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Parenting a child with OI is both challenging and rewarding, parenting tips can be a blessing or a curse. A parent will need to find their own ground to stand on with their own child. Every child is different and will have their own individual needs and attention. It is impossible to compare children with this disease to each other, even two children with the same type because they can be affected so differently. The reactions of parents to the birth of a brittle bones child depend on their previous experience with the disease and many by related to the degree of visible deformity. Initial shock is usually followed by feelings of guilt, anger, confusion, fear of the unknown, fear of others’ perceptions, and concern about the physician’s competence and knowledge about this disorder. Parents of children with fractured bones have to face the usual concerns about having to care for a new baby as well as the physical, medical, and financial concerns related to the disability, so it is important to know parenting tips in all areas, not just medical, but financial and emotional concerns also.
An often overlooked parenting tip is that it may take some time for parents and extended family members to see the child as a person with a disability instead of merely a disabled child. It is very important for parents to be sensitive to the emotional needs of unaffected siblings. As parents learn routines that help their children survive and thrive, their confidence begins to build and they experience a sense of healing and bonding with their child. Caring for an OI child takes an enormous amount of patience and courage. A very necessary parenting tip is that these parents must learn to live in an atmosphere of unending crisis management.
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On top of the difficulties encountered while caring for a fragile child, the parents may also face the prospect of being investigated for child abuse due to many unexplainable fractures experienced by their children, which is why it is important to have parenting tips so that you are not pulled into a custody battle for your own child due to child abuse symptoms which run parallel to having the brittle bone disease. This is most likely to occur while the child is young, especially if the child was diagnosed at birth. Because Osteogenesis Imperfecta is not a very common disease, most doctors know little or nothing about it. So when these doctors see that a child comes in with multiple fractures for what seems like no apparent reason, the doctors become suspicious and have a duty to report their suspicions to child protective services. Social Services is then required to come and question the parent.
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Even though the parents may be innocent of any criminal action, they have very little proof that they have done nothing wrong. This is one reason why it is extremely important to keep a copy of the child’s medical history and a letter from the child’s primary physician handy at all times. Once the parents are proven innocent, they get to take their child home, but for some parents who don’t know their child has this disease, things can be disastrous. The parent can loose everything, even though they did nothing wrong, so it is important to have as much information and parenting tips as you can find to avoid this situation.
One of the most important parenting tips is to not be afraid to touch or hold the child. However, the parent must be very careful when doing so. Never pull on the child’s arms or legs or bend the limbs into an awkward position. The best way to hold a young breakable child is to grab them gently around the middle. With some types of OI it is best to put one hand under their buttocks and the other hand gently in the middle of their back. However, with an OI baby, put one hand between their legs on their buttocks and the other supporting the head and neck. Even if the child may attain injury when being handled, the caretaker should not feel badly. Injuries are a common part of the disease. There is a slim chance that the parent did something wrong. Always follow the doctor’s directions and parenting tips or seek parenting tips and advice of a therapist who is experienced in working with individuals with brittle bones.
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Parents of children who have this genetic disorder should avoid smoking because the child might have asthma or other repertory problems due to complications resulting from the restriction of their lungs being in a smaller than normal sized ribcage. When the child goes to school, they should not be sent to a special school. A very important parenting tip is to understand that there is nothing wrong with the brain, (unless they have broken their skull and there was some brain damage), just the bones. This is a physically limiting disability, not a mentally limiting disability.
An important parenting tip considers is when the child is at school; have them explain to other peers what the disease is.
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Awareness is very important for acceptance. Try to have a meeting with the teachers to explain what to do if the child experiences a break. Keep a letter from your doctor and a medical history handy at all times. Above all, trust your child. A crucial parenting tip is to let your child speak for his or herself, they will know when they need to go to the hospital. They know what is best for them.
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All children with OI need a primary physician who knows and understands their particular form of the disease and can build a strong bond of trust with them, which means parenting tips aren't the only important factor, but physician tips and relationships are beneficial as well. The doctor needs the skill to talk to the patient as though they are an adult so that the patient can know what to expect and how to cope. For the child, there is seldom much coping that they have to do. Young people with this disorder might want to think about getting a specialist that can explain everything that is happening with their bodies. The type of physician that will more than likely be dealing with the child is an orthopedic surgeon, a geneticist, or an endocrinologist who will offer everything from parenting tips to surgery options and treatment options.
Beyond parenting tips, the physician monitors the OI individual’s “recommended therapeutic intervention.” This means monitoring all aspects of the patient’s health, medication and surgical requirements. The physician managing the therapeutic intervention of a fragile child must form a cooperative and collaborative partnership with the parents, because the parents of the child with a disability can become rapidly more knowledgeable than many specialists regarding their child’s disease and the doctor needs to give the parents credit for their knowledge of their child’s condition and how best to care for them. The more parenting tips and recommendations a parent has, the more success is available to the child.
If there is a previous history of OI in either the mother’s or the father’s family, you probably have some idea what to expect and how to manage the disease. You should be aware, however, that a child’s symptoms and severity may differ from those of the parent with OI; that is, the child may not necessarily be affected in the same way that the father or mother was. When you are not expecting your child to be born with a disability, it can be a terrible shock and may be very upsetting. Having a child with a disability such as OI can be very trying, and may not be something that you thought could ever happen. Don’t be ashamed to cry or express your disappointment to friends and loved ones. As with any grieving process, you will most likely find yourself repeatedly going through stages, such as refusal to believe there is a problem, anger or looking for someone to blame, depression, and finally, acceptance.
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