Teen Autism

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Micki: Thank you for contacting Economy Air. My name is Micki. How may I assist you today?

Tanya: I have downloaded the unaccompanied minor form for my two children, ages 13 and 15. My question is if the meeting party needs to sign where it says “signature of Party Accepting Custody” when they actually pick up the children, or does it need to be signed by the meeting party beforehand? Thanks.

Micki: 13 and 15 year olds traveling together are not considered unaccompanied minors. The 15 year old is considered an adult.

Tanya: My 15-year-old has autism, and their father still needs to go directly to the gate to pick them up.

Micki: [no response]

Tanya: He’ll be fine on the plane, but we don’t want him going through the airport unaccompanied.

Micki: That is fine. We will document the itinerary so that it’s understood by the agents. All the father needs to do is show his identification at the ticket counter and they will issue him a gate pass to meet the flight.

Those who happened to catch my post a few days ago know what transpired with the December 25^th travel plans, and why the flight had to be scheduled that day. But since we had no way of knowing that it would be canceled, the boys were prepped for their first solo flight (!). We practiced lifting up their luggage to put it in the overhead bins. We talked about being patient while waiting to de-plane and not making comments about how people should “just move.” We talked about what to do if for some reason their father wasn’t at the gate when they landed. We went over what topics are not okay to talk about with airport security. Special needs were noted with the airline agent in an online chat that could be printed out for verification. Not surprisingly, there were many preparations for this huge milestone.

And although they ended up not flying that day, we still planned to have them return to Oregon by plane.  I got up that morning and prayed for a fogless arrival time, so that the boys’ plane could land safely. Their father called to let me know as soon as they boarded in LA. He sounded so proud, describing how he watched the boys get on the plane, and how they waited patiently for an elderly woman in front of them.

When the time came, I drove to our little airport to pick them up. The sky looked good, but as I neared the terminal, my body started gasping involuntarily. It wasn’t a panic attack, which I’ve had in the past. No, it was just a mom, overcome with emotion. I couldn’t help it. Nigel was doing something I never thought he’d be able to do! He has come so far, and he never ceases to amaze me.

I parked the car and pulled myself together. I went to the counter to request a gate pass. They hemmed and hawed a bit at first (I wanted to say, So what if they’re teenagers? They are my children, autistic or not, and I have every right to meet them at the gate!), but all I had to do was drop the A-word, and then they were accommodating. The flight was only a few minutes late, and I waited anxiously at the gate.

I was afraid that I would start crying again with their arrival, but as soon as I saw them, my face broke into a huge grin! Aidan ran past me, looking unwell. “Mom, I’m sick. I’m going to the bathroom,” he said as he handed me his luggage and took off. “What’s wrong?” I called after him, but he hurried away. I hugged Nigel and asked him what was wrong with Aidan. He said he didn’t know, and we walked over to the side to wait for him. Nigel said that the flight was fine, and then he proceeded to tell me about how, at the movie theater the night before, he threw up twice during the 3-D showing of Avatar. “That 3-D was too good, I guess!” he said with a chuckle. “I’m sorry that happened, honey,” I said. He told me that all the 3-D aerial scenes made him dizzy and sick. I hadn’t even thought of that as a movie-related sensory issue. If it’s not one thing, it’s another!

Aidan returned then, explaining that he’d felt a little airsick when they started descending, and then the stuffiness of the cabin and having so many people around him while waiting to de-plane just got to him. “At least I didn’t throw up in the plane,” he said. Yes, at least. Oh, my poor SPD boys! I felt so bad that they had both been sick, especially when I’d hoped that they would enjoy the movie, and later, take pride in their autonomy on the flight. But my concern took a back seat to my overall relief and exhilaration. They did it! Their first solo flight! After many years of effort in dealing with their challenges, it’s so validating to just let them fly.

What kind of shoes are these and what’s the seven-year story behind them? Find out at Hopeful Parents today!

Tonight was the monthly Southern Oregon Autism Support Group meeting that I facilitate. We had a low turn-out, probably due to illness, but it was one of the best meetings we’ve ever had. For one thing, two new members attended, so that was great. For another thing, they were the only two members who attended. And as much as I love when we have a big turn-out, when only three people are present, you can really talk.

Since one of them was new to the area and the other one was new to the diagnosis, we started off by talking about local resources. It’s a short list for our area, unfortunately, but I think I gave them a few good leads. We moved on to listing various topics of discussion that we can focus on for future meetings, topics that would be most helpful to everyone (since our group consists of parents of preschoolers to adults). I want this support group to be as beneficial as possible. And that led me to mention one of the topics that I’d like to feature at a future meeting - the emotional issues we face as ASD parents. Usually that area is relegated to the professionals. But what if you can’t afford a therapist or don’t have the time to see one regularly? And if the therapist doesn’t have a child on the spectrum, how are you going to feel that total support and understanding that you feel when you’re talking with other ASD parents?

One of the new members, a mother of a 24-year-old son with Asperger’s, opened up and talked about how hard it is receiving the wedding invitations and college graduation announcements of her friends’ children. How difficult it is when your child doesn’t meet the typical milestones. And I knew - oh, how I knew the emotions she described. It’s not that our children have disappointed us - it’s not that at all. It’s that we wish things didn’t have to be so hard for them, and for us. It’s that we fear the future. For some of us, it starts with the not-pointing-at-things-to-show-them-to-us. Then there’s the not-talking. For others, it’s the not-potty-training or not-making-eye-contact. Or all of the above. And plenty more.

But then, while talking, we realized that our kids have different milestones, and that’s okay. Because whether or not they ever meet those typical milestones, we celebrate the ones they do meet. Like, in Nigel’s case, not shrieking in a public restroom - that was huge for me. Being mainstreamed in a regular classroom (with full-time one-on-one aides, but still - huge). Going to the grocery store without distress - anywhere, really. Those are some of my milestones. And only those close to us and other ASD parents can really get how huge those milestones are.

Take for example, when I was at work yesterday. The boys were home because of Veterans Day, but Nigel needed to go to his school for wrestling practice (participation in a team sport - huge!) for two hours. Since he’s been successful with riding his bike to and from school every day, I took a major leap of faith and thought that he could handle riding there and then home afterward. I told him he had to call me as soon as he got home to let me know. We calculated that he would be home by 10:30 and would call as soon as he put his bike away. Aidan would be home to let him in.

So I’m at work and 10:30 rolls around. Of course, I’ve been anxious pretty much the whole morning. But the phone rings right on time (big!), and it’s him. However, from the background noise, I can tell that he’s not at home. Semi-panic, or pre-panic, sets in. “Where are you?” I ask. He tells me that he’s still at the school, that he was mistaken about the time practice started, which was an hour later than he’d thought, so he wouldn’t be home for another hour. So, even though his instructions had been to call me when he got home, he realized that he should call me at 10:30 anyway to let me know that the situation had changed. He didn’t say that, but that’s what happened. And I about fell out of my chair.

I thanked him for being so responsible. I could barely get the words out. In shock, I turned to my co-worker to try to share the moment with her. Of course, she didn’t get it at all. What’s the big deal about a 15-year-old doing that? I tried to turn it into a teachable moment by describing my son’s challenges and how autism affects him. Not a flicker of understanding.

But tonight at the meeting? Empathy. They totally got why that was huge without me explaining it. I felt validated. I felt understood. I didn’t feel alone. And that, my friends, is the whole reason for a support group.

We have different milestones for our kids, but we do have them. And it’s so affirming to know people who understand those milestones, and celebrate them with us. My co-worker has known me for five years and didn’t understand. Those two women had known me for one hour, and they were celebrating with me. Best. Meeting. Ever. And that’s a milestone too.

A cute little blog award has been making the rounds, and I am quite touched to have received it! Thank you, Corrie, of The Moon’s Broke for this sweet award! It comes with the following rules:

• You must thank the person who has given you the award.
• Copy the logo and place it on your blog.
• Link to the person who has nominated you for the award.
• Name 7 things about yourself that people might find interesting.
• Nominate 7 other Kreativ Bloggers.
• Post links to the 7 blogs you nominate.
• Leave a comment on which of the blogs to let them know they have been nominated.

Seven things about me (”interesting” or not - you decide):

• I was born and raised in Los Angeles County.
• I decided at the age of four that I wanted to be a writer.
• I was a writer for Halloween when I was eight years old.
• I received my BA in English.
• I graduated from college, got married, and gave birth to my first child all in the same year.
• I have always loved tigers.
• I am planning to go to Thailand next year with my father and my sons.

My nominations for 7 other “Kreativ Bloggers”:

• Meg at The Pages of Our Crazy Life for her creative photo pages.
• Cathy at The Clothesline for her recipes, photos, and haiku.
• Michelle at The Sneathen Family Site for her creative approach to problem-solving.
• Dynamite Girl for her creative story-telling.
• Joanie at The Bright Side for her recipes, decorating ideas, and art recommendations.
• Yours, Mine and Autism for the most creative blog name about a blended family.
• Alicia at Welcome to My Planet for her cool, creative header, which I love, along with the rest of her blog!

Best wishes to all!

We have a well-loved concert venue here in southern Oregon called Britt Festivals. I’ve enjoyed seeing many shows there over the twenty years that I’ve lived in this area.  It’s an outdoor venue where patrons can bring their own picnic dinner, including beer and wine, and listen to great music on a hill under the stars. I try to go once every summer, and every time I go, I wish my boys could be with me. For most of the summer shows, they’re in LA with their dad, but that, of course, is not the only issue. How do you take a sound-sensitive autistic teen to a concert? Would ear plugs be enough? Could he handle the sensory bombardment for over two hours? Would he even enjoy himself?

Inspired by reading about C going to a nightclub (!) last year, I decided that I wanted to take Nigel to a concert at Britt. I figured that we had a better chance of success with this venue since it is outdoors, and the sound level would not be contained within walls. He could also lie down on a blanket on the grass, read books, and eat food from home to increase his comfort level. And then when I heard that one of his favorite bands, CCR, was coming to town the week after he and Aidan would return from LA, I knew that I had a recipe for success. I bought three tickets.

But I also knew that in order for it to be successful, I needed to prepare him. I called him while he was still in LA and told him about the upcoming concert we’d be attending, assuring him that we’d bring ear plugs. He was excited about seeing his first concert and that it would be CCR! He was mildly disappointed that John Fogarty would not be present (the band is now called Creedence Clearwater Revisited), but he was still very motivated to go. A few days before the concert, I showed him the website of the venue, with a map showing the grounds and the lawn area where we would be sitting. I explained to him that even though we had tickets, we still needed to wait in line for at least an hour to get good lawn seats, and that once we got our seats, we would need to wait an hour and a half before the concert started. Then I had to explain the concept of an “opening band” and field questions about why there would be one before CCR took the stage.

So we packed lots of food, beverages, books, National Geographics, and our magnetic portable chess game. Rain was forecasted for that one day of the week (damn!), so I packed umbrellas and jackets. And of course - the ear plugs. It rained just a little while we were waiting for our seats, and Nigel took it in stride under an umbrella. Finally we went inside, found a good spot, and spread out our blanket. We read for a while and relaxed, and when the music started, Nigel and I were in the middle of a chess game. His eyes grew huge, and he said, “Quick, Mom! The ear plugs!” He put them in and adjusted to the sound level. I was relieved.

But I was happiest when I saw how much Nigel enjoyed the concert. The vocalist, John Tristao, met with Nigel’s approval by doing an amazing job of recreating Fogarty’s distinctive voice. Nigel kept leaning over to me, making little comments like “They are using ‘60s graphics on the backdrop,” “I feel like I’m in the ‘70s,” and “I bet the aliens can see this concert from outer space.” I loved when they played “Hey Tonight,” and Nigel looked up and said to me, “The stars are perfect with this.” I had been worried that he would merely tolerate the concert, or that he wouldn’t engage. But he got up and danced, waved his arms in the air, cheered quietly, and even sang along. Seeing him mouth the words “I wanna know . . . have you ever seen the rain . . . comin’ down on a sunny day?” brought tears to my eyes. When the concert was over, I asked him, “What did you think of that?” and he said, “That was rockin’ awesome!!” with the most enthusiasm I’ve ever heard.

In the middle of their set, the band did some introductions, and the drummer, Doug Clifford, who was in the band at the beginning, told the story of how they met in seventh grade and dreamed of being in a rock band. He told of their success as musicians, eventually having two number one albums on the charts. And at the end of his short, inspirational talk, he urged the audience, “Hold onto your dream.” I really needed to hear that. I think we all do.

Dearest Nigel,

There are not enough words to express how proud I am of you today. A year ago, you anticipated your future eighth grade graduation, and I didn’t know how to tell you that because I needed to homeschool you, you would not graduate from the local middle school. On your own, you figured that out, and you initiated a plan to be able to go back there, so that you could graduate with your peers. Five months ago, you told me that you wanted to try some medication that would help regulate your behavior so that you could go back to the middle school. We did, and two months later, you were back at the middle school part-time. Three months have gone by, and I am so proud to say that not once during that entire time did the school have to call me about any behavioral issues. Not once. And today, you graduated with your class of fellow eighth graders.

Congratulations! You did it, Nigel. You did it. You set your sights on a goal and you worked to achieve it. But that should not surprise me, because that is what you have done your whole life. You were diagnosed with autism nearly twelve years ago, and you have continually shown me that although autism is an integral part of you, it alone does not define you. When diagnosed, and for some time after, you were completely nonverbal. Your sensory issues paralyzed you. I did not know back then that it was possible for any person with autism to progress as much as you have. The information was not available at the time, and I didn’t know what to expect. I didn’t know if you would learn to talk. I didn’t know if you could be mainstreamed in school. I tried to be realistic, and I didn’t dare to dream. But somewhere, deep down, I hoped.

All children learn, all children grow, but you have fought so hard to achieve that growth. You painstakingly learned to talk, to filter the agonizing sensory issues, to learn to function socially, to organize your thoughts. Many of these things you still work on, and will continue to. You will stop at nothing to work with your “difference,” as you call it, to understand it (autism) and how it affects you, and to help others learn the same. You are learning to advocate for yourself, and I am proud of that, too.

And so, my son, you inspire me. You have challenged me to be the best possible parent I can be because you needed the best from me.  “Difficult” would be an understatement for the road we have traveled together. But Nigel, if you can do it, so can I. I will continue to be right beside you, letting you lead the way. We have a big transition coming up, but when I look at what you have achieved today, and what you have gone through to get here, I’m daring to dream. I know you are too.

All my love,

Mom

Eleven and a half years ago, I attended my first special education meeting for my son, when he was three years old. It was called an IFSP - Individualized Family Service Plan - the precursor to his IEPs. Unfortunately, back then I didn’t think to bring snacks, but I did bring a tape recorder, thinking, for whatever reason, that I should.

I found the old tape and listened to it recently. It was cathartic, of course, knowing how far Nigel has come since then, but it was also very strange to hear my voice from that long ago - expressing my concerns, etc. - when I was so new to the realm of special needs parenting. I sounded so calm and sure of myself, even though I felt completely overwhelmed, had so many questions, and didn’t know the jargon. It was good to hear the confidence in my voice back then, not realizing that it had been there. I surprise myself sometimes.

And Nigel, of course, surprises me too. Last week, he attended his first special education meeting for himself. It was not an official IEP - just a placement meeting for next year - so we did not go over goals or anything like that. Nigel was reluctant to go at first, and for a while I thought that I’d have to go without him. I wanted him to go because this short meeting would prepare him for future meetings, the more intensive ones where we would discuss his goals and his progress toward them. I want him to be an active part of these meetings, to usher him into the realm of self-advocacy. To teach him how to diplomatically make his needs known to others. I tried to convey this to him in terms that he could understand, but in the end, what motivated him to go was the fact that we would need to use a map of his new high school to find the room where the meeting was being held. He has always liked maps, and immediately plotted our route.

Due to an inaccuracy in the drawing of the map, we ended up in a hallway right outside what was probably the band room, just as a loud burst of instruments blared. Nigel, eyes wide, covered his ears and yelled, “Back! We must go back!” As soon as we re-entered the previous hallway we’d been in, I said, “Well, now you know to avoid that hallway.”  “Yeah,” he said, breathless but okay.

We tried a different route and found our way to the library, where the meeting was being held. Nigel saw the Regional Autism Consultant, who has worked with him since the IFSP days, and he seemed to relax. We sat at a table and waited for the rest of the attendees. I was emotional to have Nigel there with me for the first time, and tried not to dwell on the magnitude of it lest I lose my composure. Soon the others arrived - Nigel’s speech and social skills therapist, the high school’s special education coordinator, and one of his teachers for next year (the rest of his teachers will meet the week before school starts for the official IEP).

I no longer record the meetings; in fact, I think that first one was the only one I did. But I’m glad I did so that I could listen to it years later. It was in the forefront of my mind as I watched Nigel sit in his first meeting. And I am quite proud to say that it went very well. The sped coordinator talked with him as an equal, asking him what classroom accommodations he felt he would need, assured him that all sped students get first choice for electives, and told him that he would be checking in with her every day to make sure that things are going okay and that she would help him if he needs any help. His first week, he will have someone help him get to class, and he will never, she said, have to eat lunch alone. Trying not to cry, I thanked her. Nigel, although making no eye contact and constantly scratching his head because he had neglected to take a shower when he was supposed to, answered everyone’s questions, talked about his interests appropriately, and even made a joke. At the end of the meeting, when asked what he thought of attending that high school, he responded, “If this library is well-stocked with H.G. Wells and Jules Verne books, I’ll be fine.” Everyone laughed a genuine laugh, and I stole a glance at Nigel. I could have sworn I saw a little self-satisfied smirk on his face. Oh, yes, my son, you will be fine.

One year ago today, I wrote this post, and then I was so excited that I wrote another post on the same day. One year and 238 posts later, I’m still excited.

A year ago, I went online and searched “teen autism” and found just a few items. I had been reading the blogs The Simple Dollar and Dooce for a bit, and I thought that I could do something like that about having a teenage autistic son. I wanted to create a website that could be a resource for other parents of autistic kids and also connect with those parents, because a year ago I did not know even one other parent of an autistic child. I had reached my isolation limit, and I knew that I needed the advice of others on this path, and a connection with them.  I bought WordPress for Dummies and found a super host and thus Teen Autism was born.

Since then, I have been blessed to have crossed virtual paths with many other supportive parents of children with autism. They have offered tremendously helpful advice, thanked me and encouraged me in emails, and even traveled to connect face to face.  I have become a Chapter Rep for the Autism Society of Oregon, attended informative seminars, and even had my writing on autism and puberty translated into Turkish by a reader in Istanbul whose friend had no resources there. I feel like I am truly accomplishing what I set out to do a year ago, and will continue to. I want to thank all of my readers out there, whether I know you or not, for sharing in my life with my sons. I appreciate your support so much.

And now, without further adieu, I present the 5 Most-Viewed Posts of this year:

• If I Blogged 10 Years Ago
• Brain Wave Therapy
• 5 Best Comeback Lines for Comments or Stares
• Yearbooks As Art Therapy
• When Autism Does Not Equal Liking Math

Thanks for reading!

It was like having your favorite storybook characters come to life. That’s the best way I can describe it.

This past weekend I attended a gathering of people, mostly autism bloggers, who had participated in helping to raise funds for a service dog for Riley, Michelle O’Neil’s daughter. How powerful it was for me, someone who, less than a year ago, did not personally know anyone who had a child on the autism spectrum. To sit at a table with twelve other parents of ASD children, including bestselling author John Elder Robison, was an incredible experience. I could literally feel the strength and solidarity of purpose. We are connected, and not just the people at that table. We are all connected - fellow bloggers and autism advocates, readers of autism blogs, and all parents of ASD children, no matter where they live or if they have Internet access or not. We all have different journeys, but we share the same goal - to help our children.

And so I felt privileged to partake in a lovely meal with some remarkable people. Jess and Matt Wilson and their children, who opened their home to several of us who covered some ground to get there, including Mama Mara (who brought chocolate cow pies), Pixie Mama (who posted beautiful descriptions of everyone), Michelle O’Neil (who posted some photos!), Kyra of This Mom (who posted the play-by-play), and myself. I am also glad to have met Jeneil of Rhemashope, Jenn of Devin’s Journey (who posted my new favorite metaphor), Petra of Our Journey, and Kim Stagliano and her husband. John Elder Robison not only graced us with his presence, he gave each of us two of his stunning, artistic photographs, and I can’t wait to frame mine and hang them in my home.

But I came away from this weekend with even more than some spectacular JER photography and a chocolate cow pie.  I came away with a sense of completion, and belonging. When I started this blog almost a year ago, I felt so alone. I wanted so desperately to connect with other people in my shoes. I knew there had to be plenty of other parents of ASD kids out there (1 in 150, so they tell us!), but for ten years - ten years! - I didn’t know that I was already connected. Now I do. Not just with the ones I broke bread with this weekend - all of you. Those who read this blog, and those who don’t. Those who don’t even have access to computers. Whether we know each other or not, no matter where we live, we are part of this community.

I no longer feel alone. And I hope that in reading my words, all of you out there feel the same way.

I’ve never seen The Seven Year Itch (although at some point, I’d like to). The phrase, according to Wikipedia, “refers to a disinterest in a monogamous relationship after seven years of marriage, has entered the popular culture, and has even been used by psychologists.” And now it will be used by the mother of an autistic teen, with an entirely different meaning.

As my son entered his second year of teenhood, which was just a couple of months ago, I began noticing something. Over the course of a few weeks’ worth of seemingly isolated incidents, I realized that Nigel, who had always been notorious for the eternally flat tone in his voice (except when angry), was suddenly speaking with inflection. And not just random variations - he actually put appropriate emphasis on the right words. His tone was starting to sound conversational! It took another week or two of me pointedly observing him talk and noting the increase of his inflection before I allowed myself to believe it. This is truly a developmental coup. It’s a milestone for the five-year-old boy who, when a child psychiatrist asked, could not say his own name. It’s a milestone for the boy who, for so many years, could only parrot lines from Disney movies or Scooby-Doo cartoons when he wanted to interact with people. He has worked so hard to achieve this.

I know that much of the increase in voice inflection has to do with the weekly social skills class that he is enrolled in at the local middle school this year. It’s a very small class, with only two other students, but I know that the two instructors have been specifically working with Nigel on his conversational skills. Whatever they’re doing - it’s effective. And he’s responding to it, which tells me that he’s ready. It’s time.

What do I mean by that? That’s where my seven-year-itch theory comes into play. Over the years, I have noticed that every seven years Nigel seems to make a huge leap in various areas of his development. It’s like he has this really significant itch every seven years, and when he scratches it, he hits a milestone. For example, when he was two, his sensory issues were so severe that he had to wear a fitted hooded jacket whenever we left the house to muffle sounds and help him feel secure. When he was nine, he had a wonderful regular ed teacher (he was mainstreamed that year with an aide) who not only taught him a lot academically, he patiently encouraged Nigel to remove his hood for the first time. That was also the year that I could take Nigel into grocery stores and the occasional restaurant. Another example of his seven-year-itch is in the cognitive area. When he was three, he taught himself to read, but I was told that it was common for young children with hyperlexia to not comprehend most of what they read. Seven years later, when Nigel was ten and reading at a high school level, his comprehension was tested. It was estimated that he understood about 95% of what he was reading.

When Nigel was seven, seven years ago, he really started talking. He had some speech prior to that year, but it was mostly echolalia and scripting (a term which wasn’t used much then). He would occasionally string up to four words together to communicate, but he had trouble with syntax and pronouns, verb tenses, etc. When he was seven, something clicked. He got an itch. He started stringing together more than four words spontaneously, his syntax and verb tenses began improving, and his echolalia decreased. It was remarkable. Of course, his tone was characteristically flat and downright stoic, but that was okay. It was definitely okay with me.  I figured he would always talk that way, and that was fine.

And now, seven years later, the inflection surfaces. On appropriate words, even. I am so loving this - this unexpected gift. Some seven-year-itches can be good.