TACAnow Guest Blog: By Amber Betzold
Growing up with a profoundly autistic sibling has been an adventure. It has been at times both painful and enlightening. I think in some ways I matured faster than my peers with neurotypical siblings. Growing up with my brother, Beau, required me to learn patience, and I like to think it has helped me to embrace an “it is what is; we’re going to do our best” mindset early in life. My thoughts and feelings about Beau and his illness evolved throughout my childhood. Looking back on and divulging all the silly things I thought and felt through the years is a little bit embarrassing for me. The thoughts that stick out in my memory are the ones that seem the most wildly misguided to me now. However, my hope is that the insights I share will maybe help parents understand their neurotypical kids a little better. Before I go on, I want to remind you that neurotypical kids are just as different and vary just as widely in their thought patterns and emotional responses as spectrum kids. I can only speak to my own experiences, and I have no concrete evidence that other siblings have any of the same feelings or thoughts about autism that I had as a kid.
My earliest memory of Beau’s illness was a general sense of unease brought on by eavesdropping on hushed, anxious conversations between my parents in the days leading up to Beau’s diagnosis. I was about four years old at the time. I definitely remember feeling that something was not quite right with our family, but I don’t know if I connected that feeling to Beau right away. I knew my parents were worried, and as a four year old, that is a pretty scary thing. If the grown-ups are worried, it must be serious. However, at first I had a really difficult time understanding why they were worried. Looking back, I think this was largely because I had a hard time understanding the regressive nature of Beau’s autism. He had responded to his name previously, so why wouldn’t he now? He had said words like ‘cracker’ and ‘car’ and pointed at objects, so why wouldn’t he now? To the four year old me, it seemed completely implausible that Beau could “un-learn” anything. In my four-old mind, the obvious conclusion was that he was faking it in order to get my parents’ attention. I held on to the belief that Beau would one day just snap out of it and admit he had been faking it all that time. I can remember being as old as seven or eight and wishing he’d just snap out if it already. Though, by that time I’m pretty sure I knew that wasn’t going to happen, but I held onto the thought, because the delusion that Beau was going to “snap out of it” was a lot easier to deal with than the thought that Beau was actually disabled.
The problem with my four-year-old thought process that lead me to believe Beau was not actually sick was that it caused me to resent Beau himself instead of his illness. Why wouldn’t he just be a big kid already and start talking? Why did he have so many tantrums? Why was he always so selfish? Though I don’t think I ever actually told my parents I thought Beau was faking it, they unwittingly did what I needed to help me reverse that thought process by explaining to me as best they could what was wrong with Beau and why he acted the way he did. I remember my mother explaining the basics of leaky gut and why Beau had to eat GFCF foods when I was maybe five, and later when I was maybe seven or eight talking to me about heavy metals and chelation. These conversations not only made me feel included in the family discussion of Beau’s treatment, but also helped me to understand that Beau was definitely sick. To this day I am incredibly thankful that my parents always took the time to explain to me in terms I could understand what was going on with Beau. I think one of the best things you can do for a kid is answer all of the questions they ask about the world around them as honestly as possible. Kids can understand a lot when you take the extra time to explain things to them.
As I got older, I understood Beau’s illness much better, but I still found myself competing with him for attention. Around eight or nine, I saw something on TV about autistic savants. As that simmered away in my kid brain, I developed a fear that Beau would recover and have some sort of miraculous talent. He would surely be able to do crazy math in his head or recite the names of the capitals of every country in the world, and then where would I be? At that age, I found a lot of my self worth in the fact that I was smart. I lived for standardized test score reports and parent-teacher conferences, because to me they were the ultimate affirmation that I was special. Beau already dominated much of the conversation at home and at family functions, so I was sure that if Beau recovered and was as smart as or smarter than me, I would be doomed. No one would ever talk about me or my measly accomplishments again. This was a thought pattern I had to recognize as irrational and grow out of on my own. I was probably thirteen or fourteen by the time I completely let that one go.
The final thought-pattern I want to talk about is the most difficult to gain perspective on because it still affects me at eighteen — guilt. I feel immense guilt that I resent Beau’s autism and what it has put my family through. Intellectually I can separate Beau from his autism, but sometimes emotionally that’s still hard. I often feel as if other siblings all have “special relationships with their special siblings,” and to this day I don’t feel like I have that. I don’t know whether to blame myself or the severe nature of Beau’s autism for the fact that we don’t have that kind of relationship..
I remember in particular one hot August day when the guilt hit me hard. Beau does not generally have seizures, but the summer I was thirteen I vividly remember witnessing him have a grand mal seizure and being frozen in utter terror as, “Oh God, he’s going to die and it’s going to be my fault because I didn’t love him enough. It’s my fault. God is punishing me” ran through my head in a frantic loop until Beau stopped convulsing and the paramedics showed up. Even at the time, I knew these thoughts were irrational, but that panic of that emergency situation triggered those feelings of guilt in me, and it was overwhelming.
At eighteen, I’m in many ways still a kid, and I try not to think too hard about the future. However, I do get scared of what is going to happen when my parents are too old to care for Beau. I know I will be involved in Beau’s care as we get older, and there is no predicting exactly what that is going to involve. There are going to be a lot of hard decisions, and it’s not going to be inexpensive either. There are days when I think I better win lotto or marry rich. I just really hope I can give Beau the kind of care my mom provides for him for the rest of his life, and that will be a huge job. For now I’m taking it one day at a time. I know my mother will provide all the help and guidance she possibly can, and together we’ll be able to figure out what’s best. I learned a lot growing up as Beau’s big sister, and now that I’m more or less grown up, I know I will continue to learn from being Beau’s big sister for the rest of my life.
Editors Notes (From Lisa):
During April autism ACTION month. We cannot forget the siblings of children living with autism. They too are very affected by autism and the wake it leaves. We had a blog post about the “Forgotten Children” not too long ago and I feel compelled to link that to this blog post as well. Thank you so much Amber for sharing about your beloved brother Beau.
Beau and Amber’s parents are TACA Chapter Volunteers in Illinois. Mom to Beau and Amber Linda Betzhold has also contributed on the TACAnowblog. Linda also speaks frequently at TACA chapter meeting to help educate and empower parents living with autism. We applaud their efforts.
Linda’s recent TACAnowblog post Holding onto Hope: http://tacanowblog.com/2012/02/02/holding-on-to-hope-by-guest-blogger-linda-betzold/
Related blog post: The Forgotten Children: http://tacanowblog.com/2011/06/29/the-forgotten-children/