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.

 

 

 

 

 

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

 

 

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

 

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.