There is a new story out this week on a new study that has found that pediatricians are dismissing the parents of their patients concerns about their children's growth. See Story Here. As I will cover in a future blog, these parents should go with their guts and push their doctors. Early intervention works wonders as we can attest to with Charlie. I will say though, we were lucky. We didn't have to push our doctor. She was astute enough to catch it on her own.
Reading the story got me thinking back to August 31, 2012. Charlie was supposed to have his normal 18 month appointment on August 31, 2012. We were a couple of months behind on that since Charlie was actually 20 months but that wasn't a big deal. For all we knew, it was just going to be a routine appointment and we would only get news that all was well. Of course, it didn't happen that way.
Reading the story got me thinking back to August 31, 2012. Charlie was supposed to have his normal 18 month appointment on August 31, 2012. We were a couple of months behind on that since Charlie was actually 20 months but that wasn't a big deal. For all we knew, it was just going to be a routine appointment and we would only get news that all was well. Of course, it didn't happen that way.
I remember it like it was yesterday. I was sitting at my desk working on a brief when my phone rang. I saw it was Caroline and picked up the phone expecting her report that Charlie was developing normally and I was excited to hear where his height and weight compared to other children his age. Of course, it didn't happen that way.
I picked up the phone and could instantly tell something was wrong. Caroline was crying and her voice was stuttered. I quickly asked what was the matter hoping Caroline was just overreacting about something. Of course, it didn't happen that way.
The news. Caroline told me that Dr. Lowe, our pediatrician, thought that Charlie was autistic. Turns out that Charlie massively failed the MCHAT that should be routinely taken by parents at their children's 18 month appointment. This news shocked me. I didn't know how to respond to Caroline. My instant response was "How does she know at this age? How could she know at this young age? She must be wrong." I must admit that I was even mad at the doctor for telling me something was wrong with my child.
However, truth be told, I think I had known for a couple of months that something was not quite right. Caroline and I never talked about it at the time to each other but we both had our private concerns. Charlie had cousins and friends close in age to him. It was pretty clear that Charlie was not developing as quickly as those peers. But whenever that topic came up, the response was always the typical "Every kid just develops at their own pace." The questions still lingered for me. I remember laying on the couch privately one evening and looking at what the signs of autism might be. O was worried by what I found. What I was saw was that things Charlie was doing and wasn't doing were things that were red flags for autism. Charlie didn't have much language.Charlie didn't play with toys appropriately. Charlie didn't point for things he wanted. Charlie didn't bring toys to us that he wanted to play with. But, there were things that Charlie did do that signaled it wasn't autism. Charlie made eye contact with us. Charlie was a smiley child. Charlie was a social child. Given these things that he was doing right and my fear of autism at the time, I concluded it must not be autism. Since I had reached that conclusion, I was too scared to even bring my concerns up with Caroline.
Back to August 31, 2012, I was stunned when I hung up the phone. I didn't know what to do. I have always had a very close relationship with my parents and my brother. I decided I would call my brother first and share the news with him. Eric's daughter is 6 months older than Charlie so I figured he would understand. I got a very supportive response from Eric but I still wasn't right. I then decided to call my parents, including my Mom who tends to be an over-worrier (sorry Mom), and let them know. They too were very supportive though I think we were all in shock. I remember my Mom's words were "if he is autistic, he is autistic. We will just work with it and love him anyways." The right words for a Mom to use, but, of course, I was still in shock. Next I talked to a co-worker who's sister in law had experience teaching AU classes. He was also supportive and assured me all would be ok. But, again, I still was in shock. At that point, I didn't really even knew what autism was. Sadly enough, and I will admit this, at that point in my life the only thing I knew about autism was from the movie Rain Man. Boy, was there so much more to learn.
Having received this news, my work day was over. August 31 was the Friday of Labor Day weekend. I was working on a brief that I needed for a hearing the following Tuesday and I was almost done with that brief. But, chances of me being able to concentrate on that were over. I explained to the partner I was working with on the case what had happened and explained that I would complete the brief by the time of the hearing. He too was supportive, but I still was in shock. I decided to go home for a little while so Caroline and I could talk about it, but truth be told we didn't know what to say to each other. We were both in shock.
Eventually, I came back to my office and just stared at my computer screen for awhile, not really knowing what to say or do. After awhile of that, it was time to learn. I am a firm believer in that google is a terrible thing for any diagnosis, but I was ready to learn. Thankfully, there are some good and quick resources on the internet for information on autism. Even more important than what I found on the Internet, I remembered that I had noticed on Facebook that I had a friend who was also an attorney who had a child with autism. That afternoon I called him just to ask questions. It was at that point that I started to learn what a good and supportive autism community exists in Guilford County. This friend was willing to talk with me and provide information about what was out there for us to learn and use. Not only was he willing to talk on the phone, he instantly suggested that Caroline and I have breakfast with he and his wife so we could talk about it in more detail. This was one of the first major turning points. Instantly learning there was a support system of our peers in place was a game changer. Quickly I learned that we weren't alone. There were other families in positions similar to us out there who we could compare stories with and get advice from based on their actual experiences with a child who had similar differences as our child. If you haven't been in that situation, you can't really know what a big deal and a comfort that is to a family going through this experience.
After getting the comfort that we weren't alone, it was time to mobilize. I was a month away from running the Chicago Marathon. I did a little checking and found that OAR, the Organization for Autism Research, had a group running the marathon. I contacted them and asked if I could join the team. Of course they were glad to help me. The reason I found this an attractive possibility was that it provided me with an avenue to tell our friends and family the news about Charlie in a manner that didn't ask for sympathy but rather asked for support. After joining the OAR team, I sent an e-mail to friends and family to explain what had happened and to ask for their financial support in raising money for OAR through my upcoming run. What an experience this was. Again, we didn't receive sympathy, which there was no need for. Instead, we received an outpouring of support in the form of e-mails in donations that topped $2,000.00 in less than 2 weeks. Again, Caroline and I learned, we weren't alone.
This has gotten very long but that is only because I have very vivid memories of August 31, 2012. I can wrap those memories up into three points of advice.
1. Don't be afraid to confront concerns you may have about your children. That fear is not going to help your children so don't ignore it in hopes that it will disappear. Instead, addressing the concerns and tackle the problems that may exist. That is really what are going to make a difference. As I look back now, the anger that I had directed towards Doctor Lowe on August 31, 2012 has taken a 180 degree turn and I have great gratitude that she had the foresight to spot Charlie's issues. It is because of that foresight that Charlie has been in therapy since a very young age and has made the great strides that he has made.
2. Know that if something happens you will not be alone. Unfortunately most families don't go through life with a perfect scorecard of things happening to them. One of the best things Caroline and I have done for our sanity and for Charlie's well-being since his diagnosis has been getting plugged into the local autism community. In our case, the autism community is a great way to learn what resources are out there and how to set your child up for the most success and the best programs,. Not only that, it is also a community where you can share experiences and stories with those in similarly situation positions. What value there is to that.
3. Ask for support, not sympathy. Bad things happen to us. That is unfortunate, but also true. It would be great if we could just close our eyes, feel sorry for ourselves, get some sympathy and the bad things would go away. That would be great, but the world doesn't work that way. Instead, I think its better to ask friends and family members for support when these things happen. Use that support to be active and deal with the bad things that happen and make the most out of them. It has certainly worked that way for us as we are almost 3 years from Charlie's diagnosis and with the support of family and friends we work through roadblocks every day and see Charlie flourish.
Eventually, I came back to my office and just stared at my computer screen for awhile, not really knowing what to say or do. After awhile of that, it was time to learn. I am a firm believer in that google is a terrible thing for any diagnosis, but I was ready to learn. Thankfully, there are some good and quick resources on the internet for information on autism. Even more important than what I found on the Internet, I remembered that I had noticed on Facebook that I had a friend who was also an attorney who had a child with autism. That afternoon I called him just to ask questions. It was at that point that I started to learn what a good and supportive autism community exists in Guilford County. This friend was willing to talk with me and provide information about what was out there for us to learn and use. Not only was he willing to talk on the phone, he instantly suggested that Caroline and I have breakfast with he and his wife so we could talk about it in more detail. This was one of the first major turning points. Instantly learning there was a support system of our peers in place was a game changer. Quickly I learned that we weren't alone. There were other families in positions similar to us out there who we could compare stories with and get advice from based on their actual experiences with a child who had similar differences as our child. If you haven't been in that situation, you can't really know what a big deal and a comfort that is to a family going through this experience.
After getting the comfort that we weren't alone, it was time to mobilize. I was a month away from running the Chicago Marathon. I did a little checking and found that OAR, the Organization for Autism Research, had a group running the marathon. I contacted them and asked if I could join the team. Of course they were glad to help me. The reason I found this an attractive possibility was that it provided me with an avenue to tell our friends and family the news about Charlie in a manner that didn't ask for sympathy but rather asked for support. After joining the OAR team, I sent an e-mail to friends and family to explain what had happened and to ask for their financial support in raising money for OAR through my upcoming run. What an experience this was. Again, we didn't receive sympathy, which there was no need for. Instead, we received an outpouring of support in the form of e-mails in donations that topped $2,000.00 in less than 2 weeks. Again, Caroline and I learned, we weren't alone.
This has gotten very long but that is only because I have very vivid memories of August 31, 2012. I can wrap those memories up into three points of advice.
1. Don't be afraid to confront concerns you may have about your children. That fear is not going to help your children so don't ignore it in hopes that it will disappear. Instead, addressing the concerns and tackle the problems that may exist. That is really what are going to make a difference. As I look back now, the anger that I had directed towards Doctor Lowe on August 31, 2012 has taken a 180 degree turn and I have great gratitude that she had the foresight to spot Charlie's issues. It is because of that foresight that Charlie has been in therapy since a very young age and has made the great strides that he has made.
2. Know that if something happens you will not be alone. Unfortunately most families don't go through life with a perfect scorecard of things happening to them. One of the best things Caroline and I have done for our sanity and for Charlie's well-being since his diagnosis has been getting plugged into the local autism community. In our case, the autism community is a great way to learn what resources are out there and how to set your child up for the most success and the best programs,. Not only that, it is also a community where you can share experiences and stories with those in similarly situation positions. What value there is to that.
3. Ask for support, not sympathy. Bad things happen to us. That is unfortunate, but also true. It would be great if we could just close our eyes, feel sorry for ourselves, get some sympathy and the bad things would go away. That would be great, but the world doesn't work that way. Instead, I think its better to ask friends and family members for support when these things happen. Use that support to be active and deal with the bad things that happen and make the most out of them. It has certainly worked that way for us as we are almost 3 years from Charlie's diagnosis and with the support of family and friends we work through roadblocks every day and see Charlie flourish.
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