My Health - A Piece of Kaylee's Puzzle

This is out of my comfort zone for me, but if I didn’t think it was important or relevant I would not have shared my personal health problems. Maybe my sharing what I am going through will help so many moms who are doing a nearly impossible feat raising (or even recovering) their child with autism and they are under the impression that their poor state of health is due to lack of sleep and stress. But for many moms it is much more than that.

My story begins in 1998, when I was a senior in High School, I came down with a weird illness and the doctor was not sure what was wrong with me. A number of tests were done to rule out Leukemia, Mononucleosis or pneumonia. I was eventually diagnosed with Epstein Barr Viral Infection. I was told I would recover on my own with rest. My lymph nodes in my neck never went back to their normal size, and for years I would suffer recurrent strep infections and mysterious illnesses that would surface whenever I was under stress.

Shortly after Kaylee was born, I went to my doctor and told him I was so tired and achy. I felt like something was wrong with me. He decided to check my thyroid for an underactive thyroid and also rule out anemia, both tests came out within normal limits. After that nothing else was discussed and soon after I was expecting my 2nd child and then my 3rd child, and believe it or not, I actually felt better during my pregnancies. Now that it has been 3 years since I had my last child, my health has been steadily declining.

Here is my list of symptoms for some time now, with periods of remission (during pregnancies):
• Swollen, painful lymph nodes in my neck
• Constant fatigue, sometimes to the point where I feel sick
• Daily headaches
• Migraines in the middle of the night
• Food allergies
• Achy all over
• Difficulty concentrating, especially for long periods of time
• Stress intolerance
• Exercise Intolerance
• Sleep Disturbances, insomnia
• Unrefreshing sleep (waking up tired and sore)

A few months ago I went to a new doctor and I was diagnosed with Chronic Fatigue Syndrome. Right now there is nothing my doctor can (or WILL) do for my symptoms. If I am careful about what I eat (no wheat or dairy, just like Kaylee), and if I make sure I am always taking Aleve, if I get plenty of sleep and do not push myself too hard physically, I feel relatively ok. But the truth is most of the time I feel sick. There are many more “bad” days than “good”. Everyday is a battle for me, I constantly need rest and I have to be careful about the foods I eat, take Aleve and coffee certainly helps too.

But most importantly, I truly believe that my poor health is definitely a piece of Kaylee’s Autism puzzle. I believe I am sick with the same thing that is affecting Kaylee.

I will explain more about this in my posts to come. I have so much information that I have been working on for many months now and because of my health problems I have found it difficult to organize my thoughts but I will do my best. Please be patient with me as I try to explain what is going on and please ask me questions...email me…anything!
My new email address is itsnotautism@gmail.com for anyone that wants to ask me questions, etc.

Be blessed!

A Storm I Will Never Forget

Last week I had a certain dream, and when I had the chance to reflect on it, I knew it was something important, that maybe God was trying to reveal something to me.

I had a dream that I was back in my old apartment, the one we had lived in before Kaylee was diagnosed with autism. I was looking outside the window and I saw black clouds boiling in the distance. A horrible storm was coming and we were in it's destructive path.

Turning to Kaylee, I told her to run and hide...hurry! But she didn't even hear me, just like the days when she was at the height of her illness. I was struck with fear to see her this way again, and I was totally helpless to stop this impending disaster about to hit the lives of my family.

Later on I reflected on this dream and when I wrote out what happened it was clear to me that this storm was Autism about to hit our lives. Although I am relieved to know that our storm has passed, I know there are other families out there in their own storms, waiting them out, seeking shelter in biomedical protocols and doctors visits and therapies that never end. They are hoping that *this* time, *this* intervention is their way out.

I haven't forgotten these families. I am praying for the way out for them too. I think the way out is almost here. All I can say is Hold on! The answer is almost here! Even if I don't know you I pray for you everyday. I am not going to stop until there is a way out for all of us. I know that God doesn't want me forget, either.

Who would've thought????

...that a simple pumpkin could mean so much?


But this pumpkin stands for a lot around here. It symbolizes normalcy, living life...the way other people do.

Normalcy is a little something we haven't had in this house for 3 years.

The last three years have been tumultuous, so I didn't really use my energy to decorate for holidays. I just couldn't muster up the enthusiasm. This year is going to be different. Starting now.

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

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...

"Soul Work" Article

Did you ever feel mad at God? Did you ever question Him, feel like He was cruel to you because of your circumstances? Because of the unfairness of your child's disability? Did you ever feel like God's expectations of you were too much? Did you ever feel like God's grace wasn't enough for you to get through?

I am ashamed to say I ask those questions. Just when I think I get out of my rut, something else happens and I am asking God "why?" all over again.

In fact, today I am laying on my couch while everyone else is at church because I am in pain yet again. It comes and goes and all I can do is rest and not move for awhile until it dies down. I have been dealing with this for almost 3 months now.

This morning, I came across this article, it's by Chuck Swindoll's daughter, Colleen. She has a son who has autism, too. I really appreciate how real she is about her struggles and the way she deals with the overwhelming difficulties she has faced in raising a child with severe autism and a number of other diagnoses. I hope you will take the time to read it because it will bless you, even if you don't have a child with special needs.

Soul Work by Colleen Swindoll

Keepin' My Eyes on Him

I could have saved myself a lot of trouble. I could have trusted Him in the first place.

Instead, two years ago, I spent countless hours hunting for a cure for autism in front of this illuminated computer screen. I had amassed hours and hours of lost sleep searching and searching for an answer. THE answer. All of my investigating did not avail me an answer I believed was true.

One night, I awoke at 3AM to another night of Kaylee singing to herself, laughing hysterically at who knows what. Something is wrong! This is NOT how its supposed to be... I thought to myself as I gingerly left my bed trying not to wake up my husband with my weeping.

Her laughter felt so cruel to me, so paradoxical to how I was feeling inside. So disconnected from the rest of the sleeping world around her.

So I wrote my prayer to God, I sobbed until I felt weak. I knew there was an answer. Or maybe I couldn't believe there wasn't one?

Then, there was silence. My mind was quiet.

In that silence I heard something from inside. I heard "Keep your eyes on Me."

But I knew if there was such a solution to the dilemma that God would have the answer for it and He could bring it to me if He wanted to. I didn't have to look. I had to let go and let Him bring me the answer.

In that moment, I knew He could, and He would.

The truth was, He already had. I wasn't ready for it yet! I had my own preconceptions about what was wrong with Kaylee, I wouldn't listen when a friend told me about NeuroImmune Dysfunction Syndrome. I had never come across it before and it wasn't "DAN" (Defeat Autism Now - the most well-known biomedical autism school of thought today) and they used medications, which I was uncomfortable with.

It took a few months but I had run out of treatment options and I decided to give NIDS another look. Now, in my desperation, the NIDS theory seemed to make sense to me.

Everything "worked out" and we took Kaylee to the NNY Autism Clinic 3 weeks later.

Since then I have watched my daughter come out of her world and into mine and I have thought to myself with a chuckle "You found me, Lord. You brought the answer to me." All of my fretful research-hours were wasted ones. I should have just kept my eyes on Him!

Kaylee and Mommy Update (A long-winded post)

When I have been thinking about what to post on my blog lately, I feel like I am a dry well. Not because things aren't happening, but because I am totally and utterly spent. For weeks I have been in survival mode. My creative juices were drying up and I felt like I couldn't write a good post. Exhaustion and a perfectionism like that make for a no-posting kind of blog.

I have been determined not to make this a place where I vent and complain about my circumstances, my purpose for this blog is to honestly document my journey in living with and attempting to heal my daughter's autism.

So here is an update of whats going on: Kaylee is doing great! I can't say it enough. She is so easy to get along with, tantrums are nonexistant, she is effortlessly potty-trained, she's happy, interacting, playing, in the "that's mine!" stage.

As for me, I am struggling. This story started over two months ago, Kaylee's behavior was impossible and I was frazzled. Every free moment I was either taking Kaylee to stressful allergy testing appointments, attempting to cook new foods for her (and failing) and there were many other commitments I was trying to keep, besides caring for 3 very young children.

I was so stressed out I felt like I couldn't rest. Even if I was sitting still, I felt worried and wound up. I felt like I was always on the edge.

I felt so alone, I had no peace. When I read the bible it felt like hollow words to me. The words of my prayers seemed to drop like cement the minute they left my lips. I felt weary and burdened.

I remember telling Dan, my husband, I had this vague sense that something was really wrong with me, but I couldn't figure out what exactly it was. A few days later a peculiar rash appeared on my legs, and my feet swelled up. I was concerned but when I woke up the next day the rash had gotten worse and spread.

I went to the doctor and finally after many tests they figured out that I had vasculitis. That means my immune system was attacking my own blood vessels. The doctors had to check me for some serious diseases, like lupus and cancer, which came out negative. It was quite a scare for me.

But even today, 6 weeks later I am left with the aftermath of this illness. I have very painful sores on my legs and feet and its very difficult for me to get through each day. I have to go to wound care specialists a few times a week, because my skin isn't healing very well.

I am not sharing this to get pity, I am just trying to be real about what my life has been like. Times have been hard lately. The most difficult part was when I felt like God was so far away. The truth is, it was me who was far away.

It occured to me though, that everyone goes through hard times. As far as I know, the death rate is 100%. Everyone's health fails at some point in their life. Being a christian does not save me from trials and troubles. That is a far cry from what some of the pastors are preaching today. How disappointed are so many people when God doesn't give them what they want or when He doesn't save them from their circumstances? How many will have a love that waxes cold because they only know the gifts and not the Great Giver?

I think these circumstances brought me to a new level of fellowship with God. I feel pleasantly broken. Yes, that's the best way I could put it. I was very humbled by my circumstances and I reached out to God and accepted with joy, His will for me at this time. After that I felt so free!

The Good Lord is forcing me to rest (I have to have my feet up as much as possible). He is forcing me to trust Him. He is forcing me to ask Him for strength to get through each day (sometimes its each hour). He is forcing me to reassess my priorities. Yes I may have sticky floors and two bathroom sinks that need cleaning. I am learning to be okay with that.

Gee I think I have been all over the place on this post. I apologize. It's the best I could do right now.

Why my Child?

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...

His Grace is Sufficient

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

Kaylee's Story - Part 3

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.

Kaylee's story - Part 2

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.