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Saturday, September 27, 2014

Eyes On Great America

I have to find a new route to get to the kids' eye doctor. Every time I take Ben to an eye appointment, I forget, until right before it comes into view, that we pass Six Flags Great America on our drive. And this ALWAYS sets off a meltdown. 

Because remember when you promised that we could go to Great America this past summer? And Dad promised he'd take me? And then he had his hip surgery and didn't take me? And you said you'd take me? And you never took me? And WHY can we NEVER go to GREAT AMERICA?? 

You get the picture. Major. Meltdown. Every. Time. 

I need a new route.

This time was made worse by the fact that Ben is totally 'off' right now to begin with. I don't know what in the world is going on, but all my kiddos are quackier than normal. Some people say it's because of the new moon. Well, if that's the case, I hope the moon gets old REAL fast because I'm REAL tired of the chaos around here. 

For the past year, Ben has been complaining about his eyesight. Let's keep in mind, he is a hypochondriac. So when a complaint is verbalized by my sweet darling, I empathetically sympathize with him, but take it with a grain of salt. When the complaint keeps recurring, I take it more seriously. So for a year, he's been complaining. He can't see the board at school. He can't read unless it's very close to his face. He never ever wants to or is capable of reading his books for English Language Arts that he is supposed to complete every couple weeks and do reports on. So actually, this has been going on more than a year, now that I think about it. People say he must be lazy. I hear that a lot from ignorant people. My boy is not lazy. He has diagnoses that make living like 'normal' people and behaving like 'normal' people impossible at times. That doesn't make him lazy. That makes him a hero.

I took him to the eye doctor three times this past year. The first and second time, she said he's fine, but have him come back in 4 months and we'll just check to make sure everything is still ok. This past week was checkup number three. And still, 20/20 vision. Doesn't need glasses. The doctor said Ben can hold books closer to his face if that helps him feel more comfortable, and should sit in the front of the classroom. Which he already does. 

The door to the doctor's office had barely shut when Ben exploded in total frustration. He swore, he cried, he yelled, he freaked out. He called the doctor names I cannot repeat or my Mom would tell me to go to my room. Because he felt I didn't believe that his eyes bother him. And the doctor doesn't believe him. And he already sits in the front of the room. And he CAN'T SEE, he said.

And then. To top the whole meltdown off, to add insult to injury, we passed Great America again on the way home.

I thought for sure my son's head was going to literally explode. He just couldn't take all the injustices he felt were bestowed upon him in one afternoon. It was a terrible drive home, and I had to pull over at one point to have him climb in the back seat so he could rage without hurting me or Ella or causing an accident. The debate in my head while a kid is having a rage and we're driving is do I race home as fast as possible because that's the only place I can ensure everyone's safety and calm my child down, or do I pull over somewhere so we don't have an accident and wait for the anger to subside, which it won't for a very long time, which will scare the other kids in the car with me…it's always a dilemma.

This particular day I decided to just ignore the rage as much as I could and get us home as safely and quickly as possible. As I helped Ben calm down in his room, I assured him that I did believe he is having eye trouble. If he says it over a long period of time, and it's a consistent complaint, I believe him. 

That night I went online to Google other possibilities for vision problems. I couldn't find anything. I told Alex "I WILL find out what is going on and how to help Ben." His response was "I KNOW you will." Amen, brotha.

I got in touch with a friend who has experience with eye problems that regular eye doctors do not test for or diagnose. I talked with, who else, our OT, who knows absolutely everything about any question I have related to anything about my kiddos. I would be so lost without our therapists. Seriously, they are angels sent from Heaven JUST to make my journey easier, this I am sure of. 

The information I got is that it is possible to have vision problems that are not detected by a regular doctor's tests. So Ben could have legitimate eye trouble that is just not being tested correctly at our eye doctor's office. There are a whole host of things that could be going on with his beautiful eyeballs that could be causing him frustration. So on to a different kind of eye doctor we will go. I will not leave a stone unturned until everything is tested and ruled out about Ben's vision. Because I can tell he is suffering with something, so that is unacceptable as long as I am his Mama.

It may be nothing. Ben may just be frustrated about his vision for no reason that any doctor can see (pun intended). But I'd bet that there is something going on that we can identify and fix. Because that's what I've found for everything over the past 12 years. Everything is identifiable and fixable. At least to some degree. The worst part is not knowing. Not knowing why your kid can't focus on his math homework. Not knowing why your kid will only eat yogurt and nothing else. Not knowing why your kid can't jump when all the other kids her age can. Not knowing why your kid can't wear jeans. Not knowing why your kid refuses to flush a toilet and walk in sand. Not knowing is the worst for me. If I know- if I have a name for something- I can fight it, research it, conquer it, tackle it, defeat it, explain it, understand it…and then understand my babies better. And love them for who they are.

Daddy is saving the day and taking Ben to Great America tomorrow. Maybe I can keep my route to the eye doctor after all. 

Monday, September 15, 2014

Pondering

I just dropped Ben off at his drama class. He takes drama now. My son takes a drama class. And, get this, before he left for class, 


HE. PUT. ON. A. PAIR. OF. JEANS. 


I know some of you are like yeah, whatever, what's the big deal? But if you have a sensory kiddo and there is something they never ever ever do and then they do it, wow. Just wow. That's how much Ben likes drama. He put on jeans. AND changed into a polo shirt. What?!? Dude. This is serious. The kid never in a million years ever wants to wear jeans. Ever. He'd rather be raked naked over hot coals. He was so proud, bouncing down the stairs to show the whole family how he was wearing jeans. Like Jonah, he said. Jonah wears jeans but Ben ONLY wears sweat pants. Incredible. We have witnessed a miracle this evening.

I'm not sure I've ever been more proud of him. He said last week before the first class, "Mom. You're just going to drop me off, right?" Uh, I guess so. You don't want me to come in? "NO Mom. Just drop me off." Ok! Back off, man! I'll just drop you off! 

Last week the drama teacher (who is amazing and sensitive to Ben's quirks and so supportive) said Ben and Jonah could come to a class and see if they felt like it would be something they'd like to do. They both loved it, but Jonah wants to do drum lessons, so he decided that he'll do that for now and wait on drama class. Ben wanted to sign up right away for drama. His best buddy is in the class, so it's perfect. You never know if he will stick with something, but at this point, it doesn't matter. What matters is that he tried something new. Without me. He is putting himself out there. He is participating in the world. He is being social. He is wearing jeans tonight. 

On the way out the door tonight, Ben hesitated. "Hm. These jeans are tight, though..." he said. I could tell he was on the fence about whether he should jet upstairs and change into comfy, reliable, safe sweat pants. I said you only have to wear them for an hour. And you look so handsome! So off we went. I pulled up to the front door of the studio and Ben jumped out of the car. He turned to wave as he walked in the door. He looked so…typical. He looked like any other 12 year old boy, thick sweatshirt and phone in hand. But I know what an enormous, mind-blowing thing this is, even if Ben doesn't realize it himself. That's what Mamas are for. They realize the enormity of each of your milestones even when you're oblivious because you're just living your life. 

You know how in the Christmas story, the Bible talks about how Mary "pondered these things in her heart"- that has always been my most favorite sentence in the whole Bible. I've always been struck by that. Before I had children, I used to think what does that mean? Pondered in her heart. How do you ponder something in your heart? But after having my four special babies, I totally understand where Mary is coming from. I totally get "pondering in your heart." Every Mama does it. We watch our babies. We hold the memories of them close to our souls, in our soul. We worry about them and think about them and hope for them. We problem solve about how to help them through tough times. We love love love them. Fiercely love them. We hold all these things and ponder them in our hearts.

I'm holding Ben in my heart tonight and pondering him. Pondering and cherishing how he chose to wear jeans tonight. How he didn't need me to stay with him at drama class. How he's trying something new. How he's doing it alone, without Jonah. How he's happy doing it. How I trust his drama teacher knows how to push Ben, yet support and encourage him. How he's shaping the person that he is and will become through this experience. 

And did I mention he's wearing jeans tonight?

I'm holding yet one more memory of my sweet child close to my soul tonight, and pondering it in my heart.

It's Ok To Breathe

I'm becoming Me again. After 12 years of living solely for the small people in my life, after living for them and with them and through them and because of them, I have 6 hours to myself every weekday. I have 6 hours every day where I don't have to lift anyone. Don't have to buckle carseats. Don't have to cajole a little one into wearing underwear AND shoes at the same time. Don't have to wipe a butt. Don't have to pour milk. Or wipe up spilled milk. Or convince a little one that it is a good thing to flush a toilet. Or make three different lunches because the first two weren't satisfactory for my little sensory child. Don't have to keep track of anyone except me. 

I feel time differently now. I have to refamiliarize myself with my frame of reference for time. It takes a whole lot less time to do anything when you're alone. I can't believe how easy it is to pop in the car and run to the store for milk. Just milk! No stress, no arguing about whether we need fruit snacks or ice cream, just me and my milk. I can breathe. 

Breathing can be uncomfortable too. I like to lose myself in the tide of my children. I like the chaos of my kids and all their friends chattering and running and dressing up and finding the makeup I've hidden in my closet so it wouldn't be found. I love it when one of my babies needs a hug because my arms can make the stress of the day evaporate, just for a little while. I love taking care of them. I love spending time with them. I love hearing their laughter and the funny things they say. So when I have time to breathe, or get milk, all by myself, it's still a little uncomfortable.

Last week, on Monday, I had an uncomfortable day. I didn't see any friends to brighten my hours. I didn't have a project. I only had physical therapy for my silly knee caps that don't move the right way. It was a little depressing and a lot uncomfortable. I started to feel panic. What if this is how it's going to be forever? What if it's always uncomfortable and boring and depressing to be without my kiddos? What if this is as good as it gets?

But on Tuesday my parents came for an overnight visit. And even though they were privy to some wicked hot tantrums that night, they reminded us how much they love us all unconditionally. They took me out for breakfast after all the kids went to school on Wednesday morning. At first I thought "30 minutes for breakfast with them! That's not enough time for anything!" But then I remembered that I wouldn't have kids along, and you can do a whole lot in 30 minutes when you're a grownup without kiddos. 

I know I am incredibly lucky and blessed. Seeing Mom and Dad always boosts my spirit, gives me courage to continue this journey of crazy life. I hope I am for my kids what my parents have always been for me. They are strength, wisdom, unconditional love, and when I talk they hear me. They don't just listen, they really hear me. They are a safe place for me to land. No matter what I'm dealing with. I hope I am that for my kids. I hope I've learned enough from my parents about being a parent to pass it on to my kids. I am lucky and blessed to have the parents I have. They are rare and beautiful souls; they make the world a better place by being in it. They are a shining example of what every parent should strive to be. Just there. Parents should just be there for their kids. Always. No matter what. 

So my day started off great, because not only did I get to have a special breakfast, but I got to share it with my Mom and Dad. Then I went to the grocery store and bumped into three friends! I got to have a chat with a "bff," as Ella calls all good friends, as she searched for ginger. The sun in my day kept getting brighter.

A friend texted me to see if we could get together for lunch and talk about our special kids. I haven't seen this friend for a while, and to know that she was thinking about me was a gift.

Through some interesting circumstances, I've been put in touch with a woman who I'm sure is another one of my soul mates. Alex fondly says I have about a million soulmates, everyone is my "soul mate." Because I love (almost) everyone and am so exuberant about my friendships. But he's wrong, I'll have you know. There are only a very few people in this world who I feel a connection with that constitutes "soul mate." Well, maybe more than a few, but still not millions, as my husband insists. It's really funny to me because in the last few months, it's happened twice where I met someone for the first time and just instantly knew they 'get' me, they 'get' my kids and my life, and they're one of my soul mates. That hasn't ever happened to me before, when just meeting someone. 

Anyway. The conversation I had with this particular woman this week was incredible. I have a tendency to forget that I am not alone in my unique life with my special kids. There are other families out there experiencing the same exact things. This woman has an older son who has Tourette Syndrome. She was talking, and finally I told her "Listen. You're going to make me cry. I'm going to cry right now, because you 'get' this and me and my kiddos in a way that no one gets us. Unless you've lived it." It was incredible. 

Every Thursday, I get to be a helper in the cafeteria for the Kindergarten classes. I am the Milk Helper. I make sure each little Kindergartner gets either white or chocolate milk. Love it. Ella's class lunch overlaps with Aidan's, so every Thursday I get to hug both of my littles while they eat and socialize with their buddies. It's a little hard for both of them to have me leave. They linger and hug tightly and there's a little sadness in their eyes as they follow the line to recess.

I love watching kids at school. Especially the little ones. Everything about them is precious and fleeting. I can't count how many zippers I get to zip every Thursday during my half hour of helping. 
Or milk cartons I have to open. Or kiddos I take to the bathroom so we make sure they get back to the lunchroom ok. Or sweet faces that light up as they see me and wave like crazy because there's a MOM that they know at SCHOOL! Soon they'll know how to zip their own zippers and open their own chocolate milk. Soon they'll hide a little of their excitement in seeing their friend's mom in the lunchroom because they're too cool to jump and wave at me from down the hallway. I love being witness to these little things in all these kids lives. I silently, mentally, give each one of them a hug from the mommy or daddy or grandparent who sent them to school that day. I rub a back now and then and reassure a tearful 5 year old that he'll get to see Mommy soon. I love Thursdays.

I got to have lunch with my mother-in-law after volunteering at school. Again, without kids! It's so strange not having to multi-task in 50 directions while I eat my lunch. I just eat my lunch. So weird. We chatted, we caught up, we laughed. It was lovely as usual. It lifted my spirits on such a gloomy, Novemberish September day.

I realized after all these things happened that lifted my spirits, that breathing into this new life of mine- a life without constant kids- will be uncomfortable at times but I'll be ok. I have to remember I am not alone. I'm not alone. I have to remember I can reach out too, I don't have to wait for people to find me. I have to remember it's ok to breathe even when it feels weird and different and unsteady. 

Monday, September 1, 2014

Tummy Worry

The other evening, Ben got a really bad stomach ache. He was writhing in pain, moaning and crying. He is a hypochondriac, but even hypochondriacs get sick sometimes for real. I could tell this was real pain. The pain went on for hours, despite my best efforts and Mommy Tricks to try and help him. When he was going on hour #4 of the horrible tummy ache, couldn't get to sleep, and nothing was helping, we finally decided that we needed to go to an emergency room. 

When we broke the news to Ben, instant panic set in. Even though he had cried that he wished he could have his stomach cut open instead of having the pain he was in, the thought of something serious being wrong with him put him over the edge. His eyes bulged in fear and he peppered me with anxious OCD questions for the next three hours. That's how long it took for us to be seen at the ER. I was not a happy camper. It wasn't even as if the ER was crowded. Not fun.

I tried to keep Ben calm, but it was almost impossible. If I didn't answer a question JUST right, he would repeat it. If he didn't feel like I was telling the truth, he'd ask again. If he forgot that he'd already asked me something 47 times, he'd anxiously ask again, just in case the answer had changed.

Do you think I have cancer?
Do you think I have a tape worm?
Is it my appendix?
Are you sure?
My teeth are chattering I'm so scared.
Do you think it will be serious?
Do you think I'm ok?
Do you think it will be good news?
Do you think it will be bad news?
Are you sure?
Where is the doctor?
Is that the doctor?
Will I have to have surgery?
Is it my heart?
Do you think it will be good news?
Are you SURE???
My legs are shaking I'm so scared.
Do you think it's a tumor?
Do you think I'm going to faint?
Do you think I'm having a panic attack?
Do you think the doctor knows we're here?
What is that beeping?
Am I dying?
Will they cut me open tonight?
Do I need a blood test?
Will I ever need surgery?
Will I ever need surgery on my heart?
Am I dying?
Will you ever need surgery?
My head is hurting I'm so scared.
Am I going to go into a coma?
Do you think it's cancer?
Do you think it will be bad news?
Do you think it will be good news?
ARE YOU SURE???

No. I'm not sure. Which is why we're at the ER in the middle of the night.

Imagine that script, repeated about 3073 times over 3 hours. I tried to stay patient, I knew he can't help all this. All this anxiety. All the OCD. It's like a loop in his head, questions over and over, he can't rest until he feels like he's gotten just the right answer. And seconds later, he may feel like he needs the right answer again. I knew he was scared. I knew he was very scared. He has bad memories of hospitals. Nothing good comes from a doctor's visit for Ben. But after three hours of this constant interrogation from my son, I was wiped out. Still no doctor.

Finally, the doctor came in, poked Ben's tummy, asked what meds he's on even though I'd already gone over that in great detail with the nurse three hours before. He said we could do a blood test, a urine test, and an ultrasound, but Ben looked "unremarkable" for signs of appendicitis. By this point Ben had had some toots and was feeling a little better. I decided that if he had no other symptoms, like a fever or nausea, we were going to skip all the tests and just go home. We'd see how things went from there. I was done with this ER.

On our way out, the front desk lady decided she needed to tell me her life story, even though I looked like death warmed over and was practically falling asleep standing up because of the intensity of our night. She did not pick up on my social cues that I would rather not have a great big conversation at that moment, and that I was rather frustrated with the care my son had received. She proceeded to tell me that she "avoids the ER like the Plague. Drink a ginger ale and get over it," she told Ben. Awesome. Great advertising for the place she works.

I finally just walked out. She kept talking louder so she could tell me more about her life, but I couldn't be polite while in the state of pure wiped-out-ness I was in, so I just kept walking. I did wave behind me, as an awkward way of saying hang in there, Miss Pessimist. Maybe try smiling once in a while. Maybe don't chew off a Mama's ear at 1 am when she's been waiting with her anxious, ticcy, OCD son, without being seen for 3 hours and expect her to be nice. Maybe get a new job so you're happier...


We went home, Ben manic with relief. Now he wasn't asking his anxious OCD questions, he was happily chatting on and on about everything on God's green Earth. And Mama was tired. So I finally told him he had to calm down so I could concentrate on driving in the middle of the night, exhausted as I was. 

Sweet Ben. You don't realize the weight of the world that he carries on his shoulders, every day, until something like this happens and you see his worries flood to the surface. He worries all the time, whether he lets it out or not. He constantly worries. About everything- real or not remotely real. He just worries so much. People who don't know him well are not let in on this secret about Ben. He expertly hides his Worry, but it eats at him like a parasite. If he is forced to hide his Worry, like at school, he internalizes it and the force of his anxiety is even stronger. I'm grateful he has the support of family and friends who love him, whether he shows them his Worry or not. I have to believe this will help him thrive and be the best Ben he can be.

Hopefully we won't have any ER visits anytime soon. Ben worries even if it's not him needing medical care. If anyone in our family needs to see a doctor about anything, this scenario of Worry resumes. I read an article by a mom who has a child with special needs about some things that we don't tell other people that we worry about. One thing is that we are terrified of becoming sick or dying. Because who would care for and understand our special children like we do? Who would 'get' the nuances that make them who they are like we do? So I tell God every day that I am not allowed to become sick or die, at least until I am 297 years old. Maybe by then my special children will be ok enough for me not to be physically in their daily lives. Of course my spirit will always be hanging around, watching out for them and probably irritating them. But until then, I am Invincible Mama. Nothing will hold me down, break me, or stop me from being who I need to be for my children. Don't even try. I will stay awake all night, if that's how long it takes to be seen by a doctor, answering my son's terrified questions over and over and over and over…I will do that for my son. 

We keep working on the Worry that eats at Ben. I know a little about this Worry, and it is not fun. It can consume you, as I was a first-hand witness to the night of the ER visit. Granted, that was an anxiety-producing experience for anyone. And usually Ben can hold himself together much better than he was able to that night. But that experience shined a light on the Worry for me, and reminded me how my son suffers so much every day with his Worries. Sometimes I forget that my kids have special needs, because we're just going about our daily lives, doing what is normal for us. Especially when something unusual, like an ER visit, happens, our special needs are magnified and I'm reminded how my kiddos need such personalized, patient, constant care.

The day after the ER, Ben said "Thanks for taking me to the ER, Mom." I said I thought you were mad that I made you go! He said "I know, but it shows how much you love me, that you would get me help even when I didn't want to go. That you would get me help when we didn't know what was wrong." My heart smiled. My sweet boy. We refuse to let Worry win.