As we discussed here are some websites for your consideration to possibly add to your website. These websites represent some of the disorders that Bailey has been diagnosed with and I think may be of some interest to your website visitors and members. For information and introduction purposes, I've included a brief description of the situations we have encountered with Bailey and each disorder. I really want people to be aware of how Bailey has been affected and what we are aware of for her future.
I am concerned about Bailey's diagnosis of Asperger's Syndrome. Bailey was diagnosed a little over 10 years ago by
a doctor I feel was/is competent to make these types of diagnoses,
however, in my continued and recent research, I have found that there
is a bit of a conflict to diagnosis a person with AS and mental retardation. Bailey's IQ testing results indicate that she is
mildly/moderately mentally retarted. Many health care professionals state there are still many unknown aspects of AS and may in fact
include people who are mentally retarted, but this has not been what
they have said in the past. From her different testing it has been
determined that she primarily has rote knowledge vs. know memory. She
reads very close to grade level which is 9th grade, but
her comprehension is about 3rd grade level. Her ability to memorize is
really remarkable. She can recite numerous books, movies and other
bits of information that she is interested in. She will probably always
need to live with someone who will help her. She has limited strength
in her hands and fingers. She can't zip, button, snap, lace,or tie. It
has worked out OK because she is so skinny and the "in" jeans are the
low-rise/hip hugger type, so we can leave them zipped and buttoned and
she can pull them up and down by herself. All of her tennis shoes have
velcroe closures and etc.
Bailey was diagnosed with mild scoliosis when she was an infant. She has a biological half sister on her biological father's side of the family, who has scoliosis. So her pediatrician, in California diagnosed the condition and her doctors here in Arkansas have been monitoring her since we moved her over 13 years ago.
Her diagnosis of Scheuermann's Disease was determined late in 2005. In April 2006, Bailey was casted and fitted with a removable backbrace. From April 2006 to February 2009, Bailey wore her backbrace as close to 24/7 as possible and she did very well wearing it. In February 2009, her spine specialist changed her wearing time to 24/3, so she now wears her backbrace only 3 full days each week. Her doctor is very pleased with her progress to date. Her curvature has improved about 20%. Her spine specialist prescribed the backbrace primarily for Scheuermann's Disease stating that it would not negatively influence her scoliosis, and might even help. If the retraining of her spin during the largest growth time of puberty, does not work, she may have to have back surgery one day to implant a rod in her spine as the curvature will interfere with her breathing.
Trichotillomania was diagnosed in about October 2007. Bailey was 12 years old and had just begun 7th grade. She had a new teacher, a man, plus they totally redesigned their educational curriculum for this school district's special education program. She had just begun her menses. She had recently begun other physical developments and body changes. There were some very new changes in her life, which were positive changes, but she has extreme difficulty adjusting to changes of any kind. She had several bald patches and areas of broken hair. When I noticed it I was concerned that someone had pulled or cut her hair. It took her about 2 weeks to finally tell me what was going on, but by that time, I was noticing her behavior changes and knew she was doing it herself. It was difficult to determine if she was aware of what she was doing during the times she did it but the results indicated she relieved some stress afterwards. We went to her doctor and through working closely with her school counselor, teachers and aides and a psychiactrist, we were able to implement some other de-stressing activities for her. These have been positive, however, she does continue to pull her hair out when faced with stress. I try to keep our home as stress-free and comfortable for her as possible. I try to keep our home a haven for her. She has to focus and interact daily with things that really bother her, so home is "safe" for her.
She constantly asks the same questions over and over again. I must constantly reassure her that all is well. She will constantly tell me that she loves me and I constantly tell her that I love her. She must have constant reassurance.
Bailey has an extremely high tolerance of pain every where except her head and hair. When she was little we noticed it and it was later diagnosed by her doctors. If she says something hurts on her body, we really need to check it out with her doctor, because something is really wrong. Each time we've done this, there has been an injury or medical condition diagnosed. For example: On her 4th birthday, I had a hard time waking her up and keeping her awake, when I did she complained that her back hurt. I could not find any observable injury or bruising, she was not running a temperature, coughing, nor did she have any other visible conditions. I took her to the emergency room and after about 8 hours of testing, the doctors diagnosed pneumonia! They began IV medications and she began responding positively to them.
To date, we are aware of 4 different broken bones. She has broken her little toes on each foot twice! She has a habit of running with her head down and not watching where she is running. She is very clumsy and awkward by nature. She ended up "clipping" her piggy toe on the door frames 3 times and one time she "clipped" her piggy toe on the chair in my bedroom. Each time it was hours later that we knew she had injured herself.
When she was about 5 or 6 years old, she burned her arm on the curling iron in the bathroom. Jasmin (my oldest daughter) was fixing her hair and went out of the room for a minute and somehow Bailey put her arm on it and burned herself. We did not even know about this for several hours, at whichtime I took her to the emergency room, with 2nd degree burns. We had to go to the emergency room each day for about 2 weeks for them to "debris" the injury. She did not cry nor did she have any type of pain killer!
She has a very difficult time with her head and hair. We have tears and some hollering every time I wash, brush, blow dry or fix her hair. I have to take my time and very gently work with her hair, constantly encouraging and praising her on how well she is doing. The sensations she feel on her head continue long after we are done doing whatever with her hair. The sensations are greatly magnified and are very distracting for her.
Bailey is soothed and comforted by light touching on her back. She asks for me to "tickle" her back which is how she refers to me lightly running my fingers over her entire back and neck. She does not respond by laughing but by expressing how much she likes the feeling. She self stimulates by lightly rubbing things over her face, mouth, hands, arms, feet and legs. She spins to de-stress. Spinning is a big comfort for her. She will sit in a chair and spin, stand and spin, anything to spin! You and I would not be able to stand if we were to spin like she does, but spinning does not affect her equilibriam at all! She can walk normally!
Her main focus now is paper. She loves a particular white copy paper with blue on the packaging from Wal-Mart. She loves to cut papers! (I put some pictures of her papers in my facebook page). Her preoccupation with paper is all consuming and I have to monitor it closely. She uses only 1 pair of scissors to cut her papers and she takes a small "cutting" box (large shoebox), her scissors and papers with her as often as I will allow her. She always takes at least 1 and up to 3 papers with her whenever we go anywhere. I no longer let her take any of her papers into the store or where ever we are. She will always ask and depending upon what we are doing, I may allow 1 paper. Her papers primarily represent people and animals. She names each one and is very protective of it.
This is just a small amount of information about her. I am going to set up a facebook page for her because there is so much more information about her. She is really facinating and unique! I am so BLESSED for God to have given me the priviledge of being her mommie and guide in this life. Everyone who meets her just loves her instantly. Since we got her initial diagnosis when she was really young, we were able to work closely with her in various therapys: play therapy, face expression recognition. She can not read facial expressions, body language and did not understand personal boundaries. We used to brush her body with a very very light brush and then do joint compressions - this was to aid her sensory perceptions.
Anyway, these are some of the websites that I think might be of some assistance to others. I appreciate you addressing these conditions with interest. I try to be as open as possible about her with everyone. I'll answer any questions to the best of my ability and if I don't know an answer to something, I'll research it. I find that we are constantly learning more about her. As she grows up and matures we are encountering many new symptoms of various conditions and end up with new diagnoses.