Suddenly, I Have Perspective

I was recently presented with a question:

What is your autism super power?

I immediately answered:

Perspective

From the second that Adam took his first breath, I had this feeling deep in my gut that raising this child would be a different experience than with my two older children. My intuition was on high alert. To this day, I still  can’t explain it. Never in a million years did I imagine that I would raise a child with autism and a seizure disorder.

Never in my wildest dreams did I ever imagine burning through our savings, have to refinance our house not once, not twice, but three times in order to keep up with the insurmountable medical and therapy bills that we would soon face. The term college fund is humorous to me; for college will be out of the question, if we don’t address his immediate concerns and needs. Ironically,  we are rapidly spending his college fund so that he will have the best chance possible to go to college.

Adam’s journey has changed who I am. It has changed who Chris is. It has changed who my two older children are. It has changed us as a family. I think that anyone who has experienced a crisis with a child will agree. It is life altering, life changing and most of the time happens suddenly.

For one Saturday in January of 2010, I had just brought  Adam home from tae kwon do.

As I was making lunch, he suddenly started speaking ‘jibberish’, his eyes rolled back and he vomited.

Suddenly, the paramedics were rushing him to the hospital for he was having a seizure.

Suddenly, I realize that the doctors and nurses are cutting off his beloved tae kwon do uniform and rapidly hooking him up to every machine imaginable.

Suddenly, I notice the ER doctor pacing and shouting orders, as I am told that Adam’s seizure is continuing… 40 minutes after our arrival at the hospital.

Suddenly, I am at Adam’s side, pleading with God to let me have more time with my son.

Then suddenly, my prayers are answered. The seizure is over.

Suddenly, I notice that I am straddling my son on a gurney as we are being whisked to a CT scan in search of what caused the seizure.

Suddenly,  a nurse is waving consents in my face as she is rattling off the possibility of a brain tumor, an aneurysm and a number of other frightening conditions that never, ever, entered my mind.

And suddenly, I find myself in the front seat of a transport ambulance,  a wall of glass dividing Adam and me, as a nurse, delivers deliberate ventilations during the entire 30 minute ride to the children’s hospital.

Suddenly, I realize that his life is in their hands.

Suddenly I feel completely helpless as I watch him lying in bed, machines keeping him alive.

Then suddenly, a friend posing as my ‘sister’ talks her way into the ICU for no other reason than just to be by my side.

And suddenly I have perspective.

Suddenly, after spending two hours speaking with our neurologist we finally have a diagnosis after 5 years of searching.

Suddenly, as crazy as it sounds, I feel nothing but relief. I’m grateful that my longtime suspicions are finally confirmed.

And suddenly I have perspective. Nothing in the world mattered, except walking out of that hospital with Adam.

Suddenly life as we know it has changed, and in some ways it is completely the same.

Suddenly our lives are dictated by speech, occupational, and behavioral therapy appointments. Not to mentions intense tutoring sessions.

Suddenly, I have perspective.

Suddenly, I realize that the things we take for granted are the most difficult tasks for Adam to master.

Suddenly I have perspective.

Suddenly, I realize that every baby step  that Adam tackles is actually a huge victory.

Suddenly I have perspective.

Suddenly I find myself agreeing with teachers,and then adamantly disagreeing with teachers;

Suddenly I find myself researching, educating and advocating. Advocating, educating, and researching. This part never ends.

Suddenly I find myself crying and laughing all in the same moment.

Suddenly I feel hopeless.

Suddenly I feel hopeful; then hopeless; then hopeful again.

Suddenly longtime friends feel like distant strangers.

Suddenly distant strangers become my best friends.

And suddenly an entire salon is selflessly honoring my son and individuals just like him; by raising money to support autism research.

Salon Coccole Autism Awareness 2016

Suddenly, I realize that in his short 12 years, Adam has taught me so much about love, hope, compassion, perseverance, bravery and patience.

Suddenly, I have perspective.

 

 

 

 

 

 

 

 

As I watched Adam grow and develop, I knew something was different. Something didn’t feel right. Maybe it was his constant ear infections, his constant sinus infections. Suddenly, antibiotics became Adam’s 5th major food group. He was on them more than he wasn’t. When he got sick, he regressed. When he was well, suddenly, he progressed. For 5 years, I visited every ‘ist’ in the Chicago area; you name the specialist, I sat in that office on a quest to find the source of his infections. Every test, every scan, ever doctor told me that there was nothing physically wrong with my son. They also told me that Adam did not have autism. Most parents would be relieved by these words. Instead, these words just continued to frustrate me. I knew that they were wrong.

 

Yet Another Lesson In Patience

Last week, a co-worker questioned me about my favorite part of our recent trip to Arizona. We had just attended a Cubs spring training game, took a drive to experience the town of Sedona,  had taken an afternoon hike at Camelback Mountain, and spent many relaxing days by the pool. We had even gotten to see the sun for 7 whole days in a row. If you’re from Chicago, this is a really big deal after surviving our winters. It was a very fun week. Without hesitation, though, I immediately answered:

Going to dinner

My answer was not the result of me needing a break from cooking. In all honesty, I like the process of cooking, especially when I have more time. When vacationing, we almost always look for accommodations that offer a full kitchen so that we can take our time, try new recipes, and relax as a family; without all of the other distractions that come with being at home. Once again, we rented a condo with a kitchen, but this vacation was different.

Almost two years ago, my middle son, Alex had a late afternoon baseball game on a Sunday. We decided to stop for dinner on the way home. It was a pretty typical way to end a day after baseball. Adam had always loved the ‘going to dinner part’ of watching his brother’s baseball games.

Until that day in June 2014.

He had been acting a bit unusual; not his typical happy self. We chalked it up to being tired, hot and hungry. But with Adam, I have been conditioned to always be on alert. My gut was telling me that something more was going on. We sat down to eat and he started to gag. I gasped. It was the reason he was “off”. He was getting sick.

I have wished so many times over the past two years that I could take that ‘gasp’ back.

There was a time that Adam LOVED going to dinner. He would ask daily if we were going to dinner. He even made up a little song about going to dinner. A song that  he would  sing so much that there were many times I wished that he would stop.

For two years, I have longed to hear that song again.

I’ll admit, I am a self proclaimed vomit phobic. Vomiting is beyond my biggest fear. I hate it. I worry about it. I think about it….as much as I hate to admit; almost daily.

That gasp was my anxiety and fear of puke. And this gasp has caused so much anxiety in Adam over the past two years. Unfortunately, he associated getting sick with eating in a restaurant. Honestly, he has associated this ‘gasp’ with just eating in general…..but only in my presence.

For the past two years, he has taken his food to the dining room and sat by himself. He has pulled his signature black engineer hat far down over his eyes so that he does not have to look at me while he is eating. It has killed me to see how anxious that I have made him about eating. There have been times, many times that I would make him something and then leave the room entirely while he was eating. He has refused repeatedly to go to restaurants. There has been only one restaurant that, according to Adam, has been acceptable; and even then, he has requested that we go through the drive through and come home. My anxiety has just continued to build on his anxiety. It has been a vicious cycle. I have sought advice from professionals, friends, and even his doctors who have strongly advised me to continue to try and ‘plow through’ and act ‘normal’. Adam’s neurologist has been very reluctant to begin treatment for he strongly felt that we could possibly make his anxiety about eating worse. He told me to be patient. So for two years, we have  largely avoided each other at meals. It’s been so frustratingly difficult, for all of us. However, Lacey and Alex, have amazed me with their patience. They’ve never complained when we have ordered from Adam’s favorite restaurant; but I have felt their unspoken frustration. This is just one  of the countless times that they have been expected to compromise, for they are siblings of a brother with special needs. I have been patient. We ALL have been patient. There have been a handful of times that we have tried going to a restaurant with Adam, but his anxiety and my anxiety fed off of each other to such a degree that we were both so relieved that it was over. Until our trip to Arizona last week.

We found ourselves sitting in a restaurant in the Dallas/Ft. Worth airport on a layover on the front end of our trip. As we followed the hostess to sit down, I felt my fierce tension, that has been so familiar to me, spread throughout my body. I glanced out of the corner of my eye at Adam. His black hat was still on straight. He sat down next to Alex and immediately began working on a maze on the kid’s menu. The server came by to introduce herself. Without looking up from his maze, Adam says:

Adam will have chicken tenders and fries and water please.

Chris, Alex and I quickly picked the first thing that we could find off the menu and handed them over to the server. Within minutes, our food arrived and we ate; mostly in silence; but Adam and I did it! We ate side by side in a restaurant. No hiding behind his hat. No getting up 20 times to go to the bathroom; but as calmly and as anxiety free as I can remember in a long, LONG time. As we were walking out of the restaurant and heading to our terminal, I heard Adam quietly singing his “restaurant song”; the song that I have been wanting to hear for so long. I felt the weight, ever so slightly lift off of my shoulders. Maybe this was truly the moment that I have been told for so long to be patient for.

Later that night, as we were getting settled into our hotel room, Adam asked:

Which restaurant is next?

( I could feel the surprise on my face) What about going to dinner for dad’s birthday on Saturday, ok buddy?

Ok, Boincy Bouncy (his nickname for my butt) but Adam doesn’t like the word ok. Mom needs to say ‘alright’

I sigh….alright buddy. (it’s always something with him)

Saturday came. After a fun, full day at the Cubs game, we decided to go to a Mexican restaurant for dinner. As we sat down, Adam immediately started cracking up, picked up the Corona salt and pepper shakers in the middle of the table and lined them up in front of him. He LOVES salt and pepper. He turned them around and held them up and said:

Adam wants these for Christmas. Mom can take Adam’s picture.

As we ate dinner, I silently noted that this was the most relaxed that I can remember Adam being in a restaurant. Heck, it was the most relaxed that I, myself can remember feeling in a restaurant in what seems like forever. Suddenly my heart felt hopeful. My heart felt happy. Hopefully we can start going to dinner just like everyone else again.

Appropriate or not, Adam will be getting those salt and pepper shakers for Christmas. The pure joy in his face is the priceless moment at dinner that I will remember forever from our recent trip. As much fun as all of the other activities were, they were just minor details.

Last night, as I was turning out his light, Adam started singing his restaurant song again. I smiled and said:

Good night buddy.

Good night ‘Boincy Bouncy’. He then resumed singing. Are we going out to dinner?

I smiled, quietly closed the door and silently answered him:

Anytime you want Adam.

I think that we have finally turned a corner…….

 

 

 

 

 

 

 

 

 

 

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.

 

 

 

 

 

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

 

 

My Hores are Moaning

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!

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.