Archive for the ‘2013’ Category




I have not posted in a while. Living the day to day survival with Deserai and losing my son Jake, has been about all I can handle.

Jake’s story is at:

We have walked through fire after fire this year. I myself have had serious health problems and went through hell with stuff last summer. After that, I almost went deaf with an ear problem and it was pretty scary and horrendous! While dealing with being deaf, my son died.

The past two months have been pretty challenging with Desi. I will give you a quick summary. She has been in Netcare (emergency mental health facility) for a few weeks, for raging and threatening suicide. She then met a girl at the hospital that she tried living with and that turned out to be quite a scary adventure also.

She has been nothing short of a walking stick of dynamite,  since she lost her job.

She came home after the friend trauma. She was grateful for a few days to be home safe. Then it started all over again.  Challenge after challenge with her anger.

We are on home row with disability, waiting for court, and she lost her job in December all due to her inability to manage her anger.

Since losing her job, I am convinced that right now she cannot hold a job. She lost her job because of her anger and she triangulated the entire company.  Her boss, a friend of mine, could not take it any more. She did the work. I got her there on time, every work shift, but her emotional instability is beyond dangerous to herself and others.

After losing her job, was when things got worse, because she now had no resource for money and she has been feeling like a total failure.

So  now on to yesterday. I almost lost my daughter. She did a serious, no nonsense, suicide attempt, yesterday.

How can I explain to you in a calm manner what happened after just finding my son dead three months ago? I cannot. So bear with me.

We were doing housework together and we were laughing at pillow cases.  She asked for her next chore and I told her my room needed vacuuming. I am going to tell you this story from my side first and her side second.

I put the vacuum together and went down stairs to tell her. She was stretched out straight on her face, on the floor. I thought she was resting. I told her about the vacuum three times and she didn’t answer me. At that very moment I KNEW something was wrong. Fear gripped my soul. I had just seen this three months ago when I walked into Jake’s apartment and yelled at him and no answer.

I went over to her and pushed on her shoulder and called her name. Her eyes were going everywhere, but half open. IT WAS  FINDING MY SON ALL OVER AGAIN!!!!!!!!!!   I STARTED SCREAMING AT HER AND CALLING MIKE AT THE SAME TIME TO CALL 911.  I WAS YELLING OVER AND OVER!!!!!! DESI!!!!!!!!!!!!!!!!!!! DESI!!!!!!!!!!!!!  TALK TO ME!!!!!!!!!!

I was getting so frantic. At this point I thought maybe she was having a seizure. My son died from a seizure. DO YOU KNOW HOW MUCH THIS SCARED ME?????????  I was having a fit over how long it was taking the ambulance to get  there.  I started praying over her and just praying and praying and praying.  God you have to save my child. Lord wake her up. I prayed until the ambulance showed up and at that point I started to sob.  I was totally apart now.

I told them I thought  she was having a seizure. They said no, it looks like she took something. WHAT THE HELL??????????????

WHY????? What could she have taken?????  WHAT IS GOING ON???????????   WHY IS SHE DOING THIS?????

Oh Lord Jesus, I didn’t know if she was going to live or not. The med guys got her awake enough to tell them she took welbutrin, but she didn’t know how much.  I found the bottle but could not prove how much because I add new scripts into old scripts, when they arrive. That keeps the numbers of bottles down.

Desi whispered something to me. I asked her loudly WHAT?  She said “note”. She looked in the direction at where she had been laying.  My eyes traveled there too and sure enough, there was a crumpled piece of paper on the floor.

I picked it up and read it to every one. It was a suicide note.  She was sorry to everyone, but no reason why she did this.

So now we move into fast mode. We go to the emergency room. I am sobbing the whole way. Then I realize that the ambulance’s lights are not on and no sirene. So I ask the guy, is my daughter going to LIVE?  He said yes, this medication doesn’t kill people. It will make them sick for a while but not kill.

I know I asked this question before this, but didn’t believe them. But now I do. Now I want to kill my daughter for this!!!!!  I am like, you  sent me through Jake’s death all over again.  WHY????????  Flipping out here at the entire world who will not understand FASD and will not listen to me when I try to to educate and will not help my daughter get medications for her anger etc, because they THINK she can make choices on her own.

YOU ROTTEN PEOPLE! You are all ROTTEN CREEPS who won’t learn about FASD and because of that, I am living my son’s death all over again. I am blaming them all for what my daughter did.

I asked for some medications that would help calm her down at her last psych apt. and this wise ass doctor said no. She raised her antidepressant instead and spent the entire half hour telling Desi that she needed to start making better choices.

UM, YOU STUPID, STUPID lady! My daughter has bipolar and a brain that doesn’t process meds like normal people and you double her antidepressant which can send her into a manic episode, or make her suicidal, and you succeeded!!!!!! You crazy (can’t say it.)!!!!   You get it people??? FOR so many freakin years I have been trying to get understanding from people, for my daughter, and I have been ignored, yelled at, told that my daughter’s problems are ME, and more.

Well now you are all going to listen to me because I am not going through this in my life, EVER AGAIN!!!!!! Do you know what it is like to feel the body of your lifeless child?????????  Have you ever hugged your child;s stiff body?????

I have and it is the most devastating thing a parent can go through in this life, and once again I was pushing and moving a lifeless body!!!!!!!!  NOT ONE MORE FREAKIN TIME am I ever going through this again. If I have to spoon feed her doctors FASD and force them to swallow it, they are going to listen.

My daughter has a traumatic brain injury. She  is angry ALL the time. She didn’t choose this to happen to her, but it did and someone is going to find a medication that will help her calm down, so that her life can be saved.

My daughter is talented, smart, so much fun when she is not angry, but she has lost almost every friend in the world because she cannot manage her anger.

Listen up world. We cannot shove FASD under a rug any longer. It is killing our kids. It is jailing them. It is crippling them. It is leaving them helpless and struggling to live.

You don’t have a choice any more because I am not going to shut up and you can no longer hurt me with your accusations any more.  You can’t blame me. You can’t ignore this and you are going to help my child.

Last week my very vulnerable and naive daughter went to the home of two men. She thought she was going to live there happily. I knew different. I knew she was in danger. Sure enough the next day she showed back up at home with a story that blew my heart up. They had forced her at gun point and made her snort cocaine. Desi has NEVER touched a drug in her life, other then her medications.  This was very violating to her, because of her strong belief against drugs.

The next thing that happened was the older man tried to rape her.  Enough of that story. She got away and was not raped. Of course this was a big part of what all fell into place yesterday when she tried to take her life.

Now on to Desi’s side.:

I came home to my mom’s but I didn’t want to be there. I am not really happy anywhere, but I feel like a total failure to my family and myself, right now. I lost my job and I can’t work because mom is trying to get disability for me.

I have no money to help myself with anything. (her hair is falling out from using glue and hair weave, this is hurting her heart greatly).

That morning, I decided to leave home again. I packed two bags, but sat down and realized. I have no where to go.

I have been telling myself for months now that one day I am going to take my life. I can’t live with this failure and this anger.  I have hurt so many people and lost so many friends.  I am alone with my pain.

I have to kill myself to get away from this pain. There is no other way.

So after I realized I had no where to go, I decided today was the day. I would do it. I took lots of welbutrin (Desi has no understanding of what drugs can kill and what can’t).

Then I just did my work, waiting for it to happen.  I was upstairs with my mom doing pillow cases when I felt it happening.  So I went downstairs, grabbed my note, shut my phone off and laid on the floor. I knew I was going to be dying now.

When mom came to me, I could hear her some and some not. I was in and out.  But even though I could talk some, I didn’t want her to know what I did. I just wanted it to happen. I wanted to die.

Back to MOM.  Watch out world. Desi is going to get help now,  and you haven’t heard the last of us yet. LISTEN!

FASD is serious!

Today Desi is able to talk. She is still very shaky, but she has her mind. She knows that she needs help medically for her anger.

I had asked her psych last week for Clonidine to help her calm down and got told no. She said she had to try the antidepressant first. Desi said today: “I bet I get it now mom!” OMG! I laughed. I bet she does!

Lord Jesus thank you so much for keeping my daughter for me. Your angels are strong. I have always asked for the strongest ones for Desi and you gave them to me.

Don’t let them ever leave her and please Lord, Use a mallet over the head of people who need to listen. Thank you.

Thank you so much that I did not lose  my Desi. I love her so much and I love you Lord. You are Awesome!




My goodness! It is difficult at best lately to keep up with my own life.

I am 58, have raised nine children and deal with some health issues.

But I am responsible for four people really. Well my hubby is included in that too, but I don’t do his job for him. lol.

I just keep his appointments and manage his money.

 I do all that for Jon and Desi also.

Well Desi has a free psychiatrist that she currently sees, as she has no insurance. We are forever grateful that we have this doctor.  However it requires that she goes to two counseling appointments per month to see the doctor.

So this adds up to three doctors apts. per month just to keep her meds.  

In the beginning we got things mixed up and she got kicked out of the practice because she was a no show for an appointment.

In an amazing miracle, we got things straight and got back in.

Well her next appointment was today. She rarely works days so I didn’t tell her job about her appointments.

BIG GOOF on my part!  She got scheduled for work today. So I had to call and reschedule her councilor apt.  

UM, not giving 24 hours notice is a  SECOND NO SHOW!


This is my daughter’s psychiatrist and the meds that keep her ALIVE!

My mistake and not Desi’s, as Desi can’t manage any of this.  WOW I dropped the ball. Now she only has one strike left and BOOM!

I rather hate walking on thin ice like that.  No more mistake room for ME!

You better believe that I will be giving her appointments to her job from now on.

But here is what got me the worst. I told this man that my almost 19 year old daughter has Fetal Alcohol Syndrome and severe memory issues.  I asked if there was ANY grace?

He said, well she manages a schedule to go to work, she can manage this.

NO NO NO! She doesn’t manage a schedule to go to work!  I DO!  I write her schedule, on MY calendar, and I get her up in time to go to work. I DO IT!

  I told him, this is MY FAULT.  He didn’t believe me.

I hung up once again with that heavy feeling of heart that others don’t understand my daughter.  It hurts me every time I run into that. I guess the real deal here  is that I have to become the “someone” who GETS the rest of the world. I need to “GET” that the world doesn’t understand my kids.

I need to GET THEM and my children.  


Oh Lord give me a strong heart  to be “not understood” for however long it takes in this world.

Help me be the DARN BEST external brain that my kids need.

You are  “MY” external brain God.  You and my Ipad, lol.

So please don’t let me mess up?  My daughter’s life depends on it!


Terry Quinn



me hair


Today is one of those days of frustration in the  capacity of my unpaid, usually unappreciated, JOB TITLE, EXTERIOR BRAIN!

Now I know that God has this plan for my life, and I know that there are huge blessings in my life, so I really don’t have the right to complain to God about my life. Do I?

Oh gosh, sometimes I just feel the need to vent out my pain and then I am able to let it go. It is healing. So here I am sitting here with my vent!

Our adult kids with FASD have to have interdependence to make their lives successful. How much interdependence is something that many of us are still sorting out.

Here is what I find so far, though. My 18 year old daughter is absolutely incapable of organizing her life on her own.  Now honestly, I do this daily, prompt her all day long, and most of the time it is rather like normal. I mean if you have a job to do, it might feel boring, but you just do the job and do it with your mind in some other peaceful place, so you don’t get all stressed about it.

I mean how many of you are thinking about fun times while cleaning your house? Or on your job daily etc.?  Your mind can take you to another place and your job just gets done.  Maybe this is a type of multitasking. Either way, it works. I get through every day with the mundane task of prompting my daughter through her day.

Sometimes we have fun. Sometimes we are joking with each other and it is fun.

I an naturally so organized, so I have to help Desi stay as organized and clean as possible, while she lives here.  She likely will be living with us until she is married one day.  I don’t see that happening for a long time, as relationships are hard for her. 

Well today I got just a little frustrated with my job task. I got Desi up at 12:30. That should be  enough sleep for most of us, right?

I informed her that she didn’t do the dishes yesterday, which is her only main chore in this family, other then her own messes, and her room. I casually stated that she needed to get up and get the dishes done.

Ok this was 12:30.  I have prompted her many times since 12:30 and it is now after 6 PM, and the job is just NOW done!!

I mean at 12:30 she got up, spent an hour or two eating and watching TV. Ok, I know she needs her blood sugar, so that is ok.

 2;30 Still no dishes. I see that and prompt again.  Some time in the afternoon she starts the dishes. Then she thinks she is done.

I come down and pans are piled to the cupboards on the counter. The counters are not cleaned off. Food in the strainer, more dirty dishes from her lunch are on the table, food is out all over etc.

Desi, you need to finish the job! I go into her room and my young lady is back in bed ASLEEP and it is after 3 now.

Didn’t I get her up at 12:30 to do this?

I wake her up again, and instruct her on what she didn’t finish.  I leave and come back hours  later, and she is in her room. I am now a bit flustered. DESI THE DISHES!

She says she is cleaning her room. RIGHT! I go check the room and it still has two feet of clothes everywhere and food trash mixed in.

So this time I stay down stairs until I “eyeball” her at the dish counter to put the pans away.

Then I wring out a dish cloth and hand it to her to wipe off the counters.

Then I point out the food and watch that she gets that put away too.

By now  it is about 6 in the evening, and this started many hours earlier. Also the entire time I am standing there watching her finish the process, she stops repeatedly to text her friends! PATIENCE TERRY!

The only way this girl can have success is if I stand there and watch her.  If I do that, I feel like I could do the process faster and better myself, so it wears me out to watch her. So I prompt her, go away and forget what is going on and come back and have to drag her back to the process and prompt her again.

I am still in this job that doesn’t pay me one cent per hour and I can’t quit. The boss can’t change the employees, as I am the only one qualified for the job.  I can’t get myself fired because if no one does this job, it is not just my daughter who suffers, but I will too.

I have to manage all of her doctors appointments, counseling, psychiatrists, medications, financials, emotional needs, chores, and much much more in her life.  This is only something that I can do “ONE DAY AT A TIME”!

I am guessing someone reading this is thinking, OH girl, you have it easy. I have  etc. etc. etc.!!

Yes I do, but I raised kids for 33 years and I didn’t realize I wasn’t going to have an ending.  Now I do of course.

It is something that I need to get over and get used to. Being an external brain could potentially be for life with my children.

I am very much involved with Jon too, but he is not living at my house. I manage his money and help him with appointments, groceries, and lots of little things,  etc.

I don’t live with him though and I don’t have to look at how he lives daily. PRAISE GOD FOR THAT! One is enough for me.

Now after raising nine kids, raising one has it’s perks for real. There is no competition and Desi gets all of my daily love and attention. That part is rather awesome!

One day at a time, I am still a parent and one day at a time we will get through.

Prompting Desi in life is my job, as her external brain.

Lord give me grace and strength to keep up this job and do a darn good job at it!! Thank you LORD!

Terry Quinn

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I have been pondering this all day. Desi has a pretty serious issue with things in her world not being A-OK, all the time. I mean even little things that are not right. She feels the need to set things right and will obsessively text someone until she gets the answer she wants to hear.

I have been wondering, “how can I help her?”

She is pushing friends away with her demanding behavior at times.  I don’t want to see her friendless. She doesn’t have any friend who has really stuck with her in life. They all come in for a season and drop out after a while. Often I have seen why.

I try to help my daughter to go slow, to learn how to relax and trust God with things. It appears to me that this is honestly a “Can’t, not won’t” issue.

There is an issue going on right now with a boy that she is dating , she is terribly unhappy about it, and will be until it is settled. She can’t let it go.  It is the one thing on her mind.

She is texting him constantly to try and get him to resolve it and he isn’t responding back. Is this going to be another loss for her?  I am trying to trust God about it all myself. I want her with the right person in her life. That person needs to be someone who can handle her demanding issues.

Back when she used to go into rages, she would rage in my face, trying to get me to agree with her, or give her the answer she wanted to hear. I couldn’t do that, for one, it would have made rages happen more and two, I wanted her to mature and realize that she couldn’t get her way every minute. If I gave it all to her the way she demanded, she would never mature. She has matured some now. She has managed to get some control over her raging. I also have learned not to push her, or argue with her when she is in that mood. I walk away and let her calm down.

Anyway in today’s pondering, I think I have some clues that are linked to her FASD, her brain injury, as to why she gets this way.

 Deserai is a concrete thinker. She cannot solve problems very well in general because she can’t use abstract thinking. So her problem solving abilities are low. Often I have to solve things for her that she can’t figure out. She will always say, Wow that is a great idea. She couldn’t come up with it herself though, because it takes abstract thinking to solve problems. That is often why these kids can’t do well in math. 

So when she sees a problem, but can’t figure out many solutions to it,  she demands that someone else, an exterior brain, resolves it for her. She feels helpless, overwhelmed until someone finds a solution.

Desi lives in the moment. Often folks with FASD do not have good concept of time. So they don’t think into the future. Right this moment she is hurting and someone has to take that pain away. She can’t imagine that it can be resolved and fixed in time, so she gets demanding that someone fix it now!

 She doesn’t remember what happened the last time she did this to someone. Her memory is impaired. She has had the consequence of loosing a friend, but she doesn’t bring that to the forefront of her memory when she is acting now.  

 She is insecure and frustrated often anyway, as a brain injury keeps her from feeling full confidence in her life about most every thing. 

Her life feels very unsafe and scary when something is wrong. She wants to make it all right and safe, NOW. 

She has no ability to wait for gratification, which is what young children are about and her maturity level is much lower then her 18 years of age.

 So when a problem presents itself in a relationship, Desi will text and push that person to fix the issue, until often she pushes the person out of her life.

 This makes me sad as I don’t want her to be lonely, as the greatest need that my daughter has is for a social life and friends. The  thing that she needs the very most, seems the farthest from her reach, because of her actions.

 I have prayed that God would send her friends that are as needy as she is, so that they would need her as much as she needs them. I am not sure if that is a good thing or not. 🙂

Lord you know what is best for my daughter. Please send her lots of friends and ones that fit with who she is and will stick by her.

Thank you Lord!

Terry Quinn

I asked for feedback, in my original post on this subject ,and I got quite a bit. If you haven’t read that one, you might want to read it, before you read this one.

Ok, I am going to list some  statements that represent the feed back, that I received from viewers:

1) We cannot leave the word “alcohol” out of the diagnosis, as it is the source and a statement to the world that drinking in pregnancy is dangerous.


2) Most birth mom’s do not admit to drinking, so it is almost impossible to get a diagnosis of FASD for a kid who has it. So using the term FTBI does explain what my child is dealing with, since he was born with brain damage.


3) We are just starting to make headway with the world about the dangers of alcohol, we can’t give up on that, though I see the value in terming it a TBI when so many kids are seen as having behavior issues that are blamed on their environment.


4) I so agree with this. It would be possible for my son to get some support without all the drama.


5) Our school does not get that our kids can have a high IQ and yet still not be able to function to the level expected. They don’t “GET” that alcohol in utero could do that.


6) As a person living with FASD, I feel that if there is a stigma involved we have to be the ones to go out there and meet the challenge to show that we are just people too.


7) I agree that it might be good to have Fetal alcohol spectrum disorders categorized under the umbrella of brain injuries, b/c just like with the TBI there is no cure, there are only adaptations or Accommodations, and medications for the secondary disorders.


8)  I’d say move on forward with this… I call the adults living with the challenges of FASD – Life Experts

 It is Brain and Body Injury.
9) It’s very hard to be a one woman army. Taking on the acronym is a complicated battle given the AMA and the CDC never mind all the other organizations. It’s been FAS, FASD since 1973 (Ann Streisguth research) and probably before, but it’s unrecognizability lies in it’s greatest problem…the stigma. I’m not sure that whatever you call it won’t just be swept under the rug in the same manner. It’s a stain on the human experience. It’s weakness, though you and I know that it’s illness that causes one to drink. It’s ignorance, though you and I know that the medical field isn’t committed to sharing its truths, that drinking during pregnancy doesn’t cause harm. It’s a boatload of “stains” of the flaws of being human, which we all are….but no one wants to admit. I think that Nofas has had this huge obstacle and challenge in getting to a tipping point on awareness because of all these reasons…and of course, money….pacs, and other supports of the alcohol industry. It’s a tough nut to crack. That is not to say that I am not optimistic that it can be cracked, but like the environment….it takes more than one prius owner to save the planet. We ALL need to make noise. We ALL need to make a commitment. We ALL need to tell our stories. Our FASD affected need to speak up- which is hard, of course…one becuase many of them don’t have a voice and two because many of them are undiagnosed. And there, goes the rub. Right? So where is the shift most apt to happen? In the awareness? In the ability to get a diagnosis? If it looks like a rose and smells like a rose, it is a rose?! Keep on doin’ what you are doin’! You are creating thought…thoughts are things. Things create movement. Leaders are born…not made. Movement will create change. You are doing great things….don’t get discouraged, I have a feeling we might not see it in our lifetime…but let’s pray our children see it!
10) BUT the real biggie that hits across the board with these kids is the brain injury. Often they have executive function delays with normal IQ’s. People see the normal IQ and cross them off the list for services, understanding and help. This leads to low self esteem, depression, frustration, pain and often raging.”….. more than the lable, the above is my issue; no one accepts their limitations, especially if they have a normal IQ. they expect the impossible for them and punish or denegrate them for not acting “normally”; then we get depression, anger, frustration, low self esteeem, and they no longer believe in themselves. You may as well punish a paraplegic for not running the marathon. Sorry this really angers me; I have five children with FASD, and yes, TBI is a much better description because then people might accept their limitations and work with them and their parents and empower them to succeed.
11) In all of my 30 years of working with FASD, with children and families affected by it, and with researchers and experts in the field, there is universal understanding and no denying that this is brain injury. In addition, there is a high degree of sensitivity about the stigma associated with the source of the brain injury being alcohol for both the affected child and, particularly, the birth mother. While unfortunately bearing the associated stigma, there exists some sense of relief in finally finding and understanding the root of the cause of the brain injury; that is, “I am not purposefully a bad kid;” “we are not bad parents.”
Yes, we do need a non-stigmatizing term, but we cannot ever lose site that this brain injury is 100% preventable, and that we have an obligation to educate everyone, particularly pregnant moms and dads, that there is no known safe amount or no safe time to drink alcohol during pregnancy…not a single drop.
Ok, so in the mixture of feedback, I get some really clear points. We NEED something different like Traumatic Brain Injury because:
1) So many cannot get the diagnosis of FASD, due to not knowing if maternal mom drank
2) So many people do not understand FASD where they would TBI.
3) Kids with high IQ’s, but low executive functions could be understood.


4) So that we would understand that there isn’t a cure, only adaptations, accommodations and/or medications.


5) So that our kids with FASD are not stigmatized.


6) So people would understand that their behaviors are brain injury related and not environmental.



BUT one very BIG point that I got in the feed back,  WE CANNOT  leave out that alcohol is the cause here and the message that drinking is very dangerous in pregnancy.

Sooooooooo I was thinking today about an addition to the acronym FTBI. How about AR-FTBI?

Alcohol Related- Fetal Traumatic Brain Injury.

Does this make a stronger statement then Fetal Alcohol Spectrum Disorder?

Do you think people will “Get” our kids more if we have the TBI in the diagnosis?

Having Alcohol Related Fetal in there, includes the reason, but the person who doesn’t want to carry the stigma can still just state that they have a TBI for more understanding, compassion etc. from teachers, bosses, out there in the world.

How much more real this would sound, then telling them they have FASD which to the largest part of our population means “Oh you are blaming your problems on alcohol?”

I mean, “I DRANK WHILE I WAS PREGNANT and NOTHING HAPPENED TO MY KID”  That is the response I have often heard OR, the French drink daily, but their kids are ok! Are they? 

So today I told my friend, Ann, that I want to call it AR-FTBI and she ended up in a conversation with her daughter’s case worker at the group home where she lives. She has never been able to get this woman to understand her daughter, so she used this terminology. She told her that her daughter has an Alcohol Related Fetal TBI and guess what? That woman said, REALLY? And she all of a sudden “GOT IT!”  What has taken her years to try and get this woman to understand for her daughter, just clicked.

She responded to Ann, “You mean it is permanent?”

TOUCH DOWN!   Well most of us parents hate using that “P” word, (permanent) , as we don’t want to limit our kids, but we sure do need to get others to understand that at least for now, and a long time from now, our kids CAN’T, not WON’T, BUT are not doing this on purpose!

I welcome feedback on AR-FTBI Alcohol Related- Fetal Traumatic Brain Injury. 

I know full well that I am not going to change  a whole diagnosis with a blog post, but I am going to advocate just the same. If you cannot get your child diagnosed with FASD, maybe one day there will be this option.

If you cannot make others understand what your child is dealing with, maybe explaining it this way will help.

If your child does not like being labeled ALCOHOL, maybe your child can choose to use TBI, as it is the truth.

Thank you Lord for helping us, help children, who have Alcohol Related- Fetal Traumatic Brain Injuries.

Terry Quinn

As a parent of two young adults with FASD, it has frustrated me to no end, how difficult it is to get our world to understand this, or even believe that it exists!

How much MORE frustrating it is for my kids!  How embarrassing it is for a kid to think of themselves as ALCOHOL damaged.  The stigma is huge!  They were HARMED when their birth mom drank.

 The person who drank and harmed their child is also stigmatized. That person cannot admit to what they did, or the world will crucify them! Even though they often had no clue how dangerous it was to drink.

How can we get the world to understand FASD, not stigmatize it, and find a place where our kids can fit? Our kids need services, understanding, acceptance

Well for starters, what are we going to call this?  It currently has several titles which can alone be so confusing.

1) FASD Fetal Alcohol Spectrum Disorder, ‘

2) FAE Fetal Alcohol Effects

3) FAS Fetal Alcohol Syndrome

4) ARND Alcohol Related Neurological Disorder

Our kids have Traumatic Brain Injuries and often due to poly-substance.  Prescription drugs, street drugs, alcohol and pot can make the mix.  We are not calling it PSSD Poly-Substance Spectrum Disorder. Why?  Alcohol is the worst culprit and others can slide off as mild. However I have a son who was supposedly only effected by prescription drugs due to birth mom’s mental illness and he has memory deficits, sensory processing disorder and ADHD. He was effected.

 Simple lack of oxygen during the birth process can cause a TBI. There can be many causes for brain injury before, during and right after birth.  Simple psychological’s and neuro psychologicals’ both can test neuro development and executive functions. Cognitive delays can be found.  

When a child appears able, but absolutely cannot, without help, they are brain injured. What a relief it was to me to figure this out. So many areas I expected my children to be able to function, it wasn’t because they were being stubborn and refusing, but they honestly could not perform these tasks, due to their brain injuries.

 How awesome it would be if they had a diagnosis that understood this and helped them to tell the world what they struggle with, without using the term alcohol. Then others would not look at them like they had ten heads,  are mentally ill, or even worse, WRONG! I mean, so many people deny alcohol can be dangerous. So how can this be true? You are making a big deal out of nothing? What a slap in the face that is to a person who has a TBI!

  Everyone needs to be accepted, understood, loved, and have purpose on this earth. No one likes labels that make them feel victimized, or bad.  Even the term MR is a negative term for it. Some do fit in the MR catagory, and for those, how much better would it be if they could have a brain injury, not a demoralizing brain NAME.

Of course there is another factor here. Alcohol and other substances also can effect far more then the brain. Many FAS children have lung difficulties, endocrine issues and more.

BUT the real biggie that hits across the board with these kids is the brain injury. Often they have executive function delays with normal IQ’s. People see the normal IQ and cross them off the list for services, understanding and help.  This leads to low self esteem, depression, frustration, pain and often raging.

The luckier ones have a low IQ?  Well NOT, but they are the ones that get the diagnosis and possible services.

We need a title for these  neurological-neurodevelopmental  disorders that covers all the basis and yet does not stigmatize the person who has it, nor the birth parent.

 Our children have been victimized enough!  Their world is tough to manage!  They are often seen as normal individuals who are expected to be able to do things that they cannot do.

 They very often need an external brain for life. 

Why are we victimizing them further by labeling them alcohol damaged?  Because no one has thought about anything different?

It is the elephant in the room, but if we look further at the most basic brokenness, they have a BRAIN INJURY!  They have a brain injury that occurred in utero. They present the same neurological findings as folks who have traumatic brain injuries from accidents.

They have a brain injury that can be caused by alcohol and other substances. Even cigarette smoking has been linked to lower IQ’s in children.  

 Why can’t we call a spade a spade? Because it happened before they were born?  

OK then, Call it FETAL TRAUMATIC BRAIN INJURY!!!!  FTBI………….WOW!  This takes the victim out and puts in far more understanding then the drug alcohol. Our world cannot see the danger in the teratogen alcohol, but they would understand the words BRAIN INJURY.

 OH FASD world, give me feedback. Do you feel the same way as I do? Do you think that there should be a proper diagnosi  for our kids to fit into that takes out the victim and stops stigmatizing them?

 Oh LORD HEAR OUR CRY!!!  WE need to get understanding and acceptance for our kids. So many more are becoming victims daily. We can’t shove this under a rug forever. It needs to be recognized. As long as it is stigmatized, it probably won’t get due recognition and understanding.

 Can we use a different set of letters? FTBI?

Terry Quinn

Desi and Jon are social extremists and when they are by themselves, not in a social situation, they are in pain and lonely.They both tend to deal with loneliness by sleeping.

Desi and I just had a chat about this. Why is she lonely all the time and why does she feel so needy?

She said that when she is alone, she feels abandoned, rejected, and just not happy. When she is with people the hole inside her is being filled up.  So she constantly craves friends to talk with, be with, have relationships with.

The sad part of all of this is that her need is so great that she often smothers her friends with demands and soon they are no longer her friend. Thus she ends up feeling more rejection, loneliness and despair.

This is a HUGE problem for my two kids with FASD. They seem to plan their whole life around social events.

With support to get up on time, get daily household chores done, and a ride to work, Desi is able to hold down a part time job. She works at a thrift store.  She is able to manage a register pretty well that tells her how much change to give back, and she LOVES being with people. She can chat all the time during her job with new customers and her co workers.  This is rather fun for her and since she has some pretty amazing co-workers, she is very happy there.

Her job fulfills her need to be social. I love that for her. She always comes out of there bubbly and chatting with everyone and I feel good when she is happy.

However in her personal life, I have watched her go through friends on a frequent basis. Especially boy friends, but also this happens with girlfriends.

There are a few reasons for this. She is socially and emotionally immature for her age.  This started to show up at about the age of 16.  Gradually friends were dropping out of her life.

She also can get bossy and demanding and who likes to be treated like that for long? She is so needy that she suffocates her friends at times. Once she has a friend, that friend is going to be hearing from her alot. She can just drain them dry.  One wonders why she hasn’t yet met her carbon copy and wouldn’t that solve the problem? I mean someone who might need her as much as she needs them? 🙂

Desi and Jon both have little  ability to be creative about their lives.  Organizing and planning are a challenge so  having creative hobbies is difficult for them. Their lives are kind of “empty” outside of their job time.   They need their external brain to be there partly just so they are not alone and to manage their empty time.

They both sleep most of the day and get up with no purpose or plan for the day, and both need prompting to get important things done, or these tasks won’t be completed. Then comes the free time. They would sit  there with nothing to occupy it, unless they can find a friend, a party, some where social to meet with others.

Another reason I believe they both sleep alot if there isn’t anything going on socially, is depression. When you are running high on social events all the time, it burns up adrenaline. Too much adrenaline burns up serotonin.  These kids are born stressed and alot of them deal with mood disorders. Their bodies are always in high alert and using up adrenaline. Adrenaline is a drug of it’s own type. It masks pain.

When something really bad happens in our life such as the sudden death of someone close, a person can go into shock. They won’t feel pain for days. The reason for that is the large amount of adrenaline that is rushed through the body. It shuts down the pain receptors.

So keeping life on a social high also helps our kids shut down the pain receptors, but in reality it also burns up serotonin which can cause the vicious cycle. This kind of keeps them on the wheel of seeking people to fill them up on the inside and take away their pain.

  They are often  very bored and both of them will often  just go back to sleep to avoid dealing with that pain. Sleep can be a good thing for them, as it can heal the stress on their body, but too much of it isn’t healthy as it hinders their body’s need to get oxygen and exercise.

As  an “external brain” I find I do need to use gentle suggestions to Desi that maybe she needs to slow down a bit and get some normal sleep. Or maybe tonight needs to be a sit in night just for some down time. When she runs too much, she begins to show it in mood swings.  OR maybe it is the opposite. Maybe now she has slept too much and I need to make her get up and get moving a bit. Then of course I need to help her keep occupied or she is lonely again and wants to go back to bed.

They are adults and we can’t make them do anything, but I find myself trying to help her manage her sleep, resting times, exercise needs and  social life too. 🙂

My heart does hurt for the loneliness that my kids deal with.  I am here. They know that.

DARN FASD!  Stole my kid’s abilities to occupy themselves.

Lord send good and positive friends into my kid’s lives.

Terry Quinn