Perkins (Alexis' school) just released an AWESOME video series (6 brief videos, ~20mins total).
http://www.perkins.org/whatsnew/charge-webcast.html
The video talks about CHARGE, the medical issues for the kids, the educational issues, and tons of other things! And BEST EVER is Alexis' school psychologist is the STAR of the show. Pam Ryan is one of the main reasons us parents stay sane, mostly because she can offer us support, love and guidance as we as parents go through the education system with our dear children. She's an angel here on earth for us and we love "having to go to Perkins to see her" (we do see Alexis at Perkins as well).
Technically, Alexis doesn't have the genetic diagnosis of CHARGE, but we have adopted the diagnosis because (a) Alexis has a lot of the similar characteristics, (b) medical professionals do recognize "CHARGE" as a diagnosis and it helps starting the conversation, (c) the parent support group (via email) is absolutely spectacular and very helpful with advice and support on all topics (even recipes for things to make for our learning-to-eat-children)
So, enjoy the awesome video!!
Catherine
2 comments:
Hi! I found your blog while looking for information about CHARGE syndrome, because I am going to be working at the CHARGE conference doing child care next weekend and I wanted some ideas of what to expect. Thanks for the reference to the videos... I watched them and they were very helpful!
It was great meeting you all at the CHARGE conference we can not wait to see you in 2 years!!!
Hugs,
Crystal and Eva
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