FamilyConnect: A Parent's Voice
by Shannon Carollo
Those of you who have young children recently diagnosed with blindness or a visual impairment, the intensity of emotions you are feeling is not overlooked. We recognize you’re in a deeply painful waiting room. You don’t know how to envision your child’s future; you wonder what services your child will need and how you will get them; you wait to one day overcome grief and accept all that is. You look to your right and left, and it feels as if nobody else is waiting with you.
We at FamilyConnect do not want you to wait alone. We’re here. We’re here to connect you with other parents of children with blindness and visual impairments; we’re here to connect you with resources specific to raising a child who is blind; we’re here to give you encouragement and hope. We are here to support you.
I think these 10 resources will provide you with connections, resources, encouragement, and hope:
- Connect with other parents of children who are blind or visually impaired using FamilyConnect’s Message Boards.
- To understand you are not alone, read the heart-wrenching account of “How We Felt Learning Our Child Would be Blind: Two Difficult Months.”
- Read To My Son With Love to hear Susan LaVenture discuss her then-infant son’s “diagnosis day” and discuss her son’s career accomplishment.
- Read FamilyConnect’s article series Emotional Impact of a Child's Blindness.
- Read our Overview of Services for Children Who Are Blind or Visually Impaired.
- Read the article series Working with Your Child's Medical Professionals.
- Peruse the information and resources in our Babies and Toddlers Who Are Blind or Visually Impaired section to learn about the growth, development, and learning methods of little ones who are blind or visually impaired.
- Peruse the information and resources in Tips for Families of Children Who Are Blind or Visually Impaired to learn about using life experiences as teachable moments for your child.
- Look at Helpful Products and Toys for Parents of Children with Visual Impairments.
- Read Success Stories from CareerConnect to learn about many vocationally successful adults who are blind or visually impaired.
Lastly, please join the FamilyConnect community. There are several full-time parent bloggers contributing to FamilyConnect. You can request e-mail updates for these blogs, and track your favorite message boards, by registering with FamilyConnect.
- A Parent's Voice—various contributions from professionals and parents just like you
- Raising a Child Who is Blind and...—Emily Coleman's blog about parenting three unique children including her middle child, Eddie, who is blind with multiple disabilities.
You are not alone. We are here to support you as you get to know your child, teach your child, advocate for your child, and love your child unconditionally.
by Susan Harper
In case you haven't noticed by now, let me point out that I am fiercely independent! I am an advocate for family-centered services. I don't like (very mild word) bureaucracies that exist for the good of the agency rather than the client. I'm rather outspoken. And I have to sit with my hands over my mouth when in any kind of meeting where I'm going to say something I shouldn't or that is in anger. I have that conversation in my head, so it won't slip out. Anger, while it might make you feel better, is destructive to what you want to gain. I work really hard to remain positive. It is that Yankee independent streak!
My pet peeve is "Learned Helplessness! It is when someone waits for help or prompts before doing whatever. They have learned that if they can't do it or don't like to do it that someone will do it for them if they wait long enough. I remember a teacher telling me what a great student my son was. "He sits in the back of the room and doesn't bother anybody." Forget the fact that he didn’t learn anything. This was years ago, but still holds true today. Classes are larger and student's needs are even greater.
What is learned helplessness?
"...Any extended period of negative emotions can lead to you giving in to despair and accepting your fate. If you remain alone for a long time, you will decide loneliness is a fact of life and pass up opportunities to hang out with people. The loss of control in any situation will lead to this state. A study in 1976 by Langer and Rodin showed in nursing homes where conformity and passivity is encouraged and every whim is attended to, the health and well-being of the patients’ declines rapidly. If, instead, the people in these homes are given responsibilities and choices, they remain healthy and active. This research was repeated in prisons. Sure enough, just letting prisoners move furniture and control the television kept them from developing health problems and staging revolts. In shelters where people can’t pick out their own beds or choose what to eat, the residents are less likely to try and get a job or find an apartment..."
"...Choices, even small ones, can hold back the crushing weight of helplessness, but you can’t stop there..."
"...When you are able to succeed at easy tasks, hard tasks feel possible to accomplish. When you are unable to succeed at small tasks, everything seems harder..."
(All quotations above are from articles on learned helplessness by David McRaney, November 11, 2009.)
It is important that our children have responsibilities and choices. It is okay to let your child fail, stumble, try, etc. but be there to help, kiss boo boos, encourage, instruct, but don’t do everything for them that they can do for themselves! Well-meaning people will rush in to help. I find myself as well wanting to do this. It is a natural response to want to help, especially your child. By all means step in and help if safety is an issue. I’ve learned it is okay to let Vinnie stumble if he isn’t using his cane and I know he won't get hurt, but he will learn he should use that cane. It is his responsibility and he has a choice.
Don’t do for your child what he/she can for him/herself. Give choices, chores, responsibility, etc. within the child’s ability level. Encourage and reward the behaviors and learning, even if the gains are small. Sometimes, it means waiting and listening rather than jumping in to correct or rescue. It sometimes means making sure others are not helping with the things your child can do. This is a delicate balance, in order to teach rather than alienate a resource. One church we attended did not think my son could do things because of his blindness. The other church asked, "What can I/we do to make Sunday School/Church more meaningful?" Which church do you suppose we attend?
Failure is an opportunity to learn. We stress to our home school children that pencils have erasers to help correct our mistakes. Obviously, people must make a lot of mistakes, because every pencil comes with an eraser and computers come with auto-correction. As long as failure is not personalized, but is seen as an opportunity to learn, you can avoid "Learned Helplessness".
Home school parents must find ways to adapt and change so our children will succeed. My father always told us growing up, "You can do anything, if you can read." He only had an 8th grade educational level. He was a talented and successful carpenter, who built the local high school shop building. The irony was that he couldn't substitute or guest teach the shop class because he only had an 8th grade education. He made sure we went to school. Reading is important to literacy, no matter your level of education.
There are a lot of great people who have contributed to braille learning and education, most notably, Louis Braille and Helen Keller. These folks did not give up and I can only guess the number of mistakes they made, but they succeeded in spite of their failures. They had the desire and encouragement to keep trying. That is the spark as a parent you want to ignite for both you and your child!
Each child deserves an education regardless of their different needs. That education should be preparing a child to live as independently as possible in the world, whatever that independence looks like. The first two sentences I taught Vinnie to write are: "I can do it!" and "My name is Vincent Harper!" We have written these two affirmative sentences every day on his brailler since we started school, even before he could read what he wrote.
You have a choice and a responsibility to educate your child/ren. I didn’t think I could home school a blind child, but I’ve learned that I can teach my son. I am to learning right along with him. I was afraid of braille, overwhelmed with the task at hand. But I made a decision. If my son can do it, I can too! I am blessed with an excellent Teacher of the Visually Impaired (TVI) and I live in a state that has liberal laws regarding home schooling. Maine has a large population of home schooled children.
Have I made mistakes? You bet I have. I’ve had to rethink, redo, start again, learn a new way of reading and writing, but it is worth it. I learned the way my son learns, so I/we can teach to his strengths. He amazes me every day.
I also want to direct you to a great article on home school and an excellent website with resources on home schooling. You can access it by going to: http://lauragraceweldon.com/2012/01/02/school-add-isnt-homeschool-add/. Laura Weldon writes about her decision to homeschool her son:
"...school systems that were, by necessity, not designed to handle individual differences..."
"...children don’t fare well as passive recipients of education. They want to take part in meaningful activities relevant to their own lives. They develop greater skills by building on their gifts, not focusing on abilities they lack..."
There are options and choices regarding homeschooling. If you think that because you do not have an advanced degree or a degree in teaching that you can’t teach your child, THINK AGAIN! You aren’t going to be perfect in your home schooling, so cut yourself some slack. Give it a year. It is a lot of work and is not for everyone. Those of you who stick with it will wonder why you didn’t start sooner and what were you afraid of? You will learn braille and a lot of other tools that are helpful. Be adventuresome. Ask for help, seek out resources, be creative, and learn with your child.
Enjoy the journey!
by Shannon Carollo
I haven't been to an American Foundation for the Blind (AFB) Leadership Conference before, but this year I'll be there.
Come March 3-5, 2016, I'll be in Washington DC to help man the conference registration table, to take notes and blog about pressing topics, and to meet you. Let me tell you that without a doubt I am most excited to meet you. If you can make the conference, please do say hello.
Parents, I hope many of you can attend. Check out the conference information here and register before February 12th for the best rate. Take a look at the 2016 jam-packed agenda and tell me what sessions you'd be most interested in attending.
Below are the sessions, summits, and seminars I'm most anticipating:
- "Cerebral/Cortical Visual Impairment: A National Conversation"; here, parents, teachers, and university faculty will discuss and develop practical outcomes that will positively impact the CVI population.
- "Transition Summit"; here, participants will share and learn about successful programs for equipping teens for their transition out of high school.
- "The Parent Perspective on the Role Specialized Schools Play in Facilitating Independence: A National Study"; here, a summary will be given of a study on how parents of blind and visually impaired children view specialized services in terms of preparing their children for adulthood.
- "Recalculating Our Route: Updating Our GPS to Navigate the Future of Services and Opportunities for People with Vision loss"; here, the group will discuss how to protect and strengthen vision-related services.
So why can parents get excited about the upcoming AFB leadership conference?
You will not only attend to learn from the experts in the field of blindness and assistive technology, but you will also attend to be a voice for children with visual impairments and their parents. The "field experts" want you there as the expert on your children. You have a voice, and the blindness-professionals want to hear it.
And just as I truly look forward to meeting and connecting with you, I know you would love to meet and connect with each other. The opportunity to talk with parents sharing similar circumstances is precious. So get excited about the education and get excited about the support of the community.
- Readers Want to Know
by Catherine Duffek
Hello! I'm Catherine Duffek. I am now in my early 70s and I grew up with congenital glaucoma. I lead an active productive life and happily I still have my vision! To keep this vision my parents taught me their recipe for monitoring my glaucoma. It's simple — never become complacent about the signs and symptoms of elevated intraocular pressure.
It's now January when we observe "Glaucoma Awareness Month." I thought this might be a good time to review the signs and symptoms of this sneak thief of sight even if your child's glaucoma is currently under control.
- redness of the eye
- excessive tearing without discharge
- sensitivity to light, squinting, turning away from light
- pain in the eye or a feeling of "something in the eye"
- cloudy or milky white cornea
One or more of these signs and symptoms together may be an indicator of abnormal intraocular pressure.
With great enthusiasm I will be starting the Lighthouse Guild Glaucoma TeleSupport Group for Parents of Children diagnosed with glaucoma. The primary mission of this group will be to address specific issues which parents of children and children with glaucoma encounter. If interested, you are encouraged to join this group. The meetings are FREE. For more information or to join, please contact me at firstname.lastname@example.org Susan LaVenture at LaVentureS@lighthouseguild.org
2016 brings hope for early diagnosis and the safeguarding of vision through public education and awareness programs, such as those through www.FamilyConnect.org with the American Foundation for the Blind and the National Association of Parents of Children with Visual Impairments of Lighthouse Guild.
For more information about childhood glaucoma, please visit: American Foundation for the Blind, Children's Glaucoma Foundation, National Association for Parents of Children with Visual Impairments of Lighthouse Guild, or National Eye Health Education Program. For adults with glaucoma, AFB's VisionAware website has extensive information, including a patient's guide to living with glaucoma that is now available in Spanish: Guía del Paciente: Vivir con Glaucoma.
by Scott Truax
Valentine's Day is right along the corner. Nothing could be better than to give or receive a fully accessible card in braille. This is possible but time is running out. We have several recommendations but they are time sensitive so check out our Valentine's Day Card, Craft, and Gift Ideas for Children Who Are Blind or Visually Impaired page right away.
As Valentine's Day approaches, how do you support your child's impulse to create a handmade gift for grandma and grandpa, or in later years, keep up with the inevitable demands for cards for all of your child's classmates? If you're Emily, you try bribery.
If you are working with an early intervention program or a TVI, ask your favorite teacher for suggestions! And don't forget to check FamilyConnect's Calendar of Events to find arts and craft programs near you.
Get creative: make your own puffy paint or (depending on your child's age) make some pudding and let your child use it as finger paint! Wikki Stix are another great way to create tactile graphics, or your child can create outlines with the Wikki Stix, and then trace around them to independently create a 2d drawing.
Make cupcakes or cookies together. Our article on Increasing Your Preschooler's Independence in the Kitchen offers some suggestions for including even very young children in kitchen projects.
WonderBaby offers Sensory Art Tips to help you "move beyond the visual" while exploring creativity with your children. Check out their list of Tactile Arts and Crafts for Blind Children for inspiration.
The National Braille Press also offers a number of great Valentine gift ideas, including jewelry, books, magnets, and print/braille Valentine's cards. Seedlings is another good resource for print-braille-picture books, as well as fun braille gifts.
Wishing all of you and your families a very heartfelt Happy Valentine's Day!
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