Beau

Beau
Our "Beau"tiful Blessing

Friday, July 15, 2011

You make me smile....

There aren't too many moments with Beau that I'm NOT smiling.  The kid is a ham and makes me laugh and smile even on the worst of days.


Beau is enjoying certain toys NOW that he should have been enjoying a year ago.  Here's what I mean; because he is developmentally delayed, he's just now understanding toys that a year ago he didn't get.  Parents with intellectually disabled/developmentally delayed children should get what I'm saying.  It's frustrating that when the child finally understands the toy, they're too big to enjoy it fully.  This means that he's bigger than the average kid should be to be enjoying his cozy coupe, for instance.  He has finally figured out how to move his legs to make the car move forward.  Unfortunately he's 3 1/2 and pretty tall and when he tries to move his legs forward his knees hit the steering wheel.  BUT, because he is my little genius, he's come up with the alternative way to drive his car.  Take a look below!


Now that's using your head!  As you can see, he's standing up in the car with his head out the windshield and he's walking forward - which isn't very easy to do.  He's bound and determined to get his enjoyment out of this car! His ability to make the best of any situation is what I love so much about Beau. 

I thought I would throw in a few more pictures that would give you an idea of how funny our little man can be and why we just can't get enough of him!  Here he is in front of one of his many mirrors.




There's nothing better than walking around in your diaper, your t-shirt, your safety vest AND for good measure - a mixing bowl on your head!  Never can be too safe in your own home lol!

Wednesday, July 13, 2011

No two children with a DCC are alike......

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. 


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. 



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. 

Tuesday, July 12, 2011

"The Retarded Moms"

I got a really nice email the other day from a woman, who is a mother to a 61 year old daughter who has an intellectual disability and is unable to speak words.  I met her early on in my quest to make connections with other mothers of special needs children.  She may hate me for saying this, but I look at her like a grandmother figure :) She volunteers for our local ARC and is a huge advocate in our community for the handicapped.  Hopefully she won't mind if I share a few parts of her email.

"Wow, I made it to your blog tonight.  Absolutely wonderful girl."

During the next paragraph she talks a little about her daughter.

"Like Beau, a really sweet loving special needs child.  She and Beau are definitely God's angels.  In our human life this is as close as anyone can get to an angel on this earth and they are ours and we can love and hug our own special angel....not everyone is that blessed.

I could go on and on....just give a mother of a special needs child the floor, and the words will spill out.  You are doing a great job being a mom and Andy a father."

This next section of her email stopped me short and I had to re-read it, because I wasn't sure I'd read it correctly.......

"Years ago when the moms went to get things for our organization (the ARC), guess what they called us? "The Retarded Moms"."

She states that it didn't really bother her and the other "retarded moms", because it meant someone was talking about them and their organization.  If people were talking, money was being donated.  Can you imagine though?  I started crying when I read that in the email, but back then, that was the terminology they used.  I don't know that I could have laughed it off like they did, but I guess they were just glad someone was paying attention to their organization. 

"One thing is for sure without (her daughter, I'm leaving out her name) handicap in my life, I'm absolutely sure I would not be doing what I am doing...volunteering for the handicapped.  It is almost a full time obsession.  But I love it and it is so worthwhile.  And it gives me a special purpose in life and I get more out of it I'm sure than I give."

The kind and loving email went on with praise for Andy and I and praise for our family and the support that they provide for Beau.  It really inspires me and lets me know that even 61 years later, she is still fighting for her daughter and still educating the community and anyone that will listen about intellectual disabilities.  I can only pray that I will still be like this when I am her age.  She's definitely an inspiration to many, but a big inspiration to me.  Support your local ARC!


Afraid of sleep....

One of my fears with Beau is my fear of sleep.  Why?  When Beau has a seizure it has been during sleep.  His seizures used to be during the initial phase of sleep, generally within the first 30 minutes of falling asleep.  They've changed over the year and some have actually occurred coming out of nap or during the early morning hours after a night of sleep.  My guess is that it has to do with REM sleep; either going into REM or coming out of REM.  Whatever the reason, it terrifies me.  I still feel a lot of guilt (not nearly as bad as I did early on) about the first seizure Beau ever had - the night he was sent to Iowa City by ambulance.  I have a good friend that has a child with a DCC (disorder of the corpus callosum) and her little boy also has seizures.  It's been nice to have her to talk to about this topic, because she completely understands where I am coming from.  People from the outside don't really "get it" or understand these feelings and fears that I have.  I often wonder when I'll ever get over this fear and when I'll ever be able to let Beau sleep on his own.  I always seem to say an extra little prayer for Beau before sleep, praying that God will protect him during his sleep. Super paranoid?  Yes, probably......but look at what I'm trying to protect.