tag:blogger.com,1999:blog-191163792024-02-08T12:12:40.211-08:00Nitzy FritzThe adventures and opinions of a mom who'd rather be shopping than going to IEP meetings. Nitzy Fritz is an expression my dad made up. It means tchochkes, small items that serve no purpose except to gather dust.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.comBlogger47125tag:blogger.com,1999:blog-19116379.post-41938467322709745042009-03-28T21:12:00.000-07:002009-03-28T21:15:40.938-07:00Small Miracle #34aThe 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.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com1tag:blogger.com,1999:blog-19116379.post-15405136805882945832009-03-23T23:26:00.000-07:002009-03-28T21:09:17.663-07:00Back to Square OneI 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.<br /><br /><br />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.<br /><br /><br /><br />The big name for this breakfast was <a href="http://en.wikipedia.org/wiki/Tony_Gwynn">Tony <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Gwynn</span></a>. He and his wife have a <a href="http://www.tonygwynn.com/tag.html">foundation</a> which raises money to fund programs for <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">underprivileged</span> youth. Tony's wife, Dr. Alicia <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Gwynn</span>, 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.<br /><br /><br /><br />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.<br /><br /><br />Linda Thompson, from <a href="http://www.peoplefirstca.org/">People First</a>, 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.<br /><br /><br /><br />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.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com0tag:blogger.com,1999:blog-19116379.post-88833061578647038532009-03-23T20:56:00.000-07:002009-03-24T21:24:40.961-07:00Workshop DebriefingBack in January I was fortunate enough to attend a two day workshop with an internationally renowned speech therapist in the field of autism, <a href="http://socialthinking.com/">Michelle Garcia Winner</a>.<br /><br /><br />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.<br /><br /><br />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.<br /><br /><br />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.<br /><br /><br />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.<br /><br /><br />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, <em>happy</em> members of society. I would be thrilled if Liam were doing that well in his 20s.<br />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 <a href="http://www.sandiego.edu/soles/centers/autism_institute/">Autism Institute </a> 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?<br /><br />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.<br /><br />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 <a href="http://www.imdb.com/title/tt0461770/">Enchanted</a>, 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.<br /><br />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 <em>ever</em> 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.<br /><br />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.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com0tag:blogger.com,1999:blog-19116379.post-52016125047354792552008-11-23T20:20:00.001-08:002008-11-23T20:25:05.114-08:00What'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 <em>knew </em>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.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com1tag:blogger.com,1999:blog-19116379.post-49332888484364435452008-11-18T22:10:00.000-08:002008-11-18T22:49:34.287-08:00Yes, We Can!Am I a community organizer? If so, then I am in good company and proud of it.<br /><br /><br /><br />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.<br /><br /><br />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 <em>worked</em>.<br /><br /><br /><br />We were talking before anyone wanted to listen and we were showing before anyone wanted to see.<br /><br /><br />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.<br /><br /><br /><br />Liam, I did this for you. Maybe you just moved one seat closer to the front of that bus.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com1tag:blogger.com,1999:blog-19116379.post-21698067200301337482008-11-16T15:25:00.000-08:002008-11-17T21:31:04.932-08:00Things Fall ApartIt'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."<br /><br />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%.<br /><br />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.<br /><br />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.<br /><br />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: <a href="http://www.5pointscale.com/">The Incredible Five Point Rating Scale.</a> 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.<br /><br />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.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com0tag:blogger.com,1999:blog-19116379.post-5914944776922434872008-11-11T18:34:00.000-08:002008-11-11T18:59:45.161-08:00Touch of EvilI 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.<br /><br />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.<br />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 <em>crazy</em>. Liam started giggling at her outburst and she snarled, "Look at him laughing--the <em>idiot</em>!" 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.<br /><br />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.<br /><br />Two things:<br />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.<br />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?<br /><br />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.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com2tag:blogger.com,1999:blog-19116379.post-75836594783820759092008-11-11T18:27:00.001-08:002008-11-11T18:34:09.789-08:00The ShowWe 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.<br /><br />I was disappointed that no one noticed Liam's handmade cape and expressed disbelief that it only took me <em>nine hours</em>.<br /><br />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.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com0tag:blogger.com,1999:blog-19116379.post-77302287495288380252008-11-06T10:34:00.000-08:002008-11-06T14:21:25.760-08:00Say Cheeeeeese!<div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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? </div>Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com1tag:blogger.com,1999:blog-19116379.post-33854793400738129392008-11-05T21:24:00.001-08:002008-11-05T21:58:53.817-08:00I Had a DreamI had a dream. . .<br /><br />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.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com0tag:blogger.com,1999:blog-19116379.post-74182930436751757612008-10-28T20:35:00.001-07:002008-10-28T20:38:17.767-07:00My InterviewHere is a link to my recent <a href="http://blog.patriciarobinsonmft.com/social_skills_for_kids/">interview</a> with Patricia Robinson, a therapist who works with individuals on the autism spectrum.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com0tag:blogger.com,1999:blog-19116379.post-17815421735974607462008-10-27T21:21:00.000-07:002008-11-08T19:43:43.618-08:00The biggest event for our family lately had nothing to do with autism.<br />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.<br /><br />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.<br /><br />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."Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com0tag:blogger.com,1999:blog-19116379.post-41971339625127179232008-10-11T23:40:00.001-07:002008-10-12T00:11:12.457-07:00This 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.<br /><br />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.<br /><br />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.<br /><br />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?<br /><br />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.<br /><br />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.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com0tag:blogger.com,1999:blog-19116379.post-62769709567990173662008-09-17T13:31:00.000-07:002008-09-17T13:52:29.249-07:00Drama QueensI 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."<br /><br />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--<em>my son</em>--participated in a dance and a singing activity. I do not have any scientific data, but I can tentatively say <em>this shit is working</em>. To get him to mimic movements and follow along has always been a huge hurdle.<br /><br />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.<br /><br />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 "<span class="blsp-spelling-error" id="SPELLING_ERROR_0">batshit</span>-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."<br /><br />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.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com1tag:blogger.com,1999:blog-19116379.post-7266041250936496282008-09-10T17:44:00.000-07:002008-09-10T17:56:17.915-07:00R Rated HalloweenZoe 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.<br /><br />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, <em>Mama</em>. That is <em>totally</em> not cool." Liam then grabbed the boobs, one in each hand like a pro, gave them a good squeeze and we moved on.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com1tag:blogger.com,1999:blog-19116379.post-60413595263181919252008-09-08T22:39:00.001-07:002008-09-09T14:58:13.798-07:00The Littlest PilotSeveral months ago, I had the opportunity to sign Liam up for a program called <a href="http://challengeair.com/">Challenge Air</a>. 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.<br /><br />Up to two people can accompany the child in the plane, which presented a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">dilemma</span>: 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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com0tag:blogger.com,1999:blog-19116379.post-33475073029477208372008-09-02T13:50:00.000-07:002008-09-02T19:44:48.740-07:00I Hate the BabyLiam'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.<br /><br />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 <em>baby</em> 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.<br /><br />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.<br /><br /><br />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.<br /><br /><br /><br />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."Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com0tag:blogger.com,1999:blog-19116379.post-34670666225528988052008-08-19T09:32:00.001-07:002008-08-19T15:13:30.378-07:00First Day of SchoolYesterday 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.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com1tag:blogger.com,1999:blog-19116379.post-68762909290018468992008-08-13T10:54:00.001-07:002008-08-14T09:41:47.516-07:00The R WordI was going to stay out of <a href="http://www.patriciaebauer.com/2008/08/04/readers-advice/">this particular fracas</a>, as it seemed like the kind of thing that didn't need any more attention paid to it. A lot of the <a href="http://aspergersquare8.blogspot.com/2008/08/boycott-its-just-word.html">blogs I read </a>have weighed in on the issue, which is whether or not to boycott Ben Stiller's new film, <em>Tropic Thunder</em>. (I won't link to it for reasons made obvious later.)<br /><br />Then I read some of the comments on an <a href="http://perezhilton.com/category/ben-stiller/">entertainment gossip site</a>. The majority of comments were supportive of the film. The clearly intelligent, informed and sensitive readers of Perez Hilton offered up such wisdom as "<em>I still want to see it. I love Ben Stiller. <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Im</span> sure its not that bad. Those people need to quit being so <span class="blsp-spelling-error" id="SPELLING_ERROR_1">friggin</span> sensitive.</em> " and "<em><span class="blsp-spelling-error" id="SPELLING_ERROR_2">iM</span> SEEING IT! PEOPLE ARE <span class="blsp-spelling-error" id="SPELLING_ERROR_3">jUST</span> TOO DAMN <span class="blsp-spelling-error" id="SPELLING_ERROR_4">SENSiTiVE</span> NOW DAYS</em>!" [sic]<br /><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_5">Hmmm</span>. Food for thought, most definitely. Granted, I have not seen the film. What I do know is that Stiller's character in <em>Tropic Thunder</em>, 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.<br /><br />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.<br /><br />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.<br /><br />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. <br /><br />Can we not say the same things about the R word?<br /><br />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.<br /><br />It will be a happy day if people with disabilities gain the rights and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">privileges</span> 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.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com0tag:blogger.com,1999:blog-19116379.post-71134625014383009272008-08-08T09:47:00.000-07:002008-08-08T10:07:51.416-07:00One of the Good OnesYesterday was Liam's last day at surf camp. I got an <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">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.</span><br /><span class="blsp-spelling-corrected"></span><br /><span class="blsp-spelling-corrected">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. </span><br /><span class="blsp-spelling-corrected"></span><br /><span class="blsp-spelling-corrected">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." </span><br /><span class="blsp-spelling-corrected"></span><br /><span class="blsp-spelling-corrected">Yes. It is.</span>Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com0tag:blogger.com,1999:blog-19116379.post-47284404252369394402008-08-06T18:06:00.000-07:002008-08-06T18:14:50.478-07:00When You Know Better, You Do BetterThat's what <a href="http://www.oprah.com/index">Oprah</a> 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.<br /><br />"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.<br /><br />Lesson: listen to what he says, even if it sounds like nonsense. When I ask the right questions, he gives me the answers.Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com0tag:blogger.com,1999:blog-19116379.post-35588810061628792502008-08-04T21:45:00.000-07:002008-08-04T22:01:57.770-07:00First Day of CampI 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 <a href="http://www.sandiegoautismsociety.org/">ASA</a> 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.<br /><br />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.<br />This afternoon, he saw me eating one of my <a href="http://www.weightwatchers.com/index.aspx">Weight Watcher's</a> 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."Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com0tag:blogger.com,1999:blog-19116379.post-43382338302797861352008-08-02T15:58:00.000-07:002008-08-02T21:10:08.621-07:00Two Moms at the PoolI try to avoid angry diatribes, but there are times when nothing else will do.<br />To the Two Moms at the Pool Discussing Your Gifted Children:<br /><br />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.<br /><br />1. <em>Re-think the meaning of the word "gifted" and how you use it.</em> 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 . . .<br /><br />2. <em>. . .being "gifted" is a problem?? </em>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.<br /><br />3. <em>Before you make the statement "If only the district spent as much money on our kids as those special needs kids", look around</em>. 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.<br /><br />4. <em>Kiss my ass.</em>Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com1tag:blogger.com,1999:blog-19116379.post-65917389188792576072008-07-31T09:06:00.000-07:002008-08-02T21:16:33.680-07:00Home at LastWe 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.<br /><br />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),<br /><br /><span style="font-family:courier new;">All the Dogs<br />By Liam<br /><br />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.<br /><br />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.</span>Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com0tag:blogger.com,1999:blog-19116379.post-51562829371434861512008-07-14T20:57:00.000-07:002008-07-15T11:20:29.922-07:00He's My BrotherI 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?<br /><br />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 <span class="blsp-spelling-error" id="SPELLING_ERROR_0">playdates</span> 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.<br /><br />Two recent events made my heart ache for her:<br />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."<br />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."<br />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?"Melissa Collins-Porterhttp://www.blogger.com/profile/10459957692849495221noreply@blogger.com2