A quarterly newsletter about visual impairmentS and deafblindness for families and professionals



Download 216.77 Kb.
Page1/5
Date26.05.2018
Size216.77 Kb.
#48919
  1   2   3   4   5
SEE/HEAR
a quarterly newsletter ABOUT visual impairmentS and deafblindness for families and professionals

A collaborative effort of the Texas School for the Blind and Visually Impaired and Texas Commission for the Blind



Fall 2001 Volume 6, No. 4

Table of Contents
FAMILY

The Story of These Chocolate Chip Cookies........................................................................................2

Accepting Help.................................................................................................................................................3

Sharing Your Gifts.................4

Abraham Has a Friend...............................................................................................................................5

The Smallest of Gestures Can Declare Independence...............................................................................5

My Experiences in the TSBVI Summer Programs....................................................................................6

What Do You Do When...You Need Help But Don’t Live in Utopia?......................................................7

Thinking about Employment Issues for Our Children Who are Blind or Have Vision Impairments ..........9
PROGRAMMING

Looking at Self-Stimulation in the Pursuit of Leisure or I’m Okay, You Have a Mannerism....................10

Planning and Supporting a More Active Life at Home..........................................................................15

A Personal Journey to Literacy..................20

Whatever Works..............................................................................................................................24

New Technology for Blind and Visually Impaired Students..................................................................25


SYNDROMES/CONDITIONS

Otosclerosis: The Silent Thief...........................................................................................................26

Cytomegalovirus - Parent to Parent Support...........................................................................................28
NEWS & VIEWS

Update on Short Classes at TSBVI..............................................................................................................28

What Does This SBOE (State Board of Education) Rule Mean?.............................................................29

Lessons from Geese........................................................................................................................................30

When Need and Opportunity Meet................................................................................................................31

Legislative Update.........................................................................................................................................32

Deaf-Blind Multiple Disabilities Medicaid Waiver Update....................................................................33

Classified........................................................................................................................................................36


Kate’s Corner

What a busy, fun fall we have had here in TSBVI Outreach. Two events that were especially energizing for me were the “Power of Touch” workshop and a training by Dr. Jan van Dijk on child-guided strategies for assessing children who are deafblind. In September, six families and their children with deafblindness came to TSBVI for a different kind of workshop. The intent of the training was to teach the families about the critical role that touch plays for the child with deafblindness. This relates to both the type of touch the child receives from those around him and the way he uses touch primarily through his hands as eyes, ears, a voice and as tools. Gigi Newton from Texas Deafblind Outreach taught parents how to use massage with children and the benefits of a regular massage routine. Barbara Miles, co-author with Marianne Riggio of the book Remarkable Conversations, presented information on why developing the use of hands is so important. She also taught specific strategies for improving interactions with the child through touch. Both presenters used videotapes the families made prior to the workshop, and individual consultations with the families during the workshop, to personalize the information related to each child. Gigi and Barbara also had parents practice skills with their children immediately after they had been discussed and demonstrated.


This workshop occurred just days after the attacks on the World Trade Center and the Pentagon. Perhaps it took on special meaning for all of us who were involved, because we were all reminded of how precious life is, especially our children’s lives. These children have much to tell us and to teach us if we can learn to be receptive to them, to slow our pace and to just focus together without hurrying through the small things in this world.
Equally powerful was the presentation by Dr. van Dijk, in collaboration with members of the TSBVI staff and the parents of a young girl who is deafblind. Over a two-day period they conducted an arena assessment that a larger group of observers was able to watch from another location, through the miracle of video conferencing. Dr. van Dijk utilized an assessment process described in a new CD-rom product he developed with Catherine Nelson from the University of Utah, titled “Child-Guided Strategies for Assessing Children who are Deafblind or have Multiple Disabilities.” In the next issue of SEE/HEAR, Dr. van Dijk will write about this assessment. In the meantime, if you are interested in purchasing a copy of the CD-rom, send a $50 check or money order to: Dr. Jan van Dijk, c/o Joe Franken, 4619 Spyglass Drive, Dallas, Texas 75287. “Pay to the order of” Joe Franken. After his time in Austin, Dr. van Dijk traveled to Lubbock and presented at the Distinguished Lecturer Series sponsored by The Sowell Center of Texas Tech University. We learn so much each time we have the privilege to hear Dr. van Dijk speak and watch the way he interacts with children. We’re always grateful for the time he is willing to give us that takes him so far away from home.
Finally, I must mention a family that I have known for quite a number of years and an honor they received in the beginning of the summer. Lee Ann Bryan and her family, who live in Amarillo, were the recipients of the 2001 Self Help for Hard of Hearing People (SHHH) Family Involvement Award. All of us who are lucky enough to know the Bryans agree that this family is most deserving of this honor. We are very proud of you Jackie, Everett and Lee Ann! The Bryans will be featured in a future issue of Hearing Loss, the magazine published by SHHH.
The Story of These Chocolate Chip Cookies

By Ellen Oestreich, Parent, Humble, Texas


Editor’s note: Kate Moss was recently invited to participate in a wonderful parent support meeting in Humble, Texas, near Houston. When she arrived at the school where the event was to take place, she was given a basket of goodies. Among the goodies was a canister of cookies and this little story. She felt that the story was worth sharing with our readers; so here it is. The cookies were worth sharing as well, but she didn’t seem inclined to want to share them.
As is usually the case in our lives, we got home a little later than I planned. After the day’s activities, I was looking forward to baking cookies with my daughter. We arrived home to a HOT house. We quickly changed into our “baking attire” and began measuring, pouring and mixing. In an effort to speed up the process I threw the butter into the microwave and began to “NUKE” it until it was fully melted. (What I had forgotten was that it would have melted in mere seconds just sitting on the counter of the HOT kitchen.) We cheerfully added the dry ingredients. Flour, sugar, brown sugar, salt, etc. Little grains of ingredients were flying everywhere and creating smiles. Mixing took place next and then adding the eggs and vanilla. The final and key ingredient ...the chips...went in last.
As we stirred and munched on the few remaining chips in the bag something was happening to the dough. HMMM...it is much darker than usual! As you may have guessed by now the coveted chips were melting and giving this chocolate chip cookie dough a look all its own. Oh well ...cookies are cookies to this family, so we baked and watched and baked some more. After licking the bowl we enjoyed a glass of milk with our fresh baked treat. While they looked different and were not quite what was expected, they none the less hit the spot and provided smiles for this mom and her daughter.
I decided this cookie experience was God’s way of reminding me that the unexpected can bring life and laughter to any day. It is all in the perspective! While I was planning for a typically developing chocolate chip cookie, something special happened to the mix. The look and texture was different, but the enjoyment of a warm cookie and a glass of milk shared with a precious child was the same. No chocolate chunks to bite into, but the wonderful chocolate flavor spread throughout the whole cookie. Our “chocolate melt” cookies were yummy!
Now realizing I had committed to baking cookies for visitors, I whipped up another batch after Caitlyn was asleep. The new batch was filled with “typically developing” chocolate chip cookies. They looked like the cookies I have always baked. They smelled like the cookies I have always baked, and, yes, they tasted like the cookies I have always baked. What was missing with these cookies? I had no partner in crime. I missed the smile and peace I felt when I watched Caitlyn grinning and eating and even drooling a chocolate drool. It did not matter to her how the cookies looked, only that they were cookies and she could enjoy them before bed.
I suppose this is a lot like life. It is easy to get caught up in standard expectations and forget that sometimes the best things come from the unexpected. There will be some people in this life who cannot deal with the unexpected. There will be some people who deal with it but will be uncomfortable. There will be some people who accept it and look at it as a golden opportunity. Each and every one of us has the right to be who we are and deal with things the best we can. I hope that I can learn from my child how to appreciate the unexpected. If I can spend more of my time looking for the unexpected, no two days will be the same, and life will never be dull or boring.
On that note, there are both varieties of cookies to enjoy. Remember: they are both cookies; they were both made with the same ingredients and love; and they both taste great with a glass of milk and a favorite partner in crime! Our hope for you is that you will be the best you can be today and that your life is rich and full of ordinary and extraordinary.
Peace, Ellen and Caitlyn

Accepting Help

By Gina Meadors Ortiz, Parent, Bryan, Texas


After twelve years of marriage, our little angel, Gabriela, was born. Soon our joy turned to disbelief and a sea of unanswered questions. While most parents were beaming with pride at each new milestone, we were dealing with diagnoses such as “severe developmental delay,” “legally blind,” “mentally retarded,” and “seizure disorder.”
The first years of a child’s life should be full of beautiful memories. For our family, all we remember are the seizures, the doctors, and the unanswered questions. Instead of playgroups, we had sessions with physical therapists, occupational therapists, vision therapists and speech therapists.
In the beginning, I cried a lot. Then realizing I had to “be strong for Gabriela,” I quit crying and threw myself into the job at hand. The first two years went by very fast. I thought I was in control of my emotions. After all, I no longer cried every time my little darling had a seizure.
One day Bettye, our caseworker for the Texas Commission for the Blind, stopped by for a home visit. I must have looked a mess! I know my house was dirty. I couldn’t remember the last time I had vacuumed. Though I forced myself to cook for Gabriela, everyone else fixed sandwiches if they wanted to eat. I guess you could say I was depressed. Bettye recognized I was in trouble. Not giving me time to decline, an appointment with a counselor was set for the next day.
I had been raised to “fix your own problems.” Talking about your problems was a waste of time and did nothing to solve it. If something is wrong, do something about it. But this did not include talking to a stranger! My counselor, Lois, was wonderful. I opened up to her. I told her secrets I had told no one.
Though my feeling of depression was based on my daughter’s disabilities, I did not realize how my past years still affected me. Through the hours of tears and soul searching, I learned much about myself. I learned to accept my daughter as she is. I also learned to take time out for myself. At least every once in a while!
Opening up to a stranger is difficult. You know what you say is confidential, but it’s a feeling of vulnerability to open your life for examination. Keep a box of Kleenex nearby; you’ll need them!
With the help of counseling, I have grown in so many ways. No longer am I intimidated by staring strangers. No longer do I stand by while young college kids use Grandma’s handicapped sticker park in one of the few handicapped parking spaces. (I guess their disability is wearing three-inch heels!)
A counselor cannot “fix it” for you. They listen. Believe it or not, the answer lies within yourself! We just need help in getting to the answers.
I love my daughter with all my heart. If you only looked at the diagnoses, you would miss the beautiful blue-green eyes that are full of expression. You would miss the cuddly little girl whom everyone falls in love with. You would miss the little girl who loves to be held and hates to be left by herself. If you look beyond the diagnoses, you will see a little girl, four years old, who enjoys going to school, riding horses and the feeling of wind in her face. You will see a little girl who is the apple of her daddy’s eye!
Sharing Your Gifts

By Paige Parrish, Parent, Tyler, Texas




My daughter Alexandria is losing her vision due to a rare congenital retinal disease. She is a socially aware nine-year-old who is inquisitive beyond her years. She possesses the ability to push past the societal boundaries frequently imposed on the blind.
Her passion for Africa began through several friends who, due to business or medical missions, lived in Africa. While visiting their homes, she tactually explored a genuine tribal mask and zebra skins. She also was intrigued by a life-size bronze African dancer who was in the exact ballet position, “posse,” that she was trying to master in her ballet class.
Alexandria’s love for Africa was cultivated during a visit to our local zoo. This was no ordinary day at the zoo, for I had contacted the zoo owner, Hayes Caldwell, to inquire about a “hands-on” experience. He graciously accepted my unusual request. This experience would shape and forever change Alexandria. As she scaled a giraffe’s neck she had a moment of absolute clarity - a concept that would be forever ingrained in her visual memory. (See “Out of the Mouths of Babes” SEE/HEAR, Summer 2001.)
Upon returning home from our adventure, Alexandria wanted to find out everything she could about Africa and its inhabitants via the Internet. With my assistance, our first inquiry about blind Africans led us to an emotional photo essay. The first photo to appear on the screen was that of a blind villager who had been robbed of his ocular function by having a parasitic worm in his system. He was using what appeared to be a gnarled branch for a mobility cane. Alexandria was brought to tears as she pressed her nose to the magnified image of someone not so different from herself. She did not understand why he did not have the proper equipment to navigate around in his environment as she did.
The next photo to emerge was of yet another man who was blind, and he was wandering aimlessly around his village with his shirt on wrong-side-out and backwards. No one would assist him in getting where he needed to go.
Further reading brought out disturbing findings - this culture views blindness as a curse. It is believed that people of Africa are stricken blind for their wicked deeds; therefore, they are discarded by society. The children of blind parents lose their childhood and any opportunity for an education because they become sighted guides for their blind parent.
Alexandria quickly began to devise a plan to relinquish her outgrown mobility canes and get them into more needy hands. As a mother, you can imagine that I am bursting at the seams with pride. The next step was to follow a link to Helen Keller International

Download 216.77 Kb.

Share with your friends:
  1   2   3   4   5




The database is protected by copyright ©sckool.org 2022
send message

    Main page