One more...You Just Don't Get Me

“You just don’t get me.”   These are the words spoken to me by my twelve year old son last weekend.  The words were said in the middle of one of our endless verbal battles of why he should do something I have asked versus whatever it is he wants to do at that moment.  He is right.  I don’t get him.  In fact, I haven’t really got him since he was about two.

My son’s natural temperament is choleric.  A theory dating from BC meaning he likes to be in charge of everything,  is moody, and highly disorganized.  Add the official tags of ADHD and Asperger’s; he is too busy and doesn’t care what the rest of the family or world thinks either.  I don’t get him.

I want so very much to parent him and have him reciprocate a tenth of our family’s naturally good humor, kindness, and patience.  However, those moments are very few and very far between.  We do celebrate the small steps he is finally able to take with the aid of medications and therapies.  He asked my husband how his day was last week.  We were beyond thrilled for days.

I don’t get why his brain doesn’t seem to enable him to learn from mistakes,

 I think if I can get him more, I could perhaps get more of him, increase his rare smiles and maybe even get the ever elusive hug.

consequences, and solid parenting.  I don’t get why he is embarrassed by my actions; yet his disrespectful behavior is not at all embarrassing to him.  Countless parenting books, doctors, and interventions leave me stymied.

How do I get him more?  Friends offer advice like expect and focus on the positive and ignore some of the behaviors.  My husband and I walk around reminding each other he has special needs and kids do well if they can.    I think if I can get him more, I could perhaps get more of him, increase his rare smiles and maybe even get the ever elusive hug.

SIMILAR POSTS:

• Kay’s three wishes for parents of “hard to raise” kids
• Want to spill your guts? Easy to Love but Hard to Raise is looking for contributors!
• Guest blog: Dating & Raising an “Easy to Love” Child

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This entry was posted in about us, Asperger syndrome, family patterns + dysfunction, guest post, worries + doubts by Adrienne Ehlert Bashista. Bookmark the permalink.

Why?

There are so many days I ask WHY? Why am I in this life? Why am I trying to blog about it? Why do we have to live like this? Why can't he get it? Why can't he act his age?Why can't everyone else understand what we go through? Why can't we help him more? Why can't I win the lotto? It is the ever present present why me, which for the most part I really don't go there. Because WHY? What is the point? I already got the why us part...clearly. The 100 people who have actually told me "wow, I could never do, handle, live with that" pretty much make it clear. And really, my family is amazing, we are chill, laid back and pretty much roll on with the added strife of a special needs child. Most days. Erma Bombeck has a pretty spectacular essay about the Why and WHO gets these amazing kids...I would like to tip my hat to my favorite mom of the seventies other than my own and say, you got it. You get it and see how wonderful we parents are in spite of our sighs, cries, and whys.
The other day in a parking lot I witnessed a man who just totally didn't get it and made it worse. A young mom leading her incessant tantruming child out of Walmart, handling the child in a forceful but consistent way. Borderline of what is acceptable mom behavior. I looked and knew by the repetitive tone of the child, the child's complete lack of respect, the mom's calm demeanor in spite of being firm, the sheer exhaustion her face and the been there done this everyday expression of what was going on. I knew I couldn't help her. I could say, hang in there, you go girl, but really in that moment, she doesn't want that, she wants her kid done and in the car. So, the obnoxious 40 something man yelling at her and causing a scene about the way she is handling her child was completely not helping. He was threatening to call the police and have her arrested. Really? The mom handled it with more grace than I usually do. I ignore and seethe later. She fired off a comment while walking purposefully to her car child in tow, "Have you ever heard of autism?" I thought yes in my head, and I have lived your walk, and have just had to do a similar walk, even though my child is now ten years older. I have spent 10 more years than you living this. The good news, we are all still walking. The bad news, it has been such a hard walk. I know that man has heard of autism. I also know that guy has no idea how autism presents itself everyday all day to the parents of these 1 in 63 kids.

The unpublished drafts are now available to those few that follow.

I stopped this blog because it was hard.  And the years that followed were harder.  But today I was reminded that so many of us are still out there and struggling with stuff that quite frankly people just don't get it.  So here is a few more posts of angst and affirmation. Oh...and I might turn them into a book for this kid.  And give it to him when he is 30.

If you can’t accept us for what we are, then you are not in. We have a child with special needs. I would love to say that just means me and my husband, who have both decided to weather the terrific storm of it all out after artful/awful means and considerations. However, just because we are in is no means our friends and family are in; now I know this. I get it. I would never choose us as the play group you are part of and involved with on a daily basis. We have issues, mainly my number one son. Not us so much, we are easy, breezy, and carefree, until it comes to number one so; at that point we are are uptight, worried, and upset. Because tht child tends to not go along with flow, requires constant attention, and supervision. We have a perpetual two year old. However, he is twelve and acts like sixteen, rude, obnoxious, and all around horrible. Luckily for us, we happen to have some friends and family who have stuck by us for years on end. They get it. They have read the books I asked them to read. They have explained to their children why my son is so different and very often appalling. They have supported me and my child over the last ten years. They have given their all to make us feel included and welcome even though I know it is difficult and a choice you make for your kids. It is the people, sometimes even family who choose to shun you and yours that make me sad. They just don’t get it. They don’t ask for books, and above all else, they do not want their child exposed to yours. Even if they say they support you. Maybe they do, but they don’t want to be around you. Clearly. The disease isn’t catching. But it sure feels like it when your own family is afraid.

My Favorite People

My Favorite People have a lot in common. Not nessecarily with me, but with the people I love. My favorite people love my sons. They get them. They love them unconditionally. They rejoice in thier endeavors, tell them they are amazing, and also support me in parenting them. They have the unique view of seeing the positive and the future. I tend to only see the cluttered, mess of the normal day.

In high school, my friend Michelle and I would write numerous notes to each other. One constant of the notes was a roller coaster we would draw with stick figures. Up and down our stick figures would ride in small boxes. Their arms were usually up and we would draw big oos for their mouths or occaisionally their entire bodies would be barely hanging on and flying off the carts. And yes, sometimes, the carts were empty with a small figure climbing up the wood lattice. High school was tumultous. Thatwas the point. Every day was a new drama or situation, but we were on the ride. You really can't get off. It is called life. For most people the drama and the roller coast ride subsides for the most part. For the parent of a child with special needs, the roller coaster ride really doesn't end. There are definitely moments where you feel like you are on top of the world and you are doing what lots of people can't or couldn't. You are taking something out of control and feeling excited, energized, and happy about the ride. Other days, you are climbing so slowly uphill with no end in sight, you just want to get off the ride and be done. It feels like it will never end and you are going to be stuck or worse, you are going to fall. And perhaps not ever get up. You will be trapped in this state forever. But then the law of physics kicks in and a body in motion stays in motion. I am a tad bit guilty of feeling overwhelmed and stuck, and sometimes hopeless. However, I am happy to report, there is always a new bend, turn, or even a hill that will get and keep you back on track so eventually you can enjoy the ride even if the next drop is around the corner.

Apparently my husband and child have watched a video of "Best Practices"http://www.thisamericanlife.org/radio-archives/episode/458/play-the-part?act=2, in it the husband records best practices in order to get along with his wife. My DH has decided a notebook of Best Practices would greatly benefit our son. Apparently, the first lesson learned by said son is "Don't Mess With Mom." Duh! Seriously? At what age do most kids and husbands get this message? I am pretty sure it is at 2 not 12! I also must admit, I am a mean mom. Get your ass in gear and we go. I don't even ever swear, ask anyone, it is just implied in my tone. I will fully admit I swear often under my breath and just to me. Often. OK so back to my post: Best Practices. It is really easy. All you kids that want a fight, stop it! We, the people that love you, want to love you in the easy way it was designed. Stop being disagreeable, stop being defiant, stop being in the way of yourself. Let some adults help you. Especially the ones offering you advice. Listen. You need their help. And they need your unique perspective.