brothers

When I started this blog years ago, one of the (many) things I hoped to sort out and document was the relationship between my sons.

What would it be like for Thomas to grow up with a brother who is different? Would Henry give a darn about his brother, when he didn't seem to care much for other children? Would we as parents be able to give both our sons everything they needed, when those needs might be quite different?

It's been very gratifying to watch these young men grow- they are now 11 and 6. While they aren't constant playmates, they are good brothers to one another. They are companions who watch movies together, wrestle and swordfight. They ask one another's opinion about what to watch, and share books and toys readily.

I feel that Tommy's more typical interests have had some influence on Henry; this fall when Miracle League baseball was over Henry surprised me by asking "what sport will I play next?" We were excited to find a special needs soccer league, "I can play soccer just like my brother," Henry exclaimed proudly.

And some of Henry's interests have rubbed off on his little brother. Tommy has become pretty adept at memorizing movie lines. Sometimes we will catch him reciting Spongebob scenes to himself while legoing. But mostly he recites the lines back and forth with Henry, having latched on to one of the best ways to interact with his big brother. He tires of it at times, however, while Henry never does.

There have been a couple incidents lately, that while I know are completely to be expected, still hurt my heart a little...

To watch a movie with Henry is quite an experience. Most movies he has seen countless times and knows all the lines by heart. During favorite parts he will hum and hop and flap his hands, right in front of the screen. And he will recite the lines with gusto, right along with the characters.

To those of us in his family, these habits are almost unnoticable. We'll ask him to sit down or move back from the tv, and sometimes ask him to quiet down so we can hear.

A couple weeks ago we were invited to a Halloween party with some other families of kids in Tommy's class. Henry mostly stayed to himself, watching a Disney movie (of course). But later in the evening all the kids were gathered in a playroom to watch movies together. The first was How to Train Your Dragon. I was relieved because Henry hasn't seen that one enough times to know it all by heart. When that movie was over, however, the hostess kindly let Henry choose the next dvd. He chose one of his favorites, A Bug's Life. Before long, Tommy came downstairs to find me and tell me that Henry was saying all the lines really loudly, wanting Tommy to say them too, and he was embarrassed. Ouch.

I told him that I totally understood. It was getting late, so it just seemed like a good time to leave. Everyone was fine with it, all of us had a good time at the party. But I have this nagging worry about how many other times something like this is going to happen.

Henry's bus stop was changed this year, and is now right in front of Tommy's school. This has made our morning routine really convenient- we put Henry on the bus and then just hang out for about 10 minutes until the bell rings for Tommy.

This morning started out great: the boys were saying a few lines back and forth, Tommy realized he had a Darth Vader knit hat in his coat pocket and asked Henry if he wanted to wear it. Henry said "yes" and Tommy proceeded to put it on his head. I said "that was nice of you Tommy" and Henry said "thanks Tommy." This is how things go with them really often: polite and considerate.

But today the bus was late. So we stood there and stood there. Eventually Tommy asked Henry to be more quiet. Eventually he said he didn't want to say lines anymore. Henry overreacted (as he does), got tears in his eyes, and started shouting "YOU ARE THE ONE WHO IS HURTING MY FEELINGS" and other things to that effect.

I can't sort out everything going on here. Was Henry getting anxious because the bus hadn't come yet? Probably. Was Tommy getting embarrassed because more and more cool older kids were walking past us on their way to school, and potentially noticing his odd older brother? I don't know if he was or my worried mind was just projecting that.

But it got kind of dicey. Everybody unhappy. That's life, I know. But I wish I could know for sure that those days will continue to be few and far between. I wish I knew just the right things to tell my kids so that they would always be tolerant of one another and proud of their differences.

Henry's birthday party

(Henry's in the Batman shirt. Grinning because he just pushed one of the instructors into the pit.)

Henry had a birthday party Sunday. While we've always celebrated his special day with family, this was a big first in that it was the first time he had indicated interest in having a friend party. Without, I hope, diminishing the glow of the event, I wanted to write a bit about it, and explain how this PDD-NOS birthday party might differ from the typical 11-year-old's party.

First, let's talk about how he "indicated interest" in having a party. When we turned the calendar to August, he started talking about how "next month will be my birthday".

"Yes," I agreed, "do you want to have a party this year?"

"Yes."

"You do?! Ok, where would you like to have it?"

"Wendy's Gymnastics, like Tommy did. I will invite all my teachers."

Quite different from the typical child, who may ask incessantly about having a birthday party for months ahead of time, and fret over the location and guest list.

(He wanted me to write "Batman the Animated Series" on his cake. As you can see, I could barely manage Batman.)

And so it was done. Around the same time he started talking about wanting to be Batman for Halloween, so a Batman party theme was easy to come up with. We invited all his classmates (rather than his teachers, which he undoubtedly would have preferred) and waited for the RSVPs.

And here's where I started to lose my grip altogether. I couldn't sleep at night, worrying that no one would come. Telling myself that Henry couldn't care less whether 1 person showed up or 20 still didn't ease my mind. I know he doesn't care about, well, friends really. But I wanted them to care about him, I suppose. I just couldn't handle the rejection, even if he could.

Henry didn't talk about the party much in the days leading up to it, which was a little disappointing (and again, unlike a typical child). But Henry just looks ahead to what's on the calendar that day, maybe the next day. If there's something big looming today, he doesn't look ahead until he gets past the next big thing.

Saturday afternoon was his first soccer game with a new league we found for special needs kids. He was pretty excited/anxious about that, and talked about it a lot Saturday morning. So it wasn't until Saturday evening that he started getting psyched for his party.

We went over being polite to his guests, and saying that you like a gift, even when you might not. I knew that would be an issue, since Henry's interests are so specific. He also mentioned more than once that he didn't want us to sing. Doesn't like the singing "Happy Birthday" part at all. I assured him that we would not sing.

By midday Sunday (the party was at 3), Henry was starting to really fixate on the presents. "Will they bring me presents?" Yes. "When will I open them?" After you all play on the gymnastics equipment for awhile. "I don't want to play on that gymnastics equipment. I've already played on it."

So when the first guest walked in, and handed Henry a gift, I said to her mom, under my breath "He's really worked up about the presents- I was thinking of letting him open them right away." She just shrugged and said "fine with me."

And so it was that Henry ripped open each gift as the guest arrived. It wasn't pretty, it probably wasn't classy, I didn't write down who gave him what. But he was able to move on and enjoy the rest of the party.

6 classmates ended up coming (out of 21 invited). One boy's younger (neurotypical) brother stayed also, and was a fun playmate for Tommy. So there were 9 children in all and it was a very nice group. I wouldn't say that Henry interacted a lot with the other kids, aside from the prompted "thank you for coming", etc. But the gymnastics instructors had him demonstrate the activities, and he had a big grin on his face the whole time.

We didn't sing happy birthday either- just cut the ice cream sandwich cake and dug in. I think everyone had a good time. I know that the birthday boy did- and that's what it's all about-- celebrating 11 years of Henry and his Henry-ness!!

Several kids gave Henry money for a gift, so toward the end of the party he started asking if we could leave and go shopping with his money! I told him that if he kept being a good host at the party, we could go to Target after the party was over. He ran back out and had an instructor help him swing from the bars, then ran back to me and said "what did you say I need to do to earn a trip to Target?" I reminded him: be a good host. And he was.

We went to Target that night and bought 3 dvds with his birthday money. It was agonizing to choose, especially since he still is so interested in the "papers" inside, and of course you can't know what papers are inside until after the movie's been purchased. But I think he was happy with his choices.

I like...

...that when I say "I have a doctor's appointment tomorrow afternoon" Henry responds with concern: "what's wrong?" He makes the connection that one goes to the doctor when one is sick. (But this time it was only a checkup.)

...that Tommy plays so gently and affectionately with his nephew. He may wish sometimes that he had a little brother, but a nephew is almost as good.

...that if we are not available to write things down for Henry (he likes to transcribe favorite sections of movies), he will now do it himself:

(This is the cast of Shark Tale)

...that Tommy pats me on the back (literally) and praises my lego creations, telling me that I'm creative. I know that "children learn what they live".

...that Henry wants to have a birthday party this year. This will be his first "friend" party since he was 2 years old.

...that Tommy was uneasy about going to Vacation Bible School without his brother (Henry had summer school that week). A big brother is a big brother, autism or not.

...remembering that we can change minds about autism, one interaction at a time. Last time we visited the dentist, the hygienist cleaning my teeth had gone to speak with the dentist, who was examining Henry. She said "your son is really wiggling in the chair." I explained that he has autism, and that, while it is hard for him to sit still, we are very proud of how far he has come with regard to the dentist, and that in fact he looks forward to our appointments.

"Autism?" she asked, "but he was talking."

I explained that autism is a spectrum and that, while some children do not have much language, others, like Henry, have unusual language patterns. Henry came into my examining room when he was finished, and proceeded to prove my point by talking her ear off.

"What's your name?"
"My name is Henry. I'm 10 years old. On my next birthday, I'll be 11!"
"What are you doing?"
"Are you counting her teeth?"
"Does my mom have any cavities?"
"I could be a dentist, Susan."
and on and on and on...

When I was finished, Henry followed Susan into Bill's examining room, and continued the conversation. She was charmed.

...that Tommy was completely brave when he had to return to the dentist for an extraction.

...that Bill calls me to tell me that Henry let Tommy have a turn on the computer, and could be heard cheering "you're no match for my brother Tommy, Gallaxhar!"

coming into his own

Today is Henry's last day of 4th grade. This time of year, with the end of school and changing of seasons, seems to invite nostalgia, or at least reflection on what has gone before. Like my friend Eileen, I am thinking about how far my son has come.

My niece graduated from high school last week, and we spent the day at her party Saturday. The whole family was gathered in a shelter house in a beautiful wooded park. There was lots of food, lots of wild play by the other kids, there were dogs and babies and it was HOT.

Henry did fine.

He did ask frequently about when we were going to leave, but by now we are quite used to fending off his verbal assaults.

For the most part he hung out with a book or two and his ipod.

And at one point my sister-in-law pointed out that Henry had made friends with one of the dogs. One of the smaller, quieter, mellower dogs.

Henry was happy to be solitary, but he was able to talk with other party guests (better with adults than kids) when they approached him. There is usually one adult in such a situation that really gets to know Henry (in this case it was my SIL's sister), and that relationship developed without any intervention from Bill or me. She just liked Henry. And he liked her.

He ate some pie, but stopped at one piece. OK, two pieces.

I told him on the way home how proud I was of him for "hanging in there". But it wasn't until the next day, when I really thought about it, that I realized- at an event like this 2 or 3 years ago? We either would have cut our stay short, or Bill or I would have had to sit with Henry and read, take a walk, go somewhere in the car, otherwise distract him for the majority of the party.

A few years before that? We would have had to worry about him pinching or scratching the other kids for being too wild or too loud or getting in his space. I would have watched him like a hawk, afraid he would grab the whole pie plate and start digging out handfuls of cherries.

And we probably would have had to leave with a crying noodle of a boy, making his little brother leave before he was ready.

I could give other examples from the past week: our good family trip to the zoo, accompanying Henry's class to the conservatory, Tommy and Bill's last soccer practice/scrimmage/handing out of certificates that went on for longer than Henry would have liked...

He is learning how to handle life, and so are the rest of us. It's a nice feeling. It's nice to feel like we are all coming into our own comfortable place.

ironic

I have gotten together a few times this year with a group of moms. Some of them have children in Tommy's class. (They have seen Henry at the kids' soccer games, they know about him. But they don't know him.) Of course we spend a lot of time talking about our children.*

A couple of these women have "challenging" sons. I haven't seen the boys long enough/in enough situations to gauge what that means- they are always sweet when I see them, you know. But they are kids that are "a handful" for their parents and teachers.

So at some point in the conversation a finger usually gets pointed at me and someone says "her son is perfect."

It's said in that way that women have... "well you don't need to diet" or "you have the perfect husband." Statements that try to disguise themselves as compliments but are really sharp little darts of jealousy.

They are the kind of statements that one can't respond to. You can't just agree "I really don't need to diet, you're right. I'm just the right size." But you can't try to argue the point either "are you kidding? Do you know how much I weigh?" Because that just prolongs the awkward conversation.

So I just smile kind of sheepishly and shrug my shoulders, maybe nod and say "he is a good boy."

But you know what I want to say, don't you? There are many things.

Tommy is a good boy. My other son Henry is a good boy too. But there were many teachers who didn't think so. Many strangers on the street, in the store, and at sporting events who didn't think so.

I would imagine that parents of other kids in Henry's classes didn't think he was "perfect"- if they even knew who he was.

Not that I would ever know what they thought, because I never really interacted with my children's peers' parents until now.

Tommy is a good boy. I wonder if his behavior is due in any part to the fact that his parents have learned a lot of things the hard way? Maybe Henry and his sister before him have cleared that path. Maybe we have learned to praise more and criticize less? I hope so. Maybe we have finally learned to abandon expectations and just welcome whatever this child brings to us.

Tommy is a good boy. Maybe he was just born that way. With an easy and kind attitude, a quick intellect, and a handsome face. Maybe it's just the luck of the damn draw whether you get a "challenging" kid or a "perfect" one. He could have been raised by bears in a cave and still been "perfect".

Perhaps our society is user-friendly to only the most narrowly-defined typical human specimens. And lucky for Thomas he so far seems to fit those parameters.

And then there's the most childish potential response of all: Yes, my son is perfect. Don't I deserve that? Don't I deserve to have an easy child? I don't love him any more or any less than you love your "ornery/difficult/challenging" children.

But that last one is pure blasphemy. I would never say that.

(*A topic worthy of a separate post is how easy it all-of-a-sudden is to be a halfway social person- now that I'm not the too-young-stepmom-with-an-inferiority-complex or the mom-of-a-kid-with-a-disability-with-a-chip-on-her-shoulder.)

Henry got on the bus this morning without his usual armload of books. That happened at least once last week too, and after the bus had driven away I wondered if it would pose a problem. Henry has a long ride to school, and would trouble ensue without all his books and papers? They provide him with both entertainment AND security. Why would he go anywhere without them?

Today I asked the bus driver "what does he do when he doesn't bring a bunch of stuff with him? Just hang out?" She shrugged and nodded. This woman has been driving Henry for years, and would definitely tell me if there was any trouble on the bus. "Hmmm" I said, "I guess he's just growing up."

Thomas wanted to know what the bus driver and I had been talking about. When I explained, he responded with a question: "Will Henry still have autism when he gets older?"

Gah. He didn't know what a loaded question he was asking. I hemmed and hawed, started and stopped a few sentences. I mean, the answer is yes. Henry will always have autism. But what Tommy was getting at is will Henry always be the same? And that question is not so easy to answer.

With the average 10-year-old, you can surmise pretty accurately that his interests will not remain the same throughout his life. With Henry, who knows? He may remain fascinated with Disney into his adulthood. Then again, his interest in puzzles has waned a bit. He went to school today without any books, movies, or papers in his hands. So he does change. On his own schedule and his own terms. I think all of us in the autism community, though our kids are wildly different, can say they have that in common.

The funny thing about talking to Tommy about this is, while he knows his brother almost better than anyone, he doesn't remember Henry at his most difficult. So it was odd for me this morning, to try to describe to Tommy how Henry used to be when he was 3-4-5 years old. Odd because I don't remember it that well either. Like I blocked it from memory. And also odd because it feels disloyal even now to talk about Henry like that. He used to scream a lot. All the time. We couldn't take him most places. He would scratch and pinch his preschool teachers. He would get mad when they tried to get him to work on something. Sometimes he would knock over his chair.

And now he sings and dances and brings home As and Bs from school. Now he's in the same gymnastics class as you. Now he wakes in the middle of the night worrying that he forgot to do his writing homework.

Yes Henry will always have autism. But that doesn't dictate who he will be.