In late 2010 as Scott was approaching his second birthday our attention was being drawn to certain details. I had noticed that his vocabulary was more limited than other children his age so I started a word count. I found myself trying to be creative with his word list just so I could add more words to the count. I was really proud of the fact that he knew his entire alphabet, as in recognition of each letter, not just memorization of the song. The list was moderate at best. As his second birthday got closer I started noticing that he stopped saying certain words that he used to be strong with. All of a sudden he wouldn't say the word "car" etc. I later found out that this verbal regression was a big red flag.
I felt like I understood Scott's comprehension. I knew when he was ready for a new concept. I often felt frustrated however when things weren't progressing the way they were "supposed" to. I had to keep discussion with him simple.
Scott would also ignore us whenever we called his name. He could be right in front of me and I could call his name 20 times and he wouldn't turn to look at me. Whenever I wanted Scott's attention I would have to clap loudly and shout his name, and it only sometimes worked. I knew his hearing was fine just based on natural reactions to normal sounds, he was just ignoring me. I noticed this behavior more times than I wanted to admit. I learned to work around it, I accommodated it by going to him to get his attention rather than encouraging him to acknowledge me.
Lastly, and I have to say that this was Matt's observation. For a long time Matt would often complain that whenever he was holding Scott that Scott wouldn't make eye contact with him. He would always look around him. I never had a problem with eye contact with Scott, but it was a regular observation with Matt.
Backing up a little bit in time, at Scott's 18-month pediatrician appointment I filled out the questionnaire that is meant to screen for Autism. I feel like I may have rationalized an answer or two. I knew that the questionnaire was meant to screen for Autism and so I made sure to answer the way I wanted, to ensure no one could even suggest that Scott had Autism. But by the time he turned two, I did feel like we had enough concerns that I needed to discuss with the pediatrician. Deep down I knew it was a possibility.
Sure enough, as I presented each of my concerns with the pediatrician, Dr. Lillian Wu, she came back with the recommendation that Scott ought to be evaluated for Autism. Her biggest concern was the language regression. As I started crying in the examination room she reached out and tried to reassure me that she was aggressive in Autism screening, perhaps to say that maybe she was wrong, but I think she knew that she was right.
She provided me with information for a group for his evaluation as well as information for the Regional Center of Orange County, which I had never heard of. I made appointments with both of these groups, not really knowing why. I also asked if we could have Scott's hearing tested as a "just to be sure" measure. When you tell someone that your son isn't responding to his own name their first question is "is his hearing okay?" For the record, his hearing checked out just fine!
The first appointment we made was with the Regional Center. We had a social worker come to our home to do an intake evaluation of Scott. Without a diagnosis she had to determine if his delays were severe enough to qualify for services. Prior to our appointment we were sent a packet of papers to fill out. I had to fill in information regarding his development. When did he first roll over, sit up, say his first word?, etc. She observed him in the home as well as asking us a number of questions about his behaviors. Does he do this? Can he do that? How often does this happen? My mind started to warp a bit. Luckily for us he did in fact qualify. The next step then was to have him evaluated further to see how deficient he was in all areas, to get more quantitative information. I then made another appointment at a therapy center. For each of these appointments I had a hard time understanding what role each of them played. I just did what I was told. If they said to make an appointment here or there I did it.
We went to our next evaluation appointment. We met with a group of therapists: speech, occupational, and physical. They all observed him and gave him specific tasks to test his skills. As a parent it was so difficult to sit and watch him being asked to perform. I felt a tremendous amount of pressure. What if he was tired? What if he didn't want to stack blocks today? What if he didn't want to cooperate? Could they get a true understanding of his abilities? We also were asked a hundred questions similar to the original intake interview. I also started second guessing my answers. I worried that if I answered incorrectly it could dramatically influence their results. I tried to be honest with myself. Matt was with me, and I would have to look to him to back me up on some of my answers. Occasionally we would even disagree about our observations.
In the end we received their conclusions. He had significant delays in a number of areas, and some lesser delays in other areas. So now I had this information...and I wasn't sure what to do with it. I cried some more I am sure.
The Regional Center provides services for children with developmental disabilities. They make arrangements for therapy sessions and in our case paid for that therapy. They decide if the therapy is to be group or private, in home or at a facility, etc. We started off at one location, a rehabilitation institute, that saw children with a variety of disabilities. We knew that Scott was going to need speech therapy and occupational therapy. I can get more into therapy details later, but I want to keep on topic of Scott's diagnosis.
Finally we made it to our appointment with Dr. Lerner at For OC Kids:Neurodevelopmental Center. Matt had to work that day so I ended up having to take Scott by myself to the appointment due to the amount of time it took to get in. By this time we were at our 3rd evaluation of Scott from when the whole process started. This time since we were seeing a medical doctor the nurse took Scott's measurements to start. We were then put in room to wait. There were a lot of toys and so Scott was able to keep busy. I don't remember for sure but it felt like we were waiting in that room for a very long time. Finally the doctor came in and the questions began. I felt like I had answered all of these questions before at the other interviews/evaluations. By now I felt like I had figured out the answers but since this was the evaluation that mattered the most I struggled more than ever to give the right answers.
Dr. Lerner spoke to me for a while all the while observing Scott's play. At one point he had another person come into the room to interact with Scott so he could observe him that way. After about 45 minutes he explained to me that Scott had mild-moderate ASD. He gave me specific examples of things he had observed. Some things I agreed with and understood, others to this day I don't feel were legitimate indicators. I was mad. I was upset. I wished that Dr. Lerner could come observe Scott in our home for a week rather than making his determination based on 45 minutes. My emotions couldn't be contained, it didn't help that I was pregnant with Alice at the time. I cried and I felt dizzy. I needed time to process what was happening. I had been thrown into a new world full of therapy and acronyms and appointments and my brain was trying to sort it all out. Then, to add onto the cluster of puzzle pieces in my brain, I didn't really believe the diagnosis, and yet I think I knew it was true. It was a difficult thing.
I called Matt on my way out of the office to tell him what Dr. Lerner had said. I should point out that Dr. Lerner is very distinguished and I have since talked to other parents who have seen Dr. Lerner as well who absolutely love him. In hindsight I do appreciate him and his expertise.
This isn't a happy ending to my story. This is just how it began. We had a long road ahead of us. We spent a lot of time going to appointments and therapy. We had meetings with our Regional Center social worker. I had decisions to make about how to proceed with details that I didn't understand. And I still had to come to grips with Scott's diagnosis. I cried a lot. I kept it a secret. I felt sad when I watched other children his age who didn't seem to have any significant delays. I got mad when people told me not to compare him to other children. Not because I was insulted but because I know you aren't supposed to compare...and yet we do compare. I think comparing is somewhat important. If I didn't compare Scott's language skills to the "norm" his diagnosis may have been delayed significantly. So I say, compare, but only to the point that will help you help your child.
Scott has made tremendous progress in all areas since his diagnosis. He currently goes to special education preschool with the Applied Behavior Analysis (ABA) method of teaching. His language skills have improved vastly and his eye contact is spot on, except for in the moments when he "checks out." He is an extremely social child who is as tender and sweet as they come. We have many things to look forward to with Scott.
I felt like I understood Scott's comprehension. I knew when he was ready for a new concept. I often felt frustrated however when things weren't progressing the way they were "supposed" to. I had to keep discussion with him simple.
Scott would also ignore us whenever we called his name. He could be right in front of me and I could call his name 20 times and he wouldn't turn to look at me. Whenever I wanted Scott's attention I would have to clap loudly and shout his name, and it only sometimes worked. I knew his hearing was fine just based on natural reactions to normal sounds, he was just ignoring me. I noticed this behavior more times than I wanted to admit. I learned to work around it, I accommodated it by going to him to get his attention rather than encouraging him to acknowledge me.
Lastly, and I have to say that this was Matt's observation. For a long time Matt would often complain that whenever he was holding Scott that Scott wouldn't make eye contact with him. He would always look around him. I never had a problem with eye contact with Scott, but it was a regular observation with Matt.
Backing up a little bit in time, at Scott's 18-month pediatrician appointment I filled out the questionnaire that is meant to screen for Autism. I feel like I may have rationalized an answer or two. I knew that the questionnaire was meant to screen for Autism and so I made sure to answer the way I wanted, to ensure no one could even suggest that Scott had Autism. But by the time he turned two, I did feel like we had enough concerns that I needed to discuss with the pediatrician. Deep down I knew it was a possibility.
Sure enough, as I presented each of my concerns with the pediatrician, Dr. Lillian Wu, she came back with the recommendation that Scott ought to be evaluated for Autism. Her biggest concern was the language regression. As I started crying in the examination room she reached out and tried to reassure me that she was aggressive in Autism screening, perhaps to say that maybe she was wrong, but I think she knew that she was right.
She provided me with information for a group for his evaluation as well as information for the Regional Center of Orange County, which I had never heard of. I made appointments with both of these groups, not really knowing why. I also asked if we could have Scott's hearing tested as a "just to be sure" measure. When you tell someone that your son isn't responding to his own name their first question is "is his hearing okay?" For the record, his hearing checked out just fine!
The first appointment we made was with the Regional Center. We had a social worker come to our home to do an intake evaluation of Scott. Without a diagnosis she had to determine if his delays were severe enough to qualify for services. Prior to our appointment we were sent a packet of papers to fill out. I had to fill in information regarding his development. When did he first roll over, sit up, say his first word?, etc. She observed him in the home as well as asking us a number of questions about his behaviors. Does he do this? Can he do that? How often does this happen? My mind started to warp a bit. Luckily for us he did in fact qualify. The next step then was to have him evaluated further to see how deficient he was in all areas, to get more quantitative information. I then made another appointment at a therapy center. For each of these appointments I had a hard time understanding what role each of them played. I just did what I was told. If they said to make an appointment here or there I did it.
We went to our next evaluation appointment. We met with a group of therapists: speech, occupational, and physical. They all observed him and gave him specific tasks to test his skills. As a parent it was so difficult to sit and watch him being asked to perform. I felt a tremendous amount of pressure. What if he was tired? What if he didn't want to stack blocks today? What if he didn't want to cooperate? Could they get a true understanding of his abilities? We also were asked a hundred questions similar to the original intake interview. I also started second guessing my answers. I worried that if I answered incorrectly it could dramatically influence their results. I tried to be honest with myself. Matt was with me, and I would have to look to him to back me up on some of my answers. Occasionally we would even disagree about our observations.
In the end we received their conclusions. He had significant delays in a number of areas, and some lesser delays in other areas. So now I had this information...and I wasn't sure what to do with it. I cried some more I am sure.
The Regional Center provides services for children with developmental disabilities. They make arrangements for therapy sessions and in our case paid for that therapy. They decide if the therapy is to be group or private, in home or at a facility, etc. We started off at one location, a rehabilitation institute, that saw children with a variety of disabilities. We knew that Scott was going to need speech therapy and occupational therapy. I can get more into therapy details later, but I want to keep on topic of Scott's diagnosis.
Finally we made it to our appointment with Dr. Lerner at For OC Kids:Neurodevelopmental Center. Matt had to work that day so I ended up having to take Scott by myself to the appointment due to the amount of time it took to get in. By this time we were at our 3rd evaluation of Scott from when the whole process started. This time since we were seeing a medical doctor the nurse took Scott's measurements to start. We were then put in room to wait. There were a lot of toys and so Scott was able to keep busy. I don't remember for sure but it felt like we were waiting in that room for a very long time. Finally the doctor came in and the questions began. I felt like I had answered all of these questions before at the other interviews/evaluations. By now I felt like I had figured out the answers but since this was the evaluation that mattered the most I struggled more than ever to give the right answers.
Dr. Lerner spoke to me for a while all the while observing Scott's play. At one point he had another person come into the room to interact with Scott so he could observe him that way. After about 45 minutes he explained to me that Scott had mild-moderate ASD. He gave me specific examples of things he had observed. Some things I agreed with and understood, others to this day I don't feel were legitimate indicators. I was mad. I was upset. I wished that Dr. Lerner could come observe Scott in our home for a week rather than making his determination based on 45 minutes. My emotions couldn't be contained, it didn't help that I was pregnant with Alice at the time. I cried and I felt dizzy. I needed time to process what was happening. I had been thrown into a new world full of therapy and acronyms and appointments and my brain was trying to sort it all out. Then, to add onto the cluster of puzzle pieces in my brain, I didn't really believe the diagnosis, and yet I think I knew it was true. It was a difficult thing.
I called Matt on my way out of the office to tell him what Dr. Lerner had said. I should point out that Dr. Lerner is very distinguished and I have since talked to other parents who have seen Dr. Lerner as well who absolutely love him. In hindsight I do appreciate him and his expertise.
This isn't a happy ending to my story. This is just how it began. We had a long road ahead of us. We spent a lot of time going to appointments and therapy. We had meetings with our Regional Center social worker. I had decisions to make about how to proceed with details that I didn't understand. And I still had to come to grips with Scott's diagnosis. I cried a lot. I kept it a secret. I felt sad when I watched other children his age who didn't seem to have any significant delays. I got mad when people told me not to compare him to other children. Not because I was insulted but because I know you aren't supposed to compare...and yet we do compare. I think comparing is somewhat important. If I didn't compare Scott's language skills to the "norm" his diagnosis may have been delayed significantly. So I say, compare, but only to the point that will help you help your child.
Scott has made tremendous progress in all areas since his diagnosis. He currently goes to special education preschool with the Applied Behavior Analysis (ABA) method of teaching. His language skills have improved vastly and his eye contact is spot on, except for in the moments when he "checks out." He is an extremely social child who is as tender and sweet as they come. We have many things to look forward to with Scott.
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