Dealing With the Grief of Autism

I am learning to cope with grief. It is not the normal sort of grief that we all tend to associate with the loss of a loved one. Though similar, it is grief from the perception of shattered dreams and hopes.

While I have never been directly affected by cataclysmic events, such as natural disasters or wars, I suspect the feeling of grief is the same. That is, people are faced with a seemingly hopeless situation which is beyond their control. I believe the process of recovery can be very difficult in these situations.

In my case, it is parenting an autistic child. I love my son, David, very much. I try to focus on the positives, but sometimes I am overwhelmed by the enormity of the task before me.

There is also guilt associated with my feelings of loss. That is, David is a wonderful child that deserves his fair share of my time and devotion. Because of his limitations, my efforts are devoted to aspects of his development that are not typical. That is, my strength and energies are devoted to finding specific ways around his disabilities rather than playing ordinary games and engaging in other age appropriate activities.

I also struggle with my environment. I know it may sound like I am whining. Perhaps I am whining, but our society is not built around our specific needs. I happen to be among those who believe that society cannot be built around every possible circumstance. I believe it is my duty to learn to cope with society rather than have society cope with me. As a parent of an autistic son, I believe I must find my own way through the fog. On occasion, I find comfort from kind words and understanding. Unfortunately, I sometimes find the misguided perceptions of others to be extremely hurtful.

After reading Dr. Charles Stanley’s book, “How to Cope with Adversity”, I am starting to see how I have responded negatively to adversity. He asserts that we can respond in two ways, positively or negatively. While I have found positives, I have also failed in some ways. I am learning to see the failures.

I suppose I agree with Dr. Stanley that adversity can be a gift, albeit not an easy gift to receive. By the way, I recommend this book to all parents of special needs children.

While wallowing in my pain, suffering and disappointment, I have not grown as a human being. I am now trying to recognize this adversity for what it is. I believe it is grief. Perhaps it is odd to say, but I suppose I am lucky to have experienced a similar grief in my life already. My mother suffered from hardening of the arteries which resulted in dementia. When she died, I felt very sad, but the grieving process had been in place for many years. I began grieving the loss of my mother when she began to show signs of severe mental deterioration.

Though similar, David’s story has hope. I see improvements as he gets older. In some ways, the grief has been for no good reason. That is, I have yet to see the full potential of this child. I will always have hope for him. But sadly, this is only part of the grieving process.

There is another form of grief that is very selfish. It is the loss of my own freedom. I am starting to realize that some of my grief has been manifested in my behavior towards others, which has made it even more difficult to cope. For example, some folks may not realize that having a special needs child can be extraordinarily confining. That is, parents and caregivers cannot simply take their children with them everywhere they go and we cannot just let them go outside to play. It is a process of learning to deal with the outside world, so it is limited. In our case, we struggle to do ordinary activities such as going to the store or to a restaurant. We have worked very hard to make these activities possible, but we usually go to places where the people know us and make some exception for certain eccentricities. Going to other otherwise normal places has been extraordinarily difficult for us. That is, we remain intensely aware of how our presence can affect those around us. Therefore, most of our recreational activities are through special needs organizations.

There are other elements of our lives that are affected. For example, because of the nature of David’s behaviors, I stay at home to help manage his care. While I am David’s father, I am starting to understand the concept of sacrificing my career, a concept that most mothers understand very well. I suppose that we are very fortunate that my wife has been successful in her career. I still feel the occasional sting from the comments of some folks who really have no idea. I am learning to accept and forgive the misunderstandings of those around me. However, I do have a full time job and it is to help my family. Nonetheless, I have my own misunderstandings about the world around me so I have no right to force my particular set of unusual circumstances into the sphere of ordinary perception.

There are many other ways in which we are negatively impacted, but I will go no further than to say that we need to move beyond heartbreak and find the positives in life.

Like many other parents of special needs kids, I am learning about David’s condition and the treatments that are available. I am learning to become an advocate for my son and to find whatever resources that may be available to him. This is another topic for another day, as it has not always been easy for me to accept outside resources. I have worked from home to create a small music publishing business that has become a source of great joy for me, integrating my passion for music with some of my professional skills. I am grateful for the potential opportunities that I am able to see from this new perspective that is adversity.

Meanwhile, I am struggling to find my way back. I am trying to accept this hand that we have been dealt though I have become extraordinarily sensitive to certain misunderstandings among those with whom I come into contact. It is most certainly my problem, not theirs. It is a process of learning to cope with the natural order of society and norms while living in a vacuum that is not part of the natural order. I suppose I am learning to live in two realities. The reality of human perception and the reality that I live every day.

Article written by Del Boland and distributed by permission of Del Boland and Blue Muse Publishing, a free online resource for songwriters, bands, and musicians.

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