One important piece of information I've learned over the last 2 years is that I can't compare Beau to other children with a disorder of the corpus callosum. Prior to attending a national conference for families/individuals with disorders of the corpus callosum, I thought that maybe there was a "standard" or a list of things that these children would or wouldn't be able to do. I thought I was going to go there and "see the future". I was naive in thinking that and the best experience for me was attending that conference because it brought me into reality. Over the last 2 years I've spoken with several parents from all over the US and other countries (having met them at the conference) and there are some amazing similarities between our children, BUT having said that our children are still very different.
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| Beau & his friend Sammy at the NODCC Conference in California |
I guess it should only make sense. Beau has partial agenesis of the corpus callosum and another child may have the same diagnosis - EXCEPT, Beau may have grown approximately 43% of his corpus callosum and the other child may have grown approximately 63%. There is no way to actually measure this (that I know of), so I'm using these as a way to explain my thinking, but it does make sense that their abilities might be completely different. If we set their two MRI images right next to each other they would look completely different. Not only that, some of these children have other chromosomal abnormalities or disorders on top of the DCC. My other naive thought was that children with complete agenesis of the corpus callosum may be worse off than those with partial. That thought has completely left my head as I have met several other children with complete ACC and some of them have more abilities than Beau. It's just amazing to me that there can be such differences among those with disorders of the corpus callosum. It also gives me hope that nothing is impossible for any of these children.
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| Beau's MRI Image |
Here's general overview of Beau and what some of his characteristics are. I feel that Beau has great knowledge and understanding of most things being said to him. He isn't able to communicate using speech so this causes issues for communication. He has however learned approximately 30 sign language signs. He loves mirrors and can often learn better by watching himself do a task in front of a mirror. His balance is poor, but he does walk although he falls quite often. He has greatly improved his ability to catch himself with falling. He has very flat feet which will require that he be fitted with orthotics - which runs on my side of the family, so this may not have anything to do with his disability. He is extremely loving and happy and very social. He appears to memorize things such as knowing locations as soon as he sees certain landmarks, knows people by the vehicle they drive, remembers where he places/hides certain toys, etc. He is obsessed with Matchbox/Hot Wheel cars and if he could talk I believe he could tell us details about all 300+ cars that he owns. He will go through his tubs of cars and find ones that look most like mommy or daddy's car. Our doctors had informed us that sometimes children with a disorder of the corpus callosum would have optic nerve problems as well as problems with their pituitary gland. He is followed closely not only by a neurologist, but a endocrinologist and ophthalmologist. Beau has better vision than my husband or I - he can spot an American flag (another favorite of his) from a mile away out in the middle of a corn field. He continues to have levels checked for his pituitary gland and so far each time, they've come back normal. Music is a love of his. He doesn't care to watch much for television or DVDs but the second the music comes on for a Disney show (like Handy Manny or Mickey Mouse Clubhouse) he snaps to attention and then immediately starts dancing. He loves animals and becomes so animated the second he sees one, especially a dog. Beau has epilepsy and is on two different medications that he takes daily to control them. He attends physical, speech and occupational therapy on a weekly basis, a couple times per week.
I guess my biggest reason for writing this entry is to let other newly diagnosed families/parents know NOT to try to compare their child with other children with a DCC. No two children with the diagnosis of Agenesis or Partial Agenesis of the Corpus Callosum are alike. I also believe that as we sit here, our children are developing new connections in the brain to compensate for those that are missing. The brain is an amazing organ and we can't underestimate it's abilities.
