Moms on Monday #23 / Jamia from CA

MOMS ON MONDAY

Your first name:  Jamia

Your child’s first name and age:  Jaxsen, 3 years old at the end of May

State:  California

Jaxsen is very fast paced.

Jaxsen
Jaxsen, age almost 3

 

If you ask him to sing he will sing the same note for five seconds then he will wait for everyone to clap and tell him how great he sounds.

 

 

He loves music. I mean he loves music so much; it makes him so happy.

 

 

As a family we listen to music together. He likes going on walks and being outside.  He likes the rain and the sun on his skin.

 

 

 

 

 

When did you first learn about CVI? 

When I first saw the ophthalmologist when my son was 6 months old.  The doctor mentioned it after my husband did some research.  When I asked the doctor about it, he told me that Jaxsen could not be diagnosed until he was 12 months old.

How were you given the diagnosis?

Well, we researched it.  Then we knew everything matched up.  And, when we were in the NICU, the neurologist told us the only part of his brain that had suffered damage was the occipital lobe.  So, they told us from that day his vision would be affected.  When we were given the diagnosis at his 12 month appointment, it was kind of like “He has CVI.  There’s nothing you can do.”

Does Jaxsen have other diagnoses?

He has no other diagnoses.

How was his Early Intervention experience with regard to CVI?  (Were your providers knowledgeable?  Were they open to learning?)

When we started receiving early intervention, it wasn’t based on his visual impairment.  In January 2017 I went to the neurologist.  She asked me if we were receiving services like Braille.  I said no.  That day I walked out of there and called our Inland Regional Center to ask why he wasn’t getting vision services.  She told me she didn’t know he had a “visual issue.”  I was extremely mad and upset because she was supposed to be helping him and our family.  Only our Braille teacher was knowledgeable about CVI.  Then, because of the county I live in, we could receive services from Blind Support Services.  It got to the point that the head person left and the new person who came in didn’t know anything about CVI.  The Braille teacher was the only person who knew about CVI but we only got to see her one or two times a month.

How is CVI being addressed in your child’s school setting? 

We haven’t started school yet but we will this year.  He will be getting an Individualized Education Plan (IEP) by his 3rd birthday.  He will get Orientation and Mobility and a TVI.

What do you know now that you wish you had known at the beginning of your journey as Jaxsen’s mom? 

How I could help him learn to see because I still don’t know.

I wish I had a better support system.

I haven’t found parents that have kids like my son.

I don’t know what to expect.

I’m scared because he was my first child and it was the hardest thing I’ve ever done.

What would you tell a mother whose child has just been identified as having CVI? 

Seek help.  You are your child’s biggest advocate.  People will tell you there’s nothing you can do but there’s always something you can do.  Never stop fighting.

What would you like for people who have never heard of CVI to know?

Seek help.  Search the web and look for help.

Hopes and dreams?  Anything else you’d like to add?

I hope he will be able to learn to see.  He is the best thing that has ever happened.  I hope he’s able to find love and to have children.  That’s the hardest part to think about for me.

 

Thank you Jamia for sharing your story about your beautiful boy with other CVI families!  Thank you for putting California on the map of states we have collected stories from!  

 

 

Published by

CVI Momifesto

CVIMomifesto is a blog dedicated to parent advocacy and community for families of children with Cortical Visual Impairment.

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