Author Archives: KimberlyKetcham

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.

 

 

 

 

 

To Comprehend or Not To Comprehend….the Ongoing Question

Last week, Adam re-entered private speech therapy, for probably the 5th time his short life. This time, however, it was a bit tougher for me to explain to him, for unlike the other 4 times, he started to pepper me with 20 questions as to why he needed to go back to ‘speech class’.  As he put it:

“Adam is ‘conversating’ just fine. Mom can know why Adam is going back to speech class”

….And, that, my friends, is EXACTLY why, my son is once again, re-entering therapy.

The fact of the matter is, Adam doesn’t at all see anything different regarding the way his speech has formed. In his mind, he gets his point across. He uses vocabulary that is familiar to him; and his family, friends, teachers and coaches help fill in the rest of the blanks when the ‘conversating’ gets a bit sketchy. He confuses pronouns; calling boys ‘shes’, girls ‘hes’; he calls himself ‘you’ instead of ‘me’ and  from time to time, still refers to himself in the third person (thanks a lot Elmo). I truthfully sometimes feel like he’s Abbott and I’m Costello in the sketch “Who’s on First”.

So aside from trying to sort out Adam’s use of language, his speech therapist has been given the task of helping Adam to improve his reading comprehension by helping him to really understand the meaning of the words he is using. We are hoping that if he can learn to make a connection to the words that he is reading, he will improve his ability to recall what he has read and what he has heard.

For years, I have struggled with Adam’s ability to comprehend. When his teachers said ‘no’ to comprehension,  I said  ‘yes’ and when his teachers said ‘yes’, I said ‘no’. It’s like watching a tennis match at Wimbledon.  When his reading and comprehension levels are tested at school, although he can fluently read the words of anything that he is given, he consistently tests at a beginning 2nd grade level at best. He looks like absolute crap on paper. We are continually working on closing a gap that seems to just be getting wider.

A few weekends ago, my daughter, Lacey performed in her high school dance company’s annual dance show. Adam, along with several of his friends, who are all a part of a wonderful  athletic program for special needs students, in which our school district sponsors, also performed in the show. I watched Adam show off his best dance moves to Taylor Swift’s ‘Shake it Off’, quickly exit the stage, and settle into a seat, front and center, in the very first row of the auditorium all by himself. The M.C.’s for the evening, who are basically there to kill a little time while the dance company makes costume changes,  entered the stage. To the audience, they ask the question;

“Who has been the biggest influence in your life?”

Adam’s hand shot like an arrow into the air. I could literally hears gasps in the auditorium, for, that evening,several friends were in the audience who know Adam very well. As one of the M.C.’s started walking toward him, I immediately sank into my seat; my hands going straight to my head and I started to pray as hard and as fast as I could…

Please don’t say my mom’s butt, please don’t say my mom’s butt. Please say ANYTHING but mom’s butt!!!!

As Adam started to speak, my eyes shot  to the front row.  I couldn’t believe my ears:

My mom, dad, Alex, Lacey, Annie, Bentley, and Lizzie

….the cat, whom he hates, even made the list.

I was stunned! He answered the question with the appropriate answer! I still can hear the collective sigh of relief throughout the auditorium.

He is comprehending….

Fast forward to earlier this week; I was helping Adam study for his health quiz:

Me: Liver

Adam: Helps to metabolize carbohydrates

Me: Pancreas

Adam: Makes insulin

Me: Esophagus

Adam: Carries food from mouth to stomach

He’s totally comprehending

Me: Uterus

Adam: Holds a growing baby until birth

Me: Ovaries (can this be over soon?)

Adam: Produce hormones and release eggs

Of course he is comprehending

Me: (cringing) Gonads

Adam: Testes

He then stops, squints at my waist and says:

Adam wants to see mom’s gonads

Please. Shoot. Me. Now….he’s not comprehending.

On second thought, I’m going to let his speech therapist continue to sort this out!

 

 

 

 

 

 

 

 

Dr. Martin Luther King Jr. Loved Metra Trains

Buffalo Grove Train Station

Dr. Martin Luther King Jr.’s birthday. A day off of school, work, a day to remember a great man, a great leader who was taken from us way too soon. I always wonder what he truly would have achieved if he had not died. We have spent the last week learning about Dr. King in the second grade classroom in which I work. I know that my own kids have continued to discuss his numerous contributions to the Civil Rights Movement. Adam has had this day circled on his wall calendar for weeks. He has been waiting anxiously for, I’m sure what seems like forever in his mind.

You see, although Adam loves to learn about events and dates in history, and he has recited many facts about Dr. King,  January 18, 2016 was his next day off of school. His next opportunity to make another pilgrimage to yet another Chicago Metra station. As we are getting in the car, Adam starts going through his scripted dialogue, which I have heard all weekend.

Mom ‘spaced out’ and didn’t take Adam to the Buffalo Grove train station this weekend so we are now going on Monday, January 18, 2016. 

Ok, so I need to set a few things straight:

First of all, I didn’t ‘space out’. I have just learned that I need to strategically plan these visits, for, if Adam had his way, visiting Metra Stations and riding the Metra train is ALL  I would do in my free time.

In addition, visiting a particular Metra station once with Adam is never enough. There is always something new to discover, something new to take in. A new detail to digest. Autism doesn’t allow the Metra train or it’s station to get old.

We begin to drive and  Adam says to me:

Martin Luther King loved Metra trains

Huh. How do you know that he loved Metra trains buddy?

Because Martin Luther King starts with an ‘M’ and Metra starts with an ‘M’. They match! That’s why Adam knows that ‘Martin’ (now they’re on a first name basis) loved Metra trains.

I started to speak, but no words exited. My mouth slowly closed and I decided that it was just not worth it. For anything that I would potentially say would be rebutted with one of his classic responses such as ‘mom’s talking was hurting his ears’, or something of the like. It just wasn’t worth it. In his mind, his reasoning made sense, and he’s already moved on. WAY on. We continue to drive in silence. Me, deep in thought, and Adam with his eyes as wide as saucers and an enormous grin on his face.  We have arrived at the train station! One that we have never visited, however, he has studied it’s every minute detail in pictures that he has Googled. He immediately rips off his seat belt before I even get a chance to fully park. He starts stimming; drumming his fingers together in front of his face rapidly, as he often does when he is excited. Once again, I’ve lost him to the Metra. He is not in his right mind.

I quickly grab my hat and gloves,  glance at my car thermometer and note that it reads -3 F. We won’t be out here long…I pray that we are not out here long. Adam’s world stops when it comes to anything to do with the Metra. As I am sprinting to keep up with him, I note that his head moved ever so slightly to the left and right to check for cars. Wha hooo!! He’s finally remembering to check for cars! Or maybe I was just hoping.

After about 20 poses of Adam standing outside the station and 1oo more shots of the various angles of just the station alone, Adam thankfully decides that it really is insanely cold and he makes a run for the car. He once again barely turns his head to look for cars, but he did look a little, right?

He couldn’t get his seat belt on fast enough and immediately starts swiping through his new pictures on his iPad at warp speed. I notice his eyeballs jumping back and forth, up and down, absorbing every detail of those pictures like a sponge. Soon he will be reciting random facts about the number of bricks, how many cracks in the mortar, and the number of shingles this train station contains. I sigh, and smile ever so slightly.

You see, although Adam’s obsession with the Metra train, the Metra stations and the maps of the Metra line can be a bit overwhelming to me at times, it truthfully isn’t. It’s really such a simple thing. All he really ever wants to do on a day off of school is take a leisurely drive to a Metra station, take a few pictures, admire, in his mind, it’s remarkable beauty, and go home.  Going to a Metra station doesn’t cost me a dime,  except maybe a little bit of gas. I get to spend time with my son in the car, listening to his theory and reasoning of why Dr. Martin Luther King loved Metra trains. But most importantly, I get to witness the pure joy on his face, as if I took him to Disney World.

 

 

 

 

 

 

 

 

 

 

 

A Letter to My Son’s…and My Daughter’s IEP

Hi There! It’s me again…

It’s been a while since I’ve actually opened both of you. Maybe it’s because I have you memorized like the back of my hand. Or maybe, it’s because I truthfully get a bit sick (both physically and mentally) of you sometimes… You and I both know that there are some reasons for that.

Regardless, once again it’s January, and in a few days, we will be meeting along with several others. They call us a team. Your drafts have already been sent home for my review, my notes and questions have been made.

In a few days a copy of your 25+ pages will be passed out to each member of the team. We will start by introducing ourselves; and then the real fun begins. Over the course of two hours (sometimes longer) we will discuss my parent concerns and then your present levels of functioning. We will discuss your goal data, and determine whether the goals written on your precious pages have been met. If your goals haven’t been met, we will discuss the possible causes, brainstorm solutions and reword the goal until the verbiage is so intricately precise. All in hope of giving my son and daughter the best chance possible to make progress in order to achieve academic success. We will then discuss and determine each of their classroom accommodations:

Will a 4×6 or a 3×5 index card be allowed to be brought to class to remember math and science formulas? Yes, your words are that specific.

You state that you do not allow double sided worksheets/articles to be given to my son or daughter for flipping back and forth is too distracting.

You make it clear that study guides are to be given no less than 4 days in advance.

You state that tests are to be read to my children, there are to be no true /false questions and they are to get the double allotment of time to take assessments for, their processing disorders make all of the above challenging.

I won’t bore you with the many  other speech, OT and social work accommodations that you hold. You know exactly what it says.

We both know that an enormous amount of time is dedicated to combing through your words, for, as nit-picky as it is, these very important details help to ensure that my children achieve academic success. A few more loose ends are tied up. And if everything goes well, and everyone is in agreement, signatures are obtained and your new pages are ready to be followed….that’s in a perfect world.

Now don’t get me wrong, most of the team takes you back and begins to painstakingly implement your every word immediately. But there’s seems to  always be  that one team member. The one who thinks that they are above you. The one who thinks that it isn’t their job, but someone else’s, to read you or even acknowledge you. The one who thinks part, if not all of you is stupid. The one who thinks that they don’t have time for you. The one who takes your precious pages and tosses you aside, throws you in a drawer. It’s funny how that one team member is always the first to roll their eyes at my children, get frustrated  when they aren’t understanding or performing. And they are always the first to call and tell me. It has to be an awful feeling to be abandoned like that after the entire team worked so hard to create your pages. If only your words were read. If only you were heard.

Honestly,  as much as I truly love and appreciate you, I really wish that you were not a such an enormous part of my life. Oh how I wish that I could send my children to school and go about my day without you being on my mind, every hour, heck, every minute for that matter. How I wish that I did not have to use up precious vacation time to meet with the team or field phone calls and emails.. I mean, a beach and an umbrella drink sounds so much better than a board room; and if given the choice, I would think that you would much rather still be a tree.

And then there’s my reputation that you have indirectly helped me to achieve. I know that I am “That Mom”. I know that I have been called a b*itch. I also have heard through the grapevine that I am a “piece of work”. That’s been my favorite phrase to date. But no worries, as the old ‘sticks and stones’ adage goes…..names will not hurt me. You and I both know that my children are entitled by law, to receive a free and appropriate education; so therefore, you are the law.  you are to be followed. I guess that together, we will have to continue to be that reminder. If only we were all a part of the team.

So, in a few days, the team will be gathering to pour over your precious pages. We will review you, discuss you,  dissect you, and sign you. I just sincerely hope that this year, everyone spends time with you and really gets to know you. Because after being a part of an IEP team for 13 years, I know that you really truly do have a lot to say. You really do know how to make the lives of all those involved a WHOLE lot easier.  You just need to be heard.

With Love,

Mom

 

 

Tales From the Butt

Posted in Uncategorized by

Being new to the world of blogging, I truly appreciate all of the support, likes, follows and shares of my blog posts. I am looking forward to continuing to share my son’s and our family’s story of autism.

Happy New Year to all of my friends and family. I also want to wish my WordPress family the best of luck blogging in 2016. Look forward to reading more of your words!!

He found this one day at a garden center. I couldn’t resist!!
Yes, this did happen….

 

The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 1,400 times in 2015. If it were a cable car, it would take about 23 trips to carry that many people.

Click here to see the complete report.

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

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

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

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

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

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

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

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

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

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

The list could go on and on……

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

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

 

I am the Butt

Posted in About Me by

Welcome! Please let me take a moment to introduce myself……I am the Butt!

My name is Kim Ketcham. I have been married to my wonderful husband, Chris for 18 years and we have 3 children, Lacey 15, Alex, 12, and Adam 11. My kids keep me very busy. I absolutely love watching my daughter dance for her high school dance company. I also love watching my boys play baseball, soccer, basketball and doing Tae Kwon Do. We love living in the northwest suburbs of Chicago, and love our Chicago sports…especially the Blackhawks and the Cubs!

Being a mom to 3 kids is probably the most challenging and by far, the most rewarding job that I will ever have. However, throw a child with autism into the mix and life takes on an entirely new meaning. We have had many, many, MANY challenges with our youngest son Adam. There have been times when I didn’t know if I could muster up the energy to wake up and start all over again the next day. But on the flip side, raising a child with autism is pretty darn funny. I have learned how to look at the world through his eyes and I am really enjoying the journey!!

Kids with autism have many perseverations. I am sure that you have heard of kids getting hooked on trains, movies, music, various types of transportation, etc. They can talk hours and hours about their favorite topics. I however, got lucky enough to have a son with autism who takes an in-depth interest in my butt. He likes to remind me of the that infamous day, on May 4, 2014, when my butt caught his autism eye under a blue blanket. That was it…he was hooked.

Adam can talk for hours about my behind. He has nicknames for my butt, he loves to talk to my butt, he loves to pat it, pretend to tatoo it with some of his favorite train engine numbers. Ironically, he has found tomatoes in our garden in the shape of a butt. It would be all “butt talk” all the time, if I let him. We have strict rules in our house as to when and how much he can talk about my behind. In fact, his perseveration has become the “butt” of all of my friend’s jokes. My butt is so well-known all around town and I often wake up to text messages of funny pictures, tagged in “butt” posts on Facebook. I honestly never thought that I would be famous for my booty under these unique circumstances.

So now that you have a little background about me and the title of my blog, I hope that you visit often and enjoy reading my Tales from the Butt!

Mom's butt nicknames

I feel so loved…..

Butt nicknames...the revised addition

…oh, but there’s more! Luckily, I dodged the tatoo this summer!!

tomato butt1

This appeared in his beloved tomato garden in August!

butt pics#2

Found this in a garden center not too long ago and couldn’t resist!

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.

 

 

 

 

 

 

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

Posted in life lessons by

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

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

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

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

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

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

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

He even tackled that challenging board break!

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


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

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