SOS Project

The SOS project was written and designed collaboratively by Jodee Kulp and Karen Johnson, MS, to help families “love, laugh and live with” tough kids and to help professionals support children, young adults and caregiver families.

Project SOS has evolved into Minnesota Organization on Fetal Alcohol Syndrome Family Seminar Series and the original writing released to Better Endings New Beginnings and ToolBoxParent. We thank you www.MOFAS.org

Make life easier for Teenagers with FASD

Teens with FASD typically look like other teens, because after puberty the facial features of FAS are more difficult to recognize. Their developmental level however may be much younger. They may still need limits and protection like a three-year-old because of their disability in reasoning, judgment and memory. Supervision, protection and extra guidance will be necessary to help them through these difficult years.

Teens with FASD often have ‘Think Ahead’ challenges.

1. They may seek exciting behavior.
2. They may not know the difference between safe and unsafe experiences.
3. They may have a difficult time entertaining themselves.
4. They get into mischief if left alone.

Teen years are a time of challenging and exploring the world.

1. Teens with FASD may be impulsive and lack judgment.
2. Their minds may work at younger developmental levels than other teens.
3. Cannot delay gratification ‘want and do it now.’
4. They may make many mistakes as they enter the adult world of independence, sex, drugs, alcohol, money management, employment, pleasure and anger control.

Middle and high school is a hard time for youth with FASD.

1. Changing classrooms is confusing. The child may need 20 to 30 minutes to adjust. That leaves very little time for class work. Work with your school to see if there is a way for your child to stay in one classroom or attend a smaller school with higher teacher/student ratio. Sometimes an in-school suspension room can help a teen with FASD.
2. The teen with FASD may see the parent’s protection as unfair and mean. They may need 24 hour supervision to keep them safe. Peers and siblings close in age may have more freedoms and opportunities for independence.
3. This may be a time of high emotion for teens, siblings, friends and parent. The teen may recover REALLY quickly from a disagreement as if nothing happened. A parent or friend’s recovery time may be much longer.

A teen with neurological disabilities may

1. Seem to have a genuine innocence about their behavior and responses.
2. Have memory deficits.
   • Remain at basic skills level in math and reading.
   • Forgets things most teens remember: alphabet, months of the year, days of the week.
     • Not be able to process what was asked (not being disobedient)
     • Forgets what she/he said in the last sentence.
3. Impulsive behavior. No common sense.
4. Does things without thinking.
5. May be very verbal.
   • Can “talk the talk” and not “walk the walk”. Check out what teen says.
   • Avoid why. Ask who, what, where, when and how.
6. Mood swings throughout the day may be due to brain injury.
   • Over-reacts to learning new things, change and transition.
7. Says things without thinking.
   • Teen may think by talking and have no internal voice.
   • Says things he/she doesn’t mean to say.
8. Has difficulty separating reality from fantasy. “I had a date with Marilyn Monroe.” Media can become life.

The Minnesota Department of Human Services Guidelines of Care for Children with Special Health Care Needs: Fetal Alcohol Syndrome and Fetal Alcohol Effect recommends families stress the following:

1. Structure – Create a structured environment which includes limited choices. Have clear and set routines. Adjust the environment for slower development and understanding.
2. Supervision – Carefully supervise teens so they do not place themselves in dangerous situations.
3. Simplicity – State instructions briefly and clearly. Use simple directions and orders.
4. Steps – Break tasks down into small steps. Teach each step through repetition. Lists may be helpful. Use rewards as incentives.
5. Setting – Teach desired skills in the way in which they will be used. Teens with FASD may not have the ability to transfer skills from one setting to another.

How you can help your teen cope?

Friends

1. Stay parent active. Get to know your teen’s friends.
   • Offer rides.
   • Counsel.
   • Activities-attend them and get involved with them.
2. Give your teen only as much freedom as can be handled successfully.
3. Teach and re-teach social skills. “Me” centered.
   • Child has a hard time responding appropriately to other people’s feelings, needs and desires.
4. Find teen or young adult group and individual activities your teen can participate in and be accepted: YMCA, YWCA, scouts, choir, church group, band, Big Brother or Big Sister.
5. Designate a mutually agreed upon adult friend or relative who will
   • Be a mentor.
   • Provide activity with teen – hair appointment, concert, zoo, sporting event).
   • Provide a safehouse.
6. Encourage high energy active fun ‘supervised’ activities – skating rinks, biking, roller blading, swinging, diving, swimming.

Family

1. Supervise carefully.
   • Use firm, friendly and fair discipline.
   • Keep firm limits. “Just this once” can erase all previous structure.
   • Don’t let teen wear you down, take a break and do something for yourself.
2. Be supportive of hardships teen faces.
   • Realize how hard teen works to appear ‘normal’ and ‘fit in’.
3. Make sure teen knows what you have asked them to do if your request is ignored.
4. Monitor teen’s money.
   • Realize that $5.00 for a piece of gum or $5.00 for a CD player may be equal to the teen (Esp. with an FASD child).
5. Immediate rewards are often expected.
   • Decide on rewards you can provide without anger or breaking your own pocket book.
   • Emotional rewards work well – smile, hugs, pat on the back, high five.
6. Recognize the signs that your child is heading for trouble.
   • Step in before it happens.
   • Consider ‘controlled failure’ (see your case manager for ideas).
   • Step in to help child deal with consequences right away.
7. Walk away from tantrums.
   • Do not engage. It will go on and on and on.
   • Realize that they often say words they do not mean to say.

Emotions

1. Practice acceptable ways of dealing with feelings.
   • Provide safe place and ways a child can express anger, sadness, hurt.
   • Teach different emotions and how to handle them.
   • Consider video taping behavior so teen can watch.
   • Let teen know when words they use are hurtful or mean.
2. Watch for
   • Depression (suicide risk).
   • Anger (potential violence).
   • Sensual (exploitation, perpetration).
3. Provide mental health care intervention or other living arrangements if needed.
   • A group home for a child with disabilities does not mean failure of your parenting.

Mistaken behaviors

1. Check what teen is saying. They tend to be very verbal and talk a lot and may appear brighter than they really are.
2. Have teen ‘return’ anything they ‘find’.
   • Have teen face ‘victim’ of stolen goods.
3. If teen does not comply with a request, teen may not have processed it. Make sure teen understands what you have asked.
4. Encourage teen to maintain control.
   • Learn signs of your teen getting out of control.
   • Teach teen to read these signs.
   • Provide hand gestures to alert teen when things may be getting out of control.

School

1. Stay connected with the school.
2. Monitor the IEP.
3. Advocate for your teen and teach teen advocacy skills.
4. Monitor a transition plan to adulthood.