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…….

 

 

 

 

 

 

 

 

 

 

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

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

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

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

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

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

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

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

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

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

The list could go on and on……

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

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

 

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

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

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

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

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

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

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

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

He even tackled that challenging board break!

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


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

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

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

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

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

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

not my circus

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

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

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

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

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

HEY INTOLERANCE, ASSUMPTION, and IGNORANCE!!!

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