We have two daughters, adopted in Russia in 2000... One of the last one trip, one week adoptions I'd think.
Our youngest has FASD. I "knew" she was affected from the moment we met her. They are bio sisters, were a package deal and no way were we going to say no.
I think because I always saw her quirks and glitches through the prism of FASD, we parents have suffered very little additional frustration....many (who don't get a dx for their kids) acquire our own little dose of PTSD!
I realized when she was in the 4th grade that she would never earn a standard HS diploma. It was sad and freeing at the same time. She is a joy to have in our lives. Funny, sweet, loving, hardworking....quick to become exhausted, often confused, open and honest when she feels safe. My thinking has always been that we would never be able to knock the corners off her square peg, that we had to make sure the round hole was big enough she could fit in it which room to be different.
I'm on a group for parents with teens and young adults with FASD. What an endless pit of misery. So many of these families had no idea of FASD, before adoption, during the process or anywhere along the way when the child was young enough to parent differently. I hardly ever post there because our experience with our almost 16 year old is so positive....I do not want to rub salt in their wounds....but.....
I do want to encourage anyone fence sitting, dreading pursuing a formal Dx....do not fear it and do not put it off. Things can get so so so dreadfully bad for these kids as they become young adults. Sure, (hearing the diagnosis is) so sad....I gave up "Back To School Night" after 9th grade.....it just made me sad about how low her abilities are.....and made me feel a distance from her, fear being a crappy element in a relationship.....but she is not sad! She is love personified. She has space in her life so she can express her compassion for others. She has a sense of humor that delights and an eye for beauty in the world that allows her great artistic expression.
Will our retirement life look different from those with typical kids? Very likely. Will it be good life? With her in our lives, it will be without a doubt.
Don't let fear slow you down. Get the most inclusive Dx you can, you can always back off later if it's limiting. Build a case history that explains their quirks as different, not as failures. Set everyone up for successful transitioning to young adulthood.
I know some here don't want to hear about problems....and the parents on that FASD Teen Young Adult site don't want to hear about successes! (They are so down that they just need a place to vent with other BTDT parents) I have feet in both communities....many communities. Bottom line, when it comes to a diagnosis don't wait!!!