My daughters Story

MY DAUGHTER’S STORY01/05/2010Let me begin my story with first telling you that I feel like I am out of my mind. I have an 11 year old and she definitely has a problem. Through the years I have tried to get her help unsuccessfully. This has put a major strain on my family and work life. She is awesome and VERY intelligent. She tries to do good but at times has a lot of issues that i do not know how to deal with. I have been to Doctor after Doctor and therapist after Therapist. The area that we live in is kind of small and the Doctor agrees that there is an issue and has refered me to different therapists. I will begin by letting you know that on several of the scales that I have found she definitely has Asperger's Syndrome. But when I talked to the therapist he had never heard of it. That should have been a sure sign there to run like crazy. So I begin my journey to get her diagnosed so that I can get her the help she needs. To begin with I guess I should tell you a few of the things we go through daily.1- She does not sleep so waking her up for school is a major task. About an hour to get her out of the bed and another 30 minutes to get her dressed. This is a good day. Not to mention time to get her to eat and in the car with ALL of her school supplies to take her to school. (most of the time things are left and i have to take them to the school for her.2- At least once a week I have to either pick her up from school early or get a call saying she does not feel good and wants to leave early.( Already got the letter from the school board this year about absences)3- Her room is always destroyed and I have to come home to clean up at least a little so as not to argue with her stepfather about the mess. She always says it is not her fault that it is her older sisters fault,(older sister is a clean freak).4- Go to work and worry about getting the call to go get her.5- Rush home to be here before she gets home from school so that she doesn't take off. We live on a farm and she has a bad habit of going to the barns(afraid she will get hurt as the animals aren't always in the mood to have her around). 6- Also afraid that she will climb up into the barn and fall. She has no fear nor pain threshold. She has been hurt before and not come to tell me for a extended length of time.7- If she is here or not the the argument ensue to do home work, this usually takes about 3 hours.most of the time she says she has none till the last minute. Or the next morning and doesn't want to go to school because she does not have it done. Many times I have taken her to the Doctor only to find she is not sick just does not have her work done.8- I fix dinner only to have her refuse to eat what I have fixed and want to eat noodles only( Raman noodles), no matter what it is she won't eat it and we have a major fight.9- Argue some more because she has begun to hit her sister and threaten to hurt her sister or herself.Everything on this list is followed by threats of harm of us or herself.10- Fight to get her to bathe. She feels that she only needs to bathe once a week. If she does bathe she wants to wear the same clothing.( She fixates on one or two outfits a month and wears them till I hide them, I should also state here that she has a problem with her kidneys and bladder and see a specialist and needs complete retraining which she refuses to take seriously. So she has to wear pullups to bed. hence the need to bathe more often.)11- Bed time comes and that is when pardon the expression ALL HELL BREAKS LOOSE. She will NOT go to bed she screams and hits and fights until everyone else leaves her alone and she sits up most of the night tearing paper, taking apart toys, breaking things into parts, or tying string into webs around her bed.( What is she accidentally strangles herself.)This is just one day. Some are better and some are worse. She does other things that are not listed here.* When a family member died she laughed, But cried when her cat died, the crying lasted six hours we had to go to see her therapist. It is like the life of a human means nothing to her. She does not know how to express herself the appropriate ways when she is in social situations. She pouts when we have to go out and starts an argument so that we do not go. Many times she has thrown a tantrum in public and refused to eat or sit or walk. * She says thing that are very inappropriate. Calls people names including people that she has never met before she will says things like ugly, fat, nerd, stupid, ect.* She hits her sister and other children. She has no friends in school and has always wanted to be alone. If she decides that she wants to play with someone they have to be directed by her including saying exactly what she wants them to say and if they do not then she gets angry and screams or hits and refuses to play again. Then she just wants to be alone. Lining up her dolls and toys and angers easily if someone moves them. Her things are in disarray but she knows exactly where they are and does not want them touched. She looses everything that may be of importance, but can find things that aren’t important.* Remembers the most trivial things like phone numbers and dates but cannot remember when she is asked to do something. When giving her instructions you have to list them over and over again. IE: Go to your room and get your bed clothes. Then go get a towel and then go to the bathroom to take a shower. Put your dirty laundry in the wash. Comb your hair. Brush your teeth. Cut the light out. Go to bed.* Refuses to go out of the house to go to the store or go visit someone. Wants to be alone including in the car does not want to sit beside anyone. * Never wants to be held or touched. This has been since she was a baby. She never like to be held or cuddled. She wanted to be left alone in her crib or sitting in her car seat.* On her terms she will come out in the open and when she does she wants all the attention and wants to direct all activities. If she cannot direct things she then wants to go to her room or go home and be alone. She will says thing or do things to get punished or sent to her room.* Arguments with he teachers, She knows all. One particular argument almost got her kicked out of school. * She does not have normal conversations. She wants to discuss things that are well above her age level. She wants to discuss evolution or why humans exist. Will carry on very adult conversations and give advice to adults. Ready to work beside adults and continually reminds them of what needs to be done next. Or discusses how to do things better or to save time. Very oriented in doing menial tasks. Loves repetitive work.* Loves to write or invent stories that have no logic, Spelling is very bad letter are reversed and writing is very poor. Cannot read what is written at times and other times it is very neat but pencil is broken a lot because she bears down so hard. Has a not on her finger from writing. She is left handed. Can write upside down and backwards at the same time and it can be read in a mirror, when she writes like this is legible.* Constantly puts herself in danger, Plays with matched or lighters, climbs in barns and jumps out, ect. She has no fear. Does not feel pain like others do. When she was small she had to have surgery to have her tonsils removed, Dr. said she has a sore throat even though she never cried or complained. After surgery she stole a hamburger from a bag in the car and ate it. ( 30 mins) She refused to drink the milkshake. Constantly has sores and scratches on her hands and legs. Constantly has bruises on her hands and legs. * Has unusual vocal patterns. Can understand what she is saying when she talks if she is excited or upset. Very high pitched voice and talks very loud. Screams at all times and does not know how to whisper. After surgery a deformity with the formation of her pallet was found the pallet does not have the hump presence in a normal pallet. Dr. states that air whistles past and makes it hard to understand. Talks and sings through nose, all sounds very nasal.* Likes to work with small item such as legos and build intricate things. Likes to do puzzles over and over. Tears paper repetitively and has an attachment to strings. She will tie intricate webs of string on her bed.( I fear that she may not wake up and accidentally strangle herself.)The explosions of anger make me fear that she may one day try to hurt someone or hurt herself. For the most part she has not had a major explosion in school it is like it all builds up and when she gets home it is all released here. After an explosion and all out argument she then starts to talk about things that happened throughout the day at school. She sometimes seems real sad and upset that she does not have any friends and gets upset when her sisters friends call to talk to her. She says no one ever calls her and wants to talk to her. Feels like she is being rejected because she wants so bad to be accepted for who she is. She has a wonderful memory for plays and music and once she hears a song she can sing it over and over. Her voice and its tone rules her out of course and plays and she gets upset when she cannot get a part in a school play because of it. She gets angry when those who got the part does not remember their lines or songs.  Her development has been different over the years also. She walked and never crawled. She was 9 months old when she was walking on her own. She talked at a very early age also. She would carry on adult conversations at 13 months old. She was a very big baby 9.15 lbs at birth. She did not tolerate regular formulas and had to switch several times til we put her on powdered formula. She was a very healthy baby and stayed chunky for several years. At age 6 she started slimming down and has maintained a small stature. She weighed 60 lbs for close to 4 years and has just reached 80 lbs. She is 11 years old and has very faint development of the breast area. Doctor says there is no issue there.Over the years she has been tested for many illnesses. She has been tested for cancer, Leukemia, Diabetes, Malformations of the mouth( Partenal-Grandfather had clef lip and pallet)(+DX), Kidney disease, Bladder defects(+DX), ADHD(+ DX) , Whole or lesions in the spine and the list goes on. In January2009 she was given a tdap shot because of stepping on a needle. She refuses to wear shoes. She had a reaction to the shot and the Dr. though it was a one time thing. On her 11th birthday she was given her vaccinations of menactra and gardasil. She also had reactions to these shots and the allergy specialist says that without giving her the shot again we may never know what is causing this. I along with her Dr. have decided she will have no more shots unless it is life or death and she will be on allergy meds before the shots are given.She wears glasses and has since 3 years old but never puts them on and breaks then repeatedly. It seems I am in a constant cycle of Dr. visits that result in nothing but unanswered questions and more questions in the end. I am just looking for a DX so that I can get her and me the help that we need so she doesn’t have to continue to live feeling the way I know she must feel. At times she lets a little of those feelings slip and If I had to feel the way she does I do not know how I would be able to handle this. I know she sometimes feel alienated. If I could just get a straight answer . She and I would feel mush better. I could present this to the teacher and get some understanding. Teachers think she is just lazy because she makes such good grades and never brings a book home. I think she is bored and need to be challenged. I have been told that this is all due to BAD PARENTING. Is it bad parenting to try to get help repeatedly. I was told by one social worker to “BUST HER ASS” , he said it was all she needed. I have tried honestly. At 11 years old she has been through so much more than other kids it is scary.So what do I need? I need answers. I need rest. I need help. I need my little girl back. I need understanding, comprehension, and compassion. But I need all of this for my little girl not for me. I need for her to understand what is happening to her and why it has to be this way. 01/06/2010Today has been a pretty good day. She got out of bed with out too much fussing, but she wanted to wear a skirt and leggings (no socks only dress shoes) it is only 19 degrees in the AM here. So WE had the discussion of how it could possible make her sick because she has a weak immune system. It was a slight struggle to get her to the car (without her hair being brushed). I have learned to pick my battles. After school she came in but went straight to her room and did not want to come out as I have asked to do to help do some laundry. But we got through that till dinner time when she refused to eat what I had fixed and wanted to choose for herself. Not going to let her starve so I usually give in to this, As she only weighs 80 lbs and I worry about this. The big part of the days hasn’t hit yet when it is bath time and she will not want to bathe and will not want to go to bed. Sometimes I think that her older sister does not help because she wants to play constantly and doesn’t know when to stop. This gets Boo going and when she gets going it irrupts into a all out explosion. Name calling, hitting, spitting, cussing, and much more.During all of this it seems to carry on til time for her step dad to come home and when he does he is very tired from working two shifts. That is when she starts screaming and arguing with both of us. Blaming everything on everyone else. She didn’t do it, she hasn’t seen it, she didn’t break it, she hates everyone, she wants to die, she will kill someone, I HATE YOU!!! That is how the day USUALLY ends. Then I am sad and mad And frustrated. Sister is tired and sleepy and usually crying. Step dad goes to bed and doesn’t say a word, the fight has left him……….So now I sit a write this to try to understand myself and to try to document a day in OUR life so that hopefully one day I can get help before something really bad happens.We all love her and when we try to show her it is like hugging a CACTUS! She pushes and screams or just sits limp and not caring that we love her. I know that somewhere inside she wants those hugs and wants to be cuddled. I know this because once in a while she sometimes she sometimes up to me for no reason she hugs me and holds on like it will be the last hug ever and wants to be held just like a baby. So I do this until she decides that she no loner wants the affection. THEN I WONDER………. When will I get that hug again………………………