Thursday, August 25, 2011

Random thoughts...

It has been a while since I blogged and frankly I am not even sure I know how to do it anymore. This post will be a little different than anything I have ever posted. It is 5:30 in the morning and as I sit here, at work, quiet, with a lot of thoughts running through my mind, I feel compelled to write. Most of those thought are centered around a little girl and a little routine that has come to mean so much through the last few years...

Daddy to little Girl: Who has my heart?
Little Girl to Daddy: I do...
Daddy to little Girl: and where is it?
(Little girl taps chest over her heart): Here!

Little Girl to Daddy: Who has MY heart?
Daddy to little Girl: I do...
Little Girl to Daddy: and where is it?
(Daddy taps his chest over his heart): Here!

Daddy and little girl touch the tips of their index fingers and say in unison:
Forever and always.


Seems like a silly routine but it is one that she and I did for three years, every night before she went to bed. After moving to our new life into a house full of little girls and boys it seemed like those routines changed and we didn't do it every night anymore, but still every now and then Bethanie and I will find ourselves in a little moment, just Daddy and Daughter, and we do it again.

Those that know Me and my family know that Mandy and I have been dealing with changes in Bethanie over the last year. Symptoms that showed in her speech and in her behavior. It has been hard to watch her struggle and my heart has ached for my little girl many times. I have watched her as she struggles to grow up, watched her as she struggles with an inability to express herself and an unfortunate inability to make friends and I have hurt for her, and have, along with her mother, shed many tears for her.

This last week Bethanie was officially diagnosed with mild to moderate autism. The diagnosis in itself was no surprise, Mandy and I had done our research and studied and objectively watched Bethanie (as objectively as a parent can at least) and had come to the conclusion long before we ever made it to the psychologist. She has a tough road ahead but thankfully she is in much better shape then a vast majority of kids with this diagnosis. She is high functioning, extremely smart and always inquisitive, if not always very cooperative. She has some good skills as an artist and a fascination with patterns that made the psychologist mention that she has potential in some good fields such as architecture or graphic designs. The point is that this is not a dead end for her by any means, it will just take a little harder work from her.

Mandy and I have battled through a variety of emotions this week. Frustration whenever a fight breaks out with Bethanie, sadness when she tries to get something out and just can't seem to get her mouth to say what her brain is telling it and anger...anger at a system that makes what is already a difficult situation that much more difficult. I discovered this week that due to the fact that my employer's insurance is self funded they are not bound by South Carolina regulations that require other insurance companies to cover autism. When I called to talk to them about it they were very dismissive about what they term a "behavioral disorder", as though a good spanking and a long time out will cure this.

Now we begin the long process of attempting to find assistance to help pay for the therapy, the medicine and the treatment that is necessary to help her cope with this and overcome it. We are ready for this fight, because she is worth it. She is a cute little brown eyed girl with a wild head of hair that she still hasn't figured out how to brush but damn she sure tries! Are there times I am over protecting? Yes...like the little girl across the street that is no longer welcome at our house after she snidely asked Bethanie's sister if she was "retarded"...yeah I get a little protective and ugly about it...but she is my baby...and she is my wounded lamb...so cut me a little slack...I am entitled to it.

Today, while at the doctor's office he put his stethoscope to her chest and told her he could hear her heart. She just shook her head and smiled and said...no that is Daddy's heart...then points to me and says, and Daddy has my heart. Only Mandy and me understood it; in the simplistic and literal manner of an autistic child she had gone beyond the little play, the little scene and had come to the literal conclusion that I held her heart in my chest and she holds my heart in hers...it was a sweet moment that made me tear up...forever and always, baby girl, forever and always....

2 comments:

bethannchiles.com said...

What a sweet post. Came via the FB link posted by Leslee H and was so glad I found you. I have an interest in autism simply because I have a niece who is devoted to working with autistic children and I have learned much through her. Your sweet daughter does indeed face challenges ahead of her but with your heart in her she will do just fine. Thanks for sharing such a wonderful post with the world today. Blessings, Beth Ann

Kat said...

I am so grateful to have two healthy happy kids. You and Mandy have such an amazing attitude; you took the time to do the necessary research and you are supporting (and protecting) her every way you can. She sounds like a great kid and, with your support, I know she'll go a long way. I really hope that you can get the financial support you need whether through insurance or "the system"; all kids deserve the chance to thrive. (Nice to see you blogging, by the way!)

 

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