When we first told A about E’s autism diagnosis and what that all entailed, we tried to focus on the good. What made him special. What his strengths and weaknesses vs. her strengths and weaknesses are. So it was kind of cute when she started referring to it as “optism or optimism”. E would be melting down somewhere and she would say, “That’s my brother, he’s just two. He has optimism.”

I went to an Autism Conference last month and one of the speakers there, Autism Daddy*, did a presentation on Autism Perks. It got me thinking to what my Autism Perks are. It’s so easy and completely understandable to get caught up in the negative. Sometimes focusing on the perks give you a little boost. Seeing the good in a hard situation.

1. Behavioral Experts on speed dial. When I had A, I was at a loss of what to do most of the time. I wanted a handbook on her. How do I change her awake times from night to day? What behaviors should I let go and what behaviors should I worry about? How do I get her to eat this food? There were so many questions, and people would tell me, kids don’t come with a handbook. You have to figure them out through trial and error. Hundreds of dollars of Amazon Books later, I have her about halfway figured out. With E though, I do have a handbook. Well, not an actual handbook, but something even better.  A whole team of experts at my disposal. Yesterday I had an appointment with his Developmental Specialist, and we trouble shot his sleep issues. By the end of the appointment, we had some good ideas worked out and we tackled some of his self-harm issues. I’ll put them into play to see if they work, and if they don’t I’ll text her or see her again next week. I literally have five people with masters degrees helping me figure out E. It’s awesome. Also, equally awesome that they get just as excited about his milestones as I do. When I’m in tears over something amazing he has done, they are too. It really does take a village, and I’m so happy to have them at my fingertips at all times.

2. You know the Cheers theme song? “Sometimes you wanna go where everybody knows your name” Well, that’s another perk. Everywhere I go, people remember and know my name. We stick out thanks to E’s fun outbursts. They’re not always him screaming, just things that draw attention. Today he grabbed my wallet out of my hand and threw it to the back of the line when I was paying for food at a restaurant. People are nice though. They all know me and E and A. I live in a city, but I get to enjoy a small town feel. Costco, Once Upon A Child, Kroger. They all know my name. It sounds cheesy, but it gives me the sense of community. It can get lonely going through the monotony of the day over and over again. When people remember you and know you, it makes life that much friendlier. So thank you E. Thank you for throwing my wallet to the back of the line. We made some new friends when they helped me pick up my change, and credit cards.

3. Guys, I have mad muscles. Like I am insanely strong. I pick up my over 50 lb. suitcase when I am traveling and place it by myself into the overhead compartment with one hand. This may not sound amazingly strong to you, but I didn’t used to be able to do this. You know those people who ask the cashier to scan underneath their cart because they don’t want to lift up the heavy items? Yeah. That’s not me. Not with my strength. I pick up all the stuff from the bottom and put it on the conveyer belt like it’s no big deal. Because really, it’s not. For me. Lifting E all the time when he won’t walk, or when it’s not safe for him to walk, or when he is having a tantrum, it builds up my strength. It also can throw out my back, so I have to be careful, which brings me to the next one.

4. Handicap sticker. Man, this is a lifesaver. And honestly, it probably would not be that big of a deal if I didn’t have E. Which I guess is the point of it. After severe back pains from holding him all the time in the parking lot while he tried to get down and run into a car or having to turn around by the time I got into the store, because he was already worked up from the walk, I am so glad to be able to park close. At first I felt guilty using it because I thought well, he’s not in a wheelchair and I can physically carry him. However after many sleepless nights filled with back pain, I warmed to the idea.

5. Before I had E, I would always bring headphones with me on my flights. I hated being stuck without them if there was a crying baby. Now, I am immune to it. My sister and I were on a flight but not sitting together. After the flight, we were getting off the plane, and she told me she had not really been able to sleep because of the crying baby. I was shocked. I had not heard anything. When I do hear a crying baby, I am so happy. It means it’s not mine. Hearing someone else deal with it just makes me feel like I am not the only one who has a baby or toddler that screams bloody murder at the grocery store. Also, after 2.5 years of it, there is almost comfort in the sound. Well, maybe I wouldn’t go that far, but almost.

6. Last but not least. Free babysitting. This is the best. Time to just do whatever I want. When I had A, I remember my friends who had kids who were in school and just imagining the day that I too could go to the grocery store by myself. Or maybe just read by myself in my room for a few hours. I just longed to do something by myself that was just for me. I felt so lost in motherhood and wanted some escape sometimes. I thought of hiring a part time babysitter, but financially it was not really an option. With E, it’s definitely more intense, the time that I spend with him, but those respite care hours that I spend by myself, I just feel really lucky that I have the luxury of time off during my week from being a mom. I feel recharged after, and just a more effective mom because of it.

There are many more perks that I could list. But I wouldn’t want to brag too much. 🙂 All in all, I’m pretty grateful for the good and the bad in my life. I feel pretty lucky to have the family that I do.

* http://www.theautismdaddy.com/

So many of the things I’ve done in my life, and continue to do, are dictated by how to stay safe. In college, I wanted to join a biweekly evening study group on campus, but couldn’t initially because it wasn’t safe to walk alone at night. My male friend offered to start walking me up there and staying at the library while I went to my group. I could never go on a date without telling a friend my itinerary and having them check up on me. I learned in my early teen years to have a certain kind of facial expression when I was out alone so as not to encourage unwanted attention. I would often use a fake wedding ring to ward off unwanted attention. (Still only worked 50% of the time) These things I named are just the tip of the iceberg what women deal with daily. I’ve never really thought twice about them, I just do them. Even with all the safeholds we women put into place, sexual abuse and harassment are still overwhelmingly commonplace. I logged onto Facebook and Instagram and was overwhelmed by the brave women standing up and saying “me too”. With this, I’ll join them. Me too.

Why are we so afraid to speak up if it’s so commonplace? I don’t know everyone else’s reasons, but these are mine.

1. Fear of not being believed. Sometimes even by yourself. Doubt comes into our minds, niggling. Was it true assault/abuse? Could I have done more? Once we come to terms with the true nature of the circumstance, it’s even more terrifying to tell someone else. More times than not, we aren’t believed.

2. Fear of being regarded as weak and/or a victim. I regard myself as a strong woman. Coming to terms with being in a situation where I was taken advantage of in some capacity is hard to admit to myself, let alone others. Being regarded as a victim is just as bad for me. I don’t want to be looked at differently and treated differently. I don’t want people to feel sorry for me either. Sexual abuse/harassment IS a heavy subject and one that isn’t always easy to broach.

3. Feeling alone. I felt that what happened to me had only happened to me. I’d venture to guess that I’m not the only one who felt that way. Talking to others and seeing this recent social media response has definitely proved me wrong.

It’s powerful and uplifting to see people coming together. Let’s keep at it. To those other  #metoo’s. I see you.

 

*i apologize for typos and grammar errors. This was written on my phone in the waiting room while my son was at OT.

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.

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.

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.

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.