Saturday, March 28, 2009

Small Miracle #34a

The other evening I asked Rob to get take-out since I had been at work all afternoon. Liam's babysitter had taken him to the park, and they got back after the rest of us had started eating. As he sat down and started on his tacquitos, I said, "Tell Daddy thank you for getting the food." He said, "Thanks, Daddy" and then added, "I'm sorry I was late." My son has NEVER apologized unprompted for anything. It struck me as so funny and sweet that his first apology was for something that (a) wasn't his fault and (b) no one was mad at him for. I actually had to leave the room and cry.

Monday, March 23, 2009

Back to Square One

I haven't posted for awhile for a couple of reasons. One is that things for Liam at school have gotten really bad and I don't like to be negative. His behaviors have gotten progressively worse to the point where they're as bad as they were a year and a half ago when we were at rock bottom. He's lost another year academically. I've had to get very confrontational with the school district and have to be careful what I say about that situation.

On another note, last week I attended a legislative breakfast with a friend. It was interesting, but not what I expected. It's a chance for special interest groups to get together with state legislators and discuss their issues and agendas. I would imagine that these types of gatherings are taking place all over the state at this point. I expected to be seated at a table with at least a couple of policymakers. This was not the case.

The big name for this breakfast was Tony Gwynn. He and his wife have a foundation which raises money to fund programs for underprivileged youth. Tony's wife, Dr. Alicia Gwynn, really impressed us with her presentation. She spoke in very specific terms about the challenges facing people with developmental disabilities in California and what should be done to meet those challenges. No other speaker at this event made such a strong impact. At the end of the breakfast, I rushed to shake her hand, introduce myself and thank her for her commitment.

Another speaker (staff member to a state senator and parent of two children on the autism spectrum) used her time to recount the pain, confusion and isolation she experienced when her daughter was diagnosed and how she fought her way through it. She spoke of autism in very negative terms in front of her daughter, who looked to be about 11 or 12. My friend and I had trouble sitting quietly through this presentation. My dilemma with a speaker like this is that I don't want to judge or criticize another parent of an autistic child. We get enough judgement and criticism from outsiders. I just don't know how much is achieved for our children, however, when we make the issue about what we've gone through and how hard it's been on us as parents. It is more helpful to present possible solutions to the challenges our family members face.

Linda Thompson, from People First, presented a positive, inspiring viewpoint. As a woman who has cerebral palsy, Linda advocated for policies and programs that empower people people with disabilities to live independent, fulfilling lives.

One speaker towards the end (a lobbyist and parent of a child with special needs) did something really ballsy. He referenced all of the legislators who had been named at the beginning of the breakfast and asked how many were still there! Most of them had left--a sobering reminder that a lot of what we have to say will not be heard by those who are in a position to take action for our family members. I still left full of hope after witnessing so many people attending and participating in an event to support people with developmental disabilities in California.

Workshop Debriefing

Back in January I was fortunate enough to attend a two day workshop with an internationally renowned speech therapist in the field of autism, Michelle Garcia Winner.

My first impression was that she is an extremely astute businesswoman. She is constantly traveling to conferences and other speaking engagements around the globe. She has grown her clinical practice to the point where she can travel much of the time. She has also created her own publishing company to print and distribute her many training materials.

Garcia Winner has been working with individuals on the autism spectrum for over twenty years, but her focus has changed. She started out, like many professionals, working with those on the spectrum who are more challenged. Her practice now focuses on children and adults who have an Asperger's diagnosis. She is also working hard to refine the diagnostic categories of autism, as well as create sub-categories and more accurate prognoses--efforts that are greatly appreciated in the autism community.

The first day of the conference was not extremely helpful for me. It focused on teaching social skills to students/clients on the Asperger's portion of the spectrum.

The second day was more helpful to me specifically in regards to Liam, but also emotionally problematic. Garcia Winner went into more detail about her diagnostic categories and prognoses for those categories. If I'm right, Liam falls into her "moderate" or middle category and the most we can expect for him is to live a life of "guided independence". She specifically stated that individuals in this category could never succesfully attain the level of a university education, due to their inability to grasp the concept of inference--the ability to make predictions about events and characters that are not spelled out in the text.

This bothered me on a personal level, as it set limits for my son that I wasn't yet willing to accept. What bothered me as well was her tendency to occasionally poke fun at the clients she treats. It was all good-natured, but my friend Lisa and I agreed that there was something pitying and disparaging in her manner that was neither necessary nor appropriate when she showed video interviews of a pair of twins whom she had treated for ten years. Did these boys have impeccable social skills? No. Did they fit into society's standards of what people "should" act like? No, but they are fairly independent, articulate, self-aware and, most importantly, happy members of society. I would be thrilled if Liam were doing that well in his 20s.
Garcia Winner also, in my opinion, places a huge burden on the shoulders of her clients to change their fundamental natures. She took great pains to describe how grueling and time-intensive her process is and that the gains made are often minimal. In comparing her philosophies to those we learned at the Autism Institute last summer, I had to wonder why all of the responsibility to change falls on those with the disability. Why can't the rest of society learn to accept and embrace those who don't fit the typical paradigm of social behavior? Can the rest of us just get over it if not everyone pretends to be interested in our babies, cats and weekend plans?

One of Garcia Winner's helpful lessons showed how to use movies to teach what she calls "social thinking". She showed a clip from a film and explained how you can use the characters and situations to analyze motivation and make predictions--getting back to the idea of inference. This can be a way of practicing guessing what other people are thinking, since they don't usually tell us directly.

As depressed as I was about Garcia Winner's prognoses for Liam's place on the spectrum, when I showed him a movie that night, I put her suggestions into practice. I was very pleasantly surprised by how well he did. I showed him Enchanted, which I thought was a good film to use, since the characters are so purely crafted for good or evil purposes. He was, for the most part, able to tell me when someone was telling the truth or lying (a very important social skill) and what reason someone might have for lying.

What was even more encouraging: the following week his teacher mentioned to me how impressed she was with his reading comprehension and, specifically, his ability to infer. I was so surprised to hear that that I made sure we were talking about the same thing. I mentioned the workshop and what Garcia Winner had said about people on that part of the spectrum not ever being able to master inference. His teacher said, yes, that's what it was and she had never taught a child on the spectrum who was able to do it.

I mean no disrespect to Ms. Garcia Winner and I'm sure, based on her comments about "well-meaning" (code for "deluded") parents that she would see me as unrealistic, but I choose to see this as yet one more example of how little the experts really know for sure about autism and how very little they know about my son.

Sunday, November 23, 2008

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.

Tuesday, November 18, 2008

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.

Sunday, November 16, 2008

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.

Tuesday, November 11, 2008

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.

Thursday, November 06, 2008

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?