Sunday, May 27, 2012


Things are going well in the Fanshier house these days.  We continue to see so much progress with Alina.  Where she used to read below grade level, she is now excelling.  She is also learning what things make learning hard for her and when she needs to make changes.  We have a 504 plan for her that allows her to tell her teacher when things are overwhelming in the class room so she can go to the library to work.  Not that we needed a plan for her teacher to be doing's just nice to know there is a record of it in case.

The ironic thing that never ceases to amaze me is the child that can scream the loudest is also set off by loud noise.  To me that's like an elephant being afraid of heights.  How can someone who screams over nothing have loud noise as a seizure trigger?  I don't know the answer to this but I know it's true.  Alina also knows it to be true.

The other night for example, we went to a Knights of Columbus dinner. Now never underestimate the ability for a group of older men to get loud when alcohol is involved.  The noise level in the room creeped up and we watched Alina struggle more and more to eat her dinner.  Finally, daddy leans over and asks Alina if she's okay.  Alina responded with, "no, it's too noisy I need to go outside."

So we took turns walking with her outside to get her out of a trigger zone.  So irony is not lost that the loudest of our three also needs the quietest atmosphere....who knows maybe she started yelling to compete with how loud the world seems to her?

Alina had her MRI this week and frankly I was worried that Missy would not be able to hold still long enough as she tends to be a wiggle worm.  But with much coaching I watched my little girl take on a task that many adults fear.  She climbed up on  the table, got slid into the tube, closed her eyes and willed herself to stay still and calm.  She ultimately was able to sort of fall asleep. What a trooper!

I realize now in my interactions with Alina that I had kind of ignored her for years.  I gave her love, I gave her time, but I think a part of me got tired of her being different and having no answer and no resources on what to do.  Last year her teacher told me she was the most empathetic child she had ever met and I was blown away by this observation . As well as embarrassed that I never saw that in her.  I was too busy dealing with sibling spats and her pacing and her need for repetition that I couldn't see anything else about her . After that I tried really hard to see it.   It pains me to admit that I was just so frustrated I failed to see all the good that was in her.

She used to struggle so badly to get a thought out and I never knew why, but I knew it was annoying to hear the same sentence over and over with no completion.  I knew her teacher would tell me Alina had lots of stories and details rolling in that head of hers and at times I heard them, but not as much as her teacher would.  All I heard was fighting and homework frustration and pauses mid sentence.

I have seen the beauty in Alina though and it kills me to know I almost missed it.  A couple of months ago Mrs. Wilson was having a tough time in class and just frustrated with kids not listening and almost at her wits end.  She told me that amidst the chaos, Alina walked up to her and sensing everything gave Mrs. Wilson a hug , then tells her, "You know you are a great teacher!!  I know it probably feels like you're not sometimes because the kids don't listen to you or they are being loud, but you are a great teacher."  Mrs. Wilson shared the story with me because at that moment she had been feeling low and like she was not a good teacher.  Alina sensed that and on her own boosted up her teacher.  Alina does these kinds of things all the time.  What I thought was an almost unfeeling child is really a child who listens more than you realize.  She reads body language, tone of voice and your words and she can tell what is going on.

I try to not berate myself, for not doing more for Alina earlier.  I have found out that this type of seizure disorder is often missed and usually is not discovered until 9 or 10.  Which means for most kids they have had years of being labeled as a goof off and years of missing vital information in class.  Often it is difficult if not impossible for them to catch up. 

We really don't know if her odd behaviors started because of the seizures or just worsened because of who knows how long she's been having seizures.  It pains me still to know how lost my little girl was.  She felt like she was drowning and no one was able to throw her a rope.

The good news is we found it now not three years from now and she is doing wonderfully.  I also notice something new in my daughter which is sooooo nice to see.  She has confidence and her eagerness to learn is back.  She doesn't take for granted what we all do.  She appreciates being able to focus and therefore perform daily tasks with ease.  The other day she spent an hour reading in the play room.  She laid out several books and read them each in turn.  She used to do this but she would make up the words.  She couldn't focus long enough on a sentence to read it through so she had given up on that.  She for a while would only read books with 2 word sentences (probably all she could focus long enough on.)  Now my baby READS those books.  She's not pretending to read them. She also knows the difference and will announce proudly that she read them by herself and got all the words right. 

We take so much for granted and Alina has at such a young age learned the lesson not to.

I am so proud of my Alina and how far she has come in such a short time.  I also am proud of who she is as a person.  She has taught me a lesson.  Sometimes, in the quiet is where we learn the most.  Sometimes in the quiet is when we understand people the most. Sometimes we all need quiet and we need to recognize when that is.

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