He Calls It Like He Sees It

Recently, I was walking through a parking lot with Adam on our way into one of his activities. Suddenly, a younger boy jumped out of his mom’s car and started tearing through the parking lot. The boy didn’t stop. He didn’t look. Completely speechless,  I watch this scene unfold. The mother begins to scream out of sheer panic. Before I had time to even think about reacting, the mom developed superpowers like the old ‘Stretch Armstrong’ doll, and reached out from what seemed like nowhere  grabbed her son by the collar and started to lay into him. As I am standing there, still in shock, Adam calmly walks over to him and yells:

‘What was your brain thinking?’

Then Adam turns to me and says:

‘Mom needs to tell that boy’s mom to pay attention and to tell him to follow the parking lot rules’

So here’s the thing. ‘Mom’ didn’t need to do anything except wish that I had a big stiff drink in my hand and pray that a huge sink hole suddenly appeared beneath my feet and swallowed me up.

There is no other class that I can switch Adam to, for trust me, I have investigated it. So each week, I continue to drop him off and run into this mother and son and continue to feel mortified. Oddly enough, Adam and this boy have developed a pretty tight relationship since this incident in the parking lot. Adam for sure doesn’t feel one ounce of remorse for his actions and maybe this boy appreciates his honesty. Kind of strange how these things work sometimes….

I go back over the countless times that Adam has exercised his verbal ‘stream of consciousness…Here are a couple of my favorites.

There’s the lady in church who was singing at the top of her lungs one Saturday evening. I could see various parishioners turning ever so slightly, looking out of the corner of their eyes at the woman. Oblivious or not, she just kept singing away, until my son says out loud:

‘That lady needs to stop singing. It’s hurting my ears’

There were stifles of laughter all around me. He just said out loud what we all were thinking.

Church seems to be the breeding ground for his comments, for on Ash Wednesday a few years ago, we arrived at church only to be greeted by standing room only. Adam belts out:

That one in the purple (our Pastor) needs to hurry up and ‘slap’ the ashes on everyone’s head so we can get out of here. Everyone around us started to chuckle. Once again, he just said  what everyone was thinking.

I can be embarrassed all I want. He will never be. I tell him over and over that he can hurt people’s feelings by being so honest. He tells me that ‘being honest is a rule’. Well, yes….. Oh, my goodness! Sticking hot pokers in my eyes would be a better alternative than continuing to engage in this conversation!

The other day, as I watched him bounce out of musical practice, singing some made up song about ‘tiggy jacks’ ‘zon, zondrids’ ‘plow holders’ and (of course) mom’s ‘Boincy Bouncy Butt’, I realized that he was oblivious toward his actions. Any other middle schooler would never even think about dancing out of school like he did. In fact, his brother Alex was walking a good 50 feet behind him. Adam calls it like he sees it, does whatever he wants, and is completely happy that way. Fortunately, or unfortunately, he certainly makes his presence known wherever he goes. This got me to thinking…..wouldn’t it be nice to say whatever was on my mind with no remorse, and break out into song and dance whenever the urge struck? I’m sure that I would worry less, and my stress would melt away!

Fast forward to this morning. Adam rarely pays attention to the television. His only interests in the screen are Minions, and YouTube videos of Metra Trains and Helicopters. But for whatever reason, he was interested in the footage of yesterday’s terrorist attacks in Brussels. As he studied the faces of the survivors, and the family members talking and crying, he asked me:

What are those people feeling? (It truly baffled me that he had to ask. He tells me often that he only likes to be happy.)

They are sad.

Why?

Because a lot of people where hurt and killed yesterday.

Why?

Because there are many people in the world that don’t like each other.

All of those people just need to use their words and talk. (Once again, he’s calling it like he sees it.)

He picked up his backpack and skipped out the door on his way to the bus, singing his made up song again….showing very little understanding of the sadness,  if any.

As Adam’s teachers, therapists, and his social workers continue to try to teach him the meaning of his feelings. I sometimes truly wonder if this is even possible.

 

 

 

 

 

Dr. Martin Luther King Jr. Loved Metra Trains

Buffalo Grove Train Station

Dr. Martin Luther King Jr.’s birthday. A day off of school, work, a day to remember a great man, a great leader who was taken from us way too soon. I always wonder what he truly would have achieved if he had not died. We have spent the last week learning about Dr. King in the second grade classroom in which I work. I know that my own kids have continued to discuss his numerous contributions to the Civil Rights Movement. Adam has had this day circled on his wall calendar for weeks. He has been waiting anxiously for, I’m sure what seems like forever in his mind.

You see, although Adam loves to learn about events and dates in history, and he has recited many facts about Dr. King,  January 18, 2016 was his next day off of school. His next opportunity to make another pilgrimage to yet another Chicago Metra station. As we are getting in the car, Adam starts going through his scripted dialogue, which I have heard all weekend.

Mom ‘spaced out’ and didn’t take Adam to the Buffalo Grove train station this weekend so we are now going on Monday, January 18, 2016. 

Ok, so I need to set a few things straight:

First of all, I didn’t ‘space out’. I have just learned that I need to strategically plan these visits, for, if Adam had his way, visiting Metra Stations and riding the Metra train is ALL  I would do in my free time.

In addition, visiting a particular Metra station once with Adam is never enough. There is always something new to discover, something new to take in. A new detail to digest. Autism doesn’t allow the Metra train or it’s station to get old.

We begin to drive and  Adam says to me:

Martin Luther King loved Metra trains

Huh. How do you know that he loved Metra trains buddy?

Because Martin Luther King starts with an ‘M’ and Metra starts with an ‘M’. They match! That’s why Adam knows that ‘Martin’ (now they’re on a first name basis) loved Metra trains.

I started to speak, but no words exited. My mouth slowly closed and I decided that it was just not worth it. For anything that I would potentially say would be rebutted with one of his classic responses such as ‘mom’s talking was hurting his ears’, or something of the like. It just wasn’t worth it. In his mind, his reasoning made sense, and he’s already moved on. WAY on. We continue to drive in silence. Me, deep in thought, and Adam with his eyes as wide as saucers and an enormous grin on his face.  We have arrived at the train station! One that we have never visited, however, he has studied it’s every minute detail in pictures that he has Googled. He immediately rips off his seat belt before I even get a chance to fully park. He starts stimming; drumming his fingers together in front of his face rapidly, as he often does when he is excited. Once again, I’ve lost him to the Metra. He is not in his right mind.

I quickly grab my hat and gloves,  glance at my car thermometer and note that it reads -3 F. We won’t be out here long…I pray that we are not out here long. Adam’s world stops when it comes to anything to do with the Metra. As I am sprinting to keep up with him, I note that his head moved ever so slightly to the left and right to check for cars. Wha hooo!! He’s finally remembering to check for cars! Or maybe I was just hoping.

After about 20 poses of Adam standing outside the station and 1oo more shots of the various angles of just the station alone, Adam thankfully decides that it really is insanely cold and he makes a run for the car. He once again barely turns his head to look for cars, but he did look a little, right?

He couldn’t get his seat belt on fast enough and immediately starts swiping through his new pictures on his iPad at warp speed. I notice his eyeballs jumping back and forth, up and down, absorbing every detail of those pictures like a sponge. Soon he will be reciting random facts about the number of bricks, how many cracks in the mortar, and the number of shingles this train station contains. I sigh, and smile ever so slightly.

You see, although Adam’s obsession with the Metra train, the Metra stations and the maps of the Metra line can be a bit overwhelming to me at times, it truthfully isn’t. It’s really such a simple thing. All he really ever wants to do on a day off of school is take a leisurely drive to a Metra station, take a few pictures, admire, in his mind, it’s remarkable beauty, and go home.  Going to a Metra station doesn’t cost me a dime,  except maybe a little bit of gas. I get to spend time with my son in the car, listening to his theory and reasoning of why Dr. Martin Luther King loved Metra trains. But most importantly, I get to witness the pure joy on his face, as if I took him to Disney World.

 

 

 

 

 

 

 

 

 

 

 

A Letter to My Son’s…and My Daughter’s IEP

Hi There! It’s me again…

It’s been a while since I’ve actually opened both of you. Maybe it’s because I have you memorized like the back of my hand. Or maybe, it’s because I truthfully get a bit sick (both physically and mentally) of you sometimes… You and I both know that there are some reasons for that.

Regardless, once again it’s January, and in a few days, we will be meeting along with several others. They call us a team. Your drafts have already been sent home for my review, my notes and questions have been made.

In a few days a copy of your 25+ pages will be passed out to each member of the team. We will start by introducing ourselves; and then the real fun begins. Over the course of two hours (sometimes longer) we will discuss my parent concerns and then your present levels of functioning. We will discuss your goal data, and determine whether the goals written on your precious pages have been met. If your goals haven’t been met, we will discuss the possible causes, brainstorm solutions and reword the goal until the verbiage is so intricately precise. All in hope of giving my son and daughter the best chance possible to make progress in order to achieve academic success. We will then discuss and determine each of their classroom accommodations:

Will a 4×6 or a 3×5 index card be allowed to be brought to class to remember math and science formulas? Yes, your words are that specific.

You state that you do not allow double sided worksheets/articles to be given to my son or daughter for flipping back and forth is too distracting.

You make it clear that study guides are to be given no less than 4 days in advance.

You state that tests are to be read to my children, there are to be no true /false questions and they are to get the double allotment of time to take assessments for, their processing disorders make all of the above challenging.

I won’t bore you with the many  other speech, OT and social work accommodations that you hold. You know exactly what it says.

We both know that an enormous amount of time is dedicated to combing through your words, for, as nit-picky as it is, these very important details help to ensure that my children achieve academic success. A few more loose ends are tied up. And if everything goes well, and everyone is in agreement, signatures are obtained and your new pages are ready to be followed….that’s in a perfect world.

Now don’t get me wrong, most of the team takes you back and begins to painstakingly implement your every word immediately. But there’s seems to  always be  that one team member. The one who thinks that they are above you. The one who thinks that it isn’t their job, but someone else’s, to read you or even acknowledge you. The one who thinks part, if not all of you is stupid. The one who thinks that they don’t have time for you. The one who takes your precious pages and tosses you aside, throws you in a drawer. It’s funny how that one team member is always the first to roll their eyes at my children, get frustrated  when they aren’t understanding or performing. And they are always the first to call and tell me. It has to be an awful feeling to be abandoned like that after the entire team worked so hard to create your pages. If only your words were read. If only you were heard.

Honestly,  as much as I truly love and appreciate you, I really wish that you were not a such an enormous part of my life. Oh how I wish that I could send my children to school and go about my day without you being on my mind, every hour, heck, every minute for that matter. How I wish that I did not have to use up precious vacation time to meet with the team or field phone calls and emails.. I mean, a beach and an umbrella drink sounds so much better than a board room; and if given the choice, I would think that you would much rather still be a tree.

And then there’s my reputation that you have indirectly helped me to achieve. I know that I am “That Mom”. I know that I have been called a b*itch. I also have heard through the grapevine that I am a “piece of work”. That’s been my favorite phrase to date. But no worries, as the old ‘sticks and stones’ adage goes…..names will not hurt me. You and I both know that my children are entitled by law, to receive a free and appropriate education; so therefore, you are the law.  you are to be followed. I guess that together, we will have to continue to be that reminder. If only we were all a part of the team.

So, in a few days, the team will be gathering to pour over your precious pages. We will review you, discuss you,  dissect you, and sign you. I just sincerely hope that this year, everyone spends time with you and really gets to know you. Because after being a part of an IEP team for 13 years, I know that you really truly do have a lot to say. You really do know how to make the lives of all those involved a WHOLE lot easier.  You just need to be heard.

With Love,

Mom

 

 

“I’m Sure That You Wish That Your Son Didn’t Have Autism, Right?”

Not too long ago, I picked Adam up from his beloved weekly art class. It was a pretty typical pick-up. I found Adam, in his very methodical, autism manner, returning his brushes, one by one in order of size to the container. He returned his blue apron to the same hook and rearranged the rest of the aprons in rainbow color order. He then returned to his easel and carefully removed his art board from the clips, first the right side, and then the left side, and returned it to his art case. He finally adjusted his signature black ‘engineer’ hat, then put on his jacket. I have learned, after many, many years…just to be patient and wait. While he was going through his routine, another mom, who was walking out the door with her daughter, stops, takes a step back and says.

“Oh, Adam is your son! His artwork is beautiful. I would have never known that he had Autism. I’ll be that you sometimes wish that he didn’t, right?

Now, being a mom of a child with Autism for almost 12 years, I am accustomed to the looks, comments, suggestions, and the input of what people have “heard” and what people have “read”. I am used to smiling politely when people make “suggestions” as to what I should try, how I should “approach”.  As an autism mom, you learn to develop a really thick skin and learn to let a whole lot of things roll off your back. However, I have to say, that this particular encounter, with this particular mom, really stopped me in my tracks. And it really surprised me, for I am typically, not ever, at a loss for words. But this time, I was. All I could do was look at her, raise my eyebrows a bit, and walk out the door; and, in retrospect, I hope that my lack of ability to speak at that moment was a bit more powerful than any word that ever could have exited my mouth.

That encounter happened almost two months ago. I immediately came home, opened my blog site and started pounding on the keyboard of my laptop. The fact is, anything and everything that I was writing was just turning into a rant. I really didn’t feel that much better. So there my words sat….in my draft file….until now.

I read a blog post on Facebook last night entitled  I Know What Causes Autism . It is a hilarious account of all of the ridiculous explanations of what ’causes’ Autism. It really hit me in the gut, for as much as I am curious as to what may have caused Adam’s autism, in the end, does it really matter? Do I wonder sometimes, why Adam is different than my two older, typical children? Of course. Do I sometimes wish that my son did not have autism? Sure, sometimes. Would not having autism mean that I would not have to:

  • make sure that every restaurant that we go to have chicken tenders and fries on the menu
  • run around town, sometimes to four or five grocery stores in frantic search of Blueberry Pomegranate Gatorade..the only “acceptable’ vessel to wash down his medicines?
  • pack up all of his favorite foods when we visit friends homes or go on a vacation?
  • hurl myself like Superwoman, shielding Adam from even a glimpse of the ‘evil’ strawberry?
  • worry that he is being treated fairly by his peers?

When you really get down to it, these ‘inconveniences’ are pretty typical, pretty minor and pretty insignificant. Most of you, with typical children can probably relate.

But, not having autism would mean that I would not:

  • have a tour guide who knows every stop in every order of every Chicago Metra train line, for I will never get lost
  • have all of the beautiful artwork that I have decorating the walls of my home
  •  have a ‘guaranteed’ clean bedroom and an organized (by color…a little excessive) closet
  •  know the exact day of a week that a photograph was taken based on the color shirt that he was wearing
  •  know the exact date, month and year a significant (and sometimes insignificant; for instance, his sister not turning in homework) event took place
  • have two incredibly caring, tolerant, patient typical children, because their younger brother’s autism is the only thing they know
  • have learned to appreciate ‘baby steps’ in order to keep the big picture in perspective.
  • have the closeness that we have as a family
  • have learned the true meaning of patience and acceptance

The list could go on and on……

But, finally, and most importantly, if Adam did not have autism, I would not be constantly talking at infinite length about his absolute favorite topic…. my butt. As odd as this is, it’s also a bit endearing. I’ll bet there aren’t too many moms out there whose sons unconditionally admire their butt.

So,  “Mrs. Art Mom”,  to answer your (I’m sorry, ignornant – yes, a part of me feels better) question, no, I would not trade my son, for the person that he was born to be. Not for a million, trillion years.

 

Never Stop. Never Give Up. ….But if Something Gets in Your Way, Just Give It an ‘Ass Kick’!

It’s that time of year again!  Animated conversations with the ones you love that go long into the wee hours of the morning. Laughing, and A LOT of crying. Reflecting on times of long ago; both good and bad, and excitedly talking about the here and now and what could be and what I know, in my gut, will be. An then there’s the wine…my tried and true friend. The one that gets me through, no matter what. No…..I’m not talking about the holidays…… I’m referring to preparing for Adam’s upcoming IEP.

For those of you who are unfamiliar with the term IEP, I am referring to an Individualized Education Plan. The 20-30 page ‘labor of love’ that is meticulously devised over many hours, days, and months for those of us who have kiddos who fall into one of the 13 categories of disabilities. I am lucky enough to have not one, but two children with IEP’s.  My daughter: Specific Learning Disability-Dyslexia; and my youngest son, Adam, who falls into 3 of the 13 categories of disabilities;  Autism, Speech and Language Disorder and Other Health Impairment – a seizure disorder. Are you confused? Exhausted? Shaking your head? Probably.Trust  me….I get it. in fact, this is how I feel most of the time. And I know that there are many, many, MANY parents out there, who just like me,  proudly wear the same badge on their chest that I do.   We are a very unique club.

Recently, my nights have been spent wide awake, obsessing and worrying, for Adam is up for his three year re-evaluation with all of, as I like to call them, the “ists” Over the next two months his occupational therapist, speech therapist, behavior therapist, school psychologist and the school social worker will evaluate him in their own areas of expertise to determine his growth. In the meantime, the “ists” have also assigned my husband and I our own ‘homework’; numerous evaluations which dissect our own personal points of view of our son; his behavior, attention, development, independent skills, early years, health history, current medications, etc. My hand is literally cramped from drawing over 800 tiny circles around answers to the questions and my eyes are literally crossed from the fine print that I have spent the past two weeks reading. As much as I know how important this information is, and how necessary it is to gather the most accurate information of my child, I really am so over answering these questions for I am now going on my 13th year of ‘doing’ IEP’s. By the time that I am done being cross-examined by mounds of questionnaires,  I truly start to wonder…”did this really happen or did I dream that’? I mean, on Adam’s really good days, “almost always” will apply. On the crappy days, “never or almost never” hits the nail on the head and then their are the days in between that  “sometimes” will apply. To an autism parent, each one of these days has it’s individual and unique meaning. They cannot just be lumped into 800 questions.  I mean, how do you really objectively fill out these forms?

So as much as I have been losing sleep, dreading these forms, fearing these upcoming evaluations of my son, and going through all of the different scenarios in my head of what these forms and these upcoming evaluations will tell us,   I was reminded this week of how far he has come since our last go-around of forms and tests in 3rd grade. I am often amazed and truly grateful that these “little” reminders present themselves when I need them most.

The first came earlier this week when his language arts teacher sent me an email asking me to be sure to ask Adam to show me the project that they had worked on in class today. She said that he was really excited to show me a story that he wrote and narrated. I couldn’t wait to get home from work, confiscate his iPad and watch.

Just three short years ago, Adam was not speaking complete sentences. He honestly could not even write more than 2 to 3 words in a sentence. Heck, on some days, we were even lucky if he could write a sentence. And then there was the time not too long ago,  that his neurologist considered him to be non-verbal.  He truly has come a long way.

My second reminder came on Friday evening when Adam tested for his green belt at his Tae Kwon Do school. He has been practicing the green belt curriculum, his forms, Korean terms and his pretty difficult board break, diligently, for the past two months. I grew more and more confident that he was going to pass his belt test with flying colors as I watched him warm up and practice his forms as loudly as he could. As my husband and I were chuckling because he really was EXTREMELY loud, his Master presented him with the ‘Exemplary Student’ award for “never stopping and never giving up”. Adam proudly accepted his trophy bowed to us and then happily continued right on with running though his various kicks, including my two personal favorites: the “frozen up kick” (front snap kick) and his “ass kick” (axe kick). 90 minutes later, Adam passed his belt testing and earned his green belt:

He even tackled that challenging board break!

My third reminder came yesterday. All three of my children participate in our school district’s phenomenal choir program. Once a year, all 8 choirs from all 8 schools in our district come together for a truly amazing day of choir workshops. The last hour is filled with beautiful pieces of music that our extraordinary music teachers have painstakingly worked on with our children over the first 9 weeks of school. It is a truly moving experience to see over 700 choir students from the elementary, middle schools and high school perform these pieces for family and friends in the school field house. Adam couldn’t wait for this day to come. He proudly dove into dress clothes and tie and stood in the front row singing very loudly and proudly…..


…and to think…just 3 years ago, we were lucky if he could tolerate one hour as an audience member. He truly has come a long way.

So tomorrow, I will be sending my 800 question manifesto back to the “ists”. From this and his upcoming evaluations,  a new plan will be devised and then presented when we convene at his next yearly IEP meeting in January. In the meantime, I have to keep reminding myself to keep putting one foot in front of the other, and remember an extremely valuable lesson in which my son taught me this past week…..To ‘never stop and to never give up’.

Raspberry Iced Tea, an “Epic” Pillow Fight, Ke$ha and a Box of Tampons….

It’s been an exciting weekend. My middle son, Alex’s baseball team won their Fall Ball league championship. The team has only played together for 5 weeks and they ended their season undefeated. As fun as it was watching the team pose with their trophy in their first place sweatshirts, and as proud as I am of my son and his team, I couldn’t help but think that this was only the second or third time in the past five years of playing travel baseball we have been able to take this picture. Maybe that’s why this picture was all the more special. No sooner did we finish this game, our team was back on the road to our final tournament of the fall ball season. I know…. We’re one of those  families.

Sports are a big part of our lives. My daughter, Lacey, danced competitively for many years. She now dances on her high school dance team and is a member of her high school track team. Alex runs cross country, plays basketball and lives and breathes baseball. Adam plays baseball, soccer and is passionate about Tae Kwon Do. Our family vacations are planned around tournaments and competitions. In fact, sometimes our family vacations are incorporated into their sport schedules. I, myself, grew up playing travel soccer. I got to play in some pretty awesome places.  Competitive sports have always been a way of life for me and now I get to live the world of competitive sports from a different perspective… as a parent.

I love to watch my kids participate in sports.  I know first hand, there is so much to be learned from playing sports. And there is so much more to competition than the wins and losses.  There is a difference between being a winner and winning.  A winner works hard, keeps a positive mind, picks up a teammate who is struggling, works hard to better themselves and their teammates, and they never EVER think that they have mastered their skill. A winner leads by example, makes no excuses, and never EVER gives up. A winner develops close relationships with their teammates. But most importantly, a winner has FUN.  These were qualities that were pounded into my head by my coaches while growing up. I am more often than not, reminded of how many of us misunderstand the difference between a winner and winning. The bottom line is….how many wins do you truly remember anyway?  Thus, the reason I had to snap this picture……

Unfortunately, so many of us get caught up in the ugliness of sports….winning. Everyone knows THAT parent. THAT parent  is always yelling at their own kid to run faster, swing harder, dance cleaner. And after they are done criticizing their own kid, they start targeting the other kids on the team. They just can’t help themselves. Winning is just that important to them. They suck the life out of their own kids, not to mention, the rest of team, the team parents, and the coaches. I’ve experienced THAT parent. They truly make me want to stick hot pokers in my eyes, for I’m convinced that the hot pokers have to feel better than enduring hours on a sidelines with THAT parent. In addition, look at the kid of THAT parent… Do they ever look happy? Think about it….

I look back on my own days of playing competitive soccer. My second home was a soccer field. I vaguely remember the wins. I vaguely remember the losses, for that matter. What I do remember is the fierce friendships that I formed with my teammates. Most of whom I still talk to 30 years later.  I remember traveling to overnight tournaments, staying in hotels and the crazy pool parties. I remember sitting on the floor in the hall near our room listening to Prince, The Cure, Duran Duran, the Pretty in Pink soundtrack, and whatever other music was current and popular at that time; over and over on our Walkmans, until we knew every word. I also pride myself on my ability to style every type of braid known to long hair for this is how we passed time in between games…by the way, teammates…my daughter is truly grateful to you! I remember the team lunches, the team dinners. But, I think my most favorite of all of my soccer memories is a long drive back from a tournament in Cincinatti, way before there were televisions is cars. All of the books and magazines that we brought with us were read and tossed aside. We were beyond bored out of our minds, when, a box of tampons caught one of my teammate’s eye. This little blue box of individually wrapped cotton, suddenly came to life. Our tampon family was born, complete with faces and names, all hanging by their strings and happily flapping outside the window all the way back to Chicago! I remember the endless belly laughing until our sides were ready to explode. Obviously a memory that I will never forget.

I am currently sitting on the sidelines of our third game of Alex’s team’s final baseball tournament of the fall 2015 season. We’ve won two games and as of right now, are currently winning our third. I don’t know what the outcome will be. If we win, I’ll be standing there with my camera, because otherwise,  I’m pretty sure this win will be long (or shortly) forgotten. I will happily remember, however, the boys that I took to lunch today in between games, chatting about how great the raspberry iced was in the dining room during their Cooperstown trip this past summer and reminiscing about the “epic ” pillow fight that broke out among the teams on the last night that they stayed in the bunk house; all while Ke$ha’s Tik Tok was blaring on my car radio and the boys were singing at the top of their lungs all the way back to the field.

You’re Out of Words in Your “Talk Jar”

A few summers ago, Adam and I were sitting on the back patio, on a beautiful evening, having dinner. It had been one of those days; constantly on the run, driving my kids to one million places. Dinner was the first chance that I had to catch up with Adam and to find out how his day was at camp. I must have been chatting away, peppering him with questions. I’m not even sure that he was answering me. I will fully admit; I hate silence. After about the 6th question, Adam held his hand up and said “Whoa! Mom! You’re out of words in your talk jar”.

I remember his comment stopping me dead in my tracks; my jaw dropped. I also remember shaking my head and chuckling, for he truly has a knack for saying extremely quirky things that initially don’t make sense. However, after thinking about it, they actually make a WHOLE lot of sense. He just told me in his own quirky way to “shut up”!   I often comment how there are some true advantages to autism directness. I love that these kids say what they mean.  In their minds, the sky is blue, the grass is green, and every other aspect of their life is either black or white.  After that night on the back patio, I silently vowed that I was going to keep this comment in my back pocket for, for in my opinion, it was brilliant. I knew that someday, I would find this phrase to be quite useful…… And for me,  “someday” came this past week.

For the past five days, I wasted many hours of my life , trying to convince an individual that Adam could participate in an activity independently. Unfortunately, this person went to all ends of the earth to wear me down beyond belief. In the end, I decided that it was not worth my time to try and convince this person otherwise. In my opinion, Adam was being discriminated against, not to mention my feelings that I was being harassed and judged as a parent. There are just some people who unfortunately are too paralyzed by their own ignorance, fear, and assumptions,  not only about Autism, but life in general. Over time, I have learned, in these situations, that I will not get anywhere with their narrow mindedness. Thus, my new favorite mantra:

not my circus

As much as I continued to remind myself about the circus and monkeys, I admit that my level of frustration continued to multiply. I continued to obsess and my anger continued to grow.  I couldn’t fight back the tears. I had many lengthy conversations with this person in my head. I imagined all of the inappropriate things that I would like to say. I imagined my best upward cut clocking them right in the chin. I imagined my best roundhouse kick firing right at their gut. I even (immaturely) imagined tripping them flat on their face and yelling “ha, ha….ha, ha, ha!”. Or my most favorite, just flat out tackling and choking them. As I am reveling in my mental images, my emotions then turned to sheer panic, and self doubt; questioning myself whether  Adam will be able to, one day, go to college, be able to live independently, and find a job. This made me even more angry. I was so mad that this person, and their narrow views, caused me to doubt all of the things that we have fought so hard to put into place for our son. To doubt all of his many accomplishments over his short life. So, to this person, I would like to say…..

 “You’re out of words in your talk jar”!

It was only after a night on the sofa eating ice cream and watching mindless reruns of anything I could find, that I realized that I had to take a step back and remember all of the good that surrounds Adam and our family. All of the things that life has taught us about raising a child with Autism. I began to make a mental list of all of the people that I would like to thank, and I suddenly realized that this list of positives far outweighs the negatives. And to each of these people, I would like to say:

  • Thank you to all of Adam’s wonderful doctors who always speak directly to him and ask him your questions directly and concisely. In addition, thank you for your endless patience in answering all of my many (and sometimes ridiculous) questions.
  • Thank you to the wonderful directors of the school and community theater programs who always find the perfect role for Adam in your plays and musicals.
  • Thank you to Adam’s wonderful art teachers at our community art school who “shoo’ me away at the door and allow Adam to independently express himself in his most favorite way for two hours every Wednesday.
  • Thank you to Adam’s Tae Kwon Do Instructor who tells me that “he will see me in an hour” while he consistently holds Adam to the highest standard just like the rest of his class; because he KNOWS Adam can do it.
  • Thank you to Adam’s teachers who roll up their sleeves, dive in with your “can do attitude”, and hold my son to the same standard as all of the other students in his class, because you also KNOW he can do it.
  • Thank you to Adam’s soccer and baseball coaches who work so hard and dedicate so much time to ensure that he can play the two sports that he loves. 
  • Thank you to all of our wonderful friends who never, for a second, treat Adam differently.

As I continue to reflect on my past week, I realize that among all of the aggravation that I experienced, I am truly grateful for the reminder that there is a lot of good to be found around me. My suit of armor as a special needs parent is even stronger. And on that note, I would like to say:

HEY INTOLERANCE, ASSUMPTION, and IGNORANCE!!!

You’re Out of Words in Your Talk Jar!!!