FASD and how it has impacted our life

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:

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• 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 3^rd grade, we decided to withdraw her from public school and focus on the basics. We could not accept her being given 4^th 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.