Wednesday, March 27, 2013

Educate and Advocate

My partner and I started a organization. called Hope's Seed. Hope's Seed was founded in February 2013, to meet the needs of parents of special needs kids by focusing on local, face to face support and care.

Hope's Seed plants a seed of hope in parents by telling them "You're not alone!"  We all know what it is like to experience difficulty on the journey of raising our children with special needs, and so we created this organization to support and encourage each other, and to offer hope.

Each month Emily and I come up with a topic to talk about this month (March) we are talking about advocacy. Here was one of my post.

Please like us on Facebook and help show other parents of special needs that they are not alone.

Sometimes, advocating for your child can be difficult.  Standing up to a doctor and telling him or her how to care for your treasure can feel intimidating.

Many times I still feel intimidated when I speak my mind. Lots of things go through my head, like maybe I am wrong- after all they are the doctors they should know what they’re doing. I have come to the understanding that many times doctors have no idea how to handle our children and so they are just winging it.

In the last post we talked about how gut instinct mixed with knowledge is your biggest weapon. One of our parents who has a child on a ventilator felt that he was on the wrong ventilator.  Her gut was telling her so; however, she read up and asked other parents with children with the same diagnosis as her child. She took a deep breath and went and told the doctors she wanted her child on another ventilator. You know what?  She was right!! Her child improved quickly and drastically.

Standing up to the white coats (aka doctors) is hard, especially if you are questioning yourself.  However, remember that the doctors are working for you (you are giving them a paycheck every time they walk into your room), and there is a reason they say they are practicing medicine and they do not say they have mastered medicine.

Think of it like this: your child is your business and you are the CEO of the business, and the doctors are paid contractors. They cannot do anything to your child without your consent.  In fact, you can choose to move your child to another hospital if you do not feel that your child is being properly cared for.
Here are some key points:
Your Doctor does not know everything.
You are the leader of the team that is taking care of you child.
What you say carries more weight than what the doctors say.
Gut instinct and knowledge are the keys to caring for your child successfully.
Take a deep breath.  Know that you are right; tell the doctors what you want and do not back down

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