Today was a beautiful fall day. The wind was constantly keeping the world teetering between summer and winter, leaves dropped here or there, children played in the sand at the park. Enter an enthusiastic Scarlet who has waited all day for the freedom to run in the sand and play at the park. She spots a blue sand pail and loves the idea of playing with it, I notice her interest and sprint after her to divert her from kicking it while a little boy is busy playing in the sand beside it. Baloons from a nearby birthday party bob in and out of view while the boy's caretaker says "It's ok, let her play". I am taken back by her kindness, she shows no shock or disdain, which is usually what such behaviour is met with. Scarlet sits herself in the sand near the boy, eager to be in on the game that looks so fun, but unable to figure out how to appropriately engage him. She flicks sand for a bit and I help to redirect her attention to something that will be more successful for her. As she and I run to the slide I hear the caretaker say, "It's ok she was just born that way", Skye calls my name, she is swinging all alone and wants my attention. I think to myself, "Scarlet was not born that way, she was born just like your child and she was taken away." As I push Skye up, up, up, I see Scarlet heading towards the sand toys again. This time I am not fast enough to catch her but she sits down, beside a little girl and I help her to use a shovel and fill the bucket. Scarlet has a sand superpower, she is like a sandstorm when left to her own devices, I am often her guiding force. ;-) On such a beautiful fall day, I knew this little girl did not want to experience the wrath of a sandstorm, so I was closely helping Scarlet play appropriately. That is when the little boy's caretaker, a complete stranger, wanted to tell me what a wonderful mother she was by explaining Scarlet's odd behaviour to her son. She told me that he had a questioning look on his face so she explained to him that she was just born this way, that she was different, some people are, but that she was probably a very lovely girl, she didn't mean to act like that.
Right now, I can think of a million things to say in Scarlet's defence, like She is a victim of autism who bent her normal little brain, she is beautiful and funny and can understand EVERYTHING YOU JUST SAID!!, everyone who works with her loves her, she loves music and princess stories and Jillian Jiggs and knowing that she is a big girl. Unfortunately, all I could choke out was "she wasn't, she wasn't born this way" and then I looked at my child who was banging her head in the sand because she doesn't like being criticized. I wished there was some way I could let her know how beautiful she is. She proceeded to cry and injure herself for the next 10 to 15 minutes and I prayed for a way to tell her that no matter what other people say about her, she is valuable and important.
I tried and have since been thinking of what I should say next time this happens. I told her that Mommy and Daddy love her, that Jesus loves her, that she is one of the bravest girls I know, that sometimes people are just wrong. It all seemed like I was grasping for straws. What could I tell her about her intrinsic worth that would stick with her and help her through another such experience. If her brother were being shunned at school or could never seem to measure up, I would point out his strengths. I would tell him that knowing God and bringing God happiness is one of the most important things in life. I would tell him that God looks at our heart and finds it more desirable than our abilities. "Man looks at the outward appearance, but God looks at the heart."
Recently I went through an audition process that left me feeling vulnerable and criticized for what I thought was a good try. It took me days to find my equilibrium from such an experience. I realized last night while going to sleep that I had been allowed to experience for a few minutes what Scarlet faces every time she goes out of our house. The only stabilizing force for me, when I kept hearing particular words of criticism in my head, was the knowledge that I have been created by a God who has a purpose for me. Pleasing God with my heart is my most important
endeavor. From now on I will tell Scarlet just that. I will quote II Corinthians 12:8-10 "I begged the Lord threee times to take this problem away from me. But he said to me 'My grace is enough for you. When you are weak, my power is made perfect in you.' So I am very happy to brag about my weaknesses. then Christ's power can live in me." I will tell her that her physical limitations aren't limitations to God, they just give him a larger canvas on which to paint his power. I am looking forward to watching this picture unfold. I am sure I will be surprised.
Saturday, September 19, 2009
Thursday, September 17, 2009
Tirade
Forgive me if I rant. It is 2:30 in the morning and I am sure Scarlet will not be sleepy again until 4:30... it always comes in twos, her middle of the night wakefulness, two hours from beginning to end. At 2:30 in the morning one feels like ranting, it just suits.
Yesterday was Scarlet's second day of Kindergarten. Decidedly a better experience. Today she had three people watching her, maybe that's how many it takes...however, the school board has yet to allot her a full time EA. After her biting and hitting episodes on Tuesday she has finally gotten the attention of all involved and a Special Education committee from the board of education was there to meet me as I walked in the doors yesterday.
I don't like to complain. A smile is always much better than a simper, in my opinion, but I have almost reached my smiling limit...then again it is 2:30 in the morning and Scarlet is jumping on her bed. We spent a good amount of time in June filling out reports, documenting Scarlet's likes and dislikes, making it possible for those who were to work with her to have the information needed to properly care for her. I am not sure why we took all the trouble because I have been asked the same questions that have been clearly documented about three different time to three different people this week. I don't know why they can't just read the report our resource teacher put together in a nice report cover complete with pictures. I have half a mind to start a t-shirt business for parents with special needs kids. It would start with number 1: the answer to the most frequently asked question about their child, number 2: the answer to the second most asked question about their child and follow in like pattern until all the questions are answered. The parent, who is probably feeling quite stressed and exhausted can read a nice book in one of their many meetings while the professionals copy the answers from their t-shirts. I think this idea might catch on.
Don't get me wrong, I am grateful for the nice people I meet who want to help Scarlet... a little bit of co-operation between those nice people would make them even nicer. I don't necessarily relish repeating the ways in which my beautiful, smart daughter can't measure up in society. I don't like defining her by her limitations and though I am grateful that someone put the "what are her strengths?" question in there, I feel really guilty when all I can say is... her eye contact and her smile. "Strengths" are very subjective. They wouldn't understand how I see Scarlet. I should have my list ready of what I consider strengths in Scarlet because I am caught off guard every time they ask that question. It is like being jerked the other way in a car, answering that question in the middle of defining her by her challenges.
Autistic kids are not known for their flexibility. Big changes like this in their lives can elicit quite extreme behaviours. I have spent most of the week trying to keep Scarlet from banging her head on any hard object that looks desirable to her. I have been trying my best to keep her from hitting her face with the palms of her hands, her little face is already bruised. I have been trying to divert her attention from biting holes in her hands and wrists, and well, it would be nice to convince her that a good nights sleep would make the next day better. I have a couple of bite marks that are still smarting. On top of all this I have to try to convince a bureaucrat in a nice office that my daughter needs to have someone with her at all times to keep her and the children around her safe. They, apparently, need me to call them frequently to express my concerns. I am trying to do this diplomatically. It is taking supernatural strength to refrain from yelling into the phone.
If the school board has decided to mainstream special needs kids, then they need to be prepared to offer these kids the help they need without their families having to become mini-experts on board policy.
I am ending with a verse, because it reminds me of the state of mind I need to be in. "Cast all your cares on Him because He cares for you" I forget the address, and it is too crazy an hour to go find it...but I am going to stop ranting and start casting. Honestly, God has taken care of Scarlet in amazing ways and I know He hasn't stopped. Sooo off to convince Scarlet to lay down and reminding myself that resting in God is what I should be doing at 3:00 in the morning.
Yesterday was Scarlet's second day of Kindergarten. Decidedly a better experience. Today she had three people watching her, maybe that's how many it takes...however, the school board has yet to allot her a full time EA. After her biting and hitting episodes on Tuesday she has finally gotten the attention of all involved and a Special Education committee from the board of education was there to meet me as I walked in the doors yesterday.
I don't like to complain. A smile is always much better than a simper, in my opinion, but I have almost reached my smiling limit...then again it is 2:30 in the morning and Scarlet is jumping on her bed. We spent a good amount of time in June filling out reports, documenting Scarlet's likes and dislikes, making it possible for those who were to work with her to have the information needed to properly care for her. I am not sure why we took all the trouble because I have been asked the same questions that have been clearly documented about three different time to three different people this week. I don't know why they can't just read the report our resource teacher put together in a nice report cover complete with pictures. I have half a mind to start a t-shirt business for parents with special needs kids. It would start with number 1: the answer to the most frequently asked question about their child, number 2: the answer to the second most asked question about their child and follow in like pattern until all the questions are answered. The parent, who is probably feeling quite stressed and exhausted can read a nice book in one of their many meetings while the professionals copy the answers from their t-shirts. I think this idea might catch on.
Don't get me wrong, I am grateful for the nice people I meet who want to help Scarlet... a little bit of co-operation between those nice people would make them even nicer. I don't necessarily relish repeating the ways in which my beautiful, smart daughter can't measure up in society. I don't like defining her by her limitations and though I am grateful that someone put the "what are her strengths?" question in there, I feel really guilty when all I can say is... her eye contact and her smile. "Strengths" are very subjective. They wouldn't understand how I see Scarlet. I should have my list ready of what I consider strengths in Scarlet because I am caught off guard every time they ask that question. It is like being jerked the other way in a car, answering that question in the middle of defining her by her challenges.
Autistic kids are not known for their flexibility. Big changes like this in their lives can elicit quite extreme behaviours. I have spent most of the week trying to keep Scarlet from banging her head on any hard object that looks desirable to her. I have been trying my best to keep her from hitting her face with the palms of her hands, her little face is already bruised. I have been trying to divert her attention from biting holes in her hands and wrists, and well, it would be nice to convince her that a good nights sleep would make the next day better. I have a couple of bite marks that are still smarting. On top of all this I have to try to convince a bureaucrat in a nice office that my daughter needs to have someone with her at all times to keep her and the children around her safe. They, apparently, need me to call them frequently to express my concerns. I am trying to do this diplomatically. It is taking supernatural strength to refrain from yelling into the phone.
If the school board has decided to mainstream special needs kids, then they need to be prepared to offer these kids the help they need without their families having to become mini-experts on board policy.
I am ending with a verse, because it reminds me of the state of mind I need to be in. "Cast all your cares on Him because He cares for you" I forget the address, and it is too crazy an hour to go find it...but I am going to stop ranting and start casting. Honestly, God has taken care of Scarlet in amazing ways and I know He hasn't stopped. Sooo off to convince Scarlet to lay down and reminding myself that resting in God is what I should be doing at 3:00 in the morning.
Tuesday, September 15, 2009
Divinely startled and first days
It never ceases to amaze me how I am caught off guard by God's kindness to me. Now I can hear some of you out there saying...God's Kindness!! you have a daughter with a debilitating nuerological condition, seems to me God's been doing some overlooking. To tell you the truth I have wrestled with that same question. Why does God, if he is good, allow innocent children to be inflicted with things like autism. Why does God, if He cares for me, not immediately answer my prayers for Scarlet's healing? How can I be caught off guard with his kindness while he is still not removing the very thing from my life that I would want most to be removed? I thought I should get this out of the way first, so that in subsequent blogs you would be able to hear what I have to say without that same question causing a lump in your throat.
I can't say that I will ever know for certain, but I can tell you what I have worked through...
"Where's the moon?" asks Skye, my youngest. She has just discovered it in the sky and is fascinated by its existence. We are in the car doing errands and have just turned the corner so that the once visible moon is now directly behind us. "Where's the moon?" she asks again. "Behind us, baby" I answer. She doesn't understand. We turn the corner again and the moon is now on the opposite side of the car. "Look, another moon!" exults Skye in excited tones. "No, baby, that is the same moon it is just on the other side now." She doesn't understand how one thing can stay in the same place while our moving can change where it appears to be. I don't know when that concept is scheduled to click on in her brain, but it is certainly not today as we continue our dialogue about the moon for some time. Honestly, I am a little exasperated by the end of the drive, because she just can't understand and nothing I tell her helps.
The human brain is incredible. It's capacity for learning and reasoning is astonishing, but with all of its ability, there are still so many mysteries it has yet to unlock. So many things created in our world that it cannot recreate no matter how it tries. In fact it doesn't even know all the facts about the galaxy that we live in. We don't know for certain how many galaxies there are. We don't even know for certain how an atom gets its energy. I am reminded, by Skye's inability to comprehend the placement of the moon, that I am in a similar situation. I have only finite understanding of my life and even the universe that I live in. If the God who created the astounding design of this universe knows more about me and my life than I do, and if He is interested in my good, then perhaps there is something that I am just not getting....quite possible. "For God so loved the world that He gave his one and only Son that whoever believes in him will not perish but have eternal life" John 3:16. Sounds like God maybe wants to give me some good things.
What I do know, is that God did not create a world with pain and sickness in it. That was human kind's choice. I also know that if God gave us everything we wanted it would be about as good for us as giving chocolate cake to my son for every meal. The truth is, we don't always know or desire what is best. Everyone knows what a child is like who always gets his way, who is never allowed to fail, who is always made to think the world revolves around him. He or she ends up pretty useless. Why then do I feel indignant when God does not treat me the same way? I want everything to be perfect, especially for my children. I want to have it my way, I want an easy life, and I would like my plans to be worked out my way. I don't want to have to wake up every morning to the grim reality of autism. I would rather have typically developing children experiencing normal bumps in the road...and thankfully I do have two of those.
If we think about it, God shielding us from every form of hardship would be like giving us chocolate cake for breakfast, lunch and dinner. Pretty tasty for sure, but in the end not desirable. God's answer to the sickness, and pain that was let into our world through sin was his son, Jesus and his sacrifice on our behalf is said to heal us from sin and its effects. Yet we still die, yes, we still have sick children, yes, but we forget that we are eternal beings...autism has reminded me over and over again of this. My reality doesn't just begin and end with my birth and death, nor with Scarlets sickness or healing. God has given me the gift of Jesus to guide me through the ravages of sin in our world. Sin and its effects, sickness, pain, abandonment, lonliness, will come in contact with me, but God through is Son, Jesus, gives me the strength to rise above its effects on my life. Sometimes I feel desperately, inconsolably sad when I watch my daughter hurt herself, or get made fun of, but when I run to my Jesus, his comfort is beyond anything I have ever tasted. It is far more desirable than the "chocolate cake" I thought I wanted in the first place. Communing with the divine, receiving his comfort and peace, knowing that he loves me, these things leave me startled. The way that I am constantly reminded to access them because of the very thing I detest in my life, is startling. Little reminders along the way that I matter to the Creator of the Universe is startling, thus the name of the blog.
Just like Skye can't understand where the moon is going to be, I can't always grasp that what I percieve as a tragedy is fine tuning my eternal trajectory. This place is not all there is. All of what I hope for will be met in another place. My reality isn't temporal, it is eternal and for me those glimpses of eternity are often directly related to the rending in my life from autism... Divinely startled.
Today was Scarlet's first day of Kindergarten. I don't know if she was confused about Halloween being so near, but it seems that she was trying to be a vampire and bit her EA on the neck....not such a great start. On the upswing, however, her temporary EA is a lovely girl from our church who was so excited to work with Scarlet...she may be feeling a little less excited and more, maybe, sore. At any rate, the special education assessment board happened to be at the school for a meeting right around the time Scarlet decided to jump on the current vampire bandwagon and were able to assess her. I am sure she got their attention. Stay tuned.
I apologize for the length of this post. I promise that I won't have the time to be so wordy in subsequent posts.
I can't say that I will ever know for certain, but I can tell you what I have worked through...
"Where's the moon?" asks Skye, my youngest. She has just discovered it in the sky and is fascinated by its existence. We are in the car doing errands and have just turned the corner so that the once visible moon is now directly behind us. "Where's the moon?" she asks again. "Behind us, baby" I answer. She doesn't understand. We turn the corner again and the moon is now on the opposite side of the car. "Look, another moon!" exults Skye in excited tones. "No, baby, that is the same moon it is just on the other side now." She doesn't understand how one thing can stay in the same place while our moving can change where it appears to be. I don't know when that concept is scheduled to click on in her brain, but it is certainly not today as we continue our dialogue about the moon for some time. Honestly, I am a little exasperated by the end of the drive, because she just can't understand and nothing I tell her helps.
The human brain is incredible. It's capacity for learning and reasoning is astonishing, but with all of its ability, there are still so many mysteries it has yet to unlock. So many things created in our world that it cannot recreate no matter how it tries. In fact it doesn't even know all the facts about the galaxy that we live in. We don't know for certain how many galaxies there are. We don't even know for certain how an atom gets its energy. I am reminded, by Skye's inability to comprehend the placement of the moon, that I am in a similar situation. I have only finite understanding of my life and even the universe that I live in. If the God who created the astounding design of this universe knows more about me and my life than I do, and if He is interested in my good, then perhaps there is something that I am just not getting....quite possible. "For God so loved the world that He gave his one and only Son that whoever believes in him will not perish but have eternal life" John 3:16. Sounds like God maybe wants to give me some good things.
What I do know, is that God did not create a world with pain and sickness in it. That was human kind's choice. I also know that if God gave us everything we wanted it would be about as good for us as giving chocolate cake to my son for every meal. The truth is, we don't always know or desire what is best. Everyone knows what a child is like who always gets his way, who is never allowed to fail, who is always made to think the world revolves around him. He or she ends up pretty useless. Why then do I feel indignant when God does not treat me the same way? I want everything to be perfect, especially for my children. I want to have it my way, I want an easy life, and I would like my plans to be worked out my way. I don't want to have to wake up every morning to the grim reality of autism. I would rather have typically developing children experiencing normal bumps in the road...and thankfully I do have two of those.
If we think about it, God shielding us from every form of hardship would be like giving us chocolate cake for breakfast, lunch and dinner. Pretty tasty for sure, but in the end not desirable. God's answer to the sickness, and pain that was let into our world through sin was his son, Jesus and his sacrifice on our behalf is said to heal us from sin and its effects. Yet we still die, yes, we still have sick children, yes, but we forget that we are eternal beings...autism has reminded me over and over again of this. My reality doesn't just begin and end with my birth and death, nor with Scarlets sickness or healing. God has given me the gift of Jesus to guide me through the ravages of sin in our world. Sin and its effects, sickness, pain, abandonment, lonliness, will come in contact with me, but God through is Son, Jesus, gives me the strength to rise above its effects on my life. Sometimes I feel desperately, inconsolably sad when I watch my daughter hurt herself, or get made fun of, but when I run to my Jesus, his comfort is beyond anything I have ever tasted. It is far more desirable than the "chocolate cake" I thought I wanted in the first place. Communing with the divine, receiving his comfort and peace, knowing that he loves me, these things leave me startled. The way that I am constantly reminded to access them because of the very thing I detest in my life, is startling. Little reminders along the way that I matter to the Creator of the Universe is startling, thus the name of the blog.
Just like Skye can't understand where the moon is going to be, I can't always grasp that what I percieve as a tragedy is fine tuning my eternal trajectory. This place is not all there is. All of what I hope for will be met in another place. My reality isn't temporal, it is eternal and for me those glimpses of eternity are often directly related to the rending in my life from autism... Divinely startled.
Today was Scarlet's first day of Kindergarten. I don't know if she was confused about Halloween being so near, but it seems that she was trying to be a vampire and bit her EA on the neck....not such a great start. On the upswing, however, her temporary EA is a lovely girl from our church who was so excited to work with Scarlet...she may be feeling a little less excited and more, maybe, sore. At any rate, the special education assessment board happened to be at the school for a meeting right around the time Scarlet decided to jump on the current vampire bandwagon and were able to assess her. I am sure she got their attention. Stay tuned.
I apologize for the length of this post. I promise that I won't have the time to be so wordy in subsequent posts.
Tuesday, September 8, 2009
Scarlet's Song
Broken wings
Can't break an angel smile.
Infinite possibility is just
playing peek-a-boo,
to those of us who
look through
love-colored glasses,
we see laughter flitting around
Capable, seeing eyes
Intermittenly hidden
By the gritty bars of
inaccessability. Of a
world with missconceptions
stamped in hard, unfittable
Molds...
Your beautiful breaks free
Surprising, like a firefly
lost in a blizzard
Shining bravely.
Reminding us that Spring
is the underdog
warming away the steely shell
of winter
one raindrop at a time,
Keeping her green hidden
until it is just the right hue.
So let me kiss
your sleeping eyes
Here in the silent
Eraser of night
Where peace softens over
the grimace of Childhood interupted.
Because kissing you
reminds me of when
You were first unwrapped
Wriggling flesh and voice strong
Gift from The Maker
Of good things.
Angel, you will fly
And I will stand to applaud you
Even as you sleep.
Can't break an angel smile.
Infinite possibility is just
playing peek-a-boo,
to those of us who
look through
love-colored glasses,
we see laughter flitting around
Capable, seeing eyes
Intermittenly hidden
By the gritty bars of
inaccessability. Of a
world with missconceptions
stamped in hard, unfittable
Molds...
Your beautiful breaks free
Surprising, like a firefly
lost in a blizzard
Shining bravely.
Reminding us that Spring
is the underdog
warming away the steely shell
of winter
one raindrop at a time,
Keeping her green hidden
until it is just the right hue.
So let me kiss
your sleeping eyes
Here in the silent
Eraser of night
Where peace softens over
the grimace of Childhood interupted.
Because kissing you
reminds me of when
You were first unwrapped
Wriggling flesh and voice strong
Gift from The Maker
Of good things.
Angel, you will fly
And I will stand to applaud you
Even as you sleep.
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