The Realities of Autism.

It’s been almost six months since E was diagnosed. I look back at my life a year ago, and it is completely different. The most noticeable difference? I use a Kindle Paperwhite now vs. the regular Kindle obviously.  I will never go back. The less noticeable differences? I live in Ohio, and my baby E was diagnosed with Autism. I didn’t sleep the first few months after the diagnosis and I absorbed every book written on the subject of Autism. I learned a lot, but there are a few things that they didn’t mention in any of my books and I’m talking about them here.

It is impossible to be shy when you have a child with a disability. If you were shy before the diagnosis, it’s put aside immediately. Firstly, dealing with doctor after doctor, therapist after therapist, insurance rep after insurance rep, you have to learn people skills. Secondly, you draw attention everywhere you go. All eyes on you.

When I go to the grocery store with my kids, I go to the grocery store. Everyone knows we are there. E doesn’t stay buckled into the cart anymore. He has mastered the unbuckle himself. While I am proud of his skill and dexterity, it presents quite a few challenges. He also screams like a banshee, happy or sad. Once again, I am happy that he is being vocal, but it’s rough on the ears, and it draws quite a bit of attention. When I bring him to the store, I have two options. 1. Bring the stroller. He can’t get out of the five-point harness, and he will stay buckled in the whole time happy. Usually. But then, I also have to push a cart. So the spectacle I make draws quite a few comments. Mostly sweet, but we make ourselves known. Option number 2. I wear him in the Ergo. He likes this for about five minutes. Then he starts to scream, and claw my face and hit me. I power through, and just put things randomly in the cart as I power walk the aisles and hope that I can make a dinner out of something that I’ve grabbed. Cabbage and Baked Beans. You’d be surprised. This with A at my side, “ Can I have this Mom?” “Can I have that?” “This just has just an eenie meenie minie mo bit of sugar in it” “Mom, watch me do this trick” Like I said spectacle. No way to be shy. I have my manufactured jokes and small talk to respond to every quip thrown at me.

With all these people skills you are forced to learn, you think you’d be the life of the party. But not so much. Hanging out and/or talking with friends kind of feels like you are bringing the water balloon to the party. There is an episode of Friends, where they are playing rock, paper, scissors. Joey tries to trump it with fire, and Phoebe trumps it with water balloon. The water balloon is the trump of trumps. This is me when I talk to my friends or go on playdates. Your problems are always such a downer. 100 times worse. I want to join in the conversation, but it’s the equivalent of someone saying, “Oh I tripped on a rock and stubbed my toe” and you say, “My mom died tripping on a rock” and then its just silent and the conversation is over. They talk about their kids throwing a tantrum, and you say, excited to join in, “Oh yeah, E had one last night and he cut open his head again. All his pajamas are getting blood stained and I am just getting so tired of trying to get it out of clothing. Do you know of any good stain removers for blood?” To me this is so casual, and I think I am adding to the conversation, but to them, they are horrified, and it ends all conversation there. Or worse, people are afraid to vent to you because they don’t feel like they can. They feel like their problems pale by comparison. They apologize before they talk, “I know E is ten times worse, but…”

Keeping friends when you have a kid with a disability is hard. You rarely have any extra time for friends, and also you’re going through the five stages of grief all the time. It really interferes with the carefree positivity you used to have. The stages bounce all over the place too. One day you’re in Acceptance, and you feel great and you text all your friends because you feel so happy and back to yourself again, and then the next day you are whiplashed back into Depression. Then Denial. Then Anger.

However, the friends that stick with you though all this are the keepers. They’re lifers. And if they’re lucky, you can share with them your newly acquired social skills.

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Books, Reading, and Underachieving.

I grew up in a culture of reading. We read anything and everything. When my sister and I would go to people’s houses for dinner and they didn’t have children books, we would read whatever they had. We came to be experts on a large variety of random subjects. My dad didn’t care much for television and so until we were older, we didn’t watch a lot. We just read. Below is a story on how my parents lit a fire under me to really “challenge” me.

I was in second grade when my parents started to worry about me academically. There were whispered conversations in the kitchen late at night. “I’m just worried she’ll fall behind.” “N was reading [this title] by her age.” My parents were not novices to the parenting world. I had a sister two years older than me. They knew what to expect. Sort of. Parent teacher conferences were the next week. They decided to wait until then to bring it up with my teacher. In the meantime, they did things with me at home to develop my reading skills to the level they felt I should be at.

Parent Teacher Conference came, and they met with my teacher. “We are worried about her.” “She doesn’t seem to take interest in books her age level.”

My teacher was flabbergasted. She informed my dad that I was reading at a 6th grade level. The books that they were so worried were under my reading level, were chapter books that my peers had not gotten to yet. In fact, none of my peers at that time were reading any chapter books. She assured my parents that I was just fine, and there was no need to try to improve my reading skills, but just continue as always to encourage me to read.

My parents may come off as people with perhaps overly optimistic expectations of their young daughter, but in fairness to them, the person they were comparing me to was a prodigy of books. She read The Bible and The Book of Mormon both before she was eight- in preparation for her baptism. On a dare from my dad, she read Crime and Punishment in 5th grade. By comparison, my Roald Dahl books did look juvenile.

The following year my Dad challenged me to read Little Women. I did. The year after that, my Dad told me it was high time I get interested in Homer. I read most of The Odyssey. No matter how impressive of a reader I was however, my overachiever sister was always reading more. I started reading classics. I didn’t always understand them all, but if N was reading them, then I had to. This rivalry continued throughout my childhood and early adulthood, and developed me into the reader I am today. I’m glad I was encouraged to read things that seemed out of my reach. 

I live by the motto that you can never have too many books. If you don’t have room, buy another bookshelf.

No. Not From Cali.

Three weeks ago I was at Target. Everybody was buying school supplies. I thought either people were really on top of things, or school started earlier in Utah than it did in Ohio. I asked the woman in line behind me when school started. She told me it started the 15th of August. I told her ours didn’t start until after Labor Day. “Cali,” she said. She didn’t ask it as a question, she stated it. Like if I were not living in Utah, I was obviously living in California. The only other alternative in her mind. She said Cali like it was a club. A club I wanted to be a part of. In that moment, I debated playing along. Playing the part of the person from Cali. Saying, “Yep. School never starts before Labor Day in Cali. What’s up with things in Utah?” The casual lie. She would never know. I lived in California with my aunt for summers in college, so I knew enough to keep up the facade.
I’m an honest person, but there are times when it’s so tempting to go along with a story and be that pretend person. They are a stranger, what difference does it make?
I went to Italy with my Aunt and Uncle one summer. On the return trip, they were in first class and I was in coach. I was sitting next to a guy from New Zealand. He asked me about where I was coming from. I told him I was coming back from a month in Italy. He asked me who I was traveling with and I told him, my parents. It was a lie, but a simple one. I got tired of the long story of traveling with my aunt and uncle. With the language barrier in Italy, I couldn’t handle the follow up questions. To avoid this, I started to just say my parents when the Italians would ask. Even though my seat neighbor spoke English, I said it out of habit. It was a bit of a challenge. I was seated next to him for 11 hours. We got along and talked most of the flight and I continued the lie. After awhile, I was tempted to just tell him the truth, but I had been going with it so long, I felt stupid correcting it and I was kind of having fun with it. Being a rich girl from California who jetted away with her parents to Europe for the summer. I casually mentioned them by first name about 5 hours into the flight. He just looked at me and said, I guess it’s true what they say about American kids. You really do call your parents by their first names. “Yep” I said. “That’s us.”

Remembering this story and trying to have more integrity than I did in my twenties, I responded to the woman at Target. “No. Not Cali. Ohio” The excitement of being the girl from Cali was gone. I carried my bag of makeup and diapers to the car.

Undiagnosed for 19 Years.

Disclaimer: I talk about my children, pregnancy, and motherhood usually on my blog. This is a personal post about my health. I get questions often about my blood disorder, so I thought it was time to write up a bit about it. 

I can’t remember a time in my childhood when blacking out was not a normal thing. I remember as a young child, maybe four, being at a playgroup. My vision went black, and I thought to myself, “Ugh, not now” and I sat down on a bench and waited for my vision to return so I could continue playing. I was always tired. I hated having to run the mile at school. I was always the last to cross the finish line. I couldn’t run for more than three minutes without being totally out of breath. I excelled at short distance running because I would do everything in my power to just get the race over with. I wanted to make it across the finish line before I passed out from exertion.

The general consensus from doctors tended to be bad eating. I never thought I ate badly, but apparently I did if I were so low on energy.

When I was 14, I started randomly throwing up. It usually happened after I ate or in the morning. My parents took me to doctors. They did tests. Nothing was out of the ordinary. They put me on acid reducers. Nothing changed. I just became known as the girl who randomly threw up. After a year of daily throwing up, my parents thought maybe I was hiding an eating disorder. I don’t fault them this. I would have thought the same thing. They brought me to a therapist. She talked to me about how maybe it was anxiety-based. I tried anti-anxiety and mediative therapies but the throwing up didn’t stop. I didn’t think I was anxious but maybe it was so suppressed that it was manifesting itself physically. After awhile I did truly get anxiety, but at that point it was really just based on the fear of never knowing when or where I would throw up next. This continued through my teen years.

When I was a freshman in college, things started to get worse. I started to get sick a lot. I had strep three separate occasions and a very bad case of pneumonia within the nine month school year. When the school year ended I went to California to live with my aunt and work for the summer. She was going to Europe and needed somebody to watch her house. Within two weeks of being there, I got a sore throat. I went to the doctor, he looked in my throat and gave me an antibiotic. A few days later, my aunt left for Europe and I got really sick. I left work early, went home, and fell asleep. I slept from three pm to nine am the next morning. I only woke up because I started throwing up. I felt exhausted. I took my temperature and it was 104 degrees. I tried medicine to take it down, but it didn’t touch it. It stayed at 104. I went to the doctor again and they gave me another basic antibiotic without looking at me. California was out of network for my insurance, and so giving them the benefit of the doubt, I think they didn’t want to run up my costs with tests if they thought it was a simple fix. After two days of throwing up and my fever not budging from 104, I called the doctors office. They told me to stick with the antibiotic for two more days. Those two days were bad. I had crazy fever dreams and started to hallucinate things. I tried everything to take my fever down. I tried taking ice baths and then sweating out the fever. The baths helped- just a little. They would take the fever down one degree for about one hour. Not very hopeful at this point, I went to the doctor again. I called my uncle to come and help me. The doctor told me that I had the flu and it would go away on its own. After we got home, my uncle called my mom and asked her to come out to California because he was at a loss of what to do with me health wise. I tried calling other doctors that were not a walk in clinic but they were never taking new patients. People ask me why I didn’t just go to the ER. The answer is, it never even crossed my mind. I was too sick to have much logic and every doctor told me nothing was wrong. I don’t believe I expected anywhere else would be different. The night before my Mom came out, I blacked out on the floor. I remember as I was trying to get up, thinking that I could just let go and die right then if I wanted to. I realized how close to death I was and how easy it was to just give up right then and let go.

The next morning my Mom came. She finally found a doctor for me that was accepting new patients. We went to his office and he was very alarmed about how sick I looked. My skin and eyes were yellow and I was emaciated. He took my vitals and blood and sent me home while he waited on the test results. He told us he would call us the next morning with them. After we left, he was very unsettled about the way I looked and couldn’t wait to send the tests out. He stayed after the office was closed and finished up the test work himself. He called my mom at eight pm to tell us to go to the hospital immediately. I was sleeping on the couch when my mom got the call. I remember being in a very deep sleep. I remember her calling me, and wanting to answer her but I was in a dream like state and couldn’t. I finally did wake myself up. I immediately knew that if my Mom hadn’t woken me up when she did, I wouldn’t have woken up at all. They did tests all night at the hospital. I was admitted at 9 pm to the ER and admitted to the hospital itself at 5 am. They didn’t know what was wrong with me, but they did know that my blood levels were dangerously low. Hepatitis was thrown around because of my yellow skin. When they ruled that out, they thought it was probably Leukemia. I had every test known to man done that night. When they finally admitted me, they let me sleep until they started another round of tests. After a week in the hospital, I was stabilized enough and I convinced them to let me go home. They told me I had to stick around in California for several weeks to monitor me before I could return to Utah. They didn’t want me to fly so when I finally was able to leave California, we drove. When I left to Utah, the doctors still didn’t know what was wrong with me, but I remained stabilized and we were waiting back on the more extensive tests. They were finally able to eliminate Leukemia.

My doctor at the Huntsman Cancer Institute in Utah was finally able to determine that I had Hereditary Spherocytosis. My blood cells were misshapen and fragile. My body had been over compensating my entire life by working double time and making double the cells to make up for the cells that were being destroyed by my body. One day it got sick of it and started shutting down, which was what led me to being hospitalized. My spleen was grossly enlarged from the endless blood cells it was destroying thinking they were sick blood cells. My spleen being eight times the size of a normal one, was pushing against my organs, displacing my kidneys and pushing into my stomach, which was what caused me to throw up for years. I was yellow from the bilirubin which is produced when a blood cell is destroyed. They removed my spleen several months later along with my gallbladder which was irreversibly clogged from the excessive amounts of bilirubin in my blood. This surgery removed most of my problems.

Today there are still things that I need to do to keep up my health, but for the most part I live a very normal life.

I was very curious, as was my doctor who diagnosed the blood disorder, how this could have gone undiagnosed for 19 years. I called every doctors office I had ever been treated at and had them fax over all my records. Every test they had ever done. Every scan.

I looked through them. When doctors take your blood they usually do a complete blood count which gives you your hematocrit (your blood level), your iron levels, your reticulocyte (how many new blood cells your body has), and etc. In every CBC I had since I was born, my blood levels were ridiculously low. Normal for a woman is 39-44. Mine was never over a 30 until after my spleen was removed. I had a few scans done, and in the reports on the scans, it was reported every time, spleen is very enlarged. How did not one, but 10+ doctors never pick up on this? I was lucky that I was okay, but I can’t get over how it was not discovered. I am very picky about the doctors I choose now for me and my children. Mostly, I can’t get over how lucky I am to have survived what I did, and be able to be where I am in my life today. I can never take for granted what I have been given a second chance at.

E’s Autism Story

E was diagnosed with Autism back in April. It was nice to finally have answers. There were a lot of random behaviors that we were concerned about for awhile. The tricky thing about Autism is that there is not a physical test that can be done such as blood work. You have to rely on the expertise of the doctor that they they know what they are talking about, or the efficiency of the test that they administer, that it is a proper diagnosis. Because of this, you get a lot of people that doubt your child’s diagnosis.
We were confidant with it. We saw 2 professionals leading up to even being referred to the developmental pediatrician that we saw. The developmental pediatrician that we saw is a leader in the field, and has been working with Autistic children for 40 years.
Still, a lot of people were surprised hearing E had Autism. I think people tend to believe it is often over diagnosed. If the child isn’t displaying the stereotypical autism symptoms that they know about then they say, “Oh he doesn’t seem like he is autistic” or “you have it pretty easy with him” These comments can be hurtful, but I am learning to brush them off. E has good days and bad days. Some days, to the outsider, you might not be able to tell he has Autism but that doesn’t mean it’s not there and that doesn’t mean it is not difficult for me. I understand that people do have it harder than me, but that doesn’t take away my difficulty.
I know these comments are not ill-intentioned. I think Autism is often misrepresented. People think: Hand flapping, echolalia, tantrums, no smiling, no eye contact ever, and savant.
I thought it might be helpful to talk about autism a bit. Talk about our version of Autism and how E’s manifests itself.

What is Autism?
“Autism, or autism spectrum disorder, refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences. We now know that there is not one autism but many types, caused by different combinations of genetic and environmental influences.
The term “spectrum” reflects the wide variation in challenges and strengths possessed by each person with autism.”**

As mentioned above from Autism Speaks, the spectrum is a “wide variation” so something that one child with Autism exhibits is not the same as another child with Autism.
From the time that E was born, I had struggles getting him to connect with me. There was a period of about 6 months where he was very happy and he liked it when I would throw him into the air and I could get him to respond to me. It was however a lot more work to get him to do that then it was with A when she was an infant. During that 6 month period he was also good with other people. He still preferred me, but I could leave him with a babysitter and he didn’t mind. Around 12 months old he started to get more attached to me, and it started to get harder to draw his attention. He would sometimes go days without responding to me. He did make eye contact sometimes, but we had to work hard for it. Even when we did get it, he would be looking in my direction, but not into my eyes. I could walk into a room and he would continue playing with whatever he was engaged in and not respond to me at all. My husband Eric would get home from work and E would crawl right on past him.
He didn’t seem to mind if I touched him or if Eric touched him or if A touched him. Because of this, my mind never went to Autism. I didn’t believe he had sensory issues. What I was looking for however was Sensory Overload, when what my son really had was Sensory Seeking Behaviors. The reason he loved to be thrown up into the air was because he craved the movement. He stuffed everything in his mouth at once when he was eating because he loved the feel of it. He would come up and squeeze me tight because he was seeking the pressure. The things that I often mistook for affection were actually him trying to seek movement. I don’t doubt that my son loves me, but those were not the ways he was expressing it.
I had the sense that my E was behind in some areas, but I always figured he would catch up. He was a late crawler, he was a late walker, he was clumsy. He didn’t engage in normal play. He acted always much younger than he was.
It wasn’t until he was consistently around peers his age that I realized just how different E was. I was fine with him being different, but I started putting everything together and thought maybe he had Autism.
We were about to move across the country, so I decided to keep an eye on it. I did and in that time it started to escalade more.
When we finally did get the Autism Diagnosis, I was already in. I knew that whether or not it was Autism, my son had some severe delays. E is not low functioning, but he is not high functioning either. He has some big challenges he will need to overcome.

I share this not because I am so angry about the comments that people make. I wouldn’t know what to say in their place either. But I share this because the more we hear people’s stories the more we learn about the many variations of the spectrum.

 

**https://www.autismspeaks.org/what-autism

Child-Led Vs. Parent-Led

How much time do you spend with your kids? One-on-one. It’s a genuine question. How much time do you spend play-playing with your kids. [Play-Play Definition for the clarity of this blog post– Child-Led Play. Doing what they want you to do, imaginary games, etc.] I’m torn. I grew up with the generation of parents that spent time with you, but didn’t necessarily Play-Play with you. They might play Candy Land or Chutes and Ladders with you, but that’s different. They didn’t spend an hour or more a day, on the floor playing blocks, playing imaginary games, playing baby dolls, etc. They might help to facilitate your play. They might set up the pool in the backyard, draw a hopscotch for you, set up stuff to draw with, maybe sit with you and draw for a few minutes even. But Play-Play was reserved for you, siblings, schoolmates, cousins, grandparents, etc. Don’t get me wrong, my parents definitely spent time with me, and I always felt loved, but the play was different then. I would have thought it was so silly if my mom came in the play room with me and Play-Played for an extended period of time. Today, the parenting status quo is more about catering to the child. Engaging with them exclusively. Letting them lead the play. It’s difficult for me because I know that I grew up well, but I can’t help but feel selfish if I am not engaged with my kids or I spend too much time to myself, playing a game on my phone, watching a show on Netflix, or reading. Parents get critiqued all the time today for “missing moments”. I have seen multiple articles berating that parent at the park who dared be on their phone when their child was trying to catch their eye on the monkey bars. It is not as acceptable to go to the park and engage in your own business while your child engages in theirs. I’m also not suggesting that we put our children’s safety at risk by being overly absorbed in our activities. Our parents may not have had phones, but adults when I was a kid still had their hobbies that they did instead of “engaging” with us. This was accepted. It was not expected that the parent revolve their life around their child.

What is the balance? One of A’s first phrases was, “play with me” It was cute at first, but then I started to dread it. 25 times a day. After awhile I start to feel guilty with all my excuses. I try to spend time with my kids, but I can’t realistically Play-Play that much with my children. I have constant feelings and thoughts of guilt and selfishness circulating through my head. “Kids are only young so long. Someday she won’t want to play with me anymore.” But are those valid reasons? Should my day revolve around my kids? I only have 2 kids and I don’t work outside of the home. I undoubtedly have more time than the average mom. In spite of this, I still feel that there is not enough time in the day to do everything that needs to be done; Upkeep the house, cook (there is not a lot E can eat that can be bought from the store) upkeep the family, upkeep myself and still spend what my guilt feels like is adequate amounts of time with my kids.
With E’s issues, he has a lot of therapy appointments. In addition, I’m supposed to spend a certain amount of one-on-one time with him a day interacting, doing sensory and language therapy at home, and drawing him out of repetitions. I try to do this when A is otherwise engaged, and in turn spend one-on-one time with her during the day. But does that one-on-one time have to be playing? When she demands that I Play-Play, is it okay to turn her down? Is spending time together while I get things done and a small amount of parent-led play sufficient? I am asking, because I genuinely do not know. Please comment with all the mommy advice you have. Or daddy advice.

FAQ about Epilepsy

In my last post, I talked about how E was recently diagnosed with Autism. I have received outpourings of support. It seems everywhere I turn, somebody knows someone, or has a relative, or has a child with ASD. The current statistics released from the CDC in 2014 are 1 in 68 have an ASD. For boys, the statistic is 1 in 42. So it is actually quite common. This explains why so many people I know have been touched by someone who has Autism. These statistics started me thinking about something else that effects a member of my family. Epilepsy. 1 in 26 people are diagnosed with Epilepsy. **1 in 26**. That is half the number of people diagnosed with Autism. Why then, is my sister the only person I know that has epilepsy?
I decided to talk to my sister about it. Her thoughts were that perhaps people are not comfortable with bringing it up. It’s something that she has struggled a lot with. People’s reactions to her and having public seizures.
When I tell people that my sister has epilepsy, I am usually met with a many questions driven by sincere interest and curiosity. It is my belief that if more people were informed on Epilpesy more people would be comfortable sharing it. It’s scary to watch someone have a seizure and so people in general become uncomfortable if they hear someone has seizures. They are afraid that they might have one around them and they won’t know what to do.

Below is a brief Q&A about epilepsy that I did with my sister. I compiled the most common questions that I get asked. If anybody has any other questions please feel free to comment and my sister will answer that as well.

Some background, Sara was diagnosed with Epilepsy at 13 years old. She is now 21. Her epilepsy is treatment resistant, which means while she is able to control the seizure’s intensity with medication, she still suffers from them regularly. She recently, 2.5 years ago, had a VNS implant surgically inserted into her neck, which is attached to her Vagus Nerve. It’s interesting stuff. Here is a link. http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns

Do you ever hide your epilepsy from those that you know?
Yes. I used to more. For years I used to hide it. I would tell certain people but I didn’t like telling them. These days, it’s not that I hide it from people, I just don’t like going around telling people, “I have epilepsy”. In the past I wouldn’t tell someone and then if I were around them a lot, I would have a seizure and I would be forced to tell them. I used to feel that I had to flat out say I have epilepsy, but now if I am with them and I am feeling weird (pre-seizure aura) I might say something, or if it comes up in conversation I might say something. I used to think I had to hide it, then I felt like I had to tell people right away, now just if it comes up, then it comes up.

How do people usually react when you tell them?
They react differently. Some people act kind of scared. You can hear the tone in their voice. Like they are nervous and they don’t really want to be there anymore talking about it. Some people I tell them, and they say, “I’m so sorry!” and they just keep apologizing. I think, “Why do you keep apologizing, it’s not like you do did anything”. Some people just say, “Oh, I didn’t know that”. So really there is a huge variety of reactions. When I was younger and I would tell my friends, they would stare at me like I was a freak and then I realized they weren’t really my friends.

Why do you think people are so afraid when you have a seizure, even if it’s a partial?
It’s something that you hear about, but aren’t really familiar with. When people hear you have seizures then they are afraid you are going to have one right then, and they won’t know what to do. People don’t like different.

Do you think it’s fear based?
Yeah. Mainly.

What are the types of Seizures that you have had?
I’ve had three different kinds. The first one is the *Grand Mal Seizure* or also known as Tonic Clonic. These are the typical ones you see on TV. Where you fall on the ground, and you’re shaking and foam’s coming out of your mouth. When someone thinks of a seizure this is mainly what comes to mind. I had Grand Mal’s originally. Then I went on medication and I still had them. I went on a second medication, and I stopped having them, unless I missed a dose of my medication.
The second kind are *Partial Complex* seizures. This type of seizure is where it’s different for everyone. Partial Complex means movement. With mine, I would freeze in place, clench my left fist and I would twist my body and freeze in the air. I would stand there for about 15 seconds before starting to come out of it. That type of seizure happened for me for 2 years.
The third one and the only ones I now have are *Simple Partial*.
They don’t have movement. With mine, I’ll freeze. It’s almost like I’m staring off into space. I have no control over my body, but I’m aware of everything around me. Someone could say my name a billion times and sometimes I can respond, other times I can’t.

What’s it like when you have a seizure? Are you aware?

*Grand Mal* These are terrifying. They are the scariest things I have ever experienced. If I’m standing, I fall down to the ground. I’ve been lucky to have most of mine when I am already laying down. I twist to the left and I convulse. It sounds like the whole room is echoing. I hear what people are saying. Every word echoes in my mind multiple times. I feel out of body, I feel like I’m looking down on my body when I’m having one. I can feel myself shaking. I grunt involuntarily and as I come out of the seizure I can hear my body making that noise. It scares me. Quite a few times I have bit my lip to the point of it bleeding a lot. It takes about 5 minutes for me to come completely out of the seizure after the shaking. Even when your body is not shaking, you’re still in the seizure. Your body’s in the clonic stage. I’m exhausted for the entire day. I have a hard time moving on my own and I sleep for a long time after.
*Complex Partial* It feels like my stomach is jumping because it knows what is happening. I have an aura before, which feels like a sharp headache. This precedes the seizure. You see the world in a different way when you are in a seizure. You’re looking around and you have weird thoughts. I feel paranoid. I have completely irrational thoughts.
*Simple Partial* I have an aura with these too. Sometimes in these I clench my fist as well. I am more aware in a simple than a complex. My head throbs. The seizure lasts about 10 seconds. But sometimes they come in clusters, and then each individual one lasts about 5 seconds. The cluster could last much longer though. After a Simple Partial is over. it takes me about 30 seconds to be myself again.

Why do people use service dogs with epilepsy? Do you have one?
I don’t have a service dog. There are people who need them. The dogs are trained to have a sense that the seizure is coming. It then can alert the person or family that something is happening, and get the person to safety. I don’t have one because I don’t need one. Service dogs tend to be for the people who have seizures out of no where.

 

That’s all for the FAQ, please don’t hesitate to ask any questions you might have.

For more information, check out Sara’s blog: http://theepilepticlifeofsara.blogspot.com/

And/or her YouTube Channel: https://www.youtube.com/channel/UCO4emORyDRkS0ghS-CetGMQ