Talking to Yourselves… an insiders look at handling Family Issues when a child

by Tracy Denell – As presented at the DMD Family Roundtable on May 3, 2008

1. They need a story to tell.
2. The story should be one they understand and in their words. They need to be comfortable with telling their story and not get upset when telling it.
3. The story needs to be in language others will understand.
4. They need to tell others how they are different and how they are the same.
5. If they are comfortable with siblings, others will be more open and accepting of how they are different. Sometimes they like the attention, sometimes they are jealous. Let them be separate from the diagnosis if they need to be. It can’t be their world or they will resent it and you and they afflicted sibling.
6. Do not keep the diagnosis a secret…I have seen this be emotionally tragic in later years. They are smarter than you think. You can’t keep things from siblings for long and need to be in the loop. They worry too.
7. Treat your children’s relationship as normal as possible. Let them fight and love. Don’t interfere too much…they need to work out their own relationship. Don’t take sides if you can help it. They will be more resilient and emotionally healthy for that. Don’t force the relationship and don’t force the sympathy it will only make them more resentful. They will surprise you!! Ex. I wish I was in a wheelchair…attacking the doctor. Getting on the boat, fear.
8. They need their own story. The world should not always revolve around the DMD child. Find the specialness in each. Work on your guilt!! Treat them like normal.