Inspirational Member of the VI Community of the Month

This months feature is an interview with Amber Bobnar, creator of the almighty and all informative wonderbaby.org and most importantly mummy to Ivan.  This interview is very close to my heart, Amber is my hero and was pivotal in helping me launch throughscarlettseyes.com, she offered advice on every aspect of her website and her involvement certainly has helped me.  So thank you to Amber for taking part in this interview, its full of great tips, touching stories and tales about Ivan’s success.

1. Hi Amber, thank you for agreeing to take part, can you first start by introducing us to you and your family…. age, location, family members etc.

There are three of us: Me, Ivan and Ivan’s dad, Esoos. Ivan just turned 9 in June. We live in Watertown Massachusetts within walking distance of Perkins School for the Blind, which is very convenient for all of us because Ivan attends the Lower School at Perkins and both Esoos and I work there. They also have wonderful accessible playgrounds and water parks which we love in the summer!

2. Can you tell me some more information about Ivan

DSCN0280I always find this question difficult to answer because my first impulse is to tell you all about Ivan’s disabilities and diagnoses. I think that’s often what people are asking about when they want to “know” about Ivan, but at the same time I don’t really think of him this way. Ivan is fun-loving and happy. He’s super social and loves to be around people or in the middle of a crowd. His idea of a wonderful day would be to hang out at a large outdoor music festival full of sounds and people and lots of good food! Ivan hates to stay at home and “relax.” He wants to get out and do things!

But I also think that explaining Ivan’s disabilities is important to understanding who he is and what challenges he faces. Ivan is non-verbal and non-ambulatory. He is very much dependent on others for just about all of his daily living skills. He is diagnosed with Leber’s Congenital Amuarosis (LCA), a retinal disorder, and is completely blind without light perception. He also has Joubert Syndrome, a neurological condition that affects his balance and muscle tone. And he’s also diagnosed with Landau-Kleffner Syndrome (LKS), a seizure disorder that caused him to lose his language when he was about 3 years old.

3. You are the creator of WonderBaby.org, a highly acclaimed parent information and resource sharing network, a great source of comfort for me and many other families out there who are raising VI children- can you please tell us about your journey to make WonderBaby.org the great website it is today

The simple story behind WonderBaby.org is that when Ivan was born in 2005 and I was looking for information about raising a blind baby online… I couldn’t find any.

We lived in a very rural part of a very rural state at the time and we didn’t have access to many services, so I relied on my internet connection to find resources, but I wasn’t finding what I was looking for. I had some web background so I decided to create the site I wished existed. I wrote about my experiences with Ivan or about information I read in books. Eventually other families found it and loved the concept so they contributed their ideas as well and the site just grew and grew. When you build something that fills a need it becomes bigger and more expansive on its own. It’s been amazing to watch this little site become the community it is today.

4. What does being the creator of WonderBaby.org and a mummy to Ivan mean to you?

WonderBaby.org is very much a labor of love… and I’m humbled that I am able to actually work on this site as an actual job. I get to do what I love and help people at the same time. It’s the best feeling in the world. It is also a lot of work, though, so a big part of my commitment to WonderBaby.org means late nights and working too hard.

56109916_cc831e32e3_bAnd when I think about it, a lot of that is true for Ivan too! Because I work on a website, my hours are super flexible, so I still get to be Ivan’s primary caregiver too. And of course that’s much more than just a labor of love! I adore Ivan and have so much fun with him (he’s a very silly guy). But he’s also a lot of work. He can’t get around on his own or entertain himself so he needs constant assistance and interaction. He does sleep well (thank goodness), but I often work on the website after he goes to bed.

I think mostly I’m just tired. 🙂

5. I bet you can list hundreds of days but what was your proudest moment with a. WonderBaby b. Ivan.

My proudest moments with WonderBaby always involve the little emails I get from parents, usually moms, who have discovered the site and found it helpful. One mother told me that WonderBaby had helped her to get over the depression she’d been feeling since the day her baby had been diagnosed with ONH. That was a huge day for me. I still tear up thinking about it.

 

For Ivan… he’s amazing so everything he does makes me proud. I’m proudest when he does anything on his own, from holding his own cup to playing with a toy on his own. They are rare moments, but I cherish them.

And he poops on the potty. How awesome is that?

6. If you had one piece of advise to give a parents/ carer of a newly diagnosed parent of a VI child what would it be?

Don’t second guess yourself. You’re probably thinking that you have no idea what you are doing. You may not have had any experience with blindness in your entire life and the whole thing just seems so foreign and overwhelming. We all need help and of course you need to look to doctors and professionals to help you with services and development – but you really do know your baby better than anyone and you really are doing what is right. Follow your gut – you know best.

7. You help people everyday in your job, is there any specific story or anecdote that you can recall that really sticks in your mind about a way in which you have helped someone?

When Ivan was a baby he didn’t sleep. At all. We would be up for hours with him every night rocking him and singing to him to try to get him to sleep. It was beyond exhausting. When Ivan was 2 we decided to take him to the sleep clinic at Boston Children’s and we met with Dr Ferber. He guided us through the process of getting Ivan to sleep through the night on his own… and that made a HUGE difference in our lives.

So of course I wrote all about it on WonderBaby: http://www.wonderbaby.org/articles/baby-sleep-plan

A few months after posting that article a father wrote to me who was going through the exact same issue with his toddler who was also totally blind. I helped him through the whole process and gave him lots and lots of encouragement. After about 2 weeks his son was sleeping through the night and it was just so rewarding to have passed on the gift of sleep to another family!

8. If there is one thing you could have done differently in your approach to raising Ivan what would it be and why?

I think I would have slowed down and enjoyed Ivan more. Especially when he was a baby I was always so worried about his future and his development. I think I missed a lot of baby time when I should have just been playing with him and snuggling him.

Fortunately for me my big 9 year old boy still loves to snuggle!

9. What’s next for Ivan and what’s next for WonderBaby!?

I’m not sure what the limits are for Ivan. I always say we are working to help Ivan become the best Ivan he can be. He is always growing and developing and surprising us, so I’m sure there is much to come next for him. When I look back 3 or 4 years and see what he can do now, I’m amazed. Who knows where he will be 3 or 4 years from now!

wonderbabylogoAs for WonderBaby, I have lots of plans for the site! I want to do more to help families in the process of adopting a child with a visual impairment. I also want to help families advocate for the services or equipment they need. It’s hard to find a voice sometimes and I want to provide a platform for families who need help signing petitions or raising money.

We are translating the site into Arabic right now and I would like to add more languages over time. I want to do more BIG giveaways for special needs equipment that families can’t afford on their own. And I’d love to create a WonderBaby app.

I’m sure there’s more, but those are my big goals for now!

10. Is there anything else you would like to add that we haven’t already covered in this interview (use this as a chance to promote any causes, websites, information include as many links as you like)

family-in-2006I think I’d just like to add that I am always looking for new ideas and new voices. If there’s anyone out there who wants to share their story or wants to let others know about something they love, I’d be happy to post about it!

I’ve expanded the website onto social media so I’m always available through Facebook, Twitter or Pinterest. Those are my personal favorite social media sites so they are the ones I focus on, but if anyone wants to tell me about other ways to connect I’m happy to hear about that too!

I’m always looking for suggestions and want to make sure WonderBaby is providing the information families are looking for.

Thank you in advance for agreeing to take part Amber, you are wonderful in so many ways and I personally thank you for the success I have had with throughscarlettseyes.com so it’s a very deserving nomination! 

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