How I have neglected you....
It hasn't been without good reason though. I think I have outgrown this and I am a much different person than when I started this blog! Now to think of a new name and a new more appropriate purpose? I will get back to that.
We are all doing well, Kaylee is exceeding all of my wildest expectations. She is doing great in school, making friends, very happy and one of the sweetest kids you can meet. I am very proud of her and the girl she is growing into.
I have so much to say, and now the ability to say it. More to come!
Thursday, February 23, 2012
Wednesday, March 9, 2011
New Problems Traded for Old Ones
Almost everyday I ask Kaylee about her schoolday, and I usually ask about who she sat with at lunchtime. It's not just curiosity that drives me to ask, I have been waiting and asking in fear. I was expecting this day, when she would tell me she did not have someone to sit with at lunchtime.
So at bedtime we were talking and with tears in her eyes, Kaylee could barely say to me "I don't have any friends." She sat with a teacher at lunchtime.
Kaylee is still behind in her social maturity and her ability to have conversations with others. Her language skills are very basic, but she has come along way in 2 years. Just 2 years ago she began actually talking TO people and understanding what is being said to her. This summer Kaylee was able to ask questions. Even though Kaylee is doing so well now, we have traded new problems (troubles making friends and fitting in), for old ones (autistic behaviors and illness). Isn't that life? We make it over one mountain only to climb another.
It just feels so unfair, to have this little girl who has been through so much in her short life and to know the obstacles she has overcome to have to live with feeling different.
I was told by other moms who have been through this that the social skills come last in autism recovery. I just hope these skills don't come too late and Kaylee feels self-conscious by then.
But what can I control? Not much. All I could do was hug her and reassure her that she is a great little girl who can make friends.
And give her some extra fruit snacks in her lunch to share with others...
So at bedtime we were talking and with tears in her eyes, Kaylee could barely say to me "I don't have any friends." She sat with a teacher at lunchtime.
Kaylee is still behind in her social maturity and her ability to have conversations with others. Her language skills are very basic, but she has come along way in 2 years. Just 2 years ago she began actually talking TO people and understanding what is being said to her. This summer Kaylee was able to ask questions. Even though Kaylee is doing so well now, we have traded new problems (troubles making friends and fitting in), for old ones (autistic behaviors and illness). Isn't that life? We make it over one mountain only to climb another.
It just feels so unfair, to have this little girl who has been through so much in her short life and to know the obstacles she has overcome to have to live with feeling different.
I was told by other moms who have been through this that the social skills come last in autism recovery. I just hope these skills don't come too late and Kaylee feels self-conscious by then.
But what can I control? Not much. All I could do was hug her and reassure her that she is a great little girl who can make friends.
And give her some extra fruit snacks in her lunch to share with others...
Saturday, February 5, 2011
My Health - A Piece of Kaylee's Puzzle
This is out of my comfort zone for me, but if I didn’t think it was important or relevant I would not have shared my personal health problems. Maybe my sharing what I am going through will help so many moms who are doing a nearly impossible feat raising (or even recovering) their child with autism and they are under the impression that their poor state of health is due to lack of sleep and stress. But for many moms it is much more than that.
My story begins in 1998, when I was a senior in High School, I came down with a weird illness and the doctor was not sure what was wrong with me. A number of tests were done to rule out Leukemia, Mononucleosis or pneumonia. I was eventually diagnosed with Epstein Barr Viral Infection. I was told I would recover on my own with rest. My lymph nodes in my neck never went back to their normal size, and for years I would suffer recurrent strep infections and mysterious illnesses that would surface whenever I was under stress.
Shortly after Kaylee was born, I went to my doctor and told him I was so tired and achy. I felt like something was wrong with me. He decided to check my thyroid for an underactive thyroid and also rule out anemia, both tests came out within normal limits. After that nothing else was discussed and soon after I was expecting my 2nd child and then my 3rd child, and believe it or not, I actually felt better during my pregnancies. Now that it has been 3 years since I had my last child, my health has been steadily declining.
Here is my list of symptoms for some time now, with periods of remission (during pregnancies):
• Swollen, painful lymph nodes in my neck
• Constant fatigue, sometimes to the point where I feel sick
• Daily headaches
• Migraines in the middle of the night
• Food allergies
• Achy all over
• Difficulty concentrating, especially for long periods of time
• Stress intolerance
• Exercise Intolerance
• Sleep Disturbances, insomnia
• Unrefreshing sleep (waking up tired and sore)
A few months ago I went to a new doctor and I was diagnosed with Chronic Fatigue Syndrome. Right now there is nothing my doctor can (or WILL) do for my symptoms. If I am careful about what I eat (no wheat or dairy, just like Kaylee), and if I make sure I am always taking Aleve, if I get plenty of sleep and do not push myself too hard physically, I feel relatively ok. But the truth is most of the time I feel sick. There are many more “bad” days than “good”. Everyday is a battle for me, I constantly need rest and I have to be careful about the foods I eat, take Aleve and coffee certainly helps too.
But most importantly, I truly believe that my poor health is definitely a piece of Kaylee’s Autism puzzle. I believe I am sick with the same thing that is affecting Kaylee.
I will explain more about this in my posts to come. I have so much information that I have been working on for many months now and because of my health problems I have found it difficult to organize my thoughts but I will do my best. Please be patient with me as I try to explain what is going on and please ask me questions...email me…anything!
My new email address is itsnotautism@gmail.com for anyone that wants to ask me questions, etc.
Be blessed!
My story begins in 1998, when I was a senior in High School, I came down with a weird illness and the doctor was not sure what was wrong with me. A number of tests were done to rule out Leukemia, Mononucleosis or pneumonia. I was eventually diagnosed with Epstein Barr Viral Infection. I was told I would recover on my own with rest. My lymph nodes in my neck never went back to their normal size, and for years I would suffer recurrent strep infections and mysterious illnesses that would surface whenever I was under stress.
Shortly after Kaylee was born, I went to my doctor and told him I was so tired and achy. I felt like something was wrong with me. He decided to check my thyroid for an underactive thyroid and also rule out anemia, both tests came out within normal limits. After that nothing else was discussed and soon after I was expecting my 2nd child and then my 3rd child, and believe it or not, I actually felt better during my pregnancies. Now that it has been 3 years since I had my last child, my health has been steadily declining.
Here is my list of symptoms for some time now, with periods of remission (during pregnancies):
• Swollen, painful lymph nodes in my neck
• Constant fatigue, sometimes to the point where I feel sick
• Daily headaches
• Migraines in the middle of the night
• Food allergies
• Achy all over
• Difficulty concentrating, especially for long periods of time
• Stress intolerance
• Exercise Intolerance
• Sleep Disturbances, insomnia
• Unrefreshing sleep (waking up tired and sore)
A few months ago I went to a new doctor and I was diagnosed with Chronic Fatigue Syndrome. Right now there is nothing my doctor can (or WILL) do for my symptoms. If I am careful about what I eat (no wheat or dairy, just like Kaylee), and if I make sure I am always taking Aleve, if I get plenty of sleep and do not push myself too hard physically, I feel relatively ok. But the truth is most of the time I feel sick. There are many more “bad” days than “good”. Everyday is a battle for me, I constantly need rest and I have to be careful about the foods I eat, take Aleve and coffee certainly helps too.
But most importantly, I truly believe that my poor health is definitely a piece of Kaylee’s Autism puzzle. I believe I am sick with the same thing that is affecting Kaylee.
I will explain more about this in my posts to come. I have so much information that I have been working on for many months now and because of my health problems I have found it difficult to organize my thoughts but I will do my best. Please be patient with me as I try to explain what is going on and please ask me questions...email me…anything!
My new email address is itsnotautism@gmail.com for anyone that wants to ask me questions, etc.
Be blessed!
Sunday, January 9, 2011
A Storm I Will Never Forget
Last week I had a certain dream, and when I had the chance to reflect on it, I knew it was something important, that maybe God was trying to reveal something to me.
I had a dream that I was back in my old apartment, the one we had lived in before Kaylee was diagnosed with autism. I was looking outside the window and I saw black clouds boiling in the distance. A horrible storm was coming and we were in it's destructive path.
Turning to Kaylee, I told her to run and hide...hurry! But she didn't even hear me, just like the days when she was at the height of her illness. I was struck with fear to see her this way again, and I was totally helpless to stop this impending disaster about to hit the lives of my family.
Later on I reflected on this dream and when I wrote out what happened it was clear to me that this storm was Autism about to hit our lives. Although I am relieved to know that our storm has passed, I know there are other families out there in their own storms, waiting them out, seeking shelter in biomedical protocols and doctors visits and therapies that never end. They are hoping that *this* time, *this* intervention is their way out.
I haven't forgotten these families. I am praying for the way out for them too. I think the way out is almost here. All I can say is Hold on! The answer is almost here! Even if I don't know you I pray for you everyday. I am not going to stop until there is a way out for all of us. I know that God doesn't want me forget, either.
Saturday, October 30, 2010
What's Been Going On? So Much!
I know it has been a long time since I have posted on this blog, I have wanted to, I have thought about it almost everyday, but the thought of writing was totally overwhelming to me. My reason for not blogging is not that I have nothing to say, on the contrary, I have so much to say I don't know where to begin or how to organize the information!
My perfectionism doesn't help either. I should say that it has frozen my creativity solid. I also struggled with "who cares what I have to say" thoughts and also feeling like posting about my life felt kind of narcissistic in a way.
But I have decided to write again despite of all that has kept me from it, imperfect as it may be.
This may take a few blog posts to say what has been going on the last few months so bear with me, if anyone reads this thing anymore, that is. If not, that's okay too! I need to get it out.
First thing, how is Kaylee? Kaylee is doing so well, I feel embarrassed to brag about it. Kaylee no longer qualifies as a child who has autism. I am tempted to take her to a specialist to get officially un-diagnosed. Every single day I marvel at how well she is doing and the gift I have been given. All of the autistic behaviors she displayed are gone. No more toe-walking, tantrumming, nightwaking, scripting, spinning, stimming, ignoring people, and anything else that she used to do that was "autistic". No more diarrhea, no more hyperactivity, no more dark eye circles, no more stomach aches. No more looking past me when I look at her. I can't even remember everything she used to do because it has been so long since she acted like a person with autism.
However, Kaylee is still a bit immature, she acts more like a 4 year old instead of a 5 year old. She plays with her friends but doesn't communicate as well as a child her age could. She recently started asking questions and answering "why" questions after a medication change back in the summertime. Kaylee is moving right along developmentally, but since she spent a few years in her autism-fog, she is behind her peers a little bit. She is a sweet and happy child most of the time, she plays with her brother and sister, and she is in a regular kindergarten class and reads so very well. I hope to post a video on here soon!
As for Kaylee's current treatment, here is what we are doing:
My perfectionism doesn't help either. I should say that it has frozen my creativity solid. I also struggled with "who cares what I have to say" thoughts and also feeling like posting about my life felt kind of narcissistic in a way.
But I have decided to write again despite of all that has kept me from it, imperfect as it may be.
This may take a few blog posts to say what has been going on the last few months so bear with me, if anyone reads this thing anymore, that is. If not, that's okay too! I need to get it out.
First thing, how is Kaylee? Kaylee is doing so well, I feel embarrassed to brag about it. Kaylee no longer qualifies as a child who has autism. I am tempted to take her to a specialist to get officially un-diagnosed. Every single day I marvel at how well she is doing and the gift I have been given. All of the autistic behaviors she displayed are gone. No more toe-walking, tantrumming, nightwaking, scripting, spinning, stimming, ignoring people, and anything else that she used to do that was "autistic". No more diarrhea, no more hyperactivity, no more dark eye circles, no more stomach aches. No more looking past me when I look at her. I can't even remember everything she used to do because it has been so long since she acted like a person with autism.
However, Kaylee is still a bit immature, she acts more like a 4 year old instead of a 5 year old. She plays with her friends but doesn't communicate as well as a child her age could. She recently started asking questions and answering "why" questions after a medication change back in the summertime. Kaylee is moving right along developmentally, but since she spent a few years in her autism-fog, she is behind her peers a little bit. She is a sweet and happy child most of the time, she plays with her brother and sister, and she is in a regular kindergarten class and reads so very well. I hope to post a video on here soon!
As for Kaylee's current treatment, here is what we are doing:
- GF/CF Nut free diet, lower in sugar and low in fruits
- Famvir (an antiviral medication)
- P/N (low dose immunotherapy/allergy treatment)
If Kaylee does happen to eat some dairy or wheat she will become hyperactive, have tantrums, and nightwaking return within 30 minutes. However, when we first started the GF/CF diet, I didn't really notice when she had a dietary infraction because there was just too much inflammation going on. The better Kaylee gets, the more I can tell what triggers her behaviors.
I hate to sound proud about Kaylee's progress, I hate how torn I am about sharing it. I certainly don't want to brag about it, but I feel so blessed, I tell everyone about it. Our lives have changed and we are so happy about this.
I wish for everyone to have what we have. But it is not so, yet. There is a battle raging and it needs to be won. There has been some been some great discoveries made recently and I haven't been free to discuss it until recently, which I will be doing in the posts to come. It involves our entire family and most likely many families affected by autism.
Until then, be blessed, anyone who reads this!
Thursday, April 29, 2010
I'm Ba-ack!
I am still alive and I have a lot to say, many good and exciting things at the horizon! I will be posting again soon.
Until then blessings be upon you...
Until then blessings be upon you...
Monday, January 11, 2010
About Provocation/Neutralization Treatment
Here is a video that documents and shows some of the symptoms and details about Provocation/Neutralization treatment, the treatment we do for Kaylee to correct her "allergies" to chemicals, foods, molds, and other allergens. I cannot stress enough how much this has changed our lives. Kaylee is happier and feels better because of this treatment instantly .
Wednesday, December 2, 2009
Yeah...I'm Still Here!
But barely! Recently it has been sickness galore in my house! I believe we may have even been hit with the swine flu around here. Hey we survived but it was tough, the worst flu I ever had! Maybe now I can relax and not get scared about it...
Here are some Halloween pictures of the family, it was great but cold. Of course Kaylee had to be a beautiful "fairy princess", as she called her costume. I haven't shared Kaylee's peculiar preference for dresses and skirts, have I? Well this girl LOVES to look pretty. She prefers dresses and skirts everyday. She will wear pants, but begrudgingly so. I am sure she would wear makeup if I let her.
As for an update, Kaylee is doing so well. Most days we have NO tantrums whatsoever, unless she is exposed to some chemical or allergen, but the right allergen extract shot turns her right back around. I don't know what I would do without those things. Sometimes I have these far out worries that there will be some sort of nuclear holocaust and I will not be able to get Kaylee her medicine...but thats kinda overboard, right?
I want to get some before and after footage on here...but I have most of my older videos burned onto a DVD and I am not sure how to convert it to a file that I can put onto the website. Anyone know how I can do that?
Thats all for now!
Here are some Halloween pictures of the family, it was great but cold. Of course Kaylee had to be a beautiful "fairy princess", as she called her costume. I haven't shared Kaylee's peculiar preference for dresses and skirts, have I? Well this girl LOVES to look pretty. She prefers dresses and skirts everyday. She will wear pants, but begrudgingly so. I am sure she would wear makeup if I let her.
As for an update, Kaylee is doing so well. Most days we have NO tantrums whatsoever, unless she is exposed to some chemical or allergen, but the right allergen extract shot turns her right back around. I don't know what I would do without those things. Sometimes I have these far out worries that there will be some sort of nuclear holocaust and I will not be able to get Kaylee her medicine...but thats kinda overboard, right?
I want to get some before and after footage on here...but I have most of my older videos burned onto a DVD and I am not sure how to convert it to a file that I can put onto the website. Anyone know how I can do that?
Thats all for now!
Wednesday, November 18, 2009
A Great Discovery In Autism Research
This is very exciting news, and I am hoping that this news opens the doors into an awareness that there is an infectious component in the etiology of autism. A new retrovirus has been implicated as a possible factor of causation in autism and Chronic Fatigue Syndrome in adults. I have always wondered if there is some sort of HIV-like virus that was causing immune system dysfunction in our children and this could be it!
If you are interested in hearing more about this please watch these two brief videos:
Part One:
Part Two:
If you are interested in hearing more about this please watch these two brief videos:
Part One:
Part Two:
Tuesday, October 6, 2009
Who would've thought????
...that a simple pumpkin could mean so much?
But this pumpkin stands for a lot around here. It symbolizes normalcy, living life...the way other people do.
Normalcy is a little something we haven't had in this house for 3 years.
The last three years have been tumultuous, so I didn't really use my energy to decorate for holidays. I just couldn't muster up the enthusiasm. This year is going to be different. Starting now.
But this pumpkin stands for a lot around here. It symbolizes normalcy, living life...the way other people do.
Normalcy is a little something we haven't had in this house for 3 years.
The last three years have been tumultuous, so I didn't really use my energy to decorate for holidays. I just couldn't muster up the enthusiasm. This year is going to be different. Starting now.
Yeah. It's just a pumpkin carved into a jack-o-lantern. But round here, its a new beginning.
*Kaylee and Joey watch Grandpa carve a pumpkin
*Inquisitive kiddos gather round the new creation
Friday, September 18, 2009
Kaylee Prays for the NNY Autism Center
Everyday and every meal we try to instill in our children our thankfulness to God for all that He provides by saying a simple prayer thanking Him, asking for His help, and praising Him for His goodness. I keep it very simple but the most important thing is that our children are aware of His constant presence and that they understand that He is the giver of all our good things.
Kaylee has been thanking God for Mommy, Daddy, school or whatever else comes to her mind...but lately, I have been thinking how Kaylee can pray for the NNY Autism Center.
The NNY Autism Center is where we took Kaylee a year ago to see Dr. Bruce Russell, for her biomedical intervention. We flew all the way from Chicago to Buffalo, then drove another 4 hours to get to a small little town called Black River.
I was expecting some sort of big building, all industrial, modern, cold. What I found was completely different. Here in the middle of a small town, was a house made into a modest office where some very special people are helping kids recover from autism, one child at a time.
Inside of this "office" is some of the most extraordinary people I have ever met. Namely Kathy Robertson, the director and nurse practioner. Mrs. Robertson has a grown daughter who has recovered from autism. Many a times I have called her, close to tears, and she has listened and spurred me on to keep going. She helped point me in the right direction when Kaylee's allergies were out of control, helped me figure out what to do when Kaylee regressed due to Hand, Foot, and Mouth Disease.
The people at the NNY Autism Center either make a very small hourly wage or nothing at all. They work hard to earn money through a non-profit organization to help pay for kids to get the treatment they need. In a world of charletons taking advantage of desperate parents with promises of cures, these are people who truly care.
It brings tears to my eyes to think of how they have been there for me, and how they haven't given up even though their treatments aren't what is "famous" right now. I am so grateful for them.
So now every night at bedtime, Kaylee and I pray for the NNY Autism Center, Miss Kathy, Miss Sheri, and Dr. Bruce, that God would bless them mightily, provide money for them, and bless their families. For now, Kaylee doesn't really understand why we pray this way, but I know one day she will...
Kaylee has been thanking God for Mommy, Daddy, school or whatever else comes to her mind...but lately, I have been thinking how Kaylee can pray for the NNY Autism Center.
The NNY Autism Center is where we took Kaylee a year ago to see Dr. Bruce Russell, for her biomedical intervention. We flew all the way from Chicago to Buffalo, then drove another 4 hours to get to a small little town called Black River.
I was expecting some sort of big building, all industrial, modern, cold. What I found was completely different. Here in the middle of a small town, was a house made into a modest office where some very special people are helping kids recover from autism, one child at a time.
Inside of this "office" is some of the most extraordinary people I have ever met. Namely Kathy Robertson, the director and nurse practioner. Mrs. Robertson has a grown daughter who has recovered from autism. Many a times I have called her, close to tears, and she has listened and spurred me on to keep going. She helped point me in the right direction when Kaylee's allergies were out of control, helped me figure out what to do when Kaylee regressed due to Hand, Foot, and Mouth Disease.
The people at the NNY Autism Center either make a very small hourly wage or nothing at all. They work hard to earn money through a non-profit organization to help pay for kids to get the treatment they need. In a world of charletons taking advantage of desperate parents with promises of cures, these are people who truly care.
It brings tears to my eyes to think of how they have been there for me, and how they haven't given up even though their treatments aren't what is "famous" right now. I am so grateful for them.
So now every night at bedtime, Kaylee and I pray for the NNY Autism Center, Miss Kathy, Miss Sheri, and Dr. Bruce, that God would bless them mightily, provide money for them, and bless their families. For now, Kaylee doesn't really understand why we pray this way, but I know one day she will...
Wednesday, September 9, 2009
Two Anniversaries!
My one year blogging anniversary...
and Kaylee's one year anniversary since we went to New York to help heal her "autism". What a roller coaster ride it has been for us, but so well worth it.
Things are going great lately, I just started a part time job doing data entry at home so I am even more busy than I was before. I don't want this blog to be a place where I blabber on about my life, but I record some of my experiences and how I got through them to help others. But most of all, I am having trouble trying to express what I want to say on this blog, and lately I have been battling discouragement with it. I wonder if it really makes any difference if I write in it. At least now I can remember everything we have gone through in this journey, though.
Kaylee is doing so well, I took her in for speech therapy (actually its "language therapy") because she has some difficulties saying things she wants to say (her syntax is off, for example), but all in all she is much much better. The transformation in her from one year ago is almost unbelievable.
An interesting thing happened with Kaylee's speech therapy that I have mixed feelings about, Kaylee's speech therapist told me she had never seen a child with autism recover like Kaylee has. In fact, she told me she thinks autism is overdiagnosed and she doubted that Kaylee even had autism. She went as far as questioning whether a doctor had diagnosed Kaylee with autism...
Two years ago this past August a developmental pediatrician diagnosed Kaylee with autism and sent us on our way. This doctor told me there was nothing we could do about it, no "cure", and she could not even tell me how severe Kaylee's autism was, because she said it was hard to tell but she said Kaylee easily fit the diagnosis for autism. I will never forget the look in her eyes, I could tell that she knew what we were in for...I wondered how she could have a job like this; "breaking the news" to parents that will start them on a difficult journey without much help or hope along the way. Yet another child lost to this monster we call "autism".
But I digress, I was actually quite mad about what the speech therapist said. Dan and I have been through the fire these past two years after the diagnosis, dealing with tantrum-filled days, sleepless nights, and a child who was totally in her own world. We have spent thousands of dollars to get her back. We want other parents to know that AUTISM ISN'T REALLY AUTISM. These kids are sick and they need help: medical help!!!!!!
My daughter did have autism, and it's great that even an experienced professional can't recognize it anymore, but unfortunately it still supports the ignorance that exists and the belief that autism isn't treatable when in fact, it is. These kids are sick, they are unhappy, and they have incredible strength to get through the day and do the simplest things. My heart breaks for them. People need to WAKE UP before we lose more children!! And trust me, we will. Things are not getting better. Now a recent study has shown that 1% of children have autism.
So even if I feel like this blog isnt reaching a lot of people in a Jenny-McCarthy-like magnitude, at least it may help one child, one day, to get the help they need, and in that case it will be well worth the work.
and Kaylee's one year anniversary since we went to New York to help heal her "autism". What a roller coaster ride it has been for us, but so well worth it.
Things are going great lately, I just started a part time job doing data entry at home so I am even more busy than I was before. I don't want this blog to be a place where I blabber on about my life, but I record some of my experiences and how I got through them to help others. But most of all, I am having trouble trying to express what I want to say on this blog, and lately I have been battling discouragement with it. I wonder if it really makes any difference if I write in it. At least now I can remember everything we have gone through in this journey, though.
Kaylee is doing so well, I took her in for speech therapy (actually its "language therapy") because she has some difficulties saying things she wants to say (her syntax is off, for example), but all in all she is much much better. The transformation in her from one year ago is almost unbelievable.
An interesting thing happened with Kaylee's speech therapy that I have mixed feelings about, Kaylee's speech therapist told me she had never seen a child with autism recover like Kaylee has. In fact, she told me she thinks autism is overdiagnosed and she doubted that Kaylee even had autism. She went as far as questioning whether a doctor had diagnosed Kaylee with autism...
Two years ago this past August a developmental pediatrician diagnosed Kaylee with autism and sent us on our way. This doctor told me there was nothing we could do about it, no "cure", and she could not even tell me how severe Kaylee's autism was, because she said it was hard to tell but she said Kaylee easily fit the diagnosis for autism. I will never forget the look in her eyes, I could tell that she knew what we were in for...I wondered how she could have a job like this; "breaking the news" to parents that will start them on a difficult journey without much help or hope along the way. Yet another child lost to this monster we call "autism".
But I digress, I was actually quite mad about what the speech therapist said. Dan and I have been through the fire these past two years after the diagnosis, dealing with tantrum-filled days, sleepless nights, and a child who was totally in her own world. We have spent thousands of dollars to get her back. We want other parents to know that AUTISM ISN'T REALLY AUTISM. These kids are sick and they need help: medical help!!!!!!
My daughter did have autism, and it's great that even an experienced professional can't recognize it anymore, but unfortunately it still supports the ignorance that exists and the belief that autism isn't treatable when in fact, it is. These kids are sick, they are unhappy, and they have incredible strength to get through the day and do the simplest things. My heart breaks for them. People need to WAKE UP before we lose more children!! And trust me, we will. Things are not getting better. Now a recent study has shown that 1% of children have autism.
So even if I feel like this blog isnt reaching a lot of people in a Jenny-McCarthy-like magnitude, at least it may help one child, one day, to get the help they need, and in that case it will be well worth the work.
Tuesday, August 18, 2009
Some of our Special Diet Staples
Since Kaylee is on such a limited diet and has so many food intolerances, and it's so difficult to find foods that she can have without symptoms, I thought I would share some of the products we would be hard to live without, for those who would like some pointers about which foods to feed their allergic child.
Believe it or not, regular store bought tater tots and fries have soy and lots of preservatives in them. Kaylee could not tolerate them, so I was ecstatic when I found these at Whole Foods Market. The kids love spelling out words with their Alphatots! :)
I once saw a You-Tube video presentation of an autism-mom doing GF/CF cooking and she ground up these Veggie-Chips and used them as a coating for fried chicken nuggets. I have been doing this ever since and it is a delicious gluten free coating! I use a food processor and pulverize a bunch of bags every once in a while and use them in place of bread crumbs in any recipe!
This is ghee from Purity Farms as a butter substitute. Its actually butter with all of the milk proteins extracted. I assure you its totally safe and good for people who cannot tolerate soy or milk, but dont want to use margarine which is full of trans fats. I actually get mine from Wal-Mart!
I love love love this product! This is our peanut butter substitute, and it tastes really good! A great thing for a picky 4 year old eater, its for those times you just want to make a sandwich and not cook something (which I feel like I do all of the time). Kaylee loves to dip apple slices in it. I also make really yummy Sunbutter cookies (just like peanut butter cookies! and they are GF/CF!) You can find this at Walmart too!
Corn Thins are like rice cakes only much thinner, which I think makes it tastier, and Kaylee loves them as a bread substitute for her "PB" and Jelly sandwiches. I think these taste a lot less "cardboard" like than regular rice cakes.
Believe it or not, regular store bought tater tots and fries have soy and lots of preservatives in them. Kaylee could not tolerate them, so I was ecstatic when I found these at Whole Foods Market. The kids love spelling out words with their Alphatots! :)
I once saw a You-Tube video presentation of an autism-mom doing GF/CF cooking and she ground up these Veggie-Chips and used them as a coating for fried chicken nuggets. I have been doing this ever since and it is a delicious gluten free coating! I use a food processor and pulverize a bunch of bags every once in a while and use them in place of bread crumbs in any recipe!
I love to use this when frying chicken nuggets or cooking anything or in place of shortening in any recipe (such as cookies or homemade frosting). It works just as well as Crisco but its much more healthy for you because it is trans fat free.
This is ghee from Purity Farms as a butter substitute. Its actually butter with all of the milk proteins extracted. I assure you its totally safe and good for people who cannot tolerate soy or milk, but dont want to use margarine which is full of trans fats. I actually get mine from Wal-Mart!
I love love love this product! This is our peanut butter substitute, and it tastes really good! A great thing for a picky 4 year old eater, its for those times you just want to make a sandwich and not cook something (which I feel like I do all of the time). Kaylee loves to dip apple slices in it. I also make really yummy Sunbutter cookies (just like peanut butter cookies! and they are GF/CF!) You can find this at Walmart too!
Another real blessing are these allergen-free chocolate chips by Enjoy Life. They are gluten free, dairy free, and soy free. You can't find chocolate chips anywhere without those ingredients. And who doesn't like chocolate? I make Kaylee chocolate chip GF muffins and the whole family loves them! Even though they are GF!
Here's to good eatin' even if you are on a restricted allergy diet!
Thursday, August 6, 2009
Kaylee Surprised Me...
Kaylee surprised me yesterday morning when she told me, "Look Ma! I made a person!"
Ain't it cute? See the arms are coming out of the sides of the head? You can't see it but this person has some stick feet and legs, too. I couldn't believe she made it herself until I called my husband at work and asked if he did it! Sure enough Kaylee did it all by herself!
Why is this so cool? It's because it represents another developmental milestone for her. Not only does that take fine motor control, but much more maturity cognitively speaking.
A year ago, this kid was eatin' crayons and the paper labels on them.
This year, drawing pictures!!!!!!!
I just remembered that her IEP for school was to draw a face with eyes and they were going to work her through one body part at a time and here she does the whole shebang!
Ain't it cute? See the arms are coming out of the sides of the head? You can't see it but this person has some stick feet and legs, too. I couldn't believe she made it herself until I called my husband at work and asked if he did it! Sure enough Kaylee did it all by herself!
Why is this so cool? It's because it represents another developmental milestone for her. Not only does that take fine motor control, but much more maturity cognitively speaking.
A year ago, this kid was eatin' crayons and the paper labels on them.
This year, drawing pictures!!!!!!!
I just remembered that her IEP for school was to draw a face with eyes and they were going to work her through one body part at a time and here she does the whole shebang!
Tuesday, July 28, 2009
Update Time!
I better get another post in for this month! Otherwise I will have only one for July!
I should really update how things are going with Kaylee. They are great! I have been playing detective with her though. Kaylee's immune system is "exquisitively sensitive" as her nurse practitioner in NY told me last week. For instance, if Kaylee deviates from her limited diet right now with a piece of pizza or a hash brown from McDonald's (yes we had quite a time after that) she has potty problems and an impossible attitude and her stim behaviors return.
We have also figured out that some of her allergy extract shots were not helping but hurting her progress. I wasn't sure what to do and I prayed for God's wisdom and started removing ones I felt might be the culprit and I was right! Oh the Lord doth give wisdom liberally to those who ask! (James 1:5)
If Kaylee has a good day with no dietary issues and her shots are all ok, she is a dream child. Well behaved and so talkative and easy. I have wanted to shout from the rooftops about how well she is doing! If I were to take her to a doctor today I believe that she would no longer have the autism diagnosis. She does not fit the DSM IV criteria!
Our only issues now is her catching up to her peers and making sure we keep her immune system cooling down and modulated.
What a far cry from a year ago.
I tell everyone I know about what we are doing. I hope that people will listen when I tell them my child is being healed! And there are many others! Why won't people listen? I don't understand. Living with autism has been a nightmare, one of the worst things that could happen to my child. It is harder to live with it than to try and get her better. Yes this road has been hard, all of these treatments but we are on the other side now.
I try not to get discouraged. Not everyone will hear and want to do what we are doing for Kaylee, and that's okay. But really, no one has wanted to listen.
And I feel much sorrow out there for the children who have to suffer not only physically but emotionally and mentally too.
Well thats not the best writing I have ever had, but that's what's on my mind tonight. God bless you with wisdom and strength!
I should really update how things are going with Kaylee. They are great! I have been playing detective with her though. Kaylee's immune system is "exquisitively sensitive" as her nurse practitioner in NY told me last week. For instance, if Kaylee deviates from her limited diet right now with a piece of pizza or a hash brown from McDonald's (yes we had quite a time after that) she has potty problems and an impossible attitude and her stim behaviors return.
We have also figured out that some of her allergy extract shots were not helping but hurting her progress. I wasn't sure what to do and I prayed for God's wisdom and started removing ones I felt might be the culprit and I was right! Oh the Lord doth give wisdom liberally to those who ask! (James 1:5)
If Kaylee has a good day with no dietary issues and her shots are all ok, she is a dream child. Well behaved and so talkative and easy. I have wanted to shout from the rooftops about how well she is doing! If I were to take her to a doctor today I believe that she would no longer have the autism diagnosis. She does not fit the DSM IV criteria!
Our only issues now is her catching up to her peers and making sure we keep her immune system cooling down and modulated.
What a far cry from a year ago.
I tell everyone I know about what we are doing. I hope that people will listen when I tell them my child is being healed! And there are many others! Why won't people listen? I don't understand. Living with autism has been a nightmare, one of the worst things that could happen to my child. It is harder to live with it than to try and get her better. Yes this road has been hard, all of these treatments but we are on the other side now.
I try not to get discouraged. Not everyone will hear and want to do what we are doing for Kaylee, and that's okay. But really, no one has wanted to listen.
And I feel much sorrow out there for the children who have to suffer not only physically but emotionally and mentally too.
Well thats not the best writing I have ever had, but that's what's on my mind tonight. God bless you with wisdom and strength!
Sunday, July 5, 2009
"Soul Work" Article
Did you ever feel mad at God? Did you ever question Him, feel like He was cruel to you because of your circumstances? Because of the unfairness of your child's disability? Did you ever feel like God's expectations of you were too much? Did you ever feel like God's grace wasn't enough for you to get through?
I am ashamed to say I ask those questions. Just when I think I get out of my rut, something else happens and I am asking God "why?" all over again.
In fact, today I am laying on my couch while everyone else is at church because I am in pain yet again. It comes and goes and all I can do is rest and not move for awhile until it dies down. I have been dealing with this for almost 3 months now.
This morning, I came across this article, it's by Chuck Swindoll's daughter, Colleen. She has a son who has autism, too. I really appreciate how real she is about her struggles and the way she deals with the overwhelming difficulties she has faced in raising a child with severe autism and a number of other diagnoses. I hope you will take the time to read it because it will bless you, even if you don't have a child with special needs.
I am ashamed to say I ask those questions. Just when I think I get out of my rut, something else happens and I am asking God "why?" all over again.
In fact, today I am laying on my couch while everyone else is at church because I am in pain yet again. It comes and goes and all I can do is rest and not move for awhile until it dies down. I have been dealing with this for almost 3 months now.
This morning, I came across this article, it's by Chuck Swindoll's daughter, Colleen. She has a son who has autism, too. I really appreciate how real she is about her struggles and the way she deals with the overwhelming difficulties she has faced in raising a child with severe autism and a number of other diagnoses. I hope you will take the time to read it because it will bless you, even if you don't have a child with special needs.
Friday, July 3, 2009
Keepin' My Eyes on Him
I could have saved myself a lot of trouble. I could have trusted Him in the first place.
Instead, two years ago, I spent countless hours hunting for a cure for autism in front of this illuminated computer screen. I had amassed hours and hours of lost sleep searching and searching for an answer. THE answer. All of my investigating did not avail me an answer I believed was true.
One night, I awoke at 3AM to another night of Kaylee singing to herself, laughing hysterically at who knows what. Something is wrong! This is NOT how its supposed to be... I thought to myself as I gingerly left my bed trying not to wake up my husband with my weeping.
Her laughter felt so cruel to me, so paradoxical to how I was feeling inside. So disconnected from the rest of the sleeping world around her.
So I wrote my prayer to God, I sobbed until I felt weak. I knew there was an answer. Or maybe I couldn't believe there wasn't one?
Then, there was silence. My mind was quiet.
In that silence I heard something from inside. I heard "Keep your eyes on Me."
But I knew if there was such a solution to the dilemma that God would have the answer for it and He could bring it to me if He wanted to. I didn't have to look. I had to let go and let Him bring me the answer.
In that moment, I knew He could, and He would.
The truth was, He already had. I wasn't ready for it yet! I had my own preconceptions about what was wrong with Kaylee, I wouldn't listen when a friend told me about NeuroImmune Dysfunction Syndrome. I had never come across it before and it wasn't "DAN" (Defeat Autism Now - the most well-known biomedical autism school of thought today) and they used medications, which I was uncomfortable with.
It took a few months but I had run out of treatment options and I decided to give NIDS another look. Now, in my desperation, the NIDS theory seemed to make sense to me.
Everything "worked out" and we took Kaylee to the NNY Autism Clinic 3 weeks later.
Since then I have watched my daughter come out of her world and into mine and I have thought to myself with a chuckle "You found me, Lord. You brought the answer to me." All of my fretful research-hours were wasted ones. I should have just kept my eyes on Him!
Instead, two years ago, I spent countless hours hunting for a cure for autism in front of this illuminated computer screen. I had amassed hours and hours of lost sleep searching and searching for an answer. THE answer. All of my investigating did not avail me an answer I believed was true.
One night, I awoke at 3AM to another night of Kaylee singing to herself, laughing hysterically at who knows what. Something is wrong! This is NOT how its supposed to be... I thought to myself as I gingerly left my bed trying not to wake up my husband with my weeping.
Her laughter felt so cruel to me, so paradoxical to how I was feeling inside. So disconnected from the rest of the sleeping world around her.
So I wrote my prayer to God, I sobbed until I felt weak. I knew there was an answer. Or maybe I couldn't believe there wasn't one?
Then, there was silence. My mind was quiet.
In that silence I heard something from inside. I heard "Keep your eyes on Me."
But I knew if there was such a solution to the dilemma that God would have the answer for it and He could bring it to me if He wanted to. I didn't have to look. I had to let go and let Him bring me the answer.
In that moment, I knew He could, and He would.
The truth was, He already had. I wasn't ready for it yet! I had my own preconceptions about what was wrong with Kaylee, I wouldn't listen when a friend told me about NeuroImmune Dysfunction Syndrome. I had never come across it before and it wasn't "DAN" (Defeat Autism Now - the most well-known biomedical autism school of thought today) and they used medications, which I was uncomfortable with.
It took a few months but I had run out of treatment options and I decided to give NIDS another look. Now, in my desperation, the NIDS theory seemed to make sense to me.
Everything "worked out" and we took Kaylee to the NNY Autism Clinic 3 weeks later.
Since then I have watched my daughter come out of her world and into mine and I have thought to myself with a chuckle "You found me, Lord. You brought the answer to me." All of my fretful research-hours were wasted ones. I should have just kept my eyes on Him!
Tuesday, June 30, 2009
The ATEC
Months ago I found out about a free online exam, the ATEC (Autism Treatment Evaluation Checklist) made by the Autism Research Institute (it is statistically reliable) that evaluates the efficacy of any treatment you are using on your child based on your report of their "autistic symptoms". The lower the score, the better. This checklist evaluates areas such as speech/communication, sociability, sensory/cognitive awareness, and health/physical/behavior.
On January 12, 2009, Kaylee scored a 50 on the ATEC.
On June 11, 2009, Kaylee scored a 12!!!!
If you are interested in scoring your own child with the ATEC you can find this here.
On January 12, 2009, Kaylee scored a 50 on the ATEC.
On June 11, 2009, Kaylee scored a 12!!!!
If you are interested in scoring your own child with the ATEC you can find this here.
Wednesday, June 17, 2009
Kaylee and Mommy Update (A long-winded post)
When I have been thinking about what to post on my blog lately, I feel like I am a dry well. Not because things aren't happening, but because I am totally and utterly spent. For weeks I have been in survival mode. My creative juices were drying up and I felt like I couldn't write a good post. Exhaustion and a perfectionism like that make for a no-posting kind of blog.
I have been determined not to make this a place where I vent and complain about my circumstances, my purpose for this blog is to honestly document my journey in living with and attempting to heal my daughter's autism.
So here is an update of whats going on: Kaylee is doing great! I can't say it enough. She is so easy to get along with, tantrums are nonexistant, she is effortlessly potty-trained, she's happy, interacting, playing, in the "that's mine!" stage.
As for me, I am struggling. This story started over two months ago, Kaylee's behavior was impossible and I was frazzled. Every free moment I was either taking Kaylee to stressful allergy testing appointments, attempting to cook new foods for her (and failing) and there were many other commitments I was trying to keep, besides caring for 3 very young children.
I was so stressed out I felt like I couldn't rest. Even if I was sitting still, I felt worried and wound up. I felt like I was always on the edge.
I felt so alone, I had no peace. When I read the bible it felt like hollow words to me. The words of my prayers seemed to drop like cement the minute they left my lips. I felt weary and burdened.
I remember telling Dan, my husband, I had this vague sense that something was really wrong with me, but I couldn't figure out what exactly it was. A few days later a peculiar rash appeared on my legs, and my feet swelled up. I was concerned but when I woke up the next day the rash had gotten worse and spread.
I went to the doctor and finally after many tests they figured out that I had vasculitis. That means my immune system was attacking my own blood vessels. The doctors had to check me for some serious diseases, like lupus and cancer, which came out negative. It was quite a scare for me.
But even today, 6 weeks later I am left with the aftermath of this illness. I have very painful sores on my legs and feet and its very difficult for me to get through each day. I have to go to wound care specialists a few times a week, because my skin isn't healing very well.
I am not sharing this to get pity, I am just trying to be real about what my life has been like. Times have been hard lately. The most difficult part was when I felt like God was so far away. The truth is, it was me who was far away.
It occured to me though, that everyone goes through hard times. As far as I know, the death rate is 100%. Everyone's health fails at some point in their life. Being a christian does not save me from trials and troubles. That is a far cry from what some of the pastors are preaching today. How disappointed are so many people when God doesn't give them what they want or when He doesn't save them from their circumstances? How many will have a love that waxes cold because they only know the gifts and not the Great Giver?
I think these circumstances brought me to a new level of fellowship with God. I feel pleasantly broken. Yes, that's the best way I could put it. I was very humbled by my circumstances and I reached out to God and accepted with joy, His will for me at this time. After that I felt so free!
The Good Lord is forcing me to rest (I have to have my feet up as much as possible). He is forcing me to trust Him. He is forcing me to ask Him for strength to get through each day (sometimes its each hour). He is forcing me to reassess my priorities. Yes I may have sticky floors and two bathroom sinks that need cleaning. I am learning to be okay with that.
Gee I think I have been all over the place on this post. I apologize. It's the best I could do right now.
I have been determined not to make this a place where I vent and complain about my circumstances, my purpose for this blog is to honestly document my journey in living with and attempting to heal my daughter's autism.
So here is an update of whats going on: Kaylee is doing great! I can't say it enough. She is so easy to get along with, tantrums are nonexistant, she is effortlessly potty-trained, she's happy, interacting, playing, in the "that's mine!" stage.
As for me, I am struggling. This story started over two months ago, Kaylee's behavior was impossible and I was frazzled. Every free moment I was either taking Kaylee to stressful allergy testing appointments, attempting to cook new foods for her (and failing) and there were many other commitments I was trying to keep, besides caring for 3 very young children.
I was so stressed out I felt like I couldn't rest. Even if I was sitting still, I felt worried and wound up. I felt like I was always on the edge.
I felt so alone, I had no peace. When I read the bible it felt like hollow words to me. The words of my prayers seemed to drop like cement the minute they left my lips. I felt weary and burdened.
I remember telling Dan, my husband, I had this vague sense that something was really wrong with me, but I couldn't figure out what exactly it was. A few days later a peculiar rash appeared on my legs, and my feet swelled up. I was concerned but when I woke up the next day the rash had gotten worse and spread.
I went to the doctor and finally after many tests they figured out that I had vasculitis. That means my immune system was attacking my own blood vessels. The doctors had to check me for some serious diseases, like lupus and cancer, which came out negative. It was quite a scare for me.
But even today, 6 weeks later I am left with the aftermath of this illness. I have very painful sores on my legs and feet and its very difficult for me to get through each day. I have to go to wound care specialists a few times a week, because my skin isn't healing very well.
I am not sharing this to get pity, I am just trying to be real about what my life has been like. Times have been hard lately. The most difficult part was when I felt like God was so far away. The truth is, it was me who was far away.
It occured to me though, that everyone goes through hard times. As far as I know, the death rate is 100%. Everyone's health fails at some point in their life. Being a christian does not save me from trials and troubles. That is a far cry from what some of the pastors are preaching today. How disappointed are so many people when God doesn't give them what they want or when He doesn't save them from their circumstances? How many will have a love that waxes cold because they only know the gifts and not the Great Giver?
I think these circumstances brought me to a new level of fellowship with God. I feel pleasantly broken. Yes, that's the best way I could put it. I was very humbled by my circumstances and I reached out to God and accepted with joy, His will for me at this time. After that I felt so free!
The Good Lord is forcing me to rest (I have to have my feet up as much as possible). He is forcing me to trust Him. He is forcing me to ask Him for strength to get through each day (sometimes its each hour). He is forcing me to reassess my priorities. Yes I may have sticky floors and two bathroom sinks that need cleaning. I am learning to be okay with that.
Gee I think I have been all over the place on this post. I apologize. It's the best I could do right now.
Monday, June 8, 2009
Kaylee is 4 now! And a whole lot different...
This week, Kaylee turned 4.To many other parents, birthdays are nice and a joyful time...
but this birthday, to this parent, this year, was so special.
This year, Kaylee was here. She was with us in a way I wondered if she ever could be.
Today, I am thinking about Kaylee's birthday last year. She was sad. She was unhappy. She didn't understand what was going on. She ignored everyone who came to see her. She just didn't get it.
This year she asked me all day when we were going to have her birthday party. She excitedly hugged everyone as they came in, running out side to greet them. She drank in, with joy, as everyone sang Happy Birthday. She knew she was the special girl of the day. She was so happy.
This year we asked her what she wanted for her birthday. She replied, "ummmm...a birthday cake...and sprinkles...and candles....and Auntie Cher and Grandpa to come over!" I got right to it and made her special cupcakes that she could tolerate, and thankfully, she loved them, and her Auntie and Grandpa are so tickled to finally get some much anticipated attention from her!
The changes in Kaylee are unbelievable, when I think about where she was a year ago, we are so blessed to have come this far.
Now, the new problem is...this girl asks me if we are going to have a party everyday!
Subscribe to:
Posts (Atom)