If I had known where we would end up on August 31, 2011 I think I would have attempted to keep a journal of the days leading up to this point. The days filled with worry and wondering exactly what we were dealing with.
We wish to keep our family life private. Having read the title of this blog you can certainly see where this journey has led us. We have landed in a place we never thought we would be. Our little Chinese princess has been diagnosed with Fetal Alcohol Syndrome. She is not a "worse case scenario" as the doctor plainly stated but she does have difficulties in her day to day life and probably always will. Since we received this diagnosis I have contacted many people who are very much involved with special needs adoptions from China. Some people I know and trust and have used our real name. Others, I contacted from an email address I made up just for this purpose. No one, not a single person, knows of another child adopted from China who has been diagnosed with Fetal Alcohol Syndrome.
I wonder how it can be that of the thousands and thousands of children adopted from China that our daughter is the only one with a diagnosis of FAS. It would be wonderful if there were none but surely there must be others who have yet to be diagnosed or others whose parents have chosen to keep this diagnosis to themselves to protect their child's privacy. We are doing this so others may have as well. It is that "Mama Bear" that comes out when you hear that even the slightest thing may be askew in your child's life.
I don't know how this story of "Willow" and her life will play out through my words. I haven't really thought it through where I will start. I just want other families out there to know that they are not alone. I also want to know if we are alone. It's okay if we are.
Please share this blog with anyone you think may be interested. I will share Willow's story in the days ahead.
Having worked and lived in China for 6 years I realize that there is a very traditional China where the women do not drink. I have a domestically adopted sister with FAS and have begun to see children abandoned at orphanages displaying these characteristics...usually abandoned later. I also know that the modernization of China is not all good, that it has made smoking and drinking acceptable and that drug and alcohol abuse is beginning to be an issue. I'm sure your Williow is not the only one. Thanks for sharing with others, as they need to be aware that this is only going to increase in modern China. Many prayers!
ReplyDeleteAshley
Thank you, Ashley. We appreciate your prayers. I pray that FAS will never appear on the special needs list. It is a 100% preventable birth defect.
ReplyDeleteI am a mom to 3 domestic adoptives FAS kids,they all have different levels of issues,I am sure ther are more kids from China with FAS then we know of, I think that many kids that are being labelled with Attachment issues are more then likely FAS,it takes allot of harf work patience and understanding to parent these kids, and sometimes no matter what we do and how hard we work the end result is not always what we want
ReplyDeletecolette
I have a 4 yo son from China with FAS. He was adopted in May of this year. Please check out my blog www.bringingerichome.blogspot.com. I have not mentioned on there about the FAS, but you can tell from his facial features that he has it. We were shocked by the diagnosis.
ReplyDeleteColette,
ReplyDeleteI think you may be right that some children who have FAS are misdiagnosed as having attachment issues. Maybe they have attachment issues and FAS.
We really don't know where this journey with Willow will lead us. We are praying that we are doing the right things and we are doing the best we can for her now that we know what we are dealing with.
Thank you for posting and God bless you and your children on this journey!
Could you share more how you came to find her diagnosis to be FAS? I would love to know for very personal reasons myself.
ReplyDeleteAlso, for those of us with special interest who wish to also remain anon, is there any way to contact you via email?
Would you consider writing a post for No Hands But Ours in the Family Stories section? This would get a lot of people to see it. You could remain completely anonymous and provide a link back to this blog if you'd like.
ReplyDeleteThank you for sharing about your son's FAS. He is a beautiful child and I remember following your journey to bring him home.
ReplyDeleteYes, I will be sharing more about Willow's diagnosis and how we finally got to that point. My email address is fasmomchina@gmail.com. I will be happy to answer any questions I can.
I will be writing a post for No Hands But Our in the near future. I have contacted them about it and just heard back yesterday that they are interested.
I have a friend who has that was born in China that has FAS...I will forward your blog to them
ReplyDeleteThere is so much I want to say to you- our 22 yo domestically adopted son is FAS. He is now living in a house with 3 roommates, working at Denny's and has a girlfriend of 6 years. He does this with A LOT of support from us and the various public and private services that we endlessly persue for him. Was this easy? NO WAY! Friends alienated us because of his behaviors, family did NOT get it, noone seemed to know how to work with this kid. There were times that I had to lock myself in thebathroom and scream to God "What were you thinking>????? Would I adopt an FAS kid knowingly? No. Loving Matt and caring for Matt has truly been an emotional rollercoaster and stress. Would I have not done what I did? I would do it again in the situation we found ourselves in. He is our SON, and that was the most important thing. No matter if my sister could not understand that Matt looked like he "got it" and then went and did the wrong thing anyway. It is so important that you tell your story, because one of the most important things that helped me was the support of people like you. Jodie Kulp, fasstars, OFAS yahoo group and the like. I realize that we are lucky SO FAR that our son is OK, 22 and not using, drinking or in jail. Our family paid a big price for that- my 3 other kids , my husband and myself. BTW, my son had no real physical hallmarks of FAS until his teenage years. We did not know what was up with him until he was 14. Keep spreading the word. Thanks! margaret @ chipsmatt@aol.com
ReplyDeleteI wanted to comment to acknowledge the intense journey you and other families are immersed in. I work in the child development field and am involved in the diagnosis of FASD, among many conditions. There is a documentary that I want to recommend to you and others. It is called "FASD: Finding Hope" and is at http://findinghope.knowledge.ca/. Your writing reveals that you have very significant insight in understanding that Willow's difficulties are rooted in a brain-based disability, which is such an important concept to better inform how to support her. You are not alone in this journey. Best regards, SW
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