Parent Taking Child with CVI To Schoo

Back to School for a Learner with CVI

It’s that time of year.  Many teachers and students are returning to their school year routines.  For your learner, this might bring on stress, worry, and fears.  Parents might begin to have questions about the upcoming year and what their child can expect.  Professionals may begin sending home welcome letters, introducing themselves to the family.

For your learner with Cortical Visual Impairment (CVI), these things could be helpful, but will they be enough for all the novelty and complexity they might encounter?  Is there anything else that can be done to help prepare a learner with CVI?

We have compiled some ideas for the entire Individualized Education Plan (IEP) team to consider. 

I. First, begin by reviewing what is already known about our learner.  Take the time to review the latest IEP.  Remind yourself, and each other, what is needed for your learner’s success.  For team members who are familiar to the learner, re-read the learner’s present level of performance that was written in the last IEP.  Is this information still accurate?  In order to ensure you are providing the best intervention strategies, we have to work from quality data.  Does anything within this document need to be updated?  Is any additional data needed to make any of these decisions?  

Remember some changes to an IEP can be made with an addendum; meaning an entirely new IEP is not necessarily required if changes need to be made.  This includes any medical changes that may have occurred since the team last met.  If the child has had any recent diet, sleep, or medicine changes that will impact their education, it should be documented in the IEP.

II. While you’re looking at the IEP, take a close look at the child’s last CVI Range assessment.  Children with CVI are expected to make progress.  Is the information from this assessment still accurate?  Depending on when the last assessment was completed, your team may need to update this valuable information.  As a team, determine if a new CVI Range needs to be completed.

III. As you look at this important baseline for your learner, consider which staff will be working with your learner this year.  Are there any new team members?  In education, it is always important for team members to understand the needs of the whole child.  A learner with CVI brings additional elements of concern.  Most professionals have never received formal training about cortical visual impairment.

Dr. Christine Roman-LantzyDr. Christine Roman-Lantzy has identified ten visual and behavioral characteristics that can be observed in a child with a cortical visual impairment.  Staff may need training to understand these characteristics. Additionally, Christopher Russell created this great fact sheet as a resource for families and professionals.  However, it is important to remember each of these characteristics impact every learner uniquely.  

Even team members who know what CVI is, still need additional training to fully understand how each of the characteristics uniquely impact your learner’s functional vision.  Creating some cheat sheets may help new team members to recall the characteristics and their impact.  Go through each of the characteristics and describe how it can negatively and positively impact the child.  Here is a template that might help.

IV. We are living in uncertain times.  New data is being shared about COVID-19.  Decisions about where your child will attend the 2021-22 school year is difficult for many parents, but is compounded when you have a child with complicated medical needs.  Families should work closely with the child’s medical professionals and school staff throughout their decision-making process regarding return to school options, whether in person, blended, or remote.  

Would the family like some therapists to come into the home?  Will the school allow therapists to enter the home?  I am a planner and visual learner.  For me, I would need to create a chart and compare what both environments would look like; therapies, accessibility, medical risks, social risks, etc.

Once you’ve made your decision, be sure to understand the protocol for your school’s personal protective equipment (PPE).  Your child may need to practice wearing a mask or other PPE.  Additionally, since faces are already difficult for children with CVI, masks on a person’s face will make this even more difficult.  

Difficulty recognizing faces can have a negative impact on social interactions with peers, if the learner with CVI isn’t supported.  Incorporate how your child will recognize familiar peers and staff if they are wearing PPE.  You could take a picture of a few familiar classmates/staff with and without their masks.  This could become a fun matching game for the whole class.  Show a picture of a classmate with their mask on.  

Give some other information about this student as a getting to know you game.  If your learner is not ready for two dimensional images, the clues could be recorded by the peer themselves ahead of time, so that the learner with CVI can begin matching the voice with their peer.  

After the clues are given, have the class try to match which child matches the image and description.  I would give my learner access to the images before and after the experience, if it would be helpful.

V. Now that you know where your child will be attending school, consider how they will get around this physical space.  

Knowledge from the learner’s physical therapist can provide input regarding their gross motor skills, the teacher for the visually impaired provides their functional vision, and the orientation and mobility specialist provides safety of travel input.  If your team is moving to an interdisciplinary model similar to that supported by CViConnect, all of your teammates have access and are familiar with these various levels and are ready to meet the learner’s mobility needs.

The natural instinct for most professionals, when CVI is first taught, is to make everything the child’s favorite color, or attach lights to everything.  Unfortunately, if we do this, we’ve made all these points meaningless.  This is another great example of the importance of a more interdisciplinary approach and understanding the needs of your learner outside your sole area of expertise.

When we come from a whole child approach, the team is able to better understand the need to carefully select the information that your learner needs visually, and highlight these landmarks.  Meaning, not every teacher’s door needs red tape around their door frame.  Additionally, these well meaning modifications won’t mean anything unless they are explicitly taught to the learner. 

Reach out to the school to see if the child can get into the building before school starts to begin practicing their routes.  Further, maybe the learner’s orientation and mobility specialist can meet you there and begin some of their route training before the school year.  (*Note, some district contracts may not allow this, but it is worth asking to see if anyone from the team could provide additional support).  

This early visit will allow your learner to see the building before other students are there.  While you are there, take pictures and/or video of various locations your learner will need to be familiar with.  Use these images and videos at home to review the routes you practiced.  Remember, it is OKAY to teach other methods to learn routes, for example, relying on tactile input from a white cane or sounds you might hear. 

If your child is staying home this school year, you can still work on routes within your home that your child needs support with.  If your child is very comfortable moving around their home as independently as possible, begin working on routes in your neighborhood.  Again, consulting with your learner’s orientation and mobility specialist may provide you with some guidance and valuable routes to practice.

VI. Show off your new school supplies.  Parents might find themselves buying new backpacks, lunch boxes, clothes etc. Your child may even help pick out their new materials.  For your child with CVI, you may need to use this time to expose them to the new ‘back to school’ purchases you made.  What does their new backpack or lunch box look like?  Do you need to add something to their materials so it stands out easily? 

Just as you may add something to your suitcase to help make your luggage stand out at baggage claim in an airport, teams can add something to the child’s bag that is unique and easy to spot among other backpacks. In the past, I have encouraged families to tie a mylar ribbon around the handles of their student’s materials or add a fabric swatch.  Whatever you choose, make sure you spend time teaching this to the learner with CVI in order for it to be effective.  

VII. Create a space that meets the learner’s needs.  A distraction free, visually accessible,TVI using the CViConnect PRO app to teach a student independent work space looks different for every learner.  Regardless if they are attending school virtually or with in person instruction, it may be valuable for both in-school and at-home learners.  You may even find your learner has a variety of learning spaces throughout their home and school settings.  These workspaces will also look different depending on the task and environment placed upon the learner.  

When creating this space, think through CVI Characteristics.  How can they help the learner and how could they potentially distract the learner.  Every work space needs a good source of light to ensure materials are illuminated, but the angle of the light or light from a window could become a distraction.  Noise cancelling headphones have been used by some learners to help reduce the distracting sounds, but a system is needed to ensure the student still has access to the staff’s verbal cues/directions.  Does your learner need a space with reduced visual complexity?  Some have used trifold boards or fabric to help cover unnecessary information, but if this blocks their view of notes on the board or other resources, ensure your learner has another way to access these with electronic or desk copies.

VIII. This one seems obvious, but often is where teams get stuck.  Agree on a system early on for how the learner will  access their work?  It is unlikely that your schedule will be rigid such that the learner uses their vision during ‘Morning Meeting’ from 9:00 AM- 9:30 AM and tactile access for science from 9:30 AM- 10:15 AM.  Instead, teams will need to be flexible.  Give examples of the types of tasks the learner can complete visually and with what environmental expectations.  

Dr. Roman-Lantzy and Matt Teitjen released the “Sensory Balance” text in 2020.  This is a great tool if you are unsure how to complete a functional media assessment of the 10 visual and behavioral characteristics defining Cortical Visual Impairment.  A teacher for the visually impaired likely has a few ideas of how materials can be made accessible via tactile or auditory input.  Be prepared to utilize these when vision has become too much or is no longer appropriate.

This question also comes up when discussing the best input for our learners.  How much do they understand receptively?  Hopefully, your team is working on a variety of ways for your learner’s wants and needs to be expressed and interpreted by the communication partner.  Regardless of their expressive language modality, when unsure of your learners potential, assume they are capable.  One thing I was fortunate to learn early in my career was to never limit a child’s potential.  See the child, see their future, see their potential.  

IX. This leads me to another really important tip for teams.  Be aware of what your learner’s visual fatigue looks like.  Watch for these cues from the learner and respect their limitations.  Find a way for them to request a break, and select a few activities that are a good fit for your learner to engage in during a visual break.  These are typically things that are low visually demanding tasks in a minimally complex environment according to Matt Teitjen’s ‘What’s the Complexity Framework’.

Include your learner in these conversations as much as possible.  Ask something like ‘what will we want to do if your eyes begin to feel tired?’  You might be surprised to hear their answer and what they prefer to do during this necessary visual break.  Let them know how to communicate that they need a visual break and that needing a break is okay.  We all need to step away at times.  Working adults might text a loved one during a break, go for a walk on our lunch, or read a book they enjoy.  Breaks look different for everyone.

Often my learners with CVI had very large IEP teams, meaning the child was with a large number of staff throughout their day.  Communicate with each other to ensure you aren’t pushing the child beyond their limits.  If you are using the CViConnect PRO system, the messages platform is a great place to make note of these observations.  Teams can quickly glance at notes from the day prior when working with the child.

X. Naturally, after determining your student’s learning media, your team needs to have a plan for how the learner will get their learning materials.  This is where teamwork and communication really comes into action.  If the team decided that learning to read will be visual, who makes these materials accessible?  Can the learner access this technology independently or does a CVI moderator.  Unfortunately, we do not have an answer for this, as each IEP team operates uniquely for the individual child’s needs.   Instead, I can give you a few questions for you and the rest of the team to consider:

  • Who is responsible for creating learning materials in the preferred learning modality?  Is each provider creating their own content or is a member assigned to this responsibility?
  • If one member is creating content for other service providers, how will materials that need to be accommodated be shared with the individual who needs to modify them? Do you have a timeline in place for when lesson plan materials will be provided ahead of time?  
  • Does the team have access to existing content that meets the individual’s needs? 
  • Are there any additional supports or instructions needed, once the learner has the accessible materials?  Do they need instruction on salient features of visual targets?  Can they independently utilize the technology to access their materials?
  • How will the learner communicate their answer?  The team will need to know how the child communicates expressively. 

Your IEP Toolbox. Use Tools When Needed

Your IEP team may not benefit from all of these ideas.  Also, if you have never done any of these, do not feel you need to start with all of them this year.  Pick a few that might work best for your learner to start.  Maybe you can come back and revisit a couple later in the year, or build them into next year’s expectations.  Doing what’s best for kids does not always mean they need top of the line devices, but they deserve the best of you.  Do what you can to best serve these individuals and know you’ve done what you can.  

If you are  still reading this blog, it tells me you care deeply about your learners and have their best interest in your heart.  Good job team.  When the educational team comes together and considers the learner’s needs before they even enter the building, we have a better chance this child can start off on the right foot.

Believe it or not, but the best big changes happen when you start small and make incremental changes to our behaviors and routines.  

Have questions, or want to learn how CVIConnect can be a solution for your child or student. Contact us at info@cviconnect.co.

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