Author Topic: Personal experiences  (Read 189562 times)

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Personal experiences
« on: December 16, 2004, 11:06:32 AM »
Here is a great place to express information about your experiences, your stories, your disability, your abilities, your advice or other creative writing.  Entries will be reviewed and some may be asked if they would like to be added to our http://www.new-horizons.org/expwri.html NHU "Experiences"page each month.   :)
« Last Edit: November 25, 2008, 08:40:44 AM by NHU Community Friend »
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Re:Personal experiences
« Reply #1 on: March 14, 2006, 07:41:38 AM »
In 1984, when my daughter was born, I considered myself a fairly competent individual. True, I was young, but not completely ignorant. Yes, I expected certain behaviors, but not the impossible. I've since realized that there was much then that I didn't know about kids -- or about my daughter.   As a first time mother, I wanted to believe the “experts”.
When my daughter was a baby, she cried all of the time -- not the scrunch-up-the-knees colic cry -- but a full breath-stopping wail that could last up to an hour and a half! This crying was inconsolable and seemed to be triggered by various events. She would be as happy as can be, for instance, during a trip to the park; upon arrival home, however, she screamed as if she were the most miserable little baby alive. I can remember times when I couldn't hold her close enough, couldn't calm her spirit, couldn't sit and listen to her any longer, crying myself and asking why I have this little girl if she was going to be so unhappy.   Often I would question her doctor as to why she wasn’t responding to me.  I was told repeatedly that she was ignoring me, there was nothing wrong with her.
By her second year I knew my daughter was not like other kids -- she seemed to have special needs -- needs I wasn't sure how to meet. For instance, I realized that my daughter couldn't follow directions -- not wouldn't -- couldn't. I learned to take her by the shoulders, look into her eyes, and say, "Focus." I had finally found a doctor (in a completely other state) who confirmed that she was deaf and I was amazed and relieved that she wasn’t really ignoring me the past two years.  I asked her doctor to do the same -- it helped her to speech read, until she learned to sign, and "focus" on what we were saying -- something we now know her brain does not allow her to do easily.
As the early school years came to an end, my daughter experienced several drastic behavioral changes -- she was "in trouble" a lot. She lashed out aggressively toward other kids, she would get a vacant look in her eyes during times her behavior was most out of control, and at times, she would become so enraged with something "gone wrong" that I would literally have to sit on the floor with her, my arms and legs "wrapped" tightly around her to get her to calm down, to stop hurting herself or someone else. Kindergarten loomed ahead, and I prayed that the newness of a different school and way of learning would grab my daughter's mind and reduce the frequency of the preschool behaviors that were possibly caused by mental boredom. The change in behaviors didn’t happen until she was in the fourth grade, and we moved to an area that had a Deaf Specialist who actually knew what she was doing.
We were blessed with a wonderful teacher during her fourth grade who had a gift for loving difficult children -- children like my daughter! She willingly answered her questions, she willingly met with me as I faced her challenging behavior in class, and she patiently and prayerfully worked with her as she went through various diagnoses processes. Each diagnosis entailed several visits to a specialist recommended by the school's guidance counselor or my daughter’s individual counselor. I and my daughter's teacher completed evaluation forms about what we had observed, and the doctor prescribed a variety of medications to raise the seratonin levels and help her control her behavior. This was not a quick and easy process. We all experienced "the weeks from hell" when the dosage wasn't quite right. After 3 stressful years of misdiagnoses and mismedication-management, I went to outside resources for help.  During that time, I also learned that any foods or drinks with sugar or corn increase her out-of-control behaviors, while a bit of coffee helps calm our daughter. Milk products made her lethargic.  I have had to research and reassess many environmental factors related to many different diagnoses. In addition, as my daughter has grown, the medications have had to be adjusted -- there is no "one-time" "this-is-all-you-need" fix for anything.
Trista's school years, since kindergarten, had been traumatic due to her own behaviors and the misunderstandings that come when a teacher or administrator does not understand special needs.  Her first through third grade teachers never even tried to understand -- for you who are parents, do not give up advocating for your child even if a teacher is "older and supposedly, wiser" -- for you who are teachers, do not ignore any information offered to you to help you understand your students (and their parents) better. By the spring of her third grade year, I knew we had to find a different school for Trista. The principal of her school did not have the background knowledge or concern to deal with Trista.
The first three years of elementary school took their toll on Trista and our family, by then Trista had two sisters. We found ourselves emotionally drained and decided to move closer to family for support.   Each new school year brought anxiety and fear of what the year ahead would hold for Trista and us. She dropped out of high school her senior year because it was just too much for her.  She did; however, complete her GED and is thinking of going to college – another struggle we will face and overcome.  She ultimately received a diagnosis of Asperger’s Syndrome and the pieces finally fit and we could understand all of who she was!
I've come to realize that the learning is not over for me as a parent or as a teacher. I know now that a blissful home-life is probably an illusion. I accept this, and understanding why my daughter behaves as she does, I try to help her develop the strengths she does have. And perhaps, just as important, I have an understanding of why other people behave as they do. Since my daughter started school, I've had to step back and look at some of my practices and realize that I've hurt people in the past because I did expect the impossible of them. I decided that I wanted to share my experiences with other people -- people who, like me, may be skeptical of the various disorders and the requests of parents -- so I contribute to this blog and to my own site (http://pegasys.bravehost.com/index.htm)  so that fewer kids are misunderstood.
You see, in 1984, I didn't understand many disabilities. I thought some were an excuse parents used when they weren't willing to hold their child accountable. I assumed the kid was lazy. I responded to the person's behaviors accordingly, with harsh judgment and actions. Oh, I look back now and ache for those kids -- kids whom I didn't understand. Was I unfair? Possibly. Was I willfully unfair? No. Was I ignorant? Yes.


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Veteran Shares Personal Experience -
« Reply #2 on: December 01, 2010, 09:37:37 AM »
From Karl, USA, --- "I have diabetes, hypoglycemia, Generalized Anxiety, and Tinitus in both ears, constant ringing or high pitched sound. I am a veteran of the Veitnam War Era. I do watercolour art and, I am still an amateur artist in the field of watercolour. Ok yes, I fogot, I am a housebound patient as well. I study art books and have a large collection of art materials that I use with my paintings. I mostly deal with fine arts since, I do not really understand abstract art. I am also very good in photographic art as well."
August 8, 2010
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See this article written by a mother, grandmother, Carol Hill who has experienced raising her own children and grandchildren who are deaf. She is advocating to not only make literature and printed materials, videos more available to children who are deaf, but that children also require a way to see and feel the sounds of language in order to develop language and reading skills. To compensate for this inequality she developed a system of visual symbols and hand signs for the deaf called Visual Phonics. The program is further developed at the University of Ohio, Literacy and Learning Center. Carol continues to work on producing books for deaf children, with ASL sign language videos included. We look forward to sharing information on these books in the future.  
Copyright, 2010, Carol Hill, All Rights Reserved

« Last Edit: December 01, 2010, 11:34:20 AM by NHU Community Friend »
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Re: Personal experiences
« Reply #4 on: November 22, 2011, 07:35:45 AM »
from Wisconsin,

This has been a positive experience for me, dealing with New Horizons Unlimited. Having my own computer has opened so many doors for me. I would recommend this organization who is need of help.
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Re: Living with Superior Semicircular Canal Dehiscence Syndrome
« Reply #5 on: September 14, 2015, 09:03:04 AM »
Philippa's Story:  Living with Superior Semicircular Canal Dehiscence Syndrome from Eurodis.org- Rare Diseases Europe "Philippa has a superior semicircular canal dehiscence syndrome (SCDS), a rare balance disorder.  SCDS is a developmental anomaly that occurs during the first three years of life and is thought to be caused by a lack of bone growth in the uppermost balance canal of the inner ear, which can cause a tiny hole to develop.    Read more....
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