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Preview: Life with Ben

Life with Ben

Updated: 2018-03-02T11:23:13.356-05:00




We grow and move on.
Thank goodness we all grow and move on! Every day is a new fight to fight, but we do and we grow stronger and we grow as a family. My lovely girl is so full of fire and fear and exactly like I was when I was young. My sweet and generous boy is so strong and gentile and amazingly determined and challenging before he even turns eleven. I don't know how to do any of this high trauma parenting, but I never have and we have made it this far. Time for me to grow again.

Still life with Ben


I've thought several times of letting this beast go. In many ways a beast is what it has become. It is a place where I have stored my joy and my fear and where I was able to express many moments of madness seen through eyes that knew silliness. But that resolve has been tested, and tested, and tested again. I keep hoping to find my place, to push through and allow this world that I have so much faith in to be my guide. The therapy, the schools, the friends and lack of friends, the work, good gracious it is a trying world we live in.
And then this.
Kiera didn't want to start school this year. She loved her teacher, liked some of the kids she was going back to, but didn't want to go back. It got worse after Christmas break and awful after spring break. Tears every morning begging me not to make her go, heartfelt pleas to not wake her up for school the next morning. Then several weeks ago my baby broke. She told me that she didn't have happy days any more, she didn't even have happy moments enough to string together into a happy day. She told me that most days she wished she could die and start her life over in heaven. She is seven years old.
Have you ever heard of special needs sibling survivor guilt. I hadn't. Not until five weeks ago and and our world change yet again to accommodate the extremely scary feelings of my sweet, scared little girl who doesn't know how to love and not like her brother who she shares a school with.
This is another thing that I don't know how to do. I do know that my little girl had a threshold and she crossed it and we are exceptionally lucky that we were talking so much and she told us how she was feeling. I do know that we can turn to others to learn how to cope with this new hurtle, because we are really freaking good at hurtles. I have no idea what the other side looks like and I am really tired of not knowing what the other side looks like. I am exhausted by searching for the good and the joyful in the challenge of it all. And so, so unbelievably sad that my little girl has such huge sad feelings at such a young age. The range of "what did we do wrong" that we could put ourselves through is unbelievable and entirely useless, we have done enough grieving to know this. So power on is what we will do, with all the support we can get.
This is the very short version of what we have been dealing with over the last several weeks and I considered not sharing it at all but then I thought, what if someone had prepared me for what Kiera is feeling? Could I have done some things differently? Could I have prepared her for what it is like to see your brother made fun of on the playground? Maybe not but could I have provided and outlet for those internalized feelings? Maybe.
It's all still life with Ben.



In the great big tiny world of special needs blogging, a child is gone. A mother has lead us through the weightless, unbearable world of her shocking goodbye and told us in her strength to never forget. To cherish our time, to hold her sons memory high, and to hopefully take advantage of her guidance and love entirely. I will. You and your beautiful son touched my heart.

The Difference


I was sitting there last night watching my kiddo's tumble around the living room and thought to myself, there is the difference. Right there in front of my eyes, they are living the difference right now. You see Kiera was cartwheeling in circles around Ben, while singing a song and laughing herself silly. Ben was singing the same song but every time he started laughing his muscles would crumple underneath him and he would turn into a puddle of silent giggles on the floor. He would catch his breath, stand up start singing again, start laughing again and turn into another happy boy puddle of silliness. Now all of this is good and fine, in our house. We see it every day, but I don't always SEE it for what it is. The difference between them. Why should I. They are a happy brother and sister, singing and laughing together and enjoying the silliness that is being children. But when it comes down to it, it is not just the difference between them. It is the difference between him and...everyone not him. Literally. No one is him. No one is exactly just like Ben and this year is beginning to tear at my heart.
Fourth grade. How did it even happen so fast? Ben transitioned to a new school building, new teacher, and new parapro (boo!) and did it so smoothly it was amazing. Kid just blows me away. Our biggest problem this year is probably that he is doing so well that when he doesn't do well I have to remind the team that they are not following the accommodations written into his IEP. It is a new thing to have to remind people of the level of brain damage that they are dealing with (expect a lot from this little dude but the IEP is in place for a reason folks). The social side of things is a different story. Up until now Ben has always counted on girls in his class to anchor him socially. Fourth grade girls don't seem to fill that role for Ben though. That leaves him a bit in no mans land. And he tries, goodness knows he tries. The kids in his class are not blatantly mean, just disconnected. And. It. Is. Breaking. My. Heart. I actually don't know what to do. I'm fairly disconnected from my own friends these days, how do I fix THIS? He came home with "Twins Day-Friday" written in his weekly planner. After a lot of conversation what it seems to come down to is that on Friday you get to dress up as your partner, and Ben doesn't have one. But he would like one, maybe he will get one on Thursday. What the hell kind of kid torture is this that he is trying to be so cheerful about? Because if I am crying over it, it can't be making him feel good on the inside!
So here I am again venting to the big space of out there because I am not sure that there are any perfect answers. Ben loves school, Kiera doesn't and she is my "typical" child. Wish us luck on twins day, we might just all go to school as a family dressed alike. Take that!  

The Risks


I have been dabbling in this blogging world for quite some time. Mostly I keep to myself and honestly it is because this blog is self serving. It is not a money maker (I have NO idea how to get that started or I might toss myself right under the bus), it is not a sample spreader (no idea how to get that one started either), it is just little old me getting some junk off of my chest (in fact now that I think about it I'm sucking!). Way back in the days of writing on paper, I quietly began typing this beast and didn't tell anyone I was even doing it until I accidentally left a comment without signing out of blogger. Oops! Cat was out of the bag, I figured that if strangers were reading what I was writing about Dave, he ought to know that I was writing it. So three or four people pop in here now and then, but I have taken care to minimize the risks I take with my blog over the years. Lately I have been reminded just why.
Angry folks. Angry, hurtful, hateful, judgemental, snide, bitchy, I-don't-want-you-as-my-friend folks. I get that when you put your thoughts on the internet for all to see you are opening yourself to judgement, I get that. I also think that just because I say my butt is big doesn't mean you get to say my butt is big bitches. I think that I (by I, I mean parents at large) should be able to question a moment of my parenting day without every troll out there calling me on it. I want to be able to agonize over decisions for my children, as we all do, voice it here and not have some wackadoo call me on my shit and tell me I'm lazy. Bite me. Lazy. Try traumatized. Now don't worry mom (just in case you are back again) this isn't all about me. This is just a little call for compassion. Rant away, complain, cry, bitch, moan, but dear people do find it in your hearts not to attack. We learned it in preschool.  

Mini Push


I have four days. Four days to give just a mini push, a mini push that I hope reaches the eyes, ears, hearts, and frankly pockets of the people that we know. The people who know us and have come to know and love Ben, because to even know of Ben is to love Ben. To know his fight, his heart, his laugh, his love, his temper, his propensity to flirt with pretty blonds is simply irresistible. The boy is amazing. The boy lived and lives everyday with an understanding that bewilders me.
He went form this... 

To this...

in no small part because of the work done by the March Of Dimes. This Sunday we walk to support this organization in the hopes that someday we will see the end of the pictures like the first one, and only pictures like the second. Four days, we'll do our best. 

These Little Things


Clearly I am running on empty (see time stamp on last post) but kiddo's don't know this and neither does the bus, so we get on with our morning bustle.
Our morning bustle is a well oiled machine. It allows for a misstep here, a minor delay there, but that is really all any of us can handle. Forty-eight minutes from my alarm going off until the bus pulling up is what the three of us need to drag sleepy bodies out of bed and pull together something fit for public viewing. Not me, I walk the dog out to the bus in my sweats and a ponytail, but at least I try to wipe away most of yesterdays make-up.
This morning was tough. Not for me because I haven't had enough sleep for my body to figure out what is going on yet, but for the kiddo's. I had sleepy kids who were dragging a step behind. Interestingly Ben pulled it together but being a step behind for him means that he didn't eat most of his breakfast. "I'll be OK, Mom," he said. But there he went nearly empty belly and I feel terrible that he won't complain. I feel terrible that he will be tired and unable to pay attention and forget that he doesn't feel good because he is hungry, not because he is sick.
I can't stand that he is nine and I am fretting over him not eating breakfast. If you are wondering what that sentence means exactly, take it any way you like. I am sure I have felt it in that way. No one could judge that sentence more or in more ways than I have, but I am getting off track.
The really interesting part of the morning was that Kiera wasn't pulling it together. She wanted to hug the cat, she wanted to hang out in the bathroom, she wanted to stare at the wall... When all of a sudden we had three minutes until the bus was going to be there and I had my girl in PJ's and my boy with no shoes on. Now that my friends is a pickle. What does a mama do when her freaking six year old asks for help getting dressed and her nine year old sits before her unable to get DAFO's into sneakers, let alone tie the damn things, just three minutes before the bus comes? You tell me how you balance parenting in this house. You tell me there is a such thing as fair because I will tell you right now, there is not. There is no bloody reason that I should have to play super mom and put Kiera's clothes next to me and "you can do it" talked her through it while I explained that I needed to help get Ben's DAFO's into his shoes. Ben even told her what a great job she did when she went from naked to bus stop in 2 2/1 minutes.
We did make it. She was so proud of all of us, not just herself. She wasn't upset or hurt or put out. "We made it Mom!" she said when she got on the bus. Team Us.
I sat back stunned at what a typical six year old could pull off in 2 1/2 minutes (she even grabbed a butterfly for her hair) and then my heart just crumbled because I asked her to because he can't.   

How Ya Doing?


How ya doing? I ask the question and find myself wondering for an answer regardless. It is the question that, quite literally, has me up at night. How are they doing? How are we doing? How am I doing for that matter?
It's the goofy little triggers that all add up on one day that make me dream and wish and beg with all of my heart for Ben to answer that question for me. I wish for answers to all kinds of questions, like why sometimes I can get answers and sometimes can't. Why were you yelling all day? Why are you crying out in your sleep? Lost party invitation for Ben is making me nuts but I won't know how he feels until he is so disappointed, or not. Kiera has been up twice just to tell me she loves me after going to sleep so sad. And she is just your typical wreck of a six year old.
So, how ya doing, because I have no idea. It's all good but just a bit of a mess. Or is it all a mess but still good? Tomorrow(today) is Monday and my lovely madness will get on the bus and I will try to write a couple of papers and channel some super mom powers of let it be what it is. Now please, let me sleep.  

Tired Just Thinking About It


Oh no. Was I supposed to be doing something about me? I totally forgot to put it on the calender. OK, if I am being honest, taking care of me is both first and last on my list. I must take my meds, I must sleep, and I must avoid exercise at all cost. Wait, did I type that out loud? Take my meds and sleep so that I can care for my family, eat healthy food so my children will have a good example to base eating habits on, and completely flake on the fitness thing. Yep that's me. It wasn't always me though.
It has become apparent that I surround myself with folks who do not share my current wimpy ways. I am surrounded by runners, cyclists, and triathletes. According to what folks are telling me and posting on FB pretty much everyone I know is on some sort of a training program, even ballet and yoga. So where did my motivation go? For nearly twenty years I considered myself a dancer, but that was nearly fifteen years ago. Since then I have found all sorts of love for different sorts of exercise but it occurs to me that what I don't have is the sense of community that I once had.
Part of the problem is I live in an area that struggles with being a community at all. Its called "In a Pocket Between Places" and good luck finding "community" in a place that really has no place. I would love to have a buddy to exercise with but my bizarre neighbors get up a 5AM (HELL NO) to do a video or run together in the evening. Which brings me to my next problem. What about all of us moms who can hardly sneeze without crossing our legs? Where is the super cool race that has thirty-five porta potties along the 5K so no one coughs by accident and pees a little? My body can not take high impact the way it used to, lets just say that.
The reason for this little rant? Other than listening to everyone go on and on about how great they feel getting in shape and blah blah blah (I'm not hostile, really) is that it has become very apparent that I am terribly, terribly out of shape in the past few days. First reminder was pushing Ben in his stroller. Yes the thing is an ancient hand me down that saw better days years ago, but still, the kid weighs 54lbs. and it was barely a hill and I was barely talking AND I GOT OUT OF BREATH. Second, Ben was sick this week and lethargic enough that he couldn't walk. So I carried him. And got very, very tired. Like I said, he only weighs 54lbs. What am I going to do when he is bigger and can't walk? No excuses now, got to get this ass in gear. And these arms and these legs and this gut... Man, tired just thinking about it...



Well, we lived through another one. IEP that is, but as usual, the process has left us with more loose ends than we started with. The reality is that the loose ends were already there, but it takes getting the team together to actually acknowledge them. Now the trick is moving on to what is next. Not just saying what is next, outlining an idea of what is next, but implementing the reality of next. This year that is going to be hard for everyone, even me.
Ben's qualification for services is fairly simple. He is physically impaired. BUT his picture is much bigger than that. When we sit down for an IEP we have six or seven people in the room, not including Dave and myself. To make the conversation as effective as possible the day of the IEP, I do a lot of talking to folks ahead of time. This year the big concern is Ben's focus. Considering that time was short and it was on every ones radar, that was the first concern we addressed. What a can of worms.
What exactly are his focus issues? We have always wondered if this was associated with his CP, still do,  but this is the first meeting that no one wondered if it was a spectrum issue. No one. Interesting that when we asked, the consensus was across the board, "no." What is out there is ADD. ADD? Now there is something I don't know enough about anymore. For instance, would ADD explain the cycle of attention issues we see throughout the year? And what if it does? What then? Please tell me what do we do then because if you tell me medication I may just melt into a puddle of fear and sadness.
First, we talk about testing. Tests are all tossed about in quick conversation then some sent out in email and again I am nearly immobile because every test mentioned is standardized. Standardized and compared against his peers to be kept and referred to and used for future reference. But who are they considering his peers? Who is scoring this evaluation, the lady who sent me the email because that is a name I have never seen before and she doesn't know Ben. How would she know that when she writes her conclusion then sits down with me she is dealing with a boy who doesn't benefit from the efforts of standardized tests.
This is the unknown territory that I make every effort to prepare myself for, but can't always cover. This is the reason that IEP's suck. This is what's next. 

Pain In The Neck


I thought that it would be easy to keep writing when I started blogging again, I had so much to say, just say it. Then I signed up for another writing class and all that went right down the tubes. Nothing like a cocky piece of work who was paid to write a sports page for years and years, who is IN LOVE with his red pen, and is insulted by your lack of perfection to suck the will to write right out of you. That class is however, on my to do list, paid for, and worth a grade so I'm sucking it up and writing my ass off for Mr. Red-Pen. Today I am on break with no writing homework and free to write as poorly as I please. I did one of those really foolish things yesterday, turned my head while brushing my hair. No big deal right? Wrong. At least it was wrong yesterday. As a result, last night and today I'm the goof who turned my head and now can hardly move, because I turned my head. It has afforded me lots of time to look straight ahead and do plenty of being still because everything else hurts. What I have done is read a bit. My reading has reminded me that I am not the only one wrestling with IEP's and the overall idea of fair.
IEP time is not my favorite time of the year. Even when you know exactly what you are facing, it is difficult to see and hear every issue your child deals with in such concentration. This year is a little different in that we have a new member to our team. The change didn't seem like it would be any big deal because he knows me and knows Ben, but apparently this fellas motives are unclear and he didn't realize that I do my homework. For what ever reason, could be at least one of three that we can think of, the man suggested things to me based on reasons that are not only not valid but not legal. My hope is that he was just talking out of his ass and didn't realize what he was saying but was trying to get my onto a track without really telling my why, but now sir, we are not friends. You are dangerous. So am I. Another part of this IEP that is sketchy is the standardized test issue. Ben is in third grade, there are tests all over the place and Ben does not test well. So what do we do? What exactly are we looking at? Are the holes as big as they look and just showing up now or do we move to testing that works for Ben and blow off the rest? And what about the assistive tech that was never implemented and the fact that he doesn't have a scribe either? Or that we haven't been invited to the damn IEP anyway and only know that there is a date from the OT? Or that I just checked the date and it is one of the dates I said no to because it is during a class time for me. Fucking hate being the bad guy. So much anger behind the word hate. I'd say it's not fair, but there is no such thing as fair.
Sigh, time for more Tylenol, my neck is killing me. 

Conversations From Back There


Like a lot of parents, I spend a good deal of time between here and there with my kids "back there". That no-mans-land in the car that is both with you, and completely separate. That place where they can be dreamy little movie watching zombies or screeching, seat kicking, fighting, monsters. It can be a  place of constant kid chatter too, depending on how much you want to hear and how much they think you are listening. Mine assume I am listening almost all of the time (which I am not) so they chatter in my general direction at a pace that you would think defies breathing. Now, I my not be listening in the best sense of the word (because frankly my ears hit an overload limit), but I am in fact listening. I have a very keen sense of when to reactivate the more active part of my listening, that is revert from filter mode to mom mode and really pay attention, and its a damn good thing. If I didn't, how else would I know when to say "dahhhhhh.....???"
Like when Kiera reports that a boy in her room told a little girl that he was going to marry her and Kiera objected that no, he couldn't because she was going to marry! My ears caught that one because I was very interesting in who of the two she was saying she was going to marry! For cripes sake that boy is a beast! So she clarified that she was defending that she had dibs on her little girl friend (what a relief, really that boy is a nut!).
Ben tells Kiera, "girls can't marry girls."
To which Kiera replies, "well of course they can Ben," with a shake of her head.
Ben tells Kiera, "no, girls marry boys and boys marry girls. Girls marring girls isn't allowed."
Kiera tells Ben, "Ben, that just doesn't make any sense at all. When people grow up and they are in love they marry."
To which Ben replies, "I don't think that's legal Kiera."
Kiera asks, "Mom, is Ben right? Girls can marry right?"
At which point I notice that our favorite Christmas song is on and thank everything shiny that my kids are still young enough that they can be easily guided into loud car singing rather than continuing this conversation with a big fat dahhhhhhh????? from mom. It's not that I don't have an answer, oh I have so many answers for this one, it's just that I don't want to give you one just yet. You don't think there is anything wrong with two boys or two girls holding hands right now and I don't need to give you the burden of anyones bullshit that might be tied inadvertently to any bit of my answer. Be a child for just a minute longer OK?
Songs over, wait what? Did you just say lets play the pretend we're smoking game? Dahhhhhh?????

Crab Lucky Crab


Almost exactly eleven years ago I had a human arm (not mine) in my body, through a tiny opening in my neck. This fantastic woman (who's are it was) was removing my cancerous thyroid, several lymph nodes, and exploring every inch of what she could reach from my ears to my armpits. You should see my scar, or not see it really, it's a dream come true. How this woman did the work she did and left my neck with a barely visible white line I will never know, but I will always remember her name with a level of awe and appreciation. She put in one long interior stitch that she pulled out a week later, my head didn't fall off, and she left me cancer free. Truly amazing. The result of having no thyroid and my kind of cancer is that you take thyroid replacement and enough of it that your pesky body doesn't try and regrow cancer growing thyroid cells. Tada! Hyperthyroidism! Side effects include- irritability, stress, increased appetite, insomnia. (Notice I've left out weight loss, I don't have trouble with that side effect)
Now I also have another pain in the ass issue that hasn't been much of an issue until this year, and that is a seizure disorder. The number one cause of break through seizures is lack of sleep. Some other high up causes are not taking you medication, stress, and not eating correctly. The side effects of the medications that I take for this are- irritability, anxiety, lack of taste sensation, insomnia, anger and stupidity. I'm not kidding. They don't actually use those words on the websites but the words most affectionately associated with my meds are "rage" and "dope".
None of these fancy aspects of my life let you sleep which is why I am up right now bitching to the wide sleeping space of the web. So here I am with my interesting problem, I'm hungry but food doesn't seem as appealing as it once was, which adds to the irritability because I'm freaking hungry and I can't get to sleep which stresses the crabby mom even more and the circle continues because I am still hungry and by goodness I am so bloody tired and the kids are going to be up in 4 1/2 hours and what I wouldn't give for a bag of gummy bears and I am just so tired and tired of being a crab and tired and tired of be stressed about being tired, when oh when does this merry go round stop?

And how fucking lucky am I that eleven years later, I am waking up cancer free to look at my beautiful children. One of the luckiest women in the world.



We joke a lot about Kiera's future. Girl can talk a stranger out of their savings without their noticing AND she works a pole like I have only seen in the movies. It's not hard to joke about the myriad of professions my strong willed (and legged) little blondie might get herself into. She'll be OK, with some (OK a ton) of guidance, she'll be OK. I was OK. A different kind of OK then I was after I met Dave, but still OK. You see, Dave had his shit together when he met me. I didn't even know what that meant. I had gone to college with a good GPA and scholarships but the discovery of a seizure disorder and my dads ALS blew that all to hell so I failed (or tried) myself out and came home. Got a job I loved that didn't pay for shit, and did my best to keep my head above water while I literally got my affairs in order. The benefit of having friends who had suffered tragically similar loss is that they tell you how to do it as well as you can, so that is what I did. I adjusted to new meds, learned how to pay my own bills, and watched my dad die. I can say looking back that I think I did it right, I said everything I needed to say and did the best I could for him, so who cares if I never learned how to return a movie on time. The point is, the important stuff, the stuff that really mattered, got done. I was OK. Broke, a bit reckless, but OK. Kiera will be OK. She is a little version of me with hopefully enough of Dave mixed in that she wont trash her credit rating by the time she is 19. We don't joke about Ben's future. It is no joke. We don't even talk about it too much. Those are serious conversations, set aside for serious times. Where is the money going, who will have responsibility, who can best manage if we are unable. Like I said, serious conversations. Part of the reason is that we simply don't know what we are dealing with. We have no idea where his life will lead him and we never have. How do you plan ahead for a child when the doctors say he will never hold his head up, then he does. You plan, but with every plan you make contingency plans. So, he has a college savings account but it is the kind that can be withdrawn and used for things other than college because WHO KNOWS. He has never performed below grade level academically, but he's in third grade. I have been playing catch up with school for years now because it turns out, when  you drop out and go back 17 years later in a totally different field, you pretty much start over. I went in to campus today and watched a kid walk in ahead of me with a gait that looks all too familiar to me because I see it every day, and I started to think about how many times I see this gait around my little community college. Then I saw it again. Walking into a different building, another kid who in 10 years could be my kid. Who knows. By the time I made it to the computer commons I was deep in mind fuck (where I try to steer clear) wondering about these guys I'd just seen. Who are they? What are their issues? Where do they live? When I had a seat next to an older gentleman who, guess what, had something going on. It's like the day in the grocery store when they want you to buy comfort food so they play every sad song, today was the day that I had some thinking to do I guess. This fellow held one arm at a distinctive angle, had the hand of that arm folded in a familiar way, had a thinner leg, had one ankle bent in Ben fashion, but corrected all of these positioning issues to make use of the computer and pull around his used physics book. I did my work and busted ass to my car where I burst into tears. Not because [...]

"What do you want?"


"So what so you want?" I would like a large order of deck that is not rotting off the back of the house, ready to fall off at any moment...a roof that isn't leaking directly into the main bathroom AGAIN since we just replace the entire roof a few years ago...hmmm...a furnace that doesn't miss fire and run endlessly without heating...and a side of non-dripping kitchen faucet. Oh, and can you add door knobs for the front and back door that actually have working mechanisms so we can use them instead of relying only on the dead bolts? For dessert I would like a ramp and hand rails on the front porch and an adapted bath. Thanks. Dave was actually wondering what I wanted for dinner. "I know," he says. We got Chinese. Every one of these things are on "the list", not the little can be tackled today list but the BIG list. This list has to wait, for what, I'm not sure. For a windfall. For us to finish paying off old debt to make new debt. For me to finish school to get a job. For me to find some spring of inner motivation that drives me to refurbish and...We'll let that thought lie. I'm not a carpenter so even given proper motivation, I'm not going to build a deck. Motivation could take me a long way though and I have been doing some searching for what it is going to take to get it back. Where did it go for that matter? If the question was properly worded (where did mom's energy go?) my kids might tell you it was sucked out of me. They have heard me say it feels just like that when they are forgetting to love each other. That is exactly what it feels like when my little family, which is so "normal" in so many ways is just not "normal" in any way. I get it, parenting is hard. There are no instruction manuals blah blah blah but there is no place for those of us who don't fit to carve out a niche and get comfy. There is no down time to get your bearings and fix your brain so you can deal with things like door knobs. How can you explain to anyone that Ben's day yesterday was so exceptionally exhausting. How many times I was right there molding the day to make it manageable for him and us because I knew he was so excited that it was his dad's birthday. The amount of effort that it takes to make our world feel effortless is crazy. Maybe that's where my motivation went. Every now and then Dave and I have a conversation that takes one of two turns. The first is when Ben has had a  particularly hard time around other kids and Dave is reminded that Ben isn't a typical third grader. The second is when Dave completely forgets that Ben is anything but just another regular old kid. Both conversations kind of break my heart. I think we have these conversations because Ben has different levels of interaction. Dave sees snippets of the day so sees different sides of Ben. I however, sit more square in the center. Seems like a more balanced place to be, but that's just it, its a balancing act always. I guess that's what we all do really. It is this crazy balance between need (you do not actually need working door knobs and the deck hasn't fallen off yet) and creating a warm loving home for our whole family (water dripping on Kiera's head in the bathroom doesn't count). It is so crazy important that Ben get what he needs to thrive in this brutal world that he has been thrust into but he has this wonderful, brilliant, strong, opinionated little sister who needs him to show her the way through it as well. Back to motivation...Haven't gotten very far on that one, but I have begun my effort to reduce brain clutter. You're looking at it.[...]



Warning: for the possibly one person who has checked back now and again to see if we have fallen off the grid (we have not), this blog may be coming back to life. It may be awakening a different beast than it went to sleep though. For instance, this beast says fuck a lot more so if you're not comfortable with that you may need to cover your eyes from time to time. You see, I am not the mama of a struggling baby boy with CP, or the mama of a special needs son and a new baby girl trying to do it all with glitter on top anymore. I'm the mom that has tasted the agony of new moms crying on my shoulder because that used to be me. Fact is, that old me who was so terrified, learned so much that now I get to pass it on. Fact also is, I am no more comfortable with the road ahead of me right now than I was with the road ahead of me seven, six, or five years ago. But I'm harder. I'm tougher to sway. I know what I am fighting for and I will fight for what really matters for as long as it takes. I also know that what really matters is not all that I thought it is to be.
So while this place is still Life with Ben, it could be called Neither Rhyme Nor Reason, or There Are No Rules, or There Is No Such Thing As Fair, or We're Just Making It Up. It's not all about Ben, or Kiera, or Dave, or even me. As the writer, a good deal of it is about how I feel about all four of us though. This is about how we have evolved into this extraordinary thing. This family that yells, and plays, and loves so much. Goodness we are a disaster. A mess of a perfect disaster and right in the middle is me, the grand master of of this mess (it's OK, Dave would want to claim the non-mess part). I, my dear am a mess. Not the mess I anticipated either. I thought that I would be the kind of mess that was covered in paint, not the kind of mess that didn't have her shit together at age 38. It seems utterly impossible that I am 38 and things refuse to settle down enough to catch hold of. And for the cherry on top, I have had two seizures (totally my fault-meds don't work if you don't take them) in the last year. My health being at risk puts a pretty huge crimp in the already crimped family health dynamic. The last one was a bit dramatic and has prompted a four month long med change. Med changes are no good for anyone, least of all me.
So here we are, Ben is going to be nine. Nine years old, and Kiera will be six and it has slipped past in a dizzying array of appointments and therapies and classes and play time. It is truly no wonder we walk around looking dazed, its is whiplash. Whiplash with a heartbeat.     

Being The Grown Up


It goes in waves. Parenting is not a simple cycle of learn, apply, succeed. More like maybe learn, trying to learn, ah ha! got it, wait maybe not, oh OK think I've got it now, attempt to apply learned information, forcefully try to apply said information, back up re-learn, subtly adjust to insert information, see things respond to use of gained knowledge, take half a breath then WHAM the lesson is over and we are on to another subject. It's like living through calculus just to find that the test Friday is actually on art history.

So we try. And try again. And keep trying but to be perfectly honest, sometimes I don't want to try. Sometimes I wish I wasn't the grown up and didn't feel the immense pressure to instill a love of self, others, learning and food all the time. Every day, all the time. It is simply exhausting. Rewarding (you hope), but exhausting.

It’s on those days when it doesn't feel all that rewarding that you dig deep and pull rabbit out of the hat to make the moment the best it can be or you dig a nice deep hole under your own feet. We happened to be going through one of those floundering phases and our hole was getting rather deep. The giant hole seemed to act as its own accelerator and it took both hubby and I, stopping at the very same time to figure out that we were the ones digging it. That we are, whether we like it that day or not, the grownups.

It was the wakeup call we needed (this time) that the subject had changed and we were in fact trying to speak Spanish to pass chem.

We're changing the game (again) and finding yet another new normal. Because we're the grownups and they are SO worth it.




Make pinewood derby cars. Volunteer meeting. Preschool. Physical therapy evaluation. Dance class. Cub scouts. Derby race. Touch base with mom about coming to cover conference time. Parent teacher conference. Ben to primary (pink eye). Go to Auntie Kier's for afternoon. Kindergarten Information Night. Preschool. Ben to Peds Orthopedic Surgery (subluxed hip/stable!). Ben IEP. Shan haircut. Ben PT. Play date for Kiera. Ben hippo therapy. Shan class. Assist for Kiera's preschool. Dave's work happy hour. Soccer clinic. Art class. Maple syrup nature program. Kids to Nana's. Wedding/reception. Play date for Ben and Kiera.

Why, what does your week look like?
; )

What to do?


Or rather what not to do! This is such a busy time of year, no scratch that! Life just keeps getting busier. At the beginning of the school year Ben joined Cub Scouts. I was a Girl Scout so when the flyer came home last year I mentioned it to Dave and we did the classic chat-and-delay. For those of you who are not familiar with this tactic it is our default setting when we are unsure if we are willing to cross another "new thing" barrier. I'm sure that someday, someone will come up with a super scientific formula for deciding on "new thing". This formula will no doubt include; monetary cost, time factoring (including travel), pre-"new-thing" research (including receptiveness/supportiveness of new adults and children to special needs), emotional expense to parent responsible for doing the pre-research, emotional/physical expense to parent actually taking on "new-thing", increased alcohol bill due to "new-thing" stress, measure of effect on "well he gets to (blank)..." argument from sibling paying attention to the balance of "things", the overall accessibility of "new-thing" and the ability of "new-thing" to fit into the already crazy week. BUT until they come up with that super scientific formula, it is sometimes easier to chat-and-delay and if it comes up again, we pay it closer attention. So a year after we saw the flyer, Ben joined Cub Scouts. He LOVES it! I'm not sure why, but he really loves it and so far his Den has been fantastic to him and us. This addition to our schedule has Dave and I doing the divide and conquer so that Ben can make it to Scouts and Kiera to ballet. Toss in two nights of Therapeutic Riding, a night class for me, homework for all of us and we're booked. In the last week we added an overnight visit from Uncle Keith, a Hoedown at Ben's school, Dave's Birthday, kid's overnight with Nana, Christmas lights, 2 teacher birthdays, volunteering at both kid's schools, book order coming in (my co-op job), 2 evening Holiday parties, a field trip, a volunteer meeting, a school project for Ben, a research paper for me, zumba class and we haven't even made it to the weekend! We're busy. And now we need to make plans for next semester. What to choose? Add another class for me (goodness knows I'll graduate in time to retire at this rate)? Add a swim class for my human rocks? Take away a riding night? Drop yet another volunteer group? Add some exercise for me? Breathe? Have a conversation with my husband? What do you choose? How do you choose? How lucky are we that we get to choose? (image)

Finding A Grove


Well, it is November and it seems that we have found our grove. We can make it to 2 extras a week (ballet and Cub Scouts), 2 therapies a week (both therapeutic riding), two classes for mom and get all of our homework done! AND we are all wearing clean underpants! It took us a couple of months but we seem to be getting the hang of the school year. Now, if only everyone else could get with our grove, that would be great. It happens all the time, I begin to feel like I'm getting it and then someone comes along who doesn't get it. It is frustrating, to say the least. Yep, I know that Ben spends part of his day looking as if he has checked out of his body. And by the way, so did you. I really don't need you to tell me how frustrating it is that Ben's body language is screaming, ignoring you! I know. I'm the mom. It's been driving me nuts here for, let's see, SEVEN AND A HALF YEARS! Remember when we had that meeting with everyone and we talked about how mentally exhausting it is for Ben to just sit and breath, let alone process and retain info? Well, this is where you apply that information. Remember that part of the paperwork that stipulates allowing Ben repeat instructions and increased processing time. Now is the time to re-read that part. Did he know the answer? Has he replied incorrectly on any question you have asked him? Well then, he is listening, even if you don't like how he goes about it. I know that I should just let it roll off my back. I should remember that if he wasn't such a bright little guy who constantly resets the expectation of others, people wouldn't care if he looks like he has left the building. Just remember folks, he hasn't left the building. He hears you, that means everything you say. He has a harder job than you and he may even be smarter than you. Goodness knows, he is probably smarter than me. And by all means, get with our grove. Cause we rock!

Been A While


So... It's been a while. A long while. Like so many things in my life, blogging has been pushed aside. It may have been the easiest to let go even. No one (well a couple folks but you know) dumping undo guilt or disappointment at the lack of posts. No stern reminders that my work is late. No GPA slipping into the red. You know what? No glaring stains pop up on the carpet if you don't blog. It was easy to step back when I realized that I had come to a point that my blogging wasn't doing me, or anyone else for that matter, any good. I actually got tired of bitching in print. So I stepped away and turns out, I still bitch, but to people that I can touch. Seems that bitching may be where I am in my life, or it could be the Keppra but that is a whole other ball of wax. We had such a fantastic summer... We went to Illinois for the high school graduation of our niece and college graduation of our nephew. Ben and Kiera got their first ice cream from an ice cream truck.We said goodbye to Ben's fantastic teacher of two years.We went strawberry picking.We saw my niece graduate from Middle School.We camped on Lake Michigan.We played in the parks.We rode bikes. Kiera learned to ride without training wheels (thank you PEAC). We spent the 4th in Tennessee with Dave's familyWe went to Red River Gorge and Ben hiked the trail to Natural Bridge. He hiked it.We visited The Big House.We played with our neighbors.We pub crawled (OK, that we just me).We went to a beer fest (OK, that was me and a few much loved grownups).We camped again.We swam with the neighbors.We celebrated two weddings.We went to a cheeseburger fest and camped again.Ben went to camp.We camped on Lake Huron.We went to Children's Museums.We went to Zoo's.Ben rode horses. Lots of horses.We started school. Kiera left my side for the first time.Dave and I went to Key West.Ben joined cub scouts.Kiera went back to ballet.We camped again.Ben climbed treesWe went to Wisconsin.We went to orchards, pumpkin patches and corn mazes. The most important part of all this rambling is "we". We found amazing, fun and wonderful things to do WITH amazing, fun and wonderful people. These people in our lives, these wonderful, thoughtful, fun and funky people that are our family and friends are part of the glue that makes us work. I miss this though. I miss knowing what is happening with your families and I miss having the record and outlet that this provides. I miss being able to say "Ben's school environment sucks! I wish I had the cash to bury the district in lawyers until they actually did what is right for children with different needs! Who makes a freaking NEW playground inaccessible and takes away handicapped parking!" because you just can't say that stuff on facebook :) I guess we'll just see how it goes. [...]



(image) so much to tell, so little time...
if only I could blog from my phone...



Ewww! What a funky time of year it is for me. There are things missing from this time of year for me and things that are being accomplished as well. It seems that I am simply not as good at covering my bases during the winter. For example; I can get the ball rolling on improving Ben's current school situation BUT can't plan swim lessons at the same time or I can initiate cool activities BUT can't remember to take pictures to capture the evens or I can talk on Ben's behalf BUT can't keep up with my friends. The list may or may not be longer (I don't know because I keep losing it :)) but it sure seems to require singular focus. Is multitasking easier for me when the sun is shining or is my winter list just that much more complex? Don't know, but it was 39 degrees yesterday, so I have hope! Some cool things: Ben and I sat down with the Kindergartners at his school and talked to them about CP. We were invited to do so when it became clear that a number of children thought that Ben had broken legs that were not being fixed. ("Mom, can we just bring in an x-ray machine and then fix Ben's legs for him?") I read a letter to the groups, then Ben fielded questions. It was pretty cool to hear the questions they had (How old were you when your brain got hurt?, Will CP get worse for you?, Can you run without your walker?, Does it hurt?, What do you like to play outside?, Can you play tag with me?) and even more cool to hear how Ben answered these questions. After the first group Ben said "Thanks so much for coming mom. I did it!" Yay! Another cool thing is that I was able to meet with some folks at school (speech path, social worker, psychologist and teacher) to talk about the teasing and unhealthy interactions that are happening in and out of school with school kids. Good news is that I have been there a lot lately (happy side effect of my work hours feeling the financial crisis) and shared my observations with folks so they came to the meeting with some observations of there own. We all agree that the dynamic in the room needs a boost so we are working together on a school wide positive school program that will address these issues AND they are bringing folks into the room for large and small group activities to work on a positive environment for everyone. You can already feel the attitude shift. Fantastic! (I am leaving out a really ugly side of this 'cause it is not meant to be that kind of post :)) Among the greater things to come out of the hubbub with school building move (we are moving, it is not good), is that I have connected with a mom who is fighting for her little guy too. We are dealing with some different issues but we have each others back on the issues and she is not afraid to squeak, as loud as she needs to and she is all about squeaking for both of our boys. Nice to have her next to me when the pressure is on. There are all sorts of good things that are happening that have nothing to do with changing school climate but that will have to wait for another post. I will leave you with the letter that we read to the children (not sure how this hasn't made it here yet). This letter was passed to me (with some modification of course) from a CP mom who got it from a CP mom get the picture. The child that this "Kindergarten letter" originated from is in high school now. If you can use it, please do. Hi! I’m Ben **** and so far I’m really enjoying being in Mr. ******* Kindergarten/First Grade class with you. Sometimes [...]

Where My Time Goes...


When I should be focusing on Birthday's, preschool choices and spring sports, I am instead touring the building that Ben's school is proposed to move to. I was a lucky one, I actually got a tour and with the Director of Special Ed and the current principal no less. I even had a moment to chat with our Superintendent. This is the letter I just sent to our Board of Ed.- I am writing to you today as a mother. Specifically, Ben's mom. Ben is a little guy that you probably have not met, but can’t miss in the halls of (our school). He is the one tearing through the halls with his walker, flashing wheels and all. Ben has Cerebral Palsy (CP) resulting from a significant brain injury some time around his birth. He has low muscle tone, impaired balance and impaired coordination. Ben uses his walker for long walks through the school and any other time that he is fatigued (which happens often to children with CP). Children living with CP work on a different schedule than their peers. In Ben’s case, it takes months to gain stamina, learn and maintain motor patterns and recover from muscle fatigue. This is just one of the reasons that I am concerned with the move of the Multi-Age Program to a multi-floor building. Walking distance is not the same as stair distance when is comes to physical endurance. I have heard comments like “children adapt”, “he is a strong kid” and “he is so determined”. This is all true. What is difficult for people who don’t live with a person with CP to understand, is while this may be a transition that takes a few weeks for the majority of the transferring students, this will take months for Ben. Months in which he will have to concentrate his energy on his mobility instead of second grade. Months in which he will stand out from his peers because he can not keep up due to waiting for an elevator, struggling with stairs or simply because the walk is so far he is exhausted. It was suggested to me (I truly believe with no ill intent) that children that needed to utilize the elevators in the past have loved the novelty, have felt special because they had a key and loved that they got to leave class early to transition in time. These children referred to were dealing with a temporary situation (broken leg was an example). This is Ben’s situation for the rest of his life. If there is one thing Ben is aware of, it is that no matter how much he wants it to, his body doesn’t work like everyone else’s. Ben is in first grade and he knows that he is missing things in his class because he has to leave three minutes early currently. What happens when he has to leave twelve minutes early to get to music at (the proposed school)? It was suggested to me that possibly a more direct route to music would be to take the elevator or stairs to the first floor, walk through the first floor then WALK OUTSIDE, AROUND THE SENIOR CENTER, INTO THE BUSINESS OFFICE to the elevator closer to the music room. Shame on you for suggesting that my seven year old take his walker outside in the middle of winter to better access a class. When I expressed my concern about feeling the need to choose between this fabulous program that allows for his strengths and weaknesses and his physical well being, I was told that “it would really be too bad if I felt that I had to send him somewhere else.” It felt like, take it or leave it.Ben has found great success, freedom and independence [...]

I know, I know


I know! I need to find a happy place to post from but for goodness sake it is January! In Michigan! I have even held off from posting because I have too much whining to do :) So to get this off my chest... The front seat of the know, where Ben's adaptive seat is strapped down and he is strapped in? That's the one. Well the extra spot next to Ben SHOULDN'T BE USED AS THE "IN TROUBLE" SEAT! Ben should not tell me that his friend didn't get to sit with him cause "blank" was in trouble and had to sit there. How is the seat my child (that is too strapped down in to get in trouble) is sitting in, THE TROUBLE SEAT??? Come on folks! Think! That's just rude! Just in case you didn't know, it's not nice for your children to get together and yell "Hey Ben! Bet you're too slow to catch us!" then run away. Stop them! It is mean! And I don't give a f&#@ if Ben is smiling. It still sucks! Back to the bus (love the bus) when kids say things ranging from "Ben can't get out of his seeaat" to "Since you can't walk down the steps very well, you should try to fly!" it is not nice. Stop them. Then tell me so I can give him a mental band aid when he gets home. Don't think for a second that it is OK to threaten Ben with taking something away (including therapy! No joke, it happens) if he is having trouble controlling his body and getting things done in a timely manner at the same time. HE HAS A REALLY GOOD REASON FOR NOT KEEPING UP, IT'S CALLED CP! Please keep your ears open for what children are saying to him and give me a heads up. I hate to hear "I'm just too slow to play", "I guess I'm just not strong", "Mom, I don't think I am strong enough to be seven", "Maybe my legs just have to be crooked", and "I want to go to the hospital so they can fix my brain" but I really hate it if it is stemming from school talk and I am the last to know. By all means, look at him, correct his behavior if he is not following directions, love him, expect a lot of him! But please folks, gain control of your behavior and don't make this harder for him. Thank you. I feel a little better.