Stopping Tantrums in their Tracks – The special challenges of temper for kids with bleeding disorders

It’s safe to say that every parent has had to deal with one of their child’s tantrums, sometime. The shrieking, the rolling on the floor, the out and out refusal to mind—they are enough to test the will of even the most calm, patient parent.

But for parents of kids with bleeding disorders, tantrums can be complicated. A toddler’s kicking and screaming can cause a bleed. Getting little children to accept painful treatments and understand their medical limitations is a challenge, too. Fortunately, parents that have participated in a Parents Empowering Parents (PEP) program do a lot to help each other keep their unique discipline challenges in perspective.

“It’s hard to stay calm when your kid might be putting himself in danger,” said Regina Aguirre, a mother of a son who is now 18 years old, with a Factor VIII hemophilia deficiency. Like many parents, they received his diagnosis when their son was born, and found PEP through her local hemophilia center. They were able to get into parenting training with PEP training when their son was still a toddler, right when they needed it most.

“Safety was our biggest concern. We padded our whole house as much as we could. And we found ourselves trying anything we could do to appease him, to keep him from getting upset. We felt guilty, too, that he had so many medical challenges he had to deal with, that we let him get away with a few things at first. But eventually, we learned how to keep him safe, and hold our ground on discipline. We had to find that balance,” Regina said.

PEP taught Regina and her husband to stay calm during tantrums, and look at them as objectively as possible. What was causing his tantrum? Was he over tired? Hungry? Over stimulated? If the answer was yes, they moved to address those problems. If they were out in public, she removed him to the car. If they were home, they had a safe, soft place where her son could be placed in a time out until he calmed down. And no matter what, she and her husband backed each other up, so her son wasn’t confused about where the authority lay in the family. They didn’t let guilt stand in the way of being a good parent.

“Kids with bleeding disorder are still kids, and they need you to be the parent,” Regina said.

Tantrums, unfortunately, aren’t limited just to preschoolers. As any parent of a teen will tell you, teenagers are capable of epic tirades. And for kids who have to juggle complex medical issues along with the trials of teendom, those tantrums can be especially fraught.

For Lupe Torres, her daughter’s teenage fits were particularly heartbreaking. Her daughter wasn’t diagnosed until she was in middle school and started menstruating. The diagnosis caused a cascade of problems with her peers at school, all while her daughter was struggling to cope with her Type 1 severe case of Factor 5 Leiden VonWillibrand Disease.

“It was really difficult,” Lupe said. “For a while there, my daughter refused to see her doctor, or talk to him when she was forced to see him. She refused to infuse. She didn’t want to miss school. She kept telling me that she had to be normal. And she was mad at me, blaming me for passing this condition on to her.”

While it took a while to work through all her daughter’s issues, they were able to quell the tantrums by getting her to take ownership of her illness. “I stepped out of the room, and encouraged her to create her own relationship and communication with her doctor. By getting out of the way somewhat, it allowed her to take charge. At this point, when she felt so helpless, it was empowering for her,” Lupe said.

Her younger son, who was also diagnosed with a less severe form, had his issues in his teen years as well. He refused to tell her when he was having a bleed, often letting the symptoms get worse so he could attend a school function, or do something he wanted to do with friends. He too, had to learn his limitations, and learn when to ask for help, she added.

Of course, working with other PEP parents also helped her to understand that her daughter would be okay, and get through her challenges. “Half the battle is letting your child know they are not alone. We were able to wrap support around her from the hemophilia community, and in the end, that made all the difference.”

 

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