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Fall 2008 Table of Contents
Versión Español de este artículo (Spanish Version)

 Excerpt from KNFB Reader Website

Abstract:  this article describes new cell phone that incorporates screen reading technology into a multifunction cell phone.

Key Words:  blindness, visual impairment, National Federation for the Blind (NFB), cell phone, screen reader, character recognition technology

 

knfb Reading Technology, Inc. is pleased to announce the latest breakthrough in print accessibility. We have developed software which places the functionality of a reading machine into a multifunction cell phone. The Mobile Reader products can be activated and ready to use with the touch of a single button on the phone. The user takes a photo of the print to be read and the character recognition software in conjunction with high quality text-to-speech will read the contents of the document aloud. At the same time, it can display the print on the phone’s built-in screen and highlight each word as it is spoken.

The Mobile Reader Product Line:

  • Reads most printed documents, from letters and memos to pages in a book
  • Reads address labels and package information and instructions
  • Easily recognizes U.S. currency
  • Displays each sentence visually and highlights each word as it is read
  • Stores thousands of pages using easily obtainable flash memory
  • Transfers text files to and from computers or Braille note takers
  • Adjusts reading speed to suit user’s preference.

In addition, with the use of a screen reader, the user can access the other functions of the phone device including making and receiving phone calls, personal information management such as contacts, calendar, etc. Also contains ability to run accessible GPS programs, access to Adobe PDF files, voice recorder, music player and much more.

For more information about the K-NFB Mobile Reader and its specification, go to: <www.knfbreader.com/products-mobile.php>

Fall 2008 Table of Contents
Versión Español de este artículo (Spanish Version)

Reprinted with permission from Texas Parent to Parent Newsletter (7)1, Spring 2008

Abstract:  this article describes two programs, one that provides refurbished equipment to persons who demonstrate financial need and another that provides an “auction” site to match donors and sellers of assistive technology devices and services.

Key Words:  blindness, assistive equipment, assistive technology, device reutilization, Project Mend, AT-Match

 

Project Mend

The first part of the new device reutilization program is a collaboration with Project Mend, Inc., an organization with a medical equipment reutilization program operating in San Antonio, Texas.  Project Mend, Inc. provides refurbished equipment through long-term loans to persons with disabilities who can demonstrate financial need.  The loan period is set for a period as long as the individual continues to need the equipment.

Items normally available include regular and quad canes, Hoyer lifts, regular and rolling walkers, shower chairs, trapeze bars, forearm crutches, scooters, transfer boards, bedside commodes, electric hospital beds, elevated toilet seats and manual and electric wheelchairs. All items are evaluated, sanitized, refurbished and repaired before being loaned and reutilized.

To contact Project Mend: 888-903-6363; 210-223-6363; Toll Free FAX 866-514-0876; FAX 866-514-0876; 1201 Austin Street,  San Antonio, Texas 78208;    Website:         <http://www.projectmend.org>.

 

AT-Match Auction Site

The second part of the new device reutilization program will be an Internet “auction” site for reutilization of assistive technology devices.  The Internet site, called ATMATCH.com, is an “auction” site that serves as a comprehensive Internet access point for obtaining assistive technology devices and services - a marketplace where donors and sellers can locate buyers for a wide range of assistive technology and durable medical products.  The site provides users with links to regional and national resources in a variety of related fields.  Users will find specific assistive technology devices at reasonable prices, post equipment for sale and locate assistive technology resources in Texas and beyond.  Assistive technology providers may advertise equipment at the “AT Store” link on the ATMATCH site.  All of these activities will be possible from one Webpage.

AT-Match Web Site

 

Fall 2008 Table of Contents
Versión Español de este artículo (Spanish Version)

By Cyral Miller, Director, Texas School for the Blind and Visually Impaired Outreach

Abstract:   A new document outlines current legal and state standards and national guidelines for quality VI educational programs.

 

Key words: Guidelines, Standards, VI programming, administrators, parents

 

The Texas Education of Blind and Visually Impaired Students’ Advisory Committee, established in 2005, has developed a brand new resource, Educating Students with Visual Impairments in Texas: Guidelines and Standards (PDF), to help administrators and others understand both legal requirements and quality standards to meet the unique needs of students with visual impairments.  There are comparatively few students with visual impairments in Texas. Although in the 2007-2008 school year, there were more than 4.67 million students enrolled in Texas schools (retrieved on October 6, 2008 from ), only 8,040 of them were registered as having visual impairments.  These children are scattered across the state and range in age from infancy through age 22.  In January 2008, half of the school districts enrolling students with visual impairments had fewer than four VI students in their entire district and nearly a quarter (24%) of these districts had only 1 student. (Data on VI student enrollment is from the 2008 Annual VI Registration, compiled by the Texas School for the Blind and Visually Impaired for the Texas Education Agency.)  Administrators need information on how to help their students with visual impairment have access to the general curriculum as well as learn VI specific skills to become independent, productive citizens to the greatest degree possible.

This new resource provides a reference on components of a quality program, based upon current laws, rules and regulations in the state of Texas, divided into sections with explanatory text and citations for each component.  The document is available free to download from the TSBVI website at , and is linked from the Texas Education Agency special education website as well. A primary goal is to “provide decision-makers with a set of guidelines and standards by which they can determine the quality of their programs serving students with visual impairments” (page 7, Purpose of this Document). In addition, this resource was designed to give parents and caregivers tools to help them advocate for appropriate services. The 12 Guidelines/Standards are listed below.

The Advisory Committee that created this resource includes VI professionals from local districts, local and regional special ed administrators, TEA IDEA coordination staff, consumers, parent organizations, TSBVI, DARS–Division of Blind Services representatives, university personnel, ESC VI consultants, DARS–Early Childhood Intervention staff and related groups such as the American Foundation of the Blind (AFB) and the Alliance of and for Visually Impaired Texans (AVIT).   The committee will maintain this reference and update it on an annual basis.  Please feel free to share a copy with others, and let us know if there is information that you feel needs to be added for the next edition.  You can contact <> with your suggestions.

 

List of Guideline/Standards:

 

  1. Eligibility is determined by an individualized family service plan (IFSP) or an admission, review and dismissal (ARD) committee, based upon a medical report, functional vision evaluation and learning media assessment.
  2. Vision professionals provide expertise specific to visual impairments prior to and during the full and individual evaluation.
  3. Evaluations of all areas of the expanded core curriculum are used to determine individual student programs.
  4. Appropriate instructional time, accommodations and modifications are provided to meet all identified areas in individual student programs.
  5. Certified teachers of students with visual impairments perform required evaluations and instruction.
  6. Certified orientation and mobility specialists perform required evaluations and instruction.
  7. Written job descriptions identify comprehensive roles of paraprofessionals supporting instruction of students with visual impairments, including deafblindness.
  8. Families are active members of the instructional team.
  9. Vision professionals are members of the instructional team for all birth - two year old children with visual impairments and available for services 48 weeks a year.
  10. An array of services and placement options are available based on individual student needs.
  11. Times for specialized instruction by certified teachers of students with visual impairments and by certified orientation and mobility specialists are determined by appropriate evaluation in all areas of the core and expanded core curriculum for each student.
  12. Written caseload guidelines are used to evaluate caseloads of vision professionals.

Fall 2008 Table of Contents
Versión Español de este artículo (Spanish Version)

Excerpt from the Military Homefront Parent Toolkit Web Page

Abstract:  a description of resource information for families with special needs children.

Key Words:  blindness, special needs, resources, military, special education, Parent Toolkit

 

The DoD Special Needs Parent Toolkit has comprehensive information and tools that are geared towards helping military families and others with special needs children navigate the maze of medical and special education services, community support and benefits and entitlements.  The Toolkit is broken down into six colorful modules that can be easily downloaded and printed.   IT includes important facts, records, tools and sample letters.

Whether you need to learn about early intervention services or want to learn how to be a more effective advocate for your child, you will find the information you are searching for here!

http://www.militaryhomefront.dod.mil/portal/page/mhf/MHF/MHF_DETAIL_1?section_id=20.40.500.570.0.0.0.0.0&content_id=218947

 

Fall 2008 Table of Contents
Versión Español de este artículo (Spanish Version)

By William “Bill” Daugherty, Superintendent, Texas School for the Blind and Visually Impaired

Abstract:  Superintendent Daugherty describes his first year back in Texas.

Key Words:  Texas School for the Blind and Visually Impaired, TSBVI, Superintendent Bill Daugherty, blindness, visual impairment, News & Views, Texas Focus

 

I have been back in Texas and TSBVI for over a year now after a 14 year stint in the Midwest, and much like Dorothy—or Ashley for fans of our school’s hit production of Oz—I know I’m not in Kansas anymore. It seems I’ve experienced more in the past months than I did in all my time up I-35 North. Much of this has to do with my adjustment to a new organization that is undergoing a lot of changes, but also to the extremely dynamic and diverse nature of our state’s many early intervention, K-12, higher education, and adult services shareholders in Blindness and Visual Impairment.  Simply put, Texas has got it going on like no place else in the country, and I have to run hard to keep up.

Attendance at this past summer’s Texas Focus conference of over 300 parents and professionals would be more than Oklahoma, Kansas, Nebraska, Iowa, South Dakota and North Dakota combined. That’s the pasture from the Red River all the way to Manitoba. But it was the quality of the presentations as much as the size that was impressive.  There were great opportunities to hear from out-of-state guests like Tanni Anthony and Barbara Miles—the two I was able to catch—and our homegrown leaders with so much knowledge to share that showcased how lucky we are and how hard we have worked to get our state to this state of excellence and promise.  Walk out in the hotel lobby and advocates like Marty Murrell were organizing legislative efforts that benefit us all.  Yes, the place was hopping.

As a returnee to Texas it is clearly visible that there is a solid and growing network of families, educators, consumers and service providers who are meeting together with the goal of ensuring that visual impairments and blindness, and disability in general, not be barriers to the good life.  I point out this observation as a one-time Texas itinerant TVI/COMS working in relative isolation in the late 70’s and 80’s, and as a person who has had the chance to visit many other states, as a reminder and encouragement to the many of you who have been or will be instrumental in the uncommon success our field enjoys here at home.  Progress over the past 30 years has been remarkable, and a child with a visual impairment born today, or a professional just now entering the field, will have many opportunities that developed from the daydreams and discussions and efforts of past decades.

An educational and medical mission to Nigeria in March—my first real trip out of the USA—was a jolting reminder of how good we have it here and how important it is to protect and grow what has been built.  With all that we have, there are still individuals with visual impairments and blindness who will be needlessly burdened by institutional and societal barriers, and many educators and service providers who will not enjoy the professional development and sense of community that comes through opportunities like the TAER and Texas Focus gatherings.

One of the primary keys to our common success is coming on strong and with increased clarity:  families. No one and no group can advocate for the achievement of our common goals quite like parents can.  Have the TSBVI Superintendent go before the legislature to push for this or that to improve our statewide situation, and there will be polite interest; have a parent tell their story and suddenly there is the type of empathy and connection that leads to results. I encourage all of us promote the power of parent partnerships as the Way to raise all boats.

To end on a personal note, it is so great to be home.  The food, the music, the Hill Country, and just the style of the place is scratching an unconscious itch I’ve had for the past 14 years.  People have been so kind and welcoming, including the legions of folks who have made it their personal mission to get me some company in the form of a dog.  TSBVI is rebuilding its campus, developing many fine new initiatives, and improving on what is in place.  Our state system as a whole is in its best shape ever, and I couldn’t be more pleased to be working with all of you to move the agenda forward.

 

Fall 2008 Table of Contents
Versión Español de este artículo (Spanish Version)

by Barbara J. Madrigal, Assistant Commissioner, Division for Blind Services

Abstract:  this article discusses programmatic continuity between services for young consumers and successful employment outcomes for adult consumers

Key Words:  blind, visually impaired, employment, Blind Children’s Program, Transition Program, Vocational Rehabilitation (VR) Program, Division for Blind Services (DBS)

 

A successful outcome for an adult consumer in the Division for Blind Services Vocational Rehabilitation (VR) Program is generally defined in terms of matching each consumer’s individual skills and abilities with an employer’s need for those same skills and abilities.  A successful match between a business need and a consumer who can meet that need results in a well-placed employee who can look forward to a long-term, satisfying career.

But how does that interaction happen and what does the process mean for young consumers in the Blind Children’s Program or young adults in the Transition Program?

All of these issues are being addressed as part of our current Employment ReFocus efforts.  As we move forward with the development of an improved service delivery system that better meets the needs of our dual customers—the VR consumer and the business that is looking for a competent, qualified employee—we are also placing a renewed emphasis on creating a strong foundation for even our youngest consumers that will facilitate and strengthen the acquisition of workplace skills as they grow into adults.

The specialists in our Blind Children’s Program and the counselors in our Transition Program are integral partners in our Employment ReFocus efforts.  They continually look for ways to incorporate the development of skills that are directly related to the qualities an employer looks for in a good employee into the scope of services for our children and youth.

Skills development begins at a very early age by working with parents to ensure they have the same high expectations for their child who is blind or visually impaired that they have for the child’s sighted siblings.  Parents who have high expectations for their child encourage the development of new skills and, as the child acquires new skills, his or her achievements generate increased self-confidence.

To reinforce parental expectations, we structure our services to encourage our children and youth to be curious about their world and to take advantage of opportunities to grow and learn.  We also stress independent living skills so our consumers acquire the confidence they need to explore new opportunities, identify and develop their personal interests, and benefit fully from their academic endeavors.

Group skills training in the form of workshops for children and interactive seminars for youth is an excellent example.  Group activities allow young consumers the opportunity to practice existing skills while challenging them to explore new skills.  And, as every parent of an inquisitive child or young teenager knows, the camaraderie of a group of their peers frequently acts as an extra incentive to try something new or different.

As the child matures, increased emphasis is placed on employment-related interests and options.  Each year, Transition counselors offer as many teenagers as possible an opportunity to explore the workplace through local summer programs such as “World of Work.” These programs let youngsters explore vocational options by working at a paid position, gaining hands-on experience as a volunteer, or “shadowing” an established employee who serves as a mentor and role model while demonstrating the day-to-day job tasks associated with their chosen career.

Our goal is a seamless delivery system that ensures age-appropriate development of independent living and vocational skills, so that each child we serve is fully prepared to enter the work force as a competent adult with marketable skills and abilities.

If you would like additional information about the Division for Blind Services programs available to Texas children and youth who are blind or visually impaired, please contact the DBS office that serves your local area.

 

Fall 2008 Table of Contents
Versión Español de este artículo (Spanish Version)

By Steve Schoen, Executive Director,

Deaf-Blind Multihandicapped Association of Texas (DBMAT), Austin, TX

Abstract: The author shares tips for working with different systems to advocate for change.

Keywords: Family Wisdom, blind, visually impaired, deafblind, self determination, advocacy

 

I was having consumer difficulties today (having to deal with a New York parking ticket and a rental car) and it made me think of parents dealing with “the system.” Quite a few parallels (having nothing to do with parallel parking) occurred to me. So here are Steve’s rules for self advocacy (which I learned from some of you when I was the bureaucrat.)

1) Get the facts.

In my traffic case I needed to call the Village of Mineola and figure out why my ticket price had grown to a scary amount. In the case of a parent, it pays to look at the system you are dealing with (school, private provider of services, state program), and educate yourself about how the system works.

2) Review the legitimacy of your claim.

In the case of my rapidly growing traffic ticket, I asked my wife Marian what she thought, and she said, “Just pay it…,” which I ignored. In the case of a parent, it pays to look at what it is you are wanting, and be sure that the request is reasonable. It helps to ask a friend (who is knowledgeable about disability and special needs) to review the facts with you. Many times, parents know their children better than the professionals. They also may know about more effective training or treatment possibilities through their experience as parents and attending training from others.

3) Don’t accept the first “no.”

In talking to the rental car person, I found her saying the same thing over and over despite my incredibly erudite explanation of where her company was at fault. When you are talking to a professional about your claim, you may hear this type of repetitive response amounting to “No,” or “The system doesn’t work that way,” or “We know what your child needs,” or “No one has ever asked for this before.” (I could go on--- but I bet most parents can create a far better list than I could.)

4) Take it to the next level.

There is almost always a next level. After hearing the rental car person tell me the same company policy 3 times, I said, “I understand what you are saying, and I understand that at your level in the organization, this is all you are authorized to say… I want to talk to a supervisor.” Each time she repeated her “company policy” statement, I repeated my “supervisor” statement. After only 3 more replays of this scenario, I actually got transferred. When parents are dealing with systems, this rule is very important. The person at the first level is not the final word. And frequently, there is more than one level where you can take your request.

5) Stay calm.

My family will attest that when my volume and pitch of speech go up, I am out of control when talking to “the man.” This time I focused on my breath, kept my eye on the goal I wanted, and stayed very peaceful. It helps to think of the entire process as a game, and that one rule of the game is to stay calm. I know…. I know… that the stakes parents are dealing with are significantly higher than a traffic ticket fee. But that’s all the more reason to stay calm.

6) Try to identify with the person you are talking to and give them some credit.

Whoops--- To be perfectly honest, I forgot to do this with my traffic ticket. But you can do better than I. Easy things to identify with are: “I know you have a hard job…. what with all of those pesky rules and such,” or “You have done a great job explaining this to me.”

7) Don’t gloat when you get your way.

In my case I only had to pay 58% of the original fine (but who’s counting?). I thanked the supervisor for being reasonable and told him I thought this was a fair settlement. It would NOT be good to say the things that are just itching to come off your tongue like: “Wouldn’t we have saved a lot of time if you were just reasonable from the start,” or “You people are really difficult.”  Remember, you may be back soon enough on another issue.

All of these thoughts will be important as DBMAT tries to advance its legislative agenda. I hope we will be able to report on our success as the year progresses. And my last thought for now is to remind everyone to visit our newly revised website at <http://www.dbmat-tx.org>.  You will find many new features including: online application for membership, contact information for our regional coordinators, online application for intervener scholarships, and fancy opportunity to contribute to DBMAT online and receive a premium of DBMAT cap and cup. See you online!

 

Fall 2008 Table of Contents
Versión Español de este artículo (Spanish Version)

By Vivecca Hartman, Parent Leader & DBMAT Treasurer, Houston

Abstract:  The parent of a child with deafblindness shares her experience in becoming a parent leader and advocating for change.

Keywords:  Family Wisdom, family leadership, advocacy, leadership, family organization

 

I have recently been feeling a sense of awe about the words, “you have power as a parent,” and what it means to be a “Parent Advocate”.

When we first found out about our precious baby’s inability to see, and then a few months later his inability to hear, we were (and probably still are) in shock. For every family the news of any imperfection is overwhelming. Then you start having therapy sessions with Early Childhood Intervention (ECI) which you cling to like butter on toast! Then you find out about other services or groups that are more specific to your child, like The Texas Deafblind Project, and you just start calling until you find a way for you and your family to cope with the daily challenges life brings. Well that about sums up being a parent of a person with special needs. (This is a major understatement—wouldn’t you agree?)

That is how I feel about the term “Parent Advocate.” You will hear it over and over with regard to so many different areas. For me it started in ECI. They would tell me I will learn how to be a “Parent Advocate,” and I would just stare and think, “What does that mean?” Why do people put so much value to that term “Parent Advocate”? I found it quite annoying that people would say this to me with such a nonchalant expectation, and yet I had no idea what it meant.

Well, I have been “in the business” of Special Needs for 10.5 years (my deafblind child’s age), and I think I only recently caught on to some of what they really meant. At first I thought it was being at every therapy session and school meeting; constantly searching the internet (after everyone was in bed) to stay up on all the related research; reading every newsletter and just about anything you can find that is relative to your situation; keeping it all filed and organized; and contacting any services that are related and that can help. Doing this, and all the while trying to maintain a household, be a supportive spouse, don’t forget to parent the other children, and oh, if you work, do a good job at that too.

So, what I realize today is that there are differing levels or steps of being a Parent Advocate. Getting through the first phase of dealing with the news and getting services started is an important step in becoming a Parent Advocate, because you have to start somewhere.

I have been told so many things over the years and read so much, there is no way I could retain all of it. So, in some ways we do filter through all of the information and advice to find what we can cope with. For us, there was a definite stage of filtering through the information and attending seminars while trying to maintain a routine home for the family. We were in this stage for a while. Suddenly, it dawned on me that I do know my family’s needs and my deafblind son’s needs as well. Although, I admit I do (and did) not know everything, I knew enough to speak-up and be heard. I realized I had to be a voice for him and let others know what is important to him. As the “expert” on your child, you have that ability to express to the school (or whomever) what his or her abilities, likes, and needs are. You know what makes your child happy or upset – you are the expert on your child. This is what brings you forward to being a Parent Advocate.

Suddenly I found that I was taking a chance and speaking out to say what my child’s needs are, and people listened!

For example, I knew he needed physical play for both his emotional and physical well being. It was imperative to me that he had it during his school day or we would be going down a very bad road of behavior issues. I took a chance and approached the school principal about a “Sensory Motor Lab” of some sort so he could play in a safe environment.  Unfortunately, due to his blindness and caution on his part, he does not just run and play outside on his own, and he does not currently have enough communication to participate in regular PE. Amazingly, the principal had also been addressed by the Health Fitness Director of the school district about potentially being a pilot school for something called “Action Based Learning.”

Let me tell you, this “Action Based Learning” is a wonderful brain research based physical play program that develops the whole child. It focuses on physical actions that target certain parts of the brain for development. It was originally established to help regular education students with their mathematics and academics, but it also develops the vestibular system and so much more! You can find out more about it at .

The three of us met and devised a plan for how we were going to make this Action Based Sensory Motor Lab a reality. I had said I would do the fund-raising to cover the equipment—which I am sure helped—but I think it would still have happened, just with less equipment. By working together we have been able to make it great for all the students in the school. Now our school district is even considering it for other schools too!

It really does mean a lot when to the school system when a parent feels strongly and is compelled to work with them in determining the means to get things done!

It has been a nice journey so far, finding out what being a “Parent Advocate” would mean for me. While I had mostly been overwhelmed with my child’s diagnosis, wondering what life would be like for him as well as us, been through our “survival and coping stage”, realized we are the “experts” on our son, and now realize we are “Parent Advocates.” What a journey…and it is nowhere near over!

Next, we (that includes you) will have to figure out the legislative processes to further improve the lives of our children. If we do not speak up for them, no one will!

So, good luck to all of you, from the new and old members of DBMAT! You are a Parent Advocate, because you do have the power to affect your child’s surroundings at home and at school, or wherever they may be in life!

Fall 2008 Table of Contents
Versión Español de este artículo (Spanish Version)

 

Editor’s Note:  Several members of the Texas Association for Parents of Children with Visual Impairments (TAPVI) were affected by Hurricane Ike, which prevented them from making the publication deadline. Please go to the TAPVI website at for information about joining their organization. The Texas VI Family Network listserv will post any new developments and information. To subscribe to this listserv, family members must send an email to <>. For more information contact Jean Robinson at 512-206-9418 or <>.

 

Fall 2008 Table of Contents
Versión Español de este artículo (Spanish Version)

By Julie and Mark Martindale, Parents, Anoka, MN                                          
Reprinted with permission from Deafblind Perspectives,

Volume 11, Issue 1, Fall 2003

Abstract:  Parents share the lessons they have learned through their children who are growing from the joys and difficulties they experience in having a sibling who is deafblind.

Keywords: Family Wisdom, deafblindness, visual impairments, sibling support, parent perspective

 

It was a Sunday morning, and we were frantically rounding up our four young children at church, when a few words from an acquaintance stopped us in our tracks. It was Christmas time, and all the children were supposed to sing in the school program that evening. Our son, who uses a wheelchair and is DeafBlind, was going to be part of the program with all the other children. As this person looked down at Aaron sitting in his chair, she asked, “Is he going to be in the program? He can’t sing.” Many emotions stirred in us immediately—anger and hurt at the insensitivity of this individual and even embarrassment and self-doubt. Maybe we should not have put him in the musical.

It was our son Tyler who answered the woman simply and eloquently as we stood there still stumbling for the words to say. Tyler said with confidence and pride, “My brother can sing. He sings with his eyes.” If some day you meet our son Aaron, you will know what Tyler is talking about—because Aaron does sing with his eyes and he says more with one smile than most of us can say with a thousand words.

But it was Tyler who amazed us the most with his answer. It reflected acceptance, insight, and maturity beyond his years. This was a turning point for us. We know that in all the worrying we had done over our typically developing children, we had lost sight of the benefits that come from having a sibling with special needs. It is not an easy road for siblings, but along the way they learn skills and form attitudes that can help them throughout life. Their experiences are not really that different from ours as parents. They didn’t choose this road for themselves, and through the tough times they learn that life is not to be taken for granted. And with our help, they can emerge as stronger, more sensitive, and self-assured human beings, just like us as parents.

We’ve spent a lot of time worrying about the effects of the extra attention that our special needs children get. How could we possibly explain to a two year old why the physical therapist was coming to play with his baby sister, but not with him? She is “special,” but so is he. Was this going to make him feel insecure? Would he feel too much pressure to be the one to succeed because his siblings wouldn’t be able to do all that he was able to accomplish? Would he grow up resentful or angry?

In the book by Donald J. Meyer, et al., Sibshops: Workshops for Siblings of Children with Special Needs (Paul H. Brookes Publishing Co., 1994), the authors list some of the most common concerns that are associated with being a sibling of a child with special needs and also some of the many positive opportunities for growth that siblings have. Here are some examples:

Unusual Concerns

overidentification

embarrassment

guilt

isolation or loss

resentment

increased responsibility

pressure to achieve

 

Unusual Opportunities

maturity

self-concept & social competence

insight and tolerance

loyalty

vocational opportunities

pride

advocacy skills

 

In spite of the difficulties, there are great joys. The siblings see all of it, sometimes more than we do. We have a lot to learn from our typical kids and we are learning to listen to them more and more. We have decided not to worry so much (OK, we know it is easier said than done) about the negative possibilities that can affect our kids. We’re learning to worry less and experience life more. As we seek to enjoy the little things in life and to learn from the difficult times that come our way, just maybe our attitude will shape the attitudes of our children. But most likely, it will be our children teaching us.