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To Comprehend or Not To Comprehend….the Ongoing Question

Last week, Adam re-entered private speech therapy, for probably the 5th time his short life. This time, however, it was a bit tougher for me to explain to him, for unlike the other 4 times, he started to pepper me with 20 questions as to why he needed to go back to ‘speech class’.  As he put it:

“Adam is ‘conversating’ just fine. Mom can know why Adam is going back to speech class”

….And, that, my friends, is EXACTLY why, my son is once again, re-entering therapy.

The fact of the matter is, Adam doesn’t at all see anything different regarding the way his speech has formed. In his mind, he gets his point across. He uses vocabulary that is familiar to him; and his family, friends, teachers and coaches help fill in the rest of the blanks when the ‘conversating’ gets a bit sketchy. He confuses pronouns; calling boys ‘shes’, girls ‘hes’; he calls himself ‘you’ instead of ‘me’ and  from time to time, still refers to himself in the third person (thanks a lot Elmo). I truthfully sometimes feel like he’s Abbott and I’m Costello in the sketch “Who’s on First”.

So aside from trying to sort out Adam’s use of language, his speech therapist has been given the task of helping Adam to improve his reading comprehension by helping him to really understand the meaning of the words he is using. We are hoping that if he can learn to make a connection to the words that he is reading, he will improve his ability to recall what he has read and what he has heard.

For years, I have struggled with Adam’s ability to comprehend. When his teachers said ‘no’ to comprehension,  I said  ‘yes’ and when his teachers said ‘yes’, I said ‘no’. It’s like watching a tennis match at Wimbledon.  When his reading and comprehension levels are tested at school, although he can fluently read the words of anything that he is given, he consistently tests at a beginning 2nd grade level at best. He looks like absolute crap on paper. We are continually working on closing a gap that seems to just be getting wider.

A few weekends ago, my daughter, Lacey performed in her high school dance company’s annual dance show. Adam, along with several of his friends, who are all a part of a wonderful  athletic program for special needs students, in which our school district sponsors, also performed in the show. I watched Adam show off his best dance moves to Taylor Swift’s ‘Shake it Off’, quickly exit the stage, and settle into a seat, front and center, in the very first row of the auditorium all by himself. The M.C.’s for the evening, who are basically there to kill a little time while the dance company makes costume changes,  entered the stage. To the audience, they ask the question;

“Who has been the biggest influence in your life?”

Adam’s hand shot like an arrow into the air. I could literally hears gasps in the auditorium, for, that evening,several friends were in the audience who know Adam very well. As one of the M.C.’s started walking toward him, I immediately sank into my seat; my hands going straight to my head and I started to pray as hard and as fast as I could…

Please don’t say my mom’s butt, please don’t say my mom’s butt. Please say ANYTHING but mom’s butt!!!!

As Adam started to speak, my eyes shot  to the front row.  I couldn’t believe my ears:

My mom, dad, Alex, Lacey, Annie, Bentley, and Lizzie

….the cat, whom he hates, even made the list.

I was stunned! He answered the question with the appropriate answer! I still can hear the collective sigh of relief throughout the auditorium.

He is comprehending….

Fast forward to earlier this week; I was helping Adam study for his health quiz:

Me: Liver

Adam: Helps to metabolize carbohydrates

Me: Pancreas

Adam: Makes insulin

Me: Esophagus

Adam: Carries food from mouth to stomach

He’s totally comprehending

Me: Uterus

Adam: Holds a growing baby until birth

Me: Ovaries (can this be over soon?)

Adam: Produce hormones and release eggs

Of course he is comprehending

Me: (cringing) Gonads

Adam: Testes

He then stops, squints at my waist and says:

Adam wants to see mom’s gonads

Please. Shoot. Me. Now….he’s not comprehending.

On second thought, I’m going to let his speech therapist continue to sort this out!

 

 

 

 

 

 

 

 

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.