Wow! Tomorrow, April 2nd is World Autism Day, again! We have been on our train ride for 4 years now with my youngest son who turns 6 in July and a little over 2 years with my step son who is 14. We have actually been on the journey longer than that with both, but just didn't know it. We knew that something was not right, but getting a diagnosis was another story.
With my youngest son, we knew before he was a year old. I will never forget my wife taking him to the doctor one day after he had turned one. I will never forget her telling me that the pediatrician thought it was something neurological. I felt like I had just been run over by a semi truck and was absolutely speechless. Our son had met every one of his milestones up until 9 or 10 months of age. After a few minutes of me just sitting there silently, my wife asked me if I was okay and all I could do was shake my head to indicate "no". I then excused myself and went to the bedroom where I cried for what seemed like an eternity. I got up, dusted myself off and prepared to find out what was going on with my son and to get answers. In March 2011, after jumping through many hoops and hurdles and getting no cooperation from a so called specialist in neurology, I told our kids' pediatrician to get us to a different one, even if it was out of town. The pediatrician initially thought that my son had cerebral palsy. After making a 200 mile trip and meeting with a different neurologist, we got our answer. Our son was on the autism spectrum and so began our official journey with autism on March 29.2011. When it came to my step son, who was diagnosed in 2012, it was actually almost a relief to get a diagnosis that fit, so we could start getting him the help that he needs.
On world autism day, we will be thankful for our children, just like we are every other day. We will celebrate how special both boys are to us, but the autism? Nope, I don't see anything positive about the disorder. I don't find anything that it has gifted our boys with, cute or quirky. I find it to be a huge road block and something that must be dealt with. Both of our boys have made huge strides with the appropriate therapies. Our youngest son can speak, which he didn't do until he was older than 3 years old. He still has hurdles to over come with his speech and sensory processing, but has moved forward and not given up. Our oldest can communicate his thoughts much better and seems more connected. He too has many hurdles to over come. The thing is, where would they be without the autism? Sure, there are no guarantees in life to begin with and raising kids is difficult enough in and of itself. Add in the chaos created by autism for many kids and then trying to figure out what works best for them, which therapists are the best for them (between OT, PT and speech, (we fired 6 of them before finding the right ones) it is extremely stressful for both the person living with the autism as well as parents and siblings. In my opinion, autism is one of the craziest disorders that I have ever dealt with or learned about. Certain things change daily or in my youngest son's case, hour by hour. When you see a child extremely miserable in their own skin, not being able to wear clothes, not being able to communicate even their basic needs to you, head banging and other aggressive behaviors, it is a tough pill to swallow. I am thankful that our boys have made the progress that they have made and I am thankful that my wife and I have grown as special needs parents. I am thankful for all of those who God has put in our lives along the way, who have helped our boys get to where they are today and I am thankful to God that things have not been worse than they have been for us. No, it has not always been pleasant and there have been scary times, but I read about many families who are dealing with so much more than us, so I am very thankful that our situation is not worse. As far as autism itself, I am not thankful for at all. Some days it is so difficult to watch that I have to disconnect myself or go back in the bedroom, so no one sees, and let it out..
As far as awareness goes, I think that it is great to make others aware, but so much more needs to be done. We have parents who are killing their own kids, we have families being split apart through divorce, we have CDC officials hiding a a key group in a study of the MMR vaccine that could show a possible link to autism and we have a government that is not moving quickly enough. The current rate scares me to death. When is it going to stop 1 in 20, 1 in 10, 1 in 5??? Then what is being done on a massive scale to help the parents or help the children once they grow into adulthood? I think that there are several possible environmental factors, but no real studies being done when it comes to that. They are more than happy to do studies that are truly lame and blame it on genetics.
In closing, I think it is great to tell the world about autism, but more needs to be done to find a cause, a possible cure and to help those families living it every single day of their lives!! What are your thoughts on world autism day? What areas do you feel need to be changed when it comes to autism?
With my youngest son, we knew before he was a year old. I will never forget my wife taking him to the doctor one day after he had turned one. I will never forget her telling me that the pediatrician thought it was something neurological. I felt like I had just been run over by a semi truck and was absolutely speechless. Our son had met every one of his milestones up until 9 or 10 months of age. After a few minutes of me just sitting there silently, my wife asked me if I was okay and all I could do was shake my head to indicate "no". I then excused myself and went to the bedroom where I cried for what seemed like an eternity. I got up, dusted myself off and prepared to find out what was going on with my son and to get answers. In March 2011, after jumping through many hoops and hurdles and getting no cooperation from a so called specialist in neurology, I told our kids' pediatrician to get us to a different one, even if it was out of town. The pediatrician initially thought that my son had cerebral palsy. After making a 200 mile trip and meeting with a different neurologist, we got our answer. Our son was on the autism spectrum and so began our official journey with autism on March 29.2011. When it came to my step son, who was diagnosed in 2012, it was actually almost a relief to get a diagnosis that fit, so we could start getting him the help that he needs.
On world autism day, we will be thankful for our children, just like we are every other day. We will celebrate how special both boys are to us, but the autism? Nope, I don't see anything positive about the disorder. I don't find anything that it has gifted our boys with, cute or quirky. I find it to be a huge road block and something that must be dealt with. Both of our boys have made huge strides with the appropriate therapies. Our youngest son can speak, which he didn't do until he was older than 3 years old. He still has hurdles to over come with his speech and sensory processing, but has moved forward and not given up. Our oldest can communicate his thoughts much better and seems more connected. He too has many hurdles to over come. The thing is, where would they be without the autism? Sure, there are no guarantees in life to begin with and raising kids is difficult enough in and of itself. Add in the chaos created by autism for many kids and then trying to figure out what works best for them, which therapists are the best for them (between OT, PT and speech, (we fired 6 of them before finding the right ones) it is extremely stressful for both the person living with the autism as well as parents and siblings. In my opinion, autism is one of the craziest disorders that I have ever dealt with or learned about. Certain things change daily or in my youngest son's case, hour by hour. When you see a child extremely miserable in their own skin, not being able to wear clothes, not being able to communicate even their basic needs to you, head banging and other aggressive behaviors, it is a tough pill to swallow. I am thankful that our boys have made the progress that they have made and I am thankful that my wife and I have grown as special needs parents. I am thankful for all of those who God has put in our lives along the way, who have helped our boys get to where they are today and I am thankful to God that things have not been worse than they have been for us. No, it has not always been pleasant and there have been scary times, but I read about many families who are dealing with so much more than us, so I am very thankful that our situation is not worse. As far as autism itself, I am not thankful for at all. Some days it is so difficult to watch that I have to disconnect myself or go back in the bedroom, so no one sees, and let it out..
As far as awareness goes, I think that it is great to make others aware, but so much more needs to be done. We have parents who are killing their own kids, we have families being split apart through divorce, we have CDC officials hiding a a key group in a study of the MMR vaccine that could show a possible link to autism and we have a government that is not moving quickly enough. The current rate scares me to death. When is it going to stop 1 in 20, 1 in 10, 1 in 5??? Then what is being done on a massive scale to help the parents or help the children once they grow into adulthood? I think that there are several possible environmental factors, but no real studies being done when it comes to that. They are more than happy to do studies that are truly lame and blame it on genetics.
In closing, I think it is great to tell the world about autism, but more needs to be done to find a cause, a possible cure and to help those families living it every single day of their lives!! What are your thoughts on world autism day? What areas do you feel need to be changed when it comes to autism?
RSS Feed
