A long post about mental illness and disabilities and the media...

I have a funny post in me about this, and it’s coming, but I thought I should write this post first. It’s been ruminating in my mind for a while. I have just been looking for the proper outlet for all the words I have about this.

This one is long. I have a lot to say about a lot of things!

For as educated as I am, and as open and willing to learn as I purport to be, I still allow media to inform me of things I don’t think I “need” to know about.

Many years ago, when my oldest was maybe 2 years old, PBS did a series on Autism. We were living in a remote area in Northern Wisconsin and only had PBS through the antenna at this point (we watched everything else online) and I was only watching it because it was on. The first one I watched was all about Aspergers.

You know how images stick in your mind? The opening scene of that documentary was a boy flying around his yard, “flapping his wings” like an airplane. My son did that. Exactly like that. But he was always a bird. I had always found it a bit odd, but chalked it up to just a kid thing. I perked up, watched intently, and waited on the edge of the bed. Very soon after the opening they went on to highlight more severe, and less “high functioning” cases and symptoms of Aspergers. In a way that was almost a disservice. Very quickly I ruled out my son having this with a resounding “phew, I was a little freaked there for a minute.”

A few months later, my mother came to help when I was due with my second child. To say she was appalled at how my household ran would be an understatement. The one incident that paints the best picture of this is a story I have told often. We had gone on a whirlwind road trip that day (for insane long story reasons that are not exactly on topic for this) and my son had fallen asleep in the car on the way home. I carried him in and laid him down. As soon as he woke up, I put his shoes on him and took him back outside. Why? Because every time we got home he HAD to walk the entire edging of landscaping rocks into the house. Every time he had fallen asleep in the car, when he woke up and realized that he hadn’t “walked the rocks” into the house, he basically had a melt-down/tantrum until I took him outside and let him “walk the rocks” in. It was one of those things that I rarely thought about anymore as it had become second nature. I knew it HAD to be done. If not, there would be literally hours of screaming. By this point in his life, there were many things I did along those lines. My mom was pretty much in shock.

The next time my mom came, two years later, I was pregnant with my third child and the kids’ dad was going to be out of town for a week close to my due date, so she came to help me. She came with what I called “a bag full of Super Nanny.” She was dead set on teaching me how to discipline my children after witnessing my “entire household being ruled by my son.” She had a time out chair, a timer, etc… I had told her that I had absolutely tried the Super Nanny time outs with fidelity, and every other disciplinary method I could find. Nothing worked. This was mid-June of 2009.

Somewhere in March of 2010, my mother had started watching the series Parenthood. She called me and told me that my son had Aspergers after seeing how the character Max behaved. How well do you think I received this information from my mother who was so appalled with my “inability” to parent and discipline? I had seen the PBS show on Aspergers, and no, that wasn’t my son. My son was 4-1/2 at this point. Out of spite, I did not even bother checking out what Aspergers was, and definitely did NOT watch a single episode of that show!

Two years later, a random series of different Facebook posts led me to look up the symptoms of Aspergers. I had just started a full time teaching job where I was teaching a Speech class, and literally days after I was piecing things together about my son having Aspergers a student did her introduction speech about her son with Aspergers. After that, there wasn’t a doubt in my mind. I started reading and researching and my mind started opening. I could feel it. My entire idea of parenting changed and things improved so much between my son and I.

In so many ways, media hindered AND aided my discoveries. I started watching Parenthood, and indeed Max was so very similar to my son. I sought out movies that had more accurate portrayals of people with Aspergers and high functioning Autism. See, before this, I had pretty much one idea that was perpetuated by the stereotypes I had seen in movies. I just hadn’t seen the right movies.

I hate to admit that this is a lesson I have continued to keep learning!

In the years leading up to this year, I have had my oldest two diagnosed with Autism. They are SO VERY DIFFERENT!! My daughter (second child) was first diagnosed with SPD, then ADHD and mood disorder, learning disability, etc… She does have learning disabilities, and probably some ADHD, but Autism is now her primary diagnosis. This took years to get someone to see and understand. Girls are much more likely to go undiagnosed and misdiagnosed. I have known and understood her Autism since about the same time I came to the understanding that my oldest has Autism. While my third child has behavioral issues and sensory issues, he definitely does not have Autism. My youngest is currently somewhat of a puzzle. He’s been officially diagnosed with ADHD, disruptive behavior/tantrum disorder, PTSD, ODD (which I don’t agree with!). I still halfway suspect he may be on the Autism Spectrum, but at this point I’m not overly concerned with a “correct” diagnosis. I’m more concerned about getting him to the point where he can do better with school. This has been my battle since he started kindergarten.

I got to a point this year where I obviously needed help with my youngest and school. I found an IEP advocate (you would think after dealing with IEPs for about six years, I would be able to handle it, but that as well is a long story for another time).

When I was given the name of someone to help me with IEP issues, I visited her groups and pages and looked at all of her internet sources. One of her children has Tourette Syndrome.

Guess where I had learned everything I knew about Tourette Syndrome?

I was about to be shown how mistaken my ideas were again.

Tourette Syndrome is more complex than yelling out swear words. Go figure. I read somewhere (don’t remember now) that only about 10% of those with Tourette’s yell profanities. The following image is from the Tourette Association website (https://tourette.org/):

I’ve learned a lot more about Tourette Syndrome after reading things from my IEP advocate, and attending a “Parent Empowerment Sumit,” and connecting with others who have children with Tourette Syndrome.

Right around the same time I was becoming more aware of the realities of Tourette Syndrome, and not the version I had of it in my head from What About Bob?, I received the Autism diagnosis for my daughter (now 11). Along with her Autism diagnosis, the psychiatrist also diagnosed her with Agoraphobia, Social Phobia, and Generalized Anxiety Disorder.

I did a quadruple take of the diagnosis page.

This kids wants to go places like ALL.THE.TIME!!! She never stops wanting to go to the park, the museum, the bowling alley, shopping, the grocery store, the gas station, her friend’s house, the movies, grandma’s, the beach, Florida, Disney, etc... She gets PISSED if we spend more than a day just staying home!

Agoraphobia and Social Phobia?

And here is where I learned pretty much everything I knew about Agoraphobia:

Sigourney Weaver’s character in Copycat is probably the worst case scenario. As with pretty much every disability and mental illness, there are varying degrees, and no two people will exhibit the same symptoms to the same degree… and while my daughter wants to go places all the time, she knows I will be with her, and once we get there that doesn’t mean she’s happy in the situation (unless it’s a park and she’s got a swing).

When she was a baby and I would take her and her older brother to the store, I would pray the whole way into the store that no one would talk to her. The second anyone looked at her, or god forbid got close and said something to her, the trip was pretty much over. She would be in hysterics. The only way to get through a shopping trip with her as an infant and toddler was to wear her facing inward. Sadly, it took me a while to figure that one out.

Even now, the whole time we are in a store, she is asking or saying things like “Why is that person looking at me? Do you think the people at the store will like my outfit? Why is that person doing that? Why are there so many people here? I don’t like this, there are too many people here…” She quite literally talks and asks questions about people the entire trip through the store or wherever we are if there are a lot of people. I recognize now, she is full of anxiety while out on those trips places. She is only able to keep the panic at bay because I am with her and talking her through it.

Once I started looking at the information on Agoraphobia, Social Phobia, and Anxiety… I realized they are some of the bigger things I struggle with as well. I have all those symptoms too. It took me a long time to come to grips with the fact that I have anxiety. I try to blow it off and blow it under the rug and pretend it doesn’t exist. I think it’s about time that I own it all and start making steps to progress.

While I have mentioned some movies that have presented mental illnesses and disabilities in very stereotypical ways, there are also a lot of really good movies out there that show them in more realistic terms. The reasons why some movies show a more stereotypical or narrow view is because it better serves their purpose. What About Bob? wouldn’t have been nearly as funny without the Tourette’s scenes. Copycat wouldn’t have had the same effect if it were not portraying someone who suffered a very severe case of Agoraphobia. In reality, these are movies, and to a certain extent we expect stereotypes. It is up to the viewer to understand that the stereotypes are not the well rounded reality or complexity of any situation/person/disability/mental illness.

I’m sure I will write about some of the better movies with more accurate and complex portrayals at some point.

Until then, just look forward to my next post, “Panic at the Drive-thru” coming soon!