It has been two weeks since returning from Rhinebeck, New York to finally see a DAN! doctor. My sister gave us a book written By Dr. Kenneth Bock http://www.4ahealing.com/booklanding.html. We basically had to beg, borrow and steal to get there, but get there we did. I cannot say that we are none the worse for wear, however. We are still recovering.
Lib was diagnosed with autistic spectrum disorder at 20 months of age. Our story is a familiar one by now: Normal developmental milestones, healthy pregnancy, delivery, then......the MMR at 13 months, then the ear infections and antibiotics and at 17 months...eating down to nothing but graham crackers, no eye contact, no speech, etc. We have spent the last four years with therapists in and out of the house, then into the ESE school system, and now, finally getting to biomedical treatments for him. Lib has never developed speech, only a few words that seem to come and go. He just turned five years old in July and I panicked. Would he have gotten better if I had just gotten him to a DAN! doctor sooner? I'll never know.
The trip to NY on the airlines was okay. Liberty wore his headphones and he was fine. (He is doing therapeutic listening http://www.vitallinks.net/). It was the 5-day stay in the motel, however, that took a few years off our lives. The first night Lib was so wound up he bounced around the motel room until 5 AM. One night shortly before we left, my husband and I wound up driving him around the parking lot of Wal-mart at 1:30 AM to get him to calm down and go to sleep (and to prevent the Marriott from throwing us out). Usually extremely good-natured and easy going, this trip was asking way too much of Liberty.
Our first appointment with Dr. Bock lasted three hours and the doc actually read every word I wrote on the 15 page intake form! This has never happened before in all of my dealings with doctors. The next day, we learned how to give Lib his first methyl B-12 shot. We also went in for labs which was hell-on-this-earth and they were unable to get hardly any blood. The lab tech said that he was dehydrated (he had to be on a 12-hour fast); at one point she commented that she "blew a vein." The child was screaming while my husband held him down. We were sent home with prescriptions for blood tests and Lib's arm was black and blue. (I later learned that we have about 16 tubes of blood yet to siphon from the child). We have about 900 bucks worth of tests left to complete. The trip was not cheap but I have filed everything I can with our insurance, hoping we might get something back. Dr. Bock was wonderful, so I do feel satisified that we were able to get Liberty under his care.
To top the whole experience off, the trip home was a nightmare. Lib screamed on the way back to Atlanta, something new for him. He got up in my face and opened his mouth so wide to scream that I could see his tonsils. People on the plane turned and glared. My husband was able to calm him down as I was so worn out, I just broke down in tears, too. There was an older man sitting behind me who touched my shoulder and told me everything would be alright. Thank God for the kindness of strangers.
We made it throught that leg of the trip but when we got to Atlanta, the departure gates were entered wrong on the flight boards, so we trecked into the bowels of the airport and back twice. Next, they cancelled our flight altogether. We then stood in line for two hours praying we could find a flight as we ran out of diapers and food. Lib has been on a gluten free/casein free diet for almost three months, and I knew there would be no food we could just grab anywhere. It was like being in the Twilight Zone on a trip that would never end. Eventually, by the Grace of God we got home around 3 AM. Lib ran around the front yard in the rain yelling, "Yay, yay!"- about the only thing the little guy can say.
In the past few months of clicking around on the internet, I have learned so much from other mom's and their blogs...not only about treatments that have worked for them, or what's going on in the autism community, but especially in the realization that I am not alone in my feelings. That there are others who have experienced the same kinds of frustrations, sadness, insight, joy, rage, etc. Once, after I thanked one Mom for her help, she said sharing our common experience of raising special needs kids makes us kind of related. That feels right to me.
So, in sharing my personal journey with our son, my hope is that we can all be of help to each other in some way.
Namaste.
Lib was diagnosed with autistic spectrum disorder at 20 months of age. Our story is a familiar one by now: Normal developmental milestones, healthy pregnancy, delivery, then......the MMR at 13 months, then the ear infections and antibiotics and at 17 months...eating down to nothing but graham crackers, no eye contact, no speech, etc. We have spent the last four years with therapists in and out of the house, then into the ESE school system, and now, finally getting to biomedical treatments for him. Lib has never developed speech, only a few words that seem to come and go. He just turned five years old in July and I panicked. Would he have gotten better if I had just gotten him to a DAN! doctor sooner? I'll never know.
The trip to NY on the airlines was okay. Liberty wore his headphones and he was fine. (He is doing therapeutic listening http://www.vitallinks.net/). It was the 5-day stay in the motel, however, that took a few years off our lives. The first night Lib was so wound up he bounced around the motel room until 5 AM. One night shortly before we left, my husband and I wound up driving him around the parking lot of Wal-mart at 1:30 AM to get him to calm down and go to sleep (and to prevent the Marriott from throwing us out). Usually extremely good-natured and easy going, this trip was asking way too much of Liberty.
Our first appointment with Dr. Bock lasted three hours and the doc actually read every word I wrote on the 15 page intake form! This has never happened before in all of my dealings with doctors. The next day, we learned how to give Lib his first methyl B-12 shot. We also went in for labs which was hell-on-this-earth and they were unable to get hardly any blood. The lab tech said that he was dehydrated (he had to be on a 12-hour fast); at one point she commented that she "blew a vein." The child was screaming while my husband held him down. We were sent home with prescriptions for blood tests and Lib's arm was black and blue. (I later learned that we have about 16 tubes of blood yet to siphon from the child). We have about 900 bucks worth of tests left to complete. The trip was not cheap but I have filed everything I can with our insurance, hoping we might get something back. Dr. Bock was wonderful, so I do feel satisified that we were able to get Liberty under his care.
To top the whole experience off, the trip home was a nightmare. Lib screamed on the way back to Atlanta, something new for him. He got up in my face and opened his mouth so wide to scream that I could see his tonsils. People on the plane turned and glared. My husband was able to calm him down as I was so worn out, I just broke down in tears, too. There was an older man sitting behind me who touched my shoulder and told me everything would be alright. Thank God for the kindness of strangers.
We made it throught that leg of the trip but when we got to Atlanta, the departure gates were entered wrong on the flight boards, so we trecked into the bowels of the airport and back twice. Next, they cancelled our flight altogether. We then stood in line for two hours praying we could find a flight as we ran out of diapers and food. Lib has been on a gluten free/casein free diet for almost three months, and I knew there would be no food we could just grab anywhere. It was like being in the Twilight Zone on a trip that would never end. Eventually, by the Grace of God we got home around 3 AM. Lib ran around the front yard in the rain yelling, "Yay, yay!"- about the only thing the little guy can say.
In the past few months of clicking around on the internet, I have learned so much from other mom's and their blogs...not only about treatments that have worked for them, or what's going on in the autism community, but especially in the realization that I am not alone in my feelings. That there are others who have experienced the same kinds of frustrations, sadness, insight, joy, rage, etc. Once, after I thanked one Mom for her help, she said sharing our common experience of raising special needs kids makes us kind of related. That feels right to me.
So, in sharing my personal journey with our son, my hope is that we can all be of help to each other in some way.
Namaste.
4 comments:
OMG! He is so cute!!!
Welcome to the Bloggiverse!
: )
Think about coming to a writing retreat/workshop in October, Kathryn. We have lots to talk about!
Welcome, welcome. Your son is beautiful, and he will recover.
Believe it.
xo
Dear Kathy,
This is a beautiful spot to learn more from you. I admire you and I know your efforts will not be for naught.
Love you,
Suz
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