Blooming Where He Plants Me

New Problems Traded for Old Ones

2011-03-09T08:54:00.004-06:00

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...

New Blog

2011-03-07T12:05:00.003-06:00

I have started another blog, I may continue to write on this one, but I do feel as if I am on a new journey now. Here at my Blooming blog I will continue to write about my faith journey even as my goals have changed, but my other blog will center around medical and political issues. It is called "Infectious Autism" because I believe Autism is due to an infectious disease. The new address for my blog is:

www.itsnotautism.blogspot.com

I hope you will join me there also! Thank you for joining me in my journey thus far!

My Health - A Piece of Kaylee's Puzzle

2011-02-05T14:53:00.002-06:00

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!

A Storm I Will Never Forget

2011-01-09T22:41:00.003-06:00

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.

What's Been Going On? So Much!

2010-10-30T17:54:00.005-05:00

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:

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!

I'm Ba-ack!

2010-04-29T23:36:00.000-05:00

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...

About Provocation/Neutralization Treatment

2010-01-11T10:03:00.000-06:00

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 .

Yeah...I'm Still Here!

2009-12-02T23:03:00.000-06:00

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!

A Great Discovery In Autism Research

2009-11-18T16:35:00.000-06:00

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:

Who would've thought????

2009-10-06T11:16:00.000-05:00

...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.

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

Kaylee Prays for the NNY Autism Center

2009-09-18T17:58:00.000-05:00

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...

Two Anniversaries!

2009-09-09T12:18:00.001-05:00

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.

Some of our Special Diet Staples

2009-08-18T08:07:00.000-05:00

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.

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!

Kaylee Surprised Me...

2009-08-06T14:09:00.000-05:00

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!

Update Time!

2009-07-28T20:43:00.000-05:00

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!

"Soul Work" Article

2009-07-05T12:09:00.000-05:00

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.

Soul Work by Colleen Swindoll

Keepin' My Eyes on Him

2009-07-03T14:46:00.000-05:00

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!

The ATEC

2009-06-30T21:04:00.000-05:00

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.

Kaylee and Mommy Update (A long-winded post)

2009-06-17T21:33:00.000-05:00

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.

Kaylee is 4 now! And a whole lot different...

2009-06-08T13:30:00.000-05:00

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!

What if it's not Autism Presentation

2009-05-29T09:29:00.001-05:00

If you are curious and not much of a reader, I recommend watching this presentation by Dr. Michael Goldberg who discusses why the NIDS doctors treat autism like a disease. Very understandable yet very scientific!

What if it's not Autism?

Why we think this allergy treatment will help Kaylee

2009-05-20T22:30:00.000-05:00

The immune system is an extremely underappreciated entity. We take this very complex system for granted everyday, until it fails us and doesn't perform the way we expect it to. Our immune systems are so powerful it can kill through a hyperresponse (anaphylaxis) or a hyporesponse (e.g. AIDS). There is a spectrum of reactions ranging in between these responses. Kaylee suffers from (and so do most, if not all ASD kids) both sides of reactions. She is hyporesponsive to viruses, bacteria, and yeasts and hyperresponsive to everything else. This is the earmark of immune system dysfunction.

When Kaylee was tested for what she would react to, we were surprised that she reacted to almost everything, some things more than others. This is significant because it gives us a clue into how her immune system is functioning (or better said dysfunctioning) at this time. Her mild reactions to everything shows us that her immune system is in overdrive. So when I say "allergies" for Kaylee's reaction, it's because I don't have a better term. Kaylee is reacting to everything but it isn't always an allergenic response: it's an inflammatory one.

These allergies aren't just a nuisance for Kaylee, they are causing her body to be in a chronic inflammatory state (and by the way...yeast loves inflammation). Now her immune system doesn't know what it's doing anymore, its just firing off everywhere at everything. This makes for a not-so-happy-Kaylee. I am guessing she's not feeling so well. She's extra sleepy, crabby, defiant, and more when like most kids are when they don't feel their best.

So why didn't I just use antihistamines for her allergies? I tried and they didn't work. The antihistamine drugs only took the edge off because they only eliminate one chemical pathway in this inflammatory process. In an immune system reaction there are so many pathways that are triggered by chemical messengers, such as histamines, prostaglandins, cytokines (there are lots and lots of these!), and many others. In other words, the reaction is still occuring, and the immune system is still "cued up". Neutralization treatment is the best one because it stops the whole reaction in it's tracks, therefore completely halting the inflammatory cycle.

What I love about this allergy testing is that there is no disputing that your child reacts to something; this cannot be said about blood tests. Sometimes our kids' bloodwork will not show any antibodies to an antigen, but they will still be reactive to it. P/N treatment not only accurately identifies a person's triggers, but it also gives you a way to reverse them immediately, without drugs. I think that is the best outcome I can imagine.

With all of this said, we are hoping to press the "reset button" on Kaylee's immune system by cooling it down to where it doesn't react to everything. Eventually, we hope that Kaylee will soon stop reacting on her own, without her bi-weekly injections.

*These are the treatment vials with the antigens we inject Kaylee with every four days*

What is this new allergy treatment? Part 1

2009-05-10T22:33:00.000-05:00

I have been researching for many weeks now, trying to understand the ins and outs of this treatment Kaylee is receiving so that I can share with others what is really happening maybe a little bit about how it is working.

First, let me say what this is not: this is not what a typical allergist does. They will laugh you out of their office if you ask them about Provocation/Neutralization technique. In fact I called allergists in my HMO network and I was laughed at by one receptionist, but most didn't know what I was talking about. Only doctors from the American Academy of Environmental Medicine actually perform this testing. A most famous doctor that did this is Dr. Doris Rapp.

I wouldn't have imagined I would ever try this because it seemed too good to be true. But the director at the NNY clinic recommended it to me because she has done this with her daughter, and other ASD kids at their clinic who present with the more complicated allergy issues ( Kaylee falls into that most difficult to treat subset of children!)

This is what the testing is like:

First, the nurse injects a diluted substance of whatever antigen we are testing just under the skin (intradermally). This forms a flattened bump that is measured immediately.

In a non-reactive person, the bump either stays the same size or shrinks.
In a reactive person, like Kaylee, the bump swells within 10 minutes and becomes itchy and red. This means the immune system was triggered by the antigen that was injected. This makes the testing objective, because we can't rely on Kaylee being able to tell us how she feels. This is the Provocation stage.

Then, an even more diluted solution of the antigen is injected again intradermally, measured again. If this reacts, it is not the Neutralizing dose. If it doesn't react after 10 minutes, this is deemed the Neutralizing dose. It means that the body does not react to this concentraion of this substance/allergen. However, this won't neutralize the reaction yet because it has to be injected subcutaneously. Sounds like magic, doesn't it? I thought so too until I saw Kaylee get better with my own two eyes.

How exactly is this working? The lower dilution of the antigen activates T-Suppressor Cells in the immune system that, in essence, tell the rest of the immune system "It's alright, guys...this invader isn't worth going after." (a huge oversimplification.) Eventually, the immune system becomes desensitized and that specific antigen will no longer provoke a response. That is because T-Suppressor Cells tell the B-Cells in the immune system to stop making antibodies (which are the body's "invader recognition system")

Yes, this testing is time-consuming, tedious, and difficult to inject a 3 year old girl over and over and over again. She has been a real trooper, though. The doctor is over 70 miles away so we have had to make a few trips up there and break up our testing sessions. You can imagine the whole way up there Kaylee is in the backseat murmuring "No ouchie on my arm! No going to the doctor!"

We still aren't totally finished with all of her testing. So far we have tested a number of things like tree pollens, dust, dust mites, cockroach feces (it's in everything we eat apparently?), 18 different molds, glycerin, many foods, histamine, serotonin and next we will test more foods and grass pollens since those are starting to emerge now. In autumn we will address weeds when they come out.

Wow! Sorry if this is too long of a post. I feel like I have so much to say about this, I hope it is not confusing. I want to cover more about this in my upcoming posts. More to come!

Kaylee's Allergy Treatment Update

2009-05-05T08:55:00.000-05:00

It's been over 2 weeks since Kaylee's first visit with another doctor, Dr. Oberg, and I wanted to wait to post about her progress since I wanted to be sure before I said this...

THIS TREATMENT IS WONDERFUL!!!

For the past few months Kaylee has been on a strict Elimination Diet (no wheat, no milk, no soy, no nuts, no eggs, no yeast, no chocolate, low sugar, only 3 fruits, no tomato, no dyes, no preservatives) and Benadryl everyday. She has had an air purifier in her room, carpet removed, and everything else a mom could do, and yet her allergy symptoms were not abating. Kaylee still had major meltdowns (Sometimes up to 20 a day. All I had to do was ask her a question) and these really dark "allergic shiners". Not any "typical" allergy symptoms like a runny nose or sneezing, though and that's what used to throw me off.

Nothing has worked for Kaylee until now. Her dark under eye circles are fading, and her meltdowns are almost non-existent, she pays attention much better, her stimming is decreasing again. I find myself constantly bracing myself for her outbursts and I am pleased to find they don't happen! She is about 50-75% better already, and the people in the office tell me she will be at least 90% better in the coming weeks as her immune system cools down. The transformation thus far is such a blessing.

There is so much I want to cover about this treatment, I don't know where to start so I am going to cover it in a number of posts about what this treatment is, why and how it works, and Kaylee's before and after.

More to come!

Why My Child? Part II

2009-04-29T01:23:00.000-05:00

After all of this time of thinking upon this question, I still don't have an answer that I feel most people desire when they find out their child has a disability. But I prayed and I asked God this very question and after sometime I see that my answer is...

There is no answer! At least not one that we may know this side of heaven...

I don't find peace in believing that God "planned" this for my child. As followers of Jesus Christ, we are not spared the trials that life brings to everyone.

Does that mean that God isn't in control? No, I don't think so.

Recently I read the book of Job and if you don't know much about this man, his story is in the Old Testament. To make a long story short, God allowed many bad things to happen to Job. He lost all of his children and all of his possessions in one day, and soon thereafter he lost his health.

The rest of the book is Job questioning God, knowing he was a righteous man. He didn't understand why God would allow so many bad things to happen to him. At one point in the book, Job's wife told him to "curse God and die." Job replied, "shall we only accept good from the hand of God, and not evil also?"

After all of the questions and suggestions Job received, God finally answered Job. But he didn't really answer. He put Job in his place. "Where were you when I made the earth? The heavens...etc."

Maybe God wants us to stop asking this question.. Maybe He wants us to give up the need to understand (and would the answer be good enough anyway? Would we even have the capacity or the selflessness to understand and accept the reason?) Like a child, we need to implicitly stop questioning our Father and trust that He knows something we don't...

For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts higher than your thoughts. Isaiah 55:9

It all boils down to trusting God. That even when bad things happen and when He doesn't make sense...someone who knows God and knows His character also knows He is good. Even when bad things happen to us.

If there is one thing I want people to learn from my blog, it is this:

There are no guarantees that our situation or circumstance will get better, but God promises that He will be there.

Are not two sparrows sold for a farthing? and one of them shall not fall on the ground without your Father. Matthew 10:29

Hopefully, we can all follow Job's faithful answer and reply to our Father:

"Though He slay me, yet will I trust in Him." Job 13:15

Why my Child?

2009-04-19T22:40:00.000-05:00

This is the first subject we are "tackling" in our Wonderfully Made Moms group.

Oh does this open up a door that I have realized I never really closed.

I have asked God this question over and over. When I see other children play. Or when I see a little girl that is Kaylee's age smiling at her mom, talking with her. Or when I see other families who don't know how good they have it when their child doesn't have a tantrum when asked to do a simple thing like "get your shoes".

So why my child? Is there satisfactory answer for that? I am still thinking on this answer and I will share it in my next post.

So how about you? How did you deal with this question? I would love to hear...

An encouraging website

2009-04-09T21:17:00.000-05:00

Please checkout this website if you have some time on your hands...it includes short, homemade video clips by people whose lives have been touched by autism. I like this website because it focuses on encouragement and hope in living with autism. And if you are so inspired, these folks encourage you to make your own and add it to the site!

Enjoy!

Autism 151

Update

2009-04-02T15:43:00.000-05:00

Things have been like a roller coaster around here. Kaylee's behavior is up and down. We will have lots of bad days and a few good ones peppered in here and there, and I am pretty sure its due to her allergy/intolerance issues.

Recently, Kaylee had her Diflucan removed and she got better for a few days and then things got bad again. Then we remove something else and so it goes, its a cycle and just when I think it ends, something else comes up and her behavior gets bad again. Right now I have removed chicken from her diet and its working! But I am not holding my breath because another problem will probably arise. And so it goes with allergies...

Oh April 23 can't come fast enough! I shouldn't be placing all of my hope on one doctor (Dr. Oberg, who is a specialist in allergies and immunology), but the nurse at the NY clinic seems to know this is the key for Kaylee. However, I still place my trust in God, who is the God of knowledge. I know He knows exactly what Kaylee needs.

Right now Kaylee is still on Valtrex and Benadryl daily. She still has dark circles under her poor little eyes. She still has a very limited diet. She still breaks out into hives from certain foods. Here behavior is so difficult to deal with when we have a "bad day". She acts like a kid who is sick, over-emotional, angry, and tired all rolled up into one. Most of our days are "bad days". I would say we have a good day every ten days. This is very hard on me and the kids, too. I pray this ends soon!

On the bright side, Kaylee is really progressing cognitively and socially. She answers questions very well, can follow directions, and initiates play with other children. She especially likes older boys which I need to watch out for...

Wonderfully Made Moms

2009-03-24T23:32:00.000-05:00

This is the name of a new small bible study group that we are starting come April for mothers of children with special needs. Mrs. Cindy Evans, a godly, kind woman from my church is the one who spearheaded this new much-needed group for the moms who can get stressed while caring for a special needs child (let's be honest...any other children, too!). Mrs. Evans and her husband have also had a successful ministry called Wonderfully Made that reaches out to and ministers specifically to special needs adults in our area through fellowship and biblical teaching.

Mrs. Evans is a mother of a Trent, her grown son with Down Syndrome. He is a kind, intelligent, hardworking young man who helps out in our church by taking care of the sound ministry and taking offerings. He also greets everyone with a smile! Mrs. Evans has her own blog if you would like to visit it sometime!

A few months ago Mrs. Evans approached me about helping her out with this, and I was so elated! This kind of ministry has been something I have wanted to do for some time now, but I wasn't really sure how to go about it. No doubt it is the Lord providentially bringing us together to work together in this ministry.

Recently I have been writing questions that I have been asking God through my journey of raising a child diagnosed with autism. I remember when Kaylee was first diagnosed I was looking everywhere for a book that would help me along this road...but every book I found (yes even Christian ones!) were only about "curing" my child and not how I was to live in it! I had so many questions and I felt so alone. I wished I had an experienced friend to help encourage me along.

That is what I hope this group will bring to other mothers in a similar situation. My prayer is that we can help each other along and bring hope to others. To be a friend and lift one another up in Jesus Christ.

Here are some of the questions we hope to answer and address:

Supermom or not???

How should I discipline my special needs child?

What does God expect of me?

How do I cope with my fears and worries associated with raising a special child?

Should I homeschool my child? How do I go about doing this?

and more...

Are you a mom struggling in raising your special needs child? Are you someone who has some suggestions for what we can discuss or how we can help others?

I would love to hear from you! Please email me at jlhank80@yahoo.com or leave me a comment. And if you know a mom in the Chicago area who is interested in this small group, please send them my way!

Happy Birthday to Joey!

2009-03-23T21:44:00.000-05:00

Mr. Joey is 2 years old today!

For his birthday, he wanted his daddy to lay in his teeny tiny bed with him...

Happy Birthday, Joey...March 23, 2007 was one of the best days of my life!

What I have learned about IEP's

2009-03-20T10:35:00.001-05:00

For any of the other mom's out there who might benefit from this information about IEP meetings:

1. No matter what you say or request, the "professionals" have made their decision about what your child needs and they will not change it until they deem so...

2. If you have an extra request that costs them extra $$ you better have another "professional" opinion to back you up (such as a doctor, therapist) and even then you should still have a lawyer.

With all of that being said, I am still very thankful that Kaylee has a chance to be with teachers who care about her and understand her disability. I am grateful for a school system that even cares at all about my child with special needs and continues to accomodate her...

I have an aunt who is mentally disabled and years ago they just stopped her schooling because they deemed her incompetent. She didn't even get past eighth grade.

In another country my child would be forgotten and I am grateful for the resources God has provided for her, even if I feel they are not enough.

Dan and I decided that we are not going to "fight the system", but work as hard as we can with her at home and we hope that her getting better physically will be the biggest most worthwhile action we take on Kaylee's road to recovery.

Kaylee's teachers told Dan and I at the meeting that they were impressed with how well Kaylee is improving, and so quickly. As I mentioned before, once we started the NIDS Protocol, Kaylee flew through her IEP goals and objectives in just over 2 months. That was after having them for 6 months prior. Things seem to be clicking for her now.

So for now, I am thankful and not at all angry about not getting what I wanted for her. I believe that God knows exactly what Kaylee needs.

IEP Day

2009-03-19T09:39:00.000-05:00

Today, in about an hour, is Kaylee's IEP(Individualized Education Plan). I am hoping and praying that I have wisdom and kindness while working with Kaylee's IEP team. I have been upset lately after doing some of my own research of the FAPE (Free Appropriate Public Education) Act. Kaylee is not getting an appropriate education by any means. Her school's main objective (as evidenced by her last IEP) is to simply "mainstream" her so she fits in. She gets the bare minimum in services.

Well, again, I trust that my Father will give me wisdom and words so we can help Kaylee be an independent, useful lady who participates and contributes to society.

I will update soon!

The GF/CF Diet...How and why we got started

2009-03-16T00:32:00.000-05:00

After Kaylee was diagnosed with autism I got to researching. I read lots and lots of books and found a lot of information on the Internet (much of it conflicting...none scientifically proven, but that's a whole other post) and I don't remember where I heard of it, but I read one of the must reads for autism moms: Unraveling the Mystery of Autism by Karyn Seroussi. Before I read this book I never knew that autism was something kids could recover from. I thought kids were born autistic!

In this book, Karyn Seroussi talks about one of the first interventions she implemented for her son was the Gluten Free/Casein Free diet. This diet is one that excludes all wheat and dairy.

The standing theory is: when our children with autism eat these foods they can become chemicals like drugs that can fog up our children's minds and/or trigger their immune systems. This could be due to the 'leaky gut" syndrome, but nothing has really been proven as far as I know. But one thing is for sure, it has helped many children with autism either recover or at least improve their condition.

Now I was glad that there may be hope for my little girl when I read that, but I wept with an overwhelming fear and trepidation, "how am I going to do something like that????" I was expecting my third child at the time and I had a 2 year old and a 4 month old. Where would I find the time to cook all of this stuff? And what if she didn't eat it?

I believed that Kaylee was a definite candidate for this diet, pending her constant diarrhea, pale sickly look, and her underweight body seemed to be reason enough for me to take this step, scary as it was for me.

First, I took out the milk and replaced it with soy milk. She seemed OK with that.

The wheat? That was the hard part. If you want to go gluten free and you don't have much money (like us), you have to cook from scratch. That's what I did! I found some recipes online to replace what Kaylee's "usuals" were and I haunted the health food stores.

At first, Kaylee didn't like her new diet. I remember when I put the first GF/CF chicken nuggets in front of her. She wanted her Tyson chicken nuggets. She gave me a puzzled look at first and then proceeded to ignore them. I didn't fight her about it, I just let her from out of her chair and eventually she became hungry enough to eat them (this was at dinnertime) and she still eats them today.

After a little time on the GF/CF diet, I noticed that Kaylee's speech increased, and her poops were better, but still not normal. I was disappointed with her lack of growth. I heard of stories about people's kids speaking sentences after their child's gluten-and-milk-induced fog lifted, but such was not our case.

However, that is where I could lead into the next thing: the diet wasn't the whole problem for Kaylee. Later, after starting Kaylee on the NIDS Protocol for awhile I started to see that we were removing her triggers one by one: viruses, yeast, allergies. We are still working on the allergies now. It is important to know that even if your child doesn't totally show an improvement on GF/CF, you may be missing a part of the picture, but still on the right path! I believe that most if not all of our kids with autism have an issue with these foods until they become healthier.

I have been cooking GF/CF for Kaylee for over a year and a half now, and now I have a system that works for us. I will be sharing some of my tips in my next post.

Wow! Lots of blessings!

2009-03-12T20:10:00.000-05:00

Today, I received a phone call and it was the allergist's office telling me they wanted to move Kaylee's appointment up to April instead of June! At first I was so troubled about how long we had to wait for her to see the allergist, but then I gave it up to the Lord and He took care of it. Thank you Lord! Blessing #1!

Then, oddly, I ran out of Kaylee's antifungal and she started acting better! The past 2 days she has told me over and over she loves me and she hugs and kisses me. Her behavior has been splendid! Because she isn't so upset all of the time, she is more social and telling me everything she observes. Today she said "It's sunny outside, it's a beautiful day!". She even said today, "I'm happy! I'm not crying today. I'm all done crying!" Blessing #2! It looks to me like I need to talk to the doctor about that...

And something new happened today that I don't know if I have ever seen before in Kaylee. She laughed at a joke! This is HUGE. Kids with autism (and usually Kaylee) have trouble processing abstract concepts, especially jokes. Blessing #3!

She is answering questions in a cute and creative way. I asked her today:

"Kaylee, what does a frog eat?"

She exclaimed, "A frog eats...um...chicken!"

Hmmm...I would like to see that one!

Yet Another Mountain to Climb

2009-03-09T13:31:00.000-05:00

I can't believe it! All of my kids are sleeping at once! That never happens...it's nice.

So while I have this free moment I know there are other things I should be doing I wanted to give a quick update about some new developments in Kaylee's treatment.

I have discovered after talking at length with the director at the NY clinic that Kaylee has an allergy problem that needs to be resolved by consulting with an allergist. She told me that Kaylee is one of those 5% of children that have greater issues than most.

*Sigh*

The allergist is 70 miles away, which is great. But now I have to wait until June 8th to see him! That's 3 months away! I cried (there I go again!) when I got off of the phone at their office. I wish I didn't have to wait to get Kaylee the help she needs so badly.

*Sigh again*

Kaylee is doing great if she feels well. IF. If her allergies are bad we have severe behavior problems with her. I just can't figure it out.

But not only is our waiting a problem, but we have to pay for all of her treatments completely out of pocket, and it looks like it will cost us at least $2000. We are already stretched so thin. I don't know how we will do this but we will trust the Lord to provide. He always has been faithful to us. We have seen Him provide miracles for us.

About the treatment we will be doing, it is called sublingual P/N (Provocation and Neutralization). It has to do with allergy drops that eventually help to desensitize the immune system. The nurse at the clinic said that Kaylee's inconsistent behavior is related to her dysfunctional immune system and that if we do this treatment it will "change our lives". I think she is right.

Uh oh, I think I hear one of the kids! So that's all for now. Please keep us in your prayers! We'll keep you in ours :)

When a Mom Can't Make It All Better

2009-03-05T21:42:00.000-06:00

Tonight, I cried...

Most people would think is was about something silly. On the surface, it sounds so...

I cried because I couldn't give Kaylee ketchup with her dinner.

Kaylee cried, too. I know it wasn't about her not getting her way; she was wailing with grief and disappointment. All of the things she couldn't have were adding up on her. For months we have told her "You can't have this" and "you can't have that", slowly taking away all of the foods she loves.

So far we have cut out wheat, milk, egg, chocolate, soy, and most of the sugar. And now, her beloved ketchup.

As she cried I went to her on my knees and cried with her. Inside I understood and felt her pain with her. This poor girl. She is so strong. Who knows what she feels and what she is going through?

And there is nothing I could do to help her pain but hold her and apologize. When I went to her and said "Kaylee, I am so sorry." and held her, her tears soon subsided. But inside me I felt this horrible grief and it won't go away.

It is an agonizing thing me to feel, to watch and know my child suffers and not be able to do anything about it. For over 2 years I have watched Kaylee suffer though autism with sensory issues, anxiety, blood draws, yucky medicines 3 times a day, unable to eat what others eat, loneliness, being misunderstood.

All of these things for a little girl to handle. When I really think about it, I could despair.

So tonight, I laid in bed with her and I prayed over her and told her "Kaylee, I am so proud of you. You are so strong and sweet and I love you so much. God loves you, too and He is taking care of you and giving you what you need to get through this. Someday I know you are going to do great things for Him."

I don't know if she understood me, but I understood in my heart. She is in God's hands and He will care for her, He gave her a Mommy and Daddy who love her enough to do what is right even when it hurts, and will love her and help her through. We may not be able to fix everything, but we will be there.

That's right. He knows exactly what she needs.

Weeping may endure for a night, but joy cometh in the morning. Psalm 30:5

And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away. Revelation 21:4

A cookin' fiend!

2009-03-02T22:46:00.001-06:00

That's me lately...I have been burning things up in the kitchen. My wonderful husband was my hero and helped me late at night, too. (It's really hard to cook while holding an 11-month old.)

Last night we made Gluten free/Casein Free Meat Puffs. I didn't want to put a picture of them up here because they look gross! They taste awful too, but Kaylee loves them and we hide beef, carrots, sweet potatoes, and zucchini in them.

The night before that we made a bunch of GF/CF/Soy free/Egg free pancakes, too. Then I freeze them, because it is so convenient (and necessary!) to have stuff already made and ready to pop in the microwave.

The reason for all this cooking is that I am yet again cutting another ingredient from Kaylee's diet because I have to be totally sure there is not a food allergy going on and that ingredient is soy. And soy is in EVERYTHING! So basically I have to make everything she eats from scratch now. But that's ok. She's more than worth it!

Dr. Russell didn't tell me to do this, he told me he doesn't think her diet is the culprit here for her allergies and the return of her "bad poops". I think he's right but I need to be totally sure. I will be finding more out about that very soon, I believe.

So that is all for now...May God be with you!

A Blessed Day

2009-02-25T22:55:00.001-06:00

Today was one of those days I will always cherish...

I just enjoyed my kids so much. It was warm outside, the sun was shining and the snow was melting. So I decided to take the kids outside to play in the mud.

Then we came in and ate dinner together, and finished it off with some popsicles!

And did I mention it was a tantrum-free day? It was.

Ahh. So this is what "normal" feels like?

I would like some more days like this, please!

And on days like these, I don't mind if I have an extra load of laundry...

Children are an heritage of the LORD: and the fruit of the womb is his reward. Psalm 127:3

Ahhh...the Adventures of Motherhood

2009-02-16T09:27:00.001-06:00

Its been a while since I wrote on here. Things have been crazy, I mean, how does one person get sick twice in one week? When they have kids to propagate germs of course! That was me this week, sick as a dog with a stomach bug and then a bad cold right after.

Anyway, here is a quick update on how things have been. I found out this past week by accident that Kaylee + Zyrtec = Crazy, defiant Kaylee. I took her off of the Zyrtec and her behavior got much better.

But after I took her off of her allergy medicine, she started acting really weird, all hyper, she had hives on her face, and her behavior was still icky. For instance (for those who want to know) I could not ask Kaylee a question because she couldn't answer it without getting upset by saying "yes/no/yes/no". Kaylee also has mushy stools again, which is a clue that there is a food that she is eating and not tolerating. (Most moms of kids with autism end up with a "poop obsession", if you cannot already tell...)

Now that there are more food allergies we have found, it appears that it is an allergy to either chocolate or tomato or both. Poor kid. She has such a limited diet. If I have to cut out anything else I am in trouble. I don't know what she will eat besides plain chicken and boiled water!

I am trying to find things to make up for what she misses now. For instance I just spent a whopping $6 a bag for some stuff called "carob" chips and dairy-free white chocolate chips! I also found some "No-mato" catsup online for $6, too. It's made with carrots. (Yum, right?) We'll see what the verdict is on that soon...

Otherwise, when I cut these allergies out, Kaylee is an angel. I mean, no resisting about anything! She is a joy. In fact, thats what her name is: Kaylee Joy, because we knew that's what she would bring when she came into this world. Oh how I hope and pray things can stay this way! She is so much happier, and I think she feels better.

On a silly note, if you are wondering about what a taste of being a mom of 3 kids of three years and under is like, take a look at a sample of what I sweep off of my dining room floor!

*sigh* A woman's work is never done!

His Grace is Sufficient

2009-02-04T10:26:00.000-06:00

I am back now, and I feel better.

No, this isn't because my circumstances are better. My daughter is still very anxious and I am still waiting for the doctor to get back to me about it.

But I have peace that passes all understanding, thanks to my Heavenly Father. I think I understand now that this is God's will for all of us in our family. But I think of what Paul said when he asked God to remove the thorn from his flesh, but God replied to him (I am paraphrasing) "No, but my Grace is sufficient for you"

The problem with me was, I didn't want to accept God's Will for me at this moment. I fought the reality that was. Yes Kaylee is improving, but we are still working on things and they could be better right now. Like I heard a pastor say on Sunday: "When you are flying on a plane, you can fret and fear all you want... but that plane is still going to land in that destination, whether you like it or not." (Well most times anyway...but thats not the point here)

I used to pray without ceasing "Lord please help Kaylee get better." Now, I still hope and pray for that, but I ask for strength and grace for me, Kaylee, and the rest of the family to be joyful and strong in living with the everyday struggles.

And I know He will supply those things, because He always has in the past. And it is so nice to be joyful again!

*Kaylee loves sleeping with her "baby" every night. As you can see, they have matching blankies :)

Thank you to those who prayed for me.

My brethren, count it all joy when ye fall into divers temptations;
Knowing this, that the trying of your faith worketh patience. James 1:2,3

Feelin' like I'm wilting...

2009-01-31T20:20:00.000-06:00

I have been thinking I should change my blog name from "Blooming where God Plants me" to something else, because lately I have not been blooming, it's more like wilting. I would feel hypocritical and unreal to say that sometimes these neverending challenges and discouragements don't get me down.

Kaylee is doing BAD, behaviorally speaking, and it's really bumming me out. I don't understand what is going on. She was doing great when I cut out eggs from her diet and now I am back where I started.

I would love to put a video clip of how she is acting on here, but I don't want to embarrass her for the sake of me getting some sympathy. Hopefully, someday she would get mad at me for exposing her like that.

Something is very wrong with her and no matter if I am patient with her or if I get mad she is still acting very bad. Her behavior is so bad, I can't play with her, I can't change her diaper, I can't take her anywhere. So if you don't hear from me for awhile on here, now you will know why. Please pray for me.

Training Up Our Children

2009-01-23T08:44:00.000-06:00

These past few weeks have been particularly trying, in respect to Kaylee's behavior. Everything is a fight, and her will is very strong. She doesn't want to do anything she is asked to do.

For example, we took her to a fun McDonald's Play Place this week, and ordered her a burger without the bun which she normally has no problem eating. This time she decided to put up her dukes and not eat. So we left her at the table and she could not play until she ate the burger. She screamed and screamed so we left McDonalds. She screamed more.

But I was still not backing down. She knew exactly what was going on. We went home, and she went in a high chair I placed the burger in front of her and sat with her and told her "I love you Kaylee, you are such a good girl" while she ate that burger with joy.

For those people out there who wonder, is she just a mean and cold person? Why is she telling this story? This is for all of the mama's out there who think that they can't discipline or train their child because they have special needs (or any other excuse...and there are lots of them if you want to find them!) Don't let your child bowl you over because you feel sorry for them or are afraid they don't understand. They need you to be their parent.

Did you know that the bible says if you spare the rod (or do not discipline) you actually hate your child (Proverbs 13:24)? Why would God use such harsh words? Surely we love our children...that is why we do not want to cause them pain...

But the word of God tells us that foolishness is bound in the heart of a child...so should we let them be the boss? No.

God's word also says to train up a child in the way he should go. Do I want my child to continue on her own foolish way? No. I want her to respect and obey. Because if she isn't taught to obey me now, she will not obey me in the future, and surely not her Heavenly Father.

God uses the word hate because we rob our children of their future if we do not train them today. The consequences are great. Our small consequences now can save them from grave consequences in the future. That is why it says in the bible that if we love them, we will chasten them (Prov. 13:24). Even our Lord Jesus Christ chastens those whom He loves (Rev 3:19). Let us be like Him and love and train our children.

This does not mean that we as parents, have to employ spanking always in our discipline, but that we make all of their negative attempts to get what they want counterproductive. An example of this is a child screaming/kicking/crying to get a cookie. If we give in to their bad behavior and give them a cookie, we are actually reinforcing that behavior. When I encounter this from Kaylee, I slowly and kindly say, "No Kaylee, you don't get a cookie when you scream and cry like that. You need to ask nicely next time."

Then I brace myself and ask God for strength and wisdom while she gets upset. I just trust what God says in His word, and I trust that what I am doing is for her good, then I can be strong and handle her "not liking me" for the moment.

If you would like more ideas on disciplining your child, special needs or not, try this book, it has a lot of creative solutions on how to deal with problem behaviors in toddler to teenage years.

Another Piece of the Puzzle

2009-01-15T12:20:00.000-06:00

I have been experiencing too many problems with Kaylee and I knew something has been wrong. She had recently begun taking Singulair for allergies and Lexapro to help restore blood flow in the brain. But Kaylee became hyperactive, excessively irritable (notice I said excessive, she usually has irritability anyways), and I couldn't reach anyone to find out what to do because of the holidays! First I stopped giving Kaylee the Lexapro, and the problems persisted so I discontinued the Singulair.

I just knew something still wasn't right but I couldn't put my finger on it, so to speak. Three days after we stopped the Singulair, Kaylee had hives.

Day after day this kept happening, each day getting worse, with Kaylee's hives getting bigger and her behavior getting worse. She started to get diarrhea and her nose kept on dripping and she was not sick. When I thought about it, I noticed a pattern emerging: it was happening after certain meals...Kaylee never displayed any with foods before, but now everytime she eats anything with strawberries she has an allergic response.

Now that Kaylee's immune system isn't needing to address her viral and yeast issues because of the medications she is on, her allergies are flaring up.

Right now I am scaring myself a bit, because I am wondering if Kaylee needs the Elimination Diet to identify any other possible triggers. Our number one priority in the NIDS Protocol is to cool down the immune system, and if the foods she is eating are causing an immune response, we have to find a way to decrease it. If her immune system continues to act up, and even more difficult, I believe that she may need the Rotation Diet to prevent any new allergies to food.

Maybe I will make a post explaining more about food allergies and more about the basics of immune system function soon. I need to brush up on some of it myself. I believe it is extremely important to understand the immune system if you have a child with autism because it is a key issue, if not one of the most imporant one.

If you want to do some research into food allergies yourself, check out the book Is This Your Child by Dr. Doris Rapp.

In the mean time, may God bless you richly with His wisdom! (James 1:5)
-Jennie

Awwwww!

2009-01-11T14:33:00.000-06:00

Yesterday, a dream came true for me...

Kaylee came up to me and said "I want a kiss" and puckered right up to me!

It gets better...

Then she said "I wuv you."

And there's more!!!!

She sat in my lap and put her head on my chest and let me hold her! I tried not to distract her with the tears in my eyes, I was afraid she would leave and the moment would pass.

The last time Kaylee reached out to me like that, was on a warm summer night and Dan and I went for a walk, and Kaylee was on my shoulders. Then she turned my head toward her and kissed me... That was over 2 and a half years ago. Yesterday, I saw my baby again and my heart is so happy.

Update for 12/30

2008-12-31T00:11:00.000-06:00

Hope ya'll had a Merry and Happy Christmas, we made it, some highs and lows...

Here's a picture of me and my girls, I am happy because at least 2 out of 3 are smiling!!!

For an update, Kaylee has been on Lexapro for a over a week and a half now, and Singulair for 2 and a half weeks, and I have some mixed reviews.

Singulair has taken care of her allergies now. No more night coughing and runny nose. That's good.

Now for the Lexapro, Kaylee is talking more, singing less (her singing was either stimming or boredom?) She is doing better about paying attention, answering questions, she is talking more and now she is less echolalic and actually learning from the Teach2Talk DVDs I bought her that teach her about her pronouns. I practice throughout the day "you" and "me", "his" and "hers" and more, and she is catching on but not all of the time. She is appropriately using "she" and "you" and "my" right now.

The cutest thing she has started doing is addressing people "Come on Momma, let's go..." and now she has decided to boss her little brother around at times like a any big sister should saying "Joey, no!".

It's difficult for me not to get discouraged, because her habits of speaking in the wrong way are ingrained. Kaylee seems to be used to thinking in a way that takes longer to learn. It is as if she speaks language visually and then converts it to an auditory language. Like Temple Grandin calls it: "thinking in pictures".

Something else has emerged in Kaylee, too. I am not sure if she is pretending or scripting, Kaylee is playing with her toys, but she repeats how she is taught to play with things. An example: "Hey, let's go for a ride" with her Little People in cars, but she's missing the creativity we see in most children.

It is overwhelming to think about how many things Kaylee has to learn, when I see Joey learning so easily, just by being exposed to things. How can I possibly teach her everything she needs to know, on top of what else she needs to learn?

On the bad side, Kaylee has been misbehaving like never before. She acts like a girl who needs a nap, but she can't take one. When we sit down to eat she can't sit still, she never used to be that way, all squirmy and wiggly. Yet she lays on the ground tired and sucking her fingers like she's tired.

During Kaylee's bad times, she leaves her momma in tears! She breaks down and gets very upset. She is uncooperative and defiant, and I get scared because I don't know how to handle it sometimes. I just try to stay calm and not back down. She's eatin' those green beans, darn it!

I had finally had it, so I called Dr. Russell's office this morning and to my chagrin, he answered the phone! He told me to stop the Lexapro for a week and rule out the Singulair as the problem.

Sigh, I was looking forward to the Lexapro since before we went to NY, because I knew that was the golden ticket, what really helps the kids. Guess it's more waiting for now...

The Good Shepherd

2008-12-22T18:16:00.000-06:00

Since Kaylee's diagnosis in August of 2007, my life has been an emotional roller coaster. For a year after that I had been going through all of our options for treatment for her from diets to supplements and many more interventions. For so long I just didn't know what to do, there were so many promises everywhere I turned and nothing worked.

Especially today, I walk the line between elation and despair. Every few weeks a new medication comes along with die-offs and reactions and a little growth in some area. And each time I wait on pins and needles, watching for something, some confirmation that says I can can relax now, Kaylee is going to be OK from here on...I am waiting to get to really know her.

And when we have setbacks and die-offs, I fear. I grieve all over again as if it were the day I left the doctor's office with the word autism ringing in my ears.

I am so tired of this roller coaster. How does one hope with all of their heart so badly and not get disappointed? Is that possible? Or because I truly hope, is that just the heartbreaking risk I take?

That is one of the hardest parts of Kaylee's diagnosis I have had to deal with is not being able to just accept autism and move on. Because there is a question of recovery in these children a parent always wonders and hopes their child is that one child that can be helped...therefore delaying the "acceptance" stage.

My wondering has left me stuck in a wilderness of waiting. I always dreamed that Kaylee and I would have a close bond where we could talk about anything for hours, the way my mother and I did. Now I live in an up and down cycle of grief and hope: grief of the loss of a dream for my little girl, and hope that the dream is not gone.

I am so tired, a deep tired that reaches down to my soul. I haven't had peace in a long time. I have been waiting on the edge of my seat, wondering what the next act of this life will be: a road to recovery or time to start accepting. It's so tiring to wonder like that. I have just been surviving, missing many moments with all of my children because of my lack of joy.

Sometimes I wish I could just let go, stop fighting so hard with all that I have, but I am afraid...if I stop fighting for Kaylee, who will fight for her?

As I ask myself this, I close my eyes and I can see my Lord Jesus, He holds out his arms to me and asks "do you trust me?" Isn't that what this is all about? It always comes back to this point: Do I trust Him? He who stopped at nothing to save me from my sins? How could I not trust Him?

I see myself across from Him, holding Kaylee so close, clutching her so hard, afraid to let go. I am afraid if I do I will not get my dream. I am afraid if I let go, I won't get what I want: I want Kaylee to get better. I want to sing and laugh and share with her.

Kaylee is His child, I forget that sometimes. I pray as if I am pleading with God to help my child when He loves her so much. I don't love her anymore than He does. Jesus laid His life down for her, too. I need to trust Him and what He wants to do with His child.

I don't want to fight her Father's will her, I want to trust Him, no matter what. Every morning, I am going to give Kaylee, and my other children to Jesus. I am going to trust Him.

I am the good shepherd:
the good shepherd giveth
his life for the sheep. John 10:11

Terrible twos or autism?

2008-12-18T10:44:00.000-06:00

Recently, I posted that Kaylee was having trouble with tantrums and transitioning, and I attributed it to her having autism. She says "no" when she means "yes" and goes back and forth and can't make a decision. She cries and protests when she can't have her way. She fights for her rights when someone takes her toys.

For many months, Kaylee was in her own world, unable to move forward in her social and cognitive development. Although she was growing physically (even that is arguable, before we adjusted her diet she was very thin and underweight, but today she is in the normal range for her weight) Kaylee was not growing socially, emotionally, and cognitively. Most days all she did was "stim" by chewing on her toys, spin in circles, eat her books, or line up her toys. If someone walked in the room, she never noticed. She really tried to avoid people, especially children.

Now I am going to digress a bit and give you some background, if you are interested. I have a friend in my area who has a son was diagnosed with autism and is the same age and close to the same level of development as Kaylee. She is the one who told me about NIDS and her son has been doing the NIDS Protocol a bit longer than Kaylee and he is responding well. But my friend was discouraged because of all of the behavioral problems she was experiencing with her son, all problems similar to mine with Kaylee.

She spoke with Dr. Russell this week about these issues and he told her to read up on typical 2 year old behavior. He explained that even though our kids are clearer, they missed time while they were stuck in their own world, and they still need to go through those developmental stages. He suggested that many of the problems we were experiencing were behavioral in nature and not greatly related to autism. One clue was that the tantrums weren't the typical autistic "meltdowns" that last a loooong time.

We officially lost Kaylee around 13 months of age, but I suspect she has been slowly getting better for a while now, especially when we changed her diet. Now that she is coming out of her own world, it is as if she is starting where she left off. Kaylee is 3 and a half years old, but she seems like she is just above my son developmentally, who is 21 months old. When I looked up "typical 2 year old behavior" on the Internet, it was like I was reading about Kaylee's struggles. Not being able to make decisions, short tantrums when she doesn't get her way, etc.

Kaylee still struggles with auditory processing, like understanding what people are saying, and echoing things she doesn't understand sometimes. But when she was evaluated we were told that she had the processing of a 2 year old. This seems to support the theory because she has the processing of a 2 year old, she is acting like a child who is 2 years old. It makes sense to me now! Looks like we may be going through the dreaded terrible twos a bit late.

This didn't occur to be a possibility to me before, because Kaylee is my first born and I am not really experienced in child development. And there's nothing like living with it, no education can replace real time experience. I had no idea what was to be expected.

All of this time I have been expecting Kaylee to be exactly where her peers were and sinking into a depression when I compared her to other typical children her age.

The truth is, Kaylee is stimming 95% less than she used to and she wants to play with other children, that's groundbreaking in my eyes! I am very encouraged and now I realize I was mistaken in thinking that Kaylee was going to be totally typical after biomedical intervention. I have had unrealistic expectations... This is going to take time for Kaylee to get better and learn how to act and communicate.

Soon I hope to have good updates concerning Kaylee since we will be giving her the Lexapro this week.

Take care and stay warm!
Jennie

The Next Phase

2008-12-12T09:04:00.000-06:00

This morning I called Dr. Russell's office in Texas, and they told me I didn't have an appointment! I was ready to cry I was so disappointed, every morning this week I was waking up asking myself "is it Friday yet?"

Thankfully, they still worked me in for the appointment this morning (woo hoo!) and I spoke to Dr. Russell and he said he is very pleased with how Kaylee is doing. Kaylee's eosinophilic (a type of white blood cell that is involved with allergies) percentage is still a bit elevated and he said that he wants to address that with Singulair for her allergy symptoms, because the Zyrtec worked, but it makes her irritable.

A side note here: I did do a little "Zyrtec Experiment" this week, reintroducing it to Kaylee every other day, and I saw a difference in her behavior immediately. The next day, no more panic attack when putting on her shirt over her head. Yay! I am not sure why it makes such a bid difference, but it does.

Next week I will be starting Kaylee on Lexapro (a very very small dose, 1 mg a day) and I am really looking forward to that. Dr. Goldberg and Dr. Russell have said this is the major medication that makes a big difference in our children diagnosed with autism because it gets blood flow restored to the parts of the brain that are deprived.

Dr. Russell said he was encouraged and that we seem to be right on track with Kaylee's treatment. Kaylee is doing much better not only physically but cognitively, too. When I told the doctor that I was concerned about her reemerging anxiety, he told me that he sees that very often in our kiddos because they aren't always sure how to handle all of the new input into their world. Consequently, they react with fear at times. Dr. Russell reassured me that he believed the Lexapro would help with that, too.

It's true because Kaylee really is coming out and noticing the world around her. She addresses me "Great job, Mom!" and she wants to see what I am doing. She asks to help me cook dinner (tonight she shredded cheese and helped cook beef) and she tries to help me take care of Joey and Abbie!

I have a funny thing to share, actually...I was feeding Abbie her dinner and walked away to get a napkin to wipe her off and I came back and Kaylee took it upon herself to feed Abbie! I hurried up and tried to get it on camera:

This Story Has Stolen My Heart...

2008-12-04T21:05:00.000-06:00

I just wanted to share this newspaper article I read about a lady who lives near Milwaukee, Wisconsin. She is looking for a family who will take in her grown son with autism and love him.

Aging mom seeks family to love her autistic son

May God bless you richly...
Jennie

Update for 12/3/08

2008-12-04T14:00:00.000-06:00

Recently, I have been espousing how well Kaylee has been responding to the introduction of the NIDS Protocol, and it is true, but we have had some setbacks lately, which have been very discouraging, but I am determined to tell the whole truth and nothing but the truth on this blog!

While it is true that we have seen gains both cognitively and medically, lately Kaylee has been getting difficult again, with many crying spells and difficulty transitioning again. Also, Kaylee has been up at night coughing again with a runny nose for just over a week.

So while the other night I was beside myself with grief thinking we would never figure things out, I was ready to throw in the towel and accept defeat. However, once the clouds cleared up I realized these allergies may be the reason for the behavioral backslide.

Here is my theory: I believe that Kaylee's allergies are starting to surface because of the treatment. In September when we traveled to NY to see Dr. Russell, her bloodwork showed that she had definite environmental allergies but we never saw any signs of them. We were told it was because her immune system was so overtaxed that it couldn't respond with any allergic reactions. It could be that her immune system has had help with her viral infection that now it can attend to the allergies...and I have noticed that Kaylee did start these allergies again when we stopped giving her Zyrtec.

Next week I will be speaking again with Dr. Russell, in the meantime I will be doing a bit of an "experiment" to see if Kaylee's behavior and allergies get better on the Zyrtec. Also, it is possible that we will be entering another phase of the protocol, which is starting Kaylee on a low-dose SSRI (Selective Serotonin Reuptake Inhibitor...say that 3 times fast!) to restore bloodflow and activity to specific areas to her brain. I explained that earlier in my blog with in this post The NIDS Protocol.

I will be explaining more about NIDS in weeks to come because I haven't really heard a thing about it anywhere! It deserves a harder look from people because it has worked for many children. We need to do everything we can to help our kids, and fast. Whatever it takes, we can't just ignore the ever growing need to address the ever growing population of children with "Autism".

God be with you until next time!

Update for 11/17/08

2008-11-17T10:36:00.000-06:00

Kaylee is closing in on 10 days of full strength Diflucan and boy are we all feeling it. Even her teachers (on day 8) at school have called to say that they were having trouble with her too. The main problem is excessive tiredness and lots of tantruming from transitioning. For instance, in church yesterday she decided that she didn't want to go home and threw herself on the ground screaming at the top of her lungs in front of everybody. Lovely!

I was a bit embarrased to say the least, but most of the people in our church know and understand that Kaylee is going through a hard time right now and they are very supportive.

Also a bit of some "spaciness", but even in her bad die-off stage, she is still better than before we started the NIDS protocol! How bout that?

I have decided to temporarily suspend potty training until this time is over, why make things so hard on myself? Right now things are very tiring for all of us as we deal with Kaylee's irritability.

Kaylee hasn't regressed cognitively, even though she is in die-off stage right now. Let me go over some of the strides she has made thus far:

Kaylee is brighter now, she pays attention to me the first time I say something and obeys!
She no longer wakes up in the middle of the night, sleeps much better and longer.
She answers some questions instead of just repeating back answers to us.
Now she puts on her own shoes and attempts to dress herself.
When not in a die-off stage, she no longer has any trouble with transitioning
Kaylee has much more eye-contact and interaction
and most wonderfully, she asks for hugs and kisses now!

I must give credit to the One who lead us to where we are today, who heard our prayers and answered them, even though He didn't have to. Thank you, Father God for being mindful of us.

Autism 101 - Autism for Dummies

2008-11-13T14:28:00.000-06:00

Finding out your child has autism is scary and the information you have to sift through is overwhelming (wow, that word is an understatement!) and daunting. In a short period of time you need to take life's crash course in what autism actually is...then the onslaught of medical, therapeutic, financial, legal information can make your head spin.

First, let me tell you that you should take a breath and let it out. You WILL know what to do and soon, and you will get through this. Give yourself time to digest the information. Don't be hard on yourself!

There is a grieving process you go through, too, but that is a whole other topic that is for another time. But it's critical to know that you can't wallow in your grief and depression for long, your child is depending on you! Now is the time to start taking action. The clock is ticking, and while it's important to weigh all of your options, it is also important to wisely and prayerfully make your decisions.

If you have a child with autism (or any other special need), God has entrusted you with a child who is special and needs you. God will help you and give you strength and wisdom if you ask Him. God loves your child even more than you do and He will be your very present help.

Most of the time, the doctor who diagnosed your child with autism will not give you much hope or help. They will most likely send you on your way and you will feel lost. But don't give up hope! What a blessing we have with the internet! So many people sharing information quickly.

Here are some tips:

1. Beware of charlatans! There are many people out there that say "this supplement cured my child", but they want to make a quick buck off of desperate parents. Don't buy anything until you ask around about it. I have saved a lot of money just asking around people I trust (I call them my "e-friends") Chances are...if it sounds too good to be true, it probably is.

2. Get into a good Yahoo Group about autism (maybe one in your state or just one that focuses on curing autism). This is how you make "e-friends". I know this has been so instrumental for me, I learned so much from other seasoned moms and I had a lot of support. It was so refreshing for me to not feel so alone.

3. Educate yourself! Read some good books not just about "curing" autism but also how to live with it! I will give book recommendations on another post that were instrumental for me.

This is not by any means an exhaustive list of things you should do, but it's a start.

A Word I Never Want to Hear in Heaven...

2008-11-09T14:56:00.000-06:00

What a relief it will be one day when this fight is over...when our children won't be subjected to vaccinations that hurt them and make them retreat into their own world. It hurts me inside to think of how many more children will be afflicted with autism. While our leaders ignore this ever-growing, ever debilitating issue that plagues this generation of families. While doctors turn their heads to the growing evidence of the link between autism and vaccinations.

It will be too soon when I am in heaven and I hope to never hear the word autism again.

Kaylee's Story - Part 3

2008-11-09T11:28:00.000-06:00

Before I begin the next part of Kaylee's story, I must say that this is my story, too. Right now, Kaylee can't tell her story, but I pray that one day she will be able.

My purpose for telling Kaylee's story is not for my benefit, or for some catharsis on my part to make me feel better or self-important. I hope and pray with my heart that I can help someone out there, any other mother finds themselves on this road, too.

Because every book I read about autism made me despair even more. Everything was about cures and spending lots of money I didn't have and no guarantees. No one ever addressed with the real issues I had to deal with everyday, like depression, despair, the alienation from others, the embarrassments I went through.

When I started to suspect something wasn't right with Kaylee, she was 15 months old, I felt so alone. My friends' kids were all talking, playing, and interacting. At church I was embarrassed when she would scream if people came up to us wanting to talk to her. She would look right past them as spoke to her. I was afraid that people would think I was allowing my child to be a unsociable "brat".

I was alarmed and I looked up "15 month old not talking" on the internet and I found a case study of a little girl was was waving "bye" at 12 months saying a few words and lost them. That was Kaylee! Then I saw autism and I felt a stab of horror into my heart. I never though of autism. I used to babysit a boy with autism and all he did was play with string all day and walk on his tip toes. He was 8 years old and had never spoken. "That can't be Kaylee", I tried to reassure myself, but the damage was done. Now I suspected autism and I was scared. As far as I knew, there was nothing I could do about autism.

Kaylee was evaluated by the Early Intervention people soon thereafter and she had more than 40% delays in many developmental areas. When I asked the evaluators if they though she had autism, I could see in their eyes "yes" but instead they told me "it's too early to tell".

We had therapists coming to our home at least everyday. Kaylee started to interact more and we worked hard to teach her sign language and get her to communicate her wants and needs. From 16 months on, I waited and waited for her to speak. I wondered if I would ever hear her voice, if I would ever hear her say "Momma" or "I love you". I so desperately wanted to bring her into our world, so I worked hard to get into hers. I played with her for hours on the floor, read books, sang songs, and tried to find ways to get her to smile at me for anything.

One night I was crying to my husband, afraid she would never speak, and pointed me to this bible verse:

And the LORD said unto him, Who hath made man's mouth? or who maketh the dumb, or deaf, or the seeing, or the blind? have not I the LORD? Exodus 4:11

God could do help Kaylee speak if He willed it. Somehow, knowing all of this is was in God's hands put my mind at ease. I knew that God loved me and He loved Kaylee and He thought this way was best. I had peace again. Even though my heart was grieved I could live with this knowing God was in control.

Update for 11/7/08

2008-11-06T08:09:00.000-06:00

Last week after I spoke with Dr. Russell (by phone appointments now, he is in Texas) we began the anti-fungal phase (Diflucan) of Kaylee's protocol. Today is day 8 and the one major improvement so far is that Kaylee's mushy stools are totally GONE. We were struggling with that again after the anti-viral was introduced and even though she was on the GF/CF diet and probiotic supplementation we saw little improvement. We believe that the use of the antiviral caused the yeast in Kaylee's digestive system to become opportunistic and proliferate at a faster rate, therefore causing the mushy (and stinky!!!) stools.

And it was exactly as Dr. Russell predicted, he told me the antifungal would fix it and it did! So it is safe to deduce that Kaylee did in fact, have a yeast problem in her gut that a low sugar diet did not correct.

Kaylee's sleep is still pretty good, however, she is having some hyperactivity, and I believe this is the beginning of her "die-off" stage. I think we are going to see some irritability again for a few weeks. Being prepared helps me deal with it!

So today, Kaylee is still on Valtrex, and now Veramyst (for allergies) and Diflucan.

That's all for now folks!
-Jennie

Kaylee's story - Part 2

2008-10-31T22:16:00.000-05:00

So we decided to never take Kaylee back to her pediatrician again. But the damage had been done. Kaylee was showing some early signs of autism at 6 months. She was a happy baby, but a little too happy to be by herself. I kept waiting for her to be attached to me. I wanted her to need me. I quit my part-time job so thinking that was the reason why she didn't care whether I was around or not.

Kaylee was mouthing things extensively. She could sit for hours chewing on objects. I thought that was just a "teething" thing, but after having two more babies, I realize that Kaylee's excessive chewing was a red flag I missed.

But, Kaylee was doing well in other developmental areas. She was waving "bye", initiating kisses, reading books, and starting to say words like "ba" for bottle.

She was with us. When I look at her pictures from that time of her life, she looks like she is there with us.

Proof that Kaylee regressed:

Kaylee doing "so big!" at her 1st Birthday Party,

she never did that again...

I remember one of the last times I "saw" Kaylee before her autism took hold. Dan and I were going for a walk on a summer evening, and I had Kaylee on my shoulders and she took my face in her hands, turned it to hers and she kissed me.

But at 13 months, when Kaylee started to walk, she started to slip out of our hands. She never waved again, her few words disappeared. She receded further into herself and began to actually eat her books (the corners were all chewed down!), walk on her tip toes, and line up her toys in the straightest lines I had ever seen. She didn't look in my eyes and smile anymore. The unexplainable sparkle in her eyes was gone.

I kept waiting for the words...yearning to hear her say "Mama!" and hug me and kiss me. "What is wrong with me?" I thought to myself. "Why doesn't my child love me like other kids? Why doesn't she care when I walk into the room?" Never once did autism come to my mind as the problem.

A Happy Halloween!

2008-10-31T21:51:00.000-05:00

Kaylee and Joey went trick-or-treating today...and for the first time, Kaylee actually understood what was going on and had a great time! It was so nice to do a "normal" thing and be like other people. Last year, Kaylee would cry and scream because we kept on going to other people's houses...Was not fun.

But this year, it was a simple joy I never knew I would have, and Kaylee could do it! She didn't cry and she said "trick or treat" and "thank you"!

Joey did great, too! He can't say "trick or treat" yet, but he didn't want to let go of his pumpkin filled with candy...He walked around with his heavy pumpkin and wouldn't let it go to get into his car seat. So much fun!

And here is a cute picture of Kaylee, I loved it so much I had to share it.

Kaylee's story - Part 1

2008-10-29T13:15:00.000-05:00

I have been thinking often about Kaylee's development lately, and how different her beginning is from my other two children. I didn't see the signs in Kaylee because I wasn't experienced yet. There were signs though...

When Kaylee was born almost three and a half years ago, she was born healthy and happy. My pregnancy and labor were uneventful. When she was born she barely cried! She looked surprised at the new world around her. When I first held her in my arms I cried, she was so quiet and perfect. She was content. She nursed with ease. Her Apgar score was 9 out of 10. She was born healthy.

The next day, I was unaware that she had received a Hepatitis B Vaccination and she was inconsolable. She wouldn't nurse anymore, all she did was cry and cry. I was afraid to leave the hospital because I didn't know what to do! When I had asked the lactation consultant why my daughter wouldn't nurse anymore, she asked "did you have an epidural?", and I answered yes and she said to me in a condescending voice, "ohhhh...well that explains it. Her nervous system and sucking reflex are compromised because of your drugs still in her system. Give it a few days and she will be fine."

Soon thereafter, Kaylee developed a rash all over her body for no reason, starting from her back. The doctor told me it was "baby acne", but today, I know that wasn't what was wrong at all. Baby acne lasts for weeks, not 24 hours! They were hives! Kaylee was having an immune reaction to her vaccination, but I never suspected anything.

It took days for Kaylee to eat again, we would do everything to wake her up but she wouldn't. She never wanted to eat. I was scared, especially being a first time mom. Eventually she started to wake up and eat. I never dreamed that she may have had a reaction to her shot in the hospital.

Two months later, her pediatrician gave me an informational sheet from the CDC on Kaylee's immunizations, telling me "don't do any research of your own, just read these pamphlets and make your decision based on those." Well I listened to her, I understood where she was coming from. I didn't want to scare myself. I mean, I had shots before and I was OK.

So I went through with it. Kaylee received 3 shots, one of those that had 3 included in it. Basically, she had 5 at one time. Kaylee screamed and cried and I gave her Tylenol and she slept for 20 hours straight. Why didn't I see it then? That's when she started looking at spinning fans. Today I understand this was a "self-stimulatory" behavior.

Mommy and Kaylee, right after

receiving her shots, we had no

idea what was to come...soon after

she became very sick.

At 4 and 6 months, Kaylee's reactions to her vaccines were much much worse. She screamed uncontrollably for hours and had a fever of 104 degrees or more. She laid in my arms with a blank stare in her eyes. I was afraid she would die. She didn't even have the energy to cry anymore. I called her doctor and asked her "why is this happening and what should I do? She had her shots only a few hours ago and she was OK then!"

Her doctor said to me in an annoyed tone of voice, "I bet she just has an earache. Give her some Tylenol and let her cry it out." I listened to her doctor when I should have taken her to the hospital. I didn't listen to my instincts.

Some doctor. We never went back again. By some way, I just couldn't do it anymore. By God's grace, Kaylee hasn't had a vaccine since. I don't know what would have happened if she would have gone back, I think we could have lost her forever.

For Such a Time as This...

2008-10-26T20:45:00.000-05:00

Today my pastor was teaching out of the book of Esther, and we came to the part where Mordechai, Esther's cousin, was urging her to go to the King and plead for the lives and the preservation Jewish people.

For if thou altogether holdest thy peace at this time, then shall there enlargement and deliverance arise to the Jews from another place; but thou and thy father's house shall be destroyed: and who knoweth whether thou art come to the kingdom for such a time as this? Esther 4:14

God had put Esther in the place He desired her to be in to do His Will, to save His people. He gave her favor in the eyes of the king and the people so that she would become queen. Now it was her time to do what God wanted her to do. He had ordained her for such a time as this. But God wasn't going to do everything for her, she had to take a chance and put her life at risk.

I got to thinking about myself and my job as a wife and a mother. I have, at times, been so discouraged, so grieved about my circumstances. I have told God "I can't handle all of this!"

But today, I realized, that God knew what He was doing, He intentionally, sovereignly allowed these these burdens into my life because He believed that I, and all of the other mothers of children who live with autism, could act for such a time as this. How encouraging that is, to know that God is in control and that He has asked me to simply do a job made just for me:

...young women...be sober, to love their husbands, to love their children. Titus 2:4

This is an encouragement to anyone and everyone out there...God has a job for you and for you only and only you can do it in such a time as this. And as someone wise said somewhere: If God brings you to it, He'll bring you through it. That doesn't mean He'll do everything for you, but He will do everything on His part so that you can do yours.

Grace and Peace to you through our Lord Jesus Christ!

Treatment Progress

2008-10-21T14:55:00.000-05:00

As for a bit of an update, things are still going well here in many ways. I have seen a definite improvement already! I am not sure why or how, but my daughter seems brighter, less foggy. I don't feel like it is so hard to pull her into my world anymore. She helps me around the house, she looks at me and talks to me more, she's making new sentences of her own now. I feel like I am getting to know her more, and I feel very blessed. Dare I say that I feel I am peeking into who Kaylee really is? Before, all she did was "stim", and now I feel like slowly she is coming into our world.

Sleeping is not such a battle anymore. I am pleased to say that she is still sleeping through the night and napping after school. We struggled for a year with that issue. Praise God!

I don't understand how it happened but it is definitely because we started her on the Valtrex. Next we will be starting her on the antifungal phase, which I know will be scary. Right now I will take this, hoping there is a brighter day to come.

To heal or not to heal?

2008-10-14T23:06:00.001-05:00

Recently someone left a comment and implied that it was wrong of me to ask for God to heal my child of autism. They also stated that autism "doesn't need to be healed" and that I need to accept my daughter the way she is.

While I understand where this person is coming from, and I am sorry if these blog posts make you feel like you are different or unwanted because of autism. You aren't, you are special and important to God! I am so sorry for the burden that you have to carry. You must be a courageous and very strong person...

However, you don't know my whole story, either. I know this person may feel like when we are trying to "heal" our children we aren't accepting them or loving them for who they really are...That autism is who they are and they can't get out of that. I suppose that in some cases that may be true. But I do believe that we need to love our children right now and play with them and be with them as they are. My little girl is one of my best friends in the world and I love spending time with her.

But if the work we are doing to help her get better is wrong, why is my daughter getting better with treatments?

My daughter suffers from medical issues, such as immune dysfunction, daily fevers, diarrhea, food sensitivities, yeast overgrowth, and more. My daughter does not have Autism. She is sick! She is so sick it is causing her development to stand still.

My daughter is and has been suffering. She used to scream in pain as I changed her diapers. She cowers in fear over the simplest situations, like washing her hands, or having water run down her head, or playing in the tunnels at McDonalds. She used to be sickly thin and pale due to constant diarrhea and not obtaining the nutrients from her food. While other kids are playing with each other, she is by herself singing. Kids run away from her because all she knows how to do is say "hi" and try to hug them.

My husband and I accepting Kaylee and loving her no matter what but fighting to get into her world and bring her into ours. We love our daughter and even if she still has autistic tendencies and we will still be crazy about her if she stays the same! Just because we are seeking to get her better, it doesn't mean that we don't love her, just the opposite: we are willing to do anything to give her a better life.

Long story short: don't get down on us parents of children with autism, we already have it hard enough. We need help and encouragement.

The plague of Motherly Guilt

2008-10-14T21:23:00.000-05:00

I must begin by apologizing for such drab and flat blog entries lately. I have been so tired lately and being tired really curbs my creativity and I have trouble thinking deeply. I haven't been getting as much sleep as I should and I feel like my list of things to do is neverending.

Not to complain. My life is full of blessings, I am so thankful to not be bored or lonely. But I do feel like I have a nagging sense of guilt that plagues me, thinking of all of the ways I have failed or didn't get everything done that I wanted to. Having three young children I believe it is inevitable to not feel guilty all of the time. Each day I feel like I don't spend enough time with each one and then I scare myself thinking, "My kids are going to grow up unable to form emotional attachments to anyone!" and many more unlikely and scary scenarios.

Now I gather that ALL mom's around the world suffer from this affliction, feeling guilty about what we did do, didn't do, did wrong, and much more. But I imagine that guilt does it's worst damage when we do not address it. Guilt has a way of festering in my heart and eating away and my peace and I don't realize it is there until I am in a bit of a panicked state.

That is when I go to my Master Jesus and I give Him the broken pieces in my life. I know that I can only do so much and leave the rest to Him. He says: Come unto me, all [ye] that labour and are heavy laden, and I will give you rest. Matt. 11:28

In the end, that is all it is about: giving it to Him. Over and over again I trade my sorrows in for the peace that only He can give to me.
Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid. John 14:27

I say, "Jesus, this hurts so bad in my life. The grief of seeing my child like this tears me apart inside." and He tells me, "Come to me, child, I know." Just going to Him may not make everything go away, but He comforts me with His Words. I know He is there...

Update

2008-10-08T17:02:00.000-05:00

It has been a month of Valtrex treatment and thankfully, things are getting better around here. Kaylee is doing well and not as irritable, although she still has low grade fevers in the afternoon, Kaylee's sleep habits are much much better! We have had sleep problems with Kaylee since last November, with night-waking, not falling asleep, and early waking. Sometimes all three problems in one night!

I wanted to wait a little while after things started getting better to make sure it wasn't a tease. (That has happened before and then I breathe a sigh of relief too early.) But things have been going well for about 2 weeks now, at least.

Now, Kaylee is taking naps everyday and sleeping 11 hours a night, too! I am so grateful, because good sleep means a happy kid. And a happy kid means a happy Mama.

Kaylee also seems to be getting "clearer" if that makes sense. She is talking to me now a lot more and not just at me. She looks at me and wants to share with me, and she is much more affectionate, giving me kisses. However, she still has much trouble understanding what is being said to her and has trouble following directions. I'm not sure how much of that is behavioral and how much of that is due to her diagnosis.

We still have lots of issues here, but I am grateful for the gains made already, and each time I give Kaylee her medicine, I hope we are a little bit closer to getting her better.

Tough Times

2008-09-29T13:38:00.001-05:00

Well this is day 20 for Kaylee on Valtrex, and she's still getting worse. Each day since Friday last week has been a rough one. Right now Kaylee is getting very upset over little things and unable to calm down without taking a "break" in her room. She is very emotional and volatile and is acting very tired. Physically, right now Kaylee is experiencing low grade fevers every afternoon.

But may I say, most importantly, Jesus Christ is the same yesterday, today, and forever (Heb. 13:8) Talk about some comforting words.

Recently I have been thinking about how it felt after we found out that Kaylee had autism. It was utterly overwhelming, discouraging, and scary to read about all of the expensive, unproven, and risky treatments that people have tried on their children. I didn't know where to go or what to do! It was a complete whirlwind to me and I lost myself in these questions asking God "What should I do? Should I wait or should I move forward? Which way do I go, God?"

Things changed for me when I looked in my journal almost a year after Kaylee's diagnosis and I realized that I was still asking God the same questions. "God?", I asked, "Why haven't you answered me after all of this time?" He told me "You were asking the wrong question!" Simple as that. All of that time I was waiting for God to supernaturally plop some sort of wisdom into my lap. All of the research, all of the tears, all of the despair were totally fruitless. I had come full circle. One year and still in the same place.

Was all of that time wasted? I don't think so. God is GOD and He has promised that all things work together for good for those that love Him (Rom. 8:28) I do realize that during that time I was not trusting Him and His timing. I was coming to Him with a doubting heart, and how could I hear His voice then?

For a year of endless searching and research, I didn't find anything that kept my confidence. The clock was ticking and I knew this window of opportunity would pass and Kaylee's window would soon be closed. Finally in desperation I took and educated leap of faith and chose to take a chance and try Dr. Russell and the NIDS Protocol. And with a trusting heart I said to God "Please bless our decision, Lord."

Now I am not quick to ascribe something to "supernatural intervention", but everything just worked out. I didn't have to work so hard for this. We had the money to go to New York, we were able to schedule the appointment immediately (most have to wait much longer than we did), and Kaylee's primary doctor was onboard for the treatment (unheard of!) and wrote the orders for her testing (saving us a whopping $3800!).

Now, since we have taken the steps to medically attempt to recover Kaylee from autism, I feel like a part of me has had a peace like I haven't had since the diagnosis. All of this time I have been on the fence about all of these treatments, now I am thankful for the guidance of a doctor who has "been there" and I believe that we have "covered" him in prayers, that God would grant him wisdom and we believe that God answers prayer!

An Answered Prayer

2008-09-22T19:32:00.000-05:00

Hopefully I am not speaking too soon, but I believe that Kaylee is experiencing a "die-off" reaction! Today is day 14 on Valtrex (her antiviral) and she is extremely irritable and on the edge...as if she is getting sick. She also has to be woken up to go to school too, which used to be unheard of!

Now, I know it seems absurd, but this is actually an answer to prayer for me. Two days ago I prayed for some sort of reaction to reassure me so I would feel better about the path we were taking with Kaylee. As Dr. Russell told me, this is a good thing, it means we are on the right track and getting rid of those viruses that have made their oh-so-comfortable home in Kaylee's body, and these viruses are fighting back with a vengeance!

Lately, I have been trying to be so specific with my prayers so that I know when God answers me! I am guilty of praying the general prayers like "Lord, please heal Kaylee from autism if it is your will." Not that there is anything wrong with that, I still pray for that. But now I have faith that God will answer my prayer in the way He sees fit when I ask for something specific. This isn't some formula or ploy to "make" God give you what you want. It's about how you can really see God move then! I am praying for little steps. It makes sense...because when you pray for something specific, believing that your Father hears you, you get an answer quicker, your faith is strengthened, and He feels so close. And that's the best feeling of all.

For this shall every one that is godly pray unto thee in a time when thou mayest be found: surely in the floods of great waters they shall not come nigh unto him.
Psalm 32:6

Blessed be the Name of the Lord

2008-09-18T09:12:00.000-05:00

Lately there has been a black cloud of fear hanging over me, looming over every moment of my life. Somedays I feel as if I am overcome with doubts that discourage me until overwhelmed with I am a title wave of sadness where I can't find my way back out again or remember where it started. I usually try resolve this by either doing more research to find more answers about autism (which I have realized hasn't really ever made me feel better) or by reading God's Word and admitting my fears to Him. If it is quiet and I go to Him, He always answers me.

Thankfully, my husband also seems to know the right things to say to encourage me and make me feel better. I know people say that autism can tear a family apart, but it has only made our marriage stronger, and I thank God for that.

Only time will tell if we are doing the right thing for Kaylee. Honestly, I am scared of disappointment. I don't care so much about the money or time, I care about being out of the "window" of time that we can really help Kaylee have a "normal" life, and that this wont work. Because we are taking this route, we have forsaken many other ways.

I can't even imagine, or maybe I won't let myself imagine, that Kaylee would come out of this shell someday. Sometimes when she looks into my eyes and talks to me, I feel like I can see a glimpse of her, of how things could be.

In a book I read recently by Mike Singletary (yes...the football player!) said "You do your part the best you can, and you leave God to do the rest." That is what I cling to. All I can do is my best based on what I know and what resources God has given me and I know that if it is His will He will bless my efforts.

But no matter what, I will say Bless the Lord. Even if I don't get my heart's desire, I will still say "blessed be the name of the Lord."

I will grieve and I will cry, but I know that my father God still loves me and will give me the grace and strength to get through because He promised His strength is made perfect in my weakness.

Crabby Kaylee :(

2008-09-16T11:15:00.000-05:00

Today is day 8 for Kaylee on Valtrex (an antiviral that specifically addresses the Herpes family of viruses) and she is crabby! I am not totally sure if it is "die-off" but Dr. Russell told me if she would have a die-off reaction it would be at 7-10 days.

Kaylee just doesn't seem like she feels well, and she is getting about 9 hours of sleep a day when I believe she needs at least 12 hours of sleep a day. Last night she slept in our room in her little bed and she kept waking up crying saying in her high pitched voice, "No! Want momma!" I know something is wrong with Kaylee when her voice is at "higher notes", if that makes sense. Her voice is high pitched when she is upset and not feeling well.

Not only are her sleep issues exacerbated, but she "melts down" at the slightest problems or when she is told "no" about anything. It is very tiring emotionally.

I just don't know if it's die off or if she is just not sleeping well, everything is a mystery with autism. I can have a great week and then 12 bad ones with her with no understanding of why.

Anyway, earlier in my blog I shared that Kaylee had a very high HHV-6 IgG titer and here is some info about it if your are interested:

HHV-6 stands for Human Herpes Virus 6 and it causes roseola in children and can be latent and dormant in adults for many years.

HHV-6 is also known to infect and destroy the cells that produce myelin, the fatty coating that surrounds and protects nerve cells. Additionally, the virus demonstrates the ability to cause disruption of the normal functioning of the human immune system.

According to Dr. Michael Goldberg, the founder of the NIDS Protocol, studies have also implicated the temporal lobes in the pathogenesis of autism, and Herpes viruses in humans has long been known to prefer temporal lobe and limbic sites. The NIDS doctors don't believe that autism is caused by a Herpes infection in the brain, but it may contribute to it's manifestation.
Scary!! It makes me so glad we are doing this intervention. I am so tired of her not feeling well or sleeping well. I am praying in faith knowing that God will answer my calls to Him to show us an answer and help us. He is our very present help. His promises always make me smile, even deep down in my soul. It makes me think of this verse:

From the rising of the sun unto the going down of the same the LORD'S name is to be praised. Psalm 113:3

The NIDS Protocol

2008-09-15T11:59:00.000-05:00

Before I delve a bit more into what Dr. Russell's plans are for Kaylee, I thought it would be good to explain the NIDS Protocol briefly. NIDS stands for Neuro-Immune-Dysfunction Syndrome and the theory is that many kids with autism are physically sick and their immune systems are so "hyped up" that they actually cause the brain to go into "shut-down" mode in order to protect it. They explain it like how you get "brain-fog" when you are sick. It's actually the body's immune response to protect its most prized possession: the brain.

So the NIDS doctors do TONS of blood tests and immune panels on our kiddos to see what exactly is going on so they can prescribe the right regimen. This includes the GFCF low sugar diet, antivirals, antifungals, antibiotics (for recurrent Strep infections that can affect the brain), and very low dose antidepressants.

Dr. Russell explained to me why the NIDS doctors use antidepressants while I was in his office. He said that once the immune system is "cooled down" effectively, it is important to restore blood flow to areas of the brain that have "shut down". According to studies using NeuroSPECT scans, children with autism have specific areas of the brain that are hypoperfused (meaning they don't get much blood flow). In autistic children, these scans reveal a lack of blood flow to the temporal lobes and too much blood flow to the limbic system (the center of emotions in the brain). SSRI's (or antidepressants) like Lexapro, Prozac, etc. are effective at restoring blood flow to the temporal lobes, where autistic children need it.

"So why not hyperbaric oxygen treatments?", I asked Dr. Russell. He told me that that the WHOLE brain gets hyperperfused with HBOT and that is not good for all of the "overactive" areas of the brain. With a very low dose of SSRI's blood flow can be restored to specific areas of the brain while ignoring the unwanted areas.

If you want to find out more about NIDS, please refer to my weblinks to the left and you can find even more in-depth information and research about this yourself. Believe me, I don't do it justice!

Not only am I very impressed with the research, I am impressed by the many children who have been helped by this treatment. Everyone at the NNY Autism Center has a child with autism who has been greatly improved or cured by this treatment. The proof is in the pudding!!

Walking into hope

2008-09-15T11:24:00.000-05:00

(Picture is the Black River next to the NNY Autism Center)

Well, it was a week ago we returned from New York after our appointment with Dr. Russell at the NNY Autism Center.

I must say that there is something about having a child with autism that no one else can understand unless they deal with the same struggles, and that is the "shame" we feel when our child acts up or just can't deal with changes or not "getting their way". It hurts when people give you looks at the store...when your child doesn't act like the other kids who can respond when a stranger asks "how old are you" and your child looks at them like they said "ooga booga boo!".

There is something comforting about going somewhere where people accept and understand your child and their limitations. It was wonderful for me to go to a place where I felt like I was walking into hope. I have something I haven't had for a long time: hope.

It's just a glimmer right now. I won't let it burst forth like it wants too. But I am carefully letting a little hope shine on my life right now, and that makes all the difference in my attitude.

With hope, I can deal with just one more tantrum, one more day of autism at a time when I am thinking to myself that this won't last forever, Kaylee will get better someday.

But I digress...I was feeling good when we got to the center, because we would be talking to someone who has been there, and he will help us with our child! (Dr. Russell has a son with autism who has responded greatly to the NIDS protocol. He is mainstreamed and seems to have lost his diagnosis, I believe.)

I was expecting to see some sort of a sterile medical building but I was surprised to see that the autism center was a humble home right on the Black River. Everyone at the office was so kind and patient and it was a relief to me.

After talking to Dan and I, Dr. Russell looked at Kaylee's labs and history and decided that Kaylee was a good candidate for the NIDS Protocol and because of her high HHV-6 titers and other things(more info about this on the next post) he wanted to start Kaylee on an antiviral (Valtrex). He said he expected a "die-off" reaction in 7-10 days.

I will be sharing more soon...
-Jennie

Kaylee today

2008-09-10T13:00:00.000-05:00

I am hoping that soon I will be able to share all of the improvements that Kaylee is making. In order to do that, I am going to paint the picture of how things are today and the specific challenges we are facing. Here are some of Kaylee's issues:

- pronoun reversal
- delayed echolalia
- sleep disturbances
- inability to understand most words (especially abstract ones)
- scripting
- hypersensitive audition
- inability to have a conversation
- inability to make choices
- constant low grade fevers
- toewalking
- irritability
- inability to transition to and from activities without tantruming

Kaylee's blood work shows:

- high lymphocyte count
- low neutrophil count (this combination is indicative of a bacterial infection)
- an active HHV-6 infection (although there are no symptoms present)
- an eosinophilic percentage of 3% (there should be none or a small trace, this is evidence for allergies)
- a high IGe level (also allergy mediated antibodies)
- a very high cholesterol count (205) (possible fungal indicator)
- high blood folate level
- high hematocrit and hemoglobin level (the exact opposite of what I expected!)
- a high NK (Natural Killer) Count

Next we will be talking about what treatment route Dr. Russell is planning on taking with her.

First timer

2008-08-20T21:05:00.000-05:00

This is my first time doing blogging...I am feeling rather self conscious right now. Maybe if I get that out I can move on and talk about something really profound and life changing? Or maybe not.

Maybe I should just pretend as if I am writing to a certain person instead of out into the "great unknown". I mean, who will read this anyway except for people who know me? Okay, now I am feeling better.

Well, here is my purpose for writing this blog. It's simple: I feel compelled to. I think I will learn some new things as I write them down and gain insight through this time.

For those who don't know, my 3 year old daughter, Kaylee, has High-functioning autism. It has completely turned my life upside down. I feel like I have lost my daughter to these idiosyncracies. She's in her own world most of the time, unable to communicate and reply to any sort of a question. She can barely answer "yes" or "no". When she gets home from school, I ask her "How was your day?", she can't answer me. She blankly stares ahead or watches the bus until it rounds the corner unseen as if I weren't even there. I am heartbroken as I watch her at the park, more interested in jumping up and down on the moving bridge than playing with other children. At night when I tuck her into bed, I say "I love you" and I have never heard it said back to me. She heartily replies "Mommy loves you", not having the faintest idea of what it means.

Now I know that God's Word tells me "In every thing, Give Thanks for this is the will of God in Christ Jesus concerning you" However, it doesn't say "For everything", right? Tell me if I am wrong or not, please. I want to be right with God.

Most of the time, I am not thankful for autism. It has stolen my little girl. I am fighting to get her back. I am doing every possible thing I can to ransom her from this monster that has kidnapped her from my very arms that held her tightly, I never imagined that autism would visit our household.

Maybe one day, I will thank God for autism. Maybe it is wrong of me not to sit back and just wait for God to perform a miracle if He so wills it. I don't feel like I have any answers right now.

Based on what I do know, my husband and I have decided to move forward and ask for God's blessing on what we are doing. We are going to seek out medical help for our daughter.

This is the beginning of a new journey with Kaylee. We are going to be implementing two therapies with her in the coming months. One is biomedical and one is neurodevelopmental. I will be documenting her progress and hope that there will be some to document in the coming months.

Stay tuned!