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Friday, December 4, 2015


A very wise friend of mine told me a quote this week: "A person's greatest strength is their vulnerability." I thought I'll have to mull that one over for a bit to really figure it out. But I also thought, well, I've got vulnerability covered because I put my stories out into the world without filter, letting people see into my life in a very vulnerable way. Ha. Got that covered.

Then my week hit me hard.

Ella and Aidan have been struggling with school anxiety big time. Aidan's teacher hadn't been following his 504 Plan up until two weeks ago when we found out about this. I would email every couple of days about problems, and the teacher would say Aidan needed to learn that skill independently. I was very frustrated. Aidan was very frustrated. I couldn't understand what the problem was, given the fact that he is supposed to get accomodations at school. Why was I hitting a brick wall? Now I get it- the 504 wasn't being followed. Like, at all. we have it back in gear. The teacher is making accomodations. Like he was supposed to three months ago. Now Aidan gets help filling out his assignment notebook. Now he gets help putting homework into his backpack. Now he has his assignments modified. 

Now it's a little too late. The damage has been done. I think it can be reversed, but it's a struggle. Aidan feels completely overwhelmed by all things school. He doesn't trust that he will be able to manage school. He doesn't trust that he will get the help he needs. He doesn't trust that he will succeed, because he doesn't trust he will get support.


So now we're dealing with more school anxiety than ever before with Aidan. Just off and on, not every day, so that's good. But when Anxiety hits, it bowls me over. It crushes me, from body to soul.

Last week, Aidan had an Anxiety Day. He woke up ok. I thought the day would go normally. Then he started in with "I am NOT going to school." He started freaking out. He started screaming, and didn't stop for 45 minutes. He locked himself in the bathroom, crying and screaming that he wasn't going to school. I decided that day to see what would happen if I really pushed him as hard as I could. Partly because people think it's my fault when my kids don't get to school. Partly because I'm tired of being judged- by people at school meetings, by people in the world- because I can't force my kids to do things. So I decided to push hard that day.

When it was time for the bus, I picked all 65 pounds of Aidan up and carried him out the door, kicking, crying, screaming loud enough to wake up the entire county. He refused to put on his coat. He fought when I put it on him and ripped it off. I  carried him to the front porch in his pants and t-shirt. No shoes, no warm clothes. I was pushing him hard. I held him, flailing and fighting for ten minutes, waiting for the bus in the cold. I wasn't dressed for the winter morning, either. My body ached and throbbed, because it always hurts, but having a 65 lb screaming, flailing, fighting blob in your arms makes a body hurt almost more than it can bear. 

The neighbors showed up at the bus stop, which is our driveway. They politely looked the other way as I fought to hang on to Aidan. The bus arrived. I carried my out-of-control blob to the bus. I put him on the bus steps. He fought, he screamed, he wailed, he wept. I physically could not get him any farther into the bus. I tried for a minute. I tried as hard as my hurting body could. Finally, I threw Aidan's backpack down on the ground as hard as I could, said a bad swear word, and gave up. Aidan bolted into the house. I ran in after him, sobbing myself. In front of all my neighbors.

Not a stellar Mommy Moment.

Now we come to Miss Ella. She has had anxiety about school and leaving me forever. For. Ev. Er. But it never gets better, no matter what we do. Now her sensory processing issues are kicking up. Over the past month she has had increasing problems handling all of her senses and the input the world gives them. Food is challenging. Noises set her off. But the very worst thing is tactile- her skin is not playing nice. Clothes are driving her literally insane. I will not let her out into the winter without some sort of leg covering. I know, I'm a horrible, mean Mama. So we have tried every single type of pant I can find. Nothing is comfortable. They have to be tight at the top, long enough, high enough on her waist, and soft and stretchy. Yeah, right. She's the width of a string bean, and tallish. So right there is the first problem. To get pants that fit her length, they end up being big around her teeny tummy. Not acceptable. All my attempted "pants-fix-its" are unacceptable to her also. 

The other problem is Ella's current tic. She has the one back that she had over the summer, where she has to do a tummy clench-and-roll kind of thing. This tic makes her pants fall down from where she likes them to be, and that makes her crazy.

Yesterday, Ella was in tears about going to school. Everything set her off, mostly her stupid pants. I think she tried on every single pair she owns. Nothing worked. After trying his hand at helping Ella, Alex exclaimed "She wants PANTS that go up to her ARMPITS! There IS no such thing!!!" Finally I said that's enough. You're just going to have to wear what you have on. The end. 

She wasn't happy with me. I have had to put her on the bus "the hard way" many many times this year. Yesterday included. She wouldn't get on, so I had to throw the mail that I was holding on the ground to lift her past a friend and into her seat. While she sobbed the whole time. I climbed down the bus stairs to my posse of neighor Mamas. Boy, have they seen an eyeful from us this year. I wanted to jet into the house because I was so embarrassed and sad and overwhelmed. But my sweet neighbor Mamas gathered around me. They hugged me. They said they wouldn't be able to handle what I handle. They said I'm a saint. They said I'm doing such a good job. They said to never worry about what they are thinking about us. They said not to be embarrassed.

And I just cried. And cried. And cried some more. 

Because not only had Ella been a handful that morning, but of course the older boys had their own overwhelming issues. And I didn't feel well at all. And I don't know how much more of life I can take.

I got the older boys on their bus. I took a shower. I went to the chiropractor. Who is so sweet and nurturing that I started to cry again. She said such kind, loving words to me too. She said my kids chose me to be their Mama, and even when I feel like I'm doing a terrible job, they see my love for them. They see how I get up EVERY morning, even though I don't want to, and I'm there for them. She said I was chosen for this. She said I can handle this. I mouthed- because I was crying too hard- that I don't think I can handle it. She said YES I can. I do! I get up and I do it every day.

So by that point my whole face was so swollen I looked like I had been punched. Which is what I felt like also. So that was nice.

I was supposed to meet a friend for brunch. I texted ahead and warned her I'd been crying all morning and I looked like an alien because of my puffy eyes, and not to be alarmed. She must have thought I was a complete loon, but she didn't run in horror when she saw me. She didn't even run when I cried more while we ate and talked. She cheered me on, and she cheered me up. 

AND, she's completely brilliant. She suggested getting Ella OVERALLS to try to combat her problem with the waists of pants!! Duh! Why didn't I think of that? Of course no store in the area sells overalls for 6 year old girls, so I had to order some online. Knowing my luck, there will be something else "wrong" with overalls, in Ella's opinion. But it's worth a try. I talked with her yesterday about it and tried to really make it sound exciting! 

We'll see. I'm not holding my breath. That kid's nervous system can make anything into a sensory problem.

As I spent the day going from appointment to appointment, composing myself in between and then totally falling apart when faced with the wonderful people in my life, I thought a lot. I wondered why I have days like this now where I just cry. All the live long day. What the heck is my problem? I decided it's because the people in my life are too darn nice. It's their faulth.

I thought about how a few years ago, I didn't have this support system of friends who really "get" what my life is like, or even medical people who really understand. I was just little old me, trying to take on the world and get my kids through it as best I could. Now I have an amazing support system set up, so that everywhere I go, everything I do, I'm surrounded by kind, loving, compassionate, understanding, supportive people. Even the people in my life who live far away- when they get in touch, it's always to support and love me. When I get my nails done, or see a friend at the grocery store, or take the kids to therapy, I'm in contact with people who support me. And because I feel their love and generous kindness, it makes me feel weak. It makes me feel vulnerable. It makes me cry on my tough days. It makes me unable to hide my sorrow and overwhelm.

I thought I was Queen of Vulnerability, writing about my children and our lives, letting people in to see they are not alone in their daily Crazy. But I realized yesterday that because I have a strong, beautiful, caring support system, my soul knows it can be even more vulnerable. My soul is taking me to the next level. I simply cannot fake that I'm ok anymore. Sometimes I really try hard to make sure people get the impression that I'm fine, kids are fine, we're all fine. Usually, though, on really tough days, I can't hold it in because the sorrow and weight is just too much to bear on my own. So I go about my business of the day- meeting friends, grocery shopping, having medical appointments- and just cry as I go. I have learned to keep tissues stashed everywhere.

I really, truly hate this about myself. I hate that there are times when I can't fake it. When I can't just put a smile on and do life. I hate that sometimes it's really so hard that I just can't manage to go on gracefully. I hate that there are times when my sadness betrays me and I have to let people in. I learned from a young age to deal with my emotions on my own, and not rely on other people for help too much, and I hate it when other people see what I'm really struggling with. I hate it when my soul decides to let my emotions out of my body for the entire universe to see. Darn soul.

As I processed all of this yesterday, I came to terms with the fact that although I consider myself to be an open book, I'm not as vulnerable as I could be. I don't like letting people in. When I have days like yesterday that are so hard that I can't maintain composure, I think it's because I'm practicing being vulnerable. My Soul Lesson for the moment is to learn to be comfortable with being vulnerable. 

I decided to try to become ok with that uncomfortable, foreign feeling of being vulnerable. I don't know if it really is a great strength to go around crying all day long every time you run into a compassionate face, but I know that I am supposed to learn the lesson of vulnerability. It's hard and seriously uncomfortable. It's not a place I like to visit. I have a hard time asking for help, and letting other people then help me. It makes me want to crawl out of my skin when I'm so open and vulnerable that anyone looking at my puffy eyes can tell I'm struggling. But there are just some days when I can't keep it in anymore, no matter what I do. It makes me feel ridiculous. But it is what it is.

Every day I hope I'm growing as a person, as a soul visiting this Earth. I realize I am a work in progress. I'm not a saint. I'm not perfect. Some days all I can do is weep because of the overwhelming-ness of everything that is on my shoulders. I do believe my children and I chose each other. I do believe I will get through this and carry on- bad days or good. But maybe this whole crying thing is happening so that I learn to ask for help, and more importantly, accept help from my circle of beautiful friends. It sucks to be vulnerable. But I'm working on it.

Being vulnerable is your greatest strength. I'm working on it.

Monday, November 30, 2015

Hope and Courage

The reason I felt compelled to start a blog was for two reasons: I wanted to put out in the world who I authentically was, my real self. And I wanted families to know they are not alone in their struggles.

Every Christmas season, I would send our Christmas cards to friends and family far and wide. My glowing children would be beaming on the front of a picture-perfect card, sending merry wishes and holiday hopes. This one snap shot of our life was not accurate, and I felt like I was perpetrating a cover up about what our insane life is really like on a daily basis. Yes, once in a while, our life is picture-perfect. For one millisecond here or there. For instance, last night Ben and Jonah were doing their funniest Michael Jackson impressions, with a "Ben and Jonah twist." It was hilarious. I couldn't stop cracking up. They were doing this as Ella was carefully putting her last ornament on the tree. Ella, who begged to dye the tips of her hair pink yesterday (To be like an American Girl doll she adores. Of course I couldn't refuse because how cute is that?) and looked so beautiful, thoughtfully hanging her last ornament. But most of the time it is fly-by-the-seat-of-our-pants-total-chaos. I love holiday cards for the same reason I love Facebook: You can see a snapshot of what life might be like if you lived in a movie. These aren't real life moments, these are "What We Could Be Like If Everyone Cooperated And Took A Shower And Smiled At Exactly The Same Time And Didn't Try To Kill Each Other For A Split Second" pictures of our lives.

When I was young, we lived in Africa. In pretty much the bush of Africa. I grew up with extreme poverty all around me. While I had all of my needs met, African children all around me did not always have their basic needs provided for. I have always felt a sort of world consciousness. I remember being very young and crying myself to sleep many nights because I felt the weight of the world's grief and need on my shoulders. I could feel the sorrow, the unfairness, the need of those less fortunate. I still feel that weight. As idealistic and naive as it sounds, I wish I could help the entire world fix all our problems. Hunger, poverty, violence, war, loss, illness...I wish I could fix it all. I often feel powerless and insignificant in such a big, needy world. What can I do alone? Silly naive me, I can't fix the world's hurts.

But what if I could? Just one person at a time, just little by little. I won't be able to fix all the world's wounds, but I can always strive to help in any way I can. I was reminded of this over the weekend.

We have several family members who are very ill. One of these family members reached out to me, and I was so honored and humbled to be someone that she wanted to support her. There isn't much I can do to actually help her, except just keep letting her know I understand a smidgen of what she is going through. And that I am always here for her. And how I love her. And remind her how many many people all around the world are sending their healing energy and love to her family.

I started thinking about all the people who have reached out to me from far and wide since I started my blog. It's pretty incredible! I am constantly amazed, humbled, and honored to be able to share our story with people just so that they know they are not alone in their struggles. Just so they know that you can hang on to hope even in the darkest times. Old friends, new friends, people I haven't seen or spoken to in 30 years, people I saw yesterday--they all have a yearning to connect and to know they are not alone in this Crazy we call life. If I can make even just one person feel a small bit more understood or comfortable, I'm changing the world. I am always taken aback when someone says they read my blog, or were touched by what I wrote, or the same thing happened to them. I am honored and humbled. And I just feel love. I know, naive and idealistic. But that's just me. It's the way I've always been and will be until I'm a hundred and two. (I may become bitter and grumpy when I reach 103. Just warning you all.) 

When you reach out to me, it takes courage. And it helps me remember I am not alone either. My soul feels the worries of those around me who struggle, and those far away in third world countries who struggle. But my heart feels enormous bursts of love and gratitude for everyone who touches my life. I am thankful and blessed by every single person who crosses my path each day.

A friend remarked the other day "You just love everyone, don't you?" I stopped for a second to consider, because I never thought about that before. But then I said yes! Yes I do! Ok, some people irritate the crap out of me, I admit it. Putzy drivers, mean people, people who don't understand my kids, ventriloquists...but most everyone else I do love. The world needs more love.

Alex bought me a sweater this weekend that says "Let your love shine." That is totally my motto. When I saw that sweater, I knew I'd just have to wear it every day for the rest of my life. When I'm 104, you can bury me in it. It'll be threadbare, but that's ok. 

In my old age, I've realized it's ok to be who I am. It's ok to be idealistic and naive. Because isn't the world better served by love than by cynicism? I never told anyone that I used to cry because I can physically feel the sadness of the world. I haven't told anyone that sometimes I cry because I can feel the fear and stress of family members and friends who are sick, or struggling with special needs, or scared, or suffering. I know my tears don't do anything to help anyone. But with my tears come silent prayers for healing, wholeness, love, peace. Peace for the mamas I know who are struggling in so many ways. Peace for little ones who are sick or have disabilities. My tears and prayers are a deep yearning for healing in the world. 

Sometimes all I can do is be here for someone. To let them know I understand, and they are not alone. Sometimes all I can do is hold them in my heart and love them. Tragedy happens to us all, it happens every day all around the world. But you can't be defined by tragedy. You must be defined by the hope and courage that carry you through the tragedy. Sometimes hope and courage come easy. Other times you have to claw and cling to any shred of hope and courage you can find, and fight with all your might to hang on. But at least you're still hanging on. It may not be pretty and Christmas-card-worthy, but you're hanging on to hope and courage however you can, and that's what is important.

Here's to being naive and idealistic and loving everyone and healing the world one small act of kindness at a time. It's just the way I roll. 

At least until I'm 102.

Wednesday, November 11, 2015

"Ella & Arnold"

I love kids. They are so perfectly, endearingly fresh and funny and adorable. I just want to squeeze them and make them feel how much I adore them.

Last week was my sweet hubby's birthday. He had to work all night the night before his birthday, got three hours of sleep, then worked all day from home. What a way to start a new year. I had an insane day. Yes, part of it was awesome- I got my hair done, which is a major production these days since my darlings are giving me more and more grays. AND since my hair has finally stopped falling out (For the past three months it fell out in clumps because of my tick and mold illnesses. My doctor assured me it was just a phase and it would end and I would not go bald. I seriously doubted him for a while.), now I have all these funky fuzzies that my hair artist (she is truly gifted) had to figure out how to deal with. We decided on bangs to hide the funky fuzzies. So anyway, that was a great appointment, but takes quite a bit of my day.

Then I had to pick up Ella and Ben a little early from school and take them to get their orthotics fitted. When we got there, the doctor asked if the kids had gotten their new shoes. Um, no...he said the orthotics wouldn't fit in their current shoes because they were almost too small as it is. SO, we dashed just around the corner to Target and hustled little, and not-so-little, feet into shoes as quickly as we could so we could go back to the doctor and still get the orthotics fitted. It was pretty comical. I've never seen Ella and Ben run so fast. They got new shoes- completely unexpected and totally exciting- and new orthotics. They knew they had to hustle!

We got home just in time for me to switch out kids and take Jonah to OT. Ella had a meltdown. In true Ella fashion, she cried and freaked out because she couldn't decide if she wanted to stay home with Daddy and go to swimming lessons, or come with Mama and be bored at Jonah's appointment. Finally I convinced her to stay home. 

After Jonah's appointment, we came home to find only Ella, and not Aidan, ready for swimming lessons, and still in the driveway, when they should have already been at the fitness center. Argh! Alex was exhausted, but willing to cart Ella to her lesson. 

Ben has a Thing about birthdays. Especially family ones. He MUST go to a store and pick out a card for the Birthday Person, a small present, wrapping materials, and possibly their favorite candy. Every time there's a family birthday, I forget Ben's Birthday Thing. And always, always, the day of the birthday, Ben freaks out because he hasn't gotten his Thing for the birthday person. And always, we're running to Walgreens at a very inconvenient time to satisfy Ben and his generous need to get a Birthday Thing. He is so thoughtful and kind. I love that he HAS to get something for the birthday person. So after Ella and Dad left for swimming, I took Ben to Walgreens to get his special things for Dad. He goes through all the aisles, looking for the perfect card, the perfect gift, the perfect wrapping paper. And the perfect 3 Musketeers Bar- because that's Dad's favorite. Ben has a little OCD, in case you weren't aware (I say 'little' sarcastically), so this process takes quite a bit of time. Each candy bar must be carefully inspected to make sure it is up to Ben's standards of quality. Most are not. 

Eventually, we made it home. I felt sorry for Alex, having had to work so much the day and night before his birthday, and then also on his birthday. I firmly believe in Birthday Magic. No matter how old you are, birthdays should have at least some brief moments of magic. So Ben and I scurried around to make the house- that was FAR from magical- clean, make frosting, frost and candle the cake, wrap presents, and sign cards in the 15 minutes before Dad and Ella got home from swimming lessons. During this frantic race for Birthday Magic, I called to Aidan who was upstairs on the computer. Playing Minecraft. As usual. I told him Daddy would be home in 10 minutes and he needed to come downstairs and help us get ready! His fingers flew off the computer and he got downstairs faster than he's ever stopped a game. He asked if Daddy was home. Nope, 10 minutes. He exclaimed "OK! I'm going to HIDE!"

I don't know what my childrens' fascination with hiding is. They've always loved hiding gifts, goodies, treats, people...I think they love discovering unexpected goodness. The morning after Halloween, Ella strangely went downstairs all by herself. I thought for sure she'd be down there stuffing her face with candy, so I went down shortly after I heard her shuffling around. I found a trail of lollipops all the way from the front door half way around the whole first floor. Ella looked at me sheepishly as I caught her with her hand inside the cereal box. She grinned and explained that she was hiding treasures all around so that when people found them they would be surprised and happy! She put one in the fridge. I found a treasure on top of the toilet. I found another one in that box of cereal two days later- when I had forgotten Ella had done this and when the next kiddo wanted Cheerios. It did make me surprised and happy! I remembered the joy with which Ella hid all her tiny treasures to make us all happy. I keep finding them in odd places, even weeks later. Love that kid.

So Aidan was hiding for Daddy. After about 3 minutes, I hear a muffled "Is he here yet?" Nope. 7 more minutes. Aidan decided he couldn't stay hidden for that length of time, so he popped back out. He proceeded to spend the next 9 minutes- because Daddy was late- rushing around from room to room, watching to see if the passing cars were Daddy's car. He would yell "I SEE ONE! I SEE ONE! IT MIGHT BE DAD.....nope. it's not dad....I SEE ONE! I SEE ONE!!" Cracked me up. 

Finally it was Dad's car, and Aidan flew to hide in another room. As Daddy and Ella came in the house, Aidan blew open the door to the room he had been hiding in and yelled "Happy Birthday, Daddy!!!" Now that was Birthday Magic.

We sang and lit candles. We had cake and presents and cards. When I say "we" had presents, I mean Ella opened them all as Alex supervised. It was a fun way to end our crazy day. Birthday Magic was achieved.

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The other night I was driving the Mama Taxi around with Aidan and Ella after therapies. They were happily chatting in the backseat. I was thinking about a million Mama Things. Slowly, my attention was drawn to what my little ones were talking about. I realized Aidan had an old phone out. He had it turned so he was recording his sister and himself. He was doing his best Arnold Schwarzenegger impression. Ella was doing her best Ella impression. It was another episode of "The Ella and Arnold Show." Aidan loves to talk like Arnold. He repeats all these lines from movies, and then inserts his own comments in Arnold Speak. It's so hilarious to hear this skinny little boy talking like a big strong macho Austrian man.

Ella and Aidan have these moments where they 'find' each other again. When they were little and Aidan would go to preschool, he would come home in the afternoon and he and Ella would play together for hours. They have always gotten along so well. They crack each other up; they have the same sense of humor. Ella can play "boy" games with the best of them, and Aidan is intrigued with "girl" games. They make the cutest pair. 

As they have gotten older, Aidan and Ella spend less time together. They have their own friends, their own interests, their own activities. Which is a good thing, part of getting older. But once in a while, they 'find' each other again, and it's so fun for me to listen to them when that happens. They are like two little peas in a pod, laughing and hooting and carrying on like wild children. They get into their own little world where nothing else matters except the two of them. Love it.

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The other day before school, I said something and Jonah responded "Mom! That's assititis!" 

Um, what now??

He said "You know, assititis, like you said yesterday."

Ohhhh, asinine. He had been talking about something and I had replied that it was asinine!!

"Assititis" cracked me up all day, every time I thought about it. What cracked me up even more was then Alex, Ben and Jonah and I kept thinking of more hilarious words. Like if you fart and poop, it's a pooart. And a sneeze and a tinkle is a sninkle. The boys are usually in pretty cranky, irritable, angry moods in the mornings before school, due to the anxiety they feel about the impending day. But that morning was awesome. I had them rolling on the floor with my funny word combos before they hit the bus. It was great to see them laughing together and having fun.

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"Don't put a worm on the table!" are the words that came out of my mouth the other day when Ella found a pet worm in the backyard. It was another afternoon where Ella and Aidan had 'found' each other and were fully entranced with finding wildlife in the backyard. They both love rocks, and they often bring in handfuls from outside. They present their dirty, cold rocks to me with sticky open hands, their chests puffed with pride at the bounty of their treasures. So I'm accustomed to the kitchen being filled with dirt and rocks and pebbles, leaves, grass, etc, after my darlings have been excavating outside. But I draw the line at worms. And other backyard critters that belong underground. If you have a container for said worm, fine. You may keep it as a pet and feed it grass and hope it lives while you examine it with wonder before freeing it back into the garden. But please don't put it on my kitchen table! I assumed this rule was quite understood, but Ella sincerely was confused as to why I didn't want worms on the table! Apparently I have not been crystal clear about Worm Rules. We revisited the rules about backyard critters having to be contained before bringing them into the house. Filthy rocks, fine. Backyard critters- they need containers.

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My twins have always been cuddlebugs. The first time I saw them snuggling together, they were days old, in Ben's NICU incubator. The nurses said that they weren't doing well, so they put the little boys together so they could draw comfort from each other. The boys each had cords and tubes and bands and wires attached to them, so the nurses had to carefully organize all of that for two babies to snuggle. It was pretty funny, because after a while of snuggling and gaining strength from each other, Ben started hollering. His little body went straight and tense and he screamed. Jonah looked around as if to say "Really? I come over here to hug and snuggle you, and you're yelling at me?? See what I've had to put up with all my life?"

When we brought our micro-preemies home from the NICU, they slept together in one crib. As babies, the boys often spent time in one crib together. As little boys, I would find Ben and Jonah snuggled in one of their toddler beds together. Not only did they spend most waking moments in each other's presence, they also sought out their brother in moments when they needed comfort or amusement. Alex and I always have said it's too bad Ella and Aidan don't have a twin. Having a twin is a beautiful thing.

Periodically as the boys have gotten older, they still snuggle. I'll come downstairs in the morning and find both boys squished into the corner of the couch, snuggled up, watching TV together. They always have this look like it's completely natural to be squished up, side by side. Like this is the way life is supposed to be. And for them, it is. They have been together since the moment they came into existence. 

Now that the boys are teenagers, you might think they would be less willing to snuggle with each other. And while they do spend most of their days apart, there are times when they still need that physical twin bond. The other night, Alex was putting Jonah back to bed in the middle of the night. Jonah said "I need Ben. I just want a Ben Hug." They sometimes will snuggle in one of their beds before they get up for school. It's the sweetest thing to hear them say "Goodnight, Jonah. Love you." "Goodnight, Ben. Love you too." Yes, they can be each other's very worst enemies. But they also have this bond that will never be broken because they were given life at the very same time. Being a witness to their miracle of twin-ness is a beautiful thing. 

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Kids. Aren't they funny? So precious, fragile, their childhood so fleeting. I love these little things that make them so endearing.                                           


"Let It Go"

This week, our kids have learned the word "concussion" and what that means. Ella was playing at a friend's house, when a swing bashed her in the head. She had a HUGE HUGE bump on her forehead, a small bump on the side of her forehead, and a scrape on the bridge of her nose. She was inconsolable. I worried about a concussion. I put ice on her head and made her lay with me and be still. She wanted to play with friends again after she recovered a little bit. I invited her friends in to play with Ella, and made Ella lie down while they played. At dinner that night, I noticed Ella's pupils were very dilated. I wondered again about a concussion. But I had heard that if you have a concussion, the things to worry about are passing out, vomiting, or sleeping too much. And acting very weird. Ella wasn't doing any of those things, so I just watched her very closely, like I thought you were supposed to do. I checked on her frequently that night. She had a headache for a couple days, and was extremely emotional and anxious. She cried for like 3 days straight. She's always emotional, but wow, this was bad. The next day her pupils were still dilated, and she was a sobbing mess. But I thought since she was overall physically ok, I should make her go to school. It completely broke my heart to peel her body off of mine and stick her on the bus, tears rolling down her sweet little cheeks. I thought that was what I was supposed to do. 

I was totally eaten alive by guilt for the next week because of that decision. 

The teacher emailed me to let me know Ella was doing ok that day, although she was more emotional than ever. The social worker also checked on her.

Ella had OT for her reflex integration. The therapist made a comment that Ella's eyes were dilated. I said I know! Do you think that's a sign of a concussion? She said she would call the doctor to be sure. I called on my way out of her office, and by the time we got home, I had an appointment for Ella right away. We zipped over to the doctor's office. I was worried. The doctor did an extremely thorough check of Ella from head to toe, inside her eyeballs, how she moved, etc. He asked a million questions. And then confirmed that yes, she does have a concussion. He explained that the first 48 hours are the most critical after getting a concussion, and that you shouldn't do any physical or brain activity during that time in case you have hemorrhaging in your brain. I had sent Ella to swimming lessons and school, and her brain could have bled into her spinal column. Ohh, the Mommy Guilt.

The doctor said Ella couldn't go to school until she was doing better. No sports until she has had two headache-free days. Limited brain activity- not too much TV, electronics of any kind, reading, singing, art...pretty much she is supposed to lay down and just breathe until she feels better.

I now recognized that Ella's spike in emotionality and anxiety had been due to her brain being jiggled around in her skull. I felt terrible about how I had made her go to school. I know, I didn't know any better and thought I was doing the right thing, but that doesn't matter when you're in the midst of a Mommy Guilt Episode. I felt like someone had punched me in the stomach and twisted my heart until I couldn't breathe. Our OT said that it was actually me who figured out Ella had a concussion, because if I hadn't noticed her pupils, I wouldn't have known this was something abnormal for Ella when the OT commented on them. She made me feel a little better. But not totally. Because Mommy Guilt is so overwhelmingly powerful. And when you could have caused harm to your child because of your own ignorance, ouch. It still stings.

There have been changes in Ella since her concussion last week. She is afraid to walk down the sidewalk to a friend's house. She used to do that all the time without giving it a second thought. She is even more afraid of going to school, of being away from me. She cries every night about having to go to school the next day. She can't make decisions. She says she wants to do something but she doesn't want to do something. She can't make up her mind about anything. 

But now that I know that this is all symptoms of a concussion, I'm much more prepared to deal with it, and much more patient. I know nothing I say will heal Ella's anxiety about school. So I just hug her and hold her tight and tell her that I promise everything will start to get better and be ok. 

Jonah is so intuitive. He said the other night that he thinks the reason Ella cries so much about leaving me is that she is afraid of being hurt. She feels like I can protect her from all the bad things in the world. She feels like she needs me in order to be safe. That's why she wants to be with me all the time.

Wow. This kid. He is amazing. So sensitive and brilliant. I said yes, I was thinking the same thing about Ella. I told Jonah how smart and intuitive he is. How much I love him and admire him for the person he is. He has such compassion for those around him who are hurting.

This week, Ella stayed home one day from school. Yesterday she went for a half day. Today she is there almost the whole day, and hopefully the entire day tomorrow. But no dance. No swimming lessons. No therapies. I'm obsessed with Ella's noggin. I make her wear her helmet every time she even puts a toe on something with wheels. I make her not jump. No cartwheels, please. No, no summersaults. Please run carefully. Can we just leave her helmet on 24 hours a day? She can sleep with it on, right? She's a little annoyed with me at this point. But she has learned how to use this whole thing to her advantage: "Well, technically, I have a concussion, so..." i need more toys, or i can't go to school, or i want ice cream, or i need a pet unicorn.

It's so frightening to me how fragile my children's lives are. In the past few weeks, Ella has had two major traumas- a dog bite and then a concussion. If anything had gone a tiny bit differently in either of those situations, she could have been a whole lot worse off. I could be writing a totally different kind of blog today. I didn't realize how easy it is to get a concussion. I didn't know you should always go to the doctor when you suspect a concussion, it's not just about watching closely. I didn't know last week, but I do this week, which is making my Mommy Guilt soar. Alex suggested I be like Elsa and "Let It Go." Our OT said she seconds that idea. I'm trying. It's just amazing to me how a split second can change the course of your minutes, days, life. I send my kiddos out into the world every day- well, most days; they're home sick so much that sometimes I think they'll never make it back to the world- praying for their safe return. My mom reminded me that I can't be everywhere my kids are all the time. I responded "Why not??" It's hard to be a parent and "Let It Go."

Just be careful with those little noggins out there in the great big world. I think I'm going to make Ella wear a helmet every time she leaves the house, not ever go to a friend's house that has a swing or a dog, and follow that child everywhere. Actually, she would enjoy that last part. So maybe I should rethink that. But the helmet idea is a keeper.

So if you see a tiny little blond girl running around the neighborhood, or walking down the hallway at school, or in the grocery store, and she is wrapped in bubble wrap from noggin to toe, and wearing a beautiful Elsa tiara bike helmet, that's my girl. No judgement, people. Just trying to protect my baby from the big, bad world that keeps hurting her. You'd be a little neurotic too if the world kept causing physical damage to your baby. 

Wednesday, November 4, 2015

Broken Angel Wings

Our Halloween went just as expected- typical and amusing. After all the prep to get Ella's costume, makeup, and hair just right, Alex was out trick or treating with Ella and Aidan for about 7 minutes before he texted me and said Ella had decided to take her witch costume off. Fabulous. About 9 minutes after that, the threesome came home- Aidan was done. He was over trick or treating. It was tiring and soggy and he didn't care that he didn't have much candy in his limp pillow case. Ella tried to go back out with friends but her anxiety got the best of her and she came right home.

Before he went to do Big Guy Things, Ben sat on the front porch, candy bowl in lap, waiting for tiny treaters. After a long time without any treaters, I said "Ben! Where are all the trick or treaters?" He replied "Probably at better houses than ours. I mean, we're handing out TATTOOS, Mom." What's wrong with that? Tattoos are allergy-friendly! There were also spider rings, pencils, and candy in the bowl. But Ben did not like my choice of Halloween offerings. 

Ben and Jonah got to go to a Halloween party and trick or treat with their Big Guy Friends. Jonah called about an hour before I was supposed to pick the boys up from their party. I thought here we go, they want to come home early because of anxiety. But NO! They wanted to stay a half hour longer! Woohoo! I didn't care how late they got home, because they were asking to do something away from home for longer. That was big. So I said yes. And then regretted my sleep deprivation the next morning.

When the boys got home from their party, they commenced the Annual Candy Swap. They all get out their candy and divide it up: Jonah and Aidan's piles- without nuts, Mom's pile- all candy that contains peanut butter, Ben and Ella's piles- anything and everything that has sugar in it, and Dad's pile- whatever is left over. Ben yelled at me for "scavenging" in his pile for peanut butter candy. I patiently explained the rule: Since I grew him in my body for 29 weeks, and he has given me many many gray hairs since then, he is required to hand over almost all his peanut butter candy to me. He claimed temporary insanity and forked over the Reese's.

We made it through yet another Halloween without too many problems. Good times.

Want to hear about something totally magical? I took all the kids to see our developmental optometrist for a check up. The doctor checked to see how the kids' special glasses are moving their brains closer to functioning more effectively. She said Ben needs a different lens for his left eye to balance his eyes out. Aidan needs totally different lenses. She said the first pair he's had are called a wedge. Because Aidan's brain and body were so tense, she used this wedge lens to crack open the door to his brain and let a little relaxation in, in the form of these lenses that help Aidan process the world better. Now his brain is much more relaxed when it comes to visual processing, so now the doctor can put different lenses on him that his brain will accept and learn from! Crazy. 

After working with Jonah for a bit, the doctor stood back and announced that for Jonah, the problem is processing. She asked him to tell her four words that start with the sound "g." He said "The letter g?" She said no, the sound "g." He struggled but found four words. Then she asked Jonah to tell her four words that start with the letter "k." For the life of him, he couldn't do it. He sat there for about 10 minutes, silent, giggling because he was embarrassed that he couldn't think of any words. He finally did come up with some. The doctor said what will help Jonah is vision therapy that addresses processing. And luckily, the clinic is setting up virtual therapy that Jonah can do at home on the computer! So we don't have to squeeze any other appointments into our already-crammed schedule. Hurray for Mama!

Next Miss Ella got in the doctor's chair. She pulled her legs up into "crisscross" position. The doctor did some tests on her. Ella did perfect. Then the doctor asked her to uncross her legs and sit like she has to at school. Ella failed all the tests the doctor gave her-- the SAME tests she had just aced!! I was floored. I love this magical doctor. She is pure magic. She said Ella's problem is not her eyeballs, it's her muscles and reflexes. She needs reflex integration therapy, and after that may not even need her glasses at all. What?!? Seriously? Crazy. I told the doctor that Ben and Jonah are both doing reflex integration therapy- MNRI. The doctor personally knows the doctor who 'invented' MNRI, so she said that is exactly what Ella needs also. The doctor said that the testing she does with people's brains, nervous systems, bodies, etc, is only being done by her and a handful of doctors in Europe. I just can't ever understand this. Why, when a therapy or solution is so obviously valid and true and helpful, why don't more doctors do it? Why doesn't insurance cover it? It's ridiculous. 

So we've added Ella to the MNRI group. She's getting OT twice a week now, as well as counseling, speech, and PT. Ben and Jonah get OT once a week. Aidan gets counseling and speech. Ella and Ben get their orthotics tomorrow. Jonah and Aidan go in a couple weeks for their orthotic appointment. We see the psychiatrist next week to talk about three of the kids' meds. Sometimes I feel like I need to stop and catch my breath, but there's no time! There's only more appointments!

Speaking of my littlest angel, I don't know what about this life has broken her beautiful, iridescent angel wings. She is wracked with Anxiety again. She's falling apart. It may have gotten worse because of the dog bite she suffered a couple weeks ago, but regardless of the 'why,' it's all-consuming. She sobs when she has to go to school. She worries and protests if she has to go in to therapies by herself. Her dance teacher has made an exception for me to sit in the classroom so that Ella will actually agree to dance. She is back to sleeping as close to me as she can physically get every night. My poor angel. I don't know how to cure Anxiety. If I did, many of my children would feel a whole lot better. It breaks my heart that I don't know how to fix this for them. 

The other night, Ella was crying about going to school the next day. Finally, she said "I'm weird." I asked why she said that. She explained that no one else in her class cries because they miss their moms, and she does, so she is weird. Dagger to my already-fragile Mama Heart. Sometimes I just want to gather my child tenderly in my arms and cry with them and not ever let go. Why isn't that a Thing that Mama's can do? 

Sorry, I know you're 47 years old, kid, but I'm not ever letting go of you. 

We talked about how lots of kids feel like Ella does, some just don't cry at school because they can hold it in. Ella said she's weird because if I leave her at a friend's house to run an errand, she cries there too. I told her that it's ok to be sad when you miss your Mama. It's ok to cry. But it's also ok to be ok, and have fun when you're not with your Mama. I told her how lots of kids have this problem of being sad when they're not with their Mama. In fact, look how many of those kids live right in our house! Even her big brothers sometimes have to go to their school nurse and call me to come and get them because their Anxiety is too close that day.

My pep talk didn't help her feel better. But I tried. I ended up just tenderly gathering her in my arms and letting her weep until my shirt was drenched and she fell asleep. 

It's as hard for me to peel my baby off of me and put her onto the bus as it is for her to walk up those bus steps. Kids should never know how hard life feels to their parents. 

Ella's teacher emailed me that Ella was just laughing hysterically about something in the classroom, so at least she's having moments of joy today. I'm trying to have moments of joy too. The weather is not helping- all gray and morose. Ben stepped out of the house today to go to the bus stop and asked "Why is it so blurry out here?" I said it's called fog, kid. He cracks me up.

I guess today is a day where we just keep putting one foot in front of another and get through it. Maybe someday I'll find The Fix for all those broken beautiful angel wings my babies have.

Wednesday, October 28, 2015

Head Bonks and Bus Swearing

The last couple weeks around here have been pretty typical. Let's see...a principal called because one of my darlings was swearing on the bus. A kid told his mom. The mom called the school. My boy was identified as The Swearer. My boy admitted it guiltily so the principal admired his honesty and the punishment was just a call home. My boy failed to tell the principal that his friend told him to swear on the bus. And when a friend tells my boy to do something, he usually does it because he can't control his impulses very well. Not that that makes it acceptable at all, but just that there is always more to the story when my kids are involved.

Ella got bitten by a neighbor's dog this week. Poor little thing was running away from it when it bit the back of her leg. Broke skin, teeth marks are still embedded in shades of swollen purple. My poor baby was terrified and heartbroken and couldn't stop gulping and sobbing. She kept wailing "This is my WORST OWIE EVER!!!" Until she fell down on the sidewalk yesterday and her knee bled and then that was the worst owie ever. The doctor said to watch Ella's dog bite to make sure it doesn't get infected, so I'm on leg watch this week. So far so good.

Ella is also struggling with self esteem and school. Our speech therapist is testing her, and is starting to be able to pinpoint where exactly Ella is struggling, and surprise surprise, it's in the area of auditory processing. That's what the preliminary findings are, at least. Just like Aidan. So following multi-step directions is hard for her. That's why she says she can't keep up with her class. The class goes too fast for her and she says she's stupid. 

*ouch. mama's heart cracks in half.*

I've reached out to our fabulous teacher and told her what Ella's therapists and I are seeing, and what the therapists have suggested as interventions to help support Ella in school. The teacher does her best to implement these supports, so we'll see what happens. But worry worry worry. These kids, geez. Thanks for the gray hair, kiddos. Luckily I have a fabulous hair artist who can conquer the stress that exhibits itself in the graying of my hairs.

Two days ago the middle school had a suicide prevention day. The kids filled out risk assessments to see if any red flags were raised about depression or suicide. I expected a call. I waited for it. I anticipated it. And sure enough, the phone rang. Just because I knew the phone would ring about this, doesn't mean it was any easier to hear. Terrifying, actually. 

One of my boys had been pulled by the social worker because of his answers to his assessment. Nothing too major, but enough to cause concern. The social worker had talked with my sweet boy about his answers. He said he had thought about suicide last year but not this year. This year he is on new medication, he told the social worker, and in therapy. The social worker felt he is not at risk for suicide. I explained that my twins frequently talk about suicide, and have since they were five years old. It's almost a way for them to cope with their extreme feelings. I take this seriously, but I also know, to the best of my Mama Knowledge, that they are not actually suicidal. But I'm always on watch. Always on watch. 

We reinforce over and over that suicide is not ok. The world would not be ok without my boys in it. They are not allowed to hurt themselves, and if they do or feel like they will, they have to come to us and tell us so we can help them. Because we will move heaven and earth to help them. Because we love them more than is even fathomable. 

They get sick of hearing The Suicide Speech.

But I know that I've talked with my boys about it, so they are informed and knowledgeable. That's all I can do. Bottom line, their lives are in their hands. But I will do everything in my power to make their lives happy and healthy. 

I had an IEP meeting for one boy yesterday- just an annual review, so not too much fighting. It actually went very well! I know, what a surprise! My boy is improving. Things are getting a little bit better in many areas. We still have some work to do, so we tweaked some things, but overall it was an extremely positive, productive meeting and my boy will have even more support at school now.

One of my boys has been crying his eyes out since Saturday. Well, he took Monday off from crying, but was back at it yesterday. He is worried about some family health issues in our extended family. And he is worried about leaving me. For days, he has either been raging or crying. Yesterday he literally could not get out of bed because of his depression. He laid on the couch most of the day, crying on and off. I couldn't get him to school. He was incapacitated by his anxiety and depression.

And get this. At the IEP meeting that went so great yesterday, the SOCIAL WORKER had the AUDACITY to say that it surprised her that my son was so distraught because she had seen him just the day before and he was fine. Excuse me. What kind of social worker is this? Let's use the term "social worker" loosely from here on out. Why is it that 2 out of the 3 social workers my kid has had in middle school are so jaded that they have the gall to say my kid is lying about his feelings. I've never heard of social workers being so incompetent. I trained to be a school social worker, a lifetime ago, and I've done social workey things my entire adult life. I would never, ever say the things these school social workers have said to me. Unbelievable. I didn't even know how to respond to the ridiculous accusation that my kid is faking his distress. Luckily, my advocate jumped in and wisely said we should be very careful when making assumptions about my son's emotional state. Luckily for the social worker, my advocate was there, because I was about to jump across the table and throttle her. Seriously. 

While I was at that IEP meeting yesterday, I got a text from our babysitter saying the school nurse had called from the elementary school. Aidan had gotten bonked in the head with someone else's head during gym class. THEN he got hit in the face with a lunch box and it cut his skin above his eye. I swear, every time I'm at an IEP meeting at the middle school, Aidan goes bonkers at the elementary school. I don't know if he senses my stress from a mile away or what. Poor kid.

And then to top it all off yesterday, one of my darlings had a big, stinky rage. Because he couldn't get the TV to work to play his show. This is the same boy the "social worker" accused of lying about his distress. Like I said, he is either raging or crying. He can't regulate his emotions well, and can't control them either. 

I did find out one bit of pertinent information this week. My son told me that when he and his wife are trying to have a baby, he is going to eat pickled herring and sit on ice. Hm. Ok...why? Because that's how you have a boy, he informed me. And if he wants a girl, he will eat lemons. I asked him how he gleaned this very interesting information. He said he learned it from the TV show "How I Met Your Mother." Aha. Mystery solved. 

So you know, just the usual around here lately. A few calls from the school about suicide, head bonks and bus swearing. Dog bites and cracked skulls from lunch box attacks. Fits of rage and weeping. Social workers who doubt me and my children. A few million extra gray hairs. AND IT'S ONLY WEDNESDAY. Fabulous. I expect only amazing things from the rest of the week. 

At least I do know now what will need to happen in order to have a boy or girl grandchild. I can rest easy, now that I have that information.

Friday, October 23, 2015

Dude, Where's My Manual?

Here's what I'm wondering: where is my "What To Expect" book? You know those books- "What To Expect When You're Expecting," "What To Expect The First Year," etc.

There are bookshelves full of helpful books for pregnancy, the first year, toddler-hood. There are books about how to be a good mother to boys. About how to raise a teen. There are books about how to get your kid to clean their room. About how to raise responsible kids. About how to get kids to sleep. There's probably one about how to get your kids to join a circus. There are books about every special need out there. Trust me, I've read most of them. There are books about how to get your special kiddo to eat better, play better, be better. There are books about everything. Except a book that tells me how to help my unique kids. Where is that book? Where is my manual?

Where is my "How To Parent Kids Who Have:
Bipolar Disorder
Tourette's Syndrome
Obsessive Compulsive Disorder
Sensory Processing Disorder
Auditory Processing Disorder
Visual Processing Disorder
Speech Issues
Gross Motor Issues
Fine Motor Issues
Low Muscle Tone 
Learning Disabilities
Compromised Immune Systems
Autoimmune Problems

Seriously. I know we parents all joke "I wish kids came with a manual- ha ha." But seriously, in this day and age, why isn't there more help readily available for families like mine who struggle with so much? Why do I have to be Mama Detective and find the things to help my kids all on my own, all by myself? Sometimes just by coincidence, or being at the right place at the right time and overhearing someone else's conversation. Why isn't there more help?

Jonah and I did genetic testing recently. Ben refused to spit in the tube because the idea of it grossed him out so much he almost vomited. Not joking. They can't test vomit, only saliva, so we gave Ben's tube to Dad. His results are still pending, but Jonah and my results are back. This is some crazy stuff, people. Here's what I've learned during my crash course in genetics: A genetic snp is a genetic defect. Sometimes you can have a snp that's not turned on, so even though you have the defect, it doesn't impact you in any way. But sometimes you have snp's that are turned on and are causing your body to go completely haywire. Jonah and I have a few snp's that are turned on, and that's not great. 

I got the results from our testing, printed out a report, and brought it to our chiropractor who had said he would help me interpret all the mumbo jumbo. I knew enough to know that I have the dreaded snp that causes your body to not be able to process and use folic acid correctly. This snp, if turned on, can cause pregnancy complications, birth defects, you see where I'm going with this. So I knew this going in to my meeting with the doctor. But as he and our nutritionist and I sat at the table discussing the ramifications of our results, I burst into tears. Of course. Because lately I can't do anything without crying. I couldn't even talk for a moment. I said I just feel so badly that so much of the kids' problems come directly from me. My genes have even caused all three boys to be tongue tied- a result of that snp I was just talking about. If I could have known this before becoming pregnant, I could have had the right nutrition and the correct form of folic acid that my body requires, and who knows how many less complications we would have had. Why isn't genetic testing mandatory for anyone hoping to have a baby? Just so we can prevent so many things, so easily. 

My doctor said it's not my fault, none of the kids' problems are my fault. That's easier said than accepted. I feel guilty. Stupid genes. Between Alex's and mine, whew, it's a miracle these kids are even walking and talking and don't look like aliens. (No offense, Alex. Your genes are perfect and pristine, I'm sure. We'll see in a couple weeks when we get your results back!)

I am still researching Jonah and my genetic snp's. One thing I found out about Jonah is that he has a genetic defect nicknamed "The Warrior Gene." Ok, seriously. Could this be any more completely on target with what he is experiencing? Wow. With this genetic defect, people get out-of-control angry about things most people can easily handle without being disrupted. I have watched videos of people with this genetic defect and they look exactly like how my boys act. 

I have always believed that there is some way I can uncover what is going on in my kids' bodies. Then I'll know what to give them that will heal their brains and hearts and bodies. We'll get their neurotransmitters working correctly, their guts healthy and whole, their immune systems strong. It's taken me 13 years of painfully slow research to figure out just a fraction of what is happening in my kids' bodies. I think that's terrible. And even more terrible- I still don't know what to do to help them so that they can take off the bandaids of pharmaceutical medications and heal in wholistic, natural ways. Medications aren't healing or fixing what is malfunctioning in their bodies. Medications are our bandaids to get through the symptoms until I figure out what will heal their little bodies. 

Now I have one more piece of the puzzle- some insight into the kids' genetics. I know their, and my, neurotransmitters are all wonky. Our nutritionist is helping with homeopathic remedies to get all our neurotransmitters working the way they should. I thought neurotransmitters were only in the brain- did you know we actually produce them in our guts? So if your gut is out of wack, and leaky, and malnourished, of course your neurotransmitters are affected too, causing problems all over your body. (When I was telling a friend about this the other day, I laughed because she said "You're so smart!" But sadly, I can't take all the credit. I just repeat what smart people have told me.) 

My question is why did I have to figure out on my own that we needed genetic testing? Is this The Answer to all our problems? I don't know yet. But it is something significant. Why didn't a doctor somewhere along the line say hey, I think you should get some genetic testing done to see what we can help through non-pharmaceutical routes. My chiropractor said to me that this is cutting edge stuff. That what I chose to do with this testing is not the norm yet. He asked me who else I know that has done this specific form of testing. I said no one. He said see? He told me once this type of test is able to make money for some company, some day, then we'll see healthcare start leaning towards this type of testing. Until then, we're left to figure it out on our own. Crazy.

Am I asking too much? Is it too much to demand that someone, somewhere have a wealth of information in one place to help complicated cases like those that live in my house? Where is that person? Where is that book? It should be like a "Choose Your Own Adventure" book: if you've tried A, B, and C, and your kids are still having rages, try D! There's still hope! And you don't have to reinvent the wheel, trying to figure out where to go from here, because someone went before you and has another idea you can try! Parents should have some place to use as a resource for finding help that is effective. 

I remember reading books about parenting even before I had kids. I studied children in college and grad school. I had a ton of experience with kids. I thought I would do all the good things good parents do, and my kids would respond the way 'normal' kids do, and we would all grow up together happily. Time outs- a minute for every year of their age. Present beautiful, healthy meals that my darlings would devour. Teach right from wrong. Play and love. All the things you are supposed to do. But from the very beginning of our Child Journey, I realized whoa. We've got our hands full here. This whole parenting thing is not going according to plan. From the time Ben's water broke- 12 weeks too early, and probably because of that damn genetic snp I have- I knew our journey would not be one found in a self-help book on our local book store's shelves.

Part of the problem as I see it is that information is constantly changing. There are new things being discovered and tried all the time. But I think there has to be some way to have information in one place for parents who struggle like we do. Can anyone really comprehend all the zillions of interventions we've tried over the years? I mean, zillions. I always feel like I am not an expert, I don't know much about stuff. But if a friend asks me about a special need, or therapies, or interventions, or whatever, I surprise myself with how much I know. It's only because we've tried so many things. And so many things haven't worked, so I keep looking for the next thing to try. 

As I was sobbing in our chiropractor's office about my crappy genes that have been passed to our innocent babies, our nutritionist said "Just think if you hadn't done all the things you've done for your kids up to this point. Think how much worse off they would be. You work SO HARD to help them." My brain knows this is absolutely true. But my heart aches because nothing seems to work. Granted, if we hadn't tried anything at all, I'm sure all the kids would be much worse off. So maybe I'm mistaken when I say so many things haven't worked, because if we hadn't tried those things maybe we'd be in an even more horrible place. But out of all these zillions of things we've tried, why isn't something working better? The boys are on some heavy duty medications. Why do they still have all these difficult symptoms?

A friend of mine totally hit the nail on the head this week. We were talking about our kids and meds. She said (I'm paraphrasing her pearl of wisdom here) --oooo I love this, it's just so perfectly true--It would be one thing if a medication took away all the horrible behaviors. If we could totally stop rages with one med. Or get our kids to concentrate as well as a typical kiddo with one med. But the problem is, we have to choose between living in absolute hell without meds, OR putting our sweet babies on meds that have a million bad side effects just to see a little improvement. The med doesn't even totally fix our problems! And now our kids are dealing with weight gain, elevated liver enzymes, high cholesterol...and we still have to deal with the horrible things that the med is supposed to treat because nothing is treated 100%. It's awful. 

That's exactly it. Those of us who have to walk the tightrope of meds have to weigh whether it's better to give our little loves obesity, high cholesterol, elevated liver enzymes, and maybe a little relief from rage (or whatever you're treating), or just let them create a living hell that they cannot control and that the entire family has to navigate. 

It's not fair. It's not easy. It's not the way it should be. Someone, somewhere, should say well, I don't know if you're into "alternative" stuff, but you could try essential oils. Or homeopathic remedies. Or interactive metronome training, brushing, or Feldenkreis. Or MNRI. You can also try medications. Or maybe accupuncture, cranial sacral therapy, or therapeutic listening. You could try developmental optometry. Or counseling. Medications are sometimes necessary, but I wish someone had told me about all these other alternatives, and the other zillions we've tried, before we went down the med route.

It's so impossible, and lonely, and dark, and hopeless, and heavy, searching for the next thing to try because all the zillions of things you've tried over the past 13 years still haven't made life tolerable with, or for, your kids.

Where's my manual?