A Beautiful Day

Here’s a clue to how Elliott’s day went yesterday.  At about 3:01 p.m., the school bus pulled up, the doors opened, and my ever-charming 4th grader yelled “Mom, why do I have to be respectful to teachers?  “That’s just too hard for me”.  Yeah, too hard – hmmm . . . not that we have not discussed it 752 times in the month of March alone, but I’m sort of lacking sympathy about how challenging it is to treat others with respect.  Deal dude. 

But, here’s the good news.  This amazing, crazy early summer like weather we are experiencing here in Minnesota pulled the snarkiness right out of my pal, Elliott.  Oh sure, he tried to remain cranky and sulk around a bit about how difficult his life is, but within 30 minutes of forced playtime at a park (cruel Mom that I am) and the sunshine won him over.  He actually did his homework, and then chose to ride his bike, hang out in the back yard, and help Dad when he grilled brats (representing his WI heritage). 

Most of all, it was as if all of us in our little family were determined to make a 70 degree sunny day in March a great one – nothing was going to bring us down.  Not even a disrespectful 4th grader . . .

Tom & I even chatted later, and it’s as if we can feel that we’re on an upswing again as a family.  After a crappy start to 2012, we are ready for something, frankly anything, to go right, and indeed it is!   Sure, for most people this might be small kind of dorky stuff, but we’ll take it.  Heck, we’ll even celebrate it – because we need good news,   and just haven’t had much of it lately. 

I’m going to own that this blog is about Elliott a lot.  There are many reasons for this – and likely the most prevalent is the squeaky wheel theory.  Everything about Elliott is exaggerated – he’s the oldest, most outspoken, he does things in a big way (sometimes good, often not so much), and he much of the time commands a great deal of attention.  I often say that Elliott’s mood drives our family.  I’m not proud of that, but because he has the most challenges, and because of his personality, that’s just the way it is.  He’s overcome amazing challenges, and yet has a long way to go.  His fighting spirit is going to catapult him to success in life, but is also what makes parenting him exhausting at times. 

But we also have Henry & Ada, and I don’t think they’ve gotten their fair share of focus on the red couch.  Now I’m going to do that proud Mom thing for a minute, so please bear with me.  This winter has been an awfully challenging one for Henry.  To say that it took Tom & me by surprise when we learned how significant his difficulties were would be an understatement.  Yes, we knew that he was having some organizational challenges (his room could be featured on “Hoarders”), and we knew that he had minor challenges with focusing at school.  When we met with his teachers, and learned the extent of his challenges, it nearly sent me into a panic attack (thank goodness for Prozac!).  We had guilt – how could this have spiraled so quickly without our being keenly aware, and why is such a big part of our lives focused on getting his siblings with ASD the right kinds of services and help to the exclusion of his needs?  Enter our amazing clinic and our medical provider who “gets” it. 

For probably the 140th time, I made an appointment, and broke down about our parental guilt, but most importantly, the need to help our little buddy get some help with his focus.  She listened, presented a plan, and then had a sit down with him (on her own version of a red couch which is more of a frog room), explained how medicine might help him and how it worked in his body, and told him she was there for him along with his parents and teachers to help make learning & focus easier. 

 

Over the course of the past 6 weeks, his life has changed in dramatic ways.  No, it’s not just about medication – lots of other things have changed too.  We met with his teachers and Principal to make a plan for how to communicate with one another about what’s going well and what needs a bit of extra focus at home.  With the help of our amazing behavioral therapy team, we’ve implemented a new after school structured schedule (which is posted prominently on the wall) which applies to all the kids, as well as some new family rules (also on the wall in a fancy color coding system that all the children have memorized).  We made a point of making “Be Respectful” in Elliott’s favorite color – green. 

Bit by bit, Henry has just come out of his shell in so many ways.  You can practically see his self-confidence growing, and he’s sharing bits and pieces about his day – other than what he ate at lunch.  He’s “getting” concepts that were difficult, and just yesterday, his teachers reported that they are noticing a big improvement in his focus, attitude and accomplishments. 

No, this does not solve every challenge he faces, but it doesn’t feel so overwhelming anymore – for Henry or for us as parents.  We know we are on the right path, and that together, we can do this!  He’s back to our smiling, creative, artistic guy more and more, and it’s so nice to have him back J

And then there is Ada.  Something has just clicked for her, and she is so much fun to be with right now.  She’s just more connected than she has been in a long while, and it’s awesome to witness.  She’s embracing the whole being cool about new hair and clothing thing, and is now even adding accessories to her outfits on her own!  Often they are more interesting than coordinated, but I sort of appreciate her confident style! 

Little things like Ada really knows how to play the Wii now rather than last year when she would just watch Elliott and have facial tensing issues.  Now she can claim victory over anyone in the house at Lego Batman!  She rocks.  Also –we expected a huge battle over giving up her winter coat and being flexible about a spring jacket (and shoes), and it was just no big deal this year.  We got them out, and she just dealt.  No huge meltdowns, no tears, nothing.  Just acceptance that the season is changing (for now – this is MN after all), and adapting.  Yeah, that might seem small and insignificant, but at our house, it is worthy of celebration.   Mostly, she’s just funny, and is having truly meaningful conversations with us, and tackling some of life’s bigger questions – like when she will get to wear bras.  She likes fart jokes a little too much – but I’m guessing with two older brothers, that’s not going away anytime soon. 

Yesterday, Henry finished his homework quickly, and spent an hour outside in his garden with Ada, teaching her how to work the soil just like an old pro.  They were smiling, having fun and enjoying their time together.  They reminded me of my Grandpa, taking their gardening seriously and planning what they would grow, and it made me smile while I sat on the deck in the sunshine and enjoyed my cup of coffee. 

It was just too beautiful a day to be inside on the red couch . . .

Idiot

Elliott called me an idiot today.  Not so much called as screamed – but who’s keeping track, right? 

So, I’m starting to sound like a broken record of “life kind of sucks right now”, and while my inner voice keeps telling me if I don’t have anything nice to say, just put a sock in it, there is that bigger voice trumping my desire to be polite that reminds me that this blog is my place to come clean and get all the junk that makes me semi-crazy out and on paper.  Granted, I’m still a little crazy – but hopefully, crazy in a better way because I have my red couch to vent.

Yeah – we’re still in the midst of some ugliness here at Casa Kramer.  Often, we’ll have a week of utter chaos, and then something will snap, and there will be a few days of peace before everything collapses once again.  Kind of keeps you on your toes to be sure. 

As I’ve said, too many times now, I’m not a big fan of the end of winter/beginning of spring time.  While Elliott has had his struggles during this timeframe for the last several years, now his siblings have joined in the fun, and it’s just a regular party of chaos around our house.  Thankfully, (and because he is obsessed with our Keurig), Elliott still makes me coffee each morning, and brings it to my room and says, every morning, “Mom, here’s some coffee for you”.  So despite the craziness of our world right now, at least I get to start the day with coffee! 

I still think E’s challenges are a mix of things – the onset of puberty (ugh), allergy season, challenges from school finding their way home, and some tweaking of medications that may or may not be working. 

Autism is so different for every person, and even amongst my two kiddos with a diagnosis, there are many ways that they have similar challenges and some that are very different.  For Elliott, I can always tell when the day is going to be a challenging one when right from the start, he looks, for lack of a better word, like he’s intoxicated.  He laughs for no reason at all, his eyes are zoned out, his words slur, and usually coupled with this fun is a huge increase in self-stimulatory behavior (stims for short).  Elliott’s stims have changed so significantly over the years, that some of the phases I have (thank goodness) actually forgotten about until they come back around again for a little visit. 

Thankfully, he is able to control them so much more than in years past, and even gets that they make him stand out in public – does not like that feeling, and does his best to conceal them in most cases.  That said, in the early days, we had some less than subtle stims that were often difficult to deal with – especially in public.  We’ve had phases of doing summer-saults across the floor – sometimes 20-30 in a row – even at Target or the Mall, walking only backwards (this was rather fun), jumping and flapping arms at the same time, sometimes just one or the other, hop walking which looks sort of like moon walking but less cool, raising his hand in front of his mouth every single time he spoke, giant blinking, opening his mouth wide again and again, etc.  Over the years, they have become more and more subtle, and less obvious to anyone who is not with him a lot.  In recent months, we’ve dealt with chewing on his shirts, licking his bottom lip so severely it becomes infected, facial tensing (not giant open mouth, but a brief tensing moment), smelling odd objects, etc.  Again, not crazy different from people who tap their feet, or twirl their hair, but for Elliott, the intensity is much more prevalent then for the average person. 

Today, it was like a visit from 5 years ago.  He was making odd noises all day long, randomly yelling out strange words or sounds, giant open mouth tensing, hop walking, jumping, and chewing on his fingernails until they bled (even with no-bite applied).  It’s painful to witness, and I hate that these days happen for him, and only wish I could understand how and why they do.  At one point today, I just excused myself and cried – it’s just overwhelming to be around, and it is so much more like needing to keep track of a 2-year-old than his actual age of 11. 

Then there is school.  This one is sort of new for us, and I’m still coming to terms with how to deal with it.  Elliott has been homeschooled for many years, and then last year, started attending a very small Montessori school.  When the academics just became too challenging for him, and we realized that he truly needed the expertise of special educators, we enrolled him in public school.  He is in a special ed. classroom part of his day (reading/writing, social skills, etc.), and in the regular classroom for other subjects (math, social studies, etc.).  As much as he needs special education for part of his day, there are kids in the classroom with their own unique set of challenges that Elliott is now learning from. 

Yes, I get that that happens to every student.  I’ll never forget when little Henry learned from a little first grade girl that there was something called an “f” word, and it was really funny.  He had no idea what it was, but really wanted Tom & I to tell him.  Nice.  For Elliott, who struggled with severe aggression in his early years, it scares me to death to hear about students in his special ed. classroom hitting the teachers or being carried off down the hall for aggressing towards others students.  While every student with autism has their own unique challenges, including Elliott, I’m not thrilled that he’s learning new and different negative behaviors from school.  Yeah, it’s great that our child with autism learns from his environment – it’s just that I wish he’d pay closer attention during reading than learning from his fellow students to say “no” when adults ask him to do something. 

Maybe this would have been different had he been in public school earlier in his life.  But I don’t regret the path we chose for him, because we did what we thought best for Elliott and our family along the way, even when it was hard.  I get that part of this is that he is suddenly immersed in something new, and that hopefully, this is just an experimental phase.  Worst of all, this makes Elliott’s school sound less than positive, and nothing could be further from the truth.  He has an amazing school community that embraces Elliott and our family, and we work with tremendous educators who care deeply for each and every student.  Believe me, I’ll bet there are parents sitting home right now frustrated that their kids from Elliott’s special ed. classroom is coming home with crazy new behaviors like giant blinking and facial tensing that they’ve learned from Elliott, just as I’m frustrated my kid is calling me an idiot.  It goes both ways.

I think it’s just that this is new to us and I’m not sure we’ve come up with the best ways to handle it.  It’s taking the good with the bad, and making the best of it.  Though it makes me really think about how we want to handle Ada’s placement when she starts Kindergarten next fall.  It’s always something, isn’t it? 

When life gets overwhelming for me, and autism seems to permeate every corner of our world, I either find myself airing my dirty laundry here at the red couch, or I throw myself into some project that while hopefully benefits my kids, also gives me an opportunity to have an outlet outside this house.  This time, I’ve done both.  You’re putting up with my venting, and soon, I’ll share a little bit more about a project I’ve been working on as part of my volunteer work with Autism Speaks.  So, on top of everything, I’m struggling with some balance issues in life, but who isn’t, right? 

At the end of the day, I realize that we all have our share of challenges – and they are just part of life.  I also know that these difficult times will only make the good times seem sweeter.  And most of all, I have hope.  Even today, in the midst of one of the most challenging days we’ve had in a long while, I shared a brief moment with Elliott that reminded me why we work so hard every day, and why we’ll never, ever lose hope.  In the middle of the craziness, he called me to the red couch, and leaned his head against me for a moment and was just calm.  I felt his body relax, and then he looked at me and said “I’m sad that today is so hard for me”.  And then he was gone again. 

But I’m looking forward to a lovely cup of coffee tomorrow morning, brewed with love (and some really cool buttons to push!)