any resources about FASD or ARND?

Discussion in 'General Parenting' started by ksm, Mar 7, 2013.

  1. ksm

    ksm Well-Known Member

    The more I read, the more sure I am about the possibility of difficult child having FASD (fetal alcohol spectrum disorder) or ARND. I do know that biomom used massive amounts of alcohol and also crack cocaine until she could no longer hide the pregnancy... about the 4th or 5th month. But, my son, said she did stop once she "knew" she was pregnant. I am sure she "knew" for a lot longer time period, but didn't stop until it became obvious.

    We have the appointment with the neuropsychologist in about one month. I am trying to get a copy of the birth report. I am sure difficult child weighed less than 5 pounds at birth. But, to get the records, I have to drive to a town 60 miles away, have a photo id, court records and ammended birth certificate to get a copy. I did find out that at 3.5 months her head circumference was 16" and she was 22" long. But it didn't show the weight at that check up.

    She always seems to have a level of irritation or agitation that is always there... you just don't know what will make it explode. She is making poor choices in friends and behaviors, and is trying to dress in a very provocative manner. There are rages - 2 to 4 times a month. But a lot of foot stomping, door slamming, and "I'm not listening to you!" repeated over and over.

    What kinds of "tests" does a neuropsychologist do? Are they all questionaire type things? Or are some of them like brain scans, or xrays?

    The first appointment is just my husband and I, then she will schedule tests, then will see difficult child. I know right now, difficult child is not going to be happy. I just feel like we have to do something before she ages out and we will have no control. That might happen anyway, but I so want to keep her from the same path that biomom went down and never came back from. KSM
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Types of FASDs

    Different terms are used to describe FASDs, depending on the type of symptoms.

    • Fetal Alcohol Syndrome (Fetal Alcohol Syndrome (FAS)): Fetal Alcohol Syndrome (FAS) represents the severe end of the FASD spectrum. Fetal death is the most extreme outcome from drinking alcohol during pregnancy. People with Fetal Alcohol Syndrome (FAS) might have abnormal facial features, growth problems, and central nervous system (CNS) problems. People with Fetal Alcohol Syndrome (FAS) can have problems with learning, memory, attention span, communication, vision, or hearing. They might have a mix of these problems. People with Fetal Alcohol Syndrome (FAS) often have a hard time in school and trouble getting along with others.
    • Alcohol-Related Neurodevelopmental Disorder (ARND): People with ARND might have intellectual disabilities and problems with behavior and learning. They might do poorly in school and have difficulties with math, memory, attention, judgment, and poor impulse control.
    • Alcohol-Related Birth Defects (ARBD): People with ARBD might have problems with the heart, kidneys, or bones or with hearing. They might have a mix of these.

    Kids who are exposed to alcohol and/or other drugs in pregnancy tend to have more behavior problems, impulse control issues, and substance abuse issues. My son who was born with cocaine in his system (and his mom didn't say "no" to alcohol either, I'm sure) has autistic spectrum disorder which all of his neuropsychs believe is at least partly due to his birthmother's suspense abuse while pregnant plus her lack of prenatal care. He was a big baby too...eight pounds. They don't necessarily have facial differences or heart problems, although they can. My son has small, strangely shaped and slightly low ears and had open heart surgery at five days old, but nobody thinks it's because of the alcohol/drugs (I do). He doesn't have behavior problems, but clearly has some delays due to his birthmother's poor choices.

    It doesn't matter if birthmother quit drinking. Drinking early on is the most dangerous time although there is no good time. The fetus is forming at the beginning of the pregnancy. in my opinion it's a given that part of her behavior is not her fault, but due to differences in her brain due to alcohol/drug abuse in utero. Know many families who adopted kids exposed to toxins and it can be a very difficult ride.

    Gentle hugs. If you live in or near Chicago PM me. I k now a good place.
  3. InsaneCdn

    InsaneCdn Well-Known Member

    And then there is Fetal Alcohol Effects (FAE) - fetal alcohol effect. Essentially, not as severe as Fetal Alcohol Syndrome (FAS), and usually not with the obvious facial features, but.. still have neurological impact.
  4. AnnieO

    AnnieO Shooting from the Hip

    Jett has been diagnosis'd with Fetal Alcohol Syndrome (FAS), and one of the markers they said was an indication is his facial features. However, he is 1/4 Asian and that would account for those particular markers. Regardless, we know for a fact that bio mom drank during pregnancy. Given Onyxx's behavior, I wouldn't be shocked there either, and husband is pretty sure she drank during that pregnancy too.

    The door slamming and foot stomping... Could be typical teen... I had a low tolerance for frustration and did a lot of this myself. However... I didn't have full-on rages. That right there is enough to make me think you are probably right.

    With the head/height - just for comparison purposes as I have no clue what is "normal" - Meggie's head was 35cm, or just under 14", and she was 20" long at birth. She weighed 8 lbs 1 oz. I can unequivocally state that she canNOT have alcohol or drug related issues, nor did I have gestational diabetes. She's about the healthiest, happiest kid... But then, we do have MH issues in both families, and she is only 5 months old.
  5. buddy

    buddy New Member

    The neuropsychologist would be interested in any medical tests, scans etc. A neurologist (or other MD ) would need to order that but they sometimes work as teams.

    The tests should include interview, and checklist types of forms, some history types some current. Usually both standardized ( with normative data to compare to neurotypical scores) and informal non normed. And there will also probably be formal tests with pictures, objects, verbal directions/questions, written, etc.

    You can provide anything you think will help. Report cards, behavior reports, doctor reports, psychiatric notes/reports, etc. Sometimes they may ask for permission to get info themselves.
    You only have to give what you think is useful. I've had providers write inaccurate reports and I never pass them on. Just a couple of not important things.

    Good luck. I hope you get good info.
  6. ksm

    ksm Well-Known Member

    Just found this information that fits my difficult child to a T.

    Parents of children with FASD report that they have difficulty with healthy bonding and attachment. The children seem to form social attachments quickly, and break them just as easily. They tend to be inappropriately friendly and do not have a good sense of “stranger danger.” It has been assumed in the field of social sciences that attachment disorders result primarily from poor parenting and lack of proper bonding in the early months of a child’s life outside the womb (Bowlby, 1980; Rutter & O’Connor, 1999). However, deficits in attachment behavior are seen in both alcohol-exposed humans and animals, suggesting that these changes are primarily the result of the prenatal exposure to alcohol rather than maternal behavior (Kelly et al., 2000). It took many years for John and I to form a health parent-child bond, in spite of his growing up from infancy in our nurturing, stable family. John will bond quickly and easily to an interesting stranger, although the attachment is superficial. This places John at risk of becoming involved in unhealthy relationships or being drawn into high-risk groups.

    I have seen difficult child actually cry after spending the day with a "new friend" that maybe we met on vacation and knowing that she wouldn't see that person again. She can spend a few hours with someone and announce that they are BFF's. She never knew a stranger even as a young child. I have seen her in a doctor's office grab a story book and try to climb up on someone's lap and want them to read to her.

    Just so not ready for the next few years. I know we got to start thinking ahead to birth control. I keep hoping that her boyfriend will find another victim. KSM
  7. AnnieO

    AnnieO Shooting from the Hip

    ...Speaking from experience... First hand as a teen and as a Mom... Get her on birth control NOW...
  8. buddy

    buddy New Member

    Hugs are not enough. I think you have valid questions! I pray it goes well.
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I took Sonic to a specific center in Chicago which specializes in Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE). Although many people don't k now this, there isn't much of a difference between the full Fetal Alcohol Syndrome (FAS) and the effects. Basically the behavior and deficits are the same, but Fetal Alcohol Effects (FAE) kids just don't have the facial features and short stature. About it, or so I was told. The worst of these children with Fetal Alcohol Syndrome (FAS) do NOT understand or remember right from wrong and often don't even know why they are in jail when they end up in jail, which is common. They need extreme supervision. They can't remember their school work. They have "swiss cheese thinking"...know something one day, forget it the next. They tend to make the same choices their parents made even when told over and over again that they are at high risk to become an's like they don't get it. Fetal Alcohol Syndrome (FAS) is organic brain damage. This is full spectrum. There are many in between. The reason they knew that Sonic dodged the magic bullet, in spite of all odds, is because he has a great memory and no swiss-cheese thinking at all, although his ability to learn difficult concepts is limited and he has Autism Spectrum Disorders (ASD). Sonic is extremely high functioning for his exposure level, but right now he still needs some adult supports.
    Children who are adopted, especially out of foster care, are at very high risk to have part of the fetal alcohol spectrum because almost all the child profiles I read (and husband and I read a ton) told about how the kids were the result of families who substance abuse and did it during pregnancy (well, mom did). It is not their faults or our faults. They are very hard to parent because often they just don't learn from experience. Sometimes they don't even understand right from wrong and may seem like sociopaths, but they aren't. They are brain damaged.
    Good luck on your journey. It's quite a ride!
  10. ksm

    ksm Well-Known Member

    Just looking at difficult child's facebook page... and it seems like the 17 yo boyfriend broke up with her today. Yea! An answer to my prayer. That is just one less thing to worry about until she finds another problem guy. KSM
  11. buddy

    buddy New Member

    MWM, I was always taught the same. Fetal Alcohol Effects (FAE) folks not being any better off cognitively)

    Q is like Sonic in that his memory is consistent. His mom entered treatment very early (consistently clean and was monitored before, supposedly clean but who knows, Know what I mean??) but still...
    Several weeks of critical
  12. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Buddy, and Sonic should have had the full scale Fetal Alcohol Syndrome (FAS). His birthmother not only never entered treatment but had no prenatal care until she came to the hospital in labor and high, then gave birth, named him and left AMA. He had cocaine in his system and syphillis. Certainly, she must have drunk a lot during her entire pregnancy, but he doesn't have enough traits of Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE) to have it. In fact, he isn't even very impulsive and has pretty good control over his emotions and certainly understands right from wrong. He was just one lucky person. Still, the mark of pre-natal alcohol and other drugs are there, mostly cognitively. He is unable to perform up to the level of his IQ, although is IQ had been tested from 75 to 110. I think he is more 95. His academic level is between fifth and sixth grade and that's where it will stay. He is at fourth grade in math and seventh grade in reading. Abstract thinking skills aren't good. Therefore, he is not going to be able to compete in the workforce and is getting certain supports, although he is far more functional than anyone ever thought he'd be when he was a toddler and other word for it...crazy!!! It helps that he is afraid of both alcohol and drugs and has no interest in anyway. But ya never know; only that drinking and drug use during pregnancy is never a good thing for the poor developing baby.
  13. buddy

    buddy New Member

    It's amazing, and why they say there's no way to know. I have a friend who just didn't know she was preg for a long while and she liked to party with her hub on weekends. Nothing out of control but they had property up north and had fun. Her baby was totally fine. Other kids are hurt from so apparently little.
    I love Sonic stories, he inspires me.
  14. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    buddy, thank you. Sonic inspires everyone (this is the truth). So that it doesn't sound like I'm bragging (I don't mean to) remember I have a 35 year old with all his faculties who is a total mess and I have a 28 year old who was also not drug affected but she almost killed herself using drugs so not is all good in my world. But Sonic and Jumper are exceptional people.
    Q is the type of child I could love with all my heart and I hope I can meet him one day...he's so handsome too. Both Q and Sonic are victims of their birthmother's choices but they have good hearts and are basically good kids. And, let me tell ya, Q is so lucky to have you and your loving family!
  15. susiestar

    susiestar Roll With It

    I wish there was a way to legally keep women from drinking during pregnancy. I won't say much more because it would end up political and that just sidetracks us from answers to ksm's questions.

    Do you have a parent report? The link in my signature will take you to the archived thread with the outline and more detailed info. It is basically ALL the info about difficult child in one binder. It is a LIFESAVER, sometimes very literally. Warrior Moms before my time came up with the outline and they did an awesome job. It lets you keep everything organized and at your fingertips. It goes with you to each appointment, session, meeting,whatever. When the doctor or whomever is wondering about this medication, you can go to that section and say "we have tried that medication at this dose for X weeks with this result" for each medication. You can give a copy to the various professionals you work with, but make sure you keep a master copy and a working copy for yourself.

    I summarized sections and only gave the docs the summaries because after a little while I realized they were not reading it all or in depth. so a summary at the beginning of the section had the recent info in bullets so that the doctor didn't get bogged down.

    I also have current photos in the PRs. For many people, it is easier to remember names than faces, or the combination of them rather than just one. As a kid there was a large family in my school who's name was one letter from mine. At one point someone at the pediatrician's office dropped the files for ALL of us (they had six kids at the time) and nothing was fastened into the file folder. ALL the pages were mixed up, there were no names on a lot of the pages. Luckily we were all pretty healthy, but we ALL have guesstimates on when we had various shots, etc... There were two shots that some of us needed and we all got them again, so it has always stuck in my mind.

    Because of this, I put a current photo at the beginning of the report, on the bottom of the title page, at the beginning of each section and if a section is long, periodically through the report. I put the original photo on my master copy and then photocopy with the report rather than using originals all through the report. At first a few docs laughed at the photos, claiming they could remember the child's face and the photos were 'showing off' how nice I thought they looked. Later, the ones we stuck with, said they appreciated it because at the end of a long day, when dealing with messages or a crisis, the photo helped them remember the details of what was going on and what had/hadn't worked in the past.

    I firmly believe that with-o a Parent Report showing ALL we had done to help each of our kids as we went through the bad years, we could have lost custody and the kids would have been further damaged. We also could not have gotten the in depth help we did get, or much of the school support. Being able to show that we saw this list of docs, tried this medication, this medication combo, had this therapy for this long, etc.... Worked to help keep Wiz growing to the point where he was able to turn himself around in a very positive way.

    It won't fix the problems our kids have, but a Parent Report can help us figure out what to try next, even if that is because whatever is next is the only thing left that we know about.

    Fetal Alcohol Syndrome (FAS)/Fetal Alcohol Effects (FAE)/ARND is a huge and complicated basket of problems and challenges. By keeping track of what you have done, and how well it ended up, you can figure out the next step, or maybe even the next 2 or 3. MANY doctors seem to think that because a parent says something has been tried, taken, done, redone, yakked up on the floor or danced under the moon at midnight does NOT mean it really happened. They want proof. They will believe a barely legible scribble on a faxed/photocopied copy of a chart long before they will understand that you truly did try this, with that result, etc.....

    When you walk in with your Parent Report in a binder, with copies of lab work, reports from various doctors/therapists, copies of treatment plans, lists of medications taken and how they worked, etc....., you gain nearly instant credibility. it isn't 'just' mom's word, it is in black and white, printed. WE have a bias against believing what is typed on a page, even if it makes no sense. It is a cultural bias I took full advantage of.

    It takes time to put together a PR. Don't do it all at one time, work in short chunks of time. It is fine to take a partially finished PR to appointments. I did the most recent stuff first, and then put the older stuff in as I had time. One way to get a comprehensive list of medications is to ask your pharmacist to print out a list of your records. If you used more than one pharmacy, ask them all (I have a regular pharmacy and one for when mine is closed or doesn't have a medicine in stock.). Same for medical records. Pharmacies usually don't charge for records but labs may or may not. I always get a copy of xrays, lab work, etc.... when i have it done.

    Don't settle for the dr report on what the lab says. It is usually a form that says that the results are normal, or that you need to see the doctor. You want to get copies of the actual report with the actual levels. Hospitals and labs usually only keep this info for seven years, same for xrays and other scans. You don't have to go back and try to get all those records, but going forward ask for the dr report and the actual results that were sent to the dr. Don't let them talk you out of it. Some offices seem to feel it is their info and you have no right to it. They are wrong. Insist on being given the information. You may not need it now, but it could help in the future.

    The neuropsychologist should have an idea of the tests he wants to do. I always ask for the names of the tests, but NEVER with Wiz in the room. Wiz has different problems, but if he knew the name of the test, he would research it and figure out how to skew his results. It sort of runs in the family, so I was always sure to either have him leave the room or to call the next day and ask for the names of the tests.
  16. ksm

    ksm Well-Known Member

    I have something similiar, but not quite as complete as that. I have a notebook with plastic sleeves to slide papers in to. I will try to get more info in to the binder, and keep future papers in it. Thanks for telling me about it. KSM