FAQs

Have a question for us?  See if we have answered it here.  If not, be sure to email us and someone will respond as soon as possible. 

What does GRAND STRAND DOWN SYNDROME SOCIETY do?

Our organization raises awareness and helps individuals with Down Syndrome and their families connect through programs both educational and social! For a list of specific programs and services we provide, visit our Programs and Resources links. 

HOW CAN I BECOME INVOLVED WITH gsdss?

We’re always on the lookout for people who want to get involved.  One way you can do so is to become a member of our organization.  The invitation to become a member is open to those with Down syndrome or family members and caregivers, or ANYONE who is interested in Down syndrome.  You may also wish to become a volunteer, to apply to become a board member, to donate, and much more.  Be sure to contact us to let us know how you would like to serve.

If I were to donate funds to GSDSS, how is my money used?

We take it seriously when someone donates their hard earned money or their precious time to our organization.  Our mission is important to our community, so we work hard to ensure that our organization is sustained for the long haul.  Currently we provide new parents with materials and support, and we strive to implement ways for families and kids to connect. 

Some of our programs include swimming, social gatherings for kids ages 4 and under, for school age kids, and for adults over 21. 

What is Down Syndrome (DS)?

Typically a person has two copies of each chromosome (one from each parent). Someone with Down syndrome receives an extra copy of chromosome 21, meaning they have 3 instead of 2. This is why it is also called Trisomy 21 or T21.  You can read more here. 

Are there different kinds of DS?

Yes, we are glad you asked!  As we mentioned above, in most cases of Down syndrome, the person has three copies of chromosome 21 in each of the cells of their body. 

If Mosaic Down syndrome occurs, the extra copy occurs during early cell division after conception.  When this happens, some cells will have T21, and others won't.  Mosaic Down syndrome may or may not have an effect on the features or abilities of the person, as people with Down syndrome can display a wide range of effects.

The rarest form of DS is called translocation. In this type of T21, the extra copy of chromosome 21 is attached to another chromosome.  The difference between translocation Down syndrome is that T21 is a phenomena- it is like winning the lottery, while translocation Down syndrome is inheritable and can be passed down through families.  If someone is worried about having more children with Down syndrome, they should speak with a genetic counselor to learn more about their specific case.

What are some issues that my child with DS may have?

While your child with Down syndrome will have many talents and beautiful features, he or she will likely have some delays in development in comparison to typically born children.  It is possible they will have cardiac or thyroid issues, and should closely monitored by their healthcare professionals.  People with DS also usually have low muscle tone, which can often be improved with the help of various therapies (such as physical therapy, speech therapy, or occupational therapy). 

Will my newborn with DS be able to breastfeed?

Many newborns with DS do breastfeed.  However, low tone in newborns with DS may hinder their ability to breastfeed sufficiently.  Some may need to supplement with bottles or feeding tubes. Seek out a lactation consultant for advice on how best to assist you and your baby with breastfeeding.

How do I find other parents who have children with DS?

Well, you have started in the right place!  Here at the Grand Strand Down Syndrome Society you will find many families who are walking in your shoes.  You can contact us by filling out a contact form from this website and request to be put in touch with someone.  Don't forget to find us on Facebook as well.  Connecting with other families who have been where you are can really help everyone involved.

What is BabyNet?

BabyNet is South Carolina’s interagency early intervention system for infants and toddlers under three years of age with developmental delays, or who have conditions associated with developmental delays (http://scfirststeps.com/babynet/). BabyNet will provide a list of agencies from which you may choose to provide Early Intervention (EI) services for your child. BabyNet will cover the cost of your EI and any other therapies for which your child qualifies up to the age of 3.

How do I get in contact with BabyNet?

Your pediatrician can refer you to BabyNet or you can call them directly. If you have a prenatal diagnosis, you will not need to contact them until after your baby is born.

What is the approval process like for BabyNet?

With a diagnosis of DS, your child will automatically qualify so the process is fairly simple. You will go to the BabyNet offices, show records of your child’s diagnosis, and fill out appropriate paperwork. You will then have a few days to choose your EI provider.

What is an Early Interventionist (EI)?

An Early Interventionist (EI) will help you and your child navigate this new world. He or she will create an Individualized Family Service Plan (IFSP), help coordinate therapies as needed, and possibly provide help with your TEFRA application. They will usually meet with you twice a month (more or less often if you choose) to do play therapy with your child and check in with your needs and goals.

How do I choose an EI?

BabyNet will give you a list of providers in your area. You can call those that you are interested in, check for appointment availability, and gauge how well you feel you fit with each one. Choose the one you feel most comfortable with who also has availability in your expected time frame.

What if I am not satisfied with the EI or the EI agency?

You can change EIs if you do not feel they are a good fit with your family. You can change within the agency or change agencies altogether.

What is an Individualized Family Service Plan (IFSP)?

The IFSP is a written document that, among other things, outlines the early intervention services that your child and family will receive. One guiding principal of the IFSP is that the family is a child’s greatest resource, that a young child’s needs are closely tied to the needs of his or her family. The best way to support children and meet their needs is to support and build upon the individual strengths of their family. So, the IFSP is a whole family plan with the parents as major contributors in its development. Involvement of other team members will depend on what the child needs. These other team members could come from several agencies and may include medical people, therapists, child development specialists, social workers, and others. (source: http://www.parentcenterhub.org/repository/ifsp/) The IFSP will apply until the child is age 3 at which point the IEP will be put in place.

What is TEFRA?

In 1981, the federal government created the Katie Beckett waiver, named after the child who inspired it, which allowed children to receive institutional care at home while retaining their Medicaid coverage, regardless of parents’ income. In 1982, the Tax Equity and Fiscal Responsibility Act (TEFRA) expanded the waiver. (source: https://www.scdhhs.gov) Approval for TEFRA provides a state Medicaid insurance for your child that will cover therapies and medical expenses as long as the child lives within South Carolina.

How do I apply for TEFRA?

Contact the Healthy Connections office (https://www.scdhhs.gov). You can seek help with your application from Family Connections (http://www.familyconnectionsc.org/).

What are some tips to a successful TEFRA application?

Approval for TEFRA depends upon showing delay or disability worthy of the coverage. Though a diagnosis of DS should be enough to qualify, it is not automatically so. When filling out the application, list every specialist and doctor that your child has seen or is scheduled to see. Do not exaggerate abilities during your interview. It’s hard not to be a proud parent and celebrate every minor victory but when asked, “Can your child dress himself/herself?” answer honestly. Is he helping put in arms in the shirt, maybe. Is that dressing himself? No.
TEFRA will not depend upon your income but it does depend upon your child’s. Do not have any money in your child’s name. Make sure family is aware of this so they do not purchase savings bonds or start bank accounts in your child’s name. This can result in denial of coverage.
If you are denied coverage, find out why you were not approved. You may be able to send information that was missing or otherwise amend your application for approval.
When approved, you will not have to reapply but you will have to sign a form each year asking to continue coverage. Look out for this form every year and return in quickly to avoid losing coverage.

For what therapies do most kids with DS qualify?

Most children with DS will qualify for services from a physical therapist (PT), an occupational therapist (OT), and a speech language pathologist (SLP). All of these therapies are play-based. These therapies will be done in your home and covered by BabyNet. Some therapists can go to your child’s daycare if required.

What does an occupational therapist (OT) do?

The OT will work on fine motor skills. This will start with basic grasping and move toward skills necessary for skills such as writing, feeding, buttoning a shirt, etc. This therapist will also work on hand eye coordination. Some OTs may help with feeding issues if present.

What does a physical therapist (PT) do?

A PT will work on gross motor skills. This will start with tummy time building core strength to move towards sitting independently, crawling, walking, climbing stairs, etc.

What does an speech language pathologist (SLP) do?

The SLP will work on developing skills for speaking. This may start with using sign language. They will work on both receptive and expressive language. Like OTs, some specialize in feeding issues and can help work on those if required.

What other therapies are available?

Other therapies that some find productive (but may not be covered by BabyNet) are music therapy and water/swim therapy.

What happens to my BabyNet services when my child turns 3?

At age 3, your EI will facilitate your transition from BabyNet to the school system. Your child will be evaluated and any OT, PT, or Speech for which they qualify will be provided by the school system. This is often in a preschool setting 2-3 hours a day. This varies county to county. You have the option to opt in or out of these services. You may also continue to see your private therapists.

Can I keep my EI after my child turns 3?

Yes, if a child has a delay in two or more areas, based on the assessment from the EI or DDSN (if they haven't been in BabyNet) then DDSN will qualify a child until they are five for continued family training and service coordination services. The 3-5 years helps families bridge the gap before kindergarten. DDSN doesn't pay for the therapies so TEFRA is helpful here.
You can also get a case worker/coordinator though Family Connections to help you after you outgrow your EI.

What is an Individualized Education Plan (IEP)?

You'll have your first Individualized Education Plan (IEP) when your child turns 3. At that point, their services (most likely PT, OT, and Speech) will go through the school system instead of BabyNet. You'll have annual IEPs throughout their school career where you will discuss their needs or delays, your goals for them, and what accommodations they may need to achieve those goals. Your IEP team will be made up of yourself (and your child when appropriate), their teachers, therapists, counselors, and administrators. The purpose of the team is to determine how best to ensure your child’s success and then implement that strategy. They can be daunting but when you get the right team together and have everyone communicating, it can do wonders for the student's success.

What is the MUSC Down Syndrome Clinic?

The MUSC Down Syndrome Clinic is a collection of specialists focusing on the needs of children and young adults with DS. At the clinic, you will see a pediatrician, OT, PT, SLP, and ENT. Because this is a medical university, you may also see students in any of those fields as well. While you are there they will also test you’re your child’s hearing and do bloodwork to check the thyroid. It is a whirlwind appointment usually lasting around 3 hours.

This clinic is a way to check on the major aspects of our child's development, make any suggestions for therapies or medical treatments as needed, and in general try to make sure nothing falls through the cracks. You will go there every 6 months while your child is an infant/toddler starting at age 6 months. After age 3, you will go once a year.
General tips when you do go: bring snacks for you (and whatever baby may be eating at that point), bring whatever will keep baby happy/entertained during a long appointment with often long gaps between specialists, write down questions that you want to ask so you do not forget them in all the business of the day, and bring any current evaluations from other therapists as it can help speed things up if baby/child is less than cooperative/awake.

How do I get an appointment at the MUSC Down Syndrome Clinic?

Your pediatrician can send a referral to the clinic or you can call for an appointment yourself.

Did I do anything wrong to cause my baby to be born with Down syndrome?

No way! There is nothing you did to cause your baby to be born with Down syndrome. Those born with Down syndrome receive their extra chromosome at conception (or shortly afterwards) as a result of an error in cell division, in either the egg or sperm. The reason why the extra genetic material causes Down syndrome is not currently known.

Do I need a “special” pediatrician to care for my child with Down syndrome?

Your pediatrician for routine care does not need to be a "Down syndrome specialist".  It is more important for you to choose a doctor you are comfortable with and who is willing to learn with you. American Academy of Pediatricians site for Down syndrome.

What should I be doing to help my baby?

Soon after birth, early intervention specialists from Baby Net, including physical, occupational, and speech therapists, will guide you in how to promote your baby’s progress.  These efforts will help your child to make tremendous progress. It is also nice to connect with other parents who have been in your shoes, to get additional advice. They are often the best source of information for people and programs that can help maximize your child’s potential.

How do I explain Down syndrome to my other children?

We recommend a terrific book, We’ll Paint the Octopus Red, by Stephanie Stuve-Bodeen for preschool and early elementary aged children.  The story is easy to understand and there is a question and answer section in the back that addresses many concerns that a young child may have.  Our resources page will also offer you many additional pieces of advice.

Are there special programs for children with Down syndrome?

There are programs available for people with Down syndrome in all stages of development.  These include early intervention (Baby Net), preschool programs, free appropriate public education in the least restrictive environment, therapy, post-secondary school options, employment training, and a wide array of social and support programs. MUSC in Charleston, SC also conducts Down syndrome clinics to follow your child’s health for the first several years.

What is included in these special programs?

Most incorporate speech, physical, occupational, and music therapy along with educational approaches.  The goal is to lead the individual with Down syndrome toward greater independence and to give them the opportunity to develop their individual potential.  With the right supports, most individuals with Down syndrome have a great chance of becoming integral members of their community.

What about family members?

Parents, siblings, and other family members are encouraged to participate in support groups and organizations that will help them to understand the needs and potential of their family member with Down syndrome.  The Grand Strand Down Syndrome Society is one of these organizations.

Do people of all ethnic groups and of all economic levels have Down syndrome?

A child with Down syndrome can be born to anyone, regardless of age, race, socio-economic status, or where they live.  Down syndrome occurs in approximately one out of every 691 births in the United States.

Are people with Down syndrome different from the rest of us?

People with Down syndrome are more like average persons than they are different.  First and foremost, they are individuals with their own personalities.  They have unique talents, characteristics, abilities and disabilities, just like the rest of us.  They are brothers, sisters, husbands, wives, friends, and neighbors.  They work in banks, schools, offices, and restaurants.  They would like you to know “We’re More Alike Than Different.”

I’ve heard that people with Down syndrome don’t live long — what is the life expectancy?

In 1929, the average life expectancy was 9 years, but with awareness, better health care, and community resources, many individuals with Down syndrome now live into their 60′s. As medical care continues to advance, the life span of many individuals will be even longer.

Is there a cure for Down syndrome?

No, there is no cure.  The extra chromosome will remain in cells throughout the person’s life.  Early intervention, high quality health care, good educational opportunities, appropriate nutrition, and many other interventions make a huge difference in the individual’s life, however.

If I have a child with Down syndrome, will I have another?

Not necessarily, but advanced age is a risk factor. The type of Down syndrome your child has is also a factor. A Robertsonian Translocation could indicate a familial origin. Genetic counseling is available to answer questions like this for particular individuals.

Will my child walk, talk, etc.?

Unless there is another condition that is present, almost all individuals with Down syndrome do learn to walk and to talk.

If you have additional questions and would like to talk to someone from the Grand Strand Down Syndrome Society, please contact us. Sometimes we can even pair you with families who are willing to hold your hand in the process.