Atypically Correct

To start with, both of my kids have terrible teeth. So do I. Isn’t that the way it goes? To add to this, until recently, E has not let us anywhere near his mouth in terms of brushing. Other special needs parents can commiserate. Teeth are one of the last things on the long list of things to take care of with a child like E. I have taken E to the dentist for his 6 month check-ups to get him used to the idea of the dentist. He has responded well but hasn’t let her do much in the way of an actual checkup. One day, after E fell asleep in the car, I noticed his teeth. The ones he never lets me get a close look at. They were rotting through. The next day at school, his teacher called me to tell me that one of his molars had chipped. E is a grinder. Whenever he gets excited he grinds. The dentist and I had talked about needing to put E under to fix his teeth that I was sure were deteriorating, but we wanted to wait a bit longer until there was more obvious damage. I knew it was a thing we had to do most likely, it was just a matter of when.

We chose a day. I wasn’t too nervous about it. E has been under before. Two different times for minor procedures. Procedures that took under 30 minutes. This was going to be about two hours. The dentist wanted to x-ray, do a cleaning, seal his teeth that didn’t need fixing and just get a general idea of what needed to be done. She said that she could restore the front teeth but those fillings often don’t adhere as well and need to be fixed later. Wanting to avoid going under again I told her to just pull those. E has done a lot better with doctors lately and I wasn’t worried about the waiting time before the procedure as much as in past times. E did well leading up to the procedure. He was scared when we took him back to the OR, but he let them put the mask on, and fell asleep pretty quickly.

Often times I look back at situations in my life and I think of the person before the situation. The person who has no idea what is going to hit her. What I thought would be a very routine procedure, and it was in a sense, no complications, turned out to be a traumatic experience for the both of us. I remember waiting for him to wake up and thinking, the worst of it was over. He might be a little grumpy, but I would take him home and we could watch a movie and lounge for the rest of the day. Turns out I underestimated the situation quite a lot. A typical five-year-old, I could have prepped for the surgery. I would have been able to explain what would happen. He would understand that teeth fall out, and they grow back. I would have been able to explain why he was hooked up to wires and most importantly, I would have been able to adequately comfort him. That is what kills me the most with these situations. I feel helpless. I have no idea what is working for him. If I am helping him, if I am making the situation worse. I don’t know what he needs from me. I do my best anyway, trying to guess what he needs. It’s such a hard thing as a parent, to see your child in so much distress and not be able to do a thing.

They told me in the recovery room that he would start waking up slowly and may get a bit squirmy and grumpy. After 40 minutes of waiting, I asked the nurse when he would start to wake up. He said it could be up to an hour. After he left the room, E sat straight up. For 10 minutes he just sat there rather catatonic. I thought the worst was over. I thought I had lucked out and he was going to be fine. No grumpiness. However, right at the 10 minute mark, he seemed to realize what was happening. He started grabbing at the wires, he started screaming and trying to get away from everything and nothing. For his privacy, I’ll won’t go into the details of the behavior. It’s sufficient to say, he was very upset about everything. He was feeling funny about the anesthesia, his numb mouth, the blood, the cords, the new feeling in his mouth. It was a long 30 minutes of trying to calm him down and keep him from severely hurting himself. I almost asked if they could give him a sedative, but I thought that once we got out of there and he knew we were going home that he would be okay. In the past that has worked. This time he was too agitated, disconnected, and out of control to be able to realize what was going on. He wouldn’t sit in the wheelchair so they had to wheel both of us out with him on my lap flailing and screaming. A few years ago, I was very aware of E’s movements when he was in this kind of state. I anticipated his moves more and acted defensively to avoid getting hurt. It didn’t work all the time, I still had my share of split lips, black eyes, broken nose, etc. This time not as trained as I used to be I took my eyes off his head. We were about to leave the hospital, and I was keeping my eyes open for my sister who was driving us home. Right at that moment, he hit his head back at me full force straight toward my face. There was a huge crack and everyone around me stared in shock, not sure what to do. I told them I was fine, because I didn’t really have any other options at this moment. I just wanted to get E in the car as quick as I could. With the help of 3 people, we finally got him in. My sister dropped us off at home and the meltdown continued. I couldn’t take my eyes off of him for more than a second or he would try to harm himself. Out of all of his meltdowns, this was the worst. Adding to that, he is a lot stronger than he used to be. With my nose in so much pain, I had to sit there and try to hold him and keep him safe. I had no idea if this was making it worse or better for him. I just was trying to do anything I could to help him and keep him from harming himself. I had Eric come home from work early and help me, but his work is an hour away, so I still had to wait. When E calmed down enough to look in the mirror he was so upset. He kept asking for his teeth back on. I was heartbroken for him, not being able to explain in a way that he would understand what had happened to his teeth. I finally was able to take advil once Eric got home, and he took over for me. I shut myself in my room for the rest of the day. My nose was hugely swollen. It took me about 3 days until I felt I could parent again. His behavior currently is not as bad as it was that day, but he’s still had an increase in self harm and meltdowns. The third day after the surgery, he started to have a meltdown. I felt like I was up to the task again to help him. I was nervous about it, but I tried to comfort him and help him. I started showing him old photos on my phone and he started to calm. After a few minutes, he turned to me and said, Mommy big hug? I gave him a huge hug and he stayed that way for a full minute. I felt like maybe I was adequate as a mother after all.

He doesn’t understand the situation still. He still asks me to put his teeth back on daily and then tries to take my teeth off when I say later. I still have pain where he hit me. The black eye went away, the swelling has subsided some and I went to the doctor for an x-ray. The doctor confirmed a break but didn’t think that it needs to be reset. He thinks the crookedness is because of swelling. I guess we will see. If I’m still having problems in a few weeks, I will go to an ENT.

I’m not sure really the purpose of writing this is. Not for sympathy. That is usually why I avoid writing about certain things. I don’t want the pity. I know that I go through hard things and this was difficult, but I am overwhelmingly grateful for all of the blessings that I have. For my healthy children, for an amazing dentist, for amazing nurses that helped us through it. For family, for friends. Things could always be much worse than they are and I am grateful for my situation. Writing this is mostly cathartic. And a little bit about sharing my story. There are a lot of things that happen that I choose not to share. I share tidbits here and there, but a lot of the really hard stuff I don’t. My life is so much more than autism and I like to celebrate everything. When I do share, I like the humanity of sharing my stories and hearing other people’s. We live in a culture of everything being perfect for the internet. Everything is curated for social media. That’s not life. Life is real, full of good and bad. Hard and harder. Joy and happiness.

After Thanksgiving, I was tired. I thought I was just making up for lost sleep from the prior week with family in town. But, no matter how much I slept, I couldn’t overcome my fatigue. I would bring my kids to school and then go back home for a nap. I would then sleep until my alarm would go off at 2, to start getting ready to pick the kids up. Even after all this rest, at 2 pm in the afternoon, I still was so tired. I could have slept even longer. This went on for several weeks.

I was tired driving. The drive to my sons school, 30 mins there and 30 mins back was dangerous. I would fade. I was worried about falling asleep at the wheel. At the gas station one afternoon, pulling in, I misestimated the depth of the turn and hit one of the poles. I started having my husband take the kids to school for me because I felt it wasn’t safe for me to be driving. He usually has to be at work an hour before we get the kids to school, so he had to miss meetings in order to do this, but I didn’t really know what else to do.

One afternoon, I woke up and I could not get out of my fog. As I was walking around the house trying to wake up, trying to find a way to get out of this fatigue, I remembered something. Like almost from a past life. I am anemic. My blood must be low. I have a blood disease.

When I was 19, after years of fatigue and sickness, my body started to shut down. My mom took me to the hospital, and it was a good thing she did, because my body was dying. Upon admittance to the hospital, I was told, another hour and I probably wouldn’t have made it. I didn’t need to be told this. I knew my body was shutting down. I could feel myself fading, and I had to make an effort to continue. 

After many months of testing, I was diagnosed with a blood disorder. Spheroctyosis. This means that a large portion of my blood is misshapen. Instead of the flexible disc like shape the red blood cell should have, mine are like over inflated balloons. At the smallest nudge, they are destroyed. My body had tried it’s best to overcompensate for this up until my hospitalization, but it stopped. A case of mono made my body weaker. This caused me to catch just about every typically benign virus under the sun, and in my weakened body, they were in essence killing me. My body was not able to produce blood to make up for the deficit any longer. 

When they first tested me, they thought my panels had produced false positives. They didn’t think it was possible to have that many viruses in your body. Steroids helped my blood to produce in rapidity. My body was finally able to heal and fight the infections. My spleen was removed several months later. A spleen helps to fight sickness by destroying misshapen blood cells. My blood cells were being destroyed, because even though they were healthy, albeit fragile, they were not the correct shape. These were the ones that actually made it to the spleen and were not destroyed just bumping around. 

Luckily, not all my blood is round spheres. Only about 75%. Without a spleen, I need many vaccinations to guard me against certain infections. But without my spleen, my blood cells are not constantly being destroyed. 

I have lived fairly healthy since my spleen was removed. Even without my spleen, my body still has to work hard in order to produce extra blood cells. They are still destroyed in my body, just not as much. 

It’s funny because after living so many years healthy, my mind has almost forgotten that I have a blood disorder. All of the memories seem as if they belong to another life. Except for when I smell medical tape. I was at the doctors office waiting for my physical when I smelled medical tape. My heart started beating rapidly. My watch was going off to warn me about my spiking heart rate. They took my blood pressure. Normally having such low blood pressure, that I black out when I stand up, it was rocket high. The body remembers where the mind forgets.

My blood disorder is rare. 1 in 250,000. My kind is even rarer. It is usually genetic. Mine, is a spontaneous mutation. That occurs in 1 of 5 cases. 

Because my case was so unusual, and because I was being treated at a teaching hospital, my case naturally excited my doctor. ‘Would I like to donate my spleen to research he asked me excitedly?!’  ‘Sure..’  What else would I do with it? 

He wrote a paper about my case, and informed me regularly just how interesting my case was. 

At appointments, he would make sure that I took notes, so I could understand everything about my rare illness. In my being a normal human being, I looked away from his paper once, and I was scolded properly for not caring about my illness and taking responsibility to learn about it.

Six months post op, after the paper was written and published, I was at a follow up appointment. ‘Can the Dr bring in a student?’ the nurse asked me after taking my vitals. I don’t mind, I told him. Bursting through the door shortly after was a very excited student. ‘I am so excited to finally meet you!’ She exclaimed as she shook my hand. ‘I have heard all about your case! Your spleen, I can’t believe it was really 8 times the normal size. Do you know how rare your case is? I can’t believe I am actually meeting you, we just have heard so much about your.’

I sat kind of stunned as I realized I had acquired a fanbase. And an apparent groupie, who had somehow convinced the doctor that she would be useful at this appointment. She wasn’t. I guess I can’t blame her though. It was an interesting case. My spleen was 5 pounds. It had displaced my kidneys. She I am sure went on to become a very successful doctor. 

To follow through on my original story though, lots of b-12 shots and folate later, I am feeling less tired. An appointment with a hematologist scheduled, and it’s amazing how something that was dormant for so long feels like it never left me.

I think it would be interesting to be a doctor that diagnoses autism. A family comes to you in a very vulnerable place. You give them the dreaded diagnosis and they go home and learn how to deal with it. The next check-up, the parents that you met last time are just a little stronger. Then the next time, and the next time. You see these changes happen. Until 1-2 years later, and they are no longer the person that they were at the initial appointment. It is a metamorphosis process of sorts that you are forced into as parents of children with special needs. No one asks for this life, but you take it and you adjust, and you become the person you need to be. Out of necessity. It would be hard to give the person the diagnosis, and know that you are drastically changing this person’s life. Obviously, the doctor is not actually the one changing their life, but it is the onset of their new reality. The actual diagnosis.

I would never want to go back and live that 6 months following diagnosis again. It was a dark, confusing, hard time. When I see parents about to get the diagnosis/ ones who just did, my heart goes out to them. I hurt for them knowing what is to come. I give advice, but nothing I can do can change what they are going through. You just have to step aside and watch them change into the person that they need to be. As they learn to do autism their way. Don’t get me wrong, I love the community in the autism world, and I don’t know what I would have done without people’s help along the way. Those who answered my questions about therapy, behaviors, self-care. But nothing can take away that stage that you must go through to be the Autism Parent you need to be.

I distinctly remember a meltdown that E was having one night. He was out of control. Literally. I don’t think he had actual control over what he was doing anymore. Nothing would get him to calm down. I was holding him in his room in the dark trying to get him to go back to sleep. He was flailing and trying to move everywhere. I was holding him as best as I could to keep him safe from himself. I could not comfort him. I just sat. I held it together at first, but then he wriggled a bit from the position I was holding him in and head butted me in the lip. Hard. My lip was split, swollen, and bleeding. That instant of sheer pain destroyed the barrier that was keeping me together. I sat there crying, holding my son, pleading with a higher power to help me know what to do. I thought in that moment, I cannot do this. I am not strong enough to handle this situation. I wondered why I was given a child like this. I felt claustrophobic, wondering if there was a light at the end of the tunnel. My husband came up to check on the situation. He took E from me and had a turn trying to calm him down. I went into my room and cried and cried and cried. I felt like a failure, unable to calm my own child. I thought it impossible that I could stretch any further without breaking. But I did. The wounds heal into a sort of armor, and you get up and you do it again and again and again. You get used to people staring in public when your child melts down. You get to used to the comments of others, strangers and sometimes those close to you even, about your parenting. You get used to having to dodge your child’s aggressive behaviors as if you are in a boxing match. You get used to functioning on 3 hours of sleep in a 24-hour period. You get used to filling out paper work and going to countless appointments. Strong people are not born strong. They are made.

I’m an online shopper. I get a lot of stuff online. Diapers, wipes, cleaning supplies, clothes for me, clothes for the kids, books. You get it. There are so many pros to online shopping, it’s hard to say no. Free shipping, cheap prices, not having to go into a store to find said thing. It used to be just Amazon that did the free shipping thing, but now all of the websites do free shipping or at least free shipping after 50 dollars. It’s gotten to the point where if a website actually charges me for shipping, I get offended. I scoff. I cannot believe that they would dare add a 7.99 shipping charge onto my order. I’m so spoiled. We’re all so spoiled with the conveniences of our modern world. With that said, I lead into my problem.

It’s a very first world problem, but it is a problem. Any online shopper will sympathize with me I am sure. The mailman. The deliverer of my goods. The man who judges every purchase, every bill, how many packages I get, where the packages are from. I get a junk mail letter that looks like a collectors notice. I rip it open and relieved to see it is just a junk mail fake out, I want to shout back out the door at the mailman. “No worries! Just a false alarm! We actually are quite responsible with our finances!” The more packages I get, the more I feel like he judges the bills that I get. “Hmm… a second bill from the ENT. Maybe she should spend more time paying her bills and not ordering packages”. I think of all the mail I get and what my mailman can gather from me based on my parcels, magazines, letters, and so forth. He knows all my health problems, well at least the many specialists my family and I see. He knows we are LDS because he sees our church magazines come monthly. He knows we have a lot of family in Utah who send us letters and packages. I just feel like the mailman could be part detective. Why hire a private eye for anything when you can just question the mailman.

At first most of the stuff I ordered was from Amazon. So, he’d bring my big package of Subscribe and Save and I’d say, “Oh there’s my monthly supply of diapers. Thanks”. Then, I’d get another box and I’d say, “Oh, there are my wipes”.  After a few packages I start running out of excuses. I want to just yell out after him, “My son has autism!” I don’t know what it has to do with anything, but it seems like a decent enough excuse to use.

A recently had a growth spurt. When my kids have growth spurts they grow like two sizes at once and then just stay there for a year or so. So, I ordered her summer clothes and new shoes at the beginning of the summer. Then literally two weeks later she sprouted out of everything and I had to order new things. I guess what online ordering does have to do with Autism is that it’s hard for me to get to the store. So I buy a bunch of things, try them on, and ship back the ones that don’t work. I know that is easier for me and it’s nothing to be ashamed of, but I cannot help feeling guilty and sheepish when I get the packages in the mail. The worst thing is, companies lately love to send things out all individually. I don’t know why they do this. It’s not great for them long term. We see all those boxes and we become ashamed, or worse, they come on a Saturday when the husband is home and he freaks out and starts frantically scrolling on his phone checking the bank accounts to see if you have spent all of everything. They should have husband safe delivery that you can check when you order something. Because like I mentioned before, when husband sees it, you have to explain every purchase and then you have to look really responsible and return at least one item. You say something like, “Oh, I was just ordering these really to look at them. I am going to return them now that I was able to feel the beautiful quality of the clothes.” Then you ship them back cursing the stupid company that shipped them out to be delivered on a Saturday. It’s not even that the wife is overspending. At least not in my case. It’s just that husbands don’t really know the price of how much things are. If it were up to my husband, the shoe budget for the kids would be three dollars a season.

The last two weeks, I have had a lot of packages coming. Therapy items for E, clothes for A, cleaning supplies for the house, a few books to read for my upcoming trip, maybe some clothes for me on the side. Just to try on of course. Then return.

The first three packages that were delivered were delivered on the same day. The mailman set them down on the porch and said, “Got some heavy ones for you.” I used the diaper excuse, It’s the default, the first one that comes to my mind. The next day, I got a few more. “Oh, looks like they decided to send out everything I ordered on the same day LOL.” The next day, even more. So embarrassing. Saturday I get some with the husband home. Some of these packages I am getting are literally a humongous box with a tiny little box of cabinet locks for baby proofing. I am sure the mailman just loves to watch the drama unfold as he delivers his Saturday goods. Out of excuses, the first reaction that came to me was one of faux shock. If you can’t beat them join them, right?  “Whoa, so many packages? What the heck?” I ask. Then I shake my head incredulously as I take them from him, as if I am not the one who ordered the J. Crew boxes piling up in my arms. As if it is a burden and the company is randomly sending me boxes of free clothes to annoy me.

Today, the mailman just delivered one package. It was the last of them. The final try on of shoes for A. From Mini Boden. Mini Boden is based in the UK. So even if the mail man did not know what was in there, it was written on the customs form on the box with the price stamped right on it. No excuse needed. I opened my mouth to say, “A, some shoes, for you to try on and probably we will return most of them,” but I was out of energy.

If you’re not sick of hearing about us yet, here is our year in review.

 

Janmohamed Family Highlights

January: Eric accepts new job working for Mars, the Mars responsible for making M and M’s, in Toledo, Ohio. Mars recently acquired Iams Pet Food, and Eric is working at one of the Iams Plants. I fly out to Ohio to find us a home accompanied by my sister because Eric was busy tying up loose ends at Young Living. Found a home in 48 hours. Harassed the landlord incessantly, telling him I was an amazing tenant over and over again. I amassed 26 back and forth emails before he called me to tell me that I got the house.

February: Mars packed us up and moved us, very stress-free. Flew to Ohio. Thought it would be fine not putting A in a preschool for the rest of the year. Majorly mistaken. After 7 days of pure chaos, I found a preschool for A before we even had our internet set up. After touring the preschool and liking it, I asked them if they could take her the next day. They did and I was able to finally start unpacking in peace.

March: Trips back and forth to Lexington, Kentucky to visit the sister. These continued until July when she moved. I do not know if this is correlated to us visiting her every possible chance and setting up our big air mattress in the center of her living room each time. I tell myself it isn’t.

April: Trip to the Windy City. The kids traded off throwing up in every restaurant we went to. We amassed an entire new wardrobe, because amazingly after the second and even third time we never thought to bring a change of clothes. Target for the win. And the Chicago Outlets.

May: My birthday. The most important time of year. Oh and E’s I guess is in May too. We had his birthday party in Lexington. Surprise Surprise. Aforementioned sister also graduated with her Masters from University of Kentucky that weekend so most of the Bourgerie Family was in town. 

June: Beach visits. Went to Detroit. A visit from the Uncle and Aunt in Minneapolis. They were on a niece tour visiting all their nieces East of the Mississippi. We were honored to be on the tour. Humidity in Toledo starts to get thick.

July: Fourth of July in Kentucky. Trip to Utah. Stranded in Houston. We finally made it to Utah in the exact time it would have taken us to drive. Lots of Bourgerie and Janmohamed family time. Takes a bit of adjustment for the kids to get used to time change and new place.

August: Home from Utah for the last half of August. A few more beach days. Lots of park days. Approved for Respite Care and my life changed. At the start, I usually just sat in a parking lot and ate Burger King and thought, this is what life is really about.

September: I go to New Orleans for an Autism Conference. Temple Grandin and me become pretty much BFF’s. My mom and I walk around the French Quarter. We find out the difference between Jambalaya and Gumbo. I eat Beignets and tell my mom all about New Orleans based off of what I learned in Princess and the Frog.

October: Visit from Older Sister. We visit Motown Museum and I buy the most comfortable sweater of my life. Everyday, sister would say, Oh that looks amazing, I really want it too. I think I am going to go back and buy it. When we go back, she changes her mind. Instead she buys a bunch of who knows what from The Henry Ford gift shop.

November: Visits from both Grandmas and a Grandpa. A’s birthday. Grandma Janmohamed is here for it. We host a party in our humble abode and surprisingly it goes well with 13 kids and half of their parents. Kids get their faces painted and have balloon animals. We go to the Art Museum twice so we can play in the kids family center, and both times it is closed. We become very cultured in the actual art since no choice but to visit and I am shocked at how well the kids do. Thanksgiving brings the Bourgerie grandparents. Amazing food made mostly by my mom. I do make some green beans and a quick bread. We see Coco, but on our way there I spill gasoline all over myself, because apparently I can’t pump gas. My mom tells me she will be sick if she has to sit by me, so I buy myself a Christmas present at the mall in the form of a new outfit. You think by now, I would bring alternate outfits for the whole family.

December: Christmas tree, Hallmark movies, and Frankenmuth- the Christmas town.

Most insane year of our lives, but also filled with a lot of fun times. Merry Christmas