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 20, 2012
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
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
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
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.
The bean bag was ripped and completely unstuffed - its contents all over the floor.
Friday, November 9, 2012
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 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!!