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Wednesday, September 30, 2015

Broken Mama Heart

Little Miss Ella had Occupational Therapy yesterday, as she does every week. When my friend, the OT, brought Ella out to the waiting room after her session, she had That Look on her face that I know so well. My friend had found something new for me to worry about for Ella. She had found another piece of the mysterious puzzle that is my daughter. I braced myself. 

It was something I already knew, something I had seen at home, and had actually already discussed with our educational advocate (who has already opened a little electronic file on Ella with all my emails, in the eventuality that my little dear also needs help to get help at school. It's coming, mark my words.). My friend, our OT, said that she noticed that it is very difficult for Ella to follow multi-step directions, despite the fact that she is paying attention and trying very hard. Something happens in her little noggin that makes it so difficult for her to understand and comprehend what is being asked of her. 

Yep. Knew this was coming, just was sort of waiting to see if the rest of the world would identify it as an issue. I was hoping I was that "crazy mom" that some people have accused me of being through the years: that mom that thinks all her kids have all kinds of issues that are actually non-existent. Nope. I'm not that "crazy mom." Unfortunately. I wish I was just crazy and that my kids didn't have all these problems. That would be preferable. But sadly, I'm not nuts.

I asked my friend, our OT, if Ella should get back into Speech Therapy to address these issues. They are the same issues that Aidan has been working on in speech for years. Isn't that sort of funny? Ella is turning out to be so much like Aidan in regards to the areas that they need support in. Ella doesn't get as confused as Aidan does with every day type things. She doesn't ask in September if it's February. She knows where the front door is. She understands which room of the house is the living room. But I definitely see areas of great confusion for her. When we do homework, she tries so hard. But she still is confused about what step to take, what to write, what the directions are asking her to do. I was hoping this was just part of her tough adjustment to first grade, and that it would all sort of even out and get better as the weeks went on. But it's not.

Yesterday Ella cried because she said everyone in her class is smarter than her, and that she is so dumb. She said she doesn't know anything and all her friends know so much more than her. Ouch. Do you hear that? That's the sound of my heart being crushed. I can see how the areas that Ella's brain struggles with could lead her to believe she is dumb, that she isn't as smart as her classmates. It's not true, but I can see how Ella could perceive that. I can see her self-esteem crumbling before my eyes. This has happened to Aidan too. Both of them are perfectionists, and when they cannot achieve perfection they are so hard on themselves. The irony is that they are two of the most incredible beings on this planet. It makes me so sad to understand that the world they live in is shaped in a way that they are made to feel dumb, when they are actually brilliant in so many things. I tried to tell Ella that yesterday. I tried to explain that sometimes math comes easy to friends. Or understanding directions. But sometimes those things are hard for someone, but they are smart in other ways that are just as important. Like Ella is so smart when it comes to understanding people and taking care of others. She is so smart when it comes to being a beautiful, generous human being. 

Ella just ignored my great speech and kept crying about how she's dumb. So much for my eloquent problem solving techniques.

Our OT thought it might be a good idea to get Ella's hearing checked to make sure all the ear infections she's had haven't damaged anything biologically. If that all checks out ok, then speech therapy will be the next step. Meanwhile, I'm sitting here with my skin crawling, knowing that my little girl is at school, not understanding half of what is coming her way, feeling more dumb as each day goes by. How do you put a shield around your kiddo who learns differently so their self esteem isn't damaged by a world that is made for typically developing kids? I want to jump in my big, dirty, popcorn-encrusted van and rush over and save my baby girl. It's not that she has a bad teacher- just the opposite. She has been blessed to have four absolutely incredible teachers touch her life these past few years. It's just Ella's brain. I don't know how to sit by and watch this happen to my baby- watch her self esteem go to a deeper place every single day. There isn't a quick fix for this. I'm afraid that by the time I get her into interventions, by the time the interventions start to help, she'll be so entrenched in her low self esteem that it will be impossible to crawl out of the hole. I want her hearing checked RIGHT NOW. I want her to see our Speech Therapist RIGHT NOW. I want her to have help at school RIGHT NOW. So we can salvage what is left of her beautiful self-confidence.

I do have to say, this is why I stick with the team we have in place for the kids for therapies, nutrition, medical advice, and school advocacy. This is it. My friend saw a tiny little thing that other people in the world may have blown by, not noticing the bigger problem that is under the surface for Ella. But not my friend! She notices all the nuances of what is going on with my kiddos. She saw the bigger problem. She is so gifted and talented and brilliant. All of our therapists and our advocate are like this. If it weren't for them helping me figure out what to do to help my kiddos, I would be totally lost. So many times a therapist has told me that there is an issue that requires a different approach, or a different therapy, and I depend on them for their expertise. I am not an expert in all these things that my kids have going on. I depend on our team to help guide me in how to help my kids. 

I depend on our therapists to tell me the bad news of what else we need to work on. Because while it is bad news, and I do have to brace myself because my heart hurts when I find out NEW bad news about my kids, it is also a gift to know that there is a problem, and there are steps we can take to help make the problem less enormous. I depend on our educational advocate (who is also known at our house as Mama's BFF) to help me sort out how to get the kids the help they need at school in order to function in a world that is not made for them. I depend on our nutritionist to find out what type of support the kids' bodies need to function better. I depend on our doctors to tell me what is going on internally with our kids. I depend on our audiologist to tell me if Ella can hear. I depend on so many, many other people to help me help my kids.

So I'm sorry, dear OT friend, if I looked terrified yesterday in the waiting room. I was trying very hard to not look like a deer in headlights while we talked. I was trying to look like "Hey, I hear bad news all the time about my kids. I can handle it. I'm a professional Bad News Hearer." I'm not sure I succeeded in looking nonchalant, but I know you understand. Thank you for seeing the deeper parts of Ella and recognizing that she needs more help.

I'm going to go put together a plan to help Ella as quickly as possible. Call the audiologist. Email our Speech Therapist. Email the teacher so she knows what I'm seeing. 'CC' our advocate so she can tell me when it's time to get Ella help at school. I'm going to put a plan in place before Ella's self esteem gets too low to scrape off the ground. Wish me luck. It's hard to be an efficient, powerful advocate while at the same time your Mama Heart is broken for your baby.

Tuesday, September 29, 2015

Whispers of Distress

This past weekend we went to a new movie theater. It's a brand new theater that has state of the art ammenities. Like LaZBoy chairs that you can RECLINE in and put your FOOT REST up to watch your MOVIE!!! What?!? Why hasn't anyone done this sooner? Who wants to watch a movie while your body is all scrunched into a tiny, hard, squeaky seat like you're in Coach on an airplane? No legroom! Nowhere to stretch out or cross your legs! Stuffed in like sardines! Crazy. At this new theater you get assigned seats, like you're going to a play or concert. You can reserve your tickets so if you have a big family like ours, you're not peering through the dark, trying to find a place to all sit together. I love it. The concession stand is spotless and smells of pristine popcorn- not like older theaters that smell like a mixture of stale sweat and stale popcorn. There are soda machines that have a million choices that you get to pick with a touch screen. My kids probably love the soda machines more than anything else. Although Ella adored the Family Bathroom. It has a big toilet and a small toilet, a big sink and a small one. So she got a huge kick out of the fact that she and Mama could go potty, at the same time, next to each other. We laughed and laughed. She thought that was a riot.

The rest of the family had been to this theater before, but it was my first time. I was SO excited. It was nirvana. It was a little slice of Heaven on my Saturday afternoon. The kids were all calm and happy. We were going to see a kid movie that I was looking forward to. The theater was overwhelmingly awesome. I was having FUN.

We got to our assigned seats. The kids argued a little bit about who was going to sit where, but for the most part even that went smoothly. The kids clambored over each other, trying to show me how to work the buttons on the chair, because they know me so well and knew I'd be THRILLED with this amazing contraption. They wanted to see and share my excitement. It was really fun. 

We all got settled in. The kids all took off their shoes. Ella had her weighted blanket nestled on her lap. Everyone had snacks. Ahhh. 

I kept thinking "Is this really going to be such a fun, easy, good time? Are the kids really not going to have any problems? Can it be that our family is actually doing a 'normal' family activity without any major malfunctions??"

Wrong. I should have seen the tiny signs from the beginning of the day. But sometimes you don't know if the signs are going to snowball into a major problem, or if they will just stick around and poke you at small intervals all day. So, while I noticed that one of my boys was "off," I just kept going about my day, hoping that the tiny issues would stay just that- tiny. 

About 3 minutes into the previews, the boy sitting next to me started to send me whispered messages. He wasn't feeling well. His tummy hurt. He felt like he was going to throw up. He didn't want to see a movie. Did he mention he wasn't feeling well? Oh, and in case I'd forgotten, he wasn't feeling well. 

I said maybe you just ate too much too quickly just now. Take a little sip of soda and relax. See if that helps your tummy. Nope, that didn't work. More loud whispers. I said lean back. Take a deep breath. Do you really need to throw up? No, he said. He just felt icky. 

On and on and on the whispers of distress went. Finally, I asked my boy if he wanted to go home. He said no. He asked me why this happens to him every time he sees a movie. Why does his heart race and he doesn't feel well? I didn't have an answer. Sometimes I don't have answers for the hardest questions that I wish I could have answers for.

So I spent the movie whispering back and forth with my distressed son. Worrying he would vomit all over me and the beautiful theater. He assured me he probably wouldn't vomit, but you never know. He didn't want to go home. But he didn't want to stay. Gr. It's impossible to relax when you have a distressed, anxious kid. I looked over at Alex at one point and he was sound asleep in his big, comfy chair. Humph. Must be nice.

So after Alex's nap and the movie, we went out of the theater. Ella had to use that awesome bathroom again, so we had to wait while another family finished using it. My distressed son was starting to escalate. He had wanted to buy a book after the movie. Alex and I hadn't had a chance to discuss it yet. That irritated him. We were split up, trying to get small people into appropriate bathrooms, and still weren't able to talk about the book. This irritated my already-distressed son more. I willed people to walk out of the theater and past us faster, because I had a feeling that my volcano of a kiddo was going to blow. 

Sure enough. He started pounding on the wall. He started swearing and yelling. I told Alex he and the other kids would take one car home and The Volcano and I would leave right now with the other car. Everything I said, didn't say, did, or didn't do irritated my son more. I walked too fast, he said. So I slowed down. Then he yelled that I was walking too slowly. He was very mad that he couldn't get a book. He was very mad about everything. I just wanted to get to the car to enclose The Volcano in a relatively safe, private area. 

I didn't even make it out of the parking lot before I had to pull over. My son smacked my arm and was hitting the window, so I pulled over and told him that it was dangerous for me to drive while he was acting like this. I said "Tell me when we you can handle this situation and we can drive home."

When we finally started driving, my son was in tears. He bawled "Why am I like this? Am I insane? What's wrong with me? Why do I feel like this? I need to kill someone. Who can I kill? Why am I insane?"

I calmly explained to my little Volcano that he is not insane. He asked me if I was sure. I said yes. I'm sure. You are not insane. Your brain just works differently than other people's, and sometimes things are harder for you. When you get sick, your brain can't function right, it seems, and your emotions get all wonky. But sometimes when your emotions get wonky, your brain can't function right. Maybe you're getting sick. Maybe you're worried about something. I don't know what the beginning of this problem is. I don't know what it is that's making your brain go wonky, but it's either that you're getting sick or that your worrying about something.

Man, I'm good. Sure enough, yesterday the school nurse called with a sick boy, wanting to talk to me. He broke into tears on the phone because he felt so terrible. I went to pick him up from school. He and I were both sick with the same thing- fever, feeling tremendously tired and icky all over. When this kind of illness hits me, I'm fussy and just want to lie down and not live life until I feel better. But that's the extent of it. When my Volcano gets this kind of illness, he is sure he will die. His brain is on fire, it's inflamed, it gets all wonky. Which makes his behavior crazy and erratic, his emotions irritable and violent and out of control. All because he's got a bug. 

So my Saturday Awesome Movie Theater Experience didn't go as smoothly as I first hoped it would. Such is my life. What can you do? You can't control this kind of thing, you can't change it. You just have to walk through it with your Volcano, teaching and guiding along the way, keeping him safe and everyone around him safe. Hoping it is just because of a temporary illness, and hoping it will get better. It isn't quite better yet; my Volcano is still home sick. If we don't have the right drink, there's an eruption. If we can't go to Panera for lunch- eruption. He has to work on his homework- eruption. It's incredible to me, even after 13 years of living with my little Volcano, that something like a virus can completely throw his world out of whack. We all feel horrible when we're sick, but there's horrible and then there's HORRIBLE. Poor Volcano. There's always hope that tomorrow he will be healthy again and his brain won't be so wonky anymore. 

There's always hope.

Thursday, September 24, 2015

My Troll's Bony Butt

You know how some people say they feel like they have an albatross around their neck, dragging them down, pushing the life out of them? Or that they're carrying the weight of the world on their shoulders? I don't have an albatross, or the world on my shoulders. I have a Troll.

My Troll looks like something out of a scary children's fairytale. He is short and stout, sort of square-shaped. He has coarse, scraggly hair that spikes out in odd places all over his body. And he's gray and dark green. Depressing. He doesn't talk, he just smirks. He's pretty much a nightmare I can't get rid of. And as he sits on my shoulders, his itchy wool socks dig into my skin, scratching and irritating me. Never leaving me alone. My Troll's long, pointy nose hangs down and flops onto my head when I'm least expecting it, its weight surprising and annoying me. Sometimes my Troll stands on my shoulders with his pointy little shoes, and that is a little more comfortable for me. Then his socks don't aggravate me and his weight doesn't push me down.

The problem is I never know when my Troll will plop down onto my shoulders with his bony behind, dropping the weight of the world directly onto me. I never know when the impact is coming, so I never know when to prepare, so I'm always on guard. Always on alert. Always in "fight or flight" mode. Because you have to be ready to brace against that pesky, ugly, irritating Troll.

With some special needs, you never know when things will blow up, change, melt down, break open, get worse. You just have to sit and wait, and try to enjoy the times in between the flare ups. That's really hard! It's hard because you're always waiting for that other shoe to drop. Who can enjoy anything when you're waiting for the inevitable Troll to dump his crushing weight onto your shoulders?

We didn't have a full-blown rage in our house for three whole days this week.

That's practically unheard of. Starting Sunday night with dinner, life became suddenly enjoyable. Tolerable. Less chaotic. We try to have Sunday dinner as a family, because during the week our schedules are so crazy after school, and honestly the kids are so difficult during meals, that Alex and I eat after the kids go to bed. That way I can ingest my food without having a panic attack because of everything going on at the dinner table.

Sunday dinners are usually pretty miserable. Fighting, screaming, kids being distracted, kids touching each other and making each other mad, kids not eating, kids eating too much and too fast because of their medication side effects, teasing, yelling, swearing...I don't even want to think about the horror of our Sunday dinners.

This past Sunday, we sat down and I waited for my troll to smash his bony behind onto my shoulders so hard that I couldn't breathe.

But it didn't happen. Alex and I kept looking at each other from across the table, surprise in our eyes. The kids were...wait for it...nice. I know, what?!? They were nice. They ate nicely. They didn't fight or yell or scream. They didn't hit or kick each other. I wasn't sure I was in the right house. I told the kids I was so proud of how they were acting, we gave them big praise.

After dinner, I took Ben and Jonah upstairs to oversee the bodily cleansing process. Ben wanted to race me up the stairs, so I ran in my funny Phoebe (from "Friends") way and made him laugh so hard that he fell on the floor and I won the race. When he recovered, he said, "Mom! Why are you so funny and fun tonight??" I said, "Because, my darling, you were all so wonderful at dinner that now I have the energy to be funny and fun! When I have to spend an hour breaking up fights over the dinner table, that takes all my energy. When you guys are actually nice and calm, I have energy to be awesome!" I hope that message sunk in deep, deep. It was a great night.

Monday went well. No major meltdowns. Jonah is having an emotionally rough week- anxiety, depression, separation sadness. But we're wading through the Bog of Ick, one step at a time, trying to overcome this new surge of hard emotions.

Tuesday, same thing. All was good. I had to take Ella and Aidan to therapy after school, and then Jonah called when he and Ben got home from school. Jonah wanted to be with me, so I left therapy and picked up Jonah and went back to therapy. Small price to pay for a happy kid.

Yesterday, the troll came back. Stupid troll. I knew he was going to clonk me sometime soon. I was waiting. And while I knew he would be back, I didn't know when, so of course he caught me off guard.

I took Ella to dance. I should have known the Troll was gearing up for a take-down. My son called, screaming and crying that my other boy was going to kill him. You may wonder why I would ever leave my boys home alone, given what you know about them. I take this very seriously and give it much consideration every time the opportunity for them to stay home alone comes up. I can tell if they are in stable moods or not, and if not, they come with me. A lot of times they are stable and just want to stay home and relax. Usually they all go to different parts of the house and do their own electronics and don't interact with each other. It also depends on how far away I am going and how long I will be gone. Dance is three minutes from our house and I was going to be gone for one hour.

Apparently, one boy was watching TV yesterday and the other boy wanted to watch a show on that TV. So World War III ensued.

I had to leave dance, with my friends agreeing to take care of Ella if she needed anything, and zip home in a frenzy to make sure the fight was broken up. One of my boys gets to the point in his meltdowns where he just screams as loud as he can, until his face turns red, and he just cries and cries and screams. While the other boy walks around, threatening to throw shoes, swearing, yelling. I can't get through to either of them when they're like that, so I end up yelling too. It's a nightmare. One of my friends used the term "nut house" recently, and that completely describes our family at times. So I took one boy out of the nut house and forced him to get into the car so I could go back and get Ella. The other boy was just going to watch TV and calm down, so I felt comfortable leaving him alone for the 15 minutes it would take to pick up Ella and get home. I had to stop three times on the way to dance and pull over because my boy was so mad I felt it wasn't safe to drive. Three times in the three minutes it takes to get to dance. I finally made him get in the back seat. He was still in his socks, and kept banging on the window with his shoes.

One time when I stopped, a sweet old man in a pickup truck stopped beside my van. He motioned through the windows to ask if I was ok. I so wanted to tell him no, I'm not ok. Can you just take my son away from me for a few minutes? I'm so tired of dealing with this. But instead I put on my brave face, smiled, and gave him a thumbs up. Once again my brave face shone through the Troll's stinky, itchy socks.

Even if I didn't feel brave, I figure fake it 'till you make it.

When I got to dance, I parked, got out, and locked the car. My boy continued to freak out in the car, banging his shoes on the window and screaming. He was able to get out any time he wanted to- the car wasn't locked from the inside out. I just didn't want to be around the Crazy anymore. I walked across to the dance studio and sat outside on a bench, near enough to keep an eye on my boy while waiting for him to calm down. Finally, he got out, still sock-clad, and tromped across the parking lot. (At times like these, you don't worry about dirty, stained socks. You don't force a kid to put his shoes on. You just go with it. In the grand scheme of things, who cares about dirty socks?) We went into the studio. Later, I told the boys from now on they have to come with me to dance, because I am not driving around like a crazy woman after they call screaming that they are going to kill each other.

Darn Troll. I hate him. Him and his stupid, itchy socks and his bony butt. No wonder I have such horrible neck and shoulder pain, it's from him!! I've heard many special needs parents say that they suffer from something similar to Post Traumatic Stress Disorder.

It's so true. You never know what's coming next. You can't predict any part of life. You don't know if you're going to have a fine, normal day, or if your kid will have a meltdown of epic proportions and you will have to restrain him on the floor. You don't know anything. From if a kid will actually eat the food you make her to whether a kid will do his homework today or will we be facing Complete Shutdown, in which case I have to do damage control by writing to teachers to try and explain our Crazy to them.

Exhaustion. Trolls cause exhaustion. Sometimes it's too much to keep up with, but you don't have a choice. You just keep going because that's what you have to do. You don't have a choice. Bring that damn Troll with you and do your best to ignore his itchy socks rubbing on your face all day, reminding you of his presence.

My choice is to acknowledge my Troll, but not let him run my life with his fear, dread, depression and anxiety. Honestly, almost every day, someone tells me I look so calm, like I have it all together. My favorite Facebook meme says something like "Mama's- we're all a hot mess, some just hide it better than others." I'm a super hot mess, you have no idea. I explain to people who say I am always so cheerful and calm that I choose that. It's not easy most of the time, but it's also not fake. I don't fake being happy, I just choose to be happy. It is my authentic self, to be enthusiastic and joyful. I choose to get up and shower and put on clean clothes and makeup (lots of makeup to cover those sleepy eye circles!) and just live life and let my joy out.

That Troll isn't going to rule my life. Yes, our lives are totally nuts most of the time in this family. I'm sure Alex and I have PTSD. This life sucks, to be honest, most of the time. But my heart still has joy, and as long as I'm breathing, I will let my joy out. My joy is more powerful than my Troll's bony butt.

So squish me as much as you want, Troll, you will never squeeze the joy out of my heart.

Friday, September 18, 2015

Ella's Future Husband

One of my daughter's very best friends in this world is a little boy. His family and ours share many similarities, and I can see why Ella adores this boy so much. This little boy is full of joy and life. He is strong and smart and spunky. Sometimes Ella complains about how friends have been mean to her- never with this boy. When I go to pick her up from playing at his house, she is always as content as she is at our house, which, given her anxiety, is really saying something. I hear all about how they play "boy stuff," like Pokemon, or Batman guys. Hide and seek, or coloring. She comes home with Pokemon coloring pages that her friend has printed out just for her. They never play dolls, or house, which Ella likes to play with her girl friends. And Ella is fine with having friends who like to do different activities. I think having three brothers has made Ella comfortable with all types of play. 

Ella has had an extremely difficult adjustment to this school year. She has always had trouble separating from me, whether it's to go to the bathroom (even at our house!) alone, or go to preschool for 2 hours without me, or have a playdate without me. She struggles with being afraid that I will never come back. This year, that fear has incapacitated her. She wasn't sleeping. She wasn't eating. She was crying for most of every day. Her teacher is amazing, as is the school social worker. They have done everything they can to help Ella acclimate to school. Ella is allowed to bring in teddy bears from home. She has her weighted lap pad with her if she needs it at school. The teacher is sensitive to the fact that Ella is very anxious about math, because she doesn't understand it many times. The social worker at school has had lunch with Ella in her office to help her learn that there are people at school who care about her and who will help her. It's been incredible. But still Ella's sadness persisted.

Six days ago, we started Ella on an anti-anxiety medication. We haven't even gotten to the full dose that the psychiatrist recommended yet, and already we're seeing improvements in Ella's anxiety level. She stopped crying at school. She hasn't had to have one of us carry her onto the bus, crying. She doesn't say every chance she gets that she hates school, that math is hard, that she feels sick, that she can't go, that she misses me so much that it makes her shake all day because she's trying not to cry. (Ugh. Dagger to the heart with that one.) 

Yesterday, Ella even slept straight through the night until 5AM!!!! I couldn't believe it. Was it due to exhaustion? Or her new sleepy med (that hasn't been working very well up to this point)? Or the blend of essential oils I diffused in her room all night? Or her weighted blanket? I don't know and I don't care. One night is one step in the right direction.

I've also noticed that with the reduction in anxiety, Ella is more talkative, even with me. She's always been a great communicator, although she does have a vocal tic that's sort of like an "um" or "eh," and this really frustrates her when she talks sometimes. But this past week, Ella has been sharing new insights with me.

Two days ago, Ella and I were sitting at the table doing her math homework. She is extremely distracted whenever we do homework, so I can't imagine what she's like at school. So we were supposed to be focusing on math, but instead Ella looked up at me seriously. I thought "Good God! This kid can't even finish writing the number '4' before she has to spurt out some more random information about whatever thought is flitting through her head at the moment! Here we go with ANOTHER ADD kid! We are NEVER GOING TO FINISH MATH!!!"

But it's a good thing I was in an outwardly patient mood. Because this is what my little girl told me. 

(We're changing Ella's friend's name to Joe to protect him from the mob of little girls who will no doubt want his address so they can also have the gift of being his bff.)

"I sit by Joe all the time."

Uh oh. I couldn't read in Ella's face if this was going to be a good thing she was telling me, or a bad thing. 

"I sit by Joe on the bus sometimes. I sit by Joe in our class. I sit by Joe on the carpet. I sit by Joe at lunch."

I decided to swing the conversation in a positive way, since I still didn't know if Ella was happy or annoyed with sitting by Joe. I said "Isn't it great to have such a good friend with you all day!"

Ella said, seriously, "Yes. When I sit by Joe, he makes me feel like you are with me, but not with me. Like you're at the school but just not in my classroom. That's why I like sitting by Joe all the time. He makes me feel like you are with me. And then I'm not so sad."

Ok, seriously. I cry with gratitude for "Joe" every time I think about this. First of all, how profound, that my little 6 year old can verbalize such abstract, deep feelings. That's amazing in itself. Second, what an absolute gift that she has this little boy in her life. He makes her feel secure, and safe. He brings her peace and comfort, just by being next to her. He gives her all the feelings that she has when she is with me. Wouldn't we all give our left elbow to have someone like that in our lives? And my little girl gets to experience this as a 6 year old. She is truly blessed. 

We talked about what a wonderful friend this little boy is. And how lucky Ella is to know him, and that we should thank him for helping her feel so much better when she is out in the world. 

Then she was able to move on to write the number '4' on her math page.

The next day I went to the little boy's house to fetch Ella for dinner, and I had time to talk with his mom. I told her what Ella had said about her son, and I thanked her for raising such a beautiful human being. We both got emotional, and she said thank you for telling me this, because I don't know how he is when he's not home. 

We never do, do we? We raise our kids to the best of our ability. We teach them and love on them and let them out into the world every day, hoping they will be able to fly with grace and make the world a better place. But we don't really know how they are in the big world. I thought it was very important for my friend to know what a huge impact her son has on my daughter. It's important for Mama's to know that all the teaching, and hugs, and reading books, and tucking in at night, and the arguing about taking a bath, and the wiping boogers off your kid's face with the back of your hand when you don't have a tissue...all that has led to beautiful, caring, kind, compassionate children who are just amazing people. They are people who help each other get through life. What a blessing to the world that kids like "Joe" are in it.

I will forever adore "Joe" because of what Ella told me about how he makes her feel. 

My friend and I decided our children absolutely have to get married when they grow up. 

Tuesday, September 15, 2015

A Scarf For My Friend

It all started with a scarf. A couple years ago, I crocheted a scarf for a college friend who I haven't seen for like 20 years. I sent it to her just to let her know I was thinking about her and that she was important to me, even though we're only in touch over Facebook these days. I have so many great memories of her during our college days, and she always brought such sunshine to my life. I just wanted her to know that she is loved.

She wrote a message to me on Facebook last year. She said she was so touched by my gift that she had been trying to find a way to give back to me. I could not have been more moved. I burst into tears when I read her message. I didn't expect or need anything in return, but she was beyond generous, and sent me a gift certificate for a massage. A MASSAGE, people! I'm a massage junkie, because it helps my chronic pain immensely, so I was overjoyed and so touched by her generosity.

I decided not to just make the massage appointment for any old random date, because it was so special. This gift deserved reverance and sanctity. I decided I would know when I was supposed to use my gift certificate. So I waited. And waited. I'm sure my friend thought I was ungrateful and had forgotten about her kind gift, but I hadn't. I just knew it wasn't the right time yet.

A couple months ago, I asked my friends on Facebook if anyone knew of a naturopath or homeopathic doctor in the area. Nothing really came of it, and I've continued to take our family to our chiropractor who does naturopathic sorts of things. They're great. Along with chiropractic care and acupuncture, the kids and I get nutrition there, too. It really works, despite the fact that my dear hubby calls it "voo doo" because they use muscle testing to figure out what supplements your body needs. I believe our bodies actually know best what they need, so it makes perfect sense to me. But it's not for everyone, and I get that. With Ella's latest uproar of crushing anxiety and the boys' ongoing struggle with anger, I've been looking everywhere for an alternative to meds. I've tried everything I can think of. Nothing is working very well. I thought that maybe a homeopathic doctor would have a remedy for these chronic, debilitating problems. 

So back to my massage. The place I got to go to have it was incredible!! It's a home that also has the massage business in it. The home looks like it's out of a catalog. It's beautiful, calm, clean, zen. I so wish my house felt like that. The textures of rugs and chairs, the colors of the walls, the wood floors...ahhh. I wanted to move in. The massage was fantastic. The masseuse and I clicked right away. She talked to me during my massage about many things, including ways to use essential oils that I didn't know about. Classes they are offering about oils and nutrition. And...wait for it...she said she kept having something come into her mind, which is her signal that she should say something about it to me. She asked if I was looking for a HOMEOPATH!!!! WHAT?!? I love this stuff. I said yes!! I'm trying to find something to help my daughter with her anxiety, and my boys with their anger. She told me about a doctor she sees who treats all of this and more with homeopathic remedies. She said her son had horrible anxiety, and after seeing the doctor and getting an easy treatment of some drops, his anxiety is much much better. 

I called the doctor when I got home from my luxurious massage. He's out of town for a couple weeks, but I left a message about getting an appointment when he gets back. It's quite a distance from our house, but if this works, the drive will be worth it. I think we've established that I will literally go to the ends of the Earth if I find something that could help my kids be happier and healthier.

The more I learn about all things energy, and natural, and holistic, the more I love it. Our bodies have a genius way of healing themselves if we give them the right tools. I get so excited when a therapist tells me about something new we can try to help the kids. There is a new technique Ben is getting from an OT called MNRI. It works to integrate your reflexes so that you can function better as a whole person. I'm anxious to see what results we get. 

Aidan and Ella are doing Metrinome Training- from what I understand (which isn't much, I'm afraid) it's a computer program that retrains your brain through using a metrinome and playing games. I don't get it, but I'm all for trying it! People from all walks of life have benefitted from it. Professional athletes use this technique to improve their skills. People with ADHD can concentrate better after using it. Crazy, exciting stuff! 

We're brushing Ella again to help with sensory issues and anxiety. 

The only real, lasting, form of pain relief I can ever find is a combination of Zero Balancing and Cranial Sacral Therapy. It is life. changing. When I get done with my hour of therapy, I seriously can't believe that this is how I'm supposed to feel. Pain is removed. I can breathe. I can actually move without hurting everywhere. Remarkable. 

I was certified to practice Reiki a few months ago. Reiki is a form of stress relief that is just so good for the soul. My kids love it. I love it. Over the summer I didn't give or recieve any energy work, I didn't get my pain-relieving therapies, and that's part of why my soul feels shriveled up right now. It's hard to take care of you when there are so many other people needing your attention and energy in order to survive.

I wrote to my college friend and told her what had happened at my massage. I thanked her for giving me this beautiful gift that led me to a new path to try for my kids. Sometimes all the paths seem barricaded. Nothing works. We hit a wall. We drown in a crisis. My kids struggle and I can't do anything to fix it. But if I wait, something new opens up and I find a brand new road to go down. I love that. Sometimes I forget that this will happen and I wallow in my angst over how to help the kids. I have to remember, a new path is always waiting. Thank you to my friend for leading me to a new path. You never know when a simple gift from the heart will lead to a life-changing experience.

Monday, September 14, 2015

Summer Wounds

I'm baaack...
There are two things I need to have in order to write. Peace, and a working computer. Neither of which I have had for the past three months. Very frustrating. But we all survived summer, and that is success. People ask me "How was your summer?" I don't even know how to answer that. If I can answer, I say, "We all survived. No one killed each other, so I'd say it was a successful summer." People think I'm kidding. 

I'm not.

So many times I looked into my children's eyes this summer and the thought flitted across my mind-

"I have no idea how to parent you right now." 

How do you parent such extreme, intense anger? How do you parent a constant barrage of swearing and foul language...all because you suggest that a child put on clean clothes today for a change. How do you parent irrational anxiety? How do you parent all this and stay compassionate, kind, and fun yourself? I don't know the answer. I feel like my soul withered this summer, like it tends to do most summers when we're all together all the time. 

This summer I decided I was going to have realistic expectations of our family. I was not going to make the kids do things I knew would end in disaster. Things like visits to the zoo. Or a museum. Or road trips of any kind. (Except a couple to grandparents' homes, which were worth the struggle in the car.) Or any of the other things I watched other families post about on Facebook this summer. Nope, not us. We stayed home. Where life was stable and predictable. Not worry-producing. Not unexpected or surprising. Which is why my soul dried up. Because I am unlike my children, in that I enjoy adventure, zoos, being in unfamiliar surroundings, people-watching, having lunch somewhere other than home...but this summer we did what my kids find comforting. We stayed home.

We did go to the pool many times, but that always ended in knock-down, drag-out, towel-whipping disasters. *sigh*

It was a summer of wounds. Our house has fresh wounds from the past three months. There are new holes in the walls from people punching them or using door knobs as batting rams. Doors have new cracks in them from being kicked open. The fancy office chair was ripped to shreds by boys who apparently needed sensory input while using the computer, so they just kept picking at it. Certain drawers won't shut properly because they have been slammed so many times. My kitchen counters have new stab wounds where angry boys impaled butcher knives into them in fits of rage. I figure at least they didn't impale the knives into another human. (The knives were hidden most of the summer, but once in a while the boys found them. Hidden among my stash of fruit snacks for Ella and the lighter for candles. My important, off-limits stash.) My laptop was mortally wounded by a boy who thought he was a cowboy, so proceeded to whip a belt through the air, lasso-style. The belt cracked the computer screen. Hence, no summer blogs.

Aidan had a tricky end to his summer with a big wound. He sprained his foot while riding a bike without shoes on. He cut his toes and twisted his foot so badly it was black and blue for weeks and weeks. He was in a walking boot and on crutches for almost the last month of summer. Not a fun way to end the warm months of freedom. But he persevered. He was elated when he got his boot off the day before school started. He felt reborn. You should have seen his beaming face.

For Ella, it was The Summer of No Sleep. Oh wait, actually, it's been The Life of No Sleep. Oh wait, actually, that applies to all four of my children. Hang on, let me go make another couple gallons of coffee.

After careful thought, Alex and I decided to have Ella formally diagnosed at the end of summer with Tourette Syndrome. I've known since she was two years old that she would fit this diagnosis, but we didn't need a formal one since she wasn't struggling in school. In preparation for the eventuality that she will follow in her brothers' footsteps and need help in school, we thought we'd be proactive and get a diagnosis before we're in crisis mode. The psychiatrist went over the criteria for Tourettes with me, although we both chuckled because if anyone knows Tourettes, it's this girl. But as a formality, I nodded through all of his questions: Have Ella's tics come and gone for a period of time- waxed and waned? Have her tics changed? Does she have both vocal and motor tics? Yes, yes, yes. Ok. Formal diagnosis given.

When Ella was four years old, I asked the psychiatrist if he treated kids that young, because like her brothers, she wouldn't sleep through the night. No matter what. At the time, the doctor said he did not treat kids that young. So two sleep-deprived years later, I was back in his office asking for help again for sleep. He does treat 6 year olds. I know medication is extremely controversial among families with kids who have special needs. My opinion is that we shouldn't judge each other. You don't know what a family is dealing with behind closed doors, in the dead of night. You don't know how many hours of desperate worry, collaboration with therapists, doctors' appointments, brainstorming, and endless more worry that family has been through. We should only encourage each other and tread lightly with the raw hearts of special needs parents who are making tough decisions. The only option that seems to be left to my desperate, sleep-deprived soul is medication. Medication in conjunction with essential oils, weighted blankets, therapy therapy therapy, homeopathic treatments, brushing, more therapy, and inordinate amounts of worry. So we started little Ella on the sleepy med her brothers all take.

So far it isn't really making a big difference, unfortunately. Ella's anxiety is completely over the top, with school starting, and that worry keeps her up for hours at night. In therapy, she has named her worry "Mrs. Worry." Mrs. Worry is making Ella a hot mess these days. I don't know if I've ever seen her so sad for so long. She is struggling so much with anxiety right now. One day last week, Alex had to pick weeping Ella up and carry her onto the bus and put her in her seat. When he came into the house I said I can't bear to see her so sad. I think I need to pull her out and home school her. Alex gently reminded me that each boy before her was just like this. And now they're better, he said. But later that day it dawned on me that they're all managing life a little bit better because they're all on anti-anxiety meds!

I talked with the psychiatrist about Ella's anxiety. I asked him for his opinion on anti-anxiety meds for her. The doctor said he thinks that based on our family's history, it's only a matter of time before she starts them, so it might as well be now when she could really use some help. So we made the decision to start her on a low dose of anti-anxiety medication- the same one Aidan takes. It struck me as almost chuckle-worthy, because imagine this: I'm in the psychiatrist's tiny office with all four of my ticcers. It's chaos. Two kids have their shoes off and are trying out the doctor's fancy scale. I'm cringing because given their track record, I know it's only a matter of moments before they break the fancy machine and I owe the doctor thousands of dollars. Two kids are playing with dog puppets and legos on the floor, and the "dogs" are howling as they build lego flowers to lick and smell. And the dogs lick louder than any kind of animal I've ever heard. It's chaos, as usual. Chaos. The doctor and I talk over the cacophany of howling and fighting about the scale, as well as the smell of stinky boy socks. He asks me whether Ella's anxiety reminds me more of Aidan, who takes one kind of anti-anxiety medication, or Ben and Jonah, who take a different kind. I smiled and pointed to Aidan. Because while Ella's anxiety does wake her up at night, every night, for hours on end (like Ben's used to), she has the same trademark issues of Worry that Aidan does. Or used to before he started his medication. 

It was just funny to me, thinking about how I sort of had a menu of Anxious People Options to choose from. 

"Based on Ben, Jonah, and Aidan's medications and how they have responded to them, which medication do you think we should try first with Ella?" 

It was just surreal, I guess, knowing that now I officially have FOUR children diagnosed with Tourette Syndrome, and that all FOUR children are now on medications despite my best efforts to keep them med-free. I admit I shed a teeny tear when I pulled out of the Walgreens drive thru (where they know me better than most of my neighbors, sadly enough) with two tiny bottles of medication that had my daughter's name on them. It's not that I didn't expect it. It's just...surreal, I guess. 

I'm fascinated by the road this life is taking our family. It's hard sometimes not to bury my head in the sand and deny the reality that is my children's special needs. It would be easier in some ways to just pretend things were normal, that Ella never sleeping is normal, that a crazy level of anxiety is normal, that daily rages over putting on shoes and doing homework is normal...

But it's not. And I owe it to my kids to hold their hands and walk forward on this crazy road, acknowledging our wounds and hurts and special needs. But at the same time, also gratefully embracing the joy that this life brings us. Sometimes I have to look very, very hard for the joy, but it is there. When Alex snuggles with Aidan and the puppies on the hammock in the back yard. (Oh yeah- we got another puppy this summer!) When the kids slide in pillow cases down the stairs, screeching with glee. When we imitate each other's laughs and end up rolling on the floor like the end of a classic Peppa Pig episode. There is joy. I just have to keep breathing, and keep up my mantra...despite the wounds, there is joy.