Realize they have organic brain damage. They need your help; you are doing a very hard and important job parenting them.
Remind yourself often they have organic brain damage, that they are not doing things just to drive you crazy or because they are bad. They often don’t learn from their mistakes, they forget the rules, even though you have told them a thousand times, including 2 minutes ago. Have patients.
Think about what they have lived through, (FASD + Reactionary Attachment Disorder + Other Diagnosis = Who They Are) have compassion. They have organic brain damage.
First, understand that normal parenting techniques will not work. Persons with FASD have organic brain damage. The three most common characteristics of persons with FASD are Impulsiveness, Lack of Self Control, and Confusion. Learning parenting techniques specific to it will not only improve their lives but yours also.
I work part time as a Parent Liaison for MNASAP, Minnesota Adoption Support and Preservation. Part of my job is to answer crisis phone calls. Once I had a phone call from a lady who blurted out, “How long does God expect me to do this?” She went on to say that she did not like her adopted child, she did not love him anymore, and did not want to live with him anymore. She just wanted to know how to give him back.
I explained to her that what she was feeling was not uncommon, and what her child needed was: a Correct Diagnosis, Services, and for her to be Calm. What she needed was: Respite, Hope, a Support Group, to be Calm, and Knowledge about FASD and Parenting Techniques specific to it. We then talked for over an hour about Parenting Techniques.
Well two weeks later I called her back and asked how things were going, she said, “Fine.” Then I asked her how her son was doing. She said, “Really Well!” In actuality her son had not changed, she had changed. She understood him better, she had changed her expectations, and she had changed the environment around him. She had become calmer. She had learned some parenting techniques specific to his diagnosis.
Being calm: As one parent/professional once told me, “The less I say and the calmer I say it, the more effective it is.” Not only is this true, but it is unhealthy for your child, and it is unhealthy for you to yell them very often. It creates an emotional gap between both of you. You want them to feel you are on their side. Being calm is more important than almost any issue.
De-escalation: All too often when a person with FASD thinks they are in trouble, their already fragile connectors in their brains go down, at that point all they can do is deny and escalate. Use a time out before you ever talk to them about something that has happened, or present it and say we will talk about this later. This will give them time to calm down and let their brain stabilize. This is important with older kids too. (Kid in prison)
Look at “What Frustrates You.” What are they doing that frustrates you the most, then work on it. Sometimes you have to just accept it. Most of the time you can find a solution if you can remain calm long enough and continue trying different ideas. As long as you are seeking a solution, then there is hope, which is something you need.
On the other hand, if you think they are going to change, then you have a problem. You change their circumstances. You change their environment. Don’t set them up. (Bed wetting)
Telling the truth and not stealing are often very hard issues. They are issues that you need to teach to often. I am not soft on these issues, I am realistic.
You need to understand that because of their FASD confusion, at times, they do not know the truth. I received an E-mail asking if I knew any resources on Lying. In my reply, I asked if the child has FASD. I went on to explain that if they did, sometimes the child is lying to try to keep out of trouble, however sometimes it is a FASD lie, caused by confusion. Sometimes if you give them time to let their brain calm down then they can tell the truth. At times they lye because they think that is what you want them to say, or because they think it will get you off their back. This can be a real problem when dealing with the police.
So, how do you tell the difference between a FASD lie and lying? If they get in more trouble because of the lie, not for lying, but because of the lie then I figure it is because of FASD.
In the FASD world we do not call it stealing, we call it “ownership issues.” It is often because of their impulsiveness that they take things. Often they do not even want what they take. Lock things up, remove the temptation, that protects them. You could say I should not have to lock things up, that’s true, but it is easier to lock up really valuable things. One person asked me what happens when they get older if I have not taught them not to steal. They still need protection when they are older, and it is not as if you will lock up everything, just your most valuable things. I know several parents who keep their bedroom door locked.
Make it a rule they can’t keep found items, that they can’t borrow anything, and they can’t trade things. I know a parent who checks her daughters backpack everyday when she comes home from school. Her child knows she is going to check it and that becomes a way for the daughter to stay honest. (Mother in Target)
Learn to protect your child.
Learn parenting techniques specific to FASD.
I was recently asked to expand on being calm and on de-escalation. I have included it because it is what we do, it is given as examples:
RE: Calm. When you say stay calm what are some of the methods you use
a) average day, just to stay centered…For me personally it starts about 5 with my morning routine. I get up (I feel alert and normally have a sense of well being). I pray, I listen, and then I row on our rowing machine (while listening to books on tape). After that I work on the computer, catching up on my emails, doing HaysKids work or MNASAP work.
During the day if I am home I really try to take 2-4 kids and work on a building project or gardening or crafts. By only having a few kids it is less hectic. That also gives me a feeling of moving forward.
We have PCA’s and they give us a break.
Holiday, my wife, and I try to give each other a break. She does stretching and PT exercises almost every day. She also tries to take some time off to read, to rest, to do art most days. Holiday works outside in her ever growing flower garden regularly.
The kids go up to their rooms a little after 8 most evenings, except “Friday Night.” In their rooms they listen to tapes or music, they read, they play quietly by their selves.
Being calm is a goal of parenting for Holiday and I. It is a plan. The way our school is set up, the way our day is structured, the way we parent is all affected by our desire, need, to have calmness. They need calm also.
When every we see, or hear, things starting to get wild we deal with it immediately.
b) starting to get hectic, beginning to feel overwhelmed. Ask for calm. If that does not work then we redirect the child or children who are causing trouble.
c) feel yourself losing self control and the chaos level is rising. Redirect, redirect, redirect! Put a child or children in time out.
During this stage or the next if Holiday or I hear the other one starting to lose it we go to the problem area immediately. We then gently try to take control. We remind the other one to calm down and to “not pick up the rope.”
d) all out chaos – major stressor — feel completely unglued!!!!! Escort the kid to their room, and turn on their door alarm.
Get some else to handle it and take a break. On one occasion I called up a support person and asked him to come and get a child at 10 o’clock at night. The child stayed there for 3 days.
RE: Deescalate. Very similar to calm, perhaps, but how to deescalate
situations. The first line of defense is prevention. Structure, routine, tight controls, are always we use to prevent de-escalation. This needs to be done with love not harshness. We also explain to them why we have to have such tight controls; it is for their protection. De-escalation is a goal.
a) minor – a few snippy words? Calmly say that is not proper or it is not socially acceptable. Try not to escalate the situation.
b) not so minor. Ask the kid to go to the corner or a chair and to calm down. Then later talk to them about what happened.
c) quite serious. Have them go to their room, at that time we put on their door alarm.
d) bedlam. Restrain the child. I hate this one, I always feel I’ve failed when this happens. It is very rare, very rare. At the same time it can be a very effective therapy tool with a smaller child (up to 9 or so).
Call for back-up.
Get your child diagnosed as early as possible. Find services and advocate for them. This will not only help them, but it will make your life better also.
The earlier the diagnosis the better, 95% are first misdiagnosed as having ADHD. Get as many other diagnoses as possible, so you can learn parenting techniques specific to the diagnosis, also it will help them to be illegible for services both now and later in their life.
It really helped my wife to find out one of our children was functioning at a 4.5 year old level even though he was 12. That meant his behaviors were age equivalent. It meant he was not lying in bed at night trying to think of ways to sabotage the family.
Some people say, “Don’t label my kid.” One person even said to me one time, “Why would I want to get my son diagnosed.” It is better for them to have a FASD label which will help them to get services, than to be labeled a trouble maker, a dropout, a sex offender, a criminal, or even dead.
I remember reading a brochure about an older boy just diagnosed. In the brochure he said he was relieved because now he understood why he had been the way he was, and now maybe he could get help.
Someone asked me if our children knew they had Fetal Alcohol. I said yes. They then asked how old are they when we tell them. Our kids grow up hearing it. I teach them about FASD and how to live their lives how to function with this diagnosis.
It is very hard on a child’s self esteem to always be told no, to always be getting in trouble, to be different. They need to learn how to deal with their FASD.
So, get them diagnosed as early as possible, then use that diagnosis to help them.
Feel good about your parenting. All too often when I say this, parents think, “I’m just trying to survive.” We need to reach beyond surviving so we can feel good on the inside about our parenting. Some days are just hang on days.
Tell your child that you are on their side, and then prove it to them. Tell them that you are not out to get them, but that you are out to teach them. The purpose of consequences is not to get them but to change their behaviors. This will help you to feel good about yourself and about your parenting.
There is a difference between Equality Vs Fairness. Our goal is not to be equal but to be fair. A child with FASD may not be able to ride their bike on the road when another child can, but the child with FASD maybe just told to stop throwing a fit where the other child would have consequences for the same action. Never try to be equal but try to be fair. (An example – meal time)
When you have children living in the home who do not have FASD you need to let them have as normal of a life as possible. You need to let them do age appropriate things.
You need to understand the difference between “Won’t vs. Can’t.” “Can’t” means they either do not have the ability, the drive, or the understanding to do something. “Won’t is defiance.” Keep in mind, knowledge or skills gained one day does not automatically mean they will know it the next. (Going up to bed)(Reading)
As parents we need to make changes, learn parenting techniques, and change our expectations.
We need to strive to feel good about our parenting.
Inspire them to do good. Teach them it’s ok to have FASD; however their life will be different. They will need assistance. For one young man that assistance was a wonderful wife. We all need help in some areas. Tell them they can live a good life; most people with FASD can marry and have children. They can give hope to others, they can show the world they can make it, they can be a good team player, and a good community member.
Teach them the price is too high for them not to do good. (Phone call)
Negativity, point it out, fight it. If you ask them what frustrates them, you will often hear; “I’m bad, I’m stupid, I’m a retard, I lie, I can’t do good, or I steal.” Building their self esteem needs to be one of your goals. Realize they often feel lonely, sad, confused, and they have a higher suicide rate.
To build their self-esteem teach them a skill. Teach them to do something others will recognize and will give them praise and credit for doing. That will give them good honest self-esteem.
Set an example, model for them correct behavior, tell them the right answer. We often assume they know the right answer when often times they don’t. It may seem ridiculous to have to tell a teenager the correct answer when they blow it is to say I’m sorry, but that is often part of their training.
Your actions, the things you do, teaches them. So you need to do good.
Quality of life, both theirs and yours. Not only now but also into their future.
Don’t buy into lies; as parents we are often told their bad behaviors are just “normal kid stuff.” The difference is the frequency upon which the behaviors occur, the intensity of them, the fact that they often do not learn from their mistakes, and that normal parenting techniques will not stop the behavior. Another big difference is 60% are either dead or in prison by the age of 30.
You may be misunderstood by professionals. Some professionals really do not understand FASD and look at the parents as the source of the problem and they think the child is fine. (National speaker shared)
Deal with your feelings of failure as a parent. Forgive yourself. Learn parenting techniques, it will help.
Be emotionally involved with your kids, not their undesirable behaviors.
Don’t remove the services if the child is doing better. They are doing better because of the services.
Protect them and yourself. We now use door alarms. They are a mechanical means to help them have self control, to help them stay in their room. They don’t necessarily like them, but we explain to them they are there to protect them. We are very upfront about them and they have accepted them. They see the alarms help the other children.
For all but one child we only use the alarm when they have been sent to their room for time out, or when both mom and dad are really tired and we just need to know where everone is. For one child we turn it on every night. It is a way to protect him and everyone else. We sleep better knowing we don’t have to be concerned about his getting up and wondering through the house or going into someone’s bedroom at 11 o’clock at night.
We buy them at Radio Shack for around $21. They hang on the outside of the door. Buy the key type not the one with the touch pad.
The door alarms have improved our quality of life.
Make their quality of life and your quality of life one of your goals.
Take care of yourself. Find respite, become part of a support group. Be calm, and learn about FASD and learn about parenting techniques that work. Have hope, for without it life can definitely be overwhelming.
Beware! The divorce rate is higher among adoptive parents than that of the nation. So take special care of each other.
As caregivers we are human too – when we fall apart and blow it, we need to ask forgiveness. It will help your relationship with them. That will not only help them but you also.
Your ex-friends vs. new friends: Often if you adopt or foster a child with FASD many of your old friends fade away. But that’s ok, your new friends will be much better ones, they will be patient and want to understand. (5 year old girl, church)
Tell your child with FASD that they must “Forgive” their biological mother. You have to forgive her also. (We went to prison to visit)
A couple of years ago Holiday and I felt we were we were wearing down physically. We live with a lot of stress. So we started eating better and getting regular exercise. We plan time off for us both individually and as a couple.
Take care of yourselves not as a selfish thing but to make you a better parent.
Protecting them. They often need protection from the society and from themselves and the society often needs protection from them. As they get older, protecting them not only becomes more important but it is more difficult to do. They need even more external structures and controls.
You need to be a control freak. You will be judged for being too hard on the kid, and then when the kid blows it, it is your fault because you didn’t have control over them. It is as if you can’t win. Being a control freak does protect them, therefore you do win and so does your child.
As our children are getting older we are locking more and more things up. This is to protect them from getting into trouble or from breaking, stealing, or ruining things. We now use door alarms on our kids bedroom doors, it is a mechanical means to give them self control.
If they can’t deal with 6 year old issues then how are they going to deal with teen and then adult issues? Our children are not getting worse as they are getting older, they are dealing with more complicated issues and they do not have the skills to handle them. Keep this in mind when making their “Life Plan.” (Calamine Lotion)(I’m cold)
Teach them to trust you and the people you say to trust.
Because they can understand the words it does not mean they understand the meaning. For example, you tell them, “Don’t talk to strangers.” So you go to the park and your child brings Jane, an adult up to meet you. You ask your child what the rule is, they will say not to talk to strangers. Then they go to explain that Jane is not a stranger because they know Jane’s name. Just because they understand the words does not mean they understand the meaning. Ask them to tell you the meaning of what you said not to repeat the words.
Notify the police that you have a child at risk. Teach the police about de-escalation. Make them want to stay home as a young adult, or at least stay connected. You do this by being nice to them and by making them feel that you really are on their side. The truth is you want them to stay home because 60% are either dead or incarcerated by the age of 30. Even if they are not, chances are overwhelmingly high that their life will be a disaster.
Families that are doing the best with older kids and adults with FASD are ones who have planned ahead and who are assisting their child. For some that means living in the basement, above the garage, and for one family it even meant building an apartment on to their home for their daughter to live in.
They need cradle to grave support.
Learn to protect your child.
Change their socially unacceptable behaviors. It’s not fair to a child or the parent to not try to change a child’s bad behaviors. Some behaviors you will not be able to do anything about, but try. Often you cannot change their behaviors but you can change their environment. You can change the way you look at something or you can eliminate the temptation.
I know our children must get tired of hearing us say, “That is socially unacceptable.” (2 hours doing a 10 minute job)
Your job is not to “get them” when they blow it, it is to “train them.” Strive to feel good about your parenting. The purpose of consequences is not to get them, it is to change their behaviors.
We work on little things such as bickering all the way up to a child saying, “I should hang myself.” For bickering they have to go back to “Home Base,” which I will talk about later. For making a statement like I should hang myself, even though we knew they were just mad and did not mean it, we put the child on suicide watch. That means they have to stay right next to mom or dad. We explained that even though they did not mean it, they have to learn to control what they say. It is not socially acceptable to say I should hang myself.
Wear them out, keep them active, kids who are tired are often nicer. One of our favorites is firewood, also organized play.
I’ve coined a new saying, “Extreme Parenting.” It is what I think of when dealing with our hardest children. “Extreme Parenting” means even tighter controls.
One national speaker said, “If you are not accused of being a control freak, an enabler, and of being co-dependent, then you are not doing your job.”
So do them and yourself a favor, try to change their socially unacceptable behaviors.
Teach them about FASD. This is to help them understand about their behaviors, confusion, and their need for help. Teach them about friends, about proper sexuality, and teach them the percentages. Use these notes to teach from. Let them listen to the CD of this lecture.
Teach them about “Friends.” “Friends” are people who help you to do good, to do the right thing. “Friends” help you to meet your goals in life. “Friends” are not people who get you to use alcohol or drugs, or get you to steal, be wild, lie, sneak, be crude, hurt people or things, or get you into trouble with the law.
Sexuality can be a very big problem, 60% get into trouble over sexual issues. It is their impulsiveness – their lack of self control that gets them into trouble. At the age of 13 they are often developmentally only 5. Teach them sex is for married couples only and in order to get married they have to be eligible. They must have a job and be able to keep it; they need a place to live, a life plan in place. Tell them sex is a wonderful thing for married couples. Tell them sex may feel good if they are not married but it can cause a lot of confusion and trouble. Then go forth and take care of their babies that they create either in or out of wedlock. We have explained to our children that if they have a baby out of wedlock it does not automatically mean we will raise it.
Teach them the percentages: 90% have mental health issues, 81% need assisted living, 79% can’t keep a job, 70% are victims of violence, 60% get in trouble with the law over sexual issues, 60% have disrupted school experiences, and 60% are either dead or incarcerated by the age of 30. You do not teach them these percentages to discourage them, but to teach them how important it is that they avoid these problems and how important it is for them to let you or someone help them.
They often need someone to help make decisions for them, to keep them on task, and to help them to have self-control. That person is sometimes referred to as an “External Brain.” We all have them; a boss, husband or wife, God, policeman, or friends. (Dishes) (A bowl of soup)
We also try to teach them to be their own external brain by using lists, structure, door alarms, or “Home Base.”
“Home Base” is very important; it is a table or place where the child must be at whenever they are not doing something else. At the table they can ask permission to do something else, talk in low voices, play games, read, do crafts, or do school assignments. The purpose of this is to teach them to “stop and think” about what they want to do, to be calm, and to get focused. As our kids are getting older they need this even more. Our middle teens need it more than our 7 years old. They have bigger bodies, and they think they can do more. For the ones we are using “Extreme Parenting” with they can only get permission to leave the table if they are with a PCA or an adult.
They need to understand about FASD so they can learn how to function with it. Understanding it can greatly improve their behaviors and their self esteem. We do not allow them to use FASD as an excuse. They need to understand that as they get older their life is going to be different: they need to understand that they will need assistance. It is unfair to them for you to let them think that they will not need help. (Lady in Arkansas)
So, teach them about FASD.
Don’t get hung up on the statistics, use them to realize the severity of the problems that a person with FASD faces. Don’t be discouraged by the statistics but instead be empowered to help. Take serious what you are up against.
Statistics can be very confusing. I was at a conference once where one of the speakers said that 60% are dead or in prison by the age of 30. I simply can not find where they got that number. I can find were it says that 60% over the age of 12 have been incarcerated for mental health, alcohol or drug rehab, or for crime. I can also find statistics that say 75% of males with FAE between the ages of 21 and 51 are incarcerated.
We know that many die early because of poor choices, because of medical reasons, and because of suicide. 23% attempt suicide, and 43% threaten suicide.
94% have mental health issues.
A person with FASD and their family are fighting very hard statistics. It is a fight worth doing.
Be involved in their Education. All too often school is where they really start getting into serious trouble. It is where they make “Friends.” It is often a very frustrating place for them.
Public School – One national speaker said that if you were going to design the very worst place for these kids it would be public school. However, there are some schools doing a great job helping kids with FASD. They are usually schools which have received special training, and which have embraced FASD. They are schools in which the parents are part of the “Team.” Educate your school about FASD.
IEP’s. First chose your IEP team carefully. Make sure you have people on your team who understand FASD. After the child turns 14 they will have a transitional IEP. I believe you should be moving in that direction before then. Team is a very important word in this. Try hard to make it a team effort. Your child needs it.
I know some parents who have written into their child’s IEP, “No homework.” I know other parents who want their child to have homework, because it gives their child structure in the evening. The I in IEP stands for individual, the plan should be tailored to each student. The plan should be a team effort, with the parent having a lot of say. Most of the time the parent knows what is best for their child. I believe that the professionals need to listen to the parent and then find solutions rather than telling the parent what their child needs.
Concrete Vs. Abstract – most of our children are very concrete and it causes them problems and frustrations in both academics and behaviors. (Blue shirt)
Sometimes when I ask some of my children a question, I want to say, “Why won’t you answer me?” Some of them have a problem retrieving information. Many times a delayed response from them is not defiance, but that they are still trying to figure out the question. (Sort of like a stroke victim.) Imagine what this must be like for both them and their teacher.
A professional explained to me once that one reason many children get into trouble at school is because they cannot do the academics. He said according to kid thinking it is “kind of cool” to be a troublemaker, but it is not ok to be stupid. So if your child is a trouble maker see if it’s because they do not understand the work.
School needs to be as non-frustrating as possible.
Many kids with FASD find it very hard to understand Time and Money. They may be able to do it on paper, but not transfer the concept into life. (Broken blue slinky)($4.50 – $55.00 remote control)
Give them the opportunity to go as far as they can. Gently push them, be there for them when they can’t go any further, back off the pushing, and then revisit it again later. They are continually growing and maturing and developing, but often much slower rate than their peers.
Even if a student has the intelligence to go to college they may not be able to because socially they may not have the ability. So they need to either do something else or they need assistance.(Stealing at Walmart)
So we made the discussion to school at home.
The first time I went to our special-ed department I asked, “How long do I have to try to teach the difference between nouns & pronouns?” His reply was, “Teach life skills, life skills, life skills.”
This has been really hard for us to really understand. It is so contrary to our school experience, but it really does help them and us.
Our children with FASD are learning more academically in 2 hours now than they use to in 6 hours.
Our School is going the best it ever has. The following is the schedule we are currently using.
- Before breakfast: room clean up, be available to help with household chores, meals or childcare.
8:30- 9: eating and explain the plan for the day, teaching, and devotions.
-9 – 12: house clean up, chores, projects, and make bread – which is a life skills, They do PE, and they do crafts. Crafts include pottery, hand and machine sewing, crocheting, beading, and basketry.
-12 – 1:30: lunch, dishes, maybe free time.
-1:30 – 3:30: academics, sometimes group school but usually self directed studies. During this time they can be taken by an adult for special instruction or for a project. Learning the life skill of two hours of focused no nonsense work is very important.
-3:30 – before dinner: free time but must ask permission for what they want to do. They would not say, “May I go outside,” must be specific. Some may help do other things at this point, such as helping to cook dinner or other chores.
It has taken years of changing to get to this point. Our schedule will change as our kids are getting older as their skill levels increase. Each child truly is different and at times needs something different.
Go and get involved in their education. Make a plan for what will work for your child.