A Parents Experience of Raising a Child with a Visual Impairment

Girl riding bike with mother
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Being visually impaired is certainly a challenge, no matter how old we might be.

Take heart! Meet Hanna, a happy 7 year old with a rare eye condition  and her mom, Jennifer, who are taking life in their stride. With love at the core of family life and determination as their guide, they meet the daily challenges of low vision with many strategies but above all, the entire family feel blessed to be learning so much about life with a disability.

 

In this interview, Jennifer shares her thoughts on what it has been like to raise Hanna, her visually impaired daughter, one of 4 ‘little rays of sunshine’ in the O’Hara household. Jennifer’s desire, is to give hope to any other parent in a similar situation by sharing Hanna’s inspiring story.

Discovering the News

M: As Hanna seemed to be born a healthy little girl, what made you suspect there was anything ‘wrong’ with her eyes?

J: It was probably the day after Hanna was born that we noticed her eyes were jerking around a lot. We asked the nurses and we were told to give her time, since these muscles may not have been fully developed yet, so we didn’t start to worry right away.

But when Hanna was 10 weeks old, she hadn’t gained any more control over her eyes so we decided to take her to a pediatric optometrist. We were seen by two different doctors that day and the words “masses” and “syndrome” were used.

PHPV was the only diagnosis thrown around, with her symptoms being very similar to retinopathy of pre-maturity.

Later that week, she was seen at Sick Kids hospital in Toronto and her new possible diagnosis became Familial Exudative Vitreoretinopathy (FEVR).

M: I believe things got worse – what happened next?

J: While Hannah was being examined at SickKids, they found other health issues. We were told she had Microcephaly  - multiple holes in her heart, and that she possibly had a metabolic disorder, along with other potential horrible diseases. She was seen in Genetics to start to rule things out and try to find a diagnosis.

M: Can you share how you and your family felt at this difficult time of Hanna’s health issues and how you managed to keep optimistic for each other?

J: Hanna’s vision became the least of our worries at this point. It was extremely difficult to watch her have to have so many tests done. Blood and urine tests, X-Rays, and MRIs were overwhelming.

My husband and I both have amazing families who were our support system along the way, and Hanna’s big sister, Gracie played a big part in that as well. She was not two years old yet, so kept us busy and was a great little distraction!

Hanna continued to progress in everything she did as well, proving doctors wrong along the way, which kept us very optimistic.

Overcoming the Challenges

M: What were some of the early challenges you and Hanna faced in working out the best ways to aid her daily progress?

J: I’m still learning this one! The most memorable challenge for me is when Hanna didn’t like to touch things. She was extremely sensitive to certain textures and it was a huge challenge getting her to use her hands for anything.

This was especially difficult because her hands would play such an important role in her understanding of so many things with her very limited vision.

M: How is life now for Hanna, what is she learning to do that you never imagined she would be doing?      

J: I think life for Hanna is pretty darn amazing. Because Genetics have been involved since she was an infant, we didn’t know what to expect as they were never very optimistic. She always has, and still is proving them wrong every day, and that makes her our little hero!

Hanna is learning braille and is doing well in school.  I think her biggest achievement that I wasn’t sure she’d ever be able to do is ride her bike, but she enjoys bike rides with all of us as a family and can even ride independently (with a sighted helper running alongside).

She also loves swimming, swinging and playing outside in general.

Family Life Today

M: How do you manage to incorporate the needs of 3 sighted children along with being there to help Hanna too?

J: We try not to treat Hanna differently than her siblings, but she obviously needs extra help in some areas. All four kids help each-other in different ways with different things, and they all get along great.

This makes my job easier and together we all make it work as a family. Sometimes we even forget Hanna is blind because so much of what we do has been adapted slightly for her, and has just become second nature for all of us.

She helps her younger siblings with some things too, which has been so great for her confidence as well!

M: What advice would you give to a parent who is faced with raising a child with a visual impairment?

J: To not expect any less than you would from a sighted child. Treat them how you would any other child and they will move mountains.

Our experience is that it’s a very accessible world, and there is no excuse for your child with a visual impairment to not have the same – if not more - opportunities in life as everyone else. 

M: Many thanks Jennifer, we wish you and Hanna continued success!

Jennifer also recommends Wonderbaby.org for parents wanting more information for their similar journey. You can read Hanna’s full story at My Little Rays of Sunshine

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