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.