mama bear

It’s midnight and Jordan has been asleep for three hours. In that time, he’s sleep-walked into the living room where Jim and I were watching TV twice. Each time there was a sense of panic in his eyes and he was talking about whatever dream he was experiencing through tears and the obvious confusion that comes when you’re walking around dead asleep. As funny as his sleep-walking and talking can be at times, this one has left me feeling gutted. 

It’s been a tough week for him. He was sick earlier in the week, but then he got well enough to attend a going-away sleepover party last night for a friend who is moving. It was a big step for both of us- his first sleep over with more than very close family friends and definitely his first large group sleepover. It wasn’t the best experience for him- some of the kids were very rude and treated him unkindly- but I was so proud of how well he did. The mama bear in me wanted to go and do what mama bears do when he told us how things went, but Jim and I know that this is part of life for all kids. We just need to do our part to teach him how to maneuver this time in life and trust that he’s going to be okay. (Within reason. I’m still me and can still go full on mama bear when I need to.)

After we picked him up from the party we went to a family BBQ with lots of people, stimulation and more opportunities for his anxiety levels to rise. The BBQ was at a house on a small cove on the lake, and Jordan’s big sis and her friend floated out into the cove on a giant float-toy. Jordan decided to go in the kayak to “rescue” them and, even though he’s gotten into that dumb kayak 20 times without tipping it, he just couldn’t do it today and kept tipping it over. It was so frustrating for him, but he was trying to rush so much to go and save the girls. He didn’t like them being out there without a rope or way to get back in. Some of the family was watching him struggle to get into the kayak, and of course it was comical, but to him it was far from funny. I could see his struggle- wanting to rush to get out there, feeling everyone watching, being so embarrassed that he kept tipping over. It was just an overall tough time, but again, Jim and I were so impressed with how he handled himself and how he bounced back so quickly. 

When we got home, he was so exhausted he just conked out. It’s been quite a while since he’s done a lot of sleep walking. I know being as tired as he was is a big part of it, and anytime he’s had a lot of anxiety he’s really a sleep talker. I can’t get the kid to give me three sentences about his day while he’s awake, but if he’s sleep talking I know it was a doozy. 

After his second time up tonight, we couldn’t get him to settle down enough to get some peaceful sleep, so I just decided to go to bed with him and try to keep him calm. In the time it’s taken me write these few paragraphs, he’s wrestled around three times and told me “We just can’t stay here any more. These people are not okay!” “We have to go. They don’t want us here and they’re just going to keep hurting us,” and “It doesn’t matter how nice you are to them, they will just keep trying to hurt us. This is a horrible place!” This is the same thing he’s been saying for the last two hours. 

I don’t know what he’s dreaming about, but as I lay here comforting him the knot around my heart just keeps tightening as the tears stream down my face. Maybe he’s dreaming about a video game. Or maybe the tension and anxiety from the last few days while he’s been holding it together so well are finally finding a way out. 

I know that nothing that has gone on in his world is so horrible. Kids feel left out at parties all the time. And I can’t count the times I felt the red heat of embarrassment creep over my face when someone laughed at a clumsy mistake I made as a kid- or even as an adult. This is life. But when you’re an incredibly sensitive kid managing more in life than the average person, it just sucks a little extra. And when you’re the mama bear of that kid, you just feel a little extra mama bearish too.  

Here’s hoping the nightmares end and peace can settle on his tired soul tonight. 

so i guess this could be the end

Jordan says he’s quitting football after this season. He didn’t say it flippantly or because he had a bad game. He said it like he’s been thinking about it for days and finally just spit it out because he couldn’t take it any more.  He said it even though he knew my initial reaction would be disappointment.  He said it because he genuinely doesn’t want to play his favorite sport anymore.

I need to say that out loud, but I can’t yet.  Not because I am a crazy sports parent that thinks my kid is going to go to college on his athleticism. Not because I think he’s the best thing to ever happen to football, but because football is the best thing that’s ever happened to him.  Until now, football was the one thing he didn’t struggle at more than the average kid.  During the football season, he has always excelled- in school, at home and on the field. His confidence has always been on a whole new level from July through October.  Putting his pads on and stepping on that field brought a light to his eyes and a swagger in his steps like nothing else I’ve ever seen for him.

And now that light is gone.  As stupid as it might sound, that hurts my mama’s heart.  It’s just really hard to see your kid lose his passion for something that he genuinely loved, and know it has very little to do with him, and much to do with a lot of things beyond his control.

Having a kid with Aspergers is never easy. It’s a constant dance for me – don’t be too easy on him, but definitely don’t be too hard; don’t make excuses for him, but be realistic; be patient, but for godsake don’t let him just run me over.  If I, his mother, trip over my own feet, of course I can’t expect his coaches or teachers or friends to be any different.  I guess that might be the hardest part.  I sure can’t keep him in a bubble, but putting him in situations where I have to trust people I’m not sure I should is exceptionally tough.

I know his confidence is more fragile than the average kid. He might pretend like it’s not- like he’s oblivious to things that others aren’t, that it doesn’t affect him the same, but it does.  He sure as hell won’t talk about how he’s feeling, until he does. And at that point, his mind is made up and the stubborn determination that he’s doing what he just told you he’s going to do settles in.  And so now what?

When I told him we could just switch teams next year and start over, he told me “it’s too late. I just don’t belong playing football anymore. It’s just not my sport like I thought it was.” And my heart broke. Because it’s just not true, but I don’t know how to convince him of that.

My morning has been spent trying to figure out how we come back from this. Listening to his dad fight back tears when I told him about our conversation. Trying not to be angry. So I come here, because this is where I always go… when I can’t say the words out loud.

 

week one.

Jordan has been on a minimum dose of a common stimulant treatment for ADHD for one full week. Jim and I just keep looking at each other shaking our heads in disbelief. The child we see is such a dramatic difference than the child we are accustomed to I can’t even tell you. The positive changes are really remarkable. The side effects are actually very minimal to this point.

I decided to keep a log of all of this for two reasons. One, I want to be able to look back on this for us and for whatever use we will have. Two, once we are comfortable with where we are in this process and how Jordan is doing, I want to be able to share our journey with other moms and dads and caregivers. As we sat in our IEP meeting today, one of the counselors told me I should keep notes so I can share one day with others. I just giggled. She doesn’t know about my compulsive writing of all the details. Ha.

So, as I said, week one has been mostly euphoric for Jim and I. The doc told us we should see results of the meds within around three to five days, but that some effects could be seen right away on day one. So we were hopeful that we’d see some little something on day one. We didn’t expect it, but we said we thought it’d be great if there was something.

I gave him his first dose, told him of all the things I wanted him to pay attention to in his body while he was at school, and I put him on the bus. Just like any other day. HA! Then I emailed the teacher, his primary counselor and anyone else with a pulse at the school and asked them to be watching him closely. “Watch for tics and increased stuttering. Watch for fits and aggression. And for God’s sake please let me know if he looks like his pulse is racing.” Or some version of this.

Jim stayed close to home and worked on some projects. I think he mostly just knew I was going to drive myself nuts all day worrying and wondering. I walked to the bus to meet the kids and waited anxiously for him to do his usual descent from the steps and run my way screaming and wildlike. He sauntered down, strolled my way and gave me a nonchalant “Hey mom, what’s up?”

What the WHAT?!?! Who was this child?

He spent the better part of the last week being himself, but a little more chill and a lot more “I can’t put my finger on it but something/almost everything about that child is different in a very good way.”

We were around 5 weeks worth of homework behind. It’s not that we don’t work on homework with him every night, it’s that it takes so long we just can’t keep up with the class. This week, we did one week’s worth of work each night. Yes. We are now caught up. And he wanted to do homework. He asked to do it. He was proud of his work and he mostly understood what was going on. It honestly felt nothing short of miraculous.

The downside? He can’t sleep as well. At least the first few nights he really couldn’t fall asleep for hours. It took its toll on him. He has been taking Melatonin to help him fall asleep for a few years. We made sure with the doc that this would still be okay and continued as usual. Night one I had to triple his dose to get him anywhere close to falling asleep. No biggie- he wasn’t taking much to start with. It’s still a healthy level. The last few nights, it hasn’t taken as much.

The last few days have had a few changes. He’s still pretty level. The only difference I’m seeing is more of a “sensitivity.” He’s a little crankier than usual. He has had a couple of meltdowns when he doesn’t get his way, which wasn’t happening the first few days of meds. It is pretty typical from before meds though. I almost feel like his body/brain are getting used to the meds and they aren’t working as well. But, he also has a cold and it’s been a very long week of working double time on homework catch-up and his body getting used to this new normal. So I could be wrong. It could be anything. That’s why the doc has asked us to wait a month before re-evaluating his dosage. I’m sure there’ll be plenty of ups and downs.

So far, I’m glad it’s mostly ups! No side effects except the decrease in appetite (we are not concerned about this one!) and the sleep thing. So far, so good.

when lightning strikes

Follow me on a little journey if you will…

A beautiful, well-organized, and lovely woman with a smoking hot body is on a relaxing stroll in the sunshine through the park. She has her perfectly behaved children and adorable puppy with her. The love of her life is off working at his perfect job and enjoying all that life has to offer. All of a sudden, storm clouds roll in, thunder booms in the distance, a downpour begins and the woman is suddenly struck by lightning.

Replace the woman above with an average looking, occasionally-organized, paunchy mom in sweatpants; the perfect children with unusually maniacal deviants; and the husband with a typically stressed and exhausted dad and you’ve got our life a year ago. There we were, walking through life with its usual stresses, but mostly just living a wonderful existence as a family. Then one day, lightning struck- figuratively, not literally. Don’t worry.

If you used to be a regular reader of this blog, you’ll know that aside from the occasional “OMG I have to get this out of my head or I’m going to burst” posts about my children, I have been mostly MIA for the past year. My profanity-filled, snarky and sarcastic bitching about our silly life have pretty much dried up. I have recently received a few emails asking me “where the hell are you woman? What is going on?!?” Thanks to those of you that have wondered about me and asked. That means a lot!

Everything is fine at our Improper home! It’s just that, well…I got struck by lightning! This time last year, we began to realize that Jordan was having some learning issues at school. We were working hard with him to keep him caught up, but it became more and more obvious that more than just the “little boy wiggles” and distractions were keeping him from keeping up. In kindergarten. You’ve read this before, I won’t go into it again. Jordan has SPD, ADHD and an alphabet soup (as other moms so aptly put it) of issues going on that hinder his learning and behavior.

For a lot of people, this is no big deal. For me, it was truly like getting struck by lightning. I’ve been feeling the “after-shock” for a year. We’ve all been relearning how we live life. It’s not a big deal. Except it really is a big deal, for me at least. I’m a perfectionist. I need life to be perfect. When life isn’t perfect, someone freaks out. That someone is usually me. So basically, I’m always freaking out inside. Because when the hell is life ever perfect?

That’s not actually totally true. We’ve faced a lot of obstacles in our life together, Jimmie and I. Life has obviously never been perfect. We’ve faced all the usual situations- having babies, losing jobs and careers, being so poor you don’t even want to know, making questionable-at-best decisions, facing some pretty serious health conditions, being poor again, you get it. For me, none of that compared to having a life-altering situation to deal with in one of my kids. All I know is, thank God it wasn’t more of a health concern. At the time, I would have had a hard time handling it.

All of my days that were previously a leisurely time spent making our home and browsing blogs and socializing and being your average spoiled homemaker are no more. I have become obsessed with finding solutions to this problem and that; running to therapy appointments; reading books, blogs and articles on how to help with this thing and that thing, working with the school and teachers and counselors on what will best help which part of that piece of the puzzle and so on, ad nauseam. I’m obsessed with giving my son his best chance at life and a successful future while at the same time giving both my kids (and their dad) the most normal and rewarding home and school and social life I can. Basically, what I’m telling you here, is that my brain has been focused on one thing and one thing only for the most part- fixing this (unfixable) problem.

Most recently, I’ve been on burn-out. The “throw my hands up in the air, nothing is working, no one can fix my kid, I give up” type of burn out. It’s stupid. So, here I am to find balance. I want to help my kid. I will keep running to this thing and that and reading and researching. But I will also make time for me and friends and my husband and fun. And I will make time and space in my head for writing. Because it is, as usual, how I get the crazy out.

You’re welcome to walk away from this blog right now and never look back. It might actually be recommended. I know it won’t always be funny. There will be too much mommy talk and not enough cocktails and bunco. If that’s not okay then I understand. I won’t be mad. Thanks for being around for the journey up until now.

 

 

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should i make a pencil bouquet or a xanax cocktail?

This time next week, I will have just tucked my kids into bed in preparation for their first day of school.  This time next week, I will be an emotional wreck.

As internet friends all over the country have been sending their babes off to school this week, I have been watching closely.  I’ve been reading their posts and emails about feelings on loosening the cord and saying goodbye for seven hours a day.  I’ve also been reading article after article about easing the transition and offering the right kinds of support to the people we are sending off.  Some might say I’m working myself up over nothing.  I say, I’m arming myself for the battle.  “What the hell is so stinking bad about sending your kid to school?” you ask.  Nothing, I guess.  For most moms.

I; however, am not most moms.  Among a myriad of personal issues too neurotic to name, I’m also a mom of a kid with Sensory Processing Disorder.  You may be wondering what SPD is.  You may be rolling your eyes and guffawing that another mom is buying into another “disorder” to make excuses for their bad parenting.  I know there’s plenty of people in my life happy to have that same response.

For those of you eager to pass judgement, save it.  Just save it and keep moving on.  For those of you wondering what SPD is, it’s a neurological condition that makes it difficult to process and act upon information received through the senses, thereby creating challenges in performing countless everyday tasks.  To the average person, the child may look like an incredibly shy introvert that hides under her mom’s skirt and refuses to play at recess, or he may look like a wild maniac that bounces off the walls, runs over the other children and refuses to settle down and obey even the most basic classroom rules.  (Some children that look like this, simply are those things, and some children aren’t.  It’s up to parents to investigate and decide what category their children are in, and I’d happily support all parents in their decisions.)

Just like thousands of other parents in my position, I’m anxious about many things as the beginning of the school year approaches.  Have I been too lax this summer and created a monster for his teacher?  Will he be able to grasp a new routine, new rules, new environment that is different from last year’s?  Will the support the school has promised in order to help him succeed truly be there?  Will he come home every day with sad faces on a report regarding his classroom behavior?  Will his report cards hold all ones and twos or will he be on “grade level” threes and fours?  How the hell am I going to do this?  Am I a failure as a mom?  And a thousand more questions just like these.  On a loop.  In my head.

More than anything right now, I hear these words: “Do not let that school put a label on your son. It’s not worth it.  You know he’s a good kid.  He’s just a little boy.  Don’t you dare let them label him.”  As much as I have struggled with the decision, I have let them label him.  Do you know why?  Because I’m not too proud to let my son get the help he will desperately need to succeed throughout school.  Do you know what the label means for my son?  The label means the difference between him growing up to be a tow truck driver or an engineer if he wants to.  (Not that I would have a problem if he wanted to grow up to be a tow-truck driver.  God bless the tow-truck drivers.  But if he wants to be an engineer, then he should have that opportunity.)  As much as I know in my gut that I have made the right decision, because I know my son, the people in my ear that don’t agree with it, wear me down and make me question myself.  I’m not proud of it, but it’s true.

And then I remind myself: that label, those extra classes and the special seat he gets in the classroom?  Those are the difference between success and failure.  The therapy he receives?  That’s the difference between learning to read fluently by the end of the year, and it taking until fifth grade to read at a first grade level.  That file? The one that they keep in the office that says my son has special needs?  That file doesn’t mean shit to me, except that my son, the one that I am responsible for, he gets to have his best shot at life.

I cannot wrap my mind around stubbornly refusing my son his best shot at life just because I am too proud to let someone evaluate him and put a label on him.  If every time he ran around the track in PE he turned blue and couldn’t breathe, would I refuse to let a doctor check him for asthma?  If they found he had asthma and I refused to let him have medication to treat it, would I be a good mom because I wasn’t letting someone label my son as an asthmatic?  Would I be teaching him a special kind of discipline that would turn him into an Olympic sprinter later in life or would I be hamstringing him for the sake of my own pride?  Does that make any sense whatsoever?

This year, I will be entering new waters.  In the four earlier years I’ve had children in school, I’ve never been the mom that had to attend IEP meetings or therapy sessions.  I’ve just been the mom with the smart kid and the cute kindergartener.  Now I’m the mom that decided not to take that great job so I could be the mom that goes to school and helps with the hard days.  I’m the mom that packs the special bag and does the extra work to make sure things go smoothly.  I’m the mom that makes sure the label doesn’t mean he gets stuck in the seat in the corner, but gets all the special help he needs to be the brilliant kid that proves you wrong.  I’m that mom.  And I’m bad ass.

*I feel badly that I didn’t add this earlier, but I also want to make clear that my husband is also that dad.  He supports every decision and makes every hard sacrifice right along side me.  When one of us has lost our focus and determination to give Jordan his best shot, the other is there to remind us why we’re doing this.  He lovingly watches me devour books and articles and try crazy-brained ideas to help ease life around here.  He sacrifices for all of us.  And he is most definitely bad. ass. :)*

a successful day…

Today was a successful day in the land of “impropers.” Well, successful for the most part.  I still have around a half ton of dirty laundry to reason with, but lately, that is of no consequence to me.  I am immune to the piles.  Unless, of course, no one can find underwear.  Then, there’s a problem.  So…I better get on that.

I woke up to two snuggly kiddos on either side of me, giggling as they tried to sneak in and steal some time on a rare morning that daddy was already gone and they woke before mommy.  After a few minutes, we thought we better get moving.  I hopped in the shower and called Jordan to get in right as I was getting out so I could wash him up.  He got in right away and there were no problems in getting ready for school.  He moved quickly and without incident.

Jordan jumped off the bus when he got home and showed me his daily report from his teacher – the third day in a row this week that he got all smiley faces for his focus and behavior during class.  He worked on homework, had a healthy snack, and then went outside to play with friends.  It’s dinner time and he just kindly asked for ten more minutes of play before he has to come in.  So I said yes.  Because he asked nicely and without a fit.

Why are some days so easy and without incident where others are ridiculously like all of us are trudging through quick sand to get the basics done, and even that is asking too much.  I swear there is not one thing that I do differently.  I know there is supposedly nothing but the “pistons in the brain firing differently” from day to day, but that just doesn’t do it for me.  I need a miracle formula that makes for days like this every day.  Do they sell those on eBay?

Please don’t get me wrong, I’m not complaining.   I love days/weeks that things are so darn easy.  I just wish I knew how to replicate them.

a mother’s work…

I read a quote recently that I assume is about three quotes rolled into one as only a sleep deprived, scatter-brained and desperate mommy is capable of.  It went something like, “a mother’s work is never done; from sun up to sun down, and more if you have a son.”  I would like to lend a hearty amen to that.  Actually, I may have actually made that up.  I can’t even remember anymore, because let’s face it, my brain is like oatmeal 75% of the time these days.  In addition to the usual mommy and wifey tasks I have on my plate, I have a new obsession.  It’s called “name that disorder.”

I say “disorder” very lightly at this point because I really don’t think I like that word for our situation.  At least, I’m not ready to say it yet.  Have you ever been in a position with your kids (or dogs or significant others for that matter) where you know something is up, something big that is going to require a major change in the way you do things, but aren’t ready to really say it out loud?  It’s probably safe to say that’s where I am today.

We recently had school conferences for our little man who is nearing the end of Kindergarten.  This is a conference I have not been looking forward to.  I knew what was going to happen.  I knew the words “not ready to move forward” were going to be said.  I knew the school’s learning counselor was going to be there.  I knew because I invited her.  I invited her because I knew we were at a point where I needed help.

Let me tell you some things about the little man.  He is six and the size of an eight or nine year old.  Seriously.  He is the most sensitive, loving and kind-hearted little guy you’d have the privilege of knowing, even if you weren’t his mother.

He has also been referred to as the following things: “destructo boy,” “mr. destructicon,” “aaaalllll BOY,” “three boys in one,” “just a typical little boy with lots of energy. LOTS of energy,” “rambunctious,” and oh so many more.  Are you catching my drift here?

He’s also known as a tender-hearted sweetheart,”  “Mommy’s little boy” (aka: Keli totally babies that kid and coddles him) and “the baby” of our family.

For all intents and purposes, Jordan is “normal.”  He really is a rambunctious little guy that is all boy full of energy.  He’s a boy that likes to run and jump and climb and play.  He’s a little boy that likes to be good at stuff.  He likes to be praised and be told he’s doing well.  He likes rewards and stickers and routine.  He is also a little boy that learned to throw himself out of his crib before he could even crawl all that well and one that we had to lock in his completely bare room at night in order to keep him safe because of what an expert “house explorer” he was.  Trust me, once you find your toddler sitting on top of the stove attempting to turn on the burners, locking him in a completely empty (except for a bed) and child-proofed room at night no longer seems like child abuse and just seems damn smart.

Before this year, we tried Preschool twice with Jordan.  Both attempts were very unsuccessful.  Both attempts ended with us removing him from the class and saying we’d “try again next year.”  We also had him in a formal daycare situation for a year and a half.  You’ve probably heard me refer to this as the time from hell, and the reason I became a home daycare provider.  All this time, I secretly wondered if there was just a little more going on with Jordan than met the eye.  I always waited for someone to tell me that he had some sort of a “disorder.” Each doctor visit I waited for someone to say “autism” or “aspergers” or something.  Each time no one did, I was relieved, but left with lingering wonderment.

Beginning Kindergarten this year, I knew at some point there would be a “conversation.”  You know what I’m talking about.  That moment when the teacher or counselor comes to you and says the combination of some dreaded letter formation that means my kid is labeled for the rest of his life.  I was on guard.  I was scared.  I was hopeful.  Hopeful that it would be the beginning of some sort of answers to questions I haven’t dared to even utter out loud.   Questions I knew I would be judged for asking and questions I didn’t want to be thinking.  Questions like, “what if Jordan isn’t just ‘all boy’ and has something special going on inside of him?”

Part of me feels like a coward for not asking those questions out loud much sooner.  And part of me knows I’m a coward for not wanting to face the opposition that I feared would come from some people around us, saying once again that “Keli is a dramatic, over-reacting attention-seeker.”   Could Jordan be having a far more successful Kindergarten year if I’d asked someone if there was something special going on and would they have even listened?  I know I’ll never know the answer to that.  And it’s stupid to even ask it, since it really doesn’t matter at all.

The point is, I am asking questions now.  I have started down the road of finding out if there’s something I can do to help my little man learn how to read, learn how to sit still when it’s carpet time and he doesn’t like sitting there in that completely unstructured circle listening to sounds that have nothing to do with story time, and learn that no matter what, he’s smart- probably even too smart.  We are letting someone that knows far more than we do take a look at the way he thinks and learns and reacts and responds to see if there’s something more there than “a typical little boy that needs more discipline and less coddling.”  There may be, and there may not be.  I’m completely open to whatever it is we find out.  I know no matter what, we will all benefit from this experience, we already are.

But, the more I read about a little something called Sensory Processing Disorder, the more I know, deep in my gut, that I have finally stumbled onto something that may make my baby’s life so much less frustrating and so much more “right.”   My mother-in-law always tells me that God gives us the kids we need in order to make us the kind of people he wants us to be.  Never more than in this time has that statement been so true for me.  I love my kids more than anything in this world, and I will do all I can to be the mom they need.  I’m not perfect, but I think that’s what makes me such a good mom.

I know I’ll be processing my way through this experience on my blog.  I know it’s not what many of you expect when you log on, and I’m sorry if this is just not for you.  But, as always, this is where I get my crazy out.  And right now, my crazy pretty much revolves around this.  I hope you’ll stick through it with me.  Or not.  I can appreciate that too.  I also want to apologize for my absolutely non politically-correct or proper verbiage when I talk about these things.  I know calling a kid “normal” is frowned upon. I know there are better words to use than “special” or whatever.  I don’t care.  This, for now, is me exploring a world that is foreign.  I don’t mean to offend or be off-putting to anyone.   I just need to get the crazy out.