Leadership-my amazing opportunity
 

As I posted last week I have been attending a Parent Leadership training. I had the dilemma of making a goal. It could have been something simple and personal or something big a public. I was really torn between sitting in my comfort zone and making it something like becoming a stronger advocate for Riley's needs but I have been drawn in a different direction (not that becoming a stronger advocate isn't a need) I have felt for a very long time that after everything I went though to get Riley where she is today it would be a terrible injustice to just push those events into a closet and pretend it never happened. Something good has to come of it. People who matter (professionals) need to hear our story and learn from it. There are/were so many different things that went the wrong way.

The focus now is on "Family Centered Services" What happened to us is an example of how FCS could have prevented a great portion of it.

I could go on and on about that part, but the end result was that during the meeting I was connected to two people who happened to be "the right people" to make this happen. After I spend sometime getting my thoughts together and putting it all on paper I have two commitments, one a web page that parents who contact the Family Support Network and have been touched in someway by the Munchausen by proxy horror can read what we went though and hopefully not be so afraid to seek support from local support groups and programs (I was terrified until the last couple of months) the second is to speak to groups of social workers, nurses, and physicians who are interested. One of the contacts I met suggested I go to grand rounds with her in the spring.

I am so excited about the vast opportunities that are awaiting.

A friend of mine who has a child with a definite diagnosis is taking her child to the Tubers sclerosis clinic at Cincinnati Children's requested his medical records and has been reading through them. She found that they suspected her about 2 years ago when her son was having some odd seizure activity. She was horrified.

Nothing ever came of the mention but she wonders now if that is why some of the specialist at that hospital haven't taken all of her very valid concerns seriously.

I should not be amazed but I am, I really wonder how many kids with special needs have those words in their medical records at somepoint or another. Which can be very dangerous, once those words are thrown out there for any treating physcian to see it casts a shadow of doubt and can cloud treatment decisions and create serious problems for the child.

This is really important to me

I am so excited for you! I think I have heard the saying "everything happens for a reason" about a zillion times now since Langan's SN journey began. But stories like yours make me wonder if it is actually true. Your experience, as horrible and unthinkable as it was, just might be the thing to save so many other families from walking down that path. You go, girl! I can't wait to hear how it goes.

(((hugs)))

I must say, I would NEVER have come up with such a wonderful goal as that. (And I hear that "comfort zone" comment.) Mr. Kay and I were discussing what I want to be when I grow up.:p Wondering if there is a way to make money with all of my new found knowledge. I told him, in some ways becoming a neurologist appeals to me. The part about 4 years med school, then residency, extra for pediatrics, etc.... that part is unappealing. So... other than doing all I can to help Tom go as far as he can, I have no goals.

How wonderful....Don't have time to post in length will come back later and post more.....You go Girl