Say My Name

I frequently hear people say that they think I am so strong. They marvel at how I do everything with my kids that I do, and still stay sane. They wonder at how much strength it takes to keep putting one foot in front of the other, when, they say, most people would give up and quit.

I think it’s my name.

I started thinking about this last year during a particularly stressful time with the kids. I'm not trying to be conceited, but honestly, so many places I go, people tell me that they can’t believe how strong I am to deal with all the things I deal with. I always say everyone has a lot to deal with. It’s not just me. I have things to handle that many people do not, but other people have other things, and most people are very strong. But I started to wonder why so many people tell me I’m strong. Then I got to thinking how ironic it is that my name, Carrie, means “strong woman.” I think I was named this particular name for a reason. A reason other than the fact that it was my Grandma's name. A reason even bigger than familial ties.

I have this little theory about names. I think you’re named your name for a reason. Every name has a meaning, and that meaning is an integral part of who you are. The second you are named, you become Someone. Someone with meaning, with purpose, with intent in the world. And I believe every time someone utters your name, it’s a tiny prayer for you. A prayer for you to become even more of who you are meant to be, for you to have the strength to do what you are supposed to do in this world.

During this period of time that was quite challenging with my kids, I drew strength from the thought that every single time anyone has ever spoken, or thought, or whispered my name, it has been a silent prayer for me to be strong. Since my name means “strong woman,” each time my name has been called, it has been a mantra of hope that I will be strong enough to handle the challenges I am given in this life.

I know this is a crazy theory, but what if it is true? And who cares if it’s not, I like it so I’m going with it. It gives me hope when I’m feeling down.

Now everywhere I go, I look for name tags. Name tags on people at the grocery store, the gas station, restaurants, the doctor’s office (which we frequent quite a lot). I look at people’s name tags and I say a tiny, silent prayer into the Universe for them.

“Be with Ebony.” “Thank you for Frank.” “Thank you that Lesa was here today.”

It’s not much. And the people I take a moment for never know I’m doing it. But it gives me a moment of connection to other humans during otherwise mundane life activities (like checking out at the grocery store), when my consciousness would probably be dulled by zoning out with my iPhone otherwise.

To say someone else’s name and offer the gift of silent gratitude that they live in this world with me gives me the feeling that somehow, I’m doing something for the greater good. Every time I say someone else’s name, I offer up a small prayer of hope and thanks for them. And I hope that someone is doing the same for me.

Maybe that’s why I’m “so strong.” I am called, after all, “strong woman." Keep sayin' my name, people. I need all the strength I can get.

Reset Button

Sometimes I want a Reset Button. There are times when every single thing is so messed up and icky and life is just not flowing smoothly, and I think a Reset Button would be very useful. Just push that big button and your life resets itself into a calm, cohesive flow. I wish.

This past weekend was even more terrible than most of our weekends. The kids were completely out of whack. Mood problems, behavior problems, rage problems, anxiety problems, depression problems, sleep problems, sensory problems…it was pretty brutal. I couldn't figure out how to reset everyone. To make matters worse, it was a four day weekend for the kids. So we had two more days than normal to be together and wallow in our Ick. And not only that, three of the kids had been home most of the week before with strep. I think we've had quite enough togetherness. 

I don't know what the problem was for the kids this weekend. All I know was that I was burnt out and down in the dumps. I couldn't see my way out of the Yuck that was our family. I couldn't figure out how to find my Reset Button.

I always hear people say that they never envisioned having children who have special needs. That this didn't match the plans and dreams that they had before they had kids. Before having kids, I never had specific dreams of things like "My son will play baseball" or "My daughter will like to crochet." But I've realized that the dreams and hopes I had for my Someday Family were things like "We will enjoy being together" or "We will do family activities together: trips, games, the zoo, movies, and we will have fun!"

Yeah, not so much. Life hasn't turned out exactly that way. Granted, we do do things together as a family, of course. We take the kids to the zoo, to movies, we occasionally travel. But if I'm honest, it's mostly not so enjoyable. I always think it will be, but it's more stressful and challenging than anything. We keep doing these family things because we think they're important for a family to do. Traveling helps the kids understand the world better. It helps them learn to deal with real life- like how you can't control it if your plane is delayed. Movies give us a sensory experience like no other, and tell stories that we've never dreamt of. The zoo is fantastic! So many fun and new sights, smells, and textures there. 

But I get way more excited about all these things than any of the other 5 people in the family. Well, Ella may be almost as excited as I am for a new adventure. I think our family likes the ideas of all those things, but in reality, the experiences are just hard on too many levels to be fun for them. I hear about how this family we know went on this trip, or some other family went skiing, or whatever. Their pictures look beautiful and sunshiny and happy. I know in reality that every family has its struggles. But it seems like some struggle more, or with different things, than most families. 

Before I had kids, I never dreamt "Our family will have a level of anger that is beyond anger. We'll spend a lot of time in the Rage level of anger! It'll be so fun!" That is the one thing I cannot stand. I don't understand this level of anger, and I have a hard time tolerating it. I didn't grow up around a lot of anger, so having a family of my own that includes several angry individuals is quite a challenge. If I could change one thing about us, that would be it. I always hope that this is something that will change. No matter how many angry moments we have, I always hope for change. 

Don't get me wrong, we have a wonderful, loving, beautiful family. I cherish and adore every person in our home. We have many wonderful experiences, every day, together. I can see that at the heart of each of my children lies a caring, generous, compassionate, kind, beautiful soul. And that is so important to me. But to be honest, this outer layer of anger that some of them have, blegh. It's so hard to live with. It goes beyond normal anger. I wish I could wish it away. I know it's a combination of biological, physical, chemical, and neurological issues for them. I get it. But I hate it. I wish we could spend more time being the wonderful, beautiful people that I know our family is, and less time in the rages.

On day 3 of our 4 day weekend, we had a friend and her son come over for a play date. I was so hoping that my sweet friend would be my Reset Button after such a tough weekend, and she fulfilled that hope. We talked and laughed, teared up a little, complained, shared our experiences over coffee, and then tea, and then grilled cheese sandwiches with the kids. It was just what I needed. My friend rejuvenated my soul and wiped out the yucky feelings I had that were leftovers from the weekend. My dear friend was my Reset Button. 

You have to find your Reset Button, it's so important. You have to find that thing that gets life flowing in a comfortable, peaceful way again after a rough patch. The thing that makes you laugh from your belly again, that lets you breathe again. The thing that lets your spirit soar. Sometimes my Reset Button is a bath (when no small people intrude and giggle at how MOM can even fit in the bathtub! What an unusual and extraordinary sight! Makes me feel like a 3-headed alien.). Sometimes it's writing, or going to the grocery store alone, or art. But other times it's just harder to find that elusive Reset Button to make all things right again. But I found it this week! Ha ha! Mommy wins! My friend was my Reset Button. Thank you, friend. I needed to be Reset.

Cotton-Headed-Ninny-Muggins

I admit it. I'm a cotton-headed-ninny-muggins.

"Elf" is one of my most favorite Christmas movies. It's just silly holiday fun, and it makes me laugh out loud every single time I see it. I love it. And at one point, Buddy the Elf says he's a cotton-headed-ninny-muggins, to which all the other elves gasp in shock. That's a bad Elf word. Never to be uttered aloud. But that's exactly how I feel.

Cotton-headed-ninny-muggins. My brain feels swollen, inflamed, and stuffed with cotton balls. I'm definitely a cotton-headed-ninny-muggins.

I wasn't sure I should write about this because it's not kid-related. And I don't want pity. But I decided it's part of our family's journey and it is what it is. So just promise, no pity. Ok. Read on.

For about 15 years, I haven't felt "right." Little things kept coming up here and there that doctors couldn't explain. Low white blood cell count? Probably cancer. Let's do a million tests, including a bone marrow biopsy. Hm, nope not cancer. Nothing, really. It's just the way I am apparently. And I'll probably get an autoimmune disease in the future, doctors said. Hearing loss? Hm. Weird. Maybe it's genetic, maybe it's from antimalarial medication I took every week as a kid in Africa, who knows. Migraines? Probably just the way I am. Vertigo? MRI's, neurologists, medications, and finally a diagnosis of either it's hormones or it's part of my migraines. I get it with or without the headache part of the migraine. After Ella was born, I suddenly was allergic to everything on God's green Earth. Plants, foods, animals…crazy. Chronic pain in my neck and shoulders? Doctors said it was the stress of caring for my children. And lack of sleep. But lack of sleep they said was also due to stress. Anxiety and panic attacks? Stress. Joint pain was due to inflammation, they said, but why I have inflammation no one could figure out. Stress again, probably.

My point is, I have a million trillion quirky things wrong with me that people my age usually don't have. This list could go on and on and on. I've been on a journey for the last couple years, and finally I see where I've been traveling. I've finally found some answers.

About 2 years ago, a friend of mine found out she had Lyme disease. As we were talking one day, I was saying how I have such chronic, horrible pain all the time in my neck and shoulders. My friend asked if I had ever thought that I might have Lyme disease. I scoffed at that initially, because I hadn't ever been bitten by a tick that I could remember, and I thought it was just the stress of my life affecting me physically.

But my friend planted a seed with that question. And every single day that I wake up alive on this planet, I will thank God for her. Because of that seed, I've gone on quite a journey.

Over the past 2 years, my symptoms grew and intensified. I tried all kinds of natural therapies. PT, OT, chiropractic care, massage. Everything gave me momentary relief from pain but it only lasted maybe 24 hours. Finally the thought sunk in that this isn't how a person my age, who is relatively healthy, should be feeling. When all the kids went to school this year, I really felt it. I didn't have toddlers I was bending over to pick up or put in car seats all day. Why did my back still hurt? The boys all sleep much better since they've been medicated for sleep, and although Ella wakes up frequently at night, her sleeplessness is different than what her brothers experienced. Less intense or something. So I was supposed to be feeling more well-rested instead of groggy and exhausted every day. Why couldn't I remember ANYTHING? I thought I had dementia. Truly. I forget where I'm going sometimes when I'm driving. I forget names. I forget what I went into a room for. I forget everything all the time. Not normal.

I went to a rheumatologist for help with my pain. She diagnosed arthritis in my neck and gave me medication. The meds didn't even touch the pain. She did a blood test for Lyme disease which detected something, but wasn't a definite "positive."

In the meantime I started working with a holistic nutritionist. Through some testing, she said there was some kind of tick poison in my body, but she couldn't diagnose specifically what it was. In October of 2014, she suggested trying a gluten-free diet to see if my intestinal issues improved. Within a week, my daily headaches were gone. My intestinal trouble improved significantly. I felt so much better inside that I decided to stay on the GF diet. 

Then my friend told me about the doctor she was seeing who was treating her Lyme disease. I looked at his website and it said he could treat chronic pain! I thought about having him test me for Lyme disease. But I argued myself out of it, because I wasn't convinced there was anything really wrong with me. I was probably just making it all up. A doctor would probably laugh at me and my crazy symptoms. I talked with my parents about it. They supported me going to this specialized doctor, even though insurance wouldn't cover it. Because who knows, maybe there was something wrong with me that someone could treat.

Over the last year, I remembered that when I was about 8 years old, I had a tick embedded in my belly button while in boarding school in Africa. (Trying to remove that disgusting creature was very traumatic. Ick.) There were enough questions and doubts in my mind that I thought I had at least enough evidence to present to a doctor without being laughed at. I thought at least a doctor would see what led me to believe there might be something wrong with me, even if it ended up to be all in my head. So I booked the appointment.

This doctor has a long waiting list. So I was ecstatic when his office called to say they had a cancellation 2 weeks early! The receptionist laughed at me, because I was so overjoyed. I couldn't wait to see the doctor. 

When I met this amazing person I now call my doctor, I trusted him right away. Not only because he has helped a couple people I know, but also because he obviously knows exactly what he's talking about. He asked me all kinds of strange questions for an hour. I had brought my list of symptoms- two single-spaced typed pages of complaints. Crazy. He asked me about all kinds of things that totally made sense to me, but that no doctor has ever asked in my 15 years of looking for help. He thought it was weird that someone my age was diagnosed with arthritis. He was skeptical that my vertigo is related to migraines. He said I shouldn't have brain fog. He said it's not normal to forget where you're driving, or forget what you're supposed to be doing. 

He didn't laugh at me. He didn't laugh at me. 

So of course, being the cotton-headed-ninny-muggins that I am, I burst into tears. I told the doctor I was just so grateful that he was taking me seriously, that he believed me, that he knew what needed to be done next. I was so relieved that there was actually something wrong with me. I didn't know what, yet, but the doctor knew what to do to find out.

He ordered blood and genetic testing. The lab took 17 tubes of my blood. Whew! I was feeling a little wonky after that appointment. That's a lot of blood. After a couple of weeks, the doctor emailed me the results of most of the testing. First, I have mast cell activation syndrome. The mast cells in my body overreact and make too much histamine. This causes my crazy allergies and is why I get hives for no reason. This can be treated with Singulair.

Next, I have celiac permissive gluten sensitivity. Which means I can never again eat gluten without having my immune system go insane and feeling horribly sick. I can't eat gluten. Ever. I've accidentally eaten it twice in the past couple months, and I get violently ill for three days each time gluten touches my intestines. Ugh.

The reason my arms fall asleep when I'm sleeping is because of thoracic outlet syndrome. The muscles on the sides of my neck are so tight that they cut off circulation to my arms while I'm sleeping. Awesome. Try turning off your alarm clock, or rolling over, when you don't have any upper limbs that work. It would be comical if it wasn't so darn annoying.

I also have two tick-borne illnesses. The doctor said we can't rule out Lyme disease, but there are two other illnesses invading my body for sure. Perfect. 

And, the icing on the cake, I have Chronic Inflammatory Response Syndrome. It's a mold biotoxin illness caused by my genes reacting in a crazy way when I'm in a building that has water damage and mold.

So basically my whole entire body is inflamed from my immune system going bonkers over things that most people can handle just fine. I have the sensitive genes for celiac disease, for the biotoxin illness, for histamine overproduction. The genes plus, and possibly, some sort of significant event that put my immune system at risk (think big stress) have put my body in the perfect position to become very ill. THAT'S why I haven't felt well for 15 years. That stupid, fat, blood-filled tick that decided to gnaw on my belly button 30 years ago probably infected me with at least two lovely illnesses. I'm not an evil-spirited person, but I can honestly say I'm happy he got squished, once he was finally extracted from my flesh.

The great news is that:
1. I'm not crazy. 
2. I'm not lazy.
3. There is treatment for all of these things.
4. Did I mention that I'm not crazy?

I started the treatment for the tick illnesses 2 1/2 weeks ago. The medication causes your symptoms to flare at first, so it was a tough couple of weeks. I think I'm past the worst part now- I have a little more energy at least. I still have most of the other symptoms, but the doctor said that I won't feel great after the tick treatment, because I still have to be treated for the mold illness. We can only treat one at a time. I did a mold test on our home to make sure it's not too moldy for me to live in, and it passed the test so that was a huge relief to me. 

I've been researching these illnesses and trying to wrap my head around all of this for the past month. It's so mind-boggling that you can be so sick and no doctors know how to help you. No tests show what is going on in your body. For 15 years, I've been looking for help and no one has been able to provide it. Isn't that mind-boggling? None of the doctors did the right tests. They didn't test for the right things because the illnesses I have are considered controversial and possibly not even real. Ha! Isn't that funny? There's all this political insanity surrounding these illnesses, like Lyme disease. Insurance doesn't cover the doctors who treat these illnesses because they aren't the standard of care. I'm really beginning to hate that phrase- "standard of care." I've had to go outside the box to find help for my illnesses. I've had to go to a doctor that insurance won't pay for. I've had to endure all kinds of tests and procedures over the past decade- all of which didn't show what was really wrong with me. All of my symptoms are explained by the diagnoses my new favorite doctor has given me. And he didn't just diagnose me willy-nilly. This isn't "voodoo" medicine, as my sweet husband likes to call my out-of-the-box ideas. My diagnoses are based on blood tests! Genetics! Real live things you can see that aren't subject to interpretation. They're real results that tell that I'm really sick. So there. You can take your "standard care" and poop on it, for all I care.

The doctor is hopeful that I am on the path to recovery. He is the only doctor in Illinois who is certified to treat my mold illness based on the medical protocol created by the doctor who discovered the disease. The only doctor in the whole state! That's crazy! The doctor is amazing. I'm thanking my lucky stars that my path has led me to his front door.

So when you see me out and about and I seem a little dazed and confused, now you know why. My brain is full of cotton balls and my body is on fire with inflammation. I look "normal" but trust me, I do not feel normal. This is a recurring theme in my life that apparently I still need to work  on. Remember how my children look "normal" but have invisible special needs? Well now the same applies to me, I guess. Now I can understand them on an even deeper level, so that's the silver lining, right? When you talk to me and I'm confused about what day it is, or don't remember that we talked about something three days ago, just remember my brain is full of cotton balls and my pain level is probably at a 9 out of 10. When I put the milk away in the pantry and the crackers in the fridge, please remember my brain is full of cotton balls. I'm not what I once was. 

I told the doctor I never used to be this dumb. These illnesses take the life out of you. And I'm one of the lucky ones. For some reason I'm not as debilitated as many many other people who have these same diagnoses. So many people are silently suffering- some without even knowing what is going on in their bodies. I'm yet another example of why people shouldn't judge others based on appearance. Sure, my kids and I look "normal," but inside our bodies there are wars being fought. Wars of illnesses, wars of neurological issues, chemical issues, tic and tick issues, sensory issues…

Jonah keeps telling me there is no such thing as "normal." He's very right. We know that, but too many times the world judges based on a perception of what is "normal." Even though I look "normal," now you know why I'm actually a cotton-headed-ninny-muggins. Here's hoping to clear the cotton balls out of my head someday. In the meantime, thank you to Buddy the Elf for perfectly describing how I feel. Here's to being a cotton-headed-ninny-muggins.

The Red Chair

Here's an example of how one of my little darlings struggles with things that most of us seamlessly take for granted and do with ease. We have a beloved Red Chair in our family room. Alex and I bought it when we were just married, and it has been with our family for 14 years. The kids have grown up snuggling in that chair. Eating popcorn and watching movies in that chair. Falling asleep in Daddy or Mommy's arms in that chair. Jumping on the cushions, hurdling over its big arms, taking the cushions off and using it as a boat, putting piggy tails in a little girl's hair as she teeters on the back, sitting sideways and plopping legs over the side, spilling juice and fruit snacks on that chair.

That chair is in shreds at this point. It's embarrassing to have people over because the red chair is such an eye sore. When we look at the chair, we see a decade of loving children in that chair. But through other people's eyes, the chair is tattered and worn. Full of holes and rips. Worn thin.

So we decided it is time to get a replacement. We were still going to keep the chair, but put it in the basement where the boys play their video games. So it can be loved and spilled on even more, away from people's eyes who come to visit.

Yesterday was The Shopping Day To Replace The Red Chair. One of my darlings has been dreading this day as if it were his execution day. You see, this particular darling is slightly rigid in his ways. (I use the word "slightly" sarcastically.) He loves this Red Chair, and most days claims it as his own and kicks anyone else out of it. Literally. He's extremely territorial about this chair. Because he adores it and it is a small, comfy piece of Heaven for him in a frustrating, overwhelming world. Therefore, in his mind, the chair belongs solely to him.

We decided not to go to church yesterday, and have one last day of winter break to all sleep in and relax. I thought the day would go better that way. 

I was wrong. The entire morning, my one certain darling was "off." Very, very off. Swearing, fighting, kicking, crying, raging…pretty much like every other weekend day in our lives, only worse. I couldn't figure out what was going on, what the catalyst for this horrible behavior was. In a moment of desperation, anger, and exhaustion, I yelled at my darling that he couldn't come with us to buy a new chair. He was going to have to stay home because I couldn't bring him out in public with him acting the way he was. If he continued to act this way, he would have to stay home. To which my darling escalated even more.

*sigh* Sometimes I just want an Easy Button.

 I worked with my darling. I wheedled and cajoled and poured out my Mommy Magic on him to the point that he was able to explain that he did not want a replacement piece of furniture. This Red Chair is his favorite. His life. His comfort. Where was he going to sit to watch TV now? If we moved it to the basement, everyone else would want to sit on it and he would never again get the chance to hang out in it. We were getting rid of His Chair, and his life was over.

I kept explaining that we're not getting rid of the chair! We're just moving it to the basement! There will be something new and lovely and comfy for him to sit on to watch TV! No worries! 

But no, in my darling's mind, none of this was relevant to his tremendous concerns about this enormous change in our family. Finally I acquiesced. I had been holding out, trying not to make this certain concession, but I caved because nothing was consoling my darling. I told him, yes I did, that he could have the Red Chair in his room. Temporarily. Until he felt ready to have it moved to the basement.

But even THAT didn't make my darling's tears stop rolling down his forlorn cheeks! Whoa. This was serious. I told my darling that he could come with us to shop, but he was not in charge of making the decision about which piece of furniture we were going to bring home. Daddy and I had to make that decision. (Picture more tears and drama) I told my darling that if he could reign in his behavior and get himself under control, he could come with us. If, however, he had any behavior problems while shopping, we would move him into a private time out area. (More tears. More drama.) I told him if he became inappropriate out in public, we would take him to the car or a quiet area until he was able to get himself under control. (You know the drill. Tears. Drama.)

The rest of us got in the car. And waited for my darling. And waited. I finally came back in the house and bellowed "We're leaving NOW. If you're going to come with us, get in the car NOW." And then I saw what was taking my darling so long. In his hand, he held a small pink scissors. He was cutting a large hunk of string off the Red Chair. He put this tattered string in his pocket, put the scissors down, wiped his tears, and got in the car. 

Sometimes I forget how insightful he can be. He felt like the only way he was going to be able to get through this nightmare called shopping for a new chair, was to bring a piece of his old beloved Red Chair with him. To make sure the Chair knew that my darling was not abandoning it. To make sure my darling could put his icy fingers into his warm coat pocket and feel a piece of his Red Chair even while looking at new furniture. To calm himself down out in public while inside he was grieving.

Sometimes I forget that even on Raging Days, my darling can be so insightful and sensitive and intuitive and wise.

We were able to shop without incident. We found the perfect piece of furniture. It's going to be such a wonderful addition to our big family! It's going to be so cozy and comfy and great for snuggling in. My darling did not need a time out while we were shopping. He was even able to control his tears, once we got to the store. He even had a great time looking at recliners "for the elderly," as he says, that "eject" you out of the seat by raising you up really high.

It's hard to remember that something that is so fun and simple for most of the rest of us- something like shopping for new furniture- can be such a gut-wrenching, torturous experience for other people. I forget that things like this set my darling off. There are things I can count on that will set him off. Things like someone sitting in his Red Chair, for instance. Or having to take a shower. Or not being able to find something. Or having all his "squishy pants" be dirty so he has to wear jeans or khakis. But I did not think about how buying a new piece of furniture would set my darling off. 

Things like this are what make parenting kids with special needs pretty extreme. And very exhausting. I try to think through every possibility in every circumstance and figure out what I will need to adapt so that none of my darlings has a problem. On a car ride, for instance. Is the ride so long that we will need movies? What kind of movies will everyone agree on so that no one gets violent in the back seat? Will we need snacks? Drinks? What kind of snacks and drinks will each kid with SPD need so that they are not angry? So that they will be able to eat and drink and not be hungry or thirsty, because that makes them even more angry? Will we need electronics? Where are the electronics? What kind of electronics will everyone need so they don't go ballistic because they have the wrong kind of gaming thingy? Do we have enough earphones for everyone who will need earphones, or did the dog eat another pair? Do we have noise blocking headphones in case one kid gets so mad at the other kids for making noise that he gets out of control? Will anyone spill or pee in their pants? How much and what kind of extra clothes will we need? Will we be gone long enough to need to bring the next dose of meds for the kids who take meds? Do we have the Epi Pen and Benadryl? Do we have the right shoes- if kids' feet get wet they get irate. Do we have the appropriate weather gear so that each child's temperature is controlled? Because if they're too cold or too hot, they get angry…

Imagine doing this mental workout with every single experience that you have as a family. Completely exhausting. And, silly me, I didn't think that shopping for a new chair would require this kind of mental and physical and family preparation. When will I ever learn? EVERY experience requires this level of extreme preparation. Sometimes I also forget to prepare the kids ahead of time for changes, especially when the changes don't seem that monumental to me. I forget that any change at all is monumental to my darlings. 

Hmm, how nice would an Easy Button be? Just once in a while? 

The new furniture will arrive at the end of next week, and then the Red Chair will move to my darling's room. Which he never even spends time in, by the way, except for sleeping. We keep hoping that getting a computer will help the kids want to spend time in their rooms. Or putting up the Christmas lights they all demanded. Or the outrageously comfy bedding they all have. Or their teddy bears. Or their pet frog. But no. No one wants to hang out in their rooms much at our house. But at least my darling will know that the Red Chair is waiting for him in his room at the end of each day. Ready to welcome him with tattered, shabby, loving arms. At least my darling will have that.

Eye Puzzles

Do you ever feel like you're missing something with your kiddos? Like you haven't found that one important piece of the puzzle, and you're looking all around, under the table, in the puzzle box, in the dog's mouth, and you just can't find that missing piece? And then you wonder if you might be crazy. Maybe the puzzle is supposed to have a blank spot right there. Maybe the puzzle is complete in its incompleteness. Maybe the puzzle is just perfect the way it is, meant to be the way it is. Maybe it's your own problem- maybe you're trying to make the puzzle something it's not supposed to be because of your own control-freak-ness.

I feel like that a lot with my kids. Am I missing something? Or is this as good as everything gets for them? Is there any part of their bodies, minds, souls that I'm forgetting to check that could be a big part of making their lives easier and happier? I'm always on the hunt for something new that I hadn't thought of before. 

This line of thinking led me to our OT, as it often does. We talked about Ben's vision issues, and whether he really was struggling despite the fact that our ophthalmologist said his vision was great. Our OT said she did believe that Ben was telling the truth and there was more to the picture than our ophthalmologist could see. I had our OT do a visual screening on all four kids. She said they all have some issues, and all the issues were different. She recommended two developmental optometrists, who use two different ways of approaching eye-brain problems. 

Ben saw one doctor first. We discovered that of the three skills needed to be able to track when reading, Ben's eyes don't do any of them well. He has several significant eye-brain issues. It's not that Ben can't read. He can. He can read really big words too. The doctor said it's not that Ben needs a bigger vocabulary, it's that he needs help to train his brain and eyes to work better. 

When he reads to himself, his comprehension is at a 4th grade level! When he is read to, his comprehension shoots to a 10th grade level! Good lord, how has he made it this far in school without anyone noticing this huge deficit?? No wonder he fights when he has to read to himself. He omits words, adds words that aren't there, can't keep his place, doesn't know where to look for the next word to read…the doctor said he has figured out how to compensate very well and has coping skills, like talking himself through hard tasks aloud, that the doctor would recommend that Ben learn if he wasn't already doing that. The doctor recommended that anything significant in school must be read aloud to Ben in order for him to really understand it. This includes tests, text books, etc. He said that Ben will always struggle with these issues, but that they can get a little bit better and easier for him to deal with, given the right treatment.

This doctor helps train people's brains to get better at visual skills by doing weekly therapy for as long as is necessary. For Ben it would be at least a year. The doctor is 45 minutes away, and given the other kids, their needs, our crazy schedule, the expense of the therapy that insurance doesn't cover, Ben's lack of compliance with "homework" of any kind including therapy homework…it sounds like a lot to commit to. 

Jonah went to the other developmental optometrist, who uses a different approach to treatment. We found out that he also has significant eye-brain problems. All of this is so foreign to me. I've never even heard of all the issues that the kids have. I had no idea eyes could impact every single thing in your brain and body, emotionally, physically, psychologically. So I probably have a bunch of facts wrong, but I'm doing my best to figure it all out as quickly and thoroughly as I can. I'm also struggling because I'm running into a lot of doctors who, although they are insanely BRILLIANT and GIFTED at their work, have a hard time talking to me in words I can actually understand.

So given all that, my understanding of Jonah is that his eyes are not interpreting the world correctly. Especially when it comes to sensory input. She said Jonah is a "bottom line guy." He gets the main point of things, or one part of the big picture. But he misses everything else. He misses details, scenery, little facts--all the things that make reading, studying, and just plain living, interesting and special and exciting. The doctor said what would really help Jonah is to have prisms put into a pair of glasses. The prisms bend the light rays that enter Jonah's retinas so that his brain interprets the world more easily, and his brain won't have to work so hard to decode information coming in. This will help Jonah not get so overwhelmed all the time, in most situations. It will help him with reading, at school, copying things from the board to paper, riding his bike, just everything. Everything. How did I not know this was going on with the poor guy? Crazy.

Aidan went to see the same doctor Jonah saw. The doctor showed me some of the tests she did on Aidan, so I got to see with my own eyes the evidence of what she saw is happening with him. Again, mind boggling. I don't understand it all yet,  but I know it's real. She said that Aidan's left side of his body is "fragile." It isn't interpreting information correctly. The information from the left side of Aidan's body goes to the right side of his brain. The two sides of his brain get conflicting information, conflicting pictures of what is happening, where he is in space, who is saying something important to him, etc. His brain can't make sense of the two conflicting pictures, so it just decides to shut down and tune the world out! What?!? This describes my Aidan to a tee!! He's so tuned out so much of the time! Now I know why! The doctor said, and demonstrated to me with a pair of temporary glasses, that Aidan needs glasses that are just blank on the right side, and on the left side the background is somehow magnified four times. This will help the two sides of his brain get the same information, the same picture of the world. His brain can then work as a cohesive unit and won't shut down the way it normally does. He'll be able to concentrate better. He'll be able to make more sense of the world, and participate in it more! It's so exciting! How did I not know this was going on with the poor guy?

As an aside, this doctor said that in her humble opinion, Aidan does not have ADHD. I said I totally agree. The doctor said he has visual processing problems, and maybe some other issues also, but those things don't equal ADHD. To which I replied that this is the reason I refuse to put him on ADHD meds. We've tried a host of pills to help him at school, and nothing works, so I'm done. We've lived through the negative side effects and I'm not willing to have my kid on meds that don't help and make other parts of his life worse. So we'll see how the glasses impact him.

I took Ben to this same doctor for a second opinion, and to see how she would treat his eye-brain problems. I didn't tell her what the first doctor had said, because I wanted to see what she would come up with and then decide which doctor, and which treatment, I wanted to pursue. The doctor said there were many problems going on with Ben's eyes and brain. They aren't working the way they are supposed to when Ben is reading or studying or just looking around, living in the world. The doctor said that Ben would benefit from special glasses also. He is more complicated than the other kiddos, so I'm not really sure what's going to be in his glasses to help him interpret the world. 

But I do know this. The doctor gave Ben a book and asked him to read a passage. Ben held the book close to his face and slowly struggled with the words. The doctor stopped Ben, and put some special glasses on him. She asked him to read some more. Ben held the book at a normal distance away from his face. And then he completely lit up like I have never seen him before. He yelped "I CAN SEE IT!!" His whole body was taken over by joy, by ease, by excitement. I got all teary while I savored this life-changing moment, just watching him experience this for the first time ever. I couldn't believe it. I just couldn't believe it. How did I not know this was going on with the poor guy?

We decided we'll try the glasses before looking into vision therapy. It just makes sense at this point, and like I said to the optometrist, Ben has to work so hard at so many things in life. It would be such a gift to be able to give him something to make his life easier. Just put these glasses on your sweet face, and kapow! The world becomes a clearer place. A place that makes more sense. A place he can understand just a little bit better. No therapy, right now at least. No vision exercises for homework. No frustration for once. Just kapow. It's better. The doctor said he may need vision therapy down the road, but right now this is a good starting point.

Then there is little Miss Ella. Our OT said that when Ella's eyes were tracking, they were having little tremors. So I thought we should have the developmental optometrist take a peek at her peepers too. As long as we're spending a gazillion dollars on all her brothers, because insurance doesn't cover all these incredible things that they really, truly need, we might as well make sure Ella's eyes and brain are ok too. 

Well guess what. Her eyes and brain are not ok. Go figure. The doctor did all sorts of tests. Then, with her data and test results in front of her, she asked my tiny girl in that big chair if when she reads, the words sometimes float off the line. 

Uh, what now?? 

And then, get this, Ella calmly nodded. Um, what now??

The doctor asked if Ella had ever told Mommy and Daddy that this happened. She said no. The doctor said she has never had a child say yes to that question. I guess kids just assume that this is how it's supposed to look when you read. The doctor asked Ella to look at a page of words and point to one that was floating. She did. Then the doctor had Ella try on a whole bunch of lenses and do some more tests. When the doctor was satisfied with the lens combination, she asked Ella if the word was still floating. She said no! The doctor explained that the centers of Ella's eyes and peripheral vision are not linking up. So they're not working as a unit to interpret information. So words float when she reads. What?!? How did I not know this was going on with the poor girl? 

The doctor explained a whole bunch of information about reflexes and chemistry and other stuff, but the basic, important thing is that these glasses will help Ella in every area of her life. The gross motor and fine motor skills she has a history of struggling with will be easier for her to master. Her speech delays could improve. Her sensory processing disorder may change or improve. And reading will be so much easier. My little girl has such a fire for learning, I couldn't believe that she has been struggling so much and we didn't even know. She loves reading, she loves writing, she's constantly (CONSTANTLY) asking me how to spell words, or "what does this spell" as she recites the letters of a word she sees. It's no wonder some kids lose that passion for learning if they have issues like my kids have with their eyes and brains. If the world is such a difficult place to interpret, and you don't know how to tell anyone you need help because you don't know you need help, it's no wonder kids -my kids- are frustrated, moody, irritable, aggravated, irrational, anxious, and tuned out much of the time. 

So no, I didn't even know this was an area that I should make sure my kids weren't struggling with. I would never have known that "developmental optometry" was a thing, unless our blessed OT had told me. And given me references. And held my hand as we went down yet another new path. But at least we know now. I feel so badly that Ben and Jonah have struggled for 12 years with their eye-brain problems. I feel so badly that Aidan has struggled for 9 years and Ella for 5. 

BUT. We found out now. This is the end of that struggle for them. From now on, we have doctors to help us. We have glasses and maybe therapy to help us. I know this is an area we have to monitor and check up on, so now it's on my radar. My kiddos' lives will be easier, at least in the eye-brain department, from now on! Well, from next week on, for Ben and Ella. Their glasses will take a week to arrive, so you can imagine how many zillions of times they have asked me every single day when their glasses will be here. 

We found out now. And I'm sorry I didn't now to find out earlier, but I have to keep reminding myself, we found out now. If you don't know something, you don't even know that you don't know it. I didn't know I should be checking eyes and brains. It's not "standard care." Had it not been for our OT, I still wouldn't know and my kids would all still be struggling. Thank you again, Laurie. Thank you again.

So we'll see how it all goes. I've noticed since Jonah got his glasses a couple of weeks ago, that he does have fewer frustrated meltdowns- the kind that used to involve laying on the floor kicking and screaming. That is a huge improvement. Since Aidan got his glasses, he makes eye contact more often!!! He looks between people who are having a conversation!!! Yes, he's still tuned out, or tuned in to Minecraft much of the time, but there are improvements. Today is the first school day that Aidan has his glasses, so I'm anxious to see how things go there. It's a work in progress. But at least I feel like I FOUND one of my missing puzzle pieces! Times four! I feel ecstatic and joyful about that. I did it! I found it! Sometimes it pays to keep searching. To never rest, to always be thinking outside the box of "normal." Just in case that puzzle piece is outside the box.