Category Archives: motherhood

And Suddenly, He’s 13

Adam is 13 today.  I now have 3 teenagers. I have to continually repeat this to myself  for I often wonder how the heck this happened so quickly. But then again, the time that it took to get here seems like an eternity.

In some ways, having teen aged children seems like an ‘old hat’. I’ve enjoyed every minute of preparing for homecoming dances, prom, and  first dates. I’ve survived driver’s education, passing the driver’s test and taking the car out for the first time. I have even survived a first ‘accident’. I’m muddling through puberty and so far, am fairly unscathed. College applications are just around the corner , but I’m feeling confident, watching my daughter navigate the process, following her lead, while standing on the sidelines giving her my full support. So far, so good.

Yesterday, I asked Adam what he wanted to do on his birthday. He already told me weeks ago that he wanted to go to ‘The Friday’s Restaurant’ for dinner, but I always like to take my kids to do something special, for I truly believe that an experience, rather than something material will be remembered long after their birthday is over. This past year, we took Lacey to a concert. Alex just saw Hamilton. And Adam, this year has chosen…the car wash.

I am not surprised, for in some ways,  he is a pretty simple kid. He goes to bed by 8:30 pm. On most days, he wakes up by 6:30 am. He  keeps his room in order; although, the  ‘order’ may only make sense to him. He can always find his things, for he puts them in the same spot every time. His Lego helicopters are placed and labeled in various places in his room. He even has a certain color that he wears for each day of the week.

Not too long ago,  I was going through a mountain of pictures,  which at one time were intended for Pintrest worthy scrapbooks. It was on this day, that I realized, once an for all, that this will never happen.  I could barely narrow down the exact year most of these photos were taken. Much to my amusement, however, it occurred to me that I could narrow down the exact day that the picture was taken based on the color of shirt that Adam was wearing. I was suddenly grateful for his extreme rigidity; for most of the time, I roll my eyes.

And as simple as he can be, he can be equally as complicated. I look back on the years of medical specialists, infections, surgeries, sleepless nights, and battles with the education system. I reflect on the amount of experts that gave us their ‘professional’ opinion ‘preparing’ us for the things that he would never do. And I look back on the immeasurable amount of time that we invested into finding the appropriate resources to prove all that we knew that Adam was capable of.

I always find it interesting when my friends lament on how they wish their kids were young again. How they miss the ‘good ‘ole days’. I sometimes feel guilty that I don’t feel the same. I don’t miss the days when Adam was younger, for at times, it felt like we were living in hell. I would not, however, change my life for anything. I would not change my son for anything, for Adam has taught me more about patience, persistence, faith, and resilience, than anyone else ever could.

But today , my ‘hat’ feels a bit unfamiliar, it feels a bit different. I am about to prepare for homecoming dances, prom from a different vantage point…autism. Will there be a first date? Only time will tell.

And then there is driver’s education. Adam’s plan of getting his permit when he is 15 and getting his driver’s license when he is 16 may follow a slightly different time line. But I have full confidence that he will be behind that wheel some day. The one thing that I do know for sure… His grand plan of getting a blue Corolla for his 16th birthday, is not going to happen.

Then there’s puberty. We are only on the outskirts of that phase. If I could find a way catapult right past the next 2 years, I would.

And I’m excited to see what college brings. I continue to hear about phenomenal post secondary programs for individuals with autism.

But for now, I will focus on day one of the teen years with autism. I’m fairly certain that I’m in for quite the ride!

 

 

 

Don’t Judge a Book…

Autism.

They say not to judge a book by it’s cover. Maybe that’s why it took so long to diagnose Adam’s autism. Adam’s cover didn’t look like autism. Maybe if he regressed in his language and skills. Maybe if he had stimmed more. Maybe if he lined up his toys, spun in circles, got fixated on ceiling fans, and had displayed all of the other characteristics of Autism, that the books describe,  he would have been diagnosed sooner. Is that good or bad? I really don’t know.

Adam’s cover also didn’t tell us that he was having hundreds, possibly thousands of seizures for the first 6 years of his life. Instead, we chased countless sinus infections, ear infections, removed his tonsils, adenoids, and reshaped his sinus cavity; all in the name of keeping him healthy. Maybe if his cover had told us that all of the infections were causing countless mini seizures. It took a 40 minute seiure to finally get a diagnosis. Could we have retrained his brain earlier?  Would his ability to process and use language still not be so far behind?  Would his language skills be more advanced? Who knows.

They say that when you’ve seen one child with autism, you’ve seen one child with autism. Adam continues to affirm this statement with every day, month and year that goes by. He is a totally different kid than he was 6 years ago when he was first diagnosed. Honestly, he’s a totally different kid than he was a mere 6 months ago. Adam is just one child with autism.

Adam’s recent IEP meeting  got me thinking. With every new school year, comes a new team. A new set of teachers who have the task of getting to know Adam. He spends many weeks in the beginning, proving his strengths. Proving why we fought so hard to move him into the mainstream.  For at the beginning of every year, I know that his cover is judged ever so slightly, by one word – Autism.  Our cover as parents is continually judged, for his new teachers don’t have the slightest idea of the journey we have traveled the past 6 years.

Adam’s cover was judged back in kindergarten, as we discussed his first grade placement.  The team ‘agreed’ that sending him to a different school in our district, and placing him in a self contained classroom was the best choice for him. My gut knows that this decision was based on one word, and one word only….Autism.

I objected. I questioned. But I was dismissed. I was assured that he would be ‘ok’. I replay that meeting in my mind over and over. And I wish over and over that my older and wiser self could go back and change that decision.  If I could do it all over again, knowing what I know now, I would not have let them place him in a self contained classroom. For during those 6 months of 1st grade, we all lived in mostly misery and we most definitely learned.

Maybe then, 1st grade would have been a much better experience for all of us. Maybe then, he wouldn’t have displayed so many behaviors at school. He wouldn’t have cried for what seemed like every waking minute. He wouldn’t have bitten his teachers. He wouldn’t have hit his friends. He wouldn’t have been sent home from school 4 times in one month. I guess, though, I would have never known that this was a violation and I would have never developed a true understanding of his rights.

Maybe then, after that 4th time he was sent home, I wouldn’t have been standing in Target, 10 days before Christmas with tears streaming down my face, truly unaware of how I got there; holding his little hand. And maybe then, my cover wouldn’t have been judged, as an elderly woman asked me if she could help me buy my son some Christmas presents.

I insisted that these behaviors were so unusual. That I knew the reason he was acting out was because Adam was so unhappy in this classroom. He repeatedly told me, in his own way, that he wanted to be back in the same grade school as his brother and sister.  These behaviors were the result of his frustration for he was not able to truly verbally express how he was feeling. He was perceived as a ‘brat’. And my parenting skills and judgement were questioned not only by educators, but friends and family.

Once again, his cover was judged and so was mine.

 As I sat in my chair at the conference table, a week ago,  I listened to each team member give their reports and updates. I listened to how his work, tests and quizzes in these general education classes are only occasionally modified. I listened to how he is beginning to recognize social cues, how he is consistently saying hello and goodbye to teachers and students in class and in the hallway.  I realized, by the slight look of surprise on some of the team members faces, his cover continues to be judged, by one word – Autism.

We discussed Adam’s interests. I described how he now has a cell phone. How he has been learning in private speech therapy, to text. How he still has an interest in trains, but a strong interest in helicopters, especially military helicopters, is starting to take over. Of course, I talked about he continues to obsess about my butt. I talked about how he loves to watch YouTube videos of kids getting into trouble. And I described how I walked into Adam’s room a month ago to find him watching a  video of girls clad in colorful bikini’s skydiving out of helicopters. I’m fairly sure that the helicopter was not the only attraction. After all he will be 13 years old in March.

Once again, the surprise, that book…that damn book.

Autism.

A Compliment. Brought to You By Autism

Posted in Autism, Family, humor, kids, life lessons, motherhood, Parenting, teens, Uncategorized by

Since when did they start calling numbers ‘integers’?? Why can’t they just be called numbers?  I helped him with math tonight. Apparently ‘we’ got half of his homework wrong. Have to appreciate Adam’s honesty. Thank goodness for Chris, or my kids would be flunking math!

It’s Really Just Your ‘Best Guess’

 

Yesterday,  I ran into an acquaintance, whom I haven’t seen in a while. We exchanged polite conversation for a few moments and then her expression changed. Her voice became quiet and serious and she asked:

‘How’s your son?’

I immediately responded:

‘Great’!

A look of surprise appeared on her face. Then a look of seriousness took over. She says:

‘No, really, how is he? Do you think he’ll go to college? Live on his own?’

So here’s the thing. There are people who hear the word ‘autism’ and think that it’s a death sentence. I’m not going to change this ignorance.  I found her question to be just plain amusing.

Adam learned a new word in science last year: Hypothesis. He loves to ask anyone he encounters the meaning of the word. And before they can give him an answer, he excitedly responds:

‘It’s your best guess.’

For him, the question never gets old. For the rest of us, it’s a completely different story.

Another one of Adam’s favorite things to do is to make up silly words. Currently, Adam’s new favorite topic is Lacey’s thighs. He loves to talk about how big they are at the top and how ‘skinny’ they are at the bottom. He also loves to present her with the question:

Lacey, what’s your ‘thighpothesis’?  

Stop it Adam’…(I’m always amazed by her endless amount of patience for him)

As always, he ignores her and responds:

‘It’s Adam’s ‘best guess’ on how to make them bigger’

And with that, he starts ticking different foods off his fingers that could possibly make her thighs bigger.

Odd? Yes. A bit creepy? Yep. Is he a typical annoying little brother? Absolutely.

The more that I think about it,  Adam’s obsession with the word, hypothesis and it’s silly variants is a bit interesting. In the beginning, his doctors provided us with their ‘best guess’ of his future based on their past experiences with patients with autism. As parents, we base our decisions by putting forth our ‘best guess’ as to what will be right. We test our guess, and make adjustments accordingly. When we all get down to it, ALL of us make daily hypotheses. None of us know for sure what the future, for our kids, holds.

The fact is, Adam is doing great. We took a leap of faith and moved him to a general education classroom with an assistant 6 years ago. There were no guarantees. We acted purely on our gut instinct. Over the years, we tested, we’ve adjusted. Adam has grown away from his behavior plan, his reward system, his regularly scheduled breaks. Trips to the ‘cozy corner’ to read a book, draw pictures of Metra trains, and run an ‘errand’ for a teacher are a thing of the past. His wonderful assistant is stepping away more and more and watching him develop more independence both academically and socially. (I’m sorry, Mrs. H. that he continues to toss his P.E. uniform to you after class. We’ll keep working on that!)  Adam is participating in class, looking to his peers for direction and asking for help. He participates in his middle school theater productions, both as a cast member and new this fall, as part of the tech crew. He is a member of the middle school concert choir. The ‘naysayers’ in Adam’s early years stressed to not get our hopes up. That he would be met with many challenges. I continue to try and wrap my brain around this message. I mean, who’s life isn’t met with challenges, diversity, heartbreak and victories? As Robin Roberts says,  ‘Everybody’s got something’ .

My biggest concern with Adam is his ability to communicate.  It is by far his biggest challenge. Communication is his ‘something’. Having a conversation with him can, at times,  be next to impossible; unless, you are dying to know about every intricate detail of every Chicago Metra train, every stop on the Chicago Metra Train line. He can recite the stops on any of the 9+ lines, both forward and backward…without looking at the map. He would make an excellent tour guide if you ever want to take in the sites of The Windy City.  We recently got him a cell phone in hope that it would spark more of an interest to communicate with family and friends. Currently, the only value that he sees in the phone is the ability to watch Metra Train videos on YouTube. For the moment…epic failure! In the end, all we can do, is continue to work on it, continue to present him with situations in which he has the chance to independently communicate. My hypothesis is that by practicing, his communication skills will get stronger.

So to answer the question that was presented to me yesterday. Yes, my hypothesis is…Adam will go to college, live on his own. This is what he talks about. This is what he wants. Will his experience look like that of his brother and sister? Maybe. Maybe Not. Quite frankly, planning that far ahead is just plain exhausting. More importantly, I need to get to the store and make my ‘best guess’ if  dinner will be a hit tonight!

P.S. I’ll admit that I’m secretly glad that Adam is currently obsessed with making a ‘thighpothesis’ instead of a ‘buttpothesis’! Sorry Lacey!

 

 

 

 

 

 

 

 

 

 

 

This is My Sign

It’s been a while since I’ve posted; partly because it’s been quite a summer with my youngest and very colorful child. This is an entirely different topic, and once school is FINALLY back in session on August 25th. I promise I’ll fill you in.

I walked into his room this afternoon to discover this:


There are exactly 200 days until he is officially a teenager. First item on my ‘to do list’ tomorrow:

Head to Binny’s and stockpile enough wine for the next 7 1/2 years. 

By the year 2023, I’m either going to end up where I work in cardiac rehab, as a patient… Or some other form of rehab.

Stay tuned my friends…

It’s a Live off Tacos and Tequila Kinda Day….Make That Week.

 

All of Adam’s 12 years have been plagued with one medical issue after another. I have spent countless hours with him, in and  out of doctor’s offices. In fact, I am fairly certain that I have taken him to every ‘ist’ known to the medical field. The poor kid has been poked, prodded, cut, stitched, scoped, you name it. All in search of a diagnosis which continues to evolve. This past week was filled with yearly follow up visits to his current doctors and specialists. In addition, we had an appointment to see a new ‘ist’. It’s truly been a ‘fake my own death, move to Mexico, and live off tacos and tequila kinda week.

As we were making our pilgrimage to see a new doctor for a recent stomach issue that Adam has been experiencing, I remarked to Chris, rather crabbily,  that I really just wanted to scream and yell at the top of my lungs, throw things, punch things…maybe even punch a few people. I wanted to shout every curse word that I could think of and in every combination that I could create. Adam has been vomiting out of the blue a number of times over the past 6 weeks; with no rhyme or reason. After visiting his pediatrician last week, we were referred to a gastroenterologist.

I was beyond crabby. I have grown to hate meeting new doctors for I am forced to delve into 12 years of his ridiculous medical history; multiple surgeries, illness after illness, after illness, his 40 minute seizure…AGAIN. I can rattle off the dates of these occurrences in my sleep. This is exactly why I tried so hard over the past week to get all of his specialists on the same page in order to maximize our time with the gastro guy. But that didn’t happen. I mean, they tried to connect, but they kept missing each other’s calls. My crabbiness also stemmed from the fact that anytime we have ever tried to figure out Adam’s symptoms, we mostly walk out of a specialist’s office with little or no answers. I was already gearing myself up for this. As we continue to drive, I look down at my Facebook account and low and behold, this picture appears:


Yep, that about sums it up. Spot. On. It truly amazes me how certain things randomly present themselves in life. Then again, maybe it isn’t so random. Regardless, I start to feel a bit less crabby. Trying to maintain my sense of humor has truly helped me get through everything with Adam. Heck, humor has helped me get through a lot of other crap over the years, too…. Maybe this really won’t be so bad.

And, it wasn’t that bad. The GI specialist confirmed that he did not believe that Adam’s vomiting was due to stomach  issues, but in turn pointed his vomiting back to his recurring sinus issues and environmental allergies.  So the good news is that we are not going to investigate GI issues, the not so good news is that we’re working on the premise of speculation. Awesome. And so typical.

We were back on the road, heading for home. I began to reflect on all of the doctor appointments that Adam had this week, and how once again, we didn’t get any definitive answers.  As frustrating as this is for me, I realize that it is just a way of life for Adam. It’s all that he has ever known. He has never complained and always has a smile on his face despite everything he has been through.

Adam EEG 2016

Adam’s annual EEG

Once again, Adam’s journey is forcing me to keep perspective. Although this week was filled with a large amount of uncertainty, Adam was able to continue to get me see the humor in all of this. From singing ‘Cake by the Ocean’ at the top of our lungs on our way to the ENT, to Adam signing in as ‘Adam Gordon James Ketcham’ in the ENT office. (He continues to campaign for his name change) Then precisely announcing to the entire staff, at the pediatrician’s office that he is here because ‘he threw up his whole stomach at Culver’s. To his remark this morning, at 2:30 am, while we were awake and preparing for his sleep deprivation EEG; that he ‘would not eat cake by the ocean because the cake would be too wet and too gross’. He then proceeded to mention that he would, however, ‘eat pretzels by a port-o-potty’. I had no idea what he meant, but he sure thought his ‘witty’ remark was absolutely hysterical.

I often get asked how I keep my sense of humor through all that we have experienced with Adam. Early this morning, as I sat in the dark watching the Minion movies for the one millionth time, it occurred to me. Adam helps me keep my sense of humor. Adam gets me through all of this. We help each other.

However, I cannot deny that Mexico, tacos, and tequila still sounds kind of appealing!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

‘A Rose By Any Other Name Would Smell As Sweet’

The good news is, he is not talking about my butt AS much any more. It only comes up about 2-3 times per day as opposed to upwards of 20 times. His newest perseveration, for there is always something that seems to occupy Adam’s mind;  is his desire to turn 18 years old. For once he turns 18, he will get to do two things; swim in the adult swim at the pool, and change his name to Gordon.

I get wanting to be older. One of my earliest memories is being 3 years old in preschool. I was so jealous of the 4 year old class for they had this, in my opinion, really awesome slide that only their class was allowed to use, for they were ‘the big kids’. I remember sitting on our dinky little 3 year old slide wistfully watching the older kids. It really wasn’t the fact the slide was all that great, but more the fact that using the slide was forbidden. And, in life, we always seem to want what we can’t have. I’m sure the same will hold true for Adam, once he turns 18 and is finally allowed to swim with the adults. I’m fairly certain that he will find that swimming with adults is not all that it is cracked up to be. But he keeps talking about it. Non. Stop. I’m just taking it day by day and hoping that the appeal of swimming during the adult swim at the pool will subside.

But what I find more interesting  is Adam’s desire to change his name to Gordon. Why Gordon? For weeks,  I racked my brain. Finally, it occurred to me what sparked this idea. I suspected this was because Adam  was obsessed with the character train Gordon from Thomas the Tank Engine. The one and only television show in which he ever had any interest in watching when he was younger. Upon questioning him, he was adamant in stating that he is too old for Thomas, but then proceeded to say that changing his name to Gordon was ‘kind of like when mom loved the Brady Bunch when she was younger’ I acknowledged that I did in fact LOVE Brady Bunch. I also reminded him that it never, ever, occurred to me to change my name to Marcia, Jan, or Cindy. He continued to neither confirm nor deny that Gordon was related to Thomas the Tank Engine. Knowing that we could theoretically be having this conversation for days, I let it go. In the end, he wants to change his name to Gordon. End. Of. Story.

What I find the most interesting  is the reason that he wants to change his name. He is named after my grandfather. Chris and I had agreed almost immediately that Adam would be his name if he was a boy. In our opinion, it was a nice, strong, straightforward name, that could not easily be replaced by a nickname. Until now.

This past winter, something triggered his strong interest in all of his great grandparents names. Upon learning that he was named after my grandfather, Adam requested to meet him. Unfortunately, my grandfather passed away when I was in high school. Bracing myself for the parade of questions that I knew were coming, I sigh and say:

Grandpa Adam is dead. Unfortunately, his autism forces me to be blunt and straightforward. There is absolutely no point in sugar coating anything, for I would just have to keep explaining until he understands.

How did he die?

He most likely had a heart attack before he hit is head and fell down the stairs.

I felt cold and insensitive in explaining my grandfather’s death in this matter to him, but it’s the only way that Adam understands. Cold. Hard. Facts.

Adam doesn’t like having the same name as a person who is ‘all dead’, so Adam is changing his name to Gordon.

For the next few months, he only wanted to be addressed by the name Gordon. I reminded him several times that there are many ‘dead Gordons’ too. However, he  reminded me that he does not personally know any dead Gordons. He wasn’t buying it. So much for trying.

One day as he was going through his entire script about how his great grandfather died and then moving into the topic of his impending name change, I mentioned to him that he could not legally change his name to Gordon until he is 18 years old; all in desperate hope that this fact would put a stop to all this madness.

He says:

So Adam is going to have his name until he is 18 years old and Adam is going to have to ‘deal with it’.

And mom is going to pretend that Adam’s name is Gordon for 6 more years and she is going to have to ‘deal with it’

Ok. He got me. I may need to accept the fact that my youngest son  may someday actually change his name to Gordon. In the grand scheme of things, I’m fairly sure that there will most likely be bigger battles to fight!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

Posted in Autism, motherhood by

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

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

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

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

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

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

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

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

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

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

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

For instance

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

or

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

then

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

and

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

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