actually has little to do with other people. 

back to top


Does my child need special vitamins or supplements to help give him the best advantage?

The National Down Syndrome Society has not endorsed any special vitamins or targeted nutritional intervention. Talk with your pediatrician who will most likely advise you to give the vitamins and supplements you would give to a typical child, at their appropriate age. 

back to top


What is Special Education?

Special Education means instruction specifically designed to meet the unique needs of the child with disabilities, including as necessary classroom instruction, physical education, home instruction etc.  Special education teachers, therapists and other professionals are responsible for delivering these services to your child at no cost to you.  School aged children with Down syndrome, depending upon their needs, receive their educational services through a variety of options: in a regular classroom with non-disabled peers, only going to separate classrooms for special services (speech therapy) that cannot be provided in the regular classroom; in special classes, but join the rest of the school for many activities; an out of district placement such as the Stepping Stones School where children are educated with their peers who have similar needs.  In out of district placements, children are afforded the opportunity to develop, learn, and grow in an environment that is sensitive to their specific needs.  A school like Stepping Stones focuses on providing each student with a strong base of foundation skills so that successful transitions can be made to less segregated educational placements.

back to top


What is a child with Down syndrome’s life expectancy?

In the past , the medical problems associated with Down syndrome resulted in shortened life spans, today, however, there are advanced medical treatments for every medical problem babies with Down syndrome may have.  Many are now living into their sixties with an improved quality of life.

back to top


What are the major health issues?

The outlook for individuals with Down syndrome is far brighter than it once was. Most of the health problems associated with Down syndrome can be treated.  Individuals with Down syndrome are more likely than unaffected individuals to have one or more of the following health conditions:

  • Heart defects
  • Intestinal defects
  • Vision problems
  • Hearing loss
  • Infections
  • Thyroid problems, leukemia and seizures
  • Memory loss

Some individuals with Down syndrome may have a number of these problems, while others may have none. The severity of these conditions varies greatly.

back to top


What does it mean to be an advocate?

To be an advocate means that you as the parent are able to effectively negotiate systems and services in order to obtain the needed supports to best meet your child’s needs.  To be an effective advocate you as the parent may need to have a significant knowledge base of the systems and laws for which your child is or should be receiving services; however, you are not alone – the Stepping Stones Programs are here to help you.  Parents often feel overwhelmed by the amount of information and time that is needed to be an effective advocate for their child.  Support through attending the Stepping Stones Programs are an invaluable resource to help one become the best advocate for their child.  Keep in mind that you are the team leader throughout your child’s life journey.  As this leader – be confident in your ability to be the best advocate for your child.

back to top