Teaching Dr. Self

Parents of kids with O.I. are often referring to "the scream." This is the noise that sends our parents scurrying to our side and then whipping out the bag of old splints and bandages that appears out of thin air. It is not the same cry you hear when a toddler is getting a booster shot, and it isn't the same heartbreaking wail when a child's hopes are crushed at the toy store. It is part shriek, part cry, part scream, and all of it is directed at a sliver of wispy gray-white that no one can see until hours later on the x-ray. And even then it is sometimes invisible.
There comes a time when the scream doesn't serve so much as an "alarm" for our caretakers because we realize for ourselves what has happened -- we begin to recognize that the pain is coming from a broken bone, just another fracture. And instead of "the scream" we are then able to say "I just broke a bone.."
So when is that moment? How can caretakers or parents help kids develop that recognition? How do kids with O.I. become better aware and more knowledgeable of where a fracture is? How do we know how 'badly' it is broken? Or even how many places the bone is broken in?
There are a few tips that can help make the experience a little less frightening and a little less uncertain ---

Structuring the Suddenness: 
Warning: Just because you are raising a "Dr. Self" doesn't mean medical opinions should be ignored! 

  • It is always most important to listen to the child! Or become acutely aware of where their hands are gripping, or which limb has become oddly limp and unused. Just because you may have heard a crack coming from there, doesn't mean that may be where the bone is broken!
  • Let the child hold the broken bone as much as possible - particularly during the transition before going to the doctor's. I know that from my own experience it is difficult for parents to not want to rush in and 'fix' everything themselves; however, knowing how the broken bone feels to us, where it is, how tightly to hold, what position to rest the broken arm in are all small details that begin to build our awareness of our bodies. The body is learning even when things may be breaking down.
  • Know which questions to ask. At the time of a fracture, especially for an O.I. fracture, "how did this happen?" Might be one of the first two questions that are on the tip of your tongue. But think about it!! The child has O.I.!! And most of the time, especially for young children, we aren't always aware of how the bone suddenly broke. From my experience, I used to become extremely frustrated with school nurses who would ask me "how did this happen? What happened?" before they would assess where the injury was. It doesn't help the O.I. child when you are trying to figure out the "how and why's" while they are in pain; in my experience in fact, it only made me feel worse. Instead figure out "where does it hurt?" "What hurts?" "How much does it hurt?" "Can you wiggle your fingers?" "Does your leg feel numb?" Thinking about fracture prevention is important, but not until after you have taken care of the incident at hand first!
  • Let the child be a part of the 'grown-up' discussion. This might be difficult because the fine line between protecting and shielding are so often blurred. However seeing the x-ray, listening to the doctor talk with my parents about healing time, and becoming 'naturalized' to the language and vocabulary all became useful tools to becoming self-aware of my body. Of course no parent wants their child to hear the doctor say "healing might take about 5 months.." but the reality of it is that we begin to connect the pain to healing-time that is required. It is a difficult connection to describe in words, but understanding that my arms heal faster than my legs or that my ribs take about 2-3 weeks to heal have helped me become better equipped at assessing my own physical abilities.
  • Routine. No one likes the idea of breaking bones becoming a routine. But because of the frequency of these incidents the truth is that there is some kind of routine to each of our own fracture management procedures. Whether the child fell off a trampoline, broke a clavicle, or sustained a bruise to the bone -- try to keep some semblance of order in the chaos. I know, I know many of you are thinking Sandy, you just wait until YOU have a kid with O.I and THEN you try doing this..but growing up I have appreciated the order in which my parents dealt with broken bones. It helps to know that small instances in life that can quickly be turned upside down are not reasons to feel despair. It helps to know that just because you broke a bone doing something your brother does all the time doesn't mean you were wrong to do it. And it helps to watch that no matter how badly things feel anything can be righted once again!  

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6 Responses to Teaching Dr. Self

  1. Fantastic, I saw this on a link on facebook, I have type i OI as do both my adult children. So so right. I will be adding your blog to my favourites. Thank you. Im now off to read the rest :D

    1. Thank you so much for the comment & for joining on =) I appreciate it and really enjoy the reader feedback I have been getting!

  2. Love this one! My 15mo old has type 3 and im going to bookmark this entry for her dad to read later! Its a good one Sandy!

  3. I'm a 'non OIer' parent of an 'OIer'. I don't for one moment think that you need to be a parent to know what you are talking about. If you chose to be a parent, the treatments available now are amazing and the massive amount of support you will have at your fingertips will be something your parents could only have dreamt of. Your child's life will be quite different to yours BUT, no one will understand your child as you will. You will know often exactly how they feel. You will know what to say and what not to. You will know how to help them along the path to psychological well being and arm them with coping skills that will serve them well for the rest of their lives. A whole host of skills that will be innate in you that we 'non OI' parents have had to learn as quickly as we can, a crash course with years of follow up study, sharing information and reading first hand accounts from people just like you! You might have an insight to why your parents did some of the things they did, you might even find yourself struggling not to do the same things they did - even though you hated it. But not having children never invalidates your opinion or experiences. I always love to hear what you have to say and am glad I have finally figured out how to comment!
    Sara M

    1. I'm so glad that you figured out how to comment too Sara! =) As always, I appreciate your feedback and I'm glad to hear this particularly coming from a 'non OI'er.' Thanks for the validation of sorts!


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