It’s very rare, but it does happen: MS has been diagnosed in children as young as two. These families struggle with isolation as well as with all the uncertainties of multiple sclerosis, but the National MS Society is one thing they can count on.
Here are some programs youth in Northern California can take advantage of:
Self-Help Group for Youth with MS
Most people with MS are diagnosed between the ages of 20 and 50, but sometimes MS does strike children and teens. They and their parents may feel isolated and uninformed due to the rarity of early onset. Our Support Network for Youth with MS provides the opportunity for you to meet others in a similar situation.
The Support Network serves two distinct groups:
- Children and teens with MS (21 or younger) residing in the home of their parents or guardians
- Parents of children or teens with MS
- The network also offers information and referral for parents and short-term telephone counseling.
To learn more, contact us at 1-800-344-4867, (415) 230-6678, or info@msconnection.org.
Telephone Support
The National MS Society offers three kinds of telephone support to the parents and relatives of youth with MS:
- Parent Support Group: Monthly support groups for parents or relatives of youth with MS are held by telephone for those interested in sharing feelings and discussing different aspects of the disease. Linda Samuel, MSW, LCSW facilitates these hour-long support calls. Each call costs approximately $6 to $10; financial assistance is available to those in need.
- Parent Teleconferences: Every other month, relatives of youth with MS can dial in to a discussion with a noted MS professional. During our teleconference, an expert speaks for approximately 20 minutes about issues concerning youth with MS, and then answers questions from participants for the remainder of the hour-long call. Topics typically relate to research, treatment, cognitive issues, and children’s rights at school. The call costs approximately $6 to $10; financial assistance is available to those in need. For the date of upcoming calls, consult our calendar.
- Short-Term Counseling: We also offer free, short-term telephone counseling for youth with MS and their family members. These sessions are offered by a licensed social worker.
For more information on any of these calls, please contact us at 1-866-KIDS W MS (866-543-7967) or childhoodms@nmss.org.
School Accommodations for Youth with MS
All kids deserve a fair chance to learn. That’s the idea behind IDEA, the Individuals with Disabilities Education Act. If you have a child or teen with MS, the National MS Society can help you ensure that your child gets appropriate treatment from your school system.
Kids, including kids with disabilities, have the right to go to school with their neighbors, sit together in the classroom, join school clubs, attend assemblies, go on field trips, and enjoy school plays. A federal law, IDEA provides educational funds to states that provide standardized access to education for all children with disabilities.
Under IDEA, individuals with disabilities are children who have impairments and who, because of their impairments, need special education and related services. IDEA applies only to certain impairments related directly to educational performance; however, Section 504/ADA covers any child whose disability constitutes an impairment of a major life function and who needs special education or related services. Every child must have an equal opportunity to access the benefits offered by our educational system.
What does all this mean? It means that children and teens with multiple sclerosis have the right to free and appropriate public education. This education must be “designed to meet individual educational needs of disabled persons as adequately as the needs of non-disabled are met.”
For information or assistance,contact us at 1-866-KIDS W MS (866-543-7967) or childhoodms@nmss.org.
Note: These programs are not appropriate for children, teens, or parents of adults with MS. They are intended for families in which the people with MS are under 20 years of age.