This is not my usual blog about Boo Bear, but a blog about being a PCA and getting paid a decent wage. The two things are not always compatible. Every May I sit down with my financial advisor and she helps me work out a budget for the year. Every year I tell her the most important thing is making sure that my employees get paid a decent wage. This year, all of them will be receiving at least $17 an hour. Because I get less than 30 hours a week from the state, and I have several PCAs, no one is working full time. Most of my PCAs pick up 2 to 4 shifts a week and are happy for the extra spending money. Boo is happy to hang out with them. It is a win- win situation.
Our beloved PCA, A, just graduated from college. She has made it clear that she wants to continue working with Boo in the evenings and is hoping to find a full time day job. One of the places that she interviewed was ARC homes, group homes for adults with developmental disabilities. She picked this place to interview because she wanted to make a positive difference in the lives of others. To say she came away from the interview underwhelmed and disgusted would be an understatement. ARC wanted to hire her immediately, but their wage offer was pathetic. For the first 60 hours of hire, an employee of ARC homes earns $9.86 an hour. After that, their pay goes up to $11 an hour. Workers who take a weekend shift make $12.81 an hour. Those who work nights but get to sleep earn $9.86 an hour. Those who work nights and stay awake make $15 an hour. There is no way someone could work 40 hours and week and survive on these wages. Even more horrifying is the fact that ARC homes hires staff as young as 16 years old. My son, and the members of that group home, have complex medical needs. I cannot fathom leaving his care to someone who just barely got their drivers license. Those who live in these homes are the most vulnerable members of society, yet we as a society are only willing to pay their care takers a pittance of a wage. While ZipRecruiter sees hourly wages for PCAs as high as $18.03, and as low as $7.45, the majority of PCA wages currently range between $10 (25th percentile) to $13 (75th percentile) across the United States.
I had these numbers running through my head as I walked into Target today. They had signs up advertising that they were hiring, starting at $13 an hour. Last year Target made the news for bumping their minimum pay up to $12 an hour and said their goal was to pay $15 an hour by the year 2020. Interestingly, with this increase in wages, they found as a company that morale went up and staff turnover went down. What a novel concept! Treat your employees well, pay them a decent wage and give them opportunities for advancement. I will note that ARC claims they have opportunities to advance, but few people do. No one can work that long on such low wages and survive. Therefore, group homes like ARC are chronically understaffed and the turnover rate is sky high. It is a recipe for instant burnout.
If this sounds bad enough, the story takes an even more sinister tone. I interviewed a PCA who asked to remain anonymous. She was working for a family of a high needs child for $10 an hour while going to college full time. Though she was working almost every hour she was not in school, she could not make ends meet. She could not find anyone to co-sign her student loan so she was forced to go into prostitution to make ends meet. I can’t decide which is more tragic, that PCAs are so grossly underpaid, or that colleges can charge such exorbitant rates that their students have to sell their bodies (or their plasma) in order to make enough money for tuition. Truly, this game is rigged in favor of the wealthy. No one should have to sell their body to make money for tuition, and no one should put their health and safety on the line working with a high needs client for $10 an hour. The entire scenario is heartbreaking.
So, what is a parent to do? Choose the company that does your payroll with care. If they refuse to pay PCAs more than $13 an hour, find a different company. Write to your representatives in Congress. Write multiple letters. Tell them that the wages of PCAs need to be lifted and the cost of a 4 year degree must be slashed. As for my PCAs, I shall pick them with care, pay them a socially just wage and make them a part of my family for as long as they wish to take good care of my son. I refuse to put my son into an environment where substandard care is the norm. He can live with me and his dad for as long as he wishes. If he ever does wish to move out, I will follow the example of his cousin Janet who bought an apartment for her special needs daughter and her best friend and has it staffed around the clock by competent caregivers. I refuse to settle for second best for my son. If you like this story and want to add momentum to this movement of social justice, please retweet, like and share, or better yet, do all of the above and write your representatives in congress. In the meantime, to quote A, ” Be good humans.” Everyone has some sort of battle they are waging. Be kind to others who are in the thick of the fight. It is a perilous road out there, we have to stick together.
As I have said before, it is a common misconception that Autism is a childhood disorder. But, if you are born with autism, is it here to stay. One may learn to “mask”, for better or worse, and blend in, but one will always be autistic. There is no cure. This is probably not what a lot of parents of newly diagnosed children want to hear. They want a cure and they want it now! So, let’s look at some of the very positive sides of autism, and why hiring someone on the spectrum can be a great addition to your team.
- Attention to detail. People on the spectrum are thorough in their work and very accurate. They can see the tiny details that others on the team may miss.
- Deep Focus. When I am into a project that interests me, their is no stopping me. My husband says I become “monomaniacal”. My abilities to focus and concentrate deeply are intense. When I am really into a project I am unable to be distracted from it. Literally, a bomb could go off in the next room and I would hardly flinch.
- Observational Skills. Autistic children and adults do best with a listen, look, learn approach. Let them explore with all of their senses and then turn them loose. They are never happier then when they are observing and digging up new and interesting facts.
- The ability to retain and absorb facts. Most persons on the spectrum have excellent long term memories and superior recall. Small children may recount for you, verbatim, an event that happened five years ago. This will stand them in good stead when they enter the work force, as they rarely miss a trick.
- Visual Skills. Autistics are fantastic at visual learning and, once again, have great recall. They are incredibly detail focused. This ties back into my earlier point about attention to detail. This is the kind of computer programmer you want analyzing your code for bugs.
- Experts in their area. Autistics have incredible in-depth knowledge of the things that interest them. They also have a high level of skills in this area. Sometimes these things are just for fun, such as when I became fascinated with the six wives of Henry the 8th, as a child. I could talk for hours about the Tudor family. Did this do me much good in the working world? No, but I learned to turn my laser sharp focus on to the things I needed to be successful in my career.
- Methodical Approach. Autistics are often very analytical and excellent at spotting patterns and repetitions. This is useful for computer programmers, musicians, and mathematicians.
- Novel Approaches. Autistics have unique thought processes. They see the world through a different lens. Think of Temple Grandin pretending she was a cow and looking through the eyes of a cow in her job dealing with the meat packing industry. She looked a the world the way a cow would and thus revolutionized humane animal treatment. Her ideas were innovative and they worked. She, like many others on the spectrum knows how to think outside the box. Come to think of it, I am not certain that autistics know how think wiithin the box! It may be startling to a boss to see their employee take what seems a totally random approach to a problem, but wait and see what the solution is. It may be something ground breaking.
- Creativity. Autistics have vivid imaginations and unique ways of expressing their ideas. Once, again, I refer you to Temple Grandin thinking as a cow.
- Tenacity and Resilience. I often imagine myself as a bull dog when I get into a project. I latch onto an idea and work it out, often with a lot of blood, sweat and tears, until I get to a good solution. As Robert says, I am monomaniacal. The part of this trait that may be startling to bosses it their employee may challenge long standing opinions or beliefs. It is the job of the person on the spectrum to learn enough tact to present a new idea with diplomacy, rather than telling his/her boss that the way the company has been doing things for the last 10 years is stupid!
- Accepting of differences. Autistics are much less likely to judge others. By and large, we do not judge others, we just want to keep our heads down and do our work. On the other hand, this does not mean that we won’t question norms!
- Integrity. If you hire a person on the spectrum, they will give you their all. They are honest, loyal and will be a committed part of you team.
This blog came to me in the middle of the night during a violent thunderstorm. I had one dog under the bed, whimpering, and another tucked under my arm, shaking. Obviously, sleep was not going to happen. So, I started thinking about all the positive things that can come to an employer if they would take chance on that interviewee who seems to march to the beat of the their own calliope. They may not have had the most polished interview, but why don’t you give them a task to do and watch them go to work? I promise you, you will not be disappointed.
Last weekend was the area track meet for Team Magic, Boo Bear’s Special Olympics team. Despite a brief rainfall which disgusted all the athletes, we had a bright, sunny day to enjoy ourselves on the track. Boo Bear competed in three different walking events, the 25 meter walk, the 100 meter walk, and the 400 meter walk. He came in second, third, and first place respectively. The ribbons and the fuss over him were not what made me so happy about our day on the track. Unlike last year, Boo really seemed to enjoy himself. He was not nearly as anxious or overwhelmed by the crowds and the noise. He seemed delighted just to have a day to hang out with his mom and A. He also did a good job staying in his lane, which was a bit of a challenge last year. We are looking forward to our state meet which is the third weekend of June. Boo will celebrate his 17th birthday by being an Olympian.
On another note, Boo Bear is now 14 weeks seizure free. I hope I am not jinxing anything but putting this in black and white, but it is definitely cause for celebration. Autism does not scare me, but epilepsy certainly does!
If anyone local has some spare time the third weekend in June ,please come down to the University of St. Thomas where the state meet is being held. There will be runners on the track, swimmers in the pool, basketball players on the courts and gymnasts in the gym. These athletes work their hearts out for a smile and a high five. Please come cheer them on. See you at the track!
It’s been a pretty quiet few weeks for Mr. Boo. He had a great time at the Autism Amped conference and hung out with a bunch of his sorority sisters. His sibling and her friends ran rampant with the sensory activities and had a great time. Mostly these days, though, he is focused on growing. I put him to bed at night and swear that he grew 3 inches over night. A and I measured him yesterday. Though he was a bit wiggly, we are sure that he is at least 5 foot 8. In short, he towers over me and now comes up to Robert’s nose. His feet grew two whole sizes in less than one month.
So, what does this mean? It means he is spending a lot of time sleeping and eating. Growing this fast is hard work. He sleeps hard at night and it is difficult to get him up for his beloved bus in the morning. We are both looking forward to summer break so I can just let him sleep in. When he is not sleeping he is raiding the refrigerator. Cheese seems to be his favorite good at the moment and he eats it by the fistful. When he is not eating and sleeping he enjoys going to school, track practice, going on adventures with his PCAs, and generally hanging out. His area track meet for Special Olympics is this Sunday. He is competing in the 25 meter, 100 meter and 400 meter walk. We are still working on keeping him in his own lane, as he tends to wander. He, A, and I have a hot date on Thursday at the local track where we will just work on staying in one lane. More updates after the meet. Stay ausome!
I am the first to admit that I am a luddite and was very late in appearing on the Twitter scene. Once I arrived I discovered it was a treasure trove of bits of wisdom from people on the spectrum. What a find! I found things that made me laugh, made me cry, and just made me shake my head. In no particular order, here are some of the gems I uncovered. I cannot give credit where credit is due, but thank you to all you wonderful autistic folks on Twitter.
10 Things Autism Is Not:
- Autism is not being socially awkward.
- Autism is not avoiding eye contact.
- Autism is not lacking empathy.
- Autistic people do not lack imagination.
- Autism is not black and white thinking.
- Autism is not a learning disability.
- Autistic people are incapable of lying.
- Autistic people are not polite.
- Autistic people are good at math.
- Autistic people do not grow up.
Another point I would like to add is that having a child on the spectrum is not a sure fire way to ruin your marriage. Autism Speaks floated this idea years ago as a scare tactic. They claimed, with no facts to back it up, that 80 % of couples who had a child on the spectrum would divorce. There is no basis for this claim. Autism Speaks just likes to scare people into thinking that they are the only savior of Autism and salvation only comes via a cure. I assure you that most autistic adults do not want to be neurotypical or “cured”, and the divorce rate among married couples with an autistic child is about 50 %, much as it is in the rest of the U. S. population.
I want to talk a little bit about masking. Masking is when autistic folk pretend to be neurotypical. It is hard work and comes at great cost, but most of us feel compelled to do it, just to be accepted by the rest of the world. I found this marvelous quote on masking. Sadly, it was anonymous, so I cannot give proper credit. “Masking is pretending to be neurotypical. We all do it, spectrum or not. It’s how we fit in, assimilate. We act differently at work, at home, with friends, spouse, lover, etc. Folks on the spectrum wear the mask like armor, so you won’t be scared of us. You don’t know I am autistic, so you expect more of me. But, I see your sideline glances, hear your Rain Man jokes. But, even though I try really hard to be like you and blend in, there are somethings I cannot do.” The author continues in this vein for a while and then closes with a powerful statement. ” Sometimes, though I push myself so hard that I get to a point where I can’t mask any longer, and I am not home yet so you will see: My behavior will change. You may think I am clumsy or rude, aggressive, awkward or weird. In a child this looks like a tantrum. In an adult it looks like a sudden shutdown without a reason. Later, after this, I feel angry because I chose to do what you wanted of me over my own self care. There is nothing wrong with me, nor any real reason I should change myself to conform with your standards of normality. It’s a burden I carry for you and I wish I wouldn’t do it.”
Okay, so masking it hard. Sometimes, being on the spectrum is hard. So, what are the positives? Glad you asked! Presenting, Autism: the positives.
Attention to detail: Thoroughness, accuracy.
Deep Focus: Concentrations, freedom from distractions.
Observational Skills: Listen, look, learn approach. Fact finding.
Absorb or retain facts: Excellent long term memory. Superior recall.
Visual Skills: Visual learning and recall. Detail focused.
Expert: In depth knowledge, High level of skills.
Methodical Approach: Analytical, spotting patterns and repetitions.
Novel Approaches: Unique thought process. Innovative solutions.
Creativity: Distinct imagination. Expression of ideas.
Tenacity and Resilience: Determination. Challenge opinions.
Accepting of Differences: Less likely to judge others. May question norms.
Integrity: Honesty. Loyalty, Commitment.
I will close with one last quote that I am extremely fond of, and it involves cupcakes!
“Imagine is Autism was described like types of cupcake. You have some with icing, some with sprinkles, some chocolate, some vanilla, but they are all cupcakes. ‘But how cupcake is it?’ ‘What?’ ‘Like, is it a little bit cupcake or severely cupcake?’ ‘It…it doesn’t work like that.”
Autism is like cupcakes. You are either autistic or you are not autistic. You can’t be just a little or a lot autistic. Autism is your neurology. You may have greater or lesser needs for support, but at the end of the day you are still autistic. But, that is a rant for another day. Closing in the words of my dear friend, Alissa, “Be good humans.”