Saturday, March 11, 2017

As World Down Syndrome Day approaches...

Well, we're approaching World Down Syndrome Day and we've got some things going on at Casa de Theodore.  Before I get to the Tera related news let's talk preemie struggles.  Our poor little ZoZo got hit with a nasty virus that just won't let go of her.  And thanks to those damaged little lungs inside that sweet perfect body, it's been a rough seven days.  As a result of a fever and coughing fits that just got worse, I ended up taking her into the ER last Tuesday night.  I suppose as a sign of progress, we actually got sent home and not admitted.  Along with her discharge, she was prescribed a three day course of oral steroids designed to try to prevent her from returning to the ER.  Tom and I typically cringe at the mention of oral steroids as they have, at times, turned our kids into mini rage machines.  But if we wanted to help her get through the virus, it seemed like the best plan.  She actually got through it relatively unscathed, until of course right after the last dose.  The last 24 hours have been a little challenging, but we're hoping the worst is behind us.  Unfortunately, her nights have been uncomfortable for her, full of coughing to near the point of vomiting, and difficult for us to know what she's going through.

As a result of a crazy week at work for Tom and me actually having some sick days still this year, I was home with Zoey for Tuesday, Wednesday, and Thursday.  In that time I got some serious snuggles, some philosophical discussions (from the perspective of a two year old), and a little flashback to my time with her when she finally came home from the hospital.  What these types of times remind me of is, why she's still here.  See, around the age of one Zoey went from being my mild-mannered, go with the flow, easy to please baby, to a dramatic, emotional, feisty, stubborn, tough toddler.  The past year and a half has been challenging as she throws tantrums for little to no reason, she's not thrilled being around new people, she wants what she wants when she wants it and completely on her terms, she is insanely independent, and frequently doesn't handle being told no or what to do, well. And she is very much unlike Tera was at that age (except for the independence).  But in these past few days, I remember those first few days when two different doctors told us that our little 2.5 pound baby fighting for her life was feisty.  It's exactly all these challenging traits that are what kept her with us and despite the frustration that goes along with them, it's what makes her Zoey.  It's what will make her the independent, strong, and successful woman I know she will someday be.  We just have to make it until then...

And now for our big girl.  Over the past six years Tera has seen her cardiologist regularly to check in on the progress of her VSD.  She was born with three holes in her heart.  The biggest, and most concerning, actually closed very quickly.  The ASD closed by the time she was one, and all that remained was the VSD.  For about two years it was just a watch and see what happens.  Then about two years ago he saw that tissue had started forming over the hole, which was not what they wanted.  However, it was only problematic if the tissue formed faster than the hole was closing.

This past Monday she had her yearly checkup.  I had Tom take her, but I had a feeling this one wasn't going to go as well.  And in short, it didn't, for a few reasons.  First, she was not happy about the echo and got very worked up.  Second, were the results. Basically the tissue that has been forming is more of a flap now and it's moving back and forth, which is a new, not so good development.  Also, she has leakage in her aortic valve which is also new and not good.  As of Monday, he was going to confer with his partner, but more than likely plan on a sedated echo in May, and schedule open heart surgery for June or July.

However, after meeting with his partner and reviewing the results, they've decided to wait until next year.  She's not in any danger and it's not affecting her day to day life so they both feel comfortable with waiting.  So as of right now, we'll schedule another echo for a year from now and if the situation is the same or any worse, he will most definitely be doing the surgery.  Since heart problems are such a common occurrence in individuals with DS, it's less likely to resolve, but since it's not a necessity right now, he wants to wait.  We trust his opinion and feel more comfortable knowing he's already sought another opinion.

Needless to say Monday was a rough day, which led to a rough week.  We called our immediate family and friends to let them know and worked through the process of accepting our child was facing open heart surgery.  We had always prepared ourselves for the possibility of surgery, but it's still very difficult to know.  Now that know it's not happening this summer, it's a relief, but at the same time I struggle with having to think about it for another year.

Think what you will about how I view things, but I have to deal with things in my own way.  At this point, it does me no good to think that it might not happen, because then if it does, I will be devastated all over again.  I need to accept that it will happen so that I can think through it.  So if you talk to me about the situation, please don't try to convince me that she still might not need this very serious surgery.  Pessimistic view or not, this is how I  deal, and I've dealt with a lot.

So as World Down Syndrome Day approaches (on March 21st) please consider helping us spread awareness and love.  Share a fact (if you need help, I know plenty), share a story, share a feeling, share an experience, share a change you've gone through since knowing someone with DS, share a picture, or share something that you'd like to know.   But please, celebrate this day with us and our family.  Wear your Team Tera apparel with pride and know that with all your love and support, we'll get through this and anything else.

Friday, February 24, 2017

On our Sixth Anniversary

So many things to think about right now.  First and foremost, Tera’s sixth birthday is on Sunday.  That means so many things to me.  It’s the sixth anniversary of us being parents, the sixth anniversary of our lives changing forever, the sixth anniversary of the news that rocked our lives, and most importantly, the sixth anniversary of one of the most defining events of my life.

Every year so far, Tom and I have decided what to do for Tera’s birthday party. But this year, she made all the big decisions.  She wanted a Batgirl birthday party, a chocolate Batgirl birthday cake (not cupcakes), and she wanted it to be purple and black.  This is just one of the ways that she is showing us how much she has grown in the past year.  She has made amazing growth in kindergarten, is working on many of her behavior issues, and continues to demonstrate capability in her ever increasing independence.  

But despite all the gains, there are still areas that she struggles in.  In the past year we’ve had to admit defeat (in a manner of speaking) when it comes to certain gatherings.  Events with lots of kids (like birthday parties) have proven to be very difficult for her so we’ve had to make the tough call and decline some of them; even in the cases of close friends and family.  She still has meltdowns, but they are less frequent.  And the biggest challenge, for anyone and everyone that works with her, is her ever changing and incredibly difficult to identify sensory needs.  We all know she has them, we all know SOME of her triggers, but no one can quite get a handle on what works best and when.  

Tonight was a perfect example.  Tera’s cousins and grandparents came for dinner and a visit.  It being the end of a school day (and one in which she woke up at 4:45am) meant it wasn’t the most seamless visit, but overall they did fine. However, when it was past her bedtime and everyone had to go, it was all too much and she had a meltdown.  And so as everyone left and I physically restrained Tera as she kicked, screamed, cried, flailed, threw her head back, and generally melted down, we were reminded once again of her struggles.

I finally got her upstairs, changed, and into bed where I just stroked her cheek, brushed her hair from her face, and let her snuggle my arm.  But as I laid there waiting for her to fall asleep, I watched that perfect face, knowing what she had just experienced, with my hand on her swooshing heart and I remembered.  I remembered the first time she was placed in my arms and I showed her to Tom amazed at what we had created.  I remembered the short lived euphoria as an hour later we were delivered the news of her diagnosis.  I felt the swooshing of her heart and remembered once again that yearly cardiologist appointments are still a part of our lives as we wait to learn whether or not she’ll require surgery to close the remaining hole.  I remembered so much of that first day, the anniversary of which we celebrate on Sunday.  And as incredibly lucky as I feel that that heart surgery is a still a possibility not a probability and that it hasn’t been necessary yet, I still think to myself, “why her?” “why us?” And the answer is, because.  

Everyone who knows us know we don’t believe in the “everything happens for a reason”, “it’ll get better”, “you’re only given what you can handle”, and any other platitude that  people use when they want to feel better or make someone else feel better.  If it works for you, great.  In our case, feel free to say, “that’s rough,but my goodness are they beautiful and amazing”.  I’ll tend to agree with you more on that.  

I’m not sure if I’ll get another post in on Sunday, but for tonight I’ll say this.  We’re damn lucky to have these two amazing, beautiful, smart, sassy, feisty, inspiring, funny, strong girls of ours.  They are challenging, exhausting, loving, and worth every second stress that comes along with parenting and loving them.  They have taught me about patience, priorities, life, and love and for that I will forever be grateful to all the trials and tribulations that came after 2/26/11 and 7/14/14.  Happy birthday to my sweet snuggle bug, mommy loves you more than will ever know.  

Wednesday, January 11, 2017

The effect of Tera...

I’ve been trying to get back to this.  I need to get back to this to help me work through so many of the things that go through my head.  I’ve had so many times when I thought, “I need to just sit down and get this out, this would be a great post…” and then I don’t.  I don’t make the time.  But last night I experienced something that I didn’t want to just share as a Facebook post (which is my alternate go-to for sharing good/bad things).  I want to give this the attention that I think it deserves.

Last night we had the opportunity to go to Tera’s PE Night at her school.  It was a 25 minute long session where the kids were able to show their families what they’ve been doing in PE this year.  We didn’t know for sure it was going to work out because Tera already had swim and my car was finally ready so if we were going to do it, it was going to be a packed night.  But I’m so glad we did it.  

When we walked in the building, one of the first adults we encountered was a maintenance woman from the school who immediately greeted Tera by name.  Tera then of course introduced her to Zoey (usually the first words out of her mouth).  The woman commented on how nice it was that she was here for PE night and seemed genuinely happy to see her.  Immediately after Tera was greeted by yet another adult who knew her (she seemed to be another PE teacher).  She told Tera to show us her locker and that she and Zoey could hang their coats in there and then head to the gym.  There was at least one more adult that we met along the way who of course, greeted Tera.  I’m really starting to wonder if there’s an adult in that building that doesn’t know her.  A few weeks ago one of the secretaries recognized her at swim and told me that of course she knows Tera, Tera brings the mail down to the office every day...

Tera showed us down to the gym and the PE teachers introduced themselves and said that the kids should go to their stations and show us what they do there.  We would then rotate stations so that everyone would see all of them.  Two of the three teachers greeted Tera and gave her her instructions.  As we moved through the stations I was able to talk to the two teachers.  Individually, they both commented on how much they love having Tera in class.  They told me how much she loves going to PE (even so much as to say she goes potty super fast just so she can get back to the activity), she loves participating, and that “she is a bright spot” in their day.  They commented on how athletic she is and multiple times said how much of a joy she is to see everyday.  

I cannot even begin to express how much that meant to me.  Trust me when I say I know how much that sweet face can light up a room and also your day.  Her smile can melt your heart and her hugs can change your whole mindset.  And I think these teachers have experienced all of that.  

Then, during one of the rotations Tera’s principal came up to give her a high-five.  Tera responded with, “Hi K!” He then told me that he and Tera have a great time every day and that when she sees him, she always yells, “Hi K!” (his last name is a little tough for kids and one of the funniest parts of Tera’s speech is that she typically forgoes the “Mr” and “Mrs” part of her elders’ names).  Once again, there was another adult in the building who has developed a relationship with her and seems to truly enjoy seeing her (though I’m sure he was a little doubtful when he had to call me during the first week of school to discuss an incident on the bus).  

During one of the rotations her teacher let her use the microphone to announce the next shift and explained that Tera really likes using the microphone to help (shocking).  But as the event came to a close, as happens frequently with Tera, the transition of having to leave was upsetting.  She was also tired.  Tom and I both tried various things to get her going but she was on the verge of a meltdown.  Tom took over while I brought Zoey back to our coats and as she got closer she still struggled.  The one teacher that had greeted us at the door tried to help with the promise of a water bottle, which almost worked, but the she lost it again.  Finally her teachers came back in to clean up and they offered to let her use the microphone one last time to say goodbye.  They didn’t react to her crying or screaming, they simply made the offer and fortunately it was enough to bring her out of it.  She screamed “BYE!” into it, and we headed out.  

While the event only lasted 25 minutes, it left me feeling incredibly proud of Tera and incredibly happy to know that these are the people she gets to spend her day with.  She is in an ideal set up that really seems to be working for her.  She’s in a special education classroom with only four other students.  However, she gets to do circle time, library, PE, lunch, and recess with all the other kindergartners.  She gets the attention she needs in her small class, and the experiences she needs, and the other kids need, in the other areas.  And I can pretty safely say, she has already left her mark on the adults that get to work with her.  I know she can be a handful to work with, but the rewards that come from working with her are immense.  

Thursday, July 14, 2016

To you my sweet Zoey, on your birthday...

The scar from my c-section has mostly faded (thanks to the skilled hands of a phenomenal surgeon), but the memories from that day and all the days and weeks before and after that day are forever imprinted in my mind.  It was still eight weeks before my scheduled c-section and twelve weeks before my due date with you, but life had other plans.  I had a warning the week before that things go could wrong, but we had still hoped for more time.  When people talk about how you “chose” to enter the world early, I quickly correct them for it wasn’t you that was to blame; you were thrust into this world much sooner than you were supposed to be.  My body simply didn’t want to cooperate this time around, but I’m glad I could protect you for those first 28 weeks.

In the weeks leading up to July 14th these past two years, I’ve spent a lot of time thinking about what I didn’t know two years ago.  That on Father’s Day of 2014 when Daddy took some great pictures of Tera and me with her hand on my belly and you inside, that it would be weeks, not months before you would join us.  That on the 4th of July of 2014 I would comment on how much longer I still had to go when it fact I would go into the hospital that very weekend due to the first sign that there was a problem.  That I would host a Pampered Chef party on July 11th and seem tired to everyone, but once again comment that I still had a while.  That during your cousins’ first birthday party people would once more comment on how tired and “off” I looked, but I still didn’t know.  That the morning of July 14th I would drive your aunt to the airport to see her off and get so upset that Tera had fallen asleep in the car on the way home, but not know why I was so upset.  That your YiaYia would be called by Daddy to come over and help me with your sister because I was so tired and worked up and I still didn’t know.   And then late that afternoon something went wrong.  

While Daddy and I sat at the hospital, with nurses and doctors checking on me often, I was informed that you might have to arrive earlier than expected, but it still didn’t seem real.  And then came one of the scariest moments of my life.  All of a sudden it was very urgent that you be delivered, for both your safety and mine.  And so amidst a flurry of chaos and urgency, I was put under and the next thing I knew they were wheeling me up to see you.  Daddy told me that you were stable, two and a half pounds, and doing ok, but when I saw you with all those wires it still didn’t seem real.  The next morning when I woke up and called Nani it still wasn’t real.  When they had to tell us twice that your lung had collapsed and had to put in the chest tube, it still didn’t seem real.  And when nine days had passed before I could hold you it still didn’t seem real.  And when nine weeks had passed before you could join us at home, it still didn’t seem real; not until you were home and in your own bed surrounded by your family.  

And these days I’m reminded daily when I dress you and see the scars from those chest tubes, that it was real.  When we hear a cough and prepare for a potential hospital visit because of your damaged lungs, I know what you went through was real.  And yet, for every new milestone you hit, for every new thing that you can do, I’m reminded that you are simply incredible despite what you’ve had to go through.  When I see you run, walk up the stairs, go down a slide, or say “Momma”, “Daddy” and “Tera” I know how lucky we are that you can do those things.  And today is your birthday.  Simultaneously one of the worst and best days of my life.  The fear I felt that day is unlike almost anything else I’ve ever experienced, and at the same time, it’s the day you completed our family.  You made Tera a big sister; a job she has embraced wholeheartedly.  You brought strength to our family.  You reminded me that no matter what else I accomplish in life, bringing you two in the world has been my finest accomplishment.  

When you were two days old and the neonatologist came into our hospital room at 5:30am to tell us that your left lung had collapsed for the second time, he told us that you were quite the feisty girl.  I had no idea how he could know that about a baby hooked up to machines that breathed for her, had just required a second chest tube, and was only two and a half pounds, but boy was he right.  You are determined, feisty, dramatic, independent, smart, silly, and beyond beautiful.  Looking at those early pictures is still difficult, but I know that you are so strong and so capable of so much.

I imagine that this day will continue to be a difficult one for me for years to come.  I don’t mean to be dramatic, but the emotional trauma I suffered that day is real for me and I need time still to process that.  As you get older you will probably see me cry on your birthday, but know that it’s not from sadness anymore, but for a gratefulness that you are here to see me do it.  That you are here at all.  I put a book on your birthday wish list called You’re Here for a Reason and tonight, your aunt and uncle bought it for you.  And so as part of our nightly bedtime routine, I read to you, but tonight it was You’re Here for a Reason.  If I wasn’t emotional enough before reading that to you, I sure was afterwards.  But its words couldn’t ring truer.  You are a miracle my sweet love, Happy Birthday.  

Wednesday, June 8, 2016

Why hasn't anything worked yet???

I'm supposed to be working on a class I'm taking, but I can't stay focused.  My mind keeps wandering to sensory issues, strategies, and in general, what the hell is wrong with my kid? I don't want to sound like a broken record, but this is a big deal in our house right now.  I just wish I knew what "this" really is.

In my last post I wrote about Tera's sensory struggles.  Well as much as I'd love to say all the little things we tried have a made a difference, I can't.  She's had some days that are a little better than others, but as of tomorrow, she'll have had two straight weeks of very challenging days.  Currently challenging is defined as: hitting, pushing, defiance, outbursts, screaming, meltdowns, and stress.  I've spent more hours than I care to admit reading, watching, and pinning ideas about how to help her.  But what concerns me almost more than anything else is, what if it's not sensory? I mean, her behavioral therapist, OT, and teachers all seem to think so, and so do I, but if the techniques aren't working, what is going on?

In a perfect world, I would have what's referred to as a sensory diet laid out for Tera.  Unlike other diets, a sensory diet is not food related, but activity related and is really more of a sensory routine to help keep her regulated.  In a perfect world I would do this routine regularly and we would see the happy, helpful, sweet, energetic but not destructive, girl we know she can be.  But it's not a perfect world.  There are a lot of factors to keep in mind along with knowing what will make her situation better or worse and I still have Zoey to think about.  Will keeping her home for a week to work on this benefit her or will it make her return to daycare more difficult because we broke her routine? What's practical for her daycare teachers to do with her? Do we keep her out of activities until she's more regulated?

This last one is particularly difficult for me.  See, part of what is prompting this post is that yesterday, after a day at daycare that really hadn't been any better than the those of last week, she had what I would consider her worst swim lesson ever.  She only made it 15 out of the 30 minutes (which has never happened before) because she kept getting out of the pool, looking for and throwing anything she could find in the pool, repeatedly jumping to her instructors (when it wasn't time to do that), splashing, and in general, completely unable to sit still.  It was awful to watch and I will admit I was embarrassed by what she was doing, and then I had to go into the pool area, half drag her dripping wet to change her clothes while she cried the entire time, and the while trying not to completely lose my composure until we got into the car.  I wasn't even angry, I'm just so upset that we don't know what's wrong and how to help her.  But she loves swim so it seems cruel to keep it from her.  On the other hand, it's not fair to the other kids and the instructors to have to spend time monitoring her every move for her safety and the safety of others.  Tonight she has baseball, which she also loves, but will she be able to refrain from throwing the bat after hitting? Will she continue to throw anything she can over the fence? Will she refuse to do what she is being asked and try to run out of the field multiple times?

Possibilities behind this almost two week long situation are: change in routine because she's not going to school anymore, constipation, food allergy or sensitivity (though we don't know of any), growth spurt, a reaction to one of her supplements (though nothing is new), or something else we haven't even considered.  I've tried visual schedules, verbally talking through what's going to happen and what's expected of her, doing sensory activities before we leave the house and while we're out, prune juice to get her stomach more regulated again,  and holding off on her iron supplement for a while.  I think about what she's doing all day when she's at daycare and so desperately want to text and ask, but I'm afraid of what I'll hear back.  I don't want to take her anywhere because it's exhausting to hold her through a meltdown.

I spend my evenings reading articles, posts, and watching YouTube videos on sensory techniques all the while hoping that one of them will be the magic trick to get her regulated.  I'm three days into summer break and while I love seeing my kids faces more, I don't even feel that happy because I'm constantly distracted by how to help her and feeling helpless that I haven't.

In a few minutes I will start gathering her stuff for baseball and hoping it's not a disaster.  Then tonight I plan to connect with both her OT and behavioral therapist to see if we can't brainstorm some ideas and talk about what we need to really put in place to help her get regulated.  And wine.  There will probably have to be some wine involved because this beautiful, challenging girl is stressing me the hell out...

Tuesday, May 31, 2016

When sensory issues are big issues

Memorial Day weekend.  There’s the actual reason behind it; honoring our fallen veterans, our surviving veterans, and all others that are or have served.  It has also come to signify the unofficial start to summer, BBQ’s, time with friends and families, and of course a three day weekend.  This particular long weekend was a bit of a struggle for a particular five year old in our house.  

She finished preschool last Wednesday and just had daycare on Thursday and Friday and struggled both days with behaviors.  On Friday her behavioral therapist texted me after her session with Tera and told me that she seemed to be struggling with sensory issues.  

Let me backtrack a bit here.  Before becoming a parent of a child with special needs, I might have been among the many to jump to the conclusion that a child acting out somewhere in public might be the result of a “different” parenting style, or just a stubborn, “strong willed” child.  But now I know better.   

Are kids being more aggressively diagnosed than ever before? Perhaps, but that is because what was previously viewed as a “problem” child or “behavior issue” may truly have been a kid that has some real issues that nobody really understood or knew about before.  And for anyone who is thinking this is made up or people are being highly sensitive, take a minute and think about what it’s like to know that your child is capable of being better, but they are constantly struggling against something that other people don’t understand.  And that if those parents, and teachers, knew of tools that could help reach those children, they would try them in a second.

My child is a stubborn, strong-willed child, but she’s also one that is affected by sensory issues.  She does not have a secondary diagnosis, but there is no doubt on the part of us as her parents, her teachers, or all of her therapists, that she is in fact sensitive to sensory issues.  What are these issues you might be wondering? I’ve mentioned them here before, but essentially she craves physical input.  I have a hard time describing it to other people, but I imagine it makes her feel antsy, distracted, overwhelmed, and frustrated.  What causes her issues? That is a great question, and one that we are constantly trying to figure out.  Oftentimes her behaviors are the result of not feeling well (refer back to November through January when she was so constipated and uncomfortable that her behaviors regressed significantly and that within a month of “cleansing” her, she was making huge positive strides).  Sometimes she is overwhelmed by people, excitement, a change in her routine, or something else we are totally unaware of.  Her usual ways of reacting to these things are hitting, drop downs (refusing to move or listen), pushing, flat out refusal to listen to direction or redirection, screaming, shaking, and throwing.  One of the ways I’ve found to help get her out of this (though it can be difficult to do and watch) is hold her until she screams and then ends up crying which usually indicates that she’s on her way to coming out of it and resetting herself.

This weekend, that had to happen multiple times.  The most frustrating part is we didn’t/don’t know what to do to get her back out of this slump.  We have many strategies to try when she gets like this: deep breathing, taking a break from everyone with either Tom or me, joint compression, hard squeezes, heavy work, and having her help someone with a task.  But they don’t always work.  

This weekend she got to visit with a lot of her favorite people, but she didn’t always handle it well.  And neither did I because it’s tiring and it hurts to watch her go through this. We tried giving her lots of outside time to get our her energy, we tried low key time to let her relax, we tried time at home, time visiting, naps, no naps.  We never found anything that really helped her “click” back into her other usual self.  And this is just one of the reasons why we are exhausted; regularly.  She’s not just a five year old kid doing normal five year old things.  She needs things like joint compression, meltdowns (not tantrums), time outs (which mean time to reset for her) cold baths (she runs very hot), and constant attention.  We’re constantly looking for and open to new things to try with her; sometimes they work, sometimes they don’t.  Sometimes we realize after a week or two of this that she’s sick and that was her way of telling us.  

These days it’s hard to scroll through social media and not find something or someone that is critical of every form of parenting.  My realization, and my challenge to others, is if you can find a minute to try and be compassionate about what might be going on with a particular child, or parent, you might find yourself judging a lot less.  

I know our family and friends know a lot about what we go through with Tera, but we (and her teachers) are the only ones that go through it every day.  Even on those rare days or weeks when one or both kids are sleeping through the night, I’m almost always thinking about whether Tera is struggling that day and what advice I can offer to help them/her.  It’s exhausting to think about your child’s behavior 24/7;  whether it’s to worry about how good/bad it is to then thinking about what might be contributing to it and problem solving.  And then making sure that everyone else that works with her (teachers, therapists, coaches) also know, is more draining than a lot of people imagine.  

And then add to this mix Zoey, our other stubborn, strong-willed child.  Zoey is almost two, discovering language, testing and pushing limits, still has her own health issues that pop up, and generally loves to interact with her big sister, but on her terms.  She has also decided that her first line of defense and reaction when she doesn’t get her way is to hit (usually Tera, myself, or Tom).  So at home with the two of them, Tom and I often find ourselves more as referees than parents.  Meanwhile Tera doesn’t understand that Zoey is still learning appropriate behaviors and Zoey doesn’t understand that for the most part, Tera is still learning that too.  

So once again let me clarify that I’m not doing this to ask for pity.  I simply share this because I want other people to be understanding of individuals they might come across that they don’t understand.  Most outings for us with Tera have to be thought through logistically.  Will she be entertained enough? Will she be expected to sit for any length of time? Are there other kids and if so, will that make it better or worse? Is it a new place? Do we have backup (other family and friends that she’s comfortable with)? And if she ends up having issues, is it somewhere we can leave easily?  When we say we can’t do something, or that it might be too difficult, it’s not because we’re not willing to try, it’s because we deal with so much on a daily basis, that adding something else to that can oftentimes feel overwhelming.  And exhausting.  Have I mentioned we’re really, really tired?

Tuesday, April 19, 2016

How many more weeks till summer?

It turns out I have some really great ideas while driving. So I’m going to have to try getting my ideas out and recording them on my phone to use later so I don’t lose these gems.  

I wish I could say I had happy gems today, but after a day of PARRC testing with my most challenging class, alas, I cannot.  Let me try and recreate what I had going on in my head earlier.  

My teaching career is coming up on almost 13 completed years (minus two maternity leaves).  It’s hard to believe I’ve been doing this for that long, but I’ve learned and grown so much in that time.  For the majority of those years, we teachers have been inundated with the idea that forming student relationships is the key to student success.  And of all the “initiatives” that have come and gone, it’s the one I most believe in and to be perfectly honest, the one I’m best at.  I will readily admit that I’m a pretty good (most days) at teaching math.  But what I truly have a passion for, is connecting with my students.  It obviously doesn’t happen with all of them, and if I’m being honest, I’ve probably let go sooner than I should have some of the ones that may have needed it the most.  However, overall, I doing a pretty decent job.

But during all those institute days, school improvement days, workshops, staff meetings, and department meetings, I feel like they’ve left out a really key component of those student relationships: they can be incredibly exhausting and painful.  And that’s not to say it’s not worth it, but all that commitment comes with a price.  

I had two really great advisories when I started.  Kids, many of whom are older now than I was when I started teaching, who I still have a really great relationship with.  Kids who were with me during my pregnancy with Tera and her diagnosis.  I can’t even explain how important to me so many of them still are.  My last advisory started out with some rough students and while I was close with a few, there was a lot of transition within the group.  Then there’s my current group.  My fourth group of freshmen, and I went in with a new perspective.  I decided to do some intense work with them this first year in hopes of it paying off in the next three years.  So every week I talk to them about their goals for the next week and if they meet their goal, they get a treat.  I check in with their teachers, I work tirelessly to break them of the “everything is someone else’s fault” mentality, and I make sure they know that as hard as I am on them, I care very much about them.  Some of these kids asked in the first couple weeks if they could call me mom because I was looking out for them.  That’s a seriously intense responsibility.  Every week I watch these kids struggle with knowing they want to succeed and not knowing how to change their behavior to make that happen.  I see them promise me to be do better and then not want to look me in the eye when they fall short.   Those are painful moments.  This is an exhausting endeavor.  Not giving up on them when I know that’s what they’re expecting exhausts every fiber of my being.

Teacher burnout is a real thing.  We are asked by the state, by parents, by students, by administrators, and by society to give and give and give some more to make sure we churn out successful people.  And they want us to do this by administering multiple standardized tests that mean very little to the students, with curriculums that we often don’t believe in, in a short amount of time, and many times, in addition to being their parent, counselor, and personal cheerleader.  We also have meetings, trainings, and grading.  And with every passing year, someone somewhere wants more proof to hold us accountable so that someone who knows nothing about my classroom somewhere in the state of Illinois can say based on test scores and a dog and pony show held once every two years that I’m “adequate”.  To be truthful, this year I was proficient and considering my life these past two years, I’m mostly okay with that.

Which brings up my next point: I really am someone’s mom.  Two someones actually.  And a wife, and a daughter, and a sister, and a friend.  But so many times those other roles of mine suffer because I am so completely exhausted physically, mentally, and emotionally.  Being a parent of two kids who have more health issues than their typical counterparts, developmental delays (Zoey is now joining Tera in speech therapy), and who actually want to spend time with a mom who isn’t constantly on the brink of losing her shit, isn’t easy after days, weeks, and months as an educator also.  I’m not lying or exaggerating when I say I feel like I can only be an okay mom AND teacher because either my students have sucked out all my patience and energy or my actual children have.  

And this is where I have problems with people shitting on my profession.  Are there bad teachers out there? Of course there are, just like any other profession.  Do I want to hear yet again about how we get summers off? Not particularly.  To slightly modify a George Carlin line, “You want it? You try it!” I want to stop hearing people say anyone can do my job. I don’t pretend to think I could be a waitress: wanna know why? I suck at small talk and in general not dropping stuff.  Office job? Maybe, but I like my students (sometimes, but definitely more in October than April…) Referee? I’m a teacher so I kinda already am.  Glorified baby sitter? I love that one.  Yes, that’s why I have degrees in both Math and Spanish and a masters degree.  

I love my job (again, more in October than in April), but I’m tired of the general feeling that I owe people something.  But really, I’m just tired.   I will always work to connect with my students, but no one will convince me that I don’t pay for it with sleep, energy, and patience.  Sometimes at the expense of my own family.  Is it worth it? Yes. My students know I am there for them.  I know things I don’t want to know, but they feel comfortable telling me.  I’m sad that in nine years of education, some of them haven’t felt cared about by someone, but happy that they know I do.  

Please do not misinterpret this post.  I am not patting myself on the back or looking for praise.  Many teachers do all of this and so much more every day.  I fall short of what I expect of myself regularly.  If you know a teacher that has connected with you, or your child, in a meaningful way, let them know (via email) that way when they have a bad day, they can look back and feel like they made a difference to someone.  When you hear about a teacher strike, take a few minutes to consider every angle.  And if you meet a teacher, instead of “I don’t know how you do it!” try “Wow! That sounds so interesting.  What do you love most about what you do?”