"I wouldn't wish my brain on anybody"

#AuthenticAwareness includes knowing the struggles inside the mind of an autism self-advocate

The author at one of his speaking engagements.

The author at one of his speaking engagements.

By Russell Lehmann 

As a motivational speaker, author and poet, I travel for work quite frequently. Oftentimes, to get from the airport to my hotel, I will take an Uber or Lyft. Inevitably, the drivers ask what I am in town for, and when I tell them what I do, they subsequently ask me what I speak about. 

I hesitantly say autism and mental health, not because I am embarrassed or ashamed, but because I know what the driver’s response will be: “Oh wow, I would have never guessed YOU have autism! You must be doing very well!” I give a half-smile on the outside, while frustration fills my inside.

Individuals with autism are at a significantly increased rate of having a mental health diagnosis. I have 8 invisible disabilities, and usually, aside from massive public meltdowns that have taken a toll on my well-being, only those closest to me see my struggles. 

The driver taking me to my hotel doesn’t see my meltdowns at home where I shake, rock back and forth, screaming at the top of my lungs while cussing and punching myself in the head. 

My followers online don’t realize the excruciating thoughts that consume my mind, such as suicidal ideations and disturbing intrusive thoughts stemming from my OCD. 

My neighbors aren’t aware that every day is a fight to get out of bed. Sometimes I don’t, and when I do I want to run away from being misunderstood, not fitting in with society and being extremely isolated and lonely. 

Very few know of my past hallucinations, because even though I take pride in being extremely transparent and authentic, there is still too much stigma for me to walk around telling people how terrified I was when I was sobbing on my floor while the devil was yelling at me. 

I can excel at the extraordinary, but I struggle with the simple. Do not for one minute think I have it “made” due to the nature of my career. I have not “outgrown” or “overcome” autism or my challenges. To be honest, I wouldn’t wish my mind on anyone unless they were readily prepared for it. 

Indeed, I have beaten the odds and continue to do so every day due to my tenacity and perseverance, but don’t let that paint a false narrative. I still struggle vehemently, I get severely depressed, I get discouraged with the lack of compassion and understanding and I cry almost every other day. 

This world is too harsh for me. However, my heart and soul drive me to speak up for others who are not heard, because I know how challenging and hurtful it is to go unnoticed. 

Always remember this line I wrote a few months ago, and that I continue to find to be more and more true with each passing day: “What you do not see is much more important than what you do see.”

Learn more about Russell Lehmann at www.TheAutisticPoet.com and on Instagram at @autism_advocate_

My Autistic Daughter Swallowed Ball Point Pens: A Story of Severe Pica

#AuthenticAwareness includes attention to this life-threatening condition, which is common in cases of severe autism

pens rainbow.jpg

By Kelly Olson

My daughter Kayla is about the same age as Greta Thunberg, but the poised and articulate climate activist’s “autism” bears no resemblance to my daughter’s. 

In a split second, Kayla will swallow whole objects intact, like you might see someone do in the circus. A big rock, batteries, chunks of soap, nails, an Allen wrench, baby lizards or bugs, she’ll pick them up and eat them. She used to break glass on purpose so she could eat and swallow the shards. To this day most of our dishes we use daily are made of unbreakable plastic or melamine. 

From an X-ray finding batteries inside Kayla’s abdomen.

From an X-ray finding batteries inside Kayla’s abdomen.

Pica, as this behavior is called, is a common feature in autism. It refers to the ingesting of non-edible objects like dirt, rocks, glass, paper clips, paper, plastic, and/or basically anything else you can imagine. Items may be relatively benign such as grass, leaves, paper, or more harmful such as rocks, household cleaners, etc.

For many, pica can be a horrifically serious compulsion, leading to choking, poisoning, or blockage or perforation along the gastrointestinal tract. Emergency Room visits, X-rays, CT scans, blood draws, frantic calls to Poison Control, and surgeries for repair or object removal are all part of life for families like mine. 

In one particularly tough year, My daughter had so many X-rays and CT scans done in search of swallowed foreign objects, I was surprised she didn’t glow in the dark and seriously worried about the long-term effects of her being exposed to so much radiation at a young age. In addition, I have learned so much from calling poison control, like exactly how many tubes of toothpaste, deodorant, etc. one can eat before it becomes truly dangerous. 

For years, I have lived in a state of intense hyper-vigilance while we’re out and at home. Except for sleeping — which is something she very often doesn’t do — there is no downtime, no respite from pica. Several times a night I am awoken by the door sensor alarm that lets me know she has left her bedroom. It only takes a moment for her to grab something and swallow it. At school she has a 1:1 aide who is always an arm-length away. But the vigilance continues to the other end, too. You don’t want to know how much time I have spent fishing items out of her poop to make sure they’ve passed.

To add an extra scary twist to Kayla’s pica behavior, Kayla has a compulsion to swallow large items whole. She will even pretend to chew her food just to swallow it in large chunks on purpose, as if she seeks some unmet sensory need. Even when eating appropriate food items we have to watch her very closely and make sure her food is cut up in small bite-size pieces and prompt her repeatedly to chew her food during each and every bite with each and every single meal. It is tedious, but necessary.

Unfortunately Kayla seeks out this sensation when engaging in pica. I have witnessed her pick up a large rock that you would think impossible for any human to swallow get tossed in her mouth and disappear as easily as an m&m in an instant. This behavior has always been an issue since she was a toddler. It’s as if she never moved from the toddler stage where they put everything in their mouths, and it just got worse and worse each year. 

Images from the endoscopic removal of the pens.

Images from the endoscopic removal of the pens.

Kayla’s pica was at its worst when she was about eight and nine. Because Kayla likes drawing and I could not let her use crayons or markers (she eats crayons and marker tips) I thought I would get her some colorful gel ink pens. I found a pack of five at a dollar store. There were smaller pens, maybe about four or five inches each, but pens nonetheless. I sat on the chair adjacent to the sofa and placed some paper and the pens on the coffee table in front of her while I checked some emails on my laptop. I must have looked down at my computer for 20 seconds and by the time I looked back up, the pens, all five of them, were gone. 

I asked Kayla, “Where are the pens?” and she indicated to me that she had swallowed them. “There’s no way, that’s not possible,” I thought to myself as I frantically searched under the sofa and flipped over all the cushions. No pens. So I just calmly got her dressed and took her to the emergency room where an X-ray revealed the metallic tips of five ball point pens. We were then transported to Methodist Children's Hospital by ambulance where she had endoscopic surgery to remove them from her stomach. 

Fortunately the surgeon was able to retrieve the tips of the pens with the tool and did not actually have to cut into her abdomen. After the surgery the doctor showed me the image of the pens in her stomach, my jaw dropped. I guess I was still somewhat in disbelief. But seeing is believing. That's why I make a point to show new teachers, camp counselors and other care providers of hers, images of these pens. Because I think when I say “pica” people think maybe she chews on a piece of paper now and then or eats dirt or grass or leave — not things that require emergency room visits. I need them to wrap their heads around the danger my daughter faces each day. This is life-threatening behavior.

“Kayla is like Houdini, able to get her way into anything, so as you can imagine, everything is locked up at our house. We have locks and or alarms on doors, cabinets and the refrigerator.”

I sought help everywhere, but no one in Texas was willing or able treat her. So about six years ago I admitted her to the Neurobehavioral Unit at Kennedy Krieger in Baltimore for several months. As a single mom, I was desperate and exhausted and totally out of options. A combination of behavioral treatments and medications has helped reduce the pica, but I remain in a state of constant vigilance, and a weariness compounded by Kayla’s hyper-energetic inability to sleep. Kayla made excellent progress during and after her inpatient stay in Baltimore. Her pica behavior decreased dramatically. However we are not 100% out of the woods. It is an ongoing work in progress but I hope as she matures and we continue our best efforts to provide the appropriate behavioral support we can eventually eliminate this behavior.

Despite her progress, we still have to take precautions to keep her safe. Kayla is like Houdini, able to get her way into anything, so as you can imagine, everything is locked up at our house. We have locks and or alarms on doors, cabinets and the refrigerator. I’ve had alarms, home camera systems. In the bathroom I couldn’t  leave anything out, even toilet paper, shampoo, soap, or deodorant, because she would ingest them. 

The situation has since improved somewhat, I can now leave certain things out I know she has no taste for, but basically the bathroom is literally empty except for towels and toilet paper. I even have to cut out the magnets from the shower curtains liners as she will remove them and swallow them. She even figured out how to pick locks on my bedroom door in order to seek out all the aforementioned toiletries I have stored. 

You cannot sweep from your mind the thought that this is how my kid is going to die — she’ll choke or get poisoned. There is no replacement behavior, she seeks the sensation of a whole object going down her esophagus.

“While the world celebrates the Gretas of the world, it turns its eyes away from the Kaylas. But there is a generation of young people like my daughter who desperately need help and need the world to know their stories, too.”

After I remarried last June, we moved into our new house and the enormous added costs of living with severe autism once again hit me. To cite just one of many examples, we had to pay $1,000 to have an highly toxic oleander tree removed from the backyard for fear Kayla would ingest its potentially deadly flowers. Also, the renewed sense of missing ordinary, normal things, like wondering if I’d ever be able to buy a regular wine glass.

But mostly I know this autism behavior, like her eloping, could kill her. While the world celebrates the Gretas of the world, it turns its eyes away from the Kaylas. But there is a generation of young people like my daughter who desperately need help and need the world to know their stories, too. 

I will never give up on my daughter, and will try every tool I can to keep her from swallowing things that aren’t food, but I am also consumed by fear. I’m not going to be around forever, and no one else will be her helicopter mom. Our vulnerable, disabled autistic kids, they deserve the cover of Time magazine, too.

Kelly Olson is the pseudonym of an autism mom who lives in Texas. Kayla is a pseudonym for her daughter.

Homeschooling, with Autism

While certainly not for everybody, some autism parents choose to homeschool. One mom explains why she does it.

The author’s sons Aidan and Josiah (Jojo) marking the first year of “Straight Outta Bed Homeschool.”

The author’s sons Aidan and Josiah (Jojo) marking the first year of “Straight Outta Bed Homeschool.”

By Tiffany Hammond

If you follow me, you already know of our decision to homeschool our littles. If you don’t already follow me, what are you doing with your life? Get on that. Like now. I mean, right after you finish reading this post. 

Back to why you’re here. 

I always knew that homeschool was going to be where I eventually landed. I have two boys with autism, one who is speaking and one who is not, and as they have grown older, and as I became more involved with advocacy, my frustration with the public school system only magnified. The plan was to finish my Master’s and then start homeschooling the following school year. Well, degree accomplished (yay me!), so now it’s time to take on homeschooling. 

I was worried about our small living space, but we make this little homeschool area work for us.

I was worried about our small living space, but we make this little homeschool area work for us.

There was a lot that went on into our decision, but what mostly held me back from doing so was doubting my abilities as an educator. I simply didn’t think I was qualified enough to prepare my children for their future and adulthood. But I realized that the progress they have made was because I was the one teaching them “behind the scenes,” before and after school, and between therapy sessions. 

I was the one who was attending every Autism and Special Needs seminar and conference, reading every book, and who conversed with every “professional,” trying to learn all I could to help my boys. I was far more qualified than I had given myself credit for, and chances are, so are you. 

But let’s get into the specifics… here are seven reasons why I have become the boss of Straight Outta Bed Homeschool:

1. Flexibility

You are free to homeschool when you want, for however long you want, and teach how you want. This is important for our children who often have periods of the day when they are the most engaged. Typical school is often overwhelming for our children with the long hours and constantly being forced to engage in a manner that isn’t comfortable to them. And then they come home and “explode.” It’s because they’ve spent the entire day keeping their true selves bottled up that when they come home, they unload it all as home is their safe space and you are their person. You understand them and you’ll know what to do. 

You’re able to assess where your child is and their engagement level and determine if only a few hours a day are necessary. And most often it is. Your child doesn’t need 8 hours of instruction, they’ll often become bored or disengaged or overwhelmed, hell, you too. A few hours of meaningful instruction per day that caters to your child’s specific needs will be enough. 

Right now I teach four days per week and our Fridays are off-days or days I’ve reserved for field trips. Oh, that’s another thing, you can field trip whenever and wherever. Awesome, right? 

2. You’re the boss. Literally. You are the District, School Board, etc

You are in charge of their curriculum. The homeschool laws vary from state to state but from what I gather, parents are still feel to choose whatever curriculum they want, even creating their own. Here, in Texas, we simply have to teach five subjects the state deemed necessary, have a curriculum, and use the proper materials. Basically, there needs to be some sort of plan we’re following, have some actual materials they would use for learning, and make sure we at least taught the subjects they want us to teach. Your state might be a little different. Be sure to check with your state’s homeschool laws. 

There are so many different curriculums out there, it’s overwhelming. Many cost money, some are free. You can find some at bookstores, online, and curriculum swaps/sales at local co-ops. I have even found some good workbooks at Wal-Mart or Dollar Tree. Because of our boys’ needs, and this being our first year, I have mixed and matched different curriculums and material. I’ve taken Easy Peasy (a free online curriculum), used it as a foundation, so I can get an idea of what a year of planning looks like and I then expanded upon it, changed some things, bringing in different resources, materials, and other things to learn.

3. As the Boss, you choose how and what they learn 

Being in charge of what they learn and how they learn it is incredibly important. We know our kids, and we know what they need. With the schools, they focus primarily on the academics; as they should, given they are a school. But where they fail our children is that oftentimes our children need more functional learning than academic. 

Our family is choosing to place a lot of emphasis on life skills for our boys, integrating their mandatory subjects in with meaningful skills they would need in the future for independent living. For example, in Texas there is a math requirement. One son has a firm grasp on math skills and the other has no real concept of math (yet). Both struggle in many areas that prevent living on their own one day. My youngest who understands math also learns couponing, how to shop, creating a budget, etc. These are life skills, and it’s also math. My oldest who doesn’t really understand math is a little more difficult. He is learning to clip coupons and use scissors, but we have that falling under ‘Art,’ it’s a life skill, but simply clipping them isn’t math. Right now, with him we are working on recognizing numbers. 

For our kids it’s important they learn academic subjects but it’s equally, if not more, important they learn functional life skills. Homeschooling provides the opportunity to focus on these. 

4. Community learning

I touched on this earlier with the field trips, but if your children are anything like mine, and they are if they have an Autism diagnosis, they struggle with social interaction and/or being in public. With homeschooling you can create opportunities for your child to be in the community learning how to interact with the world. There’s not much of that in the public school, even in special education. If anything, the school liked to hide my children or keep them away from the others. I am now able to go to the zoo, museum, restaurants, etc. during school/work hours and while these places are not entirely dead zones, there’s FAR less people there than would be if we went on a weekend or after school or during holiday breaks. This allows my children to get out in the community and build up their tolerance. I have my speaking son say “hello” to at least 3 people there and my nonspeaking one I’ll have him do the same with his device. 

Jojo at one of his co-ops where he is helping to build a fence for the garden.

Jojo at one of his co-ops where he is helping to build a fence for the garden.

There are homeschool co-ops, which are communities of other homeschooling families that get together to teach each other’s children, play with one another, go on field trips, and more. These have been amazing for us. There are several co-op groups where i live and we take advantage of each. The classes they have are smaller than those in the school setting and the teaching is individualized. My boys thrive in these environments. Our children with Autism need to learn the skills necessary to interact with the world, school just overwhelmed my kids. With homeschool I’m able to control their exposure, basing it off their needs, strengths, and weaknesses. 

5. Everything can be a teachable moment

I have found myself using any and everything around me to teach my boys something. I like to think i did that before i started homeschool, and I probably did but now I’m on overdrive. I guess because I’m doing the teaching, I’m inspired by our environment. Their chores are now more than chores, they are life skills. I treat them as such because they’ll need them to be more independent in the future. Sorting laundry isn’t just because you need clean clothes, it’s recognizing colors, it’s measuring detergent (math), following directions, time management when you start a load and go work on something else… everything we do at home is purposeful. It has to mean something for their future or we don’t do it. 

6. No standardized testing

At least not for those in Texas homeschools. Check your state’s laws. 

“For our kids, every single thing they learn needs to matter, it needs to have a purpose. Their lives depend on it.”

I loathe state assessments. Teachers are teaching to a test. My kids’ public school would spend roughly two months going over material to pass a state test. They weren’t learning anything else. They we’re doing times tables…in Science class. My boys were taking adaptive tests for the state. They too, were learning things they didn’t need to be learning, all for a test. For our kids, every single thing they learn needs to matter, it needs to have a purpose. Their lives depend on it. Literally. It takes more effort on our part to prepare our children for a world without their parents or guardians. Schools consistently drop the ball here. 

7. Freedom

It’s true freedom when you homeschool. Most of the reasons I mentioned all highlight the most important aspect of homeschool, freedom. You aren’t bound by the system to teach your child material they don’t need nor understand (yet). You can go as fast or as slow as you want. You can do one subject per day, per week. If you want to only teach three days a week, go for it. If you want to take a trip to an Amazon Fulfillment Center (which is definitely a thing, check that out), on a Tuesday, go ahead. 

The freedom to teach a few hours a day or a few days a week has its benefits for therapy purposes as well. I don’t know about you, but in my experience most of the therapy times tend to be booked up around the late afternoon/after school hours. With homeschool, you get your pick of any slot during the day, your schedule is that free.

Homeschool is freedom. Pure and simple. You are in full control of what your child learns, how your child learns it, and how they are to be assessed on their retention of the material. 

Aidan enjoying some early morning sun helping out at the co-op.

Aidan enjoying some early morning sun helping out at the co-op.

And there you have it… my reasons for homeschooling my littles with autism.  I have received so many messages about why I have chosen to do so, what made me make the decision, etc. so I felt I needed to let you have a comprehensive list of “why.”  I will soon blog about “how” I’m actually doing it. That one will be a bit more challenging to write as I’m still trying to find my footing with scheduling, curriculum, therapy, life skills, appointments, etc. But that will be a much needed post. The HOW is just as important as the WHY.  Especially when you factor in the costs associated with homeschooling (it isn’t totally free) and that many of our Autism families are one-income, adding an additional challenge. Also, so many of the parents in this community are single, and that will make homeschooling exceptionally challenging. 

There is also the big question of stress. Many parents understandably need the daily break that school provides, or need it because they work, or need the help of professionals who may be better equipped to teach behavior management, life skills, communication, or other things we often find overwhelming. I understand that. I’ve been there. But some school districts can provide part-time staff to help, and speech, occupational and other therapists, and some financial support so that it’s not totally on you all the time. It’s easy to burn out, but some of our kids can do this, and it may be worth considering if it might work for you.

XOXO

Tiffy

Tiffany Hammond is the mother of two sons with autism. She describes herself as “that Autism mom who is always laughing. Always smiling. Always happy. I’m always helping others and I always have an answer. Or at least that’s how it seems on the surface.” She and her family live in Texas. Find Tiffany: Facebook & Instagram.