When my son was first evaluated for developmental delay at 20 months of age, I had no idea what to expect. All I knew is that he was developing normally, then after his one year old shots (the MMR), there were comments from the pediatricians (I went through a few) that there were things he should be doing by now: Pointing, saying X-many words, looking at people, etc. The pediatrician we were going to at the time said that if we wanted to get an evaluation to rule out any problems, she would write a referral. She said it was a simple, easy thing to do and that the evaluation would take place in our home. I said, "Okay, why wait? Let's do it."
At this point, I really did not think there was anything wrong. I did not have another child to compare mine to. All of the other kids in the family were grown; I did not have friends my age with small children. I knew my child loved television, his pacifiers, and lights and spinning toys. The fact that he went from eating every kind of food I put in front of him to eating nothing but graham crackers was dismissed by one pediatrician as a "toddler phase" he would outgrow. Four years ago, we were just beginning to see the now familiar posters about warning signs of autism. We did not have the staggering statistics told to us back then. Now, you see the posters everywhere.
At any rate, unfortunately, the evaluation did not take place in my home. Instead, we had to go to a state-run developmental education center run by the hospital where my son was paraded in front of a panel of professionals: A psychologist, neurologist, occupational therapist, speech therapist, physical therapist, and the developmental disability coordinator. They were concerned that he did not stack blocks. We said he didn't like to do that. They asked me if he lined things up. He really didn't. They asked me if I was concerned he would put something bad in his mouth. I said yes, he was only 20 months old. They were concerned that he would not pick up a crayon or look at them when they called his name. I proudly demonstrated how I could get his full, undivided attention when I sang a Wiggles song to him.
It went on for an hour. Then, it became quiet in the room when the psychologist, who was looking down at the floor, not me, slowly uttered the dreaded sentence, "There is a condition called autistic spectrum disorder...." After that I don't know what he said. Except when I asked, through tear-filled eyes, if Liberty would eventually be okay, I heard him say, "We can always hope and pray." I felt like I had been socked in the gut. Then, someone shoved Social Security Disability papers in my face. I don't know how I even got home. I was completely devastated. My husband said, "Don't worry, these people don't know him, they don't know what they are talking about."
At home, I would look at Liberty and cry. My son disabled? I would never have used that word to describe my beautiful, happy, wonderful boy. I searched my memory for what it was I did wrong. I had an incredibly healthy pregnancy, only gained 25 lbs. In the hospital, all the doctors commented on what a healthy, beautiful baby I had. What went wrong? Was it polluted water around here? I started to convince myself of different things that might have caused the condition as my mind ran the list of possibilities. I pretty much drove my self crazy. It was years before I connected the dots to his one year vaccinations. I read about the connection, but because Liberty did not have those horrible immediate and sometimes violent reactions, I dismissed the idea. Until I realized by looking at his first year baby book that the pediatrician wrote in, that he had a double ear infection afterwards - the first one the pediatrician could not get to clear up so he gave my son a mega dose of antibiotic. Omnicef, I think it was.
Back then, it took me a long time to be able to make it through a day without crying. There were days I spent on the Internet scouring for information. We'd go to the park to play just so I could get some air and pretend all was normal. Then I began to look forward to the troupe of therapists that were sent to my house. Until Liberty was three years old, we received free therapy. Seeing the therapists was comforting to me. I could pick their brains about what they knew. They were compassionate and they gave me "homework" to do with Lib. I started to learn to become his therapist as well as his mother.
Here's the thing parents of newly diagnosed children are desperate to know - just like I was: What will this look like when my child is older? What does it mean for his future? And there is NO answer for that. This is the most frustrating thing in the world. No one can tell you what caused it, and no one can tell you if, when or how your child will progress.
I had a re-experiencing of the whole evaluation episode with my son this summer, when I met a mom in a waiting room where we were both taking our kids for occupational and speech therapy. She had overheard a conversation I was having with the intake coordinator from that evaluation long ago who I had happened to run into in the therapy office. This mom could have been me four years ago. She began to tell me what her son was doing or rather NOT doing. She said her husband is in denial but she knows there is something wrong. She said she thinks that her husband might be finally coming around but he just can't accept it. You could see the stress all over her face. I had seen her son earlier and knew he had a diagnosis of autism because my son did the same things at his age: Made the same noises, did the same hand flapping, was not looking, etc. In fact, it was striking to me because her son was the same age Lib was at his diagnosis. My son just turned 5 this summer. I could see how much progress Liberty has made since then.
My heart just broke for this woman. We discussed different things we had done for Liberty including therapeutic listening and diet changes. There was a lot more I wanted to say to her but she left before I could talk to her.
I wanted to say, "Listen, the evaluation will be hard when it's your precious child under the microscope. The evaluators are going to talk in clinical talk. It will feel very cold to you. Try to brace yourself for that and keep your chin up. You are going to go through the grieving process. You will be in denial. You will be angry at everyone including God. You will even bargain,and eventually get to some version of acceptance one day, but not anytime soon. Let yourself go through your emotions, but don't give up HOPE. Talk only to supportive people. Your circle of friends might change. It is important to keep your thoughts on the positive and not the negative. This will take work and you will need help! But your son's progress will be affected by what you think of him, your vision of his future, by what you think he is capable of. BE HIS ADVOCATE. If you don't think a teacher or therapist is really on your team, get another one! Be proactive and NEVER GIVE UP.
The most important thing I wanted to say to her was, "Don't LIVE under the diagnosis. USE it to help get your son the treatments that he needs, to get insurance coverage, but do not allow it to be a limiting factor in his life.
So many people wear a diagnosis like a wound. When you do that, you keep opening it over and over again and a wound will never heal like that. I think a diagnosis should be like a reference point, somewhere to start, but to constantly live in the shadow of it is to live your life under a curse instead of a blessing.
What does this mean, that I shouldn't call my son autistic? Of course, I will use that word in certain settings when necessary, like with school officials and insurance companies. But, the more I learn about autistic spectrum disorders, the more I see my son as chronically ill. I am not quick to dismiss every quirky thing he does as autistic anymore and I certainly don't go around apologizing for him in front of others saying, "He's autistic, you know, sorry...." I went through that phase for awhile, too. I choose my words carefully, and not just in regard to him. Your words eventually create how you experience your life. I think you really start to understand this when you live within a highly stressful situation.
Liberty is who he is and he is still in the process of becoming..as we all are. And I love my child fiercely. Love is probably the best guidance of all.
I have said this before: I am sticking with the folks who are learning what works and then spreading the word, and that is mainly the Generation Rescue people, the DAN! doctors. It is sickening to read that the CDC receives 8 billion dollars for research but they can't get a study together to research vaccine injury; meanwhile Generation Rescue spent $200,000 for a small preliminary study that overwhelmingly points to vaccinations as a culprit. (If you missed this article on Rescue Post, here is the link to the survey done by Generation Rescue http://www.generationrescue.org/survey.html).
I went to a DAN! doctor presentation this past Spring. She said that in 10 years, autism will be known primarily as a disease of inflammation. I hope within 10 years, the DAN! protocol will become mainstream. I can always dream.
For now, I just tell other parents to try everything they can and to always trust your gut. And, once you have gained some footing in this journey with your children, extend your hand and try and help the next parent of a newly diagnosed child to get a leg up, too.
At this point, I really did not think there was anything wrong. I did not have another child to compare mine to. All of the other kids in the family were grown; I did not have friends my age with small children. I knew my child loved television, his pacifiers, and lights and spinning toys. The fact that he went from eating every kind of food I put in front of him to eating nothing but graham crackers was dismissed by one pediatrician as a "toddler phase" he would outgrow. Four years ago, we were just beginning to see the now familiar posters about warning signs of autism. We did not have the staggering statistics told to us back then. Now, you see the posters everywhere.
At any rate, unfortunately, the evaluation did not take place in my home. Instead, we had to go to a state-run developmental education center run by the hospital where my son was paraded in front of a panel of professionals: A psychologist, neurologist, occupational therapist, speech therapist, physical therapist, and the developmental disability coordinator. They were concerned that he did not stack blocks. We said he didn't like to do that. They asked me if he lined things up. He really didn't. They asked me if I was concerned he would put something bad in his mouth. I said yes, he was only 20 months old. They were concerned that he would not pick up a crayon or look at them when they called his name. I proudly demonstrated how I could get his full, undivided attention when I sang a Wiggles song to him.
It went on for an hour. Then, it became quiet in the room when the psychologist, who was looking down at the floor, not me, slowly uttered the dreaded sentence, "There is a condition called autistic spectrum disorder...." After that I don't know what he said. Except when I asked, through tear-filled eyes, if Liberty would eventually be okay, I heard him say, "We can always hope and pray." I felt like I had been socked in the gut. Then, someone shoved Social Security Disability papers in my face. I don't know how I even got home. I was completely devastated. My husband said, "Don't worry, these people don't know him, they don't know what they are talking about."
At home, I would look at Liberty and cry. My son disabled? I would never have used that word to describe my beautiful, happy, wonderful boy. I searched my memory for what it was I did wrong. I had an incredibly healthy pregnancy, only gained 25 lbs. In the hospital, all the doctors commented on what a healthy, beautiful baby I had. What went wrong? Was it polluted water around here? I started to convince myself of different things that might have caused the condition as my mind ran the list of possibilities. I pretty much drove my self crazy. It was years before I connected the dots to his one year vaccinations. I read about the connection, but because Liberty did not have those horrible immediate and sometimes violent reactions, I dismissed the idea. Until I realized by looking at his first year baby book that the pediatrician wrote in, that he had a double ear infection afterwards - the first one the pediatrician could not get to clear up so he gave my son a mega dose of antibiotic. Omnicef, I think it was.
Back then, it took me a long time to be able to make it through a day without crying. There were days I spent on the Internet scouring for information. We'd go to the park to play just so I could get some air and pretend all was normal. Then I began to look forward to the troupe of therapists that were sent to my house. Until Liberty was three years old, we received free therapy. Seeing the therapists was comforting to me. I could pick their brains about what they knew. They were compassionate and they gave me "homework" to do with Lib. I started to learn to become his therapist as well as his mother.
Here's the thing parents of newly diagnosed children are desperate to know - just like I was: What will this look like when my child is older? What does it mean for his future? And there is NO answer for that. This is the most frustrating thing in the world. No one can tell you what caused it, and no one can tell you if, when or how your child will progress.
I had a re-experiencing of the whole evaluation episode with my son this summer, when I met a mom in a waiting room where we were both taking our kids for occupational and speech therapy. She had overheard a conversation I was having with the intake coordinator from that evaluation long ago who I had happened to run into in the therapy office. This mom could have been me four years ago. She began to tell me what her son was doing or rather NOT doing. She said her husband is in denial but she knows there is something wrong. She said she thinks that her husband might be finally coming around but he just can't accept it. You could see the stress all over her face. I had seen her son earlier and knew he had a diagnosis of autism because my son did the same things at his age: Made the same noises, did the same hand flapping, was not looking, etc. In fact, it was striking to me because her son was the same age Lib was at his diagnosis. My son just turned 5 this summer. I could see how much progress Liberty has made since then.
My heart just broke for this woman. We discussed different things we had done for Liberty including therapeutic listening and diet changes. There was a lot more I wanted to say to her but she left before I could talk to her.
I wanted to say, "Listen, the evaluation will be hard when it's your precious child under the microscope. The evaluators are going to talk in clinical talk. It will feel very cold to you. Try to brace yourself for that and keep your chin up. You are going to go through the grieving process. You will be in denial. You will be angry at everyone including God. You will even bargain,and eventually get to some version of acceptance one day, but not anytime soon. Let yourself go through your emotions, but don't give up HOPE. Talk only to supportive people. Your circle of friends might change. It is important to keep your thoughts on the positive and not the negative. This will take work and you will need help! But your son's progress will be affected by what you think of him, your vision of his future, by what you think he is capable of. BE HIS ADVOCATE. If you don't think a teacher or therapist is really on your team, get another one! Be proactive and NEVER GIVE UP.
The most important thing I wanted to say to her was, "Don't LIVE under the diagnosis. USE it to help get your son the treatments that he needs, to get insurance coverage, but do not allow it to be a limiting factor in his life.
So many people wear a diagnosis like a wound. When you do that, you keep opening it over and over again and a wound will never heal like that. I think a diagnosis should be like a reference point, somewhere to start, but to constantly live in the shadow of it is to live your life under a curse instead of a blessing.
What does this mean, that I shouldn't call my son autistic? Of course, I will use that word in certain settings when necessary, like with school officials and insurance companies. But, the more I learn about autistic spectrum disorders, the more I see my son as chronically ill. I am not quick to dismiss every quirky thing he does as autistic anymore and I certainly don't go around apologizing for him in front of others saying, "He's autistic, you know, sorry...." I went through that phase for awhile, too. I choose my words carefully, and not just in regard to him. Your words eventually create how you experience your life. I think you really start to understand this when you live within a highly stressful situation.
Liberty is who he is and he is still in the process of becoming..as we all are. And I love my child fiercely. Love is probably the best guidance of all.
I have said this before: I am sticking with the folks who are learning what works and then spreading the word, and that is mainly the Generation Rescue people, the DAN! doctors. It is sickening to read that the CDC receives 8 billion dollars for research but they can't get a study together to research vaccine injury; meanwhile Generation Rescue spent $200,000 for a small preliminary study that overwhelmingly points to vaccinations as a culprit. (If you missed this article on Rescue Post, here is the link to the survey done by Generation Rescue http://www.generationrescue.org/survey.html).
I went to a DAN! doctor presentation this past Spring. She said that in 10 years, autism will be known primarily as a disease of inflammation. I hope within 10 years, the DAN! protocol will become mainstream. I can always dream.
For now, I just tell other parents to try everything they can and to always trust your gut. And, once you have gained some footing in this journey with your children, extend your hand and try and help the next parent of a newly diagnosed child to get a leg up, too.
1 comment:
Beautiful post. I wish I had read that when I was crying in the dark, too.
You've just done a great service for another mother.
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