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CAC Corner: Making Connections

Mat Bone


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Girl With Connected Word On Map Showing Global Networks
By Mat Bone

One of the most difficult things for people who are differently abled or the families they belong to is how to make connections with people and services that have the knowledge and ability to help through the difficulties they are experiencing. As a parent who has just found out that a child has a genetic condition or mental development issue or … you do not know where to go, who to talk to, or how you will deal with the situation.

It is a very difficult time in your life. Everyone wants to give you advice. Some of the advice is good, but much of it is not. Having said that, I hope to give some advice that will be helpful, and hope you will forgive me if it is not.

  1. Spend time with the person who made the diagnosis and ask questions until you understand what they are saying.
  2. If needed, get a second opinion.
  3. Find a support organization of people with similar conditions.
  4. Build your own support group who can help give you a break if needed.
  5. Remember you are a person and you need support too.
  6. Remember that the condition is not the child.
  7. Remember the child is a child first and that the condition will not make the child any less important to you.
  8. Remember your spouse and other children still need your time attention and love.
  9. The CPD has resources that can help you.
  10. Reach out to others who may need a helping hand or kind words
  11. You are loved and people want to help but do not know how. Guide them.

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