Moments of Grace

 

I was going to write a post about all the things in my life that I’m thankful for. You know, sort of like those classroom assignments we’d get while we were growing up, a few years after the handprint turkeys and construction paper pilgrim hats. I had the usual list going – my children, our health, my job, our home – the heavies. My extended family, of course, and my good friends, including my fellow bloggers and wonderful readers, those I know and those I don’t. All of you have enhanced my life in numerous ways, and for that I am very thankful.

My ready-to-post list continued with the people in my life who have been most important in my children’s lives – Neil’s case manager, his teachers, his speech and behavioral therapists, his new wrestling coach, and the Scoutmaster of his troop and all the Scout families who have been so patient and accepting of Neil over the years, even when his behaviors were more difficult. Where would we be without these wonderful people? Where would we be without the doctor who finally, after many anxious weeks of multiple tests and screenings, identified Adam’s medical condition earlier this year? And the surgeon who skillfully removed the offending party? I am so very grateful. Words cannot express my appreciation.

My list extended in a broader, global sense to include my trip to Nepal a few months ago and the beautiful people involved with Knowledge for People and AutismCare Nepal. I am thankful to have had the opportunity to learn from them and work with them, and to have had such an amazing experience that enriched my life. Last, but in no way least, I am thankful for those who selflessly serve our country, who sacrifice time with their loved ones, on Thanksgiving and always. We owe them a huge debt of gratitude.

I had thought about it last night before going to sleep and knew exactly what I wanted to write. I knew what I was thankful for and had the whole post planned. And then something happened this morning. Something happened that made me rethink my Thanksgiving post. In fact, it made me think outside the whole Thanksgiving box. I witnessed a near tragedy, and it shook me.

Since Neil has wrestling practice every day after school and finishes after dark, I drop him off in the morning and pick him up in the evening instead of having him ride his bike. This morning, I pulled up to the main entrance of the school and waited at the stop sign to turn into the driveway. A boy about Neil’s age started walking in the crosswalk in front of us. Across the intersection, a car suddenly began driving through. The driver, a middle-aged man, was headed right for the boy in the crosswalk and didn’t see him. I gasped, frozen. NO! This was not going to happen! Neil and I would not witness a boy get hit by a car! In a fraction of a second, I willed the driver to see the boy, to stop, stop, STOP! At the last possible moment, he slammed on his brakes and missed the boy.

Neil did not seem to grasp the magnitude of what we had seen. In fact, when I asked him, “Did you see that?” he said, “See what?” Then the fact hit me that it could have been him. It could have been my son in the crosswalk. And while that boy was not my son, he’s someone’s son. Someone’s son almost got hit by a car in front of the school today.

But he didn’t. And it made me realize, as I arrived at work this morning and sat in my car crying, that I am most thankful for those moments of grace – when something horrible could have happened, but it didn’t. That all the times over the years when Neil wandered off and was lost that I eventually found him, unharmed. That all the times when he was little and a sound upset him and he bolted into the street or a parking lot, he was unharmed. That the boy who was almost hit by the car this morning wasn’t.

These are all moments of grace – “there for the grace of God go I” –  a divine favor, a gift. A break. All the times when I’ve muttered, half to myself, half upward, “Can’t I ever get a break?” – now I know. These are my breaks. I’ve had them all along. They are all around me, still. And my thankfulness is boundless.

Image credit: Luiz Ferreira 

The More Things Change

Adam, seated next to me in the booth of a Mexican restaurant, says, “I have a joke for you, Neil.”

Neil, seated across from us on the other side of the booth, asks, “What is it?”

“A plane crashes on the border of California and Mexico. Where do you bury the survivors?”

I have heard this one before. And when a visually-oriented person hears it, as opposed to reading it, that person, especially if he happens to be interested in disasters of all kinds, will not hear the word “survivors.” He will hear “plane” and “crashes” and “border of California and Mexico,” and he will hear “bury.” And he will matter-of-factly answer, “They should be buried in the country they are from.”

And Adam smugly delivers the punch line: “You don’t bury survivors.”

If Neil had read it somewhere, had seen it in print, he would have immediately caught the trick. But verbally, of course, it’s lost on him. He has to be reminded that the word “survivors” is part of the equation, and then he understands. He calmly takes it in stride, filing it away for future reference.

Meanwhile, what is not lost on me is the fact that all of this is taking place in a busy restaurant. Not too long ago, going to restaurants was highly problematic. Up until about seven years of age, Neil’s sensory issues were so crippling that he would writhe on the floor, wailing in agony whenever I tried to take him into a restaurant. He couldn’t handle all the people and their respective sounds, the background music over the speaker system, the clanking of dishes, glasses, and silverware, crying babies, whirring fans, lights, and whatever else affected him. God forbid he should need to go to the bathroom with its echo-inducing walls, air hand driers, and loud toilets. God forbid the staff should decide to vacuum around the table right next to ours.

Yet, tonight at the Mexican restaurant, every single one of those things happened. Every one of those things – except Neil writhing and wailing on the floor. That’s right – he was completely fine tonight. When he was around eight or nine years old, things seemed to get a little easier for him (except for the bathrooms and vacuum cleaners), and we could usually experience a successful fifteen minutes in a restaurant. After fifteen minutes or so, his sensory issues would reach a build-up point, and then he just couldn’t take any more. He’d have to crawl under our table (this, at age twelve, did not look okay to staff and other patrons, but hey! That’s what the boy needed to do). At least the writhing and wailing had stopped by that age.

Now, however, blessed Now, he can eat a full meal in a restaurant without any discomfort or distress. Unfortunately, my ASD-parent PTSD is always affecting me, and I cringe at every single sound. The music, the babies, the clanking. When they bring out that damned vacuum cleaner right next to our table (Gah! Why must they do that? Why?! We’re eating, for God’s sake!), I about have a heart attack. But Neil is completely unfazed. No ear plugs. No covering his ears. No diving under the table. He calmly munches on chips and salsa while he talks with his brother about G-force and physics. The old adage about things changing? In our case, they don’t stay the same. And I, for one, am relieved.

Adam continues with his next joke. “Imagine you’re in a box with a pig and a stick. How do you get out of the box?”

Neil briefly contemplates, then answers, “I would hit the pig with the stick until he gets mad enough to break down a side of the box, then I could get out.”

Adam says, “Stop imagining. If you’re imagining that you’re in a box, just stop imagining and then you won’t be in it anymore.”

Neil smiles and files that one away too.

Image credit: Mei Schwein

A Little Boy’s Dream

What kind of shoes are these and what’s the seven-year story behind them?

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Picture a little boy, four years old, with wavy, light brown hair and captivating hazel eyes, who cannot talk. He tries to play with other children by bumping into them and laughing. He doesn’t know how to play, but he tries. He sees children laughing and playing together as a group, so in his mind, he thinks they are bumping into each other, and he believes that this is the way to play. The other children don’t understand. They think that he is being mean, that he is pushing them and laughing at them. All he wants is to join in. And he craves physical contact to meet his proprioceptive needs.

Picture the same little boy, now in second grade. He is talking, although he still exhibits echolalia and mixes up pronouns and word order. This, along with his sensory issues and behavioral challenges, makes it rather difficult to have friends, but he still tries, usually by initiating physical contact. One day, while on a class field trip (accompanied by his one-on-one aide) to the local high school, he visits the Wrestling Room. He is entranced. Though not able to verbalize it yet, he consciously vows that he will attend this high school and be on the wrestling team.

Now picture that same boy at age fifteen. His darker brown hair has developed more pronounced curls, and his eyes are still as captivating. He has learned, through social skills classes and personal experience, that physical contact is best reserved for roughhousing with friends that he’s known for a long time. Then the day comes, two months into his freshman year, when he signs up for the wrestling team. He comes home from school and tells his mother, using perfect sentence structure, that he needs to get a physical done as soon as possible so that he will be allowed to “get on the mats” at practice. He reminds her of how he’s waited seven years to be on the high school wrestling team, and she tells him that she remembers. She remembers that day so long ago when she picked him up from school and his aide told her about the field trip and how much he loved the Wrestling Room. She remembers the various elementary school Christmas Programs that were held at the high school over the years and how, even though her son couldn’t be in the program because of his sensory issues, they would walk by the Wrestling Room and he would tell her “That’s what I am going to do when I go to this high school.” And his mother, not sure if he could ever comprehend the rules of a sport and actually be on a team, but wanting to be supportive, would say in a positive tone, “We’ll see!”

They get the physical done, they buy the wrestling shoes, and the son starts diligently attending practice every day after school. They go to the Parent Night, and the mother approaches the coach at the end of the meeting to introduce herself. She is already impressed by the fact that, during the meeting, when her son asked a question that was a bit self-explanatory, the coach had answered him with genuine respect and patience. So she goes up later and shakes his hand and asks if he is familiar with her son’s IEP for his autism. And the coach assures her that, yes, he has spoken with her son’s case manager and is aware of his challenges. Then he tells her with such sincerity how well her son is doing. And the mother fights a lump in her throat as she tells the coach, “He’s been wanting to do this for a long time,” and thanks him, very much.

Now picture the little boy’s mother picking him up from wrestling practice the next evening. She pulls into the parking lot and sees his lean frame striding toward the car, wrestling shoes in hand. It strikes her that her son is on a sports team for the first time ever. And now she is picking him up from practice, just like all the other parents do with their sons. She sees a huge smile on her son’s face as he nears the car. The lump returns and her eyes sparkle with tears. He has followed his dream and achieved his goal. He is on the high school wrestling team, and he loves it.

He gets in the car and excitedly tells his mother about the techniques he is learning and how he’s already pinned two people at practice! The mother, hoping that the darkness is hiding her watery eyes, tells him how proud she is of him. She asks him if wrestling is everything he thought it would be. “Well,” he says, “I didn’t know we would have to learn tactics. But I like learning by doing.” She asks him what his favorite part is about wrestling. “That I get to meet new friends. And they understand me.” The mother, hoping that her voice isn’t shaking too much, tells him how great that is. And how glad she is to hear it. All those years ago, he knew exactly what he needed.

Metaphor

The Scene: Teenage boy’s bedroom. The occupant has autism and, although he eventually learned to talk, he is characteristically literal-minded and often has difficulty understanding various figures of speech. Those close to him have learned to take what he says at face value and proceed accordingly. The floor of the bedroom is piled high with dirty clothes, papers, trash, food wrappers, Lego and Bionicle pieces, DVDs, books, and magazines. The boy’s mother, astounded that even with the weekly room-cleaning sessions the mess still builds up so quickly, stands in the doorway with her hands on her hips. She recalls previous attempts and avoidance techniques and congratulates herself that she has at least implemented the mandatory weekly sessions prior to allowance disbursement and movie time. The mess is nowhere near as bad as it used to get, and for that she is relieved. She steps inside the room and gives suggestions for a plan of attack, pointing at the largest pile and urging her son to first put away the clothes, and that will make the pile seem a lot smaller. The son gestures wildly at the pile.

Teenage son:  What a load of crap!

Mother (matter-of-factly):  Well, if it’s crap, let’s throw it away then.

Teenage son (aghast):  It’s not all crap! It’s a metaphor! You can’t take it literally!

 

Image credit: Francisco Navarro  

Different Milestones

Tonight was the monthly Southern Oregon Autism Support Group meeting that I facilitate. We had a low turn-out, probably due to illness, but it was one of the best meetings we’ve ever had. For one thing, two new members attended, so that was great. For another thing, they were the only two members who attended. And as much as I love when we have a big turn-out, when only three people are present, you can really talk.

Since one of them was new to the area and the other one was new to the diagnosis, we started off by talking about local resources. It’s a short list for our area, unfortunately, but I think I gave them a few good leads. We moved on to listing various topics of discussion that we can focus on for future meetings, topics that would be most helpful to everyone (since our group consists of parents of preschoolers to adults). I want this support group to be as beneficial as possible. And that led me to mention one of the topics that I’d like to feature at a future meeting – the emotional issues we face as ASD parents. Usually that area is relegated to the professionals. But what if you can’t afford a therapist or don’t have the time to see one regularly? And if the therapist doesn’t have a child on the spectrum, how are you going to feel that total support and understanding that you feel when you’re talking with other ASD parents?

One of the new members, a mother of a 24-year-old son with Asperger’s, opened up and talked about how hard it is receiving the wedding invitations and college graduation announcements of her friends’ children. How difficult it is when your child doesn’t meet the typical milestones. And I knew – oh, how I knew the emotions she described. It’s not that our children have disappointed us – it’s not that at all. It’s that we wish things didn’t have to be so hard for them, and for us. It’s that we fear the future. For some of us, it starts with the not-pointing-at-things-to-show-them-to-us. Then there’s the not-talking. For others, it’s the not-potty-training or not-making-eye-contact. Or all of the above. And plenty more.

But then, while talking, we realized that our kids have different milestones, and that’s okay. Because whether or not they ever meet those typical milestones, we celebrate the ones they do meet. Like, in Neil’s case, not shrieking in a public restroom – that was huge for me. Being mainstreamed in a regular classroom (with full-time one-on-one aides, but still – huge). Going to the grocery store without distress – anywhere, really. Those are some of my milestones. And only those close to us and other ASD parents can really get how huge those milestones are.

Take for example, when I was at work yesterday. The boys were home because of Veterans Day, but Neil needed to go to his school for wrestling practice (participation in a team sport – huge!) for two hours. Since he’s been successful with riding his bike to and from school every day, I took a major leap of faith and thought that he could handle riding there and then home afterward. I told him he had to call me as soon as he got home to let me know. We calculated that he would be home by 10:30 and would call as soon as he put his bike away. Adam would be home to let him in.

So I’m at work and 10:30 rolls around. Of course, I’ve been anxious pretty much the whole morning. But the phone rings right on time (big!), and it’s him. However, from the background noise, I can tell that he’s not at home. Semi-panic, or pre-panic, sets in. “Where are you?” I ask. He tells me that he’s still at the school, that he was mistaken about the time practice started, which was an hour later than he’d thought, so he wouldn’t be home for another hour. So, even though his instructions had been to call me when he got home, he realized that he should call me at 10:30 anyway to let me know that the situation had changed. He didn’t say that, but that’s what happened. And I about fell out of my chair in shock.

I thanked him for being so responsible. I could barely get the words out. Dumbstruck, I turned to my co-worker to try to share the moment with her. Of course, she didn’t get it at all. What’s the big deal about a 15-year-old doing that? I tried to turn it into a teachable moment by describing my son’s challenges and how autism affects him. Not a flicker of understanding.

But tonight at the meeting? Complete empathy. They totally got why that was huge without me explaining it. I felt validated. I felt understood. I didn’t feel alone. And that, my friends, is the whole reason for a support group.

We have different milestones for our kids, but we do have them. And it’s so affirming to know people who understand those milestones, and celebrate them with us. My co-worker has known me for five years and didn’t understand. Those two women had known me for one hour, and they were celebrating with me. Best. Meeting. Ever. And that’s a milestone too.

Image credit: Stephanie Hofschlaeger