Trust

Having a special needs child growing up in my home has taught me more about trust than any other element of my life. Especially with my particular child having such an independent spirit and wanting to do things on his own. The problem is that he does not always have the coping tools and social understanding necessary to navigate many situations he could encounter. And so, as he has gotten older and has started wanting to go places on his own, I have learned that lecturing him on safety issues and wringing my hands while he’s gone are not the best ways to cope with the experience.

Of course, all good parents in general are concerned about their children’s safety and well-being when they’re out doing something on their own. I know how it is with a non-autistic child because I have one. I know that even though I have just as much concern for his welfare, the worry is mitigated. He can handle himself far better in situations where other people are involved, which is almost any situation when someone’s away from home. I don’t worry about him causing problems, or about his behavior escalating. I don’t worry about him reacting violently to insects flying near him. I don’t worry about someone tricking him into doing something unsafe or unlawful. And I’m just as relieved when he gets home safely, but while he’s gone, the worry seems more manageable.

For two years now, my autistic teen has been asking me to let him ride his bike to the local grocery store alone. And for many reasons, I kept putting it off. I just didn’t feel that he was ready. Now, since he recently started riding his bike to and from school every day and has demonstrated that he can use a cell phone properly, I can no longer justify not letting him ride to the store, which is just a little farther away than the school.  One afternoon last week, he asked me to let him ride his bike to the store. I put it off, telling him he had to do his chores first. He did them in record time and asked me again, assuring me that he’d be careful. Out of stalling material, I literally wrung my hands and began breathing rapidly, like the beginnings of a panic attack. Neil noticed.

“What’s wrong?” he asked.

I hemmed and hawed. Finally, I said it. “I just wish you didn’t want to do this, Neil. It worries me.”

He paused, and then he made eye contact and said, in his flat but beautiful voice, “Mom, sometimes you just have to trust me.”

I almost gasped. A lump quickly formed in my throat. It was one of those rare lucid moments when he says something so simple, yet so profound. Somehow, he knew exactly what to say. “You’re right,” I conceded. “I think you’re ready to do this.”

“I am,” he said in the same resolute tone.

We then did a quick “verbal social story,” since these days he rarely needs them to be written. I verbally walked him through the route he would ride, told him where to lock up his bike, discussed what he would do in the store, and suggested that he not stop to talk to anyone along the way. He could briefly answer a question if someone asked, but then come straight home. We figured out how much time he would need to get there, get his Silly Putty, and come back. Then he left, and I watched him out the window as he rode away. I visualized a herd of angels surrounding him.

While he was gone, I took his advice. I worked at my desk and just trusted. I trusted that he could do this, trusted that he would be all right. And to my surprise, I actually believed it. I did so well that right about the time I thought to check the time, I heard him rattle the side gate to indicate that he was home, putting his bike away. My eyes immediately welled up and I patted them dry as I rose from my desk. Neil strode into the house and I went to greet him.

“I did it, Mom,” he said calmly, with a hint of pride. “See? I told you I would be fine.”

“You did and you are,” I said, putting my arm around his tall, warm frame. “I’m really proud of you.”

“Thanks for letting me go.”

I tried not to get misty-eyed again. “You’re welcome, honey,” I said.  How did he know that that’s the hardest part of trusting – the letting go? That, as I discovered that afternoon, it’s also the most rewarding?

Sibling Needs

Attention is not evenly distributed when you’re a special needs parent. When you have more than one child, and especially when you have less than two parents, things tend to get very lopsided. I still haven’t figured out how to fix that. “You always pay more attention to him than me.”

Guilty as charged.

Even when I had two kids with IEPs, one’s needs were more demanding than the other’s. One child needed home visits as part of his Early Intervention plan; the other did not. One child needed constant supervision; the other did not. One child needed to be homeschooled; the other did not. The list goes on. And you can’t expect the child with fewer needs to be understanding. After all, that child is just as much your child as the one with greater needs.

So you try to do special things for and with the child who feels like he’s not as important. You tell him that he is just as important as the one who requires so much more of your time and attention. You write posts about him on your blog and let him read them. And speaking of the blog, whenever you’re working on it in your office and he comes in for some reason, you always minimize the screen out of sensitivity for his feelings, so that it doesn’t seem to him that you’re always writing about his brother. Even though over 90% of the time, you are.

And when he comes into the kitchen the night that you are taking a picture of the photo album, open to a spread of his brother as a baby, and he asks what you’re doing and you tell him that you’re working on an idea for a blog post, it doesn’t surprise you that he just says “Oh” in an unimpressed, disappointed tone and walks out.

And it reminds you of how damned lopsided it’s always been, and that for every post you write about his brother, you want to write one about how proud you are of him, the one with fewer needs. And not because he has fewer needs, of course, but because he is so very important to you, and you’re so sorry that it doesn’t always appear that way. And you want to tell him that you look at his baby pictures just as much, and that they are just as meaningful to you, just as beautiful. Just as special.

Even though he’s wearing his brother’s shirt 😉

Needs

I’m sure we’ve all done it at some point. We look through the photo albums, gaze at the images of our little ones and sit there, transfixed, in memory. We wonder – that thing he’s doing with clenching his fists – did that somehow point to autism? How he used to put his head back and say ‘aaahhh’ repetitively? The way he did the ‘5-point crawl,’ with his forehead on the floor? We just thought it was cute at the time, endearing. But he laughed! He smiled!

Of course he did, I remind myself. He still does. He was a happy kid then and he’s still, for the most part, a happy kid. School, high school, so far seems to be going well. Well in the sense that he’s getting where he’s supposed to be safely and on time, he’s not causing behavioral disturbances (to my knowledge), he’s not being bullied, and his new case manager is already working to meet his individual needs. Alas, his needs – that’s where the issues have come up.

When we had our meeting in the spring, and Neil made that comment about H.G. Wells and Jules Verne books, the special education coordinator had asked if weekly check-in meetings with him “would be fine.” She seemed to believe that because he is intelligent enough to read those books, he has fewer needs. I diplomatically explained that Neil would need daily check-in meetings, that one of his areas of deficit is executive function. Last week, at the end of the first two weeks of school, his case manager emailed to gently suggest that she sensed that Neil might need two daily check-in meetings, as well as aides in all classes. Oh, blessed email! Blessed case manager! I wanted to hug her through the Internet ether, even though it pained me to admit, readily, that she was right. He needs even more assistance than I had thought he would.

At his IEP meeting the next day, which Neil attended, things went perfectly. I think it was one of the best IEP meetings ever. Neil presented himself exactly how he needed to – instinctively, it would seem. There are times when he lets his best efforts propel him through a situation, but this was not necessarily one of those times. He answered questions, but he allowed himself to be himself – he spoke in his low, halting voice, with a lot of pauses and ‘eh’ and ‘hmm’ between words. He took extra time before answering, and he did not make eye contact. I know that at this point in his life, Neil has the ability to communicate ‘better’ than this when he feels the need to. But the way that he communicated at that meeting was exactly how he needed to in order to communicate his needs. To show them that even though he is now ‘high-functioning,’ he has needs that must be met in order for him to function as well as he can.

And this school, which is in the same district as the terrible middle school that did not meet his needs, this school is going to meet his needs. They have already rearranged his schedule so that he can have two study periods a day with his case manager (love her). Not only that, they still allowed him to keep his electives and the same teachers for his academic classes, minimizing how much change he has to assimilate. In addition to this impressive scheduling feat, they have also assigned him full-time aides in all of his academic classes and a student aide in his electives. The really amazing thing is that I didn’t even have to ask for the aides.

It is somehow hard for me to go from not having any of Neil’s educational needs met and fighting  – to having most of his needs met and not having to fight. I just can’t believe it. I’m stunned. I mean, of course I’m relieved and happy, but I don’t feel secure in it yet, which is sad. After being on the defensive for so long, it’s hard to realize I don’t have to be that way now.

And it’s equally hard to let go of the questioning that goes along with the old family photo albums. The searching for signs, the wondering why, and how. The pain of seeing the birthdays without words. It’s all part of the experience of parenting a child with autism. But after a while, as I leafed through the albums, I noted that many of the pages were tattered, little rips here and there, some smudges. At first I was disappointed, but then I realized that those perceived defects were signs of enjoyment and appreciation. Our photo albums have been looked through a lot, and not just by me. My sons look at the photos and see the smiles, the good times, the birthday presents, the people who love them. They don’t dwell on their development or anyone’s diagnosis. They just enjoy the pictures, and, I hope, their memories.

I need to learn how to do that. And I also need to let go of the defensive parenting and not be skeptical of the long-awaited and hard-won positive educational setting. Oh, blessed school! My son has greater needs than we thought, but those needs are being acknowledged and met, and I don’t have to fight! Halleluiah!

My Estate

My friends are my estate.  – Emily Dickinson

Where would we be without our friends? I know that I would certainly be in a far less positive state of mind without mine, at any point in my life. Everything – from walking to school in fourth grade to attending high school dances to needing someone to help me move or crying about my divorce – would have been so much harder without them. Nor would the enjoyable things have been as much fun. Upon my return from our recent mini-trip, I realized that forging that connection was the point of the entire weekend.

We started off by visiting Adam’s best friend since first grade. He had moved out of our area in the spring and now lives on the central coast, almost four hours away. We drove to their home on Friday night, and the boys had a great time playing video games and goofing off. I enjoyed seeing his friend’s mom, with whom I have also become friends. I love the fact that among the many benefits of having children are the new friends we meet because of them. I probably would never have met her if Adam hadn’t become friends with her son, and I enjoy her company and talking about our lives while our kids get to roll down huge sand dunes and make up for lost time. It doesn’t surprise me to note the similarities between the parents of my children’s friends and me.

The next morning, Neil and I left Adam at his friend’s house and continued up the gorgeous coast. We met up with Pixie and her husband at the Oregon Coast Aquarium and enjoyed looking at all the marine exhibits, including the shark tunnel. Neil communicated with a sea otter. The Pixie parents found souvenirs that were perfect for each of their children back home. Then we caravanned up to the house that they had rented in Rockaway Beach, gorged ourselves on savory Mexican food for dinner, built a bonfire on the beach, hot-tubbed, and talked until we nearly passed out. Pixie and her husband are yet another example of friends I have met because of my children. If Neil had not had autism, I would not have started blogging (at least not about autism), and then I would have missed a friendship with two amazing people who know what it’s like to have to fight for your children, who experience the same emotions and triumphs and fears, and who share many of the same priorities and dreams. They are warm, witty, and genuine, and I am so happy to have spent time with them. They may live far away, and they may be among the newest of my friends, but I value my connection with them immensely.

Sunday morning, Neil and I drove a little further up the coast and had brunch with a friend I’ve had for 28 years. We went to elementary and junior high school together in southern California, and we’ve kept in touch through high school, college, and beyond. Though in some ways our lives are different, I think it’s no small coincidence that we both ended up making Oregon our home (even though at opposite ends of the state)! We shared a lovely brunch of homemade popovers with homemade peach jam, talked about our families, looked at the photo album of my Nepal trip, and commented that we need to find a way to see each other more often!

After that, Neil and I made our way back down the coast and picked up Adam, and then we jogged back to the middle of the state to stop in and see my sister and brother-in-law and my five-month-old nephew. He is the smiliest, cutest little bug ever! My brother and sister-in-law also happened to be visiting that day, up from LA. It was such a wonderful, impromptu little reunion! We took turns holding the newest member of the family, feasted on a lovely pasta dish with homemade pesto, and sampled my sister’s homebrewed beer. We laughed and reminisced. We communed. All of us enjoy each other’s company so much. I realized that my siblings – and their spouses – are not only family, they are among my cherished friends.

And so I wonder again, where would I be without them in my life? Where would any of us be? As Emily put it, my friends are my estate. And there is so much room in the human heart. More than we could ever imagine.

with Pixie at Cannon Beach – photography by Neil!

With My Eyes Open

How many times have you heard “They grow so fast”? In my almost fifteen years of being a parent, I’ve heard it a lot. I’m sure most of us have. And all the times I heard it I would smile and nod; I wanted to seem wistful, like other parents. But inside I was thinking that it didn’t seem fast to me.

Looking back, I always wanted to get through my children’s various stages. When they were babies, I couldn’t wait for them to sit up, become mobile. I figured they would be happier when they could do those things. I figured they wouldn’t cry for hours on end. I figured I could get some sleep then. I figured things would be a little easier. Then I couldn’t wait for them to start talking. I figured they wouldn’t get so frustrated. I figured they would stop screaming. Of course, I had to wait many years for that (both the start of the talking and the end of the screaming).

Then there was all of the “extra” stuff. Two sets of IEP meetings, specialist doctor appointments, tests, and therapy sessions. I wanted to get through all of that, too. I was so busy trying to get through everything I perceived as stressful that I developed tunnel vision. And while tunnel vision is great for finishing college or being apart from loved ones for a long time, it’s not the best way to be a parent – whether you believe they grow fast or not.

And now my younger son is 13, in middle school. The older one, almost 15, just started high school. I catch myself thinking “if he can make it through this first year, he’ll be okay,” or “as soon as he’s finished with middle school, things will be easier.” But what about the time in between? Why do I still want to get through it? Some of it is still stressful, yes, but not all of it. And sometimes when I least expect it.

Take, for example, my son’s appointment with his psychiatrist today. I rushed home from work, picked him up, and rushed to the doctor’s office. On the way, I realized that I had forgotten the book I wanted to bring to read in the waiting room. Then I started thinking about what the blazes I would make for dinner, wondering whether the pharmacy would still be open after the appointment, and hoping that the DVDs that were due today were all in the cases that I had tossed on the back seat of the car. We arrived barely on time, signed in, and sat down to fill out the half-page form that must be filled out for all appointments. It requires a few checkmarks and about six written words. I have started having my son do it so that he learns these things. This is the third time I have instructed him to do it, and for the third time, he balks.  “Why do I have to do it?” he demands.  “I don’t like writing,” he growls, and then, when he is almost finished, he fumes, “Just because it says ‘signature’ doesn’t mean it has to be in cursive!” “Why are you being so argumentative?” I ask, trying not to smirk. “I’m not being argumentative!” he retorts. And then I start to laugh. I try to hide it, try to turn it into a cough, but he calls me on it. “You did that because you’re laughing,” he says in a low voice.

After assuring him that I’m not laughing at him, I try to explain the concept of stress release, that sometimes I just start laughing when something’s not really that funny. What I feel like telling him, but can’t, is that I realize I’m also laughing in relief. I look at my beautiful, argumentative son and it hits me. He’s talking now. He’s not screaming. He’s not bolting away or writhing on the floor in sensory overload. All this time that I’d been trying to get through all of that, I never realized that I did get through it. Yes, more issues have come up. Different sources of stress. Just because he started talking and stopped screaming doesn’t mean that all of my stress is gone. But that stress is gone. The stress of dealing with a bolting, screaming, nonverbal child is now gone. We didn’t get here by magic, but still, we finally got here. For years I didn’t know if we could. And I am laughing, wondering why I hadn’t stopped to realize it before.

I need to turn off the tunnel vision, open my eyes, and look around at what’s happening now. I have a few years left with my children before they become adults. And even though at least one of them will still be home with me for an indefinite amount of time, things will not be the same. Even though, to me, they don’t grow fast, they still grow. And I don’t want to miss any of it because I’m too busy trying to get through it. 

Image credit:  Jon Rayer 

With My Eyes Closed

Most of you know that I am a single parent. From mid-June to mid-August, my sons visit their father 700 miles away, and I get a much-needed break. I get some extra work done, take trips, and get a little time to myself – and time to miss my boys like crazy. Two months is too long of a break if you ask me, but we’ve been doing this for nearly eight years, so we deal with it.

But those ten months – from mid-August to mid-June – are all me. I am a full-time SP of two. Some days it feels impossible to fit it all in. Some weeks are so full that I feel like I just can’t do it anymore. I finally reach Friday night and collapse on the couch with a glass of wine and stare at the TV because I can’t even think straight. And so, I’ve written a bit about single parenting, including my 5 tips for single parenting with autism. When I think of that post it makes me laugh (hysterically) because it’s so difficult for me to do the things I am suggesting that other people do! Not practicing what I preach in that regard, that’s for sure. I never applied for respite. Ever. Hadn’t heard of it, didn’t know it existed. Missed that boat. My life feels so disorganized. I don’t have time to exercise. Sometimes I fear that I’m a walking “before” photo of a nervous breakdown.

So it doesn’t surprise me that last week, after trying to cram a bunch of errands in one fell swoop, I forgot the toilet paper. Not just as in “I went to the store and forgot to buy toilet paper,” but as in “I bought toilet paper at the store and forgot to bring it home.” And it took me eight days to remember that I forgot it. I was going through my wallet full of receipts at the end of the week and saw it on the receipt – a 12-pack of Scott’s 1000-sheet rolls. I get that kind because it lasts longer, so I have to buy toilet paper less often. So infrequently, in fact, that when I do buy it I just leave it on the bottom rack of the cart in the parking lot. And then I drive away. And I don’t remember that I left it in the parking lot until eight days later when I see it on the receipt and realize that I don’t remember bringing the large package into the house. No recollection whatsoever. Here I am, in the store, so proud of myself for thinking ahead because I don’t need toilet paper yet, we’re only half-way through the current 12-pack, but it’s on sale for a fantastic price, like, half what I usually pay, so I put it on the bottom rack of the cart. I am careful to mention it to the checker so that he rings it up and I pay for it, but then I promptly forget about it.

Oh, eff me, I mutter at the receipt. It’s not like it was a huge financial loss, but I just think, really? I try to get ahead of the game and this is where it gets me. I briefly consider calling the grocery store to explain what happened, to ask if maybe one of their courtesy clerks remembered seeing an abandoned multi-pack of toilet paper when corralling the carts. Eight days ago. I dismiss it – like I have time to do that in the first place. Chalk it up to loss – one 12-pack of Scott and my semblance of sanity. I’ve had to let go of worse.

But my subconscious, it would seem, will not let it go. Unbeknownst to me, my subconscious ruminates for a few more days. It thinks, Yes, she’s got a lot on her mind, a lot on her plate, but this isn’t the worst shape she’s ever been in. Surely she didn’t leave the toilet paper on the bottom rack of the cart in the parking lot. My subconscious works on this for three days, apparently, and then all of a sudden, while sitting in front of my computer and not thinking about the toilet paper, something pops into my head. A flash of memory:  I am putting the toilet paper on top of the vacuum cleaner because there is no room on the shelf where I usually store it. I gasp and run down the hallway to the closet where I keep the vacuum cleaner. I rip open the door and there is the Scott 12-pack, sitting on top of the vacuum cleaner. And I laugh.

I laugh because I realize, once again, that it’s not as bad as it seems. I may not be exercising yet (must get back into yoga), and I sure need to organize my time better (life coach, maybe?), but I think I’ve got a handle on things. If I can remember something as insignificant as the toilet paper I thought I forgot, I’m doing all right. Right? I can do this. I can do this with my eyes closed, it would seem. Some days, at least.

Bert

I don’t really remember having a hero when I was growing up. Some kids idolize actors, musicians, and athletes. Some kids cite firefighters or other rescue personnel as heroes. Sometimes teachers, even parents. Religious and political figures. And then there are those who have fictional characters as their heroes – movie, book, or cartoon characters and superheroes (I admit, I did have a bizarre crush on Aquaman for a while).

As adults, we often develop different heroes (fortunately, for some of us). Our friends and spouses, for example. Our siblings. For many, parents still head the list. Those of us who are special needs parents often list the teachers and therapists who work with our children as our heroes, not to mention our children themselves, with all that they go through. And then we – parents – have each other. We inspire, listen, support, encourage, and make suggestions. We reach out, share, learn, and hope. We identify with each other.  We are each others’ heroes.

And now I have a new hero to add to the list – the ever-growing list of fellow autism parents I have become fortunate enough to know, either online or in person, or both. I want everyone else to know about him too, because I think he’s phenomenal. I’ll call him Bert. Bert attends the support group that I facilitate. He’s 84 years old and has a son with Asperger’s. Eighty-four! His son is 58, and Bert drives him to work and cares for him. (He recently applied with a local organization that handles adult DD services to get some support systems in place.) Bert reads anything about autism that he can get his hands on, takes notes, and comes to the meetings to tell all of us about what he read. He tells jokes, encourages us to lean on each other (like AA people, he says), and patiently listens to those of us with much younger kids. He reminds us that even though our kids are all different and at different ages, we share many similar experiences. He wears a cute straw hat and plaid shirts and I just want to give him a big hug. All of us inspire each other, but that man, that gentle, devoted, amazing man, is my new hero (sorry, Aquaman).

Bert, I want to be like you when I grow up.

Enough

And so, high school begins.

Inspired by a friend of mine who is another special needs parent, I prepared an information sheet about Neil to give to all of his teachers. Why, with all the proactive things I do to ensure my son’s success, had I not thought of this before?! It’s such a basic, fundamental thing to do! Imagine how much better things might have gone in middle school had I thought of this then! *slaps forehead*

Alas, the idea had not graced me with its presence. I muddled through somehow. But I am happy to report that I am now on track, and this afternoon I presented all of Neil’s teachers with an information sheet listing his background, his strengths and weaknesses, descriptions of his mannerisms and behavior, and tips for helping him to learn and function at his best. The teachers seemed interested and appreciative. Not all were there, but I brought extras to be given later to those who were unable to attend the meeting. The regional autism consultant, who had shadowed Neil on his first day today, said that he seemed to do pretty well.

But afterward, as I walked through the halls on my way out to my car, the nagging doubt returned. The anxiety. I saw a wall display in one hallway that Neil and I had walked through last week. The school mascot is the pirate, and the display cabinet held student artwork in it. Across the top of the display, in large letters, was written “Pirate allery.” Neil laughed and pointed at it, saying in a loud voice, “‘Pirate allery!‘ The G is missing! Ha!” Then he laughed some more. “Yes,” I said, smiling. I continued in a quiet voice, trying to get him to tone down his loudness, “That’s funny.”

And really, it was pretty funny. But in that moment he reminded me of the fact that he has the emotional age of a 9- or 10-year-old. It’s not new to me, but sometimes it just hits me. And I’m mainstreaming him in high school. It’s like sending a 9- or 10-year-old to high school. *sigh* I walked out to my car, drained (this is the third time in a week that I’ve had to leave work early to go to the high school for a meeting), wanting to be hopeful, but so, so worried. So resigned to the reality, the uphill nature of parenting a child with autism, the constant wondering if I am doing enough. I have been at both ends of the spectrum with my son, and both are difficult. Some things were harder then, and some things are harder now. But if it’s hard on me, how must it be for him?

At least the high school support systems are now in place. In addition to the information sheets I gave to the teachers, I submitted a stack of print-outs of my post “Getting to Know an Autistic Teen” for Neil’s peer advisory group, twenty kids he will be with all year long, some in other grades. The advisory teacher will give them out to the group sometime in the next few days. I said a quick prayer as I crossed the threshold of the school, hoping that this disclosure will lead to acceptance.

I got in my car and started it. Tired, lost in thought, I reminded myself that I needed to stop at the post office. As I pulled away from the curb, the car stereo came on automatically. And there it was – already. A response to my brief subconscious prayer. “Don’t worry . . . about a thing . . . ‘cause every little thing . . . gonna be all right.” I sucked in my breath, overcome with emotion. I didn’t remember that I had Bob in there. But that song, those words – right at the moment that I needed them. Such a gift.

Thank you, I said, relief washing over me.

Uphill

In addition to meeting with Neil’s new case manager last week and doing a walk-through at the high school, we had another reason for going there. Neil needed to do a dry run of riding his bike to school.

Yes, despite past reactions to insects flying in his face, he wants to do this. And I need to let him. He has a fiercely independent spirit, which I think has served him well and will continue to. We have gone over safety concerns ad nauseam, and I think he’s ready. I have to trust that he can do this.

So, that afternoon on the way to the high school, he rode his bike and I waited a few minutes before following in the car. It’s only a mile to the school, but there are several stop signs and intersections along the way, and his job was to time himself so we would know what time he needs to leave the house in the mornings. I told him to ride at a normal pace, to stop at all the stop signs, and not try to hurry up if I passed him.

I pulled out of our driveway and drove to the first intersection and turned. There, about a hundred yards ahead of me, was Neil on his bike, gesturing to three teenage girls as he rode past them. It looked like he was either giving them a thumbs-up or pointing ahead in the direction of the high school. I couldn’t tell what he was doing. But after he passed them and continued on, I could tell what they were doing. They were mimicking his gestures in an exaggerated manner. And laughing.

Unfortunately I have witnessed my son being laughed at many times. But because of that, I have learned how to respond in the most results-oriented way. I have lectured other kids, I have spoken angrily to them, I have glared at them. These reactions are instinctive. Of course, as parents, we are angry, we are incensed, at seeing our children disrespected in this manner. We want to lash out and make it right, even if our children weren’t aware of what happened at their expense. But what I have learned over the years is that if I approach the kids in an open, positive manner, most will respond much better than if I approach them with anger.

Neil was at least 50 yards ahead and didn’t notice me pull up to the three girls. I rolled down my window, smiled, and asked if I could talk to them for a minute. “Do you know that boy on the bike who just rode by?” Two didn’t, one said she had seen him when she was at the middle school two years ago. I continued in a pleasant voice. “Well, I just thought you should know that he has autism, and he’s my son.” I could see a little embarrassment on their faces. “Ohhh,” they said, “he has autism? We didn’t know.” I was glad that they seemed to know what autism was. Years ago, when he was younger, people didn’t. “Yes,” I continued. “Most people don’t realize that, so I wanted to mention that to you. He’s going to be starting at the high school next week, so I just wanted to let you know in case you see him around. Sometimes people with autism have behavior that’s a little different; thanks for understanding.” “Okay,” they all said, and the older girl said, “Thanks for telling us.” I thanked them again and drove off.

On my last post, M had mentioned the following in his comment:

I think the one thing people tend not to get (the general public, people not connected into autism issues) is the fact that every single step is uphill. There are no days you get to relax, not worry about it, coast on autopilot. If Neil is in a public setting…and especially a highly social environment like school…every day requires vigilance, effort…it’s all uphill.

Even when we have successful meetings, when Neil participates and advocates for himself, we never get to sit back and relax. Every day we contend with people who don’t understand, who might laugh at him, who might egg him on purposefully until he reacts in anger. These incidents will contribute to stress, self-esteem issues, and will definitely affect how well he does in school. It’s a constant battle. All uphill, just like M said.

And that’s why I talk to people every chance I get. It’s not easy for me, being an introvert, but it’s what must be done. That day, I talked to three girls. Three people. A drop in the bucket. But getting those three people on our side might make even a slight difference. And I’ll take it.

A few minutes later, I parked at the school near the bike rack. Neil soon rode up, dismounted, and began locking his bike on the rack. I walked over. “Did you know those three girls back there?” I asked him. “No,” he said. “But they seemed nice.” “Yes,” I said. “I think they will be.”

It’s Time

This is the week for me. The mad-dash week before school starts. All parents know how it is with registration, getting school supplies, checking schedules, that kind of thing. And all special needs parents know how it is with the added emails, calls, meetings, walk-throughs, etc. that are necessary in getting our children set up with the support systems they need to be successful. In a transition year – either starting at a new school or at a new level of school – those efforts are doubled.

This year Neil starts high school, so he’s at a new level and a new school.  With all the stress I’ve been experiencing lately, I feel like sitting in a corner and rocking, stimming my stress away. So far it’s gone smoothly getting things set up for him, but there is so much time, effort, and energy (mental, emotional, and physical) involved that I feel like I am nearing a breakdown. I so want this to work for him. I want him to be comfortable and confident. I want his needs to be met. I want him to be accepted and appreciated. I want him to focus and learn and also have fun. I don’t want to worry about getting calls at work about behavioral issues because someone has purposefully pushed his buttons. I don’t want to worry about what our options are if this doesn’t work. Please, please, please God, let this work. Let him be happy.

We went to registration today, and then met Neil’s new case manager. How must this woman feel? I’m sure she’s aware of the fact that we special needs parents place so much hope in her. I know she’s aware of that. In fact, she must have picked up on my desperate vibe, because at one point she said to Neil, “I’m your school mom.” No one has ever said that before. And I wanted to cry and hug her and thank her because she obviously gets it. She knows how important her role is. I sometimes wonder if these professionals who work so tirelessly with our children, who are devoted to their success and well-being, feel the strain that we parents feel at the beginning of the school year. This combination of hope and anxiety. I should come up with a name for it. After all, it’s not just at the beginning of the school year that I feel it.

Anyway, when she said, “I’m your school mom,” Neil gave a small, cute smile, like he thought the idea of a “school mom” was silly. But I sensed that it comforted him, and he understood her meaning. In that brief meeting, she really listened to him. I could tell that he felt respected, and comfortable. The regional autism consultant, who has known him since his nonverbal days, was also at the meeting, talking about his strengths and making recommendations. His speech therapist from the past three years was there, and we found out that she would continue to work with him and facilitate the social skills class that he will take. I feel very optimistic, even though the anxiety is hovering in the back of my mind.

However, the bottom line, the “take-away,” is that Neil didn’t just attend this meeting. He participated. He was slow to answer at times, rarely made eye contact, and was frequently off-topic with his requests and comments, but he was an integral person. And he even remembered to cover his mouth when he yawned, which shocked me after all these years of telling him it’s the polite thing to do. I swear I think it was the first time he ever did it on his own.

But at this meeting he accomplished things that were so much more important than being polite. He spoke up and discussed his needs. He told us which subjects he needed to take at the lower level, and which he didn’t. He mentioned his experience with bullying. He advocated for himself. And I am sitting here in tears as I write this, because the boy who, at the age of five, could not tell a doctor his own name is now advocating for himself. He really is. And I sense that this is only the beginning. It’s like he’s trying to tell me, Mom, I got this. I know it’s not time for me to step back yet. No, there is still much more work for me to do.  But it’s time for me to let him step up. He’s part of the team. Yes, he is.