Owen Baker is a handsome and happy little boy! In this blog post, his Dad, Matthew shares some thoughts about his son, in hopes of connecting with other families who might have children with a similar diagnosis. If you know someone who has Agenesis of the Corpus Callosum, or a similar brain disorder, this family would love to hear from you!
Not long ago, I was tasked with writing a little piece about my son as a way of introducing him and his disorder to people who might not be familiar with his diagnosis.
Owen has a rare neurological disorder called Agenesis of the Corpus Callosum (ACC). He was born without a corpus callosum, which is the small bundle of nerves that connects the right and left sides of the brain. The vast majority of the human population have been born with it, but to the few without it, life can be a real challenge.
I've been trying to find a way to explain ACC to people who don't quite get it, and this is what I've come up with:
Imagine being in a room with someone who doesn't speak the same language as you. For the sake of the argument, let's say they are speaking French, and you speak English. Now, imagine that a translator is also in the room, and their job is to help you and the other person complete some necessary tasks. It doesn't matter what the goals are, the point is that the translator is necessary in helping you communicate with each other. The translator is the corpus callosum.
Now imagine the same situation, this time without a translator. You and the French-speaking person are asked to do the same things as before, but you have no way to communicate with each other. You know stuff has to get done, but you have no idea how you're going to do it successfully. Eventually, through trial and error, you and your friend find a way to communicate that might seem strange to some people. What works in one situation might not work in another because you are simply not speaking the same language and your reliance on unorthodox ways of communication is bound to cause confusion and oftentimes delay.
Owen is one of those people without a translator/corpus callosum. My fiancé, Annie and I knew it from birth, but we were almost totally in the dark about what it meant. As people tend to do these days, we Googled the information but all we came up with were worst-case scenarios. It was a scary time, but we still held on to some hope that our boy would be fine. We didn't get any real peace of mind until last year (2014) when we traveled to Boston, MA to attend the bi-annual conference put off by the National Organization for Disorders of the Corpus Callosum. To be in a room with five hundred other people who just "got it" was a huge weight off our chests.
Another goal of mine in writing about my son is not just to inform those who don't know about ACC, but to connect with parents of children with any sort of disorder of the corpus callosum - ie. partial ACC, hypoplasia, and so on. Please don't hesitate to contact us and get some dialogue going. The lack of available information is astounding, and I firmly believe that there is strength in numbers. The more people are aware of ACC, the more there will be peace of mind for families like ours.
Owen has grown into such a sweet, caring, thoughtful, polite, and hilarious little child. He is now four years old. As I mentioned, his lack of corpus callosum has hindered his progress in some areas that many people take for granted. He uses orthotics (braces for his feet) to assist in walking, he uses a walker from time to time, and he's been going to weekly physiotherapy, occupational therapy, and music therapy appointments for nearly two years now. His hard work and perseverance has paid off, as just this month, Owen has finally started walking on his own! He is now capable of carrying on a conversation with his Mom and I. He loves the Ninja Turtles, Thomas and Friends, and carries a little stuffed dog named Doggy Doo around with him almost everywhere he goes.
Owen's disorder has taught Annie and I so much about a world we didn't even know existed. A few people have asked me over the last four years if I would change anything about it; Did I ever wish Owen was "normal"? The answer is a resounding NO. This is our normal now. I don't know how to live life any other way, and I wouldn't want to live life any other way. Owen is a truly magical being, and everyone who has ever met him and has gotten to know him would agree.
Matthew, thank you for sharing about your son, and for that perfect explanation of Agenesis of the Corpus Callosum. It really helps to understand how Owen must struggle every day, and it certainly shows how amazing he is! The brain is a wonderful thing, and works in mysterious ways. Owen will continue to surprise you, as he learns to figure things out in his own way. Keep offering him every opportunity to learn and grow, as you have been doing, and he will succeed. I have seen Owen playing baseball, climbing in the playground and hiking some serious trails. There is nothing that he cannot do. You guys are doing an incredible job, raising a very special little boy. I wish you all the best, and hope that you are able to make contact with some other parents who have a child with a similar diagnosis.
To get in touch with this family, you can comment here on this post, or email Matthew at firstname.lastname@example.org
Matthew, I've known you now for, amazingly, 21 years my friend. The summer of '94, the summer when a lot of us meet, and we allnknow who we are, and became lifetime friends. As teenagers, we were all carefree, rambuctious and, as some of our superiors put it, rebels. Which I'm sure, for the most part, non of us will deny any of this for we were young, and enjoyed every moment of our lives. As we've all gotten older, we've all went our seperate ways, some married and living in different countries, some of us still enjoying our lives to greatest extent, and, some of us, as much as it hurts to say, haven't. Myself Matt, my buddy, have moved on and have a family that I love and cherrish, and would die for in an instant if it meant saving them. Thats the one part of being a parent that some do not understand. Being a parent comes with responsibilities that, when we were all young and careless, couldn't fathom, didn't care about honestly but, we now realize, and would never change. I believe that things happen in life for a reason. Myself, our kids are bright, intelligent and remarkable kids, just as Owen is. The difference tho, I was chosen for to be the father of our children, to be able to teach show my son how Daddy can rip apart a car engine and rebuild it. How I can can take a rusted out junker and weild in new metal, fix the denta and paint it up and make it look"sick"as he says. You Matt, we all know that you were chosen for Owen. To teach him what he needs to know, to show him the patience that you have, to be there when he gets frustrated to be his rock, to be his mentorbut most of all, to be "His" father. The one who can get him through this and do whatever he needs "You" to do....what no one else can. Keep being Owen's father Matt. Keep being his idol. Enjoy Owen to the fullest my friend, and he'll keep enjoying you. Take care Matt, and may God blees you and AnnieReplyDelete
What a beautiful family! Thank you for sharing your son with us, and here's hoping this connects you to other similar families. As a special needs parent, I resonate with your last bit "A few people have asked me over the last four years if I would change anything about it; Did I ever wish Owen was "normal"? The answer is a resounding NO. This is our normal now." Amen! I would do it all again and change nothing about my son...I would only wish that I was better informed from the start about how to help him! Much love to you!ReplyDelete
Hi Matthew, Annie, and Owen,ReplyDelete
Thank you for sharing your story! Our first born son Benjamin was diagnosed two days after birth with this rare condition (full ACC) 12 years ago this past September. He's an amazing, intelligent, thoughtful, caring person with the best hugs I've ever received. We have had many twists and turns in our 12 years and although some were very tough, and we are still, will continue to deal with challenges they are what they are challenges. We deal with them head on together and we're all a better family because of Ben. If you ever want to talk I'm here. We live in Northern Colorado, and one day I do hope to be at the conference to be surrounded with so many beautiful families who understand us, like we understand them.
Oh, and spot on of your description of ACC...I'm stealing it. :)
Michelle, Paul, Benjamin, Sierra, and Eva Diaz
Hello Matthew, Annie, and sweet Owen!ReplyDelete
I am the mom of four children..in fact, I just saw this article and wanted to quickly reply before heading out to pick them up from school, but wanted to connect with you because my son, Ryan, has complete ACC. He is 13 1/2, and I, too, struggle to remind folks what this means for our son. Ryan also has mild CP (left hemiparesis). That being said, and in a "nutshell" because of my lack of time right now, I wanted to let you know that you will continue to be impressed by Owen. Our boys, as I often say, have to work hard to even get to where we consider our starting points. I admire Ryan so very much, as I am sure you do your son. I would be happy to share more with you and your family....but just wanted to drop in and say hello...welcome to Holland ;-), and there is a whole community out here who share your journey.
Greetings! SO glad to have others who understand! My son has ACC as well. He is 13 months old. Would love to stay in touch!ReplyDelete