Parents Corner

  1. Home /
  2. Parents Corner
New to Williams Syndrome

First Steps

Get the Facts!

You may have just received a positive diagnosis for Williams Syndrome (WS) for your child.  This page provides an introduction to WS and gives some pointers to what supports your child may need growing up.

You are beginning a journey of discovery about WS and how WS will affect your child.  In time you will become an expert on this subject and the more you learn the better you will be equipped to support your child.

Please give yourself time to plan for the challenges and facilitate the upsides that will come your way.  Remember that children with WS have wonderful and endearing personalities who will make a great contribution to your family and the community in time.  Like everyone it will take time you and your child to find their way.

What is William Syndrome?

Williams Syndrome (WS) is a genetic condition present at birth that can affect anyone.  It is caused by a small deletion of genetic material which occurs spontaneously at the time of conception. It is a totally random event that is not hereditary. There is nothing parents could have done, or not done, to cause their child to have WS. Children with WS tend to have certain physical traits, have distinctive features and they may be subject to certain medical conditions.  They are also highly social, friendly, compassionate  and endearing. People with WS also typically have some level of learning disability and they may experience high levels of anxiety in certain situations.

How will WS Affect Your Child?

Unfortunately the answer to this question is not straightforward.  Your child will have many characteristics that are directly related to WS, and just as many that are not.  It is important to remember that your child is an individual first and foremost just like every other child. However he or she also has Williams Syndrome and this will lead to additional characteristics in your child that are not shared by others in your family or typical of most other children you know.

Do Many People in Ireland have WS?

Having a child  with WS is an extremely rare event (1:7,500 of the general population) .  However, in Ireland,  WS is underdiagnosed so that  the known occurrence rate is approximately  1 in 20,000 .  This means that there are people in Ireland  who are unaware that they are affected by WS.   Parents of a child with WS are no more likely to have a subsequent child with WS than any  other parent in the general population

Diagnosing WS

Many individuals with Williams Syndrome remain undiagnosed or are diagnosed at a relatively late age. This is of concern since individuals with Williams Syndrome can have significant and possibly progressive medical problems. When the characteristics of Williams Syndrome are recognised, referral to a clinical geneticist for further diagnostic evaluation is appropriate. The clinical diagnosis can be confirmed by a blood test. The technique known as fluorescent in situ hybridisation (FISH), a diagnostic test of the DNA, detects the elastin deletion on chromosome #7 in 95% to 98% of individuals with Williams Syndrome.

How Can I Support My Child

As with all children the key to well being starts with a loving and stable home environment.  Beyond that there are many interventions that will help  ensure that your child develops to the best of their ability.   Learn about WS and tailor your support to suit your child’s needs.  Things to consider include:

  • How health concerns need to be monitored or managed at every stage of life.
  • How early intervention, such as speech therapy, occupational therapy and physical therapy is invaluable.
  • How learning disabilities make navigating the education system challenging and how specific education plans are to maximise your child’s opportunities. You should read  ‘A Guide for Professionals  Working with WS Individuals’  also available from WSI  and discuss its contents with your child’s  educators at the appropriate stage.

You should also go to our ‘Guide for Professionals’ page which provides a brief guide of professionals working with individuals with WS.

Where Can I Find a Practical Guide to WS

A good starting point is to contact Williams Syndrome Ireland  (WSI).   Here you will be able to make contact with parents of children who have already experienced the many challenges posed by WS and you will get to meet people with WS at every stage in life and understand some of the issues but also the joys of life with WS.  Annually WSI organises a range of events for our members and you can use these events to tap into the knowledge and experience for every stage of your child’s development. Please get involved in some of our activities or events to gain a wider understanding of WS people and the WS experience of parents, educators and other professionals.

See leaflet on ‘A Guide for Parents of Individuals with Williams Syndrome’.

Link to Page for Membership

What are the Medical Implications of WS?

WS & Health

Health services you can avail of
HSE Site

Many people with WS lead  long and healthy lives and life expectancy is not affected by having the condition.  However, to stay healthy and well ii is essential that  people with WS are given regular medical check ups  with a particular focus on certain medical issues that can be more common among the WS population.  If your child is under 18 years then it is essential that that medical check ups are performed by a paediatrician.  If the person with WS is over 18 then your family doctor should carry out the annual check up.  There are a number  of  key medical conditions that require regular monitoring for people with WS.   These include certain  heart conditions, high calcium levels (which may cause feeding difficulties for infants), high blood pressure, hernias, poor muscle tone and kidney/bladder Issues.  Your child or loved one may not have any of these conditions but regular monitoring is recommended Children and people with WS are also likely to have some dental issues and these should be examined regularly by your dentist.  You may be referred to other specialists to provide the best support as the need arises.

A good  starting point on health issues is the HSE site at www.hse.ie.

HSE Disability Services

A good starting point regarding health aspects of disability is the dedicated HSE page of Disability Services which can be accessed via the link below:

HSE DISABILITY SERVICES  

Please read the section called ‘If you have just found out your child has a disability’ at:

HSE LINK

Primary Care Centers

Check out the HSE Primary Care web page which provides details of primary care services in your area.  Primary Care encompasses all of the health or social care services that you can find in your community, outside of hospital. It includes GPs, Public Health Nurses and a range of other services. They provide a single point of contact to the health system.

Children’s Disability Services

You will need to familiarise yourself with the disability services that are provided by the HSE.  Click button below to visit HSE Disability Services site
HSE Disability Services

Primary Care Centers

Early interventions such as speech therapy, occupational therapy and physical therapy can be  invaluable in supporting your child’s development.  The HSE website provides information on Early Intervention Teams which located around the country.  These teams provide services for children, aged 0-6 years, and their families who have complex developmental needs. The team comprises of an Occupational Therapist, Psychologist, and Speech and Language Therapist: See HSE information on Primary Care teams:

PRIMARY CARE TEAMS

Early Education

WS & Education

Education information

NCSE

Tailored early education is an essential approach for children with WS.  Please read ‘Guidelines for Professionals working with Individuals with WS’ to familiarise yourself with best practice approaches for teaching children with WS. We recommend that you obtain this guide in leaflet form from WSI  and discuss its contents with your child’s  educators at the appropriate stage.  For a complete guide on supporting children with WS please consult the book ‘WiSHES’ by Dr Fionnuala Tynan, CDU, MIC , Limerick

National Centre for Special Education

To understand national policy and initiatives on special education look at the National Centre for Special Education.
NCSE

National Educational Psychological Service (NEPS)

At some point it may be useful to engage the services of the NEPS unit in the Department of Education.  NEPS psychologists specialise in working with the school community. They work in partnership with teachers, parents and children in identifying educational needs. They offer a range of services aimed at meeting these needs, for example, supporting individual students (through consultation and assessment), special projects and research.

WS & Allowances

Social Welfare Benefits

There are a number of allowances for which parents/carers of WS individuals may be eligible

Domiciliary Care Allowance

Domiciliary Care Allowance is paid by the Department of Social Protection in respect of disabled children under 16 years who require care and attention which is considerably in excess of that normally required by a child of the same age. Eligibility is determined primarily by reference to the degree of care and attention required by the child rather than to the type of handicap involved. The parents‘ means are not taken into account when assessing eligibility. However, the child’s means are assessable.

Carer’s Benefit

Carer’s Benefit is a payment made by the Department of Social Protection to PRSI-insured persons who leave the workforce to care for a person in need of full-time care and attention. Where a Domiciliary Care Allowance is being paid in respect of a child, no further medical certification is required. The payment is made for 65 weeks and can be claimed in separate periods subject to a minimum of 6 weeks for any given period.

Carer’s Allowance

Carer’s Allowance is a means-tested payment made by the Department of Social Protection to carers on low incomes who live with and look after certain people in need of full-time care and attention. If the person being cared for is under 16, a Domiciliary Care Allowance must be payable in respect of this person. The recipient of the allowance is entitled to a Free Travel Pass in his/her own right, Free Telephone Rental Allowance, and may also qualify for Free Electricity / Natural Gas / Bottled Gas Refill Allowance, Free Television Licence and Medical Card.

Respite Care Grant

A Respite Care Grant is payable on the first Thursday in June to carers to cover the cost of respite care. The payment can be used as the carer sees fit.  Those in receipt of a Domiciliary Care Allowance, a Carer’s Benefit or a Carer’s Allowance automatically receive this payment.  Those not in receipt of the above are still eligible to apply.   If the relevant allowance is not awarded till after June you should still be entitled to the Respite Care Grant for that year – enquire at your local Social Welfare Office.

Disability Allowance

An individual with WS who is over 16 may be eligible for Disability Allowance – A weekly allowance paid by the Department of Social Protection to people with a disability who are aged between 16 and 66. The allowance is subject to both a medical suitability and a means test. Persons for whom Domiciliary Care Allowance is being claimed will automatically be invited to claim Disability Allowance before reaching age 16. Recipients of the Disability Allowance automatically receive a Free Travel Pass(and may qualify for a Companion Pass) and may also qualify for a Medical Card from the Health Service Executive.

WS & Taxes

Tax Issues Associated with Disability

People with a disability such as WS  may be entitled to certain benefits and or tax relief.

Incapacitated Child Tax Credit

Incapacitated Child Tax Credit can be claimed by a parent/guardian for a child who is permanently incapacitated, either physically or mentally, from maintaining himself or herself. Further information is available on the Revenue’s website at Revenue or your tax office.

Home Carers Tax Credit

Home Carer’s Tax Credit is available to one-income families where one spouse stays at home to care for dependent children, the aged or incapacitated persons.

Incapacitated Person – Credit for Employing a Carer

This tax credit may be claimed if you employ a person to care for an incapacitated relative. It must be claimed annually.  The credit is based on the cost of employing the carer.

Information Accessing National Services

The Citizen Information Board, which is the national agency responsible for supporting the provision of information, advice and advocacy to the members of the public on social services, has issued a very informative booklet called ENTITLEMENTS FOR PEOPLE WITH DISABILITIES.  It can be obtained free of charge from any of the Citizens Advice and Information Centres around the country, by simply phoning them directly on 1890 777 121 to have your copy posted to you or by emailing info@ciboard.ie. It can also be read online via the “Publications” section of the website – at this link.

Information for Persons with a Disability

Revenue Information
Social Media Info

Social Links

Join the network for additional support

Find social groups in your area that can be useful outlets for each stage of your child’s development.  In some cases.  In addition you ,ay some organisations that provide free or discount access for your child.  A good place to look for these outlets can be found at the Special Needs Parents Association at http://specialneedsparents.ie/.

Social Media Support

Social Media provides a key learning support for WS parents. We recommend that you join WSIs Facebook page and follow us on Twitter at the following links.

WSI FACEBOOK

@WS_Ireland

Williams Syndrome is a rare condition and it is therefore best to also tap into international WS organisations who can provide a wider range of experiences than WSI on its own.  Here are some link to some key WS organisations worldwide:

FACEBOOK WS USA

FACEBOOK WS Page UK 

The Mighty (a support group for people with health challenges) https://themighty.com/

Social Links

Get your questions answered

Frequently Asked Questions

What causes Williams Syndrome?

Williams syndrome is caused by a spontaneous genetic deletion. That means it’s not caused by anything the parents may have done during pregnancy or at any other time. The deletion in Williams Syndrome generally includes a small stretch of 26-28 adjacent genes on chromosome 7, including the elastin gene. Usually, when someone is born with Williams Syndrome, he or she is the only member of the extended family that has the condition.  But, when a person with Williams Syndrome has a child, there is a 50:50 chance that each child will inherit the condition. Here in Canada, a geneticist will often request that parents are tested to rule out this rare family connection.

Did I do something to cause Williams Syndrome in my child?

There is nothing you could have done, or not done, to cause your child to have Williams Syndrome. Williams Syndrome is typically caused by the spontaneous deletion of 26-28 genes on chromosome #7. Usually, a Williams Syndrome diagnosis is the first one in a family, however, a person with Williams Syndrome has a 50:50 chance of passing the disorder on to each of his or her children.

What is the cause of Williams Syndrome?

Williams syndrome is not caused by anything the parents did or did not do either before or during pregnancy. Williams Syndrome is caused by the spontaneous deletion of 26-28 genes on chromosome #7.  The deletion occurs at the time of conception.  It is likely that the elastin gene deletion accounts for many of the physical features of Williams syndrome. Some medical and developmental problems are probably caused by deletions of additional genetic material near the elastin gene on chromosome #7. The extent of these deletions may vary among individuals.  In most families the child with Williams syndrome is the only one to have the condition in his or her entire extended family. However, the individual with Williams syndrome has a 50% chance of passing the disorder on to each of his or her children.

How is Williams syndrome diagnosed?

The clinical diagnosis can be confirmed by a blood test. The technique known as fluorescent in situ hybridization (FISH), a diagnostic test of the DNA detects the elastin deletion on chromosome #7 in more than 98% of individuals with Williams Syndrome.

A new diagnostic test for Williams Syndrome is called micro-array analysis.  This test not only identifies the elastin deletion but can provide additional information on the precise size of the deleted area on chromosome #7.

Many individuals with Williams Syndrome remain undiagnosed or are diagnosed at a relatively late age.

Does Williams Syndrome have a cure?

Currently, Williams Syndrome does not have a cure. There are treatments (ranging from supportive care to interventions) for many medical complications of Williams Syndrome, including the cardiac conditions that are often present. Early intervention, appropriate therapies and educational support optimize your child’s developmental potential and enjoyment of life.

Is there a treatment for Williams Syndrome?

Williams Syndrome is complex. A team of educated medical doctors and therapists should participate in your care team. Regular monitoring is important to attend to the potential health issues that are associated with the syndrome. For instance, it is not uncommon for individual with Williams Syndrome to experience cardiac issues, feeding issues or slow growth as babies. Your geneticist or paediatrician will make referrals to all the relevant specialties. In addition to medical doctors, different therapies such as physiotherapy, occupational therapy, speech therapy, music therapy, specialist advice and psychological therapy can help to address some of the additional issues associated with the condition. Evidence shows the earlier intervention starts, the better the future prospects.

My child’s test confirmed Williams Syndrome. Now what?

Williams Syndrome is associated with a number of health concerns  some of which can be serious. You will want to have your child evaluated for these typical issues first. For instance, you child should be referred to a cardiologist if they have not already been assessed for cardiac issues. Most children do not experience all the potential problems, nor do they experience them to the same degree.

If you haven’t already done so become a member of our association and reach out to our community on Facebook and Instagram and or connect with any of the Committee on our website.  We will include you in invitations to social and other events, send you our regular newsletter and provide you with sources of information as you require from time to time. Attendance at our events also gives you the opportunity to chat with people who know exactly what you are going through.

Our family doctor or pediatrician has never had a patient with Williams Syndrome – what should we do?

Williams syndrome is quite rare. Many doctors and paediatricians will never encounter a child with WS in their practice. You will find specialists at children’s hospitals who have treated other patients with Williams Syndrome. Whether to stay with your care provider or not is a very personal decision, but don’t underestimate the value of having someone on your team who knows you and your family who is willing to learn with you on this journey.

Is Williams Syndrome “genetic”?

Williams Syndrome is most often caused by the spontaneous deletion of 26-28 genes on chromosome #7. Rarely, the deletion is either larger or smaller than 26-28 genes (and these patients have what is called an “atypical” Williams Syndrome deletion).

Williams Syndrome is not one that is usually passed down from parents.  A Williams Syndrome diagnosis is very often the first one in a family. However, a person with Williams Syndrome has a 50:50 chance of passing the disorder on to each of his or her children.

Is there a range of severity in Williams Syndrome?

There is a wide range of severity in Williams Syndrome, but no information exists to help predict where a person will land on that spectrum. Some children have a life-threatening heart condition. Some have no heart issues at all. Some have a low average IQ, while some have greater intellectual disability. Similarly, although most children with WS are overly friendly and very talkative, some are mostly non-verbal and quite reserved. Early intervention and ongoing medical supervision can help a child reach their full potential.

What is the life span of someone with Williams Syndrome?

No careful studies on life expectancy in Williams Syndrome have been done. Many adults live relatively healthy lives into their 60s and 70s. However, there are issues that may limit lifespan such as heart problems, high blood pressure, gastrointestinal problems, and various endocrine problems.

 

As is true for many individuals with developmental disabilities, people with Williams Syndrome are more vulnerable to common illnesses even if they are generally healthy, and are more likely to be injured in accidents. Therefore, the life expectancy of an individual with Williams Syndrome may be shorter than the general population by approximately 10-20 years.

Can someone with Williams Syndrome have children?

A person with Williams Syndrome is biologically capable of having children, but there is a 50:50 chance that any child born of a parent with Williams Syndrome will also have Williams Syndrome.

What kind of life will my child with Williams Syndrome have?

Many people with Williams Syndrome live a rich life. The majority of adults with WS master self-help skills and complete academic and/or vocational school, with new programs and education opportunities popping up every year. From fulfilling volunteer work to supervised employment to independent jobs, there are many ways adults with Williams Syndrome play an active role in society. Many live with their parents; others live in apartments with full time supervision or part time support and some are able to live on their own.

My Williams Syndrome child has feeding problems. What do I do?

You should speak to your doctor or paediatrician and ask for advice and/or a referral to a relevant specialist.

My Williams Syndrome child will not sleep. What can I do?

You should speak to your doctor or paediatrician and ask for advice and if necessary a referral to a relevant specialist. You may want to discuss medication to promote sleep if the medical professional thinks it appropriate.

Will my child go into mainstream or special needs education?

Educational needs vary from child to child and must be based on expert advice and where the child will be happiest, best settled and, therefore, able to learn. It is often the case that people with Williams Syndrome move between mainstream and specialist education throughout their time in education, depending on what is best suited to them at the time.

My Williams Syndrome child cannot cope with certain noises – why?

Hyperacusis or a heightened sensitivity to noise (pitch as well as volume) is very common in Williams Syndrome. It is not to be taken lightly; noises which others take for granted can be hugely distressing for people with Williams Syndrome; even laughter at a certain pitch can cause problems. You should discuss the matter with your doctor and if necessary ask for a referral to a sound therapy clinic or discuss the use of ear defenders.

Is there a recommended diet for people with Williams Syndrome?

There is no single recommended diet for people with Williams Syndrome. Infantile Hypercalcaemia, which can be a feature of childhood Williams Syndrome is treated with a low-calcium diet. You should speak to your doctor and ask for referrals to a dietician and/or nutritionist.

What about WS and musicality?

Many children with WS clearly go through each day with a song (or a dance) in their hearts. Music seems to be at their fingertips, and in spite of problems in almost every other area they can be totally consumed by music of every type, and have great concentration for all things musical.  When your child is very young concentrate on exposing them to music of all kinds.  Note that some children with WS can exhibit a range of musical abilities from those who just enjoy listening to music to others who will develop significant musical ability and interest as they develop.  When your child is old enough you can begin to experiment with music lessons and you should work with their teachers to find the right level of musical engagement as your child develops.

Need WSI to call you?

Williams Syndrome Support Groups

Williams Syndrome Belgium
Williams Beuren Syndrome Bundesverband
Asociacion Sindrome Williams Espana
autour des williams
National Council for Special Education