Category Archives: parenting

Home Again…

…home again, jiggity–700-mile–jig.

Please extend a warm welcome-back to Adam, who turned 14 on the 15th:

and Neil, who acquired a hand-me-down laptop this summer:

I don’t even have an iPhone, but anyway, my boys are back, and I am complete again. I remember a few summers ago when I was lamenting to an acquaintance of mine (who did not have children) about how much I missed them. He said, “If you miss them so much now, how are you going to manage when they go to college?!” I bristled and tried to be diplomatic when I pointed out that they’re supposed to go to college when they finish high school, not preschool, as Adam had the first summer he spent away from me. Leaving home is “supposed” to happen when they’re eighteen or nineteen, not when they’re five. It’s not supposed to be like this, I would moan every summer. They’re so little! They’re supposed to be with me now. But that’s not how it happened for us. I’ve had to get used to not seeing my children for several weeks at a time, since they were very young. Sometimes it’s been outright surreal, year after year. I would liken it to how it might be if I were in the military, but I have no experience in that area, so that’s merely speculation. I do know that these last nine summers have been yet another lesson for me in letting go, in trusting, and in being open to something outside the typical parenting experience.

In any case, we are now in the midst of the end-of-summer shuffle: the filling out of registration papers and standing in line to turn them in and pay fees, the scheduling of IEP meetings, the inventorying of past school supplies and the shopping for what’s needed, the getting back in touch with friends, therapists, and teachers. But it’s good to have them home. It’s good to know that they’ll be comfortable when they start school in less than two weeks. It’s good to have things settled. It’s all good.

And for the record, I’m still going to miss them when they go away to college. But oh, when and if that day comes, I will be one proud mom.

Of course, I already am.

Surrender

It would be almost impossible to enumerate the many things we learn from our children, particularly those who have special needs. Infinite patience, for one. Hope. Perspective. Appreciation. Acceptance. Love. And maybe a thing or two about dinosaurs or natural disasters.

But with each of our children, special needs or not, if we really stop to think about it, we might find that one thing stands out above all else. The one thing that we really needed to learn from them, and from them alone. I wrote recently that what I have learned from Neil is the power of belief.  More than anything else, every day of his life, Neil has taught me to believe. But what I have learned from Adam is just as valuable.

In a word – surrender.

We’re not conditioned to view surrender as a good thing. To most of us, it means giving up. But to me, surrender means letting go. It means letting go of that which I cannot control. It means letting go of expectations. It means accepting What Is. And it’s something that Adam, even more than Neil, has taught me every day.

*

Unfortunately, I don’t write as much about Adam. This website is called Teen Autism, and Adam was never officially diagnosed on the spectrum. He did, however, experience a significant delay in language development, necessitating speech therapy until almost age ten. But what really affected him – and still does – is his sensory processing disorder. He must have been miserable as an infant, toddler, and even a preschooler. It wasn’t until age five that he seemed to be somewhat at home in his body; he was finally talking and smiling more often than crying and yelling.

But his eating issues continued to get worse. Whereas I would call Neil a picky eater, Adam is a limited eater. A year ago, as he was nearing 13, I started to realize that it seemed to be a control issue with him – not to control me, but to have some control in his life. He couldn’t control that his dad, whom he idolized, lived 700 miles away. He couldn’t control that he had an autistic brother. But he could control the food that he decided to eat. So what started off as a sensory issue developed into something even more involved.

And it bothered me greatly, not just because I worried about his health and his growth. It bothered me that I couldn’t just cook dinner for my child and he would eat it. Even at age 13! It bothered me that he was a teenager and, like his brother, should have been eating me out of house and home (even though Neil is picky, he still manages to eat a variety of foods, and in mass quantities). And it bothered me that Adam would eat more food when he was with his father. I took him to see a counselor, and he fought me, saying, “You’re making me do something against my will!” I compromised, telling him that if he increased his dinner choices to seven things, one to rotate each day of the week, that we would stop going to the counselor. He reached that point within three weekly sessions, and although I followed through, he has since lapsed to five or six items on the rotating dinner menu.

So I surrendered.

I let go of my expectations about Adam’s eating habits. I let go of my expectations about how he responds to having an autistic brother (hint: it’s not always noble or gracious; in fact, usually not). I had to surrender. I had to. And I thought that if he could spend more time year-round with his dad that he might start eating better when he’s with me, too.

*

He has been with his dad for over three weeks now. I’ve talked to him several times, and the last time I did he told me, with excitement and pride in his voice, “I’ve been trying lots of new foods, Mom! I’ve been eating a lot.” And I told him, choking back tears, that I was so glad to hear it.

And someday soon I will tell him that there is nothing I wouldn’t have done to help him to be as happy and healthy as possible. I will tell him that it’s okay that he’s not always glad to have an autistic brother, that I honor his feelings. I will tell him that I accept the fact that he eats differently. And I will tell him that I have become a more balanced person because of it, because of learning to surrender.

Adam, age 9, being a tiki at Pu’uhonua National Historical Park, Hawaii, 2006

Motherhood

I never thought it would be like this . . .

That my child would cry so much for so long

Or have great difficulty in learning to talk

That one would shriek and writhe on the floor because someone flushed a toilet or turned on a coffee grinder

And the other would only eat four foods and couldn’t learn to ride a bike

I never thought that my children would have special needs

That I would be a single parent

That I would have to attend so many meetings and therapy appointments

That I would have to mastermind my son’s education

That I would be forced to homeschool him for eighteen months

I never thought that my older son would wander and get lost

And that my younger son would have to help look for his older brother

Or that I would still grieve whenever I heard young children who could talk . . .

I never thought my heart could be so full

*

I never thought it would be like this . . .

That one child would learn to read at age three and the other at age nine

That the one who lacked imaginative play would someday love fiction

And the other, who couldn’t hold a pencil, would become an artist

I never thought it would be so monumental to take a nine-year-old into a grocery store without a sensory meltdown

Or that a fifteen-year-old’s first unprompted ‘thank you’ would be so gratifying

I never thought that one son could play on a team sport, attend a concert, or enjoy the theater

Or that the other son would design his own video games and become a voracious reader

I never thought anything could give me as much peace as when they get home safely each day

That there would be so many “little” things to celebrate

Or that through my sons I would meet such wonderful friends of my own

I never thought that the emergence of voice inflection would be such an unexpected gift

Or that I would weep with joy when my son made a new friend . . .

I never thought my heart could be so full

Taking the Evening Off

You know how it is. When you have a child with special needs and you dare to venture out in public, you often get stared at, sometimes judged. You know what people are thinking because occasionally they say it out loud. “Somebody needs a spanking!” “Can’t you control your child?” “You shouldn’t have him out in public, disturbing others.” I’ve heard it all. And believe me, it got to a point where I just stayed home, other than the mad dash to the grocery store, when I needed something and there was no one to watch my boys, so I took them with me. And why bother with restaurants? My older son’s sensory issues were so extreme that he would writhe on the floor in agony, wailing “go” every few minutes. It was one of the only words he could say at age five.

Time passed, and we dared to venture out a little more. After years of intensive therapy, my son’s sensory issues had become more manageable. But only for a limited time, of course. After ten or fifteen minutes in a restaurant, he needed to crawl under the table for relief. This does not look good at any age, but it’s really frowned upon by age twelve. And although my son had eventually learned to talk, he still didn’t understand the social expectation of thanking the wait staff when they bring you something in a restaurant. I would always model the appropriate response, and at some point, my son started parroting “thank you” when prompted. Almost every day, in various situations, I would need to prompt him. After a while, after the thousandth time, I thought it would always be that way.

Then one day not too long ago, at the age of fifteen, my son said his first unprompted thank you when someone had waited on him. I was happy, of course, but I figured it was an isolated incident. I figured that we’d go right back to the prompting routine that had been in place for so many years, that it was a crutch for him. You see, even when my parenting is not being openly criticized by others, I criticize it myself. You know how it is.

Soon after that day, we went to a restaurant. I sat in awe as my sons tried to converse. There was no wailing, no writhing on the floor. No crawling under the table. No going up to other tables and repeating a line from whatever movie had been watched earlier in the day. And when a plate of food was placed in front of my older son, he said Thank you. Completely unprompted. And I allowed myself to entertain the notion that maybe all the years of prompting had not been a crutch. It had been what he needed in order to learn what was socially acceptable, what was expected of him. It just took him a really long time to get it down.

And now, he’s got it down. Last week, we went out to dinner at a restaurant that we’d gone to periodically over the years, once my son had gotten to a point where he no longer wailed and writhed on the floor. In the past, he’d crawled under the table many times, he’d gotten up and walked all around, he’d had to go outside for sensory breaks. He’d never acknowledged the waiters. But this time was different. This time it was like autism took the evening off.  

I know that’s not how it is for my son. Even on the infrequent occasions when things seem effortless, when things flow seamlessly, he is hard at work – processing, filtering, anticipating, regulating. Autism is always with him. But that evening, at dinner, he was flawless. He placed his order like a pro, he conversed, he joked with the waiter, he thanked him – unprompted – three separate times (!), he politely and discreetly asked where the restroom was and returned to the table afterward without wandering. It was nothing short of amazing, and perfect for the occasion – celebrating the publication of my book. For the first time ever in a restaurant, we were able to stay for dessert, and I savored every moment.

But the real treat, the best moment of all, was when the waiter brought us the check at the end. “I just wanted to tell you how well-mannered your sons are,” he said to me. Of course, all parents love to hear that. They smile and say thank you; they’ve probably heard it before. But I never had. And my face probably looked strange to him as I said, “Thank you very much,” while trying not to cry. All those years and years of stares and judgment, writhing and wailing and crawling under tables are finally behind us. Not to mention the years of incessant prompting, wondering why I bothered. Now I have my answer.

And I don’t think that waiter will ever know how much his words meant to me.

 

Image credit:  Aeyvi Poe

Nothing I Wouldn’t Do

When Neil was diagnosed with autism in 1997, his father and I immediately enrolled him in an ABA-based program that we were fortunate enough to have access to all those years ago. We hadn’t even heard of ABA. But we were steered in that direction by the therapists, teachers, and autism consultants who had identified him, and we went with it. We were surprised to learn of the intensive nature of the program – thirty hours a week with two weekly home visits. At that time we were living at poverty level, so the state paid the staggering costs of the therapy our nonverbal son so desperately needed, and we were grateful.

But had we been faced with footing the bill ourselves, we would have moved heaven and earth to do so. As it was, I went back to work shortly after the diagnosis. My then-husband worked evenings and weekends while I worked weekdays. Even with our nearly opposite work schedules, we still had some crossover time when we both needed to be at work. Neil could not be put in daycare due to the severity of his autism at the time. We tried a few places and were turned down. There was also Adam, who was eighteen months old then. My father had recently retired and offered to babysit a few afternoons a week to fill in the gaps, and I am forever grateful for that. My boss allowed me to leave work early when needed, and I am equally grateful to her. We made a lot of sacrifices and relied on the assistance and understanding of those close to us to get through those early years.

At some point, we noticed with dread that Adam had strong sensory issues and a delay in language development and enrolled him in a therapy program similar to Neil’s, minus the ABA component. Having two special-needs children with all of their therapies, doctor appointments, teacher and specialist meetings, and juggling work and, ultimately, single parenting was painful, especially when their father moved 700 miles away. But I did what I had to.  And I would do it all again. There is nothing I wouldn’t do for my boys.

And I still do. When Neil was terribly bullied at his middle school two years ago and the administration would not, as I requested, talk to the student body about developmental disabilities, I pulled him out and made sacrifices to be able to homeschool him. When Adam developed an unknown health issue last year, I racked up innumerable hours scheduling and attending all of the various medical tests he endured and then the surgery, once his condition was identified. But that’s what you do. You do whatever your kids need. And it has become painfully obvious that my boys, now teens, need two things: more time with their father and specialized instruction for Neil.

Nothing I wouldn’t do.

So I take a deep breath as I write this, as I commit the concept to print: We are moving to Los Angeles. Not next week or next month, but soon. In mid-June, for the past eight years, the boys have gone to visit their father for several weeks. This June, they’ll move. I’m putting my house on the market in about three weeks, and I will join them in L.A. as soon as it sells.

It’s a huge change for all of us, but one that I believe will yield many positive results. Neil will attend a specialized school for autistic students that will target his lack of executive function. And with his recent announcement of wanting to go to film school for college, we’ll be in the right area for that to happen down the road. Adam, who has had the hardest time living far from his father, will be near him year-round. And I plan to finally find a job that fits a little better with my English degree, as well as spend time with other family members whom I have missed for many years (I was born in L.A. and moved to Oregon for college).

But I can’t begin to describe how much I’ll miss beautiful Oregon and our family members and friends who live here. I have no doubts that this move is the right thing to do, and that this is the right time, but I have spent half of my life in Oregon, and there is much to be missed. It’s not called “God’s Country” for nothing! Then again, the other half of my life has been spent in the “City of Angels,” and, truth be told, my feelings aren’t too mixed about returning to it. But for now, I’ve got a yard to spruce up and lots of paperwork to fill out.

It’s time.

 

Image credit:  Adrian , Canada

The Lowdown, Vol. 3

Since the boys are gone this week for Spring Break (visiting their dad in L.A.) and I am feeling the usual disjointedness with them away, I figured it was time for another edition of Personal Posts. Because I’m sure you were all waiting for it with baited breath, right? No? Okay.

So, we’ve lived in our current home for almost seven years, and the carpet is sporting seven years’ worth of stains and hard living (with two boys and various pets trampling it), so I’m having it replaced. I had hoped to have it done while the boys were away, but it turns out that the installers are on Spring Break as well. So it’s going to be done next week, and I’ve spent all of this week moving everything out of the rooms and closets – seven years’ worth of books, DVDs, papers, Lego, clothing, Nerf guns, action figures, cars, stuffed animals, and whatever else I stuffed in our back room, to be sorted later. Then I touched up the walls in the rooms that will get new carpet, and I used up a half gallon of paint just “touching up” the boys’ rooms!  Not to mention half a container of Spackle. God help me, boys are hard on a house!

But those boys are also the loves of my life, and I enjoyed talking to them on the phone yesterday. They are having a blast, spending time with their dad and visiting with L.A. friends, and they even got to go to Universal Studios! Neil was ecstatic over the Jurassic Park ride, of course. Adam, with his vestibular issues, preferred the Mummy ride. They had flown down again, their second solo flight, and everything went well. When it was time to board, I waited with them in line for a few minutes, and as they neared the ticket-taking agent, Adam said gently, “Mom, I think we’ll be fine now. You don’t need to wait with us.” And Neil chimed in, “Yeah.” So I tried not to cry and hugged them, saying, “Be safe and have a great time. I love you!” And as I stepped out of the line, an older lady a few feet behind us said good-naturedly, “You boys be good now!” And right then, at that moment in the airport, I felt like a regular parent. A regular parent saying goodbye to her teenage sons as they boarded a plane, trusting that everything would be fine.

I smiled and waved, watching them pull their carry-ons. And for the first time, I felt normal. I know – we shouldn’t use that word. I even discourage Neil from using it when he describes non-autistic people, because I want him to think of himself as normal too. But the nonchalant way that woman said what she said, and the way I felt just knowing that I didn’t have to worry, I can’t think of another word for it. I guess the fact that I was aware of feeling that way negates the normalcy of it. But I don’t care. I felt normal, or what I assumed felt normal, and it was great, that little glimpse. And hard-won. I sat at the gate for a while longer, and then I watched the plane take off, taking my beautiful, almost-grown boys with it. And although I feel disjointed with them away, somehow it feels a little more manageable this time. A little more normal.

The A-Files

I started watching The X-Files when my first child was born in 1994. I would often watch an entire episode with Neil sleeping on my shoulder, gently rocking him as I waited for his father to get home from work. The show’s then-unconventional subject matter of two FBI agents investigating strange crimes and bizarre phenomena appealed to me, and I continued to watch it until it ended in 2002.

Meanwhile, in 1997, I started keeping my own files. That was the year that we began having Neil evaluated for his lack of language development, among other concerns. We went through numerous tests, home visits, and various assessments over a six-week diagnostic period. And then we were told what the therapists probably knew much earlier: it was autism. Our first IFSP meeting was scheduled, early intervention services began, and my files grew. Six months later, I discovered the website for the Autism Society of America and was relieved that I now had some information that I could print out for relatives and friends to read – basic information about autism that had been so hard to find twelve years ago. I made copies and put them in the file.

A year or so later, we began to realize that our younger son also exhibited signs of autism – a disheartening language delay and notable sensory issues. So he was also evaluated, and, although not diagnosed with autism, he still needed speech and occupational therapy. I started a file for him, too.

The years went on, and two kids with IEPs produce tons of paperwork. I saved most of it, wanting to have everything documented, trying to be a responsible special needs parent, and just not sure what needed to be saved and what didn’t. In addition to the boys’ individual files, I also kept files on general autism information as well as related special needs advocacy information. The files were both full of articles I’d pulled from magazines and newspapers over the years, old clippings from genetic theories to the vaccine issue to stuff I’d found on terbutaline and other neurotoxins. I clipped sidebars on teaching strategies, visual schedules, and sensory issues. There were reprints from early Newsweek and Time magazine cover stories on autism. I saved articles on biomedical treatments, various types of therapy, autism in adulthood, and special needs estate planning. My files covered a lot of ground.

And last weekend, having the need to downsize to a smaller filing cabinet, I decided it was time to clean out what I’d dubbed “The A-Files.” I tackled my younger son’s file first, smaller due to the fact that he had no longer needed an IEP by the time he turned ten (three years ago). I saved a few of the more important IEP copies and his early evaluations. Then I moved on to my firstborn, whose file had actually torn at the top from the weight of it, and been taped. His, of course, took much longer to wade through, but I think I did a good job of judiciously separating the grain from the chaff. It felt odd to go back so far, to see things that I’d written – behavioral observations, for example – eight, ten, and twelve years ago. I was struck by how little I understood of autism then, but also by how determined I was to help my sons.

By the time I got to the last file, the general autism file, I didn’t realize how fragile I was. I had breezed through my younger son’s file, and although I had lingered considerably longer on my older son’s file, I felt like I did all right with it. I thought that I’d kept my emotions at bay. But I had barely begun to sort through that last file when my face suddenly twisted into a grimace of pain and sorrow. A hideous sob racked my chest. The jig was up.

I know what it was that finally got to me. It was the printed evidence that autism has shaped our lives. Maybe I subconsciously thought that all this paperwork would somehow help. That saving it was like some sort of a karmic point system, that it would make a difference, sitting in my filing cabinet. All that documentation, all that information. Evidence. Unresolved, just sitting there. Like that show I used to watch.

But then the sobs subsided as quickly as they’d begun. I realized that autism shaping our lives isn’t just about the negative. Yes, it’s often been very hard. There are plenty of things that I wish could have been different. But in those files are also many positive reports of progress – the gradual meeting of goals that seemed too lofty when written, emerging skills, developing ability. That, too, is evidence. Evidence of determination, commitment, and hope. You can bet I’m saving that paperwork.

On Blogging

“If you’re one of these people considering giving up on blogging in exchange for paying more attention to Facebook, Twitter, YouTube and MySpace, or whatever else they throw at us mere mortals, bear in mind you are giving up on something rather unique and wonderful.”                —Hugh Macleod

It’s funny how sometimes we never set out to do the things that end up being such an integral part of our lives. Take blogging, for example. I never really made the conscious decision to be a blogger. Two years ago this month, I had recently begun to homeschool my son Neil, who was thirteen at the time. He had been diagnosed at age three with classic autism, and again at age five, because he was still not functionally verbal. Through many years of intensive therapy, he learned to talk and filter his sensory issues so that he could be mainstreamed in public school with full-time assistance. That full-time assistance was dropped in middle school (against my desires), and horrible problems arose. I began seeing regressive behavior that I hadn’t seen in years, in addition to new difficulties that I had no idea how to handle. I turned to the Internet and searched for information on autism in the teen years. I didn’t find much, and I figured that there had to be other parents out there whose children, like mine, had been diagnosed in the early years of the autism “boom.” Those other parents of teens had to also be searching for information, and I wanted to provide a much-needed resource for all of us. I wanted to connect with them – with any parents of autistic children – and end my years of isolation. And so, Teen Autism was born. 

Initially, I didn’t plan for it to be a blog. It was to be a website, so I researched how to create a website. Not knowing code, this undertaking was hugely insane. I bought books, purchased a domain, and discovered through my host that I could use the blogging software called WordPress as a content management system (CMS). This sounded like it would work for what I was trying to achieve. I had to learn some code in order to install the software and get it doing what I needed it to do, and I was pretty proud of myself for figuring it out (after hours of head-banging agony). And then I started writing. I wrote on all of the topics that concerned me as the parent of an autistic child, and I categorized the posts on the sidebar so that other parents could scroll down, click on a category that they wanted to read about (sensory issues, bullying, language, siblings, homeschooling and many more), and all of the posts within that category would come up. I wrote and posted five days a week, trying to build up the categories with information for other parents to read. But I wasn’t really blogging yet.

Occasionally, friends or family would comment on one of my posts, and that was gratifying. My page views per day were increasing, and I received my first encouraging email from another parent of a teen on the spectrum, thanking me for writing. But it wasn’t until about four months later that I really started blogging, i.e. reading others’ blog posts and commenting on them. First Casdok found me and left a comment, and then Mama Edge, who had just started blogging and found me by searching “teen autism,” just as I’d hoped parents would. She left a comment on my post “To Catch a Fly,” and I went to her first blog post, saw her blogroll listing many other parents of kids with autism, and I started blogging. It’s strange to say that I started blogging after I’d already written 105 posts, but that’s how it happened.

I listed my blog on Technorati and the Ringsurf page for autism bloggers, but other than that, I didn’t do anything to market it. I started building up my own blogroll and realized that I was reading so many blogs that I needed to set up a reader, which I did at Bloglines. My feeds have changed a bit over the last year and half, but I am currently reading 72 blogs, and the majority of them are autism-related. For now, that’s my focus. I intend to keep posting on Teen Autism until Neil, now 15, transitions out of high school, and I’ll write about that experience for a few months. Almost a year ago, Neil went back to regular school part-time (with assistance), and I resumed working full-time, so I had to reduce my posts per week. As a single parent of two boys whose father lives 700 miles away, I don’t have much free time. But the connections I’ve made through blogging are so important to me that when I do have free time, usually in the late evenings, I blog. It’s a lifeline for me.

But even lifelines have to be scheduled. I’ve been asked how I manage to blog, comment, work, advocate for my son, advocate for others (through volunteer work that I do as a Chapter Rep for the Autism Society of Oregon), and be a single parent. To be honest, I’m not sure how I fit it all in. Some days are very hard for me to keep it together. But there are three things I do that help me immensely. First, everything is scheduled, even showers. Of course, things always come up, so the schedule must have some built-in flexibility, and that’s challenging. But it’s essential. Second, I maintain perspective. Every night when I go to bed, I lie in the dark and take five minutes to remind myself that my kids are safe in their beds, we have a good roof over our heads and food in the kitchen, and I have a job that doesn’t have me on my feet all day (I have a lot of respect for people in service-oriented jobs). It’s a mental gratitude journal, reminding myself of the positives in my life, and it’s essential to my well-being. The third thing I do is just keep moving. My life won’t always be this busy, and if I keep moving, eventually I’ll get to a point where it’s a little less hectic. Sure, I’ll always “keep busy,” as my retired aunt says. And I certainly look forward to the day when I’m able to choose how I spend my time. But for now, with the little time I have available for chosen activities, I choose blogging. I may be an accidental blogger, but I am a devoted one. And a grateful one, too.

Image credit:  Svilen Milev 

When It Hurts

Sometimes, when you’re the parent of an autistic teenager, you have to write letters like this:

Dear [Regional Autism Consultant] and [Neil’s speech therapist],

I hope this finds you both well. Neil continues to benefit from your social skills class, and I want to thank you both for doing it. I wanted to run something by you that I think would be an important addition to the regular social skills teaching. Today I had a meeting with [his case manager], and she mentioned that a student told her about a situation in which Neil was being taken advantage of and laughed at. During lunch, a group of students were encouraging Neil to tickle random people, and they would laugh when he did it. As you might remember, Neil has been targeted in this manner before, and it always pains me to hear of it.

I would be so grateful if you would work something into the social skills curriculum to help him learn to recognize these sorts of situations when people have fun at his expense by telling him to do something inappropriate. He doesn’t realize that it’s inappropriate or that he could get in trouble for touching other people. He thinks he is making friends this way, but the “friends” are laughing at someone with a developmental disability. They know that Neil lacks social awareness, and that’s why they target him. They are not innocent little kids anymore. And yes, Neil has been told before that real friends will not get him to do things that he shouldn’t do, and then laugh about it. But he needs constant reminders from people other than his mother. He needs to be taught how to recognize these sorts of situations. If a random student notices and takes the time to tell a staff member about it, then it’s pretty significant. And I’m sure it’s not the first time, even though it was the first time that was brought to our attention (that I know of).

So I think it would be helpful for Neil to have some reminders about what’s inappropriate at school, and that if someone tries to get him to do something and they are laughing about it, they probably don’t have his best interests at heart, and they should be avoided. I tell him these things, of course, but I think if he hears it from other adults (or peers who care) and is taught how to recognize those situations (perhaps through roll-play), then he might start to understand.

Thank you so much for your time and the work you do with my son.

Best regards,

Tanya Savko

And it breaks your heart, again and again. You believed that things were going well socially at the high school, that the other kids had matured since middle school, that these things weren’t happening any more. You hoped that no one would be insincere with him at his first dance, and you wonder if they were and your son just doesn’t have the social awareness to realize it.

Sometimes, as the parent of an autistic teenage, it really hurts. You’ve been advocating for over twelve years since the diagnosis, and you still have to do it. You still have to manage your pain and quell your anger. You have to keep moving, keep doing, keep hoping.

And no matter how much you love your son and the wonderful person that he is, no matter how far he’s come and how much he’s achieved and how high your hopes, it still hurts. For both of you.

Coming Home

It used to be, up until less than two years ago, that my favorite time of day was in the evening, when the boys went to bed, and I had an hour or two before my own bedtime. The day was over, and I had a sliver of time to myself to read, meditate, write (if I had the energy), or watch a movie. And it wasn’t just the time to myself that I loved, it was the security in knowing that my children were safe and (usually) well, and that we had made it through another day. All was right in my little corner of the world.

I still love the evenings and the sense of peace and comfort that they bring. But my favorite time of day has changed. It’s now 3:40 PM. That’s my new serenity time.

I get off work at 3:00 and head home, stopping to pick up the mail at our local post office, since I am among many in our small town who do not have mail delivery to our homes. I am usually home around 3:20, alone except for the cats, who rub against my leg to welcome me (or, as I’ve read, to mark territory, but affectionately so). I set my things down and go put on my slippers as part of my little transitional routine. Then I sort and read the mail until 3:30, when Adam arrives. He comes through the front door, calls out “Hi, Mom,” and I go over to give him a hug and breathe in the scent at the top of his head. Home. One down, one to go.

Usually within ten minutes, by 3:40, Neil comes through the back door, after he has put his bike away in the shed.  As soon as I hear that door open and shut, I breathe a sigh of relief. The route is less than two miles, but any number of things could go wrong. Once, a few months ago, he had been delayed due to bike problems and called me on his cell to ask me to come and get him. And so, when he wasn’t home by 3:50 one day last week, I thought at first that perhaps it was because of bike trouble again. I waited for the phone to ring, but it didn’t. When the clock struck four, I was out the door. I instructed Adam to man the phone and to call me on my cell if Neil called or came home.

I drove his usual route, checking down side streets to see if he had stopped to talk to someone or pet a cat. Then, about a third of the way, I saw him riding toward me (thank God), and I pulled over. He came up to me, breathless, and launched into a monologue about how he’d stayed after school to talk to his new drama teacher about a play that he wanted to write and produce based on Honey, I Shrunk the Kids. He had that dazed, New Obsession look in his eye, and I groaned inwardly. In his present state, he could not fathom that I had been worried, that he should have called. Midway through his prop ideas, I gently cut him off, saying that we needed to get home and he could finish telling me there. “Okay,” he said, and started off. “But take your time! We’re not racing!” I yelled out quickly.

We got home, and as I climbed out of the car, he rode up and started in again about the play, right there in the driveway. “Put your bike away, and let’s go inside to talk about it,” I said gently, but business-like. And he did.

I got in the house, still feeling the uncomfortable effects of the fear-based adrenaline, and called out to Adam that Neil was back. I collapsed on the couch, and he came inside a moment later. I stood in front of him and put my arms around his unbending frame before he could start talking. “I’m glad you’re home safe,” I said. “I was worried because you were late, and you didn’t call to let me know.”

He got it. “I’m sorry,” he said sincerely. It was one of the rare times he’d said “I’m” in front of “sorry.” He said that he got so excited with talking to his teacher about his ideas for the play that he didn’t think to call. Of course, I’d figured that’s what had happened the moment I first saw his face, lost in a new obsession. I know that look.

He drank some water then, and sat on the couch to finish telling me his ideas. After a few minutes, he got up and announced that he was going to his room to start writing the script. I sat there on my couch that I love, listening to the sounds of my boys happily preoccupied in their rooms. Home. My favorite time of day might have come a little later that day, but there it was. I sat and breathed deeply, enjoying my moment of peace, security, and serenity.