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Muscular dystrophy is a condition which affects the muscles and is characterized by muscle weakness. Duchennes muscular dystrophy is one type of muscular dystrophy in children. This article describes the various stages of this condition and what we can do as teachers and parents.
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Early Phase (Diagnosis to 7 Yrs)
This stage is characterized by delayed milestones, weakness, and inability to participate in sports equally with other children. A child with Duchennes muscular dystrophy may get tired easily. They may also find it difficult to climb, jump and run.
As a parent or a teacher, you need to support and motivate the child at this age. The child is at his maximum functional level at this stage. Help the child experience different sports, places etc. when he still can. Even if he is not able to play as well as other children, help him enjoy participating. This is also a time when you can teach him swimming and other water sports. Take the child to different places and on lots of holidays. In all this, make each day special, and celebrate it. Take loads of pictures and keep them safely. This is a very special part of your child’s life and these memories will always be special to him.
Right from the beginning, expose the child to literacy and reading. These are hobbies that can continue throughout life. In addition, introduce other interests and hobbies like art, collections, simple construction etc.
In the classroom, look out for teasing among the children. Help the other children in the class understand that this child is special and they need to accept him as he is. Help the child see what he is good at. Help him to be independent as much as possible.
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Transitional Stage (6 Yrs to 9 Yrs)
This is a time of transition for the child and the whole family. The child may start requiring mobility aids or a wheelchair. It is a time for the family to look at adaptations or modifications required in the home. It is also a time when the teachers need to assess the need for any modified seating or positioning in the classroom. You can also get additional help from a professional who specializes in muscular dystrophy in children. Continue to help the child be independent, especially in self care activities.
This can be the most difficult stage in the child’s life, emotionally. Support the child and encourage him as he goes through the process of accepting his disability. Help him express himself through speaking, as well as other means like writing or art. Help him to meet and talk to other kids with muscular dystrophy. As he will not be able to participate as much in sports and other physical activities, arrange and plan other leisure activities that he can do with friends or people he loves.
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Loss of Ambulation (10 Yrs to 14 Yrs)
In this stage the person will not be able to stand or walk using his legs and will find it difficult to use his arms. The function of fingers may still be present.
Help the child further develop his interests by reading, writing or use of a computer. Continue to help him with social contact and help him maintain relationships. At this stage seating and positioning is a major issue. Discuss with your physiotherapist or occupational therapist to ensure that his seating position is good, and will not lead to further contractures.
The child may need an electronic wheelchair for independent mobility.
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Adult Stage ( 15 + Yrs)
In this stage, most people with Duchennes muscular dystrophy become very dependent for all their needs. They also frequently fall sick with respiratory infections. Pressure sores can also be a problem, if seating and positioning is not good. Help the person look at options of working from home, or through the Internet. Working outside home is a little more challenging, but it will help the person meet others and interact with them. Support groups will also help them stay motivated and find meaning in life.
As a parent, understand that although your child needs you to do everything for him, in his heart he is still an adult. Make sure you respect him and treat him that way. Allow him to make decisions for his life and help him to be independent as much as possible.
Build a good relationship with a local doctor to manage emergencies and complications. This will save a lot of time and stress when your child gets sick.
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People with muscular dystrophy think and feel just like us. The only difference is that they cannot control their bodies the way we do. Remember this as you work with a person with muscular dystrophy.
Teachers may come across muscular dystrophy in children in the classroom. Understand the child’s needs and respond to them. Your support and encouragement in the early years of life will help them become a stronger person, and make them more capable of handling the challenges that will come ahead.