Transitional Identity

For the past week, since my sons returned from visiting their father for seven weeks, I’ve had a new name. This happens every year, and I’m sure many people in joint custody situations experience something similar on a more frequent basis.

I am Dad-Mom.

Either of my sons will come up to me to say something and will address me as “Dad,” and then immediately correct themselves with “Mom” in the same tone. They do it so quickly, in the same breath, that it becomes one word: Dad-Mom. (The reverse is true when they first arrive at their father’s house for the summer visit; he is addressed as Mom-Dad for about a week.)

I love my transitional identity, and I love how the boys laugh when they say it. It only happens for a little while once or twice a year, so it’s special to me. And I guess it’s like payback for all the times I call them “Ni-Aidan” or “Ai-Nigel.” That happens all year long!

The Arte y Pico Award

Arte y Pico award I am truly honored. Mama Mara at Mama on the Edge has bestowed upon me a most prestigious award: Arte y Pico! Thank you, Mama Mara! The title of this unique award (pictured here in all its glory) apparently does not translate well to English (pico de gallo, anyone?), but it’s the recognition that I appreciate, especially from a writer who can cover the difficult events as well as the laughable ones. Her balance “on the edge” is remarkable.

Now, more about the award! The marvelous thing about it is that you pass it on! Here are the rules, per the official Arte y Pico site:

1) You have to pick 5 blogs that you consider deserve this award, creativity, design, interesting material, and also contributes to the blogger community, no matter of language.

2) Each award has to have the name of the author and also a link to his or her blog to be visited by everyone.

3) Each award-winning, has to show the award and put the name and link to the blog that has given her or him the award itself.

4) Award-winning and the one who has given the prize have to show the link of “Arte y pico” blog, so everyone will know the origin of this award.

5) To show these rules.

With that in mind, it is my pleasure to pass the torch (it sort of looks like one, don’t you think?) to the following:

Outta the Coop: where The Chick takes the ball-of-clay metaphor to new heights but also reminds us that there’s more to life than autism (and she’s got great taste in books).

Autism Family Adventures: where Bonnie wrote an informative and touching article on planning ahead. I appreciate her insight and ideas.

My Life with Autism: where Karla eloquently describes how the R word is like the N word. I also like how she posts tons of links to interesting articles on other sites.

The Quirk Factor: where Mommy Dearest has a category, called Jaysen-ish, of endearing/funny things her son says. Just like my Nigelisms!

Last, but not least, to Movies ‘n Stuff, where those of us who enjoy movies and TV shows can read great reviews about what’s worth seeing! I especially liked her review of Wall-E.

Best wishes to you all! Keep on doing what you do!

Calamity at Scout Camp

Sometimes a week is just too long. Too long to focus, too long to be socially appropriate, too long to make the right decisions. Too long for there to not be any problems.

Nigel just returned from a week at Scout camp, and for the most part, everything went well. His father also attended, facilitating appropriate social interaction and keeping Nigel on track with the regular Scout duties that he would sometimes rather shirk. But Nigel participated, helped cook and clean, and attended merit badge activities for environmental science, oceanography, archery, and camping. He did really well until the last day.

Nigel, like many autistic individuals, is an animal lover. He loves our cats, his father’s dog, and the rodents we’ve had, including his very own mouse. He loves animals of most kinds, including fish, birds, and reptiles (insects, not so much). And so he was nearly obsessed with the birds’ nest that was at the Scout camp. There were baby birds in it, up in a tree, and all of the Scout groups took turns going to observe the nest. Scouts and adult leaders alike enjoyed watching the baby birds and their parents. Nigel, more excited than most, decided that he wanted to hold one of the babies.

Well, I’m sure you can see where this is going. In his attempt to retrieve the nest, it fell to the ground. Afraid that he would get in trouble, he left the scene. Everyone at camp soon discovered that the nest had been knocked down and the babies had died, and they all wondered who was responsible. Nigel’s dad had a feeling, so he privately asked Nigel if he had done it. Nigel, visibly upset, admitted his terrible mistake.

It pains me to think of my poor son in such turmoil, berating himself for not thinking about the consequences of his actions, feeling such guilt and remorse that he caused himself to projectile vomit because of his nerves. He has made mistakes of this magnitude before, and after dealing with the consequences, I’ve always assured him that making mistakes is part of growing up, that we all do it, autistic or not. He often blames his neurological difference, saying, “It’s because of the A word. I have a defective brain.” Telling him that different does not mean defective doesn’t seem to help much. I hate that “the A word” causes him to devalue himself.

And so we get through the day – the week – with another “learning experience” under our collective belts. Some weeks there’s just more to learn, I guess.

Army of Advocates

I’ve been thinking lately about this army that I’ve been part of for almost eleven years. The first few years I was fighting the autism itself, grasping at therapies and treatments when there wasn’t much out there, as far as resources and current information. And, in my state of shock, I was referred to an excellent agency called Child Development Services. They had current information. They helped my son, those speech therapists, occupational therapists, behavior consultants, and autism specialists. In my mind we were fighting the autism. I wanted things to get back to normal.

Then I realized I had to find a new normal. I realized that my son wasn’t going to “grow out of it.” He would progress, he would slowly, painstakingly learn to talk, he would gradually learn to filter the sensory input that often caused him to scream and writhe in public. And my fight changed a bit. I tried to mainstream my son, and I came to feel like I was fighting the school district. He had an educational assistant (two, sometimes); we had weekly meetings during which his teacher actually rolled her eyes when discussing my son; I came to the school and found him running around the halls aimlessly. This was not a new normal that I could live with, so we switched schools. Again.

Now I’ve accepted that the fight will continue indefinitely, but it continues to change. Now that I’m homeschooling, I don’t feel like I’m fighting the school district, although I should have. In the space of his last six weeks there, they suspended my autistic son twice, for behavior that he could not control. Part of me wishes I had taken them to court, but I didn’t have the time or the energy, really. And my younger son had to still be enrolled in that district, to stay with his friends. I had to consider his needs as well.

We are all still fighting. We all have our own crosses to bear. I once read or heard an analogy that if all the people in the world were lined up next to each other, and we could put all our problems in a suitcase and set it in front of us and then trade suitcases with someone else, in the end we would pick up our own suitcase and carry on with that. Some of us are fighting the autism, some of us are fighting the school district, and some of us are fighting the ignorant public, trying to find a place in it for our kids. A place of acceptance and a place of dignity.

So here’s to all of us who pick up our own damn suitcase every day and continue on. We may not have enlisted in this army, but we believe in the cause, and we’ll keep fighting.

5 Best Comeback Lines for Comments or Stares

We’ve all had the experience, especially those of us who’ve been in the autism trenches a while, of dealing with unsolicited comments and stares regarding our children’s behavior. It’s hard to believe that people could be this hateful with all the struggles we go through as a family, but It comes with the territory. Sometimes others’ reactions are minor enough to let them roll off our backs; other times they’re so caustic that we cry over it later. And it’s later that we always think about what we should have said to those people, or what we wish we had said, or thought to say. Sometimes the situation is so bad that you can’t come up with anything except “I’m sorry for the disturbance. My child has autism.” That’s what I’ve resorted to many times, feeling exhausted and defeated, ready to start screaming myself.

Well, no more! I’ve decided that unless my son’s behavior is harming someone or damaging property, I am not apologizing any more! Yeah, right. Easier said than done. But instead of leaving a situation wishing I had thought up a witty retort, I’m doing it now. Here, then, are the five best comeback lines for unsolicited comments, stares, or “advice.” This is just a start! Please, feel free to add to the list. I need all the help I can get!

5. “Got autism?” (I admit – I saw this on a T-shirt.)

4. “What? You’ve never seen autism before?”

3. “We didn’t have a social story for this.”

2. “This is Teen Autism coming to you live from ______ ! [insert name of location of incident]”

Okay, here it is . . . the Number 1 Comeback Line for Stares and Comments . . . wait for it . . .

1. “Too bad Michael Savage isn’t here. He’d know what to do!”

*UPDATE Oct.’08: You can also now substitute Denis Leary for Michael Savage! Even better!

To Catch a Fly

We learn much from our formative elementary school years, probably more than we realize. I have written previously about how it was in elementary school that I learned about disabilities, and the negative way that some children react to them. But there’s something else that elementary school taught me about living with disabilities, something that I only recently comprehended.

At recess and during P.E. we often played kickball, among other things. It was baseball without the bats and gloves. Not having much athletic ability beyond being a reasonably fast runner, I was among the last few chosen for teams when everyone was required to play. I couldn’t kick very far. It really didn’t bother me, since I had no desire to play. But what I remember most was when one of the heralded elementary school jocks – the future varsity team members – came up to “bat,” every one of the fielders started to back up, giving him a wide berth. These eight-year-old, would-be high school stars could kick far. The fielders called out to each other, “Go deep,” in a respectful, cautionary tone. That would be the only way they could hope to catch his fly ball. I learned early on that in some circumstances, to handle the difficulties that life throws your way, you have to pull out all the stops.

Life with autism is like that. If we hope to deal with the lifelong challenges of autism, we have to “go deep.” We have to tap our reserves, focus, and be prepared. We learn to anticipate, listen to our intuition, and be aware. But we also have to go deep within ourselves to summon our strength and find our courage. I may not have been able to kick the ball very far, but I learned how to catch it when it was coming my way. Sometimes, you have to back up to catch a fly.

One-On-One

Nigel is at Scout camp this week with his dad, which is something they did last summer that they enjoyed. I’m glad that his father was able to do it again with him. It allows them to have some one-on-one time, and now Aidan can have some one-on-one time with me.

One-on-one can be an elusive (my euphemism for nearly impossible) concept for single parents, especially any whose other parent lives seven hundred miles away. But one-on-one time with parents is so important for kids. It makes them feel like a priority when their parents have carved out time for them, and it teaches them to do the same for people in their lives as they get older. In special needs families, the typically-developing children often feel like they are fending for themselves because their parents need to spend so much time tending to the needs of their sibling, going to therapy appointments, doing damage control. Often, the siblings take on some of the damage control themselves, or they take on more responsibility around the house. Aidan has on several occasions told me that he feels like the older brother, even though he’s younger. He’s had to explain his brother’s behavior many times to peers, and has done so with patience and respect. I have extolled his virtues and those of other siblings in a previous post, and I will continue to.

So this week is Aidan’s week. We are watching all six of the Star Wars movies, one each night, and today I rented a video game for him that he had a lot of fun with (Lego Indiana Jones). We bought a pint of raspberry sorbet for dessert, and we made plans to go river rafting on Saturday. As we sat on the couch tonight watching our movie (we’re on Episode 2), he leaned up against me and began gently, methodically scrunching handfuls of my hair in his palm. He has done this for years, I think as a bonding ritual that appeals to his tactile sensitivity. After a minute of doing so, he said, “I’m so happy to be able to squeeze your hair again, Mom.” I told him I’m glad he can do it again too. I’ve missed it, among many other things.

The Boys Are Back in Town

My sons returned late Saturday afternoon! The longest time of not seeing one another (seven weeks, two days) is over! And now, Nigel and I stand eye to eye, nose to nose. Aidan, with his short hair and deep tan, I hardly recognize. But I know their scents, and their embraces. It’s so good to have them home.

This was their seventh summer in LA with their dad. In previous years, they have also visited him for one- or two-week increments at Christmas or Spring Break. Usually I drive five and a half hours to a junction just north of Stockton, California, which is near the half-way point between my house and their dad’s house. Their dad meets us there for lunch, and then we transfer suitcases and bags, sometimes bikes and skates, into the other car. And then we transfer kids. I call it the 700-Mile Kid Swap. Then I turn around and drive five and a half hours back home. It’s a hell of a thing to do six times a year.

So my son’s young lives have been filled with many good-byes and as many reunions. It is a different way to grow up from what I experienced; my parents remained married throughout my childhood. I had friends whose parents were divorced, but in southern California, the other parent was never more than an hour’s drive away, not eleven hours. I often wonder about the emotional long-term effects of this arrangement on my kids. I know it’s hard on me, and I’m an adult. Aidan once said to me, when he was seven, “I feel like I have two lives.” Kids shouldn’t have to feel that way.

But it’s important that they maintain a good relationship with their father, and I think in the long run they’ll realize that we did the best we could to achieve that, given the circumstances. The 700-Mile Kid Swap has taught them flexibility and patience, two skills that are invaluable for autistic kids, and difficult to learn. They’ve had many great experiences in LA that have enriched their lives, and they’ve learned to appreciate and adapt to a different environment. It’s not the typical joint custody arrangement, but for the most part, it’s working.

As for me, I’m just glad they’re back. I’m going to get some more hugs right now . . .

For the Love of Toys

The Christmas that Nigel was two, he found the toy hiding place. Yes, early on that boy was probably skeptical about Santa.

I had been on the couch breast-feeding four-month-old Aidan, and out of the corner of my eye I saw Nigel coming out of my room with an odd look on his face. I somehow knew that he had found the toys in the closet. I stood up with Aidan still on my breast (I got very good at that) and walked down the hall to where Nigel was standing. He walked back into my room and stood in front of the now-open closet and said in a flat but certain voice, “Toys.” Much to my surprise, not only had he had spoken (which he rarely did then), but he had also not taken any of the toys out. They were still neatly stacked in the closet where I had put them.

“Yes, those are toys,” I said. “But those toys are for Christmas, and if you open them now, then you won’t have any toys for Christmas.” It was a shot in the dark. I was expecting a full-blown tantrum, mostly because I figured of course the two-year-old wants the toys! But also because I figured there would be no way that he could comprehend what I had said to him.

After I explained about the toys, I closed the closet door, and much to my shock, he just quietly followed me out of the room. I asked him if he would like to watch a Disney video, and he got on the couch with the utmost compliance. It was as if he understood what I had told him about the toys and accepted it! I was floored!

Toys are rather magical things. They can prompt an autistic two-year-old to talk, and they can motivate his behavior in anticipation of receiving them. For years, they also served as therapy objects, teaching him how to play, how to engage in social behavior, and eventually encouraging spontaneous speech.

I wrote this post today because I had noticed several incoming searches for toys for autistic teens. I think the rule of thumb with what would be appropriate is along the same lines as my advice for books for autistic teens: it depends on their cognitive level and individual interests. The difference with selecting toys is that it also depends on their level of emotional maturity. Nigel, for instance, is fairly high cognitively, however, his emotional maturity is a few years behind his peers. I think this is why, going into eighth grade, he still loves his stuffed animals and toys from his favorite movies (Jurassic Park dinosaurs and Thomas the Tank Engine). He is really not into video games, but he’s always had an interest in science, so he has a microscope, telescope, chemistry set, and volcano model. He is also entertained by robots and remote controlled cars. And Lego. That has to be his all-time favorite toy. I don’t think he’ll ever outgrow it! He hasn’t outgrown looking in closets for toys, either. I’ve had to get really creative as the years have gone by.

Teen Autism

Life in the Different Lane