Today marks three years since the day that my baby girl was diagnosed with Autism. It is a birthday of sorts. This is the day that my family started becoming exactly who and what we are supposed to be.
In the three years since our world started to fall apart, my husband and I have tried to help it along at least 10,000 times. Having a child with special needs puts a strain on a marriage like nothing else. In addition to all the normal, day in and day out worries that a marriage endures, we also have to worry about fighting with insurance companies; disagreeing with school districts, teachers, therapists and anyone else who comes along and thinks that they know our child better than us; whether our "typical " child is getting enough attention and if not how do we fix that; and where in the world is the money going to come from that we need for the interventions that we KNOW are going to help? Add all that to "What exactly is a date again?" and you have a recipe for disaster.
We have been there so many times that I can tell you exactly what the bottom of the barrel looks like, smells like and feels like. It is burned into my memory and I pray that I never forget any of those things. It is those memories that have FINALLY propelled us forward. We have gotten so tired of screaming at each other and each blaming the other one for our pain that there was nowhere to go but up. We have finally invited God into our marriage. Not just to be there for each of us when something goes wrong. God is actually in the middle, binding us together tighter than we have ever been before. Inviting Him in and making Him the third (and most vital) part of our relationship has changed the way that we deal with each other and, I think, even the way that we see each other.
Do we still fall apart on a regular basis? Absolutely, but during those times, the other one of us is a bit more able to not take a bad day so personally. I admit that my husband is much better at this than I am. His change in dealing with hurt feelings has come quite dramatically. Mine, well, let's just say that God is working on me a little more slowly. My change has come more from understanding that when a man responds in a way that is contrary to the way that I thought he should have responded, it is not to confound me. He is who he is. He is a man and men are different than women (thank you, Lord!).
Our kids are reaping the benefits. Everyone has unclenched a little and home is a better place to be. My girls are finally seeing a good model of a wife and they are learning exactly what to look for in a man.
Are we finished? No way. Are we better able to face what's coming? No doubt. And now that God is a permanent member of the family we look forward to what's ahead!
Sunday, March 8, 2009
Friday, December 12, 2008
Potty Training Success!!!!!!
Praise God, we are almost completely potty trained!
If there was one thing I was putting off over and over again it has been potty training my sweet girl. I would get motivated and begin with training panties. But after a day of crying (Charlie) and a little yelling (I'm sorry to admit, me) I would convince myself that she just wasn't ready. I guess I thought there would be this magical moment when Charlie would come and get me by the hand and indicate that it was time. Not exactly.
Beginning at age 3 I would bring out the potty seat and let Charlie get a good look at it. I wanted it to become a fixture in her life so that there would be no fear around it. So I took it in the bathroom and even put it in her room and in the living room sometimes. I tried putting her on the potty when I went to the bathroom thinking that she would see what was happening and want to emulate. Nope. I thought that with it in her room with all her toys and books that she would sit and relax and nature would take it's course. Nope. I thought that if I put it in the living room in front of one of her favorite "Elmo" movies that she would sit and forget about why she was there and that with time on my side eventually she would "accidentally" go potty. Then I could make a huge fuss cementing the idea that this was a good thing. Nope, nope, nope. Even at three years old, and then later at four, she was way too smart for me. She knew exactly what I was asking of her and there was no way that she was going to lose her "control". So we began the start and stop dance of me bringing out the potty and making her sit on it while she wailed until I either became so unnerved by the screaming or (to be honest) go so tired of the effort it required that the potty would go back in a closet until I was inspired once again.
Cut to our last year in preschool. Charlie is in a class with "typical" kids and has been since she started school at almost 3. She is expected and required to do everything that the other kids do. This has worked remarkably well for us as Charlie has had no choice to assimilate. Her teachers are aware of her limitations and have made allowances when necessary but 95% of the time helps are not needed. The pull-up issue was not really an issue until this year as she moved to a "big kid" class. Everyone in her new class was either completely potty trained or almost there. I was very concerned that her use of pull-ups would reinforce the distinction among the kids that she is different from them. Her teachers understood this and were fully on board with Charlie wearing panties to class 100% of the time and dealing with the consequences. I just wasn't entirely sure that I was ready to deal with the consequences at home.
After an initial orientation time to get Charlie used to all the changes that come with a new year and a new classroom (and a few illnesses thrown in for good measure) in November we went completely pull-upless at school. I was so full of anxiety I can't even say. I was so worried that failure at this would cause Charlie a set back in self-esteem. And I was more than a little afraid that she might be made fun of for having accidents. Boy was I wrong. The other kids barely noticed what was going on with Charlie. Even through the days where she held it for hours and then screamed in pain. One day, she held it so long that she had no choice but to let it come and her teachers ran her to bathroom in an effort to get some in the potty. I was informed that she went for a long time but expressed her anger through the entire thing.
I was sending four outfits to school at a time along with special treats that she could be given when she had a success. But to no avail. She just would not (or could not) cooperate and make it to the potty in time.
I had not yet gone to panties full time at home. Life was getting in the way and I was unsure what to do when I took her out to her other appointments. Go back to pullups then or take her in panties? I was worried this would confuse her or cause her to hold it until we left the house. But eventually I knew that I had to go all the way. In early November, I steeled myself and decided I was fully prepared to take this on. We were going to wear panties all day, deal with the accidents in a calm manner and then at night she could wear "sleeping panties".
The two weeks that followed were a blur of visits to the potty every 10 minutes and cleaning up every manner of bathroom accidents. Charlie would hold everything through all her appointments outside of the house and through our trip to the potty on returning home. Then, she would promptly find a spot in my living room and let er rip. And through the puddles and piles, I would calmly say "uh-oh, this goes in the potty" and we would go to the bathroom and get cleaned up. If there was any of her effort in her panties I would empty it into the potty and have her look. I would tell her again "poo-poo goes in the potty" and then she would flush it. We even got in the habit of saying "bye-bye poo-poo" as we watched it go down.
Then one day, a light shone down from above, the angels sang and all was right with the world. Charlie went to the bathroom on one of her scheduled breaks and all the planets aligned! She pee-peed in the potty! And I have to say that I have never seen that child so proud of herself. She was beaming! We danced and sang and had ourselves a little party. We called everyone we knew and bragged on our accomplishment. She picked whatever treat she wanted and all was right with the world. It just took that long for her to put all the pieces in the right order in her head.
Following this there were a handful of accidents and poo-poo is taking a bit longer but now, fully 6 weeks later, we no longer have any wet accidents. Often Charlie is holding her BMs and going as soon as her sleeping panties are put on but we are having a measure of success with this also now. She is even coming to me and telling me "potty!" when she needs to go. So amazing! This has translated over to school and to her appointments outside of the house as well as long as I don't expect her to sit on a big potty without a potty seat covering it. That fear of falling in is a powerful thing!
With each year that went by that we were still using diapers, I despaired a little more that we were always going to stick out like a sore thumb. There is not much more apparent than the one 5 year old in the group who is wearing a diaper. But after tackling this head on and remaining calm and matter-of-fact no matter what I had to clean up, Charlie overcame what has been said to be one of the greatest obstacles of Autism. I have never been so proud. And more importantly, Charlie has never been so proud of herself!
If there was one thing I was putting off over and over again it has been potty training my sweet girl. I would get motivated and begin with training panties. But after a day of crying (Charlie) and a little yelling (I'm sorry to admit, me) I would convince myself that she just wasn't ready. I guess I thought there would be this magical moment when Charlie would come and get me by the hand and indicate that it was time. Not exactly.
Beginning at age 3 I would bring out the potty seat and let Charlie get a good look at it. I wanted it to become a fixture in her life so that there would be no fear around it. So I took it in the bathroom and even put it in her room and in the living room sometimes. I tried putting her on the potty when I went to the bathroom thinking that she would see what was happening and want to emulate. Nope. I thought that with it in her room with all her toys and books that she would sit and relax and nature would take it's course. Nope. I thought that if I put it in the living room in front of one of her favorite "Elmo" movies that she would sit and forget about why she was there and that with time on my side eventually she would "accidentally" go potty. Then I could make a huge fuss cementing the idea that this was a good thing. Nope, nope, nope. Even at three years old, and then later at four, she was way too smart for me. She knew exactly what I was asking of her and there was no way that she was going to lose her "control". So we began the start and stop dance of me bringing out the potty and making her sit on it while she wailed until I either became so unnerved by the screaming or (to be honest) go so tired of the effort it required that the potty would go back in a closet until I was inspired once again.
Cut to our last year in preschool. Charlie is in a class with "typical" kids and has been since she started school at almost 3. She is expected and required to do everything that the other kids do. This has worked remarkably well for us as Charlie has had no choice to assimilate. Her teachers are aware of her limitations and have made allowances when necessary but 95% of the time helps are not needed. The pull-up issue was not really an issue until this year as she moved to a "big kid" class. Everyone in her new class was either completely potty trained or almost there. I was very concerned that her use of pull-ups would reinforce the distinction among the kids that she is different from them. Her teachers understood this and were fully on board with Charlie wearing panties to class 100% of the time and dealing with the consequences. I just wasn't entirely sure that I was ready to deal with the consequences at home.
After an initial orientation time to get Charlie used to all the changes that come with a new year and a new classroom (and a few illnesses thrown in for good measure) in November we went completely pull-upless at school. I was so full of anxiety I can't even say. I was so worried that failure at this would cause Charlie a set back in self-esteem. And I was more than a little afraid that she might be made fun of for having accidents. Boy was I wrong. The other kids barely noticed what was going on with Charlie. Even through the days where she held it for hours and then screamed in pain. One day, she held it so long that she had no choice but to let it come and her teachers ran her to bathroom in an effort to get some in the potty. I was informed that she went for a long time but expressed her anger through the entire thing.
I was sending four outfits to school at a time along with special treats that she could be given when she had a success. But to no avail. She just would not (or could not) cooperate and make it to the potty in time.
I had not yet gone to panties full time at home. Life was getting in the way and I was unsure what to do when I took her out to her other appointments. Go back to pullups then or take her in panties? I was worried this would confuse her or cause her to hold it until we left the house. But eventually I knew that I had to go all the way. In early November, I steeled myself and decided I was fully prepared to take this on. We were going to wear panties all day, deal with the accidents in a calm manner and then at night she could wear "sleeping panties".
The two weeks that followed were a blur of visits to the potty every 10 minutes and cleaning up every manner of bathroom accidents. Charlie would hold everything through all her appointments outside of the house and through our trip to the potty on returning home. Then, she would promptly find a spot in my living room and let er rip. And through the puddles and piles, I would calmly say "uh-oh, this goes in the potty" and we would go to the bathroom and get cleaned up. If there was any of her effort in her panties I would empty it into the potty and have her look. I would tell her again "poo-poo goes in the potty" and then she would flush it. We even got in the habit of saying "bye-bye poo-poo" as we watched it go down.
Then one day, a light shone down from above, the angels sang and all was right with the world. Charlie went to the bathroom on one of her scheduled breaks and all the planets aligned! She pee-peed in the potty! And I have to say that I have never seen that child so proud of herself. She was beaming! We danced and sang and had ourselves a little party. We called everyone we knew and bragged on our accomplishment. She picked whatever treat she wanted and all was right with the world. It just took that long for her to put all the pieces in the right order in her head.
Following this there were a handful of accidents and poo-poo is taking a bit longer but now, fully 6 weeks later, we no longer have any wet accidents. Often Charlie is holding her BMs and going as soon as her sleeping panties are put on but we are having a measure of success with this also now. She is even coming to me and telling me "potty!" when she needs to go. So amazing! This has translated over to school and to her appointments outside of the house as well as long as I don't expect her to sit on a big potty without a potty seat covering it. That fear of falling in is a powerful thing!
With each year that went by that we were still using diapers, I despaired a little more that we were always going to stick out like a sore thumb. There is not much more apparent than the one 5 year old in the group who is wearing a diaper. But after tackling this head on and remaining calm and matter-of-fact no matter what I had to clean up, Charlie overcame what has been said to be one of the greatest obstacles of Autism. I have never been so proud. And more importantly, Charlie has never been so proud of herself!
Saturday, October 4, 2008
In the eye of the storm
I had a dream last night when I finally fell asleep. I was stuck in the ocean not terribly far from land - I could see it but I couldn't seem to get there. Both of my girls were in the water with me but our positions were different. Charlie, my 4 year old, who has autism, was stuck in the center of a whirlpool that kept going at different speeds. My 8 year old, Geneveive and I were outside of the center but close to Charlie. Close enough to see her and at times when the waters were calm we were close enough to touch her. Sometimes the waters at the center were calm and Charlie floated along. Other times, the water churned and she moved further away from us. At those times I could see her moving away but no matter how hard I tried I couldn't swim fast enough to get to her. And to try harder to get to Charlie I had to leave Genevieve outside the circle of moving water where I knew that she would be safe, but alone.
As I moved closer I could get my hands onto Charlie but I could never get her fully into my arms. I tried harder and harder but I was just not strong enough. Each time the water pulled her away I screamed and fought harder but it didn't help. I had to wait and let the water move me along closer to her. Each time I would look back to see where Genevieve was. I could see her but I was yelling at her to stay where she was - where she could get to land by herself if she needed to.
When I would look toward land I would see my husband standing there watching us. Every now and then he would wave and call out but I couldn't hear what he was saying. Sometimes, when the winds died down and the waters calmed he would swim out and tell me that I needed a break. He would tell me to swim toward land. But I couldn't. My body would not let me go. I knew that he wouldn't be there long enough for me to rest and get my strength back. Each time I tried to get away I would come right back. I never made it anywhere near land because everytime the waters got choppy again I swam straight back to them. As soon as I came anywhere near, my husband would swim away and climb back out on dry land. We would watch his back as he faded out of sight and then turn our attention to the storm raging around us.
I felt like there was nothing I could do for either one of my precious girls. My only goal was to get them both back onto dry land but I could not get to them both at the same time. I just wasn't strong enough. The only option was to take one at a time and I could not leave one behind to take the other first. I fought and fought through the same thing all night long until I finally woke completely exhausted and frantic.
I could not shake this image all day long. My thoughts never strayed from it. This is what my life is like. Trying as hard as I can to keep my precious baby out of the eye of the storm while still making sure that my other daughter, my beautiful, firstborn, wonderful daughter is safe from what is going on in our lives. And trying to camoflague those goings on as much as possible so that she can still feel as though there is something in her life that is "normal".
The cold, honest truth of this is that sometimes the pain is excruciating - almost unbearable. There are never enough tears to cry, never enough anger to express to get it out of your system, never enough safe moments or safe people to let it all go. Sometimes it feels as though it will eat me alive. Like the need to heal Charlie will consume me and everyone around me until there is nothing left of any of us. I love these girls with a fire that I could never have expected, with a passion that keeps me going long after I feel that my body has given out. What keeps me getting out of bed in the morning is knowing that the waters will calm again. I will get close enough to grab ahold of my baby again and I will reach out and bring us all three together again. We will love each other more and hold each other tighter than the time before until we are no longer pulled apart by the water's force. We will hold on tight and not let go until we reach land - together.
As I moved closer I could get my hands onto Charlie but I could never get her fully into my arms. I tried harder and harder but I was just not strong enough. Each time the water pulled her away I screamed and fought harder but it didn't help. I had to wait and let the water move me along closer to her. Each time I would look back to see where Genevieve was. I could see her but I was yelling at her to stay where she was - where she could get to land by herself if she needed to.
When I would look toward land I would see my husband standing there watching us. Every now and then he would wave and call out but I couldn't hear what he was saying. Sometimes, when the winds died down and the waters calmed he would swim out and tell me that I needed a break. He would tell me to swim toward land. But I couldn't. My body would not let me go. I knew that he wouldn't be there long enough for me to rest and get my strength back. Each time I tried to get away I would come right back. I never made it anywhere near land because everytime the waters got choppy again I swam straight back to them. As soon as I came anywhere near, my husband would swim away and climb back out on dry land. We would watch his back as he faded out of sight and then turn our attention to the storm raging around us.
I felt like there was nothing I could do for either one of my precious girls. My only goal was to get them both back onto dry land but I could not get to them both at the same time. I just wasn't strong enough. The only option was to take one at a time and I could not leave one behind to take the other first. I fought and fought through the same thing all night long until I finally woke completely exhausted and frantic.
I could not shake this image all day long. My thoughts never strayed from it. This is what my life is like. Trying as hard as I can to keep my precious baby out of the eye of the storm while still making sure that my other daughter, my beautiful, firstborn, wonderful daughter is safe from what is going on in our lives. And trying to camoflague those goings on as much as possible so that she can still feel as though there is something in her life that is "normal".
The cold, honest truth of this is that sometimes the pain is excruciating - almost unbearable. There are never enough tears to cry, never enough anger to express to get it out of your system, never enough safe moments or safe people to let it all go. Sometimes it feels as though it will eat me alive. Like the need to heal Charlie will consume me and everyone around me until there is nothing left of any of us. I love these girls with a fire that I could never have expected, with a passion that keeps me going long after I feel that my body has given out. What keeps me getting out of bed in the morning is knowing that the waters will calm again. I will get close enough to grab ahold of my baby again and I will reach out and bring us all three together again. We will love each other more and hold each other tighter than the time before until we are no longer pulled apart by the water's force. We will hold on tight and not let go until we reach land - together.
Monday, June 9, 2008
I don't know how you do it
The one thing that people say to me more than any other when they find out that I have a child with Autism is "I don't know how you do it." This has always puzzled me.
I have (since I had children of my own) looked at others with more children than I and said the very same words. I have looked at single moms going to work every day for hours and then coming home to more hours of work and thought " I could never!" I have had friends and acquaintences lose a spouse and be left with very small children and all the pain that situation brings and thought "I can't even imagine." But I have never, ever, stepped back and looked back on my own situation and thought "I can't possibly do this."
For a long time every time I heard the words "I don't know how you do it" come out of another's mouth I was offended. Often I took it to mean that that they thought that I had lost the lottery. I had somehow gotten damaged goods. Most of the time the pitying look that came along with the statement sent me off to a corner somewhere, licking my wounds and wishing that I had never shared this piece of my life with this person. In those moments I felt as though I had betrayed Charlie. I felt that I had shared a piece of her precious history with someone who had missed the point completely.
As time has gone on I have gotten used to the response and can even tell when the person is forming the phrase in their head before I even get the full sentence out of my mouth. "My daughter has Autism." I see the shock and the grasping for the right words. I see the fear. Yes, the fear. The fear that somehow this could touch them in a way tfor which they are unprepared. The fear that knowing someone who has Autism or someone who loves a child with Autism can somehow reach out and wrap it's evil arms around them and steal all that they hold dear. Sometimes, I feel as though I need to present a disclaimer before I actually make the statement. "Prepare yourself now. I am about to tell you something that has been known to make grown men weep and the strongest of women faint." But now I realize that people have no idea what to say. There is no "right" answer. And in answering out of their fear and shock they say words that they don't really mean.
I think that the strangest part of the comment to me is that it somehow implies that I have a choice in the matter. A choice as to whether or not I love my child fully. A choice as to whether or not I give her everything that I have to give and then a bit more. A choice to be fully present in her life or to keep her at arm's length. Let me share with you the complelte and whole truth of my reality with BOTH my girls: I would not have missed this ride for the world. I have learned more about my own strength and weaknesses than I ever wanted to know. I have learned more about the committment made from one sister to another - even when the other sister is still just a baby herself. And I have learned more about love than I ever could have hoped or dreamed possible. And not movie love, not the kind that wraps itself up in a neat and tidy package at the end of two hours and a bucket of popcorn. But the kind of love that NEVER gives up, the the kind of love that can take any beating and still come back for more. Begs for more in fact.
Now if God were to take me back to the beginning, to the days of sweet smelling newborns and complete exhaustion, and He told me that I could make the choice - Autism or no - I can't tell you that I would make the right choice. That's why I am here to say now that I am so glad that He made the choice for me. Because, my goodness, if I had missed this child, her sister with her and all the pain and joy that has come from caring for, loving and knowing her the way I do, I would have missed everything.
I have (since I had children of my own) looked at others with more children than I and said the very same words. I have looked at single moms going to work every day for hours and then coming home to more hours of work and thought " I could never!" I have had friends and acquaintences lose a spouse and be left with very small children and all the pain that situation brings and thought "I can't even imagine." But I have never, ever, stepped back and looked back on my own situation and thought "I can't possibly do this."
For a long time every time I heard the words "I don't know how you do it" come out of another's mouth I was offended. Often I took it to mean that that they thought that I had lost the lottery. I had somehow gotten damaged goods. Most of the time the pitying look that came along with the statement sent me off to a corner somewhere, licking my wounds and wishing that I had never shared this piece of my life with this person. In those moments I felt as though I had betrayed Charlie. I felt that I had shared a piece of her precious history with someone who had missed the point completely.
As time has gone on I have gotten used to the response and can even tell when the person is forming the phrase in their head before I even get the full sentence out of my mouth. "My daughter has Autism." I see the shock and the grasping for the right words. I see the fear. Yes, the fear. The fear that somehow this could touch them in a way tfor which they are unprepared. The fear that knowing someone who has Autism or someone who loves a child with Autism can somehow reach out and wrap it's evil arms around them and steal all that they hold dear. Sometimes, I feel as though I need to present a disclaimer before I actually make the statement. "Prepare yourself now. I am about to tell you something that has been known to make grown men weep and the strongest of women faint." But now I realize that people have no idea what to say. There is no "right" answer. And in answering out of their fear and shock they say words that they don't really mean.
I think that the strangest part of the comment to me is that it somehow implies that I have a choice in the matter. A choice as to whether or not I love my child fully. A choice as to whether or not I give her everything that I have to give and then a bit more. A choice to be fully present in her life or to keep her at arm's length. Let me share with you the complelte and whole truth of my reality with BOTH my girls: I would not have missed this ride for the world. I have learned more about my own strength and weaknesses than I ever wanted to know. I have learned more about the committment made from one sister to another - even when the other sister is still just a baby herself. And I have learned more about love than I ever could have hoped or dreamed possible. And not movie love, not the kind that wraps itself up in a neat and tidy package at the end of two hours and a bucket of popcorn. But the kind of love that NEVER gives up, the the kind of love that can take any beating and still come back for more. Begs for more in fact.
Now if God were to take me back to the beginning, to the days of sweet smelling newborns and complete exhaustion, and He told me that I could make the choice - Autism or no - I can't tell you that I would make the right choice. That's why I am here to say now that I am so glad that He made the choice for me. Because, my goodness, if I had missed this child, her sister with her and all the pain and joy that has come from caring for, loving and knowing her the way I do, I would have missed everything.
Thursday, March 20, 2008
GFCF diet
My 4 yo daughter has been on the Gluten Free and Casein Free diet for almost a year now. Actually to call her GFCF doesn't really scratch the surface. She is really free of gluten (protein found in wheat, barley, rye and depsending on who you ask, oats), casein (the protein found in dairy products, corn (yes all corn included the ever present corn syrup), eggs, soy, nitrites, nitrates, artificial colors, artificial flavors, MSG and bananas. I also have to limit the amounts of phenols that she gets. This includes apples, berries, tomatoes - all her favorites. This has been one of the hardest interventions that I have put in place for her - but I also want to say that it has been one of the most worthwhile.
In Oct of 2006, right around when Charlie was turning three, I found some information on the GFCF diet and thought that it might be worth it to try it. But the more I read the more I was afraid of it. Just thinking about taking out these things from her diet made me nervous. At the time she was subsisting mainly on a diet of goldfish crackers, chicken nuggets, saltines, etc - all loaded with gluten. I talked to her new pediatrician and he told me "please don't do this." I was still not convinced and started looking for gluten free products in my local health food stores.
To say that these items were not met with great happiness in my home is an understatement. No one liked them. My husband thought I was crazy. And the more I realized how hard this was going to be the more I thought that this was one thing that I was not going to try. I gave up and went on with other things.
Then in March of 2007 the diet started popping up again. I came across a book I had gotten in October, “Special Diets for Special Kids” by Lisa Lewis. I sat down and actually finished it this time. Then I found “Unraveling the Mystery of Autism and Pervasive Developmental Disorder” by Karen Seroussi. After reading these two books I was feeling like this was something that I SHOULD try. I kept thinking that the worst that could happen was that it wouldn’t work and we would go back to eating the way we did before. The best case scenario was that we would see some, any, results!
Then during spring break I noticed that Charlie seemed to be regressing more. She was not interested in any contact with anyone. We had set up a tent in the living room for a sleepover that Genevieve, Charlie’s sister had with her cousin and Charlie would not come out. She also would not let anyone in. Then she started the screaming. That wonderful sound that we refer to around here as the “ice pick”. I noticed that she was eating more corn chips than usual at that time. I knew that popcorn was an issue for her b/c when she ate it she would scream for hours and her diapers were awful. She would get the most horrible diaper rashes I had ever seen. Her skin was literally eaten through. I would load her up on ibuprophen and infants gas drops after she had gotten some popcorn and promise myself and her that she would never get any of that again. I finally put two and two together and decided that when gluten and casein went so would corn.
The more I considered it the more information seemed to fall into my lap. Every book that I picked up on Autism mentioned this diet. I walked into a group therapy session with Charlie and one of the other mothers and a therapist were discussing it! It was everywhere around me. God was saying to me “How long are you going to hold out when it is right here in front of you?” Sold. I thought about the things that they had talked about in these books and couldn’t find any reason not to try. I was not really looking forward to it but I knew it was time.
I started taking out things that contained gluten in April of 2007 and replacing them with gluten free items. Charlie was not interested in most of them. It took a lot of time (up to 10 months!) for her to try certain things. Mostly in the beginning we got by with fruit. I was lucky that fruit was something she almost always wanted. Meals were meats and vegetables with rice or potatoes or rice pasta. I also found some cookies that she would eat. Enjoy Life brand saved my life!
Those early days were so hard. I remember a time when I sat down and cried over ketchup! There were so many times that I felt like giving up. But I am glad that we didn’t. Over time I noticed more eye contact, more language, more interaction and most of all - - LESS SCREAMING!!!!!!! Hallelujah! My baby wasn’t hurting as much anymore and she was happier for it. She was able to do so many of the things that she wsan’t able to do before. We could play together, she was enjoying her time in therapy even more and over all our house was a happier place. But everyone has noticed the difference in her.
It took so much time to learn how to track down the ingredients that were affecting her. Even now, almost a year later, I am still finding things that are offending her. But every second has been worth it. I would not go back to how things were for anything in the world. I have tried may interventions for Charlie and this diet is definitely one of the top two things that have helped her.
In Oct of 2006, right around when Charlie was turning three, I found some information on the GFCF diet and thought that it might be worth it to try it. But the more I read the more I was afraid of it. Just thinking about taking out these things from her diet made me nervous. At the time she was subsisting mainly on a diet of goldfish crackers, chicken nuggets, saltines, etc - all loaded with gluten. I talked to her new pediatrician and he told me "please don't do this." I was still not convinced and started looking for gluten free products in my local health food stores.
To say that these items were not met with great happiness in my home is an understatement. No one liked them. My husband thought I was crazy. And the more I realized how hard this was going to be the more I thought that this was one thing that I was not going to try. I gave up and went on with other things.
Then in March of 2007 the diet started popping up again. I came across a book I had gotten in October, “Special Diets for Special Kids” by Lisa Lewis. I sat down and actually finished it this time. Then I found “Unraveling the Mystery of Autism and Pervasive Developmental Disorder” by Karen Seroussi. After reading these two books I was feeling like this was something that I SHOULD try. I kept thinking that the worst that could happen was that it wouldn’t work and we would go back to eating the way we did before. The best case scenario was that we would see some, any, results!
Then during spring break I noticed that Charlie seemed to be regressing more. She was not interested in any contact with anyone. We had set up a tent in the living room for a sleepover that Genevieve, Charlie’s sister had with her cousin and Charlie would not come out. She also would not let anyone in. Then she started the screaming. That wonderful sound that we refer to around here as the “ice pick”. I noticed that she was eating more corn chips than usual at that time. I knew that popcorn was an issue for her b/c when she ate it she would scream for hours and her diapers were awful. She would get the most horrible diaper rashes I had ever seen. Her skin was literally eaten through. I would load her up on ibuprophen and infants gas drops after she had gotten some popcorn and promise myself and her that she would never get any of that again. I finally put two and two together and decided that when gluten and casein went so would corn.
The more I considered it the more information seemed to fall into my lap. Every book that I picked up on Autism mentioned this diet. I walked into a group therapy session with Charlie and one of the other mothers and a therapist were discussing it! It was everywhere around me. God was saying to me “How long are you going to hold out when it is right here in front of you?” Sold. I thought about the things that they had talked about in these books and couldn’t find any reason not to try. I was not really looking forward to it but I knew it was time.
I started taking out things that contained gluten in April of 2007 and replacing them with gluten free items. Charlie was not interested in most of them. It took a lot of time (up to 10 months!) for her to try certain things. Mostly in the beginning we got by with fruit. I was lucky that fruit was something she almost always wanted. Meals were meats and vegetables with rice or potatoes or rice pasta. I also found some cookies that she would eat. Enjoy Life brand saved my life!
Those early days were so hard. I remember a time when I sat down and cried over ketchup! There were so many times that I felt like giving up. But I am glad that we didn’t. Over time I noticed more eye contact, more language, more interaction and most of all - - LESS SCREAMING!!!!!!! Hallelujah! My baby wasn’t hurting as much anymore and she was happier for it. She was able to do so many of the things that she wsan’t able to do before. We could play together, she was enjoying her time in therapy even more and over all our house was a happier place. But everyone has noticed the difference in her.
It took so much time to learn how to track down the ingredients that were affecting her. Even now, almost a year later, I am still finding things that are offending her. But every second has been worth it. I would not go back to how things were for anything in the world. I have tried may interventions for Charlie and this diet is definitely one of the top two things that have helped her.
Saturday, March 8, 2008
Welcome to my world!
"You are looking at Autism and I can't tell you if she will ever get married or go to college."
These are the words that were spoken to me 2 years ago this very day, on March 8, 2006. I was sitting in a tiny exam room with my husband and 2 year old daughter, Caroline, we call her Charlie. The Developmental Pediatrician had walked into the room not 2 minutes prior to speaking these words and had only held her hand out to shake mine in introduction. She had not even looked at my precious girl and had only made this diagnosis based on a check list that her PA had given to her.
Now let me say that I knew what was coming. Going back I have to say that there was never a time that I didn't know that this would be a part of our lives. But I will never forget the feeling of being run over by a 250 lb. linebacker. There is just no way to prepare yourself to hear these words.
I left there and cried the entire 2 hours back to our hometown. I prayed and asked God for the strength to stand under this and for the wisdom to know what to do next. But most of all I prayed that He would tell me what to say to my family. I had no idea how anyone else would respond and I felt more alone than I had ever felt in my entire life. As my sweet 2 year old giggled and played in the backseat I began to fear that this was the end of the dream that we as parents had held so sacred. That dream that we all state when we are expecting our babies and someone asks "Do you want a boy or a girl?" Everyone knows the answer to that question. "I don't care, as long as the baby is happy and healthy." That dream felt as though it had been ripped right out from under me.
And then all the sudden I felt a peace. God began to speak to me the words that sustain me even to this day. He reminded me that my child was exactly the same as she had been before we had walked into that office. She was the same child that I had carried for 9 months, nursed for too long :), and had taught almost everything that she knew. Nothing had changed other than that someone had put an official label on her symptoms. I felt God speak to my soul that this was going to be a long, hard road with many twists and turns. He told me that this was not going to be easy for me but especially not for Charlie. But He also told me to hang on because my daughter was going to have one powerful testimony. And that I was going to be a part of that.
So right then and there I gave myself a limit: two days to cry and carry on and wallow in the un-fairness of it all and then I would have to get up, put on my big girl panties so to speak and get moving. I knew that I had a job to do. Charlie needed ME and I was going to rise to that challenge with God's help alone. And that is what I did. Don't get me wrong, I have since fallen down and wallowed a bit in that pit but there is nothing like a beautiful little girl who needs you to pull you back out when you can't find the strength in yourself.
I have been thinking about doing this blog for awhile now but I couldn't help but think that it was a bit presumptuous to think that anyone would be interested in what I have to say about anything. But on this day, exactly two years form being handed what felt like the worst the world had to offer, I am here to say that LIFE GOES ON AND THERE IS HOPE! HOPE BEYOND YOUR WILDEST IMAGINATION! Did you get that? : ) God has worked so many wonders in our lives in two short years that I have to share it to keep from bursting.
This is my passion. My reason for living. To remind others that no matter what is going on in your life, no matter the garbage you feel like you are dealing with there is more there. Keep going. Keep walking when all you want to do is stop. Keep getting up in the morning when all you want to do is pull the covers over your head. I hope that this blog will help my family members near and far to keep in touch and see what wonders Charlie and her big sister Genevieve are a part of now. But I also hope to be a voice to all of those who are just starting their journey on this road. To you: the road is long but it holds more blessing than you can possibly imagine.
These are the words that were spoken to me 2 years ago this very day, on March 8, 2006. I was sitting in a tiny exam room with my husband and 2 year old daughter, Caroline, we call her Charlie. The Developmental Pediatrician had walked into the room not 2 minutes prior to speaking these words and had only held her hand out to shake mine in introduction. She had not even looked at my precious girl and had only made this diagnosis based on a check list that her PA had given to her.
Now let me say that I knew what was coming. Going back I have to say that there was never a time that I didn't know that this would be a part of our lives. But I will never forget the feeling of being run over by a 250 lb. linebacker. There is just no way to prepare yourself to hear these words.
I left there and cried the entire 2 hours back to our hometown. I prayed and asked God for the strength to stand under this and for the wisdom to know what to do next. But most of all I prayed that He would tell me what to say to my family. I had no idea how anyone else would respond and I felt more alone than I had ever felt in my entire life. As my sweet 2 year old giggled and played in the backseat I began to fear that this was the end of the dream that we as parents had held so sacred. That dream that we all state when we are expecting our babies and someone asks "Do you want a boy or a girl?" Everyone knows the answer to that question. "I don't care, as long as the baby is happy and healthy." That dream felt as though it had been ripped right out from under me.
And then all the sudden I felt a peace. God began to speak to me the words that sustain me even to this day. He reminded me that my child was exactly the same as she had been before we had walked into that office. She was the same child that I had carried for 9 months, nursed for too long :), and had taught almost everything that she knew. Nothing had changed other than that someone had put an official label on her symptoms. I felt God speak to my soul that this was going to be a long, hard road with many twists and turns. He told me that this was not going to be easy for me but especially not for Charlie. But He also told me to hang on because my daughter was going to have one powerful testimony. And that I was going to be a part of that.
So right then and there I gave myself a limit: two days to cry and carry on and wallow in the un-fairness of it all and then I would have to get up, put on my big girl panties so to speak and get moving. I knew that I had a job to do. Charlie needed ME and I was going to rise to that challenge with God's help alone. And that is what I did. Don't get me wrong, I have since fallen down and wallowed a bit in that pit but there is nothing like a beautiful little girl who needs you to pull you back out when you can't find the strength in yourself.
I have been thinking about doing this blog for awhile now but I couldn't help but think that it was a bit presumptuous to think that anyone would be interested in what I have to say about anything. But on this day, exactly two years form being handed what felt like the worst the world had to offer, I am here to say that LIFE GOES ON AND THERE IS HOPE! HOPE BEYOND YOUR WILDEST IMAGINATION! Did you get that? : ) God has worked so many wonders in our lives in two short years that I have to share it to keep from bursting.
This is my passion. My reason for living. To remind others that no matter what is going on in your life, no matter the garbage you feel like you are dealing with there is more there. Keep going. Keep walking when all you want to do is stop. Keep getting up in the morning when all you want to do is pull the covers over your head. I hope that this blog will help my family members near and far to keep in touch and see what wonders Charlie and her big sister Genevieve are a part of now. But I also hope to be a voice to all of those who are just starting their journey on this road. To you: the road is long but it holds more blessing than you can possibly imagine.
Subscribe to:
Posts (Atom)
