Having an adult son with autism has hard and complicating challenges. My first time hearing Luke’s diagnosis in 1994 made me numb. It did not seem real.
When the neurologist told us in Seattle, my emotional state was all over the place. I knew a strong and far reaching uphill battle was imminent. The numbness turned to resolute even though I knew the daunting tasks ahead were going to require steadfast handling of the circumstances.
The first emotion I can relate to is the enormous amount of pain I have knowing my son will suffer in ways no one can understand completely. It is heart-wrenching. There is nothing worse than having something wrong with your child.
The second emotion is sadness. It is hard to define this as it comes in waves. There were days followed by years of difficult care that went into finding strategies that would work at different stages of Luke’s development.
As a registered nurse, I was taught at the university about the Kubler-Ross model regarding grief. How one feels emotionally at the loss of a normal child is devastating. It is fair to say I went through those stages such as denial and anger. Interesting enough, I did not see those stages as important to me. I felt more a need to find solutions . I wanted to fix my son.
The third emotion coming from wanting to “fix” my son was unfairness. I knew that the process involved with constant doctor appointments and behavior therapists would be daunting. There is an enormous amount involved in caring for a severely disabled person from birth up to adulthood. Parenthood is hard enough with normal children. I do not believe I ever wished for Luke to be “normal” although I know it would have been easier for him.
The fourth emotion is the constant stress and feeling of crisis a parent feels to maintain some kind of normal life. This became even more important when I had a second son. I wanted some conventional experiences for my youngest boy. I am afraid I failed him in this area. What I do believe my youngest son saw for many years was an emotionally strong mother who handled crisis after crisis in regards to health, financial, and any other problem that reared its ugly head. It seems my youngest now as an adult has a calming spirit watching this in action. He is presently a senior in college studying nursing.
The fifth emotion I want to share is lonliness. This is not the end of my emotions, but gives you an idea of my feelings . The loneliness is a reflection of trying to formulate a plan for my son’s life, but all the pieces not coming together as they should. This is currently where I am now. Luke will be 25 years old on his next birthday and so much of life has happened to my immediate family. Waves of feeling inadequate while working to try and find solutions for Luke are met with a disconnect with others involved. My definition of “others” involve a broad definition for many things up to and including a broken system. It is a complex and sad state to be in and is very hard on a family.
A proactive approach is imperative for a continual good outcome for Luke. My idea is to target independence with the help of many resources needed. A balance is truly desired and I know my emotions are not the only ones involved. I can not do it alone. The biggest hurdle to overcome is knowing that as progress is made, my son still has autism. It is not going away.
I love you Luke, Your Mom.
It is amazing what you faced in your life that you are so strong and caring. Bless you and your boys.
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I really appreciate this. Hope you are doing well.
Thank you, Donna, for your insight. My husband and I are Special Olympic coaches (many stories on my blog are on the topic of individuals with intellectual disabilities.). We have always felt that the parents and caregivers have the toughest job of all. Thanks for sharing. Marilyn Shapiro theregoesmyheart,me
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I like your blog. I will definitely check it out more. Thanks for dropping by, Alesia!
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