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Our Lady of Perpetual Wedgie
katie8471
http://teespring.com/runfeetrun   if you read this please go and look at the tshirts we are selling for sophie to raise enough money to take her to a conference for people with her condition. She really deserves to go. SHe has worked so hard and been through so much pain. She needs to be with people who understand that this isnt like your brothers friends cousins neighbors milk man who had a broken leg once. People who understand this is a lifelong issue and a lifelong battle. She needs to see people with her condition who have jobs, have children, and husbands and live the American dream.

http://www.gofundme.com/2bpy20 is also a fundraiser for the same conference. We have to have all reservations in by May 28 for July conference. I am a very giving person. I give everywhere I can. I help anyone who needs it. This time, not for me, but for my daughter, I am asking for help.

So far we have had 3 donations and 2 commitments to buy shirts if we reach our goal. If we do not reach our goal no shirts will be printed. we do not even have enough for ONE plane ticket, much less hotel costs conference fees meals and a ticket for Me to take her.
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katie8471
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. 

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katie8471
hello sunshine. wake up sleepyhead.  
I have been sick. not fun. slept from about 6 friday night till about 8 sat morn flippin and flopping and fever dreams. feeling better today but stll feeling feverish off and on. So I didnt go anywhere. Put all the toys in Sophie's room since they seem to like playing there. She loves having everyone in her room. As long as I can still get her wheelchair in to put her to bed it should be fine. I was going to leave the trundle bed up for Chrysta but she wont be back for a month so why should we all put everything on hold until then? we can always pop the trundle up again when she comes. She will probably have a fit to share what she still deems HER space. Then again she will probably be so busy running here and there with this one and that one and seeing all her nonfriends while she is here she wont have time to complain. (I say nonfriends because she always whined about not having any friends but when she left suddenly she had dozens of friends she had to say goodbye to, and visit while she is here.)

Eric took three kids to the Tweed today(art museum) and dropped a fourth at a friends. Chrysta is no longer here, Cody is at Grandma's so life here this afternoon is VERY quiet with only 4 kids. Some people would say FOUR? ONLY FOUR? but when ten is the norm four is quiet. Ben and Sophie play well together and play a lot together. Natasha likes to cook and hang with me and Jaeger loves tv. So for the moment Jaeg and Natash are watching tv and Ben and Sophie are playing. Natasha and I got a carrot cake in the oven, She cleaned up the living room and brought up the trees, waiting for daddy to come home to put them up. Diana is staying at her friends house for dinner. They are having her MOST UNFAVORITE MEAL. Spaghetti. I am looking forward to hearing all about it. lol. I am planning a shephards pie of sorts for dinner with leftovers from thanksgiving. Stuffing, chicken, sweet potatoes, carrots(leftover shreds from the cake)and mashed potatos on top. No corn pudding because Diana ate it all! there wasnt any left she loved it so much on Thanksgiving that she finished what was left in the pot instead of putting it away.

I have to get my van fixed this week sometime. I hope I can get it scheduled. Tuesday I have appt with Ethan for psych testing start. Weds is PT and OT for Sophie and I have cancelled so many times in recent weeks I am afraid I will lose our time slot if I cancel again! but the four Ukies have to go to the twin cities to see their specialist next week and there is now snow on the ground so I cant risk the van konking out on the way hours from home.

Tuesday night is a FASD support group I am wanting to go to. Ideas and relating to people who get what its like to live with these kids is what I look forward to.  Last night we sent AJ to bed early for saying he was going to kill someone if he had a gun.  he is 9 with a body like a 4 year old which makes it even more puzzling that he is the way he is. IQ is low.  body is small, head is small, impulsivity runs high, I really just dont understand what makes him tick.  so I hope this once a month support group can become a regular event for me to even just be able to say AJ does______ and it drives me crazy.  and people wont say aww hes a normal kid. all kids do that. etc etc. and well you wanted him. (yeah because I wanted him I am not allowed to say I am frustrated or need help. thats not the way it is for BIRTH kids, no for them you are supposed to get all the help you need and if your kid is different you get health care and respite and support. but if they are adopted you are supposed to suffer silently. That isnt fair. I am guessing many of the parents attending this meeting will be adoptive parents. Although there are some parents who have kids with FAS and manage to straighten up and raise them.

I guess I dont have much more to report today. I am out of words I guess. Fabio in the pic is no longer with us. He moved to greener pastures, ie: he went to pee on someone elses floor. I hope he is happy there because I loved him but after YEARS of training he wasnt getting it. Java, our 6 month old mix breed sits at the door, any door, and barks if she wants out. she has piddled ONE time in the house and that was when I wouldnt let her out because the bus was out there. She DID tell me.

Current Mood: complacent complacent

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katie8471
in loking through my "friends" on here I see that most of them havent posted in years. I wonder who they are, where they went, what they have become. Some I still talk to elsewhere on the web. Some I have completely lost touch with, and some I cant even remember who they were or why I enjoyed reading their days.

I miss the community feel of LJ. Here is an update on our family for those who still read. or maybe for someone new reading.  Chrysta as mentioned, moved to her dads. she is 16. YIKES! 16!!! can't even believe my tiny baby in frilly dresses(from DAY ONE!) is 16! i miss her. Cody is 18 and we recently had the honor and joy of taking him to register and vote. He had a hard time with our move last year but seems to be coming around. AJ(aka Andre) is 9. Ben is 9. Diana is 9 but will be 10 sunday! Ethan is 10. Jaeger is 10. Maia is 8. Natasha is 10. Sophie is 6.

various special needs among them including, anxiety, depression, FAS, PTSD, autism like behaviors, medical needs,arthrogryposis. Life is busy but mostly happy.  we have fun together.  we have doctor appointments, therapy appointments, dental appointments. we play, we work, we have problems and conflicts. we solve them and move on as best we can.
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katie8471
image201211140001
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katie8471
nose Need to make dinner for the kids. hauled wood today, did laundry all day, fed chickens(4 eggs!), and generally kept busy. Made two boys write sentences because they were disrespectful this am before school. Next time I think I will have them write me a letter of apology. Chrysta is missing home. is finding out grass isnt always greener. no friends yet. sorry to hear it but this is the bed she chose... and I am not ready to send this house back into upheaval for her to come back. she said she wants to stay for this year and next and come back and graduate here. I said I didnt think that was a good idea. all this changing schools. Once she gets her license it will be easier for her to do things. but right now she is bored. We talked for awhile and she spoke to her sibs the other day. Maia had a really hard time with her leaving. Its her only bio sister. they used to share a room, share a bed even. they were never far apart. she really looked up to her ceecee. since I dont drink coke anymore I need to change my user pics. no pancreatitis for close to a year but I am still nervous and dont dare start back where I was. I lost so much weight I dont want to go back to big either. so no coke. need to make mashed potatoes for the chicken dinner.

Current Mood: busy busy

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katie8471
hurts today but I love it. hurt more in the night than the actual piercing. but I have wanted to do it for so long. (right Mardi?) Im so glad I did. Eric was never sure he was on board but now says its cute and he likes it. Life is getting back to normal without Chrysta. I still miss her. she doesnt call me. I called her one day last week and she wasnt very talkative. She calls my mom every day though. Java my all puppy all the time girl is wild today. she just launched the cat off the back of the recliner. cat was pissed. Chickens are laying eggs every day. got 6 today. one was still warm. Sophie has PT and OT today. Tomorrow hopefully I can have a day to just stay home and sit by my fire! doesnt seem like too many people are on LJ anymore. Maybe I need new lj friends. the old ones dont post much. I dont even post much. but I like this forum.
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katie8471
167

much of their personalities are the same but there are subtle differences there also.
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katie8471
Since my pancreatitis episodes and abcess and central line and infuzions, and a month in the hospital, I am finally better. I lost a lot of weight. I am working hard to lose more. down from about 180 to 160. trying so hard but cant get over that hump to the 150s. I stopped drinking soda altogether. Cant even remember last soda I had. I think probably december before I got sick. I dont eat red meat at all. I will eat chicken or fish. I am trying very hard to create new habits and fight old bad ones. I dont allow myself to eat out during the day. If Eric and I go out to dinner thats fine but no stops at fast food. either eat before I go or wait till I get home. but no crappy food. I also cant drink wine anymore. I cant eat high fat foods. either one could cause my pancreatitis to recur. and another stint in the hospital does not sound like fun to me. now if the weather would cooperate and the schedule gods would align so I could get some walking in every day. Our driveway is 1/3 mile long so down and back twice is 1 and 1/3 miles but I usually go down the highway and get about 3-5 miles in depending which way I go. considering a treadmill or elliptical machine. Since we redid the living room we left out some furniture so there would be room for one. I worry though about a treadmill because my little boys are so curious and kids can get really hurt on those. but I NEED to move. there has to be a balance. well since Sophie(queenie) has therapy today(OT/PT) and its ten already I better get us dressed and get some laundry done before we have to go.
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katie8471
http://reecesrainbow.org/alicia1102
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katie8471
it is very annoying when people only talk to me because my husband is a doctor.
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katie8471
always tired. sleep? always interrupted. day of rest? no such thing.
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katie8471
again. man I am exhausted. I am almost HOPING they put him back in plaster to give that ulcer time to heal. and to give us some peace and sleep and start over. only 15 days until we go back only 15 days!
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katie8471
How would you describe your perfect evening in six words (e.g., I stayed home and ate pasta)?


Plenty of sleep for this mama!

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katie8471
http://millelacsmessenger.com/index.php?option=com_content&view=article&id=35763:life-as-a-dozen&catid=60:columns&Itemid=79
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katie8471
The kids and I are comin home! its been a long two weeks here in Ukraine. and i miss my family and husband and dogs and house and yard and MILK! and water! and cooking meals that I like not just whats available.  I cant WAIT to go home!
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katie8471
Dossier is finished and ready to be sent. I didnt send it though because of the volcano eruption that is messing up air travel in Europe. Wouldnt go out until at least next week is my guess so I havent sent it.  very exciting to think about meeting up with our girls again!

in other news, Ben starts serial casting next week. only a little over a month of school left. Sophie sees Dr S in May to see about some splinting. My little sister is getting married May 1. I am taking the kids up there. Eric is on call.  Maia and Sophie are beside themselves with excitement about a new dress and matching shoes and going to the wedding. We took Maia Ben and Sophie to the zoo at como yesterday. they loved it. May 3 we go with their class to same zoo. wish I had a grandma or someone to come along. oh well. we will have fun just the four of us Im sure.
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katie8471
ourgirlsbyheart.blogspot.com
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katie8471
sophie you are my precious.
You are MY pwecious. My pwecious mommy.

ethan put on your socks please.
YOU TREAT ME LIKE A SLAVE!

Ben put a sucker in his mouth that he
got from the bank. and then stood up and said
TADAAAAH!
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katie8471
there is a video of the girls where I lifted the photos from. and the one girl says she really wants a mommy. and she wants a mommy to see what a wonderful girl she is.

oh be still my heart!
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