• Have an OI Child
• Locating a Doctor
• Taking Care
• Recognizing Fractures
• Independence
• Mobility Aids
• Schooling
• Parents with OI

Parents generally strive throughout their children’s’ formative years to teach them principles and skills that will enable them to lead self-sufficient, productive lives as independent of parental influence as possible. For the parent of a child with Osteogenesis Imperfecta, encouraging independence can be a challenge. While parents realize the value of teaching their child to be independent, they also tend to protect their child with OI by pulling him or her closer to them.

Finding the right balance is the key. Many children with OI who experience much pain in their early years become frightened of sudden movements, of being touched (especially by strangers), or of unfamiliar situations. If a parent can provide as many positive experiences in these situations as possible, the fear can be overridden with confidence.

Teach your child that others can be trusted to lift or touch him or her. We cannot stress enough the importance of allowing others to care for your child while you leave for limited periods of time. Not only does this provide some much needed time on your own for you as parents, but it teaches your child that he or she can function independently without you. You need to teach your child independence, and you, in turn, need to let go. When instructing your babysitter in the care of your child, remember to repeatedly reassure the sitter.

Be sure to mention that fractures can happen no matter how careful one is, and that you would not place blame, just as you cannot blame yourself. Always leave a telephone number where you can be reached, and thoroughly explain handling and emergency procedures. Some parents purchase a cell phone or pager so they feel assured that they can be easily reached at any time.