freeindeed Posted July 21, 2012 Share Posted July 21, 2012 So, yesterday, the neurologist told us that dd4's EEG showed very slow brain activity & that she is severely developmentally delayed. He also said that she will not be "functional" as a "normal" child. He also based his diagnosis on observing her and asking for our input. While this was not a surprise for us, the words are still painful and difficult to digest. When we adopted her, we were not aware of the significance of her delays...all we were told that was that she is visually impaired (which she is.) Right now I am feeling anger and sadness, in addition to just being plain overwhelmed. I love my daughter, but I feel like I've been blindsided. I am really struggling with this. Any advice and encouragement would be appreciated. Quote Link to comment Share on other sites More sharing options...
Grover Posted July 21, 2012 Share Posted July 21, 2012 :grouphug: I don't have any experience or advice, except to say she's still the same kid you loved before you had this confirmed. :grouphug: Just imagine her life without you - she's the luckiest little girl in the world. Quote Link to comment Share on other sites More sharing options...
houseofkids&pets Posted July 21, 2012 Share Posted July 21, 2012 I am sorry for all that you and your family are going through. I can't even imagine. I don't have any words of advice, but I wanted to send some :grouphug::grouphug: and prayers. Even if you already suspected what the outcome of the EEG would be, you still need to take the time to grieve. It is heart breaking, but she is still your daughter and when you are ready, you will continue to move forward and do the best for her. You need to think about her, but don't forget to take care of your own needs too. Quote Link to comment Share on other sites More sharing options...
kareng Posted July 21, 2012 Share Posted July 21, 2012 (edited) :iagree:with Grover. She still is the same child before the "diagnosis". I don't put incredible weight in what doctors and other "experts" say. I've seen love and support and encouragement accomplish amazing/miraculous things, things that the "experts" say could never happen. I will be praying for you and your family as you wrestle with this information and what to do with it. Hugs coming your way :grouphug: ETA -- I didn't mean to imply that the diagnosis isn't very serious and discouraging or something to be reckoned with. I'm sure that's so very difficult to do. And I'm also not suggesting that you put your head in the sand and be like PollyAnna. I just mean that you just never know what love and prayer can do :-) Edited July 21, 2012 by kareng Quote Link to comment Share on other sites More sharing options...
Barbara H Posted July 21, 2012 Share Posted July 21, 2012 It is very good that you are taking time to notice your feelings and allow your self to talk about them and take time to process. Are you at all connected to any local support of other parents of kids with disabilities? Maybe not right now, but if you reach a point where you want to read something, I would recommend the book You Will Dream New Dreams. The title sums it up pretty well. http://www.amazon.com/You-Will-Dream-New-Dreams/dp/1575665603 Quote Link to comment Share on other sites More sharing options...
herekittykitty Posted July 22, 2012 Share Posted July 22, 2012 I don't have any great words of wisdom but also wanted to say your daughter is very lucky to have you. I think you will make peace with the diagnosis but give yourself time. Quote Link to comment Share on other sites More sharing options...
songofmyheart Posted July 22, 2012 Share Posted July 22, 2012 I am so sorry for what you're going through right now. :grouphug: No words of wisdom, although I do agree with kareng. Quote Link to comment Share on other sites More sharing options...
freeindeed Posted July 22, 2012 Author Share Posted July 22, 2012 Thank you all. I am in a better place today. I appreciate the encouraging words and the prayers. I am grateful for boards like this. Quote Link to comment Share on other sites More sharing options...
freeindeed Posted July 22, 2012 Author Share Posted July 22, 2012 It is very good that you are taking time to notice your feelings and allow your self to talk about them and take time to process. Are you at all connected to any local support of other parents of kids with disabilities? Maybe not right now, but if you reach a point where you want to read something, I would recommend the book You Will Dream New Dreams. The title sums it up pretty well. http://www.amazon.com/You-Will-Dream-New-Dreams/dp/1575665603 I am hoping to connect with a local support group if one is available. I just ordered the book on PBS. Thank you. Quote Link to comment Share on other sites More sharing options...
RamonaQ Posted July 22, 2012 Share Posted July 22, 2012 I have no advice but want to say that I think every feeling you are experiencing is valid. I am sure the grief and sadness are huge, but I also know that there will be a time when you will be ready to move forward and continue to do all that is good and right for your daughter and your family. My prayers are with you. :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
renmew Posted July 22, 2012 Share Posted July 22, 2012 I know it is difficult, and I am sorry. My son is high functioning autistic, which can be especially difficult in the way that many people who spend just a little time with him think he is fine and don't understand. It's only after some extended time or one of his bad days, and then people see. I feel like people may judge me as a teacher, becausemy son isn't a well behaved or academically minded student. Read this poem. http://www.our-kids.org/Archives/Holland.html Quote Link to comment Share on other sites More sharing options...
Guest gardensparrow Posted July 24, 2012 Share Posted July 24, 2012 I'm sorry you're feeling a bit overwhelmed by your daughter's diagnosis. I think most parents would have similar emotions in your shoes. So, I just wanted to hop on here and let you know I'm joining the others on this thread in praying for you. Also, I know you mentioned you were looking for some support during this time, so I wanted to suggest that you call the counselors at Focus on the Family for free at 1/855-771-HELP. I work there and I know they've often been able to make referrals for support groups, etc. for parents like yourself. So, might not hurt to see if they could direct you anywhere. Lastly, if you're still looking for some material on this subject, you might want to check out the book From Stumbling Blocks to Stepping Stones: Help and Hope for Special Needs Kid by Shari Rush Furnstahl. It's about another child that had similar developmental delays and how she overcame these challenges. So, may be encouraging to get a hold of. Just a thought. Well, hang in there and know someone out there is thinking of you and praying for your family. ((Hugs)) Quote Link to comment Share on other sites More sharing options...
beck Posted July 25, 2012 Share Posted July 25, 2012 I know I'm late reading this, but I'll also be praying for peace for you. My youngest was diagnosed with Fetal Alcohol Syndrome a few months ago. I KNEW it...really I did....but hearing the eval team say those words still felt like getting punched in the gut. It's really hard. I'm sorry.:grouphug: Quote Link to comment Share on other sites More sharing options...
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