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

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!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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…….