More Than autism
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“The hardest part is knowing I wasn't able to be the mother he needed”
A few days ago I had the chance to interview a mother of an autistic child. Her name was Kylie Curtis. She told me a few stories about her child and the different things that happened because of the autism. It was extremely hard for her to go through this.
When she was sixteen, she had the wonderful opportunity to have a baby—she named him Joseph. Since this was her first kid, she was still trying to figure life and the different things out. She would have him with her twenty-four seven. For his entire baby life, he had earache after earache. Without any experience with this she did research off the internet and tried to find how to fix it. She tried nearly every method, but never got the results she was looking for. Kylie went to the hospital often to get the help she needed for Joseph. She would receive many antibiotics for her child. She used the antibiotics as she was told and things started looking better, but she could tell something was off. Kylie would talk to him and tell him different things, but he didn't even look at her or acknowledge that she was even saying anything. She didn’t have much experience, so she didn’t know whether this was normal or if there was something wrong.
In between the ages of one and two, Joseph was diagnosed with autism. Soon afterwards, she found out that his ears weren’t fully developed and he wasn't able to hear. This was very hard for Kylie Curtis. She tried to work with him and find the different ways that she could communicate. “It was hard to communicate with him because of his hearing problem, but because of the autism, he didn’t have a desire to be social. This made it almost impossible. I couldn’t talk to him. Well, I could but it didn't do anything. So I started having someone come over to teach him sign language.” They would teach him by using pictures then doing the sign language for it. Kylie learned some but not much sign language—she mostly communicated using pictures.
She had a few more struggles along the way. When she would try to feed him, he wouldn’t eat anything that wasn’t round or a circle. She would give him a banana to eat, and he refused to eat it—he would eat them when they were cut up. Kylie would cut his food into circles. His carrots were tinny pieces cut into circles; all his food was round.
“When he got his teeth, he would use them too much.” Kylie told me when I asked her one thing that surprised her. She told me how Joseph ripped up everything with his teeth. He bit the seams all along his mattress and ripped it into a million pieces all over the floor. After he was done with that, he ripped up the inside with his teeth. He ripped up almost anything he could get his teeth on. He ripped up his pillow, some of his toys, and a lot of items around the house. There was a time when she took everything out of his room because of all this. Surprised, I asked, “Were his teeth very strong?” Kylie replied with, “They weren’t. One time I got him a really strong mattress that he wasn’t supposed to be able to rip. He somehow did it anyway. As he was biting the seams his two front teeth just ripped out along with it, and he still got to the bed afterwards.” They had to take him to the dentist almost every week.
“At one point he started running away, and that was when I knew I couldn’t take care of him anymore.” Joseph would take off his clothes, open the door, and run away all the time. She lived in a low class neighborhood with gangs and criminals and was terrified with what could happen. Sometimes she would find him, the cops would find him and take him home, and occasionally a neighbor too. “I would lock up the house really good, especially at night because there was no way for me to know whether or not he snuck outside somehow. I couldn’t sleep because I was scared to. Every time I would dose off, I would soon be woken by some sort of noise. I would run to his room and check up on him to make sure he was okay.” He was taking every minute of her life. She had four other kids, and she wasn’t able to work or do anything to provide or help the rest of the family
When he turned eight, Joseph started going to a group home over the week, then went home on the weekends. This was better, but she still couldn’t take it. He soon started living at the group home, which helped both of them a lot. At the group home, the employees/helpers were able to teach him new things. Because of their professional skills, they found a way to bond and communicate with Joseph. Kylie was able to provide for her family and do things she wasn’t able to do before.
Today Kylie works all the time and Joseph is still in the home. Joseph is twenty-seven and doing a lot better. He still has problems though. Kylie only has a chance to visit him once a year and I can tell it hurts her. Kylie told me, “If I had to go back with the knowledge I have today, I still don’t know if I would have been able to do it. Even if it was my second, fourth, or fifth, I believe I would still have almost the exact same struggles I had before. The hardest part is knowing I wasn’t able to be the mother he needed.”
“Kylie Curtis: Parent of Autistic Child.” Personal Interview. 9 Mar. 2015.