Like a storm, it builds, and with the right conditions, it will grow. Will it be just some rain or snow, or could there be thunder? Are the winds going to pick up and turn it into a disaster? Is it going to become a hurricane or twister? You watch for the signs, and you listen to the experts. You prep your shelter. You increase the supports. You pray it will just be a false alarm. Meanwhile, asking yourself, is all this still enough, or do I need more?
When the storm is coming and seems relentless.
The velocity gets to be too much.
When you feel yourself being pulled into the vortex.
Hold on as tight as you can.
Even when your herd is scattered and debris is falling all around you.
Hold on tight.
You hear the sirens blaring and others crying out for help.
You want to help but can’t.
Your arms are cut and bruised from holding those reins so tightly.
Don’t You Dare Let Go.
You finally see a glimpse of light.
Hurry, before it goes away, and maybe, just maybe, you can find a rainbow.
I started working with kids with disabilities in my early twenties. Taking a job at a residential home specifically for kids aged between seven and twenty-one with very complex behaviors. Pointing out the very complex behaviors, this is not all residential houses. Each home is very different; some have more complex behaviors than others, some have none. My employer made me aware of what I was getting into from the start. I grew up having several family members as nurses and working in the field, so I knew a little from the start. Besides, it’s working with kids and helping others. Little did I know that taking this job would change my whole outlook on things and help prepare me for a very long and challenging journey, and that some days feel like I will never see the end of that rainbow.
I had never heard of Autism before starting my training. It wasn’t something many people talked about and was just starting to become more openly discussed. When I first started, there were only a few of the residential houses with individuals with Autism. The house I would be working in was one of them. It was considered one of the most behavioral in the agency that I worked for at the time. Most of the individuals were nonverbal or had limited communication skills. This was before PECs (Picture Exchange Communication), and iPads got more common. At the time, most of the individuals had no experience with using them either. You can imagine the frustration it would cause the individual and the staff not being able to show someone what you needed or a staff not being able to figure out the person’s needs. So yes, the individuals I started working with had behaviors. I will not sugarcoat any of the things I saw or went through with them. It is the side no one wants to show or see, but it is to me important that people see all sides of things. The good, the bad, and even the ugly side. Without being open to all aspects of it. How can we truly help others understand and learn from it? Most of all, so that we can help the individuals and families.
As I look back at all the things we didn’t have access to like we do now. The knowledge from all the studies and different approaches tried over the years. We have come a long way in the last twenty years. Sometimes I think we tend to forget that.
So, with no real way to communicate needs and wants, no fidget or sensory toys yet. I went to work in this residential home that had several individuals who had a range of disabilities, most with a diagnosis of Autism. Between them, they had a range of challenging behaviors from Elopement (running off), Sib (self-injury), Pica (eating things they shouldn’t), throwing or breaking things, and physical aggression toward others. Pretty much between the six of them, everything that can come with Autism was present. Please keep in mind these are individuals with very challenging behaviors that were placed in a home due to these behaviors. They are not, by any means, what everyone with Autism does. Later on, in my career, I worked with individuals with Autism who had none of these behaviors.
My eyes had been opened right at the start of my journey. Working with these individuals, some of the most severe cases of Autism my place of employment had seen at that time. I won’t lie, I was very nervous and somewhat scared, but within a short time I knew this was where I belonged and what I was meant to do. They didn’t have many staff that would work with them, as you can imagine. It wasn’t long before I noticed the revolving door, as we called it, where I worked too. Staff usually only lasted a few days before Quieting or transferring to a different residential house. Besides the obvious behaviors of getting hit, kicked, or bitten, you also had feces (poop) or other Bodily fluids thrown and spit at you. All of those, I understood why some people couldn’t do the job. A job in caregiving is definitely not for everyone; I get that. Especially with individuals with special needs. None of us are there for just a paycheck either, trust me. I started out making minimum wage, which at the time was less than half of what it is now.
Looking past that, the bond I grew with each one of them I will never forget. Each individual was so different from the other, just as everyone is different. That is, after all, what makes us who we are. Some days were very hard, and yes, the thought of going to a different house did cross my mind some days, but the truth was knowing there were only a few that would work with them kept me going back every day. Yes, they all had families that cared for them and loved them more than you can imagine. Their families would visit as much as possible, but in reality, some of them lived far away or had no transportation. Let’s not forget taking time off from a job to come visit.
In just a few years, I had gone to more trainings than I can count. The new things being taught on how to work with the individuals. All the new things coming out to help with sensory processing. How to address the more challenging behaviors and the different communication devices and techniques becoming more available. The different programs and Early intervention starting to take hold. Most of all, the behaviors in the individuals I worked with started to decrease. One thing I noticed as a staff member was that the number of individuals with Autism was getting to be not so uncommon. Also, what was thought of as mostly in males and only one child in a family didn’t seem to be the case anymore. We started getting more girls and siblings. The whole stereotype of what was thought to be had started to be thrown out the door.
The experience I would gain and the things I learned early on would help me in the future. I got to work closely with specialists in all different areas. Helping collect data and trying different methods to help the individuals cope with sensory needs and calming techniques for behavior management. The different special diets that seemed to work for some, but not others. Basically, if it was thought of, we tried it.
With all that training and a few years of experience working with individuals with Autism and other disabilities. Would give me somewhat of an advantage before even having children of my own. More than most parents with kids with Autism would start with, not to mention the resources I had at my fingertips.