Today I had the follow-up appointment with Dr Chang at the University Fetal Exposure clinic. It was such a positive meeting that I will be sad that he is due to retire in 18 months. I would love to walk this challenging journey of parenting kids with prenatal exposures with him longer than that, but it's a good start. As the mom to kids with multiple hidden disabilities I don't take it for granted anymore that the doctors, nurses or therapists we work with will all care about our kids as individuals. When I find one, we work hard to continue our care with them and understand the positive contribution they bring to our lives.
The outcome of today's meeting was an affirmation that both kids have brain damage from prenatal alcohol exposure. There is no gentle way to write that, and it is a fact that will not change. It's simply what happens when a pre-born baby is exposed to alcohol and drugs. It was a relief to hear that what I had been suspecting, self diagnosing and researching for years was truly where we were at. The exact diagnosis - FAS, FASD, PFAS etc is still being settled, but there is no question on the damage that has been done.
The best part of today's meeting was to see in the testing results that the things we have been doing in our homeschool and home are exactly what he recommended. Just seeing it on paper made my mommy heart so happy. We can do this - we can homeschool our FASD kids and meet their needs well. Particularly because we have the flexibility to change direction as needed and have no requirement over site hindering what we intuitively know they need. It was good to see the things I had discovered about them - strengths as well as weakness measured in some quantifiable way that 'proved' we were on track. It's the hard part of homeschooling - there just are not many checks and balances so you often wonder how you are doing. This meeting was a blessing to me and an encouragement to keep doing what we are doing - because it is working.
5 comments:
I just started reading "The Broken Cord," after seeing that you had been reading it. What an incredible journey--what a challenge and heartbreak and whole different gauge for joy and success. Your family has been on my heart, and as I read this book I pray for all of you. Thank you so much for sharing some of these realities of your parenting. Such discussion is vital to adoptive families--I am sobered by the possibility that this is what we may be looking at for our lives as we are going to adopt. Thank you for the way that you love your kids--that shines the love of God in such a far-reaching way.
Thanks TScarlet - not everyone thinks that it is good to share these realities of parenting disabled kids. I think it's important because we are all a part of the larger community loving and living with them - even if we never adopt. I covet your prayers.
Sometimes seeing it all down on paper, with quantifiable steps and results to look at, gives us a little reassurance, doesn't it? Well done. I, too, am in love with our medical providers, therapists, etc. who are on this journey with us. And they are...
Yea for you Dorothy!
Keep up the good work!
You're in my everday prayers!
Love Ya,
Miss Lila in Atlanta
lilahuggins@gmail.com
It is hard to explain to some people why it is such a relief to get a diagnosis. It doesn't change the reality that has always been there, it just affirms what we know to be true. When we are in the trenches, it helps to have confirmation that it is not us that is imagining all of this. I am glad it was an affirming day. I am sure going to miss Dr. Chang but I like the way he is planning very carefully to get his successors ready to take over his important work.
Some people say it doesn't help to get a diagnosis, but for me it makes a huge difference...every time I need to be reminded that the behaviors that come along with this diagnosis are stemming from brain damage...the kids are not just out to get me!!
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