Sunday, February 24, 2013

Almost there!

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

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

Marty on the spectrum

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

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

Saturday, February 16, 2013

Autism is my universe

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

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

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

Thursday, February 14, 2013

Pity Party

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

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