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.

A Happy Halloween!

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

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...

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

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?

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

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

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.