The Journey to a Parent’s Island

March is Intellectual and Developmental Disabilities Awareness Month. Follow a parent’s perspective to bring awareness this month. Intellectual and developmental issues can be triggers for families which result too often in frustration, grief and loss, bitterness.  FASD (Fetal Alcohol Spectrum Disorder) is an intellectual and developmental issue and it warrants all of us to stay in tuned to those challenges when parenting children. 

The Journey to a Parent’s Island

By: Sarah and Travis Coumbe-Guida, MOFAS Family Resource Coordinators

If any of you have parented a child with special needs, you know that each day is a journey. Some days this journey is filled with joy and other days, it is filled with tears and obstacles. We have seven children and our first four children joined our family after spending time in the foster care system. We also have worked with helping our children find coping strategies for FASD, PDD, ADHD, anxiety, and more.

As parents, we know that although these diagnosis have been incredibly helpful to access services, it does not help give us a magical cure or formula for parenting. Our journey of FASD with two of our children, has made us very aware that it is a developmental and intellectual disability. This is a disability that is 100% preventable. It is our role as parents, to help our children understand their disability and work with the schools and communities to educate others so that our children can have the best possible services and consistency to foster growth.

I remember talking to our teenage daughter the other day about her outfit she selected to wear to school. She loves to be bold and I am proud of her for that. I could see she had on a pair of leggings, but ones that I had not seen her wear before. I asked her to stand up and immediately I realized that she had her father’s long underwear on, complete with the opening in the front for men to go to the bathroom. I said, “Honey, do you know that you have Dad’s long underwear on?” She said, “Yes, I do Mom. My leggings are in the wash so I am wearing these.” We talked about how other classmates may poke fun at the pants and I soon realized that she was not processing what I was trying to teach her in regards to social cues. Instead, I went and found her a pair of my leggings and sent her to school.

Invisible Disability

We balance daily as parents walking the fine line between encouraging our child’s dreams and also helping them understand reality. We feel that our mission is to treasure the dreams of our children, allow them to grow, but with FASD we cannot allow them to continue to fail if they don’t understand cause and effect. So many teenagers will learn from mistakes and grow in their social and emotional skills. Our kids will continue to make the same mistakes and not make the connection in their brain to understand what caused the consequence. It is like an electric line that is sending messages across a wire. Somewhere in the middle of one of these lines, someone cut the line and the messages can no longer be transmitted. A message can still get there, but it will need to find a new route. It is our job as parents to help our children find a new route to their dreams, one that will foster growth, support, and success.

It is our job on this island that we live on, to educate others to understand this intellectual and developmental disability. The toughest part we have found for others to understand, is that our children appear as though they “should” be able to make the same decisions as their peers. The reality is that although they can maintain passing grades and are in activities, their brains are not processing the information the same and they need support systems in place to prevent falls.

Triggers and Temptations

Our teenage son was doing so well with academics and social cues with peers, but with puberty a new set of struggles began. There were so many connections that were being made in the brains of his peers, but suddenly his growth changed or stopped developing. We started to put filters on the computer and all forms of technology in our home, but our son found anyway he could around the filters to access inappropriate images on the computer. We soon realized that he was perseverating on sexuality and no matter how much we “normalized” puberty, talked with counselors, and answered questions, he was not going to stop making these choices inside and out of school, and eventually he found himself sitting in front of a judge at court.

The only things as parents that we can continue to do for our children affected by prenatal alcohol exposure, is to determine the triggers for their behaviors and to remove as many of these triggers or temptations as possible. This will allow them time to learn the social cues necessary for success as they prepare to enter into society. These skills may not ever develop, but some may develop with resources, time, and structure.

The Journey

This journey for us as parents often finds us looking around our units of support and realizing that we are on an island. This island often feels lonely and frustrating. It is then that you realize that the “DABDA phase” of grief and loss with help you process. In order to survive AND thrive on this island, you must accept that your child is a gift and is full of potential and strengths.

There are so many parents out there that are going through your exact struggles and can identify with your emotions. It may mean that you develop a new set of friends to support you. You are the advocate for your child and the inhabitants you invite to this “island of parenting,” are the advocates for you. Best of luck on this journey and be sure to enjoy the ride, knowing daily that one step forward each day will prove small victories. These small victories lead to success in once shape or form. It does not need to be the success that you picture in your mind. Open up your heart and mind to understand the intellectual and developmental disabilities that your child has and then embrace the strengths and the journey that awaits you each day with your child.

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Copyright © 2017 Minnesota Organization on Fetal Alcohol Syndrome | Photos by Amy Zellmer, Custom Creations Photography.

This site is provided to families and professionals as an informative site on Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Spectrum Disorder (FASD). It is not intended to replace professional medical, psychological, behavioral, legal, nutritional or educational counsel. Reference to any specific agency does not necessarily constitute or imply its endorsement, recommendation, or favoring by MOFAS.