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...
Friday, September 18, 2009
Wednesday, September 9, 2009
Two Anniversaries!
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.
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.
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