Blog #30 Open Book

“Thank you so much for sharing Ian with the students.  My son rarely talks much about his day in school, but when I picked him up Tuesday, he started telling me about Literature class and your son being there. It was amazing to hear him talk like this, and be so enthusiastic about something.  I can tell it was an experience he loved and will not forget.”  -Father of my student

Connection

As a teacher, I am keenly aware of the litany of literature standards my students are required to master. My heart tugs however, when I think about how genuine connections and honest conversations far outweigh any lecture or textbook assignment. The ultimate goal: balancing both. True to my authentic self, I candidly open up about my life and my family. At times I share a realistic story about the challenges we face raising Ian. I accept that my emotions will surface when talking about him and instead of holding them back, I welcome the tears and allow them to stream down my face. Like the novels I teach, I am an open book – laughing, crying and celebrating as they ‘read’ the pages of my life. Ian’s name often comes up during relaxed conversations, or in the midst of a lesson. I enthusiastically chat about his favorite sport with the avid hockey players in the group, share goofy pictures, and impart wild stories we have experienced. I believe most would say they felt as if they ‘knew’ Ian before he entered the walls of my 7th grade classroom in New Richmond Middle School. However, it has taken much practice to get us to this point.

Augsburg 

For the past fifteen years, my husband, Chad; daughter, Grace; Ian and I have had the privilege to speak to students at Augsburg College in Minneapolis. As a family, we spend an hour sharing about the impact of Down syndrome on our lives. We tailor our presentation to be relevant for those who hope to pursue a career advocating for children and adults who have special needs. This experience is invaluable to the college students, and their feedback has reflected this. Inspired by this opportunity, I am excited to pursue future speaking engagements with Ian by my side. If college students gain knowledge and benefit from Ian, the possibilities are endless. The first stop on this journey: my very own classroom.

The Ian Show

On November 21st,* Ian stormed into my classroom ready to give a presentation about himself to my 7th grade literature students. He loved every minute of being on my classroom ‘stage.’  He was oblivious to how his interactions would stretch far beyond the four walls of the room. Ian’s previous years of speaking experience at Augsburg were showing up in unexpected ways, as he interpreted each slide with ease, and operated the technology like a pro. Simultaneously, and a bit unexpectedly, the interaction between Ian and I grew stronger with each moment that day. We bantered back and forth in front of giggling adolescence, who got a kick out of our conversation. When I would try to insert extra commentary, Ian abruptly held his hand up and demanded,  “Hey Mom, stop. I can do this!” 

Despite his enthusiasm throughout the day, I was still fully prepared for the last hour meltdown, which I often experience when teaching the same lesson for the fifth time in a row. I imagined Ian hiding out in the back of my room, hacking away at some sports game on his Nintendo Switch, while refusing to present to the impatiently waiting 7th graders.  I admit, I vastly underestimated him because the exact opposite happened: Feeding off my students’ energy, this final ‘show’ was electric! 

“I thought it was great! I was able to understand him, and it was an honor to meet him. (No offense Mrs. Witt about your presentation not being as fun.)” -My Student

Relativity

“Ian’s presentation helped us learn a lot about Down syndrome, it really helped us understand how people like him live and learn, it also teaches us about jobs that we could have to help with people with Down syndrome or other disabilities.” –My Student

As part of Ian’s talk, he explained the integral role his personal care workers (PCAs) have played in his life throughout the years.  With a huge grin on his face, he described how these ‘friends’ would hang out with him (aka supervise the little scoundrel) at our house, chauffeur him to fun destinations, encourage him to play hockey, and thankfully even tag along on family vacations. He insisted on calling each PCA by name, as he pointed to their picture on the big screen. I chimed in, explaining the job responsibilities, as well as the skills required and patience necessary to pursue this career path. At that moment, a light bulb appeared as I took into account our teenage audience, who likely have babysitting experience – a stepping stone to being a PCA. I realized Ian’s visit was becoming more than just learning about him and the traits of Down syndrome. I am certain we sparked an interest in future opportunities my students may not have known about otherwise. In real-time, we witnessed Ian’s impact.

Acceptance

“Ian and Mrs. Witt’s presentation teaches students about Down syndrome in a more fun, personalized manner that wouldn’t be found anywhere else. It’s unlikely anybody here would experience anything similar any time soon. Education on people different from “normal people” can also reduce bullying and bigotry towards people in marginalized groups because it teaches people about what it is and what it means.” -My Student

During middle school, one of the most challenging times in life, students struggle to make sense of themselves, others, and the world around them. Due to this uncertainty and lack of confidence with who they are, they sometimes resort to treating others who are different – whether it be race, social status, sexual orientation, or the shoes on their feet – with a lack of kindness and respect.  If my students’ time with Ian sheds light on the importance of treating others the way you would want to be treated, we are making the world a better place. 

“Thank you for sharing Ian’s life journey. My daughter enjoyed Ian’s visit and learned a lot about his involvement in school and sports. She described to me how he is so friendly and social to everyone, especially joining the group for lunch. He is an inspiration!…” –Mother of my student

Dance 

Stepping out of our session agenda, Ian requested Taylor Swift’s song, “King of My Heart.” How could I deny him the chance to show off his stellar moves, especially after such a captivating speech? Within seconds, the energy in the room was palpable as Ian led a dance, and my students mimicked every move. It is rare when others follow Ian’s lead, yet the entire class did so without hesitation. Not planned or rehearsed, it proved to be one of the best ‘shows’ I have witnessed. My students, who usually sit compliantly each day, listening to lessons on figurative language, and analyzing literary passages with me, danced without a care in the world. 

The goal of inviting Ian into my classroom was to raise awareness and promote acceptance for those with special needs. What I could not have predicted was how deeply our message would resonate with my students and their families with every word spoken and smile shared. The students immediately opened themselves up to Ian and welcomed him into their world.  These magic moments wrote a new chapter in our open book.

 

*The number 21 is significant. Ian has three copies of chromosome 21.  Ian’s hockey number is 21. Ian’s first meeting with my student was on the 21st.

If you would like Ian to speak at your school, business or organization, email his agent (a.k.a his mom) to tailor his presentation to your needs.  lisa@littlewitt.com

New Richmond School District Social Media Post!

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Blog #29 The Rule Makers

 

“Know the rules well, so you can break them effectively”  ~Dalai Lama

 

Preface

My father, who Ian calls Grandpa B, was notorious for what can only be described as, ‘flying in the face of all rules,’ and being crafty enough to spin a perfect argument for its justification. It was difficult to be angry or call him out on it, because it was incredibly hilarious, and in some twisted way, made a lot of sense. One particular event is the epitome of his life approach and has been retold numerous times over the years since my father passed. 

One year, my parents visited us in Colorado where they stayed at a nice hotel, maybe Country Inn and Suites, who served the typical continental breakfast each morning for their guests. My dad, more than anyone I know except Ian, loved breakfast, and food in general, so I assumed he and my mom enjoyed their muffins, cereal and coffee each morning at the hotel. A year later, when they returned to visit and stayed with us at our place, I learned that was not the case.  One morning my dad arrived back from his bike ride, but quite a bit later than we expected, so he missed my homemade breakfast.  This was a rare occurrence for the man who always helped himself to two servings at each meal, and used at least two tablespoons of butter for each piece of bread.  When asked why he was late, he simply looked at us and explained, “Well, last year we skipped the continental breakfast one morning at that hotel where we stayed, so I ate there this morning.  They owed me one meal. After all, I did pay for it.” Rumor has it, he boldly rolled his bike right into the lobby (with no key), feasted on the buffet and rode home – without giving it a second thought. 

There is no doubt that if my father was around today, he and Ian would be evading many rules together.  This one’s for you Dad!  HAPPY BIRTHDAY!  I miss you everyday.

Finger in Your Butt

Text from Ian’s Special Education Teacher: 

According to Ian, there are no rules that forbid ordering pizza at midnight delivered to your back window, dancing in the middle of a hockey game, or borrowing your mom’s money from her ‘secret’ drawer.  However, in high school, you should NEVER, “put your finger in your butt!” That very text inspired the following and reminded me of all of the mishaps, misconduct, and misunderstandings in our lives, courtesy of Ian.

 

 

What Filter? 

Most of the time, we all love the fact that Ian is uninhibited and seems to have no filter at all. We often envy his carefree, ‘say anything’ attitude about life and rules (thanks, Grandpa B).. With that said, one afternoon between hockey games, the parents were standing around enjoying  a few beverages between games. One of Ian’s coaches was sharing stories about Ian and what he pulls off during practices and games. Many of the tales revolve around the fact that Ian says and does things that the rest of us think–but would never act upon. He described how, at the beginning of each game Ian always made his rounds to the referee and opposing team’s players to ask if he might ‘get a goal’ or to secure his place in every faceoff. I am sure every other player would like the same treatment, but really?  Who does that?  One of the dads piped up and exclaimed, “That’s it! I’m just gonna live my life like Ian –  F*@k it!”  Laughter filled the room, and at that moment, we all decided that t-shirts and bumper stickers should definitely be ordered.  Entrepreneur Grandpa B. would have purchased and distributed those t-shirts – and promptly secured a profit.

What Are You Wearing Now?

In the last year or so, Chad and I have had the luxury of being able to leave Ian home, unattended, for short periods of time. For better or worse, Ian is always intensely engrossed with his video game, such that he hardly notices we left the premises. If we sneak off for 20 minutes while he is holed up in his room, in the midst of a heated Fortnite battle, he would be none the wiser. Still, I always worry that he might re-enter the real world and wreak havoc, maybe trying to cook a Big Nasty. Either way, we lose. Yet, he is nice enough to allow us to think he was an angel, as we often do not discover what mayhem he caused until later, such as Chad being unable to log into a computer the next day to work. Or, even a few days later, when Chad yells, “Where the hell did the 10 tortillas go that were in the outside fridge?” 

Despite what might ensue, we take the chance and head out for a daily walk. Upon return, I always do a quick check around and discover that Ian had changed pants from what he was wearing in the morning. Likely missed by the untrained eye, this is a subtle sign that something is amiss. Plus I have enough damn laundry on a weekly basis without Ian changing clothes mid-day.  

Caught with Your Pants Down

A play inspired by true events – unfortunately. 

Act I 

Scene 1

Narrator:  Mom is trying to be calm and rational, while coaxing son (Ian) to truthfully answer the simple question about why he has on different pants. 

Mom: “So in order for us to go out for ice cream tonight, you need to tell us what happened to the black sweat pants you wore all day. Why did you need to change?”

Stage direction: Sound: dead silence. Son (Ian) will stare into space as if not being talked to.

Mom: (Repeats the same question, but a little slower and a bit more agitated)  “So in order for us to go out for ice cream tonight, you need to tell us what happened to the black sweat pants you wore all day. Why did you need to change?”

Mom: (Decides to put words into son’s mouth otherwise this scene will drag on for what feels like eternity.) “Let me guess, we went for a walk, you played with a cat a little too rough and then threw your pants in the bottom of the closet to hide them.”

Son:  (speaks quickly and without hesitation.) “No, I didn’t put them in the CLOSET, I put them in the LAUNDRY!”

Stage direction: Mom is speechless, which if you know this character is a very rare occurrence. 

Son: Tilts head slightly and looks at mom with his usual smug “I won this one” grin.

 

High School Cafeteria Fine Dining 

Despite the amazing, healthy meals Chad prepares every night that end up in Ian’s lunch the next day, Ian insists that the school’s hot lunch is far superior to this gourmet cooking. Most kids probably open their lunch to a dry bologna sandwich, Cheetos and some fruit – aka fruit snacks. Meanwhile, Ian dines on a Korean pork bowl or Indian lentil soup accompanied with a side of naan bread.  To Ian, the act of walking through the lunch line and just grabbing everything in sight, is far more satisfying. Of course his teachers know Ian is only allowed one meal a day, but alas, he is a sneaky fellow. Ian quickly runs up a tab of over $15 before anyone even notices. Some days he eats the lunch we packed, so as not to raise suspicion, along with: two pieces of pizza, veggies, fruit, and a sugar-filled energy drink. Ian must think like his Grandpa B., figuring that he should avail himself of an extra hot lunch for each day he misses during the rest of the month!  My dad would be so proud.

Top 10 Rules According to Ian – Volume 1

  1. During a hockey game, if you want to stay on the ice, even though your coach is demanding  a line change, it is perfectly acceptable to skate as far away as possible, lo away and ignore everyone screaming your name from the bench.
  2. All  lines and other markings on the ice or soccer field are meant to be crossed at any time, for any reason, despite what a coach or referee might be yelling. In addition, playing multiple positions –of your choosing – in the same game is allowed.
  3. Purchasing a school lunch, when you’ve brought your own from home, and then adding on several additional, overpriced, a la carte menu items to rack up a bill is encouraged.
  4. When grounded from technology on home devices, secretly stuff your school Chromebook into your backpack, sneak it into the house, hack into it and watch girls wrestling.
  5. If you are mad, never use your words to explain, just take other people’s shit and hide it ( i.e your dad’s wallet, phone and tv remotes – all of them, at the same time).
  6. Never stick your finger in your butt at school, but it is always fair game at home or in public. 
  7. When biking, go wherever you want. The cars are watching for a highschooler on a Trek bike with training wheels cruising like a bat out of  hell – they will move. 
  8. Always make a midnight snack involving an enormous tortilla with a pound of shredded cheese and anything else that looks good in the fridge.
  9. The same rules do not apply to all settings. Feel free to pick and choose.
  10. Last but not least, always take advantage of a school lunch or a hotel continental breakfast if you missed one, here’s to you, Grandpa B.

We would love to hear about your stories of celebrations — the expectations and realities of these events that can rattle us, make us cry, and make us laugh, all at once. 

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Blog #28 Return of the Shenanigator

Part 1 : if you need to catch up!

Previous Blog #22: The Shenanigator 

 

“Just Deliver It To My Back Window” 

One evening last summer, Chad was covering patio furniture and closing everything up for the night when he saw a shadowy figure appear in our backyard. He watched closely and curiously, as the bobbing head moved around in the dark. Before long, Chad had made his deduction. The figure was, indeed, a Domino’s pizza delivery man traipsing through our yard, a large pizza box in hand.  Obviously this was a mistake Chad thought, as it was after 11, and we were heading to bed. Next thing Chad heard was a voice from the back window yelling, “Bring it over here …to my window!”  There’s Ian, head sticking out his bedroom window, urging the pizza guy to hand him the pizza.  I felt kind of bad for the delivery guy as he stood in the yard, the decision of whether to follow the unusual instructions of a loyal customer, or the rational inquiry from his father.   Chad continued to insist that we had never ordered the pizza, while Ian badgered him to bring the pizza to his window as quickly as possible. After all, when Domino’s received the call, those were the specific directions given by Ian. Domino’s didn’t seem to question it, so it makes me wonder if people often have pizzas delivered to their back windows, and if so, I’ve been missing out on something pretty amazing over the years. In the end, Chad quickly explained the situation to the very confused delivery man, and he headed off. Hopefully he was able to eat the pizza while on the way to his next– legit–delivery.

As is characteristic of The Shenanigator, the story doesn’t end there.  About an hour later, there was a knock on the door. Chad groggily climbed out of bed in his boxers with earplugs half in – definitely looking like an ‘old’ dad. He opened the door to find a Hudson police officer, stating that there has been a complaint from Domino’s for continued calls from his cell phone. Apparently Ian, who still had one of Chad’s cell phones, was not taking no for an answer. Immediately after his first pizza ‘walked away,’  Ian had proceeded to speed dial Dominos about a hundred times ( not an exaggeration) to request to have that damn pizza delivered to his back window. Credit must be given for determination, that’s for sure. 

But wait, there’s more. Moments later, Grace, who had arrived home after working downtown, walked up the sidewalk to find her father, half-naked, standing in front of what apparently is known as  Hudson’s “hottie” cop at our front door. I can only imagine all of the crazy thoughts that raced through her head as she approached the scene.  The good news is Domino’s did not press charges, and allegedly, they have notes on the Witt account to only take orders placed with a credit card. 

Or, at least that’s what we thought.

One Pricey Pizza

When you start your day with a text from an unknown number, sent at midnight, about a pizza you never ordered, you know Ian has been up to something.  

Upon waking, this text from Mason, otherwise known as “my Domino’s Pizza delivery guy”,  is the first one I see. I literally put my hand over my mouth and began to laugh out loud. I recalled the previous “please deliver it to my back window incident”  and wondered how this was even possible. Why is Domino’s delivering pizza, when clearly, they did not get a credit card for payment—or did they? My alarm bells began to ring. I immediately walked around the house looking for this supposed Domino’s box, which would typically be in the recycle bin – not hidden – as Ian is not the best at covert operations. Surprisingly, the evidence was nowhere to be found. All I can conclude is that Ian was probably grinning from ear to ear, scarfing his cheese pizza in his bed ( the box was still in there). Why wouldn’t one eat pizza? In bed?  At midnight?  

My next thought was where did he get the $80? He has his own wallet but usually has only about five dollars to his name. Money simply burns a hole in his pocket. The moment he has any green, he wants to spend it as quickly as possible -on a toy from Target that cost $30 (because that makes sense) or a new skin for Fortnite (of which he has far too many). I texted his math teacher to suggest that maybe a review of money might be a good idea.

Turns out, Mason is an upstanding delivery man who reached out to us to make sure to give us the extra money back. Chad thanked him for his honesty and compensated him well.  Ian was an amazing tipper in this instance. Other times, he may only have  50 cents, and in Ian’s world, that’s just as good as 80 bucks..

Jimmy Johns & the 50 cents:

Nick, Ian’s partner in crime, was hanging with Ian at our house one beautiful summer night. Of course, I will be honest upfront, Nick’s mom, Theresa, and Chad and I were not in supervisory mode this particular night. The boys had really grown up and had proven to be able to chill with each other without getting into too much trouble in the past. Well, we should have known better, after all, they have a sketchy history together of breaking windows while bottle flipping and crushing Nick’s glasses so he cannot see.

As parents do, who forget the children are inside, the three of us sat on our patio, chatting the night away sipping our drinks. We were oblivious to the master minds and what they were brewing just steps away from us.  Between bottles of wine, we made sure to lay out a feast complete with beef, potatoes, vegetable and milk – enough for 4 boys their size. But what we did not count on is that they are “growing boys,” according to Ian.  They simply needed more food, despite the buffet they had plowed through just a half hour earlier. So they -instigated by Ian for sure- decided to take it upon themselves to ring up Jimmy Johns to order more grub.  I’ll give them credit for making a great choice, as they are ‘freaky fast!’  While this mischievous behavior is going on, a few more drinks are poured and stories shared with no inkling of what’s being delivered to our door.

An hour or two later, we come back in, clean up and begin to plan the extraction- it is not easy to get these boys to say goodbye. As Teresa is gathering Nick’s items, she opens Nick’s bag and there inside is a full Jimmy John’s sandwich and a soda! Turns out Ian convinced Nick that they were still hungry, so they used Siri to call from Chad’s cell phone (perhaps Chad didn’t learn his lesson here to hide his phone) to order two foot-long sandwiches and of course two jumbo, sugary sodas.  

I can only imagine the look on the delivery guy’s face when the door opens, and there stands two devious looking boys, with extra chromosomes and big smirks on their faces, And the kicker, they only had 50 cents.

We would love to hear about your stories of celebrations — the expectations and realities of these events that can rattle us, make us cry, and make us laugh, all at once. 

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#27 Ice Dreams

I never fully realized the impact sports would have on my heart and soul – until this year’s hockey season.  But first, let’s go back a few years to a sport Grace embraced, which would unexpectedly lead to life-changing moments for Ian, and for me.

At 10 years old, encouraged by my love for the sport, Grace became interested in figure skating.  She quickly acquired the skills, loving every minute of being on the ice.  We hired an amazing coach who trained Grace to compete in numerous competitions and perform in skating shows around the state.  Ian would, of course, tag along when the family traveled to attend these events, so he spent many hours in ice arenas in awe of what Grace accomplished.  Ian has always emulated his Graceful Big Sister. In January of 2016, after watching her jump and spin many times, Ian decided he could do that, too. I recall Ian saying to me on numerous occasions, “Mom, I want to be in a show like Gracie!” I quickly agreed.

Although his first year involved crooked ankles, many falls, and slow progress, from the moment he laced up his skates, Grace was Ian’s biggest fan.  Her patience with his stubbornness and wobbly legs on the ice that first year was immeasurable.  Despite the challenges, she was always there to encourage him and to catch him if he fell.  After numerous ‘learn to skate’ sessions, one-on-one sessions with Grace and encouragement from his favorite hockey player & friend, Easton, Ian picked up a hockey stick and took to the ice as a Mite for the next several seasons.

This year, Ian was lucky enough to play on Hudson Hockey’s Bantam C Team. With hours of on and off ice training, late practices (arriving home well after I was tucked into bed), patience (oh, so much patience) and dedication from everyone, this season was nothing short of incredible. As an added bonus, many of the Hudson High School hockey players, who Ian admires, took the time to volunteer to skate with Ian at practices. 

Early in the Bantam season, we were losing to Orono, a Minnesota team, in the last period of  the Inver Grove Tournament. Out of the blue, the game stopped and the Orono players rallied with our team to assist Ian in shooting his first- ever goal. We may have lost the game that day, but what we all gained was priceless!  Later in the season, Ian attended an Orono game to cheer on his new favorite team from the stands.  Not only did they invite him into the locker room as if he was a part of their team, but they also presented him with an Orono Jersey that each athlete and the coach signed.  This is the true meaning of sports.

Then, to our surprise, a few weeks before the State tournament, Maury Glover, from Fox News Twin Cities, interviewed Ian, Coach Jim, and Chad about Ian’s illustrious hockey career-  ha!  The news team did an amazing job highlighting the importance of inclusion in sports, which will hopefully inspire others to do the same.  

To top off this magical season, Hudson Bantam C made the State playoffs, and, with the help of a few “Ian advocates,” WAHA (Wisconsin Amateur Hockey Association) made an age-exception to allow Ian to play with his team. Ian may be the first player with Down syndrome to play in a WI state tourney.

Now seven years after those first tentative steps on the ice, Ian took the first face-off, at the State Championship game!  His team proceeded to play their hearts out–and they WON!  Once again, his teammates selflessly allowed Ian to take over the spotlight as they handed him the State trophy to hold high for the victory lap.  As these moments unfolded, time stood still for me..  The feeling took my breath away.

Little did we know years ago that Ian would not really be ‘IN THE SHOW’ like Grace, but that he would “BECOME THE SHOW.”  When he wasn’t skating EVERY position on the ice, he provided the audience with much needed comic relief.  From his goofy antics, as he would spontaneously jam to a cool song, or smack talking with the referees – asking them to let him make a goal- you just never knew what stunt he might pull off in the middle of a game.  And I mean literally, ‘in the middle’ of the game!

Throughout this season, our four amazing Bantam coaches (especially Coach Jeff for all of the one-on-one time with Ian), the players (who he calls ‘his boys’), and their families, have embraced Ian wholeheartedly, never once treating him any differently than they would their own children. In the end, kids like Ian just want to be like everyone else.  Thank you all for SEEing Ian & making his Ice Dreams come true!

Previous hockey blogs

https://www.wittfitt.com/18-the-high-five/

https://www.wittfitt.com/a-stick-a-puck-some-love/

St. Croix Valley Magazine Dec, 2023

 

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#26 Birthday Pooper

Birthday weekend was upon us and there was an air of magic all around. Ian sprinted down the driveway and practically jumped into Grace’s arms. He had been anxiously awaiting her arrival for weeks. Asking me, probably every day, “Is Grace coming home, Is Grace coming home?” To which, again and again, I answered, “Yes, Ian. She is coming home specially for your birthday.”  As I watched from the window, with a tear streaming down my face, they hugged for a long time. Without a complaint, he willingly helped Grace shuttle bags and boxes to her room. So thrilled to have her home, he did not leave her side for hours.  

Ian requested that we order Chinese food and have our good friends over to celebrate. He was satisfied with no party, yet again this year due to COVID. Last year, his 14th birthday, amidst the beginning of the lockdown, ended up being amazing. This year’s small gathering proved to be just as much fun as any big bash we could have planned.

Ian greeted our friends when they arrived and despite gifts in hand, he waited patiently for everyone to gather in the living room to witness the gift opening.  He was given a gift card to his fav ice cream shop downtown and a personalized  Hudson Hockey jacket, perfect to wear to an ice cold skating rink while waiting for his practice to begin. Without being prompted, he gave his buddy a high five and, while saying a heartfelt ‘thank you,’ hugged the adults, and allowed us to take pictures donning his new attire.

We sat down together for a great meal, eating, laughing and truly enjoying each other’s company.  After dinner we all piled into our minivan, cranked some of Ian’s favorites tunes and headed downtown for sweet birthday treats.  

And that was only the Saturday pre-Birthday, as Sunday was the big day when Ian turned 15. After chowing down on the Birthday Big Nasty, he and Grace headed off to Caribou for his usual sister bonding time, complete with a sweet, mango smoothie.

Next up, gift time! Chad had worked, alongside the local bike shop, to build out a bike that would work for Ian’s growing body, and also accommodate his lack of balance, with the addition of rugged training wheels from his old bike. Chad covered the bike with blankets, and it was ready to be unveiled in the garage. As the door opened, Ian’s eyes lit up with sheer joy.  He swiftly uncovered his gift and immediately ran to hug Chad. Seconds later, with his helmet on, he was off down the driveway. I managed to snap pictures and videos as he whizzed by. The ride did not last long, as he knew he had more presents in the house. We all gathered around, as he slowly opened each one, saying thank you and enjoying each gift — many of which were additions to his new bike, such as special pedals and a bag for the back to carry his basketball. Ian asked to FaceTime with both sets of grandparents, so they would be able to share in the celebration. Score!

In the evening, as planned, the four of us listened to music, enjoyed some cocktails (or mocktails), listened to music and made amazing homemade pizza, ending the evening playing all of the games Ian could carry into the living room. Then Ian was whisked off to a spa night with Grace, where they would put on crazy colored face masks, laugh, and take goofy pictures. This time with family, and celebrating Ian’s birthday so blissfully, was just what I needed to fill me up until the next time we were all together.  

“Cut!  Take 2. Now let’s show the audience what ACTUALLY happened!”

As Grace pulls into the driveway for Ian’s 15th birthday weekend celebration, I announce her arrival. Silence. No response. 

Ian’s eyes are glued to his Switch game, and he barely makes a move. Grace walks in, expecting to receive a big hug from the brother who was so excited to see her, but instead, he did not so much as say hello. After she got settled in, Grace, Chad and I sat on the deck to catch up. Ian? He has not yet looked up from his device. We acknowledge that this is sometimes how it starts, as her arrival is new and different to him, and he needs time to adjust. We have all become accustomed to Grace being away, so this is certainty understandable.

He slowly warms up and maybe says a few words to Grace as the day goes on, but no big hugs or ‘I missed you’ comments. Our friends arrive and before anyone even knows what happened, Ian already has the gift card open, and he is about to tear into the other gift. We convince him to wait so we can all enjoy the moment. He loves his new hockey jacket, but I need to whisper in his ear to say thank you (not sure if he ever did). When dinner arrives, he is hell-bent that we all sit down and eat immediately, so we can head downtown for ice cream right after. As usual, the night ends around 8:30 or 9, otherwise we end up with a very overtired Ian the next day.

Though Saturday was a bit rough around the edges, Sunday, Ian’s actual 15th birthday, was a new day. Birthday morning arrived, and I was hopeful that the novelty of having Grace home and the unknown of the birthday celebration would have subsided. That was not at all the case. After being gone about 30 minutes on their Caribou date, Grace walks into the house, visibly angry and detailing how much of an ass her brother is. He complained the entire way to Caribou, was ungrateful, and kept opening and closing the window just to annoy her. Sad about how that turned out, I figured gift giving would change the sour mood, so we request that Ian come outside. He was hesitant at first but eventually agreed.  The garage door opens, Ian runs over, uncovers the bike and says, in a very sassy tone “You blew it Dad!  I knew it!”  No ‘thank you,’ no hugs, just a flippant boy ready to take off on his new wheels. The rest of the gift opening was similarly disappointing, as he ripped through gifts, acting as though he knew what he was getting. He refused to do FaceTime with family, and did not act overly thankful for anything – at least in that moment.

That evening, which was supposed to be family time with pizza and games, ended up being just Chad and me. Grace went off with a friend, not feeling welcome after the weekend she experienced with Ian, and he decided to watch a show and eat pizza alone. 

Although I would have preferred the first version of Ian’s 15th birthday recap, our reality can unfold quite differently. Knowing that Ian likes consistency and predictability, a birthday evokes a lot of emotions for him that I imagine are not easy to sort out. Once the surprises were over, and he was able to process and absorb all that had happened, he was ready and able to give Chad a big hug and express how much he loved his bike. I received an unexpected show of affection while taking pictures – in front of the special homemade sign I have used for the last fifteen years. Looking back on this birthday weekend, I will cherish the little things and once again, try to see life through his eyes.

We would love to hear about your stories of celebrations — the expectations and realities of these events that can rattle us, make us cry, and make us laugh, all at once. 

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#25 To Phone or Not To Phone?

HAPPY 15th BIRTHDAY IAN! 

Every year, a few months before his birthday, Ian requests that we start a list with his crazy ideas, so that we are prepared to fulfill all of his birthday wishes. I often catch him on Amazon searching for the next ‘big’ toy or watching product videos of a family blissfully playing some complex game – which, with our dynamics, is not a reality. Ian’s list entails items I already know are a bad idea, or perhaps cost more than I would spend on a luxurious spa day. For instance, a hundred dollar robot that Ian imagines following all of his directions, such as cleaning up his toys or packing his lunch (if this existed, I would have already purchased one). Or a crazy contraption that Chad will spend hours constructing that will either break within the first two minutes or collect dust in the corner of his room. The last thing I need is one more unused toy to clutter the house. Recently we have given him the best gifts ever – the ones that are invisible to us – like a fortnite battle pass (which the Easter Bunny brought this year) or a new game download for his Switch. However, in the past year or two, he has upped the ante and asked for his own phone. Not just any phone – an iPhone. 

After some research, I discovered many other kinds of phones on the market geared toward elementary children who are not yet ready for a ‘real’ phone. Most simple kid phones, or even a flip phone, look more like a glorified walkie-talkie and have limited options and no app selection, which would be perfect for Ian – at least in my eyes. However, these ‘babyish phones,’ as Ian would call them, would probably not suffice for our technology guru. Chad, Grace, and I have iPhones, and Ian has watched us with these magical mini computers for years; I believe our days of giving him anything but an overpriced device are gone. 

Ian is keenly aware that the majority of the kids in middle school have phones, and typically expensive ones, like an iPhone – which is still a crazy concept to me. I know he wonders every day why he doesn’t have a phone, as he observes kids making calls and texting as they walk down the hall after school. Chad and I have discussed this possibility for his 15th birthday, but the cons outweigh the pros. Just at the time we were considering it – as if the Universe was sending us a sign – we were quickly dissuaded based on a continued inability for Ian to simply PUT THE DEVICE DOWN. Often, when it is time to head out the door to school or brush teeth and hop into bed, he is engulfed in a Pokemon battle that simply cannot be paused. He, like most kids, tunes out the rest of the world and loses track of time. The bus might be sitting in the driveway, but that does not compel him to move a muscle. This is when, after a few prompts, we need to intervene by tapping into our devices to shut his games down. If he had his own phone, I can picture him grabbing it, as he hands over the locked iPad, to start up another round of his favorite game. So, instead of preparing one of our old phones for his use, our energy was directed into researching ways to lock Ian’s ipad and figuring out how to set limits on his Wii and Switch screen usage. These challenging scenarios all signal that, while Ian may be ready for a phone, we are not.

Another compelling reason to wait to put a phone in Ian’s hands is the ability for him to call anyone at any time – with 911 potentially being the call of choice. Over the years, he has managed to swipe one of our phones, call 911 without us knowing, and sure enough, an officer shows up at the door. We have discussed how 911 is strictly for emergencies only, yet what constitutes a dire need for a police officer is quite different in Ian’s eyes. When asked, Ian replied that he simply wanted to see the officer and say hello…in person! 

Adding a new device to his technology repertoire will become necessary, as he is growing up, and a phone will allow for communication and freedom. Eventually, I know that Chad and I will be able to survive him having a phone – and it may even be helpful for us, but first, Ian needs to show some maturity and the ability to listen to instructions, put down a device when asked, and communicate, as opposed to going into silent mode. Then the next step, like most everything else in Ian’s life,  will be the need for extensive training, and by that I do not mean navigating the phone. That, he could do with his eyes closed, and likely better than any of us. I am referring to learning appropriate uses for a phone, such as: knowing (and honoring) what time is acceptable to call someone, putting the phone away during school hours, and when he should – and should not – dial 911. This path will include his special education teacher, who will incorporate this new phone into his functional skills class curriculum, and will be key to his success. Ian will take this learning more seriously knowing that his teacher, and not just his parents, insists on phone rules. Likely, this will require a specific game plan with set hours of use, supervision for the first few months, and probably an additional reward chart as incentive for using his phone as it is intended. We are so thankful for the ability to connect home and school in such a helpful way and having partnership in guiding him with these milestones.

For his 15th birthday, which is today, his big gift is not a new iPhone, but rather a custom-built bike with big tires and rugged training wheels. Though it is not technology, he will be thrilled with this new mode to escape the house! I am hopeful that when he turns sixteen, we will wrap up a shiny, new iPhone – well, more like one of our old ones – and witness his success using it. For now, my worries are directed toward his new hot rod taking him too far from home when he simply rides off without asking. At least we have tracking on the bike, combined with the comfort that Ian has many fans, our friends and neighbors, who often call or text us to say, “we saw Ian cruising down the street alone and we wanted to make sure that was ok?” Despite my fears as he bikes off on his own, this new set of wheels allows him a kind of freedom he rarely experiences. Even if it’s not an expensive iPhone- it is priceless to him.

 

Do you want to send a Birthday Wish to Ian? 

Scroll down and click COMMENTS below & leave one.

He would LOVE it!

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#24 I Need a Vacation from Vacation

When the four of us reminisce about all of our crazy adventures, formerly known as vacations, we all agree that many of our fondest memories are of times that did not go as planned – mostly due to Ian’s shenanigans. With each excursion, Ian steps out of his comfort zone a little more, and we learn as a family what to do better next time. Sometimes I am lucky enough to enjoy an hour to myself to drink coffee and read a book. 

My concept of a vacation is to venture far away from our comfortable environment to explore places that are unique and different. We usually seek experiences that are unlike our day-to-day life. For Ian, however, he would prefer to magically relocate our house, the three cats, and all of his belongings to a beach in Mexico. He would have the safety net and comfort of feeling ‘at home’ while exploring his new surroundings. With his expectations in mind – if it wasn’t for Chad reminding me how fun vacation is once we arrive –  I might never want to travel with Ian. The reality is that parenting Ian is challenging whether we are at home, or away, so we may as well be in paradise while the circus unfolds. 

The first few years of attempting the Witt Family Vacation meant making sure Ian had some of his essentials such as: ingredients for the big nasty, the same cup he uses at home for vitamin powder drinks, and of course, WiFi, so he is able to use every electronic device that he can fit into his backpack. This may all sound quite accommodating, but a ‘happy Ian’ makes a ‘happy vacation’ for all of us.  

Many families spend time planning for and researching their vacation – from deciding on the destination to selecting which airline to fly. However, with Ian along, there are many more layers to consider. Packing our house, as Ian might prefer, is not an option, so the accommodations are of utmost concern, and we often spend more money for the ideal set-up. Ian is an early riser and a rowdy sleeper, so the best case is we have three bedrooms. If not, Chad and I take one for the team and happily bunk with Ian to allow Grace to have her space. Even if we need to endure Ian’s snoring and early rising, it is worth it for family peace.

We also need to take into account all aspects of the property where we are staying – for safety reasons. We try to avoid elevators: they are prime for Ian to push buttons, wander off on floors that aren’t ours, and get lost. We have re-learned the elevator lesson the hard way…several times. It is not unlike him to bolt from the room and hop in an elevator before we can reach him. This is Ian’s ultimate hide and seek, and it is my ultimate nightmare. With no way to lock any door to safely secure him inside of a bedroom, like at home, we need to consider the layout, his proximity to us, and any potential Ian escape routes that could be unsafe — such as ways he can get to the pool or lake without us knowing. With all of this in mind, there are no remote islands or cabins deep in the forest in our immediate future.  No Wifi, what? Are you crazy?

Planning the trip is just the beginning. 99% of the time, Ian refuses to even get in the car, but at least he’s predictable. We plan, we pack, and we talk extensively with Ian about the upcoming trip. While he is always very excited for the weeks leading up to departure, the moment we need to leave, he firmly plants his feet and refuses to walk out the door. When he was younger and his communication skills were not developed, we had no way of understanding this reaction. We often ended up angry and stressed, not realizing Ian was simply nervous about leaving and not knowing what to expect when he arrived wherever we were going. 

Thankfully, Grace often became the creative one and, with supplies in the car, would make a fake ‘travel ticket’ for Ian to play with, all in hopes of him hopping into the car on his own. This worked many times, but once in the car, the next issue awaited – the dreaded seatbelt. We are thankful for the invention of a plastic contraption that hooked on the seat belt to stop Ian from breaking free, however, he was too clever, and that didn’t last long. One time, we had to duct tape the seat belt to the buckle to keep him safe. However, I recall thinking that if we had an accident, we may have some explaining to do, at best, and a true emergency getting him out, at worst. On many road trips, we actually allowed him to move around without a seat belt. This caused another set of issues, including Ian rummaging through Grace’s stuff, crawling into the back seat, or trying to watch a show Grace was happily watching on her own. Grace hated the idea of Ian being able to break the rules, but often, there was no other option unless someone was willing to sit on him. 

In those moments, I wanted to duct tape his entire body to the car seat. I would calm myself by thinking back to the 70’s when we grew up. We all laid in the rear of station wagons, sans seatbelts, the entire distance to Florida, and we survived. Quickly, I am brought back to modern times, when – despite my extensive organization – we discover that the headphones are broken. This means we will be subjected to listening to Power Rangers on high volume. And  worse, there are no shows available  because I failed to double check the Netflix downloads. This is going to be a long car ride. And there is no wine.

After everyone has time to relax and breathe, while Ian uses up all of my cellular data to watch some crazy reality TV show, we are potentially on our way to bliss.  However, if our destination involves being around other vacationers, bliss is not the word I would use. For most families, knowing that new playmates will be around, either planned or spontaneous, is ideal. The kids go off for hours on end, and the parents enjoy adult time. Unfortunately, we learned early on that being around other people causes undue stress, not only for us, but also for the other families we meet on vacation. 

Ian is a social guy, so right away he jumps into the activities others are enjoying, as if he is part of their family. I admire his confident, outgoing nature, but he is often unable to sense any social cues, such as when a family may want their alone time, or when they are done participating in the two-hour ping-pong tournament, with Ian as the ringleader. This presents uncomfortable situations for everyone. Chad often tells me to just let it be and that Ian will be fine, but I hate the thought of another family trying to relax and thinking, ‘what the heck, these people need to watch their kid.’ They can clearly tell that Ian has Down syndrome, but we never know how much experience they have and  what, or if, we should explain. After all, they are on their own vacation and certainly had not planned on entertaining another kid, especially one who is somewhat demanding of their time and attention. I have learned to let go a little in hopes that they will inform us when they have had enough. Other times, Ian clearly overstays his welcome. I immediately feel the need to apologize, explain Ian’s idiosyncrasies, and attempt to coerce him to come back to be with us – which is close to impossible without some bribery.

Ian may not like spontaneity, but he sure provides it for us. On most every trip, the unpredictable nature of Ian’s moods can put a damper on things. He may be putting his shoes on excitedly, and then all of a sudden he refuses to leave for an excursion. Or we could be having an enjoyable time at the beach, and out of the blue, he stands up and walks away. We can’t force him to stay, and we have very little leverage, with no way to enforce a time out or take away items as we would at home. Often this results in needing to give in, pack up, and go – ultimately, leaving us frustrated and surrounded by tension.

We have had many incidents that pushed us to the brink and introduced the term ‘shit-cations’ to our vocabulary, or maybe it was this trip, when Ian was six, that coined the term.

On the majestic shores of Lake Superior, Ian decided to drop a massive load in his pants – when in theory, he was potty trained. We had to change him right there, as he immediately, without hesitation, pulled his pants down and refused to budge until he was clean. This was the same trip when he chucked a wet diaper out the window on our drive to the North Shore and decided to take some pictures with my $1000 camera in his undies.

 

Speaking of pictures, when Ian was 13, we ventured on an out-of-country road trip to Canada. Grace’s good friend, who happens to be a talented photographer, accompanied us, so I was excited to have her capture the perfect family photo. However, Ian refused to uncover his face with his hands, so the family snapshot looked like this. Once I was able to let go of what I envisioned, I realized that I actually love this image even more than if he had cooperated. It captures the essence of our life at times with Ian. It is raw and real and true!

 

 

In addition to the Canadian stamp in his passport, Ian has been to Mexico four times. Each trip has been nothing short of magical, with the exception of a few train wrecks. Like the time I returned from a beautiful, long jog on the beach. Exhausted and hot, I recall being glad to be back to eat and stretch. However, Ian (age 13) had another idea. He figured it was time to get in his workout, too. My attempts to convince him to wait until Chad returned were fruitless. He promptly put on his shoes and headed out the door. There was literally no stopping him. So there I am, sore, tired and admittedly crying, as I followed him through the streets of downtown Sayulita. Looking back now, that event is hilarious. I would trade a busy work day anytime for a walk, even following aimless Ian, down the streets in a small town in Mexico. 

What blissful adventures have you had with your loved ones? I’d love to hear about your memories, turning lemon into lemonade, and any tips/tricks you’ve discovered through the years of traveling.

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#23 Don’t Stop Believin’

Waking up on Easter morning with everything in its place, I open my eyes to an animated Ian – just what I need at 6 am. Despite that he is almost 15 and starting high school this fall, Ian views life through the lens of a little boy. With incredible enthusiasm, he bounds through the house searching for the plastic eggs hidden in unusual places by the Easter Bunny. Of course this is no challenge for the ‘Hide and Seek Master,’ as he easily locates every egg in record time, and proudly announces,  “Wow, Mom, that Easter Bunny is good, but I still found all of them!” 

Every colorful egg contains a quarter, maybe two. As if he won the lottery, Ian spills each one onto the floor and counts his loot. I see the wheels turning, and I know exactly what is coming next. Before he even gathers all of the coins, he heads down the hall for his wallet. While walking away, he yells back to me, “Mom, can we go to Target right now so I can buy a toy?”  Translation: “Can we drop everything, go to Target, stand in the toy aisle, debate for an hour and spend my $2.50 to buy a toy that really costs $20.” Yes, we are still working on the concept of money. Though he still has an overflowing Easter basket to explore, he is quickly obsessed with the next new, big toy he can buy. 

I love the fact that we are still able to pretend that special holiday treats are magically delivered to our house in the middle of the night. I remember when Grace, like all kids around eight, realized that I was secretly playing the roles of Santa and the Easter Bunny. My emotion was a mix of sadness, as this meant my little girl was growing up, and a sense of relief that now we would be able to talk about it. Luckily, I continue to have a Mom’s luxury of being Santa and the Easter Bunny. And an added bonus:  Grace has become my accomplice, and together, we assume these fictitious roles for Ian’s joy. 

There is no logical way the Easter Bunny could drop off eggs to everyone’s house around the entire world, yet Ian maintains his strong belief that the Bunny will visit and maybe even bring him a Fortnight Battle Pass. The key word here is ‘logical.’  This type of reasoning, that will eventually bring his beliefs into question, is not yet developed for Ian. We assume he is capable of understanding these concepts at some point, but his brain is developing through these stages at a much slower pace.

This notion came to light recently when Grace called me from school one afternoon. I immediately heard the excitement in her voice, as she began to explain how a particular chapter in her Human Development course helped her make sense of much of Ian’s crazy, and often unnerving behavior. As she read from this chapter, I remembered taking that class at UW-Madison more than 30 years ago, yet I had never related it to Ian. He may be able to perform multiplication or understand a complex video game, yet on the flip side, he is not yet in the concrete operational stage. According to Piaget, “between 7-12 years old children enter the “concrete operational stage” of thinking — understanding the world through logical thinking.  They are in an observant phase of questioning impossible things.” As a teenager, Ian should be well past this stage, but the reality is he hasn’t even entered it. With the knowledge that his brain prevents him from some of the logical thoughts we wish he had, I hope we are able to have a new way of approaching Ian’s behaviors before quickly becoming angered or frustrated. For instance, when he is unable to keep a secret (as he is not able to think of others’ feelings yet), or when he expects us to be able to build something out of cardboard that is not structurally possible (as he is not yet able to understand the limitations of certain materials). For now, I will enjoy the innocence of this time, knowing eventually he, like Grace, will grow out of it.

The day will most certainly come when someone will try to explain to Ian that the Easter Bunny and Santa are, in fact, make-believe. I guarantee he will likely  think they are crazy, or he might say, “They didn’t visit your house because you were naughty.” I have never witnessed any moment of disbelief from Ian, and why would I?  In his mind, superheroes exist, and he will fly a Fortnite glider to school, when I buy him one, that is. 

I must admit, I love having a teenager who is growing up in many ways, yet still often lives in his world of make-believe. I can easily picture him asking to apply for the Easter Bunny job when he grows up, so he can perform the job better than the current magical character (a.k.a. me/Mom). I know for sure he would add a lot more junk food to the basket.  And I also know that it would not be out of the realm of possibilities to ensure a delivery of a hot, delicious Big Nastys to every household on Easter (or any holiday imaginable)! 

 

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#22 Shenanigator

Shenanigan, according to Merriam-Webster, is defined as: a devious trick used especially for an underhand purpose; tricky or questionable practices or conduct; high-spirited or mischievous activity.

Shenanigator, a made up word I found on Pinterest, is defined as, “A person who instigates shenanigans.”

Ian challenges us daily, but at least life is never boring with him around. ‘Shenanigator’ may not be a real word, yet it fits Ian perfectly. Though most of his crazy antics were definitely not funny at the time, recalling them always provides comic relief.  All kids push limits and try to get away with things, however, Ian takes it above and beyond. 

Ian’s sister, Grace, recalls, “We were all getting ready for Halloween night and you wanted to get a photo of me and Ian, who was eight at the time. When we weren’t looking, Ian darted out the door. We knew he didn’t know his way by himself, so we ran around the entire neighborhood searching for him. Meanwhile he was just sitting on the doorstep of the neighbor’s house, in his costume, not a care in the world. You were in tears, and I was terrified because it was dark out, and he was so little.” Halloween is scary enough, and we surely didn’t need any extra tricks. 

Sometimes Ian’s shenanigans involve not only Grace but one of his personal care assistants (PCA), too. Even with double the supervision, he still finds a way to get into trouble– and enrage Grace at the same time. Ian, at the age of ten, did something that Grace thought he would only tease about, as he should have known better. Unfortunately, he did follow through as she explains: “Tucker was driving us around our neighborhood when suddenly Ian snatched my new phone right out of my hand and was playing around. Before I knew it, he helped it over the open window, smirked at me, then dropped it. You can only imagine what the phone looked like once we pulled over and retrieved it face-down from the curb.”

Several of Ian’s Shenanigans apparently happened with a PCA when I was not around. Only recently has it come to light – while writing my blog and book – that I have never heard some of these funny stories. Our PCAs must know that this is likely better for all involved, as I would probably freak out, and perhaps start to rethink if anyone is truly qualified to watch the Ultimate Shenanigator.

One such incident involved Ian – with no pants. To this day, he prefers to be naked or wearing minimal clothing, such as no socks all winter, so this occasion should not have come as a surprise. Though he wore a seatbelt and a harness on the school bus, he still finagled his way out on multiple occasions. However, on one particular day, Ian could not simply escape. Apparently, he had to resort to drastic measures. Josie, a PCA when Ian was in 5th grade, recalls this hilarious story:

“I walked outside to get Ian off the bus, and this girl, who loves to give reports on how Ian was on the bus, was standing at the front ready to share, ‘You are not going to be happy with Ian. He was not wanting to wear his seatbelt, or his harness, so he took his pants off! And they are still off now.’ I envisioned the worst: Did he take his underwear off too? Was he naked? Thankfully just the pants were off. As I got Ian off the bus wearing just his underwear, I remember being shocked and surprised; I could do nothing but laugh. Who thinks to take their pants off on the bus because they don’t want to wear their seat belt? Only Ian.”

Despite the abundance of Ian’s traveling shenanigans (whether by bus, car, or on foot), often his monkey business is prone to happen here at home, directly under my nose. He knows I dislike hide and seek – especially while I am trying to focus on work –  yet Ian has loved this game for years. He has challenged every PCA to play and seems to find some pretty unusual places to hide. “With Ian you can never be entirely sure what he’s going to do next. Even a game of hide and seek would turn downright silly when I’d discover him in the weirdest spots… like with his legs sticking out of the washing machine,” recalls Molly, one of our first PCAs. We still thank our lucky stars that he did not get stuck or close the door on himself. 

Other times, a hide and seek game becomes a running event, as Noelle shares: “One time we were playing hide and seek, and Ian decided to open the garage, and start running! I chased after him for probably 3/4 of a mile. When I asked why he ran away, he said it was because he was mad at me for not driving him to Sky Zone.’  I was 14.” Instead of initially expressing himself by using his words, which is still difficult for him, or thinking through Noelle’s age and ability to drive, he simply used his legs first. Good thing Noelle is in shape, runs track and plays soccer. Have I mentioned that one of our criteria for being PCA for Ian is to be in peak physical shape and prepared for anything. Connor, who was quite challenging for his parents during his teen years, was put in an equally demanding position with Ian one day. He learned the hard way, you can never really be prepared for an Ian escapade. His mom Kathy hilariously explained this incident, and I am guessing all she could think was, ‘Ah, karma!’

“Connor explained that he and Ian had gone into Ian’s room to play a game. While Connor was setting up the game, Ian got up, went out of his room, and shut the door. Connor presumed he was going to use the bathroom. Then the lock clicked. (Ian successfully used the lock installed on the outside of his door to keep Connor safely in his room, instead of the other way around.) Connor jumped up, and sure enough, the door was locked. He could hear Ian outside the room laughing. Connor said that he tried to coax Ian into opening the door so they could play their game. That didn’t work. Then Connor flat out said, ‘I’m not gonna lie, I was in full on f*!ki#g panic mode. The last thing I wanted was for Chad or Lisa to come home and find me locked in Ian’s room. That would suck!’  So, Connor opened Ian’s window, crawled out, and ran to the back door. As soon as Connor  got to the door, Ian was already there laughing. He locked it, too. Next, Connor ran to the garage door, which was locked at the top with the security lock (ironically to keep Ian in). Connor was able to open the door just enough, and when he looked inside, he could see Ian sitting on the couch reading a magazine. Connor said he was struggling to calmly ask Ian to please come unlock the door. He tried everything he could think of to get Ian to come over and let him in. Ian just laughed and waved, ‘Hi, Connor.’ When he realized Ian wasn’t going to unlock the door, Connor took his ID out of his wallet and was able to jimmy the lock. When he got inside, while Connor admitted that he wanted to yell at Ian, he was able to keep it under control and say: ‘You are SO in a time out right now!’”

Even after reminiscing about all of these funny stories, I am barely scratching the surface on this topic. PCAs have recalled stories of losing Ian at the zoo, crawling under dirty bathroom stalls to retrieve him, paying for a drink he ran off with at the apple orchard, or trying to remain calm when Ian emptied the sand from his shoes in the beautiful J.J Hill historical mansion in St. Paul. I must give Ian credit, as he taps into his clever mind and wild imagination every day. At least our days are filled with surprises having the Ultimate Shenanigator on the loose.

If you have stories to share about your kiddos, or if you have spent time with Ian and have a ‘shenanigans’ story to share, we would love to hear it!    To do so, please scroll down to the bottom and click “COMMENT” right next to the date.  I am guessing I may hear some stories I have not heard before – ha!

 

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#21 This is ME!

“There’s no greater disability in society,
than the inability to see a person as more.”

-Robert M. Hansel

 

On World Down Syndrome Day, I dedicate this blog not just to Ian, but to all of those individuals with different abilities who teach us more than we could ever teach them. The world is a better place because of all of you.

Thank you to all of the friends, teachers and personal care assistants (PCAs) who shared what they have learned from Ian, and how he has inspired each and every one of them. 

These accolades for Ian not only highlight how he has impacted those in his life, but how all people with disabilities have unique gifts only they can share with those around them.  We simply need to give them the chance to shine.

If you know someone with Down syndrome or any special needs, reach out – in any way – to say how much you value him/her as a person. It would mean a lot to us.

 

Ian loves looking at pictures, so I created this special video for him and I thought I would share it with all of you.

 

All I really need to know I learned from kindergarten Ian

This is Ian’s version of the well-known book that highlights the simple ideas we should adopt, in this case from Ian, and apply to our lives as adults.

 

♥  Use your imagination
♥  Anything is possible
♥  Celebrate even small accomplishments
♥  Enjoy the little things in life
♥  Be silly
♥  Embarrass yourself
♥  Raise the bar
♥  Just have fun
♥  Never quit
♥  Focus on the good things
♥  March to your own drum

 

“I am forever thankful for that boy. Ian has taught me more patience than I never knew I had.  He taught me it’s ok to embarrass yourself, it’s ok to sound silly, be silly, and to use my imagination! He taught me not to quit or give up but to find different ways of learning or doing anything. He also taught me to take a breath and just have fun!!”  

 

“I think it’s safe to say I learn a lot from all of the children I work with–past and present. It definitely seems cliche to say that Ian has taught me to enjoy the little moments and celebrate the small things. Progress can’t always be quantifiably measured; sometimes, we simply need to celebrate the lessons learned through the first simple sincere apology or the first time a typically developing child asks our children to play a game or be on their team. Ian reminds me to smile and be silly often.”

 

“Through hanging out with Ian he has taught me how to enjoy the little things in life as well using your imagination. He has also made me realize the importance of empathy and communication. I have become a lot more aware of how those two things can enhance the relationships you have with people in your life. And definitely being thankful for parenting and appreciative of my parents.”  

 

“If Ian can do these things that he is not ‘expected’ to do, then so can I. I can push myself outside of my boundaries to achieve my goals. I can move beyond my expected limitations.”  

 

“Inspiring. After knowing Ian for all 13 years of his life this word fits him perfectly. His personality makes anyone think, “I can do it”. The first time I experienced this was watching him run cross country. He may not have been the fastest kid who ran the entirety of the race but watching him cross the finish line was one of the most inspiring things I have seen. Nothing can stop that boy from doing anything he sets his mind to in sports and life.” 

 

“Ian reminds me how important the little things are in life and to celebrate each accomplishment no matter how big or small. Ian has impacted the way that I view goals and how we can do anything we set our mind to, no matter how impossible it seems or what others may think. He pushed me to grow in areas that I would not have without him such as being assertive and standing my ground.”  

 

“I have learned to slow down and not take such little things for granted.  I’ve learned that my problems are so small, and if my buddy Ian can get through a tough day with a smile, so can I.” 

 

“Ian has also taught me that even in my own job, I can be both a teacher as well as a student. Ian had a creative and quirky approach to obstacles and events that would have never occurred to me. This willingness to forgo norms often made our time together more interesting, and truthfully, much more fun. Working with Ian definitely helped me gain a sense of confidence and independence that I would not have had we never met. Ian has certainly inspired me to march to the beat of my own drum, loud and proud.” 

 

“Ian has definitely had a huge impact on all of my students at Augsburg University. They understand that it’s truly a tag team effort (Lisa, Chad and Grace) at home.  Everybody has their role, time and place to be in Ian’s corner. They also learn to have high expectations for all students they will be teaching and to not put labels and/or limitations on any student.” 

 

“I have learned that anyone can do anything they set their mind to, and I have learned that life is about focusing on the good things.” 

 

 “Ian taught me how to appreciate all the small things that can get overlooked. Ian is always in the present. He takes the moments as they come and it was the best lesson I ever learned.” 

 

“Ian has many ideas that seem crazy or don’t make sense to typical people. But he rarely believes things are impossible, which is a point of view we need to value and challenge ourselves with. In a recent example, Ian wanted lemon sherbet, but there was none and his efforts to get Lisa and Chad to drive him to get it, late at night, were failing. So he asked if he could get out the vanilla ice cream in the freezer and squirt lemon juice over the top. All the adults in the room cringed at this “bad idea,” and knew that the result would not resemble lemon sherbet and Ian would not like it. His request was refused. In retrospect, we should have let him do it, and now we are all curious what it would taste like.”

♥                          ♥                        ♥     

Here is Blog Special Edition #20 if you missed it.

Happy World Down Syndrome Day to all!

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