The Deepest Abysses of Hell

Wow it has been ages since I have written here. Not because I have had a sudden need to no longer write about the craziness that is our life. But because life is crazy. We have been so busy lately that there hasn't been time for writing. That however doesn't mean that OLA has changed. He hasn't. Some things have improved other seem to have increased in epic proportion. But yesterday was one of those days that we were once again thrown into the full scale of battle and are slogging through the trenches. Church has always been a bit of a battle ground when it comes to OLA. But some weeks are better than others. But at this point it may not be a battle ground anymore.
In talking to someone working in our children's group OLA has more or less about made himself a persona non gratis there. Unfortunately the adults are not necessarily wrong in saying he might not be welcome there if the behaviors don't change (which unfortunately they probably won't) I hate when they serve it up with a bunch of so called well meaning platitudes. I get tired of being told that they all understand - they don't. You can never understand the living hell our lives can be unless you've walked in our shoes and parented a child who is like this. I cannot undo the damage that alcohol has done to my son. I cannot make him behave like a neurotypical child. I cannot change the choices that his birthmother made when she was pregnant. I cannot change any of these things no matter how much I wish it or how much my heart aches that it could be so.
As I talked to this adult they did not tell me anything I did not already know. There was nothing new to us about his behaviors.  But that wasn't the only thing that remained old news it was the same old song by adults who really have no time or interest in understanding why he behaves the way he does. It was the same old words "I know he understands the difference between right and wrong." "I know he can control himself", "I know he understands what he should be doing", "I know he is capable of doing what he should" .  It never changes - know matter how many times I say Knowing, processing, and actually being able to do are all different things. Things that his brain can't always manage. They are all still trying to fix my child based on the expectations that he will behave "age appropriate and as if he were a neurotypical child.
At this point I don't know who I'm more frustrated with OLA or the adults. I feel once again like I am drowning in the deepest, darkest, most ugly abyss in Hell. There is no escaping this reality that I live in everyday. And if you are raising neurotypical kids there is nothing you can tell me about OLA's behaviors that I haven't already seen, heard, felt or lived with in some form or fashion over the last ten and a half years. I have been in the trenches for that long I know far better than you will ever know. But with rare exception I also know more about my sons struggles and disabilities than you will ever care to try and learn. There is pain there that only another mother raising a child like OLA could ever understand. It is so deep and sharp and it rarely ever sleeps. Almost every waking moment of every day it filled with pain, worry, and fear for my child and his future. There are no platitudes that you can give that will change this or the damage that alcohol has done. He is a victim as much as all of those around him that he lash out at for reasons only God knows. Alcohol has permanently scared all our lives. Even though for us none of us drink.
To quote a popular movie - A kingdom of Isolation - that is what we are starting to inhabit. The list of things that we no longer or seldomly participate in anymore continues to grow. And as much as it grieves my heart to think about church may soon very well be on that ever growing list. We are an island a drift in a sea of isolation and nothingness. Eventually we will drift right off any existing map.
Darkness, Darkness, Darkness is all that is found in the deepest depth of the abysses of Hell.

Living in the Nightmare

There are times in my life where I wish I could wake up and find it all a dream. Yesterday was one of those times. The nightmare started at 9:30 yesterday morning. I was getting ready to leave the house when the phone rang. It was one of OLA's third grade teachers. He had gone to science and forgotten his science notebook. She ask him to return to his home class and get it because they where wrapping up some experiments and would need them to record the results. He left to do so and she started the class. He searched both his desk and his locker and could not find his notebook. When he could not find what he needed he didn't return to class, but instead he stood in the hall for the next forty-five minutes to an hour. He didn't want to get yelled at by the teacher or teased by his classmates so the solution was not to return at all.  The worst part was the teacher didn't realize that he hadn't returned. When she called me he had missed all of the lecture he needed to complete that part of his notebook, but she was going to send it home for homework.  Not cool!!! I ask her if I could bring the notebook over to him. She said "no, it was his responsibility and he could just do it as homework". I knew this was not going to be pretty. And it wasn't. When OLA got in the van after school the first thing he said to me was "you stupid butt head, why didn't you bring my notebook over, now I have to do it as homework." I told him that his teacher wouldn't let me. He told me his teacher was an idiot. Then it all went down hill from there. He cycled on and off  for the rest of the night. It ended at about the same time that night that it had started. But it ended when we had to call the police. We have always hoped it would not come to this - but alas, it was not to be avoided. But if in all this insanity there are small miracles we got one last night. The officer that responded to the call was a godsend. He and his wife have adopted three children and two of them were drug and alcohol exposed in utero. He was able to understand the situation without a lot of extra explanations. And he was able to diffuse the situation and help OLA return to a state of equilibrium. I wish I could say this would be the only time we would have to ask help from the police- but unfortunately I doubt it will be. The nightmare continues and the waves are coming hard and fast.

Surviving

It has been a while since I posted. The holidays have come and gone. And thankfully it was relatively quiet. We really toned down what we did this year and it seemed to help OLA deal with everything better even the arrival of a new little someone in our house hold(we are foster parents). But things have still been up and down. Especially, with school. It also hasn't helped that at the end of November my husband was told that sometime in the second half of this year eighty jobs are disappearing - including his. So OLA is having to deal with major thoughts of change - including moving.  It has added a new level of stress to our lives. What fun for us! 
We are also starting to see more open slips at school when it comes to understanding and getting things done. But, as parents we are still looked at as people who are to stupid to know our own child. In other words they are still convinced that if we will just shut-up and leave them alone they will fix whatever ails OLA. It is more than just a little frustrating!!  SCREAM, SCREAM, SCREAM!!! I'm dog paddling now in hopes to ride out yet another set of waves. Maybe, I'll learn to surf.

You can't wear that?!!!

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!!!!!!!!!!!

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.

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.

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.