Wednesday, December 26, 2012

Children that commit violent acts

With a heavy heart I watched along with the rest of the world as news media announced the worst mass murder in the history of our county. Twenty innocent little lives stolen by gun violence, it is unimaginable to think of how a person could take the lives of children. The shooter, a suspected Aspie, was a victim of a failed mental health intervention by his mother or whoever else charged with caring for him.  I understand that the shooter’s mother supposedly suffered in silence dealing with him. Reports indicate that she rarely discussed the shooter’s “condition” or his mental health status. She didn’t even tell his childhood babysitter specifics about his condition only stressing that her son was not to be left alone, ever. My question is why this mother would expose her mentally unstable son [whom I suspect was given the diagnosis of Aspergers as a cover for his true antisocial nature] to guns as a means of recreation. She had to think, given his mental challenges; there was a chance that he would use guns inappropriately. 

Okay, so back to my theory that his Aspergers diagnosis was just a front for his true pathology of antisocial or psychopathic behaviors. Many troubled and behaviorally challenged children may get the diagnosis of Aspergers because in the mental health community most Aspergers kids have the common problem of being easily frustrated or quick to anger, lacking empathy, and social awkwardness. Well, guess what? Psychopaths or Antisocial personalities can be socially awkward as well. Not all Antisocial personalities are as charming like Christian Bale’s portrayal of the American Psycho; however, all clinically diagnosable Antisocial personalities do lack empathy. This is how they are able to commit mass murders and serial killings.

Contrary to belief, Aspies do possess the capability for empathy…they just have problems expressing empathy.  And, they may not have the same level of empathy for certain things/situations as an NT is expected to have. For instance, my son Marty had his first progress evaluation for preschool and surprisingly [I am being sarcastic here] the teacher says he has challenges in his social development, specifically as it relates to showing empathy and interacting with his peers and familiar adults. His teacher gave an example of how Marty will ignore a classmate when that classmate’s stacked blocks fall to the ground; yet, he is visibly upset when his blocks fall. And, for some reason Marty still has not bonded with his classmates. He chooses to hyper-focuses on one kid, Jayden, and will insist on doing everything with Jayden. Granted, I understand that Marty has issues relating to other kids; therefore, he really isn’t interested in making more than one friend.  And, I really don’t think the ‘stacked blocks’ scenerio was a valid example of Marty’s issues with empathy. I have seen him be considerate and empathetic with others that HE cares for. Had it been Jayden’s blocks to hit the floor, I am certain that Marty would have reacted with concern. With Aspies, they pick and choose who is allowed in their world; those outside of their world may not matter as much.  Sad, but true. For instance, earlier this week, Marty presented me with a lovely rock loosely shaped like a heart. He says, “This is the Heart Rock, it’s for you, so you can stop crying.” Awe, thanks; I think. Marty hates to see me cry; he gets upset…the angry, I wish you would stop crying because I can’t process that emotion, kind of upset though. Still, giving me the rock to acknowledge my emotional state was a nice touch. I think.
Back to the Connecticut shooting; it took me days to process my grief and confusion. To see the precious little faces of those beautiful victims left me in tears, angry, and wanting to blame someone or something. This tragic event prompted a debate on whether or not Aspies are prone to violent acts. Aspie-rage is now a topic of media conversation. Recently, a blogger disclosed the verbal and physical abuse she faces on a regular basis by her adolescent son [suspected of Aspergers]. She took a stand to show compassion for the shooter's mom. Although, my sympathies for the shooter's mom are limited, I do feel for the blogger. She is probably tortured by the thought of her son someday becoming a violent offender. I think about this as well. Marty is physically aggressive with me too. Just the other day, he pummeled me in the abdomen with his fists because I wouldn’t let him go with his brother to a friend’s house and several times a week Marty attempts to ram me with his head. I am trying to get him to manage his frustration and anger properly as I know ‘the system’ is quick to give black kids an ADHD or Behavioral Disorder diagnosis and put them on the pipeline to Conduct Disorder and prison, further supporting my belief that many black males [some may be non-violent offenders] in the prison system inadvertently get the, more severe, Conduct Disorder diagnosis when they probably should have an Aspergers or high functioning autism diagnosis and its co-occurring partner in crime, Oppositional Defiance Disorder. Likewise, Aspergers diagnosis has become the new black and because it is unethical to diagnose a kid [minor] with a personality disorder…many clinicians may choose to give them the ‘mild Aspergers’ tag. However, it’s a lot of bipolar and undiagnosed schizo-affective kids out here, and a bunch of immature sociopaths that the mental healthcare system can’t deal with. Sadly, many times it is those kids with extreme social detachment, varying degrees of depression, and little or no involvement with their family system that turn to deviance, violence, and crime. And more depressing, are the moms like that blogger, who turn to the healthcare system for help for their child only to discover that their is no real help. Thankfully, it is parents like that blogger that don't give up on their child and ultimately do find the answers they need.

I think, the Connecticut shooter had a serious mental illness that was not properly managed by his family. Perhaps his parents were too private about their son’s mental health. I believe it takes a village to raise a child. Marty knows most of the neighbors on our block, so if he happens to get out of the house [by himself] without my knowledge, he doesn’t get very far without a neighbor asking if his mom knows that he is out. By that time, I am on Marty's heels having heard the alarm on the door chime after Marty has left the house without permission. Most of my neighbors know that Marty is likely Autistic; I am not ashamed of this. I need my neighbors to know how to handle Marty as well as have awareness of his challenges. A couple of weeks ago, Marty was with his brother playing at a friend’s house. Marty decides to play with some of the girls on the block and proceeds to urinate in front of their house and ask them to watch. Well, the girls’ mother, although appalled by Marty’s inappropriate behavior, knows about Marty’s issues. She’s definitely upset about the incident, but she has a sense of compassion for Marty that keeps her from discarding him. Thus, the child is separated from the behaviors. Of course, after that incident, Marty is reprimanded by the neighbors, and then me; the fact that he is held accountable for his actions by someone other than me is a blessing that will further help Marty learn how to relate to others.
Even though Marty may not be wired to be ‘social’ like his NT peers; his experiences and exposure to his community has made his more conscious of what ‘society’ expects from him. Lesson learned – if you pee in front of the neighbor’s yard, you will be dealt with…more than once.  I think many kids become desensitized by their parent’s chastisement, but when that scolding comes from another adult in authority it adds a certain ‘shock value’ that leaves a lasting impression. Anyway, the point I am trying to make is this: kids that go on shooting rampages with the intent to murder and maim people probably do not have the social support, family system, and sense of attachment needed to give them pause, restraint, and the sympathy they require to prevent such acts. These kids definitely have serious mental illnesses [plural] that are either undiagnosed or improperly untreated.

It is important to remember that Aspergers is considered a developmental disorder not a mental illness. If the Connecticut shooter had a legitimate diagnosis of Aspergers, I guarantee that he had a co-occurring mental illness diagnosis as well and that he showed signs of mental distress and/or psychosis leading up to the shooting. May those 20 precious little people and the teachers that perished trying to protect them rest in peace.

 

Wednesday, December 12, 2012

Pondering aspie aggression and anger

So for the past few days, I’ve been reflecting on something that Aspie Dad said when I was talking to him about how Marty has this idea that, “No one tells him what to do,” yes, he actually says this to people. I tell Aspie Dad about the occasions were Marty gets visibly upset when he is given a command. There has been many occasions were Marty will attempt to avoid being given a direction [hiding when it is time for a bath] or deliberately doing the opposite of what he was told to do, like walking up the handicap ramp and not the steps. Marty can become very aggressive, when he is being told to do something while he is engaged in one of his special interests. I share with Aspie Dad that Marty reminds me of him. Aspie Dad often gets defensive when I approach him to merely discuss something like changing the litter box more frequently or remembering to close his bedroom window when it rains. If I come to him with a question related to something he has done, all the armor comes out; and I can sense that my point, my complaint, whatever I have to say is not getting through to him. Aspie Dad comments that he  is defensive because he feels as though he is being attacked. Hmmm, interesting. So in thinking about my Marty’s aggression related to directives that he does not want to participate in, does he feel like he is being attacked in those moments? Or does he really believe that no one should tell him what to do. He is frequently disciplined by our neighbor who has a short fuse with Marty’s bullying. For instance, one evening, Marty was told not to ride his scooter in the street. He complied by the rules on his first several trips down the sidewalk, but as soon as he noticed we were not paying attention [or so he thought] he started down the street full speed on the scooter. My neighbor yells for Marty to stop and waves for him to, “come here.” She confronts Marty, who appears angry and mumbling under his breath. Now, if this had been Max, he would have been ashamed [of being caught doing something he was told not to do] and holding back tears fearful of his punishment. But, this is Marty, he is not backing down. My neighbor explains to Marty that he had been told not to ride his scooter in the street. She confiscates the scooter and demands that Marty go play with something else. A stare-off ensues. Marty is puffed up and puckering his lips; my neighbor stares back with an equally angry face. I want to laugh, but I try to keep my composure. After ten minutes, Marty retreats to the yard to find another toy to play with. Victory is my neighbor's.

My observation of Marty, and sometimes his father, is that when they feel attacked or threatened they immediately go into defense mode or sometimes flight. They don’t take the time to consider if the threat is real, what is being said or done to them, or more importantly, how they can respond differently. Lately, I’ve tried to diffuse Marty’s anger before it turns into rage. It has been hard work. He can go from 0 to 100 in mere moments. Usually I am able to talk him down by giving him some alternative behaviors to choose from. For example, when Marty comes running out of his room demanding juice, ice cream, chips, or whatever, and I am busy, I calmly tell him that he needs to wait until I complete my task. I give him a time frame and suggest that he go back to playing and I will come get him when it is time for his juice. Or, he can wait patiently until I finish what I am doing. Marty usually chooses to wait in the room. When I finish, he will remind me of how he did a good job waiting. I tell him that I am very proud and reward his patience. This exercise only works for certain events though; my biggest challenge is getting Marty to comply with bath-time without getting upset.

Because of Marty’s quick temper, I feel like I am walking on eggshells around him. What is going to set him off this time? But, learning to recognize his “triggers” helps me control Marty’s level of aggression if not prevent it. Simple explanations, clear directions, appropriate rewards, and schedules help Marty cope and manage his world…yes, he refers to his life as, “his world.” I also learned to keep a handle on my emotions. Emotions [and some facial expressions] confuse Marty. He caught me crying one day, and screamed at me before he burst into tears and got mad. I had to fib and say that I was pretending to cry. This answer was just fine for Marty. Now, if he sees the least bit of perspiration on my face, he asks me if I am pretending to cry again. Apparently, this annoys him, he shouts at me, “Grown-ups aren’t supposed to cry!” Happy faces are suitable, unless of course they accompany spontaneous laughter in response to a clever remark by Marty that he feels should not be funny…but that’s another story. “Stop laughing at me.”
On my latest DVR viewing of the ever therapeutic Big Bang Theory, Leonard makes a snide comment about Sheldon’s lack of playing fair.
Leonard -Do you understand why people don’t want to play with you? Sheldon –No, although that’s a question that I’ve been pondering since preschool.

 

Monday, December 10, 2012

Re-visiting the seperation and divorce conversation

So yesterday I had a long discussion with Aspie Dad about filing for legal separation. He seemed hesitant to discuss these matters as I assume he’d rather pretend that everything is fine so that we can continue to co-exist like college roommates. He started out very defensive as he expressed his interest in having joint custody. When I probed him for the reasons why he needed joint custody he explained that he wouldn’t have to pay child support if he had joint custody and besides, “he’s a good dad and he hasn’t done anything wrong.” Here we go again. I explain to Aspie Dad that my desire is to have full and or primary custody of the boys seeing as though I am their main caregiver, they are very attached to me  and since their birth, I have made most of the major decisions related to their well being. This was something Aspie Dad could not dispute. He mentioned that he didn’t quite understand and should probably get a lawyer. “Fine,” I say, but advise him that if he contests my wishes for primary custody, there would be a custody battle and it probably won’t be the best thing for our boys. In Aspie Dad’s mind, he sees the boys staying with him for one week, then with me for one week, and this is how it would be until they are adults, I guess. Immediately, I object to this arrangement. Wouldn’t it be easier to just pick the boys up on the weekends and during the week day [when they have a sporting event], than to disrupt their living arrangements by shifting them back and forth between two different houses. I point out that Aspie Dad’s living situation would probably not be on the same quality as mine considering how he keeps his car, his room [my bad, “the room that he sleeps in.”] and the fact that I have done most of the home maintenance, decorating, and repairs in our current home. Aspie Dad argues that he keeps, “that [I mean his] room” in disarray as a silent protest. WTH! I guess his reference to the room as, “The room that I sleep in.” is part of the protest as well. I reminded him that his children have seen his disorganized junkie room and this disarray reflects badly on him. Silence. Back to the ‘separation’ thing; after Aspie Dad admits that the boys would probably be better suited with me as the primary guardian, he asks if we would have separate bank accounts. Yes! Then he wants to know what is going to become of our shared credit card debt. I reply that he probably needs to get an attorney to explain these concerns for him. He is under the impression that I want to share his check, and make him pay on my 2 credit cards once I divorce him. I guess I have to remind him that these are the credit cards that were once paid off, but he and I both had to start using to purchase gas and groceries when he was fired [or as he puts it, laid off] from his job. Aspie Dad comments that if he isn’t living in the house than his name shouldn’t be on the mortgage. Sorry buddy, that ain’t my problem. I don’t want the house, and would actually rather move out than stay in the house that he has neglected to take care of over the years. At first he wanted to live in the house, but now he feels that the boys should remain with me in the house. Thanks for coming to your senses, but at this point I think I would be happier in a 2 bedroom apartment…this house is too much work for a working-woman with special needs kids. I need a home that has had proper maintenance and does not have leaks, cracks, worn-out carpeting, out dated fixtures, a faulty heating system, fractured and unrepaired window and door frames, and a front lawn that turns into a small swimming pool when it rains. Most importantly, I’d like the freedom to live without inhaling the pungent odors of blow-off from the nearby roofing manufacturer on a regular basis. You see, I never intended on living in what I thought was a “starter home” for ten years. I estimate that after years of neglect it would take about $10,000 to fix up this house. So, we move on to Aspie Dad’s favorite topic of how I never loved him to begin with. It’s hard for him to comprehend how I could have loved him years ago, but now I don’t. He didn’t do, “Anything wrong!” I explain to him that he may not have done, “Anything wrong!” but I have grown and evolved in ways that he has not, and this makes us incompatible. “We both deserve to have companions that can meet our needs.” I explain that there is someone out there in the world that he has more in common with. I interject that I still long for more children; I deserve to have an opportunity to find a suitable likeminded partner to share my dreams with. Aspie Dad appears shaken. He asks if he can call his mom because this is too much to take in, he’s never been divorced before, and he is confused. He remarks that he feels like he might vomit. I advise him to call his mom, but try to de-stress first. We move on to discuss Marty and how challenging it is to parent him. Aspie Dad brought up an incident where he spanked Marty in public for throwing his golf club. He said that he felt that Marty learned his lesson from having been spanked. I share with Aspie Dad how Marty is often aggressive, unruly, and defiant with me, his teachers, my mom, my friends, and even strangers, and I fear that without intervention this behavior will become worse as Marty gets older. I ask Aspie Dad if he is ready to admit that Marty has some ‘issues’ that have nothing to do with how I parent. I ask him what he would do if Marty was officially diagnosed with Autism. He says that he would be sad because no parent wants something to be wrong with their child. I reply, “How would you feel personally?” For some reason he is unable to express and own his personal feelings, but in my heart I believe that Aspie Dad would be ashamed of having a child diagnosed with Autism because it would expose his own shortcomings. I share with Aspie Dad my feelings and worries for the children if they don’t get the kind of help that they need to cope with their respective challenges, and also comment on my newfound love for The Big Bang Theory. I explain how the main character of the show most likely has Aspergers, but he is so successful in his career and fulfilled with his life that he is happy and content with being different. In fact, Sheldon [the protagonist of The Big Bang Theory] thinks that he is somehow intellectually superior to everyone else. I share with Aspie Dad how this show gives me hope that Marty can have loyal friends, a purposeful career, and a happy life in spite of his differences. I offer to play one of the DVR’d episodes while Aspie Dad gets his bearings. Marty happens to walk by while the show is on and says to his dad, “Hey dad, you’ve got to see this part; It is so funny.” Chuckle, chuckle.  I am shocked to learn that Marty has actually been watching “Big Bang,” I thought that he and his brother were busily playing while I watched the show. I’d have the show on as I cooked or folded laundry while they played DSI, wrestled, or just ran around the room. So we all sit down to watch as the Jewish character, Wolowitz, inadvertently pours milk down his pants without knowing that his ‘magic show’ milk pitcher had been switched out with a real pitcher of milk. Marty laughs at the punch-line and commences to push his toy car along the edge of the couch. For a brief moment, I allow myself to envision Max and Marty home from college sitting on the couch in our family room watching re-runs of The Big Bang Theory laughing hysterically at the punch-line. In my fleeting vision of the future, life is good. And in my spirit, I know that everything is going to be alright. Introducing The Great Howdini

Thursday, December 6, 2012

Marty's keen sense of smell

The other day my neighbor and good friend called me over to help her identify the origin of a suspicious smoky smell in her home. With the boys in tow, we entered my friend’s home welcomed by the smell of burning plastic. Marty is usually very sensitive to odors but surprisingly he was more interested in going for the peppermint candy jar instead of explaining why the before mentioned odor smelled badly. Recently, Marty has taken an interest in complaining about various odors and smells in our home. “This pillow doesn't smell good.” “Whatever you are cooking smells like something kids should not eat.” And, my favorite, “This poop smell must be from the cat because dogs poop outdoors.” Thanks for that fascinating fact, Marty. Any who, Marty’s hound doggish sense of smell knows no bounds. As a form of entertainment and payback for being called stupid for the third time that day, I challenged Marty to identify the source of the mysterious smoky odor. Keep in mind this is a four year old kid with suspected Aspergers, so it is not uncommon for these kids to have an acute sense of smell [or sensitivity to certain smells]. Therefore, my experiment is validated and not child abuse. LOL. I ask Marty to tell me where that strange smell is coming from. Marty is eager to please. He immediately walks toward the refrigerator. “It’s coming from here.” “Are you sure?” I say. Marty – “Yes, what is in here?” My response, “Food.” Marty stands in front of the refrigerator perplexed. I assure him that everything is okay and we all go outside to await the fire truck. Meanwhile, Max is delighted that he has an opportunity to stay out late and practice popping wheelies on his scooter. "Is there a fire or something, why is the fire truck here?" yells Max, Where has he been for the pass thirty minutes, I wonder, must be the ADD. Once we are outside, Marty slips off to solitude in his room and playing with his trains. My neighbor remarks on how Marty is, “through with us.” Incidentally, she is one of Marty’s favorite persons – she doesn’t back down to Marty’s attempt to control and dominate the situation, and surprisingly they have similar personalities…by personality, I mean that they are both, meanies. LOL, [I think]. As we all await the firemen’s assessment of the suspicious smell, we notice the firemen’s smoke detector device thingy “going off” as he approaches the refrigerator.  The fireman concludes that the burning smell is coming from the refrigerator. Apparently, the compressor is out.  Well, Marty was right after all. I jokingly say that it is time to get the business cards printed cause Marty is straight-up gifted…”The smell whisperer.”  My neighbor friend is amazed. Marty is so smart and witty, sometimes I forget he is still a baby – a precocious little four year old with a deep voice and an affection for big words.

Wednesday, November 28, 2012

My confrontation with Aspie Dad

Yesterday as I am in the bathroom confronting my oldest child, Max, on his lack of ‘cleaning up after himself’ skills, I notice that he has a hard nodule on the back of his neck. “Is this a lymph node?” I think to myself. After a quick neck rub down, I conclude that it might be swollen lymph node; yet I need to know the cause. So I am fast and furiously searching the net for the symptoms, “hard nodule on back of neck”. I get everything from a pulled neck muscle to lymphoma. Why did I have to read about that last one? Now, I am upset, crying, angry, cursing…why me God? I managed to calm myself down and settle with the idea that it is probably a swollen lymph node, and my son is actively fighting off something. Besides, he said that his throat did hurt a little. I figure, it still needs to be checked out even if we are currently in the land of no insurance. So, I have Max tell his father to take him to the doctor; I am tired of being the sole manager of my kids’ healthcare. It was much easier when all I had to worry about was whether or not I had the $25 co pay for an office visit. Now, I have to make sure we have funds on any available credit card just in case partial payment at the ER is required up front.  I think it’s time for Aspie Dad to get a taste of this. So, after Max relays the message that he needs to see a doctor, Aspie Dad comes to me to verify. In the meantime, I discover Max scratching what appears to be eczema or some other skin condition that recently appeared on his leg. I apply ointment to the "rash" and warn Max not to scratch it again because it was already inflamed and could get infected.  “This too needs to be addressed by the doctor, make sure you tell your dad.” Max said that he already showed his dad, and his dad said that it was just a rash. I explain to Aspie Dad, that Max skin ailment was not a ‘normal rash’. It needed to be checked out by a doctor. Aspie Dad isn’t convinced. Later that night, I hear Aspie Dad talking with his mom, making light of the fact that his child needs to see a doctor. He describes Max’s symptoms; I hear him say, “It’s not that serious, he doesn’t need to go to the ER.” Then he implies that I am over reacting; and he’s probably gonna get a $600 bill for the doctor to say that nothing is wrong with Max. Wow, what a way to minimize the importance of your first-born’s health.  His mom is probably just as concerned as I am, so she encourages Aspie Dad to take Max to the doctor as soon as possible; she also tells him to call his cousin, the physician.

I overhear him talking with his cousin. This time he downplays the symptoms and theorizes that it’s probably just a pulled tendon in his neck and the ‘rash’ was probably from Max playing golf in the cold the other day.  His cousin must have told him to take Max to the doctor because Aspie Dad replies that he will just take Max to his regular physician tomorrow. Before he ends the conversation he tells his cousin that he and I are not exactly on speaking terms, and I was supposed to be leaving 4 years ago, but probably won’t leave until Marty is 7. And he doesn’t know what my problem is because he didn’t do anything wrong.  Perhaps his cousin asked what was my problem [with Aspie Dad], or whatever because Aspie Dad replies, “Like I told my dad, she’s just a Crazy Bitch.” Well, it took all the faith and tolerance that I could summon up to keep me from calling that man out of his name.  I was indignant; how dare he belittle my intelligence, make my concerns about my child seem unwarranted , and then call me a crazy bitch all because I chose not to give him the time of day [for good reason, I might add]. When Aspie Dad gets off the phone with his cousin, I go off. I explain to him that I was not the ‘crazy one’ and I didn’t have a psychologist tell me that I had a serious mental problem.  “That’s what they [psychologist] are paid to say,” Aspie Dad says. I respond, “So nine years in school learning to be an expert in mental health matters means nothing when it comes to figuring out what’s going on with you.” OK, so we are playing the denial (I mean delusional) card again.

At this point, I am just feed up. Here I am trying to have compassion for a man with serious cognitive differences and major trouble understanding deep/complex topics, and he could care less about how I feel. He doesn’t ever want to know how I feel or put him-self in my shoes. Besides, in his mind he did everything right. I am the one that never loved him to begin with; therefore everything is my fault. I rejected him, tried to give him a ‘label’, and now I am confronting him on not providing health insurance for his kids. Who the hell do I think I am? Nobody has ever told him that he had mental issues [cause the psychologist] doesn’t matter. Aspie Dad goes on his rant about how if I were a better disciplinarian that Marty wouldn’t have his problems…I am just a lousy permissive parent. At that moment, I realized that I had allowed myself to suffer this abuse for years believing that this man, “didn’t know any better, or he didn’t understand.” I remained in an emotionally and mentally unstable relationship under the pretense that Aspie Dad would do better if he was capable of doing better. I felt sorry for this man, when I should have been feeling sorry for myself. Even if he had no idea how his words and poor treatment of me hurt, his actions still fostered pain in my life and deeply affected my personal well being and self esteem.  At that moment, to hear him describe me as a “crazy bitch” gave me insight on the depth of his cognitive issues and his minimum ability to empathize with me. He would much rather focus on his needs to have his ego stroked then consider my realistic fears for my son’s health or understand my earnest need for sympathy.

That night, I asked Aspie Dad if he would just leave the house to me and the boys [and our beloved animals] and move out. I have a job now; I can make it on my own. Aspie Dad replies, “No, I am not the one that asked for the divorce.” WTH! So, now it’s more important for him to have the 3 bedroom house to himself because “he didn’t do anything wrong” then to help his children have more stability and remain in the house they grew up in during the divorce process.  Aspie Dad feels that he should not have to leave the house if he did not ask for a divorce…he wants to remain married in spite of my unhappiness. He thinks that I am just an unhappy person. Fine, I will leave. Well, Aspie Dad doesn’t want us to leave. I stress that, at this point, this situation is not healthy, and it is best for the boys if we separate. So, I agree to move out. Aspie Dad appears shaken. I really don’t give a rat’s a@#. I am still thinking about how I sacrificed years of my life accommodating a man that could not possibly ever love me the way I want and deserve to be love.  I tried to be his friend, help him realize his true self, and all I get is a “Crazy Bitch” title. Then to think that he has been telling his family members this shi#. The same family members that he rarely takes interest in unless it is to converse about one of his pursuits: football statistics, history, or golf. The same family members that receive greeting cards from me and my boys on their respective birthdays and holidays when Aspie Dad could care less if he acknowledges anyone’s birthday.  Heck, Aspie Dad doesn’t even think to call or send a card to his own nieces and nephews in exchange for their faithful birthday cards to him.  Yet, this is also the Aspie Dad that thinks it is impossible for him to have Aspergers because, “he has friends.” Friends that have yet to visit our home in the 10 years we have been here, friends that my children have never met, and friends that never invite him over their homes or anywhere to just hang out. Or perhaps he means his pseudo facebook friends and second-life avatar buddies. Right, he’s a social-butterfly.  I guess his mom created a social-monster.  I admit it was very hard for me to have compassion for Aspie Dad last night. Years of putting up with his non-sense has left me bitter, resentful -  but I began to think about how difficult and confusing it must be to have cognitive impairments that keep him from relating and understanding simple human needs of acceptance, reassurance, appreciation, and love.  To think that his idea of ‘love and marriage’ has nothing to do with compatibility, affection,  growth, and reciprocation but everything to do with following rules and keeping up the appearance of being normal.  Sad.

Thursday, November 15, 2012

Youtube, Max, Big Bang Theory, IEPs, and dinosaurs

The other day I had a very memorable encounter with my little Aspie, Marty. We were both sitting on the couch. He was watching “youtube” on the living room TV, and I was doing something on my laptop. Marty has been fascinated with the fact that he can watch his favorite youtube videos on DirectTV. He even waits patiently until I am done watching my favorite shows [well, he still asks every 10 minute, but at least he is able to contain the yelling – I can deal with the aggression-free nagging]. He’s growing up. He likes to know that I’m interested in the things that he likes. As we sat side-by-side watching Pinetree Junction on youtube, Marty would comment about different things and look over to see if I was paying attention. He seemed so happy. I leaned over and gave him a kiss on the forehead; at that moment I was so proud of my child. In spite of his challenges, he has genuine moments of happiness, and I am so glad that I get to witness this.

Earlier in the week, I had a conference with my oldest son, Max’s teacher, the school psychologist, and school counselor about my concerns with Max’s inattentive and sluggish behaviors at home. Well, come to find out, Max, is a socialite and quite the “chatter bug” at school. Because he is such a good student, his teacher puts up with him. He will always comply when she has to remind him to remain seated and stop talking; he is the first to finish his work, and usually tries to socialize when his work is done. Thankfully, his teacher allows him to read books while she instructs the rest of his classmates. She commented that she can tell that Max “checks out” once he has completed his work and pretty much tunes her out while she is giving the lesson. She suggested that he may be bored and probably needs to be tested for the gifted class. My response, “No thank you, I already have enough problems getting him to finish his work at home.”  I can’t imagine having to deal with him having additional homework and more responsibilities just to be able to say that he is “gifted”.

Max’s teacher confided in me that she has a daughter with ADHD Predominately Inattentive, and her daughter wasn’t diagnosed until middle school. She is currently on medication. Perhaps this is why Max’s teacher has patience for Max’s moments of impulsivity. He is a good kid that really seeks to please his teachers; most of his teachers praise him for his good manners, kindness, and willingness to help his other classmates; however, his flighty behaviors at home are driving me bananas. Subsequently, I left the meeting with a pamphlet about ADHD, a couple of useful ADHD websites, and a recommendation to see Max’s pediatrician. Because Max is above average, the school system cannot do anything in terms of seeking a formal diagnosis. Max’s ADD tendencies do not affect his school work…Yet. However, it was nice to have the validation of my feelings. I guess having a diagnosis is really not that important until he needs medication or an IEP or 504[Individual Education Plan].  I must admit I often chuckle at the idea of having one child that is a social butterfly and another child that is usually socially inappropriate.

On another note, I’ve been watching the “Big Bang Theory” and I am very surprised at how entertaining it is. At first, I thought it was all about poking fun at the “nerds,” but after watching it, I can see how it showcases the cheerful lives of some individuals in society that are socially awkward; they deserve the limelight too, right? Sheldon is a high-functioning autistic adult on overdrive, and his room-mate Leonard has the compassion of Mother Theresa and the patience of Job. The other characters all have their quirks, but I think Sheldon is the only ‘diagnosable’ one. The Indian guy appears to have Selective Mutism though; a disorder that is rarely explored on TV. And, I bet that Penny has a touch of ADHD, too. Any whoo, it gives me great pleasure to watch, “The Big Bang Theory” and to have hope that my little Aspie will have a place in this world, be proud of his diffability, and have like-minded and sympathetic friends to share his life with.

Thankfully, Marty now has an IEP to help him develop his social and adaptive skills. So he’s now in ”the system” as a special needs kid. I’m sure his dad will be proud. Not. Hopefully, dear old Aspie dad can pull his head out of the hole of denial that he dug for himself so that we can work together to do what is best for our child. I’m also hoping that he [Aspie dad] takes the fact that his children need health insurance more seriously because both children have now been referred by their schools to see a pediatrician. In the event that I secure a full time job soon, I plan to get a divorce and work on getting me and my children insured.  On a more positive note, my mom is coming to town for the holiday. I am looking forward to having her company, shopping Black Friday, and gorging on her fabulous cornbread dressing and greens, yummy. Marty loves his grandma, but is often fearful that she might spank him. And in many cases of his inappropriateness she does. LOL. She’s old-school, but quickly evolving to consider the unique needs of her special grandchild. Speaking of Marty, he is slowly adopting a new interest: Dinosaurs. Well, can’t say I didn’t see that coming, but it is nice to talk about something other than trains.

Thursday, November 8, 2012

My latest rant and some Asperger related books I am interested in

While relishing in my elated emotions of having the president that I voted for re-elected, I realize something very profound.  I always talk about how having an African American president gives me hope that my sons can someday pursue this office. It’s as if President Obama broke the glass ceiling that once prevented minorities from holding the highest, most significant, position in the free world. I think the future will afford my children with many opportunities that their grandparents could never have hoped for. I know that my oldest son will be able to pursue all of his dreams free from racial barriers. But, I realize in all my wishful thinking that I have not had the same dreams for Marty, my youngest, that I have for Max, the NT. It’s as if I never considered that my second born would be neurotypical, much less explore the ambitions and life goals that most humans strive for. I spent most of my pregnancy with Marty wishing for a girl because I rationalized that the probability of a girl having Aspergers was far less than that of a boy born to an Aspergers’ male. Years of researching and reading studies about Autism and Aspergers had me convinced that one or more of my children born to their Aspie father would also have Aspergers. I theorize that men with Aspergers have a 25-50% chance of having a child with Aspergers. Similar to children born to parents with the trait for Sickle Cell Anemia; even though the parents only carry the trait, the chance of the parents having a child born with the debilitating disease Sickle Cell is around 1 in 4.  

This elevated genetic factor is not the case with classic Autism though. I believe that those with Aspergers and co-occuring disorder like ADHD, Sensory Processing Disorder, ODD, or OCD will likely pass one or more of those traits on to their children. I also think, somehow, one or more parent [NT or Aspie] having an autoimmune disorder is connected with Aspergers/Autism and may strengthen the heredity factor.

With all that being said, I really never had a chance to go through those feelings of losing the dream of having a “normal” child.  I knew that my second son would be affected by Aspergers in some form or fashion. From his very first day on earth, he was different. I just knew it. When he was just a few days old, he had a fixed frown on his face…was he contemplating his life as a newborn? Lol. Surely, he wasn’t mad. But, as he became a toddler, he became angry…argumentative and defensive. He didn’t even have a vocabulary of words, but found a way to defend his position using baby babble.  It was hilarious to witness.

Hopefully, Science will catch-up with the increasing numbers of individuals dealing with Autism and design a test to screen for Aspergers and Autism during infancy. When my youngest was a baby, I found a study about tilting an infant to one side to identify possible Autism. If the baby followed the direction of the tilt without resistance or trying to pull themselves upright then they are suspected of having Autism. Well, that exercise does not work to identify Aspergers. I think Aspergers children are hyper focused early in life, they are rigid with their routines and preference for caregivers, and have fixed interest; even as infants  they don’t seem to desire much social activity other than the regular visits from the caregiver that they have formed an attachment too.

Any whoo, I wanted to recommend some books that I have found very enlightening and helpful. I became fascinated with the books by brothers Augusten Burroughs and John Elder Robison. Running with Scissors and Look Me in the Eyes, both are memoirs and both detail the brothers challenging lives growing up with parents suffering from mental illness. John has Aspergers Syndrome and suspects that his father is a fellow Aspie [as well as a former alchoholic]; his mother had a series of psychotic breaks that caused her to abandon her youngest son, Augusten, when he was 13. Incidentally, the mother, Margaret Robison, has her own memoir, The Long Journey Home, which revisits her painful childhood, failed marriage, and latent attempts to fulfill her life’s purpose [creative writing].  I think it is important to consider each family member’s own point of view to understand the dynamics of surviving a family with multiple mental health disorders.

In addition to reading the Robison family memoirs, I am also reading Quirky Kids, The ADD Answer and Asperger Answer Book, The Behavior Survival Guide for Kids and Breakthrough Parenting for Children with Special Needs. I just found out about a book for NT family members dealing with the emotional stress of having family members with ASD: Aspergers Syndrome and Adults: Is anybody listening? I am going to order it next week, and provide a review at a later date.  I will probably buy The Journal of Best Practices at some point, but because it is meant to support a functioning marriage between an NT and Aspie, I am really not as interested in reading it.

This is off topic, but worthy of mentioning. Last night, I verbalized that I needed to stop yelling so much at my youngest son, Marty. My oldest son was in ear shot, so he chimed in and agreed. Wow, thanks for making me feel worse about myself. Anyway, Max seems to think that I often yell at Marty when he is, "just trying to play and have fun." So, I reflect on this observation and conclude that the Aspie in Marty doesn't hold grudges or hold on to "stuff" like I do; he has the meltdown/super tantrum and he's over it. You see, after Marty has harassed me about going to the beach on a frigid day in the middle of November, I am wore out trying to explain why we can't travel over 300 miles to get to the beach on a school day. Throwing your sock and shoes around in the car isn't going to make me get your sandles and take you to the damn beach on a Wednesday night. Besides, I still haven't come down from the distess that he initiated while we were at dinner because he  [Marty] was furious about that Denny's was really just a restaurant and not a diner because I promised to take him to a diner. WTH. Then he insists on keeping his coat on the table and not besides him in the booth. And, why didn't I get him eggs with his meal. So, yeah, I am really annoyed by the time we get home and would prefer to be left alone for a moment and not sucked in to giggling at Marty's attempts at being humorous and saying, while laughing, "I am going to kill you in 5 minutes," chuckle, chuckle. Clearly, I have the 'frowny face' and not in the mood to watch Marty jump and do flips on my bed, "Get out!" and "Take your brother [Max] with you!" 

Luckily, Marty is really not affected my my negative mood, and only seems upset when I try to redirect him from his preferred activity. I think his ability to get over things quickly is a great buffer for his feelings. When he doesn't get his way or is confused or anxious about something...he has a tantrum and is done with it. However, If the same happens to me, I am thinking about it for the rest of the day. In fact, my stress over the situation might roll-over to the next day. I am going to learn a lesson from Marty's playbook and...just get over it! Marty doesn't set out to disrupt the event or ruin the family outing. He can't help that he likes predictability. So, as the adult, I need to consider these things and try to make his 'outings'  more predictable and less complex. Perhaps I should have asked him what was his version of a 'diner'. Would that have made his outing more pleasant? And why was he so adamant about going to the beach? Was this his way of escaping something...maybe he had a bad day at school. Why does he need to control everything? He wanted silence in the car; what the heck was that about? Oh well, I'll probably never know the answers to those question, but I do know that my little Aspie is happier when his environment is free from surprises and unforeseen obstacles.

Tuesday, October 23, 2012

ADHD inattentive, Highly Sensitive, and the Type A personality

So last week, I told you about Marty’s evaluation with the preschool special education. This week, I am becoming more aware of the problems with my oldest child, Max. First, a little background information: over the weekend, I tried to pick what I thought was a pimple; turns out, it was actually an infected ingrown hair follicle. Just Great! After a few days of pain and having my eye swollen shut, I drove myself to the ER. Yes, the uninsured should seek medical care in spite of the impending medical debt that will follow. The ER was actually a very positive experience. I was in and out in hour. ‘Feel good’ drugs in tow, I headed home.

As I mentioned in a previous post, I am still legally married to Marty’s dad, the suspected Aspire [who clearly has ADHD as well). We separated about 4 ½ years ago, but agreed to share the same house, at least until I finished grad school. Currently, I am looking for full time employment; though I do have a part time gig. With that in mind, Marty’s dad, still feels duty-bound to me as a husband [I guess]. When I texted him to let him know that I was in the ER - with the introduction, “Please don’t be alarmed;” he calls to ask me to “try to arrange a payment plan for the ER bill.” I got no, “How are? Are you in pain? or what did the doctor say?” Although I think he cared that I was in the ER for a painful boil, I just think he doesn’t know how to respond to what he perceives is a crisis. He did, however, offer to pick me up from the ER? After I dismissed his concerns about the cost of the ER, I can tell he was still on edge.

Any who, I come home to mounds of laundry, dirty dishes, and a cranky Marty. Clearly he was over stimulated. His dad and his brother dragged him along on their golf venture; which is Aspie dad’s latest obsession. Marty, apparently, got angry while at the golf range and flung his golf club hitting an older gentleman in the leg. The same golf clubs that he did not want, but was forced to take as a ‘birthday gift’ from dear ole Dad. The trio also went to the Titanic exhibit for the fifth time. Consequently, Marty has become a fan of the Titanic, and when it is mention he will talk in depth about the Titanic sinking. The Titanic has been a special interest for Aspie Dad since his childhood [along with the Civil War history and the paranormal].

Back to the oldest son; as I recover from my abscessed eye, I realize that I have become very irritable. No one is here to assist me in my time of need: Aspie Dad has checked out [a response to not being able to understand or process the situation], Marty is probably just upset because my eye is swollen, and I look completely different [he noticed and commented when the swelling went down], and Max, well – he worries about me but internalizes his feelings fearing that the ‘worst might happen’. Because I am very uncomfortable and exhausted, my tolerance has dropped, and my oldest son, Max’s inattentiveness, sluggishness, and daydreaming is now driving me up the wall.
I had a long discussion with him last night about how I needed him to step-up and help out more while I am recovering. This means, “Get up in the morning when you are asked the first time.” Specifically, Get dressed, brush your teeth, hair, and put your socks and shoes on without being asked. In that order! Well, this morning, after the first two attempts to wake Max up, I’m frustrated. One pop to the leg; he looks a little stunned, but still moves  very slowly out of the bed. So, I ask him if he forgot what we talked about the night before. He says no; then begins to cry. He mumbles that he tries to stop imagining and forgetting stuff, but he can’t. A few weeks ago he admitted to being easily distracted and sometimes impulsive in class [bluting things out-of-turn in class]; now, I guess he realizes that he’s a “daydreamer.” I empathize with him and try to console him, “It’s not your fault that you imagine so much; you are very smart; you may just need a little more help to focus,” I explain to him that I still need him to try to help me out more around the house. He seemed to understand. Even though we are running late for school, before we left, he filled the dog’s water bowl without prompting.  I go out of my way to acknowledge that gesture and give him extra praise.

In the aftermath, I am asking myself, “How did my Type A- @ss end up with 2 special needs kids and a low functioning husband. Well, my theory is this: my mom was raised by a mother who lost her own mother when she was a child. Translation: my grandmother was raised by her father, 4 elder brothers and an older sister, so she is on the very low end of being maternal [IMO]. Therefore, my mom is kind of the same way. I can’t remember a day when my mom ever told me that I was pretty or that I did something very well. She was very strict and protective, but didn’t do much outside of buying me gifts to express her love for me. So, I grew up very shy and insecure; thus, I married an individual that was also insecure and had trouble expressing his emotions. Does this make sense? It’s kind of similar to the theory that some children that witness domestic violence grow up and enter into volatile relationships, i.e. the Chris Brown and Rihanna tragedy. No, I am not trying to call myself a “victim,” I am over that. I just want to make sure that I am doing adequate exploration of my own feelings and motives in order to process, “how I got to this point.” Oh, I forgot to mention that I am a Highly Sensitive Person (HSP), so add that to the rest of the baggage in my situation.  As a HSP, my feelings and emotions run deep, I am very sensitive and highly empathetic, yet I married an individual that has trouble expressing, reciprocating, and recognizing emotions in others. So you can only imagine how much I struggled with my own self esteem earlier in my marriage. 

Type A HSP – how do I control this situation without losing my mind? Luckily, the HSP side of me has lots of tolerance and can usually empathize with my children and their father, even on a bad day. My oldest son also has traits of being highly sensitive. His behavior led me to recognize these qualities in myself. Since he was a toddler, he has been very sensitive: will cry at the drop of a dime and over reacts to things that most kids would easily shrug off, like a scrap on the knee. He would give away all his toys if he could because he believes this will please his friends. He wants everyone to be “happy.” He was recently teased by his friend for going on-and-on about a caterpillar being killed. You see the friend has no remorse when killing bugs during their bug catching sprees; but, Max tries very hard to prevent harming the bugs. He loves fishing, but hates to bring the fish home. He insists that we only, “catch and release.” Max is also easily frightened and rarely partakes in risky play like riding a skateboard or climbing a rock wall. And, like his mom, he feels everything very deeply.

Knowing the facts about my children’s challenges helps me parent them in a way that is beneficial to how they think and process information [stimuli]. For example, with both of my children, strong punishment does more harm than good. That means, spanking them makes Marty become more aggressive and my oldest child, Max, more distant. Both of my children have valuable gifts and talents that I plan to help them build upon so that they can reach their maximum potential in life.  Still, I look at their father and I realize how not being told that he has special needs or a dif-ability has made him ashamed of how others might think of his differences as well as sons’ challenging behaviors. He is in such denial that he can’t even recognize that he does have problems in his interpersonal relationships and with his parenting style [aggression and dominance].

Saturday, October 20, 2012

The unofficial diagnosis

Marty was evaluated this week by his preschool special education [special needs] department. Going into this appointment, I was a little anxious. I hoped that the special education department would be able to provide me with the answers that I wanted, like: how do I get this child officially diagnosed?, does having a diagnosis of HFA, PDD, or Aspergers really make a difference?, when can my child get some extra help for his behavioral issues? Well, Marty aced all of the tests gauging his learning capability. I wanted to scream, “News flash, Marty does not have a learning disability!” I sought out help from the special education department for a specific reason: behavioral and social challenges at home.  His speech was evaluated too; Nothing is wrong with his speech other than his monotone voice, inflection impairments, pragmatic speech, and oh, his tendency to talk endlessly about TRAINS. During the evaluation, Marty remained calm, no rude outburst or mean glares; I think he actually enjoyed it. He even showed off some of his stereotypical Asperger behaviors like flapping and flicking his fingers.

To my surprise, Marty’s preschool teachers were also given a questionnaire and they relayed the same sentiments that I have: Marty has difficulties with transitions, he doesn’t work well in a group, and he prefers to play alone. After all that, the special education team of evaluators told me that Marty was simply too smart for the special needs class. They believed that he needed to be in the class with typically developing children. Although, they got a kick out of his constant talk of Thomas [the train] and attempts to monopolize their exchanges with facts about trains. He even told an evaluator, when she asked where was his home? “It’s the house where all the trains are.”

Thankfully, one of the evaluators happened to have a PhD in autism spectrum disorders [literally, lol]. She observed Marty’s quirkiness [noting that he does, in fact, talk kind of “robotic”] and concluded that he most likely has Aspergers or PDD; though she believes that having the official diagnosis is not as important as implementing social skills training and working on counteracting some of him problematic behaviors at home. Apparently, the special needs preschool class works with children that have severe disabilities and challenges that hinder their learning ability. Marty’s issues are more social and have a limited effect on his educational learning process [I guess]. Thus, his social and behavioral issues can’t really be addressed until he is in kindergarten. Once he reaches kindergarten, I can ask his school to have him evaluated for Aspergers by a psychologist. Until then, I should use community based services to help me with those ‘Aspergerish’ challenges.  So, I really feel like I am back to square one…searching ‘the system’ for answers to a problem using my sparse financial resources.

If my kids had health insurance, I’d probably be able to go to a developmental pediatrician or psychiatrist. But without adequate health insurance and funds, I have to get creative, tap into my psychology background and start working on some kind of behavioral interventions for my child on my own. Never in a million years would I have thought that I would have a child with autism, let alone marry someone with HFA. Nonetheless, I love my little Aspie, Marty; he is a light in my life. I look forward to sharing our journey together and doing my part to make life easier for him and others like US. Because, not only do children with an ASD need lots of help, parents, caregivers, and moms of those children with autism, Aspergers, or any other disability and special needs, require a lot of compassion, support, and help coping with the demands of raising children that act and think differently.

Monday, October 15, 2012

My depressed rant; some days, I go there..

I have been trying to hold it together for the past six months, but depression keeps on rearing its ugly head. Thoughts of failure, lack of understanding, guilt, and hopelessness tend to plague me on the “rough days”. See, for the past three years I have been pursuing my master’s degree. My goal was to land a “good job” and become independent again, so that I am able to financially provide for my children. Well, I’ve had a set-back looking for that “good job”. To top that off, my kids and I are uninsured; thus unable to seek quality mental healthcare or medical healthcare. This past summer I discovered a lump in my breast; luckily, I was able to find a non-profit organization that paid for the mammogram and biopsy. Thankfully, the lump is benign. But it is growing.  Now, I am pressed to find a job with health insurance so that I can have this lump removed and have my youngest son, Marty, properly diagnosed and treated.

Marty may also need medical attention for his urinary incontinence. He has been spontaneously urinating on himself throughout the day and during the night. On an average week, I wash his bed sheets four to five times. His clothes reek of urine because I can’t seem to wash the smell out; and he doesn’t appear the least bit bothered by his saturated underwear and pants. This morning, I was greeted by wet bed sheets again; I lost my patience with Marty and became visibly upset. “Are you mad at me, please be my baby,” he yelled. I tried to reassure Marty that I was not mad at him; I could see the uncertainty in his eyes. He cried for several minutes as I tried to console him, “be my baby; I Iove you.” I kept telling him that I will always love him, and he will always be my baby, but he was still unsure. Finally, I convinced him to lay down as I continued to get the boys ready for school. My oldest gets dressed and tries to get Marty to turn the TV off and come downstairs; I can hear my oldest, Max, yelling, “stop crying; you’re always crying.” The situation escalates as Marty comes downstairs and hears the torrential rain outside. He starts screaming, “I don’t want to go outside.” He refuses to put on his shoes and claims that his windbreaker hurts his arms. By this time, I am over it. I pop Marty on the leg and yell, please put your shoes on. I sense the confusion on his face; he yells at me, and starts running around the house. I fetch him and his shoes, cover him with my sweat shirt, and run to the car. In the car, Marty is still crying; guilt ridden, I apologize for losing my temper. But, he’s hurt, he’s insecure, “I thought I was your baby; you’re mad at me; I love you!” He is inconsolable; and will not stop crying. I feel like crap.

I think this morning’s meltdown was intensified by what happened yesterday.  Marty joined his older brother at my neighbor’s backyard barbeque. Max didn’t want Marty to stay at the barbeque because he feared Marty would act out and behave badly, but my neighbor (and friend) insisted that I leave Marty and go, “do something for yourself.” She wanted to give me a break from the kids, and I was very grateful for that gesture. Max, on the other hand, did not want to share this event with Marty.  When I picked the boys up, Max confided that Marty embarrassed him with his impulsive screams and inappropriate use of the word, “stupid”. “Why did you have to leave him?” Max kept asking, “You know how he acts.” Marty was obvious to his brother’s complaints, but the stress from all the stimulation and not knowing how to fit in weighed heavily on Marty.

Marty told me that the kids didn’t want to play with him. He couldn’t understand why. It pains me, as a mother, to think that my child has to endure these feelings of heartache at such a young age. True, he prefers to play by himself, but on the days when he wants to be social, he often gets rejected. For some reason, he cannot comprehend that calling kids stupid, yelling, and screaming is not the way to win friends. It’s like he has no restraint when it comes to controlling those aggressive and angry impulses. I wish I knew how to fix this problem for him. All I want is for him to be happy. And, when he’s had a bad day and is misunderstood by his peers, I want to be that safe place for him. Today, I felt like I failed him. I got annoyed with him and lost my cool. I’m so stressed out by my own situation: becoming a displaced homemaker, divorcing his father, and looking for a job, that I barely have enough left in me to give him the affection and security that he needs.

 This [situation] isn’t fair. “I didn’t sign up for this!!!!” I think to myself, but my pity party can’t last long. I have two kids depending on me to hold it together; therefore, I cry in silence, hoping that one day things will change, and I will have it easier. We will have it easier!  If my stress is relieved, I can be the long-suffering, accepting, and nurturing parent to Marty and Max. Marty needs extra encouragement and to feel loved unconditionally. I can’t imagine living in a world that is a maze of perplexity and apprehension. If I can provide that consistent and predictable place for Marty, I believe that I can make his world a happier place. And he deserves to know that Mommy’s love last forever.

 

Saturday, October 6, 2012

Helpful websites about Aspergers and Autism

These are some of my most frequented websites. I like them because they provide tons of information and resources; plus, they are educational and easy to read.

Autism Society – Autism Source
Online Resource Database

My Aspergers Child – help for parents of children with aspergers syndrome

I Love ABA – all about Applied Behavioral Analysis

Help Autism Now Society - HANS is dedicated to helping families by supporting physicians and other professionals in the early recognition and diagnosis of autism.

Autism Research Institute – The Autism Research Institute (ARI) is the hub of a worldwide network of parents and professionals concerned with autism

The Online Asperger Syndrome Information and Support (OASIS) - a single resource for families, individuals, and medical professionals who deal with the challenges of Asperger Syndrome, Autism, and Pervasive Developmental Disorder/ Not Otherwise Specified (PDD/NOS).
*This is Tony Attwood’s official website; he is a leading authority in all things Asperger.

Global Autism Collaboration - The mission of the Global Autism Collaboration (GAC): To network and collaborate with autism organizations worldwide to generate necessary legal and social change to deal with the global autism health crisis.

The Gray Center for Social Learning and Understanding - A Social Story™ describes a situation, skill, or concept in terms of relevant social cues, perspectives, and common responses in a specifically defined style and format. The goal of a Social Story™ is to share accurate social information in a patient and reassuring manner that is easily understood by its audience.

Help for Aspergers -

HELP WITH Autism, Asperger's syndrome & related disorders

Maxine Aston specializes in working with individuals, couples and families
who are affected by Asperger Syndrome.
*Maxine was once married to a man with Aspergers Syndrome.

Families of Adults Affected by Aspergers (FAAAS) - Our mission is to offer support to the family members of adult individuals with Asperger's Syndrome

Positively Autism - Autism newsletter with free articles, resources, and teaching materials

The Color of Autism – A non-profit organization committed to educating and assisting African American families with Autistic children. Autism affects children of every race, ethnic group and socioeconomic status.

Autism News, Views and Resources - Hosted by Nicole Flamer, mother of three on the autism spectrum, writer, advocate and co-founder of Autism Child Care Connection - inclusive child care, parent support and advocacy center.

STAA provides autism awareness, support & special needs resources to women who care for family members on the autism spectrum and/or who have other special needs.

This blog is packed with great resources and information on Aspergers. The author is an adult man with Aspergers [and 2 children on the spectrum].
http://life-with-aspergers.blogspot.com/

Dr. Kathy Marshack specializes in treating Asperger Syndrome and relationships.
http://www.kmarshack.com/Asperger-Syndrome.html

Minority mom's blog about her family of male Aspies.
http://www.confessionsofanaspergersmom.blogspot.com/

Best darn AS Partner support group...this kept me sane in the early days of my marriage.
http://forums.delphiforums.com/n/main.asp?webtag=ASPartners&nav=start&prettyurl=%2FASPartners&gid=159271086

Friday, October 5, 2012

Michael, the real Black Aspie

A few days ago I stumbled upon an interview of an African American male who admits to having autism. Yes, a forty something successful black man is autistic and embracing the label. This guy even started a non-profit organization to support impoverished families in their efforts to pay for therapeutic services and other treatments for autism. I was especially impressed to hear that Michael [a former music producer for MC Hammer] credits his mother’s strength and tolerance in raising him to explore his musical gifts. Incidentally, 2 of Michael’s adult siblings are also on the spectrum. His mom is NT; in her interview she expressed how she always felt that her children were ‘different,’ but she was able to train them by modeling (behaviors) and encouraging them to pursue their inherent talents. I guess I am shocked that Michael and his siblings complied with their mother’s suggestion to be tested for Aspergers.

Michael’s eagerness to advocate for those with autism is so inspirational. My experience with my children’s dad has been more of denial and neglect. In spite of meeting 3 of the 5 criteria for an Aspergers Syndrome diagnosis, taking the Aspie Test and scoring high for Aspergers, and having a licensed psychologist tell him that he definitely had traits for Aspergers, my children’s dad does not support me in my concerns about Marty’s [autistic] behaviors. Marty’s dad believes that everything that Marty is doing is just a phase. He thinks that I am just obsessed with Aspergers and that his own “differences” and quirks are attributed to his high IQ and strict religious upbringing.  Last year his mother sent me a note suggesting that I read the book by David Finch, The Journal of Best Practices. David has Aspergers and was diagnosed in his thirties. In his efforts to understand the neuro-typical needs of his wife, he began to journal in depth about the occasions that called for him to be especially attentive or sensitive to the needs of his wife and their young children. Thus, another New York best-selling author was made.

Michael, the black man with Aspergers, shared in his interview that he has been divorced twice. Sadly, individuals with Aspergers have higher than normal rates of divorce. I think that individuals with Aspergers may find better success in intimate relationships if they date others with Autism/Aspergers or find partners that have lower needs or desires for emotional reciprocity and intimacy. Being in a relationship with a partner that doesn’t understand, relate to, or seemingly care about your feelings is very isolating and detrimental to one’s self esteem.  I often complained to my soon-to-be ex [Marty’s dad] that I wished he could see my point of view. I relied on analogies and dramatic scripts to try to get him to “understand” me.  This exercise was draining, and I quickly grew tired of trying to figure him out; and simply thinking about being in a long term marriage with him became depressing.

I can see that Marty’s dad has low self esteem; he was teased and bullied as a child. I think he always knew that he was different from his peers. I imagine that it is very painful for him to have to address these differences. Especially, if you believe that those differences don’t adversely affect your life or the lives of your family members. Marty’s dad has had 4 different jobs in 8 years, but the job terminations were never his fault. Right, yet he is the common denominator. I think that my children’s dad is afraid that Marty having a diagnosis of Aspergers or autism would make him, as the father, look inferior or somehow disabled. Perhaps he might even believe that he is partially responsible…I doubt it. At this point, I no longer discuss my concerns about Marty with his father. I feel like a single parent with no “baby daddy” when it comes to making important decisions for my sons. Okay, I’ll get off my soapbox now; back to Michael, the black Aspie; he talked about how autism affected his mom, and this really moved me:

Q: What keeps you going? A: Knowing how much my mom sacrificed emotionally and physically. She suffered many emotional setbacks and even a stroke, brought on by emotional stress, while continuing to help me, my brothers and father. I owe her and I owe no less to myself and the autistic community.


Reading this made me realize how my actions and advocacy for Autism/Aspergers could help, not only my own family, but other families living with individuals on the spectrum. I write my blog because [number one - it helps me to cope with my stress], it gives me an outlet to share my thoughts, my feelings, and my ideas without fear of reproach.  I believe there is someone out there just like me, and if I can reach that person and let them know that better days will come and support is just a click away, than it will have made all this writing/blogging well worthwhile.

Check out Michael and his mom’s interviews at:

http://www.blogtalkradio.com/aspergerwomen/2009/06/22/natalee-buckholtz-and-cathy-gronefeld-derringermoms-from-different-generations-wkiddos-on-spectrum

Friday, September 28, 2012

The movie about a black man with Aspergers

Recently, I found out about a movie depicting a black man with Aspergers. I was very interested in finding this movie, so I could see just how authentic it was. Of course, it’s another love story; “If You Could Say it In Words.”  Well, minutes into the movie [viewed on snagfilms.com] I thought to myself, if this guy has Aspergers, it must be the mildest form that will possibly go undetected by those of us who actually live with stereotypical Aspies. This guy was thoughtful, bringing his date (a.k.a. one-night-stand) coffee and pastries in bed, he was appropriately affectionate, and surprisingly perceptive. Plus, he was very sexually active. I was shocked. The only quirks that I picked up on was the male Aspies obvious shyness in social settings, his extended knowledge of certain topics, formal language, and aversion to loud music; and, toward the end of the movie the character had a mental break and began to self injure. The female protagonist seemed to really be the one with “issues”. After skipping through the first forty minutes, I was still trying to figure out when the real Asperger was going to come out. The female lead character, a white woman who was having an affair with her married boss, seemed too absorbed in her own arrested development and troubled past to realize that Nelson was supposedly “different”.  Her elaborate story-telling, lack of regard for professional boundaries, and tendency to talk to herself made her, "suspect," in my opinion. Some of the characters seemed out of place too, like the female lead’s obnoxious black female room-mate that frequently used profanity and slurs. Who was she supposed to represent? In my opinion, perhaps Nelson (the main character) had a few traits of Aspergers Syndrome, but I felt that he was way more neuro-typical than autistic.  Still, I enjoyed this vanguard film and totally appreciated the writer/directors attempt to put adult autism in a more realistic, less stereotypical geeky, light. As a black women, I saw Nelson as more of a nerd or what some blacks would consider, “really smart;” I think that some blacks are less likely to put a derogatory label on an individual that is socially awkward though academically gifted. Growing up, family members that excelled in school were praised in spite of their “differences’. Those cousins who failed in school were the “undesirables”. For example, my soon-to-be ex has several degrees: engineering, math. This is nothing to sneeze at in my family. Those credentials can get you lots of praise and bragging rights. Back to the movie, I find that depicting autism romance does not really provide much insight on how they love or how they feel about intimacy. Life is not all romance (especially for an individual with social challenges); many Aspies may find more happiness in simply having a lifelong companion: loyal pet, loving family member, or a kind friend; and plenty of opportunities to share their special interests. I don’t think sex, love, and relationships are high on their “to do” lists in life. I believe that many Aspies/Auties feel pressured by society, family members even, to adapt to what is considered a normal life: finding a mate and having children. I don’t know many Aspies that made their children a ‘special interest’ unless, of course, that child has a common special interest, like trains, for example. Aspies’ wives may be the ‘special interest’ or obsession during their courtships with an Aspie, but once “real life” takes place, the demands of emotional reciprocity and becoming a responsible husband and father are often too much to handle, and the Aspie retreats to their comfort zone of self absorption and restricted interests. In my relationship, I always felt more like a “possession” or a “trophy,” my mom used to often comment that she thought my soon-to-be ex was obsessed with me. Thus, my romantic experience with an individual on the spectrum has not been positive. And, for the most part I have felt like a caregiver for an individual that thought marriage was going to be more like carefree dating and less like having adult responsibilities and holding oneself accountable. I’ll refrain from getting on my soap box about how my relationship with an Aspie was filled with a lot of empty promises, unfinished projects, avoidance, defensiveness, and isolation. Thank God he is a “nice guy” because I’ve heard many stories of extreme verbal abuse from some of the Aspie Wives with aggressive and angry Aspie husbands. Any who, “If You Could Say it In Words” is an enjoyable movie and many an Aspie spouse or girlfriend will relate to the subtle quirks in Nelson’s character [like impulsively correcting grammatical errors of others]. I would probably follow it up with the documentary, “I Think We’re Alone Now,” which follows 2 Aspies on their quests to meet the objects of their obsessive love. I’ve seen many of the movies depicting autism/Aspergers. My favorites are: My name is Khan, Extremely Loud and Incredibly Close, The Temple Grandin biopic, and the clay-mation feature film, Mary and Max [love this one].

Thursday, September 27, 2012

Childhood Asperger Syndrome Test

I found the CAST or Childhood Asperger Syndrome Test to be very helpful in screening my son for a possible ASD.  He scored high - 25, well over the cutoff score of 15. This particular set of screening questions include the key [in the form of the underlined answer]. The assessor gives 1 point for all answers matching the underlined Yes or No. The maximum score is 31; any score below 15 is considered NT or typically developing.
Once a child has been screened [suspected] for an ASD, a comprehensive evaluation with a professional such as a developmental physician or a psychiatrist is required to further assess the child’s condition. In the US, a diagnosis from the DSM can only be made by a physician or a psychiatrist; in some cases, a psychologist specializing in autism spectrum disorders can diagnose this disorder.
UNIVERSITY OF CAMBRIDGE SOCIAL & COMMUNICATION DEVELOPMENT QUESTIONNAIRE - KEY

ASD relevant responses are underlined and score ‘1’. Maximum score possible is 31, cut-off currently is 15 for possible ASD or related social-communication difficulties.  Questions that are not underlined are controls

-----------------------------------------------------------------------------------------------

Please read the following questions carefully, and circle the appropriate answer. All responses are confidential.
1. Does s/he join in playing games with other children easily?           Yes                  No

2. Does s/he come up to you spontaneously for a chat?                      Yes                  No

3. Was s/he speaking by 2 years old?                                                  Yes                  No

4. Does s/he enjoy sports?                                                                    Yes                  No

5. Is it important to him/her to fit in with the peer group?                   Yes                  No

6. Does s/he appear to notice unusual details that
          others miss?                                                                                Yes                  No

7. Does s/he tend to take things literally?                                             Yes                  No

8. When s/he was 3 years old, did s/he spend a lot of time

             pretending (e.g., play-acting being a superhero, or

             holding teddy’s tea parties)?                                                   Yes                  No

9. Does s/he like to do things over and over again,

            in the same way all the time?                                                   Yes                  No

10. Does s/he find it easy to interact with other

              children?                                                                                Yes                  No

11. Can s/he keep a two-way conversation going?                              Yes                  No

12. Can s/he read appropriately for his/her age?                                  Yes                  No

13. Does s/he mostly have the same interests as

      his/her peers?                                                                                Yes                  No

14. Does s/he have an interest which takes up so much

      time that s/he does little else?                                                       Yes                  No

15. Does s/he have friends, rather than just acquiantances?               Yes                  No

16. Does s/he often bring you things s/he is interested

              in to show you?                                                                     Yes                  No

17. Does s/he enjoy joking around?                                                    Yes                  No

 
18. Does s/he have difficulty understanding the rules

      for polite behaviour?                                                                     Yes                  No

19. Does s/he appear to have an unusual memory for

              details?                                                                                  Yes                  No

 20. Is his/her voice unusual (e.g., overly adult, flat, or

              very monotonous)?                                                               Yes                  No

 21. Are people important to him/her?                                                Yes                  No

22. Can s/he dress him/herself?                                                          Yes                  No

23. Is s/he good at turn-taking in conversation?                                 Yes                  No
 
24. Does s/he play imaginatively with other

              children, and engage in role-play?                                        Yes                  No

25. Does s/he often do or say things that are tactless

      or socially inappropriate?                                                              Yes                  No

26. Can s/he count to 50 without leaving out any

              numbers?                                                                               Yes                  No

27. Does s/he make normal eye-contact                                              Yes                  No

28. Does s/he have any unusual and repetitive

              movements?                                                                           Yes                  No

29. Is his/her social behaviour very one-sided and

              always on his/her own terms?                                               Yes                  No

30. Does s/he sometimes say “you” or “s/he” when

              s/he means “I”?                                                                     Yes                  No

31. Does s/he prefer imaginative activities such as

              play-acting or story-telling, rather than numbers

              or lists of facts?                                                                     Yes                  No

 32. Does s/he sometimes lose the listener because of

              not explaining what s/he is talking about?                            Yes                  No

 33. Can s/he ride a bicycle (even if with stabilisers)?                        Yes                  No

 34. Does s/he try to impose routines on him/herself,

              or on others, in such a way that it causes problems?              Yes                  No

35. Does s/he care how s/he is perceived by the rest of

              the group?                                                                               Yes                  No
 
36. Does s/he often turn conversations to his/her

              favourite subject rather than following what the other

              person wants to talk about?                                                  Yes                  No

37. Does s/he have odd or unusual phrases?                                      Yes                  No

SPECIAL NEEDS SECTION

38. Have teachers/health visitors ever expressed any

 concerns about his/her  development?                                               Yes                  No

 If Yes, please specify...................................................................................................

39. Has s/he ever been diagnosed with any of the following?          

Language delay                                                                                   Yes                  No

Hyperactivity/Attention Deficit Disorder (ADD)                              Yes                  No

Hearing or Visual Difficulties                                                            Yes                  No

Autism Spectrum Condition, incl. Asperger’s Syndrome                  Yes                  No

A physical disability                                                                           Yes                  No

Other (please specify)                                                                         Yes                  No