Transitions: Pathways To Success

Printable Version

Written Basics

Pathways to Success
It is about preparing individuals with FASD for adulthood. It is a companion to our first teaching, Pathways to Understanding.

The most important things to convince a person with Fetal Alcohol is to be nice, stay connected, and accept help from those who have been there for them. That goes for both the person with FASD and their caregiver need to accept help.
Being the caregiver for someone with FASD can be extremely intense. The following list will help you deal with it.
• Do not take personal their attacks; but examine what they say and see if there is any truth in it. Apologize quickly for anything you did wrong and be extremely calm.
• You need to be less intense.
• Teach them to be nice
• Both you and them need to stay calm
• Have someone you can talk to. Ask your kid if they think what they said is valid and ask if they think it was confusing
• At times, you have to love them at a distance.  At times, you also have to just accept that this is the way they are. You can always hope that they may have a developmental growth spurt and change. Always love them
• Take care of yourself, and if you are married, take care of each other. Not as a selfish thing, but it is necessary for you to be an effective parent. Raising children with FASD can destroy you physically and mentally because of the stress.
• You will feel like a failure at times.
• Realize that no matter what you do many will make very poor choices and will have to be locked up. Don’t take it personal.
FASD is non-progressive organic brain damage. Persons with Fetal Alcohol do not get worse as they get older. However, they may feel like they are, or they may even appear to be. When a person is young, they are told what to do, when to do it, where to do it, how to do it, and whom to do it with. That is an incredible amount of structure. But as a person gets older, the structure naturally becomes less plus the person is dealing with more adult type issues. They are dealing with sexuality; they are dealing with whether they should drink alcohol or do street drugs. They are dealing with relationships. They are dealing with harder issues in school. So at that point, they may actually appear to be getting worse even though they are not.
Not everyone with Fetal Alcohol has all of these, but some of the most common characteristics of teens moving into adulthood with FASD are:
• Impulsiveness
• Lack of self-control
• Not learning from their mistakes
• Confusion/unreasonableness
• Slow processing, which means it sometimes takes them longer to understand what was said and longer to come up with an answer.
• Unable to communicate
• As they are getting older, there is a lack of incentive, lack of drive
• Negativity
• They often deny that they have a disability
• They often have even stronger feelings of “I don’t need help”
• Drinking/drugs
• Choosing unhealthy friends
• Trouble with those in authority/with the law
• Risky behaviors, both sexual and legal
• Academic problems- Often can read at grade level but not comprehend. Math is often a problem, as is abstract thinking
• Running away
• Self injurious behavior or even attempted suicide
• Stealing
• Unstable, emotional and behavioral ups and downs
• Can’t keep a job
• Knows right from wrong, but can’t do it. Might appear to not have a conscious at times
• Totally unreasonable
• Being at odds with parents and others in authority
 
 

 

 

 

They often have very normal desires.

• Desire to marry
• Desire to have children
• To provide for their family
• Their biggest desire is to BE NORMAL
Some individuals with fetal alcohol will have developmental growth spurts in their late 20s to mid 30’s. That means that they can do things that they were not able to do before, such as living more independently, keeping a job, having a relationship, staying out of jail, and realizing they need help.
I am going to talk to you about some problems persons with fetal alcohol sometimes have. I am not doing this to scare you, but to help you to understand what they are up against. The goal of this is prevention.
• 90% have mental health problems.
• 80% cannot keep a job.
• 80% need assisted living.
• 75% of the males and 70% of the females will have to be confined:
      -For alcohol and drug treatment. (They are genetically predisposed.)
      -For mental health reasons
      -For number one, crime. (Not because they are bad, but because they often do not learn from their mistakes, because they are vulnerable and because they make poor choices.)
• 70% will be victims of violence.
• 60% will have problems staying in school.
• Around 50% will have inappropriate sexual behaviors.
• Only 8% of individuals with FASD can both live on their own independently and keep a job.
As a child, most of them never thought these things could ever happen to them. So try to make a deal with the person with fetal alcohol, that if they find themselves having these problems that they will seek help
FORMULA FOR SUCCESS
1st: Get a Diagnosis.
2nd: Get services.
3rd: Learn parenting techniques specific to Fetal Alcohol.
4th: Talk about the really tough subjects. Do realistic life planning and set realistic goals. Then add to normal life skills teaching, teachings based on their goals.
5th: Teach them; try to convince them to stay connected and to accept help.
6th: Train them to be nice.
7th: Be painfully honest with them about their socially unacceptable behaviors and their disability. Put together a team of people to help them. The team could be made up of people from the following areas:
education – mental health – social services – medical – FASD advocate – parent – criminal justice – sports coach – youth leader from an organization such as YMCA, 4H, scouts – youth leader, pastor, or elder from a church – an adult friend – a mature older sibling – relative – Other
PROTECTION
Protection – protection – protection
Protection is one of the most important parenting strategies I know. Protecting them from society and protecting society from them. Using home base and/or a levels system helps protect them. Door alarms can really help, it helps them have self-control.

Sexual safety is a must. If they commit a sexual crime it does not help them. You must try very hard to protect them from others and protect others from them.

A person once told me that “regardless of their horrible childhood, regardless of their diagnosis, that at the end of the day you have to protect them from the society and the society from them.”

ADOLESCENCE – TEENAGERS
I read a book by a gentleman named David Walsh, called, Why Do They Act That Way? He explains how the adolescent brain is not fully developed, and how individuals in adolescence sometimes use a different part of their brain for decision making than they will as an adult. He gives a reason, not an excuse, for their behavior. He also says that structure will help them. He says not to leave them where they’re at, but to help them to get through it. He tells parents to stay connected. He uses the term “don’t give them a divorce.” I know often times for myself, and for many parents that I know, you want to just say, “Oh, forget it,” and just leave them alone during this time. This is not the right answer. They do need help, to keep communicating, and to keep connected. They need structure, and to learn about adolescence.

DEVELOPMENTAL GROWTH SPURTS AND BRAIN HEALTH
Brain Health
• Eat healthy foods. Limit the amount of sugar, white flour, and junk foods they eat. Have them drink water, not sodas and sugary drinks. Keep them away from artificial sweeteners, caffeine, artificial colorings and dyes.
• Make sure they get plenty of exercise and plenty of sleep.
• Have them practice good hygiene including: cleanliness, hair style, and appearance
• Do not let them drink any alcohol, take street drugs, chew or smoke
• Have them read books
• Beware of the way they talk: Fight against negativity. Do not swear. Deal with anger.
You need to be careful of how much time they spend and what type of movies or TV they watch, or electronic games they play. People need to have healthy hobbies. For example: things such as crafts, doing art, helping people, being involved in sports, church activities, and the YMCA. Do something healthy. Teach them to be a hard worker. A person with FASD needs to be around people who care about them. They need to be around people who are also doing good in their lives.

At the same time parents and caregivers need to understand regardless of what they do at times, persons with fetal alcohol may make ridicules choices; it can be a part of their brain damage.

SCHOOL
Some of the characteristics of an ideal school would include:
• Staff that understands FASD and who receive training from several different people
• Staff that communicates with the parents
• A team approach to helping the student
• Teaching life skills
• Concrete learning, not abstract
• Being sensitive to the student’s academic needs
• Protecting the student with FASD from other students and protecting other students from the student with FASD
• Teach drive and positive attitude
• The IEP process should be a team effort, bringing in others, such as PACER, the disability law centers, people to advocate, to come together and help set up a program
• Teaching them about FASD
• Having a counselor who will talk to the student about the tough subjects, but they must understand where the parents stand on these issues
• Socially acceptable behaviors
• How to work
• Learning to work would include:
   -positive attitude
   -motivation
   -proper behaviors
• Understand and teach about the developmental growth spurts
• Teaching them to be nice, stay connected, and accept help

Where ever the person goes to school caregivers and staff should communicate. There should be a team approach to the person’s education.

Relationship between tough subjects, life planning and teaching life skills:

 

 

 

 

 

You need to talk about the tough subjects. Then you need to do life planning around those subjects, and then you need to design their life skills teaching around their life plan.
• What do they plan to do when they turn 18
   -What if they do not have the life skills to do that
   -Will they accept help
• Where a person is going to live
   -Living totally independently, which 20% can
   -Living with assistance, and what that level of assistance will be, the level will depend upon their needs
   -Living at home
   -Living in an assisted living center
   -For far too many, you need to prepare them for living in a jail
• Medical care – Driving – Education – Relationships – Vulnerability – How they will dress – Communications – Marriage – Sexuality – Life skills – Job – Whether or not they’re going to do alcohol and drugs – Money management
• Types of friends

• Recreation: it could be through the YMCA, a youth group, or an adult group. It could be going to church. It could be sports. Talk about different forms of recreation. 

• Guardianship or conservatory

• Other subjects that come to mind that you really don’t want to talk to them about.
If you ask parents what worries or even scare them, the most say “their child growing up.” It is also common to hear parents say, “Their child’s vulnerability about sexuality,” or they will say, “What will happen to their child as they go into their late teens and into their 20’s?”
 

LIFE PLANNING AND GOAL SETTING
These are the steps to life planning and goal setting:
• Meet with them and introduce the idea (theory) of this to them
• Give them some time to think about it (at least a couple of days)
• Meet with them again (start a file or a binder)
• Start writing down ideas
• Make two lists
• One life goal page (big picture – long term goals – you can use items from the tough subjects list. Listen to the person, do not say no. You will tweak them later.)
• One page for immediate goals (desires to do something – behaviors – character changes – etc.)
• Pick out a couple of goals from each list (you will be doing more of them)
• Try hard to make this fun
• Talk about whether goals are realistic
• Keep in mind developmental growth spurts
• Especially with long term goals
• Explore with them whether they are realistic
• See if you can tweak the goals
• Try to make this fun
• when they have reached their saturation point stop and do it again later
• You can always put items on a list to be talked about later
• Do not be pressured into answering questions that you are not comfortable with
• Make sure that you put it on a list to talk about later
• Seek wisdom from others before you answer
• Start making to-do list from their goals
• Try to keep this simple
• Steps involved to reach their goal
• Include: Developmental changes – Skills needed – Behaviors – Changes that they need to make – Educational requirements – Attitude – Finances – Their strong points
• Meet with them on a regular basis
• Check their progress on their to-do list
• This can become a time that you find out what they are thinking
• It can be a special time for the two of you, a time when you work on behaviors, a time when the two of you tweak their goals or their to-do list, a time when you teach them to communicate, a time when you teach them perseverance. It can also be a time when there is extreme frustration, and unfortunately, reason does not always prevail. Be sensitive to them and yourself. Tell them you will meet again, and give both of you some time to think about certain subjects, seek help from others for ideas. Calm down – this can be frustrating for both of you
• When they are doing things which go against their goals list remind them of their goals
• Be patient with both them and yourself; this is a long term process

List of things you need to talk about:
• Sociably unacceptable behaviors – Strong points – Weak points – Where they are going to live – Money management – Life skills – Job – Education – Driving – Relationships – Vulnerability – Types of friends – Sexuality – Marriage – Children
• Communications – Recreation – Jail – Whether or not they’re going to do alcohol and street drugs
Talk about whether they possibly will need a guardianship or conservatory
LIFE SKILLS
Life skills – teach them normal daily life skills. Life skills such as: cooking, having good hygiene, money management, communicating, and being nice. Then you add to that list their personal one from life planning which comes from dealing with the tough subjects. Remember to give them hope.
SERVICES AND RESOURCES
Services providers:
• Schools
• Social Security
• Developmental Disabilities Services at the Department of Human Services
• Mental health: both children’s mental health and adult mental health
• County Health Department
• Medical Assistance
• Adoption Assistance (in some cases can keep going until they are 22, even if they have graduated from school)
• Extended or Post Foster Care programs
• Adult Foster Care
• Jobs training: there are job coaches, services to help you find a job, services to help you keep a job, and special jobs
• Private organizations such as:
  -NACAC. a national adoption organization
  -MNASAP Minnesota Adoption Support and Preservation
  -National, state, and local FASD organizations
  -The ARC
  -Support groups
  -Others
On a national level there is NOFAS, the National Organization on Fetal Alcohol Syndrome. Here in Minnesota, we have MOFAS, Minnesota Organization on Fetal Alcohol Syndrome. It is a state organization with national significance. The ARC is a national and state organization. They also have a local organization in northern Minnesota which does training and advocacy on FASD. For Diagnosis, there is the Fetal Alcohol Diagnostic Program in Duluth or Dr. Chang at the University of Minnesota, in the Twin Cities. There are many other organizations which you can go online and find. Just type in “FASD”, and the numbers that come up are staggering. And of course, you can go online and look up “HaysKids,” our organization, http://www.hayskids.com.
COUNSELING:
When I mention counseling, many parents will often show strong emotions of disgust. Many feel it has simply not worked and often times made things worst. It is good for a person with Fetal Alcohol to have someone to talk to in addition to their parents. All too often, parents have felt the counselor made life harder for their child, and the counselor did not understand FASD.
• When choosing a counselor, interview them first. Find out if they either understand fetal alcohol or if they are willing to learn about it. You need a counselor who will listen to you and not give the parents too much to do.

Some counseling models which have been helpful are:
• Story telling
• Positive self-talk
• Cognitive thinking skills
• Life planning, goal setting
• Talking about the tough subjects
• Helping them deal with the fact that they have abilities and disabilities
• Help them deal with adolescence
• Listening to the client but understanding what they say may not be reality. Knowing when to ask the parent. Knowing when to direct the counseling session.
• Someone who will be respectful of the parent’s values

A counselor can be an important part of the team; they can really help. So, try to find a counselor who meets these criteria.

In conclusion, I’d like to say,

 

 

 

 

 

If you suspect fetal alcohol, and the person does not have a diagnosis, take them in and get one. It can help them understand themselves, their caregivers to understand them, and it can help them receive services.
Remaining calm is extremely important. Keep them on your team stay on their team. Teach them to be nice, and be nice to them. You have to try to convince them to staying connected. You also need to accept help, case workers need to accept help, the school needs to accept help, and everyone involved needs to accept help. It truly needs to be a team approach, and each member of that team needs to listen to the other team members. You also need to explain to the person with Fetal Alcohol that the level of help that they need can change as they are developmentally able to do more on their own.
Take care of yourself, not in a selfish way, but so you can survive. My wife and I strive to have time together and time for ourselves.
Teach them about their disability. As a lady said the other day, “Get your diagnosis as early as possible, and then teach them about fetal alcohol. Prepare them mentally and emotionally that their life may well be different. At sixteen they probably will not be able to get a driver’s license, but maybe later.” Part of that “maybe they will” will depend upon them being patient, and upon them not being in jail. Such high percentages of kids with Fetal Alcohol are really struggling and have gotten involved in alcohol and drugs. We have got to try to help them not to.
Build your relationship, set realistic goals, and work on developing their life skills. Often remind them about developmental growth spurts – it gives them hope; it also gives caregivers hope.
An area that I think we will start hearing more about is helping them deal with the fact that they have a disability. They need to accept it, but at the same time, they need to try to find ways around it. This is such a complicated area.
We all have many disabilities. Our kids – young adults – need to work to find ways to deal with their disabilities. One of the ways around our disabilities is to accept help.

Remember about developmental growth spurts; it gives us hope, and I teach about them. I teach that just because you can’t do something now, that does not mean you will not be able to do it later; but let’s work on this skill.

 

 

 

 

 

So work on building skills, and do not give up. Just because we want to give up and say, “Oh, forget it;” keep on working on them. Developmental growth spurts also gives us, as parents and caregivers, hope. It can also give hope to people who are caregivers. So, hang in there, keep trying and keep plugging away. Yes, it may take longer, but that’s okay. Look how much longer it takes some kids to learn how to read.
Have realistic expectations of them, and teach them to have realistic expectations of themselves. Teach them not to give up, and to go forward. There are many individuals with fetal alcohol who are living good lives.
If you suspect fetal alcohol, and the person does not have a diagnosis, take them in and get one. It can help them understand themselves, it can help their caregivers to understand them, and it can help them get services.
I often talk about people not understanding that it is organic brain damage, and that includes parents and caregivers. Sometimes I truly do not understand. I become frustrated; where if I really understood what was going on, I would have more compassion. So, take the gifts of patience, love, understanding, and compassion and let them enter deeply within your heart. Remind yourself often, “It is organic brain damage.”
Even if they know right from wrong, if in their heart they understand, it does not mean they won’t turn around and do it wrong anyway. It is part of the disability; it is part of their brain damage. So love them, have compassion for them, and understand it is organic brain damage. That does not mean that you should let them get away with wrong behaviors, because letting them get away with things is not the right answer. Remember it is organic brain damage; try hard to find ways around them doing wrong.
We give consequences for the purpose of changing their behavior. We do not give consequences to “get them.” Let’s also give positive consequences, for having the right attitude, having drive, and proper behavior. The purpose of reward is also to change their behavior.

I’ve known many really good parents, who have adopted children, that are struggling, or who have struggled for years and years. For some of them things have gotten better as their child has gotten older, and as their child has had a developmental growth spurt. But, let me warn you and warn them, that if they do enough alcohol and enough drugs, they will not have the developmental growth spurt.

So,
• If they do not have a diagnosis, get a diagnosis
• Get services in place
• Teach them about fetal alcohol
• Do realistic life planning and goal setting
• Convince them to stay connected and to accept help.
• Talk about those hard subjects
• Remember about developmental growth spurts
• Have hope
• Remember it’s organic brain damage
• Educate yourself; learn from more than one source. Different teachers will give you different ideas.
• Become a good advocate
• Teach to them to be nice
• Be nice to them

In order to get the most out of this teaching, we recommend that you go to our web site. There will be a section titled, “Pathways to Success,” you can download this teaching.  It’ll be in written form. Study it; let it enter deep within your hearts; and into the hearts of the other members of the team. Let it enter deep within the heart of the person you are working with.

Our web site is http://www.hayskids.com

If you’d like to contact us, you can contact us at hayskids@hayskids.com