Many who read my blog, and many who know our son personally, assume that he has been diagnosed with high functioning autism or an autism spectrum disorder. Over the last eleven years, he has been given many different diagnoses because none of the currently available diagnosed disorders accurately apply to him. He has been labeled as having global developmental delays, developmental motor coordination disorder, expressive language disorder, hypotonia, coordination disorder, Attention Deficit Disorder, learning disorder, auditory processing disorder, and neurological impairment. Because he is very social, he has never met the qualifying characteristics for an autism spectrum disorder.
Recently, I have started reading research that is being conducted on females on the autism spectrum. Some new studies report that the qualifying characteristics of autism may present themselves differently in females than in males which may account for their under-representation within the disorder. Similar findings have been found in research when it comes to females and ADD and males when it comes to depression. In each condition, gender may play a role in how the individual tends to display the characteristics of that particular disorder. I have also started reading some clinical research on the characteristics of rigid learners as I think it accurately describes some of my son's learning styles and tendencies.
Regardless, accurate diagnosis or not, we are raising a child who is impulsive, unorganized, resistant to change, and prone to internalize his concerns and anxieties. When life is rolling along as expected, all routines and events proceeding as planned, our life is easy, pleasant, even fun. Unfortunately, life doesn't roll along without bumps and pitfalls along the way. It's full of unexpected twists and turns. As in all families, these are the moments that present us with challenges to address as individuals and as a family.
For most emotionally mature individuals, when life throws something at them that is unexpected, they stop; assess the situation; choose a course of action; and proceed. Unfortunately, when you are dealing with someone who is not yet emotionally mature, or who is rigid in their processing, the stumbling block can become insurmountable. He becomes mired in the moment without the ability to assess, choose, and move forward with a course of action. Our son has this tendency. Minor changes in schedule; minor changes in how he imagined or expected something to be; or minor changes in how he planned something, can cause him to shut down resulting in behavior or emotional strain that must be addressed. For example, I received a call from the school forewarning me that the music director had changed the afternoon schedule to allow the kids time to return to their homerooms to hand in their Chromebooks before dismissing for the day. A thoughtful change on the director's part. Unfortunately, this change had not been discussed with the students in advance so our son hadn't had time to process how this would impact him. He become stuck in that moment of trying to process the change. He repetitively stated that he couldn't go get his Chromebook and return it because he would be late to meet his brother (who meets him after school and drives him home - who has no time set in stone - who wouldn't leave without him). It didn't matter how logical their arguments to try to convince him that it was okay. He would have time. He could go get his Chromebook. He would make it back in time. It wasn't a big deal. The rationalizing, explaining, and soothing continued to no avail. Our son cried and spun (literally) and repeated himself over and over. This new teaching team had never witnessed this side of our son and had no idea how to help him move forward. They wanted to let us know that our oldest son was getting our youngest son in an agitated state. I assured them that our oldest son was unfortunately more than used to this and more than capable of coping with the situation. One of the blessings/curses of growing up with a brother like his is an increased ability to deal with an irrational child.
My husband has been having migraines for over twelve days now. He has lost his sense of taste, except for bitter. As a result, an MRI has been ordered for this coming week. Over the last two weeks, our son has been incredibly impulsive and disorganized in his thinking. His defiant behavior has also increased. I have deliberately checked my attitude and my response to his behavior. I've also attempted to make time for the two of us to do activities together that he enjoys. My husband was questioning this morning what could be the cause of this new change in behavior. (We often problem solve together when we notice new trends or concerns in behavior) I told him I wanted to get some one-on-one time to talk to our son because I felt the behavior was rooted in his concern for my husband and his undiagnosed medical condition. Because our son tends to internalize his worries, he doesn't vocalize the things that are upsetting him. Instead, we tend to see behaviors that indicate something is wrong. By chance, while I was getting ready for the day, my son wandered into my room. I casually asked him if he had any questions or concerns about how his Dad has been feeling lately. Wow! Open the floodgates! His biggest worry? Did his Dad have cancer? He saw on an old episode of ER that a guy had to get an MRI of his head and it showed that he had cancer and was going to die. Wow! All that has been living in that brain that didn't know what to do with it. So we talked. We talked about what has been going on; how Dad has been feeling; what it could be; what they would do to test for a cause; what we would do as a family to deal with it. It was a good moment. We followed it up by going out on the river fishing, just the three of us. The day has been much smoother since then. Is it a magic cure? No. But it gives us insight into what may be driving the recent changes in behavior (besides those pre-teen hormones).
Because our son is quickly approaching his teen years; because he no longer wants us to "work with him"; because he just wants us to be his parents and not his teachers, we are going to discuss options with his neurology team at this week's appointment. Is there someone in our area who works with kids on social skills training? Is there someone in the area that works with kids on processing how he feels and putting those feelings into positive action? We are quickly approaching the point in life where he wants us to be his parents who love him and hold him accountable and guide him but do not "help him" or "teach him" as we have had to do in the past. We now need to outsource that duty to someone dependable. In the meantime, we will encourage an open dialogue with him to help him find his voice. His empathy skills are already phenomenal. His sense-confidence is light years ahead of where it should be for his age and circumstances. His understanding of himself and how he works, is growing stronger year by year. He is becoming a member of his own treatment team. I pray we find the right person to help us guide him on that journey. I pray we continue to have the patience and endurance to guide him as he grows. Some days are easy. Some days are hard and we don't feel up to the challenge. Our roles are changing as he grows. I pray we recognize when it is time to step forward, time to step back, or time to walk alongside our young man as he grows.
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