Wednesday, May 16, 2018

But can I really handle this?

This past month has brought so many challenges.  Tera went from struggling for weeks at home without reason, to improving at home but struggling at school (without reason), to an amazing week with five straight great days (without reason) to several bad days (some worse than others, all without reason).  Having lived through this for seven years now, you'd think we'd stop torturing ourselves with looking for the seemingly elusive reason, but gluttons for punishment that we are, we just keep asking, "why?"

In case you hadn't figured it out yet, we still don't know.  We don't know the reason or thinking behind most of what Tera does, good or bad.  What makes five great days one week followed by a series of really pretty bad ones the next week.  Sleep? We don't have any answers for that inconsistent lifestyle either.  You would assume the day following a particularly bad night of sleep, of which there have been several lately, would affect her behavior, but those days are usually fine.  Allergies? Most days lately I want to physically pull my eyes out to scratch them and my nose may not be attached for much longer so the allergy struggle is real over here.  Tera does seem to suffer from seasonal allergies so when the behaviors started I remembered finally to start her allergy meds up again.  That may have helped temporarily (or maybe it's just coincidence), but either way it doesn't seem to helping lately and her symptoms aren't visibly worse so I have no gauge for if that's the culprit.  Change in diet? Nope.  Illness? None that we're aware of.  Change in routine? Ding ding ding! Because guess what? It's the end of the school year and Tera does not handle change well. 

This is a kid that might have a had a terrible week and a rough weekend, but will have a great Monday.  Know why? Her routine is back! So now here we are: the ABC countdown to the end of the year, different activities, changes in weather, lighter outside later, you name it and there is a definite change coming, and Tera thrives on routine.  That's not to say that any day not in school is a disaster.  She is capable of new and different things, but it typically comes with a lot of preparation and explanation and I think in the back of her mind she knows she'll have a comfort safety net somewhere. 

I read a post a few years back that just yelled to me, "Yes! this is our struggle too!"  It was from a mom of an autistic child who wrote that summers for her family were miserable.  While everyone else was on vacations and weekend trips to the beach, she had to struggle to maintain as normal a schedule as possible for her son.  And that while everyone else was running towards summer, she was terrified of it.  While it is nowhere near as dire for us, there is a lot of conflict on my part when I realize that the best part of the year that I have with my kids is also a time of difficulty for Tera.  When I have them both at home, she does fine most of the time.  We spend a lot of time playing outside and in our little inflatable pool, but I can't take them anywhere by myself for something fun because I have absolutely no idea how she will react.  Then there's daycare.  I keep the girls there two days a week because I'm almost always involved with something for work and because I can't take them places, I need some time to get things done.  Plus, it keeps their routine of being there.  But even that is a struggle for Tera at times because it's not as structured and since she's not in school, it's still different. 

This year will be even more different.  She's not doing summer school because we weren't happy with it at all last year and the timing conflicts with our vacation and her surgery.  Because of these two things, there's really only about three weeks that she'll be there, but I'm already stressed about it.

So here's the current situation.  There's an internal pity party going on in my head lately, and it's a pretty rocking party sometimes.  Once again, I'm tired.  I'm tired of all that teaching takes out of me and how much of my attention and energy it takes from  my own kids.  And I'm tired of a lack of sleep and the stress at home and all the attention and energy it takes from my students.  I'm tired of the puffy eyes from crying when I just don't know what to do anymore.  We're supposed to be her experts, and we don't have the answers.  I'm tired of having to spend my limited time with her trying to help her make the connections she needs to make good choices.  I'm tired of losing my patience with Zoey over things that are completely age appropriate (although still difficult to deal with) because I'm so distraught over how to deal with Tera's issues.  I'm tired of Zoey having to navigate Tera's emotions while trying to figure out which version of her sisters she's currently dealing with; super happy, doting, attentive, silly, awesome playmate or volatile, physical, unpredictable threat.  I'm tired of wondering why she is the lucky one that gets to deal with the confusing emotions, inability to cope and successfully manage her impulses, sensory sensitivities, dependence on routine, OCD tendencies, and also hypothyroidism, asthma, and an impending open heart surgery.  Oh yeah, and she has to work harder to do almost everything in school and just to put together a comprehensible sentence.  I'm tired of her not being able to do "fun" activities because she has three therapies a week.  I'm tired of having to decline invitations to places because we know it will be too much for her and honestly, too much for us.  I'm tired of never being able to relax when other people are over or we're other places because again, we never know how she'll react. 

It's May and I'm TIRED.  I don't know how much I have left to give, but I have to keep giving because it's not over yet.  And this summer, while I know it should be limited to just this summer, I get to "recharge" with Tera undergoing arguably the most important and serious procedure of her life.  She LOVES being outside playing and swimming and that will be more limited this summer and I hate that for her.  She is one of the strongest individuals I have ever met in my life, and she doesn't even know why. 

She had a particularly rough day today and after me crying for the second day in a row (yes, despite my tough demeanor I have an inexplicable and incredibly annoying tendency to cry which I hate), I sat down in our room while Tom sat with Tera to write apology letters to the three (did I mention it was a bad day?) friends she upset today.  I sat and wrote in my journal all the things on my mind.  I've moved from the paragraph form of my younger days of journaling to more of a bullet point, yelling type of journaling, but it works.  Much of it is here, some of it is not.

So how do I handle all this? First, I come from long line of women capable of dealing with shit.  I have an incredible partner in all this chaos that is absolutely involved in all aspects.  I have incredible friends that are always there for me.  I have incredible sisters that are always there for me.  I have incredible parents and in laws that are always there for me.  I have incredible students that understand that I'm not perfect and that sometimes I need a break.  We have designated a weekly date night for the summer thanks to our amazing sitter so that we can try and recharge together.  I have a beautiful screened in room that my husband has put so much work into that I'm currently enjoying and that brings instantaneous peace.  And we are fortunate enough to have a home and life that allow us to do things that so many other people in far more difficult situations do not have to fall back on.  So in my darkest moments of wondering, how the hell am I going to do this, I try and remember that I have all this and that so far, I've survived everything that has been thrown my way. 

Stay tuned, this summer promises to be full of updates...

1 comment:

  1. Hugs. Thanks for sharing so openly. We have some of the same struggles with summer - I've been trying to plan ahead for schoolwork at home (so we don't lose some of the gains he made in Kindergarten) and fun activities but a focus on routine. My older kids both have different camps and classes, so I know that will impact how Ben enjoys each day. Hang in there.