Tired

All kids have bad days.  All people have bad days.  But when Alex has a bad day, it goes beyond what most people would probably imagine, because he tends to save these episodes for me.  It’s always fun, though, when Alex chooses to display his tantrums in public, and even more fun when it occurs in front of people we know (like this evening, when he threw himself on the floor, screaming, in front of not one, but all three pastors at our church).

And today, of all days, I chose to work on my arms at the gym.  So there I was, already sore, and trying to convince my stubborn kiddo (who is very strong, I might add) to put on his coat and his shoes so we could go home.  Easy request, right?  I wasn’t asking him to do anything difficult.  But wow, did that set him off.  I still don’t know exactly why he got so upset.  He is probably very tired, having not slept well last night, and he didn’t eat much dinner so he could have been hungry.  It was also the first night of a new Wednesday evening schedule, so that could have also played into the situation.

It’s like having an inconsolable infant; you know something is wrong, and you can narrow it down to a few things that may be causing the tantrum, and then all you can do is try to go down the list to find a solution. Only in this case, it’s much more frustrating because he is capable of telling me what he wants or needs, but for some unknown reason, this time he doesn’t.  He is very verbal; he makes demands all the time.  He sings songs and tells jokes, and has a terrific imagination.  He has the ability to “use his words” (I can’t tell you how many times a day I use that phrase), but in this scenario, he just doesn’t. Instead, he cries and screams, and I’m left to determine why.

To add insult to injury, when I share these situations with those who are supposed to be helping us, I get the ever-predictable response of placing the blame on his Down syndrome.  I’m not buying it anymore.  Yes, his Down syndrome makes communication more difficult for him, but why does he have that hairline trigger that sets him off the way it does?  Why, after throwing a 20 minute tantrum, can he revert back to his cheerful, funny disposition, like nothing ever happened?  Something else is going on; his Down syndrome might contribute to it, but there is something else.

Now, to just figure out what that is, and how to handle it.  Exhausting.

Gym

Today, after a long break (too long!), I made it back to the gym.  It felt good…at the time.  Now, I’m extra tired and a little sore, but after maybe a month off (no child care + extra long holiday break = no free time for Mom, not even for exercise), I shouldn’t expect less.  I know it will take me a while to build back up to where I was in early December, but as long as I keep going, then I’m making progress.  Baby steps.

Meetings

I’m not a big fan of meetings.  Meetings typically aren’t called to discuss something fun; if that was the case, it would be called a “party” or “celebration”.  On the contrary, “meetings” are usually very serious times to discuss an important matter.  And I don’t enjoy them, not one bit.

Since Alex started school, we have sat through endless meetings.  We have also sat through meetings to learn how to handle other meetings.  It’s exhausting.  Some meetings are stressful, others are aggravating, and still others leave me in a state of pure shock and/or confusion that it takes me hours (if not days) to sort it all out and revise the game plan.

Any parent of a child on an IEP knows that you don’t just get to send your kid to school.  Nope.  Oh, but wouldn’t that just be lovely?  To send your child off, happy and smiling, and know with some certainty that everything they need is being taken care of, without having to look over every shoulder and constantly be viewed as “that parent”?  These are the things I dream of, usually when I should be prepping for another meeting.

I know, I know, there are certainly difficulties for other parents, for other reasons, even if your child isn’t on an IEP.  Perhaps, it is these parents that can most closely empathize with the trials and tribulations of the IEP parents.  Most have no idea what we encounter, in our efforts for inclusion; it’s always interesting to see the reactions of those who finally get an inkling of our experience.

I’m quite certain that it’s no picnic to be on the other side of the meeting table, either.  Here’s the thing, though: it’s nothing personal.  I don’t care who is sitting across from me; I’m still going to advocate for my son.  The problem that most of us probably face is that our advocacy efforts are taken as attacks on individuals.  Then, it becomes all too easy for tempers to flare, for feelings to get hurt.  But, listen: it’s usually not the teachers causing the parents’ frustrations.  It’s a broken system, rooted in money issues (although nobody can come right out and say that) and the fact that our kiddos don’t contribute to the districts’ performance ratings because in most cases, they aren’t taking standardized tests.  Those two elements make it very difficult to change the system in our kids’ favor.  As long as the districts are meeting the minimum requirements, it is nearly impossible for the pleas of the parents to fall on cooperative ears.  It’s been suggested to me more than once (by family, and quite frankly, myself!) that we should just move to another district.  But then, though, we’ll have a whole new catalog of problems.  It’s that pesky “grass is always greener” lesson that I’m not interested in learning again.

I’m absolutely not picking on the school district which my children attend, as I know that parents across the country, with kiddos of varying diagnoses, are having the exact same struggles that my family is having (in fact, some have much more daunting battles!).  Our district is excellent and my other two children will benefit greatly from attending such wonderful schools.  Of course, Alex has also benefited, in different ways; but, I am confident that he could benefit even more if we could all get on the same page.

Until that time comes, though, I will sit through as many meetings as it takes, and I will encourage other parents to do the same for their children.  The “minimum” just isn’t good enough for any kid, but that is all they will get without strong advocacy efforts from parents.  Fight hard, fight loud.

And if I have to be “that parent”, so be it.

Church

Sundays are lovely.  Mark typically does not work on Sundays (the only day he doesn’t work!), and it’s usually a nice, relaxing, family day.  Most of our family begins our day at church.  I say “most” because, well, not everybody goes every week.  Being an interfaith couple (Mark is Jewish) and having a child with special needs, it’s actually a bit rare to see all five of us at church.  My daughter and I are the most regular attendees, but each of us benefits from being a part of the church, regardless of our attendance.

I grew up going to church, here and there, with my aunt; I loved it!  Sunday School was so fun, and I loved going to Vacation Bible School.  As I got older, and we moved away, it was more difficult to visit that church, and eventually we didn’t go at all.  As I continued to grow up, I slowly realized that I didn’t agree with certain beliefs held by some churches, and that made it difficult to find the “right” church.  It’s never made sense to me to exclude anyone from being treated as an equal part of society.  I don’t care who you are, what you look like, whom you love, what you believe…to me, we’re all the same, and should be treated as such.  It shouldn’t even be an issue, but sadly, it is.  Because I feel so strongly about this, I felt like I was being disrespectful when I did attend a church service, and eventually I just stopped looking.

Then, when Alex was born, I found myself thrown into the world of advocacy; facing new battles to make sure that someone (my Al) would be given the same rights and opportunities, even though he is different than others.  Beyond that, I found myself asking the same question whenever we thought about going somewhere new or trying something different: would we be treated differently because of his Down syndrome?  I’d heard stories that indicate that people with disabilities aren’t accepted as equal participants in society, even in places like church, where everyone should be welcome.

But, I’d already learned that not everybody was welcome at church; at least, not at every church.  So I didn’t even try to find a place where we might feel welcome on Sundays.  Then, one day I was scrolling through Facebook, and suddenly I felt like a church kind of found me.  A friend (who is even more passionate about equal rights for all) posted adorable pictures of her kids, at church, on Easter.  Those pictures struck me; I immediately thought that if my friend was attending a church, then this church was different.  Special.  Inclusive.  Exactly what I wanted for my family.

After several questions to my friend, many visits to the church website, and months of debating (my husband is Jewish, remember, and we had been coping with the “religion and kids issue” by just not dealing with it), I finally attended church on a dreary March Sunday.  I took Addie with me to check it out, and I was immediately welcomed, given a tour, and then someone invited me to sit with her and her friends.  Addie enjoyed the children’s program; we both left that day with a warm, fuzzy feeling about our experience.  We went back the next week.  I took Andrew with me the next time, and finally, took Alex.

I have always been impressed with the church: the music, the messages, the building itself.  But, it’s the children’s programs that really blow me away.  My kids (all three of them!) perform with the children’s choir and participate in the pageants and VBS.  They each attend a children’s worship service; Alex is able to spend his time in a sensory-sensitive program, which is fantastic.  Usually, especially in a new setting, I am apprehensive about leaving Alex.  Would his Down syndrome throw them for a loop?  How will they understand him?  Will he be frustrated and act out?  But, I have never felt uncertain about leaving Alex so that I could attend service; no matter what he is doing (choir, children’s service, pageant rehearsal), he is treated the exact same way as the other kids.  They adapt the programs for him, instead of expecting us to adapt to the program.  It’s wonderful.  He feels safe and loved, and because of that, he loves going…and everyone he sees while we’re there.  And because the kids are so well taken care of, I can relax and enjoy the peacefulness that surrounds the services.  I need that, and I am very grateful for it.  On the rare weeks that I miss church, I notice myself feeling “off” throughout the week, which I attribute to missing out on my hour of quiet reflection on Sunday morning.

All of us really enjoy attending service; even Mark finds the church to be very welcoming.  He joined a small group with me and we’ve developed some great friendships that we otherwise may not have discovered. More importantly, we get a weekly reminder that we are all beloved children of God, no matter what our differences may be. Everyone is the same, and we should love, respect, and celebrate one another. That is exactly the lesson I want my children to grow up learning.

On the Sundays which all five of us attend church, we go out to lunch afterward (with my children, eating out is truly an event!), then it’s on to whatever else we need to accomplish before the weekend is over.

In our chaotic (not to mention exhausting, unruly, and very, very loud…) life, this is truly is a great way to start off each week.

Cookies

Today is the day many people seem to wait for all year: the first day of Girl Scout Cookie sales.

My little Girl Scout (she is actually a Brownie this year) is kicking off her third year of this iconic event. Because it’s always so cold, last year I allowed her to utilize my Facebook page to sell her cookies. I would set her up, she would tap out a status update, and take orders from those who responded.  It was great. She got lots of orders, and we both stayed a lot warmer than we would have been if we pounded the pavement. Weather permitting, we’ll stop by some of the houses on our street, and she plans to ask around a bit at church and at her school, but if she can reach her goal solely by utilizing social media, then so be it!

Addie has a pretty ambitious goal this year; she is hoping to sell 500 boxes.  She’s a smart girl, this one.  The prize she wants to earn comes after selling 204 boxes, but she set her goal a little bit higher than that because she has sold more than that in the past sales.  The big prizes (a laptop or an iPad, your choice) are earned after selling a mere 3000 boxes.  Of course, she really wants her own iPad (and everything you get leading up to that prize), but even she knows that isn’t realistic.  She’ll try her best, though, and as long as she is enjoying herself, I will support her.

We all know, of course, that it’s the parents really driving these sales.  The girls can’t drive, and they are hopefully not going out unaccompanied to sell cookies in their neighborhoods; they simply would not be as successful if they did not have the assistance.  Other than my husband taking an order form to work, we expect Addie to do all the selling on her own.  She may use my Facebook page, but she types all the updates and then helps tally all the orders.  When the cookies arrive at the end of February, she will help sort everything and hand off the orders.  It’s her sale, and even though she needs assistance, she needs to learn the lessons at hand (using manners, speaking clearly to adults, collecting money, tracking her sales progress…). For me, the twinkle in her eyes when she talks about the prizes she can earn is more than enough prize for all the work I’ll put into this sale.

That, and the half dozen boxes of Thin Mints I’ll consume this spring.

Kerplunk

Friday nights are typically pretty low key for our family.  Alex has dance class, and the other two kiddos usually stay home with Mark while I take Al to class.  After that, we have an easy dinner, then everyone is off to bed (parents are exhausted by 9pm on Fridays!).  I was looking forward to another one of these pleasantly predictable evenings, but the universe seemingly had different plans.

I received a phone call from Mark; I expected him to tell me that he got delayed in a meeting at work, and wouldn’t make it home in time to stay with the kids…meaning that I would have to drag everyone out and listen to Addie and Andrew whine and fight all through the hour we’d spend at the dance studio.  Not fun.  I was rather annoyed at the mere thought of it; it’s been a long, wonky week (two snow days and one delayed start, remember!) and I needed a break from cranky kids.

I answered Mark’s call, preparing to hear the news of a late arrival, and not expecting to hear “My car is dead.  On the freeway.  Not sure where.” Suuuuuuper.  I take it back; the “I’m running late” speech would be way better than this announcement.  I began to panic a bit.  If he didn’t know exactly where on the freeway he was stopped, then how would I ever find him?  The kids were going to freak, especially Alex, who really looks forward to his dance class every week.  Mark proceeded to explain that he was just letting me know not to wait for him, that he would have the car towed.

I should mention that this car is 14 years old, has been completely rebuilt (engine and such) at least once, has gone through endless repairs, and has been on its last legs for the last couple of years.  This was inevitable.  It broke down last week (on my birthday, fun!), but we were able to jump it and get it going again.  It (surprisingly) survived the Polar Vortex. Alas, it seems as though that was its last hurrah, as it now sits sadly in the driveway.

And we are left to figure out how to replace it (and yes, take the kiddos along when we go car shopping tomorrow).  The prospect of getting a new car should be exciting, not headache inducing; but, when only one parent works, any major purchase can bring about physical reactions.  I know that we’ll figure it out, as we always manage to find a solution, but until it’s settled, I’ll just be over here, stressing out about something new.

I should just be thankful that Mark made it home in one piece.  Once we were all home and getting ready for dinner, Mark told me how he was just driving along, in the middle left lane, when all the sudden the gas pedal gave out and the car made a terrible noise.  That was it: weird noise, then no power.  He was coasting along on the freeway, during rush hour, yet somehow managed to make it over to the far left to come to a stop on the shoulder.  He contacted me, then AAA, then the police…as the power went out completely and he had no hazard lights.  Cars were whizzing past him, as he sat helplessly in the broken down car; scary!  The police came along to light some flares, then left him again.  Of course, his phone died, but the tow truck finally arrived and brought Mark and the car home.  Hopefully someone else can come get it sooner rather than later, as it was dumped right in the center of the driveway (I may have driven through the grass a bit to get my van into the garage when we got home…but that’s the least of my worries right now).

So tomorrow, as you’re enjoying your leisurely Saturday afternoon activities, think of me.  I’ll be stuck at a car dealership, half listening to Mark negotiate a price on a new car while the kids tear the joint apart and I rip all my hair out.  Good times.

Twirl

I’m convinced that my little ballerina twirls more than she walks.  Addie twirls and spins, spins and twirls, all about the house…and the grocery store, and through the mall, and probably even at school, given the opportunity.  I wish I could see what she sees in her mind as she dances; is she on a big stage in front of lots of people, or in an empty studio?  Is she wearing a big, fluffy tutu, or her standard leotard and tights? I should ask her to write it out for me (as she is quite the writer, too!).

When asked that million dollar question, “What do you want to be when you grow up?”, she often says that she wants to be a ballet teacher.  She has a true love of the arts, and she is so fortunate to have a fantastic art program at her school, and she started her fifth year of dance studies this fall.  Five years!  She was just three years old when she started dance classes, and she has loved every minute of it.  Last year, she began talking about auditioning for her dance studio’s company…at just six years old.  She still as a couple years of learning and dancing to do before she can audition, and she knows this, but I love that she has a vision of being part of that program.

Last month, my mom took us to see a performance of The Nutcracker.  As always, BalletMet Columbus put on a beautiful show, and although it wasn’t Addie’s first trip to the iconic holiday production, she was instantly captivated and swept into the magic and beauty of the show. The best part, for me, was watching Addie as the dancer portraying the Sugar Plum Fairy stepped forward for her curtain call; she almost came out of her seat, applauding so hard, and her eyes were huge and sparkly.  Maybe she imagined herself on that stage someday?

I can see that her ballet studies are also building Addie’s confidence.  One of my proudest moments as a “dance mom” (although it is one of my life missions to NEVER be a true “dance mom”…you know, one of those pushy stage moms…it’s just not my thing) was watching Addie leave the dance studio a couple of months ago, then stop short and turn to go back in to talk to a classmate.  The other girl didn’t look familiar, but I figured that they either went to school together, or had formed a new friendship after just a few weeks of class.  When I asked Ad about it, she simply replied “She’s new to our class.  I wanted to let her know that she did a good job today so she would feel welcome.”

It’s funny how our kids can teach us things without meaning to, isn’t it?

My hope for Addie is that she can continue to dance, and enjoy her classes, for as long as it remains meaningful to her.  She has already abandoned other activities (like soccer), in favor of ballet, as she knows that she doesn’t have room in her schedule for everything.  I will continue to encourage her, enjoy watching her practice and perform, and wonder how she envisions herself as she twirls through the living room.

My guess?  On stage, in front of a large audience, wearing a sparkly purple tutu.

Lessons

With three kids in the house, I am constantly throwing out phrases like “Read a book!”, “Snacks should be fruits or veggies, not junk!”, and “Pick that up!  Don’t just walk over it!”.  Most of the time, these suggestions get drowned out by all the noise in the house, and even if the kids do hear me, they just big fat ignore me. Those things aren’t fun; the alternatives are much more appealing.

Between a long holiday break and extra cold weather, we spent a lot of time at home; with our busy schedules, this is unusual.  It was nice to not be rushing around on our crazy paths, but I allowed us all to get a little lazy.  I told myself we were relaxing.  Now I’m paying for it.

Our kids don’t have the latest, snazziest electronics; partly because we don’t want to pay for it, and partly because they are all under ten years old and just don’t need it.  However, we do have some gadgets, and they are easily sucked into them.  This is where the “Read a book!” suggestion came into play.  Actually, it was more like “Read. A. BOOK!!”, especially after they started fighting over whose turn it was to play on whatever tech-y toy had their attention that day.  That was my solution.  Put away the gadget, get a book, and be quiet.  Easy enough, right?  Only, it never worked out that way.  They may have read for a while, but later they were back at it.  The days were long, so in the end, they enjoyed more screen time than they typically get.

Being stuck in the house also led to mindless munching, so they heard “Snacks should be fruits or veggies, not junk!” quite a bit, as well.  It was Christmastime, though, so there was a LOT of extra candy and other sweets around, and we all indulged a bit too much.  See above about the days being long, as it applies to this as well.

As for “Pick that up!  Don’t just walk over it!”…well, they probably hear that (or some version of it) at least once a day, holiday break or not.  It makes me crazy when a kid walks on top of something (piece of paper, Hot Wheels car, each other…) but does not stop to pick it up.  I don’t care who put it there; if you see it, fix it!  I suppose I’ll be battling that one for many years to come.

Today, as I heard myself spouting off one of these, it struck me: when was the last time I listened to myself and set an example?  It was one of those light bulb moments: why don’t I follow my own advice?

Being a mother of a child with special needs is stressful.  Being a mother, or father, of anybody is stressful.  I have allowed myself to slack off, big time, and just write if off as dealing with stress.  “Sure, I can eat those Hostess cupcakes. Today totally sucked.”, or “I’ll just play five…or 15…more rounds of Candy Crush, because I need to clear my head.”, or, “Hey, I’ll just clean off my desk tomorrow, because I really need to just sit and eat cupcakes and play Candy Crush.”

I’m not saying that nobody should ever do any of these things; I’m not here to tell anyone how to handle stress.  But for me, it’s gone on for a long time, and maybe, just maybe I’ve inadvertently taught the kids that this is appropriate, every day behavior.  Something to think about, at least.

So, how should I be dealing with stress?  Honestly, I don’t know.  I have a gym membership, and enjoy going to the gym, but I have to do it around everyone else’s schedules.  I love to read, but at the end of the day, I’m exhausted and know that if I open a book, I could be up all night (I easily get whisked into a good story and insist on finishing it…).  I know that the diets of everyone in this house need to improve (we need to cut more processed foods out…it’s a tough process!), but it’s so much easier (and cheaper!) to stay in our regular routines (Taco Tuesday, anyone?).

I do know this: if I started listening to myself and doing what I advise of my kids, then maybe they would take notice.  If nothing else, I would be dealing with stress in a much healthier way.  Maybe that’s all the reason I need.

Remembering

(I’m taking a break from enjoying the current heat wave…we’ve gone from -8 degrees to a balmy 6 degrees…to bring you this post…)

This week’s cold snap, or Polar Vortex (will this be one of the top terms of 2014?  Or is it too early to discuss that?), prompted the news outlets to proclaim that we are experiencing the coldest temperatures in twenty years.  Twenty years?  That used to not mean so much to me, as I’m such a young, hip soul (play along and save your comments, ok?), but when I stopped to consider that piece of trivia, I realized that I actually remember the last time we dealt with subzero temperatures.  Not surprising, considering the reason.

I was a sophomore in high school, and it was February.  I recall that because my high school had an annual Sweetheart Dance, where girls had to invite dates (the feminist in me now hopes that this tradition has fallen to the wayside), and my friends and I were very excited for the dance.  I had a date, a cute semi-formal dress, and I had booked my appointments at the local tanning salon.

Now, if you know me, you are probably very surprised to read that last part.  Tanning salon?  Me?!?  The one that can’t be out in the sun, even with SPF 50+, and not get sunburned?  The pasty, freckled, very pale one that can not tan to save her life? Yep.  ‘Tis true.  Tanning beds were all the rage back then; we didn’t have any of this spray tan stuff.  I didn’t go tanning all the time, but every once in a while I could convince myself that if I just tried one more time, I could hold some color.  So, a-tanning I would go.

You can imagine the panic that set in, at least with all the girls, when school was cancelled for several days before the dance because of inclement weather.  It was super cold (thus, the parallel to this week’s weather), but I also remember a lot of snow on the ground.  We were so concerned that the dance would also be cancelled, as most school events typically are when school is closed due to weather issues.  For whatever reason, though, the dance was not cancelled, and I went ahead to my last tanning appointment on the day of the dance.

Everyone has those “stupid teenager” ideas, right?  Well, one of mine was to stay in the tanning bed for extra time that day.  What was I thinking?  I probably thought that I would walk away, nicely browned and looking lovely for the dance.

Wrong.  Way wrong.

That evening, I greeted my date wearing a black, strapless party dress, complete with a bright red sunburn (tanning bed burn?) that was even more painful than it looked.  The burn was in a lovely circle shape on my chest, as well as my back, which made the strapless dress just the perfect frock for the occasion.  Oh, the looks I got at the restaurant during dinner, and I got even more attention for not wearing a coat when it was so cold. That burn made me feel like I was on fire.  Had I fallen on the ice, I could have melted all the snow on the ground.  It was miserable.  In fact, that is the extent of my memories from that dance.  I’m typically pretty good at recalling details, but aside from the big facts (who my date was, the style of the dress, and the burn), I have managed to block it all out; or, perhaps my memories were just singed off my brain by the heat of that burn.

Fortunately, I never got back in a tanning bed again.  Sometimes it takes a severe burn from light bulbs to convince someone that they will never, ever be tan.  Ever.

Did the Polar Vortex prompt you to remember what you were doing twenty years ago?

Brrr…

I learned a new term today: Polar Vortex.  Apparently, it can best be defined as this: a rare force of nature which brings frigid temperatures, school cancellations, and many reasons for parents to beat their heads up against a wall (like we need more of those, right?).

It’s barely 7pm, and I just sent the kids to bed.  I’m done, they are done, we all are frazzled and cranky because we are STILL not back to our “normal” schedule.

In the midst of this crazy cold weather, I do realize that we are fortunate enough to have a warm home, stocked kitchen, and lots of activities to do; for these I am very grateful.  I’ve tried all day to keep that a focus, and to think of all of those who can not be thankful for any of these, in order to keep the negative if-my-kids-don’t-stop-fighting-for-two-seconds-I’m-going-to-run-away-and-join-the-circus thoughts at bay.  Instead of orchestrating grand activities that can be very overwhelming for the kids (“Hey, let’s make instruments and have a parade and then make ice cream out of the little bit of snow we have in the backyard, but only after we blow bubbles out the back door and watch them freeze!”), I just kind of sat back and let them do their own thing.  They made up a play, they practiced math and spelling on the computer, they looked at their books, and built cool Lego cars.

But now, we are over it (see above).  And because school has already been canceled, we get to do it all over again tomorrow.  Joy!

Seriously, though, I will continue to be grateful for our warm shelter and full tummies, and to pray for those who may have trouble finding either, or both, of those things (and not just now, during extreme weather circumstances, but always).  Hopefully, our power will not go out (knock on wood, as I’m seeing reports via Facebook that nearby neighborhoods have been losing power throughout the day), and we can drive each other bananas tomorrow and look forward to the return of school on Wednesday.

I will now return to my blanket cocoon on the couch.