I first met Angelina almost ten years ago. Her mom was my supervisor in what feels like a completely previous life for both of us. Kristy and I worked together for about a year when I discovered more about the ins and outs of Kristy’s everyday life with Angelina . This allowed me to understand autism from the other side – the side of the caregiver. I would always listen, thoughtfully, to Kristy’s stories and experiences with Angelina. But I’ll be one hundred percent honest when I say that no matter how much insight I thought I had, I would’ve never known the extent of what goes on beyond the Facebook and Instagram posts that only capture what Kristy deems presentable to the rest of us.
Angelina is a phenomenal young lady with an incredible memory. Her ability to remember specific dates is unmatched. Currently, a junior at Chicago Autism Academy, Angelina is verbal and has the ability to express her wants and needs. She is pretty independent with her own self-help skills and even partakes in small household chores. In the past, Angelina has participated in gymnastics, ice skating, fitness classes, volleyball, and other young adult social activities. Unfortunately, over the last 2-3 years, her mother has had to withdraw her from these programs because of her overwhelming anxiety and aggression. Current activities Angelina is involved in include Zumba, animal therapy, and horseback riding. Like many girls her age, she also enjoys anything to do with fashion and beauty like makeup, jewelry, nail polish, and clothing. She also enjoys listening to music and watching YouTube videos. Her mother, Kristy, has been her primary caregiver for the last 17 years.
This is Kristy’s story.
We started seeing signs and characteristics that we brought to our pediatrician’s attention as early as about 9 months, but Angelina wasn’t formally diagnosed until 18 months of age. She has always had behavioral issues, but when she was younger and smaller, they were significantly easier to handle. I can honestly say that things took a turn for the worse and all hell broke loose in April 2014, when she started menstruating. So, I blame the hormones for her extreme anxiety since then.
My entire life has been impacted by autism in every way possible. It has had a negative influence in every aspect of my life: financially, socially, emotionally, physically, etc. If we do anything that involves going out into the community, it requires a lot of planning for the “what if’s.” It’s a very isolating and overwhelming life to live. I am a single mom, working a full-time job, and on top of that, I need to communicate daily with doctors, school staff, home staff, my insurance company, and so on.
I blame the hormones for her extreme anxiety since then.
Angelina has had behavioral problems her entire life. My main concerns are Angelina’s extreme anxiety, obsessive thoughts involving corrections and direction from others, and physical aggression towards others and herself. Angelina’s main trigger for outbursts is when she perceives someone else as correcting her or directing her in a way she does not approve of.
Over the past two and a half years, we’ve tried numerous medications, and despite all the medications she is currently on and all the therapy she does, I don’t feel it has helped her in a momentous way. There is nothing normal about our lives. And I have never heard of anyone that has gone through what we experience daily and for this length of time.
Although Angelina has been receiving home ABA (Applied Behavior Analysis) services from Autism Home Support Services for the past two and a half years, CBT (Cognitive Behavioral Therapy) & DBT (Dialectical Behavior Therapy) therapies from LifeSpeed Behavioral Support since November 2016, and attends Chicago Autism Academy, her milestones seem to take longer to achieve than other experiences I’ve heard of, and during times of frustration, the setbacks make it feel like there has been no progress. I just feel terrible for everyone involved. But I know better than that because the data shows an increase in scripting and a decrease in aggressive episodes. Everyone who works with Angelina has been instrumental in her progress even when it feels like they are just small improvements. At this stage in Angelina’s life, I feel that more support needs to be available for adults as they age out of the school system, such as assistance with housing and employment.
There is nothing normal about our lives.
Family, home and school staff, and coworkers have been my support system throughout Angelina’s life, but even with these people providing emotional support, I am still burnt out and often fall asleep crying. This is not how I envisioned my life to be like. It has taken an emotional toll on both me and my family and I often worry about who will look after and take care of Angelina if something were to happen to me.
My suggestion to those who want to understand how to interact with Angelina or other people with autism is: be patient! If you ask a question, be willing to repeat it! Sometimes, it takes Angelina a little bit longer to process her thoughts in order to respond.
My advice for other parents or caregivers of someone with autism is: never take ‘no’ for an answer! Whether it’s for a diagnosis or insurance company denials, be persistent! I argued with one of her doctors last year because I felt like I wasn’t being heard or listened to. I sat in front of him in tears saying, “I know you’re the professional and very knowledgeable, but I’m her mom!” I wanted to express to him that dealing with aggressive meltdowns is getting tiresome on top of the fact that Angelina, herself, can’t be feeling good either. At that same visit, he discontinued seeing us and we were forced to find another doctor. In the end, he did us a favor.
Angelina doesn’t need anyone on her team that doesn’t take the opinions and recommendations of others who work and live with her into consideration. These are the people who know her needs and experiences firsthand. The plan now is for Angelina to attend school until the day before her 22nd birthday (IDEA – US Department of Education, Office of Special Education Programs). She’ll graduate with her diploma and my hope is that she’ll be able to take part in some type of day program and/or have a job. My feeling now is that she’d be most successful in a dorm-type residential living facility throughout her adult life.