Just diagnosed: your first week

What CVI means, in two sentences

CVI (cerebral, or cortical, visual impairment) is a vision problem that starts in the brain, not the eyes. Your child’s eyes can be healthy, and their brain still has trouble turning what the eyes send into a picture that makes sense.

It’s different for every kid. It lasts for life, and support helps a child use the vision they have. Many kids go years without a diagnosis, because eye exams can look normal.

This week: five things

1. Ask for help, in writing.

• Under 3: call your state’s early intervention program (free services for babies and toddlers). You don’t need a doctor’s referral. The CDC keeps a contact list by state.
• 3 or older: email your school district’s special education office. Your local public school can point you there, even if your child doesn’t go there yet.

Send this, then follow up any phone call with an email:

“My child, [name], age [age], was diagnosed with cerebral/cortical visual impairment (CVI) on [date]. I’m asking for a full evaluation, including a functional vision assessment by a teacher of the visually impaired. Please reply in writing with the next steps and who I should talk to.”

Writing gives you a dated record. Keep every reply.

2. Ask for a teacher of the visually impaired (TVI). A TVI is a teacher trained in vision loss. For most kids with CVI, they’re the most important person on the team. Say: “Will a TVI be part of the evaluation? Who is it, and when will they see my child?” If someone says no, ask for the reason in writing.

3. Start a notes list. On your phone, one line at a time. What happened, where, what time, how tired. “Found her cup on the plain tray. Lost it on the patterned tablecloth. 5 pm, tired.” These notes will help at every appointment and meeting. There’s a printable log on what to bring to the doctor.

4. Change one space at home. Not the whole house. One spot. Put a plain towel or tray on the table, with one toy or one cup on it. Keep it in the same place every day. More ideas: CVI at home.

5. Watch the film. It’s about five minutes. Watch it yourself first, then send it to the people who’ll ask you questions.

What can wait

• Reading everything online tonight. A lot of it is scary, out of date or selling something.
• Buying special toys, apps or programs. Ask the TVI first.
• Anything sold as “vision therapy”. In the US that usually means eye exercises, and pediatric eye doctors say behavioral vision therapy hasn’t been proven to work. Kids with CVI are usually helped by a TVI and an orientation and mobility (O&M) specialist, who teaches safe moving around.
• Knowing what your child will be able to do. Nobody can tell you that this week.
• Learning every term. The glossary is there when you need it.

Who to call

• Early intervention (under 3) or your school district’s special education office (3 and up).
• Your child’s eye doctor. Say: “Can you send me a letter that states the CVI diagnosis? I need it for early intervention and school.”
• Your state’s Parent Training and Information Center. Every state has one. They help families with special education for free. Find yours.
• Other CVI parents. See find help.

Next: when the school replies, read IEP basics.