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 . . .