A Blessing and a Curse

Twenty plus years ago I began my quest to learn everything I could about each diagnosis Travis received as they came along. ADHD. Bipolar. Anxiety. Depression. Autism. The list actually goes on. Gradually I came around to not caring what the label was, I just wanted to know Travis better. What made him tick. Travis was so angry. So sad. So impulsive. I wanted to help him to feel better. Be better.

Back then I bought books that I happened upon or that were recommended to me by someone I knew. Sometimes I happened upon an article in a magazine. I attended conferences and listened to the renowned speaker at the time. I attended support groups.

I have an entire four drawer file cabinet of records. Torn out magazine articles. Hand-outs from the conferences. IEPs from every year. Evaluations. Test scores. It will not be long before I need another file cabinet.

The more current files consist of Medicaid statements, SSI representative payee paperwork, legal guardian court reports, health information, BiPap machine supply documents, Division of Vocational Rehabilitation documents, service provider agencies paperwork….

I have been a strong advocate for Travis over these twenty plus years. I made decisions based on the information available at the time. In the beginning I trusted doctors. Until I didn’t. I began to question doctors. Which, by the way, they do not appreciate.

In the beginning I trusted the school staff. Twenty years ago, we used the term special needs. I trusted the Special Needs Director at our local public school. Until I didn’t. I think the position is now called Director of Integrated Services. Schools are doing a much better job today of being inclusive and teaching individuals with intellectual/developmental disabilities. Even though I believe other districts were doing a much better job even back then than the district Travis attended.

There is so much more information available today on Travis’s diagnoses than there was twenty years ago. The information is also so much easier to come by. It seems like every day I come across an article about autism, intellectual disabilities or mental health issues online. I also learn quite a bit on social media sites.

I belong to a few different Facebook groups for parents of children with autism or other disabilities. Parents of children with disabilities share the best information and offer the best support.

Just today a member in one of the local groups shared information about a parent support session called, Practical Support for Parent and Child Wellness: Survival Strategies for Raising a Child with a Disability. This is presented by Foothills Gateway. Foothills Gateway is the community center board where Travis is a client. Interestingly enough, I didn’t learn this from Foothills Gateway. I found out about it from a parent group.

The first session of six is titled, “The Importance of De-Stressing and How to Start”. Emily Daniels, LCSW, is a licensed clinical social worker and psychotherapist who works to support families who have children with disabilities. Emily will discuss the importance of how stress reduction can improve parenting. Along with evidence-based research, she will provide realistic, tangible strategies for parents to reduce chronic stress and build the resilience to problem solve challenges that come with raising a child with complex needs.

This series will be available by Zoom. I wish that I would have had access to this kind of help years ago. This is an example of how I consider the technology of today and social media a blessing. I wouldn’t have known about this series if another mom hadn’t posted it on social media. I can participate from the comfort of my own home rather than drive into town on a cold Colorado night to attend a meeting at 7pm. I am going to check my calendar. Even though I wish I had access to this type of support years ago, I can still use it today.

Parents in these social media groups share all types of information from the best doctors and therapists, the best schools to attend, camps and resources. Parents ask for advice on how to handle certain behaviors or situations. Sometimes parents just need to vent.

Another recent post shared that a woman named Wendi Elliott with “Little Paws of the Prairie” (licensed small-scale breeder), was taking nominations for special needs families in need of a service dog. She gifts an AussieDoodle from her program to a child in need. Her dogs are great candidates for a service dog. How awesome is that?

Sometimes an article I come upon online makes me feel guilty about decisions we made, even though I know with all my heart that we made the best decisions we could with the information available to us at the time. One such article is titled, “Are We Giving Autistic Children PTSD From School?”

When we don't understand autistic kids we create a toxic environment for them.

This article was written by Marcia Eckerd Ph.D., and published in Psychology Today on August 31, 2021.

Per Eckerd, “For most autistic children, school can be a toxic environment. Working on the advice of experts, school staff aim to have autistic children’s behavior conform to neurotypical expectations. The more a child is indistinguishable from mainstream peers, the more successful the school intervention is believed to be.

Disruptive or atypical behavior is labeled oppositional, avoidant, attention-seeking, rude, or simply inappropriate. Children who don’t “cooperate” (meaning engage in and respond to school-led, behavioral interventions) are often called non-compliant. The issue is seen to be the child, not the intervention itself. Autistic children are often taught that what they feel, think, or do is wrong and they should do what they are told instead. This can have a life-long impact on self-esteem, self-confidence, and self-advocacy. Quoting a student on a Stanford University panel, “It kills my soul.”

Many interventions treat behavior perceived from the outside, without understanding the meaning or necessity for the child. The behavior is the tip of an iceberg that goes down to sensory, social, emotional, motoric, and cognitive issues the child experiences. A child who is “acting out” may be responding to internal frustration, overstimulation, anxiety, or some other distress. Plans often focus on eliminating the “acting out” behavior instead of recognizing distress. We need to support children, not single-mindedly focus on correcting behavior.

As an example, sometimes autistic children refuse to do work even if they successfully completed a similar assignment before. We assume this issue is attitude and motivation, but attitude and motivation can be very different for children on the spectrum than it is for neurotypical children. Autistic children’s productivity is variable. If children are tired, hungry, not feeling well, or had a problem earlier in the day, they might not be able to access the skills necessary to do an assignment. In a worst-case scenario, this can become a traumatic experience.

This is a slightly altered transcript of an interview with a British autistic adult recalling life in primary school:

I would say, 'I cannot do this. I can't do it.' They put a math worksheet in front of me and said, here, do this. It's like, I can't do it. They try and make me do it, like, just get it over with.

It’s not that I'm being lazy or objectionable. It's not that I don't want to do it. It's that I... I just didn't feel able to do it. Them trying to force the issue would then mean that I got more and more upset and annoyed and angry. At that age, around six or seven, I really didn't express myself well.

I'd just be like, 'No. Piss off, I can't do it!' And then I would get violent. I just struggled and I didn't feel that they were listening to me. I would start throwing things, flip tables over and then the teachers would drag me to my seat.

I would lash out at them and they'd physically restrain me. That was the worst time of my life, when I was in primary school.

It’s likely that if the teacher had allowed the child to do something else or take a break, none of this trauma would have happened. There can be the same failure of understanding in responding to children with sensory or social overload.

The story below is excerpted from a story by Lisa Morgan, an autistic advocate. An autistic student arrived at class finding the desks rearranged.

Standing in the doorway, I tune into the sounds of students talking at different speeds, at different decibels, changing topics with a squeal or two thrown in along with an argument here and there. It’s so hard to think. I panic. There are at least 22 desk chairs squeaking on the floor, pencils being sharpened, the teacher giving directions, students finding new seats. I focus on a spot on the floor, completely overwhelmed. I’m rooted by panic from the change, the noise, and the confusion about where to sit. I can’t find words to explain.

The teacher tells me she wants me to move. Will she touch me? I don’t want to be touched. The teacher warns me again to get ready. I need to move. The teacher’s voice is rising. She sounds angry. Is it me? I’m trying so hard. I move towards a desk, heart pounding, a strong perfume smell making it hard to breathe, a student bumps into me and I stop. My panic rises again. I finally find a desk with my name on it. My head hurts from the smells; I’m overstimulated and overwhelmed, so I sit and rock back and forth to calm myself. The teacher walks over and says, "See how easy that was? Now sit up straight and stop rocking.”

These examples are in the classroom, a relatively “safe,” structured, supervised space. The “no man’s land” of the hallway, recess yard, or cafeteria can be even more problematic.

What can be done? This is taken from a viral Facebook post by a teacher named Karen Blacher in October 2020:

All of my students are neurotypical, but my classroom looks very much like a special education classroom. I teach mindfulness and emotional literacy. I have a calm corner and use it to teach self-regulation. I provide fidgets and sensory toys. My students are thriving. And that made me realize something.

When we treat autistic children the way the world tells us to treat neurotypical children, they suffer. But I have never encountered a child of any age or neurotype who doesn’t thrive when treated like an autistic person should be treated, with open communication, adaptive expectations, and respect for self-advocacy and self-regulation. Maybe neurodiverse people aren’t the only ones who’ve been misunderstood and mistreated all this time. They're just the ones who feel it most.

Accommodations and change are possible and aren’t necessarily expensive. It’s possible to create a sensory or adaptive profile predicting problems and strategies for success. What’s necessary is open-mindedness and willingness to adopt systemic change. The most important thing is to recognize that teaching neurodivergent children in the same manner with which we teach neurotypical children is a recipe for failure, both for the school, and especially for the student.”

When I come across an article like this one, it breaks my heart. The examples given of the children’s experiences are exactly what Travis endured and how he behaved. Travis says similar things to the student that said, “It kills my soul”. He also describes his school years as the worst time of his life.

If I knew then what I know now, I would have taken Travis out of school altogether. At the time I didn’t believe that I was capable of home schooling him. I thought that the special education teachers had more knowledge and experience when it came to teaching. In the end he learned very little at school. He spent all of his energy just trying to get through the day. Just trying to cope.

Travis is pretty angry at me for the decisions we made around school. And the decisions we made around medications. Maybe he has the right to be. As parents we don’t get a manual on how to parent. It’s clear that he expected me to know more. Be better.

I like that new articles and research are so readily available. At the same time, I feel bombarded by the constant information.

Technology and social media can also be a curse. One parenting decision we made that I wish I could redo is allowing Travis to become addicted to video gaming. At the time I thought I was doing a good thing. Travis didn’t have many friends. With online gaming he met and played with others from all around the world. Video gaming is the only thing that he can focus on. And enjoy. Video gaming allowed me time to make dinner.

The problem is that Travis is not the only person with poor social skills playing online video games. I hear him and the other players in the game yelling at each other. Calling each other nasty names. They call Microsoft to report each other for being unsportsmanlike.

Social media gives Travis an outlet to talk to people. Unfortunately, some people on social media are unkind. To Travis. Including Travis. When someone says something unkind, he lashes out.

For some reason that is unknown to me, some people feel that it’s okay to be mean on social media. I often wonder if they were sitting in person with the same group, would they say the things out loud that they are typing onto the computer?

Lately Travis has been spending one or two nights per week at our house to decompress. He gets overwhelmed with the constant needs of people in his life. Their individual needs to them don’t seem like a lot. But when you take all the individual needs of all the different individuals in his life it all adds up to him constantly helping someone. He gets confused about when he said he would help who. He forgets he has other commitments. He gets tired and wants to relax. Even though people who are close to him know that he has a disability and has memory issues, they get angry at him. Say mean things.

Travis ends up here. He needs quiet time. He needs to catch up on sleep. He gets calls requesting a ride. I tell him he should just turn his phone off for a while. But his phone is his lifeline. Before you know it, someone is angry that he is not available. Or one of his friends said something mean on social media. They all have to have the last word. Or the last text. Someone blocked someone. Someone reported someone. Travis is getting worked up.

The chaos of his world is invading my sanctuary. My peace. My downtime, which I desperately need as part of taking care of myself. So that I am better able to take care of his needs. Round and round we go.

Technology. Social media. A blessing and a curse.

“Blessing or curse? Well, it purely depends on us.” - Naushaba

“Well, what is a blessing but a curse from another point of view.” - Lois McMaster Butold