The Love Your Child Who Is Blind or Visually Impaired Needs
by Shannon Carollo
This is far from a lecture, but an invitation to a discussion. I want to pose a question and I'd appreciate your input. I’ll give you my thoughts; know that I'm coming from the angles of both a teacher of students with visual impairments and a parent. I need your expertise as a parent of a child with a visual impairment (an expertise I do not have.)
What expressions of love does your child (who is visually impaired) need from you?
As for my input:
Loving a child with a visual impairment is no different than loving a child without a visual impairment. After all, the most important components of loving any child are demonstrating unconditional love and meeting the needs of the child even when it comes at a high cost to the parent. No different.
On the other hand, expressing love to a child with a visual impairment includes more dimensions; more actions. I think it includes:
- Investing much more intentional time to teaching concepts and tasks.
- Advocating for your child’s accommodations and specialized instruction.
- Learning about blindness, learning about http://www.familyconnect.org/info/after-the-diagnosis/success-stories/13 adults who are thriving and happen to be visually impaired, and learning how your child learns.
- Encouraging and expecting your child to engage in the world around him, even when it involves uncomfortable risk. I’m thinking about Orientation and Mobility training, cooking, and other independent skills.
- Processing and handling comments, questions, and expectations about blindness from the general population.
What am I missing and what do I have wrong?
I think this discussion is helpful for self-reflection as well as preparing new parents of children with visual impairments.
Looking forward to hearing from you,
- Personal Reflections
Re: The Love Your Child Who Is Blind or Visually Impaired NeedsPosted by nayeliniz on 2/17/2016 at 10:18 AM
Shannon my name is Brenda and my daughter was diagnosed with Peters anomaly on her left eye only. I was wondering how could this affect her development. I am heartbroken an DC I don't know how to handle the situation please advise.
Re: The Love Your Child Who Is Blind or Visually Impaired NeedsPosted by Shannon Carollo (TVI, O&M) on 2/17/2016 at 12:58 PM
How old is your daughter? It sounds like her right eye has good vision?
Re: The Love Your Child Who Is Blind or Visually Impaired NeedsPosted by switte on 2/17/2016 at 1:30 PM
Hi Shannon. My son was born blind and is now 20 years old. We have learned a lot together. Here are the things that stand out for me:
1. We teach him that he is a person, that happens to be blind. There are many more facets to his personality and life, so the blindness doesn't shape who or what he is. It always will to a certain extent, but this can result in positive traits such as compassion for others. We focus on fully participating and adapting where needed.
2. Our children will show us how they learn. When my son was young he had a very wise O&M teacher who taught me this. "Just watch him" he said. He also said "Just keep giving him opportunities." I have remembered these two things always.
3. Set reasonably high expectations so they can show you what they are capable of. If you allow others to set low expectations, you and he may never know his abilities, and he may begin to have low expectations of himself. Everyday there will be people with low expectations, often subtle, in the form of "helping".
Re: The Love Your Child Who Is Blind or Visually Impaired NeedsPosted by Shannon Carollo (TVI, O&M) on 2/17/2016 at 2:33 PM
Thank you so much for your input and wisdom.
Re: The Love Your Child Who Is Blind or Visually Impaired NeedsPosted by nayeliniz on 2/17/2016 at 3:47 PM
Yes my daughter's right eye is fine. We decided not to do the corneal transplant due to poor prognosis and because specialists do not recommend it because of what it will take away from her. I feel guilt. I don't know if this is the result of something I did during my pregnancy. I feel worry she will hate me when she growas up. I worry about bullying. I feel alone this is why I am looking for support. How can I help my daughter develop a great self-esteem and learn to ignore hurtful comments. When should I he talking to her about it?
Re: The Love Your Child Who Is Blind or Visually Impaired NeedsPosted by nayeliniz on 2/17/2016 at 5:25 PM
SHannon my daughter is 2 months old today.
Re: The Love Your Child Who Is Blind or Visually Impaired NeedsPosted by Shannon Carollo (TVI, O&M) on 2/18/2016 at 1:01 PM
You are grieving the loss of sight and different appearance of your daughter's left eye for sure. There are so many parents connected to FamilyConnect that are right there with you or have been right there where you are. I think it would be very helpful for you to write your feelings on the message board and listen to the encouragement of other parents.
Next, please see this recent blog post on resources for families with blind or visually impaired babies: http://www.familyconnect.org/blog/familyconnect-a-parents-voice/ten-invaluable-resources-for-parents-of-babies-and-toddlers-who-are-blind/12
Next, I believe you will come to realize that your daughter's vision is one aspect of who she is. (Read the above commenter's words stating the same thing.) She will learn to work around the visual impairment in her left eye and it will not stop her from being who she is or accomplishing what she wants. As you believe that, and she realizes she is loved unconditionally (I have no doubt she is), you will talk to your daughter about her vision. She will likely accept herself because you accept her. In time (adolescents perhaps) she may grieve as you are grieving now, but it will not be the end of the story.
Please know that her visual impairment is not caused from anything you did in pregnancy. It is a random part of her genes. That's all it is, a part of your daughter.
Re: The Love Your Child Who Is Blind or Visually Impaired NeedsPosted by Susan Harper on 2/19/2016 at 9:08 AM
Shannon, my sons, twins are 9. You are right on. All those things need to happen. I had a hard time connecting initially because of the lack of eye contact with one of my sons, Vinnie. vinnie is totally blind, with the exception of light perception at 5 o'clock in his left eye. His issues were due to ROP. He and his twin are lucky to be alive. The other twin has visual problems and is slowly losing sight in his lazy eye. Surgery is not an option because he also has a shunt for hydrocephalus (water on the brain, the ventricles in his brain don't drain properly, so he has plastic drain from his brain to his belly) and a seizure disorder. When the shunt acts up and needs to be replaced or has a plug and clears on its own, it causes internal pressure in the motor area. Brandon however is able to function at least today in a fully sighted world, but may have further vision related issues in the future. I was their foster parent and had my hands full. I had no idea about visual impairments. I've dealt with a lot of differences both personally within the family and professionally. I was lost with the blind issues because there are so few children who are blind from ROP due to better treatment of these little preemies under two pounds. That being said, let me get back on topic. I had a hard time connecting to Vinnie without eye contact and the lack of his response to me visually. I was the one who had to learn. I felt a great loss that he wouldn't see things like the Christmas Tree. I'm a huge lover of all things Christmas. What I began to realize was these were my issues, not his. It was my responsibility to make sure these issues stayed mine. So, as you are going to hear over and over, a good TVI (your most valuable resource ever!) helped. Now fast forward and give you some perspective. We adopted a son with no arms 35 years ago and no one knew what to do. We raised him alongside his siblings with the same expectations. At age 6 he was diagnosed with a mild hearing loss. He wouldn't wear hearing aids. I asked him why. He said, "They make me look different. Everyone knows me as Sean with no arms." He had a positive self image just the way he was. I use the same lessons with Vinnie who is blind. I am rearing him along with his (currently 3) siblings. We do have to pay attention to learning and teaching blindness skills along with everyday needs that all children have. Once I got over the hurdle of loving my son without eye contact, he was mine. You love people in spite of their imperfections and find way around those imperfections. Otherwise, my husband and I would not have been married for 40 years! LOL
Re: The Love Your Child Who Is Blind or Visually Impaired NeedsPosted by sarahdm on 2/19/2016 at 10:49 AM
I like this question, and the points you bring to the discussion are definitely on par.
I am the mama of a 4-year-old girl with a great sense of humor, a sweet spirit, and blindness (LCA: Leber Congenital Amaurosis). I also have an education background, have worked as a braillist for 3 years, and am currently in grad school to become a TVI.
"What expressions of love does your child (who is visually impaired) need from you?"
(1) Our worry, our pain, our sadness.
I know this seems counter-intuitive, but being honest with our own expressions of fear, anxiety, isolation, suffering, confusion, anger, etc. when we first find out our child is "different" than what we imagined is vital to our healing as parents. I never thought I'd be a parent who would mourn the loss of her assumed idea of a "typical child," but I was. I know that sounds horrible, but it's what I experienced and I must be true to myself. I always thought I'd be immediately loving and accepting of my baby regardless of the circumstance. But most never think that THEY will be the one who has a child with a diagnosis. I certainly didn't. I had dreamed of a child who I could "show the world to." When I realized that those ideals wouldn't be as I'd imagined, my world came crashing down. Without even being aware of it, our child needs us to allow ourselves to face these feelings so that we can get through them and/or get help for them.
(2) Our acceptance.
Eventually, though, I did heal. It wasn't without the support of my husband, my family, my friends, my early intervention community (Delta Gamma Center for Children with Visual Impairments), and online communities like NOPBC (National Organization of Parents of Blind Children) on Facebook (more on that later). After allowing myself to move through four of the "5 States of Grief," I finally reached acceptance. For me it happened when my daughter was about a year and a half. I became overwhelmed one night while looking through a handbook for parents of children with VI, began to cry, and realized I needed to see my sweet little girl. She was lying in her bed asleep, and I reached my hand in to feel her chest rise and fall as she slept so peacefully. It was then that I realized how PERFECT she was exactly as she is. And how desperately I needed myself to accept that. It was my epiphany. And I started seeing her in the way I do now -- that blindness IS a part of her in WONDERFUL WAYS, too. It's hard to put these thoughts into words, but I believe that my daughter's experience of the world is different in ways that I can only partly understand. It appears that without the distraction of sight, that she is more aware of other aspects that people with sight might miss. Not accepting her as different than my original idea was my hang-up, and I don't think that it is really so different than others' hangups about how life "isn't" how they thought it would be.
(3) To stop making life an ongoing therapy session.
Even though they were life-saving to us, one thing that was troublesome to my husband and I was the over-emphasis on therapy during early intervention. I am a HUGE advocate of early intervention and believe with everything in me how vital it is. However, often we felt exhausted by the constant game of catch-up that we felt we were playing within our relationship with our daughter. She was, in her early years, ALWAYS behind on milestones no matter how many therapies we had per week or how much of those therapies we'd repeat with her during our time together. Each time we met with therapists and she had barely improved, we were disappointed in ourselves and our child. I often felt like a failure. It could steal our joy away. I got to the point that I wasn't enjoying my time with her because nearly all of our free time felt like MUST be spent on therapy. Our children need us to find balance -- a reasonable time spent on "intentional time to teaching concepts and tasks," perhaps an integration of this teaching into our daily lives that doesn't feel contrived and unnatural. All children are taught by their parents, all children-without-sight need their parents to teach them the concepts and skills they're not experiencing incidentally with vision, but all children ALSO need to simply be loved, snuggled, tickled, and laughed with. Just as all parents need to just be a parent.
(4) To find our "tribe."
As I said above, being a part of "blindness communities" like the Facebook group NOPBC has been a huge blessing for us. It has taken us out of our feelings of isolation, we have met some great kids and parents, and it takes away a surprising stigma that blindness is "unique" and deserves some special recognition (which doesn't send a good message to society NOR does is it a healthy concept for the child). Basically, we just want to feel normal. Being around people experiencing things like us makes us feel that way. We feel accepted. Understood. I believe this then opens us up to see the connections we have with all people -- even the ones who experience life and parenthood in more typical or different ways than we do -- and we do the same for them.
Hope this helps!
Re: The Love Your Child Who Is Blind or Visually Impaired NeedsPosted by sarahdm on 2/19/2016 at 12:23 PM
[I keep thinking of more things to say!]
(5) To believe in them.
We must always, always, always make it known to our kids that we believe in them. That we believe in them to be independent, successful, pursue their dreams, and be happy -- just as any other parent would. We must de-emphasize the "help" culture surrounding our kids by reminding them how capable they are in our words, and in our actions.
"You can do it."
"Try it yourself first."
"Let me see how you ___."
These are all messages that tell our child that they do not NEED to be over-helped. We must also have the patience to not step-in and give them the time they need to practice things, especially ones that are more difficult for them to accomplish. Of course, we all need help from time to time, but to ensure that our kids believe in themselves to accomplish what they set their minds and hearts to do, we must believe it, too.
Re: The Love Your Child Who Is Blind or Visually Impaired NeedsPosted by sarahdm on 2/19/2016 at 12:24 PM
... and to give them opportunities to help, too.
Re: The Love Your Child Who Is Blind or Visually Impaired NeedsPosted by Shannon Carollo (TVI, O&M) on 2/19/2016 at 1:32 PM
Thank you, thank you, thank you for all those rich points, Susan, Sarah, and "switte". Goodness, you all are right on, very encouraging, and bring the focus of parenting back to what it should be (acknowledging and working through your own feelings, loving/ enjoying your child, high expectations, etc.). I look forward to pointing parents of newly visually impaired children to your words/ this discussion.
Re: The Love Your Child Who Is Blind or Visually Impaired NeedsPosted by nayeliniz on 2/25/2016 at 12:00 PM
Susan and parents of children who are blind on one eye . My daughter was born with Peters Anomaly corneal opacity on her left eyw. Right eye is fine. Most doctors don't recommend corneal transplant because of its implications ( multiple surgeries, risks that could result from frequent anestesia, PTSD, amblyopia ). A neuro surgeon said my child will grow up and develop like any other child. He states my daughter will have a better quality of life without surgery that having one. What should I do? I need opinion from parents who live with it?
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