"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Sunday, July 26, 2009

Miss Smarty Pants

Before Marissa was born, at about 20 weeks gestation, it was brought to our attention that she had an anomaly in her brain. The left ventricle was larger than it should be.  We were given several possible outcomes for this. From "it could turn out to have no effect on your baby" to "your baby could be severely mentally disabled".  And everything in between.  

All this to say that, from every early on, we have known that Marissa may be intellectually disabled.  When she was born, the enlarged ventricle took a back seat because it was discovered that she was missing part of her corpus callosum (the piece of the brain that connects the left and right sides and allows them to communicate with one another).  Interestingly enough, we were given the same speech as before about not knowing what effect, if any, this would have on her ability to learn and develop.  Some people with this brain anomaly have severe intellectual disabilities. Some people with this brain anomaly are only discovered to have it in an autopsy. These individuals led a "normal" life with no indications there was anything different with their brains.  

When we received this news, we ulitimately decided to treat her like we normally would and allow her to show us what effect, if any, this brain anomaly would have on her.  We decided not to label her because in doing so, we might unwittingly limit her potential.   We got her home from the hospital and went about our lives as normally as possible, dealing with her physical disabilities, watching and waiting for her to show us how smart she would be.  

As we watched her physically develop, her pediatrician noted that her head circumference was smaller than it should be.  He diagnosed her with Microcephaly, which is one more condition that would indicate the potential for intellectual disability.  Her pediatrician and some of her other doctors hae been baffled by the fact that, with all these factors combined, she is developing normal cognitive skills thus far.  

At 28 months old, she knows over 100 signs, can speak at least 50 words, maybe more, speaking about half of those words clearly.  While she is speech delayed, it is because she has the trach and was not able to tolerate her speaking valve until she was about one year old.  She didn't have a voice for the first year of her life, so she started developing speech later than normal.  She understands the concept behind the words and she does try to speak, she just can't always say them clearly, so this is a physical delay rather than mental.  She understands emotions and can convey them to others.  She helps us with certain tasks like getting the wipes and diaper when she needs a diaper change.  She can bring us an item we ask for, when she is not being stubborn!  She lets us know when she thinks she needs to be suctioned, she says "excuse me" after she burps, and she lets us know when she thinks she has pooped.  We have started potty training and the other day, she tooted, grabbed her booty and made a mad dash to go upstairs to the bathroom.  Nothing has "happened" on the potty yet, but she gets the concept.  She knows body parts and animals.  She will "read" her favorite books along with us and can sing along to her favorite songs.  And most recently, she learned how to count to five and is working on counting to ten!

I hope you all don't think I am bragging too much.  I am not meaning to throw it in anyone's face.  I have never been one to compare my kid to anyone else's or think that she is better than someone else.  I am just so ecstatic that Marissa is showing us that the anomalies in her brain are not affecting her cognition thus far.  I am not going to take it for granted that my special needs daughter shows us everyday, in new ways, just how smart she really is.  

Praise God!!  :)


Anonymous said...

She's amazing!

Alicia said...

Hey Laura,

What happened to your blog? I would love to be able to still check in on you and your sweet family.

Dana said...

Your not bragging your are just amazed at your smart daughter. I am very happy for her. Good luk with the potty training. Keep us posted.

I for one love reading about the success of other trach kids. Thanks for sharing!

The VW's said...

I'll second that, Praise God!!!

Great job Miss Smarty Pants!!! I love hearing your sweet voice! What an inspirational little girl!

I can see how much time and devotion you and your husband put into Marissa. I have a feeling that she is so smart because you guys keep her so stimulated and motivated! Keep up the great job of being her wonderful parents! I'm so happy for you! And, BRAG ON!

Michelle said...

I don't see it as bragging! She really is a smarty smart pants and we love her for that!

Keep up the great work Rissa!

Auntie Chelle

The round-the-worlders said...


Hope said...

It's not bragging. You're celebrating your daughter's abilities, which is wonderful. Marissa is a miracle and she continues to prove that she will write her own story. She's amazing, as are her parents!!

Nana and PaPa said...

Keep on celbrating these type of accomplishments...of course, who knows what the future will hold. Let me think...hhhmmm...didn't we say that about 2 years ago?? LOL She IS amamzing and for all the families out there that have special needs children...they too celebrate EACH and EVERY accomplishment their little kiddos achieve...no matter WHAT that accomplishment is...that's the way it should be! Keep on loving and working with Marissa...she is an absolute blessing to all of us!
Nana & PaPa

ANewKindOfPerfect said...

What an amazing girl she is. Brag away mamma!! :)