How can parents find their comfort level about school issues and permit themselves to be happy, caring, and positive for themselves and their children? There are lots of things to learn when parents are getting children back to school, even if they have done it many times, and it may be more difficult for parents of kids with bleeding disorders (BDs).
The medical care and treatment of BDs may be additional stressors for parents, so you need to share information about your child with school staff. First, parents should do their homework and become familiar with their child’s BD. A collaboration between your specialty pharmacy and your Hemophilia Treatment Center’s (HTC’s) team can help parents with advocacy by providing medical information about your child’s condition, treatment, and needs through in-person or zoom meetings. It’s easy to see how this shared information will decrease stress levels and increase the comfort levels of parents, kids, and school staff.
Resources for Parents
Some valuable resources for parents of kids with BDs are the School Toolkits available through the following organizations:
National Hemophilia Foundation
- Tools for Connecting with a School
- 7 Back-to-School Resources for Parents of Kids with Bleeding Disorders
Hemophilia Federation of America
Mental Health America
The internet provides many resources, but parents should be selective and choose resources from reliable websites.
Some of the best resources are good educational services that consider children’s medical needs. However, it’s important for parents to research IEPs (Individualized Education Plans) and 504 plans which can be complicated to understand and obtain. Parents don’t have to be experts in this area, but they should know the basics and where they can get answers and assistance. IEPs provide special education services for children with disabilities that impact learning or academic ability. A severe, complicated BD or comorbidity of another condition may be found to be a disability in some cases.
On the other hand, a 504 plan based on the Americans with Disabilities Act (ADA) has more to do with access to resources needed to assist children with their education. This includes access to accommodations, like elevators, tutors for absenteeism, etc., that enable kids BD to succeed in school. With advances in treatments and medications, BDs may not necessarily qualify as a disability, but many kids with BDs may need and do well with 504 plans.
Important Tips for Back to School
- Be positive in your outlook, attitude, and mood by building confidence in yourself and your family. It will rub off on your child, family, friends, and school staff.
- From a practical standpoint, get a calendar to keep organized. Don’t miss the important stuff. Don’t sweat the small stuff.
- Approach school experiences with an open mind. Don’t look to place blame anywhere. Build your team and look for answers.
- Knowledge is power. So, gather your resources, especially the School Kits for children with BDs, through organizations like NHF, HFA, and NEHA.
- Contact your specialty pharmacy, HTC, or pediatrician’s team to access mental health resources for yourself or your children, if needed.
- Check the school’s website for up-to-date information on school services such as IEPs and 504 plans.
- Be an advocate for your child. It will build positive relationships with school staff, and it teaches your child to become an advocate for him/herself.
- Talk with other parents with children with BDs. It helps to know that you are not alone in your journey. Also, talk with your friends and neighbors who have kids in the same school system. It is helpful to hear the stories and advice of others.
- Sharing is so helpful. Share your child’s information with school staff in the way you feel most comfortable – whether you prefer to email, call or meet with them. Start a conversation. Ask your specialty pharmacy or HTC to help you advocate, if necessary.
- Good communication is so important as you and your family work through the school system. It helps build good relationships, decreases stress, increases confidence and trust, and creates a positive outlook. After all, your child will be in school systems for many years to come.
By Peg Geary, MA, MBA, MPH, Director of Mylyfe Patient Services