Thursday, December 27, 2012
Merry Christmas!
For unto you is born this day in the city of David a Savior who is Christ the Lord. Luke 2:11
Merry Christmas!
R, L, A & M
Monday, December 24, 2012
Tuesday, December 18, 2012
The Post Office: A Year Later
Setting the Scene (December 2011): A, M and I took a trip to the post office to mail out our Christmas cards. There was nothing out of the ordinary about that day or the people in the post office with us.
A lost it. No one said anything to her. No one touched her. There may have been a smile in her direction or a friendly nod or wave. She cried uncontrollably, yelling, moving her body. Most people would think she was having a tantrum but everything in me knew it was something else.
It was fear. It was anxiety and the inability to know how to express those emotions.
It was around this time last year that it became increasingly obvious that something was not okay with A. Her ability to handle adult interaction was deteriorating and I was dumbfounded as to why. She wasn't "just having a bad day" or "really needing a nap" both excuses people regularly offered to me and I offered up myself. God blessed me with the ability to know it was something else.
We left the post office with tears in both our eyes and got back in the car. It felt like my new reality had just been confirmed. There was no where I could take A without this fear pouring out of her. Adults were scary to the extend that the DJs on the radio were too much for her to handle.
After seeking professional help we discovered that A has Sensory Integration Disorder. It can come in a variety of different ways but for A it affects just about every aspect of her daily life. It is a neurological disorder that results in her brain's inability to properly recieve the five basic senses. Normally a brain takes in all five senses to form an accurate picture of ones surroundings and how to react to the information appropriately. That is not the case for A.
Her body is almost always uncomfortable with its surroundings thus creating fear and anxiety. It was described to me in this way: If you were wearing an outfit that was really itchy. If everything in your day went perfectly then the outfit would bother you all day but it would be somewhat tolerable. You wear that same itchy outfit on a day when things keep happening that are unexpected then the itchy outfit is going to seem that much harder to tolerate. You would need to make extra effort not to itch the scratch, little things seem harder to respond appropriately because you are already struggling in your own skin/clothes. By the end of the day of constant uninvited life interruptions and unbearable itching you are so frustrated and uncomfortable that the little things that normally wouldn't bother you set you off before you have a chance to relax and calm down.
This is what A lives with daily. We've been blessed with, in my opinion, the two best OT's (Occupational Therapists) ever that are working with A to help her manage this disorder. A is a fighter in the best sense of the word and we are enormously proud of her. I can't stress that enough! Things that come so easy to us, things that we take for granted, are overwhelming for A. People. Events. Objects. Sounds. Touches. Movements. Even if it is all things she loves it can become too much for her to handle if she is not prepared appropriately. She has to overcome so very much physically and mentally to be able to do every day tasks that seem so simple to us. She has a long road ahead of her but she has come so incredibly far.
Setting The Scene (December 2012): A and I went to the post office to mail our Christmas cards. On the way from the car to the post office we passed 4-5 people. A was singing each step of the way and never once hesitated forward. She helped me send the cards off in the mail and she sang her way back to the car.
The other day she went to the store with R and she strolled down the isle happily without fear. We listen to the DJs on the radio. Last week she sang with her classmates in front of a crowded room of parents flashing cameras in her direction and she was okay. She hugs family more frequently and if you're really lucky you may even get a kiss.
I never want to forget what a tremendous blessing it is that A can now go places with less fear and anxiety then she had just a few months ago. God is good. He is faithful. He hears our cries. As we are in this Christmas season I am especially thankful for a Savior, born in a manager, that cares so deeply for my daughter. Last week when we were talking about school A told me that God was going to hold her hand when she had to do something she didn't want to do/was uncomfortable doing. I think He's held her hand a lot this year. :)
And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers
of hell can separate us from God’s love. - Romans 8:38
A lost it. No one said anything to her. No one touched her. There may have been a smile in her direction or a friendly nod or wave. She cried uncontrollably, yelling, moving her body. Most people would think she was having a tantrum but everything in me knew it was something else.
It was fear. It was anxiety and the inability to know how to express those emotions.
It was around this time last year that it became increasingly obvious that something was not okay with A. Her ability to handle adult interaction was deteriorating and I was dumbfounded as to why. She wasn't "just having a bad day" or "really needing a nap" both excuses people regularly offered to me and I offered up myself. God blessed me with the ability to know it was something else.
We left the post office with tears in both our eyes and got back in the car. It felt like my new reality had just been confirmed. There was no where I could take A without this fear pouring out of her. Adults were scary to the extend that the DJs on the radio were too much for her to handle.
After seeking professional help we discovered that A has Sensory Integration Disorder. It can come in a variety of different ways but for A it affects just about every aspect of her daily life. It is a neurological disorder that results in her brain's inability to properly recieve the five basic senses. Normally a brain takes in all five senses to form an accurate picture of ones surroundings and how to react to the information appropriately. That is not the case for A.
Her body is almost always uncomfortable with its surroundings thus creating fear and anxiety. It was described to me in this way: If you were wearing an outfit that was really itchy. If everything in your day went perfectly then the outfit would bother you all day but it would be somewhat tolerable. You wear that same itchy outfit on a day when things keep happening that are unexpected then the itchy outfit is going to seem that much harder to tolerate. You would need to make extra effort not to itch the scratch, little things seem harder to respond appropriately because you are already struggling in your own skin/clothes. By the end of the day of constant uninvited life interruptions and unbearable itching you are so frustrated and uncomfortable that the little things that normally wouldn't bother you set you off before you have a chance to relax and calm down.
This is what A lives with daily. We've been blessed with, in my opinion, the two best OT's (Occupational Therapists) ever that are working with A to help her manage this disorder. A is a fighter in the best sense of the word and we are enormously proud of her. I can't stress that enough! Things that come so easy to us, things that we take for granted, are overwhelming for A. People. Events. Objects. Sounds. Touches. Movements. Even if it is all things she loves it can become too much for her to handle if she is not prepared appropriately. She has to overcome so very much physically and mentally to be able to do every day tasks that seem so simple to us. She has a long road ahead of her but she has come so incredibly far.
Setting The Scene (December 2012): A and I went to the post office to mail our Christmas cards. On the way from the car to the post office we passed 4-5 people. A was singing each step of the way and never once hesitated forward. She helped me send the cards off in the mail and she sang her way back to the car.
The other day she went to the store with R and she strolled down the isle happily without fear. We listen to the DJs on the radio. Last week she sang with her classmates in front of a crowded room of parents flashing cameras in her direction and she was okay. She hugs family more frequently and if you're really lucky you may even get a kiss.
I never want to forget what a tremendous blessing it is that A can now go places with less fear and anxiety then she had just a few months ago. God is good. He is faithful. He hears our cries. As we are in this Christmas season I am especially thankful for a Savior, born in a manager, that cares so deeply for my daughter. Last week when we were talking about school A told me that God was going to hold her hand when she had to do something she didn't want to do/was uncomfortable doing. I think He's held her hand a lot this year. :)
And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers
of hell can separate us from God’s love. - Romans 8:38
Thursday, December 6, 2012
The Day In The Life Of Baby Doll
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| Reading The Good Word |
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| Making some lunch |
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| Eating lunch in the high chair |
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| Getting ready to splash in some puddles |
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| A hug before heading off to school |
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| Walking to school |