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-   -   On the road to answers. Tips? (http://www.diaperswappers.com/forum/showthread.php?t=1463315)

Jen's_4 11-13-2012 02:21 PM

On the road to answers. Tips?
 
We have been referred to the Thompson Center (aka the autism clinic) in Columbia MO for my youngest DD. I'm thankful that we are on the road to getting some answers, but I wondered what kind of tips you BTDT mamas had? Things that I should be doing? Anything that you think would help or that you wish you would have done differently? :goodvibes:

pacanova 12-04-2012 08:05 PM

Re: On the road to answers. Tips?
 
Are you looking for tips for your appointment or tips for having a child w/Autism? I've been working with children with Autism and their families for 12 years, as a certified teacher for the past 8 and can offer some insight from that perspective. Otherwise just sending lots of :hugs: and positive vibes your way.

luvsviola 12-04-2012 08:43 PM

Re: On the road to answers. Tips?
 
Have you read The Out of Sync Child? It is a really good resource to help you better understand sensory disorders.

From a medical/dealing with doctors prospective...

Get a folder. Mine is manila. Keep track of everyone's phone numbers on the front of it. Write down the secretaries' name every time you call, and star the ones that are helpful. You'll learn who is helpful and who is not. Also write down the nurses' names. That way, when you call and need something quickly, you know who to ask for, and whose voicemail to leave messages on so that you might actually get a call back.

Jen's_4 12-04-2012 10:03 PM

Re: On the road to answers. Tips?
 
Quote:

Originally Posted by pacanova (Post 16006286)
Are you looking for tips for your appointment or tips for having a child w/Autism? I've been working with children with Autism and their families for 12 years, as a certified teacher for the past 8 and can offer some insight from that perspective. Otherwise just sending lots of :hugs: and positive vibes your way.

Either one. I would be grateful for any sound advice, as I am feeling out of my leauge. If it makes a difference, I bet she will be dxed with aspergers. That's if things don't change between now and then...they seem to be getting worse right now, and her appointment is not until next July.

Quote:

Originally Posted by luvsviola (Post 16006475)
Have you read The Out of Sync Child? It is a really good resource to help you better understand sensory disorders.

From a medical/dealing with doctors prospective...

Get a folder. Mine is manila. Keep track of everyone's phone numbers on the front of it. Write down the secretaries' name every time you call, and star the ones that are helpful. You'll learn who is helpful and who is not. Also write down the nurses' names. That way, when you call and need something quickly, you know who to ask for, and whose voicemail to leave messages on so that you might actually get a call back.

I have read the Out of Sync Child, and the Out of Sync Child Has Fun. I haven't really read much other than those, because this is pretty new to us. I am in the middle of Unraveling the Mystery of Autism and PDD. She's always had issues (and she has FCD), but is having more now. Thank you for the file advice, that sounds like a good idea. I have a file for all her EI stuff, and one for all her FCD info.

I did start a huge log today, tracking all her food/beverage intake, sleep, mood, behavior and skin issues. She's had a couple rashes lately and I can't figure out if they are food related or what. Plus since she's displaying some new behaviors (like hand flapping) I thought I would see if I can figure out what might effect that kind of thing, plus I'll have a good log for when certain behaviors started. Is there anything else I should be logging? Any more advice?

luvsviola 12-05-2012 06:12 AM

Re: On the road to answers. Tips?
 
Sounds to me like you are doing all the right things. Good luck! I hope you find answers soon.


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