Wednesday, May 29, 2013

New books about being an individual with Autism and Marty's progress

Marty and I went to the bookstore today, an outing that once amused Marty for hours, now, it seems he is "ready to go" after 30 minutes. Lately, he has become increasingly clingy to me and craves my undivided attention. I am usually able to work and read while Marty plays on the train table or explores the children's books; now, Marty's train play revolves around storylines and when the story ends, he is ready to leave. What is this about? He also had it in his mind that we were going to the toy store where he would play on yet another train table, the same kind, in fact. I don't get it. Any hoo, I wanted to share my latest readings, Raising Cubby and The Autistic Brain, both authored by successful adults with Autism. It is  fascinating to read about how they interpret the world and their intense attention to details and facts. I often encourage Aspie dad to write about his childhood and vivid memories of his late infancy. He can recall events that happened when he was a toddler. I explained to him that most individuals can not do this, and even gave him an illustration of the differences between our own children's recollected tales of their young childhood. Max's memories of when he was a toddler usually consist of events that left an emotional impression...having fun on vacations in Vegas, Orlando, etc. Marty recalls most events that you ask him about. Its as if once he developed language, he was able to, somehow, file these memories in his brain in a highly organized way. For instance, both boys visited the Day out with Thomas the Train when they were 3; however Marty's recollection of his experience is more precise and detailed, Max, on the otherhand, can only relate that he had been there and relies on photographs of the event for verification. This intrigues me. Hopefully, I can persuade Aspie dad to write a book or memoir about his life; it would be a profound look at being a black person with Autism in a period of time when having Autism was liken to having mental retardation and mental issues were unspoken of and taboo in minority communities. Aspie dad struggles with this label of having Autistic traits. He convinced himself that he is as social as the next man even though in the 13 years that I have known him, he has yet to meet a new friend, invite any friends over, or initiate any social interactions with his peers. He is not socially motivated, but assures me that it is only because he is "mature", whatever dude. Well, after the bookstore, Marty and I meet a friend for lunch. Marty surprised me with his request to, "see the menu," and pointing to his selection of seseame chicken instead of chicken nuggets. My little boy is growing up and expanding his taste buds. Tears. After lunch, we headed to the park and Marty surprises me once again. He heads to the playground determined to meet someone and share his new airplane that can go on the wooden railroad track...yes this is how he describes it, and will get offended if you slip up and call it a train. Potato, Patato, whatever. So Marty manages to break the ice amongst a half dozen 5 year olds by saying, "Hey, you wanna see my new airplane." "Sure," a bossy girl remarks as she snatches the plane train and commences to race it up the paved walk-way. Marty is ok with it until he discovers that the plane is now damaged. I convince him to leave the plane behind with me while he plays. He reminds me that it wasn't his fault that the plane got damage, but the kids who were playing too rough with it; thus they are too blame. Marty seems to cooperate with the other children and surprisingly plays all the games they propose. I am so proud of him. Then I hear his deep raspy voice say to the children, "I'm tired of playing hide and seek," as if they would stop playing based on his loss of interest. Marty recovers quickly after his suggestion is dismissed and ignored. He continues to run and hide and appears to be having fun. My little Aspie is doing a good job being the best kid that he can be, in spite of his differences, he can play a mean game of 'hide and seek' like the next kid.

Tuesday, May 28, 2013

Trains, trains, and more trains

Over the weekend, we visited a large train museum. The whole trip was centered on all things trains. The boys got to explore a historic train depot, model train displays; we took a train ride, and even ate in an old diner car. It was a really fun experience. Marty was so happy. He especially liked the model train museum. He cried at the thought of returning home. So, I promised Marty that when we moved into a bigger home I would help him turn one of the bedrooms into his own model train display. He was so excited. I wish I had that kind of passion for something when I was his age. I guess having a “restricted interest” can somehow make life easier. It takes away the confusion and frustration of having too many options. It eases anxieties and soothes the end of a bad day. Marty once told me, “Even when I become a grown-up, I’m still gonna love trains. Just like that, he has already planned his future around ‘his trains.’ I often wonder if the trains are just a phase and sometimes I pray that it is, but I can’t deny the happiness, relief and pure joy that my little boy has when he escapes to his world of trains.

I took this picture to explore how my little man thinks. What made him arrange these random items in this order? I asked him what he was making, “An Island,” incidentally, everything is an “Island,” perhaps a tribute to the ‘Island of Sodor’. I then asked him why he made it, “Because I wanted too. I like it.” So it’s as simple as that; lining up random objects gives him a thrill.

Friday, May 17, 2013

Mind blindness, Vulcans and angry boys

So I finally get a practical impression of this “mind blindness, theory of mind” thing. Yesterday, I returned home from work and decided to finish my dinner in the car while I listen to the radio. Well, no less than five minutes pass before Marty comes walking out onto the driveway. “Busted,” I think. I brace myself for Marty’s arrival. Then I watch as Marty walks in front of the car, around the driver’s side of the car, and over to the side of the house were his dad is mowing the lawn. I hear Marty’s dad say something to Marty. I imagine Marty was either nagging his dad about getting something for him, or begging his dad to come inside to get him juice or something that Marty could probably get on his own. I chuckle and wonder, “how in the hell did he not see this big a$# blue car sitting here.” While I enjoy this humorous moment, Max comes running out, looks over at the car, “Hey mom.” Surprisingly, he seemed happy to see me. I ask Max how was his day; he responds “good” and is off to play with his friends. Marty, on the other hand, is still on the side of the house talking [yelling] to his dad. I hear Marty’s dad tell Marty that he will do ‘whatever it is’ when he finishes mowing the lawn. Reluctant Marty heads back towards my car; walks around the car and back into the house. WTH! It’s like he never even saw the car, or he just didn’t think to look inside the car to see if I was in it. Perhaps it never occurred to him that the car had not been there when he got home from school. I don’t know. Anyway, I slowly finish up my taco salad and head inside. I walk upstairs and see Marty in the room playing Skate 3. “Mommy, you’re here!” He always greets me with such delight, like I hung the moon or something; it makes me feel so special. Cause any other time, Marty is demanding, bothersome, and “so frustrated.” I engage him and he talks about his day.  I’m glad that he didn’t catch me while I was in the car. I’m sure his reaction to my arrival would have been different. I know I would have got an earful of whatever he was giving his dad. Thanks, Mind blindness! Lately, Marty has been having a hard time dealing with his brother’s friends’ rejection. “Nobody wants to play with me,” Marty cries. It makes him so moody, and he is always mad about something. He seems so miserable when he tantrums, yells, and screams. I am exploring whether Marty has Oppositional Defiance Disorder because in the last few months he has been “off the chain” defiant. Is it the anxiety or the low frustration tolerance? I consider ABA’s ABCs – Antecedent, Behavior, and Consequences when I ponder his meltdowns. Most of them are seemingly out of the blue, and I can’t figure out what triggers them. BTW, Here is a neat website that further explains the ABC theory.

Today, I was fortunate enough to sneak away to see the latest installment of Star Trek. I enjoyed it; especially Spock’s character. I think he is a Vulcan Aspie. I see how, like my little Aspie, Spock masks his feelings and is not moved by his emotions leading his friends to believe that he doesn’t care. Spock thinks logically and is bound by rules. He is good at his job and works hard at it, like my Marty, who will spend hours building a complicated train track layout for ‘dear old’ Thomas.  I envision Marty designing an engineering marvel; something innovative and exciting. I know that, in the future, his brilliant mind will take him to great places in life. Moments like these remind me of how fortunate I am to have my two precious boys.

Saturday, May 4, 2013

IEP meeting, office politics, and other ramblings

Yesterday was a great day. I enjoyed the five hours at my new job chatting with colleagues going over cases and actually giving attention to men [and women] who engage in thoughtful stimulating conversation that doesn’t revolve around their own special interest or some idiosyncrasy…pops…I went there. I digress. But, I relish any opportunity to be in the company of men that are not on the spectrum. I miss it. I’ve gotten so trained to respond a certain way, react in a certain way, avoid, or tolerate peculiarity that I forgot how it felt to just enjoy what is spoken, reflect on it, and be still while savoring the chance to think on new ideas. To just nod and smile, or better yet, laugh. Laughter is something I really miss. I always tell myself that my next husband will be a comedian because I have earned inhouse laughter.

I hope these ramblings don’t offend anyone. I mean, I am not trying to step on toes…especially Aspie toes. It’s just that I think the differences between Aspies and NTs can prevent some connections among humans that set off certain emotions that promote growth: growth of inspiration, confidence, collaboration…beliefs and hope. Emotional reciprocity makes me feel good. If I look downcast; I like when someone asks me, “Are you okay?” Or, if someone offers to buy me coffee for waiting on them while they wrap-up an important call.  For example, I like buying special Kuerig coffee pods for my co-workers, it makes them cheerful. I feel like my gifts are appreciated…sadly, I don’t get that at home. After years of feeling unappreciated, resentment and callousness fester on the heart. For me, the absence of positive feedback leads to feelings of loneliness and incompetence. Work [away from home] has become my refuge.
I think that in the future with 1 in 50 children having autism, the world will look very ‘technical’. The way individuals with autism think can sometimes be exclusive, complex, and one-sided.  Can they [individuals with high-functioning Autism] learn to be NT? In my experience, they mimic actions very well, but they may find it hard to adapt these scripts to the varying and complicated situations in life. My soon-to-be-ex and I are just too incompatible. Years before we married, we shared similar interests in history, collecting artifacts, historic costumes, and period films.  But it seems as if I have elevated to a particular level of insightfulness that he has no interest in. His interests remain the same, while mine have changed and or matured over time. When I was nineteen, I started collecting Barbie dolls. It was amusing, at the time. I loved picking out those glamorous fashion dolls dressed in frilly lace and satin mini replica gowns and shoes. When I married my Aspie spouse, he seemed very interested in my collection, so much so, that he completely took it over. It became a way for him to satisfy his idiosyncratic fetish. He never noticed when I stopped buying Barbies. Even when I removed them from their glass display cabinet and put them in storage, he failed to acknowledge that, perhaps, I lost interest in collecting them. He continued to purchase the adult collector versions and would sometimes convince the children to pick one out for me for Christmas. My oldest son once told me that he knew that I didn’t want them [Barbie] but his dad insisted that I would prefer the Barbie over the gemstone earrings that my son enjoyed buying for me…which I love, by the way.

So this example is one of many that often bring up feelings of sadness and discontentment. For a long time, I felt as if I was stuck, my best years and youth were gone. I convinced myself that I would never have an intimate relationship again and that I would be a caregiver for a disabled man all of my life. I know, I was really really depressed. It took me a while to dig myself out of that. I have come a long way; heck, Marty has come a long way. He has great potential! I often tell him that he is going to change the face of Autism. I don’t want him to grow up being ashamed or belittled by this condition.  He will grow up knowing the challenges that he might face because of his neurological differences. Marty’s father was trained to “act normal” and that has failed him. He’d rather try to fit in. He’s faked it so much that he convinced himself that he has fooled everyone. I fear how he will react on the day he wakes up and I have moved on. I wonder how he will care for himself. My neighbor, who happens to be a good friend, joked that Aspie dad will need to go to an assisted living facility because he could never manage the upkeep of a house on his own. I laughed but felt embarrassed for Aspie Dad as he would never think that anyone would have such a negative appraisal of his level of functioning on his own. But, that’s not surprising…he can’t conceive that others would have an opinion of him that differs from his own inflated opinion of himself. Over the years, I have taught and coached Aspie dad on many things. Topics that I assumed all men should know about; stuff that I felt uncomfortable teaching him because it made me view him as mentally challenged and discredited my initial impression of how intelligent he was. I probably won’t ever get credit for all the hard work I put in. Luckily, this tutelage and experience has helped me with Marty.  I prepared myself for his potential autism diagnosis before he was born. It’s like he had PT, ST, OT, and ABA since he was in the womb [the original LRE (least restricted environment]. Lol.
Speaking of LRE, Marty had his second IEP meeting. And he cut-up, almost on cue. You see Marty’s special ed. Instructor, who he has been seeing for 30 minutes twice a month since November 2012, feels that Marty doesn’t show signs of autism [because he is so smart and he doesn’t look autistic], despite the fact that one of the top specialist in the state said that Marty was definitely on the spectrum. Back to the pre-IEP meeting meltdown – I pick Marty up 15 minutes early from pre-k and he is angry for no apparent reason, but I know that he is probably anxious about his meeting at the new school. His teacher said he refused his lunch earlier, which is not normal for him… so he must be a nervous wreck.  We head to the car and Marty begins accusing me of not letting him do something with YouTube. By now, I am confused. This makes him even more furious. By the time we get to the school for the meeting, Marty is inconsolable and still ranting about YouTube. I give him a couple minutes to cool down before I extract him from the car. He starts hurling insults – “I’m stupid, no one’s going to like me,” he hates me. He even kicks me. I grab his hand, and ignore the stares from perplexed teachers. All of a sudden I feel a tug on my arm; Marty is on the ground. He just walked into the back of a car [I am laughing-out-loud as I type]. I try to act calm because Marty doesn’t respond well to my attempts to comfort him when he is hurt. I help him off the ground and he proceeds to blame me for the accident. We get in the school and Marty is yelling, crying, screaming, punching me, and talking loud. His special ed. instuctor is shocked. “I have never seen him act this way.” I guess she didn’t believe me when I said he didn’t do well with transitions. In spite of her dismissive attitude toward my concerns, I sense that she genuinely cares for Marty, thus, I am willing to give her a pass.

So Marty gets extra supports in the classroom to help him with personal responsibility and adaptive skills and that consist of a parapro shadowing him an hour a day and individual time with the special ed. teacher twice a month. “Sounds good to me.” I sign and we are on our way out. The special ed. instructor adores Marty. She proposed that I bring Marty over to her house one day to play with her pre-school aged son who also loves Thomas. “Ok, sounds good.” Marty over hears our conversation and asks her 4 times in 15 minutes where she lives. She gets it. “I am sorry, mom.” She says. Now she understands.
As Marty gets older, I expect him to no longer qualify for the autism diagnostic under the criteria in the DSM5. In fact, many people believe autism can be cured because so many kids diagnosed with autism at a young age are no longer meeting the criteria for the diagnosis. My opinion is that over time, with early intervention, the symptomatic behaviors and features of autism decrease because children develop more coping skills, ways to understand feelings and facial expressions, and more effective means to communicate their needs. Heck, the special gluten free, taste-free diets might do something to benefit the blood and brain chemistry as well. Will those previously diagnosed autism kids be motivated by social rewards like their NT peers? Probably not. I live with an adult Aspie for years, and he not the least bit concerned about pleasing others. Don’t get me wrong, he is very nice and polite. He knows all the rules for proper manners. He might even try to do things he thinks, “make me happy,” to keep me from ruminating about leaving his a$$; but it’s not the same as behaving or acting in a certain way because you know it will benefit and please a person and in doing this it also pleases you. This is why I bring snacks to share with those in my office; I am happy knowing that I did something for somebody else that gives them pleasure. I take pride in contributing to the team. I enjoy the social rewards of working in an office…apparently I am not the only one because my office roommates spend more time socializing than working. They are cheerful and productive, and for the short time I am there, so am I.

For your viewing entertainment: A mom and her son with Aspergers share their story on Story Corps

An insightful website for Neurotypicals married to those on the Spectrum. This link describes how autistic behaviors affect neurotypicals caregivers or spouses over time: