Web Resources For Children, Teens & Parents

Included on this page are various links to information aimed at children and teenagers with a parent affected by Multiple Sclerosis. As well as information for a parent who needs to explain their Multiple Sclerosis to a child or teenager.

If you are a parent of a child/teen WITH Multiple Sclerosis, or a child/teen with this condition we have a page especially for you:   Resources for Children/Teens with MS

Keep S’myelin is a colourful, engaging, informative, and reassuring newsletter to help children and their parents talk and learn about MS together.

Each issue is filled with stories, interviews, games, and activities that highlight a specific topic related to MS, as well as a special section just for parents.

You may also find this magazine useful if your child has MS.

Issues are available online in interactive versions (Flash) or print versions (.pdf). 

Teens And MS Discussion Forum on the MS World Forums site.

"For teens (ages 13 to 17) who have MS, or who have a parent or guardian with MS. We encourage you to invite your parents to participate here, too."

A booklet for young people on facts and feelings on Multiple Sclerosis.

This 28 page booklet is colourful, easy to use and read, and has a lot of easy to understand text etc. for young people who wish to know more about the condition their Mum or Dad has.

It can be downloaded for the Australian MS Society site :

Has Your Mum Or Dad Got MS?

Benjamin, the book's hero, is an eight-year-old boy whose mother has MS. He is worried and frightened when his mother suddenly has trouble walking and dressing herself because of her MS. With the support of family and friends, Benjamin learns that it is okay to be worried, ask questions and talk about how he is feeling.

Benjamin: My Mum is Special was originally published in Germany and has been successfully launched in Austria, France, Portugal, Ireland, Hungary, Malta, New Zealand and Australia. The foreword of the Canadian edition of the book was written by Dr. Brenda Banwell, director of the Paediatric Multiple Sclerosis Clinic at The Hospital for Sick Children in Toronto.

"Benjamin provides a view of MS through the eyes of a child struggling to understand his mother's mysterious and sometimes frightening illness," says Dr. Banwell. "It is a beautiful story of coping, compassion and caring that should be shared between all parents with MS and their children."

"This book offers a platform for parents to talk to their children about MS and gives children the opportunity to share their thoughts and ask their questions," says Jon Temme, national vice president of client services for the MS Society. "MS is a disease that can be frightening for children and we are pleased to help families ease that fear and better understand MS."

MS is a serious, unpredictable and often debilitating disease that affects the central nervous system. Symptoms of MS may include: vision disturbances, extreme fatigue, loss of balance, pain, muscle stiffness, speech problems, short-term memory problems and even partial or complete paralysis. MS is often diagnosed when people are most active in their work and family life, between the ages of 15 and 40. Women are more than twice as likely to develop MS compared to men. The inconsistent nature of the disease can be a heavy burden for some families and the nature of the disease can be particularly frightening for children.

"Funding the publication of this book was a wonderful opportunity for Berlex Canada Inc. to support the MS Society and people living with MS, their families and caregivers," says Janine Pajot, of Berlex Canada Inc. "Benjamin: My Mum is Special is a unique project that we are extremely proud of here in Canada and around the world."

To obtain a copy of Benjamin: My Mum is Special or for additional information about MS, please call MS Pathways at 1-800-977-2770, visit www.mspathways.ca, or contact your local office of the MS Society at 1-800-268-7582 or www.mssociety.ca

Source: Berlex Canada Inc

The site for young carers, their families and those who work to support them across the UK.

The YCI are part of The Children's Society.

They offer information and training to anyone who  works with  young carers and their families across England and the UK. We also offer information to Young Carers and their families.

Another good resource for information, advice, support, and contact for parents who have a disability.

The National Centre is home to Disability, Pregnancy and Parenthood International (DPPI) and Disabled Parents Network (DPN), two organisations controlled by disabled parents.

Both DPPI and DPN believe that disabled parents have the right to have children and to be properly supported in carrying out the important job of being a parent.

An Example of a question asked by a disabled parent who contacted the National Centre:

I have MS. Although Social Services have assessed my needs, I've just been told they can't provide me with any support. My 4 year old daughter is starting school soon. Can you give me some information on the rights of access into state schools?

From the National Centre disabled parents have easy access to all that DPPI and DPN have to offer. If the National Centre is unable to help, disabled parents will help find someone who can.

The National Centre for Disabled Parents
Unit F9, 89-93 Fonthill Road,
LONDON, N4 3JH.
Freephone for further information: 0800 018 4730
Text: 0800 018 9949 Admin: 020 7263 3088
Fax: 020 7263 6399
Email: info@dppi.org.uk

The Disabled Parents Network (DPN) is a national organisation of and for disabled people who are parents or who hope to become parents, and their families, friends and supporters.

We are here for all parents, including parents with physical or sensory impairments, people with learning difficulties or long-term illnesses, people with mental health issues and deaf parents.

We believe that disabled people have the right to have children and that they should be properly supported to carry out that right at each stage of parenting."

Their aim is to :

• Provide peer support, information and advice to disabled parents.
• Remove the physical and social barriers limiting or denying disabled parents ability to take part in society on an equal basis with non disabled parents.
• Provide or assist in the training of disabled parents, volunteers and others working with them and the advancement of education of the general public.

A very good resource for all disabled parents.

Are you a parent with MS? Are you unsure as to how to explain the illness you your small children? If so the MS Trust may be able to help you.

They have published two short illustrated story books: "My Mum's got MS" by Penny Sawyer and Carolyn Young and "My Dad's got MS" by Gary Hetherington and Carolyn Young.

These short stories will explain to your children all about Multiple Sclerosis but in the right way without causing any great anxiety.

"When Lorna found that services and for women and parents with MS seemed lacking, she formed her own non-profit organization, MS MOMS. The MS MOMS web site is a place for women and parents like herself, to vent, cry, love and laugh when this sometimes invisible disease leaves them feeling that they have no-one else to share with."

This site has not only a chat room but many pages of good advice to Mums (and Dads) for helping deal with MS.

Multiple sclerosis aff ects not only the person with the
illness, but also family members and friends. Plaintalk
explores some of the challenges families face and describes
ways in which some families have handled them.

Most chapters of the National Multiple Sclerosis Society
off er support groups where family members share their
concerns and fi nd encouragement. We designed this
pamphlet to resemble a meeting of one of these groups.

You will hear husbands and wives; and children and
parents of people with MS speaking frankly about the
stresses and strains—and opportunities—of living with
someone who has MS.

This booklet is produced by the US National Multiple Sclerosis Society.

This online book is aimed at families with pre-teen children, where a parent has Multiple Sclerosis

It is produced by the US National Multiple Sclerosis Society