Small Miracles

Sometimes great moments in life are huge and over the top like winning the lottery or finishing a marathon, etc. Other times, they are quiet and small, so you almost trip over them, or miss them all together. That’s what happened to me last week – I was so preoccupied with “stuff” that I almost missed something monumental. Now that I’ve had a few days to ponder the awesomeness of it all, I woke up today compelled to write it down just so that I can reference this story when we hit a more challenging fork in the road- and if you’ve ever visited the red couch before, you know it’s coming!

Here’s the deal – I don’t like assessments. As a parent of 3 – 2 with ASD, I have learned to dislike any type of testing and reviewing of “progress” as measured by any number of tests. No matter how jazzed I get about what we as parents know our kids are achieving and learning, those damn percentages and age equivalences just make me sad. And yes, I know that my kids, heck – all kids, are more than a test score, but sometimes, it still stings more than I’d like it to.

With Elliott finishing up his first year in public school, it was time for our first annual IEP review for him. I don’t know why – but even the letters IEP just make me uncomfortable. The year has had a great number of challenges for the E man, and while some of what he’s accomplished has been pretty amazing – going from nothing larger than a one-room educational setting to feeling comfortable navigating his own elementary school complete with a lunchroom and recess playground (no easy task when you have serious social challenges and are not thrilled about change), academically, his gains were fairly minimal. I suspected that would be the case – especially as his annual assessments at the Univ. of MN indicated as much just a few months ago. Still – not easy news to digest.

Not a day goes by that I’m not researching reading comprehension programs, reading a new book, trying a new technique, asking E’s tutors to try a new approach, going back and reviewing something we tried years earlier that maybe he just wasn’t ready for, etc. in an effort to finally find a way to tackle his reading comprehension road block that keeps him testing at the 1st grade level. Ugh. It can be exhausting and frankly, a little depressing.

Then there’s my sweet Ada. Last week was a big week for her as well. Not only did we have her 6-month review for therapy, where we learned that we are beginning a long, slow fade of her therapy services as she begins Kindergarten this fall, but she also had abdominal hernia surgery so that she can finally wear the tankini’s that she so adores.

Lots of assessments, lots of meetings & appointments, and Henry’s last spelling test of the year. Henry is amazing at many things (especially now that we have the iRobot Roomba to use as incentive/bribery to hold over him) but spelling is not one of them. Can’t lie – it will be nice to have a bit of a break from spelling practice.

In spite of our crazy week, we’ve been excited to participate in our medical clinic’s new “Family Exercise Night” on Tuesday evenings. Each week, we gather as a group to walk/run together as we gradually increase our mileage in hopes of eventually reaching the 3 mile mark. Gretchen (our fearless leader) has a hope of having us participate as a clinic team in the Twin Cities Marathon family event day 5K, in addition to promoting health and fitness for families (she even hands out fun healthy recipes each week!)

Every week, there are different people/families that participate, though there are a few core folks who are usually there. And believe me when I say that when this idea first surfaced, I thought for certain we would go one time, and never do it again. Certainly, one of the kids would have a challenge too great to prevent us from taking part. There are so many ways this could have gone wrong – different routes every week (always difficult for Elliott), obsessions with stoplights (Elliott), staying with the group (Ada), darting out in front of vehicles (Ada), only listening to his iPod and not interacting with the group (Henry), social interactions with new and different people each week (all of us in our own way). I’m happy to tell you that I was wrong – in fact, wrong in a big way.

I kind of get teary even thinking about how far we have come since this started in April – but it is the kind of monumental stuff that sort of sneaks up on you. No, not everyone is at their best every week, and yes, sometimes E gets a little funky about the talking stoplights on Hwy. 13, but guess what – we just work through the hard stuff as a large group, and guess what else – we’re not the only ones with challenges. Others have darted too quickly across a street, or had to learn to stay in the white lines on cross-walks, etc. Some people are slower and some are faster, and we need to wait for one another before crossing streets and be cool with it. We get to chat with different people every week, and practice being social as a family with other families who have their own issues (this is not a special needs group – but let’s just say the special needs community is well represented in a myriad of ways). We’re exercising – but really, it’s so much more than that. It’s a great big learning opportunity that happens to be fun and healthy – and when the heck does that ever happen?

Best of all – it’s now our kids favorite part of the week. They can’t wait until Tuesday, when they get to lace up their running shoes, and head to the clinic to see what route Gretchen has planned for us that week.

So last week, with my mind pre-occupied with the craziness of our world, we loaded up the van and headed down to the clinic on Tuesday night for exercise as usual. It was, as always, awesome and crazy and fun and filled with learning opportunities for our off-spring. Because the week was nuts, I had not made dinner, and during our walk, learned that most of the other families had not either. Somehow, we all collectively decided that we should all go to Wendy’s after our 2.75 mile walk, and while the idea of eating fries after all that exercise might seem counter-intuitive, it was one of the most awesome experiences our family has ever encountered.

Everyone ordered, and because it was not busy, we sort of had the big room to ourselves. Get this – we had an adult table and a kid table, and everyone was amazing! As I sat eating my spicy chicken sandwich, I just remember looking over, and watching all the kids talking together, playing together, getting to know one another, and having genuine fun. This might be the kind of experience lots of families are able to take for granted, but not ours! For us, it was earth shattering stuff. This amazing group of young people, with a variety of strengths and challenges, had a great time hanging out together after accomplishing 2.75 miles on the open road (well, ok, more accurately the sidewalks of Burnsville). Heck, we were even able to converse as adults – that’s crazy cool!

So much for that “minimal progress made” IEP. It might not be measurable according to standardized tests, but small miracles do happen – apparently for us at Wendy’s!

Amazing Moments & Death Threats

Wow – what a week it’s been. The last 7 days have been filled with dramatic highs and gut punching lows. And so even though my paperwork pile is overflowing, I have an extensive list of thank-you notes to compose, and my supply of Keurig K-Cups is dreadfully low (and no one wants to be around me without coffee), I feel compelled to spill my guts here on the Red Couch.

Let’s start with the amazing stuff, shall we? I think it might help to frame what will happen next in our story . . .

Several months ago, over dessert and coffee (ok wine for some of us), a group of amazing Autism Moms gathered to talk about what keeps us awake at night. Many of us originally met when our kids were in preschool, and had just recently been diagnosed with ASD, and now many of these kids have already started or are soon to begin middle school (gulp). Let’s just say transitioning to young adulthood may have come up once or twice . . .

We decided our goal was to bring a young man named Jesse Saperstein to MN, and we convinced 3 sponsors to help us do just that. Since then, it’s been a blur of a few months putting all the pieces in place for this event to be a success. And last week, that is exactly what happened when Jesse arrived in MN for his 3-day whirlwind visit – in a word, he was amazing!

Last Thursday, as I listened to Jesse speak to a group of students at Falcon Ridge Middle School, it was difficult not to become emotional. He “connected” so effortlessly to this room full of students and faculty, and empowered every person in the room to feel accepted and to make a difference. At that moment, I remembered being awake way too late one night last fall worrying about what the future holds for my children – and opening up a copy of Jesse’s book. It filled me with hope and I knew then and there that I wanted to hear him speak, and that likely, other people would as well. Watching the students file out of the room, many posing for pictures with Jesse and so clearly having been impacted by his story, I had a feeling of pure gratitude that for some reason, the stars had aligned, and that Jesse was making a difference in my own community. It was such a joyful feeling – just as it was when the Great Room at the Mall of America filled to just over 300 (our goal had been 200) people to hear Jesse that evening. That an idea born of hopeful Autism Mom’s over chocolate & wine could come to be – and that a young man from New York with Asperger’s Syndrome could share his challenges and accomplishments and inspire so many – it was pure awesomeness!

Then it was Friday morning. I was preparing to drive Jesse to his final school appearance in St. Louis Park when the call came. Likely it didn’t help that I had slept a total of about 5 hours all week, and was emotionally drained even before it happened. Yep, as I was still on an adrenaline high from the week’s events and the crazy schedule of the last few days, autism sucker punched me back to reality, and it was not pretty.

Elliott’s teacher from school called to share that during lunch time on Thursday, Elliott told a fellow student “I’m going to bring a gun and bullets to school and kill you”. The child’s parent had called school to report the incident, and that Elliott was being suspended. I could hardly breathe. I felt sick. I felt pure dread and sadness for this poor Mom who must have been frightened and worried about what her child shared with her – not realizing that Elliott had no idea what he was talking about. Instead, I picked Jesse up in my minivan, and drove him to St. Louis Park so that he could talk to 5th graders about anti-bullying, while Tom picked up our son from school for making a death threat. Ouch.

To say that starting in public school has been a transition for Elliott and our family this year is an understatement. While Elliott has an amazing school with a tremendous staff that has welcomed him and our family with open arms, it has been a challenging year. All the little things that kids have been gradually learning about (social rules and school “stuff”) throughout the years is something Elliott is getting a crash course in – and in many cases this year, is not handling very successfully.

Elliott is in an autism classroom for a chunk of his day because of his learning disability – yet the friends he learns with come with their own set of strengths and challenges. While there are very likely some families out there lamenting why their kids are coming home with some interesting new faces or body movements, Tom & I have been less than thrilled with the interesting vocabulary words Elliott has learned (idiot comes to mind), that he is now saying “no” to teachers and calling teachers by their first names, or that he has become very interested in a young man who is obsessed with guns and war.

You see, the very second I heard about what Elliott had said, I knew where it came from. E loves to spill the dirt about what everyone else in class is up to, so we often have colorful dinner conversations. Just this week, he mentioned “Mom, there are some real issues on my bus. Lots of unexpected behaviors that are not good”. Of course, if we ask him what ownership he has in the challenges on the bus, the conversation ends abruptly. Thankfully, we have great bus drivers who keep us in the loop.

Sadly, this death threat happened at lunch time when Elliott (rather unsuccessfully) was trying to make conversation with some boys at the lunch table. Lunch and recess are by far the most challenging times of the day for Elliott and many kids with autism as they are less structured, and involve the need to socialize in ways that continue to be terribly difficult for Elliott. He very likely enjoyed the attention he got from saying something that gathered interest (even if it was negative) because he was noticed.

As the weekend progressed, I stopped crying long enough to reach out to some friends (several included the wine drinking, chocolate eating autism Mom friends in fact). It felt good because they immediately “got” it, and all thought that we should chat with E’s school to talk about why this may have happened and how to prevent something like this from occurring again – and to keep it out of his permanent academic record because it was not a legitimate threat – as noted on the suspension form. (I should note that E’s version of what he said was “I’m going to bring a gun to school and pretend to kill you” which, although horribly inappropriate, is not as awful as the suspension form version reads. My money is on E’s version as the kid has a memory for details like no one else I know.

And so, Monday morning, Tom & I, emotionally distraught (ok mostly me, but Tom had to deal with me) along with the amazing Rachel from Lovaas who agreed to join us to help us bridge the school to home consistency piece – met with E’s school.

Here’s the deal – we may not have agreed about everything, but they listened to us, and they heard us. I’m still not certain suspension was the best course of action for what happened, only because E truly didn’t comprehend what he said. But, we talked it out, the form is not going in his permanent record, and most of all, I believe with all my heart they truly want the best for Elliott, just as we do. I genuinely like every person I’ve ever met from that school – they are just good people.

In some small way, I actually appreciate that some aspects of autism can be as troubling for educators to understand and know how to handle as they are for me as a parent. It’s validating because I often feel like I’m alone in not knowing how to best help Elliott “get” certain things. Why is he listening so intently when a classmate is discussing guns, yet still test at a 1st grade level for reading comprehension? Why does he remember every hotel room number we’ve ever stayed in, but not know how to appropriately join in playground games? Why does my beautiful boy need to summon me to the red couch, with tears streaming down his cheeks, and ask me to help him get the autism out of his brain? It’s not fair, and it hurts. Ugh.

And so it is that Autism has provided me the highest of highs and the lowest of lows during this past week. It is a stark reminder that we have a long way to go in preparing Elliott for life, and that’s daunting and scary right now. Looking back at how far we’ve traveled together, I know we can do it, and I know this is not the only time things will get this hard. But if spending 3 days with Jesse Saperstein has taught me anything – it is that hard work and persistence pay off. There is hope for my boy, and I will never give up.

Thankfully, when the days get hard, I know I can call on my Autism Mom friends. It’s amazing what a glass of wine and some chocolate can do . . .

I am Aware

Today is April 1st, and the start of Autism Awareness Month. As last week was spring break for all 3 of my offspring, I feel like I am about as aware as one can possibly be when it comes to autism. And with the news from the CDC last week that autism is now affecting 1 in 88 children (1 in 54 boys), I am not alone.

When Elliott (11) was diagnosed with Autism at 2 yrs., 11 mos., I quite literally didn’t know of any family dealing with autism. Frankly, when the word was first mentioned concerning Elliott (oh that poor early childhood special educator), the only reference point I had was “Rain Man”. It was completely foreign to Tom & me. Now, you would be hard pressed to find someone who does not have some sort of a connection to autism. It’s crazy.

The world of autism is a disjointed community. We don’t have enough answers about what autism is, how you get it, or even how to help those that have it, and just like anything else, there are a myriad of disagreements that in many cases just cause us to spin our wheels. I wish it were easier for us to find some common ground, but then again, I was raised by hippies preaching peace and love, so that’s just my vantage point . . .

Mostly, (and I’ve taken heat for this) I don’t spend much time thinking about how or why Elliott & Ada got autism. No matter what, they have it, and we need to concentrate our efforts to help them, which is no small task. It takes up the vast majority of my life, and I have little left over with which to think about what happened or didn’t happen or what caused them to hit the genetic lottery of ASD. It just did.

Would I like answers – of course. I don’t wish some of the challenges we have had to face on anyone – even the jerky, snooty woman walking into the Galleria yesterday who just had to get to Coach (ok, if she could just deal with some poop smearing for an afternoon, I can’t lie – it would make me smile).

And this doesn’t mean I don’t want someone working hard to find these answers. I spend a great deal of time and energy volunteering at Autism Speaks because they are focusing their efforts on supporting families and finding these answers. Yes, we need answers, but at the end of the day, Elliott & Ada have autism, and my focus needs to be on helping them.
In the last week, I must admit that some of what I’ve heard and read has been painful. With the CDC numbers on the rise, people are taking notice. Believe me, no matter what your awareness level is, that is one lottery people know enough not to want to hit. Unless you have a close connection to ASD, you likely don’t really get what autism is, but you know it’s something you’d rather avoid if at all possible.

One Facebook ranting that I came across was about blaming parents for being emotionally vacant, kids lacking social interaction skills leading to an ASD diagnosis. Parent blame – yeah, that’s already been tried in the ASD world, thanks anyway. It took restraint for me not to go all “refrigerator Mom” on her, but who’s got the time.

Some articles are focusing on the theory that we’re just better at diagnosing ASD now, and that’s why the numbers are going up. It’s true that we’re getting better at diagnosing – after all, those doing the diagnosing are getting plenty of practice these days! But, (and I’ve thought about this for a long time now) if that were true, where are all the kids like my Elliott who are now in their 40’s or their 50’s? There should be 1 in 88, so you’d think they’d be easy enough to spot – especially since they didn’t get the help they needed when they were younger.

I’m going to be 45 this week (gulp), and guess what – I didn’t know one person anything like my Elliott in my entire school or town growing up. Looking back, I can recall one kid in junior high who was exceptionally bright, socially challenged, and obsessed with space stuff who likely had Asperger’s (undiagnosed, of course). But that’s it. Better diagnosis is but a fraction of what is going on. This is a huge challenge with too many questions and not enough answers. It’s not as sexy as other health challenges, but it’s mighty expensive, so sooner or later, it will force its way into everyone’s living room in one way or another.

One question I’m asked a lot by people who just genuinely are trying to understand/care is what is autism? Wow, do I wish there was an easy answer to that one. Autism presents differently in every single person it affects. Even amongst my two children with an ASD diagnosis, there are major differences and some striking similarities.

Here is how the Autism Speaks website explains what autism is: Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.

For Elliott, autism means that he can spell at a 7th grade level, and can fluently read and decode words at an age appropriate level, but only comprehends what he reads at a 1st grade level. He makes some odd noises now and then, and has a temper that explodes off the charts when things don’t go his way or how he expected them to go (i.e. if Dad picks him up in the car instead of me in the Van, and this could take him an hour or more to move past). He has very few typical leisure skills and unless we give him structured lists of what to do and when, he would spend his days following us and talking constantly – though not conversationally, just talking at us. His attention span is severely limited (even on medication) and the only TV show he has watched in its entirety in the past year was an “Undercover Boss” that focused on Oriental Trading Company which is one of his obsessions. (Guess where he wants to go for summer vacation?)

That’s a snapshot of some crappy stuff. Here’s some cool stuff, and yes, he is full of awesomeness especially when it’s not a really difficult spring break – if you tell Elliott your birthday, even in passing, he will never, ever forget it, and will almost certainly send you a card. He has an amazing memory for dates, and it’s kind of cool the stuff he can recall even years later. He even remembers the hotel room numbers for almost every hotel we’ve ever stayed in since he was a toddler. He’s very outgoing – sometimes a bit too much so, but he loves people. He’ll talk to anyone, and genuinely enjoys meeting new people and going new places. He is loyal, and loves his extended family and school to the ends of the earth. While he’s still learning how, he is motivated to have friends.

For Ada, if you did not know that she was on the autism spectrum, you might not notice anything different for quite some time. She does not talk as much as other 5-year-old girls, and her language is less complex. Her imaginative play is not as involved as her peers, and she has a harder time joining group activities. She has periods of time that her hyper-activity is very apparent, and other times when she is low-key. Sometimes she talks about Impala’s too much, though it comes and goes. Unlike Elliott, she has lots of terrific leisure skills, and is very interactive with her brothers and other kids – but she does way better in small groups. When Elliott is struggling a lot with noises or odd body movements, she is very apt to imitate him, which presents its own challenges.

Again, this is but a tiny snapshot of what autism feels like in our house (and from the vantage point of an exhausted Mom after a pretty tough spring break week of medication changes, strep throat, and too much together time).

Yesterday, I had lunch with an old friend who is not a parent, but who genuinely tries to “get it”. He asked me if I could travel anywhere in the world for a long weekend, where would I like to go. Truthfully, I told him that even if I could spend a quiet weekend in Dubuque, Iowa in a Super 8, that for me that would be an enormously appealing adventure.

You see, I’m tired. Autism, for me, has moments of crazy intenseness and chaos (like much of our last week due to E’s medication changes which will hopefully help him), and then days of regular intensity. But, it’s always there, and it never takes a break, and I’m always waiting for the next wave to hit. It’s a state of constant adrenaline, and I feel completely exhausted today, and a little sad because I don’t like that feeling of being a bit bullied by autism.

A few years ago, I had the chance to travel to Boston with just Henry when my nephew was born. I think of this trip often, as it was a giant wake-up call and a realization of how different my life is. It was like a weird science project – feeling how it must be for lots of families out there who don’t have a child with autism. The biggest difference was just the ease of being together – a connectedness that just naturally happens. It was just so easy to be with him, and hang out. Our tensions just melted, and the feeling of being on edge disappeared.

As difficult as this week has been, I won’t give up hope that together as a family of five, we can achieve that same type of feeling for even a brief moment one of these days. Just like everything worthwhile in life, it likely won’t be easy, but we’re not afraid of a little hard work. One foot in front of the other.

Until then, I will dream of a Super 8 in Dubuque and a little peace and quiet . . .

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 4^th 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 4^th 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 140^th 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!)

Feeling Crappy on the Red Couch

Yep – life is kind of crappy right now. Warning, if you are looking for a poignant, uplifting story about autism, this is not going to be it. I apologize upfront that I’m in a bit of an ugly place, and sometimes, at least for me, this involves venting from my red couch. When I’m really cranky, like today, it makes me feel better to say bad words – so I’m going to indulge. Crap, crap, crap, crap. Yeah, I know, crap is not an all-together horrible word, but maybe not as cute when used by 5-year-old girls (i.e. Ada playing with some of her animals in my closet yesterday walked out and said “Mom, you have too much crap in your closet, but Dad’s is nice and clean”). Yep – it’s true. I’ve corrupted my child, and I have too much crap in my closet. I own it.

Damn, I really thought (and was told by my Uncle Mike – more than once), that one great thing about having 3 kids is that at least 1 of them will be in a good place at any given time. Well guess what, Uncle Mike was wrong. Crap. Maybe I should have paid closer attention to the fact that most of my conversations with Uncle Mike took place after he had indulged in a cocktail or two.

I know I’ve said this before, but it feels especially true right now. Sometimes with autism, at least the autism that exists in our house, it’s not so much the giant differences that make things so challenging, but the constancy of the little things. Autism really truly never takes a break, and sometimes I could really use one.

This winter has been a huge and challenging time for Elliott. I have a feeling it’s a multitude of things – including (gulp) the beginning of puberty. Crap. For several weeks, our days began with screaming, and ended with screaming, and I’m not talking about the cute stuff either. Big, ugly screaming complete with raising his hands to us.

I’ve touched on this before, but for those who may not be aware, Elliott has a history of very challenging aggression, and I live in constant fear of revisiting the horror we lived through. Granted, he was too young to remember it (2-3), and thank God neither does his brother who was his most frequent target. When we started behavioral therapy, we documented over 100 aggressions per day. It was a living hell, and even thinking about it for a split second makes me anxious.

So, when his meltdowns began happening more and more frequently this winter, and the one day when I was asking him to go to his room until he could calm down and he raised his hand as if he were going to hit me, I knew it was time for help.
While I joke about being on Prozac a lot (it’s actually Zoloft, but Prozac just sounds more fun to me), it has been a tremendous help to me since autism became part of my life. That said, while I’ve read many accounts of families needing to go the route of an SSRI for their child with autism to help them, I’ve also hoped that would never be us. It’s never easy to be in that position – as I don’t like the idea of messing with a developing brain – but that’s just one of those hard choices we as parents are dealt, and I can only hope we’ve made the right one. Crap. It’s been a couple of weeks, and (knock on wood) so far, so good.

Henry – well, I just can’t go there right now. I’ll need to revisit that one publicly after I’ve had more time to process it. He’s struggling right now, and we don’t have a solution in place that’s helping as of yet. This one is killing me because frankly, I don’t know how to parent kids who don’t have autism. It feels foreign to me, and I’m not at all confident that Tom & I are helping him in the most effective ways for him. We know he has ADHD, and are learning that it is much more serious than we thought it was. This is just raw and painful right now, and while I know we will get through this, it’s not that fun in the moment. Crap, crap. In spite of all that is challenging for him right now, he is for the most part, blissfully unaware of feeling stressed or worried. I can’t say I don’t envy him for that sometimes . . .

Ada has many strengths, and among them are learning from those around her. Unfortunately, when you spend a great deal of time with your 11-year-old brother who is experiencing a multitude of challenges, they start appearing in new and interesting ways from a 5-year-old. Crap. When Elliott is struggling, it is with almost certainty that Ada is too. This is challenging and painful for me, because in many ways, it feels like the past revisiting again, and not in a good way. As we prepare for her to begin Kindergarten this coming fall, and are beginning to make choices about what school, what type of classroom she’ll need, what kinds of supports she’ll need to be a successful learner, well, sometimes it feels like the weight of the world is upon us to make the right choices for her. She has worked so hard, and it hurts to see her in a tough place right now. Crap.

Man, parenting can be really difficult sometimes. We’ve had a few weeks that I won’t miss, and know that in a few more when things start to look up, these challenges will only make the successes look brighter. But for now, I’m sad, overwhelmed, and cranky. Crap. Now that I think of it, maybe Uncle Mike was right. Not necessarily his sage parenting advice, but about the occasional cocktail. Cheers!

Old Man

Yep – I’m glad January is gone. No, I’m not here to complain about the weather (good Minnesotan that I am), as it’s been so warm and nice around here this winter, well, I just can’t go there. January in our house has a history of being a really difficult month filled with all the ugly elements of autism that are just not fun for any of us. This January was no exception . . .

I’m sure there are a myriad of reasons why January is the pits, and you know what – it’s not all about autism – I get that. January is, let’s face it, kind of crummy for lots of people. The holidays are over, no one is eating junk food, gatherings and social events are minimal, and the festive sprit that envelops much of November/December in general disappears into the cold reality of “getting down to business”. I think for us, it’s a loss of “relaxed” time, and even though this happens for us every year and I should not be surprised that it’s an issue once again, it’s about going from a lack of structure to lots of structure that seems especially difficult for all our kids. Heck, maybe there is something to the Vitamin D thing as summer does tend to be better for all of us – I don’t know.

Worst of all, when Elliott started having more and more challenges as the month of January crept by, (arguing, bugging kids at school, calling teachers by their first names, flushing every toilet in the school bathroom just for fun, making new and interesting noises and clicking sounds, and a basic need for extreme control over everything in his world), his sister starting doing many of the same things – but with her own unique twist.

I know I’ve said this before, but it’s like watching an old terrible movie, where you know the ending, and it’s not good, but you can’t stop it. Except – maybe we can, but maybe we can’t. Ugh. Knowing the challenges Elliott has faced, and then watching my little girl start down a similar path at a similar age is unbelievably painful. I hate it.

Then, add in a pinch of Henry facing his own struggles at school (not academic, yet, but his organization skills are challenging him enough to affect his school performance), and well, it’s not been a fun time around our house. (You know it’s bad if I have not even considered a margarita!)

In the midst of all this ugliness, last week, something kind of cool happened that has made me do a lot of thinking. One day, after school, Elliott had a giant melt-down because we were not going to be able to make it to “Culver’s Night” at his school from 5-6, but because of his friendship group, we would need to attend from 6-7. This literally shook him to the core, and after 45 minutes of him melting down on the red couch, he asked me to join him. We worked through the time change – could the world survive our arriving at Culver’s at 6:10 rather than 5:00, or would it be better to forget the whole thing? Would Culver’s still have cheese curds at 6:10, etc?

All of a sudden, Elliott looked at me, tears still running down his cheeks, and said “Mom, I don’t want you to order kid meals for me anymore at Culver’s because I am not a kid – I am an old man”. Whoa – where did this come from? I was already in the zone for repairing the meltdown surrounding a schedule change, but kid meals, and old men – yikes! When I got myself together, we compromised on “big guy” rather than kid or old man, but the bigger issue is that Elliott is growing up, and in his own way, is asking for more independence and acceptance. Man, that’s kind of big, powerful stuff, and while this does not negate the crappy January that we had, I think he has a point. He is growing up, and sometimes, I am hesitant to recognize that or treat him like an 11-year-old because of autism. There, I said it.

So much about growing up is difficult, and sometimes living/working through the tough stuff on your own is key to becoming your own person. I think, in his own way, Elliott was asking me for more freedom to make his own mistakes, and learn from his own successes and failures. That’s hard for any parent, but when you add a pinch of autism, it’s just that much more difficult. I’m thankful he found a way to let me know what he needs (and if he does not want his free kids meal sundae at Culver’s –well then I do!)

In many ways, Elliott is a wise, old soul. Maybe “old man” was not so far off the mark after all . . .

Reflections from the Red Couch now has its own Facebook page! Check it out, and feel free to “like”!

Random Thoughts

Today is just not my day.  Somehow my email was hacked, and I sent out a virus to every single person in my address book regarding male enhancement products.  Gee, sorry about that friends, family, former neurologist lacking a sense of humor & Governor Dayton.  This discovery came before coffee this morning, which is never a good thing . . .

Worse, (much worse indeed) my Grandma is in the hospital, and I feel like a giant jerk.  The Norman side of our extended family (40+) had our annual holiday gathering in the WI Dells (water park capital of the world) last weekend, and my Cousin Dave’s new baby infected nearly ½ of our group with a nasty flu.  All week, the phone has been ringing with news of a new person puking.  My role within our extended family has evolved into one of mild humor infused with a pinch of cynicism & inappropriateness.  Well, maybe more than a pinch of inappropriateness.  So, when Dave called feeling guilt about said baby’s role in this nastiness, I suggested that even though Grandma had made it to 90 like a champion, that perhaps Dave’s baby (her own great-grandchild) would finally be the one to take her out.  Hey – making Dave feel like crap is my job, and I take that role seriously.  (Remember, I have 2 kids with autism – apple doesn’t fall far – no judgment!)

The fact that Grandma really did require hospitalization shook me, however.  The woman is healthy as a horse, had 7 kids, lived on a farm, never needed Prozac, and is kind of my hero (and a regular reader of this blog, so excuse me while I suck up as best I can), Grandma – love you man!  So, I really didn’t imagine that would ever happen – ever.  Again – today is not my day (nor Grandma’s for that matter). 

In general, I’m struggling with balance.  I’ve wanted to write for a few weeks now, but life has gotten in the way, and in many ways that’s ok.  Holiday break was filled with moments of greatness, and challenges that while not unique, are not so fun.  This being the first year that Elliott did not have therapy going on, nor school, was something I had been thinking about, and even dreading in some ways, for weeks.  Yeah, there I go again sounding really jerky, but I’m being honest.  If I don’t do my job preparing for each segment of the day, plan ahead of time, structure our time, and build in plenty to do, it can be beyond challenging for my buddy E.  Trying to make all that work with someone who needs that much structure & has extremely limited leisure skills, along with 2 other kids who crave downtime is not always easy.  It’s not hard to do here and there, but it’s the constancy of it all that makes it overwhelming if that makes any sense. 

That said, we made the best of it, and to be honest, I would not change it one bit.  Not even the ugly moments – (E took all Tom’s change and deposited it as his own at the bank).  We’ve struggled previously with stealing money from Mom & Dad, along with charging thousands of $ on our credit cards (some credit card customer service people are so not amused by that!), and have come a long way.  E fessed up right away, and had to learn some difficult lessons, but we think they hit home, and that’s what made the ugly stuff worth it. 

The moments of greatness, however, were unexpected and rocked our world.  We all went to the movie “We Bought a Zoo” and actually, for only the 2^nd time ever, everyone did great at the movie!  I mean people sat still, paid attention, didn’t try using the bathroom as an escape 73 times, didn’t yell out repeatedly “when is this going to be done” 10 minutes into the movie, and genuinely enjoyed the plot.  At one point, E leaned over during a sad moment in the movie, with a tear running down his face, and said, “Mom, that hurts me – not hurts my body, but hurts on the inside”.  Well, that sort of made my whole 2011 and then some.  In that short, somewhat awkward phrase, was empathy, proof that he was following a plot line meaning that he was paying attention to the movie, and sharing with another person his feelings.  Each one of these things alone is monumental in the world of autism, but combined, well, it is a 10 second experience that opens a million windows of possibility for Elliott and our family.    It was indeed, a tiny moment of time that I will never forget, and will often try to remember when he wants to talk with me about how cash registers work rather than friends.

And so today, as I struggle with the realization that I am indeed, a big jerk regarding the whole Grandma situation, and that I am sending out hundreds of male enhancement emails,   I will instead choose to remember that little 10 second moment in the movie theater that makes just about anything possible.  It’s all about hope, right? 

Craig’s List Santa

My offspring are still believers. Yes, at 11, 9 & 5, they have not even broached the subject once. For them, the “S” man is still as real as he has ever been, and is watching them like a hawk (Tom & I feel strongly that we must use this as long as we possibly can – after all, we are clearly outnumbered). A few years ago, Tom suggested to our trio that bad behavior causes reindeer to poop in their stockings, while positive behavior (including random acts of kindness towards others) erases the excrement and brings about general good will. This is all well and good until Elliott wants to hold a door for someone, and when they thank him, he promptly asks “did I erase any poop”? Oh the joy of the holidays.

Yes, I’ve taken some heat from my Dad, who has suggested that especially the boys are getting a little old for the Santa gig. While he may be on to something, as I’ve shared with him, I don’t feel like it should be someone’s Mom who tells them the truth – that just seems unnatural to me. While I will be their soft place to land when the truth comes out, I don’t want to be the dream crasher. Besides, I suspect that Henry is on to something, but realizes the truth is not worth exploring because the idea of Santa is way cooler than verifying the truth. He is, in many ways, a wise old soul that way.
Because autism has a way of creating – at least for Elliott – very black & white thinking, we know he is still a believer. Rest assured, when he figures this out, he will not be shy about telling the world what’s up. That said, I’m ok with that. There are so many aspects of a typical childhood that we missed out on with Elliott because of the myriad of challenges he faced – even now, many of those years seem like a fog to me. I can look back at pictures, which are mostly charming and smiley, but our world was anything but charming and smiley. I barely remember anything about Henry’s first year of life, except that our life was a living hell. Even his first Christmas Eve, at 3 months old, was spent in the E.R. because of a nail trimming gone wrong (at least he had a little Santa hat!).

All that said, even though some of this Christmas magic is happening for us a little late, it’s worth it! Everything from decorating the tree to baking to driving around the neighborhood drinking hot cocoa and admiring holiday light displays is so much fun for our offspring, it kind of makes my heart warm & tingly and I remember my own magical Christmas childhood moments. It feels so natural and so normal – and for us, average is pretty awesome, even if for a fleeting moment.
Today I walked to the mailbox to add some mail, and when I opened it, right on top, was a letter addressed to Santa, North Pole, from Elliott Kramer. He used his nicest penmanship, and shared the following “wish list” with Santa:
1. An apple laptop computer
2. A touch screen code door with a lock on it
3. A Dyson vacuum
4. Costco membership card
5. 3 sheets of holiday baubles stamps from the post office
6. Lego white dial chronograph watch
7. 3D movie tickets for the movie “New Year’s Eve” (I’ve never even heard of this movie, is it an “R”?)

I don’t know why, but it just made me tear up, and smile at the same time. His innocence is genuine, and his list is so him. I can’t tell you how many years he’s asked for a security door (the kind with the keypad used for security purposes in office buildings), and while I can still find a hint of humor in many of his choices, you need to understand that he’s come light years. 2 years ago, he asked for $1 million dollars cash and a $748.00 gift card from Oriental Trading Company. We’re moving in the right direction, and for whatever reason, there is a spark of Christmas magic in all of that. It just makes me smile.

Perhaps all this Santa business is on the minds of our crew because Ada had an early visit from the “S” man yesterday. For the past several months, she’s been telling everyone she knows that she is getting a bunk bed, and that it should be delivered in 10 weeks. Everyone but Tom & I knew about her bunk bed – it was apparently being delivered from Apple Valley – and she had big plans for a slumber party once it arrived. Considering her limited conversation skills, this was kind of an awesome topic that brought about a lot of chat, and thus, it’s come up a great deal over the past several weeks.

I’ve been scouring Craig’s List to find something simple for her, and alas, I scored. It’s a family that is moving, and needed to unload it quickly. It’s got some fabric that allows for the top part of the bunk to serve as a fort, and a fun little slide you can take to get from the top to the bottom. While we had grandiose plans of finding a bunk bed, and assembling it Christmas Eve night in her room, that fell apart when Tom went to pick it up yesterday and realized he needed to reassemble it ASAP in order to remember how to rebuild it. We scrambled to make a new plan.

We gathered at the red couch, and shared with the small folk that Daddy had taken a call from Santa, and he had an item that was just too large to fit in his sleigh, and he needed help getting it to Ada a little early. When she saw her new bunk bed hanging out the back of the van, well her expression would have melted even the Grinch’s’ heart! Both boys helped Ada & Dad get it set up, and everyone worked together as best they could. It was awesome in every way, and I can’t help but smile when I look at our newly conversational little girl hanging out in her fort with her brothers and enjoying sibling time together.

Makes me a believer in Santa and the magic of Christmas all over again . . .

The Preschool Pick-up Line

Some days, Prozac is just not enough. Today is one of those days. What I’m going to share with you does not make me proud – as it’s the kind of thing that happens all the time to lots of Moms (especially those of us with kids who have special needs) and 99% of the time I can blow it off like no one’s business. Today is not one of those days.

This “encounter” happened this morning in the preschool pick-up line, and for whatever reason, I can’t shake the ugly feelings no matter how hard I’ve tried. So, I sent my trio off to the Science Museum with Dad, poured myself a margarita from a bottle that was originally opened sometime this summer and is not as fresh as I’d like, spent a few minutes on my red couch deciding whether or not I really wanted to put this down on paper, and now here I am.

Here’s my deal – some Moms are just jerks. Maybe you can envision who I’m talking about – the Moms who are way too concerned with how perfect their kid is, who need to talk about how amazingly bright or advanced he/she may be, what wait-lists the poor kid is on for schools, the crazy amount of classes/lessons/hobbies their poor kid is over-scheduled for, etc. They are in the know about every kid in school, and pump their kids for information that even 8th graders should not care about anymore. Generally, much to my despair, these Moms are way too cute, snappy dressers, and weigh exactly what they should without exercise or effort of any kind. Damn I dislike them – even before ugly things happen.

Full disclosure – I don’t share with everyone that Ada is on the autism spectrum – especially at her preschool. While I have no shame sharing it, it just has not come up naturally in conversation, nor has there been any reason to throw it out there in everyday chat in the kid pick-up line. Frankly, unless there is some reason or need, why? Strangely enough, Ada has a therapist who accompanies her at preschool every day. Ada does not even know that this person is a therapist, as this person has never been to our home, etc. This is something in the therapy world known as a “blind therapist”, because neither Ada nor her classmates know that the person is there for her. I’m fairly certain most of the kids and parents just think it is another teacher in the classroom, and unless Ada needs help with something (which happens less and less) that is how she spends her time. Frankly, it is amazing and wonderful that Ada is in a place where this is as much help as she needs at this point. We’re working hard so that in Kindergarten, it is hopeful she can begin school needing little if any help at all. This is a tremendously different situation than we faced and continue to face with Elliott. But Ada’s a girl, and that’s a whole different animal when it comes to the social scene in school.

I’ve shared this before, but another reason I don’t feel as comfortable chatting about Ada is that I don’t always want to be perceived as the Mom who can only talk about autism. I own that I have a lot of anxiety about that – because even though autism is a big part of my life, it’s not all that I am, and I dislike that at times, I know that’s what I’ve projected to others. I’m self-conscious about that, and often find myself weighing what I should or shouldn’t say – especially since I’m all about spreading awareness, but need to balance that with my own sense of appropriateness. With Elliott, I had fewer options. Wherever we go, people can sense within about a half-second that something is not as it should be. I guess that does not sound very nice, but I don’t mean it in a negative way. In spite of his differences, he is an incredibly confident and outgoing young man. He makes his way in the world because of his differences, and not in spite of them. He’s far from shy, got a killer smile, and likes to hug total strangers. To be frank, he has many fans out there, and even when his attempts make me sweat with discomfort as I struggle with my own social boundaries, I force myself to allow him to make his own way in the world (within reason of course). What he lacks in the area of social filter, he makes up for in tenacity. I’m very proud, and even a tinge envious of this.

(Starting margarita #2 – this may be trouble). Ok, so here I am in the preschool pick-up line this morning about 3 or 4 people behind this parent that I’m less than fond of who happens to be outspoken about just about everything. Keep in mind that because our school district did not have school today, I had both Elliott & Henry along with me. Considering that both boys attended preschool there, and Elliott did Kindergarten there (twice, but who’s counting), they were kind of jazzed about being in the building again. Elliott immediately approached 2 or 3 Moms to tell them that when he grows up, he’s going to become a civil engineer so that he can deal with the irritating traffic light situation in front of the preschool. He also explained to them, in vivid detail, the route that we chose to drive to the preschool from our home, including street names and approximate wait times.

Out of the blue, said Mom starts asking almost every parent in line whether or not their child had fun at her kid’s birthday party, which had apparently happened very recently. It became clear to me very quickly that Ada was likely one of the only (if not the only) kid from class not included, and that icky feeling down deep in my gut began to ache. Believe me; I need to own my insecurities here. I get that you can’t include everyone at every party – though in preschool, we always have. I get that maybe it was random, and had nothing to do with autism – maybe they are just jerks in general. I also get that Ada knows nothing about this, and it will never have to hurt her the way it hurt me in that line this morning. But I can’t help feeling ugliness about it. Not only was it completely inappropriate for her to be talking in front of me to every parent who was invited (she needs to revisit her social filter), but I need to get over my negativity about her for Ada’s sake.
It didn’t help that Elliott was spouting off about a myriad of random discussion topics in his way too loud voice while this was all going on. Because even though 99% of the time, I can roll with the punches, at that moment I just felt sad for how different our family is, and that our differences are going to cause some additional social heart-break for our kids and in turn for me. All day, I’ve just not been able to shake these ugly feelings, and I’m ticked about that too. Lord knows we’ve been through worse – like when Elliott at age 2 barreled into a 90-year-old woman at Lake Harriet, and she nearly ended up in the hospital. Heck, we have a million fun little memories like that one to share. This in the big scheme of things is nothing, but for some reason, I’m just ticked at his creepy Mom.

Why does she get to worry about what schools offer the best gifted and talented programs and I need to be content to cry for joy when we don’t ask someone at Target how old they are? I know – that was completely jerky, and I have no idea how awful or potentially complicated her life is. Everyone has their issues – while autism is what our family struggles with, everyone faces challenges. I swear I have compassion for the struggles we all face. It’s just that today, I need to dislike the way she excluded my baby – whether it was about autism or not.

I never like to stray too far away from realizing that if things had turned out differently, I could easily be like her (true – I’d be tons funnier than her and hopefully not quite as snarky) but I could have been a Mom worried about the things she is worried about instead of appropriate social interactions, eye contact, or special ed. test scores. But I’m not, and some days, that just sucks  Today is one of those days.