School started this week. Like many parents on the Spectrum, anxiety reigned supreme over our household with one notable exception: Mike. We have known since June that Mike was accepted into a mainstreamed middle school class for Special Needs kids. We were very excited, including Mike, who has never been particularly excited about any prospect remotely associated with school. We mentioned it fairly often over the summer to ease the typical end-of-summer/back-to-school anxiety, but found he had none. On Tuesday morning he woke up on time; early, actually and went about his ‘morning routine’.
My wife and I however were a different story; I don’t think either of us slept particularly well and did not enjoy losing extra sleep in the morning. We had already decided the night before to follow the bus as we typically did whenever a new year started, you know ‘just to be sure’. So after I got him on the bus, I inconspicuously ‘tailed’ the bus from a distance as it wound along on its route. With a terrible downpour, it didn’t take long (2 pick ups) for the bus to lose me. So I decided to wait at the school for it to arrive, and marked the occasion on Twitter:
- Ed Eustaquio (@1andOnlyJustEd)
9/4/12 7:54 AM
Mike’s first day of school #newschoolanxiety #fingerscrossed #autism
As I spied Mike getting off his bus, I remained watchful for any signs of agitation, anxiety and withdrawal, and exhaled when I saw none. I was actually really relieved when his teacher came out to the bus to say hello to them before the students exited the bus. Thank goodness for good teachers!
- Ed Eustaquio (@1andOnlyJustEd)
9/4/12 8:11 AM
Mike just got off the bus and is high fiving the teachers #newschoolanxiety #autism #dadstalksthebus
As many parents know, routine and transitioning are central issues for many Autistics; deviating from rituals often brings about anxiety, meltdowns, or other undesirable behavior. So let’s look at the different things that deviated from Mike’s previous routine:
- Waking up 45 minutes earlier
- Meeting a new bus driver and attendant
- A new bus route
- A new set of peers/classmates on the bus
- A new school building
- A new teacher (whom he has only met once before) and classroom aides
- A new class routine
- Mainstreaming into art, music, gym and
- Lunch in the lunchroom with everyone else
Surprisingly (to me anyway), he overcame (or was able to cope with) each with remarkable poise. After all this, when asked how his day was, he responds with a simple “Great!” We were glad to find out he met a friend who he described as “the guy from music”, AKA Mr. Hansen.
So, is he getting better at this? I would say so. Are we? Not even close. I guess we have a lot to learn. I would like to credit our diligence and preparedness, as well as the lessons he’s learned from his teachers, counselors and social situations he’s been placed in. Or we might just be lucky. Who knows?
All I know is that we are thankful that he is making progress. Not quite THERE, by any stretch of the imagination, but certainly at least a step closer.
That brings me to today’s post, entitled “Missing Matthew” by Laura Shumaker. It reminded me of the fragility and complicated dynamics of every family touched by Autism, and made me that much more thankful for my wife and sons, and the support we give each other. -Ed
My son Andy skipped ahead of me with his fresh haircut and new Quiksilver T-shirt. He tumbled into a cluster of exuberant but nervous freshmen outside the high-school gym as upperclassmen clapped and chanted, music blaring.
It was orientation day our local high school.
When it was time to get to the business of filling out forms and taking pictures for student body cards, I felt a tug on my sleeve. It was the mother of one of Andy’s friends, a woman who always knew more about everything than the average person.
“I hear you sent Matthew away to school,” she said coldly.
“Yeah, it’s hard, but I think it will be good for him in the long run.”
“Well, I think it’s sad,” she said, then turned and walked away.
I raced around and paid for books and registration fees with Andy running behind me, knowing I was distressed. I kept my chin to my chest, eyes down. Only a few of my good friends could tell that something was wrong as tears stained my beet-red face and light blue T-shirt.
“I’m fine,” I lied to Andy with my best fake smile. “Go ahead and talk to your friends. I’ll meet you in the car.”
I ran to the car, the goofy plastic smile still planted on my face, fell in, and sobbed for what felt like hours. It was the first time I had cried since leaving my oldest son Matthew, who has autism, at Camphill Special School near Philadelphia, three thousand miles away from our Northern California home, two days before. Andy was right behind me and sat next to me as I wept, patting my back lightly and giving me sips from his water bottle.
“You did the right thing, Mom,” he said. “That lady wouldn’t have said that if she knew what you’ve been through.”
We had been through a lot as a family, though the last year had been particularly difficult. Matthew is what many would consider high-functioning, but his quirky and impulsive behavior that had been manageable in earlier years had amplified dangerously with the onslaught of adolescence.
There were rages, slamming doors and police visits prompted by Matthew’s knack for approaching strangers, mostly prepubescent girls and their mothers, with inappropriate questions.
How old are you? Do you think I’m nice? Can I touch your hair?
A series of disturbing close calls was topped off with a surprise letter from an attorney. Apparently, Matthew had collided with his client, a young boy, while riding his bike.
“Matthew? Were you in a bicycle accident? Was anyone hurt?”
“Probably a boy. Who told you?”
My husband and I came to the heartbreaking conclusion that Matthew was no longer safe in the community where he had grown up, and that his impulsive actions were putting others in peril. He needed more supervision, more than our family or our school district could provide.
I wasn’t prepared for the way I felt when Peter and I returned after taking Matthew to Pennsylvania. I had assumed I could enjoy the luxury of time alone at home with Matthew well taken care of and my two younger sons at school. I imagined that I’d reconnect with friends over lunch and at the gym. The strain that had aged my face would fall away, and I would look and feel rested and serene.
Instead, I felt scattered and aimless. The toll of the anxious summer had drained my energy and confidence, and my identity felt battered. I had been the Matthew expert for 15 years. I had known exactly how to hold him when he fusses as a baby, and I knew the story behind each scar and broken bone. I was the only one who knew how to calm him during an adolescent, autistic meltdown. Now, I felt stripped of my duties.
It seemed unnatural, even selfish, to fill the time Matthew’s absence granted me with luxurious activities such as seeing friends for lunch, relaxing in the garden, or even doing a load of laundry without interruption. Just as I was beginning to feel a little better, a friend called.
“Has Matthew left yet? Good! You must be so relieved! He doesn’t come home till Thanksgiving? Thank God!” she said.
Her insensitivity made me crazy angry, and after hanging up on her, I went into a housecleaning frenzy until Andy reminded me it was time to leave for freshmen orientation.
After Andy and I returned from the scene of my public breakdown, the phone was ringing again. I hoped it wasn’t my clueless friend calling back.
“Hello, Laura? This is Andrea at Camphill.” Andrea was Matthew’s housemother. I panicked.
“Is everything OK? Did something happen?” I asked.
“Oh no,” she laughed. “Things are going well here. I am really enjoying Matthew, but I have some questions about him, and I hope you can help me.”
My heart jumped. Yes! I can help! What do you need to know?
“What are his favorite foods,” she asked. “Does he like music? How do you reward him for good behavior? He has been teasing his roommate relentlessly.”
That’s a good sign. At least I know he’s feeling like himself.
“Any ideas? The rash that was on his hands seems to have cleared up since you left, and he is sleeping well. We are enjoying him so much! Andrea told me that Matthew liked to watch her son, Joe, who was eighteen, work in the greenhouse and that they got along well.”
I felt overwhelmed with joy and relief. Matthew was still far away, but he was safe, he was happy and he was appreciated.
We talked for almost a half hour, mother to mother, and I told her to call me any time. It occurred to me that I had felt I was a failure as a mother because I couldn’t fix Matthew. But now Andrea was acknowledging that Matthew was a puzzle, and that we needed each other to figure him out and help him grow.
“May I say hello to Matthew?”
“He’s right here.”
“Hi, Mom. I’m very busy right now. Joe and I are doing something very important.”
“I know. I just wanted to hear your voice,” I said, choking up. “I miss you, Matthew, and I love you so much.”
I could tell he was smiling.
- Warning: Item In The Mirror Is Closer Than You Think (beyondautismawareness.wordpress.com)