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.

It is hard not to be upset by an Asperger's child's behavior. Why? Lots of reasons.

1. It appears selfish.
2. It seems manipulative.
3. It is usually extreme.
4. It appears disrespectful.
5. It feels horrible.

But the catch is, it isn't their fault. It is their wiring. It is their body's way of dealing with a world seen differently. I need to remember this fact, always. I need to never forget it even when their behavior that isn't so nice to people has me upset.
My child does not have crutches, a G-tube, or braces. He looks and acts like a normal 'tween. Totally. No offense, (as he would say in his Tween-speak), but he isn't. It isn't fair to treat him like a regular student, when he can't do the work load. It isn't OK to expect him to act as if he cares about others, when he just doesn't. It isn't OK to expect him to do anything, except what he wants to do.
He will do those other items to for others sometimes; but only if he thinks he gets something for it he wants. As for school, there is really no reason to do any of it in his mind, but he understands as part of the rules of school, you just do it.
From the mundane to the really important, it is I who must internalize how my son thinks.

Adopted: Betwixted and be Tween

My son Builder is adopted. He has known he was adopted ever since he can remember. He knows his brother Bounce grew in my tummy. At three, he told me clearly, I was not his mother. I quickly informed him, although he grew in another Mommy's tummy; (f.y.i., much better toddler word choice than "birth parent" which I had used earlier with him...) I was his mom and his dad and I were very much definitely his parents. Throughout the years we have made a life book, talked about his birthparents, and written letters to them. It is a closed adoption so there are no replies or answers. I wish there were, to give Builder some more information about his "relatives." Maybe as a tween trying to figure out who your are, it would be helpful to have some extra people around to relate.
He is twelve now. Builder is full of ideas of who should be the boss, not us. Who should care, not us. And the daily "Why should I's" or "That's not my problem." He vocally states he doesn't want a brother, his actions reveal he doesn't want a mother, he recognizes he needs a father or perhaps just some adult to help him on his way to independence.
This incredible bravado is hard on the brother, mother, and father. And often the grandparents, aunts, uncles, and cousins. We just want him to sort of like us and enjoy being around us. Is it really that hard? I do wonder. I know this is completely normal adolescent behavior. Tweens are trying their best to separate from their parents and childhood roles. But sometimes it seems amplified. Is it because of his Asperger's, ADHD, or being adopted? I am not adopted. I don't know how it feels. Tons of research and testimonials say it can be difficult. Maybe I should ask my younger sister. The sister, a year younger than me, that I didn't so much enjoy at my heels growing up. The one I often told, she was adopted, even though she wasn't. After all, there were no pictures of her until she turned two.

How to Handle Birthday Bullies? Or My Child’s Frenemies.

Unfortunately, I know my son is bullied at school. I also know much of the time he probably doesn’t even know he is being bullied or made fun of by his “friends.” He has Asperger’s and ADHD. Understanding social cues and subtle facial gestures is difficult for my sixth grade boy.
I know fully that my son is often inappropriate with the words and actions he uses. However, my son is never mean spirited. He may be callous, cold, and unthinking. He may be insensitive and unresponsive to someone else’s pain, but he never tries to purposely cause it.
Through conversations with my other son, who is neurotypical and a year behind his brother in school, I am informed of the hostile acts and words said to my older son at recess or in the lunch room. Amazingly, my older son believes these other children in his grade are his friends. Ironically, the school staff also believes these other children are my son’s friends.
Well, I don’t. I know some of the children in my son’s grade are bullies. Their acts are planned out, cruel, and intended to be mean. I have seen my son’s face when he knows the Number One bully will be at an event he is going to attend. His face shows extreme fear even as he says hello to the other boy. He thinks they are still his friends. It has become apparent to me they are actually frenemies. By acting as friends, they can further target their acts.
Today, the bullies left the school yard and came to our home. Today was also my son’s 12th birthday. His “friends” decided to put shaving cream in our mailbox, on our cars, pumpkin decorations, and on the driveway. They had made an X, but after some internet research, I think they might have been trying to make a much darker symbol. Because we live in a small town, my husband managed to track the boys down quickly, report their “mischief” to their parents, and have the boys clean up the mess. Mostly.
The two offenders couldn’t erase the mess they had made of my son’s birth day. They couldn’t clean up my younger son’s dismay when he found out who did it and why he thinks they did it. The boys also were not able to get rid of the disgust I feel when I see them on the street skateboarding away.
I wonder if I should follow up. Do I call or email to let their parents know how glad I am the boys did make an effort to make reparations for their actions? Do I also call to say; by the way, what your boys did is vandalism? They could pay a fine up to $250,000 or spend three years in prison. Of course, they would not at this age, too many people are looking the other way when children misbehave, including my son, and often the bullies’ parents.

24/7

Our eldest boy is almost twelve. At age eleven, I was babysitting most weekend nights for other families with small children. Parenting a child on the spectrum, I am finding you cannot leave them alone or unsupervised for even thirty minutes. In the past month, our child has made horrible decisions about how to handle any time left unsupervised.

Balancing Act

So...question of the day? would you rather have your child survive in a mainstream school or thrive in a school setting designed for how they think and act? Trick question. There is no right answer.

His Bark is Much Worse Than His Bite

So if you are parenting a child on the autism spectrum, you know your child perceives minor wounds as extremely serious and major wounds as insignificant. Well, parenting the Asperger’s child, you might also know they perceive minor insults as astronomical and major insults as nothing.
Example: your child smashes into doorway head first, gashing open head, remains calm and is fine. Your child accidentally trips on rug, no injury, and is devastated, crying hysterically. As the children get older, it is even more mind-boggling. Nope, the bloody wipe out on the skateboard didn’t hurt; but the imaginary bee sting he didn’t really get is killing him.
As a parent of such child of conundrums, I prepare. He loves bandages, band aids, and medical tape. He often sports medical aids found at Walgreens including ankle supports, wrist bands, and the occasional eye patch.
I am always on a first name basis with the school nurse. I know he uses her office as a refuge from the assault of school life. My little sister always did when she was younger . Apparently she needed the support and break from the classroom. For me, a germaphobe, I would really rather die, than lie on one of those scary cots in a room with no windows. Not my son, I fully expect the daily 10am call. Sure, He can have an Advil, Benedryl, and Calamine. It is the ABCs of nursing a needy child.
However, last week, he actually gave me cause for concern. Almost. He was skateboarding at a nearby park. Within minutes he had returned, crying, yelling, and swearing. A dog had bitten his wrist while skateboarding. Scary, right? Except he was wearing a fleece jacket. And when I checked “the bite” there wasn’t one. But he was very upset. He told me he swore at the dog and told the dog he was going to tear its ears off if he bites him again. He also told me he swore at the owner who had let the dog off leash.
I remained calm. I asked if he was OK first of all. Second, I checked the non-wound and acknowledged its alleged presence. Next, I asked if he truly said those things to the owner of the dog. I admit I crossed my fingers behind my back and thought, “surely not.” He replied, “No, but I thought them.” Hallelujah. Progress.
Progress. Therefore, I felt a need to make sure the dog had no rabies, had its shots, even though there was no wound. I wanted to acknowledge Builder’s obviously scary event. But not build it up or give the incident too much power. On the condition, Builder would stay in the car, we found the owner, or actually the owner’s friends and all the facts were cleared up. Including the bite and the bark.

Summer

We are three days away from summer. I am looking forward to it. No more homework, no more books, no more teachers' dirty looks. Because this year was pretty lame academically, I definitely did not make any new lasting friendships with the school personnel as I normally do most years. However, the unstructured nature of summer leaves me happy and unnerved. The good news is I just got a great post from www.parentingmyaspergerschild.com (one of the best websites for all of us parenting children on the spectrum. The blog offers concrete activites and advice about how to entertain the Asperger's child. I already know my husband and I are his main BFFs this summer. Because the few friends he has, most likely will not be around or at camp. But this summer, I think Builder needs more. He needs more. More skills, more support in so many ways, socially, academically, self-esteem wise, and interests. He needs much more than we can give him. He has gone to overnight camp before and loved it. But he didn't come home feeling any better about himself or more socially adept. He actually came home more stressed out and defiant. This year we are going to try a camp designed to help children with Asperger's, ADHD, and NVLD. Money well spent? We will see.

ABCs and IEPs

Just hopped off my broom from my recent IEP meeting with Builder's school. I haven't been too pleased with this year. His teacher interpreted accommodations to mean lowered expectations and in general his teaching philosophy is "whatever." The lack of accountability coupled with my tween's attitude of "whatever" meant no one cared, except my husband and I. And on the really bad nights where numero uno son did not want to do any homework, had thrown his math workbook in the trash, or lied again about the school website homework information being wrong, we too were at "whatever." It is so easy to go there. I really want to, I know he will still pass. Kinda easily, if he never does one more minute of homework at home. (What a glorious thought that is!) But, it isn't O.K., although in my own heart of hearts, I want to free every parent from homework across the nation.
Yes. I could so easily be elected president.
Yes. We want to teach him responsibility. But does it have to be about homework?
Yes. We want him to want to achieve. But does that mean via his homework?
Do we want him to have good study habits? Yes. But can't that be about topics he cares about?
And finally, do I want him to not take a foreign language or band and have two study halls? Yes. We want our tax dollars at work. Homework.

"Mom, does Chris have friends?" my younger son whispered to me tonight as he was going to bed.
"He has a few," I sighed. "Why are you asking about that?"
"Because I saw him sitting alone at recess today," he replied.

I assured Bounce we would talk about more later. He nodded because he knows the conversation might take more than a few minutes. I am also sure Bounce cannot fathom what it might be like to not have friends. He has many friends. He gets invited to birthday parties and play dates. He has many kids to call on the weekend. Builder does not.
Middle achool has been rough. Builder is bullied and not fitting in with

New Year, New game plan

1. I can't believe my last post was in November.
2. But really I can. It seems like the boys haven't been to school very much in the past 8 weeks with all the vacation days and holidays.
3. I don't really like to write about when things are challenging to me. Who wants to just complain and rant?
4. Things have been challenging around here.

I have decide there is a definite ebb and flow to my Builder's mood swings and behavior. But that is as far as I have gotten. Does it correlate with the moon stages? Does it more correlate with his diet and increased wheat intake? Is he just a terrible tween right now? Is the pressure of behaving at school too much for him that he comes home and we all who love him unconditionally get to be sprayed with his frustrations with life in general? Either way it isn't pretty and doesn't make good copy.
Luckily, I have been taking care of myself and reading lots of books for me. I love memoirs of any sort and read them by the truckload. Because the secret of a good memoir is your life has been hard and full of characters who really were selfish. Plus, these authors have made it out of their life trenches and gained wisdom they are now freely passing on to you! It is a beautiful thing.
This month I have learned, the less you control others, the more control you get and you are responsible for your own happiness. Pretty powerful statements. And the best thing about them, these tidbits of advice are pretty easy to implement into your own life. I do not need to depend on the moon stage, my diet, my students' lack of turning in homework, I just need to breathe and realize my child is who he is. He can go to school looking like Pee Wee Herman (a botched attempt at a home made Mohawk) and still live amid the taunts of his classmates. He can swear at me when he is angry and I cannot take it personally and realize he is frustrated by not understanding his world. I can hold him accountable when he is less angry hours later. I can also give myself credit for being the best mom I can be even if I don't always deserve the title.

Guilty as Charged

The problem with writing your thoughts down on paper or computer, is someday, someone might read them. Or in the case of a blog, you either really want many people to read it or you at least, like myself, kinda want someone, at least one, to read it and relate. However, you are fully aware it is writing being made public on the Internet for anyone to see. It is the exact opposite of my sixth grade notebook writings that were carefully hidden under my mattress. The only audience of those twelve-year-old laments was supposed to be me. Except for the time my mom found it and she cried.

Now, dear reader, you will see what I have been charged with in my latest writing class. A veteran, published author of personal essays has suggested that perhaps my essays, "share the beginnings of real emotion...but stop short of real disclosure." Hmmm...well, maybe. She suggested, "Have I always been a self-sufficient person and therefore asking for help is hard?" Well, I haven't spent much time thinking about that until she asked...but, yes, guilty as charged. Getting feedback on a personal essay gets pretty personal awfully darn fast. I think, I feel, if I ask for help, then I am not succeeding. Or upon further thought, I am not perfect. Not perfect as in perfection, but my all is not good enough. And as a parent of a particularly challenging child on a daily basis, I almost always feel like my all isn't good enough. Now, isn't that the truth?
I wish I could ask my mom if all parents feel like "giving their all" isn't good enough on a lot of days. I know she felt it, the day she read in my notebook, I didn't like her.

1-2-3 magic

The title of this post makes me smile because it is also the title of one of the first books I bought to help me parent when I had an eighteen month old. I had actually ordered three books in a desperate attempt to add some positive discipline and order to the daily rebellion. I was embarrassed enough having to order the books. As an experienced elementary teacher and veteran babysitter, I had believed this parenting stuff to be a walk through the park. And it had been. Until Builder started walking and talking. Strong-willed and spirited child is what the experts like to call these children. My mom and dad would call it payback for my teenage years. But really, I was desperate. The days were getting harder and harder. So, I ordered up some books that were promptly delivered to my neighbor, who opened them, and then delivered them to me. "I think these are yours"...they couldn't possibly be for me , I have 3 girls. Great, I thought, the whole 'hood knows I can't parent. As if they hadn't seen my desperate actions in stores or at the park. At any rate, I read those first books, tried it out, and quickly ordered more heavy duty tomes. My early favorite, quickly dismissed, was the 1-2-3 Magic book...all you really needed to say was 1 - 2 and by the time you got to 3, why gosh darn if the child wasn't supposed to be behaving. Ha. As a teacher, I already knew to count DOWN from three because, the clever kids knew you could count up forever, but always knew you needed to end at zero. I then ordered more books and consulted more experts. The prescription from all of these professionals was usually the same. Add more parent to the child. Play their way. Five positives for every correction. Empathy, then read them the rights. Advice much more constructive and understanding to combat their ferocious need to control their world. However, I have recently gone back to adding some 1-2-3 magic my way. If we need to clean Builder's room, I "pre-clean" it. (Think toss one garbage bag worth out before cleaning the room together) Adding a reference source to help him finish some super hard homework..I supply it. (Think 15 words that have "war" in them) And of course the best way to use 1-2-3 magic is to count them in your head very, very slowly as you decide to turn and walk away from the arguments, defiance, or mess.

Building Strengths for Builder

I am usually seeking, finding, investigating the next step, therapy, or group my son needs. But not anymore. I am looking and finding activities that suit his personality and interests. He is now eleven. Well, not really, but that is what age he tells he is to everyone he meets. I am trying to be attuned to his interests and wants. It is a teeter-totter act. I think. Negotiating with these independent thinkers, we call middle schoolers. It is the fine balance of suggestion and knowledge of your child. Some suggestions will be met with rolled eyes and an "OMG." And some will be met with a "really? cool." But it is up to us as parents to present these opportunities to our kids so they can find a strength, a stress outlet, a friend. This week it is a create and skate class...paint and individualize your skateboard. It's cool.