We managed to have a relatively quiet Thanksgiving Holiday. OLA kept it together for most of the five days he had no school. He was calm enough that we were even able to play some board/card games on a couple of the days. Saturday was bad. He really melted that afternoon. But then again we were all tired and a bit cranky. As much as I love this holiday time of year I also can't wait for it to be over and done with. It just makes an already stressful situation that much more stressful. It was so nice to actually have a few peaceful days.
But now we are getting some stress from the school. Last night OLA told us that his teacher said he couldn't wear shorts to school any more. (now in all fairness it is almost December and has been around twenty degrees Fahrenheit the last couple of days) This is so frustrating - in the last two weeks we have talked with both the principle and his teacher about the shorts. OLA has sensory issues and between the various fabrics that he doesn't like and the fact that he easily over heats we have let him wear shorts as he chooses. We provide him with a pair of sweat pants to pull over the shorts for recess if he is cold and we send snow gear - including ski pants- once we have snow. I do not know why they continue to harp on him for this. (they don't harp on little girls for wearing skirts in the middle of January) If he is too hot - he is to hot!!! I've got bigger Dragons to contented with and wish they would just let this matter drop. So we are writing and e-mail today and if that doesn't work then we will try and phone call, and then of course a visit. So frustrating. If it is not one wave it is another. I never thought I'd be fighting with a school district over whether or not my child could wear shorts to school (when it is not an issue of dress code) in December. Do they not have better things to do with their time.Who is it that decides they know just how hot or cold my child is - he isn't suffering from hypothermia of frost bite - so whats the deal anyway? I think I'll go find a padded room and scream my head off - AAAAAAAAAAAAHHHHHHHHH!!!!!!!!!!!
Tuesday, November 27, 2012
Tuesday, November 20, 2012
Cross Roads
We have had two days now of relative calm. OLA seems for the moment to be once again holding it together. But it is a tenacious line we walk. Last night we decided for the first time in nineteen years not to put up our Christmas tree the day before Thanksgiving. It is just to much for OLA to manage. We are going to wait a couple of weeks to lessen the impact (we hope). BBA was a little disappointed but it is better than the alternative - which is to not put it up at all. We are also trying to decide whether or not to discontinue OLA medication. Although it has helped with some of the more intense ADHD behaviors there is some indication that it also intensifies the ODD behaviors. OLA has been very reluctant to take them and some days he down right refuses. We are at a cross roads - do we watch the ADHD behaviors increase in hopes of lessening the ODD. Or do we force the meds and watch as the ODD behaviors occur with ever increasing frequency and intensity. We face these cross roads almost daily - which is the lesser of the two evils when it comes to this disorder of FASD. Then there is the new research of the long term prognosis for out comes of children who have untreated ADHD. Or what happens if the ODD lands him eventually in prison long term. How's a parent to decide when neither plan usually ends with a pleasant out come. Which life jacket is least likely to drowned all of us? Who knows? Decisions, decisions, decisions - we are at our daily cross roads.
Friday, November 16, 2012
My Fault!!!
Last night was another stellar night at our house. And this morning I am in trouble with OLA because he was tired and wouldn't wake up until just minutes before we needed to leave for school. (It is of course my fault that he is tired even though he was asked several time to go to bed.) He is also mad that he didn't have his homework done. (This too is my fault even though he was asked (again) multiple times to get it out and I would help him.) He also refused to take his meds. The only one we have found so far that seem to help. But he isn't convinced of this - he says they don't work and that they just make him feel funny. Maybe they do - what do I know?! I am so tired - just tired, tired, tired. I don't want to swim against the current any longer - maybe I'll just let it sweep me away.
Wednesday, November 14, 2012
The Deep Dark Abyss of FASD
We had two beautiful days of calm to try and pick up the pieces and I'm not talking about the physical mess that OLA made. I'm talking the mess he has made of my heart and my emotions. I don't know how to heal my shattered heart. The pain is so deep that I can't even begin to describe it. There is no one with whom I feel I can share. Some days I just want to curl up in a ball and never move again. I have never been to a place where I have felt more lonely than I have felt in the last three weeks. It is a never ending wave that has over taken me. I love the this child from the depth of my heart but I honestly don't know how much more I can take. I am truly drowning. I am scared, frustrated, angry, and most of all in the loneliest place I have ever been. It is a deep, dark, pitch black pit that I have been cast into. I feel as if at times there isn't even any hope - no light at the end of this tunnel just never ending darkness. I don't feel I know how to heal the sorrow that is consuming my soul. What an ugly, ugly mess. My world is beyond ugly at this point in time. The hurt is so deep and I'm not even sure who to be angry with. Maybe myself. I wish I could help him. But there are things in this world that all the love in the world can't heal. I don't know why I am complaining no one wants to read that and no one really cares anyway. But I'm am going to leave this entry because maybe someday people will understand what it is like to live with a child who's life has been changed by prenatal exposure to alcohol and then maybe the insanity will stop. Maybe no more children's lives will be forever damaged unfortunately it is too late for my child.
Saturday, November 10, 2012
Hellish!!!
My life at certain points has become H***!!! A complete and total nightmare! For days on end OLA has been wound tighter than a spring and melting on a regular basis. We can not figure out what is triggering this change? But last night took things to a completely new level. OLA found out shortly after school that BBA was getting a new pair of shoes and he was not. Then the fireworks began for the next five hours (no you did not read that wrong). He was yelling, name calling, talking back, throwing things, ripping things, and just basically out of control. At one point we finally called a friend who has some specialized training to try and intervene. All though the worst was calmed I think the friend was even a bit frustrated by the time he left. The worst was it almost meant a trip to the emergency room for admittance because he was so out of control that we could not get him to de-escalate. This morning we are still cleaning up the mess. Believe it or not the pictures were taken after some cleaning had taken place. He was H*** bent on entire destruction. I hate my life sometimes I don't know how I am going to continue swimming through this set of rough waters. There is no escape. I don't dare leave when OLA is this way because the rest of the family will fall apart too. It's a mess and I don't just mean the house. I'm so tired and I honestly don't know who or where to turn too. If you haven't lived with a child like OLA it is so easy to pass judgement on him and on us as parents. I know I've been living that nightmare too. If you don't live with them you DON"T understand so please don't judge it makes our place a whole lot uglier and lonelier. Too tired to swim and sinking fast is where I'm at.
The bean bag was ripped and completely unstuffed - its contents all over the floor.
Bean bag filling, bedding, books and other items in his room.
Torn curtain - at first I thought he had cut this. But no he was so angry he ripped it even through the hem at the bottom.
The squash met their untimely end.
The mattress was torn - it is only a year old.
It was also colored on.
This is what is left of the mess in the living room - several boxes of cereal got untimely launches across the floor.
This is what is left of the mess in the kitchen after some clean-up had already taken place.
That is a pile of books that he ripped off the book shelf and then poured the contents of two Lego buckets over.
The clothes in his closet torn down and thrown on the floor.
More bean bag stuffing and a piece of a torn coloring book.
He ripped a book into pieces. This makes me sad - books were never a target until he took lessons from a four year old foster child we had who did this all the time. Now he uses it to up the anti.
Crayon madness on one wall.
The shelf that was unloaded. He tried for more but I forced him to move somewhere else.
This wall map was hanging where the crayon madness is now present.
As I said these pictures are only part of the destruction - after some clean up had already taken place. Drowning, Drowning, Drowning with no way to find relief. Hellish is the word and I'm not going to apologize because it is the reality of this part of my life and it is taking over.
The bean bag was ripped and completely unstuffed - its contents all over the floor.
Bean bag filling, bedding, books and other items in his room.
Torn curtain - at first I thought he had cut this. But no he was so angry he ripped it even through the hem at the bottom.
The squash met their untimely end.
The mattress was torn - it is only a year old.
It was also colored on.
This is what is left of the mess in the living room - several boxes of cereal got untimely launches across the floor.
This is what is left of the mess in the kitchen after some clean-up had already taken place.
That is a pile of books that he ripped off the book shelf and then poured the contents of two Lego buckets over.
The clothes in his closet torn down and thrown on the floor.
More bean bag stuffing and a piece of a torn coloring book.
He ripped a book into pieces. This makes me sad - books were never a target until he took lessons from a four year old foster child we had who did this all the time. Now he uses it to up the anti.
Crayon madness on one wall.
The shelf that was unloaded. He tried for more but I forced him to move somewhere else.
This wall map was hanging where the crayon madness is now present.
As I said these pictures are only part of the destruction - after some clean up had already taken place. Drowning, Drowning, Drowning with no way to find relief. Hellish is the word and I'm not going to apologize because it is the reality of this part of my life and it is taking over.
Friday, November 9, 2012
Two Nights in a row!!
OLA lost it again last night. He was told no and that was all it took. We have had multiple melt downs this week over not being able to do what he wants when he wants. What a mess. I don't know how much longer I can keep swimming. I am so tired. This nightmare is never ending.
Thursday, November 8, 2012
Some Days!!!!
Some days life just sucks!!! Yesterday was one of those days. OLA was just out of control. Melting every time he didn't get his own way. Throwing things, hitting kicking, yelling. It was good thing I hadn't really started my extra cleaning for tonight's activity or I would have had to do it twice. Or three times! He started after school, then mellowed for awhile and then he started all over again about nine after they got home from scouts. We finally went to bed sometime around midnight or one a.m. It has been a really rough couple of weeks. He just is all over the place with his behaviors and most of it is just not good. I work hard to be understanding, advocate, and be a parent with reasonable expectations for him. But, sometimes I just get tired - some days it would be easier if I could just stop caring - about anything. I hate my life sometimes - but I love my child so I just keeping paddling even when life sucks!!
Wednesday, October 31, 2012
It begins!!!
Well it has begun!! I was hoping that with every passing minute, hour, day, week, month and year of school that we would miss the "inevitable". That is a trip to the Principal's office (not for a reward). But alas - tis not so. I should quit holding my breath on these things - I know it is only a matter of time. The principal met me at the car today after school. To tell me there had been an incident on the playground involving OLA. I didn't know whether to be mad, to cry, or to laugh ( although it certainly wasn't a laughing matter). And although OLA knew he was walking over to talk to me he still didn't get it. On the way home he just kept asking me why I was upset at him. Oh, how I hate that disconnect in his brain. I just pray that we get him to all the way grown-up without him doing anything "really" stupid. He is just so impulsive and out of control it is scary sometimes - to say he doesn't think before he acts it putting it mildly. And when the ODD kicks in lets just ratchet everything up a notch - or two - or three - or even four. I'm swimming with all my might but I'm still drowning. What a nightmare this life is. And the worst of it is that when we were all done the principal said to me, " I'm still not sure I got the whole story figured out". I told him "with OLA you probably won't". I not sure he knew what to do with that statement. They don't really get FASD. So the fun begins. Yippee, for Me!!
Sunday, September 2, 2012
FASD Awareness Day!!
September 9 is National/International Awareness Day.
Every year on September 9th, International FASD Awareness Day is observed. Proclamations are issued in countries, states, provinces, and towns all around the world. Bells are rung at 9:09 a.m. in every time zone from New Zealand to Alaska. People all around the world gather for events to raise awareness about the dangers of drinking during pregnancy and the plight of individuals and families who struggle with Fetal Alcohol Spectrum Disorders (FASD). The first FASDay was celebrated on 9/9/99. This day was chosen so that on the ninth day of the ninth month of the year, the world will remember that during the nine months of pregnancy a woman should abstain from alcohol.Anytime is a good time to raise awareness about Fetal Alcohol Spectrum Disorders (FASD).
Remember 0 - 4 - 9 . Zero alcohol for the Nine months you are pregnant!
FASD's are 100% preventable.
Every year on September 9th, International FASD Awareness Day is observed. Proclamations are issued in countries, states, provinces, and towns all around the world. Bells are rung at 9:09 a.m. in every time zone from New Zealand to Alaska. People all around the world gather for events to raise awareness about the dangers of drinking during pregnancy and the plight of individuals and families who struggle with Fetal Alcohol Spectrum Disorders (FASD). The first FASDay was celebrated on 9/9/99. This day was chosen so that on the ninth day of the ninth month of the year, the world will remember that during the nine months of pregnancy a woman should abstain from alcohol.Anytime is a good time to raise awareness about Fetal Alcohol Spectrum Disorders (FASD).
Remember 0 - 4 - 9 . Zero alcohol for the Nine months you are pregnant!
FASD's are 100% preventable.
Tuesday, August 21, 2012
Third Grade
Well third grade at our house started with a bang. OLA went back school and all heck broke loose. Both Sunday and yesterday we had some of the worst melt downs we've had in ages. What a mess. Starting school comes with both good and bad multiplied by about a million (slight exaggeration I know - LOL). I like it because I get a much need break from the chaos. But I hate it because the major battles begin once again. The worst is that we haven't even started with homework yet (that won't be for a few more days - oh joy of joys!!!). This year could be a real deal breaker. The concepts start to become more abstract, the work is harder and more of it, the teachers less forgiving, on top of it we have a new Principal and obviously a new grade and teacher. The stress level has been high around here for several days.
The one thing that I hope will be a real plus for him this year is that his teacher has a special ed endorsement. He's in a regular education class but the teacher has had extra training in special education. I hope this becomes a positive thing for him and his success this school year. We will have to see - for now we are cautiously treading water. Maybe the large waves will gives a break for awhile - cross our fingers and throw me a life jacket!
The one thing that I hope will be a real plus for him this year is that his teacher has a special ed endorsement. He's in a regular education class but the teacher has had extra training in special education. I hope this becomes a positive thing for him and his success this school year. We will have to see - for now we are cautiously treading water. Maybe the large waves will gives a break for awhile - cross our fingers and throw me a life jacket!
Sunday, June 24, 2012
Sunday, June 10, 2012
The Dance!!
Why is it that it is
so easy to dance around the issue but not put a name on it. For two years now
we have been working with “professionals” to find appropriate help for OLA.
They have given him an alphabet soup set of labels. But refuse to give the one
label that should most likely be on there – something on the FASD
spectrum. The behavioral specialist even went as far as to say we were
“definitely seeing FAE” but when the papers from his office arrived was FAE
listed anywhere – NO! The geneticist told us that if they ruled out
everything else they were testing for then it would be FAS. Have we ever seen
paper work stating FAS - even though we received paper work ruling
everything else out- NO! They dance and they dance and they dance but refuse to
admit to the elephant that is sitting smack dab in the middle of the room. Why
is it so hard to call a duck a duck – why do they insist that it is a goose.
This is what I wrote on a list serve group last night. It has been a very long couple of years. It is so frustrating to be playing this game. I just don't understand why those we've seen can not seem to admit to what seems obvious to me. Are they afraid that the label will bite them. You can't kill a dragon with a mouse trap. It is much easier to tame a dragon when you see it for what it is.
No the label won't change the behaviors and other issues but it would eliminate those things that aren't remotely helpful. Every time we see a different specialist we start out with such high hopes that maybe we are on the right road. The last two years (and more before we knew what was going on) we have danced this dance time and again. It has been a very long and exhausting road with no real end in sight. Dancing in the waves holds no joy when you feel like you are drowning.
This is what I wrote on a list serve group last night. It has been a very long couple of years. It is so frustrating to be playing this game. I just don't understand why those we've seen can not seem to admit to what seems obvious to me. Are they afraid that the label will bite them. You can't kill a dragon with a mouse trap. It is much easier to tame a dragon when you see it for what it is.
No the label won't change the behaviors and other issues but it would eliminate those things that aren't remotely helpful. Every time we see a different specialist we start out with such high hopes that maybe we are on the right road. The last two years (and more before we knew what was going on) we have danced this dance time and again. It has been a very long and exhausting road with no real end in sight. Dancing in the waves holds no joy when you feel like you are drowning.
Monday, May 21, 2012
Burnout!!
I feel so tired and burned out. I feel stressed and depressed. It seems that for every three steps that we take forward we take two backwards. Yesterday morning was the first Sunday morning in months that was actually relaxing. It was the first time in months that I haven't gone to church worrying about what OLA would do and who would be making a judgement call about my parenting when he was running up and down the hall or misbehaving. It was the first Sunday morning in months that my stomach wasn't tied in knots and I didn't have a massive tension headache. It was a relief to just stay home and not have to do any damage control or intervention.
Now I'm torn between really liking church itself (so wanting to go) and just staying home so I don't have to fight those giant waves every week. I wish things were different some how but they are not. There really isn't any relief and no one I can really turn too. I feel so very isolated. There really isn't anyone who understands the how depressed I feel or how much my heart is breaking. I don't very often vocalize my needs when OLA's needs are so great. But I need understanding and a listening ear. I need people to understand OLA and FASD. I need respite. I need friends not criticism and judgement.
I just want to cry - maybe like I said I'll quit swimming and just sink to the bottom. I'm so tired.
Now I'm torn between really liking church itself (so wanting to go) and just staying home so I don't have to fight those giant waves every week. I wish things were different some how but they are not. There really isn't any relief and no one I can really turn too. I feel so very isolated. There really isn't anyone who understands the how depressed I feel or how much my heart is breaking. I don't very often vocalize my needs when OLA's needs are so great. But I need understanding and a listening ear. I need people to understand OLA and FASD. I need respite. I need friends not criticism and judgement.
I just want to cry - maybe like I said I'll quit swimming and just sink to the bottom. I'm so tired.
Sunday, May 20, 2012
Sluffing!!!
Today, I am sluffing church. I said I was finished last week and I still feel that way. Although I would have been able to go without the stress of OLA. Both he and his BBA are sick today. I can leave BBA with OLA when they are both sick for a couple of hours. So it would have been a peaceful day. But, also gave me a perfect excuse to stay home. So I took it. I am really just tired. Some times swimming is just plain hard work. It has been a really rough couple of weeks. Coming up on the finale days of school for this year has really thrown OLA for a loop and keeping him on an even keel has been a dicey dance at best and an all out war at worst.
On a side note we are going to see the pediatric behavioral specialist (at the children's hospital) again tomorrow. I don't know which direction things will go as we work with him. OLA still is not on meds and in many ways that is good. But if there are meds out there that would help him regulate better (without major side effects:( ) that would be good as well. We have been approved for a service dog for OLA and are currently fundraising. However, the process is long and slow. The fact that OLA appears normal, I think, sometimes act as a deterrent to our progress. People tend to look at us like we are crazy when we talk about him having disabilities. And think that he has no need for the help a service dog can provide for him. But we keep pressing forward through the waves with faith that we will some how make it and make a difference for him.
But, the constant battles on one front or another make me tired and sometimes sad. So today I am sluffing church. We will have to see what next week brings.
On a side note we are going to see the pediatric behavioral specialist (at the children's hospital) again tomorrow. I don't know which direction things will go as we work with him. OLA still is not on meds and in many ways that is good. But if there are meds out there that would help him regulate better (without major side effects:( ) that would be good as well. We have been approved for a service dog for OLA and are currently fundraising. However, the process is long and slow. The fact that OLA appears normal, I think, sometimes act as a deterrent to our progress. People tend to look at us like we are crazy when we talk about him having disabilities. And think that he has no need for the help a service dog can provide for him. But we keep pressing forward through the waves with faith that we will some how make it and make a difference for him.
But, the constant battles on one front or another make me tired and sometimes sad. So today I am sluffing church. We will have to see what next week brings.
Sunday, May 13, 2012
Nothing Like . . . .
There is nothing like Mother's Day to make you feel like a failure. Today was one of those days where I think I'll just quit swimming and let myself drowned. I don't even want a life preserver tossed to me. Church has become one big colossal joke. OLA can't/won't (however you want to look at it) sit still, he won't stay in the children's class. I just don't want to fight it anymore. I'm so tired of the looks, the questions, and the if you would only? Let's face it when it comes to being a mother to OLA I am just one big, old failure. I obviously don't know how to get it right. I love that little man - I would do anything I thought was in his best interest for him - but obviously I'm no good at deciding what is best for him. Others have all the answers to what is best and I flunked that course in school. I hate Mother's Day and I hate Sundays. The wave was big today and I think I'll just sink to the bottom and never come up for air. I'm done!!!!
Thursday, April 26, 2012
What is FAE?
When we took OLA to see the behavioral specialist he told us that we were devefinently seeing some FAE. Now in the grand scheme of FASD the acronym FAE is becoming obsolete and being used less and less. In newer terms these children will often be listed as having ARND. Just a new way of saying that the child is living with the consequence of being prenatally exposed to alcohol. However, there are people out there who still use it. So what is FAE?
Definition: Fetal Alcohol Effects (FAE) is one of a spectrum of neurological impairments that can affect a child who has been exposed to alcohol in the womb. Children with FAE are not as obviously impaired as children diagnosed with Fetal Alcohol Syndrome (FAS) -- they usually lack the distinctive FAS facial features and have normal IQs -- and so FAE is sometimes described as less serious. Sadly, however, children with FAE are in fact more likely to have negative outcomes such as trouble with school, trouble with the law and teen pregnancy; the fact that they look "normal" but can't behave that way due to brain damage causes them to face unrealistic expectations without appropriate support, which can have serious repercussions for these children and their families. The term Fetal Alcohol Spectrum Disorder (FASD) is being used more and more to stress the fact that there are a variety of ways in which alcohol can affect a developing child and no particular set of impairments is "better" or "worse."
Definition: Alcohol-Related Neurodevelopmental Disorder (ARND) refers to the range of neurological impairments that can affect a child who has been exposed to alcohol in the womb.
Definition: Fetal Alcohol Syndrome (FAS) is one of a spectrum of neurological impairments that can affect a child who has been exposed to alcohol in the womb. Children with FAS have distinctive facial features that identify them as having alcohol-related damage, including a small head, flat philtrum, droopy eyelids, flat nose, and a face that looks a little bit too big for the head. Children with FAS may also have low IQs, but not always. Individuals who have been exposed to alcohol prenatally and have fetal-alcohol-related behaviors but not the facial features may be described as having Fetal Alcohol Effects (FAE) or Alcohol-Related Neurodevelopmental Disorder (ARND). The term Fetal Alcohol Spectrum Disorder (FASD) is being used more and more to stress the fact that there are a variety of ways in which alcohol can affect a developing child and no particular set of impairments is "better" or "worse."
Definition: Fetal Alcohol Spectrum Disorder (FASD) refers to the range of neurological impairments that can affect a child who has been exposed to alcohol in the womb. A number of factors, including how much the mother drank and at what point during the pregnancy, can influence the severity of the impairments and what functions they most affect. Children with FASD can display symptoms of ADHD, autism, Asperger syndrome, Tourette's syndrome, epilepsy, mental retardation and various psychiatric disorders, but will often not respond to traditional treatments for those disabilities.
FASD was formerly referred to as Fetal Alcohol Syndrome and Fetal Alcohol Effects, but the new designation better indicates the range of abilities and disabilities experienced by individuals exposed to alcohol in utero.
Also Known As: Fetal Alcohol Syndrome, Fetal Alcohol Effects, Alcohol Related Neurodevelopmental Disorder, Partial Fetal Alcohol Syndrome, prenatal alcohol exposure.
Alternate Spellings: Foetal Alcohol Syndrome, Foetal Alcohol Effects, Foetal Alcohol Spectrum Disorder.
So at this point the Geneticist is saying most likely FAS and the behavioral specialist is saying FAE. Who's right - in a sense they both are. He is reaping the rewards of the alcohol he had before he was even born.
Either way he has disabilities caused by the prenatal exposure to acohol. On a practical note we would like to see the diagnosis of FAS because it is the one that will allow him to have access to greater services.
Definition: Fetal Alcohol Effects (FAE) is one of a spectrum of neurological impairments that can affect a child who has been exposed to alcohol in the womb. Children with FAE are not as obviously impaired as children diagnosed with Fetal Alcohol Syndrome (FAS) -- they usually lack the distinctive FAS facial features and have normal IQs -- and so FAE is sometimes described as less serious. Sadly, however, children with FAE are in fact more likely to have negative outcomes such as trouble with school, trouble with the law and teen pregnancy; the fact that they look "normal" but can't behave that way due to brain damage causes them to face unrealistic expectations without appropriate support, which can have serious repercussions for these children and their families. The term Fetal Alcohol Spectrum Disorder (FASD) is being used more and more to stress the fact that there are a variety of ways in which alcohol can affect a developing child and no particular set of impairments is "better" or "worse."
Definition: Alcohol-Related Neurodevelopmental Disorder (ARND) refers to the range of neurological impairments that can affect a child who has been exposed to alcohol in the womb.
Also Known As: Fetal Alcohol Spectrum Disorder, Fetal Alcohol Syndrome, Fetal Alcohol Effects, Alcohol Related Neurodevelopmental Delays, Partial Fetal Alcohol Syndrome, prenatal alcohol exposure
Definition: Fetal Alcohol Syndrome (FAS) is one of a spectrum of neurological impairments that can affect a child who has been exposed to alcohol in the womb. Children with FAS have distinctive facial features that identify them as having alcohol-related damage, including a small head, flat philtrum, droopy eyelids, flat nose, and a face that looks a little bit too big for the head. Children with FAS may also have low IQs, but not always. Individuals who have been exposed to alcohol prenatally and have fetal-alcohol-related behaviors but not the facial features may be described as having Fetal Alcohol Effects (FAE) or Alcohol-Related Neurodevelopmental Disorder (ARND). The term Fetal Alcohol Spectrum Disorder (FASD) is being used more and more to stress the fact that there are a variety of ways in which alcohol can affect a developing child and no particular set of impairments is "better" or "worse."
Definition: Fetal Alcohol Spectrum Disorder (FASD) refers to the range of neurological impairments that can affect a child who has been exposed to alcohol in the womb. A number of factors, including how much the mother drank and at what point during the pregnancy, can influence the severity of the impairments and what functions they most affect. Children with FASD can display symptoms of ADHD, autism, Asperger syndrome, Tourette's syndrome, epilepsy, mental retardation and various psychiatric disorders, but will often not respond to traditional treatments for those disabilities.
FASD was formerly referred to as Fetal Alcohol Syndrome and Fetal Alcohol Effects, but the new designation better indicates the range of abilities and disabilities experienced by individuals exposed to alcohol in utero.
Also Known As: Fetal Alcohol Syndrome, Fetal Alcohol Effects, Alcohol Related Neurodevelopmental Disorder, Partial Fetal Alcohol Syndrome, prenatal alcohol exposure.
Alternate Spellings: Foetal Alcohol Syndrome, Foetal Alcohol Effects, Foetal Alcohol Spectrum Disorder.
So at this point the Geneticist is saying most likely FAS and the behavioral specialist is saying FAE. Who's right - in a sense they both are. He is reaping the rewards of the alcohol he had before he was even born.
Either way he has disabilities caused by the prenatal exposure to acohol. On a practical note we would like to see the diagnosis of FAS because it is the one that will allow him to have access to greater services.
Monday, April 23, 2012
Wednesday, March 28, 2012
School Policy!!!
It has been awhile since I have posted. Life has been ultra crazy around hear the last six weeks. But we survive. The fight with the school district goes on. A week and a half ago we received a letter in the mail from the district. That OLA had missed 11 days of school and had 36 tardies. (really no kidding -wasn't aware of that - LOL). and that we need to contact the school ASAP (i.e. within 3days - during spring break- yeah because someone would be there to take the call) to set up a meeting with the school about the importance of my child attending school and being on time.
I nearly blew a gasket. What in the **** do they think all of these meeting have been about this year and half of last. My initial reaction was to tear up the letter and throw it in the trash. But I decided I ought to at least show it to my husband. I did and told him I wasn't calling anyone - I was done talking. He said that he would call. Which he did yesterday. We didn't really get anywhere - they didn't set up a meeting and we really didn't get any additional ideas. So I'm going to just let it ride for now.
And on top of everything else I found out that OLA current principle is leaving at the end of the year. This could be good or bad. Good because maybe we will get some fresh ideas. But bad in the sense that we are going to have to start all over from ground zero - so who knows. One more wave to swim through.
I nearly blew a gasket. What in the **** do they think all of these meeting have been about this year and half of last. My initial reaction was to tear up the letter and throw it in the trash. But I decided I ought to at least show it to my husband. I did and told him I wasn't calling anyone - I was done talking. He said that he would call. Which he did yesterday. We didn't really get anywhere - they didn't set up a meeting and we really didn't get any additional ideas. So I'm going to just let it ride for now.
And on top of everything else I found out that OLA current principle is leaving at the end of the year. This could be good or bad. Good because maybe we will get some fresh ideas. But bad in the sense that we are going to have to start all over from ground zero - so who knows. One more wave to swim through.
Thursday, February 23, 2012
The Heart Break of a Child
There are a lot of heart aches that go with parenting children and especially children who have extra struggles. But one of the hardest is watching your own child's heart break. Over the summer OLA's best friend from Kindergarten and First Grade moved away. We spent many hours praying that he would find another really good friend and we thought he had. But about two weeks ago there was an incident at school. It was while the two of them where goofing around and purely accidental. But it put the brakes on that friendship. The incident wasn't a recurrence of behaviors and both boys stories (told separately and before they saw each other again) where almost identical in nature (we know this from talking to the other boy's parents) but the results where the same as if it was all OLA's fault and as if this was a repeat problem. The hardest part was the other day when OLA got in the car and promptly announced "Mom, J. can't come to my birthday party because his parents told him he can't play with me anymore." I was stunned to say the least - because his birthday is still seven weeks away, and because we had talked to his parents. J's parents had assured us that they understood children who occasionally miss social clues because they have a child that does this (I don't think so - big fat lie!!!). And also because the incident was accidental and both boys stories matched. It about broke my heart to see this absolute rejection. The saddest part is that J has always excepted OLA with all his little quirks, the incident was neither boys fault, and J was willing to just move on and so was OLA. Unfortunately J's parents aren't - although they said everything was okay and worked out. And the two of them can't even really do things together at school because J would get in trouble - his mom works at the school- unless it is an in class assignment. How sad. =( It would have been easier to accept it if the incident was a repeat occurrence or even not accidental. I guess we are still praying for a friend who can accept OLA as he is and maybe truly show him the ropes when it comes to social situations. I guess I'd better pray for a couple of parents who also understand in the deal. Mean while we will keep trying to help him learn to better read and understand those cues too.
(and in case anyone was wondering - I was purposely vague as to the nature of the offense. In behalf of OLA's feelings on the matter.)
(and in case anyone was wondering - I was purposely vague as to the nature of the offense. In behalf of OLA's feelings on the matter.)
Wednesday, February 22, 2012
The School Game
This week we received OLA's midterm report paper. It came as no surprise that his spelling scores are down. That his language art's scores are down ( he doesn't get contractions). And he is having trouble counting money. But according to the powers that be he just needs to slow down because they've seen him count money and know that he can do it. (He can do it some days but not others). The same is being said of spelling - he just needs to slow down and think about what they have been studying- never mind that his spelling has never been great:( . Also the statement was made that he needs to work on his handwriting neatness - Have they been listening at all this year. Handwriting is difficult for him - this is why I have been scribing for him!!!!!!!! Can I scream (AAAAAAAHHHH!!!!) and throw things. While they think I'm not winning any mother of the year awards (and maybe I'm not), they continue to tune out anything I say, don't bother to read any of the reports from his medical records (they have these in his file), and are convinced that they are just going to fix OLA -because I obviously can't!! (Another big huge scream - AAAAAAHHHHHH!!!!). I think I'll take up surfing and learn to ride the waves. (LOL)
Monday, January 16, 2012
Where's the life jacket when you need it!!!
Today has been a day from ****. OLA has been home from school for six straight days. He missed Wednesday and Thursday last week because he was sick. Friday was a teacher work day. Then came the weekend and Today was suppose to be a snow make-up day. But since we haven't had all that much snow it wasn't needed and therefore the kids didn't go to school. To top everything off Dad left this morning for a week long business trip. He is so out of routine that our day started by him calling me several names after I told him he couldn't play club penguin on the computer because he hadn't eaten breakfast and he hadn't finished any of his school work from Wednesday and Thursday even though I have asked him multiple time this weekend. It all went down hill from there. It is now almost seven o'clock in the evening - he still hasn't played club penguin and the homework still isn't done. I only have to last ninety more minutes until bedtime (I hope I make it). And I plan on sending all his work back to school tomorrow undone - he will miss all of his recesses to get it finished - since there is to much for him to complete in just a couple of minutes. I am just to tired to have this battle - it is a know win situation for me. His room is also a complete wreck because I wouldn't let him do something else that he wanted. And I have been bit, slapped, shoved and hit with each successive no today. He hasn't had this bad of a meltdown for quite awhile. It is days like today that I feel so angry about what the alcohol has done to my child. Why can't I just have a normal child like most of the rest of the world. Today I'm drowning in a pity party and am having a tough time not feeling sorry for myself. I can't do that very often because it doesn't allow me to effectively advocate for him. But there is no life jack for me and I'm not sure anyone would care to throw me one if there was. Ninety minutes - just ninety minutes!!!
Monday, January 9, 2012
Hyper Drive!!!
It has been a while since I've posted. We survived the holidays- just barely. OLA really struggled this year to keep it together. Despite the struggles we did have a really great Christmas Eve and Christmas Day. But December 26th and 27th were not as nice. We hit the over drive period from the two previous days. OLA had done so well on the 24th and 25th that we had told him and BBA that we would leave the tree up until Wednesday evening. However he had struggled so much to keep it together both Monday and Tuesday that by first thing Wednesday morning the tree had to come down. It really helped he did well for the rest of the break - even church. The only exception was Sunday night when he realized that he would have to return to school the next day. Then once again things turned a little bit crazy.
We did however have the blessing of two quiet Sundays. Two Sundays in a row without major incidents at church. But, alas, it was not a permanent thing (not that we thought it would be - but were wondering if we could make it three) yesterday was chaotic to say the least. OLA was wound tighter than a spring and going at a hundred miles and hour all day long - even hours after returning from church. So I guess it is back to normal around here - what ever normal is these days! :)
We did however have the blessing of two quiet Sundays. Two Sundays in a row without major incidents at church. But, alas, it was not a permanent thing (not that we thought it would be - but were wondering if we could make it three) yesterday was chaotic to say the least. OLA was wound tighter than a spring and going at a hundred miles and hour all day long - even hours after returning from church. So I guess it is back to normal around here - what ever normal is these days! :)
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