Over the last several months, I have been taking my youngest son to multiple specialists in an effort to truly figure out what is at the heart of his developmental and behavioral challenges. When he was a baby, we were told that he likely was "just delayed" as are so many kids. I think they tell parents this because it softens the blow, and the early intervention folks know that they are not going to be around anymore when you figure out that they were wrong. Just like our first allergist said there was a good chance he would outgrow his allergies by the time he was four. And now our current allergist tries to hide her alarm when she sees the 5-centimeter welts rapidly emerging on his back when they do a skin test to look for possible reactions usually measured in millimeters after 10 minutes.
When the Wise Old Owl was initially diagnosed with food allergies, I pretty much went through all the stages of grief that everyone talks about. And then did the same thing shortly before he was two and his SLP said he had apraxia. We moved forward with implementing the therapy we thought would help. All that I read suggested kids with apraxia often had sensory issues and low muscle tone, check and check. We went with that for awhile. After some other health issues were piled onto his list, we saw many other specialists, did genetic testing, and were told to just keep on treating each symptom, that his prognosis was good. I don't know if that was good advice, but it was probably what I needed to hear at the time, since we were soon to embark on the complicated process of an ASD diagnosis for Herbie.
Educators began observing Herbie and making gentle suggestions that we have him evaluated. I took their lists of observations to our doctor who immediately referred him for an autism evaluation. There was no wait and see or telling me he was fine or that he would outgrow it. All of the sudden it was obvious to everyone that Herbie was on the spectrum, when a month prior, I had believed that he was completely normal and that his brother was the one with issues. I don't remember going through any grief for Herbie, though. His diagnosis was more of a relief, it gave us the key to unlock services that have helped him tremendously.
As we went through Herbie's evaluation process process, I couldn't help but compare the challenges of my two children. The specialists would ask about various things, such as sensory integration. Well, Herbie is an extreme sensory seeker. That fits with autism, they would tell me. What about the Owl who is an extreme sensory avoider? Well, some kids just have sensory issues, they said. Herbie never stops moving and loves to crash into things, again common for ASD. The Owl never moves, he could sit with books or puzzles for hours, but apparently that's not obvious ASD. Herbie would not participate in circle time activities or play with kids at school, typical of kids on the spectrum. The Owl, well, apparently he was just anxious to interact with kids because of his speech disorder. Herbie was in a phase of lining things up everywhere when he was being evaluated. Everyone nodded their heads and said that was a sign of ASD. The Owl had been doing that ever since he started picking up toys, but apparently it's not a red flag for him. Herbie is rigid about routines, can't be interrupted, etc. So is the Owl. Herbie loves to quote movies. So does the Owl, obsessively, and he is much more of a mimic than his brother. I could go on and on. Somehow these traits only indicate ASD in one of my children. I really can't figure it out. But Herbie's autism is "obvious" to everyone and the Wise Old Owl's lack of autism is equally as obvious.
I kept thinking about the relief I felt after the ASD diagnosis for Herbie and how it led to ideas/strategies/therapies and progress. I wanted the same for the Owl. We went to see a neurodevelopmental pediatrician. That sounded really promising, but he couldn't be bothered to read any of our 500 pages of intake paperwork that had taken me 2 weeks to fill out. The ones that were sent with a letter stating multiple times in bold underlined font how imperative it was to complete everything well in advance of the appointment so the doctor could review it. He didn't even know why we were there until he walked into the room and read my son's name off of his chart. Then there was the neurologist, much kinder and slightly more helpful. She interpreted the brain MRI and told us of the "non-specific" findings of some abnormalities in the regions of the brain that control motor planning. Then said we should keep on doing the same therapies we had in place with no changes, not withstanding the fact that his progress in some of those has been very poor.
More recently, we went to see a developmental pediatrician who is known for his expertise in complimentary medicine. He looked over the Owl's history and therapy reports and discussed with me how his poor nutrition could be influencing his lack of progress. We talked about "leaky gut syndrome" and the cascading effects--food allergies, poor immune system, malabsorption and developmental delays, feeling unwell and subsequent anxiety, sensory issues and rigid behaviors to create some sense of order. It made a lot of sense. And then he said there was no one diagnosis that could capture his challenges. Again it was hard for me to hear, but after three appointments with this doctor and seeing his thoughtful consideration of the issues, I think I can believe him. He had a lot of recommendations for supplements and strategies for reducing anxiety, things that he thinks will help him to make better progress in his current therapies. This is really what my son needs, so I am trying not to be unsettled by the lack of a name. If he hadn't gotten help through early intervention, would he be nonverbal and diagnosed with ASD at this point? Maybe. But for now I will stop trying to put a name to his challenges and put my energy into following this new path to which we have been directed.
When the Wise Old Owl was initially diagnosed with food allergies, I pretty much went through all the stages of grief that everyone talks about. And then did the same thing shortly before he was two and his SLP said he had apraxia. We moved forward with implementing the therapy we thought would help. All that I read suggested kids with apraxia often had sensory issues and low muscle tone, check and check. We went with that for awhile. After some other health issues were piled onto his list, we saw many other specialists, did genetic testing, and were told to just keep on treating each symptom, that his prognosis was good. I don't know if that was good advice, but it was probably what I needed to hear at the time, since we were soon to embark on the complicated process of an ASD diagnosis for Herbie.
Educators began observing Herbie and making gentle suggestions that we have him evaluated. I took their lists of observations to our doctor who immediately referred him for an autism evaluation. There was no wait and see or telling me he was fine or that he would outgrow it. All of the sudden it was obvious to everyone that Herbie was on the spectrum, when a month prior, I had believed that he was completely normal and that his brother was the one with issues. I don't remember going through any grief for Herbie, though. His diagnosis was more of a relief, it gave us the key to unlock services that have helped him tremendously.
As we went through Herbie's evaluation process process, I couldn't help but compare the challenges of my two children. The specialists would ask about various things, such as sensory integration. Well, Herbie is an extreme sensory seeker. That fits with autism, they would tell me. What about the Owl who is an extreme sensory avoider? Well, some kids just have sensory issues, they said. Herbie never stops moving and loves to crash into things, again common for ASD. The Owl never moves, he could sit with books or puzzles for hours, but apparently that's not obvious ASD. Herbie would not participate in circle time activities or play with kids at school, typical of kids on the spectrum. The Owl, well, apparently he was just anxious to interact with kids because of his speech disorder. Herbie was in a phase of lining things up everywhere when he was being evaluated. Everyone nodded their heads and said that was a sign of ASD. The Owl had been doing that ever since he started picking up toys, but apparently it's not a red flag for him. Herbie is rigid about routines, can't be interrupted, etc. So is the Owl. Herbie loves to quote movies. So does the Owl, obsessively, and he is much more of a mimic than his brother. I could go on and on. Somehow these traits only indicate ASD in one of my children. I really can't figure it out. But Herbie's autism is "obvious" to everyone and the Wise Old Owl's lack of autism is equally as obvious.
I kept thinking about the relief I felt after the ASD diagnosis for Herbie and how it led to ideas/strategies/therapies and progress. I wanted the same for the Owl. We went to see a neurodevelopmental pediatrician. That sounded really promising, but he couldn't be bothered to read any of our 500 pages of intake paperwork that had taken me 2 weeks to fill out. The ones that were sent with a letter stating multiple times in bold underlined font how imperative it was to complete everything well in advance of the appointment so the doctor could review it. He didn't even know why we were there until he walked into the room and read my son's name off of his chart. Then there was the neurologist, much kinder and slightly more helpful. She interpreted the brain MRI and told us of the "non-specific" findings of some abnormalities in the regions of the brain that control motor planning. Then said we should keep on doing the same therapies we had in place with no changes, not withstanding the fact that his progress in some of those has been very poor.
More recently, we went to see a developmental pediatrician who is known for his expertise in complimentary medicine. He looked over the Owl's history and therapy reports and discussed with me how his poor nutrition could be influencing his lack of progress. We talked about "leaky gut syndrome" and the cascading effects--food allergies, poor immune system, malabsorption and developmental delays, feeling unwell and subsequent anxiety, sensory issues and rigid behaviors to create some sense of order. It made a lot of sense. And then he said there was no one diagnosis that could capture his challenges. Again it was hard for me to hear, but after three appointments with this doctor and seeing his thoughtful consideration of the issues, I think I can believe him. He had a lot of recommendations for supplements and strategies for reducing anxiety, things that he thinks will help him to make better progress in his current therapies. This is really what my son needs, so I am trying not to be unsettled by the lack of a name. If he hadn't gotten help through early intervention, would he be nonverbal and diagnosed with ASD at this point? Maybe. But for now I will stop trying to put a name to his challenges and put my energy into following this new path to which we have been directed.
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