Ryan was diagnosed in July, and since then I have been reading any article that I could get my hands on. Google is a wonderful place to find answers to questions and to scare the heck out of you. Having a diagnosis for Ryan has given me a better understanding of how I need to deal with him and his many issues. I have definitely become more patient and accepting.
Through much of my reading, I have found parents who are willing to go to the ends of the earth to find answers and even a cure for their children. I love Jenny McCarthy's book...I actually could not put it down. She was so honest, and although her child exhibited much different symptoms than Ryan, it was so assuring to know that autism is everywhere and affects so many families. I am not alone.
It seems as though there has been some success with diet changes and a lot of success with wrap around therapy. I also came to find about a specific group of doctors called DAN doctors, or Defeat Autism Now. Right away, I called a DAN doctor in Pittsburgh who is supposed to be one of the best. Upon calling his office, I was told that it would be a 9-12 month wait to see him. I scheduled the appointment but was extremely frustrated because that is another 9-12 months of wasted time for Ryan. I searched other states, and found the same thing. There are so many parents seeking help, that it is a waiting game. In the mean time, I did ask the DAN doctor's office what suggestions they might have in the mean time. They do a ton of blood work, so the receptionsist told me that if I wanted to ask my pediatrician for some of the same blood work, it may help give me some early answers.
I talked to our pediatrician, and she suggested seeing a Gastroenterologist regarding suspicions tha Ryan's diet could be causing some of his Autistic characteristics. I made an appointment with Children's Hospital and saw a Gastro doctor. He felt that Ryan's diet was not affecting him, but was willing to run a full scale of blood work to see if he could find anything. After two weeks, the Gastro office called me and the only thing the blood work showed was that Ryan was low in B12. He suggested I still keep the appointment with the DAN doctor, but to the best of his knowledge, if diet was causing elevated Autistic characteristics, than it would have showed up in the blood work.
I also got paired up with an agency via a good friend (Thanks Tanya!). Family Behavioral Resoureces, or FBR, supplies Ryan's support system. He was given a fabulous BSC, which is a "head therapist" that over see's Ryan's TSS, which is the therapist who see's him at school and home. He receives 10 hours of therapy at preschool and 5 hours of therapy at home. Unfortunantly, we have not had much luck with TSS's. We are on or third TSS and I am not sure that this one is right either. We are not a hard family to work with, and Ryan is high functioning so we have been told he is the kind of child that is a joy to work with, but still no luck finding the right TSS.
For now, we are waiting patiently to see the DAN doctor and holding out that our current TSS will work out, we have our fingers crossed. It's funny because I thought once Ryan had his diagnosis that things would fall right into place for him and help would be readily available, but I have found quite the opposite. Finding help, answers and support is like going through an over stuffed laundry basket looking for two matching socks, you will find it, but it takes forever and you have to look through every piece of clothing to see if you sock is hidden inside of it. And even after you have gone through the entire laundry basket, you may have to look back in the dryer to see if it is still in there.
I am exhausted. I work full time, which I have to do. When I get home for work it is a race to get through dinner, spend a few precious hours with both kids and get them to bed. Many times, there is a therapist at my house to greet me upon my arrival home from work and I have to share my evenings with them. My husband works third shift, so there is not much "us" time. Doing what is best for your child often puts a strain on your marraige like you could never imagine. It takes ten times the normal effort to hold your marraige together. It is important that the "glue that binds you" is strong in the beginning. Thank God for me that my husband really tries and cares so much about doing what is best for Ryan, and he hangs in there and tries to be the best Dad and husband he can be. It is a daily sacrifice and it usually is never easy.
I am not under the misconception that that I am going to be able to CURE Ryan. I think Ryan was born this way and there is no cause for his autistic characteristics since birth. I do know that many times he is in "a fog" and in "his own world" so I just want to help him in any way that I can. My goal is to work hard now so that when he goes to Kindergarten in a year and a half, he can go to public school and be main streamed. I want him to be, and feel, as "normal" as possible. I am also prepared that he may have to attend a special school and that may be the best thing for him. I will cross that bridge when it is time.
I will keep you updated as our journey continues.
Through much of my reading, I have found parents who are willing to go to the ends of the earth to find answers and even a cure for their children. I love Jenny McCarthy's book...I actually could not put it down. She was so honest, and although her child exhibited much different symptoms than Ryan, it was so assuring to know that autism is everywhere and affects so many families. I am not alone.
It seems as though there has been some success with diet changes and a lot of success with wrap around therapy. I also came to find about a specific group of doctors called DAN doctors, or Defeat Autism Now. Right away, I called a DAN doctor in Pittsburgh who is supposed to be one of the best. Upon calling his office, I was told that it would be a 9-12 month wait to see him. I scheduled the appointment but was extremely frustrated because that is another 9-12 months of wasted time for Ryan. I searched other states, and found the same thing. There are so many parents seeking help, that it is a waiting game. In the mean time, I did ask the DAN doctor's office what suggestions they might have in the mean time. They do a ton of blood work, so the receptionsist told me that if I wanted to ask my pediatrician for some of the same blood work, it may help give me some early answers.
I talked to our pediatrician, and she suggested seeing a Gastroenterologist regarding suspicions tha Ryan's diet could be causing some of his Autistic characteristics. I made an appointment with Children's Hospital and saw a Gastro doctor. He felt that Ryan's diet was not affecting him, but was willing to run a full scale of blood work to see if he could find anything. After two weeks, the Gastro office called me and the only thing the blood work showed was that Ryan was low in B12. He suggested I still keep the appointment with the DAN doctor, but to the best of his knowledge, if diet was causing elevated Autistic characteristics, than it would have showed up in the blood work.
I also got paired up with an agency via a good friend (Thanks Tanya!). Family Behavioral Resoureces, or FBR, supplies Ryan's support system. He was given a fabulous BSC, which is a "head therapist" that over see's Ryan's TSS, which is the therapist who see's him at school and home. He receives 10 hours of therapy at preschool and 5 hours of therapy at home. Unfortunantly, we have not had much luck with TSS's. We are on or third TSS and I am not sure that this one is right either. We are not a hard family to work with, and Ryan is high functioning so we have been told he is the kind of child that is a joy to work with, but still no luck finding the right TSS.
For now, we are waiting patiently to see the DAN doctor and holding out that our current TSS will work out, we have our fingers crossed. It's funny because I thought once Ryan had his diagnosis that things would fall right into place for him and help would be readily available, but I have found quite the opposite. Finding help, answers and support is like going through an over stuffed laundry basket looking for two matching socks, you will find it, but it takes forever and you have to look through every piece of clothing to see if you sock is hidden inside of it. And even after you have gone through the entire laundry basket, you may have to look back in the dryer to see if it is still in there.
I am exhausted. I work full time, which I have to do. When I get home for work it is a race to get through dinner, spend a few precious hours with both kids and get them to bed. Many times, there is a therapist at my house to greet me upon my arrival home from work and I have to share my evenings with them. My husband works third shift, so there is not much "us" time. Doing what is best for your child often puts a strain on your marraige like you could never imagine. It takes ten times the normal effort to hold your marraige together. It is important that the "glue that binds you" is strong in the beginning. Thank God for me that my husband really tries and cares so much about doing what is best for Ryan, and he hangs in there and tries to be the best Dad and husband he can be. It is a daily sacrifice and it usually is never easy.
I am not under the misconception that that I am going to be able to CURE Ryan. I think Ryan was born this way and there is no cause for his autistic characteristics since birth. I do know that many times he is in "a fog" and in "his own world" so I just want to help him in any way that I can. My goal is to work hard now so that when he goes to Kindergarten in a year and a half, he can go to public school and be main streamed. I want him to be, and feel, as "normal" as possible. I am also prepared that he may have to attend a special school and that may be the best thing for him. I will cross that bridge when it is time.
I will keep you updated as our journey continues.
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