Tips & Tactics

Provided by parents, caregivers and people affected by FASD, the information here is about "what works" for persons with FASD.

The content comes from families with a loved one affected by FASD, or from others who know someone affected by prenatal alcohol exposure.

 

Coping with Dysregulation

I have a child with FASD who will respond angrily and mean often. He gets dysregulated at the drop of a hat.

Just a while ago, he asked if he could watch a television program that I hadn't heard of. My policy is to check out new TV shows to ensure it's okay for him to watch. I said, "Okay, let me look (at the program description on the web) and see what it's all about."

He started to clench his fists and his jaw. His face turned red, his eyes bulged and his brow furrowed. I could tell he was really angry and that he was on the verge of shouting at me.

I realized that he must have heard me say "No" instead of "Let me look to see if the program is appropriate." Or, maybe he saw "no" in my facial expression or heard it in my tone of voice; or he thought I wouldn't approve of the program because I said "no" the last time he asked the question.

Regardless of what triggered his reaction, it was beyond his control.

Because he reacts so strongly so often, I don't push my child with FASD to talk to me "correctly" or in a "calm voice." I know that that just is not going to happen. Here is the strategy I use: I bend down to his level. I lower my voice and calm my own breathing, and help him regulate.

He may start crying, or even get more angry, because I am not answering "Yes" exactly at that moment. I keep myself focused on the awareness that his brain is "mush" when he is dysregulated. He cannot process.

So before we go to the den to check out the program I help him get himself somewhat in control, using skills such as deep breathing.
He cannot focus on more that one thing at a time; so that is all I give him.

— From a mom named Susan


Giving Things Away

Why do persons with FASD give away their things?

My teenaged son with FASD often gives stuff away: all sorts, from electronic video games, to bits off his bike, to new clothes.

When I ask why, his reply is, "Oh, he'd never played that game before and wanted it"; or, "He liked those clothes, so I let him wear them"; etc.

Is this about money and value being abstract concepts? Or, is it more about wanting to be liked and to fit in? I feel that giving his things away makes my son very vulnerable because people (especially teenagers) take advantage of his giving nature. —From a mom named C.

Adults with FASD weigh in:

I think is fairly common among those who live with FASD, and it includes me. I am not sure why I do it; and yes I say DO it, not did it.

My external brain (EB) is constantly asking my why I gave this away, or gave my last dollar to someone, and all I can come up with for an answer is "Well, he/she asked for it, and I had it; so I gave it." But I'm working on (stopping)  it!  —From R.J.

He wants to fit in. I used to be the exact same way. Tell your son that he can't do it any more. Then, go to the other boy's parents, and get the stuff back. These people are using your son. —From A.


Help! Stealing!

A mom posted a message in exasperation to an FASD-related email discussion list. (It is summarized, with headings added by the webmaster, below):

I STILL struggle with accepting the idea that my son with FASD makes decisions to steal and then decides to lie about stealing that aren't willful.

If kids with FASD can't think forward to consequences, then how can they be so manipulative? How can he know to hide "stuff" in his pants, socks, or the hood of his sweatshirt?  How can he know to "steal" from the kitchen pantry and plant the item in his room for later? It seems to me as if he is always on hyper-alert for every single possible opportunity to sneak and steal

I can't differentiate his ability to be so keen on getting what he wants, sly enough to hide it, quick enough (like a magician!) to slip by me whatever contraband of the moment, but not have any realization that there will be consequences!!!

How could I expect a judge or a policeman or a teacher, or our priest to realize and believe that his brain isn't capable of "forward thinking," "cause and effect"?! 

I read and study (obsess?) the FASD-related information wherever I find it. But, I can't wrap my brain around the concepts... Well, I can comprehend them, but I can't accept them as explaining what's going on my house with my kid. His behavior, while "typical" of FAS, is still to be considered "not his fault"?

I'm very consistent, clear, logical, more choleric than not; and honestly, I suck at believing (in the moment) that  my son is devoid of culpability on some level.

I struggle with anger, sarcasm, and harshness in my responses and words to him.

I don't hold a grudge and let things go easily, (thank goodness), but I know I say things I shouldn't, and I can't stop. I'm not physical with him, but I can be a smart aleck when I am at my wits' end. And I have apologized more than a parent should have to for words said in utter frustration!!

Have I mentioned how sick and tired I am of finding other people's cell phones after someone's mom has called us looking for their kid's phone?  Last weekend, he stole the cell phone of the altar server that he was serving Mass with!  My response: "Did you take Father T's phone, too?!"

Seriously!  How does he live with himself?

From a mom named A.


Here is a thoughtful reply, also summarized and headlined:

I think this is maddening, too. It is so hard to understand.

But, to steal or to take things, and hide them places, is really pretty rudimentary.  Some animals do this, too. If the brain says, "Oh, how pretty. I want that," then you just take it. One eventually learns one more step and then to hide it.  Very little kids get this.

But this is not the same as planning ahead or seeing the consequences of one's actions. That takes a different kind of processing and higher-order thinking. Understanding math often takes some of the same abilities, and that is why it often elude our kids.

If our kids  with FASD could really seen the consequences of their actions, if they could fast forward to the next many steps, they would learn not to steal/take things; and, they would feel remorse for what they have done (and I mean real remorse, not just the remorse of having been caught).

How can he live with himself?

Easy, he just doesn't see the problem, nor does he see how his is hurting others. He does not have a neurotypical brain and so we (parents), with our neurotypical brains, cannot understand the way they view the world. We  parents have a hard time understanding this, so how can others (teachers, police, priests, et al.)?  But, we need to understand that our kids' brains have been injured but not destroyed.  So, some parts work and others do not. FASD is rarely an all-or-nothing sort of thing.

All this said, we do need to hold our kids responsible.

Sure, the brain injury (caused by alcohol toxins) is not our kids' fault. But like all of us, we need to help them understand that all of us must take responsibility for our own actions. It took me a long time to understand this with my own child. It is difficult to learn how to respond to our kids' behaviors, to understand their disability but not to  let the disability be an excuse for poor behavior.

So, we need to supervise, to be the external brain, to teach and teach and teach.

Think in terms of how we help a very young child to understand these things: We calmly and slowly explain things, with the fewest words possible. Then, we demonstrate the correct way to do things (e.g, you see something you want; you admire it; you don't touch it; and then you move on).

As with my neurotypical children, I required that my son with FASD had to make restitution for every infraction. I did not get angry (Oh, how I wanted to just scream at him, but didn't) but just said things like, "Oh, I am so sorry that you forgot to do ABC. So, now, you must do XYZ to make up for your mistake. Mistakes are opportunities to learn."

So, for example, if he took something from someone, he had to return it, had to apologize, had to write a note of apology and the had to 'make restitution." Restitution might be giving up something of his own, paying money, or whatever seemed appropriate. This was done with love and nurturing.

He slowly began to learn.  But , it is a long, tough road. —From a mom named V.


Interpreting Facial Expressions

Children with FASD don’t process nonverbal cues, including facial expression, as well as neurologically "typical" children.

Here is an interactive site for a child who has difficulty interpreting facial expressions.


Lying or Confabulating

Our kids with damaged brains do confabulate — they can't help it

Confabulation is something damaged brains do unconsciously

Our kids can make up a reality that explains why they feel bad. One little boy got a headache with a fever. (When asked) he said his dad hit him with a 2x4. They can get quite caught up in their stories and act as if they are real. And to them, the confabulation it becomes the reaity.

We have to be careful not to validate that reality

If we validate a false reality, it does become reality for our kids because their brains are damaged. The child who says she was sexually assaulted, when she was not, will remember the assault as if it was real -- if we validate it.

We walk a narrow road with our children. I talked to my (FASD-affected) daughter about the confabulation by explaining that her brain will make up memories. We are careful to confirm any reports of trauma or abuse before we take them too seriously.

Our kids also lie, just the same as anybody else. from a mom named Delinda

The studies on FASD show that memory is poor, the ability to sequence is bad, and the ability to "connect the dots" is bad.

I think these things make it very hard for them to put it all together correctly and, as you pointed out, quickly. They don't want to appear stupid, so they just keep talking.

Boy, my son would do this all the time. Sometimes, I knew it wasn't true, because I had been there (with him)! Other times, I would suspect that what he was saying wasn't accurate. When he became much more linguistically mature, he could explain what was happening in his head: "But, mom, I meant....." When he was able to do this, I understood more that he was not really lying; he was doing the best he could.

Lying is not unusual

Now, this doesn't mean that (people with FASD) don't also out-and-out lie. I think they lie like we all do--only they get caught more easily!!!

Understanding is key

I think it is things like this that we need to understand about our kids in order to understand them and to help them navigate this really strange world (strange for them); and not to always scold or blame, which is so easy to do (and I did it more times than I would like to admit).

—from a mom named Victoria


Preventing "After-School" Meltdown

What works to recharge my FASD-affected child at the end of the school day?

For my elementary-age kids, it was helpful to have juice and crunchy snacks in the car at school pick-up. Usually, young children with FASD are DONE by the end of school; so, if thirst and hunger are triggers for a meltdown or tantrum, this can help to prevent it .

The carbohydrates (sugar) and protein in healthy after-school snacks help to nourish the brain, which needs it at this time of day. Plus, the crunching is "heavy (sensory integration) work" for the mouth, which helps with the level of arousal at that time of day. — From Tyla Sawyer


Social Skills Training

My son with FASD recently finished an 8-week-long social skills training class put on by Easter Seals and based on the work by Michelle Garcia-Winner.  It was a fantastic class!  Most of the boys (they were all boys) were on the autism spectrum, which made my son one of the better participants.  That, in itself, was a great thing, as he doesn't find himself in leadership roles very often.

Anyway, prior to the class I purchased some books by Michelle Winner and both my son and I read them.  He learned much of the material they had in the class in the books, but the class practiced them.

All of the books talk about the same set of social "rules."  Basically, people are always thinking about other people.  When someone does an expected behavior in the presence of someone else, it creates good feelings in that person. Or, if a person does an unexpected behavior, it creates uncomfortable feelings in the other person. Those feelings have everything to do with how that person will think about and treat the  person.  The books also go through a lot of various scenarios.

After reading the books and taking the class my son has gone from being the kid who sits all by himself while all his classmates hang out together, to being one of the group.  He is 12, and the whole social thing is so HUGE that I'm really glad I happened across this intervention.  He also started a new school this year, and these social skills he has learned have allowed him to meld into the well-established social realm much easier.

I can't recommend these books enough!

Website: http://www.socialthinking.com/

—  From a mom named Lynn


When "Attitude" Comes From Low Blood Sugar

What has made a BIG difference for us: detecting hypoglycemia, also known as low blood sugar.

Did you know that blood sugar, or glucose, is the only fuel the brain uses?

Recently, our 16-year old boy entered 9th grade in public high school where every teacher said what a delightful boy he was. Suddenly, as I proactively maintained contact with his teachers, I started getting hints of poor behavior which included belligerence, talking back, disrupting class, and generally ugly and unacceptable "attitude". He got two detentions.

Then I put two and two together and realized that under the school-day schedule, he is eating breakfast (IF he actually eats it) at 6:45 a.m., and not eating lunch until almost 1:00 p.m. Five hours without food!

This boy is having hypoglycemic (low blood sugar) reactions. I would, too, if I didn't re-fuel for five hours.

I am familiar with hypoglycemia, because I have had it myself. It is a condition where (for various reasons) the level of glucose, or blood sugar, drops to a low level where the brain is not able to function correctly. [Remember, glucose is THE ONLY energy supply for the brain.] The brain is not receiving any fuel, so it goes on low pilot or goes haywire.

Symptoms of low blood sugar

When they start to "fall apart", we know they are hungry (or tired - or both; low blood sugar makes you tired!)

When our son is hypoglycemic, the ugliest things come out of him: hatred, nonsensical accusations, profanities, illogical gibberish, anger, etc. - things that people out of the family cannot imagine from him. Until, that is, these few teachers who, I realized, he had during the hours prior to having his lunch. No complaints from the teachers in the first two periods, or the two after lunch, just the classes where his brain was starving,

Hypoglycemic reactions can be triggered by other types of activity: e.g., stress, feeling threatened. Of course, not having fuel for the brain and all the other metabolic functions of the body.

Our tactic

I was able to explain this to our son, and he began to see for himself that eating affected his behavior. I spoke to the school about his need to eat midway through the morning, and I now send him with cheese and crackers every day for this purpose.

(Important Note: Raising the blood sugar with actual sugar, fruit, etc., is not so good, because it can set in motion the insulin reaction, which may lead to low blood sugar again. (Contrary to what the school nurse may say, protein foods are better than any sugars.)

Also, he realizes more how important it is for him to eat his breakfast before school. At home, though, I still have to be vigilant about his fixing his breakfast and lunch, and not stretching himself too thin.

End of vignette: all the teachers' reports improved, and no more belligerence in school. Also, when my boy is "losing it" at me at home, he realizes he may need to eat. He sees he is a new person when he has eaten.

I share this because, while I am still very much struggling to parent our son, recognizing this condition has helped both of us, and the rest of our family, dramatically. Recognizing this physical aspect of his being helps me to try to remember that the ugly things he says to me are not really his "working" self , but come out of a compromised brain struggling under its lack of fuel. I have a way to go to be able to not take what he says personally, but it's getting better.

I feel that supplying the brain with sufficient fuel to help them deal with everything they face is crucial. They will feel so much better if their brain has sufficient fuel - it's a given. Not that it erases all problems - just that at least the metabolic basis is in place for healthier feelings,

—From a mom named Maria.

Avoiding Power Struggles

Don't take it personally

I find, when I am in the moment, I have to remind myself NOT TO TAKE IT PERSONALLY when my son refuses, as it then becomes an instant power struggle. You as the parent need the child to do something and you end up processing it as disrespect, defiance, refusing to listen, etc.

I am speaking to myself here as well as to others. The reality is, the (FASD-affected) child is simply overwhelmed, and cannot comply, even if they want to please you.

When I take it personally and get emotional, I might raise my voice, or repeat myself, or put my hands on my hips; and then my guy will say right away, "Mom, you are getting angry... you look angry." So, he is able to read my body cues and process that, but he cannot for the life of him understand what I am angry about, and he did nothing to bring on my anger or frustration. My guy has no self-awareness, which was documented at (the clinic where he was diagnosed). So, I have to remember, if he has no awareness, he is not doing this out of spite or misbehaving, he simply can't.

What works for me

I have learned by trial and error over many years to say it once, and wait. If he does not comply, I will simply say it one more time as monotone as I can, with no emotion, and then walk away.

If he does not comply, I put him in time-out. I tell him, "You need some quiet time to remember what I asked you to do. You need to stop what you are doing, and remember." After he is done yelling or crying it out, he might say that he simply can't remember. Then I will ask him if he wants me to remind him This apparently works better than telling him over and over again, (because) my guy will say I am yelling at him if I repeat the request. When in fact I'm just being repetitive. I have told him that (yelling) is the wrong word, (and that) I am not yelling. He has replied, "My brain thinks you are yelling at me. It's too much." So, repetition overwhelms my guy.

Will it work for you?

I know it is more complicated (in families with) the dynamics of other children. I have one; I can put him in a time-out and then we pause, then regroup and redo. (Parents with other children must) redirect (their child with FASD) and keep the younger ones safe from her rage and impulsivity, I know. I can imagine that (the FASD-affected child's) picking on younger siblings never gets old (for them). But you have to let (your child) know that, as soon as it starts, you are going to interrupt her or redirect her, that this is not acceptable. It's similar to how you would pull on the chain of a puppy to indicate (that) a correction is necessary, (that it will occur) quickly, every time, until (the puppy learns.

Hang in there. Pick your battles, take a deep breath and let the rest go.

From a mom named Christine


A Wise Story About Dealing With Schools

Our son came back from a therapeutic residential placement in early July. We had our doubts we could provide the controls to keep him under control and in school this year. We were looking to place him either in a special-needs private school appropriate for him relatively nearby, or in our local public school while keeping the other kids in school safe. He is 16 and in 10th grade. Needless to say, he is into girls...before we adopted him he was sexually abused; so he has sexual issues and is considered to be at risk of becoming a sexual predator on top of going through adolescence.

Before the school term began we met with the school

My initial contact with the high school special-education person was not promising. We then engaged (legal) counsel..(for) about $2500. We hope Social Services (from where we adopted our son) will pay. Since we brought counsel, provided extensive documentation...(and) a summary (that I wrote) of my child's issues, (the school) agreed to provide ... continuous one-on-one (support) for our son and put him in a "school within a school" type setting.

And then school started

(After this agreement was made) I found out from our son that he ate in the large primary-school cafeteria during lunch, which was contrary to our understanding (with the school). I surmised ten that one-on-one was not continuous; and I sent an e-mail to the special needs representative for the school that evening (about that, and also) alerting her that as I was concerned that (my son) would get into trouble...The day before yesterday, we found out that at some point (my child) had sexually harassed a girl at his school. It took some time for this to go through the school bureacracy.

What I did

So, to cover our (potential) liability (for placing a potentially dangerous child in the school), I sent an e-mail addressed to the special needs representative and two of (my son's) teachers, telling them that (my son) must have done this during a period when he was not under one-on-one supervision; and I surmised that it happened on the first day of school (because that was before the school began providing him) one-on-one supervision...I received a fairly quick reply, saying that one-on-one was continuous, and that the incident didn't happen on that first day; and asking who had told us one-on-one hadn't been continuous; and that he had been in the main cafeteria (for lunch).

Needless to say, I sent a reply back, admitting that my supposition that this incident had happended on the first day was just an assumption; but.. that this had to have occurred during a time of no supervision. The school representative said they would investigate.

My wife received a call from the principal, threatening Social Services intervention, as he had received a "garbled communication" indicating we had physically assaulted our son, trying to get him to go to school. My statement was, to paraphrase, "Our son refused to go to school; to make him go to school would require physically dragging him out of the house and would likely lead to violence, so we deferred."...later, near the end of the school day, I received a call from the school representative...(she said) that continuous one-on-one had not been present that first day and that she had met with (my son's) teachers...(and stressed to them)...that (our son) needed to be under continuous, close observation at all times while at school. This was, in a sense, a mea culpa.

And the moral of the story

I thought I would share this...to illustrate why it is important to be very open and up-front with what our children need. Our son's impulsiveness and sexual issues can provide (them) a liability issue that needs to be addressed...I sent my inquiries via e-mail to make sure there was a record of my communications. I think the school knew that. Hence their initial response and eventual acquiescence to it being their responsibility (to closely supervise him at all times).

(My son) didn't go to school today as well, and the school sent a behaviorist and his one-on-one supervisor to talk to him at our house. They also offered to reimburse our automotive costs for driving him to school if that became necessary...

If this helps anyone out there, then I am glad to share this story.

From a dad named Robin


Communicating Via Email

If your teen or adult with FASD uses email

I just found out something recently that kind of amazed me.  My 15-year-old daughter who has FASD wrote me an email about something she was annoyed and upset about. Her email to me was long, and quite well written. I decided to email her back.  We are not very good at communicating verbally; it always escalates into a fight and has one or both of us interrupting and arguing back and forth.
 
In my message to her I mentioned one of our "house rules": showering every day. The message ended with “Love, Mom.”

She read my email, and emailed me back her response. It too was reasonable and well written.

I didn’t even know she could write/type to this ability, I NEVER see anything come home from school of that length or quality. And she did have a shower today!  At least for one day the email approach has worked! 

A lot of the time, (my FASD-affected daughter) believes everything I ask her to do is because I am “mean." I am really just trying to get her to do the normal things that everyone does in our family, such as helping each other, etc. When I talk to her about these things, there is anger in my voice. I do regret some of the things I say to her in the heat of the moment. She can really get my goat! 

But writing is a more thoughtful process. And I can proofread it before I push send.

Communication seems to be much better between us with these emails going back and forth. 

I will continue using email as long as my daughter and I can communicate this way. I will try to keep the emails short, and about one thing at a time. By ending with "Love, Mom", I plan to re-enforce my love for my daughter via email. Also, I plan to print the messages out. This way we can see her thought processes, and she can re-read the ones to her as needed, in a quiet moment to digest some of what I have written to her. 

I don’t want to write more than one email a day, or she will quickly get tired of getting emails. But I think she might look forward to getting one each day, as a way of showing how much I love and care for her and want what’s best for her.
  
So, passing this on as a possible solution to some of the communication problems parents have with our kids with FASD.  I hope it can work on some level to ease the stress in our family.

from a mom named Margaret
 

Coping With Anxiety In Your FASD-affected Loved One

Anxiety is pretty normal, and new situations cause anxiety.

Think about how you would feel if you had to travel to a foreign country, can't speak the language, there's a war in progress and yet you HAVE TO go and with no real preparation. That could be what your child is feeling. It's hard to understand what is going on and it envelops the whole body/brain/soul.

We all respond to anxiety in different ways.

I think your child may have been searching for 'comfort' items (food, the TV, the downstairs, the dog, etc.) and (by denying him these things) you were thwarting his every move to find this comfort. I am not saying that you should have given in to him (you have your reasons for doing what you described) but just to explain that, as he was searching for ways to comfort/sooth himself, he could not and so he found other ways: breaking the rules, throwing the dresses, snapping a rubber band. It might be helpful to find other , "legal" 'comforts' for him and do so in advance so that when this happens again, you will have a fall-back plan.

Magnesium is often used to help with anxiety.

There are also the Bach Flower products which can be very helpful....we used "Rescue Remedy" on many occasions when my son was younger. Most health food stores have these (we got ours at Whole Foods) and they have all sorts of herbal remedies, all listed for what they can do. If your child has allergies to pollens or flowers, these would probably not work for him.

I also use the TV to calm myself and to get to sleep.

Your child may find the TV working in the same way for all kinds of other reasons and he was trying to negotiate this with you. The only problem is, you couldn't make this happen at that very moment, like your child wanted and needed.

Plan in advance: Get the TV, create rules, keep certain channels blocked, have rules for what he must do to keep the TV in his room, and then go for it. I would also have 'legal' foods available that he can take to his room (for comfort) and rules to go around doing so. All this should be discussed and planned out when everyone is calm, so that they are ready to go the next time he is anxious. Writing the plan down is a good idea.

He wanted to hold the dog.

You may not want him alone with the dog, and you may have rules here. So, how about finding him a beanie baby (something masculine, not cute!) or a stress ball/stress object that he can hold and work with. If he is willing, even a stuffed animal of some sort. Again, he needs the comfort he is seeking and he cannot calm himself without these things. So, replace them with something else.

Some medication may be needed.

Or maybe he is on some, and this is adding to his anxiety. When meds are involved it is ALWAYS a good idea to ask, "What (medication) is he taking, and could this be part of the problem?"; and "What (medication) should he be taking to solve the problem?"

You asked for ideas and observations....these are mine, for whatever they are worth.

From a mom named Victoria


Food, Eating & Nutrition

Crumbling frozen greens to mix in with other dishes

I freeze fresh spinach. Once it is frozen, it crumbles very easily. I sprinkle it in everything - spaghetti sauce, chili, taco meat, etc., and it is very difficult to detect. (I am the master at hiding veggies in things so my kids don't know!)

From a mom named Lynn

Cookbooks include recipes for hiding vegetables in other foods

There are cookbooks that tell you how to hide vegetables in other foods that kids (people) like. For example, Deceptively Delicious, by Jessica Seinfeld. She pretty much purees things: spinach, zucchini, carrots, for example, and uses the puree in place of oils and other things. She has tried her recipes on her own children, her husband (comedian Jerry Seinfeld, who has said that he would die happy if her brownies, made with spinach, were his last meal on earth) and her children's classmates and friends.

Try this with your child, and see how she responds before you tell her how you did it. If she likes what you have made, you can teach her how to puree vegetables to put in her own home-made meals.

From a mom named Victoria


If Your FASD-affected Student Plays a Musical Instrument

I pushed my son with FASD to join the high school marching band (he started playing trumpet in 4th grade, but decided he didn't want to be in band in 7th and 8th grades). I knew that he would benefit from the structure and group focus, so I kept encouraging him; and I didn't listen when the school counselor in middle school thought that my son wouldn't be able to handle it (in high school).

My son has participated in sectionals, marching practice and band camp this summer, and is now in the beginning of the school marching season. He LOVES band and is so motivated — he talks about band all the time, marches when he walks from place to place, spends time getting in shape with push ups and pull ups, is excited to go to early morning practice and stay late for evening practice. He is a different kid with a purpose —I'm so thankful.

Our oldest three kids were in the same band in high school, and I knew it would be good for (my son with FASD), but I did have my doubts, because he has struggled to stay on-task.

We are so encouraged and hopeful for him and know that all the struggles were worth it - I'm sure there will be bumps along the way, but there is hope and it is important to search for that special group/hobby/job/skill/sport, etc., that will provide our kids with a place to belong and feel good about themselves.

From a mom named Kathy


Keeping Perspective

It's Hard to Avoid Getting Angy With My Child When She Resents My "External Brain" Support

One of the hardest things for me is when my (FASD-affected) daughter gets mad and says she is not going to do something that I am really invested in her doing. That is absolutely when, almost without fail, I lose my grip and get mad; and then she gets mad and draws a deeper line in the sand. And then I react to that, and off we go.

She Doesn't "Get It", and I Can't Explain

It just happened (yet again!) yesterday! (We argued) about whether or not I had a “right” to manage her money (which was an) agreement which she made with me when she was ‘in her right mind’. But then she gets upset about something else, or (she feels that) I don’t (handle her money) quite like she wanted, or (when I) don’t agree to (give her) money she doesn’t have but which she thought she had, and she is going to stop (our agreement). And then I get panicked, because I know I can’t force her to let me manage (the money she earns)...and I just can’t find ways to explain any of the logic of it to her...and then I get less flexible and more rigid. And off we go.

My "Aha!" Moment

Anyway, what I thought to myself this morning, in a burst of clear insight, was that I have as much trouble as she does in these times keeping perspective -- remembering that many situations are only temporary -- and remembering that especially with my daughter, whatever state of mind she is in, and especially the angry ones, she will be in a totally different state of mind four hours later.

So I have to think to myself: KEEP PERSPECTIVE

Whatever she’s saying is just for this moment and it will change in a few hours, or certainly by morning. Just because she is challenged with keeping perspective does not mean that I need to lose perspective also. 

These are my new mantras.

From a mom named Susan


Managing Transitions

I learned the hard way not to introduce topics that might cause dysregulation in my child during transitions

I often found myself wanting to complete my "to do" or "check list" and I'd mention things like, "Remember we have the dentist appointment two days from now" on the way to school. The information would upset his equilibrium as he was making a transition from home to school. This dysregulation would make him anxious. Sometimes he would even lash out verbally or physically!

In retrospect, that comment wasn't for him. It came from my need to communicate this information and help my child be prepared for the next "big thing." But my child with FASD cannot get prepared for one stressful activity while on the way to another, and I knew school was the biggest stressor of all for him.

I realized that I was setting him up (to get stressed) "big time"; and his processing speed is so slow. He can only process one thing at a time (he tested that way objectively during assessments) and, oh, it is so true in his day-to-day life.

I had to move from my needs and my anxiety about getting things done, to his need for an appropriate time and place to process a new topic and move on to a new task

The slower processing speed (in FASD) is a kind of brain disability. I had to learn that I can't fix that. I can't expect (my child with FASD) to meet me on my terms. I have a hugely fast processing speed myself, and so it's a mismatch. But I learned empathy from paying attention to when my normally rapid processing speed moves ultra-slowly when I am seriously stressed-out. That's when I feel "dissociated"; that is, when I'm unable to associate my feelings with what's going on in the environment, and balance or "regulate" my response. And I know that my child is under stress a lot because of his processing issues, and he is dissociated a lot of the time.

I know it sounds like such a small request to a lot of parents to expect the child to do "simple" tasks, like writing down the names of books for a school assignment, or even picking up their own socks off the floor every day!. But I saw my child going toward a meltdown  in the car, in transition from home to school or some other situation that stressed him out.

So now I wait until he is regulated (as far as I can tell) and then I go to the task. For instance, when he seems ready I'd say, "Here's is a sheet of paper. Let's write down the names of the books you've read for the report." And then I'd start writing it myself as he dictates (handwriting is a huge trigger for my child with FASD; and he has scribes to help him as part of his IEP).

From a mom named Susan


Melatonin for Sleep?

From the point-of-view of an adult with FASD

I sometimes use Melatonin, but being an adult I use 5mg about an hour before sleep. I assume that is an "adult" dosage 

I find it quite useful occasionally, but am not a fan of "how" I wake up when taking it. I do sleep very well, and occasionally dream (which I NEVER do otherwise), but I find myself "fighting" to wake up.

I should clarify... I've heard it claimed that some of us with FASD actually SKIP some of the steps leading into and out of deep (REM) sleep. When I usually awaken it's with a "snap" and I'm awake... that's normal for me, every day of my life ~ except when I've taken melatonin the night before. Then, I wake up slowly; it almost seems like I'm fighting to "snap" awake, and can't do it!

So, it's a very different way of waking up... and now at least I can understand people who use snooze buttons on alarm clocks!&; Anyhow, these are what I've noticed with melatonin.

Perhaps it is the timing that was off? It was suggested to me that if waking up was a problem to take half the dosage before sleep; and if I were to awaken during the night I would then be free to take the other half and try go back to sleep then. I don't know, but I imagine it's different for everyone. Just some thoughts...

From R.J.


From  the point of view of a mom of FASD-affected teenage boys

We use Melatonin at our house. The doctor suggested doses of 10 mg for two of my boys: one who is 15 years old who weighs 160 pounds, and one who is 17 years old and weighs 190 pounds.

I've been on every medication there is for insomnia, and Melatonin has been a blessing to me. I usually use 15 mg.

From Amber


Morning Transition Dilemma

A question about morning transitions 

Note: The content on this page comes from a discussion thread on an FASD-related email discussion group

My six-year-old son (with FASD) has been struggling during the past few days with his morning routine. We have charts at every point so that he knows what happens next and when; (this approach has) been working up to this point.

Yesterday, he was an hour late for school, even with continuous prompting from us. (Also, this meant) the natural consequence of having to go see the principal. Today was a repeat of yesterday, except he made it with me following behind him all morning!

Any suggestions of what I can do that will help him to be able to complete these tasks on his own that will encourage independence? It's been an exhausting three days of continuous prompting.

From a mom named A.

A valuable reminder about FASD and transitions

You are putting tremendous effort into (helping your child), and are to be congratulated for that. However, you are dealing with (your child's) brain damage. Part of (FASD's effects are) that "transition time" is out of whack. (Your child) may really be trying, but the world moves too fast for him!

Sometimes we have to try differently, not harder (see http://www.fascets.org/market_place.html) as Diane Malbin would say. How to find the "different" way is something that (requires) effort and time.

(Your child) is only six; and yes, it is aggravating (to adapt the routine until you find what works). But remember: (FASD is a form of) brain damage.

From an experienced "FASD parent" and FASD educator named Thelma

After adjusting the schedule

We changed things up a bit at home with the routine to allow a little more flexibility and (to provide) some positive reinforcement. I also started letting (my child) soak in the tub with lavender and low lighting.

I think perhaps we have been getting too busy (and) he became overwhelmed. He had a REALLY good morning this morning, and a good day at school.

We are also getting referred to an OT (occupational therapist) so we can get a better understanding of his sensory needs.

From A.

Remembering Daily Routines

Using a reminder chart for daily tasks

My daughter, Ally, had so much trouble remembering daily living routines, and I got tired of reminding her, so I made up a chart on a white board that was magnetic. You can get them at any office supply store.  I bought cute little flower magnets for the morning and stars for the night time. I wrote the "to do's" with a sharpie pen. You can erase items and change the board with the magic sponge! But then the child can't erase the list easily, as it would be from using a dry-erase marker. I placed the magnets at the bottom of the board.

I would write what Ally needed to do in the morning on the "morning" board, and hung it on the backside of our bathroom door. For example, brush teeth, flush toilet, put on clean underwear, etc.  When she did each task, Ally put a magnet next to it on the board, meaning it was done.

Same for the "night" board:  brush teeth, floss, flush, put on clean jammies, read, do sensory integration exercises (we called it "do your work out"), etc.  

All I would have to say then to Ally was, "Go check if all your magnets are up",  once in the morning and once at night  —glorious!  🙂

From a mom named Elisa.


 Structure & Routine: How Much Is Really Necessary?

There needs to be a balance. We found that routine and structure were the glue that held our daughter together when she was learning new things. That means her whole life was not structured, but specific times and places.

We can equate this to "comfort food." There were parts of her day that were easier because she understood and could rest in the grace of structure that had been established and then there were times of venturing out. Morning ritual was structured as was bedtime ritual when she was young. Much of that changed as she grew older. She is now her own adult person and lives independently. She follows the same plan. She has a balance of structure and new experiences. You will have to find the balance that works for your family and child.

From a mom named Jodee


Our daughter, now 15, needed home life structure, especially with limits. We couldn't be flexible with those, or she would lose predictability and feel lost. Now, structure is much more loose: just around eating and sleeping, really. But at school, where her biggest challenge is, structure is essential.

Remember, whatever age they are is not the same as the age they feel, so structure accordingly.

From a mom named Elisa


Yes, there is a need for some routine to provide comfort, security, and enough repetitions to "educate". However, our kids also need to learn to grow as individuals and become capable of making their own decisions, and some of those decisions may include trusting a mentor to help in areas where they experience significant challenges.

Most individuals with FASD are not... "basket cases", as crude as that may sound. They have varying levels of a variety of systems that may have been compromised, and unless they are allowed to stretch and grow, neither you nor they will ever know how much they can achieve.

Some people use the "strict structure" mantra to bully and control, not because the (person with FASD) needs it, but because the parent does not have the courage and faith to let their child flourish. If we are not careful, we can become our child's most significant disability.

My son began life with a huge menu of FASD issues... His future was extremely bleak. He graduated from high school.. . He has completed university courses online and is attending college. At age 22, he still has his challenges, but we deal with them together.

The brain is plastic and can grow and change, and we can develop coping strategies to deal with whatever comes. Have faith in your child and yourself.

From a dad named Bruce


I have FASD. Even now, at 29, I find that I need routine: (I need to) get up every day, eat, do chores, go to work.

Yes, I am a high-functioning person with FASD; but change and new things really are hard on me. (For example) I just moved into a new place with my boyfriend. I got really scared, nervous, teary-eyed, as it was all new... chaos, boxes, furniture everywhere... (It was) all fixable, but no routine or structure (put) my mind in chaos!

Growing up, I had to have structure and routine, or I would act up, or shut myself off. Out of my six siblings (we all have FASD, with me being the highest functioning), I have learned we all do/learn/cope with things differently. But structure and routine is a must (for all off us)!

From a woman named LS


Remembering Daily Routines

My husband and I create a list of "to do's" for our child with FAS. The list looks like this:
  1. Make bed
  2. Get dressed
  3. Eat breakfast
  4. Brush teeth
  5. Write goals
... and on and on through out the day. Each moment of his day is now planned. Some of his time is planned as "quiet time" or "free time" in which he works on keeping himself occupied.

The checklists give our child with FASD a visual reminder of what to do. For each of the tasks, such as "make bed", we have taught our child how to do it well; for example, we took a photo of the "made" bed and then posted it near his bed. (Kind of like preschool, even though he is 10.)  His older brother (who is 11) goes with him through the teeth brushing task. My husband, his older brother or I also check to verify that the bed was made, and that his underwear is on. Essentially, we keep him "on task."

The checklist fits into a plastic badge holder he can clip to his shirt. We have several of these, each containing a list of tasks our son can see. When he is done with his morning tasks, our son brings the holder to me. I give him the next holder which lists the tasks he will do for the next period of time. 

As a family we review goals at every meal time. I ignore a good deal of silly "sibling" stuff. Every moment I can I teach an appropriate behavior or reinforce one, using worksheets, stories, or affirmation of a job well done. Both boys get homework to work on their goals every day.

It was hard to set up this type of program, but for now it is going so much better than I expected. I am never putting them down or yelling at them.

From a mom named Susan
 

The Person With FASD May Have the Solution

A really great Sensory Occupational Therapist who helped us early on would say simply, "Feed the Need". That phrase has helped me both see my daughter's behaviors as Needs as well as helped me be able to address them in the way she needed me to Feed them. Whether it means getting her an ice pop to help her regulate, or to sit next to her while she's watching a movie, or to ...whatever.

Behavior is communication for all of us but especially for our kids who can't express themselves in more verbal/appropriate ways. We have to be willing to really listen.
    
From a mom named Gail


Check Out Your Child's Interpretation of Facial Expressions

A mom learns what is prompting her school-age son's "attitude"

I get a lot of "attitude" from my 9-year-old son. One day when we were talking calmly, he told me he does that (gives me "attitude") when I "get my 'angry face' on."

"What 'angry face'?" I asked. He rarely sees that! So, I told him to tell me next time I had my "angry face" on, so I would know what he was talking about.

It turns out that I look angry (to him only; I checked with my friends) when I'm a little frustrated and trying to get past it.

Ahhhh... he sees that one often!

So, I explained to my son that what he thought was my "angry face" was actually my "trying to work on using my words nicely" face.

Things have been a little better since then.

From a mom named Jan.

Psychologist and founder of Nonviolent Communication (NVC) Marshall Rosenberg, Ph.D., would say that "unexpressed emotion" is almost always perceived as anger.

So I'm thinking that this (way of interpreting emotional facial expressions) is a general (human) process, not restricted to our highly sensitive kids. Maybe one difference is that our kids often have so little in the way of filters, and in self-regulating, that the fear evoked by this perception of anger gets expressed immediately, and in spades!

From a mom named Beki.

Practicing facial expressions

When my sons were little they were clueless about facial expressions. I would work on it and make the faces-- kind of exaggerated. I would make a happy face or a mad face, sad, etc. Then I'd say, "Do you see this face?" "What does this face mean?" We would practice together in front of a mirror.

I do rearrange my face when I hear them coming to interrupt me; I think of something happy as they approach.

These days they are sensitive to my expressions and ask me: "Why do you look sad (happy, or whatever)?"

From a mom named Boni.


Some Kids Avoid Being Touched

I asked my son what prompted him to stop his unacceptable behavior

I asked my resident expert, my son Andrew, for a solution: here's his tip:

"Mom, I stopped (being unpleasant to you) because you kept threatening to give me 100 kisses ON MY FACE (if I didn't stop)!"

Andrew HATES to be touched!!

[ P.S. Oh yes, I did have to torture myself several times by following through on this "discipline" measure ;D ]

From a mom named Jacquie.

There are many life issues faced by adults with FASD. With older individuals affected by prenatal alcohol exposure, treatment is usually multimodal, with many different types of treatments necessary and applied as needed. At least some adults with FASD need an advocate who can “translate” the affected individual’s actions to the world—and help the affected individual understand his or her own actions (and how others respond). An interested and caring advocate helps an individual with FASD negotiate life tasks and learn necessary skills.

There is little research that has tested treatments for older individuals with FASD. The best information comes from the experience of parents and the wisdom of clinicians who have worked to help older individuals with FASD to become successful. The issues of appropriate adult advocacy, intimacy, parenting, living, and work arrangement—as well as direct treatment for older individuals with FASD—are complicated.

Because of the brain damage caused by prenatal exposure to alcohol, many affected individuals have such difficulty controlling their impulses and have such poor judgment that they will require close supervision or at least frequent monitoring well past their teen years. Parents must come to terms with the possibility of facing a period of never-ending adolescence.  The “terrible teens” could last into the “terrible twenties.”

An 18 year old with an FASD may:

  • Talk like a 20 year old
  • Look like an 18 year old
  • Read like a 16 year old
  • Comprehend like a 6 year old
  • Have the social skills of a 7 year old
  • Have the emotional maturity of a 6 year old

However, many parents of young adults with FASD observe that, sometime before their child reaches age 30, the young adult affected with FASD seems to calm down emotionally and socially.  Their child's cognitive abilities may not improve with age, but their emotional behavior and social skills appear to become tolerable. Finally, their son or daughter can engage in social and employment relationships with (limited) success.

The ultimate success of an adult affected by FASD will depend on continued guidance and close monitoring that might require a one-on-one mentor or a job coach, and the presence of an “external brain” in social situations.

Needs of Adults with an FASD

Rob Wybrecht, an adult with FASD who advocates for himself and others, has shared the following recommendations for supporting individuals affected by prenatal alcohol exposure:

  • Ongoing love and support from parents and extended family
  • Knowledge that they are truly loved and always respected
  • Person Centered Planning/Adult Wrap Around
  • Ongoing experiences in the larger community
  • Job coaching and job support
  • Payee and/or assistance with money SSI and/or SSDI
  • Supervised “independent” housing
  • Safe supervised social events
  • Life coach – therapist who is there for the long term and listens carefully
  • Concrete classes on health, nutrition, safety
  • Regular physical recreation
  • Substance abuse treatment with therapists who have knowledge of and experience with individuals with an FASD
  • Criminal Justice system that understands that brain differences impact their understanding, memory and behavior. Jail and prison will not change the behaviors, but structure, support, and supervision will.
  • If living in a group home is not an option, shared living with a physically handicapped but mentally capable person is sometimes a good fit

In addition, Mr. Wybrecht suggests that individuals with FASD use a number of common and easily available objects to help make their lives easier. These items include:

  • Vibrating watch, organizer, or cell phone
  • Clock that shows passage of time, visually
  • Foam earplugs
  • Big clear jug for car/house keys, wallet, watch, money, flashlight, receipts
  • Books listing jobs for the day
  • Laminated layout of the job space (for example, for a restaurant, a salad bar layout)
  • Wallet cards describing the individual's limitations to show, if stopped by police

Finally, Mr. Wybrecht notes that it  "takes ten persons on the team to assist one individual with an FASD." Team members he identifies include:

  • Trust Fund  Payee   (Family or Professional Manager); Disability attorney can help with the Trust Fund
  • Person Centered Planning/Wrap Around
  • Family Members
  • Clergy
  • Employer
  • Physician
  • Vocational Rehabilitation
  • Mental Health Therapist
  • Group Home Manager
  • Case Manager
  • Recreation Therapist
  • Probation Officer

Secondary Conditions and FASD in Adults

In adulthood, a significant percentage of persons affected by prenatal alcohol exposure engage in "high risk situations", such as getting into trouble with the law, exhibiting inappropriate sexual behavior, having clinical depression, thinking about or actually attempting suicide, and inability to properly care for themselves and/or their own children.

Streissguth et al. published a frequently cited study in the late 1990s with many dark and discouraging findings. These include the following:

  • Most adults with FASD have clinical depression. The study revealed that 23% of the adults had attempted suicide, and 43% had threatened to commit suicide.
  • Disrupted School Experience (suspension or expulsion or drop out). By the time students with FASD reach adulthood, the rate of disrupted school experience peaks at 70%.  Common school problems include: not paying attention; incomplete homework; can't get along with peers; disruptive in class; disobeying school rules; talking back to the teacher; fighting; and truancy.
  • Trouble with the Law (involvement with police, charged or convicted of crime), was experienced by about 60% of those age 12 and over.  The most common crimes committed were crimes against persons (theft, burglary, assault, murder, domestic violence, child molestation, running away), followed by property damage; possession/selling; sexual assault; and vehicular crimes.
  • Confinement (inpatient treatment for mental health, alcohol/drug problems, or incarceration for crime) Over 40% of adults with FASD had been incarcerated; about 30% of adults with FASD were confined to a mental institution; and about 20% had been confined for substance abuse treatment.
  • Inappropriate Sexual Behavior was reported in 65% of adult males with FASD.  This includes only sexual behaviors that had been repeatedly problematic or for which the individual had been incarcerated or treated.  It is thought that the actual incidence of inappropriate sexual behavior is much higher, and not always reported by the individual or the family due to embarrassment or fear of being reported to authorities.  Problem sexual behaviors most common with FASD include: sexual advances; sexual touching; promiscuity; exposure; compulsions; voyeurism; masturbation in public; incest; sex with animals; and obscene phone calls.
  • Alcohol/Drug Problems Of the adults with FASD, 53% of males and 70% of females experienced substance abuse problems.  This is more than five times that of the general population.
  • Dependent Living was the situation for about 80% of adults with FASD.
  • Problems with Employment were indicated in 80% of adults with FASD.

Useful Links

A Standard of Care for Adults - The Dysfunctional Years
Tips for Adults With FASD
Supporting Success for Adults with FASD
Visuals for Teaching Tasks and Concepts Although posted to an autism childhood education site, some of these images may be helpful for adults with FASD to organize tasks more effectively.
An Adult Reflects on His Life With FASD
FASD Challenges in the Adult World
How You Can Help Adults with FASD Manage Money
Disability Benefits
Criminal Justice
Job Training / Employment
Housing / Independent Living
Anger and Violence
Drugs and Alcohol
Perseveration
Sexuality
Marriage and Relationships
Parenting
Tips and Tactics
Travels in Circles A story in the Native American tradition of a young puffin with FASD who is left on his own. Focus is on ages 18 to 22.

Avoiding Burnout

Caring for an FASD-affected person is hard. Here are some tips for avoiding burnout, or for refreshing yourself after feeling burned out.

  • Sheer repetition of the parenting strategies that work, and working with a therapist who understand what you're going through. For example, I had to hear about ten times that positive stimulation is just as hard for my child to handle as negative stimulation before I could benefit from this information. At last, I could parent with a "less is more" concept and not be caught off-guard from the meltdowns that still occurred from my child experiencing too much change or excitement,
  • Having our regular babysitter help at times for part of a weekend day, to help take care of my FASD-affected child, so that I can focus more on my other child. And when I can get time to myself on the weekend, I try to add that in!
  • Through trial and error, finding ways to exercise with my kids so that I can get some of the exercise I need, meet their needs for movement, and spend time together. This not only strengthens our bond, but it saves precious babysitter time for other activities. It is definitely trial-and-error, with different levels of stamina to find what works. We've done walking and running, using a backup stroller, in case my younger child gets tired; swimming together, while I am doing my own version of water aerobics (I do various, continual underwater leg lifts) while I am next to them in the pool; and taking a tennis, golf, or swimming lesson together with my child who is old enough. This last one is great, because then I get to be around an adult who adds positive energy.
  • Being around other supportive adults, even though none of them is offering to babysit, helps refuel me. This one is key for me. The adult we're spending time with needs to really like my kids and to be warm and caring with them. That feels good to them and to me. I try to do this when we entertain at home or plan small outings.

—From a mom named Adele

 

 

Being a Warden, Not a Parent: How Do I Cope? (A cry for help)

To you all that have older kids with FASD, and especially those with adult "children," how do you do this?

Our son is 13 and my husband and I are already "done" on so many levels. I'm so tired of being a military sergeant in my own home: checking pockets and drawers and cabinets and under furniture -- ALWAYS finding things -- food wrappers, stolen cellphones from family and friends, broken things. He breaks EVERYTHING. He stands in showers for an amount of time he thinks equals a shower without using shampoo or soap-- more often than not.

It is a constant suspicious, seeking/finding, avoiding, stealing, sneaking relationship that is wearing us OUT. We haven't even begun to deal with "big" stuff -- drugs, alcohol, girls. G is with us 24/7 and homeschools. I cannot imagine the stress of him having an ounce of freedom.

I hired a "companion" last week, for two afternoons a week, just to give our family a break. The constant stress of wondering, "Where's G?" is wearing on all of us.

I have the baby monitor that tells me when he's in his room--which he has mastered staying out of the visual space, the lock on his door for nighttime, etc. But, I cannot go for two minutes without knowing where he is, what he's doing, and at times, I just get tired of it.

My husband works full-time and when he's here he says to me, "I don't know how you do this all day." I don't either.

I cannot imagine living like this for five or ten or ... more years.

How do you do this?

from a mom named A.


Been there, done that...and hope

How do you do it? One day at a time.

By the time H was 14, we were down to line-of-sight supervision. We had to do supervision to the extent that H’s bedroom door had to remain open at all times. If he did not comply with that, the door could be removed. (The psychiatrist and counselor were totally on-board with us. We strategized as a team. We didn’t have angry blowups and start taking things; we actually put in writing rules and consequences, and gave H his own copy. Room searches on a regular basis. No phone or internet access for him. My husband threatened to come in the bathroom and observe H actually using soap, and H knew he was serious…That worked. Any time we found contraband in his room (stolen, etc.) we’d start taking things out. Why should we give him more places to hide stuff, and make room searches more difficult for us? After a while he learned that every time we found things he would get more possessions taken out of his room, he wasn’t quite as motivated. (He even slit a hole in his mattress and hid contraband in the box springs.) We’ve gotten down to a bed, a lamp, and crate to be used as a table-no drawers. If he hides things consistently, why should we have to rip apart a room full of furniture and drawers?

Yes, it’s a drag.

I was depressed a lot; antidepressants have helped. We had respite to take H once a week so my husband and I could have sanity and time together. Even a few hours of being “off duty” makes a huge difference. We have had many people praying for and with us, supporting us, and listening to us. Support groups are (available) to help each other, and I got lots of ideas and support from (them).

I felt, "I am not a mom. I’m a warden." Those years felt endless. We never successfully gave H an ounce of freedom, which is a shame. But better to see him at all times and know he and others are safe, than having the police chase him with tasers and handcuff him when he’s “supposed” to be building a fort in our backyard…Yes, the lessons were hard.

There is hope. I worked for months getting H disability, then finding a suitable group home placement.

You are not alone, you can get through this, and you do it one day at a time. Don’t project out five or ten years!

We knew our plan was to work on disability and group home as soon as he was 18, so knowing there was a light at the end of the tunnel got me through a lot of days. Our son was placed in a great group home last year at age 19. Now a staff of 6 does what my husband and I did.

Note: There are distinctions between developmental disabilities (DD) and mental health disabilities. Although our son has well-documented FASD, his IQ is too high to qualify for DD. So his mental health diagnoses and his constant need for supervision and medication monitoring were what got him into a group home that is licensed for mental health.

— from a mom named Julie


Does anyone have an effective way to explain how individuals with FASD cannot make good choices?

In trying to get supports for our daughter, this continues to be the biggest obstacle. Not only do people insist that she make her own choices when talking to me, even after I have explained her disability and given examples of the many poor choices she has made (which I know were not choices but rather impulsive behaviors), they insist on constantly telling her, "You have the right to choose; it is all up to you, we won't make the choices for you..."; etc., etc.

I have explained the brain damage (caused by FASD) and how she lives in the moment, (that she) goes whichever way the wind blows at the moment, and have given numerous examples of how she has good intentions but how those get lost when she meets someone who suggests something else -- and then her intentions go out the window, etc.

I am at a loss! Does anyone have any suggestions?

from a mom named Lynn


Reply 1

I have found this really challenging also, especially for those "higher functioning" individuals who "look like there’s nothing wrong with them."

Here are three tactics that have been helpful in our situation:

  1. Starting with saying (to the person who is urging or expecting your loved one with FASD to make all choices on their own), “I know, by looking at her, she looks that is no reason that she should not be making all her own choices and should be totally capable of performing as others her age...however, the extensive testing she has had done (and here I pull out pounds of pages documenting the testing) demonstrate very clearly that her brain is significantly damaged, especially in the areas that impact the ability to learn from experience and to understand cause and effect.
  2. I have at hand articles by others and/or websites to share, so that they can learn about FASD from others and I am not the one who has to do all the teaching. (I prepared an extensive listing, which is also available here. I would choose a handful of the citations that you think would have the most impact on the person you are speaking with, and say something like, “Perhaps after you’ve read these articles/citations, this will all make more sense to you.”
  3. Over the years, I think I have gotten better at explaining why my daughter's "making her own choices" and even being in the initial meeting with (the service provider and me) would be counter-productive. At 22, my daughter can articulate herself that she does not want to be at these meetings, and that she wants me to be her advocate and sort out the initial accommodations without her.

For example, the treatment center she entered this summer started out along these exact same lines: the treatment team did not want to meet with me without my daughter present; they insisted that she needed to be involved in all decisions; etc. But I was much more able than I had been in the past to explain that it was my daughter’s choice to have me and her advocate at the initial meetings without her, and then to have us present her with the conclusions we arrived at at the meeting (usually in writing) so she could look over them and then agree to the recommendations, or to ask for changes. I had to be very firm about it, but ultimately they agreed.

from a mom named S


Reply 2

I pulled some things from the list of impairments that I included in my letter written as part of my daughter's application for disability benefits. I hope they will help you.

  • Impulsiveness - acting for immediate gratification, without planning or considering consequences(My daughter's fetal alcohol condition) has impaired her impulse control ability. Both her actions and reactions cause behavior that is often considered wrong, and sometimes dangerous. She lacks the ability to think things through before she acts.
  • Cognitive processing deficits – poor working memory and understanding(My daughter's fetal alcohol condition has caused) cognitive abilities which are inconsistent. There are times when something needs to be said only once. Most times though, repetition is required. She then requires time to process.
  • Slow auditory pace – doesn't always hear every word in a conversationAnother common manifestation of FASD is auditory processing delay. (My daughter) can hear, but she processes information much more slowly (than persons without FASD). She is still processing the first sentence while you have moved onto the next.

    (My daughter's fetal alcohol-related) problems worsen when there are other sounds in the background; for example, the normal noise of a store or restaurant or classroom. Her challenges with auditory processing were a significant problem throughout her school years. She has a difficult time filtering out non-essential sounds or words and focusing on what is essential, such as a teacher or an employer giving her instructions in the middle of many other things happening.

    Also, the more stressed, anxious, upset, or angry she is (all of these states happen frequently to my daughter), the worse her ability is to understand oral communication. However, even when she is not stressed or anxious, her slower auditory processing ability is still a problem. I have learned to speak to her in no more than one or two short sentences, always verifying first that she is not distracted and is paying attention to me. Also, if it is important, I will repeat what I have said, slightly changing a phrase, to give her a second chance to "hear" it. She rarely notices when I have given her the same instructions two or three times.

  • Inability to predict outcomes or understand consequencesPeople with FASD have an impaired capacity to make connections between cause and effect. In addition, their ability to learn from past experience is dysfunctional. For (my daughter), life is a series of unrelated events. She has great difficulty understanding that if she does something, like staying up late to watch television, she will having difficulty waking up the next morning, feeling alert and able to get to work on time. Cognitively, she cannot link how she feels in the morning to what she did the night before. So, she persists in following her impulses, even if something undesirable is likely to happen.

    Likewise, (my daughter) becomes upset when a hoped-for outcome (such as going to the movies with friends) doesn’t happen because she didn't do what she should have to make that result occur (such as setting enough money aside to be able to buy a ticket and a snack).

    As you can imagine, this neurological deficit causes any number of frustrations for (my daughter). She doesn’t understand why others become upset with her or hold her responsible when something she has done (or didn't do) results in a problem for herself or others.

Here is a list of disorders or challenges that characterize FASD; there is also a printable list of FASD symptoms there that breaks them down a bit.

Then you can add this information to the areas that relate to why your daughter makes poor choices.

Maybe this will help. Getting as much professional data to hand to the person you're trying to educate (may be) the only way they are going to listen to you.

from a mom named Terri


Reply 3

I suggest giving them one (resource) a week, starting with the most simple and straightforward. Also, when someone reports a similar problem (in an FASD support group or email list), print it out and give it to them.  Just hand it to them and say, "this person has the same problem with their child (as you sometimes have with yours)."

Trying to give too much information at once can sometimes make a person not bother to look, because they feel you are flooding them. But one (bit) at a time, they are more likely to read the information.

— from a mom named Patricia


For Those Who Plan to Adopt

I hope that you (or your family member who plans to adopt) will be given extensive training (by the adoption agency or facilitator) about FASD prior to adoption.

I know what it is like to desperately want to adopt a child. It is equally important to know what you're (or your family member) is getting into.

Is your (or your loved one's) adoption foreign or domestic? If you (or they) have been made aware of the FASD diagnosis, I suspect the adoption is most likely domestic. Our's was a foreign adoption in 2000, and our son's diagnosis of FASD was a very expensive after-shock.

If the agency or facilitator is forthright about the child's FASD, are they equally forthright about picking up the costs of future therapies and treatments for the child's FASD? FASD is very expensive in the long run, and you will never know in advance the degree of deficits or what challenges may pop up. Do you (or your loved one) have excellent insurance coverage? Will the state pick up any additional costs? Will there be a commitment to provide your daughter with frequent needed respite? FASD is a 24/7 diagnosis and your (or your loved one's) potential burnout should be prevented. Some FASD kids need one-to-one parenting 24 hours /day

I urge getting all of this in writing as part of the adoption agreement. Be careful that by being made aware of the FASD diagnosis prior to adoption that the state cannot later argue that you (or your family member) was aware of the FASD diagnosis, and therefor is solely responsible for all of the additional costs attached to adopting a special-needs child. Get it in writing now, so you (or they) don't have to argue about it later when you (or they) no longer have any bargaining strength

Sorry to sound so grim, but it's better to understand what you (or your family member) will be facing squarely. And it'll be easier to live your (or your loved one's) life and enjoy the child when you (or they) feel like you (or they) don't have to fight to obtain needed treatments, or you (or they) just plain can't afford to hire and pay a specialist, such as a psychologist or occupational therapist

And then, the parents still face the adoption challenge.

I would never give up my (FASD-affected) son. He's one of the great loves of my life. He is also the hardest, most exhausting work I have ever done. Had I known in advance, I would still adopt him, but I would have built protections against family financial hardship into the adoption agreement.

Tell yourself (or your loved one) to give your (their) heart, that's what it's for. The child (with FASD) will badly need love.

Parenting a child with FASD is an experience that has forced all of us to connect with the best and worst of ourselves and others. It's also like being on a roller-coaster ride for life; and there is no getting off. I advise you (your loved one) to build in safeguards so that you (or they) can get off the roller-coaster for needed brief rests and hire professional help.

May you all be blessed for stepping up to this challenge.

From a mom named Shirley


It is difficult to tell much about the child with FASD without knowing more about her now.

Each child affected by FASD is unique. One parent's story will not at all be your (or your family member's) story, or the story of this child.

I know that every word you are saying is true. I have always wished that I had known my daughter had FASD and I could have helped her more and not just have viewed her as a rebellious, bratty, teenaged kid.

But, tonight I realized that it is a huge blessing that I did not know my daughter had this condition, because I know that I would have been afraid to adopt her. What a shame that would have been. Today, at age 38, my daughter is one of the greatest joys of my life. I could never have a more loving and kind daughter. She lives several hours away and has given us three wonderful grandchildren. She is respectful and calls me several times a week just to chat. Yes, her life is difficult sometimes, and I don't always agree with her choices, but she is a beautiful, talented and capable woman.

We survived the terrible years from 12 to 20, with the suicide attempts, the drug and alcohol abuse, the quitting school, getting into trouble with the law, and the teen pregnancy. Today I can say that it was worth it all.

I do wish I had known when puberty came and like a light switch, she became the poster child for FASD, and we didn't have a clue what was wrong. But as far as knowing before we adopted her? I am glad that we did not know. —Elaine

I do hope that the prospective parents ask questions.

Where was this child diagnosed? What did the diagnosis show? What recommendations were given? What difficulties does this child have now? Can the new parents meet with the team who made the diagnosis? What trauma has this child been exposed to?

As a parent of a child with FASD, I know that the more you (or your family member) know now about FASD, the more you (or they) will be able to help her.

The one resource who helped me the most as a parent is Diane Malbin, MSW. If at least one of the new parents can come to one of Diane's workshops, this would be a valuable recommendation. Her book, "Trying Differently Rather than Harder" is a good start.

—From a mom named Peg


Make Self-Care Important

Where I was December 31st, 2011

I personally really hit "the wall" last Winter, and I decided it was time to make some changes in my own life regarding personal care...My New Year's resolutions this year were:

  1. To get fit; and
  2. To take time out for myself.

Where I am August 7th, 2011

So I started walking in January, at first just 20 minutes a day, and now I have just completed a long walk of 28 miles in seven hours. I have now walked off 40 pounds of "stress fat" since January, and I participated in my first half marathon ... in June, and I am registered to walk ... a full Marathon this October. ... I've also participated in a charity walk...

I've also managed to check off a couple of bucket list items alone the way. I took out a chunk of "old age" savings (I figured that if I didn't do something, I wouldn't be here for my old age, anyway) and took myself on a backpacking adventure (one little backpack for three weeks of travel) to Europe. I left the younger kids with Dad - who refuses to consider any travel - and I simply told the older ones that I would be back in three weeks - and to call 911 for emergencies and to figure out or wait with any lessor issues)...I went to Rome, Germany and England. I found some super-cheap bare-bones flights, and stayed in some very cheap -kind of iffy - hostels, but I had a wonderful time!

Self-Care Is Not Selfish; It's Responsible

I've struggled with feeling all kinds of guilt about being so "selfish" — but I just had a follow-up medical check. The doctor kept saying it was like I took ten years off over the last seven months; my blood pressure is now perfect; and a few other things have significantly improved.

When I read about the many health issues so many of us on this (email) list (for families with loved ones affected by FASD) have had to deal with, and I look back at my own health challenges and then at the needs my children have (the oldest may be 36, but the youngest is only nine), I realize that self-care is not so much being selfish as it is being responsible at this stage (of my life).

I look back now, and the changes seem so simple, so basic. But they weren't! It was really hard for me, both physically and emotionally, to make myself walk even 20 minutes a day when I started this in January. Many days, it was only ten (minutes).

What's ahead

When the next rough spell hits — and it will — I will have to be sure to keep walking and to take a look at my wonderful pictures from this year, and I will know that I have learned some valuable self-care strategies. Even if I can't afford to travel again, I will try and stay healthy in other ways: e.g., I have learned to turn off the cell phone during my walking time. That seems like a little thing; but it was a huge change that has been very good for me. And considering I walk approx 50 miles a week now at 4.5 miles an hour, that is quite a bit of quiet time for me for reflection and prayer as needed.

Lessons Learned

Giving up the cell phone (was so hard): What if the kids need me? What if the school is calling? What if.... etc, etc, etc.

The alternative question was: What if I was dead?

So, looking for the middle ground and resolving that my health was a family priority, I found my way taking one step at a time - literally. The Serenity Prayer is also a big part of my new daily routine; I haven't been lacking in courage, but I have found some new acceptance and hopefully more wisdom.

Once winter comes, the walking time will reduce, but I've resolved to make sure that I still block off time for self-care.

...wishing you well and hoping you also all find ways to include some self care now and then.

— From a mom named Rio


Are there programs for high-functioning young adults with FASD?

In pure, terrified desperation I went to (a resource in my community), which in our town is for (youth with) Down Syndrome. The staff person took pity on me and together we researched all possible programs for high-functioning, slightly disabled 18-25 year-old young adults who were "stuck." There was no one else with FAS, but (my daughter's ) symptoms fit in exactly with (people who had been diagnosed with) Aspergers, (specific and non-specific) learning disabilities, and autism.

(What these individuals have in common is that) they are bright, unmotivated, gentle kids in young adult bodies. When they get jobs, they work as (for example) box boys, storeroom clerks, nursery school helpers and dog washers, and are proud to be contributing to their support.

What we found for our child

(The) program I found for our daughter is called Moving Forward Towards Independence or MF (located in Napa, California)... (H)ere kids start out in a kind of group home until they earn their way up. There are a few programs for severely disabled persons...(which are) closer to home, but my daughter would not be happy thinking that's where she fit.

At MF, they keep the kids busy volunteering at non-profits and going to classes on self esteem, stranger danger, and budgeting, but also painting and guitar playing. Some participate in Special Olympics, and love it. The community is safe and easy to navigate.

(MF is not cheap; however) I figure we would have spent as much on (my daughter's) board and tuition at college. This is her college.

My advice to parents of a child with FASD

It's (never) too early to start planning. If I had sent (our daughter to MF) at 18, I would have saved us all all lot of grief and trauma.

—From a mom named Shelley


When the Extended Family Doesn't Understand

My extended family wants me to treat my child with FASD exactly same as my kids without it. What should I say when they call? Please advise!

You might want to say to (your family member) something like this:

"I need to talk with you about this more, but I can't do it right now"; and set a time. That way you can be prepared with information and (be) in the correct frame of mind to speak with your family member.

At the arranged time, you could present your point of view in a way like the following:

"We adopted (my child with FASD), and we are making every effort to make her feel part of our family. I need your support. Regardless of what (my child's) challenges are now or later in life, she is still part of our family, and my daughter.

As you know, (my child with FASD) was diagnosed with ...   I'm sure you have heard me use that term before. This condition affects our whole family. Living with a family member with FASD is hard, and raising a child with FASD is a special challenge. I need to advocate every day for her that she gets the help she needs and deserves at school so she can reach her full potential, whatever that might be. I need to teach her the skills to deal with life just like (I do for) my other children, but (my child with FASD) learns differently, and often at a slower pace, so I have to be very patient and diligent to help her reach each goal. But my most important job is to accept (my child) as she is and love her.

I get tired and weary; and I could sure use your help. It hurts me greatly when you say that (my child with FASD) is an outcast! She's just a little girl, trying to fit into a world that doesn't make sense to her. She marches to a different drummer..."

Try something along those lines. Put some thought into it before you chat with her (or even write a script and rehearse it beforehand with your spouse or a friend). You might be surprised at the outcome of the conversation. If you are close with your (family member), a letter might work as well.

—From a mom named Jonsteel

Telling Your Child He Has An FASD

I struggled for years with whether or not to tell my adopted son that he has FASD

My son knew, too, that "something was wrong."

I finally told him the truth, not in a moment of anger, but at what felt like the right moment, an afternoon together when he was open, calm and able to hear me. Rather than being devastated, he was grateful to finally know the truth.

Once the truth is out in the open, your (child) may become more willing to work on the known deficits that FASD causes. Like the work on executive function that (my son) currently hates. Face it, none of us like to work on what is most difficult to us.

The upside to (a) diagnosis is that, if (your child) is prepared to put in the effort, many (individuals) with FASD have meaningful work and are married.

The difference between knowing and not knowing the truth about FASD, is that without the truth, your (child) is stumbling in the dark, choosing alcohol and drugs, disliking himself and fearing the worst.

  • The truth is that what was done to (your child) before he was born (was something that your child) didn't cause; nor does he deserve that damage.
  • The truth is that (your child) is a good person and a loving (son or daughter) and that he is surrounded by those who love and support him.
  • The truth is that, without knowing the truth, he has been following in his birth mother's footsteps and that, unless he stops, he can become responsible for another child being born with the same (or more of) the challenges he faces.

What kind of (parent) would (your child) like to be?

(Your child) didn't cause any of this, but the truth is that unless he squarely faces the unfair challenges life has placed before him, he can ruin his life, or become responsible for FASD happening to another baby.

If (your child) faces his challenges, he can become an even better person than he is now and a great human being, and a potential (parent that) a future (son or daughter) would be proud of.

Life without hope, lived in fear, really is a living hell.

Yes, the truth can set you free. We all deserve to be gently, kindly, lovingly told the truth. That's what I think. — From a mom named Shirley

Finding a Residential Boarding School or Treatment Center

My son went to an RTC (residential treatment center) just this past February, but I had been looking for one for him over the last year as (his behavior) became more and more out of control.

I have not read the book, Help at Any Cost: How the Troubled-Teen Industry Cons Parents and Hurts Kids, but I took a look on Amazon.com and read a fair number of the reviews. It made me want to cry. I fully believe that a lot of these treatment centers are awful places where kids are not helped and, in fact, are traumatized even further.

Obviously, you've got to do your homework in checking them out. But, there are good places too that CAN help your child. Nobody wants to send their child away, but sometimes you have to admit that you just aren't helping your child. In our case, the violence and threat of violence in our home was becoming too much for us to handle.

Another resource I found (online) was: Best Christian Boarding Schools. I took a look and was very sad to see (an RTC listed there) which (I had learned) is a BAD place, not one where you should send your child. Don't forget sometimes places that are "Christian" or "religious" will be fairly traditional (rigid), and that can mean punitive and mean. No good school should need to resort to being abusive.

Suggestions

  • Ask for referrals for places, and ask lots of questions.
  • Remember, you cannot take the website or the director of the center at face value; they are trying to "sell" you on their program.
  • Pretty pictures of smiling kids do not make it good.
  • Hire an educational consultant. Yes, it is another cost, but (it provides) invaluable advice. Get references for this person, too.
  • Request that the RTC give you a list of parents of former students that you can contact. Ask them questions like: what they liked, didn't like, what has happened to their child since they left the program, would they send them there again. This should give you good insight.
  • Schools should have a history of making fundamental changes in the kids, helping them to make better choices, learn self-control, etc It cannot be just a place where, if the kid follows the rules and toes the line, (because eventually) they will be released, with no change in their thinking.

Additional Resources

  • A book, The Parallel Process, by Krissy Pozatek. I have not read it, but several parents I know have. Krissy has worked at a couple of wilderness programs, and the book is supposed to be an excellent support for the families. See http://www.parallel-process.com
  • http://www.adoptive.org. This is a non-profit resource, I think, just for adoptive families, that may be able to help families with funding for RTC. I think (this service) is brand new though, so they may not have much of a track record yet.

Hope this is useful information.

From a mom named Lorraine


Helping Your Loved One After Residential Treatment Ends

I have had two (children with FASD) in placement for extreme behaviors and neither were perfect.

(But) at the time, it was the best for the family. I worked closely with both facilities, did staff training and offering suggestions whenever possible. But as we all know, staff changes frequently so training seemed to be needed monthly.

But the biggest issue...is the transition out of these facilities, either to adult living or back home. This is where there needs to be so much work done. Having a doctor and therapist appointment is not enough transition home.

What about the 24/7 supervision that is needed to maintain our kids?

There is nowhere that I know of that does a good job at this, because either the services are not available or there are long waiting lists. I know because of our situation...once you are in a system, like mental health, it is so hard to move put of it into the developmental system. For my children, mental health was not the best system. (B)ehavioral interventions...were not a way for my kids to learn how to behavior since their behavior was brain damaged basic and not willful.

What I did was invite myself to statewide meetings...involved with mental Heath and developmental disabilities.

(M)ost of the meetings are open to the public. The problem was finding out when they were held. But once on a email list, etc, I knew of many different meetings.

Look to the parents in your area for answers and help with finding the services that may work for you.

They will know the ins and outs of the community or state and how to get around the systems to get your child what they need. Find a champion who know what they are talking about, who has come from the field, who can get information to you. Remember that many of the state personnel go to meeting after meeting.

I also found that working with an agency within my community helped when we were in crisis. It made things easier to move my child into care when I knew what to expect, and some of the staff knew me and what I stood for.

From a mom named Dianne


Model Letter to 12-Step Based Treatment Provider

Introduction to the sample message requesting FASD-appropriate accommodations in a 12-step treatment program

Here is the email I wrote to the Clinical Director of the __________ Outpatient Substance Abuse Treatment Center and the individual therapist assigned to my daughter. (I sent it) a week in advance of our meeting to discuss these requests for accommodations.

Some of the things requested would apply to all situations (like training for all staff); others are specific to my daughter and her particular issues and place in life right now. For example, items #2, #4 and #7 focus on my daughter’s particular challenges...your (loved one with FASD) may have other arenas in which different changes in the program structure would be more effective and helpful...Items #3 and #8 relate specifically to the fact that my daughter is eligible for Medicaid/Medicare services; and in Oregon, where I live, that means that she has...a case manager who accompanied me to the meeting where the accommodations were discussed and allocates the money to the treatment provider (and supervises her as well) and a...‘helper person’. These accommodations would probably not be relevant in other situations where these services are not in place and/or where there is court involvement.

The accompanying bibliography, which I sent to them at their request, is available as a download, below. It was at their request that I compiled as comprehensive a bibliography/resource list as I did. You can check out the various links, and perhaps choose those articles and links that you think are the most helpful in your situation.

Note: I tried very hard to present what I gave to the treatment center in the bibliography AND in my request for accommodations for my daughter in as collaborative a way as I could. At one point I came across a quote which essentially said that if a person with FASD did not succeed in treatment, it was the treatment center that had the problem. I RESTRAINED MYSELF from including that quote, much as I loved it, out of a concern that if I came across as too adversarial, I would lose the battle before I even got started. However, some of the articles in the section about adaptations that treatment centers need to  better serve folks with FASD take a pretty strong stance -- to their credit. Use at your discretion.


Example message to clinical director of 12-step based treatment program

From: (name/email address)
Sent: (Date)
To: (email/s of Recipient/s)
Subject: Re: proposed accommodations to be discussed...

I would like to emphasize, as I tried to point out in the phone call (setting up the meeting), that I hope what I have written will be a starting point for discussion of how best to intertwine what we know about (my child's) brain injuries (and those of others like her) with the nature of your program and 12-step work. Because of  (individual therapist’s) experience working with (my child), I especially am looking for (their) input on which arenas were the most problematic for (my child) and how they might be addressed better, now using this FASD lens.

    1. Training for all staff in FASD
      Changes in group structure: written materials should be worded concretely, not abstractly; verbal materials should be presented in written as well as verbal form, with checking for understanding in ways that don’t put (my daughter) on the spot. Generally speaking, groups that focus on abstract concepts will not be helpful, and reformatting presentation of materials with the understanding that ‘learning from the past’ and generalizing from experiences of others to her own are the most difficult areas for her. (My daughter) has said that hearing about the successes of others is helpful; but hearing about the problems of others she does not find helpful, because of difficulties with generalizing from their experiences to her own life. Be sure that the group leader(s) understand the effects of (my daughter's) auditory processing disorder on her group participation and her ability to fully understand what is going on in group, and that therefore there are ways in place (as above) to address/accommodate this.
    1. Coordination of work in the program with her (helper) and (case manager) through (name of case manager's service agency). (My daughter) did not have these services in place before; and now that they are in place, they can powerfully augment program services. (Name of case manager) can speak more to this
    1. Development of a plan to address (my daughter's) chronic... no-shows and lateness. (They are) issues overall in her life that she needs to improve in... (Having) her (name of helper) bring her to some appointments, but not to all (may be) one accommodation. Making schedule changes as infrequently as possible is very helpful.
    1. Pair (my child) with a mentor to build in a peer-validated involvement in (the 12-step program) and also to help her visualize how long-term recovery looks. Understand that (the 12-step program) will provide her a solid community after she is not longer in the program, but she will not be able to get to (the 12-step program) meetings in any regular fashion without a mentor.
    1. The longer the time (my child) can spend in the program, with the most repetition of concepts, is most helpful. The core of her successful learning is REPEAT, REPEAT, REPEAT. However, this needs to be done in a way that she does not feel she is being ‘punished’ by asking her to stay in the program longer and that she is just being forced to ‘repeat a grade’; so, content needs to be changed enough to be different but still basically covering the same concepts. Perhaps she can move into a mentor role for others as she stays longer?
    1. Incorporation of the perspective of (my child's) ...individual therapist in adding in those accommodations and programmatic modifications that would be most helpful... Allowing her to continue with the same therapist with whom she feels a positive connection was a very appreciated accommodation that already has occurred.
  1. Continue to proactively work with (my child's) (case manager) and parent(s) to problem-solve (issues) as they arise and before they become large and jeopardize her overall success in the program.

Of course, we also want to incorporate the perspective of you, (name of Clinical Director) and  (name of individual therapist), in terms of thinking not just of this particular client but others with similar issues that have come through the program and what programmatic changes and accommodation would have increased their success, especially in light of the (FASD) readings I sent.

I also want to acknowledge that your openness to (accepting the unique challenges of FASD) and your willingness to join with us in this meeting is one huge accommodation ALREADY.

Looking forward to our meeting tomorrow. I know we have a very limited time so (name of helper) and I will be thinking about how to be efficient with our time. Your perspective on how we can best get through this agenda in the time we have is of course helpful as well.

After the meeting

At the meeting, they agreed (in theory at least) to all the requests except for the staff training which they said had to be addressed by their Executive Committee.

I am cautiously optimistic that the changes my daughter needs will be implemented AND that this discussion will open their eyes not only for my daughter but also for others living with FASD (diagnosed and not diagnosed) and those coming through the program who may not have someone able to advocate for them.

Anyway, hopefully you can take some of this and adapt it to your situation.

Written by S, a parent in Oregon


One Perspective on Therapy and FASD

Last year (my daughter) decided she wanted to return to a therapist to gain skill building in anger management - great idea. She asked me to join her as her translator if needed. (During each session) I sat on the chair or couch away from her, and only interjected when she needed a clarification until she felt safe with the communication with the therapist. This was not my decision: she asked.

In one session the therapist was talking about the waves of emotions. (We live in Minnesota, with many lakes of very small waves.) The therapist, who is skilled in (counseling people with developmental disabilities) said, "Emotions are like waves: you must ride them up and then ride them down. They are always moving and you will not stay in one state too long." My daughter nodded in agreement, so I didn't say anything.

In the car I asked my daughter, "(Your counselor) had some great ideas about emotions today, didn't she?" To which (she) replied, "Mom, why does she want me to ride in a wagon, and not stay in Minnesota?"

And we (parents) wonder why (communication with a child with FASD) gets crazy!

In session two, when (the therapist) asked, "Who do you get the most angry at?", (my daughter)... said, "Mom; we fight all the time." The therapist looked at me, and I remained quiet. I was the translator and this was not my therapy session. I (assumed that) the therapist would expand (on this) issue in later sessions. (On the date of session three), I had a meeting; so (my daughter) had to go herself. (She let me know that) she was angry (because she felt that) I was abandoning her, but I assured her she could do it by herself. She came back (from the session) saying, "I thought I was angry at you when I went into therapy, (and) now I am even angrier at you. You are bipolar and need your own therapy!" Note: (Anyone who has) seen me (handle my daughter) and been with us when she says I am yelling at her... would have laughed (at this characterization).

(My daughter completed) about seven sessions. (She) came to me one day and said, "Mom, I wanted skills I could use to help manage myself when I get angry. (This therapy) is making me hate you. Hate our family. I am angrier all the time. I have no new skills. I need to quit." I asked if she was sure of it and she said, "Yes, maybe we can find a place where I learn better ideas. I want to not be so mean to you anymore."

Did therapy do that? Or did she come to terms with it on her own? I don't know, but (my daughter) definitely has an opinion on therapists at this time, and at 26 she still needs anger management work.

From a mom named Jodee


Residential Treatment: Use Caution

Residential treatment programs for individuals with FASD are often quite problematic

(This) is true for drug treatment as well. And, NO our kids are not similar to those with "behavioral problems". The difficulties they experience, with impulsiveness, judgment, prediction, learning from (one) instance to another, recall, getting stuck, and understanding the link between actions and consequences, are not learned. The...challenges are brain based. Any treatment program that does not understand the above is not only likely to fail; it is also likely to inflict further psychological problems on our kids by disciplining them for their very disability. My daughter went to residential treatment and the harm done is still apparent years later.

...Dan Dubovsky (FASD Center for Excellence) and Pam Gillen (University of Colorado) are writing a manual for residential treatment programs with specific accommodations and changes needed in the treatment approach for individuals with FASD. (Note: Dubovsky is the FASD specialist for the SAMHSA FASD Center for Excellence. Dr. Pamela Gillen is Program Director, Colorado Fetal Alcohol and Other Prenatal Substance Abuse Prevention Program.

Also, the research on substance abuse treatment for those affected by FASD is showing poor results for the traditional approach; i.e., abstinence only. (Abstinence) does not take into consideration specific needs based on the neurodevelopmental profile of FASD. Instead, look at another approach to treatment called Harm Reduction.

So, our kids can look like those with "behavioral difficulties". ODD (oppositional defiance disorder), for instance, is a term often used with our kids. But really, when I have looked more closely with my daughter, who was diagnosed with ODD, the problem has not been defiance. Rather, her difficulties with sensory overload, "shifting gears", doing more than one thing at once, and processing language end up looking like defiance, but are not.

About 6 months ago, I asked her about taking a bus. She reared back and yelled, quite loudly, "NO, I will not take a bus". Sounds defiant, right? Wrong. Instead of getting mad, I asked her what was hard for her about taking the bus. She then went on to explain how the wheels screech in her ears, the smells make her nauseous, the sound of talking sound like thunder, and how she loses all sense of where she started and where she is going. Turns out she has a full blown panic attack on buses. By the time she finished explaining what happens, I thought, darn, I wouldn't take the bus either. So she was not defiant. I have found that if I question my daughter or, better, step back, defiance turns out to be brain based and not ODD in any sense.

Understanding brain-based behavior a challenge for residential treatment programs

My daughter went to residential treatment when she was a teen. Yes, the program was quite behavioral. And, she did well with the structure. But, the inflexibility of discipline for infractions without understanding the neurological basis of her behavior was disastrous! My daughter ended up being (psychologically) abused by the very treatment, with scars that lasted for years. The staff did not get her and did not understand what was based on her neurology and what was choice. When she became stuck and had difficulty making transitions, she was disciplined. When she reacted negatively due to overstimulation, she was disciplined. Most of the therapy was group based, which was overstimuulating to her, and it was difficult for her to process what was being said. That, and the problems of the other kids overwhelmed her. Again, she was disciplined. When infractions occurred, she was asked to write about (them). Privileges were taken from her for brain-based difficulties. And, guilt was placed on her over and over. She ended up being damaged by yet another approach that disciplined her for her very disability, a great danger for behaviorally-based programs. Remember, behavioral programs run on the basic premise that problematic behaviors are learned and can be unlearned with consequences. Oh, oops our kids have difficulty with the action-consequence link. In fact, Dan Dubovsky makes clear that any residential treatment program has to focus on accommodations for what is brain-based; his manual has specific suggestions.

Then too, many residential treatment programs will not understand the needs of individuals with FASD when planning for being an outpatient. Our kids do well with tight structure. What happens when the structure is removed and the person is back in the real world of temptations? What will be needed in outpatient planning for a network of support and perhaps a more flexible approach than abstinence only.

From a mom named Peg

Online Resources for Teens and Adults With FASD

There is a group for individuals affected by FASD on Facebook called FLYING WITH BROKEN WINGS and you can see it here: . To join the group, which is private, you must be a current Facebook subscriber.

See Charles Haire's site at FASSurvival.com. In his words, the site is designed to be a place of resource for those individuals living with a brain injury and FAS (fetal alcohol syndrome).  

This  web site has information on an email list for teens and young adults with FASD: http://www.fasdlane.com/ 

The site also lists other resources for persons living with FAS or any other type of FASD.

— in response to a question from a mom in San Bernardino County, CA.

Anxiety in Public Places

How should parents, caregivers, spouses, or others who play the role of  "external brains" help our loved ones with FASD who experience disorientation in space or time, sensory overload, memory and organization problems, and the understandable anxiety these can cause in stores and other stimulation-rich public spaces, when we cannot be with them?

On a Facebook group used by many adults with FASD, a writer asked for comments about this problem, summarized below.

"If you have FAS, do you fear going out in public? I feel trapped in my apartment sometimes. I get scared, overwhelmed and then I give up. I get lost in the store. I am not good with understanding math and percentages, so I don't know how to figure out sales. Loud noises make me nervous. I don't like large crowds of people if I am not with someone I know. I get panicky and just leave. I am also an impulse spender, and I get frustrated…

I have a hard time figuring out what I need, and then I end up buying something I can't use. Sometimes I don't buy anything because in the back of my mind I am wondering if it's an impulse or not. I am always needing an external brain to help me. If I am alone the fear can become a physical pain. I really try but I get physically ill. 

I just don't anywhere alone. I get lost easily if I have to take a bus. I try to go with my external brain, but I only have one at the moment and need more, but those are hard to find…"

The other readers online at the time who have FASD also acknowledged having this problem, and said it was common. One of them said (summary):

"I really try hard to never go anywhere by myself. Yesterday at a store with my external brain someone 'rammed me' (exact quote) and scared me. My external brain asked me what was wrong; and after I explained they then stood between me and the person who rammed me. I was scared for the rest of the evening."

Here is a thoughtful response to the above question:

It's all about sensory overload.

Our daughter has all these problems to some degree. Loud noises and crowds frighten her, but she loves open-air rock concerts, as long as there is space between her and the other people.

We have solved the problem she experiences with crowds, traveling to unfamiliar places, and noisy atmospheres because she lives (apart from her dad and me) in a small, easy-to-negotiate town. When she feels overstimulated, she is minutes away from a calm and quiet environment she can walk to.

My daughter plugs in her earphones when going anywhere, even in a car (with noises blocked out or with the radio playing).  When she and I are together, I have to wave to her to take one out so we can have a conversation. I think she does this to block external information from traffic noises and from other stressful sensory input.

Once a week, a woman my husband and I pay as a part-time aide shops for groceries with my daughter. Her role is to help my daughter choose healthy foods and needed household items, like toilet paper and shampoo. As her parents, we will always make sure our daughter has someone to help her with this task.  And yes, one can ask salespeople for help in stores. My daughter has seen me do this; and she will do it if she gets frustrated enough, trying to find something.

Give them wings.

It's very hard, as parents, to step back and let our adult children with FASD flounder a bit as they learn to care for themselves.

A hired helper a few hours a week may help the adult child with FASD bridge the gap between total dependence and independence. My daughter may never be fully independent, but I believe it's best if she is allowed to do as much as she can do for herself.
From a mom named Shelley


Getting Services Via Other Diagnoses

From a recent post to the Olderfas email discussion group:

My FASD-affected daughter, who is is almost 26 years old will not qualify for DD (developmental disability) services; she is "high functioning", with an IQ of 115. She is out there, wanting to do what other 26-year-olds do. Live a life of her own, Live away from mom. And, she has worked before, full-time and done well. But, she cannot find work now. She needs help from the Dept. of Vocational Rehabilitation (DVR).

The DVR told me that she must get to their office, and attend a group orientation at 8:30 in the morning. She has lots of difficulty waking up and becoming clear-headed. Then, following the orientation, she must fill out a 14-page application. She attended such an orientation when she lived in my state, and came out telling me, "You know me, mom; I have Swiss-cheese brain. I get every third word they said."

My daughter's Food Assistance was stopped because she cannot get to the state Employment office, to attend a full-day program to look for a job for 7 1/2 hours on the computer. She would experience sensory overload, and then she would "shut down." DVR could give her a letter to Social Services so she can keep Food Assistance, but she has to get to that early orientation, and then keep a second appointment, also in the morning, to meet with a counselor.

My daughter cannot drive safely. Using public buses causes her so much stress and sensory overload she cannot use them. All of her friends work and cannot take her to appointments. She does not have money for taxis; and, she does not qualify for transportation services for mobility-impaired persons. I must work, and even if she lived with or near me, there is no way I could get her to all these appointments without help. I would lose my job.

How does one get past the rules of agencies that are supposed to help those with disabilities? My daughter cannot get services because her condition is keeping her from getting to the agencies that provide the services on her own, and she has no one she can rely on to take her there as required. That, and the 8:30 a.m. appointments, no exceptions allowed!

What can I do to help her? She is hungry, needs a safe place to live, and she wants to work.


A response:

Have you checked in with the National Alliance on Mental Illness (NAMI) in the state where your daughter lives, or with any resources for persons with traumatic brain injury (TBI) there? I wonder if your daughter's FASD needs to be treated (because of what resources are available) as if it were TBI or a chronic mental illness. Whatever diagnostic category where you can find a supportive community and links to experts who treat conditions which affects memory and other issues (sensory, psychological, etc. around independent functioning.

I'm thinking perhaps somewhere in these communities there may be external brains that can help your daughter get to where she needs to go so she can qualify for services she needs in order for her to find an appropriate job.

See:
http://nami.org
http://www.brainandspinalcord.org/support-groups/brain-injury/


Good Ideas From People With Other Types of Neuro-Behavioral Conditions

Because the damage that causes FASD is based in the brain and nervous system, the behaviors commonly shown by people affected by FASD may also be characteristics of other types of neuro-behavioral (NB) conditions.

  • Some of these conditions are considered to be developmental, caused by birth defects or caused during very early childhood. These include cerebral palsy, attention deficit disorders, and Autism Spectrum Disorders (ASD).
  • Some conditions are seen later in life, from late childhood through adulthood. These conditions include some types of seizure disorders (epilepsy), traumatic brain injury (TBI), or neurological diseases such as progressive dementia (for example, Alzheimer's).
  • Some conditions are associated with environmental causes, such as Reactive Attachment Disorder (RAD) or Post-Traumatic Stress Disorder (PTSD).
  • Some conditions are likely caused by an interaction between organic or genetic influences and as-yet unknown environmental influences, such as types of psychiatric disorders.

This page contains links found on web sites addressing these NB conditions; they contain information that may be helpful for adults with FASD (and their loved ones). This page will be updated as needed.

9 Things Not to Say to Someone with a Brain Injury  Just as relevant to adults with FASD!
Letter to My Wife's Family. A long-time caregiver writes an honest plea for help and support from the extended family about the "costs" of long-term caregiving of an individual with NB issues.
Why People with TBI Need a "Resource Facilitator" Adults with FASD often need someone who can coordinate community and other resources. explain to professional resources key facts about their challenges. 
Educating Providers in Outside Programs About Traumatic Brain Injury  Educating community and other resources about FASD's "invisible" challenges that may not respond "as expected" to the program structure or features is a problem common to people who have TBI-related problems. 
How to Cope With Executive Function Problems


Jan's Observation

I am a biological mother. My son was diagnosed with pFAS (partial FAS), which is what it was called 10 years ago, when he was 20 years old.

We have been to hell and back raising him.

His teens were horrific. I sobered up when he was 13; and, unbeknownst to me at the time, he was a crack addict. Imagine my shock, horror and shame -- I didn't even think he played with matches. He hated that I quit drinking, and said he liked it better before, when there were no rules.

During his teens we endured eviction, death threats, juvie, murderous rage, gangs, drug dealers with guns showing up at my door; and, worst of all, there were times he wouldn't come home for days at a time, and I would think he was dead in a ditch somewhere.

I did lots of things wrong, said "yes" lots when I wanted to say "no", and sometimes I question who raised who.

Important for me has been learning the fine line between enabling and advocacy, and trying to let him learn from consequences, which has been excruciating for me. Overall, I maintained I always wanted to have a good relationship with my son, and have tried to keep the lines of communication open.

Growing up, he always was saying he was stupid. I would say to him, "No, your brain works different than other people" — not even realizing at the time why. When he received the diagnosis of FAS, I shouted, "Hooray!" I asked myself why I was happy, but I was. He put his head in my lap and cried. It was the missing piece to the puzzle.

Today, that boy is a young man of 33. Yes, he still struggles on a day-to-day basis, but I am so proud of him. He is a great guy, has a wonderful sense of humor, is responsible, has a huge (albeit naive) heart, and lives with a lovely partner who is his "external brain" and helps to keep order in his life.

I think an important message to relay is that there is lots of hope for these kids, something nobody ever told me, and something I can now pass on to others.

Do not, I repeat, do not underestimate the power of love. You folks raising these kids, even when you think you are screwing up, are saving their lives.

Jan wrote this message to the faslink email discussion group in 2012.


Structure & Routine

I have FASD. Even now, at 29, I find that I need routine: (I need to) get up every day, eat, do chores, go to work.

Yes, I am a high-functioning person with FASD; but change and new things really are hard on me. (For example) I just moved into a new place with my boyfriend. I got really scared, nervous, teary-eyed, as it was all new... chaos, boxes, furniture everywhere... (It was) all fixable, but no routine or structure (put) my mind in chaos!

Growing up, I had to have structure and routine, or I would act up, or shut myself off. Out of my six siblings (we all have FASD, with me being the highest functioning), I have learned we all do/learn/cope with things differently. But structure and routine is a must (for all off us)!

I do not have a day-to-day checklist. But on days I have errands to do, I HAVE to make a list. Right now I have a list to: phone cable company, bank, let people know I have moved and change of numbers....etc. (I am awesome at procrastinating!) I need to set up the printer to print out the hydro bill, to pay it...

If my list is too long I get overwhelmed and don't do it...which only hurts me in the long run.

The best place I have ever had for checklists was (to post it) by the light-switch or door of every room. (For example) 1. Make bed. 2. Put dirty clothes in hamper. 3. Bring dishes to kitchen...stuff I need to do every day and will see it.

(It needs to be easy to see, too)...neon paper and black printing, not hand writing!

Lists need to be simple; the fewer words, the better. Like: "MAKE Bed..." Not "Bring sheets up to top, tuck edges in, fluff pillows, fold sheet at top. pull quilt up, over the pillows, tuck everything in..." (That's) way too confusing.

Pick your battles. Let (the person with FASD) make (their checklists, or straighten their room, or whatever) they way they think looks good. As long as (the bed) looks made and they made an effort, compliment them; (for instance) "Wow! (Your) bed looks nice."

LS shared this information in comments to a group on Facebook.com, called "Roots to Wings Fetal Alcohol Spectrum Disorder support group", in 2012

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