Article

How to navigate adolescence, puberty, and teen years with CVI

Our comprehensive guide covers how to navigate your child with CVI's hygiene, sex ed, new routines, social life, and more. You can do this.

A white flower spreads out among red tulip buds.

Adolescence is a whirlwind of change—physical, emotional, and social—and for families of teens with cerebral/cortical visual impairment (CVI), this transition often feels even more complex. Parents grapple with navigating these shifts while addressing unique challenges, such as ensuring access to education, fostering independence, and providing tools for social and emotional growth. 

A handful of qualitative research studies elicit themes that describe how young people with visual impairment experience adolescence. In a PLOS One article, researchers asked visually impaired young people in the UK to reflect on what it is like to grow up. They noted “elements of identity crisis” as they began to think about the future and the “restrictions imposed by VI” (Robertson, Tadić, & Rahi, 2021). In a different study, researchers asked female adolescents with visual impairment how they experience puberty. Agahee-Chaghooshi et al (2023) uncovered worrying emotions, the development of emotional and love needs, lack of information resources on puberty, and redefining social relations with family and others. They say “…it can be argued that a blind adolescent tends to seek isolation due to the community’s negative attitude towards disability or underestimation of their abilities, or the lack of sufficient mobility and orientation skills to limit their access to larger places and communities.” 

The stakes are high. As a parent of a newly minted teenager, I’ve struggled to capture every angle within this article. Adolescents with and without CVI face a complicated world. How in this complex world (made all the more complex by a CVI diagnosis) will my teen have the information and skills she needs to move through adolescence into young adulthood? 

We’ve got you.

This article explores the intricate realities of adolescence for teens with CVI, offering insights, resources, and strategies to support them through this transformative stage of life. Whether addressing hygiene routines, social integration, or sexuality education, the journey requires creativity, patience, and community.

Gold and silver stars hang from a streamer.

The unique challenges of adolescence and CVI

In a Perkins-hosted webinar addressing young adults and sexuality, Katherine McLaughlin, Elevatus Training, reminds us that kids with disabilities have the right to engage in the same conversations about biological changes, gender, sexual feelings, relationships, and dreams for the future as their non-disabled peers. Based on her work with disabled adults, she says this rarely happens.   

Adolescence is complicated for anyone, but for teens with CVI, certain obstacles stand out:  

What are your guiding principles for parenting teens with CVI?

Parenting a teen with CVI requires flexibility and intentionality. Establishing guiding principles can help parents focus on their values and their child’s long-term goals. Consider the following approaches: 

Jump to a section:

Practical tips for hygiene and grooming
Navigating social interactions
The case for accessible sexuality education

A quick note of reassurance

Parents aren’t alone in this. First, we have forums like the CVI Now Parents Facebook Group and telesupport groups like the CVI call hosted by the Lighthouse Guild.

Second, school teams bear responsibility too. Our kids with CVI, just like other students with visual impairment, should receive assessment and specialized instruction in the Expanded Core Curriculum (ECC) to “bridge the gap between a standard school curriculum and what an individual who is blind or visually impaired would miss due to lack of visual access – to instruction, the environment, activities, social interactions, and incidental learning,” writes TVI Emily Cantillon in CVI and the Expanded Core Curriculum (CVI Now). 

Practical tips for hygiene and grooming

When I asked the CVI Now Parents Facebook Group to open up about some of the most challenging parts of adolescence, I heard statements like, “Puberty [is challenging] when you are the caretaker for your child and their personal hygiene. I wasn’t ready for that part for my daughter. It’s like she went from a kid to a woman overnight at 13.” 

Establish at-home hygiene routines

Supporting your child with hygiene and grooming during puberty can be challenging, especially when they require significant assistance. Sometimes it may feel like the easiest course of action is to take the routine into our own hands, efficiently and without much conversation. But we should endeavor to use respectful strategies as we teach hygiene and grooming, which may take more time and effort than anticipated.

Keep in mind the importance of modeling body boundaries and privacy.

This is crucial for all kids, but our kids with CVI may not pick up on these concepts incidentally. 

In a webcast Addressing Issues of Sexuality with Students Who Are Visually Impaired, presenter and blind TVI Jeff Migliozzi explained the moment it occurred to him that people can see you change clothes if you stand in front of a window. He was in the backseat of a car in New York City when his mom shrieked, “My god, she was completely nude!”

Migliozzi explains, “That was the first time I realized… that you could see through a window and that somebody could notice what you’re doing. Up until that point, windows were things you opened or closed depending on the heat and the weather and whether you wanted air or not [or if] you wanted to yell out to somebody.”

Teach them which areas of the body are private and explain who can help with tasks, keeping the language simple and consistent. Reinforce that they have the right to say “no” if uncomfortable and emphasize the importance of consent, even in hygiene routines. Fractus Learning recommends ways to teach body boundaries, like role-playing how to say “no” and creating social stories presenting different situations that vary in risk. (5 Ways to Teach Our Children Body Boundaries

Plan for sensory sensitivities

Puberty brings new sensory experiences, from body odors to tactile feelings like soap or deodorant. Be mindful of sensory sensitivities and offer products or tools that align with your child’s preferences, like unscented lotions, a soft-bristled brush, or warm water instead of cold.

Encourage independence and offer choices

Even small roles give them a sense of accomplishment and ownership over their routine. Respect your child’s preferences by offering options whenever possible. Let them pick their shampoo scent, or choose between two types of soap. This gives them a sense of control over their body.

Celebrate small successes

Recognize small achievements in their routine. Positive reinforcement will encourage them to keep practicing and build self-esteem around self-care.

But Mom, why should I care about self-care?

Sometimes we have to hound our kids—whether disabled or not—to take a shower, brush their hair, or change out of their pajamas because, after all, it’s already the afternoon! Typically, peer pressure and social cues are course-correcting forces. Not always for kids with CVI.

In his presentation about sexuality and visual impairment, Migliozzi goes on to say, “I think that one of the things we have to do is explain to our students what the visual world is, the fact that people can look at you and they’re going to make certain assumptions about you based on the way you look—on the way you dress, the way you’re standing, the way your posture is, whether you’re paying attention or not—they’re going to have certain assumptions, and so we really need them to understand that because they don’t know that.” (Addressing Issues of Sexuality with Students Who Are Visually Impaired)

Tips for home routines

Preview the environment

Of course, just because your child can manage these tasks in a familiar environment doesn’t mean the skills will translate to all scenarios. Like most topics, our kids need previewing and repetition for successful skill acquisition and generalization.

“My child went to a couple of sleepaway camps this year,” one parent explains. “Both experiences rocked, but the second time around I picked up a greasy-haired kid with skin breakouts. I asked if she had been washing her hair and face. She replied that she didn’t shower daily because no one showed her the bathroom layout. This was so different from the other camp experience when she showered every evening. I think it’s because we visited the dorm a few times before camp to orient her to the spaces, including the bathroom.”

Enlist professionals to develop tailored approaches

To determine where to start from a school perspective, you may ask your school team to conduct an ECC assessment or a task analysis of personal hygiene and grooming skills. A few options include:

Explore more: Perkins provides resources on skill building for independent living and Total Life Learning curriculum for all students with sensory impairments.

Assessments like these, or others from related service providers, may lead to IEP goals to help your child acquire a necessary skill. For example, one parent mentioned that her daughter had an occupational therapy goal to develop more strength and dexterity by rolling thick paper to prepare to manage a maxi pad when she got her period.

Look into specialized support and school or community programs that offer reinforcement of these goals. Occupational therapists, special educators, or other specialists can develop tailored routines that address hygiene, grooming, and body awareness skills with CVI-appropriate adaptations and sensory supports. Many professionals use adaptive equipment and strategies that can help your child engage in self-care with greater confidence.

Peers are also powerful teachers. One parent mentioned she is grateful that her son’s “middle school does a boys club that works on hygiene and other changes during this time. I’m ready to learn from others about how to build these new skills.” 

She says the club covers things like what to do if you feel snot coming out of your nose? “They went through the steps of where the tissue station is in the classroom, how many tissues you might need, where to throw it away. Then they explored if they are not in the classroom, where they could find a tissue and spoke about toilet paper in the bathroom.” 

More resources

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Navigating social interactions

The social scene during adolescence can be tough, particularly for teens with CVI. As their self-awareness and need for independence increases, adolescents with CVI will face typical social challenges exacerbated by more limited social inputs. Social skills are largely acquired through visual observation, so we have to intentionally teach incidental skills and prioritize social and emotional well-being. 

One parent writes, “The social aspects are hard because of that self-awareness component. I think she notices more when she’s not included. She also notices when her brother can do something and she can’t do it as easily. She gets frustrated and CVI meltdowns aren’t as cute or widely accepted by society when they are 13.”

Here are some common hurdles and tips for addressing them: 

Difficulty reading non-verbal cues

Teens with CVI may struggle to interpret facial expressions, body language, and other subtle social signals. They may also have less nuance in perceiving social boundaries, like personal space. 

Tip: Help by describing social cues in everyday contexts. 

“When my daughter was in virtual school, the teacher asked the students to give the ‘thumbs up or thumbs down’ sign to indicate they understood,” one parent remembers. “Well, my daughter thought she was supposed to tuck her thumb into her fist to make a ‘thumbs down.’ We quickly noticed the misunderstanding, but you can imagine how things could quickly go wrong when you can’t see a non-verbal cue or don’t understand what one means.”

Limited access to cultural references

Teens with CVI may miss out on pop culture trends or slang. 

Tip: Spend time discussing these topics to help them connect with peers. For AAC users, add some of these terms to their devices.

“We spent one evening going over all the Gen Alpha slang that kids use these days,” says a CVI parent. “We have two middle schoolers. Our child without CVI watches YouTube videos and pays close attention to the social situation at school, in contrast to our child with CVI. So, we rely on her to help us understand words like ‘skibidi toilet,’ ‘fire,’ ‘rizz.’ Then we shared some lingo from our childhoods (like ‘talk to the hand’ and ‘da bomb’), which we were informed are ‘cringe, please stop.’ I think it’s important for both our kids to at least understand the references, even if they don’t use them in conversation.”

Barriers to shared activities

Social bonds are often formed through shared activities, like playing sports and attending events. Teens with CVI may feel disconnected from typical adolescent interests and conversations, which can make it difficult to bond with peers and feel accepted. 

Tip: Encourage participation in accessible events, even in short bursts, to help your teen build connections. 

“I am much more aware of my son’s need for social interactions and events,” one mom explains. “I took him to see his classmate play football. His friend was so excited when we showed up, even if my son could only tolerate being there for 15 minutes.”

Stereotypes and ableism

Many people have preconceived notions or misunderstandings about visual impairments, which can lead to exclusion, bullying, or patronizing interactions. 

Tip: Educate your teen about ableism and empower them to advocate for themselves when necessary. We won’t dismantle ableism single-handedly, but we can start by learning to recognize how ableism pops up daily. 

Find resources and discussion around CVI and ableism.

Grace Marquardt, a middle school student with CVI, has experienced whispering behind her back and demeaning questions to her face, which she writes about in a CVI Now article on ableism in her life. She says one particular moment “made me feel like I can’t get around without people wondering what’s ‘wrong’ with me, and like I’m an exhibit in a museum. Like they can just stare at me and it does not hurt my feelings.” Recently, she noticed a class lesson on bullying didn’t mention ableism, so she spoke with her school counselor to see how it could be incorporated. Small steps!

Overprotective, hovering caregivers or aides

Well-meaning adults may shield adolescents with visual impairments from social situations, fearing potential difficulties or discomfort. They may also jump in to assist or make decisions for the kid with CVI so often it signals to peers they are incapable or childish. While intending to be protective, this approach can limit social exposure and learning opportunities. 

Tip: Allow them the dignity of risk.

In a Perkins panel discussion on preparing students with CVI for life after high school, Mara LaViola discussed self-determination and ways to let our kids make decisions with guided support. She says that with her son, she has learned to embrace the idea of  “giving him options for making choices and accepting the idea of dignity of risk.” This crosses her mind frequently, as he goes out into the community and studies at Perkins School for the Blind as a boarding student. 

Pressing, practical concerns

Low self-esteem or confidence, feeling overwhelmed or tired, or for some, being more focused on building practical and adaptive skills or managing other disabilities through therapy, doctor’s appointments, and ESY, can impact building social connections with peers. 

Tip: Look to adults with CVI to expand your understanding.

People with CVI often deal with chronic fatigue, too, which limits the amount of time they can get together with or make new friends. At the 2024 Perkins CVI conference, adults with CVI shared that they need at least a full day every weekend to recuperate from a standard week of school and/or work leaving us to wonder, when do they have the chance to socialize? (4 topics expertly addressed by adults with CVI at the 2024 Perkins CVI Conference)

Social connections can be nurtured with intentional skill-building, inclusive environments, and supportive conversations.

The case for accessible sexuality education

Sexuality is an important topic during adolescence, but teens with disabilities often lack access to meaningful, inclusive health education. (Krupa & Esmail, 2010; Czerwinska, 2018) This gap can leave them vulnerable to misinformation and harm. “Research shows that students with visual impairments who do not receive the required sex education in a manner that is meaningful to them still participate in sexual experiences but are left to their own devices for learning rather than through formal educational programming.” (Wild, Kelly, Blackburn, & Ryan, 2014)

Start early by discussing body changes, relationships, and boundaries in a developmentally appropriate way. Use explicit and accurate language when describing body parts and other health concepts. Use inclusive language, too. (For example, instead of asking “Do you want a boyfriend?” or “Do you want a girlfriend?” ask “Do you want a partner? A sweetheart?”) 

Consent is a crucial concept—model it in everyday interactions to reinforce its importance. Whether we’re allowing our young kids to choose how to say goodbye to a relative, rather than the obligatory hug, or we’re offering older kids privacy during their hygiene routines, we are demonstrating that they get to make decisions about their body, that no one gets to touch them without permission.   

Collaborate with the school to ensure your child is included in health education classes.

Where resources fall short, explore specialized materials, like the Health Education Guidebook for Students With Visual Impairments, to teach these concepts at home.  

A CVI parent recounts the day she was called into school for a discussion. Her son had been sent to the office for putting his hands down his pants during class. He was trying to adjust himself and did not know that class was an inappropriate place for this. She says she never thought to explicitly mention it.

“The body is changing from a child’s body to an adult body and there are many changes we want to talk about with young people so they know what to expect,” Katherine McLaughlin, Elevatus Training, says in a Perkins-hosted webinar addressing young adults and sexuality. It helps to be prepared to listen, support, and approach conversations without judgment. Topics may include the development of relationships, gender identity, sexual orientation and different types of attraction (affectional, romantic, erotic), sexual expression and behavior, and self-esteem. 

Don’t let your child be excluded from health education

State legislation and policies impact what is taught in schools (find your state). Some schools offer no sexuality education for their students in general or for students with disabilities in particular. Of the people she works with, McLaughlin says that many report “they were in the mainstream health class in high school and they were learning about nutrition, then they were removed when the sexuality unit started.”

You may find that you have to seek formal sex education on your terms. CVI parent and social worker Johanna Mabry did.

“When my daughter was going through the sexual health curriculum provided in school, I asked the school to confirm that the curriculum would affirm her family. My daughter has lesbian moms, and I wanted the lessons to point back to real-life experiences. And the answer I got was to go talk to administration.”

This prompted Mabry to find other resources that were more inclusive and that discussed more than basic anatomy and abstinence because she says “people with disabilities are vibrant sexual individuals who deserve to have access to intimate relationships and understanding those parts of themselves.” She found Elevatus, a national leader in sexuality training for individuals with intellectual developmental disabilities. Though not specifically modified for visual impairment, Mabry appreciated that each training group is run by somebody with an intellectual disability who has prepared to co-facilitate with another trainer. She also says, “The parent training is excellent, and I highly recommend it for parents to be able to even think through and recognize their own biases around sexual identity and gender identity and relationships and also and to get the right language because often we struggle as we’re evolving to be more inclusive.”

Make it meaningful

Relevant methods and materials must be used to make sex education effective, for example, tangible models of anatomy, contraceptives, or hygiene products. 

Recently, I asked a friend of mine who is also raising a teen with a visual impairment to get together to make homemade anatomical models of male and female genitalia. She didn’t bat an eye. Using the directions in the Health Education guidebook, we gathered supplies and spread them out on the craft table.

The guidebook also shows how to make homemade models and demonstrations of a sperm cell, male and female reproductive anatomy, the process of conception, menstruation, frothy or abnormal discharge, genital warts, pubic lice, what oil-based lubricant will do to a latex condom, and what happens when a drink is spiked.

Considerations for teaching sex ed to CVI students

Adolescence is a pivotal time for identity formation, self-discovery, and skill-building, and this holds for teens with CVI. While the journey may present unique obstacles, it is also filled with opportunities to empower young people to thrive. By approaching this stage with empathy, flexibility, and determination, parents and care partners can help their teens develop confidence, self-reliance, and a sense of belonging. Remember, you are not alone—support networks, professionals, and resources are available to help navigate the challenges and celebrate the successes. Together, we can ensure that every adolescent, including those with CVI, transitions into adulthood with the tools and support they need to live a life of joy and belonging.

References

Robertson, A. O., Tadić, V., & Rahi, J. S. (2021). This is me: A qualitative investigation of young people’s experience of growing up with visual impairment. PLOS ONE, 16(7), e0254009. https://doi.org/10.1371/journal.pone.0254009
Aghaee-Chaghooshi, S., & Falsafinejad, M. R. (2021). Puberty challenges of female adolescents with visual impairment. British Journal of Visual Impairment. https://doi.org/10.1177/02646196211019069

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