What a treat! I had the absolute pleasure of speaking with Kate of Aspie from Maine yesterday to do an interview regarding my book, Slip. We had a lovely conversation, and Kate asked some thought-provoking questions. She also wrote an insightful and thoughtful review of the book in addition to discussing my responses to her questions. Thank you, Kate!

Click here to read the review and interview!

I was going to write a hopeful post, an “it-will-be-okay” post, about how even though Nigel had a seizure last week, and I discovered him postictal, face down in a huge pile of Lego, bleeding from several cuts on his forehead, nose, and neck, he told me the next day that he thought he understood what is meant by having an aura, the feelings or sensations one experiences immediately prior to having a seizure, that he was starting to recognize his, that it’s a “woozy” feeling. I was going to write a post that at least there was that, that maybe he could learn to use his aura, as some with epilepsy do, to circumvent the seizures, not just because they are scary to witness and he gets cuts on his face, but because, according to research, the more seizures the body has, the more the body gets used to having them, but also because they can be fatal, and that terrifies me.  I was going to write that post and then just a few days later he had another seizure, a massive one I witnessed from the beginning, and as it was ending he stopped breathing a few times, and I should have called 911 but I felt paralyzed, focused on willing my son to breathe, telling him to, in his unconscious, agonized state, and he did and I collapsed in relief, shaking, shaking, too shell shocked to cry, not daring to wonder what if.

The next day I asked him if he had experienced the “woozy” aura and not surprisingly he said no. I know it takes a long time and lots of practice to develop it, but the fact is I don’t think he would have had a chance with a seizure like that, which is how all of his are. Big. Bad. And although I often try to be Zen-like about the seizures I find that I undeniably have PTSD and my heart involuntarily starts racing with terror every time his eyes roll or his hands stiffen or he makes an unintelligible vocalization and of course whenever I’m out of the room and I hear a thud or a series of thumps, and I curse the seizures, hate them hate them hate them, even though I’m all too familiar with the New Age tenet What you resist you draw to you, but how could I not resist them? How?

I am thrilled to announce that I have been published in an awesome new book: Wit and Wisdom from the Parents of Special Needs Kids, an anthology of essays written by over forty bloggers, and edited by Lynn Hudoba.  It’s a fast-reading, highly enjoyable book, one that fellow parents will be nodding along to and laughing alongside. Most of all, it’s a hope-filled trove of inspiring stories and insight from over forty bloggers – all in one place!

P.S. Those of my readers from TeenAutism will be pleased to know that my featured essay, “The Little Things,” includes a never-before-published Nigelism! It’s a good one! Click here to order your copy of Wit and Wisdom from the Parents of Special Needs Kids.

I was leaving for work the other morning, walking to my car parked in the driveway, when I heard something that instantly got my attention. It was coming from the bus stop for the middle school kids, and it sounded like an argument or fight. I listened a few more seconds and realized that one kid was loudly “performing” while the other kids stood in a semi-circle around him, laughing, ganging up on him. My PTSD kicked in, my heart raced, and my blood ran cold. Nigel had left several minutes earlier, riding his bike the opposite direction to the high school. I knew that the situation at the bus stop had nothing to do with him. But my body remembered how it felt, four years ago, to know that it had everything to do with my son. That he didn’t know how to interact with his peers so he “performed” for them, acting out a scene from a movie. They laughed at him, and he became agitated and angry, which made them laugh more. As a parent, it was horrible to witness. My instinct, four years later, was still the same as when it was my own child being targeted. I started to go over there to lecture them about not laughing at someone who communicates differently. But after I took a few steps, I realized that the kids at the bus stop were not doing what had been done to Nigel four years ago. The louder kid was trying to engage them in playing along, and they were interacting, laughing together. It wasn’t what I thought it was. It was okay. And, still shaking with adrenaline, I turned and walked back to my car and drove to work, trying to contain the sobs in my chest.

*

We recently had Nigel’s annual IEP meeting. It was a big one, now that he’s in his junior year of high school. Yes, you read that right – junior year. We’re in heavy transition mode, moving into the “later phase” of transition as described in The Autism Transition Guide: Planning the Journey from School to Adult Life (which is a fantastic resource). We’re almost there, people, and I’m trying not to freak out about it. This is what we spend all our time, energy, and effort preparing for. This is where the money meets the mouth. The moment of truth. And we’ve got just two school years left. There’s a lot to do in little time. The “good” news is that by now, most of Nigel’s IEP goals are executive function-based, as opposed to academic or even social. His social skills class has dropped down to twice a month, and I wondered if it was enough, wondered if his social interaction at school had really progressed to such a low-need level to not even necessitate an IEP goal, even though I agreed that the executive function goals are paramount at this stage of the game.

This past Friday was the high school’s Back to School Open House, and Nigel argued that he didn’t want to go. “I spent over six hours there today!” It was the end of a long week, and I didn’t want to go either. But it’s incredibly important for special needs parents to attend Back to School Night, especially when your child is older and has multiple teachers. It’s a great opportunity to touch base with those who attended the IEP meeting and to make contact with those who didn’t. And I remembered that in previous years it had been awkward discussing Nigel’s strengths and weaknesses with him standing in the classroom. So I agreed that he didn’t have to go, and I went to the high school alone, picked up his schedule and a map, and began wandering the halls to find his classes.

I have a pretty standard thing that I say to his regular ed teachers, which is basically to introduce myself, make sure they are aware that Nigel has an IEP for autism, and tell them that sometimes, due to his autism, Nigel will answer a question or make a comment and get off-topic with an idea that he’s passionate about. I tell them that usually a gentle redirect, to remind him of the topic, will suffice. I tell them that if they have any questions or concerns to feel free to contact me, and I thank them for their work with my son. You’ve got to keep it short and sweet because there are other parents waiting in line to do the same thing. But it’s so important to put in the face time, and so worth it.

Finally, I found each of his classrooms. The teachers who had attended the IEP meeting were genuinely excited to see me and tell me how well Nigel was doing and that they were very happy to have him in their class. That comment alone, which I usually only hear from his special education coordinator and social skills moderator, was enough to generate a lump in my throat. But then, when I said my spiel about him sometimes getting off-topic in class discussions, not one, not two, but all of his teachers got a slightly confused look on their faces and said, “Everything he says is right on topic.” For a split second I thought, my kid? Really? They’re not confusing him with someone else? And then I casually smiled and said, “Great! I’m glad to hear that’s not an issue for him anymore!” But inside I was vacillating between wanting to do cartwheels and trying not to cry from sheer joy. He’s on topic! All the time! They’re very happy to have him in their class! That’s four years of social skills classes at work – that’s what that is. And fourteen years of speech therapy. And nearly seventeen years of believing that it would be possible, that one day he would fit in with his peers, still different, but greatly appreciated for who he is.

*

Some time ago, my wise friend Elizabeth posed this question: “If you could go back, what would you have told yourself right after receiving your child’s diagnosis?” My first instinct was that I would tell my twenty-six-year-old self, who had a seventeen-month-old and a just-turned three-year-old, non-verbal child with autism, “It will be okay.” I had other things I wanted to say, like “Ask for help,” but mostly, I just wanted my younger, scared self to know that I would get through it. And yes, almost fourteen years later, there are still plenty of concerns for Nigel’s future and many stressful things I need to do to facilitate everything. But for the most part, it’s okay now. Wait – do I really hear myself daring to say those far-reaching words? Have we truly arrived? Part of me says that time will tell. But another part of me says that no matter what happens, if he’s gainfully employed or living independently in adulthood or not, it will still be okay. It is now, and it will be. That much I know. That much I still believe.

“It is one of the beautiful compensations of this life that no one can sincerely try to help another without helping himself.” – Charles Dudley

“On a spiritual level you will experience a different mode altogether. Your attention should turn to others and their needs; find ways to be of help and give time and energy to worthwhile causes. You must lighten your burden of questions and doubts and the best way to do so is by directing your attention to another direction, away from yourself.” – from my numerology report for 2011

A few years ago I was into numerology – numbers don’t lie, and all that. I’m not sure that I really believed all of it, but I did notice some uncanny coincidences in the reports I would find online and where I was in the epicycles. That part definitely resonated with me. At the time, Tarot.com offered numerology reports two years in advance, and I downloaded my report for 2011 long before the last decade was over. I read it and filed it away, and then around February I cleaned out some files and found it.

At first, the part about helping others perplexed me – selfishly I thought, if anyone needed help, I did. I knew I was depressed and, after over a decade of single parenting, I feared a complete breakdown. I stopped blogging and spent a lot of time watching X Files episodes with Aidan. And then my dad’s cancer accelerated, and with my siblings, I took care of him in his last weeks, days, hours, and minutes, and  I thought, Ah. This is what the numerology report meant by helping others. I returned home a different person.

But I still didn’t feel like that was it, and my attention turned inward again as I grieved for my father and tried not to think about the fact that my 15-year-old son had decided to live with his dad, 700 miles away. Shortly after his birthday, Aidan flew back here with Nigel, and we enjoyed a short, four-day visit with him. I took some time off work, and we went to Crater Lake, where my mom is an Interpretive Ranger. We spent time with my sister, my niece and nephew, and had dinner with my aunt and uncle. We watched some more X Files and Aidan showed me the ropes with my new iPod. And all too soon I found myself driving him to the airport, going through the motions of waiting in line to check his bags and get my pass to accompany him to the gate. But because he is now 15, they would not give me a gate pass. “He just turned 15 last week!” I pointed out, wielding his passport. “He’s my son, and I’m not going to see him for over two months!” I pleaded, aware of the fact that I was probably embarrassing him. I knew that he would be fine on his own, but I really wanted to wait with him at the gate. They spouted off something about policy, and I turned away, willing myself not to cry. I took a deep breath and motioned Aidan over to some seats near the line waiting to go through security. We sat down and I told him that I had a letter for him that I had wanted to give him at the gate before he boarded, but that I would have to give to him now. I handed it to him, and he opted to read it right then, so I sat there as he read the words I had so carefully chosen to tell him how much I loved him, that I unreservedly supported him in his decision, and that if he ever changed his mind I would be so happy to have him back. He thanked me and hugged me, and then we waited in line, my heart in my throat, trying not to be angry at the airport personnel. When it was time, I hugged him tightly, breathed in his scent, told him I loved him, and kissed him at least five times. “I love you, Mom,” he said as I backed away, trying to smile.

I watched him as he went up to the counters, put his jacket and shoes in the gray plastic trays, took the full-size X-Box game console out of his roller as instructed by security, walked through, and efficiently repacked everything on the other side. He’s been in airports more times by age 15 than I had been by age 30. He’s a pro. I watched him sling his messenger bag across his chest, check the monitor to see which gate to go to, pull up the handle on his roller, and head off. I was so sad – yet so very proud – all in the same moment. I knew I had helped him by letting him go with love.

Back at the house, Nigel and I had dinner together, just the two of us at the table. We talked about how strange it would be with Aidan gone. We watched a movie together, and then Nigel opted to build some Lego. I wasn’t sure what to do with myself. I sat down on the couch with a National Geographic magazine, and, as if on cue, the phone rang. It was one of my good friends, another long-term single mom, who had been out of work for several months. She, with her daughter, had been living about three hours away in a larger city, trying to find work. She ended up losing her house and her car and decided to come back to southern Oregon to temporarily stay with friends-of-friends whom she did not know well. It turned out to be a negative environment, so I went to pick them up the next day, and my friend and her 12-year-old daughter came to live with us.

Nigel had been asking me for three years to let him have the much larger “game room” (as we call it), where he keeps his massive Lego collection, for his bedroom, and he was ecstatic to move his things out there so that T’s daughter could have his old room. I moved my desk out of the office and into my bedroom so that T could have the office as her room. Within days of being here she has lined up two job interviews and, through another friend, a car fell into her lap yesterday.  I know she was meant to be here.

I also know that this is more of the help I’m meant to provide for others this year. That’s obvious. But the truth of the matter is – and I have told her this several times – that her being here is helping me just as much as it’s helping her. Nigel is benefiting immensely by having a friend in the house who matches his current emotional age. She’s a sweet and insightful girl who is happy to watch movies with him and patiently listens while he narrates whatever they’re watching.

And then there’s this – I never realized how much I would benefit from having a nurturing adult in the house, after all these years of going it alone. I never realized how much I needed her here until she came. I just wanted to help out a good friend in need. But the fact is that her mere presence has calmed my spirit and “lightened my burden,” just as my numerology report said it would. I suppose it’s a no-brainer that in helping others we help ourselves, but I never knew just how true that is until now.

I woke up this morning, blinking my eyes and stretching, with “Let It Be” running through my mind. You know – the song by The Beatles. I lay there a minute, listening, absorbing, wondering why it was in my head, and then I knew. It was a really big day, and I couldn’t be there for it.

Aidan, my younger son, my baby, is fifteen today. And today is also his first day of high school. Those two things are big enough already, but here’s the piece de resistance – his high school is in Los Angeles, 700 miles away from me. He is fifteen, and he has chosen to live with his father now, a decision that I accept with love.

For nine years (perhaps longer, subconsciously), I knew that this day would come. I remember the summer that he turned six, the first summer that he went for several weeks to visit his dad, who had moved to L.A. from Oregon six months before. Aidan came back to Oregon after the visit confused and angry that he had to leave his dad to come home, that his dad lived far away. At age six, Aidan was not able to identify and verbalize his emotions surrounding this, and he lashed out at me and told me that he didn’t love me and didn’t want to live with me. I knew that he was hurting, and that I was the parent he could take it out on. He was just six years old, and it was the only thing he could do. I ached for him more than myself. And it was then that I knew – one day, he would go.

But I knew for sure last year in September, when he started talking about it in earnest. Not just talking about it, but telling me that he planned to go to high school in L.A., and that his dad was very happy about it. Although supportive, I put off dealing with it emotionally, thinking that things might change, but deep down, I knew. And in January I realized that I had just six months left with my younger son in my daily presence and decided that I needed to focus on him. I alluded to that in my final blog post at Teen Autism, and from then on I spent about five evenings a week with Aidan – playing board games, reading together, talking, or watching movies and X-Files episodes.

And my beautiful, sweet son not only wanted to spend that extra time with me, he made it a priority. He cut down on his X-Box Live time with his buddies in favor of board game nights or movie nights with Mom. And I wasn’t the only recipient of his familial attention. Aidan made it a point to spend extra time with Nigel, really hanging out with him doing the quality time gig, and doing it sincerely. He got down on the floor and built Lego worlds with Nigel, doing something that most teens (himself included) had outgrown years ago. Aidan talked with him about movie ideas and patiently offered suggestions. Without verbalizing it (at least not when I was around), he seemed to realize that the longest he and Nigel had ever been apart was five days while Nigel was at Scout camp. I wasn’t the only one who would be affected by this big change, and Aidan knew it.

But that’s the kind of person he is – empathetic, patient, intuitive, proactive. Like his brother, he’s a different sort of teen, but in different ways. He couldn’t care less about sports, but he loves to bodysurf. He reads voraciously, mostly science fiction, but also National Geographic, J.R.R. Tolkien, Get Fuzzy, and Game Informer. He’s not into any current music – whatsoever. He can’t stand most of what his peers listen to. Aidan’s into old rock (CCR and AC/DC) and classic metal (Black Sabbath and Dio). He even likes Journey and still loves Bob Marley. When I mentioned that today was his “Golden Birthday,” he didn’t know what that meant and didn’t care. And I love that. I love his hair and his clothes. I love his mind and his heart. I love everything about him, even his rigid eating habits and his nonchalance about his grades.

This is the baby who slept in my bed for nine months. This is the three-year-old who wasn’t talking and needed speech therapy. This is the seven-year-old who said he feels like he has two lives. This is the ten-year-old who told me he’s always felt like the older brother. This is the teenager who needs the space to carve out his own identity. And this is the same six-year-old missing his father.

And so, I am letting go and letting it be. That’s what the past year has been about – preparing for this moment. For a while I tried to fool myself by pretending that he’s going away to college four years early, but I don’t need to do that anymore. I miss him, of course, terribly so. But he is doing what I have always known he would need to do, and I honor that. He is fifteen, and he is on his path. He always has been.

Happy Birthday, Aidan, my amazing son. I am so happy to be your mom and so blessed to have you in my life. I love you more than words could ever say.

at a castle in Hungary with my sister, Anastasia, and our dad, 2007

*

I was filling out a medical form today, doing the family history section, and for the first time since his death almost four months ago, I had to fill in the “age-of-death” box for my father. Sixty-seven. I know there are people, children, unfortunately, whose parents die at considerably younger ages than that, but the very sad fact is that I’d hoped – expected – to have about twenty-five more years with him.

I tell myself how grateful I should be that I had the time with him that I did, that, in my adulthood, we developed a very positive relationship. And I am grateful. Because some people don’t even have that. I appreciate every moment I had with him, every memory that I hope will linger the rest of my life.

But that doesn’t make me miss him any less. That doesn’t make the grief go away, the wishing he was still here.  Wishing he could read the new book I’m writing. Wishing I could pick up the phone and talk to him, hear about his most recent international trip, tell him I love him.

I take a break, go make and eat my dinner. I’m by myself while my boys are visiting their dad, so I read this month’s National Geographic while I eat. There’s an article on Myanmar, a country Dad loved. He’d been there twice I think, perhaps more. I look around my home and see so many lovely international souvenirs that I inherited from him – the silk rugs from China (where I watched him diplomatically haggle), beaded tapestries from India and Thailand, an embroidered pillow from Greece, an alpaca chullo hat from Peru. I remember climbing the Eiffel Tower with him on one trip and, on a later trip, watching him try not to cry as he embraced relatives in Slovakia whom he hadn’t seen for forty years.

I remember Dad taking my brother and me to Dodger games, how he held me up over the waves at Laguna Beach, how he sang so beautifully at church every Sunday, how he read bedtime stories to us. I remember the day that he taught me to ride a bike, jogging along beside me, letting go when he knew I was ready. And then there was the year and a half that he babysat his grandsons for two afternoons every week, because Nigel had been rejected by various daycares due to his autism.  There are all the trips, all the phone calls, the plays Dad and I saw together. All those memories add up to so much more than a number on a form.

I think about how much that little box on the medical form really holds. Not just the things he’d done with his life and the places he’d been, but the love. So much love. “67” in a box that says “age of death” above it only says that he didn’t live a very long life. It doesn’t say how much life was in those 67 years. And if the box took up the whole page it still wouldn’t be big enough.

*

Grief, I’ve come to learn, cannot be confined to a time period or a schedule. It’s a lot like love in that way, which continues on long after death. And, like life, it won’t fit into a little box with a number scrawled inside it. It’s big and it’s full, consuming and unapologetic. I’m making my way through it, holding onto the memories, feeling the love.

“I just called to remind you about the medication, because it’ll be out in five days.”

That was Nigel calling me, not the other way around. It was not I reminding him about his meds, but him reminding me. And not waiting until they were completely gone, either. Looking ahead, noticing that he’d be out in a few days, and doing something about it. Planning. Yes, really. I was so pleasantly surprised, so stunned, that there was a definite delay in my response as I took in the magnitude of what he had just done. He noticed, he thought ahead, he called me.

Those of you (probably most of you) who had read my previous blog posts (here’s one) about my son’s lack of executive function know how much this area of his development has plagued me. Not having executive function impairs his organizational skills (not only his notebook and living space, but also his thoughts and ideas), his ability to plan out assignments, projects, packing (for a trip), and chores (such room cleaning), his ability to self-regulate (including behavior and emotions), and various other areas. Executive function is a big indicator of whether our kids will have the ability to be semi-independent as adults. Last year, during his first year of high school, I got so worried about making sure that his executive function would develop that I planned to move out of state so he could attend a special school for students with autism. I figured that if it hadn’t started yet, it wouldn’t happen on its own, even with all of my untrained, inadequate attempts. But I wasn’t able to sell my house, so we didn’t move. And he’s comfortable at his current school, so I’m not going to uproot him, even if I could sell my house. In fact, he’s really happy at his school. And after all we’ve been through, that’s worth everything. But Nigel has only two years left of high school, so it’s crucial for his executive function to start happening.

And it is. That one phone call from him has opened a ton of doors, mostly because it reminded me of his potential. Years ago, before he started talking, Nigel somehow taught himself to read at the age of three and a half. We figured, with all the books we’d read to him, that he’d studied his wooden letter blocks enough to recognize the letters from the words in his books. So he started spelling with his blocks to communicate. I remember the first time I realized this. I had walked into the living room and saw him sitting in front of four blocks, as if waiting. When I looked closely at them, lined up in front of him, my spine tingled. He had spelled “WOLF.” I asked him if he wanted to watch Peter and the Wolf, one of his Disney videos. He didn’t answer, because he could not, but he immediately got up and sat on the couch, expectantly looking at the TV. And I thought, My son is a genius. He can’t talk, but he figured out a way to communicate. And he didn’t start talking for another two years. Expressive verbal communication was very difficult for Nigel to develop, but, over time and with a lot of therapy, he did. Likewise, executive function has been very difficult for Nigel to develop. But he is. All of my untrained, inadequate attempts while homeschooling him. All of the repetitive trials by his special education teachers. His own maturation. It’s all been accumulating, all gradually coming together. I see it happening, like little words spelled out with wooden blocks, and my head is swimming with possibilities.

I praised him for remembering to call, for thinking ahead. I didn’t go overboard, because you can’t make a big deal out of these things in front of him, you know; you have to act like he’s been doing this all along. I assured him that I had picked up the refills for his two medications and that first thing in the morning I would be FedExing them to him at his dad’s house, 700 miles away. We’d done this in previous summers during his visits there. I had remembered and everything was ready to go.

But this year, I wasn’t the only one who remembered. My teenage son is developing executive function. And maybe I’m biased, but I still think he’s a genius.

I’m thrilled to announce that my novel, Slip, is now available in the following ebook formats, priced at 2.99! Click the name of each format to be taken to the page for it:

Kindle

Nook

Smashwords

Slip is also available in regular print/paperback. Click here for more information. You can also click here and scroll down for a sneak peak at my next book that I’m currently working on, scheduled to be published next year!

Thanks for reading!

And so when the phone rang and a young man came on the line saying, “I’d like to get one of your catalogs,” I thought nothing of it. Those are usually the easiest calls, so I said sure and asked for his name and address.

And that’s when I knew that this would be no ordinary catalog request.

He verbally stumbled several times just giving me his name, and midway through his address the poor guy halted, apologizing, berating himself (“I should know my own address; I should know my own address”). I assured him it was okay, to take his time, because I knew. I got that tingling at the back of my neck; I knew that I was speaking with a young man who had special needs of some sort, perhaps autism, perhaps not. And he was requesting a catalog of self-help CDs.

He finished giving me his address, and I thanked him, telling him when he should receive his catalog, expecting him to hang up then. But he didn’t. He said something that made my heart ache.

“Are you hiring any male phone operators?”

Then, in the seconds that I mentally formulated a response, I heard his mother in the background, gently correcting him. “Patrick, that’s not what you called for.”

My tears came then, because in that instant I realized that she was me and I was her. How many times have I stood by the phone, coaching Nigel through calls in the exact same way? Teaching him phone etiquette? How many times? Will I be in her shoes ten years from now, with my adult son doing his damnedest to try to be independent, trying to get a job – any job – any way he can? I wanted to reach through the phone, to hug her, to tell her I know. To tell her I’m there with her.

I took in a quick, empathic breath and told Patrick that I’m sure he would be a wonderful phone operator, but he was in Texas and we were in Oregon. He said, with sincerity and grace, “That’s okay. But I’m really glad that you have a job. Because it’s hard to find jobs these days, so I’m happy for you that you have one.”

I about lost it at that point – his candor, his gentleness, was overwhelming. I thanked him and wished him the best on his job hunt. I hung up the phone and sat there at my desk, at my job that I fantasize about leaving, and thought about all the Patricks who are just trying to get any job, who with the help of their loving mothers are requesting self-help catalogs, who for all the world wish they could be in my shoes, have a job they can be proud of, and who are genuinely happy for those that do. I was deeply moved, and profoundly appreciative.

It may not have been what he called for, but I’m so glad he did.