Lessons

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Lessons 

Pathways to Success

by HaysKids

 

 

Teaching

Pathways to Success

by HaysKids

 

 

1-Intro

This teaching is about preparing individuals, their families and caregivers of those with Fetal Alcohol, for adulthood.  It is a companion to our first teaching, Pathways to Understanding.

 

Fetal Alcohol is non-progressive organic brain damage.  Most persons with it 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. As a person gets older, the structure naturally becomes less, plus the person is dealing with more adult type issues. They are dealing with harder issues like their sexuality, whether or not to drink or do street drugs, relationships, and tougher subjects in school.

 

I am going to talk to you about some problems persons with fetal alcohol sometimes have. I am not doing this to scare you, or to discourage you, but to help you to understand what they are up against.  The goal of teaching is prevention of secondary disabilities.

 

·         90% have mental health problems.

·         80% cannot keep a job. 

·         80% need assisted living.

·         Over 70%  will have to be confined:

o    for alcohol and drug treatment. (They are genetically predisposed.)

o   for mental health reasons

o   The number one reason is crime.  (Not because they are bad, but because they often do not learn from their mistakes. They are vulnerable and make poor choices. The worst choice, usually, being who their friends are.) 

·         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 Fetal Alcohol can both live on their own independently and keep a job.

 

Most young adults with Fetal Alcohol never think these things could happen to them. They often don’t think they have a problem. Try to make a deal with the person. If they find themselves having these problems, are self injurious, in trouble with the law, have an alcohol or drug problem, or living on streets, that they will seek help. 

 

They need to recognize that they have Fetal Alcohol. If a person will not recognize that they have a problem, then they will blame others for their deficits and cannot find strategies and services to help them.

 

Teach them about Fetal Alcohol as you would someone with diabetes about their disease. 

 

It really helps if you can get them to accept help; stay connected, and be nice. 

 

The longer I live and work with those with Fetal Alcohol the more I’ve come to understand that we have to look at Fetal Alcohol through different eyes.  We need to not only try to understand their disability with our minds but with our heart also. Sometimes the things they do simply do not make sense. I try not to judge their heart, but to just deal with their actions.  I really try to be calm, otherwise it makes things worst.

 

Parenting kids with Fetal Alcohol can be extremely difficult.  Traditional parenting techniques usually do not work. It is very hard not to judge behaviors based on the fact that sometimes they appear to be able to know the difference between right and wrong.  For some with Fetal Alcohol, one minute they can be doing something well and then the next minute they are totally unreasonable and cannot function.  At that point, we judge them as doing it on purpose, and sometimes it is.  What we need to do is try to figure out what triggered the behavior.  Then we need to see if we can change the environment around them.  Often giving them consequences does not work.  If you try giving them harder consequences, thinking that will get through to them, it may work temporarily but usually not.  Often, parents get mad or at least frustrated at their child and let their child know it.  This does not help either.  It only serves to put a wedge in your relationship; it may drive them away or cause them to do something stupid.  It does not feel good to your heart nor theirs. The purpose of a consequence is to change their behavior, not to get them.

 

When I try to explain something to one young adult that I work with, sometimes they get it and sometimes they don’t.  It does not seem to matter how calm I am..  If I’m hyper at the time or if I appear upset, they usually don’t understand.  Sometimes, they understand later after they have had time to process what I said.

 

It really helps if persons with Fetal Alcohol have people around them who understand their disability. they can live a productive life, If they are protected and loved, taught life skills, including how to work, and encouraged to have a developmental growth spurt. Everyone realizes that for some it may never come. 

I feel that realistic hope is often understanding, grace, forgiveness, and love.

 

2-Characteristics

 

I’m going to list some of most common characteristics of teens moving into adulthood with Fetal Alcohol.  This is by no means a complete list and not everyone with Fetal Alcohol has all of these and the severity will vary greatly.

·         Impulsiveness

·         Lack of self-control

·         Not learning from their mistakes

·         A single consequence doesn’t usually change their behavior

·         Knowing the right answer but doing the wrong

·         Confusion/unreasonableness

·         Choosing unhealthy friends

·         Trouble with those in authority/with the law

·         Risky behaviors, both sexual and illegal

·         Running away

·         Self injuries or even attempted suicide

·         Stealing

·         Appears not have a conscious.  I’ve always refused to put this on the list, but what I have come to understand is that like so many of these it is sometimes an issue.  As they get nervous, more confusion sets in and their brain shuts down more.  Sometimes they seem to not even care what they have done, and then later they will appear to care.

·         Slow processing, which means it sometimes takes them longer to understand what was said and longer to come up with an answer. Sometimes they never get it.

·         Return to old problems when they are an adolescent

·         Unable to communicate

·         As they are getting older there is often a lack of incentive, a lack of drive

·         Negativity

·         They often deny that they have a disability

·         They also often have even stronger feelings of “I don’t need help”

·         Drinking/ street drugs

·         Academic problems. They often can read at grade level but not comprehend. Math is often a problem, as is abstract thinking

·         Unstable, emotional and behavioral ups and downs

·         Can’t keep a job

·         Being at odds with parents and others in authority

·         Frustrated parents

 

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 do get married and have children. As long as the mother does not drink while she is pregnant, her child will not have Fetal Alcohol.  It is important that as a couple they decide not to drink at all.  Persons with fetal alcohol are more likely to become alcoholics.   They should encourage each other to do well. They should pledge to each other not to drink.  So please, do everything you can to convince them not to drink,

 

 

Try to teach them self control

 

 

3-Adolescence

 

Adolescence is a hard time for almost every person.  They’re making so many physical and mental changes at that time.  Their brain is still changing and may well be until their mid-twenties or later.  They sometimes feel confused and angry, and their hormones are raging throughout their body.  Part of them is an adult, but another part of them is a child.  They often think they know everything, that their parents and teachers are the dumbest people in the world, and that most adults are stupid.  They just want adults to leave them alone.  This time is even made more confusing and complicated if a person has Fetal Alcohol.  Often the developmental gap gets wider.  At a time when kids want more freedom, most young adults who have Fetal Alcohol need more structure and more protection. 

 

Boys who are normally easy going often show signs of anger and physical aggression during this time.  Kids often want to just leave home to get away from their stupid parents, get away from school, and get away from everybody who is bugging them. 

 

They need extra protection at this time.  They also need extra love, and extra grace.  At times, I just let things that they do go or I will gently bring it up later.  They need the protection, and they need to know that some of their strange behaviors are just part of adolescence.  They need to be taught to say, “I’m sorry,” and to ask for forgiveness.   They need to be taught to be nice.  You need to realize, someday they will probably grow out of adolescence, but it probably will take longer. 

 

·         Many times I’ve heard adults say, “You should of seen what I did”, “this is just normal teen age behaviors.” The difference is the percentages we talked about earlier.  Our children are so much more vulnerable.

·         Normal teen stuff

o   Doing things which they know is wrong.

o   Rebelling against values of their parents and the establishment

o   Unreasonableness and confusion

o   Having Friends the parents do not approve of

o   Possibly drinking, drugs, sex, and trouble with the law

 

 

What is the difference between normal adolescent behavior and Fetal Alcohol adolescent behavior?

·         lasts longer

·         developmental gap becoming larger,

·         developmentally standing still or going backwards

·         “I don’t have a problem you do”, “you made up the term Fetal Alcohol”

 

Teens need structure and boundaries, this helps them to develop. 

 

David Walsh, a brain researcher has written 2 books, “Why Do They Act That Way?” and “NO”   He explains about 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.”

 

Often times for myself, and for many parents that I know, you want to just say, “Oh, forget it,” and leave them alone during this time. It’s not the right answer.  They do need help; they need to keep communicating, stay connected.  They need structure, and to learn about adolescence.

 

 

Many times during this period, I’ve seen major behavioral problems returns. Problems which the parent thought they had worked through.  Only now the adolescent has more abilities to make it even worse.

Hang in there, this time period will come to an end.

 

 

4- Developmental growth spurt and brain health

 I’d like to talk about developmental growth spurts.  A developmental growth spurt is when a person is able to do things that they had not been able to do before.  I’ve talked to several families where their child in their late twenties to mid-thirties All of the sudden, they were able to do things that they were never able to do before. Living on their own, keeping a job, getting a driver’s license, making decisions that keep them out of jail are all examples of Developmental Growth Spurts.  Realizing that they have a problem might mean that they will accept help. It doesn’t mean that the person is healed and able to do everything, but they are able to do more things.  So, just because a person is not able to do something that they really want to do now, it doesn’t mean that they will not be able to do it later.

 

“Story of carpenter”

 

“Brain Health”

If you were trying to get into better physical shape you would eat properly, you would exercise, and you would get plenty of sleep.  Doing these things may also help a person have a developmental growth spurt. 

·         Eat healthy foods.  Limit the amount of sugar and junk foods they eat. Drink water, not sodas and sugary drinks.  Stay away from artificial sweeteners, caffeine, artificial colorings and dyes.

·         Get plenty of exercise.

·         Get plenty of sleep.

·         Practice good hygiene. Which includes:

o   Cleanliness

o   Hair style

o   And appearance – what you wear

·         Do not drink any alcohol, and do not take street drugs

·         Do not smoke

·         Read books

·         Beware of the way you talk

·         Healthy safe forms of recreation

·         Fight against negativity

·         Do not swear

·         Deal with anger

·         Structure

·         Organized room and life

 

A person needs 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 and healthy forms of recreation. For example: crafts, doing art, helping people, being involved in sports, church activities, and the YMCA. Do something healthy and be a hard worker. A person with Fetal Alcohol needs to be around people who care about them.  They need to be around people who are also doing good in their lives.

 

I’m going to give an example of the reverse of brain health, of going downhill.  I received a phone call from a mother one day whose son was thirty.  He was diagnosed with Fetal Alcohol.  He had been doing well.  He had a job, he had met someone very special to him, and they planned on getting married.  He was happy, life was finally going well.  Then he got introduced to alcohol, and he started drinking a lot.  He started missing work, and his girlfriend told him that she did not want to live that way, that he needed to stop drinking, or she was leaving him.  He told his mother, you know if she really loved me, she’d stay with me regardless of my drinking.  His mother told him, if he really loved her, he would stop drinking.  The price this young man was paying for drinking is far too high.  He was going to have a wife, he was going to live a good life, and he was giving it up for alcohol.  That is really a shame.

 

In the workbook (www.hayskids.org), there is a copy of a letter from Ann Streissguth that has some really good advice for healthy lifestyles. Everyone should read it.

 

 

So let’s encourage people to make life choices that will help their brains. It could help them have developmental growth spurts so they can do more.

 

5-What to do “Pathways to Success”

1st: Get a Diagnosis.  If they do not have a diagnosis, try to get one.  It is never too late.  It can help you to understand them.  It can also help the person with fetal alcohol to understand themselves and their actions.

 

2nd: Get services.  Children’s or adult mental health services, the DD services through Human Services, and Social Security.  If they are still in school, you can get services through it. Call the County Health Department and see if they know of services.

            Why:

            It might help make their life and yours better

            Create a paper trail

It might help keep them out of jail

We will talk more about services later.

 

3rd: Learn parenting techniques specific to Fetal Alcohol. That is what our first DVD was about. Even if you think you know a lot about Fetal Alcohol, you need to learn more. You need to learn what this teaching says. You need to continue learning in order to help your child. You need to study from different teachers.

 

You also need to learn about other diagnosis that they have.  Diagnoses such as: RAD, Autism (PDD, Asbergers), ADHD, etc.

 

4th: Talk about the really tough subjects.  Do realistic life planning and set realistic goals.  Then add normal life skills teaching, teachings based on their goals, and have a to-do list.  (We are going to do sections on this later). 

 

5th: Try to convince them to stay connected and to accept help.  Staying connected means keeping in touch with you, keeping in touch with someone who cares about them, or someone who has been there for them.  That person could be a caseworker or a relative, but it needs to be someone who you trust also.   Oftentimes, at this point, they do not want help. When they have a bad attitude, won’t listen for corrections, they are not staying connected, I point it out.  They do not think they need help, so this is a real challenge.  But if you can convince them to stay connected and to accept help, their chances of living a good life and staying out of trouble are far greater. 

 

We really hit this hard – If we are teaching them something or correcting them and they show us with words or with actions  ….I remind them that they are not staying connected or accepting help or being nice.

 

6th:  Train them to be nice and you be nice to them.  Even if all else fails being nice will help them have a better life, it may help them to survive.  If a person is being nice, showing that they want to do well, even if they are having trouble at work, at school, in relationships, in jail, wherever, there is a better chance someone will want to help them. 

 

 

One key in teaching them to being nice is to get them to recognize there is a problem. All too often they think:

         It is someone else’s fault   

         I don’t have a problem

         I will be fine as soon as I leave home

 

Be nice to them.  Show them love, kindness, and grace.  Advocate for them.  Keep communicating with them.  Apologize to them.  Be calm.  Truly show you care.  This will help them to want to stay connected to you and to accept your help.

 

Be calm.

·         The less said and calmer it is said, the more effective it is.

·         You being upset feeds their RAD. It makes them anxious, and the brain shuts down even more

·         Better for your relationship and better for you

 

7th:  Be painfully honest with them about their socially unacceptable behaviors and their disability.  For the most part as parents we want to give good gifts to our children; as parents we do not want to say no to our children’s dreams or desires.  It hurts us to see our children getting into trouble, and not being able to do things they want to do, not being able to do things that others their age are doing.  It scares us to think about our children’s future.  We want the best for our kids, young adults, and grown children.  We must try to convince them to not do things that they are not developmentally ready to do.  At the same time we need to give them hope that someday they may be able to accomplish things that they want to do, and that they need to wait for their developmental growth spurt. 

 

8th: If it is at all possible as they get older, put together a team of people to help them.  The team could be made up of people from the following areas: 

·         Family

·         Education

·         Mental health

·         Social services

·         Medical

·         Fetal Alcohol advocate

·         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 sibling

·         Others

Benefits of a team approach:

·         Sometimes it takes the blame off the parents

·         Buys time

·         More input

 

 

9th. Teach them about Fetal Alcohol.  Teach the person with Fetal Alcohol about their disease.  Just as you would teach someone with diabetes about their disease; you would teach them what they should and should not eat, to get exercise, about their medication, and how their life will be different because of their disease. Do this also for a person with fetal alcohol and it will help them.  This is why I wrote the E-workbook.

 

10th Encourage and help them to do things that will help them have a developmental growth spurt.

 

11th Make a deal

·         Get you talking about alcohol, drugs, sex, jail, types of friends, Fetal Alcohol

·         Might help with court

·         Why do they think they can beat the percentages

Kid I made a deal with.

 

 

6-School

School is where many kids start getting into trouble. Some examples

areas they get into trouble are: 

o        friends

o        Their developmental gap

o        academic and/or social problems

o        school more abstract and less concrete

o        being the trouble maker is kind of cool. Being stupid is not ok

o        have knowledge one day and then not the next – “I know they know it      they knew it yesterday”

 

A Mother said, “I do not know how my son does it – going there day after day, I could not do it.” (social, behavioral, and academic problems)

 

As a parent we need to:

·         Understand their vulnerability and confusion

·         Communicate with the school

·         Use a team approach

·         Be humble

·         Advocate for our child

 

Some of the characteristics of an ideal school would include:

·         Staff that understands Fetal Alcohol and who receive training from several different people

·         Staff that communicates with the parents

·         A team approach to helping the student

·         Hands on teaching

·         Teaches life skills

·         Has concrete teaching and not abstract. Be willing to change our children’s curriculum

·         Be sensitive to the students’ academic needs

·         Protecting the student with Fetal Alcohol from other students and protecting other students from the student with Fetal Alcohol

·         Teaches drive and positive attitude 

·         The IEP process should be a team effort, bringing in others, such as: PACER, the disability law centers, and people to advocate, to come together and help set up a program

·         Teaches them about Fetal Alcohol

·         Have a counselor who will talk to the student about the tough subjects, but they must understand what the parents stand on these issues

·         Teaches socially acceptable behaviors

·         Teaches them how to work, which would include:

o    positive attitude

o   motivation

o   proper behaviors

·         Understand and teach about the developmental growth spurts

·         Teaches to be nice, stay connected, and to accept help

·         Relevant education

·         Be willing to learn and to make changes

·         Be willing to teach and put into practice “Pathways to Success”

 

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

 

“I had a mother tell me that after her son turned 18 he kicked her off his IEP team.  He did not like her negativity.  She kept saying things like, “He will not be able to emotionally or behaviorally handle college without supervision.”  So the team set him up and he was not able to do the work.  The son went downhill drastically and ended up living on the streets.”

 

“I used to have an argument with a mother who wanted to send her daughter to college. I agreed with her that her daughter could academically do the work, but the she wasn’t developmentally ready. She couldn’t even go to Wal Mart without getting caught shoplifting. The mother would argue that her daughter was smart enough. Sometimes I wish I was wrong.”

 

7-Services, resources, counseling

Families often get services because of a referral from their school or from their doctor. Additional ways of getting services is by calling your county Department of Human Services and ask for an intake worker. They will normally then direct you to Children’s Mental Health, to DD (Developmental Disabilities) or to the County Public Health Nurse.


It is much easier to get services if the person has an IQ of 70 or below, which classifies them as mentally retarded. But even though Fetal Alcohol is the leading cause of mental retardation in our country, only 6% of those diagnosed with Fetal Alcohol are classified as being mentally retarded. 

If there were a functioning IQ test many would score 70 or below.

This whole process of receiving services can be exhaustive. You may have to educate your service provider about Fetal Alcohol. Most providers care, they want to help, it is just sometimes their training or lack of training gets in their way.

Overall, I am glad that we have services; it has improved the quality of life of our children and ourselves.


We have learned to advocate for our children, to shop around for a provider, to say no at times, to be honest with and in some cases, teach them more about Fetal Alcohol. We try hard not to insult or burn bridges.

You may end up with some service providers that you never wanted or asked for. Such as an investigator, parole officer, an attorney, sex offender counselor, alcohol or drug abuse counselor, or a jailer. I hate to say it but you must understand that there is a real possibility of this.

You may end up with some service providers that you never wanted to, because your child did something that was wrong. Investigators, parole officers, attorneys, sex offender counselors, alcohol or drug abuse counselors, and a jailer are some professionals you may have to work with. Working with these professionals could be trying at times, but an experience that makes you feel that you are on the same team. Sometimes the system can be harsh, can blame you, and can be a horrible experience. One of the problems is there are often no easy answers. I have talked to many parents who were frustrated at the system because it did not have an answer that they liked, but in talking to parents, they did not have any feasible answers either.

 

Services can not only help the person with Fetal Alcohol but they also create a paper trail which can be very important for helping the person later, for getting services such as Social Security or when going before a judge.

Sometimes it matters as to which county you live in as to the availability of services.

Most common used services providers:

·         Schools

·         Social Security

·         Social Services at county

·         Developmental Disabilities Services at the Department of Human Services

·         Federal Waivers Program

·         County Health Department

·         Mental health, both children’s mental health and adult mental health

·         Therapist

·         Diagnostic centers

·         Medical Assistance

·         Adoption Assistance (in some cases can keep going until they are 22, even if they have graduated from high school)

·         Legal aid

·         Adult Fetal Alcohol assisted living centers

·         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

 

There are many more services available, some of which you are going to have to find.  You’re going to have to talk to people, and you’re going to have to let your needs be known. All of these services will not help if the person will not use them, if they will not stay connected and if they will not accept help. Sometimes, if they are count ordered, it can help.

 

 

Another service is support groups.  They are a good place to learn from other parents and professionals, a place to find out about services, and a place where you can realize your child’s behaviors are common for a person with Fetal Alcohol, also, a place where you can laugh and cry together. 

 

 

Resources

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. And of course, you can go online and look up “HaysKids,” our organization, www.hayskids.org.

Books can be a resource also.

 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 worse.  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 that the counselor did not understand Fetal Alcohol.

 

New methods

If a counselor would not only listen but teach and do the workbook, “Pathways to Success, A Fetal Alcohol Workbook” (www.hayskids.org). It could help. Persons with Fetal Alcohol need to hear it from someone besides their parents

 

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 giving the parents too much to do.  They need to understand the parent’s values and be willing to work with them.

 

A counselor can be an important part of the team. They can really help you get services, and they could help if you have to go to court.  So, try to find a counselor who meets these criteria.

 

 

8-Criminal Justice System

·         There are no easy answers. It is not a system problem; it is an organic brain damage problem. I’m not saying the system is always fair or right.

·         As parents, we have a fear of our child hurting someone or being hurt

·         Jail very seldom helps, often do not learn from their mistakes, but it does protect the society

·         Parents whining

·         Don’t ask for leniency, or make excuses; ask for help and have a plan. Ideally, you can say the child made a deal. An example of making a deal would be to put your child on house arrest with strict guidelines, and you would promise to turn your child in. Have a plan in place. It can help if you show that you are using services.

·         Remember over 70% will be confined, jail being the largest %

·         teach them how to act in jail

·         There will more than likely be false accusations brought against you

·         Don’t let your child get away with hurting you or others

·         Remember that your kid is vulnerable

·         Secure Assisted living centers get them when they are older

·         Teach them about guardianship

Guardianship is a hot subject.  If you bring up that subject you may well have a fight on your hands.  So many times, I hear parents tell me that their kids say, “Well, as soon as I’m 18, I’m out of here, and I’ll be fine.”  It’s as if they think they will be healed.

 

Explain to them about a guardianship.  Explain to them that it is not a life sentence, and that it can be item specific.  Tell them that once they demonstrate that they can take care of themselves that you will go to court and ask that the guardianship be withdrawn.  It can be a really good thing, and help a person get services.

 

Persons with guardianship should not get discouraged, they should realize that some individuals with fetal alcohol have developmental growth spurts, and that they’re able then to do things that they could never do on their own before.  So, they need to be patient, they need to work on life skills.  They need to do the things that they can do to help themselves have developmental growth spurts.  They need to be nice.

 

·         Hostile take over

·         Services often don’t work if the person will not accept help. Sometimes if they are court ordered it will help

·         story about 18 year old kid who meet biological family

 

 

9-Tough Subjects, Life planning, Teaching Life Skills, Goal Setting, and To-Do lists

 

Next we are going to talk about the relationship between tough subjects, life planning and teaching life skills which include goals and to-do list. 

 

You need to talk about the tough subjects.  This is extremely important. These are subjects parents don’t want to talk about.  They know if they do their kids are going to get upset if you don’t talk about them, they’re going to naturally surface.   For example, it is much better to talk with a person in advance about driving, rather than when they come to you, and they’re almost sixteen.  

 

Start preparing them, so that you don’t just spring things on them.  Often time’s parents think, “Well, if I don’t talk about it, then we’ll just cross this bridge when the time comes.”  No, let’s cross it now.  Let’s start talking about, and then let’s talk about it again every once in a while through the years, so that you’ve prepared them and give them hope.  Teach them about developmental growth spurts.  Teach them that may not be able to get a license when they are sixteen, but maybe later.  Teach them it is important to wait until they are developmentally ready. 

 

I’m going to list some really tough subjects you need to talk to them about.  Then do life planning and then life skills training on each of these subjects.   Let’s prepare them for each of these areas:

·         What do they plan to do when they turn 18

o   If they do not have the lie skills to be on their own, see if they will wait until they do.

o   See if they will accept help, even after they leave home

·         Where they are going to live

o   Living totally independently, which 20% can, if their goal is to live independently they are going to have to work that much harder 

o   Living with assistance, and what that level of assistance will be. The level will depend upon their  needs

o   Living at home

o   Living in an assisted living center

o   For far too many, you need to prepare them for living in a jail

·         Medical care

o   Medical Card

·         Driving

·         Education

·         Relationships

·         Vulnerability

·         How they will dress

·         Communications

·         Marriage

·         Sexuality

·         Having a baby

·         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, through a youth group, or an adult group.  It could be going to church or sports.  Talk about different forms of recreation.

·         Guardianship or conservatory.

·         Make a deal with them. Will they accept help, stay connected, and be nice?

·         Other subjects that come to mind that you really don’t want to talk to them about.

 

 

 

Then you need to do life planning; it needs to be realistic.  It needs to cover the tough subjects.  Life Planning helps the person come up with realistic plans and it can take a lot of pressure off of the parents.  Plus, you get to know what they are thinking.

 

It can be extremely difficult.  One of the things that I really disliked was saying no to my kids.  They’d say, “Well, I want to get my driver’s license,” and I’d say, “No.”   What I’ve learned is not to say no.  What I’ve learned to do instead is when they come to me and tell me they want to get a driver’s license, instead of saying no we look at life planning and see how it fits in.

 

 Then they would ask, “What do you think I need to do in order to accomplish my goal?”  It may be getting over anger; it may be learning to communicate better.  It may be to be more mature, and when I think about some of our children, I think about their maturity level, and I go, “No way, they can’t drive!”  But, if they can raise themselves academically, make enough money to buy a car and maintain it and pay for insurance, then they are improving themselves, and maybe can drive.

 

We also look at life planning in terms of where they are going to live.  We look at it for education, and we look at it for all those hard subjects that we talked about earlier.

 

When starting life planning, go slow. Throw out the idea and then give them some time to think about what they would like to do.  Meet with them regularly about their goals.  Use life planning goals and to-do lists when deciding what life skills to teach.

 

Sometimes their ideas are not feasible.  One parent told me they overheard their 16 year old son tell a friend that as soon as he were 18 he was moving out and that he was going to go back to public school and start over again in the 3rd. grade.

 

It is not uncommon for boys to want to go out into the woods, build a log cabin, and just live.  When I was told that, I said, “Let’s do a life plan on it.”  They had to answer such tough questions like: what woods, what does it cost to build a cabin, where will the money come from, are you going to pay taxes on the land, how are you going to heat your cabin, what are you going to eat, how are you going to preserve the meat, etc.

 

When doing life planning it can create a special time between you and your child.  With that said, I can only imagine what it will be like in some circumstances.  The earlier you start this process in your child’s life, the more you will have a trusting good relationship, and the better chance of success. 

 

Life planning is definitely a subject that you need to look at, and you need to do something about.  It is extremely important, and it can help you and they stay connected. Use answers from tough subjects and start exploring with them what they want to do in life.

 

Life Skills

You need to sit down and think about the daily life skills, and what you do throughout your day, and then teach them to function in everyday life.  I know as a parent, at times I just want to just say, “Oh, forget it, I’ll just take care of this myself.”  It’s not the answer.  The answer is to teach them.  Sometimes it is a battle, but you need to teach them to do things. Things such as: dishes, day after day, 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.

 

Teaching them to work has got to be one of the most important skills you can teach. Teach them to try and have a good attitude. Also try to teach them to be nice.  Being nice covers a multitude of problems.  If you have problems at work, if you’re really nice to people, they’ll want to help you.  They’ll want to be able to overcome those problems with you, and work around those problems. 

 

Teach them to be positive, and teach them to have drive. Keep bringing up those words, you point out when they’re negative, and point out when they’re being positive. Set up a system to teach drive.  To-do lists might be the best way to do this.

 

At the job interview the potential boss should be told that they have Fetal Alcohol then the boss should understand. If they’ll hire them, they’ll be more willing to help them.  Some people say you shouldn’t tell that if they tell then they won’t get the job. If they get the job, then they need to learn the skills to keep the job.  If they have problems with showing up on time, not staying on task, getting along with their peers, then those things are going to surface.  Yes, they may have been able to talk their way into the job, but they’ll lose the job. If the boss knows in advance, and if you’re working with this person, then they’ll be more willing. I think it’s good to be up front. For some individuals with Fetal Alcohol, they need a job coach, someone to be right there with them, at the work site in some cases.  In other cases, someone that’s going to help them get up.  Someone that the boss knows they can call if there’s a problem, and that there’ll be somebody else in there advocating for them. 

 

They need to develop safe and healthy forms of recreation.  That is a life skill.  They need to learn to communicate effectively, and in a healthy manner.  I work with a child who cries and throws fits when she doesn’t get her way.  I tell her that when she acts that way it only shows her parents and us that she needs more help and that we cannot let her have her way.  She needs to learn to say what she wants and accept our decisions.

 

They need to learn to set goals. (See our system in the Fetal Alcohol Workbook)

Long term goals – short term goals – to-do lists, become an external brain drive

 

Remember, persons with Fetal Alcohol often have problems with money management. I know of several cases where, even though the person is able to keep a job and live fairly independently, someone else manages their money for them and gives them spending money.

 

Let’s prepare them for their future. Let’s help them learn to have a good attitude, to work, and be nice.  Teach them life skills daily, from the time they get up, till the time they go to bed and that should include recreation.

 

Now it is up to them, they have their goal list and their to-do lists. 

 

10-Best practices

·         Remember that it is organic brain damage and do not take things personal

·         Be calm. The less said and the gentler it is said, the more effective it is

·         Level system (see Workbook)

·         Cognitive thinking program (see Workbook)

·         Do reruns – do bad situation over again, correctly

·         Talk about them in front of them, and they are not allowed to defend themselves

·         Be honest about their socially unacceptable behaviors

·         Teach them forgiveness

·         Build a relationship with them

·         Teach them to have safe forms of recreation

·         Have To-do lists

·         Stay connected, accept help, and be nice

·         Chores

·         Kitchen duty

·         Teach life skills

·         How to work

·         Value system

·         Willing to change what we do and try new things

·         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. In some cases, door alarms really help; it helps them have self control.

 

Sexual safety is a must. 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, and their diagnosis, at the end of the day, you have to protect them from society and society from them.

 

11-Conclusion

 

Remaining calm is extremely important.  Keep them on your team and you stay on their team.  Teach them to be nice, and you be nice to them.  You have to try to convince them to stay connected and accept help.  You, case workers, the schools, everyone involved need 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 and as they learn self control.

 

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 them diagnosed as early as possible, and then teach them about fetal alcohol.  Prepare them mentally and emotionally that their life may be different.  At sixteen they probably will not be able to get a driver’s license, but maybe later.”  Part of that “maybe” will depend upon them being patient, upon them not drinking and doing drugs, and on them not being in jail.  Such high percentages of those 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 with them. Don’t take their behaviors and confusion personal, blame yourself, or become bitter.  You need to forgive and teach them to forgive also.

 

Set realistic goals. Work on developing their life skills. Teach them to use do-to lists. 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.  The reason I have written a workbook is to help them to understand their disability and to teach them tools to deal with it.

 

Remember about developmental growth spurts; it gives us hope. I teach that just because you can’t do something now, it does not mean you will not be able to do it later; so let’s work on this skill. Work on building skills, and do not give up.  Developmental growth spurts also gives us, as parents, 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. 

 

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

 

Have realistic expectations of them, and teach them to have realistic expectations of themselves, not to give up, and to go forward.  There are many individuals with fetal alcohol who are living good lives.

 

 

Parents often complain to me about caregivers not understanding that it is organic brain damage.  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, 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.  Sometimes they don’t hear all the words, or they can repeat the words but they don’t understand what it means.  Try to understand their heart, not judge it. Love them, have compassion for them, and understand it is organic brain damage.  That does not means 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, drive, and proper behavior.  The purpose of reward is also to change their behavior.

 

“I am not going to become bitter” story

 

Build a relationship with your kid.

 

Sometimes success is just understanding and love.

 

 

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, “Education” , where 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 also.



 

 

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

 

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

 

 

Please include your phone number.

 

Visit our web site and use our Fetal Alcohol Workbook

 

Thank you

John Hays