If your child has a chronic illness, you know it's easy to feel alone in your school and community. Frequent hospitalizations and physical limitations tend to isolate your child. Support for you and your child is crucial to a sense of connection and well-being. Online support is also a valuable resource for families with chronically ill children. As you begin to connect with other families, you will feel a sense of empowerment and hope.
Online Tools and Support for Families
- The Care Notebook (a great free resource from The Institute for Child Health Policy)
As you prepare your child for starting school, begin to make contact with the people who can help you at the school. Start with the school secretary. Stop in to meet her, and ask for an appointment with the school principal. Introduce yourself, and explain your child's situation. School secretaries tend to be gatekeepers and very much "in the know" about what is happening. Keep meeting with school personnel - principal, assistant principal, counselor, nurse, teacher - until you find someone with whom you feel a connection. Be friendly and maintain a positive attitude that says, "I trust that you will assist me in providing the best possible school experience for my child".
Be prepared to share written information about your child's illness with school personnel. You will likely know more than they do about the abilities and limitations your child will have in school. Take the offensive in combatting any misperceptions and ignorance by being forearmed with knowledge and confidence. These resources offer helpful information on specific diseases, but the information on Section 504 and school accommodations is helpful regardless of the condition.
Advocacy and Resources for Your Child at School
- My Child Has a Chronic Health Condition. What Should I Tell the School American Academy of Pediatrics
- Band-Aides and Blackboards Parents Section with advice on inclusion at school
- Life with Diabetes in School Juvenile Diabetes Research Foundation
- Diabetes at School Excellent starting point from Children with Diabetes
- Living with Cystic Fibrosis at School Cystic Fibrosis Foundation
- Education and Children with Seizure Disorder Epilepsy Foundation
- [link=http://www.ccfa.org/kidsteens/?LMI=8]Back to School with Crohn's and IBD[/link] Crohn's and Colitis Foundation of America
- Schooled in Asthma American Academy of Pediatrics
- Managing Asthma in the School Environment U.S. Environmental Protection Agency
As more and more schools are becoming computer and Internet friendly, creative and interested teachers are taking it upon themselves to use the power of the computer in their work. A teacher who is comfortable using email, etc. will be a valuable resource for your child during frequent absences. Ask for a teacher who will be willing to stay in contact with your child with assignments and encouragement during hospitalizations and absences.
More Web Resources for Families of Children with Chronic Illnesses
- The Child with a Long-Term Illness AACAP Facts for Families
- Children with Chronic Conditions University of Michigan Health System
- How Parents Can Help Their Child Cope with a Chronic Illness Center for Effective Parenting
- Caring for a Seriously Ill Child KidsHealth.org
