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!
Tuesday, July 28, 2009
Sunday, July 5, 2009
"Soul Work" Article
Did you ever feel mad at God? Did you ever question Him, feel like He was cruel to you because of your circumstances? Because of the unfairness of your child's disability? Did you ever feel like God's expectations of you were too much? Did you ever feel like God's grace wasn't enough for you to get through?
I am ashamed to say I ask those questions. Just when I think I get out of my rut, something else happens and I am asking God "why?" all over again.
In fact, today I am laying on my couch while everyone else is at church because I am in pain yet again. It comes and goes and all I can do is rest and not move for awhile until it dies down. I have been dealing with this for almost 3 months now.
This morning, I came across this article, it's by Chuck Swindoll's daughter, Colleen. She has a son who has autism, too. I really appreciate how real she is about her struggles and the way she deals with the overwhelming difficulties she has faced in raising a child with severe autism and a number of other diagnoses. I hope you will take the time to read it because it will bless you, even if you don't have a child with special needs.
I am ashamed to say I ask those questions. Just when I think I get out of my rut, something else happens and I am asking God "why?" all over again.
In fact, today I am laying on my couch while everyone else is at church because I am in pain yet again. It comes and goes and all I can do is rest and not move for awhile until it dies down. I have been dealing with this for almost 3 months now.
This morning, I came across this article, it's by Chuck Swindoll's daughter, Colleen. She has a son who has autism, too. I really appreciate how real she is about her struggles and the way she deals with the overwhelming difficulties she has faced in raising a child with severe autism and a number of other diagnoses. I hope you will take the time to read it because it will bless you, even if you don't have a child with special needs.
Friday, July 3, 2009
Keepin' My Eyes on Him
I could have saved myself a lot of trouble. I could have trusted Him in the first place.
Instead, two years ago, I spent countless hours hunting for a cure for autism in front of this illuminated computer screen. I had amassed hours and hours of lost sleep searching and searching for an answer. THE answer. All of my investigating did not avail me an answer I believed was true.
One night, I awoke at 3AM to another night of Kaylee singing to herself, laughing hysterically at who knows what. Something is wrong! This is NOT how its supposed to be... I thought to myself as I gingerly left my bed trying not to wake up my husband with my weeping.
Her laughter felt so cruel to me, so paradoxical to how I was feeling inside. So disconnected from the rest of the sleeping world around her.
So I wrote my prayer to God, I sobbed until I felt weak. I knew there was an answer. Or maybe I couldn't believe there wasn't one?
Then, there was silence. My mind was quiet.
In that silence I heard something from inside. I heard "Keep your eyes on Me."
But I knew if there was such a solution to the dilemma that God would have the answer for it and He could bring it to me if He wanted to. I didn't have to look. I had to let go and let Him bring me the answer.
In that moment, I knew He could, and He would.
The truth was, He already had. I wasn't ready for it yet! I had my own preconceptions about what was wrong with Kaylee, I wouldn't listen when a friend told me about NeuroImmune Dysfunction Syndrome. I had never come across it before and it wasn't "DAN" (Defeat Autism Now - the most well-known biomedical autism school of thought today) and they used medications, which I was uncomfortable with.
It took a few months but I had run out of treatment options and I decided to give NIDS another look. Now, in my desperation, the NIDS theory seemed to make sense to me.
Everything "worked out" and we took Kaylee to the NNY Autism Clinic 3 weeks later.
Since then I have watched my daughter come out of her world and into mine and I have thought to myself with a chuckle "You found me, Lord. You brought the answer to me." All of my fretful research-hours were wasted ones. I should have just kept my eyes on Him!
Instead, two years ago, I spent countless hours hunting for a cure for autism in front of this illuminated computer screen. I had amassed hours and hours of lost sleep searching and searching for an answer. THE answer. All of my investigating did not avail me an answer I believed was true.
One night, I awoke at 3AM to another night of Kaylee singing to herself, laughing hysterically at who knows what. Something is wrong! This is NOT how its supposed to be... I thought to myself as I gingerly left my bed trying not to wake up my husband with my weeping.
Her laughter felt so cruel to me, so paradoxical to how I was feeling inside. So disconnected from the rest of the sleeping world around her.
So I wrote my prayer to God, I sobbed until I felt weak. I knew there was an answer. Or maybe I couldn't believe there wasn't one?
Then, there was silence. My mind was quiet.
In that silence I heard something from inside. I heard "Keep your eyes on Me."
But I knew if there was such a solution to the dilemma that God would have the answer for it and He could bring it to me if He wanted to. I didn't have to look. I had to let go and let Him bring me the answer.
In that moment, I knew He could, and He would.
The truth was, He already had. I wasn't ready for it yet! I had my own preconceptions about what was wrong with Kaylee, I wouldn't listen when a friend told me about NeuroImmune Dysfunction Syndrome. I had never come across it before and it wasn't "DAN" (Defeat Autism Now - the most well-known biomedical autism school of thought today) and they used medications, which I was uncomfortable with.
It took a few months but I had run out of treatment options and I decided to give NIDS another look. Now, in my desperation, the NIDS theory seemed to make sense to me.
Everything "worked out" and we took Kaylee to the NNY Autism Clinic 3 weeks later.
Since then I have watched my daughter come out of her world and into mine and I have thought to myself with a chuckle "You found me, Lord. You brought the answer to me." All of my fretful research-hours were wasted ones. I should have just kept my eyes on Him!
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