Story of Hope

The adoption coordinator walked through the Kirov orphanage drawing room doors with a 7 pound, 4 ounce swaddled baby girl who was just over 4 months old.  Alexandra, as she had been named by her biological mother, would become the daughter that “grew in my heart, not in my tummy.” Thus we began, in August 1994, an unbelievable journey of love, bewilderment, delight, concern, happiness, frustration….the gamut of emotions.

I knew that I should be concerned about fetal alcohol exposure; after all, we were in Russia, a country with a high alcoholism rate and a place that seemed to have a vodka kiosk on every corner. But she did not have the facial anomalies that were said to be the trademark of a child so exposed.  What was most evident for many, many years was that due to her prematurity (born a full 3 months early at 2.4 pounds) her developmental delays needed to be addressed aggressively and relentlessly, but even then, it seemed that she did not “catch up.”  The words of our family practitioner kept resonating in my head: “I have delivered lots of preemies; they catch up by the time they are 2.”  What was wrong?  He said she would catch up.

The alphabet soup diagnoses and a vocabulary new to me came along with a host of specialists:  cardiologist; child development specialist; functional vision specialist; gastroenterologist (2); nutritionist; geneticist; neurologists (4); ophthalmologist; psychiatrists (4); psychologist (2); neuropsychologist; occupational therapists; movement therapists; speech therapists; social workers; adaptive physical education teachers; special ed teachers.  To each one I said:  I believe she has Fetal Alcohol.  They either shrugged their shoulders or looked at me like they did not know what I was talking about.  They didn’t!

Managing the appointments, services, and meetings was overwhelming, to say nothing of the feelings that went along with each.  I felt like I was explaining something that no one heard.  I was looking for an answer that no one seemed to have. We were all treating her  like a Gordian knot: trying to unravel it solely by manipulating it.  It was frustrating…one step forward, 10 in place, and 1.5 backwards.  I always had this gut reaction that we weren’t “quite getting it,” but the recognition of that reaction was hard to verbalize.  I knew it but didn’t really know what to do with the feeling.  I got frustrated with different practitioners.  I would recommend to teachers ways to help her learn, but I didn’t know why I was saying what I was saying.  I kept thinking I could come up with the suggestions first because I knew her best because I was her mother, and secondly, the ideas came from my knowledge as a psychologist. Other times, I understood what was being tried wouldn’t work, but I didn’t know why.  But the reality was I wasn’t getting it either.

With the advent of Google, I found a diagnostic clinic approximately eight miles from the major medical specialists she had seen.  She was diagnosed with an FASD at age 10 ½.  Then I attended Diane Malbin’s training regarding the neurobehavioral approach.  This three-day intensive training changed the trajectory of her life.  Sasha had brain damage: we needed to change the environment not change her.  It sounds so simple that I often want to say “duh.” But it is easier said than done, even now that I can verbalize it.  It’s hard to do because of who I am and what I have learned about what “works,” but doesn’t work for my daughter.  For example: 1) Slow down…. her processing is slow, so give her more time to respond. I am a fast-paced person: walk fast, talk fast, process fast, react fast. It works for me but none of this works for her; 2) Fewer words are better…. only about 30% of the words she hears are processed.  But like most people, if someone doesn’t get something, I explain it more, over explain it.  I feel like I am always retraining myself.  I can’t just be who I am, I have to think slow down; wait; use relevant words only. Over the years, before I really “got it,” I would make changes in the environment, but it was so hard to do.  And the pace of life made it hard to make those changes part of the fabric of our lives.  And it wasn’t necessarily successful for whatever amount of time we were able to keep the change in place, adding to the change’s demise.

With the specialized attention, she thrived, yet it became undeniable that many issues were not resolved; she does, after all, have brain damage.  But that does not stop her.  She has a spirit about her these days that is heartwarming. But we needed to create the environment for her to shine, to be who she is. After many years of hard work on her part and mine, and others supporting us, she is happy and fulfilling her dream of being more independent from me and doing activities and work she loves to do.  She has friends.  She has fun.  She IS fun!  And loving.

Hard work? Yes!  Confusing? Yes!  Frustrating? Yes!

But just think of what it is like her inside her head….my feelings to the nth degree.  Amazingly, however, she gives more than she receives. What a gift to my life.