Sifting Through the Middle Pieces

“I’ll take a margarita. On the rocks. Make it STRONG.”

I could see in the young server’s eyes that he knew it had been one of those days…such that he should probably fetch my beverage quickly. And thankfully, he did. After a nice cold, salty swig I could finally feel my body resist the tension that had been holding me captive for days. I was lucky enough to get an evening out with a wonderful girlfriend for “’jitas and ‘ritas”…my favorite. It couldn’t have come on a better day.

The entire drive to the restaurant I mulled over the previous three day’s interaction with Ben’s teacher. I initially sent a request for more information on special services right after our last appointment with the psychiatrist but was advised the special education teacher for his school had just left the country and wouldn’t be back for two weeks. This was week two and I was feeling impatient. After sending a reminder email to his teacher I received the following in return:

Aspergers is so wide. Yes, I see tendencies that would fall into that…but it is hard to tell if it is that or ODD. I would like to share what I am seeing at school. I PROMISE you that I will send you another email tonight explaining in more detail some positives and areas of improvement.

I was confused.  But I waited. 

I couldn't stop the debate in my own head.  This is NOT Oppositional Defiance Disorder. Can't be. I stewed. And I cried. And I stewed some more. Just when I felt like we had our ducks in a row and everyone was on the same page, seeing the same things…ODD is thrown back in the ring. I thought we tossed that one out a long time ago.

Damn it.

Shortly thereafter his teacher shared her observations...

This is what I am seeing:
• Above grade level ability, but doesn’t always show it
• Prefers to do tasks independently (without partners)
• Hard time working and understanding peers
• Hard to get him to smile, show emotions
• Plays solo during most recess or side by side
• He lends towards one classmate
• Hard time understanding peers and reactions impulsive at times
• Relates to adults and interprets their humor

I suppose I struggled to find the “positives and areas of improvement”. I did see the above grade-level aptitude…which of course is fantastic. However, what my heart read was “your child spends most of his day alone.” “Your child has no friends.”

He’s alone. He plays by himself on the playground. He reads alone. He writes alone. None of which came as a surprise to me. Nothing I wasn’t already suspecting to find. But…do you ever really get used to reading those words? Truly. If any of you have gone through this, please tell me. Because so far I’ve not been able to merely imagine his reality at school without breaking into tears. When you send your child to school at this age you hope he’s enjoying himself. You picture him in a circle of friends giggling and playing on the playground. You imagine him munching among classmates, chattering about their favorite silly cartoon at the lunch table. I didn’t picture him sitting in silence at lunch. I didn’t picture him playing side by side with another child at recess but not engaging. I didn’t picture him spending his classroom stations and group learning time in anxious misery.

These were the images scrolling on repeat through my mind as I made my way to dinner that night. Whether his teacher realized it or not, she confirmed our thoughts and IS on the same page as us. Which is great. But I couldn’t help reflecting back on my recent post of the beautiful poem titled Welcome to Holland by Emily Perl Kingsley. My thoughts at that exact moment?

Screw Holland AND their wooden shoes.

If Holland means my son feels alone all damn day, I don’t want to be there. I don’t care HOW many tulips there are. For the life of me, I could not control the burning waterfall of emotion pouring through my eyes that day. One thought after another took me back to tears and quickly. Being able to sit and talk through this with my friend was such a blessing. She is a godparent to a boy who was diagnosed with Autism in early childhood. He was nonverbal and has gone through myriad therapies to be where he is right now. She was right there with him through it all. And it helped me to hear her talk about it. Her love of margaritas, listening ear, strong shoulder, and helpful advice guided me toward putting Ben’s struggle in perspective. I successfully made my way home that night without any additional tears. The next day we were to meet with Ben’s teacher and I was determined we would get somewhere for him.

The tension was palpable between the Gentleman and I as we waited outside of her classroom for her to wave us in. I could see it in her face. I knew what she was going to say. (She finally sees him.) My shoulders instantly exhaled. My ears were open. She went over the academics first…our son is in kindergarten, reading AND comprehending at an early 2nd grade level. Amazing. His math has improved exponentially. He’s certainly above grade-level in all academic fronts. I could feel the hesitation in her throat as she dropped her eyes and suggested his progress socially was not as remarkable. (Go on, sweetheart…it’s okay. We already know.) At this point, I almost felt bad for her. She had admittedly done some thinking, analyzing, researching in recent days and had concluded we were on the right path. It was as though it broke her heart to have to tell us what we suspected was going on in her classroom all along. It broke mine too. Again.

She hesitated to use the word…Asperger’s. She insinuated but could hardly get it out. I had to nod her along…and reassure her that the tears cascading down my face were not because my son may soon don a new label. I’ve come to terms with the fact that he’s likely on the” Spectrum”. (Our lovely new favorite household word.) Rather, I weep because we were right. Sometimes I wish we weren’t. Despite my frustration with previous suggestions of ODD, a small part of me wanted someone to say “this really is just ADHD/ODD and he’ll grow out of it”. If that were the case, he might struggle to sit still or focus on school work but he would eventually socialize and make friends. Right? No. Not right.

I’ve gone back and forth and back again. The last week or two has been an endless wave of laughs over tears. Smiles and heartache. THIS has been my roller coaster in recent days:

• His ability/willingness to interact with classmates has declined significantly since the beginning of the year, leading to further isolation.
• Many of the teachers check in on him through the day and love him dearly. They refer to him amongst themselves as their “little old man”.
• He has increasing anxiety when being prompted to work with classmates on an assignment to the extent he melts down and can’t finish his work.
• The teacher has already successfully introduced him to some sensory tools and toys when his triggers raise their ugly heads and allows him to walk the hallway when he knows he needs to separate.
• Unfortunately we’re not going to get an assessment until September at the earliest.
• We found some great items to alleviate his sensory issues: no-slip socks, a bean bag chair, and hopefully an affordable weighted blanket.
• His siblings are struggling and understandably so. Classmates are approaching my daughter asking what is wrong with Ben, suggesting he’s weird or a freak. They feel slighted and as though Ben is getting away with behaviors he shouldn’t.
• His vocabulary is expanding daily to the extent I feel like a bumbling fool around him at times…his eye-rolls and heavy sighs suggest he agrees. (Sorry mommy is so inarticulate, sweet pea.)
• He is fascinating when fixated on a character or movie. For years it was Darth Vader. Anything and everything was subject to becoming part of a Vader costume. For now, it’s Avatar. He recently drew, colored and cut out an arrow to tape to his forehead as well as a paper collar to wear around his neck.

You can’t NOT smile at this boy. Even when he doesn’t smile back. Which is often. But I’m learning to be okay with that. I'm continuing to work this puzzle...now that we have the corners, I'm sifting through the middle pieces.  I’m working to distinguish the difference between Ben being lonely and being alone. I know now that those are two different things. I’m beginning to understand that for him, being alone is decompressing. It’s necessary for him…often.

Tough for a momma who struggles to tolerate the sound of her own thoughts and breath to understand.