Hope For Parents And Families With Autistic Children: My Story

Hope For Parents And Families With Autistic Children: My Story

Angela Chapes
16 minute read

My name is Angela and I have lived in Manhattan, Kansas, for 35 years. I have autism with co-occurring mental illness - anxiety, depression and OCD.  Mental illness affects a person’s behavior, thinking, feeling, moods, and ability to function and relate to others.  However, it is what I do that defines me.  I am finding that parents or families of autistic children wonder if things will ever change.  I want to share with parents and families that there is hope for their children. Life does get better. It did for me. Even when circumstances seem impossible and situations won’t end; parents/families are influencing their children for a positive future.  I am an autistic adult who wants to share the positive influences that made me the happy, stable and independent person I am today. I am gifted in my own way. I have a voice that inspires others with hope. This gives me purpose.

My goal is to become an advocate for individuals with mental illness and autism. I want to talk about my influences and people who have guided me throughout my lifetime, helping me choose the right pathways. I have been through a lot of challenges and have become a positive person with a future. When I share my story I can help someone else find their voice. This is means a lot to me. My story is always evolving.

My greatest influence was my mom. Her teachings and love helped make me the person I am today. To me, it’s as if I’ve become her.  I had severe behavior problems as a child. I was mean, especially to my dad and my brothers. I would break things, tear out my hair, talk about the same thing over and over again and have temper tantrums.  I could have ended up a totally different person. I could have done drugs, alcohol, smoked, hung out with the wrong crowd or hurt somebody. On another path I could have been institutionalized.  This did not happen because I overcame those obstacles. It’s because my mom was always there to guide me. She held me together. She loved me and took her time with me and forgave me over and over. Mom was very patient. She believed in me and always helped me to make the right decisions. With her encouragement, I graduated college with a Bachelor’s Degree. Mom got me through difficult times and kept me out of trouble as I got older. She and I worked together to turn my temperament from being mean and very destructive to someone who is kind, gentle and pleasant to be around.  I was still very shy and had a problem with showing empathy or love for others. Although I had emotional and behavioral problems and because I had autism, it did not matter. I had my mom. For a long time, she was the only person I loved, but love from her and to her helped me to transform myself over time.

I was able to go to college successfully because my mom was my cheerleader. Each new semester brought new situations. I found it hard at first because I had to adapt to professor’s teaching styles. I had to have long conversations with my mom before each new class because I was scared out of my mind. I went. I had teachers who believed in me. It was difficult to talk to them but I did. College was hard work and taking tests was not easy. What I did paid off because I graduated. This is an achievement. I believe other autistic individuals like me can do this too. Parents and families will be a primary factor.

After I lost my mom to dementia, which was a very sad time for me, I found Morning Star, Inc. It is a peer run organization for individuals with mental illness. Morning Star is a safe environment for peers to listen and support each other.  It is about equality. Morning Star transforms all individuals with mental illness through the experience of recovery. We have programs that provide a sense of belonging, encouraging a healthy and fulfilling life.

I found inclusion and understanding.  I started off not wanting to talk to individuals, or understand the stories/feelings that made them who they are. After a while I started to grow as a person emotionally, behaviorally and skill-wise.  I started off as a member and then became employed. I learned to provide peer support. I learned from others and their struggles. I began to understand myself better; I became more loving and outgoing. I learned to show empathy. I believe I had it all inside me due to my mom instilling it in me.  This finally came out because I was in a loving, stable, and structured environment. I did so well at tasks that they gave me more opportunities. This was a learning experience for me. I was given more and more work; I know how to do bookkeeping, payroll, and reports to our main grant providers. I helped write a grant, write newsletters, and compile survey reports. I lead a group called anxiety and depression. I am also starting an adult autism group. Through this job I became an Assistant Director. This is my first successful job. This was not possible years before and unimaginable as a child.

My younger brother has had a great influence on me. As children we were not very close. I relied heavily on my mom. When she became sick I started to rely on more family members. And that started with my younger brother. As time went on we became closer and closer through conversations and him helping me when I needed it. He is a very forgiving person. He helped me to be able to look deep within myself and see how I treated him. I changed for the better because of him. I apologized and we became a part of each other’s lives. We actually formed the brother/sister relationship that we did not have in our lives growing up. He became such a wonderful support for me. I started to call him every day.  As time went on I watched him get married to a wonderful woman. I call her sister. She gives me advice. They have two children. It’s been wonderful to witness his family grow. I am happy to be an aunt to my niece and nephew.  My life has life has become more meaningful, joyful and full. Even though all those happy events happened in his life he still calls me every day. He and his wife help me as much as they can. We are family and I love them a lot.

My dad had a tough love parenting style when I was growing up and still does. I was very difficult when I was young and that was not a great mix for him and me. I could have hurt him as a child but I am so glad I never did. For a long time I thought he was a bad influence on me and was very mean. In the last few months, since I have been learning about myself, I see him in a different light. He did his best with the tools he had. He cares and loves me in his own way. What he taught me was to be independent and to have a thick skin. I am still sensitive though. He has helped me out of situations. What matters most is that he has always been there for me. That is all that matters because we are family. He is my Dad.

I have been very lucky to have two moms in my life. They are my real mother and my current mom. Not everybody has that. When I lost my mom it left a big hole in my heart and soul. I felt empty at times. I felt that way even though I found Morning Star. I thought I would not get over it. Then, my dad began a new relationship. When I Initially met her, I thought she was just going to be like a woman my dad dated before. I expected I would just have occasional friendly conversations with her. I expected her to have a cold personality.  I did not care for my dad’s other girlfriend at all. I expected this new woman to be the same but, something unexpected happened. He would go on to marry this woman. This would change me as a person and give me understanding, empathy and love.  She taught me to care for someone who was not my blood. She joined our family through marriage and can be considered another matriarch. She was important to my dad and would become important to me. She would become another mom, not just a step-mom. A mom.

This quote by Maya Angelou describes what she taught me and how I feel. “Family isn’t always blood, it’s the people in your life who want you in theirs: the ones who accept you for who you are, the ones who would do anything to see you smile and who love you no matter what.” She has also told me that she would never want to ever replace my mother. There was enough room in my heart to let her in. To me there is a difference.  She is the complete opposite of my real mother. She has a bigger personality, loves to talk, has a job, has more friends and does have a temper. She healed my heart and soul. That emptiness I felt went away. At first when I said “I love you” it was very hollow to me but became more meaningful and loving over time.  She cares a lot about me. She talks with me and I feel like I can tell her anything. When I am worried, she listens.  She has let me cry on her shoulder. She treats me as her daughter. Because she treats me like family, I gained two brothers, two nephews and plenty of aunts and uncles. She is a great addition to my life because she supports and loves me. We have become very close and I talk to her almost every day. She did change my life.

My new brother has had a definite impact on me. He and his wife and I are very close. I call him my big brother even though I am older. He has been so good to me. He understands me and includes me in activities. He, too, has a big personality; he is smart, caring, loving, understanding, and funny. His wife has become a sister because she is good to me. I feel really lucky to have them in my life and call them family. This was not that way in the beginning because my new brother and I did not know what to think of each other. He was just a step-brother to me. His wife came later. As time went by with several car rides and many get-togethers, we became a family.  I allowed them into my heart.  I learned to love them. They learned to love me. My new brother and I, through time, became brother and sister.

My cat Sami has helped me grow too. She is very sweet and patient with me. I have never heard her hiss. I got her when I was going through a learning curve in my life. She was basically abandoned at a kennel where I worked.  This experience has taught me that I can be patient and responsible. I can take care of her by myself. She is thriving and she loves me. I love her back. This is a big achievement. As a family we have had several pets. We had a cat when I was much younger and I did not treat it nicely. I did have a dog when I was a child, but my mom took care of her the most. I did work at a kennel but there were people around to help me. Sami has taught me to be a responsible adult who has an animal that depends on me. I depend on her too because when I am sad or angry she will be there to make me feel better. It has worked out for the both of us.

Believe it or not the pandemic has had a good influence on me. I started to call people to reach out because this was a scary time. I learned even better communication skills. I wanted leadership skills. I started to teach others about what I did at my job. I took several training classes to better myself.  I am now a Certified Peer Support Specialist.  Once I took this training I helped others take it. After a year, I became more motivated to branch out and learn public speaking skills, learn to share my story, and be more involved with the autism and the mental illness community. I started to search for ways to do that. I found an organization called Autism Society -The Heartland. I wanted to find a public speaking class and did much research and found Toastmasters International. I joined National Alliance on Mental Illness (NAMI) to become a better leader. So far facing my fears with these organizations is working out to my benefit and to the benefit of others.

In Autism Society -The Heartland, I found more inclusion and the drive to do better. I have been to ASH adult/parent support groups that do help me. I have decided to be on their board and will be invited to meetings in the coming months. In the future I am also starting an adult support group.

Toastmasters International has been a big influence on me since day one. I am a member with good standing.  I learned that Toastmasters International teaches you in a loving, caring and structured environment. This is very true. I feel like I am finding my voice. Toastmasters International brings me new friends and a platform to share my story and reach out to others. This organization has been a great experience for me because I have met very loving people. This challenges me to go outside my comfort zone and to try new things. For me it is working out well. Where I go from here with them will be exciting.

My friends have helped keep me stable. I consider them gifts to me.  I have more friends now than I ever had before. Several times in my life I did not have friends. When I did have friends I did not have many. In my head I would consider my pets, my friends.  I did not have friends in college because I lived at home. I was good at losing friends. My communication skills were not the best. I would not call them and/or they just stopped stop talking to me. I got used to being alone and was good at it. For a long time, I only had my mom and that was it. When I lost her, I had my dad and my brother.  When I found Morning Star, I began to make friends slowly. My best friend today is because I went outside my comfort zone. I wanted to be friends with her, so I started calling her.  I would tell her I would be there for her. It started slowly. I gained a few other friends over the years. Today, each relationship is stronger and healthier.

The pandemic brought me unexpected friends. I was surprised that happened.  I wanted to make sure people were alright. With what I was doing, there are two specific individuals I am talking about. Before this, they were people I had conversations with; I did not have much interaction outside Morning Star. They were much older than me. They are in their 70’s. I am in my 30’s. I have never had friends like this before. They are both so kind. They have life experience and have valuable advice. I can go to them and talk to them about anything.  They became important mentors to me.  The friends I have I will always keep. I love them. My communication skills are so much better so I am able to retain them. This experience has taught me that I can make friends who enjoy my company as I, theirs. My friends are of different ages, backgrounds, genders and cultures. These are why my friends are gifts to me.

I am always evolving. I never stop learning and wanting to grow and change. Through my life I have gained values. I don’t smoke, drink, do drugs, hang out with the wrong people or do bad things.  Other values I find important are to treat others with respect because this is how I want to be treated. I have learned to love myself and see myself as important. I am confident because I am able to share my story, learn from it. My goal is to gain more of confidence so I can stand up for myself. I can be confident to step in and help in situations, when I see something that is not right. Loyalty is important because I will always be there for my friends in good and bad times. I believe and encourage others.  I have become a responsible, loving, caring, kind, gentle, pleasant, compassionate and empathic person. I am capable of much more. I have learned to understand myself and control my behavior and emotions.  I will say this again; what I have learned and how I carry myself define me. 

What I am finding through joining these organizations I have an inspiring story to share. I look and go after new opportunities to grow. When I find something, I try it. Sharing my story has made me feel good inside. When I meet parents, families, autistic children or adults in the future I am in their corner. My mom would be proud.

 

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