For most of this year (and some of last), I had been searching for a life coach, just wanting help in figuring out how to approach my life so that I would feel less overwhelmed. I’d read about various life coaches on friends’ blogs and would come across a few online, but none of them felt right for me. One day a few months ago, Eithne left a comment on one of my posts. She linked to her website, and as soon as I clicked over, I knew that she was the one.  Through her excellent coaching I am learning to prioritize my life according to what I value, and I definitely feel that I now have the tools to enable myself to feel less overwhelmed. To anyone looking for a life coach, I highly recommend her!

She also helped me to figure something out. You see, several months ago, I had this gut feeling. I just knew that it was the right time to put my house on the market. There was no doubt in my mind, and I felt confident in doing so. It was all about the timing - I knew that I was supposed to do it. But I thought it was because I was supposed to move to L.A. this year. I thought that the timing was right for that. Of course, the house didn’t sell in the time frame that I needed it to. And at first I was crushed - how could that not come together? I just knew that the timing had been right to put it on the market. I had been so sure. But wait. It turns out that the timing was right to put the house on the market when I did. Why? Oh, you’re going to love this! Because I am now dating my real estate agent! That’s right! After not dating for almost two years, it’s so nice to enjoy that again. And it’s great to have that gut feeling turn out to be right after all.

Last, but certainly not least, I recently received a lovely new (or new to me) blog award:

Isn’t it cool? I love the design. And I also love the cool blog from whence it came: Big Daddy Autism. Thanks, Big Daddy! If you haven’t checked him out yet, head on over there for some much-needed humor and some thought-provoking posts.

Apparently in accepting this award, I must reveal seven things about myself. So I’ll follow Big Daddy’s example and mention the following:

1) I have two tattoos, a tiger and a Celtic knot. The tiger has been on my arm for ten years, and it’s really beautiful. During the summer I receive many compliments on both of them.

2) I have written and published a novel, and I’m (slowly) working on my next one.

3) My eyes are green with gold flecks in them.  Sometimes they appear to be hazel.

4) I have driven the same car for over ten years, and it feels like an extension of myself. I love it like I would a horse.

5) My favorite hobby is winetasting. So much so that I wanted to put a bocce court in my backyard because it’s the only sport you can play and not have to put down your wine glass.

6) I have sustained three major injuries from one of my other hobbies - snowboarding. I can assure you that no wine was involved, although it certainly was afterward.

7) I drink green smoothies every morning for breakfast. A green smoothie in the morning and a glass of wine at night - it’s all about balance!

There you have it. I’d do the tagging thing, but I have a big IEP meeting tomorrow morning (more on that next week), and must use the rest of my evening to prepare. You know how it is.

Cheers, everyone!

Please extend a warm welcome-back to Aidan, who turned 14 on the 15^th (and is excited about his “golden” next year):

and Nigel, who acquired a hand-me-down laptop and iPhone 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 Aidan 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 to let them know what happened, or rather what didn’t. 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.

Sometimes I think that the last sixteen years of my life have all been one big Plan B. One long divergent path. Sixteen years ago I graduated from college and, through no fault of my own, started having children long before Plan A had stipulated. Having two children with special needs was not in Plan A. Autism (although it starts with A!) was not in Plan A. Divorce - no. Single parenting? No way in hell was that part of Plan A.

And so I learned that I didn’t just need to have a Plan B, I was constantly living it. We all do to some extent - life takes different twists and turns, and we all must adapt to change, some of it completely unexpected. Plan B has to happen whether you planned for it or not, whether it was an actual plan or a split-second decision. You go into the grocery store, race around throwing a few things into your cart, hoping that your distressed autistic child can hold it together for just a few more minutes, and then someone turns on an electric coffee grinder and it all goes out the window. Your child shrieks and tries to bolt, and it’s time for Plan B. You leave the blasted cart in the blasted store and carry your hysterical child out to the blasted car, dragging your other reluctant child by the arm because you can’t leave him in the store because he’s a toddler for God’s sake and you’re a blasted single parent. Everybody’s either shrieking or crying or kicking you or pulling on you or staring or shaking their heads at you. And you still didn’t get the few groceries you needed. Plan B sucks. Sometimes, even, it’s the loss of a job, a home, or a loved one - and then Plan B takes on a whole different persona, a whole different significance. It’s no longer just a new plan. It’s a safety net. Those, of course, are the most life-altering Plan Bs of all.

But I’ve also learned that Plan B, whether big or small, doesn’t always have to suck. Sometimes Plan B can even offer some comfort in disguise. And even though it’s not what you wanted or hoped for, you can make it work. It’s not Plan A, but in most cases, you can live with it, sometimes because you have no other choice. Slowly you get used to it. And you might even warm up to some aspects of it. 

My latest Plan B, in a long string of Plan Bs (sixteen years’ worth), involved what to do after I’d moved my two teenage boys seven hundred miles away to live with their father in Los Angeles while I stayed in Oregon to sell the house. First, Nigel’s IEP wasn’t amended so that he could go to a special school for students with autism. So we came up with the Plan B of their father moving to a better school district in the L.A. area, one that had a good special education department. Meanwhile, I felt so confident with the timing of this major change in our lives that I was certain my house would sell before August. Surely one of those two things would work out. But neither one did.

So technically, we’ve moved onto Plan C at this point, or perhaps Plan Q by now. The boys are coming back to Oregon and will attend the same schools that they did last year. I have taken my house off the market. I’ll have to work extra hard to get Nigel’s team to meet his academic needs, which is the whole reason why I wanted him to go to the special school in the first place. But here’s the wait-a-minute moment, the half-the-battle factor - Nigel loves his school here in Oregon. He has friends here, he’s comfortable here, he’s safe, and he’s happy. Why would I want to mess with that?! Well, there are two reasons why - one, his father’s not here. Two, the school hasn’t yet figured out how to teach him to work independently. And those are pretty significant reasons.

In spite of that, every day I’m feeling better about this particular Plan B. The boys will be back at familiar schools in which they are comfortable. And I don’t have to find a new job (even the thought of that was a huge stress for me - those of you going through it, you have my deepest empathy). Those are pretty significant reasons too. And so, although Plan B isn’t what I’d hoped for (is it ever?), I can live with it. It might turn out just fine after all.

These photos are of our much-loved and oft-climbed tree, which split in half a few years ago during a storm. The stronger half is still standing in our front yard, and the firewood from the weaker half lasted a long time. 

*

Several years ago, on one of my occasional trips to the bookstore to hunt for autism books (this was back in the days when Barnes & Noble did not have an autism section; the entire special needs category, in a large bookstore, encompassed a single shelf with maybe only one or two books on autism, if I was lucky), I happily discovered Exiting Nirvana by Clara Claiborne Park (who also wrote The Siege). Nigel was seven or eight at the time, and this was the first book I’d read on autism that not only gave me hope, it was actually helpful. I highlighted many passages throughout the book (on almost every page!) because so much of what I read of the author’s daughter reminded me of my son.

One of the sections that really stood out to me was about her daughter’s development in thinking of others and doing thoughtful things for other people, keeping in mind their needs or preferences. The most memorable part of the book for me was an anecdote that illustrated how, in adulthood, she had finally mastered this. While walking on the beach with her father on a cold and windy day, she decided to go back to the house for a sweatshirt. When she returned, not only did she have her sweatshirt, she had also brought her father’s jacket, unasked. My heart soared just reading about it, thinking that someday my son might do the same.

*

My sons are 700 miles away, visiting their father as they do every summer, and I haven’t seen them for six weeks. We talk on the phone and occasionally exchange little emails, a new development since last year. A month ago, after they had been gone two weeks, Nigel asked me to email him pictures of our cats, so I took some new ones and sent them. The next time we talked on the phone, I asked him if he received them, and he said yes and thanked me for them (!), and I thought that was the end of it. I was just happy about the unprompted thank you (a recent milestone for him)!  

A few days ago, I received the following email from Nigel. It might have taken four weeks for a response, but it was worth it. Imagine my complete delight.

Hi mom, thanks for the photos. So I thought of a photo to send to you in return. It’s of two of the characters from your favorite Disney movie: The Rescuers.

I love and miss you and I hope to talk to you again sometime.

Love,
        From your son, Nigel

                                                                        Crater Lake

Is summer over yet?

Don’t get me wrong. I’m a heat-seeker. I thrive on the warmth, crave it all year. So I love the weather. But I hate missing my kids.

This is their ninth summer in Los Angeles with their dad, 700 miles away from me. For nine summers I have sat at my desk and stared at their pictures and talked to them on the phone. My “conversations” with Nigel haven’t always been on track, but he’s gotten better as the years have gone by. And I’m just glad that he has the ability to talk on the phone in the first place. Because that wasn’t always the case. These nine years have brought so many changes.

So I sit here, looking at my desk photos, clicking through summer posts from 2008 and 2009, wondering what the heck I wrote about when my kids weren’t even here. I wrote about several phone conversations, and I did a series on Nigel’s early development. I wrote book reviews and posted about miscellaneous autism and special needs topics. Last summer I wrote about my incredible trip to Nepal for autism education.

But this summer I find myself at a loss for material. My main sources of inspiration are not in my presence to say funny or profound things. Our phone conversations consist of what-did-you-do-today and I-miss-you and the occasional movie idea/obsession monologue.

But the real reason is that I’m not at my emotional best right now. I’m disjointed without my boys, I’m disappointed that my moving plans aren’t coming together, and I’m disheartened in general. Plan B will go into effect soon, and it’s a letdown. I can dress it up and say that I’m hopeful, but it’s not at all what I had hoped for. It just doesn’t seem right - or fair - to have the blues in the summer. But I do.

Please join me at Hopeful Parents today.

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 Nigel is the power of belief.  More than anything else, every day of his life, Nigel has taught me to believe. But what I have learned from Aidan 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 placed upon a near-typical child. It means accepting What Is. And it’s something that Aidan, even more than Nigel, has taught me every day.

*

Unfortunately, I don’t write as much about Aidan. This website is called Teen Autism, and Aidan 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 Nigel a picky eater, Aidan 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 Nigel is picky, he still manages to eat a variety of foods, and in mass quantities). And it bothered me that Aidan 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 Aidan’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). 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.

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

So, that idea lasted about two years. Life sort of got in the way, along with other writing endeavors. I had always meant to pick it back up again but never did. Then I started blogging, mostly about my children’s development, and I feel better about all those years that I didn’t write about the kids (although most of those years were documented in IEP paperwork). Their development is described in detail in over four hundred blog posts. I no longer feel like I should write about them individually once a year, because I write about them all year long.

But this year was a milestone year with Nigel starting high school and making some incredible social gains, and now that we’ve reached the end of the first year, I thought I’d recap the highlights:

September: Nigel advocated for himself for the first time at an IEP meeting and learned to safely and responsibly ride his bike to and from school independently.

October: Nigel turned 15 and wrote a guest post. Also, he and I had a difficult discussion about not learning to drive yet, he successfully used his cell phone for the first time when he had a problem with his bike, and he revealed that, after many years of self-loathing, he is learning to accept his autism.

November: Nigel, for the first time ever, joined a sports team, and my heart soared at his achievement. In other news, he prepared and drank a pizza smoothie.

December: Nigel’s language skills took a step back (or sideways) with some lengthy delayed echolalia, and then dramatically forward with the most amazing conversation I’ve ever had with him.

January: Nigel (with Aidan) took his first solo flight! A mere week later, I overheard his first unprompted thank you! However, the month ended on a sad note due to his needing to quit the wrestling team for unfair reasons, but he handled it with the utmost maturity.

February: Nigel attended his first high school dance, but he still exhibited some heartbreaking social vulnerability.

March: Nigel and I watched the movie Adam together and had a great discussion about it, and Nigel found his niche in his theater class, where he made some truly wonderful new friends. I got to meet some of them when Nigel attended his first play and I accompanied him, where I witnessed a beautiful spontaneous hug.

April: Nigel started shaving! And I experienced the wonderful novelty of enjoying myself in a restaurant with my sons and having a stranger compliment me on their behavior for the first time ever.

May: Nigel went off of his medication and has been doing an amazing job overall of self-regulating difficult emotions and managing his behavior. He also achieved the rank of Star Scout after six years of Scouting.

June: Nigel had a major seizure, his first. Then he had to say goodbye to extended family members and his long-time Scout friends before moving to Los Angeles to be with his dad.

As you can probably gather, Nigel’s growth this year has been tremendous. When I look back to his earlier years, still not functionally verbal at age five with extreme sensory and behavioral issues, I can’t believe all that he has accomplished. This year alone blows me away. It’s been a lot of work, with a great deal of assistance in various forms, but he has continued to learn and to succeed on his own terms, as I knew he would. I know there will be future struggles; he still requires constant assistance academically and will continue to need help with social issues. But we’ll take it on. My son gives me so much hope that I can’t wait to see what the next school year will bring. I know it won’t be easy (none of it has been), but ultimately, it will be good.

Nigel, age 11, being a tiki at Pu’uhonua National Historical Park, Hawaii, 2006

Enter Chewy Pencil Toppers from National Autism Resources.  These durable, flexible tubes fit over the ends of pencils (or thin pens) and provide deep pressure through the use of biting or chewing. I recently received a sample and enjoyed trying them out myself! I’m sure they will be very beneficial for Nigel, especially with the potentially increased anxiety due to moving and starting at a new school. Anything that would help relieve his poor, often bleeding fingers certainly has my endorsement!