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 . . .