What really matters

Life with children who are damaged by alcohol is never dull. It isn't always fun, but it isn't always bad either. Much like normal peers they have good days and bad days. On some days they may appear to be functioning on all cylinders and others they may have difficulty with daily functions.Today they may know the alphabet, tomorrow they cant remember. They are often impulsive. There is no thinking before actions. They dont have any associations for what might happen after they do something. they just do it. no if/then, no cause and effect. Kids who are alcohol damaged can look very different from other kids visually, and have few effects of the alcohol. Conversely they can look just like everyone else and be SEVERELY damaged. They can fall anywhere in between. some kids are able to function pretty normally. others arent.

In our family, our alcohol damaged kids all have a difficult time academically. Some more than others. Teaching them requires a lot of repetition. Remember they frequently have short term memory loss. its hard to progress when each academic area builds on previous topics mastered. if you cant remember how to do that topic you previously mastered, learning the next step is difficult. It is often one step forward and one step back. repetition, repetition, repetition is key. Getting them to do things routinely, academically or otherwise can take years. We also see a lot of impulisvity. not think then act, rather just act. if you want something you see you just grab it before you even realise what you plan to do with it. We have lost countless items because they were nabbed by our alcohol damaged kids and then they cant remember what they did with them. I would imagine our woods are full of tools taken from the garage. household items removed from the house on the sly. (oh yes they are very sneaky)

We have the same conversations over and over ad nauseum. daily, weekly, monthly, yearly. and yet nothing changes. Changes take a long time. A very long time. it is often said of kids with alcohol damaged brains that if you will want them to do something regularly in the future start including it much earlier than necessary so when it IS necessary it has already a honed skill. Things such as showering daily and wearing deoderant.

Who needs sleep? not them apparently. one wakes crying every single night, is unable to cope with even the slightest changes. if his socks are bunchy or his blanket fell down, or someone went to the bathroom, or the wind blew, or he rolled, or ANYTHING. Another one goes to sleep well, but then wakes and is up for hours in the night. always has been. Another doesnt go to sleep. even with an adult sized dose of sedative medication he is still wired hours later.  if he does fall asleep he wakes with every sound. with a large family, there are often late night bathroom trips from someone. every single time these wake him.  When they are awake in the night they often forage the cabinets and refrigerator, eating everything in sight. One morning I found a boy asleep in his bed with chocolate chips in a bowl next to him, chocolate all over his face, and chest and bed. Not one other child was covered in chocolate, but that child swore up and down it wasnt him that ate the chocolate.

that leads me to another issue, lies. In the same vein of the chocolate, one of them blamed another child for wetting his pants. no, they can not take responsibility for ANYTHING. if its lost, it isnt their fault. the lost thing must be to blame. If they don't know where belongings are it must be someone elses fault for moving them, it couldnt be because they didnt put them where they belong. Lieing is a frequent occurance in this house. I try not to give them opportunity. I dont ask questions that would lead to a lie. if I already know who broke the lamp I wont ask who broke the lamp. It is often very obvious when one is lieing. yet they keep trying. they scrunch up their face or look off to the left every single time but they do it again in five minutes, even after getting caught.

These are all hard hard things to live with, but these kids who have been brain damaged are the most loving kids, the sweetest, huggingest, most lovable,friendly kids. They are outgoing and smile, never met a stranger(incredibly dangerous for them). they dont know how to maintain close friendships but they are always outgoing to people they meet. I must hear a million times a day "I love you Mama."

They think of some really out of the box solutions for things because they do not think like everyone else does.  They like to help. They dont really know how to play imaginatively(they do, however, have "magical thinking" at least at this point. which means they cant really distinguish between fantasy and reality) Because they dont know how to play they love to work. they love to keep busy.  If left to their own devices it often leads to trouble. but kept busy they will be happy all day. not every child, every day wants to work at things, but overall they are good workers. 

As you can see life with kids damaged before birth is hard. It's fun and funny too. It's loving and sweet. It's not what we planned, it's not what we expected, but it's pure love in so many forms, and that is what really matters. Love. Love is what matters most in their lives and ours. We love them despite their disabilities, despite their difficultes, and in some cases because of them. In return they love us freely and without restraint. I wouldnt wish alcohol related deficits on anyone, but I just can't imagine life without the love of my alcohol damaged kids. 

Fas Fun

well andre was up bright and early this morning. at 430. after he peed his bed he got hungry. so he snuck in the kitchen and ate half the cheese. but then he couldnt see so he lit a candle. with a romantic glow he ate half of a large loaf of banana bread. at some point he must have been cold because he tossed some paper(I hope it was useless paper and not important paper) into the fireplace. skittered back to his bead with crumbs on his lips when he heard me on the stairs. so I am up. for the day I guess. I really HATE starting my day at 430. its bad enough having to get up at 530. I have sophie home today and she nags me every 5 minutes is I try to sleep. besides her AFO is busted and I have to go downtown to get that fixed as well as the pharmacy to get meds. good thing anyways since the house smells like smoke now.

I guess I will have to take the matches to bed with me now. that doesnt keep him from tossing things into the fire. time to buy a new alarm for his door. I need a threshhold alarm. so if he crosses the sensor it lets me know. so far we have only tried wake the entire house alarms. Ethan slept all night but not Andre. if Andre sleeps all night, not Ethan. he is a famous midnight snacker and gets into things too. FAS anyone? so much fun! NOT! and why when I take them to the doctor and say they dont sleep, they just nod and smile and refuse to prescribe anything? I need sleep to function!!! so last night since we went out, I got a whole four hours sleep before Andre started his crap. only 4 more hours till he goes to school. where he doesnt know 17 our of 24 letters and smiles sweetly at his teacher and she is sure he will do just fine.