Long Island Behavior Analysis Conference

Making It Through Loss and Pain When You Have Autism Is a Challenge

I am writing this piece to let any autistic individuals know that, when life throws challenges, you can make it through the pain. You may hurt, feel like your life has turned upside down, and you may feel lost. Taking on painful challenges can make you stronger. Individuals with autism can conquer anything. When a parent is someone’s main support and they have dementia it is very difficult. However, there are other family and supportive friends to help. I hope my words encourage people with autism or their parent/families get through the difficult challenges of loss and pain. You are strong.

Angela Chapes

Angela Chapes

When I was young and when I became an adult my mom was everything to me. She was my rock; she held me together. Mom was always patient with me; I was a challenge. She was the kindest, most loving, and gentlest person you could meet. She would not hurt a fly. When my mom was diagnosed with breast cancer, my world was torn apart. My mom was sick and, for the first time in my life, I could not depend on her. I would have to help take care of her. I had a truly hard time grasping how I could be on my own. I needed her rock steady pillar of wisdom and strength. I had to grow up. I would have to rely on other family members like one of my brothers and my dad. It was hard because I was not so great to them growing up. We did work together to take care of her. I developed the capacity and ability to change. I took care of my mom the most because I was on a break from my job and moved home. I found strength inside me.

When my mom had breast surgery and chemo she lost a lot of weight and her hair. I was so sad. All of this took the spark out of her. I felt lost seeing her that way. I would pick her up and take her to appointments. I would either wait or come back. I had hoped that she was going to get better but things got worse. Along with the cancer came dementia. We tried treatments for the dementia. No treatment would work. She was truly lost. There was no hope getting her back. My mom was not my mom anymore. She became someone else. She was not there, which was excruciatingly painful.

She stopped recognizing me and trusting me. For some reason, she still trusted my younger brother. I tried my hardest to take care of her though. I had to feed her because she was forgetting how to eat. I had to put on her clothes because she no longer knew how to dress. I had to take her to the bathroom. Then she needed to wear diapers. She could not do little things like open a door or a gate. She was much more aggressive. She would scream bloody murder when my dad would give her showers. Then when they were done she would defecate on the carpet. This was truly horrible to hear and to witness. She sometimes screamed part of the night and would not sleep. She would scream at me which hurt me badly. Sometimes I would lose my patience because I could only deal with so much. When my mom was well she never lost patience with me and now I felt like I was letting her down. So through all the sadness and pain I took care of her. Even when I cried to my brother and I felt like this was too much for me to handle, I still took care of her. I became her rock even though she was unaware of it. We all took care of her until we could not anymore.

There was a really bad night when my mom would not go to bed and she screamed and screamed and screamed. My dad tried to get her to go to bed. She became more and more aggressive. She wanted my younger brother to be there; he could not get her to go to bed either. This was such a bad night. My dad finally said we could not take care of her anymore and made the decision to put her in a nursing home.

She was taken to a nursing home where she continued her downward spiral. She was threatening to a nurse. After a while she could not talk or walk very well. When we left her, I felt my heart break and sink within me. Something was missing. That something was my mother. I did not go visit her much at first because it was difficult to see her like this. I stayed away because I felt hurt. I was in a group at a center which made me realize I was being selfish not seeing her. Even though she was too far gone, I should be there to support her because she never gave up on me. In her final days she was comatose. When she passed I was happy she was not in pain anymore. I did not cry because I had lost her a long time ago.

After she died, I did not think about her much or at all. I used to think I was a cold person because of that. I really wondered what was wrong with me. When I mentioned that to a friend she told me that was not the case. I tried to forget because it is really painful to remember her at the end of her life. Thoughts of how we switched places, behavior-wise, were painful. I felt guilty. My friend made me realize I still loved her and I always will. I am not cold. This last year, through friends I began to see myself differently. Another friend suggested I could talk to her every day. This was really great advice because I remember the ray of sunshine she was. Whatever I do in life she is still my biggest cheerleader. Writing and speaking about my mom helps me too, because it has been therapeutic and healing. This has been helpful to me because I did not realize I was still in pain. By recognizing my pain I am growing.

When you lose someone important to you the strength you gained from them shows up. My mom had cancer and dementia and it was truly the worst challenge and experience I have ever gone through. She taught me so much. It took me a long time for the love and caring side to be seen by others. My mom taught me to have a lot of determination. Never give up. Life has its challenges. This will help you get through a hard time along with the support of your other family members. Even though I have autism, I learned from my mom how to live life to its fullest! It took me a long time to be able to do that. I emulate her and live through her memory by setting an example. I developed my own unique qualities and characteristics along the way by expanding my horizons. I grow by reflecting on my experiences and learning from them as I write and speak. How you take on challenges and make it to the other side shows you who’ve you become. Even with autism I became stronger. I became a better person and I have so much more to offer.

My name is Angela Chapes and I am an autistic adult with anxiety and OCD. I have had depression in the past. I am 39 years old. I was not diagnosed with autism until my late 20’s. It was years later that I started figure out who I was. Thanks to the positive and supportive people in my life. I have a very encouraging job. I am transforming and growing at lightning speed. Learning all I can about leadership, advocacy and other organizations that can help shape my future. I want to be a voice for individuals with autism and mental illness. I love being busy, writing and speaking.

For more information, you can email Angela at aechapes@yahoo.com.

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