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.

 

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.

 

 

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

For instance

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

or

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

then

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

and

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

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

 

 

 

 

 

 

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.