Ode to Lego

When Nigel was first diagnosed at age three, and for some time after, he didn’t know how to play with toys. I bought him a kids’ train set; he laid his head to one side and stared at the tracks. He had no interest in pushing the train along, even if I showed him how. I bought him Hot Wheels cars and tried to teach him to “vroom” them around on the floor; he lined them up end-to-end along the back of the couch and cocked his head to one side to stare at them. I feared that his imagination would never develop; eleven years ago my only knowledge of autistic adults was, unfortunately, limited to Rain Man. I didn’t know what to expect for my son’s development.

But, thanks to a successful response to a modified ABA-based program for early intervention, and perhaps his own desire, Nigel learned to play with toys. He skipped over “vrooming” on the floor and went right to faster-paced, battery-operated Hot Wheels tracks. His imagination began developing with his desire to feed his stuffed animals. And then he discovered Lego.

I cannot say enough wonderful things about this toy that I loved in my own childhood. Yes, we’ve all gouged our feet on errant pieces and cursed its existence, but the fact is that no other toy has encouraged Nigel’s imagination to develop as much as Lego has. And for that, I love it.

And we have tubs of it. Literally. We progressed from a medium-sized tub to two of them, and then I just up and bought a huge industrial-sized tub with a hinged lid, which is now full. And still Nigel begs for more, especially since they’ve come out with the Indiana Jones series. Oh, my son. Be still, his heart. Lego and Indiana Jones – two of his favorite things. That’s all he wanted for Christmas. It’s like the Lego people somehow knew that this combination would make an autistic teen very, very happy.

So I bought him the sets that he wanted, as well as this book that he has not let out of his sight. Of course he has re-watched all four of the movies several more times since Christmas, just to make sure that he has all the nuances of every line down pat. And so, when he decided to watch the Troy DVD this afternoon, I was pleasantly surprised. “I’m studying the layout of the outer walls of Troy so that I can take apart the Temple of the Crystal Skull set and build Troy,” he told me.

Nigel\'s Lego Troy

And that, my friends, is what he did. He constructed the ancient city of Troy out of Lego, completely off the top of his head and of his own design. He built a wall with a ratcheted gate and levers to open it. Yes, he even built a Trojan Horse out of Lego. That is either one hell of a toy or one hell of an imagination. He’s come a long way from lining up Hot Wheels cars along the back of the couch and staring at them. And Rain Man? No offense, but you can keep your cards and toothpicks. Nigel’s got an imagination – and he’s not afraid to use it.

New Year, New Behavior

Often at the start of a new year, we note things that we would like to change about ourselves or our lives. We make resolutions and take steps to lose weight, be healthier, save money, or achieve a goal.  We are determined to improve.

Yesterday, I began preparing Nigel for his doctor appointment at the end of this week. He tends to detest these medication-management appointments, being asked to rate his mood, and answer other questions that he would rather not. So I thought that I’d prepare him a few days ahead of time, asking him some of the questions that I recall the doctor asking previously, so that Nigel can start thinking about his answers. “How would you rate your mood?” I asked.

“Fine,” he answered as usual. Then he added, “But I don’t see any changes.”

Surprised and intrigued at this part about “changes,” I pressed further. “What changes are you hoping to see?”

“My behavior. I want to not get angry so much so that I can go back to regular school.”

And my heart thumped as I understood what I had always wondered. Even though Nigel is much calmer with homeschooling than with mainstreaming, he is an extroverted autist, and he misses being in a more social environment. Even though he is regularly involved in Boy Scouts and attends a weekly social skills class, it’s not enough for him. He craves more. The sad part in all of this is that, because of his autism, he usually can’t handle more. It is very difficult for him to regulate his behavior and emotions. He is learning, but I’m hoping there is some medication that can help him with this. He has been on Zoloft to help with his OCD symptoms and anxiety, and that has been beneficial. I explained to him that the medication that he’s been on is not designed to help with behavior modification, but that there might be medication available that can help with that. One of his problems is that when kids do or say something to purposely agitate or upset him, he blows up, and he’s not able to regulate himself. Then he ends up getting in trouble, and it becomes a vicious cycle, because it’s fun for the bullies to upset him. Suggesting to him that he “ignore” them does not work for him. He is not able to ignore them (in my opinion, they should not be doing it in the first place, but that is another issue).

I don’t know if there is a type of medication that can help him with his behavior. We’ll be discussing it with his doctor, but if any readers have any suggestions, please let me know. I’d love to have Nigel be able to attend the local public school, at least part-time, because it would mean so much to him. His new year’s resolution is to go back, and I want to help him achieve that goal.

An Open Letter to 2009

Dear 2009,

Welcome! We’re glad you’re here! 2008 was a hell of a ride, but don’t think that you need to do any one-upping to impress us. Not at all. We’d like it just fine if you can keep things mellow.

I suppose I should define ‘mellow.’ You see, in a house where autism resides, we already have a lot happening on a day-to-day basis. We have a 14-year-old autistic boy who learned to talk but has trouble regulating emotions and behavior, navigating social interactions, dealing with sensory integration, and understanding the purpose of education and how it relates to him. We have his mother who is trying to homeschool him and work two jobs and manages to write something, cook something, and clean the house every now and then. We also have his sensitive 12-year-old brother who is figuring out his place in all of this.

So by ‘mellow,’ I mean that we don’t need people getting lost or hurt, trees catching on fire, pets getting hit by cars, computers and – heaven forbid, the Xbox 360 – crashing, furnaces going out, or bouts of food poisoning. We don’t need any more loved ones dealing with cancer or getting in car accidents. You might be thinking that I’m being negative or critical of 2008, but I don’t mean to be. 2008 was in many ways a positive year, with some big forward strides, and we learned a lot. We are more resilient and capable. All things considered, we are happy.

And we’re looking forward to a great next year of life – a year full of goal achievement (including a graduation), enriching experiences (including a problem-free trip to the Grand Canyon), and even a new nephew/cousin! We have great expectations of you, 2009. And we think you’ll do just fine.

Best wishes,

The Teen Autism Household

In the ‘Just Trying to Be Helpful’ Category

melting ice cream

Aidan had finished dinner before the rest of us one night last week and had asked to be excused from the table (oh, doesn’t that sound great? Asking to be excused! He more likely said, ‘I’m done; I’m going to go to my room now,’ and I said, ‘Okay, remember to clear your plate’ – yeah, that’s how it went). A moment later, as Nigel and I finished eating, Aidan rounded the corner, coming back into the kitchen.

Aidan: I want to have some ice cream.

Nigel: It’s in the freezer.

Me: [gently chuckling, thinking – where else would it be?]  Thank you, Nigel.

Have a Happy New Year, everyone! Enjoy your celebrations, whether you’re kicking back at home or doing it up big. Just remember to put the ice cream back in the freezer!

Winter Break

Remember when it was called Christmas Vacation? It amuses me that even what we call our seasonal time off must conform to political correctness. But that’s okay. I actually prefer the name change, especially since I’ve been teaching this year, and I realize how essential a break really is.

One of the most common internet searches that points people to this website is “homeschooling autistic teenager.” I know this not just because my blog software tells me, but because I’ve typed that search myself. And I still do. I keep hoping that someone out there will have figured out the ins and outs of homeschooling autistic teens. And if they already have, I haven’t yet discovered their words of wisdom.

Winter Break gives me a chance to do a lot of things in addition to taking a break from teaching. I catch up on other work, like the work I do that actually generates some income (can’t let that slide!), I clean the house a bit, I try to visit with friends and family members who may be wondering if I’ve dropped off the face of the earth, and I make plans for the next school term. I have been homeschooling my autistic teenager for nearly a year now, and this is what I’ve learned.

  • Homeschooled autistic teens function best with a written schedule. We went without a written schedule for one term, and we won’t be doing that again. Not having a written schedule opens the door for numerous motivation and focusing issues.
  • Verbal autistic teens will debate with you the merit of any subject that they are not interested in learning. In fact, they will debate the necessity of formal education in general. They will demand to live how they want to live. This does not just happen occasionally. It happens every day. Yes – every single day without fail. You know that saying about the patience of a saint? It ain’t me. So I have learned to leave the room for a moment to get my bearings and remember that even though he is verbal, it doesn’t mean that I can reason with him. It doesn’t mean that even if we’ve already discussed the importance of education three days in a row that he won’t ask the same question tomorrow.
  • Autistic teens are individuals and have their own particular learning styles. My son is a visual-kinesthetic learner. I have taught him division by taking a pile of almonds and grouping it into sets of three to show how a number goes into another number. For years while he was mainstreamed he never understood this concept because math is not typically taught that way. I have also taught him how to multiply fractions by writing out the steps for him to visually refer to.
  • Autistic teens may need “crutches” to help with some concepts. I have used question marks in place of letter variables when teaching algebra to my son. After he learned how to solve the equations, he no longer needed to substitute the question marks in place of the letters.
  • What works one week may not work the next. Not only do you have to “think outside the box,” you have to reinvent the proverbial wheel on a regular basis. Inspired moments like teaching division with almonds won’t always produce the same “a-ha!” results when applied to other concepts. The almonds, however, do come in handy if you get hungry.
  • Homeschooling an autistic teen will stretch you – your mind, in coming up with innovative ways to reach someone who thinks differently and often simply does not want to learn; your patience, in dealing with the daily debates and the frustration of going over the same concept for weeks; and of course, your heart. Nothing else I’ve ever done is more of a labor of love than this.  

So take Winter Break, Spring Break, and Summer Break. In fact, take Friday Break also. Keep up your strength and safeguard your sanity. Take whatever breaks you can, when you can. Take Christmas Vacation, Halloween Rest, Easter Time-Out. Relax, regroup, rediscover. And then restart.

The Drive

Ugh. I did “The Drive” yesterday. The 700-mile kid swap. The boys get time with their dad, and I get time to get some work done. A week from today I have to do it again to go and pick them up.

In my lifetime, especially in adulthood, I have spent probably hundreds of hours and logged in thousands of miles on Interstate-5, “I-5,” the West Coast artery that connects the three states between Canada and Mexico. It passes through Los Angeles, Sacramento, Portland, and Seattle, among many other cities, for a total of 1375 miles. The landscape transforms from stretches of coastline into the urban sprawl of major cities, from flat agricultural areas into the higher altitudes of the Cascade and Siskiyou mountain ranges and the lush green of Washington. It connects millions of families spread out along its reach. Many of them were headed back home yesterday after Christmas gatherings. It was a bit crowded.

I was struck by the universal experience of it all – the traveling to see loved ones, the returning home afterward. I envisioned other families parting with hugs and well-wishes of safe driving, just as I hugged my kids there in the parking lot of the Carl’s Jr. before we got back in our cars and drove off in separate directions. We all experience these partings in varying degrees.

Before Nigel got in his dad’s car to leave, I hugged him and reminded him to watch for cars backing out of driveways when he goes for walks in his dad’s neighborhood.  “I know,” he said, but without his usual exasperated tone. Then he briefly made eye contact and said, “I love you, Mom.”

Shakespeare said it best – parting is such sweet sorrow.

Sharing the Gifts

gifts

Six months ago, Aidan graduated from elementary school.  On that day, I realized that not only was I proud of my own son for his accomplishments, I was also proud of his classmates. I had watched those kids grow up for the past six years, cared about them, and I shared with their parents the emotion of that special day.

Now, as we celebrate the holidays and this year comes to a close, I realize that I feel the same way about a different group of kids and their parents. I have been fortunate to get to know many families who live with autism. And I appreciate this connection so much. I love how happy I feel when I read about a non-verbal child who finds a way to communicate, or a teen attending his own IEP, or a child who is able to show empathy. I am awed by a teen’s insight in processing something emotionally difficult. And I feel triumphant when our children, no matter what age, are able to overcome sensory issues so that they can attend a huge birthday party, or even go to a nightclub! I feel as strongly about their accomplishments as I do about those of my own children.

These are the gifts that we share. I feel so blessed to have come to know all of you – those I mentioned in this post and many more. I wish all of you a beautiful holiday. However you celebrate the season, I hope it is filled with peace, love, and abundant joy.

Thinking Ahead

My younger son Adam, who is twelve, has recently discovered Bob Marley. He found one of my CDs from my college days (when I first discovered Bob) and it was love at first listen. Adam plays it day and night. He tells me that he likes the music, but also the lyrics. And I’ve noticed that, too. Adam seems even calmer and more introspective than usual. What I hadn’t noticed was that Neil had also started listening.

Last weekend the boys were very excited because The Day the Earth Stood Still was opening. They had recently seen the original and looked forward to comparing the new one to it. I told them that we’d wait until the following weekend so it wouldn’t be so crowded. Then I made the fatal mistake of writing on the calendar the day and time I hoped that I could take them to see it.  If it’s on the calendar, it’s in stone as far as Neil is concerned. It’s going to happen. And usually, it does. But that morning the schools had scheduled an emergency 2-hour late start due to bad road conditions, and that threw everything off for the day. Because Adam started school two hours later, I couldn’t go into work until two hours later. Consequently, I didn’t finish my work until two hours later than I normally do. By the time I got home, I could not do all I needed to do in time to go to the movies that evening, and we would go the following day, I announced.

Neil got upset. “But it’s on the calendar!” he yelled and began breathing heavily through clenched teeth, eyes wild as he quickly went into meltdown mode. This was not good. I had plans with a friend later that evening (something I had planned to do after the movie), and if Neil didn’t calm down, I wouldn’t be able to leave him. I tried reminding him about “Old Plan, New Plan.”  “That doesn’t work!” he yelled. He then took a wooden ruler and mutilated a piece of pizza with it. I could tell he was escalating. He went to the living room and broke one of my hand-painted pysanky eggs from relatives in Slovakia. I knew that my response was crucial – he wanted a reaction out of me, so I did not react. I calmly said, “Neil, pick up those broken pieces and put them in the trash.” And I think he was a little surprised that I didn’t yell at him about the egg, so he actually cleaned it up. He resumed his verbal tirade, but at least he stopped being destructive. Then I had an idea. An alternative for him. It was a “New Plan,” but I didn’t want to call it that.

It was risky, because I didn’t want him to think that I was rewarding him for his behavior. But what I hoped to accomplish was to help motivate him to regulate his behavior himself. Some would call it a bribe. But God knows that when you have to change plans on an autistic teen, you better have an acceptable back-up plan.

I sat him down and tried to look into his wild eyes. “Neil, here are your choices. You can be mad about not going to see the movie tonight, but that’s not going to make it happen. Or, you can calm down and come with me to the store to pick out a video rental and get some ice cream, and we’ll see The Day the Earth Stood Still tomorrow.” Then I got up and went to my room to get my boots and coat.

Adam followed me into my room. He looked at me. “Why does he act that way?” he asked with concern and sadness in his voice. “Honey, it’s because the autism makes it hard for him to regulate his emotions and his behavior.”

“Then how is he going to take care of himself when he’s an adult?” Adam asked in a sincere voice.

A chill ran through my body. I looked at him. “We don’t know if he will. But he’s learning; he’s trying. I think he’ll figure it out. And he can live with me as long as he needs to. So can you.”

I put my arm around him and we walked out into the hallway. Neil was standing by the front door, with his shoes and coat on. I looked at his face, and the wildness was gone, replaced by a look that I couldn’t determine. Remorse? Gratitude? Maybe both. “I’m ready,” he said. “Okay, I’ll get my purse and keys,” I said. As I walked off, I heard Adam quietly say to him, “I’m glad you were able to calm down.” And my heart filled with far too many emotions to identify.

A moment later, as I started the car, Neil asked from the back seat, “Can we listen to ‘Don’t Worry About a Thing’?”

“It’s called ‘Three Little Birds,'” Adam said.

“Sure,” I said, inserting the CD. And then we all sang, even Neil:

Don’t worry . . . about a thing . . . ‘cause every little thing . . . gonna be all right . . .

What It’s Like to Have an Autistic Friend

I’ve written before about Nigel’s quest for friendship and his need to be social. He has been fortunate to meet some patient and friendly NT kids through his involvement in Scouting. Continuing with the What It’s Like series, I wanted to highlight a couple of his friends and ask them a few questions. They are brothers; the older one is Nigel’s age, and the younger one is Aidan’s age. Here are their combined responses:

1) How long have you known Nigel?  3 years; 7 years

2) What have you heard or been told about autism?  That just because they have autism doesn’t mean they are stupid. In fact, in some ways they can be smarter than normal.

3) What’s it like hanging out with Nigel?  It’s always fun; awesome – he’s super smart.

4) What ways have you noticed Nigel acting differently?  He gets up close to your face (not all the time).

5) When you’ve witnessed Nigel have what’s called a “meltdown” – become upset about something – how does that make you feel?    It makes me feel sad; sad and guilty.

6) Have you ever witnessed other kids giving him a hard time or bothering him?   Yes; yes, many times.

7) What’s the most difficult part about having an autistic friend?   Getting him to understand; not to get frustrated with him when you want to say something and he keeps cutting you off.

8) What do you like about having an autistic friend?   He’s super smart and has a great imagination – super fun to play with; it’s never boring!

9) Any advice you would like to mention for other kids who might meet someone with autism, or anything else you’d like to add?   Be patient!

A big thank you to Nicholas and Tyler! I appreciate your time in answering my questions, but I appreciate you so much more for being such good friends to Nigel (and Aidan). Our family is very fortunate to know yours. Also, many thanks to your mom, Cheryl, for facilitating the interview. You guys are the best!

The Seven Year Itch

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.