Slugger's pediatric behavioralist made his FAE diagnosis. We honestly don't get any special help for his FAE. The diagnosis is helpful to me as a parent because it helps me understand he inability to make decisions, his lack of cause/effect understanding, his emotional instability and so forth. Knowing where these problems come from helps me know how to parent him. It helps me know how to help him learn those skills that he's going to need to succeed. Empathy is by far the hardest skill to teach so far. He totally doesn't understand the concept of empathy. But, while Slugger does go to weekly therapy, he doesn't get specific medical interventions for his FAE.

 

contact the University of Washington adoption medical center and talk with Dr. Bledsoe, Dr. Davies or Dr. Kertez. They have one of the countries best centers for FAS. They have a department devoted entirely to FAS. They are the best. And I do believe you can do the testing long distance.

 

Kim, I am so sorry you are struggling with this, too. I know how difficult it is. First, I want to tell you to take care of yourself. Take time away. Please. It was the period between 18 months and two years home that was the darkest for me. I believe that is where you are now, right? I knew by that point the adjustment period should be behind us...the lag time for language aquisition and attachment had passed...and we were still struggling with SO MANY issues every day--every hour. The growing surety that something is terribly WRONG with your child (even when no one elso outside your immediate household can see it) and the overwhelming sense of helplessness when NOTHING you try or do seems to make a difference can be dibilitating.
I am afraid that I can't be much more of a help, than to say I truly empathize with you. I have been trying to get a diagnosis for over a year for Marina. Everyone I have talked to says that they will add her to their waiting list. The people at Texas Christian University have a program specifically for post-institutionalized children and FAS. Their website and materials have been the most helpful for me. Sad to say, but there are very few "experts" out there for FAS/FAE. And even the experts will tell you that there is more that they DON'T know about the disorder than what they do. I would still like to have Marina professionally diagnosed, but life goes on, and ultimately, I don't know if it would better our situation. I mean, what if they gave us a horribly dismal prognosis? Would I be able to accept that and say, "O.K. She will live as a dependent her whole life and never amount to anything?" NO!!! I would still pray, and push, and labor, and hope for the best for her, as I do now. Just like I know you do for the bwins (when you are not at the end of your rope).
No earthly person knows them like you do. No one could love them more than you do. In the end, YOU will be their best diagnostician, doctor, therapist, educator, and advocate.
Sending MANY hugs your way. I hope that someone reading will have the name of a great professional and leave it for you in comments. I will be checking back often, so I can give them a call myself!:0) We gotta keep smiling. What else can we do?

 

http://www.eeadopt.org/

Kim, I don't know if you are aware of this support group, but there are adoptive parents of Russian adopted children with every sort of diagnosis, there are also some professionals who join in and offer their advice. I would post this question to this forum to see if they can offer you advice. When you get to the homepage click the link that says 'support via mailing lists' then 'our mailing lists'. Currently I belong to PEP-L and A-Parent-Russ. They both have many parents who are several years post-adoption although they are described as being helpful with PAP stuff too like finding an agency, etc..

In the mean time hang in there, you will find the resources you need. I will keep you and the bwins in prayer.

 

Kim,
Don't know if it will help, but our Aunt K., I'm not going to use her name, since she is a psychomotrist, (sp?) might be able to steer you in the right direction. I know she knows a lot of people around the state in different testing areas because I visited with her in Jan. about some things. Good luck. We had a GREAT time this weekend with everyone.

Candi

 

I was going to suggest U of Washington too. Our agency recommends them alot. We were set up to use them if we had concerns during Trip #1.

 

hugs

 

http://www.nofas.org/default.aspx

 

I don't have any advice, but just wanted you to know I'm thinking of you and your family. I hope you find some sort of help soon.

((hugs))

 

Kim,

I mostly logged on to say goodbye to you and thank you for all you did for our Daughter over the years in the Gym. I hear you guys are off to China soon and we'll be thinking and praying for you.

You may NOT know this, but I used to be a Disability SWr in Oklahooma. IF your boys may have FAS a free eval and a very good one, can be made a the JD McCarty Center in Norman. IF you call Richard Mann, and explain your urgent need... he may be able to help you get ito the Neuro clinic.

Without trying to sound too harsh... if its FAS... there is often little that can be done other than meds and behavioral therapy...

I'm sure you have our number... so if you need more call me... and please tell your girls that Caroline wishes them well.

John