" A child has been born to us; God has given a son to us. He will be responsible for leading his people. His name will be Wonderful Counselor, Powerful God, Father who Lives Forever, Prince of Peace." Isaiah 9:6
Every Christmas, I try to take the time to be still and realize the enormity of the gift given to the world that first Christmas night. As I thought about Christmas and its aftershocks, aftershocks that are still reverberating in the year 2010, this verse came to mind. I know that Christmas is sooo much more than what it means to me in my limited time in space and my limited experience. But, in my limited experience, Christmas has rocked the world I live in. When I think of the words, "has been born to us" and "God has given" I can't dismiss the feeling of gratitude and incredulity. I always find a gift to be meaningful, but a gift of this magnitude, it is beyond me.
As I look through the ways that I have been divinely startled this year, I see a Wonderful Counsellor, a Powerful God, a Father Who Lives Forever, and mostly a Prince of Peace.
In fact, I do not know how I would have been able to make this journey without these attributes. There have been times, many times, when I have been up against a wall. It seems that a certain treatment has plateaued, or I don't know what to do with a certain behavior. I can tell you of several times that my heart has needed a counselor and how it has found Him. Thinking of just this year; I needed a new IBI provider. I asked my Counselor to guide me and three different people gave me the name of S.T.E.P.S. who couldn't have been a better fit for Scarlet. When looking for the next way to go in the diet area, God led me to the Specific carbohydrate diet through a friend and through the DAN doctor. This diet has led to several positive changes. When wondering if God has forsaken me, he reminds me that he will never leave me and nothing can separate me from his love. When wondering what next step to take with treatment, I was told by a fellow parent of a product called PCArx (A Chlatharation agent or chelating agent) When I began Scarlet on this product my DAN doctor did not know what to do with the detoxing showing up in her bloodstream. We have seen many positive changes with this product, even my DAN doctor is excited about it.
When I think about the Powerful God, I see his fingerprints everywhere. To see him bring beauty from the ashes of this disease speaks to the miraculous power he has to transform death to life. Paul and I wanted to get Scarlet a birthday present that would fit a $200 budget. Everyone had pooled their money, because Scarlet has not taken to lots of small gifts in the past..she finds it stressful. We wanted to get her a swing set, because we knew she would enjoy it. Long story short, God provided a brand new, from Rona, regularly $900, for $180 before taxes!!! I ask God every night to give Scarlet her words and to take this disease away from her. I know that he is the Powerful God, I have experienced it. It is perhaps the biggest tension of faith in this situation. I know that he can, I don't know if he will. No matter what, I have seen that his ways are right and good and beautiful.
The Father Who Lives Forever, is so significant to me, because my own daddy passed away almost ten years ago. There is nothing like running to your daddy and just letting him be strong for you, just getting lost in those big daddy arms and knowing that he is the strongest dad around and he is not going to let anything get to you. There have been some nights when I have just wanted my daddy! No one understood me like he did. On those nights, I hear another voice speaking to me. He reminds me that he loves me, created me, longs to hold me, sings songs over me. It is in the most discouraging, heart heavy days that I can still find big daddy arms that hold me. Arms that glisten with my tears and hold me tighter until my sobs have subsided. Then he takes me and looks me full in the face and tells me how much he loves me. My Father Who Lives Forever, never goes away and he watches out for me. I am his child. It is so profound, God sent his son to us to show us that he is our Father, because he knew that this would be a very important message to us... to me, 2010 years later in some obscure northern town.
Lastly, but certainly not finally as there are so many other names for God that have also been significant on this journey (Saviour, Lord, My Provider, The God who Sees, The All-sufficient One...) Lastly, the Prince of Peace has kept me wrapped up tightly in his safe house. I remember this most significantly right before Scarlet started school. I was beside myself with worry. Who was she going to get as an EA? Was she going to be able to function in the classroom? How much red tape was I going to have to wade through in order to get her the help that she needs? I was in such turmoil that I couldn't sleep. I couldn't let my baby be thrown to the wolves. Who knew what she would hear about her disabilities, who would tease her, who would underestimate her, who would tend to her safety. It was in these worries that the Prince of Peace raised his hand over my storm and said "peace, be still" He reminded me that I should "Cast all my cares on him because he cares for me" He reminded me to be "anxious in nothing, but by prayer and petition make my requests known to him". He reminded me that he has always taken care of me and Scarlet. I can not describe to you the peace that settled over my heart... it was supernatural and it hasn't left. Every time, I hear those nagging voices, I hear his voice saying "peace" and all is still again. And as if to confirm to me that all would be OK, he sent a lady from our church who knew about Scarlet to be her first EA.
"Then a very large group of angels from heaven joined the first angel, praising God and saying; 'Give glory to God in heaven and on earth let there be peace among the people who please God.'" Luke 2:13-14
I echo those words and say Thank you God for such a gift! Wonder Counsellor, Powerful God, The Father who Lives Forever, Prince of Peace.
Sunday, December 27, 2009
Wednesday, December 23, 2009
EEG Adventures in node placement
Scarlet was scheduled for her first EEG this Monday to rule out the possibility of siezures. She was having these strange "Spells" as my Mamaw would say. She would stare blankly, salivate excessively and look like she was choking. They would last for about 30 seconds before she would come back around. We were naturally concerned. She has displayed similar behaviour about a year ago for a brief period. This time the "spells" were also of a brief duration... about a week. The EEG results confirmed that she was not having any mini siezures. That was good news!! As to the mystery of the "spells", well for now we are still in the dark. I am just glad she has stopped having them.
I am always amazed by Scarlet's ability to endure medical procedures. She was such a little trooper. At first she quite liked it as the technician measured out her head and marked the appropriate places in red pencil. It was kind of like going the beauty parlor, a nice head message, a chatty lady, but her affiinity to this new kind of head message quickly abated when the glue and tape came out. Like so many things, it started out with wonderfully happy music in the background, a t.v. playing tree house non-stop, then the record warped and faces turned green.
These annoying little nodes had to be attached for a long period of time, 20 minutes to be exact. Mom and that pesky technician kept insisting that she could in no way touch or play with the nodes or attached wires. To make matters worse, there were nodes that had to be attached to the side of her face with glue and tape, those were exceptionaly irksome. It was at the attachment of the side-of-the-face nodes that Scarlet decided that she had indeed had enough. She wanted out and tree-house was no longer so interesting.
Note to anyone awaiting an EEG....if you complain enough, you get to have two t.v.s on. One playing Dora and the other playing some annoying little blue creatures. After some effort at removing the nodes, several attempts at which she proved successful, Scarlet succomed to the octopus of a mommy that held her arms tightly and convinced her that sitting still was a great option after all. She eventually agreed and gave us no more grief for the remainder of the 20 minutes.... I think someone must have been praying!
We will get the full results at our next doctors visit in the new year, but for now, I am glad that the glue washed out and that there are no more forseeable EEG's in our future (not to mention an absence of little blue creatures).
I am always amazed by Scarlet's ability to endure medical procedures. She was such a little trooper. At first she quite liked it as the technician measured out her head and marked the appropriate places in red pencil. It was kind of like going the beauty parlor, a nice head message, a chatty lady, but her affiinity to this new kind of head message quickly abated when the glue and tape came out. Like so many things, it started out with wonderfully happy music in the background, a t.v. playing tree house non-stop, then the record warped and faces turned green.
These annoying little nodes had to be attached for a long period of time, 20 minutes to be exact. Mom and that pesky technician kept insisting that she could in no way touch or play with the nodes or attached wires. To make matters worse, there were nodes that had to be attached to the side of her face with glue and tape, those were exceptionaly irksome. It was at the attachment of the side-of-the-face nodes that Scarlet decided that she had indeed had enough. She wanted out and tree-house was no longer so interesting.
Note to anyone awaiting an EEG....if you complain enough, you get to have two t.v.s on. One playing Dora and the other playing some annoying little blue creatures. After some effort at removing the nodes, several attempts at which she proved successful, Scarlet succomed to the octopus of a mommy that held her arms tightly and convinced her that sitting still was a great option after all. She eventually agreed and gave us no more grief for the remainder of the 20 minutes.... I think someone must have been praying!
We will get the full results at our next doctors visit in the new year, but for now, I am glad that the glue washed out and that there are no more forseeable EEG's in our future (not to mention an absence of little blue creatures).
Sunday, December 20, 2009
We are family
Most of us can identify with the bittersweet priveledge it is to grow up with a sibling. There is hardly a memory of my childhood that isn't colored with the blond hair and sly wit of my brother, Matthew. For the most part we were best of friends. He would oblidge me and let me practice my cheerleading stunts with him as long as I would play a round of hoops afterwards. We would spend hours working out routines with hangers just to put on a show. He was just my buddy. On occasion, he would display one of those pesky little brother sides and annoy me to the point of breaking. Often he would bring over friends that were annoying, friends that read my diary and talked in alien voices. Yet for all the fights we had in the back seat of the car on our way down to Alabama, there were ten other good memories.
I have often wondered how my other children will remember Scarlet. Brynn in particular. He is two years older than Scarlet, so he has been part of this journey with us. I know it is very unmotherly of me, but I often forget that autism has taken something away from him too. When Scarlet began to display symptoms of autism, he would very often take the brunt of a tantrum. He has been bitten, smacked, kicked, head-butted and ignored by his sister. It was hard for a then four year old to understand what autism is and how it has affected his sister. It is hard, when you are four to understand why your sister doesn't get the same kind of punishment for her actions. It is really hard to understand how her hitting is really her way of displaying affection. It is hard to have your mother's face always looking in her direction. How many of us grew up thinking that our parents really loved the other one better...everyone thinks that at one point or the other.
I have watched Brynn work through different levels of grief. He was at one point so angry with his sister that he never wanted to talk to her or have her around. Little by little as her world has begun opening up to us again, I have seen him bravely step back into the ring of sibling relationship. I say bravely, because he is risking bodily harm to engage her. He still often gets smacked and bitten. He cries, then he gets back up and walks back into the ring. It is something remarkable for me to watch. I can't relate. But I recognize in him, the same thing that motivates me...connection. When Brynn connects with his sister that was lost to him, it is a little victory. When he sees Scarlet shining out of her eyes again, and makes her laugh, or squeal with delight, he has just won the joust with austism. He is shaping up to be a brilliant jouster. When I watch this joust my eyes swell with tears for the brave little knight who doesn't yet fit his armor.
I have watched Skye as she hasn't known anything different from her sister. She still walks by Scarlet with her hands over her head so that she doesn't get knocked in the noggin'. I have walked in on her sitting in Scarlet's lap, saying, "Talk to me Scarlet, why don't you talk to me?" I have watched her take on the role of nurtrurer as she does little piggies with Scarlet's toes and frequently asks her if she is alright. She is often heard saying, "it's ok sweetheart". All is not good however, it seems she has taken to pushing Scarlet away in order not to get a "love tap". Whats a sibling without a little rivalry.
My babysitter told me that she hear Brynn defending his little sister from a curious friend from school. When the friend said, "Isn't it annoying that she can't talk?" He very passionately answered that he wasn't annoyed and they he loves her just the way she is. This is another way that I have been startled by autism. I am so thankful to God for the way he has helped my babes deal with the disfunction of autism and I pray for every day that God would be gracious to them and give them strength.
I have often wondered how my other children will remember Scarlet. Brynn in particular. He is two years older than Scarlet, so he has been part of this journey with us. I know it is very unmotherly of me, but I often forget that autism has taken something away from him too. When Scarlet began to display symptoms of autism, he would very often take the brunt of a tantrum. He has been bitten, smacked, kicked, head-butted and ignored by his sister. It was hard for a then four year old to understand what autism is and how it has affected his sister. It is hard, when you are four to understand why your sister doesn't get the same kind of punishment for her actions. It is really hard to understand how her hitting is really her way of displaying affection. It is hard to have your mother's face always looking in her direction. How many of us grew up thinking that our parents really loved the other one better...everyone thinks that at one point or the other.
I have watched Brynn work through different levels of grief. He was at one point so angry with his sister that he never wanted to talk to her or have her around. Little by little as her world has begun opening up to us again, I have seen him bravely step back into the ring of sibling relationship. I say bravely, because he is risking bodily harm to engage her. He still often gets smacked and bitten. He cries, then he gets back up and walks back into the ring. It is something remarkable for me to watch. I can't relate. But I recognize in him, the same thing that motivates me...connection. When Brynn connects with his sister that was lost to him, it is a little victory. When he sees Scarlet shining out of her eyes again, and makes her laugh, or squeal with delight, he has just won the joust with austism. He is shaping up to be a brilliant jouster. When I watch this joust my eyes swell with tears for the brave little knight who doesn't yet fit his armor.
I have watched Skye as she hasn't known anything different from her sister. She still walks by Scarlet with her hands over her head so that she doesn't get knocked in the noggin'. I have walked in on her sitting in Scarlet's lap, saying, "Talk to me Scarlet, why don't you talk to me?" I have watched her take on the role of nurtrurer as she does little piggies with Scarlet's toes and frequently asks her if she is alright. She is often heard saying, "it's ok sweetheart". All is not good however, it seems she has taken to pushing Scarlet away in order not to get a "love tap". Whats a sibling without a little rivalry.
My babysitter told me that she hear Brynn defending his little sister from a curious friend from school. When the friend said, "Isn't it annoying that she can't talk?" He very passionately answered that he wasn't annoyed and they he loves her just the way she is. This is another way that I have been startled by autism. I am so thankful to God for the way he has helped my babes deal with the disfunction of autism and I pray for every day that God would be gracious to them and give them strength.
Tuesday, December 8, 2009
An Addendum
Just a few updates on the Scarlet front, since my last post this evening was more venting than informing. Scarlet had what appeared to be seizures on and during our trip to Nashville. She has had these "spells" once or twice before, but they had stopped happening so I never looked into them. I took her to see Dr. Steffans and she has an EEG on December 21. I would appreciate prayers for that procedure.
Scarlet has started with her voice output device. She keeps asking for us to brush her hair. I don't know if she really wants that, or if it is just a convenient button.
I think Brynn is more excited about the device than anyone. He is constantly getting it out and asking her what she wants. Tonight at dinner she was quite upset and he ran into her room and got her Go Talk and said, now she can tell us what she wants. A wonderfully lady whose daughter is one of S.T.E.P.S. clients gave us the device to use as her daughter has outgrown it....such a beautiful gesture.
Scarlet very much enjoyed our recent trip to Nashville. She was so excited to go and see her Nana. It was neat to see her bond with her cousing Allyssa and Uncle Matt and Aunt Tara. I have a couple of great pics of her snuggled up with her cousin Allyssa watching princess dvds. She always love snuggles with Nana too.
Also, Paul and I have an interview about Scarlet on Huntley Street. We are filming live at 9:00 this Thursday (December 10), but it is also on CTV, and Global at different time slots througout the day. You can also view it at crossroads.ca
Scarlet has started with her voice output device. She keeps asking for us to brush her hair. I don't know if she really wants that, or if it is just a convenient button.
I think Brynn is more excited about the device than anyone. He is constantly getting it out and asking her what she wants. Tonight at dinner she was quite upset and he ran into her room and got her Go Talk and said, now she can tell us what she wants. A wonderfully lady whose daughter is one of S.T.E.P.S. clients gave us the device to use as her daughter has outgrown it....such a beautiful gesture.
Scarlet very much enjoyed our recent trip to Nashville. She was so excited to go and see her Nana. It was neat to see her bond with her cousing Allyssa and Uncle Matt and Aunt Tara. I have a couple of great pics of her snuggled up with her cousin Allyssa watching princess dvds. She always love snuggles with Nana too.
Also, Paul and I have an interview about Scarlet on Huntley Street. We are filming live at 9:00 this Thursday (December 10), but it is also on CTV, and Global at different time slots througout the day. You can also view it at crossroads.ca
Beauty is beastly
I have, of late, had a love hate relationship with the Disney princesses. What! the Disney princesses???? How can anyone hate them? I was eagerly awaiting the day I could dress up a co-operative child, after having a boy first... He was not into the girly things at all...its a good thing. When I had Scarlet, I went looking for all kinds of princess/fairy dress up gear. I couldn't wait for girl dress-up. Spider man and Batman were admittedly fun, but now, Now I was going to have a Cinderella around. Scarlet loves the princesses, Ariel being her decided favorite, but its just that as I am getting to know the princesses better, I am not so sure that I like them.
It could be that Snow White rather joyously proclaimed "Dreams can come true!" right as I was searching Scarlet's room for any more visible signs of feces....it was one of those, found Scarlet with number two all over her hands and face and room kind of moments....I can't say I appreciated Snow White's enthusiasm or conviction.
At other times, I have snuggled in with Scarlet to read her a princess book and thought, as I read "The End", that it would be hard for any normal girl to live up to those expectations, let alone a girl with autism. My little princess doesn't have any kind words, she can't clean up any one's messes, her dancing skills are not impressive, she doesn't know how to cook, and she will probably never have a handsome prince to sweep her off her feet and marry her. She does like to dress up though .... one for ten.
The princess sing-a-long songs are Scarlet's favorite thing to watch. I find myself humming Colors of the Wind and Kiss the Girl more frequently than is proper for a grown woman. It is guaranteed that at our house there will be 30 minutes a day devoted to those glowing, singing princesses. Scarlet squeals with delight when they sing to her...I think they are her friends. I don't want to take them away from her, but sometimes I wonder how "All your dreams will come true" and just wait for the handsome prince, he'll make it better is helping the situation at hand.
I have been thinking allot about living in a place that is unfulfillment. What I mean is living in a place that is undesirable. A place that there seems no way out of. A place that will likely not improve. A place like autism. There are princesses in this place, but they dress in only comfortable clothing and those dreadful, comfortable, but downright ugly shoes. Their beauty is unconventional, but it shines from their eyes if you know how to look.
It is a paradigm that most people in the West are not forced into. Here in the west it is quite possible for people to find a way out of grinding poverty, improve their circumstances, find cures for what ails them. It is likely that if you are having a low point in your life, that things will eventualy improve... but what if they can't improve? What if they never do? I could be wrong, but I think the Disney princesses wouldn't be able to handle this reality.
Before you think me a spoil sport, pragmatic and austere, you should know that I would rather be caught in a Science fiction novel, be swept away by Shakespeare, watch ballet, and watch a good romantic comedy than most anything. Perhaps my overactive imagination needed something more firm to contemplate. At any rate, I see no desireable way to live in a place called autism without Jesus. It is too grinding to wake up to its reality without knowing that someday, it will not exist. Because Jesus was born with humanity wrapped around him, because he lived sinlessly, because he took my punishment so that I could enter his heaven someday, because not even death could hold him, I know that in The End of my book, there will be a smile on my face.
So, I will pray that Scarlet knows her heart should be the most beautiful thing about her. I will try to teach her that contentment in the middle of something unchangeable is more valuable than a diamond tiara. I will push her to keep trying to reach new goals because giving up is worse than an evil stepmother. I will teach her to dream about a place where no sickness or tears exist. And I will alway leave room for a miracle ...because our God specializes in them.
Thus ends my diatribe on the princesses! Maybe tomorrow, I will like them a little more.
It could be that Snow White rather joyously proclaimed "Dreams can come true!" right as I was searching Scarlet's room for any more visible signs of feces....it was one of those, found Scarlet with number two all over her hands and face and room kind of moments....I can't say I appreciated Snow White's enthusiasm or conviction.
At other times, I have snuggled in with Scarlet to read her a princess book and thought, as I read "The End", that it would be hard for any normal girl to live up to those expectations, let alone a girl with autism. My little princess doesn't have any kind words, she can't clean up any one's messes, her dancing skills are not impressive, she doesn't know how to cook, and she will probably never have a handsome prince to sweep her off her feet and marry her. She does like to dress up though .... one for ten.
The princess sing-a-long songs are Scarlet's favorite thing to watch. I find myself humming Colors of the Wind and Kiss the Girl more frequently than is proper for a grown woman. It is guaranteed that at our house there will be 30 minutes a day devoted to those glowing, singing princesses. Scarlet squeals with delight when they sing to her...I think they are her friends. I don't want to take them away from her, but sometimes I wonder how "All your dreams will come true" and just wait for the handsome prince, he'll make it better is helping the situation at hand.
I have been thinking allot about living in a place that is unfulfillment. What I mean is living in a place that is undesirable. A place that there seems no way out of. A place that will likely not improve. A place like autism. There are princesses in this place, but they dress in only comfortable clothing and those dreadful, comfortable, but downright ugly shoes. Their beauty is unconventional, but it shines from their eyes if you know how to look.
It is a paradigm that most people in the West are not forced into. Here in the west it is quite possible for people to find a way out of grinding poverty, improve their circumstances, find cures for what ails them. It is likely that if you are having a low point in your life, that things will eventualy improve... but what if they can't improve? What if they never do? I could be wrong, but I think the Disney princesses wouldn't be able to handle this reality.
Before you think me a spoil sport, pragmatic and austere, you should know that I would rather be caught in a Science fiction novel, be swept away by Shakespeare, watch ballet, and watch a good romantic comedy than most anything. Perhaps my overactive imagination needed something more firm to contemplate. At any rate, I see no desireable way to live in a place called autism without Jesus. It is too grinding to wake up to its reality without knowing that someday, it will not exist. Because Jesus was born with humanity wrapped around him, because he lived sinlessly, because he took my punishment so that I could enter his heaven someday, because not even death could hold him, I know that in The End of my book, there will be a smile on my face.
So, I will pray that Scarlet knows her heart should be the most beautiful thing about her. I will try to teach her that contentment in the middle of something unchangeable is more valuable than a diamond tiara. I will push her to keep trying to reach new goals because giving up is worse than an evil stepmother. I will teach her to dream about a place where no sickness or tears exist. And I will alway leave room for a miracle ...because our God specializes in them.
Thus ends my diatribe on the princesses! Maybe tomorrow, I will like them a little more.
Monday, November 23, 2009
A Picture Is Worth A Thousand Words
Zehrs has, I am sure, seen many a strange things. The wonderful people who work in the photo studio have lots of experience. Even with all the people they see, they seem to remember us as we make our yearly trek in search of a viable family picture. One of those pictures with a rosy glow emanating from the paper. You know the stuff memories are made of. The kind you send to Grandma and Grandpa so they can show off all the cute grandchildren. Um.... I think I need to readjust my picture expectations.
You see, no matter how co-ordinated we are, no matter how perfectly groomed, autism still seems to rip through the picture. Autism does not like to look at the camera or that annoying quacking duck. Autism has seen a very interesting spot on the wall beside it. Forget the status quo. Smiling is for those less interested in the minutia around them. It is for those who don't find sitting down in one place a concerted effort. It is clearly for those with a group mentality.
I don't know why I have come to terms with the presence of autism in every other aspect of my daily life, but find it so shocking when it is present in the family pictures. I guess it only reaffirms the death of a dream... its kind of like seeing a cousin that you haven't seen in a year and they have grown so much you don't recognize them. Not taking a family picture for a year, seeing the changes in everyone, except the child with autism, it makes the reality slap. It is probably a little vanity too. I want people to look at my children and say “O my gosh, look how cute they are”. There is no denying, Scarlet is a cutie, but she always has that pose that makes people think, there is something not quite right there. In fact that is the truth. A picture is worth a thousand words, I am just not liking the story today. Paul is always very quiet after family pictures. I use to wonder what was wrong. Now, I know, he doesn't like the story either.
On a more positive note, it seems that Scarlet is on her way to getting a voice output device. Our meeting with speech therapist, liason from the Children's Treatment Network and our therapists from S.T.E.P.S. Has led us to the begining of the journey toward implementing said device. In fact, another family that S.T.E.P.S. works with has a beginning device that they might be able to lend us. I am looking forward to this new step in her journey.
Tuesday, November 17, 2009
Postvirus survival mode
We spent the last two weeks fighting the battle of H1N1 (Or as I like to call it Hone None). I alone was uninfected. Have you ever seen that movie where the monkeys give humans a horrible airborne virus...Dustin Hoffman, and his estranged wife fight to cure all mankind. I think we could have done the sequel at our house. I could see the clear plastic partitions hanging from the ceilings in my childrens rooms as cries of "mom, WATER!!!!!" and other not so desirable sounds came from different parts of the house. As if the fevers were not enough, they were at some times accompanied by nausea and its cousin the Vomit. I won't mention the other cousin, but he came to visit too. The hacking, nonstop cough came nagging into my conciousness at every waking and sleeping moment. (I am sure it must have been a woman who had been up all night with coughing children who first invented Chinese water torture.) I have fought the battle of Hone None, been tortured at the hands of incessant cough. I am still a little jumpy...is there a counselling service for such things?
At any rate, we have passed the worst part and now everyone is limping bandaged from the smoke covered battlefield. The most frustrating part of this (besides the Hone None coughing torture) is that it has caused a regression in Scarlet. Anyone who has an autistic child will confirm that sickness usually does this. We have been fighting this past year and a half to rid Scarlet from the rather major viral overload that was present in her body two years ago. Most autistic children have such suppressed immune systems that they have a hard time dealing with the onslaught of viruses that they have been sent their way. (that in itself is another topic and quite controversial...maybe I will tackle it when I feel less jittery.)
When we first took Scarlet into her DAN doctor and had her blood analyzed under a microscope, it was very disturbing. Among other things, the Strep virus was floating around like a chain. I was quite upset when I found out what "that chain looking thing" actually was. We have been doing several things to help Scarlet's body fight off the viruses that she couldn't get rid off. Almost imediately after starting the Specific Carbohydrate Diet, her blood began to improve and we have seen steady changes in her as we have helped her body heal from the inside out. It is frustrating to have her come so far only to see a virus seemingly wipe those gains away. I am sure that I am being a little fatalistic, probably post traumatic Hone None syndrome, but I feel like screaming NOOOOOOOOOOOO!!!!
Scarlet just had her permanent EA assigned to her today, Her name is Nicole. Nicole went home early with a black eye and a bite on her arm.... I hope she is there on Thursday! Among those things lost in the current regression is tollerance. She is tantruming more and hurting herself at will.
On a lighter note, I am meeting with a Speech Therapist and Augmentative Communication Direction at Childrens Treatment Network along with a couple of therapists from S.T.E.P.S. to discuss getting Scarlet started on a voice output device. First Scarlet has to qualify, then if a committee deems her elligible she is put on a wait list for funding. I have been told this wait list is minimal...hopefully it is. I will know more tommorrow, but S.T.E.P.S. has been forming her therapy around getting such a device. It would allow Scarlet to talk through a computer. It starts with simple things like yes and no and moves up to more advanced communication. I know most Mommy's don't like the word "no" especially if they have a two year old at home, but it is such a powerful word. I would like to hear Scarlet's "no's"
At any rate, we have passed the worst part and now everyone is limping bandaged from the smoke covered battlefield. The most frustrating part of this (besides the Hone None coughing torture) is that it has caused a regression in Scarlet. Anyone who has an autistic child will confirm that sickness usually does this. We have been fighting this past year and a half to rid Scarlet from the rather major viral overload that was present in her body two years ago. Most autistic children have such suppressed immune systems that they have a hard time dealing with the onslaught of viruses that they have been sent their way. (that in itself is another topic and quite controversial...maybe I will tackle it when I feel less jittery.)
When we first took Scarlet into her DAN doctor and had her blood analyzed under a microscope, it was very disturbing. Among other things, the Strep virus was floating around like a chain. I was quite upset when I found out what "that chain looking thing" actually was. We have been doing several things to help Scarlet's body fight off the viruses that she couldn't get rid off. Almost imediately after starting the Specific Carbohydrate Diet, her blood began to improve and we have seen steady changes in her as we have helped her body heal from the inside out. It is frustrating to have her come so far only to see a virus seemingly wipe those gains away. I am sure that I am being a little fatalistic, probably post traumatic Hone None syndrome, but I feel like screaming NOOOOOOOOOOOO!!!!
Scarlet just had her permanent EA assigned to her today, Her name is Nicole. Nicole went home early with a black eye and a bite on her arm.... I hope she is there on Thursday! Among those things lost in the current regression is tollerance. She is tantruming more and hurting herself at will.
On a lighter note, I am meeting with a Speech Therapist and Augmentative Communication Direction at Childrens Treatment Network along with a couple of therapists from S.T.E.P.S. to discuss getting Scarlet started on a voice output device. First Scarlet has to qualify, then if a committee deems her elligible she is put on a wait list for funding. I have been told this wait list is minimal...hopefully it is. I will know more tommorrow, but S.T.E.P.S. has been forming her therapy around getting such a device. It would allow Scarlet to talk through a computer. It starts with simple things like yes and no and moves up to more advanced communication. I know most Mommy's don't like the word "no" especially if they have a two year old at home, but it is such a powerful word. I would like to hear Scarlet's "no's"
Monday, November 2, 2009
Something on the horizon
There seem to be so many changes lately that I can hardly keep up with them in my blogging time. There seems to be an awakening in Scarlet lately. I found out today from her therapists that she knows some of her colors; purple, pink, and white. Now aren't those just the colors you would suppose a girl would want to know first! I am not surprised that she knows things like this, just taken back when she reveals it. I have always known that Scarlet is alot more aware and competent than people give her credit for, but to have her show it astounds me... it makes me want to say, "See, I wasn't wrong, she really is in there!"
Last night when I was tucking her into bed, I was giving her our bedtime kiss routine, an eskimo kiss, a butterfly kiss, and a mommy kiss (this is usually just a kiss on the cheek). After I kissed her on the cheek, she looked up at me and pulled her little head up to mine, then she planted a kiss firmly on my mouth! Then she smiled and giggled because I made such a big deal of it. My little girl who was lost to the world, gave me a kiss and knew why she was doing it! I am really looking forward to hearing her say "I love you, Mom" someday, but I think that was a close second.
A few days ago, Scarlet started chanting the words "go, go, go" over and over again. She has been making several different sounds lately. Her babbling is actually starting to sound like parts of words. When she started saying "go" I wondered what we usually paired the word "go" with around our house. Then I realized that it was usually associated with the bathroom. "Let's go to the potty, washroom, etc" is usually repeated twice an hour throughout the course of a day. When I said to her, "Scarlet do you need to go potty", she said "go, go, go, go, ptty" Then she said it again. I took her and she had to go! Other times she has said "go, go, go" and paired it with her washroom sign!
This developement is tantamount! The very thing causing her the most angst lately has been toileting because she wants so much to be trained. If she has an accident she is unconsolable for a while and usually becomes oppositional about the washroom for the rest of the day which just escalates things because it leads to other accidents. If she could have the power of telling us when she needs to go, instead of depending on us to take her every 45 minutes it would change her life. To see these requests for the potty emerging, even if they are irregular is so positive!
On Halloween night, I was offering her some treats that were compliant with her very strict diet. I had some ice cream and a bar made out of nuts and dried fruits. I assumed the ice cream would be her favorite, so I gave her some of that first and then as an afterthought included her "Lara bar". After one bite of her Lara Bar she kept pointing to it every time I tried to feed her some ice cream. She has never done that before!
Tonight at supper, I asked Scarlet if she wanted a drink. She shook her head yes!
I think that I am seeing land on the horizon. I hope as our ship gets closer that it is an inhabitable place full of life!
Every night I pray over Scarlet. I say "God, I know that you have made the heavens and everything in them. I know that nothing is too difficult for you. I know that I am nobody really, but you have made me your child through your spectacular grace. I just want you to know that I know you can do it. I am not going to quit asking because you are the only one I can go to. Just wanted to remind you that quietly and hopefully, I trust you. - Amen"
Last night when I was tucking her into bed, I was giving her our bedtime kiss routine, an eskimo kiss, a butterfly kiss, and a mommy kiss (this is usually just a kiss on the cheek). After I kissed her on the cheek, she looked up at me and pulled her little head up to mine, then she planted a kiss firmly on my mouth! Then she smiled and giggled because I made such a big deal of it. My little girl who was lost to the world, gave me a kiss and knew why she was doing it! I am really looking forward to hearing her say "I love you, Mom" someday, but I think that was a close second.
A few days ago, Scarlet started chanting the words "go, go, go" over and over again. She has been making several different sounds lately. Her babbling is actually starting to sound like parts of words. When she started saying "go" I wondered what we usually paired the word "go" with around our house. Then I realized that it was usually associated with the bathroom. "Let's go to the potty, washroom, etc" is usually repeated twice an hour throughout the course of a day. When I said to her, "Scarlet do you need to go potty", she said "go, go, go, go, ptty" Then she said it again. I took her and she had to go! Other times she has said "go, go, go" and paired it with her washroom sign!
This developement is tantamount! The very thing causing her the most angst lately has been toileting because she wants so much to be trained. If she has an accident she is unconsolable for a while and usually becomes oppositional about the washroom for the rest of the day which just escalates things because it leads to other accidents. If she could have the power of telling us when she needs to go, instead of depending on us to take her every 45 minutes it would change her life. To see these requests for the potty emerging, even if they are irregular is so positive!
On Halloween night, I was offering her some treats that were compliant with her very strict diet. I had some ice cream and a bar made out of nuts and dried fruits. I assumed the ice cream would be her favorite, so I gave her some of that first and then as an afterthought included her "Lara bar". After one bite of her Lara Bar she kept pointing to it every time I tried to feed her some ice cream. She has never done that before!
Tonight at supper, I asked Scarlet if she wanted a drink. She shook her head yes!
I think that I am seeing land on the horizon. I hope as our ship gets closer that it is an inhabitable place full of life!
Every night I pray over Scarlet. I say "God, I know that you have made the heavens and everything in them. I know that nothing is too difficult for you. I know that I am nobody really, but you have made me your child through your spectacular grace. I just want you to know that I know you can do it. I am not going to quit asking because you are the only one I can go to. Just wanted to remind you that quietly and hopefully, I trust you. - Amen"
Saturday, October 31, 2009
Nothing Compares reprise
So I have been up to my ears with potty training these last few weeks. We have been training Scarlet since the summer and quite frequently, Skye will jump on the bandwagon. It has been very interesting around my house lately as I have been bouncing from one accident to the other. Potty training a special needs child has been a far bigger task than I ever imagined. I feel rather determined to do it since the specialist who diagnosed her said she would never be potty trained! I am trying to keep this blog real....so, I have composed, or rather re-written a song. I needed to add a bit of humor. If you have long past the point of potty training and would rather it remain a far distant memory, then just skip this blog. If you are relatively near a potty training experience, then perhaps this song is just the thing you need. If you have never had the pleasure of living through a potty training experience then you might find my reference to bodily fluids a bit over the top...to you I apologize and ask you to venture no farther on the page. To the rest, may this resonate! It is to the tune of Sinead O'Connor's song, "Nothing Compares To You"....
It's been seven months and twenty days
Since I took all the diapers away OOOOOOO
Since they've been gone it can flow wherever it wants
It can hide in corners of rooms
We're stayin' away from fancy restaurants
Stayin away from curtains and couches too
Cause nothin'
I said nothin' compares
Nothin' compares to poo
We go out and I'm nervous
When I stay in, I wait,
For a tell-tale sign or two OOOOO
Nothin' can stop me as I yell "wait!" "wait!"
"Just keep on holdin' it in!!"
I think I'm faster now than when I was eighteen
But it's been months of living on the edge
I keep talkin' to the therapists and guess what they told me
Guess what they told me
They said don't go back to diapers, girl, whatever you do
It's just so cruel
Cause nothin compares
Nothin' compares to poo
All the undies that I'm washing, mama, in the laundry room
Aren't going to go away!
I know that potty trainin', baby, is sometimes hard
So I hope it ends real soon
Cause
Nothin' compares
Nothin' compares
Nothin' compares
Nothin' compares
to poo.
It's been seven months and twenty days
Since I took all the diapers away OOOOOOO
Since they've been gone it can flow wherever it wants
It can hide in corners of rooms
We're stayin' away from fancy restaurants
Stayin away from curtains and couches too
Cause nothin'
I said nothin' compares
Nothin' compares to poo
We go out and I'm nervous
When I stay in, I wait,
For a tell-tale sign or two OOOOO
Nothin' can stop me as I yell "wait!" "wait!"
"Just keep on holdin' it in!!"
I think I'm faster now than when I was eighteen
But it's been months of living on the edge
I keep talkin' to the therapists and guess what they told me
Guess what they told me
They said don't go back to diapers, girl, whatever you do
It's just so cruel
Cause nothin compares
Nothin' compares to poo
All the undies that I'm washing, mama, in the laundry room
Aren't going to go away!
I know that potty trainin', baby, is sometimes hard
So I hope it ends real soon
Cause
Nothin' compares
Nothin' compares
Nothin' compares
Nothin' compares
to poo.
Tuesday, October 13, 2009
I saw the sign!
There are times, with an autistic child, that all the daily trudging up and up some uncharted mountain pays off. Days when an unexpected rainbow surrounds the summit. Days when you know it was worth it to take the hard way up. Today was one of those days. And let me first say that today's particular summit was reached with significant help from my fabulous S.T.E.P.S therapists. (Our current in-home IBI providers, Ashley, Jenn, Natalie, Shawna, Deanna and Laura)
To appreciate this particular summit, to feel the exhilaration and to know the profound sense of achievement I need to explain the journey. I promise it will not be the documentary version...a quick pan through the last few years will do the trick. Scene begins in a living room, with a little blond, curly headed Scarlet screaming and thrashing, banging her head. No one knows why, there is little to do but wait out the tantrum and hope that it ends soon. I try to only respond or give Scarlet what she wants if she is attempting some sort of verbal sound. I can not keep up to the demand that this method takes and give up trying. A year later, same little cutie, just taller pulling out her hair in frustration. She is far removed from her world. It is my full time job just to engage her, to keep her in touch with her reality instead of pulling out her hair and looking out of the window. Therapists come to our house and try to teach her to communicate what she needs by pulling pictures off a page and handing them to me. I know Scarlet is capable of more than this, but they tell me this is the only option. Several months later, Scarlet is requesting familiar food items using the pictures at nursery school and the Achimota center, but finds it hard to incorporate into daily life at home.
Several months later, we feel a change in Scarlet's therapy is needed. We pray. God sends three different people to us with the name of S.T.E.P.S. We love the positive attitudes of Deanna and Laura the ladies who run S.T.E.P.S. We love that they can see a side of Scarlet that few can. We know they are a good fit. They send their therapists Shawna, Natalie, Jenn, and Ashley to our house every day for months. They teach Scarlet her first signs eat and drink, then bread. These signs are repeated several times a day with prompts like: show me eat, show me drink, or what do you want? Scarlet then responds with the appropriate signs. When Scarlet starts to sign the first time for eat all by herself we are at the grocery store in the produce section.... It was the first time since Scarlet lost her words that she had been able to communicate her thoughts to me. Three years of silence, then an "eat" sign....wait that was a summit but there is a bigger one coming.
Tonight at the dinner table, Scarlet was furious. She was kicking and crying and banging her head and refusing to eat anything but green beans. She was spitting out everything that I tried to feed her. She clearly had a strong aversion to supper. Once I realized that she was trying to communicate that she didn't like what we were having to eat, I calmed her down and told her that I would make her a sandwich. I took supper, ground it up and added mayonnaise then put it in her bread for a sandwich. She loved her sandwich and gobbled up three helpings. I had run out of bread, so I didn't give her any more. I figured she was done. That is when Scarlet came up to me slapped her hands together in her "bread" sign and SAID "Bread". I screamed and jumped and make all kinds of ruckus. She jumped up and down and squealed with delight that I had understood her. We had a celebration!!! A fresh, mountain air, lofty mountain peak, It-was- worth-every-step-of-the-climb kind of celebration. I think I even yodeled!
"Every good and perfect gift is from above, coming down from the Father of heavenly lights, who does not change like shifting shadows." James 1:17
Thank you, Jesus
To appreciate this particular summit, to feel the exhilaration and to know the profound sense of achievement I need to explain the journey. I promise it will not be the documentary version...a quick pan through the last few years will do the trick. Scene begins in a living room, with a little blond, curly headed Scarlet screaming and thrashing, banging her head. No one knows why, there is little to do but wait out the tantrum and hope that it ends soon. I try to only respond or give Scarlet what she wants if she is attempting some sort of verbal sound. I can not keep up to the demand that this method takes and give up trying. A year later, same little cutie, just taller pulling out her hair in frustration. She is far removed from her world. It is my full time job just to engage her, to keep her in touch with her reality instead of pulling out her hair and looking out of the window. Therapists come to our house and try to teach her to communicate what she needs by pulling pictures off a page and handing them to me. I know Scarlet is capable of more than this, but they tell me this is the only option. Several months later, Scarlet is requesting familiar food items using the pictures at nursery school and the Achimota center, but finds it hard to incorporate into daily life at home.
Several months later, we feel a change in Scarlet's therapy is needed. We pray. God sends three different people to us with the name of S.T.E.P.S. We love the positive attitudes of Deanna and Laura the ladies who run S.T.E.P.S. We love that they can see a side of Scarlet that few can. We know they are a good fit. They send their therapists Shawna, Natalie, Jenn, and Ashley to our house every day for months. They teach Scarlet her first signs eat and drink, then bread. These signs are repeated several times a day with prompts like: show me eat, show me drink, or what do you want? Scarlet then responds with the appropriate signs. When Scarlet starts to sign the first time for eat all by herself we are at the grocery store in the produce section.... It was the first time since Scarlet lost her words that she had been able to communicate her thoughts to me. Three years of silence, then an "eat" sign....wait that was a summit but there is a bigger one coming.
Tonight at the dinner table, Scarlet was furious. She was kicking and crying and banging her head and refusing to eat anything but green beans. She was spitting out everything that I tried to feed her. She clearly had a strong aversion to supper. Once I realized that she was trying to communicate that she didn't like what we were having to eat, I calmed her down and told her that I would make her a sandwich. I took supper, ground it up and added mayonnaise then put it in her bread for a sandwich. She loved her sandwich and gobbled up three helpings. I had run out of bread, so I didn't give her any more. I figured she was done. That is when Scarlet came up to me slapped her hands together in her "bread" sign and SAID "Bread". I screamed and jumped and make all kinds of ruckus. She jumped up and down and squealed with delight that I had understood her. We had a celebration!!! A fresh, mountain air, lofty mountain peak, It-was- worth-every-step-of-the-climb kind of celebration. I think I even yodeled!
"Every good and perfect gift is from above, coming down from the Father of heavenly lights, who does not change like shifting shadows." James 1:17
Thank you, Jesus
Wednesday, October 7, 2009
Sepia toned moments
Seems like I am always blogging out my frustrations, so I decided to blog out some happiness today. This week has been a relatively calm week filled with little achievements.
Little moments that make time stand still in a sepia toned slow motion before color starts blurring in fast motion all around. I love those time stand still moments. Its like being in a movie with the soft lense on a shot of particular emotional import and hearing the director yell "it's a take!" Not that I have ever been on a movie set and hear a director say those things, but I can imagine it feels much the same.
This week Scarlet has seemed so alive. There is more sparkle to her eyes and more mischief in her smile. She has just learned how to hold a cup up to her mouth and make sounds. She loves the distortion on the sound from the cup. I found her playing with a little green cup this week and I laughed at her. She thought it was funny that I would laugh at her and she likes making people laugh. When I told her to show her Daddy her funny cup noises, she put her cup up to her mouth and made her sounds then looked proudly around the room. For a moment she was Jerry Seinfeld and we were the audience laughing at her jokes.
Scarlet has a big white teddy bear on her bed. This teddy bear has recently become a real favorite of hers. I have heard her laughing in her room and walked in to see her holding her teddy bear. This is one of the few times I have seen her play appropriately with a toy! Imagine my delight as she said "Tedydy dydydy Bear" yesterday. It became her word of choice for the day. She was so proud of herself and looked up at me with a huge smile when I celebrated her achievement. Here's hoping it is a word she can find every day.
"Book,book, book", she says every night for a month at bedtime. She loves reading books. It is next in her heart only to bathtime. I am so elated that "book" has become a regular word that she has been using consitantly. She is so cute in her pajamas running around repeating book, book, book.
"Roar! I am a hungry Lion" I say as I lumber around the living room on all fours. Scarlet looks strangely at me as if seeing me do such a thing for the first time. She giggles. Nice, belly giggles that fill a room full of bubbles. When I reach for her to gobble her up she breaks out in peels of laughter. I am seen impersonating lions very frequently these days.
School is going well and Scarlet looks forward to going to school every "B" day. Her teacher is going to have Scarlet teach her classroom sign language, so that her peers can comunicate with her.
Scarlet fell, slippery socks on hard wood floors are like raisins with ground beef...not a great combination. Scarlet cries out right away and burries her head in my chest for comfort. She wants to stay with me and let me make a fuss over her. She acutally milks the moment a task usually undertaken by her sister. This is huge!!!!! This is the girl that often doesn't acknowledge pain. To acknowledge it, cry out for comfort, and to want that comfort to continue....it's huge!
Brynn kisses my face as I read him "The Horse and His Boy", he tells me that he loves me. Skye trips around the house like an elf looking for her Little People and asking to color. I find her coloring Scarlet's legs and pants and shirt as she declares that she can color on people. These little moments are like gumballs laid out on a trail through the forest. They make the journey worth taking.
Little moments that make time stand still in a sepia toned slow motion before color starts blurring in fast motion all around. I love those time stand still moments. Its like being in a movie with the soft lense on a shot of particular emotional import and hearing the director yell "it's a take!" Not that I have ever been on a movie set and hear a director say those things, but I can imagine it feels much the same.
This week Scarlet has seemed so alive. There is more sparkle to her eyes and more mischief in her smile. She has just learned how to hold a cup up to her mouth and make sounds. She loves the distortion on the sound from the cup. I found her playing with a little green cup this week and I laughed at her. She thought it was funny that I would laugh at her and she likes making people laugh. When I told her to show her Daddy her funny cup noises, she put her cup up to her mouth and made her sounds then looked proudly around the room. For a moment she was Jerry Seinfeld and we were the audience laughing at her jokes.
Scarlet has a big white teddy bear on her bed. This teddy bear has recently become a real favorite of hers. I have heard her laughing in her room and walked in to see her holding her teddy bear. This is one of the few times I have seen her play appropriately with a toy! Imagine my delight as she said "Tedydy dydydy Bear" yesterday. It became her word of choice for the day. She was so proud of herself and looked up at me with a huge smile when I celebrated her achievement. Here's hoping it is a word she can find every day.
"Book,book, book", she says every night for a month at bedtime. She loves reading books. It is next in her heart only to bathtime. I am so elated that "book" has become a regular word that she has been using consitantly. She is so cute in her pajamas running around repeating book, book, book.
"Roar! I am a hungry Lion" I say as I lumber around the living room on all fours. Scarlet looks strangely at me as if seeing me do such a thing for the first time. She giggles. Nice, belly giggles that fill a room full of bubbles. When I reach for her to gobble her up she breaks out in peels of laughter. I am seen impersonating lions very frequently these days.
School is going well and Scarlet looks forward to going to school every "B" day. Her teacher is going to have Scarlet teach her classroom sign language, so that her peers can comunicate with her.
Scarlet fell, slippery socks on hard wood floors are like raisins with ground beef...not a great combination. Scarlet cries out right away and burries her head in my chest for comfort. She wants to stay with me and let me make a fuss over her. She acutally milks the moment a task usually undertaken by her sister. This is huge!!!!! This is the girl that often doesn't acknowledge pain. To acknowledge it, cry out for comfort, and to want that comfort to continue....it's huge!
Brynn kisses my face as I read him "The Horse and His Boy", he tells me that he loves me. Skye trips around the house like an elf looking for her Little People and asking to color. I find her coloring Scarlet's legs and pants and shirt as she declares that she can color on people. These little moments are like gumballs laid out on a trail through the forest. They make the journey worth taking.
Saturday, October 3, 2009
grocery store mayhem
The Bible talks of entertaining angels unaware... I may have entertained a few angels in my time...I don't know for sure. It is more likely that I have had some human angels come to my rescue from time to time and last week was no exception. Time and time again, I have been taught just how much God uses his people to be his hands and feet to me. It reminds me that I need to call or send flowers, or just pop in and see the people that I have been thinking about. It may be that I am supposed to be the answer to their prayers that day. I know that the "body" of Christ, his church, has litterally been God's hand to me in various places at various times.
Take Maddison Bugeja for instance, a fourteen year old girl who loves Scarlet, who takes her during church and helps her to integrate into her woods program so that I can have a break during church. Jessica Schaale, Amanda Enz, and Nancy Alves have also said, let me take her for a while...and they do it with happiness... Sometimes they fight over who gets to be with Scarlet. That is a very unheard of situation!!! Most churches can't accomodate people with needs like Scarlet.
Last week I was in the grocery store. I had to have a few items to get supper and breakfast done the next day. I could not leave without the items I needed. It was at this store that Scarlet began tantruming in the frozen foods aisle of the health food section. Let me describe a Scarlet freak-out. It always involves yelling, rather loudly. She throws herself down on the floor and tries to bang her head on anthing in sight, she bites herself and anyone else within biting distance, she hits herself on her head and face with the palm of her hands, she kicks and thrashes. As you can imagine I felt a bit conspicuous as I was trying to keep her from injuring herself and keep from getting injured myself. It is rather humorous now looking back at the situation. I had Skye in the buggy too. She thought that this was something fun that we should do in the grocery store, so she started to scream at the top of her lungs too! I don't think there was a person in that store who didn't know we were there.
Usually I can calm Scarlet after a few minutes, but she was inconsolable. After what seemed like several minutes a brave stranger ventured down our aisle and asked if she could help. What a refreshing person she was. She tried to distract Skye who was managing to wriggle out of her seat belt in the buggy. After a bit she left and Scarlet started again. After a few moments more of insanity, I removed Scarlet's shoes. She was wearing a new pair and it was the only other thing I could think of that might be causing her tantrum. She stopped as soon as I took her shoes off. Obviously she didn't like that pair (I found out later this week it was because they were size 9 when in actuality she wears an 11 1/2...not my finest mommy moment)
Now when an autistic child has had a tantrum of that magnitude, another one can be just under the surface at any moment. I was practically running to the eggs aisle with a Scarlet in her sock feet and a Skye still trying to stand in the buggy. When I we made our way to check out it was one of those dreadful situations in which all the aisle were lined up and I didn't know how to avert the inevitable next tantrum as Scarlet hates standing in line almost as much as she hates those shoes I forced on her feet. I sort of felt like waving at everyone because I felt like people were saying, O that's the noisy family... I wanted to take out my beauty pageant wave, but I had to hold Scarlet's hand while pushing the buggy with a very shift two-year old balanced precariously inside. It was at this moment that I almost heard angels singing... and no, it wasn't a Celine Dion song... it was the face of Donna Rauws coming toward me with purpose in her step.
It seems that Donna had heard us in the store as she was checking out....she must have amazingly keen ears:-) She took her groceries to her car and came back in to find me. She came at just the right time! I almost cried tears of relief, because I was also running late to pick up Brynn at school, but another trip to the store was not possible that day. Donna took Scarlet for a walk up and down the aisles, they looked at the puppy dogs and kittens on the toilet paper, Scarlet was as happy as a lark. She knows Donna from church programs in which Donna has been her teacher and was just happy to be walking with her. At times like these I know that God doesn't have to, but often he does, send people to me just to let me know that he sees me. He may not change my circumstances, but he lets me know that he is standing inside of the fire with me so that I don't get burned....and Donna was that message to me. So once again, like so many other times, I was divinely startled. Thank you, Donna for listening! I guess it is time for me to be calling those people I have been thinking about this week.
Take Maddison Bugeja for instance, a fourteen year old girl who loves Scarlet, who takes her during church and helps her to integrate into her woods program so that I can have a break during church. Jessica Schaale, Amanda Enz, and Nancy Alves have also said, let me take her for a while...and they do it with happiness... Sometimes they fight over who gets to be with Scarlet. That is a very unheard of situation!!! Most churches can't accomodate people with needs like Scarlet.
Last week I was in the grocery store. I had to have a few items to get supper and breakfast done the next day. I could not leave without the items I needed. It was at this store that Scarlet began tantruming in the frozen foods aisle of the health food section. Let me describe a Scarlet freak-out. It always involves yelling, rather loudly. She throws herself down on the floor and tries to bang her head on anthing in sight, she bites herself and anyone else within biting distance, she hits herself on her head and face with the palm of her hands, she kicks and thrashes. As you can imagine I felt a bit conspicuous as I was trying to keep her from injuring herself and keep from getting injured myself. It is rather humorous now looking back at the situation. I had Skye in the buggy too. She thought that this was something fun that we should do in the grocery store, so she started to scream at the top of her lungs too! I don't think there was a person in that store who didn't know we were there.
Usually I can calm Scarlet after a few minutes, but she was inconsolable. After what seemed like several minutes a brave stranger ventured down our aisle and asked if she could help. What a refreshing person she was. She tried to distract Skye who was managing to wriggle out of her seat belt in the buggy. After a bit she left and Scarlet started again. After a few moments more of insanity, I removed Scarlet's shoes. She was wearing a new pair and it was the only other thing I could think of that might be causing her tantrum. She stopped as soon as I took her shoes off. Obviously she didn't like that pair (I found out later this week it was because they were size 9 when in actuality she wears an 11 1/2...not my finest mommy moment)
Now when an autistic child has had a tantrum of that magnitude, another one can be just under the surface at any moment. I was practically running to the eggs aisle with a Scarlet in her sock feet and a Skye still trying to stand in the buggy. When I we made our way to check out it was one of those dreadful situations in which all the aisle were lined up and I didn't know how to avert the inevitable next tantrum as Scarlet hates standing in line almost as much as she hates those shoes I forced on her feet. I sort of felt like waving at everyone because I felt like people were saying, O that's the noisy family... I wanted to take out my beauty pageant wave, but I had to hold Scarlet's hand while pushing the buggy with a very shift two-year old balanced precariously inside. It was at this moment that I almost heard angels singing... and no, it wasn't a Celine Dion song... it was the face of Donna Rauws coming toward me with purpose in her step.
It seems that Donna had heard us in the store as she was checking out....she must have amazingly keen ears:-) She took her groceries to her car and came back in to find me. She came at just the right time! I almost cried tears of relief, because I was also running late to pick up Brynn at school, but another trip to the store was not possible that day. Donna took Scarlet for a walk up and down the aisles, they looked at the puppy dogs and kittens on the toilet paper, Scarlet was as happy as a lark. She knows Donna from church programs in which Donna has been her teacher and was just happy to be walking with her. At times like these I know that God doesn't have to, but often he does, send people to me just to let me know that he sees me. He may not change my circumstances, but he lets me know that he is standing inside of the fire with me so that I don't get burned....and Donna was that message to me. So once again, like so many other times, I was divinely startled. Thank you, Donna for listening! I guess it is time for me to be calling those people I have been thinking about this week.
Saturday, September 19, 2009
Playgrounds and Plans
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.
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.
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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