Thursday, December 12, 2013

Marty is doing well. :)

Hello all and Happy Holidays. I haven't posted in a long time because I have been working. Having been a stay-at-home mom for over eight years has me transitioning into the work force at a slower process. It's been a hard adjustment, but I am managing. To give you an update on Marty, well, he is taking on elementary school and so far, so good. His teacher complains of his frequent talking out of turn, but she is very tolerant and compassionate toward his condition. This summer, Marty participated in a genetic study at a prominent autism research facility. The specialist there concluded that Marty had Aspergers. No duh. Any who, I was glad for the confirmation. Marty also had a psycho-educational evaluation with his school and they concurred: highly probable for Aspergers Disorder. Ok, so with all this reassurance, you would think that we [as a family] would have progressed in our mission to get Marty "some help," nope; we are still dependent on the school's supports; And, very grateful for them as Marty gets a para pro, social skills classes with the counselor, and weekly time with the special ed. teacher...not to mention he is in the inclusion class. Marty's school psychologist recommended play therapy, so I am working on getting this started for him. All in all, Marty is doing well: growing and thriving. He has his "bad" mega meltdown days, but mostly, he is compliant and easily soothed. He has learned so much since starting "big boy school" and we have grown closer. He is such a thoughtful and loving little boy, its sometimes hard for me to identify him as being "on the spectrum". This morning he told me that he "felt bad because his brother didn't have a heater like him." Yes, he has his own personal space heater...don't judge me please. [Something about a heating fan calms this kid like nothing else.] So that being said, I believe my boy is learning how to express his feelings and to empathize, something that many experts claim that those with autism lack. All though I am working, I still try to stay abreast with the latest research on autism, though I am convinced that Auties and Aspies are here to stay. There's no cure, but early intervention and thankfully, Marty got a lot of that. I will leave you with a link to an article that I found fascinating. It seems that many of us with children on the spectrum have made studying autism our life's work.
https://medium.com/matter/70c3d64ff221

Saturday, June 22, 2013

Caricature Marty


Mysterious Creatures...the movie

Mysterious Creatures…a must see movie for all of us parents dealing with a high functioning child on the Autism/Aspergers spectrum. It especially touches on the unique conflicts a parent faces having a more aggressive child with Autism. Not all Aspies are easy going or mild mannered, just like not all NT (NeuroTypical) people are easy going or laid back. The problem with aggressive Aspies is that they, unlike NT, may not have the same restraint or self control. In this movie, a thirty something woman with Asperger and OCD terrorizes her parents so much that in order to cope with the pain and guilt of having an out-of-control adult child, they plan to commit suicide. This Aspie is verbally abusive to her poor father, manipulative with her enabling mother, physically and verbally aggressive to strangers. Her psychiatrists mismanaged her treatment leaving her parent’s with little options to help their daughter. The couple decides to “off themselves” as a way to escape; the father succeeds, the mother survives to live a life filled with sadness, guilt, and regret. Obviously, this movie is sad, but in a way I can sympathize with the anguish this couple felt, having little or no resources to help their child: a child that is determined to enforce the rules of her own world as if everyone on earth should follow them.

As I am watching the movie, my little Aspie wakes up from a full night’s rest, yet he is in the same crappy mood that he was in when he went to bed. Last night he had a tantrum because his dad wouldn’t tell him where he got the phrase, “Ain’t nobody got time for that.” He ran around screaming, “Where did you get those words from!” And when we finally answered him, he remained upset. I guess he didn’t approve of “those words” in his world, or perhaps our cheerfulness in saying them offended him. Whatever the case, this boy’s OCD behaviors have become more intense and more stressful for us. Marty’s preoccupation with ‘getting words right’ is draining, so many questions, so much frustration if he just doesn’t get it. And, he wants to know what everything is. He was yelling and screaming this morning because he asked for donuts and refused to eat what was prepared for him until he knew what it was. “What is that called?  I know I don’t like that, ugh!” Then he storms around the room growling. To stifle the meltdown last night, we sedate Marty with melatonin, bathe him; 15 minutes later he is sleeping. Thank you Jesus!

I pray that Marty doesn’t grow up to be like the adult child in “Mysterious Creatures” and I hope that his “early intervention” pays off. I hate that this couple was consumed by their lack of knowledge and inability to cope with the stress of raising a special needs child. Clearly, they lacked social support and expert advice. In my opinion, their child probably had a touch of Bipolar to go along with her Asperger diagnosis…unfortunately, her spastic raging behaviors reminded me of my little guy, but unlike her parents…I know about the resources, and I am fortunate to have a support system and neighbors that care about my little boy. I am active in my kids’ school. This speaks volumes to teachers and administrative staff. They genuinely appreciate the parents that volunteer and are proactive in their child’s education. With a special needs child on an IEP, it pays to be nice to the teachers. They return the favor, trust me.
I can’t help but to feel sad for the couple in the movie, and a little angry that the father seemly died in vein. I am dedicating this blog entry to his memory in hopes that parents of children with Autism, a disability, or a special need learn to seek help when they are mentally, emotionally, and physically drained. I chose to work in the behavioral health field because of my desires to help people deal with the challenges of life. I hate to think of more parents doing what the couple did in Mysterious Creatures. I know it is very hard, sometimes unbearable, to raise a child with special needs but YOU are not ALONE! Help is only a click, a phone call, or an email away!

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.
http://www.behaviorbabe.com/abcsofaba.htm

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
http://www.kuriositas.com/2010/05/q-aspergers-syndrome-boy-interviews-his.html

An insightful website for Neurotypicals married to those on the Spectrum. This link describes how autistic behaviors affect neurotypicals caregivers or spouses over time:
http://theneurotypical.com/impacts_deficits_in_NT_March_28_2011.html

 

Wednesday, April 17, 2013

My baby boy.



He is generous; not surprisingly, he can be kind and thoughtful. He loves his trains and will talk endlessly about narrow gauge engines. He is protective of his older brother, so I dubbed him, The Pit Bull.” When he needs reassurance, I tell him that he will always be, “Mommy’s baby.” He enjoys telling stories and prefers if you do not look him in the eyes.

Monday, March 11, 2013

"Trains are in my world," Autism observed by a mom.

In many ways, I am just like most other children my age. But in one special way, I am different. I have Autism which, basically, means that I think about things and process things quite differently than my friends who don’t have Autism; we call them, The Neurotypicals.

You see, Autism mostly affects the brain. Think of the brain like a big computer. The Autism computer takes in information meant for a Neurotypical computer and sometimes it gets scrambled in ways that it is not intended. Kind of like misplaced puzzle pieces.

The Autism computer has to learn its own way of processing incoming Neurotypical data, and often times the Autism computer gets overloaded or over stimulated, and it crashes. The ‘crash’ can seem to others like a big tantrum.

For example, I misinterpret facial expressions and emotions. I mistake someone crying for being angry. I may think that they are angry at me and become very frustrated. If you express an intense emotion in front of me, please do not take it personal if I walk away or respond inappropriately. The interpretation of this display of emotions may be more difficult for me to understand or it may be harder on my senses.

Loud noises or high pitched sounds might hurt my ears. I might even cover my ears in protest. Having Autism makes me very sensitive to many things. If the light is bright, it might bother my eyes. What might be normal to you may possibly cause me pain or distress. Like, the smell of a savory meal might cause me to gag. And, big waves on the beachfront frighten me. The sound of the waves crashing against the sand sounds so scary and so loud, I just want to run away and hide.

In my world, I like to know what will happen before it occurs. Predictability means a lot to me. I feel safe when I know what is going on ahead of time. This is why I am stubborn when it comes to changes my routine. For instance, If you give me apple juice in the morning before school, I will expect it every day and it will make me very upset when I don’t get that juice.

My mom lets me sit on the floor of our bathroom when I dress in the morning. I like doing this, it makes me feel calm. Sometimes, my mom uses a timer to remind me when my time is up. This has become my ritual.

I love to talk about trains, and I usually won’t notice when you are no longer interested in hearing about trains. I also like to arrange my toy trains in a certain order. Please do not be offended if I don’t ask you to join me when I am playing with my toy trains. I get upset when the trains are not in a specific order; I might yell and blame others for the trains being out of place.

My Autism brain likes familiar patterns. I get used to a certain sequences or chain of events, and I will insist on this pattern. This makes me feel secure. So, if we take a different route to school, please give me an advance warning. 

Speaking of school, sometimes my friends at school are excited to see me. I am happy to see them too, but when they shout my name or run up to me, I feel anxious. If I growl or hiss it is because I don’t know how to express my uncertainty; it is easier for me to act like my pets.

I enjoy humor, and I like to watch the same videos over and over to memorize funny phrases and scripts. I use them in conversations. It amuses me to do so. Saying the same things over and over helps me feel confident. You see, in my world of Autism, my brain is like a computer that gets overloaded when it has to process a lot of data that is unfamiliar to me. I am most assured when I can do things the same way and when I am made aware of transitions in advance.

Autism is a spectrum or a range of different challenges that sometimes cause tension for me in a world that expects me to be “normal”.  But, my normal is flicking my fingers when I am excited or spending hours engaged in my special interest: trains. I like to laugh, and I am not ashamed to laugh at a funny thought in my head or recite a funny phrase to myself.

What many people see as odd behaviors are simply ways that I cope with stimuli that is confusing or stressful. When I am unsure, I get aggravated easily and will lose my cool. I want things my way, and I don’t like to wait. But, I can learn to wait politely or deal with an alternate choice if I am coached, provided cues, and given positive reinforcement.

I learned that if I wait patiently for something, my mom will tell me that I did a very good job waiting. Or if I ask politely for something without prompting, my mom will give me a special treat.

I like positive praise; it helps reassure me, and makes me feel like I am a good person in spite of my differences.

Although I think in a way that is not considered typical, I still want to be loved and accepted. I appreciate acts of tolerance when I am in the midst of a meltdown. Please understand, often times it is something that I cannot prevent. It looks as if my meltdown happened for no apparent reason, but it didn’t. It is usually a build-up of emotions resulting from unresolved stress, confusion, and disappointment. And, like a pressure cooker, I explode. Afterwards, I feel a little better, but I regret making others that witnessed my tantrum feel uncomfortable.  

I like to know that I have supportive friends and people that love me for who I am. I can make positive contributions when others are aware of my limitations.

I can be a loyal friend when you share in my interests or allow me to share my interests with you. 

Autism is not a curse! I like to feel like I am special and well-liked. Give me an opportunity to be my unique self; this is how I flourish.

 

Sunday, February 24, 2013

Almost there!

Don’t give up…you’re almost there! I read this message on a church marquee while driving home from our visit to the petting zoo. Seeing this sign really made my day. The night before I had an emotional meltdown and cried for hours while praying for God to just, “show me a sign,” and lead my path. “I’m so tired.” I couldn’t even muster up a specific request, simply, “God, I need help.” As I sat there recalling all the positive affirmations I once told myself, I began to confess that, “I am strong and I am healed.” Just saying this over and over made me feel so much better: like a blanket of warmth and love washed over me.  In my spirit, I felt an overwhelming sensation to keep hoping and a belief that I can make it through this. Somehow, during my cry fest, Aspie dad overheard me and came into the room, “is it the pain?” he asked. You see, I have been dealing with pain and discomfort from both arthritis and a pesky fibroid, so I’ve been laid-up most of the week. I reply to a puzzled looking Aspie dad, “It’s just everything.” My crying is more intense now. There is silence. I sense that Aspie dad has left the room, so I remove my hands from my swollen eyes to see that he has, in fact, vanished. Much like my little Aspie Marty, Aspie dad could not process my despair and anguish. He hasn’t been programmed to know what to do in the event of an emotional crisis. Yet, I am almost offended; this act temporarily halted my tears. Then I remember that Aspie dad is only doing the best that he knows how to do. And sometimes for him it means doing nothing. I go back to sobbing until I feel relieved. I think to myself, “Maybe I needed that release.”  At any rate, I feel so much better afterward - like I’d been cleansed. I even managed to fall into a deep bizarre dream filled trance for a few hours. I woke up, and the pain subsides long enough for me to fall asleep again; this time uninterrupted by those dreams that seem too strange to even repeat. I arise out of bed at daylight and all is well.

When I drove past the church and read that sign this afternoon, I smiled. “Thanks God! I needed that!” We go to my favorite store, Target, and I stumble upon a new timer for Marty. I am delighted because, number one –it’s on clearance for $4.98 and two- it doesn’t buzz [Marty hates those noisy white kitchen timers cause they “hurt” his ears]. This timer is pink and has a cute little pink piglet perched on top; when it goes off it says, “oink, oink, oink.”  “Perfect,” Marty loves pigs and the timer will help him with transitioning from one activity to the next.  Not to mention, every time I look at the pig timer, I will think, “DON’T GIVE UP NOW; YOU ARE ALMOST THERE!” Today was a good day!
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Saturday, February 23, 2013

Marty on the spectrum

I can finally say with confidence that my son Marty has autism. Tears. Yesterday, Marty and I met with 2 developmental pediatricians, a retired school psychologist, a licensed social worker, and a mom with a child on the spectrum. The lead doctor said that she felt comfortable saying that Marty was on the Autism Spectrum. She even agreed to write a letter stating this, so that he can get further testing with the county’s school board’s designated psychiatrist. The retired school psychologist provided me with helpful tips to manage Marty’s meltdowns. She recommended that I ask for more visits from Marty’s special education community teacher as two 30 minute monthly sessions is probably insufficient in serving the educational needs of a student with autism. The social worker provided me with resources and encouraged me not to beat myself up; she reminded me that Marty is still young and we are ahead of the game. She stated that many of her clients have teenage children that are newly diagnosed with autism. The doctor conferred that Marty has great potential. When I shared Marty’s dad’s background and his experiences with the local autism clinic for adults, the doctor was surprised that Marty’s dad had managed to accomplish so much. “He’s successful.” She asked if I felt comfortable with asking Marty’s dad’s mom to share some of the things she did to successfully raise a child on the autism spectrum. "Hmmm, probably not." When I commented on how I felt that Marty’s dad was not only in denial about Marty’s condition, but he also refused to acknowledge his own Aspie related challenges, the doctor replied, “That’s part of having autism.” I guess I have to remind myself that Aspie dad is not likely to relate to my views of his autistic behaviors; it’s not part of his make-up.

So with the confirmation that Marty is an Aspie or “on the spectrum,” I feel a little bit relieved.  I finally have validation of what I believed about Aspie dad and our Aspie son. Years of research and continuing education, devoting my life to finding resources to help my son has lead to this justification of my work. Yay! Now, I can tell those well meaning friends and family members who declare, “ain’t nothing wrong with that boy, he just needs a spanking,” to kick rocks and go pick up a book on autism before they give me anymore reckless advice on parenting a special needs kid. Smile. Soon I will feel free to post pictures of my beautiful little Aspie and rid myself of the painful obligation to keep Aspie dad’s image autism-free. As I share my life story being married to a man on the spectrum, I try to be sensitive to Aspie dad’s needs for privacy, so I don’t post pictures of my family. But, one day I will. I am proud of my boys. They brought meaning to my life. In spite of the hardship I have endured for the past ten years, I love being my sons’ mommy. I am not resentful toward their dad (anymore). I respect him and value his commitment to his boys. So before I ramble too much, I just want to say that this blog has been a life-saver for me. It allowed me to share my personal feelings, my experiences, and my opinions about all things autism. I appreciate everyone that reads my blog, and I am hopeful to gain more knowledge and do more things in the autism community.
I will close with an account of a recent encounter with Marty after he left me dazed and confused by his rowdy behavior at the mall.**** Exhausted from the experience of Marty “gone wild” on a sugar high, I get in the car and ask that no one speak to me…especially Marty. Of course he ignores my request and commences to ask and say inappropriate things in an attempt to make his impulsive older brother laugh. I yell that I am changing my name to NOTMARTYSMOM. Marty pauses, “so, you are only Max’s mom?” “Yes,” I scream before the guilt and regret sinks in, “why would I say that to my baby” boo hoo hoo; I am such a horrible mom. So, Marty leans forward in his booster seat, “Hey NOTMARTYSMOM can we go to ToysRus?” WTH? Max burst out laughing. I relax and realize that I did not just scar my son for life. “Thank God for the Aspie brain.” Nonetheless, Marty called me NOTMARTYSMOM, followed by tactless laughter, for the rest of the afternoon. It was quite annoying.

Saturday, February 16, 2013

Autism is my universe

Or in the words of my little Marty, "Trains are in my world." I always get a chuckle when Marty makes comments about the select items that are, "in his world," as if everything else is excluded from whatever world he has created for himself. He's only a preschooler and I often forget that because he is so articulate and meticulous. He wants everything perfect. I'm like, "Dude you still wear a diaper at night, chill out." But, like many other kids with his particular restricted interests and repetitive behaviors, he doesn't relate to his typical developing peers. I imagine that he might even think of himself as a small adult. Something that Michael Buckholtz mentioned in his interview with INSPIRE. He said that growing up he actually believed that he was just a little adult. Michael also talks about Autism being his universe. And, he goes into detail about how he managed to mask his autism symptoms growing up. He speaks about how he had to memorize scripts and phrases to use them as practice in order to see which one worked [in social settings]. Marty does this too and so does his dad. I often hear Marty repeat a phrase under his breath...like he's rehearsing it. Sometimes he uses in appropriate settings; though many times he misses the mark and what he 'repeats' can be offensive and used in the wrong context. I guess its a hit or miss kind of thing when connecting to others and relating to peers does not come natural. Any whoo, I appreciate Michael's honesty and willingness to put himself out there. He really makes me feel much better about the outlook of my Marty's future.

Michael's book is Autism is My Universe
http://www.amazon.com/Autism-Is-My-Universe-Disability/dp/1442112786

His recent interview is available at
http://www.blogtalkradio.com/thecoffeeklatch/2013/01/28/michael-buckholtz--autism-is-my-universe

Thursday, February 14, 2013

Pity Party

In the wee hours of the morning, Marty wakes me up to announce that he has, again, peed in the bed. I wash him off, give him dry pajamas and change his wet sheets. I am so upset, fatigued, and highly stressed. I go on a pity filled rant, as Marty tries unsuccessfully to fall back asleep in his lounger. All the emotions of anger and resentment that I’ve felt over the past few weeks seemed to rush over me. See, earlier in the week, the dog took ill and had to be seen by a vet. My poor doggie could barely stand, he refused food and water, he looked emaciated, and, of course, I feared the worse. Since I resigned from my job, I have felt more hopeless than ever. I had been working as a contractor for 2 ½ months and have yet to receive any form of payment. To top that, my oldest son, Max, had been out of school for a whole week due to strep throat. I beat myself up because I was conflicted about whether to take him to see a doctor. He rejected my home remedies, so he ended up suffering for 4 days before I finally made arrangements to self-pay at his pediatricians’ office. Thankfully, the office gave us a $25 discount. I felt guilty for days for delaying my baby’s trip to the doctor. Everyone in the house is getting sick; the bills from my ER visits are filing in everyday: $1200, $500, $400… I hate not having health insurance; I hate the life I’ve stumbled in. I never envisioned poverty and depression in my future; nor being in a miserable marriage. I know that I made a mistake marrying Aspie dad, and it looks like I will spend a lifetime paying for that mistake. Tears.

All these negative self-defeating thoughts came to my mind as I put clean sheets on Marty’s bed. What did I do to deserve this? Is this Karma? Was I a violent criminal in a past life? Why me? I remember being so ambitious and hopeful before I married Aspie dad. I was so “on fire” for God. When did my faith betray me? Was I destined to spend a decade of my life in a desolate marriage to a spouse that will never ever meet my needs for intimacy and security? Where did I go wrong? Is there a reverse button? How can I climb out of this mess? I went to grad school with intentions to land a hirer paying job to support my kids, now I am 90K in debt and struggling to find employment. I used to be independent, self sufficient, a good steward over my finances. In my late twenties, I had good credit and was looking to buy a condo in the city. Now, I am like millions of other Americans who are just one missed pay check from the welfare line.  I am few years from turning forty, in debt, out-of-work, unhappy, and for the first time in my life, feeling as though I am trapped and have no control over my circumstances. It’s a lonely feeling. I am dejected. I used to be optimistic. Now, I feel more physical pain than joy, more disappointment than pleasure, and more sadness than happy. I look at my friends’ lives in envy…an emotion that I am very ashamed of. A feeling that was once shared delight in seeing my friends’ good fortune, wishful in some day experiencing my own family’s success; but, now, I want their lives and I hate myself for that. How did I marry the wrong man and spend 10 years dazed and confused in this episode of the Twilight Zone? I am triggered to remember, as a newlywed, how painful it was to have a spouse that could never seem to apologize for things he did wrong…never console me or assure me that things would be okay. Instead, I got a blank stare or flat affect and a defensive attitude from a man that didn’t seem to know any better.
Years I put up with this, wondering what I did wrong; blaming myself and thinking I wasn’t smart enough or pretty enough. I am angry at myself for not being able to get out of this situation. How did I become totally dependent on a man that didn’t even know how to write or balance a checkbook when I met him? In fact, his mother paid his bills up until he got married [something I found out about after the fact]. I worked too hard to have this level of failure and poor judgment shape my life. I was the girl that started working at 14, saved to buy a car at 16, and had 2 jobs while I was in college. I had creative drive, renter’s insurance, a savings account, life insurance, and 401K when I was 25. I managed my finances well, volunteered, tithed, was conservative, and maintained a content and satisfying social life.  I was supposed to be successful, have a strong and assertive masculine partner, 4 healthy kids, a beautiful home, and a promising future; yet, I got a 10 year long case study with 3 useless degrees and undiagnosed mental illnesses, children with special needs [that I adore], a working class lifestyle, and an unfinished master’s degree with little prospects. Yes, I know I am wallowing in the pity party, perhaps even being ungrateful, but sometimes all that ‘gunk’ – negative thoughts and desperation, need to come out. I know that “this too shall pass,” it has too. I still have a flicker of hope in the form of a vision of me being happy, having the things I want and deserve, the love that I desire, and the quality of life for my children that is worth living for and fighting for. I also guard the power that I do have…to influence others for good or bad. My kids need to see me overcome obstacles, to be fervent in my faith, and consistent in the kindness I show to them and others. I want to do good. I choose to do good. Therefore, I will get through this hazy period and learn from it. Until next time - Good vibes solicited! Prayers appreciated!

Wednesday, January 30, 2013

Mama

Something amazing happened late Monday night, Marty lay still in my bed fast asleep after being given a dose of Children’s Nyquil to treat his cold. Surprisingly, he wasn’t tossing and turning or easily awakened by the slightest noise. Marty was in a deep sleep. It was lovely… to watch my little baby sleep peacefully. I didn’t want to move him from my bed, but I had to move him from the center of the bed in order to fit my own tired body in the tiny communal space. As I gently moved Marty, he said something that he has only said once before, “Mama.”

Yes, he calls me mom, mommy, and sometimes even, “Mother.” [Like I’m some sort of Stepford Wife, cringe] When he addressed me verbally for the first time, it was to call me, “Mom.” It sounded so rehearsed it seemed almost scripted; nonetheless; still, I rejoiced to hear my then 2 year old Marty call me by my title for the first time ever. I don’t think he said the word dad until he was well over 2 ½. So to hear my baby call me, “Mama,” made my little heart sing. Something about that REM sleep and inhibition freed my ‘pedantic’ little boy so that he could say the word that I have longed to hear him say. Incidentally [prepare for my Aspie interesting fact moment], “Mama,” or dada is usually a baby’s first word. And it’s a universal phenomenon that happens in many countries around the world because the baby’s vocalizing the aaahh sound…daah daah, baah baah, maah maah.

Tuesday, January 29, 2013

After Thomas

After Thomas is a movie about a couple dealing with the challenges of having a child with Autism. It is a BBC movie based on a real life story of a british family that discovered useful interventions for their son using their son's fascination with Thomas the train and their dog named Thomas.

Sunday, January 27, 2013

Recently, I started working for an agency that provides mental health services to disadvantaged youth. The work is demanding, stressful, and it provides little compensation for one’s hard work. I noticed that my own moods have become more unpredictable and my carpel tunnel has been flaring up causing me pain and procrastination. Well, little Marty hasn’t taken my newfound career aspirations with the enthusiasm that I would like. In fact, it is really messing with his morning ritual and daily routines. Dealing my little guy lately has been difficult. The stress has made me bitchy at times; I am ready to throw in the towel.
Marty: I don’t know why you’re doing this but you need to stop!
Me: Stop what?
Marty: Yelling at me.
Marty, you win. I will make it my duty to stop and think when I am triggered to yell. In return, can I please get a break on the morning ritual that makes us late, or the Thomas the train obsession that takes over the second floor of the house? Perhaps you can lighten up on the persistent questioning? Or, the insistence that I use formal words like, “Yes.” instead of slang? Yeah?
Marty won’t be changing anytime soon. I’ve grown to love his quirks and differences even when they 'pop up' during the worst possible times. He’s my baby, and I love him and Thomas and whatever else he will someday obsess over. The featured picture is of the track that Marty brought in my room against my will. He's either really stressed out [and the arrangement of the train soothes him in some way], or he thought that I would actually enjoy stepping over a dozen smiling toy trains on my way to the bathroom at 3 a.m.