Not Alone

Most of the time, we like to be right. We like that feeling of validation when something goes the way we thought it would. But there are, of course, times when our intuition kicks in, we get a hunch, and it’s not a good one. We hope like hell that we’re wrong.

I wrote recently that I’d been noticing what appeared to be postictal signs from Neil, that I thought he might have some seizure activity going on even though I hadn’t witnessed it. Unfortunately I was right. He had a seizure on New Year’s Eve while visiting his father. What timing, right? Way for 2010 to get in one last jab on its way out.  Anyway, Neil’s okay; apparently it was milder than the first one. But still – I so wish I had been wrong. A new year began just a few minutes after I received the call from my ex-husband, and I paced the hallways of my home, crying and swearing at autism for providing yet another issue to continue worrying about. Sobbing about how it never ends. Wishing, again, that I had been wrong.

But the next day, somehow, I felt better. It was a beautiful, clear New Year’s Day (a clean slate!), and I felt determined not to let the event of the previous night get me down. That evening I picked up my boys from the airport (they flew alone again!) and we drove home. It was so good to have them with me, to hug them (even though one can’t really hug back), and to feel the peace that their presence brings me.

I also felt better because I know that I’m not alone in my experiences. I have been blogging for almost three years now, and it has been my lifeline. I cannot put into words how much I have benefited from all the encouragement and advice I have received from readers and fellow bloggers out there. That’s right, from you. You reading this right now, my friends. You have offered much-needed recommendations when I was searching and deciding about medication. You have celebrated Neil’s accomplishments with me and lauded his progress. And you have empathized; you have supported me when I worried. There are so many more posts I could link to. Through your beautiful comments and your generous emails you have buoyed me up and helped me along this leg of the journey. My gratitude is boundless.

And so, I’m very sorry to say that I’m at a point where I need to stop blogging. This post is my swan song for TeenAutism.com. Basically, as much as I’ve loved blogging, my energy – what little there is – is needed elsewhere in my life. Adam will soon be doing something that will change his life, and Neil’s, and mine. But he is fourteen, and that is his story to tell, should he choose to. He deserves so much more of my energy than I have been able to give him over the years, so I want to focus on him now as much as I can. Neil, of course, will continue to consume a lot of my energy, and whatever’s leftover I hope to channel into some more fiction writing.

I wish I had more time and energy so that I could continue to blog – to do this thing I have enjoyed immensely. I feel like I’m leaving so much unfinished! For example, I’d wanted to post a book review of Late, Lost, and Unprepared: A Parents’ Guide to Helping Children with Executive Functioning. I’m not even half way through it, but I can already tell that it’s a fantastic resource, and I highly recommend it. Another thing I wanted to do was get back to the “What It’s Like” series that I started a while ago. I wanted to hit up my wonderful extended family members for interviews about what it’s like to have a nephew and grandchild with autism. I wanted to talk more with Adam about what it’s like to have a brother with autism, and write about it. I wanted to do posts called “What It’s Like to Have an Autistic Child” and even “What It’s Like to Have Autism,” from Neil’s viewpoint. Then I thought about it, and I realized that it’s all here, contained in the existing posts of this website. The social challenges, the sensory issues, the bullying, the obsessive thoughts, the medication and therapy, and much more.

It’s all here.

But there are so many unanswered questions about Neil as he closes in on adulthood – will he drive, will he continue to have seizures, will he be able to have a job, live independently? How will he be as an adult? Some of that I might mention on Facebook periodically, if you’d like to find me there. I’ll also keep this site up. This website has become the resource that I was looking for in 2008 as Neil started his teen years and I searched desperately for information. Not finding much, I decided to create TeenAutism.com. I figure there will be many more parents Googling “autism in the teen years,” and I’d be honored if they might consider any of my 400+ posts to be a resource for them. I’m also touched by the fact that many parents find this site by searching the phrase “so proud of my son blog.” Because I am – of both of them.

My friends, I want to thank you once again for being there, for being part of our lives, for joining us on the journey. I appreciate you more than I can say. I leave you now with one last Neilism:

The Scene: Interior of suburban family home. A mother enters the bedroom of her teenage son who has autism. She is coming to say goodnight to him, and he is in his bed, expecting her. As is their nightly ritual, she shuts off the bedroom light and comes over to the side of his bed to kiss his forehead and tell him she loves him. As she leans over and kisses him, he holds out his arm and reaches over to turn on the small light on the headboard of his bed.

Teen son (softly): I can’t see you. Let’s do it again so I can feel like I’m not alone.

Mother (with lump in throat): Oh, honey. You’re not alone. You’ll never be alone.

Commencement

When I started this blog in 2008, I had this vision of the post I would write when Neil graduated from high school. Obviously, I would write about how incredibly proud I was of him, how much he had taught me through the years, how consuming my love was for him, and how hopeful I was for his future. And I would post a short video of him receiving his diploma. I imagined that one of my relatives would be filming so that I could watch my son, who had always tried so hard, harder than anyone I know, and struggled so fiercely. I envisioned that the person filming would film me for a few seconds standing there, crying as I watched him, and when I noticed that they were filming me I would hide my face and wave them away, saying, “Film him, not me!” And the person would zoom in and film Neil, focusing on his beautiful, serious face, self-aware of his accomplishments and determined about his future.

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All his life Neil has told me, whether through behavior or words and often both, what he needed. And I have learned to listen (and be attentive). He would tell me, by screaming and bolting, that a sound or an environment was too loud, too overwhelming, and he had to get out of there. He would tell me by rubbing his lips until all the skin around his mouth was red and cracked that his anxiety level was too high. And later, when he had the words to do so, he would beg me to homeschool him because mainstreaming was too torturous with the bullying he endured. After a year and a half of homeschooling, he would tell me that he wanted to try some medication that would help him to regulate his behavior so that he could go back to regular school, because he never stopped trying. A year later, he would tell me that he felt he had learned to regulate his behavior himself and that he no longer needed the medication. And he was right.

Two weeks ago, after a discussion about the dismal state of his grades and the fact that he is not aware of any executive function skills class that he is supposed to be in, he told me that he thinks he needs to get a modified diploma. His anxiety level has been so high that he has been pulling out his hair incessantly for weeks. He feels completely overwhelmed. And he is becoming aware of his emotional delay. Just a few weeks ago, at the grocery store, out of the blue he said, “I think the reason that I still like stuffed animals and Lego is because in my heart I’m like someone younger than myself.” I tried not to cry at his brave, self-aware statement and told him that I think he’s right, that his teachers and therapists have documented it over the years. I gently explained to him that at first they assessed him to have a six-year emotional delay, but somewhere along the way he gained a year, and so at age sixteen, he is like an eleven-year-old. “Yeah,” he said. I could see the wheels turning as he processed this.

Here’s Neil at age eleven. How could I possibly expect this little boy to function as a high school sophomore? How could I think that the workload wouldn’t overwhelm him? That even though he was intelligent enough to understand it, he couldn’t handle the amount of it? Along with all of the social challenges and sensory issues he still battles on a constant basis? How could I think that the extensive support and assistance he receives both in and out of school would be enough? It’s not just about his lack of executive functioning. It’s about emotional maturity. How could I expect him to receive a regular diploma? That he would somehow figure it all out and navigate everything when he’s emotionally an eleven-year-old? How?

I’ll tell you how: Dreams. My son taught himself to read at age 3 ½, before he could even talk, and so I dared to dream. But don’t worry – I’m not throwing my dreams out the proverbial window just because he’ll be getting a modified diploma, because I now accept that that’s what he needs. I’ll still have dreams for my son, but those dreams are now realistically calibrated. What’s the problem with getting a modified diploma? It limits post-secondary educational opportunities, but with time and support perhaps in a few years we will be looking up online college degrees. And while I know that extended high school is a possibility for some students in similar situations, it’s not a good option for Neil. He’s comfortable at his high school, but he doesn’t want to be there any longer than necessary. He knows that option won’t work for him, and I agree.

No sooner had I indicated my support for his need to get on the modified diploma plan than he stopped pulling out his hair. I told him that it wouldn’t go into effect until everything had been written into his IEP at the upcoming meeting, and he understood. His relief, and his appreciation, was palpable. I had given him the autonomy to make a decision about his life and the respect and esteem that goes along with doing so. He knows himself. He knows what he needs. He always has.

*

For every bit of Neil’s progress over the years, I am truly grateful, and I am so proud of my son. But in all honesty it was painful for me to write this post. To know that after everything we’ve been through and all he’s accomplished, this is the best we can do. Mostly, it was painful for me to let go of a dream. Oh, I can say that I’ve “calibrated” my dream, but in reality, I had to let it go. And that’s okay. Because I’ve learned that my dreams for him are not necessarily his dreams for himself. And the fact is, when I look ahead to his graduation two and a half years from now, the particulars of his diploma will be different, but nothing else will. Someone will still be videoing it, I’ll still be crying, and I’ll still feel all the things that I would have felt had he received a regular diploma. I’m certain of that. And I’m certain that Neil’s beautiful, serious face will still reflect the awareness of his accomplishments, and his determination for the future.

The Re Week

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This particular week is my favorite time of year – the week between Christmas and New Year’s Day. I call it The ‘Re’ Week because I spend a lot of time doing things that start with ‘re’: review, reflect, and re-evaluate. (Those of us in the retail industry also know this week as the week of returns, but that’s not what this post is about.)

If you’re a friend or family member, or if you’ve been reading this blog a while, you know that I’m a very introverted person. I value time with the people in my life, of course, but I also value time alone, and as an introvert, I need it to recharge. Three times a week I take a fitness walk on a bike and pedestrian path that runs close to our little town, and true to my nature, I usually go alone. It’s my processing time – 45 minutes of pounding the pavement, pondering questions or issues about my life, all the while getting fresh air and a light endorphin rush. I need this time.

Often while I’m walking, cyclists or other pedestrians will pass by me on this well-loved rural path, and I smile and say hello. But one day about a month ago, I had gotten to my half-way turnaround point and realized that I hadn’t seen anyone else out there. It seemed eerie to be the only one on that stretch of the path, even though I enjoyed the solitude. I turned around to head back, and about twenty minutes later I neared my starting point, still having seen no one. But then, about five yards from the end of my walk, I saw her. It was a large female wild turkey, walking on the dirt beside the asphalt path, headed in my direction. She was about three feet tall (or long) and stunningly beautiful. I literally gasped. I’ve heard over the years that the turkey was close to being chosen as our national bird, and that we should be “glad” that the more majestic eagle won out. But let me tell you, as I slowed down in the presence of that amazing creature, all I could think was that the turkey is every bit as impressive as the eagle. I hear people call someone a “turkey” as a deprecating word, something a little gentler than “fool” or “jerk.” And now, having seen one and looked into her eyes, I’ll never think of the word that way again.

I slowed down, in awe, and watched her as she watched me. She kept slowly walking toward me, showing no fear. At first I thought perhaps she was injured, but she seemed to be walking fine, just slowly and purposefully. I swear she looked right into my eyes for a moment as we passed by each other. Then I turned my head and watched as she walked off into the brush.

Intrigued by this encounter, when I got home I tried to find out the symbolism of turkeys, especially hens. I just couldn’t get past the fact that there was no one else on the path that afternoon, and I truly believed that the turkey was some sort of sign for me. I found this great website and discovered that although the turkey (not surprisingly) is a symbol of abundance, it also symbolizes awareness, generosity, and sacrifice. The turkey is a sign of cycles, preparation, and new beginnings. To quote the site: “When a turkey visits us it is a sign that we must be mindful of our blessings [and] a message to express our strength and brilliance…and reveal our true selves.”

And it’s the perfect message for my annual “re” time. I’ll be thinking of the turkey this week as I reflect and review, looking forward to a New Year of greater awareness and a few other things on that list (perhaps even abundance).

Happy New Year, my friends! May it be filled with many blessings and special memories.

*photo courtesy of Wikipedia

Hope on a River

“Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: You don’t give up.”  – Anne Lamott

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Sometimes I think that as much as I have defined my hopes over the years, it is they that have defined me. Hope is the thing that gets us from one day to the next. And those days turn into weeks and months and years, until finally we look back, exhausted but still hopeful, and see where those hopes have taken us.

My hopes have certainly changed over the years, evolving and developing as my sons have. I remember hoping when Neil was six years old and learning to talk that someday we could have a conversation. I remember hoping that someday he would stop screaming and bolting away from me in parking lots or other public areas when a noise startled him. And I remember hoping, as he started talking more and bolting less, that someday I could take him on an international trip with me. That he would be safe, and that he might even enjoy it. Because I love to travel – my whole family does – and someday I wanted to share that with both of my sons. In the grand scheme of things, in all of the hopes that I’ve had and still have for my sons, I can assure you that international travel was low on the totem pole. But still, it was there.

Last month, after a year of planning, both of my sons (one with autism, one without) accompanied me to Thailand, where we met up with my father on his annual Thanksgiving in Thailand trip. We had purchased our plane tickets back in February, timing our departure with the school district’s break for the US holiday. What we didn’t know was that our arrival date coincided with the festival of Loi Krathong (pronounced loy krah-tong), a Thai holiday that takes place on the evening of the full moon of the twelfth month in the traditional Thai lunar calendar. In the western calendar this usually falls in November. And this year, it just happened to be on the day that we arrived.

It was night when we flew into Bangkok and checked into our hotel. We slept well and had continental breakfast before heading out for a stroll that morning. Everywhere we walked, people sat outside making and selling krathongs – handle-less baskets traditionally crafted from intricately folded banana leaves and loaded with flowers, incense sticks, candles, and other offerings. They are beautiful in and of themselves, but it’s what they symbolize that really hit home with me. The krathongs are released into waterways across Thailand as offerings of hope – an opportunity to wash away the past year’s misfortunes and let go of resentment or fear, so that one can start fresh, with hope for good fortune in the future. A festival about hope! How wonderful is that?

That night, after a lovely outdoor international banquet at our riverfront hotel, we watched as the locals picked up their krathongs and walked down to the dock when it was dark. There they stood, holding their krathongs in front of them, eyes closed and heads bowed for a moment as they meditated. Then they placed their krathongs in the river and watched them float away. Parents held their children by the hand as they walked to the dock, bent down, and, it appeared, instructed them about what to think of before they released their krathongs into the river. I watched in wonder; I was so moved by this beautiful tradition.

Then it was our turn. The hotel had provided pretty krathongs for its guests, and we each picked one out, lit our candles, and slowly walked to the dock. I thought about all the things I needed to let go of in my life – fear, resentment, stress, sadness. I thought about all the hopes and dreams I have for my children and myself and the fact that at that moment, where we stood there on the dock of a river in Thailand, one of my hopes had come to fruition. We were there; we had made it. I released my krathong, and then I looked out across the river and saw dozens of tiny candle flames floating down it, bobbing along in the water. And I watched as my family’s krathongs floated away together and bobbed along with the rest of them.

The remainder of our trip was just as magical. We had our challenges, of course, as my autistic son (at 16) still has a tendency to wander and has a very limited palate. But overall we were blessed with safe travels and wonderful memories. And hope that continues to evolve.

The Fun and the Not Fun

It’s that weird time of year – too busy to make sure my head is on straight, but enjoying fun family traditions at the same time. For about four years when the boys were younger we used to go up into the mountains surrounding our valley and cut down our own Christmas tree. I LOVED doing that, like Little House on the Prairie. We would obtain a tree-cutting permit, pack a picnic lunch, and drive up into the mountains, hike around in the snow, pick out our tree, saw it down and tie it to the roof of the car. Then we’d drive back home, bring it inside, and decorate it while listening to Christmas music. About eight years ago, on our way back down from the mountains, we slid on some hard-packed snow and nearly collided with another car as we headed toward the edge of the road. I don’t even want to think about what would have happened if our car hadn’t stopped – inches from the other car, and inches from the edge of a scary ravine. That did it for me. No more getting the Christmas tree in the mountains.

So the next year, oddly enough, I started seeing signs for a local U-Cut Christmas Tree Farm, and it turned out to be in a lovely rural area just seven minutes from our house! I was so excited – all the fun of choosing and cutting down your own Christmas tree without the danger of driving off the edge of a snow-packed mountain road! (I was also excited that I didn’t have to plan and make a picnic lunch, but that’s not really worth mentioning.Thus began our current tradition of going to the charming U-Cut farm mere minutes from our home, in the foothills of southern Oregon. We sleep in on Saturday morning, have brunch, and then off we go to pick out our tree. Last year Neil did the cutting, so this year Adam wants to. He picks out a gorgeous specimen, and Neil gets the sawing started for him, about an inch into the trunk. I pull out my camera and Neil retorts, “There’s no need to document the strain of sawing the tree,” (!) at which point I suggest that Adam take over.

After ten minutes of valiant effort, Adam successfully cuts down the tree and poses for one of my favorite shots of him, ever:

We get home and Neil elects to put his tired, grouchy self in bed for a nap (more on that in a minute). Adam helps me get the tree in the stand, and we notice that it is the largest we’ve ever had – the tallest and the fullest. We cut a little off the bottom and the top, get it upright, sweep the surrounding area (at which point we discover that Adam had stepped in dog crap at the U-Cut Farm), and clean everything up. Finally, we put on the Christmas music, and I string the lights while Adam plays with the ornaments.

Since the boys were toddlers we’ve had the same star on top of our Christmas tree – an impressive 16-point tin star with holes punched in it for the light to shine through. I think it had been made in Mexico, and it was so pretty. But last year it just fell apart and could no longer be used. So this year I had to get something really special to replace it. Something I knew that the boys would love. See there? That green glow at the top of the tree?

Yeah, that’s right. I got the Yoda Tree Topper.

We save some ornaments for Neil to hang, and I get him out of bed after two hours, not wanting him to nap too long. Here’s the thing: I think something’s going on with him lately, like, possible seizure activity. At first I thought it was jetlag, but we’ve been back for two weeks, and there have been other signs, some that appear to be postictal. Ironically, the week before I noticed anything, we had already gone to the neurologist’s office at the request of Neil’s regular doctor as a follow-up to his major seizure in June. And so when the neurologist suggested doing both an MRI and an EEG, at first I thought Fine, we’ll just do it, even though I didn’t think it was necessary. But now I do. Something’s going on, and it’s not just residual jetlag. And it just so happens that his tests are scheduled for next week.

The staying up with him next Thursday night for the EEG? Not fun. The worrying about what’s going on in his brain? So not fun. But I do feel fortunate that the appointments had already been made before I started noticing stuff – an example of things coming together just when they need to. I’m anxious, but hopeful, as always. It’ll be good to get the tests out of the way so that we can enjoy the holidays – and all the rest of our traditions, old and new.

***UPDATE: 12/17*** Both tests are now out of the way, and Neil did really well with them! We just got back from the EEG a little while ago, and he is now napping 🙂 Of course, we have to wait a few weeks for the results, but at least we can catch up on sleep this weekend! Thank you all for your prayers and well-wishes.

Our Thanksgiving in Thailand

And…we’re back!

It was the kind of trip that made a day feel like a week because it was so full, everything in it so new. It was the kind of trip that left even the kids with no desire to watch TV in the hotel room at the end of the day. We tried to read and all three of us dozed off within ten minutes.  At 8:00 PM. Of course, that was probably the jetlag, but still. A full trip, indeed.

The boys did great on the planes, all 21 hours’ worth (just to get there). The three of us met my dad in Bangkok. He had been staying in the northern part of Thailand for a week and flew down the day before we arrived. Neil’s only issue on the plane was not wanting to sit next to any “strangers,” and when it was his turn to do so, he started to have an anxiety attack. This was somewhat unexpected – he is usually so social (yeah, I know – autism and social sounds like an odd co-description, but it happens) that I didn’t think it would be a problem for him, or else I would have prepared him better.  I just didn’t think of it at all. Seeing the writing on the wall as Neil started to escalate there on the plane, I quickly switched seats with him, much to Adam’s chagrin. “Don’t give in to him, Mom;” I’ve heard it before.  I tried to explain to Adam that it was not a good time for a teachable moment.  I always feel that I lose respect in his eyes when I have to do things like that. It comes with the territory, unfortunately.

Lots of things come with the territory when you travel with someone who has special needs, of course. The two that affected us the most were food preferences and wandering. I took a risk embarking on an international trip with a child who wanders, but it was a calculated risk. Neil has a history of wandering in public places, even fairly recently. I would never have attempted a trip like this in his younger years, or even two years ago. But I felt confident that at this point the risk was manageable. And he did wander once – at the Ayutthaya ruins, the highlight of the trip for him – but I quickly noticed and found him within five minutes. Of course, I was beating myself up the entire five minutes (which felt like twenty), but it was really just my PTSD kicking in. My rational mind knows that he can pretty much hold his own these days.

Enough of the negative stuff! We had clear skies the whole week, and all of our tours went off without a hitch. My dad treated me to no less than three (!) Thai massages, including one on the beach! Adam’s stomach bothered him a little one night, but other than that, no one got sick. And other than a few mosquito bites, no one was injured. A successful trip on all counts! And without further ado, I give you…the pictures:

Adam on the plane, right before I switched seats with Neil.

Neil on the balcony of our tenth-floor hotel room.

On a khlong boat on the Chao Phraya river, which flows through the middle of Bangkok and most of Thailand.

Along the river sits Buddhist temple Wat Arun, which means “Temple of the Dawn,” with its Khmer-style tower, approximately 80 feet high.

With Dad at the base of Wat Arun, photography by Adam.

Guardians at Wat Arun

Climbing Wat Arun’s scary-steep stairs!

Adam (in red shirt) at the bottom stair landing of Wat Arun.

 

Along one of the canals of the Chao Phraya river. Bangkok is nicknamed “Venice of the East.”

The famed Floating Market, where Adam bought a cool wooden crossbow as a souvenir. Even with my suggestions, Neil had great difficulty choosing a souvenir, saying, “Everything is so unfamiliar to me.” Finally he settled on a giant, one-inch-diameter pencil, stating that he could use it as a prop in his films. I guess it was the only thing that looked familiar to him! But still, his souvenir from Thailand is a pencil.

Dad purchased a coconut from a floating vendor who cut it right then and there and stuck in the straws for us (that’s the top of the coconut, not a drink umbrella). It doesn’t get much fresher than that!

Even Neil drank it!

Ah, coconut palms…they were everywhere, and I loved seeing them.

At the Bridge on the River Kwai (about an hour from Bangkok). Neil did some filming here. Not only did I have to keep my eye on him, I also had to make sure he didn’t set his video camera down anywhere. Can you imagine the meltdown if he’d lost it?

At the Tiger Temple (two hours north of Bangkok).

Neil with a “real Tigger”!

Some of the many Buddhas in Thailand.

 

Walking around Wat Po, aka Temple of the Reclining Buddha.

Neil standing guard.

Adam’s favorite (because of the top hat!)

Mealtimes were interesting! Neil subsisted on fruit, rice, and the doughnuts served with the hotel’s continental breakfast. Adam, the pickier eater, dove in and tried pad thai, among other things!

Chakri Mahaprasat Hall at the Grand Palace.

The boys at the Grand Palace.

At the beach at Pattaya – Neil did not enjoy himself and remained in the beach chair the entire time – two whole hours! Both boys discovered on this trip that they were not fond of humidity.

Exhausted at the end of another full day.

At the ruins of Ayutthaya, the ancient capital of Siam. The boys said it was too hot to smile.

We declined taking the elephant tour around Ayutthaya. If it was too hot for us, we thought it would be too hot for them as well.

More ruins.

Adam taking a breather.

 Dad/Grandpa filming the ruins.

Thanksgiving dinner at our favorite restaurant in Bangkok – The Waterfront. Incredible food and ambiance – alfresco, and literally right over the river.

On our way home, we had an eleven-hour layover at LAX – perfect! Neil and Adam’s dad came and picked them up and spent the day with them, and one of my sisters came to get me. I freshened up at her apartment and then we went wine tasting with our brother! It was such a treat to see both of them, and a wonderful end to the trip. Massages in Thailand and wine tasting fresh off the plane – yep, that’s how we roll. I love my family!

The Lowdown, Vol. 5

It’s sort of been good-days-and-bad-days around here lately. Good days, like what I wrote about in a recent post, and bad days, like what I don’t write about. I allude to Neil’s “grumpiness,” which is blog-speak for blatant disrespectfulness; I say that he is doing well emotionally and behaviorally, and days later he is raging and crying about being irresponsible and worthless; I write about him being comfortable at his current school, yet his academic/executive functioning skills are still lacking (putting it mildly), and I have no strength to deal with it now, after years of dealing with it alone. I need a vacation. We need a vacation.

Fortunately, several months ago we started planning a vacation for the week of Thanksgiving. My father is an avid world traveler and wanted to take his two older grandsons on an international trip as their high school graduation gift from him. Not sure what direction his cancer battle would take (he is currently undergoing his third round of treatment), earlier this year Dad suggested that we accompany him on his annual Thanksgiving-in-Thailand trip now rather than wait for their graduations. And so, I am very excited to announce that early Friday morning we leave for a week in Thailand!

The boys are ecstatic about their first international trip – they have read and enjoyed National Geographic since Kindergarten and can’t wait to get out and explore and experience (albeit briefly) another country. Grandpa has planned some amazing activities! And it will be so great to spend some time together. We can’t wait!

 

Steps

Neil, age sixteen, calmly noticing that there is only enough milk for one bowl of cereal:  “I’ll just have toast this morning.”

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At the age of six, after he had spent three years in an intensive ABA-based program, Neil started Kindergarten in a contained (non-mainstreamed) classroom through STEPS, Specialized Training in Education Program Service. It was a two-year program, and he did so well after the first year that I made a huge mistake, one I still regret: I tried mainstreaming him before he was ready. The results were disastrous, and fortunately we were able to have him go back into the STEPS classroom after several agonizing weeks of the regular. He seamlessly returned to STEPS and finished out his second year, making even more developmental strides.

Almost ten years have passed, and I’ve never forgotten the STEPS classroom and how beneficial it was for Neil. But to be honest, usually it’s the acronym that I think of on a regular basis. It’s a reminder of the nature of development where autism is concerned – sometimes it’s one step forward, two steps back. Sometimes it just seems to be a whole series of steps back. And sometimes there are those blessed days when it’s one forward step after another.

Aside from some grouchiness due to Daylight Savings Time and some minor growling about having to do household chores, Neil has, behaviorally and socially, been doing incredibly well. He still attends his social skills class every other week, and that helps a lot. But the fact is – he’s self-regulating just as well as he did when he was on medication. It took some adjustment time, but these days, he continues to out-do himself.

For instance, when we were planning his recent birthday sleepover with two friends, he thought that it would be fun to carve pumpkins with them, and I thought it best to prepare him by mentioning that no one should be obligated to carve the pumpkins if they didn’t want to. Neil’s calm response (in his typical flat voice): “I most certainly recognize that.” (!) Additionally, at this point he has nearly mastered the art of the Unprompted Thank You, less than a year after his first one. And one morning last week, as he was going out to the shed to get his bike to ride to school (a feat that, even after a year, I never take for granted), on his own he remembered his helmet when I kissed him goodbye and said, “I love you. Ride safely.” Usually I notice when he occasionally forgets his helmet. I don’t know which shocked me more – that I didn’t notice, or that when I said ride safely, he realized that he had forgotten his helmet and went to put it on. But that – amazing as it was – was nothing compared to the thing with the toast.

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Adam, my creature of extreme habit, my fourteen-year-old limited eater, always has cereal and milk for breakfast. It’s the only dairy he will consume. If we’ve run out of milk on grocery day, he refuses to have anything else for breakfast, and I can’t stand the thought of him going hungry. In the mornings, Neil usually gets to the kitchen first to pour his own bowl of cereal and milk. Then Adam staggers in and does the same thing. Once in a while, Neil, on autopilot, uses up the last of the milk before Adam gets out there. I’m sure it was never a conscious decision on Neil’s part not to save any for Adam. So, knowing that Neil also likes toast for breakfast, I made a suggestion one morning when there had only been one serving of milk in the carton and Neil had consumed it.  “Since Adam doesn’t like toast, maybe in the future if you notice that there’s only enough milk for one person, you could save it for him, and you could have toast.” Neil negligibly nodded; morning tends to be his least verbal time. I figured that, at best, he might remember to save the milk after I had reminded him at least twenty more times (and no, I’m not exaggerating). I certainly didn’t in my wildest dreams think that two weeks later, after my mentioning it only once to him, that on his own he would pour his bowl of cereal, go get the milk, notice by the carton’s weight that it only had one serving left in it, and calmly, empathetically announce, “I’ll just have toast this morning,” saving the milk for his brother.

But that’s just what he did. He took another (big) step forward. And my heart swelled with emotion for my son, this wonderful soul who has never stopped trying.

Ed. note: Veterans Day has always been an important day to our family, and Neil and I will be continuing his tradition again this year. If you hadn’t read it last year (or would like to again), I’d be honored if you would read my post about Neil’s tribute to veterans. It’s one of my favorite stories about my son – and the veterans he looks up to.

The New Guy

Neil, in recent years, has developed a liking for scary movies. Like, horror movies. Granted, they’re not his favorite, and he likes many other types of movies. In fact, he likes most movies, so perhaps he just doesn’t discriminate when it comes to movies. But seriously, how can a kid who loves Winnie the Pooh and Tigger also enjoy horror movies? I’ve tried asking him why he likes them, but of course answering any “why” questions is always difficult for him. He said, “With scary movies, I just think to myself that it’s not really real, so I’m not really scared.” Well, okay then. Let’s move on.

So he stepped things up from last year’s zombie theme (he was the zombie killer from The Evil Dead, not a zombie), and this Halloween he decided to be Jason from the Friday the 13th movies. Pretty simple, as far as costumes go – just buy the hockey mask and put on old clothes. But there was one small problem – I had told him last year that that was his last year trick-or-treating. At sixteen and 5’10”, he’s just too big. But with his five-year emotional delay, that’s like telling an eleven-year-old that he can’t go trick-or-treating anymore. And on Halloween this year, Neil begged me to let him go “one last time.”

I gently reminded him that last year was his last time, and in the split second before he could protest, I had a flash of genius. “And Neil!” I proclaimed, “Now you are old enough to open the door for the trick-or-treaters! And you can wear your costume while you give out the candy!”

He smiled a little, processing. “Because I’m almost an adult.”

Wanting to save that conversation for another time, I quickly moved on to describing the duties and “policies,” as Neil put it, of being the candy giver-outer, feeling triumphant that my idea had successfully diverted a tirade. Neil was delighted about his new role, and I was just as happy about his not-usually-this-easy acceptance of change as I was about being relieved of my annual post for the past nine years. It was time to train the new guy. I told Neil not to scare the little ones, to say “Happy Halloween!” in a cheerful voice, even though he was being Jason. I instructed him to give out one candy bar (Snickers, of course, and KitKat) per kid. We set up the candy bowl, and he diligently watched out the window.

“Hey, Mom,” he called to me from his spot near the front door, “I thought up a good catch-phrase for myself.”

“A catch-phrase?”

“I’ll say, ‘I left my machete in the shed.'”

“Okay, but not to the little kids.”

The doorbell rang, and I hovered around the corner, out of sight, ready to assist if necessary. I heard some little voices yelling Trick or Treat! One said, “I like your mask.” Neil, confused for a second, dutifully said Thanks, and then Happy Halloween! before closing the door. “Mom!” he called out in an amused tone, “There were three little Dorothys!” I laughed to myself then, realizing that the ones I thought would be scared of his costume actually had no idea who he was supposed to be and weren’t scared at all. He was just a guy wearing a hockey mask.

Sure enough, as time went by and the older kids started coming, I heard Whoa, that’s kinda scary as he opened the door. His tone of voice changed from being cheerful and friendly (to the littler kids) to sounding a little more foreboding as the evening went on. He employed his “catch-phrase” a few times, and when someone asked for a second piece of candy, he answered in his typically flat, deep voice, “The policy is one piece of candy.” At my spot around the corner, I stifled a guffaw.

Even with Neil’s strict adherence to policy, we ran out of candy by 8:30 and had to shut off all the lights in the front rooms of the house. Then we went back to the family room with the few pieces I’d fortunately squirreled away, and Neil humored me while we watched one of my all-time faves, Disney’s animated The Legend of Sleepy Hollow. Not very scary, of course, but it was the perfect ending to my favorite Halloween ever.