In 2005 a beautiful baby girl came
to live with us as a foster placement. My husband and I knew that we wanted to
adopt her, if that was an option. She had been in foster care, since she was 3
weeks old and living with a couple that was licensed as foster only. They loved
her dearly, and they had been excellent foster parents to this beautiful baby
girl, that would eventually become our daughter. She came to them with broken bones in
both legs, and they took care of her as she healed. When our daughter was placed
in our home at 9 mo. old, we knew she was currently receiving Early Childhood Intervention
(ECI) to assist her in meeting her developmental milestones. The information
we received from Child Protective Services was that our daughter was born
positive to cocaine, and she had broken legs as an infant. We were told that
developmentally she was doing well and making progress. The ECI case manager
mentioned she startled to sounds (i.e. the vacuum cleaner being turned on).
As our time together grew and we
learned more about each other, we had some questions about our daughter’s
response to certain things. We learned she had reflux, and she needed
medication and a special formula. We noticed that she would cry during play
times, when we would ask her to bring us a toy or a point out a familiar item
in the book. The teachers at her child care setting reported her crying at
times and not understanding what it was that made her cry. She also knew the
tune to every song, and the teachers were impressed at her memory related to
music. As time went on, the moments of frustration for our daughter grew. I
asked our ECI case manager for a speech evaluation because she was not saying
the number of words recommended for a child her age. I asked for an
Occupational therapist to complete a sensory eval, and I asked for an Infant
Mental Health Specialist to assist us with understanding our daughter’s
response to requests.
The speech evaluation was
completed, and our daughter was falling into the typical range of communication
for her age. The Speech Language Pathologist planned to follow up quarterly to
ensure she progress in her speech/language development. The Occupational
therapist completed a sensory evaluation, and she gave us some tools to assist
with oral sensory seeking needs. The Infant Mental Health Specialist, which was
a Licensed Professional Counselor came to our house to observe our typical
family routines and she completed the same observation at the child care
facility. Throughout this time together as a foster family, we approached the upcoming termination hearing. This was
going to be the moment where we learned if it looked like adoption was possible.
After many placements and failed attempts to conceive, we were anxious. When I
say anxious, I mean I was a “hot mess”. The
LPC working with our family came to the termination hearing as a way to support
us and learn more about the history involved with our daughter. I never knew
how important this step would be until later.
After multiple observations at a
variety of settings, we met with the Infant Mental Health Specialist, LPC to
review her clinical observations. She explained that she thinks that our
daughter is not understanding what is expected of her. She gave specific
examples, and then she asked me what I remembered hearing during the
termination hearing. Ummm…I was supposed to be listening to details??? I was
listening for whether or not we would be able to adopt her. I was scanning the
room for anyone that might be a birthparent and wondering what they might be
thinking and feeling. I was conflicted with sorrow and potential joy. I was not
processing much. Michele, LPC, let me know that she heard CPS report a history
of extensive alcohol abuse throughout the pregnancy. This was new information
to the already disclosed info of 1. Born positive to cocaine, and 2. Physical abuse-
broken legs. Michele encouraged us to see a geneticist to inquire more about
Fetal Alcohol Spectrum Disorder (FASD).
We went to the Child Study Center
in Fort Worth, Texas for the genetics evaluation. They spent time measuring
different facial features, feeling her body for tone and muscle structure, and
we talked about her developmental milestones. The doctor stated that she felt
our daughter had some of the FASD symptoms, but not all of them. She was glad
to hear we were already receiving early intervention services, and she stated
we should continue with therapy.
Our daughter is now 12 yrs. old. We
have been on such a journey of finding out more about her needs (which have
grown and intensified), how to meet her needs, and how to support our needs as
parents and family. Some of the needs she has experienced along the way:
·
- Poor
coordination- dancing, cheerleading, karate, and soccer have been
challenging for her. What has worked best? Individual sport accomplishments.
Roller skating, skateboarding, riding her bike, and hiking. Group activities
have caused a great deal of anxiety for her because she sees that she is slower
and has to think about the next move, direction, and will forget the routines.
- Hyperactive behavior- it is hard for her to
sit at a desk for learning. At times, it seems like there is not enough stimulation
for her (across all settings). She needs more sound, more touch, and more
attention. It can be draining at times. What has worked best? Keeping her busy.
Having multiple people that know her needs, so there are breaks for the people
working directly with her. This way she is with someone that is refreshed
(hopefully) and is ready to pour that time and energy into her. Giving her sensory breaks and tools have also been helpful.
- Difficulty with attention- not only do we see this in
school, but this is a huge struggle for her at home. She can answer
questions with “yes” or “no” and have no idea what she has just answered.
Her clothes are almost always put on inside out, not matching, and
backwards. She has had an entire outfit on backwards before. She forgets
to put things back where she found them. She loses much of what she
touches. I can’t tell you how many TV remotes she has lost. It’s almost
funny at this point (almost). What has worked best? Lowering the
expectations. Making sure other caretakers and teachers understand they
need to lather, rinse, repeat the information and keep their cool. I have
recently made some picture flip cards to help her get through routines, so
she can do this independently and remind her of the details needed for
those routines.
- Poor memory- some of these examples were previously mentioned, but I
will say that we spent about 3-6 months on the number 7 when she was about
6 years old. She could count from 1-10, but she often would forget about
the number 7. My dad came up with the idea of taping it onto her shirt.
She thought it was funny, and suddenly she remembered the number 7. What
has worked best? Making songs out of things that are important. She can
remember words to songs that I can’t even remember. Making learning funny.
She can remember funny lines from movies that she saw years ago. This
child forgets to wear underwear on a regular basis, and she can sing many
of Pink’s songs word for word. I am amazed and baffled on a regular basis
by her brain and how it works.
- Difficulty in school (especially with math) - for our daughter I would
also add reading to that category. It took her about 5-6 years of intense
teaching, special reading teachers, clinics, programs, etc. for her to
learn to read. I would say the same intensity needed is true for math.
What has worked best? Having math taught at a visual level. The curriculum
that worked best for her was Math-U-See. Being able to touch math, write
it on a dry erase board, and write it on other services helped. She is
currently in a Resource classroom for English, Language Arts, and Math. These
subjects are taught in a room with approximately 10 or less students, and
she has more time in these subjects.
- Learning
disabilities – At the end of 3rd
grade, we decided to withdraw her from public school and focus on the
basics. We could not accept her being given 4th grade work, and
her not being able to read and do simple math. We hired a private teacher,
who specializes in children that learn differently. I call her our angel. She
is the person that really pulled some concepts together for our daughter. This
year we returned to public school for middle school, and she is thriving
with her special ed. IEP plan and programming. What has worked best?
Knowing that it is okay to make changes along the way to meet her needs. I
didn’t have to commit to homeschooling forever. I could come back to the
public school and see what they had to offer our daughter.
- Poor
reasoning and judgment skills-
Just today I picked up my daughter in the parent pick up line, and she ran
in front of my car to get in the back seat. You should have seen the
teachers and volunteers shriek as she jumped in front of my car. She never
thought about walking around and behind the car to enter her seat. She
doesn’t think to look out for cars when crossing the road. She can be
convinced of many simple things that many children would know are scams or
jokes. What has worked best? Practice, practice, practice. We talk about jokes
and how people trick people. We work on counting money and recognizing coins.
This area still scares me, quite honestly. I am worried of the socially
advanced children taking advantage of her. Her teachers and the school
counselors understand that she is very naïve and needs close supervision.
This also means at home, she needs more supervision than most 12 year olds
that I know.
In addition to the
above areas, I would say one of the biggest struggles our daughter has is with
her social/emotional development. She has been in counseling and continues to
receive counseling to help manage her mood, rages, and practice coping skills.
There are FASD symptoms I haven’t covered in this story, which you can research
at www.NOFAS.org .
Within the past
year, our daughter received the official FASD diagnosis while being
hospitalized. We also have other diagnoses and alphabet soup letters in our
life, but so many of the symptoms cross over from diagnosis to
diagnosis. One of the main differences with this diagnosis are the abnormal facial
features and physical differences. Our journey has been hard, and it has also
been full of learning how to meet the needs of a child where they are at developmentally and mental health-wise.
I am thankful for Early Childhood Intervention and the Infant Mental Health
Specialist, Michele, which encouraged us to inquire about FASD. Early identification
and intervention can change the trajectory for that child and family! I am thankful we had that guidance and support
from the geneticist, which encouraged us to seek therapy and plant the seed for a
need of prolonged therapy and special education. I am thankful for our school district
that has an extensive individualized approach to meeting our daughter’s needs. I am thankful to our angel/private teacher, who picked our daughter and us off the floor and said "yes, she can do this!". I am thankful to our local Tarrant County MHMR, which provides wrap around
support services and respite. I am thankful to the many counselors over the years. We
have a team, and we couldn’t parent our daughter at the level she needs and
deserves without those resources.
For parents and
professionals wanting to know more about Fetal Alcohol Spectrum Disorder, the
best starting place for us was www.NOFAS.org.
For parents with concerns about your
child’s development, talk to your child’s pediatrician. Call your Early
Childhood Intervention (Part C) provider and request a developmental assessment.
This parenting journey is not easy, and you don’t have to do it alone. There
are many resources for parents, educators, and professionals working with
children exposed to alcohol in utero. We are still learning more and more about
how to meet our daughter’s needs, and my hope is that she is able to live the
life she dreams of as an adult and that she has a childhood full of love and
laughter.
