Thursday, September 22, 2011

The Girl of a Million Words

We talk to each other all the time. We didn't use to. Things were not always so easy between us. I suppose that is usually the case in any typical father/daughter relationship. She feels like nobody gets her, and he feels like he is not an important enough figure in her life whose words get ignored. It just took a little while for me to understand her language and speak to her at a level in which she could comprehend what I was asking of her.

Bianca was incredibly moody. She could go from smiles to frowns in a matter of seconds. I wouldn't even know what set her off most times. It used to make me feel so incompetent as a father. It was hard for her to explain, and when she did try to tell me, I often felt like she was speaking another language. She would try to convey to me why she would get so emotional, but I didn’t have the experience yet to really comprehend what she was telling me. That would make things worse as she would get even more upset. Tears streaming down her face, desperation in her eyes, she would work hard telling me over and over what was wrong. Tears would fall from my eyes as I so badly wanted to reach a common ground and help.

Mornings used to be the times of greatest friction, and often times still are. Sometimes my daughter can be a pain to get going in the mornings. Despite repeated pleas, there would be some nights that she just would not want to go to bed, or stay asleep. Like most kids, the threat of disciplinary action failed to achieve the desired results. I would tell her that she would be cranky and tired all day if she didn't get some sleep, and she would blow me off. We have had several serious sit downs about our expectation in terms of a bedtime, but it was always one-sided. When the teachers sent home notes saying that Bianca was particularly crabby or not co-operative, I knew that a lack of sleep was the reason.

When Bianca comes home from school, the moment she gets off the bus she tells me what kind of day she had. I am glad that she seems to have way more good days than bad ones. She seems to enjoy her classmates and her friend from her dance class is in her class at school. I know that they look out for one another. Friendships are so important when you are that age.

When she is home, a lot of the times Bianca just wants to be alone in her room. She doesn’t want to chat or share with the family. It can make you feel alienated, but I know that she loves me. I try to not take it personally. Her room is her sanctuary. She feels safe and secure in there. Baby brothers and sisters can be a handful and sometimes you just have to get away. I still force her to spend quality time with her brother and sister. I make her be in the family room. Sometimes she still keeps to herself, but the moments that she does engage her siblings make you feel like you are on the right track forcing the issue.

She is a great help around the house. When I ask her to do something for me, it may take a little while, but she does it. She usually doesn’t even complain much.

My favorite time with Bianca is probably on Thursdays when we get to spend some alone time together in the car. Through my rearview mirror, I marvel at the way she looks at the world. Excited and observant, she always appears to be taking everything in. When the windows are down and the breeze hits her face, she grins from ear to ear thankful for the fresh breeze and the cool sensation.

We have shared so many great moments over the last year. It seems like a lifetime, but despite all the obstacles, we kept at it. We fought through our differences to achieve a level of understanding that I don’t come close to having with anybody else.

That is because Bianca doesn’t have the ability for conversational speech… yet.

A year ago the brilliant powers that be at my insurance company decided she was not making “significant improvement” so they would not approve her for anymore speech therapy. We appealed to no avail. So, like many other families out there without the license to print money, we had to stop and wait for a year in order to have her re-evaluated.

It was a dark year for me that was filled with anger, sadness and despair. Not at my family, but at the world… at the system. A kid can’t verbally express a desire or need, yet is told by a company that she is in essence, not worth the investment.

She is.

Fortunately, for reasons that I have yet to understand, Bianca was approved again for 6 months of speech therapy after being re-evaluated. I feel grateful and fortunate, but still angry for the time lost.

This past year, we have gotten to know each other so much better. She speaks to us ALL the time. It may not be with words, but she communicates. When she does use words, she makes them count. No system can tell me that my daughter is not making significant improvement. Not only is there improvement on a DAILY basis, I can guarantee you it is significant… at least to me. She is the girl of a million words… she just might not SAY all of them.

Whenever I get down about her speech hurdle, I go back to the same moment in time… November 23rd, 2010. I relive the moment in my mind on a daily basis… every time I tell Bianca I love her, and hear nothing in return. I was lucky enough to get it on video.

If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.

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  1. Great post and even greater video...heart melting! I am still waiting for my older baby to vocalize his love for mom in words-hope it will happen soon! Best wishes!

  2. As someone who waited a long time for those words, I feel you. Thanks for sharing!

  3. Those 3 words are amazing to hear!! I'm still waiting for them, I've just recently heard my little 3yo boy say Mumma & I can't get enough of it now!
    Well Done Bianca!

  4. This really choked me up. What a beautiful video. I have a son who has some speach, and a 5 year old daughter who is non verbal. My son says "I love you Dad" only after I say "I love you Max". My daughter has mumbled she loves me a few times, thank goodness for echolalia :).
    I too look forward to my drives with my kids, I drop them off every morning for school, my daughter rides along the longest (and I pick her up everday, just me and her). Even though she is non verbal she understands everything I say to her, and she is aware of her surroundings so much that if I change my route at all due to traffic, she has a complete meltdown.
    One thing I think ALL autism partents have in common is the constant fight with insurance companies. Currently, we are in a huge fight with our company that is taking us all the way to court. They actually want to take my out of his school (a first of it's kind Autism only charter school) and put him on meds??? The Autism center which runs the school is helping with their attorneys, and I feel pretty confident we will win this... (until the next time).
    keep up the great work, your video "fixing autism" inspired me to start my own blog, there are not enought resources for dads out there.

  5. Beautiful again... :) a child of a million words indeed..There's always hope and always improvement.. :) My son Holden was hardly talking at age 5. He made lots of clicking and rolling his tongue noises and screams and yells...He did a lot echolalia..After hearing him say mama @ age 2 and then regressing and not saying it at all I thought he may never talk again.. now at almost age 8 and after lots of echolalia and speech therapy he talks a lot.. sometimes conversational though often not...He shares a lot with me...with every day and every smile and every tear they grow...I love you are the most precious words...and now Holden tells me how beautiful I am...I look forward to reading more and more of your story and seeing Bianca talk more and more.. :)