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