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.