Teach them to become advocates
Parents who raise special needs children learn pretty quickly the importance of becoming advocates. It means that sometimes, they have to become “that parent,” the one who asks too many questions, demands answers and fights to ensure that their child and their condition are not forgotten about.
It can be exhausting and at times discouraging; however, it’s a critical part of ensuring that their child’s needs are met. A child with DMD will have changing needs and it may feel that they are changing on a daily basis. Try to involve them in the tough conversations - especially the ones that revolve around ensuring that they get what they needs. For example, have them there when having that school year conversation mentioned above.
By demonstrating the power of advocacy and how it may benefit them by making them feel empowered to ask for the things that they needs, a parent is setting the stage to teach about the benefits of self-advocacy.