By Amber Bobnar, Wonderbaby.org

When my son, Ivan, was born we lived in Hawai’i. Ivan was born blind and with multiple syndromes resulting in the need for intensive Early Intervention therapies.

Our EI team had experience working with kids who had low muscle tone or kids who had speech delays, but blindness was new to them. As we heard over and over again, “Visual impairment in a low incidence disability.” In other words, blindness wasn’t something they had ever had to deal with before.

Our therapists often told us that they were “learning along with us” or that they were happy to be having this “new experience” (as if we should be proud to be lending them a new line to their resume), but in the end we became frustrated with their lack ofknowledge and we decided to move.

Our move to Massachusetts and involvement with the Perkins School for the Blind was a stark contrast to our experiences in Hawai’i. Most dramatic was our new Teacher of the Visually Impaired who came to our house once a week! But I also noticed that our new Occupational Therapist took a very different approach to Ivan than our old one had.

It made me think about what an OT needs to know before working with a child who is blind and what a perfect OT would look like to a family with a blind child.

I asked some other moms for their feedback as well and we came up with our own list. As mothers of blind children, we want an OT who…
Focuses on realistic and attainable goals.
This was by far the most important point to all of the mothers I talked to. Our first OT in Hawai’i looked at a chart, figured out what a child Ivan’s age should be doing and tried to get him to do it; our second OT in Massachusetts recognized that Ivan needed to work on certain skills first (like crossing midline) before he could work on more complicated goals (like holding a box in one hand while removing toys with the other). Focusing on the complicated goals is really just a waste of time if we don’t work on the foundational skills first – and, more than that, it can be really frustrating for a child to be asked to do something entirely out of their skill level. As one mom said, “Don’t waste a year on a goal my child can’t reach. Figure out why he can’t reach that goal and address that instead.”

Takes their time with my child
This is another important point, especially when working with children who are blind. Kids with visual impairments will take longer to process what’s going on around them, what’s expected of them and what the goals of a session are. It can take them a while just to realize who is in the room with them or what toy is being offered to them. Take your time and don’t rush through your session.

Can asses my child’s sensory awareness.
One mom told me that she often hears her son’s OT say that her son “just didn’t seem interested today.” When a child is either over or under stimulated it may seem that they just “aren’t into it” but maybe they just need help getting to a point where they can focus. “It’s an easy out,” my friend says. “An OT should be able to determine my son’s arousal level and use sensory strategies to get him to a point where he can be interested.”
Understands sensory motor integration.
When Ivan was in preschool we worked with his OT to develop a sensory motor plan that would help him focus during other sessions. Before his Compensatory Skills session, for example, his TVI would have him crawl on the floor so that he would get more feedback into his hands and arms. They would also brush his arms and hands and stretch his arms. This made a huge difference when it was time for him to read a book, feel the tactile images and follow a line of braille. As one mom said to me, “Brushing, weighted vests, stretching: All of these things can really help our kids focus if they’re used correctly.”

Incorporates goals into everyday settings.
Working on a goal for no reason can be difficult for any child, but kids who are visually impaired need that real life tie more than others. How is what you are doing applicable to real world situations? One mom pointed out that “when we work on meaningful goals that we can apply in day-to-day situations we’re much more successful. There are only so many things we can work on at once, so we might as well focus on the things that make sense to our daughter.”

About Amber Bobnar and Wonderbaby.org
Amber is mom to Ivan Kapi’i Bobnar,  a delightful boy with LCA, a rare retinal disorder, When Ivan was diagnosed, Amber and her family were desperately sought for support and answers.  At the time she thought it might be a good idea to gather everything she found into one place – and Wonderbaby.org was born!

In 2011 WonderBaby teamed up with Perkins School for the Blind in order to provide more features and support for families through the internet.  The original intent for the site was just to link to resources Amber found on the web, but before I knew it she was writing more and more about Ivan and all he had to teach us! She soon learned that other parents were experiencing this too… we all know that our children are full of wonder and they amaze us every day.  As we focus on teaching our children all they need to learn in order to be as independent as possible we are often surprised to find out that we are learning so much from them!
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