Beginning of the Journey

Our first placement into our home also became our first adoption.  During the first year it became apparent that there was something different about “D”.  He came at 3 years and did not act or react in any expected ways.  At first he was diagnosed with Reactive Attachment Disorder and Post Traumatic Stress Disorder.  These made sense but he still seemed so confused all the time.  It never seemed to be purposeful like was to be expected with RAD.  As we continued to struggle with “D’s” behavior it also became apparent that his infant sister was also showing signs of something not being “right”.  “R” was a happy baby most the time but her moods cycled very fast and she never slept.  By 3 she was still not sleeping through the night.  By then the kids had been with us for almost 2 years and no matter what we tried the odd behaviors and moods continued.  Finally, the pediatrician sent us to Genetics for “R’s” issues and “D’s” therapist recommended he also be seen.

The first visit to the geneticist was a bit nerve wracking.  I had no idea what to expect when we went.  I had form after form to fill out with as much birth history as we could provide.  Luckily we did have lots of information from DSS and also from Birth family.  This helped in this process so much.  I spent hours pouring over the paperwork and managed to get it filled out.  When we walked in for the first appointment the geneticist looked at “R” and said he was fairly sure that she was FAS.  I was so surprised as I had never seen a picture of a Caucasian child with FAS.  He put down a picture of a little girl of the same age who could have been R’s twin but for the hair color.  He explained that she had all of the classical features of a child with FAS.  He then took R and measured her facial features and looked for other features associated with prenatal exposure to alcohol.  We already had filled out the paperwork that showed that she had been exposed to large amounts of alcohol and meth in utero.  When he was done he showed us how the measurements and other features along with the behavioral components all supported his earlier thoughts of Fetal Alcohol Syndrome (FAS).  He did say that we would be running tests to rule out other genetic conditions first.  He then got to work evaluating D.  His features were not as pronounced but with the behaviors and also history of exposure he thought D was mild Fetal Alcohol Syndrome or what is now known as partial Fetal Alcohol Syndrome (pFAS).  We did the blood tests on both kids to rule out any other conditions.  Within a couple weeks we got back the final diagnosis on both children that in fact they were FAS and pFAS.

I remember when he began giving us his thoughts on the children having FAS.  I cried when he told me R was most likely FAS.  I didn’t when he explained about D.  For him it finally answered why none of the behavioral modifications or parenting we had done had worked.  It felt as a relief for us in some ways.  But with R I think I had deluded myself into thinking we had gotten her early enough to truly “fix” it all and I now knew that was not true.  I remember the doctor looking at me and saying “Remember these are the same exact children  you walked in with.  You just know more about what they need now.”  I carry that with me always.  I remember that I have to make changes for them as they cannot make them for me.  That these children are still my little miracles who deserve all the love I can give them.  So our journey began…


About fasmom

The adoptive mom to 12 wonderful children who are affected by Fetal Alcohol Spectrum Disorder and other issues including Reactive Attachment Disorder, bipolar, schizophrenia, CP, epilepsy and oh the list goes on...The thing is these children have taught me things about myself I never knew and would not have missed out on learning. Married to an amazing man and enjoying life on a sheep ranch.
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2 Responses to Beginning of the Journey

  1. christina breazeale says:

    At least you were able to afford the geneticist. We adopted 2 boys from family member to keep them out of foster care. All of our savings are gone and still fighting after being turned down for medicaid (4) times. All the experts say that the youngest needs to see a geneticist but we do not have the money.

    • fasmom says:

      I am so sorry Christina. In our state there is a genetics clinic that will see kids who cannot afford it. They have a grant. I wish every state would be like that. It is sad that money can keep people from getting services and with the diagnosis they might actually be able to get medicaid but need medicaid to get the diagnosis. What a mess! I am so sorry.

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