Amber Bobnar is mom to wonderful little Ivan and also runs WonderBaby.org, a site for parents of blind and multiply-disabled children. Today and tomorrow, she’ll talk about how parents can assist their kids with special needs experience the world.

Let’s Go! Getting Out of the House & Experiencing the World, Part 1

Ivan is my adorable and super-affectionate six-year-old son. He is diagnosed with Joubert Syndrome, Leber’s Congenital Amaurosis and Landau-Kleffner Syndrome. Yes, those are a lot of big words to label a little boy with. What it boils down to is that Ivan is totally blind, non-verbal and non-ambulatory. He has a language processing disorder. On good days he can understand a lot of what’s said to him, but on bad days he doesn’t understand much at all. He has very low tone and has a hard time controlling his muscles.

But even with his cognitive delays and many other challenges Ivan absolutely thrives on social connections and contact. He’s always the last one to leave the party and he never wants the concert to end. He hates staying at home. He wants to get out into the world… and we have to prepare the world for him!

Since taking Ivan out is inevitable, his father, Esoos, and I have come up with ways to help Ivan maneuver through our community. It’s not always easy and it generally takes the two of us to get Ivan through a successful outing (I might talk to the adults in the room and get things set for Ivan while my husband keeps Ivan entertained, for example), but the end result of a happy Ivan is always worth it. Here are some things we keep in mind to make that happen.

Finding a Passion

Ivan may not like staying home but he can also be very particular about what he does when we go out. He’s not going to put up with just any outing, it needs to be spectacular! Fortunately for us, Ivan is easily impressed as long as we are doing things that match his passions. So, for the record, Ivan loves:

• live music
• swimming
• trucks
• animals
• food

We’ve found that when Ivan is doing something he feels passionate about he is more likely to have one of those “good days” that result in better understanding and cognitive function for him. This also means that he is in a better position to learn and interact. Before you pack up your car for an outing with your child, make sure it’ll be something they’ll really connect with.

Live and Learn

Of course you can’t know what your child’s passionate about until you get out there and try things! We’ve been all over, from live concerts to children’s film festivals, puppet shows to fruit picking and we’ve learned what Ivan loves and what he doesn’t. Alright, some things he down right hates.

We’ve learned that Ivan loves the nuances of live performances and connecting with real people and real instruments, but hates the flatness of recordings or films. For example, if a group will be dancing to a recorded tape, Ivan isn’t happy. What is he getting out of it if he can’t see the dancing? And the recorded music isn’t any different than our CDs at home, right?

Ivan also likes to be able to touch things and get his hands involved. Puppet shows are boring because the most animated part of the show, the puppets, are off limits to him. Strawberry picking at a local farm, though, is enchanting. Not only does he get to feel the strawberry plants, he also gets to eat fresh strawberries he’s picked himself!

If you think about it, Ivan’s likes and dislikes make a lot of sense based on his abilities. He enjoys things that he is most able to be part of and understand.

How Do You Get Out of the House with Your Child?

Amber will be back tomorrow to discuss more strategies they employ to make outings with Ivan enjoyable for him. Until then, please share tips you’ve discovered when taking your child out and about. The more ideas, the better!

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.