Shonda Joshua gave herself a goal when she learned her son, Michael, had severe hemophilia B.
"I had to help this young man live a very close to normal life," she says.
That meant going to school just like other kids, but it wasn't easy handing over his care and safety to teachers and the school nurse. At age 4, Michael was diagnosed with hemophilia. So Joshua understands what it's like to be that nervous parent.
"The one place they have to go that you cannot go is school. You can look in the window, but you have to leave," she says.
Here are her five tips for keeping your child safe and building a positive relationship with school officials:
1. Be honest
Some parents don't inform teachers and school nurse that their child has a bleeding disorder. This is a mistake, Joshua says, though she understands their strong wish for the child to not feel different from other students. But failing to tell the school can lead to unintended consequences, such as suspicions your child may be being abused due to frequent bruises, Joshua says.
It's far better for the child's safety and health that school officials know about your child's illness. Then, they'll know what to do and who to call if your child gets hurt or develops a bleed at school. Also have your child wear a medical ID bracelet because not every school official will know your child personally – substitute teachers, for instance.
2. Be polite and professional.
It's understandable that parents are protective of their children. Some may want the school staff to uphold their own very high safety standards. Other parents may want the school to allow the child to fully participate in everything, including physical activity that carries a risk of injury.
But taking a bossy approach with school officials doesn't work. Respect their time and expertise, she advises.
"We don't want them to be sorry we walked in the door," Joshua says.
3. Bring in experts.
Though parents often know quite a lot about their child's bleeding disorder, it's better to bring in a health care provider who has expertise in hemophilia to talk with teachers and the school nurse. The school nurse, though medically trained, may know little about hemophilia.
"Don't minimize her experience. Offer to provide an expert to help the nurse learn more about the bleeding disorder your child has," Joshua says.
An in-service session with a bleeding disorder expert can go a long way. Rightly or wrongly, what an impartial expert says will have more authority than "just a parent." Request the school’s permission to set up the session. It can be a good opportunity to ask about accommodation plans and procedures that the school already has in place for students with medical needs.
"Attend the in-service as a mom," Joshua says.
Also involve your health care provider in the discussion about gym class, so everyone feels comfortable and your child isn't needlessly left out of physical activity, she says. The National Hemophilia Association provides guidance on sports and physical activities for children who have bleeding disorders.
4. Create an emergency plan and, if needed, a 504 plan.
Simple things like keeping emergency contact numbers up to date can make a big difference if your child gets injured or has a bleed at school, Joshua says. Make sure your emergency plan includes current information about the medications your child takes.
A 504 plan is a customized education plan that specifies how a publicly funded school will make accommodations for a child with special needs. Federal regulations govern the plans, which can be helpful in specifying and ensuring your child gets what's needed to be successful.
5. Know when to go over someone's head.
A respectful, collaborative working relationship is best for everyone involved, but what if you've tried your best and your child still isn't getting what he or she needs at school? Your child's health, safety, and well-being, including freedom from being isolated unnecessarily, are a parent's top priorities, Joshua said. Sometimes, you have to escalate the situation.
Start by giving the school official a reasonable time to respond, meet with you, or address your concerns. If that doesn't work, it's time to move up the chain to the principal or superintendent of schools.
"Keep in mind that everyone has a boss," Joshua says.
It can help to talk with other parents whose children have hemophilia, or other chronic conditions. They likely have felt the same frustrations and navigated the same issues.
"We have the bleeding disorder. The bleeding disorder doesn't have us," Joshua says.
"We're all in this thing together."
