A long, long time ago, my father invented the Internet. As in, he worked for network solutions and laid down cables that later became what we know today as the Internet. A few years later, that company was bought out and the higher-ups were given a fat check and let go. That’s the official story, anyway. It didn’t really go down like that, but I’m not allowed to tell that truth. I’m sketchy on the details myself, anyway.
So, my father started plans to begin his own business. While he waited to get things set up, he did day-trading of stocks online. One thing led to another, it took a while, and then his father died. Suddenly, the money he had saved was getting his mom (who later remarried) out of financial trouble. With his money for starting the business gone, he continued to do day trading and living off of his retirement fund.
As the years went by, and the stock market started to not do so well, my father became very depressed. He had many dreams of how to support himself, but nothing seemed to be panning out. One day while painting his home, he took a bad fall off of a ladder that was located at the top of some stairs. When he fell off the ladder, he went down the stairs, as well, and the ladder went with him. This fall left him in massive amounts of pain and feeling very depressed.
Not too long afterward, my mom received a copy of his will and his suicide letter in the mail.
That was a long day.
The police in North Carolina, where he lived, entered his home to find him alive, but very sick in his bed after taking an entire bottle of morphine. He proceeded to spend the next week in the psychiatric ward of his local hospital. Around this time, 9/11 happened.
That was a long week.
The doctors at the hospital pumped my father full of antidepressants and continued to see him on an out-patient basis. That medication was not good to him.
Here is where I will never know the full truth, and I’ll explain why later.
There is a small percentage of people who can’t take certain antidepressants. The medications do not metabolize well in them. My father is one of those people. It causes psychotic breakdowns and has led to some violent crimes (for other people – my father never got that bad), as well as memory problems and seizures. When my father went to talk to his doctors about what happened, they refused to discuss it and slapped a silence order on his therapist. My father stopped seeing them – all of them – as well as going off all medications. None of my doctors in the field have ever heard of problems like that with the antidepressant they had put my father on. So is it that rare? Or is my father that messed up mentally? More on that in a minute.
My father still has the memory problems and the seizures. He talks to people who aren’t there. Always has. He does this when he mumbles. He’ll never admit to it, but you can sometimes hear what he’s saying. He also has fanciful tails of the security clearance he used to have for the government, the people he advised, the projects he worked on. These stories are all the truth as he knows it.
Have you ever seen the movie A Beautiful Mind? My father reminds me of the home game.
Will I ever know the truth?
Only if my father receives a diagnosis that points us in one way or the other. And with my dad’s paranoia of the system – any system – we most likely never will see that diagnosis.
My opinion is that while at times I think my mom might have BPD, I’m pretty sure my father does. Everything fits well, and my acorn did not fall far from that tree. If my father is indeed having delusions, that would fit in well to Schizotypal, only in his case, I think it’s been his truth for so long, that he honestly believes it. Or who knows, maybe it really is the truth. As I said, I may never know.
It’s Autism Awareness month here at The Band, and we need you! We encourage everyone to share their stories about autism, what it means to them, and how they deal with it. Please, share your stories with Band Back Together. You can even do it anonymously.
Thursday I went with my daughter to our local theme park. It’s been many years since I’ve been to one – after a couple of hours at Silver Dollar City in Branson, MO I remembered why I don’t go to them.
Between the crowds milling around, moving to and fro in no discernible pattern, and the noise hitting my ears from all sides, I was in autistic hell.
It was because I didn’t properly prepare for the day.
My daughter works for a large, high-end resort and got a smoking deal on season passes, so we each got one. I figured I would mostly use mine to go, walk around a bit, people watch and find a table where I could sit with my laptop and write.
But not this time.
It was our first ever trip to the park and we only were spending a few hours there because my daughter had to be at work. So we rushed from place to place.
That was my first mistake.
I should have gone to the park for the first time when there was no pressure to be anywhere anytime soon. That way, I could mosey along and find a quiet place to sit and take a break when things became overwhelming.
There was no time for that. I was trying to be a good dad so I followed my daughter from place to place, taking only small breaks while she went on rollercoasters.
Rollercoasters are a no-no for me since I had a stroke sixteen years ago, so I avoid them at all costs. I’ve been mocked by people for “being a grown man” and being afraid of roller coasters.
It’s not that I’m afraid, I just don’t need my equilibrium off center for at least the next few hours.
If you have never dealt with sensory overload, be thankful. It can be hell. This day wasn’t quite hell, but it wasn’t heaven either, so I’ll call it Catholic purgatory. That somewhere in between.
When we finally got home, I laid down for a couple hours and it helped a bit, but not as much as I hoped. I spent a couple of hours editing articles for Good Men Project, and then crashed for the night.
I woke up feeling much better and went about my Friday just fine. Until 6 pm. That’s when my Friday night ritual starts. It’s also the way you can tell that I’m single.
Friday night is what I call, Nerd Game Night at my local comic book shop. A bunch of my people gather to play Magic the Gathering, Dungeons and Dragons, Pathfinder or whatever else they want to play.
Normally I handle Nerd Game Night just fine, but this night was different. This night it seemed louder than usual and I needed a few breaks outside where it was quiet.
I asked Gail, the store owner, if it was louder than normal and she didn’t think so, which leads me to believe that this was residual from my day at the theme park.
The good thing is that every time I have an episode that overwhelms my senses, I learn something. This time I learned what I need to do when I hit Silver Dollar City the next time.
I’ll definitely have headphones, even if there’s no music playing, just to drown out some of the noise attacking me from all sides. I also learned that I can’t go on days when I feel rushed.
I learned that as I plan my day at the theme park, I also need to plan some extended down time the next day – possibly a little longer.
Being on the spectrum doesn’t mean that we have to stop doing things that most people consider a lot of fun. It just means that we have to sit down and use our out-of-the box thinking brains to plan our adventures properly, so that the day is fun for us as well.
Thursday wasn’t a wasted day, I look at it as a day of scouting and strategic planning for the next time.
If you deal with sensory issues, don’t let it stop you from spending time with friends and doing enjoyable things. With a little planning, we can enjoy the same things everyone else does, just in a different way.
If you have sensory issues, what do you do to help overcome them? Share your ideas with us so that we can all be better prepared for our next big day out!
This post was previously published on Good Men Project and is reprinted with permission from the author.
While we at The Band work tirelessly to bring you expert resource pages, sometimes the best advice is from someone who has been where you’re standing. What follows is a mixture between a resource page and a post.
I introduce to you, The Band, a Demo Tape.
Take what you need and leave the rest.
I have a quirky sense of humor, coupled with a southern gal’s disposition, so brace yourselves for impact. This will be a bit of a rant, but it’s been building up for awhile, and sometimes ya need a rant to get the point across.
When I moved to West Virginia, I had no idea how downright painful it would be to deal with the uneducated public when they encounter me, my service dogs, and (possibly) one of my seizures while I’m out trying to live my life. It’s as though the burden of WV service dog education has fallen squarely upon my shoulders.
And that? SUCKS!
On behalf of all people with service dogs in WV or elsewhere, listen up:
No, not EVERY service dog is a seeing-eye dog. I am NOT blind.
No, I am NOT training my service dog for another person or a blind person.
No, it is NOT okay for you to talk/whistle/call to my service dog for ANY reason. You are distracting him from his job, and my safety depends upon him doing his job to the very best of his ability. You wouldn’t walk up to and pet, whistle, praise, talk to, or feed someone’s wheelchair, cane, or walker. Don’t do it to my dog.
No, you may NOT pet my service dog. He is WORKING at keeping me safe in what can be a very dangerous environment for me – please respect my needs. My one dog will avoid people who try to walk up and touch him by moving to the other side of me, yet people STILL try to touch him past that. The dog will sigh loudly if someone tries to pet him, yet people find that adorable. Pay attention to the dog’s body cues!
Yes, he is my service dog! I am not just walking around with a random person’s service dog for kicks. It isn’t easy to have such a requirement.
Yes, I NEED a service dog. Even though you cannot see what’s wrong with me, I am disabled. No, my health issues that require a service dog are not something I have ANY desire to speak about in public with a perfect stranger.
Yes, it IS rude to start with “But you don’t look sick” when you ask me why I need service dogs. In fact, I may haul off and punch you if you do so. The blatant disregard and disrespect which runs rampant here is getting old. I’m tired of being judged by my outside ALL of the time. So just stop it. I don’t judge you for wearing your pajamas to the store.
Yes, it IS extremely BAD for your kid to walk up to ANY dog they do not know, let alone tackle a service dog. It’s not the dog’s fault if it bites your kid when it’s your kid who ran up to the dog. The dog is defending itself and its handler. TEACH your children – they are your responsibility. I keep my responsibility on a leash.
Do NOT smack my dog or jerk my dog from me to shove something into my mouth, with the intention of preventing me from swallowing my tongue. STOP BEING IGNORANT. I will NOT swallow my tongue – it’s an old wives’ tale, a person cannot swallow their tongue.
My service dogs are my lifeline; they know more about me and my seizure disorder than you EVER will. Let them do their jobs. Touch my dogs or my person and you risk getting the arse-whoopin’ of your life when I come to. Just ask the well-meaning idiot who broke one of my back teeth with a spoon (a tooth that I still don’t have the money to repair). She slapped my dog and slung him off me, not realizing that I could have choked to death on my own vomit. Not OKAY! I will never be a victim to a random person’s stupidity ever again. Someone should have stood up and stopped her – no one did. Well-meaning idiots are still dangerous idiots. Do NOT be a well-meaning idiot – educate yourself!
Okay, allow me to begin again.
Hi, my name is Tearanny and I have two wonderful service dogs, Drachon and The Fatkid. Drachon is a 7-year-old German Shepherd that loves to swim and play ball at every opportunity. The Fatkid is a 15-year-old chocolate lab cross that loves tummy scratches and anything food related.
We all enjoy time outside together whenever my health and the weather allow. Both are extremely territorial of their yard and their Momma. They are very loving, loyal, and exceptionally well trained to take good care of my special needs.
My boys are both certified and registered Seizure Alert & Assistance Service Dogs. I have left temporal lobe epilepsy which generalizes. It is a brain disorder that results in seizures that cause me to lose consciousness and hurt myself in the process. When these seizures occur, my service dogs sense the chemical changes in my brain chemistry and warn me long before my body presents an aura – pretty amazing by anyone’s standards.
For those that do not know, an “aura” is a distinctive feeling or some other warning sign that a seizure is coming. My boys help me lie down, turn me onto my side, and lie on me to keep me on my side throughout the seizure activity. They can bring me my medication and my telephone upon request, or if either feel that it is necessary at any point.
My boys will lick my face to calm me as I begin to stir from my seizure activity – I’m in a postictal state, a “flight or fight” response immediately after a seizure, and then an extreme exhaustion sets in.
My dogs are a deep emotional support after seizure events. They help me keep my balance as I make my way to the bathroom and bed after seizures or on days when my balance is still affected by bad seizure events. They never judge me for being too sick to brush my teeth, cancelling plans, or failing to change into something fashionable the day after a seizure when I’m too sore to move. They love me unconditionally and I owe them to be worthy of such devotion – they are my shaggy blessings!!
So, if you see us out and about, or anyone else with a service dog, here is the skinny on how to act:
Service Dog Etiquette
Never pet, call, talk, feed, whistle to, or otherwise distract a service dog for ANY reason. To do so can potentially injure a handler and earn the dog a correction; even the most well trained dogs can be distracted. Be kind, considerate, and thoughtful – if you are sincerely a lover of animals, respect the dog’s job and his handler.
Ignore a service dog; it’s truly what the dogs PREFER. Remember, they are NOT pets; they are trained to do a very important job that they take EXTREMELY seriously. A person’s well being is completely reliant upon that dog’s work drive – respect that dog’s drive.
If you feel you must pet a service dog, ASK first. But don’t feel offended if the handler says “No.” Service dogs need to be released from Work Mode to interact with someone; this can be a SEVERE hazard to the health of the handler. The dog (or handler) might be having a bad day, or might be in a hurry. Ever tried to make it through the store when 20 people are asking to pet your service dog and all you want to do is get your groceries and get home because you feel awful? I have, and it is less fun each it happens.
Train children to never waltz up to a strange dog – ANY dog – without first asking permission. Teach them to follow your lead, and make sure your lead is worth following. Teach your kids about safety around dogs and then teach yourself about service dogs.
Speak to the person, not the assistance dog. Most handlers do not mind talking about service dogs and their dog specifically, if they have the time and you are respectful with your inquiry.
Never make assumptions about the individual’s intelligence, feelings or capabilities. Offers of help are appreciated, but ask first. Usually, the human/dog team can get the task done by themselves.
Don’t be afraid of the service dog. There is no need to be afraid of a service dog. They have been professionally trained to have excellent manners and skills. Always approach an assistance dog calmly and speak to their human partner.
If you happen to see me when I’m having a seizure and my dogs are with me, leave us alone. Let my boys do the job they were born and trained to do. I will ask that you keep the well-intentioned idiots away from my boys and me until the floppy-fish dance has concluded. When I come back around, I will call my folks or a friend to pick us up to take us home. Pretty simple, eh? No reason to hit my service dog and break my tooth!
Business Owners and Service Animals
Some customers and employees may be anxious or nervous about an assistance dog in a business establishment. While I reassure them that my service dog is thoroughly trained and has a legal right to be there under the ADA, it gets old repeating myself each time I enter a new establishment. Here are a few tips for business owners:
–Businesses may ask if an animal is a service animal OR ask what tasks it has been trained to perform; however, businesses cannot require special ID cards for the animal or ask about the person’s disability.
–People with disabilities who use service animals cannot be charged extra fees, isolated from other patrons or treated less favorably than other customers. People with assistance dogs deserve the same respect as any other customer. However, if a business such as a hotel normally charges guests for damage that they cause, a customer with a disability may be charged for damage caused by his or her service animal.
–A person with a disability cannot be asked to remove his or her service animal from the premises unless:
(1) the animal is out of control and its owner does not take effective action to control it (for example, a dog that barks repeatedly during a movie), or
(2) the animal poses a direct threat to the health or safety of others. In these cases, the business should give the person with a disability the option to obtain goods and services without having the animal on premises.
–Businesses that sell or prepare food must allow service animals in public areas even if state or local health codes prohibit animals on the premises.
–A business is not required to provide care or food for a service animal, or provide a special area for it to relieve itself.
–Allergies and fear of animals are not valid reasons for denying access or refusing service to people with service animals.
–Violators of the ADA can be required to pay money damages and penalties.
This month on the Band, we’re sending letters to our younger selves – it’s important and it’s freeing. So please, go ahead and submit your own! (you can even do it anonymously)
We are ALSO looking for stories of brain injuries and other problems with the brain, by request, so please, let us know if you’d like to share.
Dear Younger Me,
I can see you so clearly in my memory. Snuggling up with him in a bean bag chair, watching Duck Tales. Making Chewbacca noises at each other, louder and softer, higher and lower, but always laughing about it. Chocolate pudding to get him to take his medicine. Stroking his hair while he seized, and he seized a lot.
I can see it change you. It made you resilient. It made you strong. It made you selfish and afraid. It made you paralyzed damn near thirty years later when your own daughter had a seizure. Even after helping through thousands of them, you panicked. It’s okay, you told yourself, and you meant it. It’s still okay, with hindsight. I would still panic now. You never wanted children because of him. You were afraid of what you would have to do if they were like him. But his wasn’t a genetic condition. It was the result of a brain injury either shortly before or after birth. Maybe it was a stroke before he was even born. Or the high fever after one of his vaccinations. All theories welcome, because we’ll never actually have the answer.
You lived in anticipation of the next Big Bad, and while you had many good things happen, you can’t shake that feeling. Waiting for the next thing to happen. It’s okay. They will, you know, they will happen. And you will meet them all as they do.
Loved you then, love you now, love you always (even when we forget for a minute).
Every month, I hoped that I was pregnant. Despite endless ovulation predictors, pregnancy tests, and prenatal vitamins, I never was. I just knew that I was pregnant during my cousin’s baby shower because I was a whole five days late. I was not. I started my period during the baby shower. I cried in my car alone the whole way home.
After two-and-a-half years of trying to have a baby the old-fashioned way – you know, by relaxing – we turned to science for help. Extensive tests and a passionless affair with a tool we called the dildo-cam (wand ultra-sound) determined that my husband’s swimmers were on, as he so eloquently puts it, on sabbatical. Our doctor felt that IVF (in-vitro fertilization) with ICSI (intracytoplasmic sperm injection) was our best bet at baby-making.
I was shocked. After all the single lines on the pee stick, I never thought I would see two. I am not an optimist. That mother fucking glass is half-empty because some slag took a big gulp from it when I was taking a pee on one of the endlessly negative pregnancy tests. I didn’t even pee on a stick until after I had my blood drawn at the doctor’s office to see if I was pregnant.
I found out I was pregnant in a Fred Meyer bathroom across the freeway from our clinic.
Holy hell was I sick. I was not a beautiful, glowing pregnant person. I was a lanky-haired puking pizza-face. I puked starting at six weeks and didn’t stop until the day I delivered. I even puked when they were sewing me up from my C-section. For all the trouble I’d gone through to get pregnant, I’d hoped for an easy pregnancy.
During an obstetrics appointment, my doctor heard one of the babies heart skip a beat, which freaked me the hell out and warranted an appointment with a heart specialist within the week.
The visit with the heart specialist was short and sweet. It turned out the skip was in my daughter J’s heart and was chalked up to a momentary “short circuit in her electrical system.” So, in essence nothing to worry about, crisis averted for now.
Other than a brief stint of pre-term labor at 34 weeks, which put me on house-arrest, everything went smoothly until delivery day at 37.2 weeks.
The day I heard the most horrible sentence ever: “there’s something wrong with your baby and we don’t know what it is.”
I had a scheduled c-section at 37.2 weeks. Things went well at first. The doctor first pulled out Baby A, my son G, giving him a black eye in the process because he was lodged deep in my pelvis.
Next came Baby B, my daughter J, and the room went silent.
I didn’t notice this until a little later because I was busy trying not to throw up as they put me back together. I did not succeed.
In recovery, where I was shaking like an alcoholic coming off a three-day bender, a nurse asked me if anyone had told me about my daughter. She went on to tell me that there was “something” wrong with my daughter but no one knew what it was and they were trying to figure out if they were going to have to emergency transport her to the Children’s Hospital sixty miles away.
I had no clue what she was talking about. My recovery nurse shot daggers at the big-mouth as she called the anesthesiologist for more anti-shake drugs, which is the technical term according to my redneck ass, because the shakes kicked into overdrive again. The on-call pediatrician came into the recovery room and said basically the same thing as big-mouth, and added that my daughter had some sort of skin covered tumor the size of lime on her tiny 5 pound body at the base of her spine. The pediatrician had a call into Children’s to find out what to do because she had never seen anything like it.
Because her tumor was covered with skin, she didn’t have to be transported, so she stayed with us and was able to come home. Two weeks later, we went to Children’s to find out what was wrong, little did I know it would take six months and three neurosurgeons to identify what her defect was and what to do about it.
At the two weeks of age appointment we found out she had a neural tube defect (NTD).
We were told that she had one type of defect called a myelocystocele (hernial protrusion of spinal cord through a defect in the vertebral column) only to find out that she had a different kind when she had an MRI at six months of age. If really sucks to think your kid has one thing and to have made your peace with it to find out it is something else.
At six months of age, we now had an official diagnosis of lipomeningocele: which is a fatty tumor that attaches to the spinal cord, tethering it and not allowing it stretch as the child grows it. Lipomeningocele have a 1-2/10,000 occurrence rate.
During the MRI we also discovered that she has a bony defect in her left ear called an enlarged vestibular aqueduct that could cause her to go spontaneously deaf in that ear. I lost faith in the neurosurgeon that made the initial diagnosis, so I made it my mission to find the best tumor neurosurgeon in the country and I did.
I found him at Johns Hopkins and sent him J’s records. He agreed with the diagnosis, but not the treatment plan of the original neurosurgeon.
The original neuro, we call him Dr. Asshole around here, wanted to wait until she showed symptoms of nerve damage. The nerve damage symptoms, which are irreversible, include loss of bowel and bladder control and mobility; anything below the lesion could cease functioning. Dr. Johns Hopkins told me to call up his colleague Dr. Awesome, who was the head of neurosurgery at our Children’s Hospital. Dr. Awesome used to be the head of Johns Hopkins.
If I hadn’t been in such an unbelievable fucked up state of, oh my god I have twins and something is wrong with my daughter and how the hell do I do this? I am sure I could have figured out who the best doctor was, but I didn’t and I am glad that I had someone do it for me.
Dr. Awesome is the man.
He basically looked at me, blinked a couple of times and said, “We’re doing J’s surgery as soon as we can get the special instruments from the university.” There was no waiting to see if she would have nerve damage, it was take action now. I love Dr. Awesome. Yes, he is a typical neurosurgeon, so he lacks a little personality, but he’s a great doctor that does not fuck around.
J had surgery at ten months of age and did amazingly. The 4.5 hours she was in surgery were some of the most terrifying of my life and she had to stay in the hospital on her stomach for five days, which was not so fun. She had learned how to stand the week before her surgery and that is all she wanted to do. Did I mention she is also a crazy maniac? She broke the Styrofoam board that held her arm straight for her IV and ripped it out, then they put it in her foot and she ripped that out too.
At two years old, J has full use of her legs, with only slight nerve damage on the left that hasn’t caused any issues yet. She may be looking at a leg brace at some point, but we will deal with that if it occurs.
She has seven specialists that we see every six months that track her progress. They’re all impressed as hell with how well she’s doing. Her left ear does have some slight hearing loss in the low tones, but it’s another thing we just watch.
We watch a lot. I check her toes every morning to make sure they aren’t curling under. I analyze her walk several times a day. I am obsessed with her bowel movements and how much she pees because bowel and bladder function could be the first to go.
I repeat the mantra “life altering not life ending” to myself every night. I cry almost every week. I am thankful for the people that have been there, that have let me talk or not talk. That banded around me from all over the country to help me breathe. I try to stop worrying about the future. It is the hardest thing for me to do.
I worry school and questions about the huge scar on her back. I don’t want to have to explain why she can’t head a soccer ball, be tackled or slide into first base. I don’t want this for her. For a long time I felt like I caused this by doing IVF. It sounds insane and my therapist helped me see that. We spend at on average two days a month at Children’s which helps put things in perspective for me. Seeing a mother carrying a plastic tub for her teenage daughter who has a scarf wrapped around her head is a big slap of reality.
I am an adult.