I am just a mom who survived autism recovery with the help of some wonderful people and with my faith in God. My desire is to help other moms survive their journeys too!
Wednesday, March 9, 2011
New Problems Traded for Old Ones
So at bedtime we were talking and with tears in her eyes, Kaylee could barely say to me "I don't have any friends." She sat with a teacher at lunchtime.
Kaylee is still behind in her social maturity and her ability to have conversations with others. Her language skills are very basic, but she has come along way in 2 years. Just 2 years ago she began actually talking TO people and understanding what is being said to her. This summer Kaylee was able to ask questions. Even though Kaylee is doing so well now, we have traded new problems (troubles making friends and fitting in), for old ones (autistic behaviors and illness). Isn't that life? We make it over one mountain only to climb another.
It just feels so unfair, to have this little girl who has been through so much in her short life and to know the obstacles she has overcome to have to live with feeling different.
I was told by other moms who have been through this that the social skills come last in autism recovery. I just hope these skills don't come too late and Kaylee feels self-conscious by then.
But what can I control? Not much. All I could do was hug her and reassure her that she is a great little girl who can make friends.
And give her some extra fruit snacks in her lunch to share with others...
Saturday, February 5, 2011
My Health - A Piece of Kaylee's Puzzle
My story begins in 1998, when I was a senior in High School, I came down with a weird illness and the doctor was not sure what was wrong with me. A number of tests were done to rule out Leukemia, Mononucleosis or pneumonia. I was eventually diagnosed with Epstein Barr Viral Infection. I was told I would recover on my own with rest. My lymph nodes in my neck never went back to their normal size, and for years I would suffer recurrent strep infections and mysterious illnesses that would surface whenever I was under stress.
Shortly after Kaylee was born, I went to my doctor and told him I was so tired and achy. I felt like something was wrong with me. He decided to check my thyroid for an underactive thyroid and also rule out anemia, both tests came out within normal limits. After that nothing else was discussed and soon after I was expecting my 2nd child and then my 3rd child, and believe it or not, I actually felt better during my pregnancies. Now that it has been 3 years since I had my last child, my health has been steadily declining.
Here is my list of symptoms for some time now, with periods of remission (during pregnancies):
• Swollen, painful lymph nodes in my neck
• Constant fatigue, sometimes to the point where I feel sick
• Daily headaches
• Migraines in the middle of the night
• Food allergies
• Achy all over
• Difficulty concentrating, especially for long periods of time
• Stress intolerance
• Exercise Intolerance
• Sleep Disturbances, insomnia
• Unrefreshing sleep (waking up tired and sore)
A few months ago I went to a new doctor and I was diagnosed with Chronic Fatigue Syndrome. Right now there is nothing my doctor can (or WILL) do for my symptoms. If I am careful about what I eat (no wheat or dairy, just like Kaylee), and if I make sure I am always taking Aleve, if I get plenty of sleep and do not push myself too hard physically, I feel relatively ok. But the truth is most of the time I feel sick. There are many more “bad” days than “good”. Everyday is a battle for me, I constantly need rest and I have to be careful about the foods I eat, take Aleve and coffee certainly helps too.
But most importantly, I truly believe that my poor health is definitely a piece of Kaylee’s Autism puzzle. I believe I am sick with the same thing that is affecting Kaylee.
I will explain more about this in my posts to come. I have so much information that I have been working on for many months now and because of my health problems I have found it difficult to organize my thoughts but I will do my best. Please be patient with me as I try to explain what is going on and please ask me questions...email me…anything!
My new email address is itsnotautism@gmail.com for anyone that wants to ask me questions, etc.
Be blessed!
Sunday, January 9, 2011
A Storm I Will Never Forget

Saturday, October 30, 2010
What's Been Going On? So Much!
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!
Monday, January 11, 2010
About Provocation/Neutralization Treatment
Wednesday, December 2, 2009
Yeah...I'm Still Here!
Here are some Halloween pictures of the family, it was great but cold. Of course Kaylee had to be a beautiful "fairy princess", as she called her costume. I haven't shared Kaylee's peculiar preference for dresses and skirts, have I? Well this girl LOVES to look pretty. She prefers dresses and skirts everyday. She will wear pants, but begrudgingly so. I am sure she would wear makeup if I let her.

As for an update, Kaylee is doing so well. Most days we have NO tantrums whatsoever, unless she is exposed to some chemical or allergen, but the right allergen extract shot turns her right back around. I don't know what I would do without those things. Sometimes I have these far out worries that there will be some sort of nuclear holocaust and I will not be able to get Kaylee her medicine...but thats kinda overboard, right?
I want to get some before and after footage on here...but I have most of my older videos burned onto a DVD and I am not sure how to convert it to a file that I can put onto the website. Anyone know how I can do that?
Thats all for now!
Wednesday, November 18, 2009
A Great Discovery In Autism Research
If you are interested in hearing more about this please watch these two brief videos:
Part One:
Part Two:
Tuesday, October 6, 2009
Who would've thought????
But this pumpkin stands for a lot around here. It symbolizes normalcy, living life...the way other people do.
Normalcy is a little something we haven't had in this house for 3 years.
The last three years have been tumultuous, so I didn't really use my energy to decorate for holidays. I just couldn't muster up the enthusiasm. This year is going to be different. Starting now.
Yeah. It's just a pumpkin carved into a jack-o-lantern. But round here, its a new beginning.
*Kaylee and Joey watch Grandpa carve a pumpkin
*Inquisitive kiddos gather round the new creation
Friday, September 18, 2009
Kaylee Prays for the NNY Autism Center
Kaylee has been thanking God for Mommy, Daddy, school or whatever else comes to her mind...but lately, I have been thinking how Kaylee can pray for the NNY Autism Center.
The NNY Autism Center is where we took Kaylee a year ago to see Dr. Bruce Russell, for her biomedical intervention. We flew all the way from Chicago to Buffalo, then drove another 4 hours to get to a small little town called Black River.
I was expecting some sort of big building, all industrial, modern, cold. What I found was completely different. Here in the middle of a small town, was a house made into a modest office where some very special people are helping kids recover from autism, one child at a time.
Inside of this "office" is some of the most extraordinary people I have ever met. Namely Kathy Robertson, the director and nurse practioner. Mrs. Robertson has a grown daughter who has recovered from autism. Many a times I have called her, close to tears, and she has listened and spurred me on to keep going. She helped point me in the right direction when Kaylee's allergies were out of control, helped me figure out what to do when Kaylee regressed due to Hand, Foot, and Mouth Disease.
The people at the NNY Autism Center either make a very small hourly wage or nothing at all. They work hard to earn money through a non-profit organization to help pay for kids to get the treatment they need. In a world of charletons taking advantage of desperate parents with promises of cures, these are people who truly care.
It brings tears to my eyes to think of how they have been there for me, and how they haven't given up even though their treatments aren't what is "famous" right now. I am so grateful for them.
So now every night at bedtime, Kaylee and I pray for the NNY Autism Center, Miss Kathy, Miss Sheri, and Dr. Bruce, that God would bless them mightily, provide money for them, and bless their families. For now, Kaylee doesn't really understand why we pray this way, but I know one day she will...
Wednesday, September 9, 2009
Two Anniversaries!

and Kaylee's one year anniversary since we went to New York to help heal her "autism". What a roller coaster ride it has been for us, but so well worth it.
Things are going great lately, I just started a part time job doing data entry at home so I am even more busy than I was before. I don't want this blog to be a place where I blabber on about my life, but I record some of my experiences and how I got through them to help others. But most of all, I am having trouble trying to express what I want to say on this blog, and lately I have been battling discouragement with it. I wonder if it really makes any difference if I write in it. At least now I can remember everything we have gone through in this journey, though.
Kaylee is doing so well, I took her in for speech therapy (actually its "language therapy") because she has some difficulties saying things she wants to say (her syntax is off, for example), but all in all she is much much better. The transformation in her from one year ago is almost unbelievable.
An interesting thing happened with Kaylee's speech therapy that I have mixed feelings about, Kaylee's speech therapist told me she had never seen a child with autism recover like Kaylee has. In fact, she told me she thinks autism is overdiagnosed and she doubted that Kaylee even had autism. She went as far as questioning whether a doctor had diagnosed Kaylee with autism...
Two years ago this past August a developmental pediatrician diagnosed Kaylee with autism and sent us on our way. This doctor told me there was nothing we could do about it, no "cure", and she could not even tell me how severe Kaylee's autism was, because she said it was hard to tell but she said Kaylee easily fit the diagnosis for autism. I will never forget the look in her eyes, I could tell that she knew what we were in for...I wondered how she could have a job like this; "breaking the news" to parents that will start them on a difficult journey without much help or hope along the way. Yet another child lost to this monster we call "autism".
But I digress, I was actually quite mad about what the speech therapist said. Dan and I have been through the fire these past two years after the diagnosis, dealing with tantrum-filled days, sleepless nights, and a child who was totally in her own world. We have spent thousands of dollars to get her back. We want other parents to know that AUTISM ISN'T REALLY AUTISM. These kids are sick and they need help: medical help!!!!!!
My daughter did have autism, and it's great that even an experienced professional can't recognize it anymore, but unfortunately it still supports the ignorance that exists and the belief that autism isn't treatable when in fact, it is. These kids are sick, they are unhappy, and they have incredible strength to get through the day and do the simplest things. My heart breaks for them. People need to WAKE UP before we lose more children!! And trust me, we will. Things are not getting better. Now a recent study has shown that 1% of children have autism.
So even if I feel like this blog isnt reaching a lot of people in a Jenny-McCarthy-like magnitude, at least it may help one child, one day, to get the help they need, and in that case it will be well worth the work.
Tuesday, July 28, 2009
Update Time!
I should really update how things are going with Kaylee. They are great! I have been playing detective with her though. Kaylee's immune system is "exquisitively sensitive" as her nurse practitioner in NY told me last week. For instance, if Kaylee deviates from her limited diet right now with a piece of pizza or a hash brown from McDonald's (yes we had quite a time after that) she has potty problems and an impossible attitude and her stim behaviors return.
We have also figured out that some of her allergy extract shots were not helping but hurting her progress. I wasn't sure what to do and I prayed for God's wisdom and started removing ones I felt might be the culprit and I was right! Oh the Lord doth give wisdom liberally to those who ask! (James 1:5)
If Kaylee has a good day with no dietary issues and her shots are all ok, she is a dream child. Well behaved and so talkative and easy. I have wanted to shout from the rooftops about how well she is doing! If I were to take her to a doctor today I believe that she would no longer have the autism diagnosis. She does not fit the DSM IV criteria!
Our only issues now is her catching up to her peers and making sure we keep her immune system cooling down and modulated.
What a far cry from a year ago.
I tell everyone I know about what we are doing. I hope that people will listen when I tell them my child is being healed! And there are many others! Why won't people listen? I don't understand. Living with autism has been a nightmare, one of the worst things that could happen to my child. It is harder to live with it than to try and get her better. Yes this road has been hard, all of these treatments but we are on the other side now.
I try not to get discouraged. Not everyone will hear and want to do what we are doing for Kaylee, and that's okay. But really, no one has wanted to listen.
And I feel much sorrow out there for the children who have to suffer not only physically but emotionally and mentally too.
Well thats not the best writing I have ever had, but that's what's on my mind tonight. God bless you with wisdom and strength!
Sunday, July 5, 2009
"Soul Work" Article
I am ashamed to say I ask those questions. Just when I think I get out of my rut, something else happens and I am asking God "why?" all over again.
In fact, today I am laying on my couch while everyone else is at church because I am in pain yet again. It comes and goes and all I can do is rest and not move for awhile until it dies down. I have been dealing with this for almost 3 months now.
This morning, I came across this article, it's by Chuck Swindoll's daughter, Colleen. She has a son who has autism, too. I really appreciate how real she is about her struggles and the way she deals with the overwhelming difficulties she has faced in raising a child with severe autism and a number of other diagnoses. I hope you will take the time to read it because it will bless you, even if you don't have a child with special needs.
Friday, July 3, 2009
Keepin' My Eyes on Him
Instead, two years ago, I spent countless hours hunting for a cure for autism in front of this illuminated computer screen. I had amassed hours and hours of lost sleep searching and searching for an answer. THE answer. All of my investigating did not avail me an answer I believed was true.
One night, I awoke at 3AM to another night of Kaylee singing to herself, laughing hysterically at who knows what. Something is wrong! This is NOT how its supposed to be... I thought to myself as I gingerly left my bed trying not to wake up my husband with my weeping.
Her laughter felt so cruel to me, so paradoxical to how I was feeling inside. So disconnected from the rest of the sleeping world around her.
So I wrote my prayer to God, I sobbed until I felt weak. I knew there was an answer. Or maybe I couldn't believe there wasn't one?
Then, there was silence. My mind was quiet.
In that silence I heard something from inside. I heard "Keep your eyes on Me."
But I knew if there was such a solution to the dilemma that God would have the answer for it and He could bring it to me if He wanted to. I didn't have to look. I had to let go and let Him bring me the answer.
In that moment, I knew He could, and He would.
The truth was, He already had. I wasn't ready for it yet! I had my own preconceptions about what was wrong with Kaylee, I wouldn't listen when a friend told me about NeuroImmune Dysfunction Syndrome. I had never come across it before and it wasn't "DAN" (Defeat Autism Now - the most well-known biomedical autism school of thought today) and they used medications, which I was uncomfortable with.
It took a few months but I had run out of treatment options and I decided to give NIDS another look. Now, in my desperation, the NIDS theory seemed to make sense to me.
Everything "worked out" and we took Kaylee to the NNY Autism Clinic 3 weeks later.
Since then I have watched my daughter come out of her world and into mine and I have thought to myself with a chuckle "You found me, Lord. You brought the answer to me." All of my fretful research-hours were wasted ones. I should have just kept my eyes on Him!
Tuesday, June 30, 2009
The ATEC
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.
Monday, June 8, 2009
Kaylee is 4 now! And a whole lot different...

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!
Friday, May 29, 2009
What if it's not Autism Presentation
Wednesday, May 20, 2009
Why we think this allergy treatment will help Kaylee
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*
Sunday, May 10, 2009
What is this new allergy treatment? Part 1
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 a

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!
Tuesday, May 5, 2009
Kaylee's Allergy Treatment Update
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!
Sunday, April 19, 2009
Why my Child?
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...