Category Archives: Autism

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.

 

 

 

 

 

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

 

 

Meanwhile, My Boincy, Bouncy Butt Will Be Sitting in the ‘Wait and See’ Chair

Posted in Autism, motherhood by

It’s Thanksgiving day….Hands down, my most favorite holiday filled with food, family, friends, and football. A rockin’ dance party has even been know to erupt at our gatherings. It’s a time to reflect. A time to slow down. A time to be grateful….

Earlier this month, I found myself sitting in a new eye doctor office with Adam and Lacey due to a change in insurance.  I hate switching doctors of any kind; especially with these two children. Between the mounds of new patient paperwork, transferring an obscene amount of records, and having to explain their tedious heath histories; I’m shocked that I have made it this far, without an ulcer.

Given that our new eye doctor had never met Adam before, I asked her if she would like for me to come in or if she would like to wait and see… Adam immediately chimes in and says:

“Mom’s boincy bouncy butt needs to sit in the ‘wait and see’ chair”

The doctor looked at me and all I could muster up was…. Long story….

This was only after our new young doctor came  out just minutes earlier after examining Lacey with a very alarmed look on her face. She explained to me that Lacey’s vision has gotten better over the past year and that she wanted to dilate her eyes for she is fearing it could be a sign of diabetes. I was immediately left to sink back down into my ‘wait and see chair’. I began to imagine my daughter’s life with multiple glucose level checks, calloused finger tips, and daily insulin injections. As I told myself that we would adjust to this new life, just like we have adjusted to so many other things, the eye doctor walked out literally a minute later trying to stifle a giggle…… Lacey had two pair of contacts in each of her eyes….Never mind the fact that my daughter had just driven Adam and I to the office….

The Ketchams are known to make such memorable first impressions…. It’s just another day in my life with my ‘bookends’.

A few weeks later, I continue to sit here, still a bit speechless. Between the two of them, I have been in this situation often.  As their mother,  I have had to sit in the “wait and see chair” more times than I can remember…quite frankly, more times that I have ever wanted to. There is a reason that we jokingly call Lacey and Adam the “bookends”. They are the truly the alpha and the omega; the beginning and most definitely the end to our family. There is a reason that I have a crevice in the middle of my forehead that Botox would never even begin to fix. Lacey and Adam are 4 years, 9 days and 8 hours apart to the minute. And they are so alike in so many ways.

I look back on Lacey’s 15 years and Adam’s  11 years and I wonder sometimes how I haven’t run for the hills or I have not had a nervous breakdown. I look back at their unbelievably picky and ritualistic eating habits. I have cooked more mac and cheese, chicken tenders, butter noodles than I ever want to admit. They both swear that Kraft spiral mac and cheese tastes different than the traditional Kraft mac and cheese and the traditional Kraft mac and cheese tastes different from any of the character Kraft mac and cheese. Adam has eaten bags of frozen green peas in one sitting….for at least the past 5 years.  And then there’s Lacey who is convinced that she hates all fruits and vegetables….which is humorous, for unless I rope her and tie her down, I’m fairly certain that  she has never really tried a fruit or vegetable.  The doctors just keep telling me to be patient. It will eventually change. And I continue to sit with my boincy bouncy butt in the ‘wait and see chair’.

And then there’s school. The subject that is the topic of daily conversations in our house.  I have officially spent months, it not years of my life meeting with teachers, sitting in IEP meetings, writing and rewriting their IEP goals and sitting back ‘waiting and seeing’ if this new strategy, this new approach, this new idea will help them to gain success in their academic settings. Sometimes it works, but there have been countless times that we have to go back to the ‘drawing board’, try a new approach, and then return to the ‘wait and see’ chair. It’s a never ending process. Meanwhile, my boincy bouncy butt continues to sit in that wait and see chair.

As I look back over these years, I realize that the amount of times that my boincy bouncy butt has sat in the ‘wait and see chair’ with the ‘bookends’ has caused so much worry; so much angst, and many, many sleepless nights. It has it has also taught me so much more. And for that….I am truly grateful.

For instance

 I waited for over the first  3 years of Lacey’s life for her to speak more than 3 words at a time. After raising my concerns to her pediatrician, we were finally referred to speech therapy. After weeks of evaluations, she began twice a week therapy. Her speech therapists worked tirelessly with her to catch her up to her peers. I learned so much about patience while my butt was in that ‘wait and see’ chair. For that I am grateful

or

In the 5 years that I chased Adam’s autism diagnosis. We met with an insane amount of pediatricians, developmental pediatricians, allergists, geneticists, psychologists, and psychiatrists, all of who negated what I knew was autism. Finally, a neurologist put all of his pieces together and officially gave Adam a diagnosis. I learned so much about persistence while my butt was in that ‘wait and see’ chair. For that, I am grateful.

then

There was the neurologist whom I was referred to at a renown hospital in Chicago. She was ‘convinced’ that Adam did not have a seizure. We had visited the ER just 3 days earlier after we called the paramedics who observed  symptoms which were suspicious of a seizure. Because Adam had thrown up, in the process, I was told that the ‘stomach flu and dehydration can present some strange symptoms’ and  she ‘didn’t know what else to tell me’. Two days later, Adam had a 40 minute seizure that landed him in the hospital on a ventilator for 5 days. I learned so much about trusting my gut while my butt was in that ‘wait and see’ chair. For that, I am grateful.

and

Year after year, I raised concerns that Lacey possibly had a learning disability, and year after year, I was told by her school team that it was ‘too soon to tell’ and that her grades were ‘too good’ to label her with a learning disability. Somehow, 6 years went by and suddenly she left 8th grade reading at barely a 5th grade reading level.  After taking her to an educational psychologist, we discovered that she has dyslexia. She has spent the last 18 months working after school with her tutors, killing herself to catch up. All the while, never complaining. I have learned so much about resilience while my butt has been in that ‘wait and see’ chair. For that, I am grateful.

So today, as I am preparing to spend Thanksgiving day with family and friends; I am reflecting on my past year.  I of course am thankful for everyone in my life.  I am grateful for the things we have, our jobs, and our home. But most of all, I am grateful for the journey that my ‘Bookends’ continue to navigate. A journey which has taught me patience, persistence, trusting my gut, and resilience. A journey that I am excited to continue as my boincy, bouncy butt sits in the ‘wait and see’ chair.

 

 

 

 

 

 

Just Push Her in a Bunch of Butter and Lock Her in the Closet

Posted in Autism, Family, humor by

 

It’s the last weekend before dance classes, baseball, soccer, and school activities return with a vengeance. 2015 has gone by so fast. Lacey is 6 months in to having her driver’s permit and as she was driving us to a soccer game and two baseball games today, I was mentally remarking how well she is doing behind the wheel and how she gains more and more confidence each time we get in the car. Meanwhile, back in the peanut gallery, Adam is giggling hysterically in the backseat and going through one of his favorite scripted dialogues about Lacey and her driving:

Adam: When Lacey get’s her driver’s license, she will take me to the Metra station, to Dunkin Donuts on Saturdays, take me to art class and Tae Kwon Do, and to Culver’s all of the time. But if Lacey crashes mom’s car or the driver’s ed car, what will happen?

Me: I don’t know buddy, you tell me.

Adam: If Lacey crashes mom’s car or the driver’s ed car, she’s going to get ‘all flunked up’ 

He then continues to laugh hysterically, which, I have to admit, every time I hear this, I chuckle to myself, for he has no idea that he is so spot on in so many ways. Lacey is always such a good sport about this image that he has in his head and will usually throw in a chuckle as affirmation.

At one time or another, we have all been on Adam’s “list”; but my poor daughter has been on this list for quite a long time. He has taken an extremely strong interest in her demise. Adam continually imagines Lacey flunking all her classes and not being able to go to college, locking her in closets, moving her into other rooms in our house, or better yet, other people’s homes. Yes, he has relished in his sister’s failures for what seems like and eternity. In his autism directness, he even flat out tells her that he only likes his brother. And while we continually correct Adam and remind him that he can’t hurt people’s feelings by being so direct, It just seems to repel off his head. And Lacey continually amazes me as to how she always seems to take it all in stride. She may, once and a while, throw in an eyeball roll, but her patience is endless with Adam.

Adam LOVES puzzles. He can typically complete a 1000+ piece puzzle in about a week, with minimal help. Upon completion, he always asks me to take a picture, then immediately destroys the puzzle and moves right in to the next one. He always tries to recruit me to help him, but I’ll fully admit that I have an attention span of a gnat when it comes to tedious tasks.  I immediately take a sudden and intense interest in the laundry, the dishes, cleaning toilets with a toothbrush, organizing my sock drawer…you know, anything BUT that! One particular rainy weekend, two weeks ago, Adam was in the dining room working on his latest masterpiece. Lacey wandered in, sat down next to him,  and began to work on a section. Adam immediately says:

If Adam ( he sometimes still refers to himself in the third person) pushes Lacey back into a bunch of butter and locks her in the closet, what will mom do?

He’s obviously trying to tell her to ‘get the heck out’. As I am correcting him not being very nice, I have to admit that  I’m amused with the visual of Lacey being pushed into butter and locking her in the closet, wondering where on earth he devised this potential “punishment”. I mentally note his crazy imagination and I’m silently thankful that he at least warned me that he is contemplating a retaliation. Lacey gets up and calmly says:

“Ok, Adam. Let me know if you change your mind and want help.”  

Over the summer, I spent a full week with just the two of them, while my husband and middle son were in Cooperstown, NY for a baseball tournament. I was surprisingly stunned as to how “anti-Lacey” Adam really is. Over the course of the week, he presented to me, many potential scenarios; from pushing Lacey into the pool, throwing her off the boat into the Chicago river, and finally wanting to fly HER out to Cooperstown and bring Chris and Alex back home. Lacey just continued to shake it off, commenting that someday it will change. As much as I too know this, I can’t help but to feel sorry for her.

They say that you can always pick out a sibling of a child with special needs by their endless tolerance and compassion. As long as Adam continues to express his dislike for Lacey, she will still continue to agree to make detours past the Metra train station, always be ready for a nightly tickle monster, listen to him read the same book over and over, continue to subject herself to getting her butt kicked by Adam at Mario Kart, patiently answer his endless questions, and let him monopolize her phone in order to listen to his favorite Imagine Dragons song for the one millionth time. And she will NEVER complain when Culver’s is ALWAYS the choice for a family dinner.

I know for sure that Lacey wouldn’t trade her brother for anything in the world. I also I know one other thing  for sure….when life “pushes her back into a bunch of butter, and locks her in the closet”, she will come out STRONG;  because she is the sister, of a brother, with special needs.

My Hores are Moaning

Posted in Autism, Family, humor, kids, motherhood, Parenting, teens by

Adam’s first week of middle school with  is complete. Adam navigated his first 5 days without a glitch. 5 days down, 171 to go. I’m currently sitting on the sofa, writing, and breathing a sigh of relief….oh, who am I kidding, I’m actually sitting here diving headfirst into my second glass of wine. Tomatoes/tomatoes.

Adam says his favorite classes so far are math and science…no big surprise, for both of these classes are fairly concrete and have rules to follow. Adam loves rules. New to him are FACS classes (Family and consumer science…Home Ec for those of us who are a product of the 1980’s) His first class in this rotation is sewing. His first project; a drawstring bag.  As we were waiting in line at the fabric store on Friday night, with his chosen Chicago Blackhawks material in hand, I was counting my blessings that Adam has a wonderful paraprofessional, Mrs. H.,  that helps him to navigate his schedule and his day. On the other hand, I was thinking that this poor woman does not make nearly enough money, for the video that I have playing in my head, of my son operating a sewing machine, is nothing short of a bloody massacre. This is going to be a huge learning curve for all those involved.

As we continue to wait in line, I decide check his sewing project assignment one more time from my phone.  I scroll through Canvas, the on-line assignment program that our school district uses, and I happen to notice, much to my horror, that Adam has health class is first in his PE rotation. I’m now trying to fight the overall sinking and sick feeling in my stomach. Sewing and sex ed…all in the first month of school?  I silently promise Mrs. H, that I will start saving my spare change in order to send her on a fancy vacation accompanied by lots of tropical drinks that I KNOW she will need, come winter break, in December.

Any typical middle school boy dreads sex ed in middle school. But not Adam. His  mind does not allow him to understand embarrassment. He will march right into this class with the same pragmatic approach that he does with anything else in life. I often admire how matter of fact he is about everything and am often envious of this quality…..Until he turned 11 years old. Over the past 6 months I have had many interesting conversations with my son. His inquisitive mind, minus the inhibition, in combination with ‘who knows what’ is going on in his head, is a dangerous mix. For example,

Earlier this past spring, I was laying in bed with him,unfortunately fighting a headache, as he was reading one of his favorite chapter books to me. He stopped for a second and examined a crease in the middle of my forehead as he does occasionally. This time, however, instead of making a comment about my face being cracked, me being old, or some other blunt observation that he is so well know for, he just begins to rub it:

Me: Thanks buddy. That’s actually making my headache feel much better

Adam: Mom has a headache because why?

Me: I just have a headache.

Adam: Because why?

Knowing if I don’t give him a reason, we could potentially be having this conversation for a while; I decide to proceed with the old ‘answer-the-question-with-the-actual-terminology- and-reason-and-it-should-be-over’ trick.

Me: Probably because of hormones.

Adam: Mom’s ‘Hores’ are ‘moaning’ because why?

And with that, I quickly jumped out of his bed, turned off his light and ran for the hills. That was enough questions for the night!

-or-

The time that I came home from work one day and found Adam in him room playing on his iPad. I sat down next to him on his bed and proceeded to ask him about his day. He was immediately distracted by something on my shoulder. I look to my left and realized that my bra strap was showing. I cringed and braced myself for the parade of questions that I knew were coming:

Adam: What’s that white thing?

Me: My bra strap.

Adam: Mom’s bra strap does what?

Me: Girls wear them like an undershirt.

Adam: Or to cover the pointy things on Mom’s chest.

Me: Typically never at a loss for words, I feel my face getting redder by the minute, and am now frightened as to where this conversation is heading. I then reluctantly respond: “yes”

Adam: Otherwise what will happen?

Me: ummmmm…..I don’t know, buddy, you tell me.

Adam: Otherwise, if mom doesn’t wear that white thing, her chest is going to fall all over the ground. 

I sat there, really wanting to be in his head for just one minute, realizing that he does have quite the imagination. On the other hand, maybe it’s wishful thinking, because, for the record, if I did not wear my bra, my chest definitely WOULD NOT fall all over the ground!!

I still reflect on these conversations and continue to waffle on whether he even remotely understands anything about the birds and the bees. On the other hand, I’m completely convinced that for boys, bras, boobs, hormones, and butts are just innate and he 110% totally gets it!! Regardless, I’m thoroughly convinced that I will have more to worry about with Adam  than Alex, his brother, who turns beet red at the mention of the word “girl”.

So tomorrow is day #6. 170 more days to go. Mrs. H., I can’t tell you how much we appreciate you. For sure, you have your work cut out for you. I apologize in advance.

Meanwhile, I’ll be rubbing my temples, bracing myself for another week of Adam and middle school; anticipating headaches, and at the same time praying that my ‘Hores’ don’t moan too much!!

I love him with all my butt…..and my heart!

Posted in Autism, Family, humor, kids, motherhood, Parenting, teens by

So last night, I had this dream….

Adam and I are on big yellow inner tubes floating on the Chicago River going west. I’m using my hand to paddle while frantically trying to grab his hand so that we don’t get separated. Suddenly, big military ships start heading our way and I quickly realize that they do not see us. Somehow, I get us both over to the side and a black iron fence appears out of nowhere. I reach out and grab on to it and start alternating my hands while frantically looking back to see that Adam has a hold of my tube. Out of the corner of my eye, I notice a thick brown sludge start to swirl around us. I desperately try to paddle us out with my hands. We are eventually swallowed up into the sludge and….That’s it… I wake up.

I have been playing this dream over and over in my head all day looking for meaning; and suddenly it occurred to me. I was with Adam traveling up s*it creek without a paddle…..

Who has not felt this way at one time or another with their children? As my husband likes to remind me, after our third child, Adam, was born we transitioned from playing man to man to strictly a zone defense. As soon as one fire was extinguished, another one erupted. It’s life with kids, plain and simple.

Monday is the big day. Adam has had this date circled on the calendar for months. Never mind that we still had half a year of 5th grade to finish. He has been ready for a new chapter in his life to begin before the last chapter even ended. He spent the summer practicing creating “the flow” with an obscene amount of hair gel. He has decided that he is too old to take a bath and has switched to exclusively taking showers.He faithfully washes his face every night in anticipation of the non-existent pimple all because that’s what his older brother and sister do. He has even explored deodorant. On August 24, 2015,  Adam will officially be a middle school student. His next three years will be filled with pre-teens and teens jockeying for a spot on the ladder of social hierarchy. He will be entering a new world filled with cell phones, texting, social media, boys liking girls and girls liking boys. He will be entering a world in which where you choose to sit at a lunch table is probably the single most important decision and possibly the biggest disappointment and source of drama that a middle school student will face in the first couple of weeks of school. He will be surrounded by a new world of academics and demands that can send a young 6th grader into a tailspin of uncertainty. On Monday, Adam will be navigating this new experience. He is my third child to go off to middle school, but my first middle school child to charter these socially treacherous waters with autism. He is confident and ready; and as uncertain as I am, I couldn’t be more proud.

In June, as he excitedly walked out the doors of his grade school, I couldn’t help but feel a sense of sadness for we had been a family at that school for the past 10 years. Ferris Bueller once said it perfectly: “Life moves pretty fast. If you don’t stop and look around once and awhile, you could miss it.”  This statement couldn’t be more true;  I literally blinked and elementary school for all three of my children was over. My sadness, however, was quickly replaced by a huge sense of pride, for over the past 4 years, Adam defied the naysayers. He continued to prove that he could be successful in a mainstream classroom with the proper support, which I largely attribute to a wonderful and dedicated group of teachers and therapists that have faithfully stood by Adam’s side for the past 4 years. These wonderful teachers rolled up their sleeves, and went to the mattresses for our son, when we made the decision in the middle of his first grade year to move him out of his self-contained classroom back to a mainstream class. Adam has been on quite a unique journey; a journey that I know will continue to unfold. But just as each and every child is unique, each and every child with autism is unique. Just as he has been taught by many over his short life, he has taught many, many more.

You may be scratching your head and questioning…. ‘Tales From the Butt’ ?? This very, very, VERY long story has twisted, turned, evolved and has taken on a life of itself. Just as autism is very unique. My butt is Adam’s unique autism perseveration. He loves to talk about how big it is. (I’m 5’3″ and 120 lbs.) He often expresses how ‘boincy’ and bouncy’ it is. He loves to remind me that on May 4, 2014, he noticed my butt under a blue blanket, marking the date that his fascination with my behind began. He likes to imagine that I have train tattoos on my butt. He likes to pat it, talk to it and for whatever reason make the “mmmmmmm” sound by it. He has nicknames for my butt such as ‘hip hip hooray butt’ ‘engine butt’ ‘jazzy butt’ and my all-time favorite “found it at Costco butt”.  I have tried with all my might to understand why my butt is so interesting to him. Our discussions about his fascination circle right back to that infamous day in May when my butt caught his autism eye under that blue blanket. I have identified dates on the calendar marking the time in which he needs to stop talking about my butt…..with no luck. I’ve also tried to ignore his perseveration, but his intrigue with my booty is endless. As exhausting as all of this “butt talk” can be,  I am grateful for two things: 1.) Adam is only fascinated with my butt. 2.) He is a rule follower and therefore abides to my strict instruction that he may not talk about my butt at school or the principal will call me and he will be in “big trouble”.  I have put all of his teachers on “butt alert”. This was quite a unique and interesting conversation the first time I presented it in the “parental concerns” portion of the IEP meeting. In the end, even though at times I feel like I am only a butt to him, I’ve come to realize that my son’s fascination with my butt is his unique way of expressing that he loves me.  I have no choice but to find the humor in his unique and endearing way of displaying his affection. Therefore, I in turn, love him with all of my butt….and my heart!

And so, in two more days, I will have a sophomore, a 7th grader, and Adam will land at his new middle school as a 6th grader in his own unique blaze of glory. I’m excited for him to begin his new chapter. I will be right there along side him paddling west on the Chicago River, with ships coming straight at us, helping him to navigate this socially awkward time in his own unique way. I’m sure that there will be many, many more unique ‘Tales from the Butt’ to share.