What's Love Got to Do with It?

The other day at Liam's IEP, his speech therapist mentioned that she had seen his lunches. She commented on how nutritious they were (I knew someone was checking) and how "they are made with such love". I laughed about this later because every night, when I am making those lunches, attempting to address two children's quite different personal preferences, nutritional requirements and allergies, the words I'm muttering under my breath have nothing whatsoever to do with love.

Yes, We Can!

Am I a community organizer? If so, then I am in good company and proud of it.



I have always had a fantasy about banging my fist on a desk in a congressional hearing, like one of those writers who refused to testify in the HUAC hearings. I have always been incensed and personally offended by injustice--just not enough to take action. I had a cause inside me; I just didn't know what it was until I had Liam.


Tonight at a school board meeting in a conservative, affluent area, a resolution was passed about ability awareness. This resolution won't make headlines. None of the moms in line at Coffee Bean tomorrow morning will be talking about it, but it is important. A fundamental shift has occurred. I am neither exaggerating nor bragging when I say this passage was due to the efforts of special ed parents. I wouldn't say we fought, but we organized, we talked, we met, we walked, we vented and we worked.



We were talking before anyone wanted to listen and we were showing before anyone wanted to see.


We showed educators that we, better than anyone, know how to include our children in society and one effective way is through the celebration of our diverse abilities and gifts. We showed students and staff that they can have fun while learning about how we are different, how we are the same and how we can help each other. We showed ourselves that when we just show up and have each other to lean on, we can change minds. And we did.



Liam, I did this for you. Maybe you just moved one seat closer to the front of that bus.

Things Fall Apart

It's time to admit that Liam is regressing again. Last week, his behaviors in school were so bad that we were called to come get him and take him home. He had done something so heinous I can't even detail it in this public of a forum. Suffice it to say that he is no longer allowed to use pencils. Every day Liam comes home with a color-coded behavior chart. It had been quite effective for the last year. The morning after he had been sent home, Liam said to me, "Wednesday wasn't even colored in." I said, "That's because what you did is so bad they don't even have a color for it!" He told me he would behave in January "when Mrs. C comes back."

Now, there is of course the hurt and disappointment of him becoming aggressive again. More importantly though, he is in a fight or flight mode. Something at school has him so backed into a corner that he can only fight his way out. I know this because I have seen it before. The only explanation he is capable of giving me is that he misses his teacher. The truth is that his behavior started backsliding before she left--specifically when he started his new school year to find his class size increased by 50%.

Another complication is the school sending him home. I told the principal to "expect the same behavior tomorrow when he feels like going home." People with autism are even more creatures of habit than us neurotypicals. What happens once will happen again. Patterns, once established, will be followed. Sending him home was such a bad choice on their part that the damage will take months to undo.

Like last time, the behaviors that start at school eventually spill over into the community, then home. After a lot of thought and prayer (and power struggles with Liam) I've decided to leave him home with Rob while Zoe and I go to church. It is so important to me to provide him with a faith foundation that I have subjected the other parishoners to his disruptions for far too long. I kept trying because he has a history of being successful in church; I knew he could do it. He is so loved and embraced there that it just kills me to lose this battle.

The only good news in this otherwise dark period (because I have to look for it in order to maintain my tenuous grasp on sanity) is that I found another tool for our Liam toolbox: The Incredible Five Point Rating Scale. This book jumped out of my bookshelf that night when I was putting something away. I had ordered it and never read it. Rob and I both read it that night and developed an anxiety scale for Liam the next morning. He understood it right away and was able to put it to use! What I really like is that it encourages self-advocacy. He can label his own levels of anxiety and attempt to control them with suggested methods.

For whatever reason, Liam's next two days at school were super and the weekend has been good, too. I have called an emergency IEP, though, to address behavioral regression and concerns about speech services. I will say more after that is resolved. I have some research to do before the meeting.

Touch of Evil

I have read the reports and the blog postings and heard the stories. I thought I lived in a community that was so tolerant and compassionate that it wouldn't happen to me--to my son. Today it happened.

We had a busy morning and Liam had behaved extremely well. His behavior was beyond reproach at the YMCA Child Watch and Trader Joe's while we did a week's worth of grocery shopping. Of course I praised both kids and planned to reward them with their favorite tv show. I made the mistake of pushing the limits by stopping by Ralph's for a few items. While we waited at the deli counter, Liam started to lose his cool by screaming--a high-pitched toddler-style shriek. I did my best, but he ran screaming down one of the aisles to face a woman in one of those electric riding carts. As he turned around to run back to me, I heard her say, "You should put him on a leash." Oh. No. She. Didn't.
I dragged both kids by the wrists, pushing my cart while chasing her. "Excuse me," I said when I finally caught up. Those electric carts are suprisingly fast. "Um, yeah, I heard your comment and I just want you to know that my son has a disability called autism. . ." "I have a disability," she snapped, before I could finish. "Yes, well, I don't need your parenting advice. I'm doing the best I can and if you think you can do better, you're welcome to. . ." At this point, she started yelling, "Shut up shut shut up!!" Oh. So that's how it was. I was dealing with crazy. Liam started giggling at her outburst and she snarled, "Look at him laughing--the idiot!" I swear to you this really happened. It had taken every ounce of self-control not to follow my impulse to strike the side of her fat head with my fist. I just know you can't fight crazy with crazy. I said, "Clearly you're not going to understand" and turned to leave as she yelled, "Put him on a leash!" I was shaking as I made my way to the front of the store.

I told a grocery cashier that I had just had an ugly encounter with a fellow customer and didn't know if it was over. The cashier turned to get the manager, only to notice that he was engaged in an ugly encounter of his own. We could hear her ranting at him "you shouldn't allow people like that in this store", "he could have knocked my cart over" blah blah blah. As she passed behind us to leave, she yelled, "Scum!" at us. I still wasn't leaving without my fucking Diet Coke. The manager apologized to me and said that when he suggested to the woman that maybe she should have stayed home today, she turned her insults on him. The cashier told me they had also seen her have an altercation at the deli counter earlier. All through this, Liam held it together perfectly.

Two things:
1. Why did this happen? I always try to look for the truth and the lesson in what happens to me. I'm not seeing it.
2. How do I undo it? How do I make my kids forget that they saw and heard evil in the frozen foods aisle? How do I explain to them why an adult would call a child an ugly, ugly name?

I know in my head that it wasn't personal, that it wasn't our fault, that this woman was not in her right mind. But in my heart, it still hurts to remember someone spitting venom and hate at my little boy.

The Show

We finally had the big show--a showcase put on by the drama group we've been working with. All the kids participated in a couple of free-form dances to live music and a number called, "The Magic Men". Liam and his friend were perfect! They did exactly what they were supposed to do. I know Liam was really happy afterwards, although I don't think he knows what a big deal it is to perform in front of an audience.

I was disappointed that no one noticed Liam's handmade cape and expressed disbelief that it only took me nine hours.

The director had asked me to speak about my experience parenting a child on the spectrum, so I prepared a speech. I hope it went over well. During a dress rehearsal, I made the dance teacher cry, which was not my intent. We have met a new family who has a daughter on the spectrum and they agreed with my sentiments. Their daughter danced beautifully with the other kids and seemed like she was having a good time. I can't wait to see what we do next with this group. There is no limit on what these kids can do--all of them.

Say Cheeeeeese!

Yesterday we went to church to get our family portrait taken for a new church directory. I am not a fan of studio portraits, but we don't have even one photo of our family together. I thought it wouldn't hurt to see what they might come up with.

Liam is notoriously uncooperative with photos. For our annual holiday card, I usually have to take up to 100 shots to get one where both kids are looking at the camera. Occasionally, you can get a candid of him where he is gazing into the camera with those magic blue eyes that see through to your soul, but the posed ones are problematic.

The photographer at the church was kind of an ass about Liam. He kept asking, "HOW old is he?" incredulously and warning us that he couldn't get any good shots because Liam wouldn't look at the camera. Liam was doing his best after a very long day, with numerous demands placed on him, and the guy was getting on my last nerve. I finally said, "How about you just do your best and we'll see what we get?" I think that for Liam, it simply doesn't make any sense to plaster a fake smile on your face while you stand in an awkward position while a stranger waves a stuffed elephant at you. Remind me: who is the one with the disability? 

I Had a Dream

I had a dream. . .

that we all went shopping together and bought a new country. We paid full price, but we got good quality this time. The old one was frayed around the edges and looking very dated. We didn't get to try the new one on, because it was a communal dressing room and we were embarrased of our cellulite and saggy ass. Still, we are hopeful that when we start to wear it, it will fit us perfectly, look fabulous and make all the other countries jealous.

My Interview

Here is a link to my recent interview with Patricia Robinson, a therapist who works with individuals on the autism spectrum.

The biggest event for our family lately had nothing to do with autism.
A very dear friend passed away after a two-year battle with stomach cancer. This is my first time (at age 39) experiencing the death of someone in my peer group. As this friend left behind a lovely and loving wife, as well as a 4- and 5-year-old, it is something that touches our whole family.

The kids, of course, have had a lot of questions. "Where did S. go?" "Did he live a long life?" "Is his cancer gone now?" "Are his kids sad?" We took them to the funeral, hoping to show them how our faith community demonstrates love and support in times of sorrow, as well as celebration. Zoe even asked to attend the burial and, after hesitating momentarily, I took her. She was curious, not missing a detail, asking her usual myriad of questions. After the family had tossed flowers into the grave and we walked somberly away, she said, "When do we see the body?" "You're not going to," I answered, "Are you disappointed?" "Yes," she said, "I wanted to see it." I explained to her that our friend had gotten very sick in the last couple of months and that I thought it would be better if she remembered him when he was well. I had said good-bye to him on the night he died and was struggling to remember him healthy and strong.

Liam has been perseverating on this tragedy and I've been afraid he'll say something inappropriate to our friend's wife and children. So far, nothing beyond him fingering the large, smooth wedding band on a chain around V.'s neck and asking, "Whose is this?" although he already knows. In defiance of his own disability, Liam has been more focused than Zoe on the emotions of those left behind--what they feel and for how long they may feel it. "When will they stop being sad?" he asked me. In all honesty, I had to answer, "Never."

This is how you repay me?

I have not posted recently because there have been some ups and downs for Liam at school and I'm never sure how much is safe for me to write about publicly. I'll try to be as cryptic as possible.

Liam's beloved teacher went on maternity leave a couple of weeks ago. He seemed fine the first week--a pleasant surprise. Then his behavior started to unravel. One day I got a behavior report that made me very nervous. It was a full page of handwritten notes about Liam's noncompliant and aggressive episodes that day. We hadn't seen behavior that troubling in about a year.

So I did what I do. I sent my brain into overdrive, consulted with friends and professionals and talked to Liam. All I could get out of him was that he missed his teacher. He missed her so much, in fact, that he had to make it clear to me that he wouldn't miss me if I were dead and indeed wished for my life to end. "I won't miss you when you die," he said to me between sobs, "I hope you die right now." Just so there's no confusion.

I think everyone knows I am not about being a martyr. I am not asking my son to thank me for working an unpaid job by being his full-time advocate, teacher and therapist. I am not asking him to tell me he loves me. I am not even asking for his affection, as nice as I can imagine it would be. Is it too much, however, to ask that he doesn't actively pray for my death?

It is useful to have a sense of humor about something that would otherwise rip your heart out. That's why I find it funny that he takes out his frustration on the person who holds his world together. Nor is it lost on me that I have the same tendency. It's also funny (or ironic--I'm always confused about what exactly irony is) that for so many years I prayed that he would talk, that he would express his feelings with words and he now uses those hard-won words to berate me. Also funny: if my job is being his advocate, then isn't he my boss? If a boss ever talked to me like that, I would quit. I can't quit on this person who hates me and wishes I were dead because all I want is for him to be happy.

So here we are. After Liam had calmed down, I hugged him and told him I loved him. "And it doesn't matter if you hate me," I added, "Love is stronger than hate." "Yes," said Zoe, "it's like Martin Luther King, Jr. said: 'Hate cannot conquer hate. Only love can do that.'" She then retrieved her little paperback biography of MLK to show me the source. Of course she had it right.

Drama Queens

I have previously mentioned a drama workshop we tried. It was a little rough in the beginning, but if we're being honest, what isn't with Liam? The main challenge was that I spent half the time chasing him into the parking lot. During the week, when he asked about going back to drama class, I said, "Only if you stay in the room. When you leave, you are telling me you don't want to be in drama class."

Apparently, he enjoyed the class enough for my threat to work. Last week, he not only stayed in the room, he participated for about 80% of the class. During an exercise, where the kids were asked to address their peers as a group, he got up and did just that, gosh darn it! Then my son--my son--participated in a dance and a singing activity. I do not have any scientific data, but I can tentatively say this shit is working. To get him to mimic movements and follow along has always been a huge hurdle.

What's almost as exciting is that based on Liam's success, the director of the program wants to change the focus to specifically address the needs of kids on the spectrum. My friend Lisa and I are helping her. Lisa brought Landon for the first time on Saturday and he did really well. He was happy and Lisa was pleased. "You've stumbled onto a gold mine," she told me later. We are both so excited about how we can use dramatic play to improve our boys' social skills, spontaneous language and executive function. I always knew drama would be good for Bee, I just couldn't find an appropriate program. It looks like we are helping to create one.

One of Liam's current cringe-worthy behaviors is putting his hands in his pants. He pulled his penis out at drama class, but I think I caught him before anyone noticed. Penis playing does not fall under the category of "quirky behavior that doesn't hurt anyone". It falls under the category of "batshit-crazy-sends-people-running" behavior. I've been trying to keep it low key. I ignored it at first (unless we were in public, where I surreptitiously moved his hands) and then started saying, "You can do that in your own room by yourself."

Many years ago our friend Chris had a wonderful dog named Toby, who was like a big brother to our dog, Sammy. When Toby would lick his balls, like all male dogs tend to do, Chris would say, "You do that on your own time, Toby." That always struck me as so funny. Like Toby was on the clock. Anyway, it came to mind and now I find myself saying it to my son when he puts his hands in his pants.

R Rated Halloween

Zoe had been asking me for vampire fangs. The kids had behaved well all that week, so for a treat I took them to a Halloween store. It's one of those seasonal ones that sets up in a vacant store space. I didn't realize that by entering it, I might scar them in ways I couldn't have predicted.

When we entered the store to search for vampire fangs, we were immediately assaulted by some "adult" costumes. Nothing pornographic, just tasteless and tacky. I steered them away from that section, only to be confronted (at kid eye level) by a set of plastic boobs. "Oh!" Zoe exclaimed, followed by, "Oh, Mama. That is totally not cool." Liam then grabbed the boobs, one in each hand like a pro, gave them a good squeeze and we moved on.

The Littlest Pilot

Several months ago, I had the opportunity to sign Liam up for a program called Challenge Air. This group takes kids with disabilities up in small planes and allows them to fly! I was a little nervous about it and expected Rob to veto it. To my surprise, he was excited.

Up to two people can accompany the child in the plane, which presented a dilemma: who would it be? I wanted to do it. Rob wanted to do it. Zoe wanted to do it. Practically speaking, I had to think about the worst that could happen. Rob and I couldn't go and leave Zoe on the ground by herself in any event. If Zoe and one parent went up, the other parent could be left alone in the event of a disaster, which is unthinkable. Also unthinkable was sending the two kids up together.

I hit upon the idea of inviting my dear friend who is very sick with stomach cancer. When the big day arrived, however, he was too sick to go. I decided that my own stomach probably couldn't handle the turbulence and sent Rob.

Challenge Air makes the "fly day" into a big party with a bouncy house, a clown, face painting, music, food, etc. Dozens of committed volunteers make sure the day goes smoothly. We were lucky; Liam got called right before his scheduled time. Some kids had to wait two hours after their appointed times, due to a shortage of pilots.

Rob and Liam crawled into the small (and surprisingly ragged-looking) plane. Liam had to wear large headphones, which I knew could present a problem for him, but he kept them on until landing. Zoe and I waved until the plane was out of sight, then waited about 20 minutes for them to return. When I asked the pilot if Liam took control, he said, "Boy, did he! Some kids are afraid to touch the controls but your son had no problem." Apparently, the plane did a lot of bouncing around while Liam flew. We were all so excited for him, but like Liam often does, he took it all in stride. I've seen him much more worked up about seeing two poodles at the local shopping center.

I'm still glad we took him. "Do you think you might want to be a pilot?" I asked him later. "Could I be a pilot?" "Yes. You can be anything you want." "I will be a pilot then," he answered. He hasn't mentioned the experience since, unless we've brought it up. But maybe he will always remember the day he got to look down on the world far below him.

I Hate the Baby

Liam's second week of school contained some bumps, some revelations and some detective work. His teacher had told me that she was having some trouble getting Liam to do his work--nothing aggressive, or disruptive, she said, just good old noncompliance. I felt partially responsible for not making him stick to a schedule of schoolwork every day of summer's eight weeks.

I was not surprised by the few "warning days" that had come home in Liam's behavior report, but I was taken aback by one of the notes that accompanied them. "Liam hit me in the stomach today" his very pregnant teacher had written "and said, 'I hate the baby'." This was quite a change of tune from my son. He has been so interested in his beloved teacher's baby that you would think it was his own sibling. He says he thinks it's a girl and has suggested a name (Annie, from his favorite movie). Several times during the summer, when we'd talk about going back to school in the fall he'd say, "And the baby will be there!" clapping his little hands with glee and jumping up and down. He had told me at one point, "I'm going to be there right when the baby comes out!" When I relayed this prediction to his teacher we both had a good laugh, imagining just her husband and my eight-year-old son in the delivery room. I was certain he thought that his teacher would have the baby and come back the next day with her newborn in tow, ready to begin class as usual.

As I questioned him as to why he would do such a hurtful thing, I remembered that I had to ask the right way. Finally, he said, "Mrs. C. will leave when she has the baby. She will be in the hopsital [sic]for a week." I realized that Liam had figured out what we were all afraid to tell him, for fear he would obsess over it for the duration. "Yes, she will have to leave for awhile," I told him, "How do you feel about that?" "Sad," he answered, " I will miss her." "OK, " I said, "That's OK. That's normal to be sad and miss her. You need to tell her that. It's allright to say it; it's not allright to hit." I made him write her an apology note. We talked more about his feelings and how to express them.


The next morning Liam began to act out again at school, giggling inapproriately. His teacher used this as an opportunity to explain to the class that she would be leaving and how everything would work in her absence. Liam has had no further incidents.



The other night, as I was putting him to bed, I asked Liam what he was thinking about. "Mrs. C. is leaving," he said. "I will miss her." "I know, buddy," I said, holding him, "I know."

First Day of School

Yesterday was Liam's first day of second grade and it seems to have gone very well. He came home happy and had good behavior all afternoon and evening. His favorite part of the day was a visit from some surprise guests. A couple of sixth-grade girls had taken an interest in Liam last year and two of them even came to his birthday party, as I mentioned in that post. He talked about them all summer and kept asking me to call them for playdates, but I didn't want to bother them. He had asked about them recently and I said, "Buddy, they're going on to middle school. I don't think you're going to see them again." Apparently, I was wrong. "His" girls showed up at the school yesterday morning to see him. He must have been ecstatic. Rob said he was so happy he couldn't even look at them. My gratitude goes out to these extraordinary young ladies who would take the time to make a little boy's first day of school extra-special.

The R Word

I was going to stay out of this particular fracas, as it seemed like the kind of thing that didn't need any more attention paid to it. A lot of the blogs I read have weighed in on the issue, which is whether or not to boycott Ben Stiller's new film, Tropic Thunder. (I won't link to it for reasons made obvious later.)

Then I read some of the comments on an entertainment gossip site. The majority of comments were supportive of the film. The clearly intelligent, informed and sensitive readers of Perez Hilton offered up such wisdom as "I still want to see it. I love Ben Stiller. Im sure its not that bad. Those people need to quit being so friggin sensitive. " and "iM SEEING IT! PEOPLE ARE jUST TOO DAMN SENSiTiVE NOW DAYS!" [sic]

Hmmm. Food for thought, most definitely. Granted, I have not seen the film. What I do know is that Stiller's character in Tropic Thunder, an actor, attempts to play a person with a cognitive disability in order to secure an academy award nomination. Said character is referred to as a "retard" and the expression "Never go full retard" is used in the film. Those are the facts.

Mr. Stiller and his supporters have claimed that if you don't think it's funny, you are not clever enough to get the joke--that he's making fun of people who don't understand disability. High concept comedy, indeed. That cleverness and "free speech" appear to cloak Mr. Stiller in Teflon. Some of us are clever enough, however, to see that what really protects Mr. Stiller is that most people in this country do not care enough about the rights of the disabled to make a fuss about this issue. The rest of us are "too sensitive". Mr. Stiller and others are able to freely ridicule people with developmental disabilities because it is the last publicly acceptable prejudice in our society.

Now let's consider another word that has a tumultuous history in this country--the N word. I won't write or say it. I can barely even think it, but you know the word I mean.

This word was developed by oppressors to keep another group of people down; to keep them in their place. It was born of hate, ignorance and fear. It was (and is) used to insult, to demean, and to assign inferiority.

Can we not say the same things about the R word?

A funny thing happens when an oppressed group begins to take back its power. Members of the group take ownership of the words that were used against them. We have seen it happen with the N word and with "queer". Whether or not black people should use the N word is not for me to debate, as I am white. I only know I will not use it and will make my feelings clear if people use it in my presence.

It will be a happy day if people with disabilities gain the rights and privileges of the non-disabled, if they ever are accepted into mainstream society without fear, ignorance or shame. Perhaps on that day, they can claim the R word for their very own. Until then, do I think people like Mr. Stiller should be banned from using it? No. But I will vote with my wallet and not see his film. And I will hope and pray for the day when a movie that uses the word "retard" won't get made at all--because no one will think it's funny.

One of the Good Ones

Yesterday was Liam's last day at surf camp. I got an ebullient report from his aide, who said he actually rode the board on his knees for awhile. He had behaved all week to earn nail polish--two of the counselors let him paint their nails. I took photos of him and his aide and got her information to keep in touch. She was a large part of why his experience was so awesome the last two years. She even loved him through the rough time he went through last summer.

We had been carpooling with another little boy and Liam tried so hard to engage this kid in conversation. He asked him appropriate questions in the car, but didn't get much of a response. The other boy is very verbal and social, but, like Liam, seems to prefer adult contact. He stayed for awhile to play after camp and Liam was trying to interact with him. He was showing him his toys and telling stories about them. I told him later what a good job he did. It was hard to watch him put himself out there and not get reciprocation. The other kid was doing the best he could, though.

After that long, exciting day, I did something that probably wasn't smart--I dragged Liam to the grocery store with me while Zoe was at soccer practice. I couldn't have been more surprised by his behavior in the store! He stayed next to me, listened, helped me pick out groceries and kept his hands to himself! He carried one of the grocery bags and put it in the car for me. I was so thrilled that I bought him an over-priced, eco-friendly lunchbox. All afternoon he was chatty and sweet, speaking clearly and appropriately. There was little to no perseveration. On the way home from the store I told Bee how good his behavior was. He said, "That is a lot of responsibility."

Yes. It is.

When You Know Better, You Do Better

That's what Oprah says and she is right. Yesterday Liam came home from camp very agitated and anxious. The aide had said he threw a tantrum when she tried to get him on the surfboard. All afternoon, he obsessed about camp for next year: could he take music camp? was he the right age for cooking camp? soccer camp? I kept telling him not to worry about it, it's a year away, let's focus on the present. He followed me into the office and asked me to make a list of camps for him, still very distressed. Finally, in my brain a bell went off.

"Liam," I asked, "Do you like surf camp?" "I like camp," he said clearly and immediately, "but I don't like surfing." "OK," I said, "Tomorrow you don't have to surf. No surfing unless you want to. You can play in the waves or do something else. Is that ok?" "Yes," he said, "But I won't earn Max and Ruby." "You will," I told him, "I will write a note saying you don't have to surf. Only if you want to." From that moment on he was fine for the rest of the evening. This afternoon his aide said he had a much better day, was calm and happpy.

Lesson: listen to what he says, even if it sounds like nonsense. When I ask the right questions, he gives me the answers.

First Day of Camp

I feel compelled to write something positive after the recent upleasantness. Today was Liam's first day of surf camp. This is the same surf camp he did last year that is sponsored by the ASA and it is wonderful. He has been talking about it for a year. He gets one-on-one surfing and other activities on the beach with an aide who is an ABA-trained surf and swim instructor. This year, they even threw in a wetsuit. This is one reason why I love the ASA. They are the only autism-related organization who has helped us in any real way.

We requested the same aide Liam had last year and he did get her. She was so happy to see him. I had to spend 4 hours in the car today and $40 on gas, but it is worth it. (I met another mom from our area and we are going to carpool for the rest of the week.) Liam's aide said he did very well today. He struggled on the surfboard but played in the waves for two hours. I accidently showed up an hour early (why, God, why?) so Liam and I walked along the Mission Beach boardwalk. He was very happy and chatty, asking questions about everything he saw.
This afternoon, he saw me eating one of my Weight Watcher's ice cream bars (I don't tell the kids that I diet, but they know certain foods are "Mama's") and he said, "You are eating your ice cream bar. Eat it. Bite it. It is for you only."

Two Moms at the Pool

I try to avoid angry diatribes, but there are times when nothing else will do.
To the Two Moms at the Pool Discussing Your Gifted Children:

I am sorry to have eavesdropped on your conversation. I mean that. I really wish I had not overheard it, but you were in the lounge chairs next to me and I had no choice. For reasons described below, I decided against publicly chastising you, so here are the things I would have (should have?) said.

1. Re-think the meaning of the word "gifted" and how you use it. I believe all children are a gift to us and each have their own gifts to offer. I'm guessing your meaning of "gifted" is that your child earns high grades and excels at everything he or she does. Your conversation indicated as much. That would describe the majority of the children in this affluent community. It's likely that yours are not significantly smarter than most of their classmates. If your children are, as you claim, gifted, why wouldn't they be? They are white and upper middle class. They get at least three nutritious (possibly organic) meals every day, plus the snacks you tote to all of their activities. They have premium medical care. They are chauffered to violin, tennis, gymnastics, private tutoring, etc. in safe, air-conditioned gas-guzzling vehicles with proper safety restraints. You yourself are college-educated and provide every enrichment that money can buy. You have stayed home with them full-time since they were born. It's kind of hard not to excel in a situation in which . . .

2. . . .being "gifted" is a problem?? Your conversation was a general complaint about how difficult it is to procure an educational program worthy of your gifted child. If that issue is worth wasting breath and brain cells on, then I would suggest you get something resembling a life. That may involve educating yourself about actual issues that present problems for actual humans.

3. Before you make the statement "If only the district spent as much money on our kids as those special needs kids", look around. Make sure you are completely alone or that no one can hear you. Some people might find your statement extremely offensive. You clearly know nothing about having a "special needs" child. You have no clue how much money the district spends on a special needs child. I don't even know that. It isn't relevant to your complaint. Your statement indicates that you believe your child needs as much help as my child does. I don't know whether to laugh or cry about that. I decided not to break all this down for you publicly because my kids were with me and I just didn't have the energy to explain ignorance and self-absorption on that level. Also, I might have come off as crazy. So I'll have to vent in this forum that you'll never see because it's for all those expensive special needs kids who take money away from your poor, suffering gifted kid, whom I'm sure will end up curing cancer or maybe the dreaded autism.

4. Kiss my ass.

Home at Last

We just returned from a week of traveling. I say "traveling" and not "vacation" for a good reason, although there was one hour by the pool where I felt like I was relaxing.

Liam did very well, especially considering the lack of structure and constantly changing environments. Here is a story he wrote about his vacation (with his permission),

All the Dogs
By Liam

I met a dog named Lucky. A white dog. I met a dog named Shaggy. A black dog. I met a dog named Walter. A black and orange and white dog. I met a dog named Lola. A black poodle. I met a dog named George. A bulldog.

Lucky was Chris’s dog. She showed up on his doorstep one day. And the old dog is Shaggy. Lola is Wendy’s parents’ dog. She likes to jump on me. She likes to run really fast and eat grass and drink water. George is a bulldog. She likes to jump up on people too. Walter was having a dog party. He licked my hand. He ran around all the sides of the pool. Gus! Gus runs around the sides of the pool. Gus runs after Walter. Gus likes to give the ball to Walter.

He's My Brother

I don't mention my daughter very much in this blog for a couple of reasons. This is about the experience of being an autism mom; parenting a child who is on the spectrum and all of the joy and tribulations that go along with that. Also, she is easy. She is a smart, healthy, well-behaved, helpful and loving six year-old. She is everything a parent could possibly dream for in a child. She does not create much drama or conflict and who wants to read about easy?

She is, however, the sister of an autistic brother. Her life experience will always be fundamentally different than that of her peers. As her mom, I do everything in my power to make sure she is not shortchanged or deprived of my attention and resources. I have spent more time taking her to playdates and birthday parties, volunteering in her class and at her school than I have done with Liam. I speak honestly to her about her brother; his challenges and difficulties, the best ways to help him. I listen to her frustration while limiting her self-pity. I've told her, "I know it's hard, but sibling relationships are never easy. My brother wasn't autistic, but he stole my money, beat me up, chased my friends away and read my diary. Does that sound fun?" I try very hard to have the most healthy relationship with her that I can in our odd situation, but the truth is that I don't know if I'm doing any of it right. Sometimes I imagine the conversations she will someday have with her therapist.

Two recent events made my heart ache for her:
1. Zoe had a friend over the other day. I was trying to get Liam to practice his handwriting and he was having his usual meltdown that precedes begrudging cooperation. "Liam, please," Zoe pleaded quietly with him "Don't do this in front of Emma."
2. I went to check on her long after bedtime. She was sitting on her bed silent and still. "Mama, " she said when I entered the room, "People never believe me when I tell them Liam's eight. Then I tell them he has autism but they don't understand. I just keep explaining it to them, but they never understand."
I told her that I know how hard it is; that I feel the same way. "But big people understand, " was her response. "Oh, no, Zoe," I said, "Big people don't always understand." I told her that if I was around, she could tell her friends to ask me. I told her there are a lot of kids who have the same issue and maybe she'd like to talk to them some time. Then I told her that if all that fails, she can simply say, "He's my brother and we love him just the way he is. Now do you want to play, or don't you?"

High and Low

Today was one of those days. They don't happen very often lately, but when they do, I start going to the dark place.

Liam had an "observation" at a social skills program I have been trying to get him into for three years. It is funded by Regional Center and has had, at times, up to a one-year waiting list. There are two levels to this program. Level One is for "lower functioning" kids. Liam qualified for this one last year (based on his behavioral difficulties) and after the observation, I decided against sending him. The location was a long drive and, in my opinion, the program would not have benefited him. After all his progress over the last year, I asked to have him re-evaluated. I took him to the assessment last week and was told that yes, he seemed to have the necessary cognitive and verbal skills for this level. He did not comply with the standardized portion of the assessment, which I believe raised the red behavior flag for him.

I dropped him off at the program this afternoon after telling him it was a place for him to learn to make friends. I had already prepped him about what would happen and this is not his first foray into the world of learned social behavior. He was already pissed off because his sister couldn't go with him, but he seemed ok at the drop-off, joining the other kids with no apparent problems.

Forty minutes later, with a handful of items in my arms at Anthropologie, my cell phone rang. I knew without looking at the caller ID that it was the site manager of the program. "What's going on?" I asked. She told me she wasn't sure this was going to work out for Liam; he had become aggressive, grabbing one child's hand and kicking another. He began spitting when asked repeatedly to do a non-preferred activity. I agreed to come get him and hung up.

My knee-jerk reaction was "God damn it! I knew he'd fuck this up. He needs this more than anything, it's almost too late to get it for him, and now he's lost himself his last chance." I was close to tears as I drove over to the school.

I went into the classroom where Liam and the director were alone. The other kids were on the playground. I told Liam to get over to the playground and explained to the director that keeping him inside was actually a reward for him.

She told me they just can't have aggressive behavior. I said, "Are you telling me that in the history of this program, no child has ever kicked or hit another child?" "Not in Level Two," was her answer.

So we're here again. We're at this place AGAIN where people with autism are divided into levels of functioning. Teachers do it, professionals do it and worst of all, parents do it. "My child has autism," a parent will declare at some meeting and quickly follow it with, "High functioning." Thank God. They have to make sure no one imagines their kid wandering aimlessly and friendless around a playground, muttering to himself--like my kid does. When I tell people my son has autism, they often ask, "How um, how does, he . . um..." "How high functioning is he?" I offer, "It depends on the day. Just like my level of functioning."

When I got the full story from the director, who I'll call Mary, it became clear that Liam had done quite well for about 2/3 of the session. He had participated nicely in two group activities. When the activity changed to a guided conversation with three peers, he freaked out, sliding down the chair, kicking the table and eventually becoming aggressive and disruptive. I explained to Mary that we had seen this kind of behavior before from Liam. It was a fight or flight response to what Liam perceived as a threatening situation. I'm still not quite clear on why I had to explain that to an autism expert. I begged and pleaded with Mary, making the case that I had seen these same behaviors disappear with the right supports. His teacher had virtually eliminated them at school. Mary pointed at Liam on the playground, "Look, " she said, "He gravitates towards the adults. When the kids he knows tried to talk to him, he wouldn't respond." "I. Know." I answered, with what I consider great restraint. "That's why I brought him here." I eventually got her to reconsider, although I half believe she said what she needed to to get rid of me.

While I sat there talking to Mary, she was approached by a mom I know slightly and had last seen a year ago, when Liam was at his absolute worst point and I was trying to get him to succeed in a private social skills group, at which I was paying through the nose and doing all the work. "Great," I thought, about to laugh crazily, "She sees me and thinks 'Oh, God. It's that really fucked up mom with the really fucked up kid. I hope they don't let him in.'" It was demeaning to be seen in this situation yet again, literally begging for my kid to be included in a group for kids WITH AUTISM. I pointed out the frustration of this to Mary. I said, "You have to realize how hard it is for me to hear that my kid needs help so much that you can't help him." "I'm just trying to think about what's best for Liam, " she said, "I'm trying to figure out how we can make this work. I'll have to talk to my supervisor and get back to you." I won't be waiting by the phone for that call.

Instead, I called my amazing friend Lisa, who told me what I, on some level, already knew. Liam was set up to fail in this situation. What really steams my ass is that there is one kid in there who is not autistic. I know her family quite well. Her mom fought like hell for her to get the diagnosis early and she received every benefit from the state--including 40 hours per week of ABA. For whatever reason, she is now indistinguishable from her typical peers. Her school district even ended her IEP--she doesn't need it. But she is getting respite care, MediCal and now this social program that my son is about to be turned away from--all funded by taxpayers. I can't even see straight when I think about it.

The way this looks to me is that there is a group for the non-verbal and/or behaviorally challenged kids and one group for the highly verbal, socially appropriate kids, but nothing in between. Yet again, my son slips through the cracks.

What does it mean when a kid with autism is turned away from a program to help kids with autism because he acted autistic?

Up in the Community

Today I took Liam and Zoe to their second drama workshop, with my fresh new eyes from the Autism Summer Conference. This group sounded promising, as it has the word "community" in its title and the director assured me that inclusion is one of their goals.

It started out with people of all ages in one room, presenting monologues they were working on. Liam squirmed in his metal folding chair and babbled to himself quietly. I took him out for a break. When we returned and he noticed yet another person getting up to speak, he cried out, "I don't want to go up there and talk! I don't know what to say!" Everyone laughed, including me. Zoe was exceptional, sitting quietly through every monologue, although I know she was bored to tears.

The second part of the workshop is for the kids to split off from the teens/adults and do some improv work. Liam did ok with that, although he needed some prompting and some physical support from me to be able to sit on the hard floor. Him being able to sit still and quietly is something I'm learning to let go of. I think Martha Leary would say his body needs support--it may not be something I can demand of him. The other kids basically ignored him, except for one bratty little girl in pajamas, who exclaimed, "Ewww, I'm not touching that ball now", after Liam rolled on it and touched his tongue to it when it was his turn to hold it. He went to the mirror (the workspace is a dance studio and he loves the multiple mirrors) and put his arms out to touch his image. "Uh, that was weird, " the pajama brat said, "He just hugged himself." Her mom shushed her and I fought the urge to say, "Yeah? Well, he thinks YOU'RE weird for wearing pajamas in public." (Which was true; he asked me about it.) He participated in the activities, with me prompting and translating.

The third component is a movement workshop with this German woman who is quite talented and experienced. She has an authoritarian, yet gentle approach that these kids are not used to, but is quite effective. I spoke to her about Liam briefly after last week's class and she had asked us not to interfere, but just let him be. She tried to engage him a couple of times in a dance, but he preferred the company of the fire extinguisher in the corner. There is a ballet barre there that he leans on. She paired the kids up (except Liam) and walked them through a simple story told with movement. After watching the kids walk through it a few times, I took Liam outside with me and we talked about the story, which I knew he heard and understood.

The other groups presented their dances and I told the teacher, "Liam would like to try it with me as the princess." She said of course. The hardest part was getting him to touch the fake rose he was supposed to use. He was afraid of getting pricked by thorns. Once we got past that, he did it perfectly! Everyone clapped and we even did it again for the adults. I just had to whisper to him once to get him started. I think everyone was surprised. They hadn't thought he was capable of remembering and following simple directions.

This is the hardest thing about autism--not autism itself but other people's perceptions of it; of Liam. The parents look at me with pity and the kids look at Liam with confusion or disgust. They don't know how smart he is, how funny, how creative and perceptive. "He's my son!" I want to scream at them. "Even if everything you think were true, would it kill you to just accept him?" Of course, if I was not Liam's mom and I saw a kid rolling around on the floor babbling while the other kids sat still and listened. . . I have to admit I wouldn't expect much from that kid. So I don't scream at them. I don't yell. I don't even lecture. I just keep showing up with my son, waiting patiently for the moment he will dazzle them the way he dazzles me.

Labels, labels

One of the topics discussed at the Summer Autism Conference was the debate over labels. Should we use "people first" language and refer to someone as "a person who has autism"? Or should we say "autistic person"? The self-advocates each had their own preferences. Those who use the term "autistic" say that it is like any other descriptive word--blonde, smart, athletic, funny, etc. If we shy away from the term, we are admitting it is negative. Those who prefer the people first language say that they are a person first and that autism is one of many traits that they HAVE--blond hair, athletic skills, a sense of humour, etc.

Everyone agreed that it should be up to the individual to let people know how they would like to be referred to. I have struggled with this issue myself. I used to say "autistic", then switched to "has autism". I made up my mind to let Liam decide. This is how our conversation went.
Me: Liam, would you prefer to be called a person with autism or an autistic person?
Liam: (Looking at me like I'm crazy) Just call me Liam.

The Show

I'm slowly processing the information from the conference as it inserts itself naturally into my life.

Today was the kids' final "show" at the end of a week of music camp. Their group learned singing. Liam had an inclusion aide, who we love and does a really great job meeting his sensory needs and helping him participate when he wants to. Liam and Zoe's group had to sit on a hard floor and wait for about 45 minutes until it was their turn to perform. That kind of situation can be a disaster for Liam. I saw his aide take him out and run around with him outside at one point, which was smart. When the kids got up on stage, Liam's aide sat on a chair to the side. Liam was the only boy. The first two songs were just bad songs (Hannah Montana and High School Musical--God help us) but I know Liam knows the words. He wasn't really singing, but he stood at the back and did some of the dance moves (out of sync). He generally stayed in place while occasionally pulling his shirt over his head.

I noticed he never went in the front to do a solo. I immediately became furious and ready for a fight, thinking the music director put Liam in the back where he wouldn't embarrass the group. Fortunately, I spoke to Liam's aide, who told me the director did try to get Liam to do a solo several times, but he refused.

A year ago, it might have upset me more that he "stuck out like a sore thumb", but not so much today. After everything I've learned, I just hope he was happy up there. I hope he liked the music. I hope he liked being with his little sister. I hope he liked knowing I was there to watch him.

The First Thing You Learned

I feel like I have returned from autism boot camp. Because Lisa and I went through it together, I feel even more bonded to her.

I'm still processing all of the emotions, ideas and opinions. Last night when I got home, the first thing Liam asked me was, "Did you have fun?" I said yes. "Did you learn more about autism?" Yes. "What was the first thing you learned?"

"I learned that I need to listen to you more."

Autism Summer Conference Day Two

More mind-blowing information today. I am mentally exhausted.



Martha Leary's presentation on Rhythm was the most thought-provoking for me today. It underscored that so many of our interactions with Liam are really not helpful (at best). Leary indicated that echolalia and scripted language often do serve functions and that sometimes the caregiver/teacher must do some detective work to figure out what our loved one/student is trying to say. Behaviorists have taught us to completely ignore Liam's echolalia and repetitive speech--that he is doing it to get attention, so we must ignore to extinguish it. If Leary is right--if Liam is attempting to communicate, then we are doing him a disservice. I must do better at discerning what function all of his speech has, not just the words I deem "socially appropriate".

Tonight, after dinner, he was wandering around in the backyard; in Mr. Bee Land, as I call his imaginary travels. I came out to him and he yelled at me to go away. "I need you to go. Go back in the house. You need to leave. I hate you." I tried asking him why to no effect. I offered some possible reasons: "Are you mad at me for going away all day? Did you not like what Daddy and I were talking about? Is it the sound of my voice or my words?" "I just don't like you," was his answer. I've learned not to take this personally. "I don't need you to love me," I tell him pleasantly, "I love you enough for both of us."

More tomorrow. So tired I can't type for shit.

Autism Summer Conference Day One

I am going free form here, because my mind is reeling from today. I learned so much, had many assumptions challenged and myths shattered. I knew within the first twenty minutes that this conference was going to be life changing. It's going to take me a long time to process and absorb the information I heard today, but I wanted to record my first impressions.

The first presenter was Anne Donnellan, who has worked in the field of autism for 40 years. She started the first preschool for kids with autism in North America. Her presentation was based on the fact that we know very little about autism, so we supplement that lack of knowledge with fabrications or assumptions. She mentioned the oft-cited statistic that 80% of people with autism have "mental retardation" and how there is no evidence to support that assertation. I got to meet her at the evening reception and thanked her for her work.

The second presenter was Martha Leary, an SLP, who spoke about sensory and movement difference in people with autism. She connected behaviors to movement differences and referred to her paper, which compared movement disorders in acquired neurological conditions (such as Parkinson's disease) and autism. Symptoms in other neurological conditions are considered "behaviors" in autism. One of the specific behaviors she mentioned was scratching. When kids with autism scratched someone, it was possible they were craving proprioceptive input. When pressure was applied to their fingertips, hands, and wrists, the behavior stopped. When Liam was doing this, I was told by a behaviorist that he was "taking delight in hurting others" and it "scared" her. Maybe she was right, maybe she wasn't, but I know that when I held his hands tightly (to stop him) the behavior ceased.

Session three was Nan Negri and Kate McGinnity, a behaviorist and special ed teacher who do sensory activities that mimic the autistic experience. I know some ability awareness experts who frown on these types of activities, on the basis that they promote pity for the person with the disability, but I honestly found it enlightening and think it would be helpful for Liam's classmates, teachers and peers in the community.

Estee Klar-Wolfond was the final speaker of the day. Her speech was a bit dry in the delivery (she read the entire thing) but very inspirational and controversial. She is a disability rights activist who partners with adults with autism to challenge the "fix what's broken" mentality of the medical and educational systems.

I will probably have trouble sleeping tonight with all of this new information, but when I came home, my little boy greeted me at the door with all kinds of questions. He was happy and excited to tell me about his first day at music camp. I am prouder than ever to be his mom.

Another Kind of Party

Liam was invited to join his mainstream class at their end of the year party at my favorite place, Pump It Up. (In the previous sentence, italics mean sarcasm.)

I offered to drive some kids in my car--two boys from the class who were so sweet with Liam, holding his hand while we walked to my car. They were full of questions about him--how old is his sister? where does he live? where did he go to school before? Finally, the boy in back said, "Um, Liam's mom? How old was Liam. . .when. . . um, when he. . .?
"Do you want to know how old he was when he got autism?" I said.
"Yeah."
"Well, we don't know exactly, but probably since he was a baby and maybe even since he was born. He was different from other babies. Are you wondering how he got it?"
"Yeah."
"We don't really know that either. We just know his brain works a little differently and that even though he's smart, some things--like making friends--are hard for him. That's why you and your friends are such good helpers for him."
"Yeah, we always help him."
The other kid mentioned a family friend with autism and some ways in which he's different. We had quite a nice, mature talk about it, with Liam listening, of course, sucking his thumb and looking out the window.

Once we got into the "play" portion of Pump it Up, I regretted offering to drive. It became clear that Liam was not interested in jumping on the inflatables for two hours. Liam was interested in breaking every rule at Pump it Up, in plain view of the sour-faced teen aged attendants. He strode up the slide steps with no mat, he dove into the ball pit without waiting in line, he went the wrong direction into the obstacle course and stayed in beyond the allotted time frame--all grievous crimes, to be sure. Guess whose job it was to chase him around? If I hadn't brought the other kids, I could have taken him back to school, which I threatened to do anyway. No effect. "Why does this have to be so hard? Why can't you just have fun?" I quietly pleaded with him, "This one time, could you PLEASE do what the other kids are doing? Just bounce in the goddamn filth-ridden germ holes?"

I finally came to the conclusion that he didn't like being there (I'm quite a genius) and I would have to find some sane way to occupy the remainder of time before cake and pizza. Thanks be to God, I had some books in my car. I asked a kind mom to look after him, while I ran out to get them. When I arrived with my stack of books, a group of the girls surrounded us. Liam was happy reading and listening. Some of the girls borrowed books; they were tired of inflatables and ready for pizza and cake, too. The remainder of the afternoon passed without incident, at least nothing that would qualify as an incident in life with Liam.

The scary part about this is that he was invited to a birthday party there this Friday. This one is Rob's turn, because I swear to you I will go straight to hell before I take him back to that place again. Peer interaction, my ass.

Best Party Ever

Saturday was Liam's birthday party/one of the best days of my life. We've had a party for him every year, but this was the first time the guests were his friends. Before, I'd invite his classmates and my friends' kids, who knew who Liam was and weren't about to turn down cake and goodie bags. This year, Liam made the guest list and every kid who came really knows him and likes him.

We invited two of the kids from the general ed class, where he mainstreams in the afternoons. They are both so sweet. The little girl was so excited to give him his present, which apparently they had had a conversation about! Two of his sixth-grade buddies from school showed up. I was shocked that these girls would take two hours out of their busy weekend to come to a little boy's birthday party. Their mothers are obviously doing something right.

One thing that hasn't changed however, is Liam's reaction to the party. He remained in a remote corner of our yard, talking to himself and rarely approaching the guests. I know how excited he was for everyone to get here, but once it happened, he couldn't process it. In fact, that morning, while I was preparing for the party he got kind of squirrelly. He was trying to get a rise out of me by touching things he's not supposed to, asking the same questions forty thousand times, and generally annoying me. Finally, I remembered to make him a schedule for the party. After that, he was fine.

I had to prompt (and by "prompt", I mean "force") him to greet each guest when they arrived and made him stand next to each friend to pose for a picture. I will make him a "friend" photo album. After all the times he has cried, asking why he doesn't have friends, why he doesn't get asked on playdates or sleepovers, this party felt like a small victory. Now when he feels lonely or left out, he will have proof that, even if just for this one day, kids came over to his house because they like him.

My Letter to Liam, Chapter 8

Every year on my kids' birthdays, I write them a letter. Here is this year's:

Liam Bee,
Eight short years ago I became a mama when I met you for the first time. What a wild, wonderful journey we have taken together so far! This year has probably been the most significant in your life.
Last summer, I was at the end of my rope with your destructive and aggressive behavior. I worked hard with you all summer and at the end of it, you were doing fine again. I started to see more glimpses of my Liam, my sweet boy. We had hopes that your new teacher would be good for you, but that was not in God’s plan. School went from bad to worse. I tried everything I knew and I felt you slipping away from me. I made a bold move by placing you in another school, but I now know it was the right choice. Your new teacher bonded with you the first week. Right away, she was telling me how smart you were. Like an angel, she gathered you into her loving classroom and finally made you feel safe and valued at school. After a couple of months of hard work from everyone, especially you, I had my little boy back.
Since then, we have seen miraculous progress with you. You are reading, spelling and doing math. You learn new things every day and, even better, you now love school! Everyone there loves you and you are making friends completely on your own. I took you to a social skills group last month and the facilitator told me, “This is a different child. He could be our typical peer in the group.”
Daddy and I invited your teachers and aides to an appreciation night at the Autism Society. Everyone sat at the table and told stories about you—good stories! They all enjoy your humor, insight and affection.
This year, you are really enamored with dogs. You want one so badly, but we have agreed that you must become more independent first. You are still obsessed with nail polish and have to check every woman’s nails when you first see them. You love watching Max and Ruby and Lady and the Tramp.
This year’s birthday party will be the best ever. You decided who to invite and even invited some of your sixth-grade girlfriends on your own! Everyone is so excited to come celebrate your birthday.
There are no limits on what you can do in life and I will do everything I can to make sure you succeed in being productive and happy. It has become my life’s work to fight for you and I do it gladly. You are my star, my miracle boy, my puzzle. I love you forever and ever.
Love,
Mama

Liam Turns Eight

Today is Liam's eighth birthday. He started it early--around 4 am he got up, wanting to open his presents.

I don't know if other moms do this, but on the days leading up to my kids' birthdays, I relive the time just before they were born--the anticipation, the wonder, the suspense. I remember washing all his little gender-neutral clothes and putting them away, getting his nursery ready, packing my bag for the hospital (foolishly putting in non-maternity clothes for going home). I knew my life was about to change forever, but I had no true concept of what lay ahead. No one does. The moment I saw Liam's face, I recognized him. I knew him from somewhere. It was clear to me that we had unfinished business and eight years later, we are still sorting it all out.

Just The Way You Are

I read about the following piece on Valerie's List yesterday.
http://abcnews.go.com/GMA/OnCall/story?id=5033594&page=1
Is my child sick or is he different? This is something I have struggled with since realizing that Liam had autism. I say "realizing" because with Liam, there was no definitive diagnosis at first. I went from thinking, "Dear God, just don't let him have autism--anything but that" to "this doesn't have to be so bad."

It turns out it's not so bad and that's what the people in the Autistic Self-Advocacy Network are saying. To me, what's bad or difficult about Liam's autism is trying to fit him into a non-autistic world. This world expects you to answer when asked a question. It expects you to connect meaningfully with your peers, play team sports, sit quietly at your desk. This world expects you to keep your pants on in public. In Liam's world, those things are not important and, sometimes, they're not possible.

Last year, after reading Disability is Natural, I cut back on some of Liam's therapies. I started asking myself some hard questions about why I was forcing him into activities he hated and provided negligible benefit to him. Was it to make him into something he was never meant to be? After giving this a lot of thought, I came to the conclusion that any therapy or activity for Liam had to be justified by one or both of two main goals: that he is able to live independently as an adult and that he is happy. Will he ever have perfect penmanship? Probably not, but is perfect penmanship required to live independently or to be happy? Absolutely not. Does he need to read social cues to live independently and be happy? Yes, so we work on that. I just ended eight torturous months of taking Liam to gymnastics because I remembered that he doesn't need gymnastics to live independently and it clearly wasn't making anybody happy.

All this talk about a cure implies that my son is sick and I'm not sure that he is. He does need support for the parts of his autism that make life difficult for him and other people. When we were having such a hard time last year and I couldn't take him anywhere or do anything without a major shitfest I would have said, yes, he's sick. I came very close to dosing him with psychiatric meds originally meant to calm violent schizophrenics. A change in environment and staff completely turned him around. When we focus on a "cure", we may be doing so at the expense of the kind of support that isn't a quick fix, but helps so many kids like Liam feel comfortable in their own skins.

Speaking of cures, what does all the focus on genetics ultimately lead to? In the case of Down syndrome, it has led to selective abortions. It is possible that the future will not include anyone with neurological differences because they are "sick".

About a year ago, Liam and I got into an elevator. He turned to me and said, "Why are we riding the elevator? We are not disabled." He knows he has autism and that it makes some things hard for him, some things easy for him and lots of things are just the same as they are for any kid. He is more like a typical child than different from them. He doesn't know yet that he is considered by our society to be "disabled" and I will hide that from him for as long as I can.

If I could give Liam a pill right now that would instantly and safely take away his autism, would I do it? It's a monster of a question and if you ask me again in six months I might have a different answer. But today I say no. I will keep Liam--my Liam with all of his frustrating eccentricities and beautiful mysteries. Just the way he is.

Contact

Last night we were at a dinner party with some friends from church--three families with kids, one without. I'm sure the child-free couple was overwhelmed. They are quiet and very sweet. The wife lost her mother to cancer a few months ago and I got a chance to speak with her about it. She is still grieving, but spoke so eloquently about taking care of her mother, how their faith helped them and what she's learned from the experience of losing a parent. She and her husband seemed very knowledgable about autism and have progressive attitudes about disability.

As the party was reaching its end, Liam came into the adult dining area. He approached this woman I had been talking to, looked right into her eyes, greeted her and softly stroked her shoulder. He held her hand and asked questions from his usual repetoire. She looked back at him and gave him her full attention without patronizing him. I can't explain exactly what was happening, but I sensed an exchange of empathy between two people, one of whom has a disability which profoundly impairs his communication and social interaction. Medical literature says empathy isn't possible for him, yet there it was--unless I imagined it. I don't think I did. Other adults (all young, cute women) have told me they've had similar interactions with Liam.


If my son didn't have autism:

I would have so much free time.

I wouldn't feel so damaged and guilty.

Life would be easier.



If my son didn't have autism, I wouldn't know what it feels like to witness a small miracle on an ordinary Monday night.

Happy IEP Day!

The IEP meeting is
I've been struggling all afternoon for an apt metaphor or analogy. I've come to the conclusion that until you've been through an IEP meeting for your child, you can't begin to understand the process and what it does to you as a parent. IEP stands for Individualized Education Plan and every student with a documented disabling condition is entitled to one. At least once a year, a team consisting of your child's teachers, therapists and at least one administrator meet with you, the parent.
At its best, the IEP meeting can be a lovefest, a meeting of minds and hearts who all have one common goal--your child's educational success. The teachers and therapists share cute stories about your child, happily reporting on his or her progress. You bring baked goods to the meeting and profusely thank the team members for their roles in your child's success. You all hug and congratulate each other on what a wonderful job you are doing to support your child.
At its worst, the IEP meeting is an emotional bloodbath. Tears are shed, accusations and insults are hurled across a conference table and legal action is threatened. You sit and listen for four hours to a litany of what is wrong with your child, specific details of all of your child's challenges, shortcomings and general offensiveness. By the end of the meeting, you are convinced that there never existed a more fucked-up kid in all of history and no one (in this room full of experts!) knows what to do about him. You have to drink a bottle of chardonnay that evening just to begin to process what you've endured. It will be days if not weeks before you can stop repeating the horrific scenario in your head--followed by delicious, violent fantasies about certain team members. You will neither be able to sleep nor eat normally for quite some time.
Not that I would know personally.
Of course, what I've just described are the two extremes. Most IEP meetings probably fall somewhere in between, but the majority of ours have been one of those two extremes.
I'm really happy to report that our meeting yesterday was the first type--the bunnies and puppies kind of IEP. Of course, we have high expectations for Liam and in order for him to meet those, he needs a lot of support. Some of the additional support we're requesting is currently unresolved. I can't be specific, but he is still not working at grade level in most academic areas.
On the positive side, Liam's team really gets him--they value his sense of humor, intelligence and personality. They shared wonderful stories of his life at school that we know very little about, because he rarely shares it with us.
I have two favorite stories from Liam's teacher. One is that he had come back from his mainstream classroom with a little rubber worm from a craft they were doing. Liam's teacher said, "Liam, I am doing a lesson right now, so you need to put the worm away and pay attention." Liam answered, "I really need a fidget right now." The beginnings of self-advocacy! He has learned that sometimes he needs a fidget to keep his hands from misbehaving and he used his words to explain it.
The second story was that he was carrying around a picture frame he had made me for Mother's Day and was so excited, saying, "My mom is gonna LOVE this frame." That one blows me away, because he never lets on that he cares about pleasing me.
It has taken a lot of hard work and pain to get our son in this good place, but we can never rest. No matter how well he does, I have to keep raising the bar for him. I just thank God that, for the moment, he is surrounded by people who believe in him just as much as I do.

Liam Quote

Today I asked Liam why he doesn't like it when I occasionally show up at his school. He said, "Because you should be at home." Looks like my twenty plus years of feminism have finally paid off.

Neurological TiVO

One not-so-endearing defining characteristic of autism is echolalia, or what I lovingly refer to as the broken record syndrome. (For those of you who never listened to a record, sometimes it would get scratched, causing the needle of the player to get stuck. The same word or phrase would repeat until you removed the needle.) Sometimes, that's what it's like to live with a person with autism.
Echolalia can take various forms. The person can repeat what you just said to them, they can replay parts of a movie, tv show, or real-life conversation, or something they just made up. For Liam, I think it happens for a variety of reasons. In a new or stressful situation, relying on echolalia or scripted language is a comfort to him. He doesn't know what to say, so he goes through his mental files (more about that later) and picks something that he thinks is appropriate. The other night, as he was lying in bed, I overheard him kind of babbling and then say very clearly "You assholes." I found Rob. "Did you hear what Liam just said?"I asked him.
"Yes," he answered, shaking his head in confusion.
"Well, do you know where he got that?"
"No."
"Do you ever say it in the car?"
"No."
"Oh. I do."
"Mystery solved."
I had read accounts from adults with autism who've said their brain is like a DVR. One day I asked Liam, "Can you watch movies in your head?" "Yeah," he said, "I have a button." I probed him more about this and was able to discover that he can't "watch" events from real life, only movies and he has to have seen them more than once. Often when he seems to be "out of it" or disconnected from our world, he is actually watching a movie on his brain TiVO. Repeating phrases from these movies is either compulsive or comforting to him.
Many times, Liam will perseverate on a topic or question. He has a repertoire of favorites. "What's for dinner?" is one. As many times as you can answer, he can keep asking, becoming increasingly agitated with each round. My sister and I used to joke about an autistic Elmo doll. Every time you pull the string, it says, "What's for dinner?"
One solution that's worked really well for us is using lists or pictures. For instance, one of his favorite topics to get stuck on is dogs--his current favorite obsession. He runs through a list of all the dog breeds he knows, asking if he's allergic to each one. I finally, out of sheer desperation, wrote a list of dog breeds with a "yes" or "no" next to each one. Now, when he starts asking me I tell him to get his list. He gets it, looks it over, and he's done. Hearing something is not as effective for him as seeing it.
The positive part of all this is that, like most people on the spectrum, Liam has an amazing memory. He's told me details from years ago that have shocked me in their clarity. The question is: how do we use this skill to help him? For instance, sometimes with Liam, it's better for him to feed him facts to memorize than try to give him the underlying theory. I'm starting to think that's the only way he's going to learn math. He's very good at spelling, because all he does is memorize the words. He's probably visualizing them in his head.
My hope is that more researchers focus on these skills to help people with autism learn and interact more effectively in a non-autistic world.

Zoe quote

"The difference between adult animals and baby animals is that baby animals are cuter."

Good Times

No, not the 70's sitcom starring the delightful Jimmy Walker, although it was AWESOME. We have had some good times of our own up in this piece lately. Liam has had a couple of amazing days.
On Wednesday I took him to a new social skills group run by our district behavioral therapist. She hadn't seen him since November, when we were deep in the shit. "This is a different child," she said to me when the group was over. On the way home I asked Zoe what they had done in the playgroup. "I want to let Liam tell you, " she said. That was unexpected. I had to prompt Liam several times, but he did tell me. He listed everything they had done and then told me all the changes he had noticed at his old school. We were having a normal conversation and I LOVED IT!
He's had good behavior at school and in the van, came home with tons of work he had completed and got 100% on his spelling test today. He's been compliant and happy at home.
These are the times that make everything worth it. On the other hand, these are the times I can't help remembering when he's rolling around on the floor with his pants down in public. I just want to shake him and say, "You aren't fooling me! I know what you can do--now DO IT!"
When these phases come around, I start scanning my recent memory for any changes in Liam's environment, diet or routine. I do the same thing when he's having a rough time and it's always futile. I'm starting to practice letting go of the ridiculous notion that I have control and just enjoy the good times. . .keepin' my head above water. . .and making my way when I can.

Key to the Executive Function

Monday night I attended our North County chapter of ASA's monthly meeting. Dr. Sandy Shaw, director of AIM spoke about the executive function of the brain and how it is impaired in individuals with autism. Basically, executive functioning is the brain's ability to organize, prioritize and make decisions. In people with autism, there is so much "noise" in the brain that the connections that need to be made for this to happen, are often disrupted. I will share here Dr. Shaw's list of the symptoms that result from this executive dysfunction in the autistic brain:

Disorganization

Emotional dysregulation

Forgetfulness

Inattention

Cognitive Rigidity

Initiation or Inhibition Problems

Time Management

Sloppiness

Spaciness

(Notice that the first letters of each symptom spell "deficitss"--kind of a cool mneumonic device.)

Dr. Shaw asked us to raise our hands for each one of these if they applied to our kids. My hand never went down. This list encapsulates all of Liam's challenges academically and socially. It would make sense for me to despair that my son has every deficit on this list, but I didn't. Instead I was relieved to be reminded that my son's disability is at the core of all of his troubling behaviors. That does not mean that I for one second let him off the hook for making bad choices, but that I need to remember that he needs a LOT of help to make the right choices.

One of the hardest parts of parenting our kids with ASD is that we catch these glimpses of total lucidity, connection and competence. When that level of functioning falls for whatever reason, we feel betrayed. We feel that our child is fucking with us because we've seen them do better.

Dr. Shaw reminded me that sometimes Liam can do well, but sometimes he can't. When he can't, I've got to go back to this list and try to figure out exactly what kind of noise in his brain is interrupting his executive function. Is it the hum of a flourescent light in a grocery store? Is it his itchy skin? Is it the fact that his sister got a birthday party invitation the day before and he didn't? Is what I'm asking of him just too complex? Luckily, Liam is verbal enough to be able to help me with this process. Once we figure out what the problem is, we have to find tools to help him. Visuals, like schedules, lists and pictures, work very well for Liam, as they do for most people with autism. Dr. Shaw even mentioned some new ones I hadn't heard of: a decision tree and emotional thermometer. I can't wait to try those!

Something I kept thinking about during this presentation was a discussion I had with two of my friends a couple of months ago over cocktails. We were talking about how our kids' lives are so much more structured now than when we were kids. Every afternoon is filled with appointments, sports and other "enriching" activities. We wondered what had happened to unstructured time--time to sit around being bored. Boredom led to elaborate pretend games, social bonding with siblings and friends, and often to the library. What are we depriving our kids of when we don't leave room for down time? My friend Michelle mentioned a study she heard about--researchers compared some developmental milestones in kids of the same age thirty years ago and today. One of the important skills that was measured at a much lower level today was executive function. They attributed the loss to the lack of unstructured play.

How does autism factor into this? If you leave a kid with ASD to his own devices, he will most likely use the time to stim or play perseveratively--he's not getting the social or creative input that a typical child would. This leads me to wonder: if unstructured play time leads to the development of executive function in typical children, can we teach it to our ASD kids by prompting and engaging them in pretend play? Stanley Greenspan might have an opinion on this.

In the meantime, I will make a renewed attempt to engage Liam in pretend play and emotional bonding for at least a few minutes a day. It's a lot harder than making visual schedules and lists, but it might be more rewarding for both of us.

Angels and Freaks

Yesterday I was chatting with an aquaintance at church. He was asking me about Liam and autism in general; he confessed to knowing very little about the disorder, so I gave him the basic rundown. This gentleman doesn't seem overly outgoing or given to excessive praise, but he said the following to me: "I watch you with Liam and I think you are an angel." I get variations on this theme a lot. People will say, "You are so good with him" or some such accolade. It makes me uncomfortable every time. It's not because I can't take a compliment; I thrive on praise and savor it like stolen candy. I still carry around a letter my mentor wrote to me in grad school 12 years ago. I check my ratings on ratemyprofessors.com way more often than is professionally necessary. I can absolutely take a compliment. I am uncomfortable about this particular compliment because it's undeserved and saying so would make me sound. . . like I can't take a compliment.



Let me try to discern where this praise comes from. I'm going to put myself in the position I was in before I had Liam--before I was "in the life". You see a mother with a disabled child. The child is disruptive, non-compliant and difficult--generally causing a scene. The mother is loving and patient. You think to yourself: how does she do it? I could never do it and ultimately, Thank God I don't have to do it.



Here's what you don't see: the dozens of hours of behavior modification training the mother has gone through, the stacks of books she has read about her child's disability, the hundreds of hours spent in meetings with therapists, doctors, teachers and other professionals. You definitely don't see her lose her shit and scream at her child after a particularly horrific episode, "You wonder why you don't have any friends? It's because you act like a freak, that's why!" You don't see inside the mother's heart in some dark, dark hour when she wonders if there will come a time when she can no longer care for this child in her home. You think these mothers are angels or saints. I thought that too. You think they were chosen because they could handle it. The truth is that sometimes they can't handle it. But that usually happens when you're not looking.



Another mom said to me once, "I watch you with Liam and you're just so patient with him. I know I could never do that!" This insight was particularly stinging. It was clear that she pitied me. She must imagine that parenting Liam is some thankless job I'm stuck with for the rest of my life. She hasn't known the joy, the delight and the miracle that Liam can be. I don't think she'd understand me if I tried to describe those moments. Instead, I answered, "Yes, you could do it. If it was your child, you wouldn't have a choice."

Ego, M.D.

Last night my friend Lisa and I went to what we hoped would be a positive panel discussion on autism. It was titled: "Marvelous Children: What We Know about Autism and What We Wish We Knew." My afternoon had been pretty rotten. When Liam's van driver dropped him off, she approached me with a confrontational stance. He had allegedly removed his shoes (still not sure why this is considered a crime) and his seatbelt. He repeatedly opened the window and hit the driver on the head while she was driving. I told him that even though he had "super day" on his behavior report, he would not earn Max and Ruby due to his tragic choices in the van.

At gymnastics, he removed his pants (because the shoes were already off?) and stood there laughing with his little penis flappin' in the breeze and his ass hanging out. He refused to do the routines by throwing himself on the floor and (still cackling) going limp like a 60s protester. The aide stood by helpless. I had to step in and literally drag him through the routines. My arms are still sore.

So I entered into this discussion panel truly hoping for the good news. Most of the seven panel members were MDs (one TRIPLE BOARD CERTIFIED!!) and very well-known statewide, if not nationally, for their work in autism research and treatment. I did not learn a lot of new information, except that your number of board certifications apparently directly correlates to how much time you are entitled to on the microphone. No one really spoke of any new treatments, with the exception of Stephen Edelson of the Autism Research Institute. The others treated his opinions with open disdain. Wouldn't it be funny if he was the one laughing in ten years?

Dr. Josh Feder provided the only mention of DIR, a therapy which focuses on engaging the child socially in order to facilliate communication and emotional/cognitive development.

The pediatrician on the panel, Dr. Stein, actually quoted the now-disproven statistic that "three-quarters of people with autism are also mentally retarded". We know now that when you test a non-verbal person with a verbal test, it may appear that they don't know the answers.

The discussion wound up with truly depressing predictions about this "autistic baby boom" growing up to find themselves incarcerated or institutionalized if things don't change. Not quite the good news I craved.

Lisa and I foraged out into the cold night air looking for food and drink, while trying to process what we'd seen and heard. The only restaurant nearby that was open, Bombay, had very good Indian food, nice ambience, cold chardonnay and Midnight Pomegranate-scented hand soap in the restroom. That was the best news I had gotten in a long time.

The Birthday Party

Friday started out with Rob noticing that Liam had little red blisters on his legs and feet. "It's infected, " I declared as soon as I saw it, "I'll have to get him antibiotics." Liam has severe, chronic eczema and a couple of times a year, it gets infected with staph bacteria--something we all have on our bodies, but when introduced to open, immuno-compromised skin, can cause a nasty infection. Getting him to the doctor was the easy part. Explaining to him that he couldn't attend the birthday party at Pump it Up later that day was not so easy. I remembered there was an Ulta beauty supply near Pump it Up, so I told Liam that during the play portion of the party, I would take him there to pick out nail polish for me. Then we'd head back to Pump it Up for the pizza and cake. He was not happy about leaving his sister at the party. "I'm so sad," he cried, "I will miss her."
All sadness was forgotten at the beauty supply. I led him straight to the OPI section with strict instructions to "keep hands down". OPI has the best colors and the most clever names. Liam was in heaven. "Look at this one. . .this is bright pink. . .what is this one called?" He probably could have stayed there all day, but we picked a couple of colors and made our way to the car. We were driving quietly for a few moments when he said, "I just love those bottles of nail polish."
In the pizza and cake room at Pump it Up, he stood out even among the group of younger kids. He wandered aimlessly, stimming on the window shades. Again and again, he spread his arms wide and ran his hands across the stiff fabric. Sometimes I forget how different he is and then am sharply reminded by a look or a comment. I noticed one mother staring at him, not unkindly. I could see the wheels turning in her head: what's wrong with him? Could he be one of those autistic kids I've seen on CNN?
Another mother approached me and asked, "Where does your son go to school?" It turned out she was also "in the life" and wanted advice on how to handle her son's transition into the school district. I gave her my phone number before we left.
After the goody bags were dispersed we headed for the car, Liam and Zoe floating on a sugar buzz and me dreaming of a bloody mary. Time has taken some of the sting out of Liam being so set apart at birthday parties, amusement parks, school and just about every other public place. Time has also enabled me to, at the end of the day, feel truly lucky that I have a child who finds beauty and comfort in row upon row of glimmering, over-priced nail polish.