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Understanding Fetal Alcohol Spectrum Disorders

FASD Image

Fetal alcohol Spectrum Disorder (FASD) is an umbrella term that covers a range of birth defects that can occur in a baby whose birth mother drank alcohol at any time during pregnancy. FASD is not a diagnosis but refers to a group of conditions which may occur. It is a spectrum which means that the impacts of FASD can range between very mild to significantly impactful on the individual.

The possible diagnoses within the range of FASD disabilities include:

  • Fetal Alcohol Syndrome (FAS)
  • Fetal Alchohol Effects (FAE)
  • Partial FAS (pFAS)
  • Alcohol-Related Neuro-developmental Disorders (ARND)
  • Alcohol-Related Birth Defects (ARBD)

While the impact and effects of FASD vary, there is no evidence to determine exactly how much alcohol ingestion will impact a child. The impacts of FASD are a result of alcohol consumption during pregnancy. When a pregnant woman drinks; so does her child. The alcohol enters the developing fetus’ system through the umbilical cord and through the amniotic fluid. The alcohol also remains in the babies developing system for a longer period of time because the baby is smaller and takes more time to break down the alcohol.

The effects of alcohol on the developing fetus can cause a range of physical disabilities, brain and central nervous system disabilities, and behavioural problems. The effects that children are born with are permanent and are referred to as the primary disabilities. The secondary disabilities are those that children are not born with, but may develop later in life.

FASD is a complex disability and those affected may need lifelong support. Prevention, identification and intervention are key to improving this situation. Children with FASD fair the best when they are in stable and loving homes.

Signs of FASD

The signs of a child who is living with FASD are varying and diverse. The diagnostics should be left to a physician. It is critical to have a doctor do a thorough assessment to rule out other medical or developmental issues that might be treatable. Part of the diagnosis also involves a team of professionals to assess the medical, psychological and developmental functioning of the child.

When considering FASD there are currently four diagnostic criteria in Canada.

  1. Growth deficiency
  2. The FAS facial phenotype
    a. absent philtrum (ridge between upper lip and nose)
    b. small eye opening
    c. thin upper lip 
  3. Central Nervous System Abnormalities
  4. Prenatal Alcohol Exposure

There are also many other physical symptoms related to FASD such as facial abnormalities, kidney problems, vision and hearing impairments.

There are so many ways that a child who is exposed to alcohol prenatally can be affected, it is almost impossible to list them all. Within FASD there are primary and secondary disabilities that may impact a child.

Primary disabilities are the direct result of a physiological change that occurs in utero. The change is irreversible because of alcohol exposure. These changes are a spectrum and range in severity for each individual. Each person is impacted differently and may not display the listed disabilities; always consult a physician if you are concerned or believe your child is impacted by a FASD.

Primary disabilities:

  • Physical birth defects
  • Physical health problems
  • Learning needs
  • Memory difficulties
  • Short attention span
  • Difficulty communicating feelings appropriately
  • Difficulty understanding the consequences of their actions

These primary disabilities can cause significant affects for a child within the home, school and social settings. Without early diagnosis and an effective management plan for ongoing supports, people with a FASD may develop secondary disabilities. These secondary disabilities occur because affects and behaviours can become more difficult when left untreated. The child may experience these secondary impacts at any point. These secondary impacts include:

  • Mental health; depression, irritability, anxiety etc.
  • Difficulty managing their behaviours
  • Disrupted school experience; due to behavioural and educational needs
  • Alcohol and drug abuse
  • Employment, handling money, paying rent, etc. become more difficult tasks
  • Difficulty managing social relationships and boundaries
  • Inappropriate sexual behavior
  • Involvement with the law

FASD’s are serious diagnoses that only qualified professionals should make, as there are many other factors that can contribute to a diagnosis. When considering a potential adoptive child with a FASD, you should speak with a specialist, and access the many resources available to help you locate a professional in your area or community. The good news is that a child living with the affects of FASD has the best chances and opportunities when living in a stable and supportive home. The safety and security of a forever family can assist that child in achieving better outcomes.

Managing FASD

The physical defects and mental challenges are typically life-long. The psychological and emotional challenges associated with FASD can be difficult to manage. Be sure to speak with your doctor or health professional about local support sources for your family.

There are various treatment plans that you can explore; however it is important to consider what the right services and supports for your child may be. Each child’s symptoms are varied and require supports and services that work for their unique needs. You may need to explore many different treatment plans until you find the right one; however, finding the right services are usually the key to successfully assisting your child through some very challenging issues and periods.

FASD is diagnosis without a cure.

Parenting a child with FASD

Adoptive parents should consider all the implications of raising a child with a FASD to ensure a successful placement. Seeking support from a professional and talking to other parents of children living with FASD is a good place to start. This support can be invaluable in making the placement successful. Parenting a child with a FASD can come with life-long challenges for both the family and child.

Creating a structured and controlled environment is very important for all children, and especially those with special needs. Children with a FASD require different rules and consequences for their behavior than other children. Despite the needs that children living with a FASD may have; parenting them is rewarding and special. You still experience your child’s firsts and they can have a number of strength’s and abilities. A child living with FASD has the best opportunities and potential when they are living in a loving, supportive and stable home. As an adoptive parent this is what you can offer them.

Finding what works for your child will take some trial and error; however, here are some suggestions that may be helpful:

  • Implement daily routines
  • Set boundaries – create and enforce simple rules and limits
  • Reward and reinforce positive behavior
  • Teach daily living skills
  • Carefully choose other caregivers who understand your child’s needs

Children living with FASD present with differing symptoms and needs. These include:

  • Learning difficulties

“I try to listen in class but before I can understand; the teacher moves to another subject.”

  • Behavioural difficulties

“I DON’T WANT TO WEAR MY COAT TO SCHOOL. I HATE IT! I DON’T WANT TO.”

  • Attention difficulties

"I can't sit still at circle time. My legs always want to be moving. “

  • Difficulty making positive choices and poor impulse control

"I burned myself after touching the oven door. Just like yesterday.”

  • Memory Issues

"Mom told me to change my clothes, brush my teeth and then….I can’t remember the last one!”

  • Difficulty during playtime

"Johnny left his toy to go to the bathroom so I took it. Now he is mad at me and I do not know why. He left it, it is mine now.”

  • Language difficulties

“My teacher said to finish my equations quietly and on my own but I do not understand so many big words all at once.”

  • Decreased fine and gross motor skills

“Tying my shoelaces is difficult; my fingers start to hurt.”

  • Attachment difficulties

Tips for Parents:

Create structure, routine and consistency.

Bring in the positive and always reinforce their positive behaviour.

Try and go out with them to enjoy activities they like.

Make sure what they are watching and participating in is appropriate for them.

Set realistic expectations; do not ask too much of them.

Make sure you surround yourself with good supports.

Helpful links and resources for FASD

FASlink - http://www.faslink.org

Public Health Agency of Canada - http://www.phac-aspc.gc.ca/hp-ps/dca-dea/prog-ini/fasd-etcaf/index-eng.php

Health Canada, First Nations and Inuit Health Branch - http://www.hc-sc.gc.ca/fniah-spnia/famil/preg-gros/intro-eng.php

Health Canada, First Nations and Inuit Health - http://www.hc-sc.gc.ca/fniah-spnia/index-eng.php

Department of Health and Human Services, Centers for Disease Control and Prevention, Fetal Alcohol Spectrum Disorders - http://www.cdc.gov/ncbddd/fasd

National Organization on Fetal Alcohol Syndrome - http://www.nofas.org

AddictionCenter: https://www.addictioncenter.com

FEELING DIFFERENT: THE EXPERIENCE OF LIVING WITH FETAL ALCOHOL SPECTRUM DISORDER

Content resources

Health Canada - http://www.hc-sc.gc.ca/hl-vs/iyh-vsv/diseases-maladies/fasd-etcaf-eng.php

Kids Health - http://kidshealth.org/parent/medical/brain/fas.html#

Mayo Clinic - http://www.mayoclinic.com/health/fetal-alcohol-syndrome/DS00184

Rainbowkids - http://www.rainbowkids.com/special-needs/developmental-needs/fetal-alcohol-syndrome

Kids to adopt – http://kidstoadopt.org/adoption-resources/medical-conditions/about-fetal-alcohol-syndrome/#ixzz2AmVMUSHV

References

Edmonton and Area Fetal Alchol Network (EFAN), (n.d.). Fasd stratagies not solutions. Retrieved from: http://www.faslink.org/strategies_not_solutions.pdf

Streissguth, A. P., Bookstein, F. L., Barr, H. M., Sampson, P. D., O'Malley, K., & Young, J. K. (n.d.). Retrieved from https://www.signup4.net/Upload/USTR10A/ASSE34E/EVENSEN%20Risk%20Factors%20Streissguth.pdf

U.S. Department of Health and Human Services. SAMHSA Fetal Alcohol Spectrum Disorders Center for Excellence. (2007). Adopting and Fostering Children With Fetal Alcohol Spectrum Disorders. Retrived from http://www.fasdcenter.samhsa.gov/documents/WYNK_Adoption.pdf