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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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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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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“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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“My view of Down syndrome has been very clear since I could understand what it meant. Growing up around Ian has made my view very concrete. I know it is a congenital disorder by definition but, in my head, I see it more as a blessing. The world needs people who have such a positive, optimistic outlook on life the way Ian does. With that, I choose to view Down syndrome as a disorder that can bring happiness to people, the way Ian has for me.

~written by long-time friend and PCA of Ian’s.

♥                          ♥                       ♥         

  

In honor of World Down Syndrome Day – tomorrow March 21st – my blogs for this weekend are dedicated to Ian and all individuals with Down syndrome. For those who may need it, here is a refresher on the significance of the number 21:

Down syndrome or Down’s syndrome, also know as Trisomy 21, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21.  It is usually associated with physical growth delays, mild to moderate intellectual disability, and characteristic facial features. ~Wikipedia.


When Ian was diagnosed, I knew very little about Down syndrome, nor about its name. I remember those first few days, hearing the words Down syndrome, and feeling sorry for him, as if somehow his life would never have any meaning. A sense of hopelessness washed over me, as the word ‘down’ echoed over and over in my mind. Why was his disability labeled using a word that the dictionary described as “to a lesser degree; or in a lower or worse condition or status”. (Merriam-Webster)  This meaning affected me more than I realized. 

Despite the way these words made me feel, this extra chromosome disorder was not named to put this disability in a negative light, but rather, to honor the English physician, John Langdon Down. He was the first to accurately describe a person having the characteristics of Down syndrome. It made perfect sense to name the syndrome after the doctor who identified the criteria. At the time, I am sure nobody gave this a second thought. 

Changing the term Down syndrome to a different name wouldn’t alter the pace at which Ian learns new tasks, nor would it impact his behaviors or social graces; but understanding how words can inform our perception of a person’s abilities allows perspectives to shift. Would I have felt more assured that Ian’s life would be okay if the doctors had said, “Ian has Sunshine syndrome”? As silly as it sounds, yes – because words matter and names carry weight. The vibration and energy surrounding Ian’s labeled diagnosis would be uplifting and positive. When I hear the word ‘sunshine’ it evokes images of a beautiful light streaming through the trees, just as Ian’s light streams through the world, showing me life in a unique way. 

Before Ian came into our world, not only did I have limited knowledge, but I also had never had the opportunity to meet anyone with Down syndrome. Now, after almost fifteen years of being immersed in this world, I am profoundly aware of the way in which people with Down syndrome, or any other disability, are identified. I assure you that pre-Ian, I would not have thought twice about saying ‘Downs child’ to refer to an individual with Down syndrome. Most people who refer to Ian as a ‘Downs child,’ or someone who refers to one of Ian’s friends as an ‘autistic boy,’ are not trying to be demeaning or hurtful. However, when a person is being described using their disability first, all of their amazing traits are overshadowed by that one word, or label, often making the person unrelatable, or even someone to feel sorry for. One singular word could never come close to defining the entirety of a person and often leaves the impression of disability, rather than a person having differing abilities. 

Imagine a 50 piece puzzle representing Ian with just one of those pieces being Down syndrome. Just one. All of the pieces are needed, but no one takes up more space than the other. No one part defines the puzzle. Each piece is necessary to complete the picture, and they are all equally important. Ian is Ian. I do not see him as a Down syndrome child, but rather an almost fifteen year old who is funny, stubborn, sweet, mischievous, energetic, and he just so happens to have Down syndrome. I wouldn’t change any part of him even if I could; the puzzle of Ian would not be complete otherwise. He would not be the Ian I know and love.

 

At first . . .

Down syndrome draped over me. 

It permeated every cell of my being.

 Consumed by what it meant in the moment, 

and what it meant for years to come. 

Eventually Down syndrome 

settled into the background of my life. 

I slowly began to accept, absorb, 

and ultimately cherish

 what once felt 

far too heavy to carry.  

At last . . .

As each day passes,

 I see beyond his disability 

And I am blessed to witness 

Ian’s layers 

Slowly peeling away 

revealing 

a goofy boy,

a spirited son,

a crazy hockey player, 

a sweet brother

And a ray of sunshine.


*We are all learning along the way regarding the language we use to speak about people with disabilities, especially considering its ever changing nature. People may think since we are parents of a child with special needs, that we have it all figured out, but speaking for myself, that is far from the truth. Even in this article, which I referenced in a previous blog, the author states that the term ‘special needs’ may be viewed as condescending or negative. Each person has their own view on this term, however for me, I prefer this to describe Ian.  As I see it, he does have needs that require special care or special attention.   

As I write each and every blog, I continually strive to be as sensitive as possible, while still being candid and honest about our life with Ian. Every family has their own views and opinions, so I would never attempt to speak for others who raise a son/daughter with different abilities. I am only sharing our perspective of having a son with special needs.*

VIDEOS:

Video to help kids (& adults too) understand Down syndrome:

Video by people with Down syndrome: Just Like You!

Sources:

DSRF

CDC info

NDSS website


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Alice: This is impossible.

The Mad Hatter: Only if you believe it is

~Alice in Wonderland

 

Many ideas for Ian’s future job have been tossed around over the years, usually at the dinner table. Though he is not a big conversationalist, like me, discussing his future profession always brings out his talkative side. Immediately, he is excited to share every wild idea that pops into his brain. We have entertained the occupation of scooping ice cream at the local shop downtown that he frequents, being a firefighter or even a superhero. Why not? Superheroes do exist. After all, I am Wonder Mom. The beauty is, in his mind, there is nothing he cannot do. The options are boundless, because he only acknowledges the reasons he can do something as opposed to any limitations that may inhibit him. I sometimes wish a little bit of that naive confidence would rub off on me when I find myself doubting my ability to try something new or venture outside of my comfort zone. As I listen to him explain how he could be both the chef at the fire station, serving up Big Nastys, and the firefighter saving a burning building, he reminds me that in order to really see the possibilities and dream bigger, you need to look past the obstacles. Listening to him rave about his crazy ideas, it’s as if I have been transported smack dab in the middle of a Disney Pixar movie. I smile, nod, and ask more questions, to see what other hilarious things he will say, with his very intense and serious demeanor intact. When I hear his witty responses, it makes life so much lighter and full of hope.

Although fighting fires, or being the newest version of a superhero (because yes, that is a profession in Ian’s world) are still viable options, more recently, Ian has honed in on his ideal career: a special education teacher. I can see why, based on the amazing role models he has had, both in elementary and now in middle school. Of course these educators simply make the job look fun and easy. When asked why he would want to teach special ed, Ian enthusiastically explains, “I get to carry a walkie-talkie to find kids around the school if they get loose.” To Ian, I suppose this is one big game of hide and seek that he would be paid to do.

When any of us think about our career choice, we often look for jobs that not only utilize our strengths, but we often pursue a role with which we easily identify. For Ian, it seems to be second nature to detect when his classmates are struggling or are upset for some reason. Most likely this is true because he is aware of what causes him to struggle at school. I believe his deep need to help others stems from how discouraged he feels at times when he cannot complete a task, or when he feels misunderstood. Ian has a unique perspective, living with his own challenges and is able to authentically relate to others with Down syndrome, or any other disabilities. When asked about his classmates, he is quick to identify why each of them is in this special classroom, yet when I asked him why he was in that same room, he casually replied, “I am a helper to the other students.”  He has not truly acknowledged that he is in the special education room for a reason. Perhaps this is true, because a cognitive disability, like Down syndrome, is not visible to the eye, so Ian doesn’t ‘see’ that he has any disability, as opposed to a classmate who is visually impaired, for example.

From what we have heard, Ian is very observant during the school day. I would not be surprised if he would actually be able to pull off an hour as the special education teacher right now, before receiving any formal training. Although he has plenty of tasks to complete, he seems to find the time to pay close attention to all of the students’ calendars and their whereabouts. He notices when someone is not where their schedule dictates. Apparently this is worrisome to him, so he makes sure that the student, and the teachers, know that something is awry. Perhaps these interventions could be viewed as a bit bossy, yet this trait would serve him well in a teacher role. If I had to guess, he has acquired the, ‘I like to be in charge and know exactly what’s going on’ gene directly from me. Ian was not yet born when I was a teacher, but perhaps he also notices my teacher tendencies, as I create his next reward chart or hand him his detailed, laminated after-school routine checklist.

Keeping track of classmates is one thing, but he is also quite in tune with – or maybe just nosy – his teachers’ conversations regarding what they need to accomplish. He may not always appear to be listening when he ignores the third request to begin his reading activity, but his ears are turned on like the FBI, tracking criminal activity when he hears another child’s name. One day he overheard his teacher explaining that she had not found the time yet to make an activity board for a student, so of course he came home hell-bent on making it himself. He quickly announced that he was planning to tackle this project and would bring it back to school complete the next day. Turns out, this is not a poster board with words that list activities, like I envisioned. No, this is a board that contains the actual activity – like math beads for counting and shoe laces for practicing how to tie. 

Ian’s desire to control – I mean help – at school extends outside of the classroom into the gymnasium, where he feels right at home. Ian works in a small group with an adaptive physical education teacher – to improve specific competencies, as well as joining the mainstream class a few times a week. Recently, in PE, he has been demonstrating certain skills for typical students who need assistance. He is not too shy to point out what they each need to improve upon, and his sense of pride is evident in these situations. Maybe being a PE teacher would be his calling which would combine his love for sports and being bossy all wrapped in one. I also think the kids would appreciate his style of playing games, in which rules are really more of a suggestion according to Ian.     

None of us, Ian included, ever rule out any possibility for his future endeavors. We cannot predict where life may take him, and limiting that in any way would be a huge disservice to everyone. A few years ago, I would never have imagined him playing hockey on a regular team. When he first stepped on the ice, he wobbled with his skates turned in so far, I had no idea how he even stayed upright. Now, three years later, Ian plays hockey, and it is the most magical experience I have had with him, to date. 

Just as Ian has surprised me over the years, seemingly raising his own bar,  I am always encouraged and awe-inspired hearing about other incredible people with Down syndrome who have broken the mold. Two individuals specifically come to mind: they grew up and are doing great things– Tim, an entrepreneur, who operates a restaurant and Isabella, a talented women’s fashion designer. Seeing what these dedicated individuals have accomplished, I have no doubt that Ian will follow suit.

No matter what Ian aspires to be when he grows up, I truly believe the sky’s the limit. If he became a teacher, I can only imagine Ian’s students loving his crazy energy, relaxed sense of the rules, and his goofy humor. Based on his own shenanigans, he would always be one step ahead of his students. For instance, last year, he hacked his Chromebook’s Internet browser during science class and attempted to order Dominos online. With that type of skill set, I am guessing he would include a lesson to expand his functional skills class titled: ‘How to Order Pizza Online to be Delivered to School…Without Getting Caught’. If the special education teaching job does not pan out, there has often been talk about Ian owning a food truck. I can see it now:  Ian’s Big Nastys, rolling down the street offering ‘anything goes’ burritos, 24 hours a day.

For those of you who have kids with different abilities, I would love to hear what your kid(s) dream of pursuing when they grow up, or their current profession if they are already out in the world!


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Kindness is the language which the deaf can hear and the blind can see.   Mark Twain

 

Like so many evenings, I am happily sitting in the stands attending another hockey practice, loving every minute of watching Ian skate. I hope to experience every skill finally perfected, every puck in the net, and every one of Ian’s crazy celebrations after a coveted goal. Little did I know, it would not be any of these moments that would move me so deeply. The 2 seconds I was about to witness would break my heart into a million pieces, yet simultaneously affirm that Ian will have meaningful connections in his life.

Practice began, and the coaches were demonstrating drills that the players then mimicked back-and-forth across the ice. After a successful pass and a quick stop, Ian and the boy next to him looked at each other and, without hesitation, they high fived. To most onlookers, this might be a typical event. It happens every day between players and teammates in a variety of sports and is likely never given much thought. For Ian however, this kind of exchange is uncommon. It was an interaction with another hockey player – a typical kid – whose name I didn’t even know (yet). It was not the usual high five that occurs so often, with his Personal Care Assistant (PCA), or with a friend in his special education class. This exchange was with someone who could have easily skated on by to race back to the line, and might not even know Ian’s name. This flash of normalcy in humanity is something I rarely have the opportunity to experience with Ian. A piece of my heart I didn’t know was empty, was filled. Until that moment, I had not truly realized how profoundly I wanted those interactions  for Ian. 

We all thrive on it: love and friendship, and Ian is no different. Many of Ian’s best buds happen to have special needs* , such as Down syndrome, autism, visual impairments, or other challenges, as well, and they have formed unique bonds. Ian is blessed with these friends, and they accept each other for who they are, without question or judgement. His strong desire to connect with these kids has encouraged him to participate in an after-school sign language club to better communicate with a friend in his class or to create some visual aids for another student. There is no doubt that these children, as well as their families, are a part of our life we couldn’t live without. Added bonus: I am lucky to know their amazing moms who have become part of a trusted circle of unconditional support. 

Along with these relationships, enjoying all different kinds of friendships is an enriching part of life I desire for Ian. For instance, the neighbor kids who love to hang out with him, and even trusted him to share their garage passcode– which backfired when he entered their house one night. Or the group of eighth grade boys at school who look past Ian’s socially challenging behaviors to see the sweet, genuine person that he can be. Without being asked, they request to sit with Ian at lunch, and despite the fact that he can be a pain, they also think Ian is fun to spend time with. They have brought out the best in Ian, and I love them for it. This kind of authentic expression of camaraderie is something we strive for, but to achieve it, we must work hard with Ian behind the scenes. 

For as long as I can remember, we have collaborated with Ian’s teachers, speech therapists, and specialized programs to teach Ian how to properly socialize with others. Even at fourteen, these skills are still outlined in his IEP and discussed almost daily. He practices and role-plays being aware of non-verbal cues, maintaining a conversation, and seeking someone’s attention – without stealing their school supplies. Sometimes, and understandably so, kids simply do not like him, because he hides their lunch, says mean things, or is just difficult to understand. This breaks my heart, as it would any parent, but I know with time, and persistence, this will improve. 

We have all worked diligently to teach Ian the dynamics of friendship, but employing a PCA for twenty-plus hours a week may be inadvertently causing Ian some confusion when it comes to navigating friend relationships. Our PCAs are trained to be the authority figure, yet in the end, they keep him busy, playing games, or doing crafts  – all of course based on his choosing. Ian has learned that when his PCA comes over, he/she will do what he wants, and pretty much go with his flow. This relationship differs vastly from a friend who naturally wants to have a voice in how they spend their time. As a result, he has a difficult time recognizing the difference between a caregiver and a friend. I don’t blame him for expecting a friend to do whatever he desires, when this is what he regularly experiences with his caregivers. There is no easy solution, but more recently we have asked our PCAs to find those teachable moments to role model good sportsmanship, sharing, and compromise. Hopefully these skills will carry over to his time with friends.

Even after so much effort exhibited by Team Ian, I am still often disheartened with Ian’s inability to handle himself appropriately with friends. In the structured, supervised school setting, Ian does well, but inviting kids to our house presents a multitude of challenges. Just the thought of it makes me feel nauseous, as I am nervous about what issues might unfold. Of course, Chad reminds me that we need to allow Ian to do some of the same things we allow Grace to do, and that includes having kids over to hang out. He is absolutely right, but it is not exactly a break for us. While Grace was growing up, I looked forward to her having friends over, as they would disappear for hours resulting in a parenting respite. With Ian, it is quite the opposite. 

In order for Ian to have a friend over, we need to lay ground rules, check in often, redirect the activities if things go awry, and maybe cut it short, like the time he broke his friend’s only pair of expensive glasses. Or, when Ian scared a friend by keeping him locked in a room without us knowing, jeopardizing our long-time friendship with that family. I know without a doubt, in both situations, Ian wanted to be in control of his environment. He was not trying to be malicious, but that does not change the fact that he acted in a way that deeply hurt his buddies. Fortunately, we are blessed that these families understand Ian and love us enough to want to remain good friends. As a mom, it is painful to observe how insensitive Ian can be, when I witness his love and empathy on a regular basis – like the example of learning sign language to talk with a friend or dancing with me in the kitchen. Despite these obstacles, Ian will only learn if we provide him the chance to do so — even if we need to endure frustrating, embarrassing, or heartbreaking moments like these. 

Beyond having dude hang out time for a few hours, another right of passage in childhood is the sleepover. Ian has yet to have one, as this would prove to be the ultimate challenge, even if it occurred at our house. The energy level would likely be so high that actually having him calm down enough to fall asleep, and allow his friend to sleep, may be nearly impossible. Adding to that challenge, Ian is an early riser, most days at 5:30 am. In an ideal world, he would sneak out of his room to allow his buddy to catch more zzz’s. Instead, I imagine him waking me, and asking if I would whip up not one, but two Big Nastys (a quesadilla stuffed with 2 meals worth of food). Most certainly, he would awaken his companion, who is a teenager after all, and wants to sleep past sunrise. 

One day, we will embark on the coveted sleepover, but first we will strive for a few hours of successful friend time with no broken glasses or locked doors. I am convinced there will be many more high-five moments for Ian as he navigates the world of friendship. And even if some interactions only last 2 seconds, I will never take these for granted.


As always, I would love to hear from you about your children and their friendship stories?  Challenges? 

 

♥                          ♥                       ♥     

 

*Even after fourteen years of parenting a child with Down syndrome, I still have so much to learn. In fact, I have been capitalizing the ‘S’ in syndrome all this time, when actually it is not capitalized. Yep, my blog editor, Holly, asked me about it the other day. We laughed because she was worried about pointing it out to me, as she thought, ‘Well, Lisa must know, after all she has a kid with Down syndrome.” The bottom line is that we are ALL learning and growing together, and we must give each other a little grace when it comes to these sensitive topics.   

I am also learning about the way in which we refer to people with disabilities, as this is ever changing. In my blogs, and in my future book, I will always strive to choose my wording based on inclusivity and respect. I discovered this wonderful resource I wanted to share: APA Style: Language without Bias. I love the first section:

“When you are writing, you need to follow general principles to ensure that your language is free of bias…The language to use where disability is concerned is evolving. The overall principle for using disability language is to maintain the integrity (worth and dignity) of all individuals as human beings. Authors who write about disability are encouraged to use terms and descriptions that both honor and explain person-first and identity-first perspectives. Language should be selected with the understanding that the expressed preference of people with disabilities regarding identification supersedes matters of style.”

 

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“Yes, I gave you life, but really you gave me mine” -unknown

 

According to Wikipedia, in Aeronautics, a soft landing is any type of aircraft, rocket or spacecraft landing that does not result in significant damage to or destruction of the vehicle or its payload, as opposed to a hard landing.

 

Ian’s Space Rover

Last week, Ian was gathering some materials around the house for a rover he was building in his space class. I love that he shared this with me, and even better yet, that he was so articulate. “These are for my rover, because I want to give it a soft landing, he proudly stated. Without further thought, he continued to load his backpack. His phrase, however, lingered in the air for a few minutes afterwards. Those simple words ’soft landing’, evoked an image of giving someone a chance to fly and then ushering them back home, ever so gently. Immediately, I thought of my childhood, and how my experience growing up was so safe. At that moment, I not only wanted to thank my Mom, but also vow to always ensure a soft landing for Ian – just as I have for Grace the past 18 years.

♥                          ♥                       ♥            

Dear Mom,

Birthdays should really be about two people: the person celebrating their birthday, and the person who gave them life. After waiting more than a year to be together, celebrating with you is the perfect gift. Today, on my 50th birthday, I dedicate this special-edition blog to you. Thank you for always creating a soft landing for me, and for my kids. 

According to Wikipedia, in Aeronautics, a soft landing can be achieved by Parachute—often this is into water.

Growing up, you created my personal parachute – full of basic skills, developing beliefs, and your life lessons. When it was time, you launched me into the world and encouraged me to fly, knowing I had this safety net built from your teachings. When I found myself in a troubled spot in life, I pulled my parachute’s ripcord, and everything was okay. I landed softly, because of you. I still needed to make my own decisions and to ‘jump.’ However, I risked more, knowing that when I fell or made a mistake, I would always be welcomed home.  

Not only did you prepare me, you do the same for Ian – without hesitation. From his first days at home, you were quick to educate yourself about what Ian needed to reach milestones, such as rolling over and sitting up. Your time and devotion was unmatched. I remember you, and Dad too, spending hours laying on the living room floor playing with Ian. You consistently encouraged him to try a task again and again, and again, all with incredible patience and empathy. Not only were you amazing with Ian, but you simultaneously supported me in a way that only a mother could. I especially needed you during those first few exhausting months with a newborn and processing what Down syndrome would mean for our life with Ian.

Just as you did for me, I am now creating Ian’s parachute for his future landings. I am committed to spending more time teaching Ian what he needs to know, as opposed to doing it for him, because it is easier, faster, or less messy. Though this puts me out of my comfort zone, allowing him to try, fail, learn, and succeed, he is learning how to pull his own cord. His pack will take longer to piece together assemble than mine did, and it may require multiple iterations; but it will be ready for him when he wants to venture out on his own. Or maybe sooner, if I decide to push him out of the plane! 

According to Wikipedia another type of soft landing in Aeronautics is, “Being caught in midair, as done with Corona spy satellites.”

There is something magical about someone or something being caught in midair. Sometimes when I am free-falling in the world, and I cannot take one more setback, I have experienced you catching me in midair to assure a soft landing. Even when I was younger, independent, and was convinced I didn’t need anyone else’s support, you waited patiently until I realized that I did. No ‘I told you so’, and no questions asked. Back then, and even more so now, you are always unconditionally present, to listen or simply relate by saying ‘Honey, I understand. I would feel the same way.’ It isn’t about saving me, but giving me space, and acknowledging my feelings, or being a shoulder to cry on and sharing a different perspective, if needed.

Though you can easily read my cues, and you know how I am feeling in a given moment, with Ian, this is not always the case. When he is extremely upset or excited, we certainly know it. However, feelings of frustration or jealousy are not as concrete, and Ian has a difficult time conveying these emotions appropriately. Instead of being able to explain and articulate his current state of mind, he shuts down and acts angry with everyone. 

Despite these difficulties, you always seem to find a way to catch Ian’s emotional meltdown in midair. You are calm, gentle, and reassuring. And you know he loves music, so you can hardly go wrong when you belt out, “I love you a bushel and a peck. A bushel and a peck and a hug around the neck. Doodle-oodle-oodle, Doodle-oodle-oodle,Doodle-oodle-oodle doo.” His anger quickly evaporates and is replaced with a big smile and contagious laughter only you could evoke. 

I look forward to the day Ian will be able to understand his own emotions enough to convey his thoughts to me. When he does, I will be right there for him, holding the same space, acknowledgement, perspective, and shoulder to cry on, like you do for me. Though this may take time, for now, I am thankful to be the daughter who still feels safe in her mother’s arms, and also the mother blessed to be doing the same for Grace.

Life will present challenges for both Grace and Ian, but this is a natural part of growing up. Facing obstacles and working their way through life’s turbulence will help them learn about themselves, take risks and get right back into orbit if they fall. And when they do, I will always be their soft landing – just as you are mine.

Love you forever,

Lisa


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Welcome back. For those of you who may have missed it, check out Ring Leaders of the Shit Show: Part 1

 


Part 2:

Disclaimer: As I was drafting this blog about our marriage, I figured it would be fair to ask Chad some questions, solicit his comments, and then provide my reader with a few quotes. Well, he wrote stuff, I tried to edit it, he couldn’t explain what he wrote, I got frustrated, he said, ‘okay forget it,’ and I wrote the whole dang thing myself.

 

“No relationship is all sunshine, but two people can share the same umbrella and survive the storm together.” ~author unknown

Our marriage is, by far, considerably more stressed by the day-to-day stuff, as opposed to the fact that we are raising a son with Down syndrome. Chad and I are on the same page about the bigger picture, such as Ian’s future, and how we ultimately plan to get there. Often, however, this truth is overshadowed by our constant discussions about the appropriate discipline for any given situation, whether Ian has had too much gluten, or if we should set him free to bike alone to school down the street. It is these little things that wear us down. Consistently holding Ian accountable, and staying true to our word when we request something of him, pushes us to our limits on the daily. One of us always needs to be ‘on duty,’ supervising Ian. So, many times, the only way we cope is by taking turns, so the other parent has a few minutes of respite. If we disagree about anything, it is likely over some of the ongoing, repetitive choices we make regarding Ian that are never ending. Or when we are caught off-guard, with Ian’s outright belligerence. 

Like the time we were trying to leave the house, but as usual, Ian would not comply and get in the car. We needed to be somewhere pronto, and unfortunately, he sensed our urgency. After what seemed like an hour, Chad finally had to manhandle Ian into the backseat. Before Chad made his way around the van, Ian proceeded to quickly open the window and launch himself out – a very ninja- like move, I must say. I am sweating bullets by this point, wondering if this is really how it’s going to go down. Anger over how Chad is handling this situation is bubbling up in me, yet I am at a loss for a solution. In these moments, the one who is least likely to completely lose it, puts on their superhero cape and leaps tall buildings. Yes, sometimes, it feels that monumental. Grace was trying to contain her laughter, so she was clearly not planning to be Wonder Woman. In this case, it was Superhero Chad who literally sat on Ian, while we locked the doors and windows, so he could climb over the seat to the front without even leaving the van.  Whew!  Now that took team work.

Other times, the issue is more subtle in nature but still has a great impact on all of us. One night after dinner, Ian was ignoring everyone and refused to clean up. He proceeded to eat ever so slowly, watch his iPad and talk smack at the same time. As Grace helped clean, she was visibly upset that Ian wasn’t pitching in. Grace and I agreed that someone needed to take the dang iPad away and direct him to the task at hand, yet that is easier said than done. I know she often feels that Ian gets away with this kind of thing all the time. She started berating him for his lack of teamwork, even though she is not the parent, which caused some of Chad’s anger to land on her. In an attempt to avoid conflict, Grace and I tried to reason with Ian, and warned him that he may lose a smile on his chart or the chance to have the nightly popsicle. We were unsuccessful. From our perspective, Chad was just allowing Ian to get away with not cleaning – taking the easy way out. Grace and I wanted accountability, but that is difficult to implement, when the family dynamics and expectations in the moment are not in sync. Although Grace is removed from these situations for the most part now that she’s away at college, I know Ian’s behavior – seemingly being let off the hook – always bothers her. Our continued response cannot always be, “Grace, we know it’s not fair, but we are the parents, so let us handle it.” 

Healthy communication is key, but often it is overlooked when we are all angry and tired. Grace and I felt powerless and frustrated. When we had a moment to step into the other room, Chad explained that if he took away the iPad in the heat of the moment, it would have caused more issues than it would have solved. Ian would most likely have hit Chad or thrown the iPad, resulting in the need for force, which Chad tries to avoid. We were unaware that Chad planned to talk with Ian later when he settled down, as opposed to being subjected to physical altercation. Ian is bigger and stronger at fourteen, so unfortunately Chad is the only one who is able enough to handle him. This burden has been Chad’s to bear for many years, and he stressed to us the importance of strategic timing and word choice, instead of physical action. We all learned that night to take more cues from each other, and to trust that the other person has everyone’s best interest in mind. Ian will be held accountable, just maybe not immediately, if that does not serve him or the family best. 

When Ian was born, my good friend Jenny reminded us to set aside time for ourselves, and for each other, no matter how crazy life was with Ian. We took Jenny’s advice to heart, and for years we have employed many Personal Care Assistants (PCAs) who supervise and care for Ian on a daily basis. We are also blessed to have Grace step in as the perfect caretaker. She is often more in-tune with Ian and knows him better than we seem to know him. When we leave Ian in her trusted hands, we are truly able to take much needed breaks.

In order to continue to cultivate physical and emotional connection in a marriage, there is no substitute for just being together. When we do have time alone as a couple, we often default to talking about Ian’s progress in school, his recent meltdown, or how one of us poorly handled a situation with Ian. We are ultimately striving to make life better through these types of conversations, however, spending our coveted alone time rehashing these events defeats the point. There is a time and place for this of course, but a true break from Ian is not to be spent talking about Ian. We are not really connecting with each other as Chad and Lisa, but as Ian’s parents. Recognizing this tendency, we think of more fun things to discuss, such as, ‘What was the high and low of your week?’ Or, ‘where would you like to travel for our next vacation?’ We rely on these techniques in hopes of being transported back to the light, dreamy conversations we enjoyed before kids – if even for just a little while. When we have a reprieve, we both feel replenished and ready to get back to raising Ian, with a full heart and an open mind. 

Before everybody starts thinking that Chad is always the perfect Yin to my Yang, a funny thing happened while writing this blog. Even though we work together more often than not, sometimes it feels like I actually do everything, and Chad is a clueless member of our team. Here is a prime example. Ian had finished his shower and was on a mission to eat his popsicle. Chad was in the kitchen. I figured even though he should already be aware,  I would remind him that Ian needed to prepare his things for school tomorrow, before he got a treat. Chad agreed. Yet it wasn’t 20 seconds later that I heard Ian opening the popsicle wrapper, and I realized there’s no way any of the school preparation had been accomplished. I walked into the kitchen to see that Chad’s eyes were glued to the computer, Ian hadn’t done anything, and his popsicle was about to be eaten. Startling Chad from his concentration, I sarcastically announced, “Hey, Ian is about to have a treat, and nothing is ready for tomorrow!” Chad replied, “What? I can’t keep track of it all!” I shook my head, smiled a little, and thought, ‘Yeah I do everything and you just…show up.’

It’s a known family fact that I am more in the loop regarding the coordination of Ian’s paperwork for services or doctor visits, and the oversight of his school, sports, and PCA schedule. This sometimes frustrates and overwhelms me, yet it is no secret that I like to be in charge, and do it my way. I realize my relationship with Ian as his Mom looks differently than Chad’s as his Dad. We each have our part to play on the team, like we do for Special Olympics Track. The role Chad plays with Ian, that only a dude (as they would say) could assume, is priceless. I wouldn’t change it for anything. Chad and Ian go for long bike rides, on a custom-built bike with big, off-road training wheel tires. They talk about body hair and how Ian is starting to look more like Dad. They match their superhero t-shirts on a regular basis: Hulk or Captain America is the big decision of the day. When I watch the guys head off in their matching Flash tees for another epic ride, I smile, knowing that yes, the dudes have their thing, but only Ian and I can rock a session of dancing in the kitchen. 

Chad and I may not always see eye-to-eye on every aspect of parenting Ian. I might roll my eyes, shake my head, or think, ‘once again, I did all of the work, and Chad ‘just shows up’ – but ultimately, having Ian in our life has encouraged us to grow more together, than apart. And for that, I am forever grateful, shit-show and all!

 

“Children with special needs aren’t sent to special parents, 

they make parents special.” ~ Unknown

 

 


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This is dedicated to my long-time friend and talented editor, Holly. I cannot imagine this journey without you.

 

Friday Night (2 days ago):

Every week, my editor Holly spends some of her Friday evening proofreading my blog so we are ready to post on Sunday. Yes, she is unbelievable, and we have accomplished this for ten weeks in a row. Unfortunately, she had a challenging week, so I was not surprised when she texted that she would not be able to edit – Ring Leaders of the Shit Show Part 2 – until Sunday. Of course I understood completely, yet I knew the blog would need a few more hours of work on my part, after she edited – making it nearly impossible to publish on Sunday. But this time, I took a deep breath and reassured myself that skipping a week is okay.

Saturday Morning:

After taking a break from running the past few months, I was excited to get back out there and enjoy what I love. As my legs began to move, my thoughts immediately jumped to how I was feeling about not publishing our planned blog. I reflected on old habits and why balance is important in my life. Even though I was fine with not posting, by the end of my run I realized that I wanted to share my reflections. Ultimately, it is good to just let go.

Preface:

Though I did not spend my usual seven days writing twenty drafts, nor has Holly edited this one, I am excited to put it out there anyway – flaws and all.


“Life is a balance of holding on and letting go, 

and knowing when to do which of the two” 

 

About twenty years ago, my father-in-law and I were standing in his kitchen washing the dinner dishes, a common ritual when Chad and I visited his childhood home. One particular night, I recall a conversation about motherhood. I explained that I wanted to have children, but that my running aspirations would always be my first priority. My judgement was so skewed. I simply could not see it any other way. At the time, I was in peak athletic shape. I was running 50 miles per week, while following a training regimen and winning races. I was addicted. I rarely listened to my body or took days off. The word ‘balance’ was not in my vocabulary. Although my father-in-law is a collegiate track and field coach of forty-seven years, he promised me that one day, I would see there is more to life. Of course, he is right. After all, I have two amazing children, and running only happens when I am blessed enough to feel good. 

I have come a long way since that day in the kitchen. However, I still catch myself falling back into that rigid, inflexible mindset. This blog and my future book is now a prime example. I am so passionate about it, like I was about running, but with that passion comes my inability to go with the flow.

Last summer, after writing more than ten chapters for my book, I quit. It was such a daunting task to live with the challenges of Ian, and simultaneously be writing about him. When I stopped, I spent months feeling like I failed myself. I began to think back to my demanding running schedule, and wondered how I made that happen. I remembered that I would break the week into manageable pieces, and take one day at a time. I realize now that my writing and my running are not all that different. The end goal is publishing a book, but for now I will focus on writing blogs that share my experiences and hopefully resonate with my readers. The book, like the marathon, will be part of the journey.

As much as I love my commitment and determination about this new endeavor, I am accepting that sometimes things change, like this week, and I need to roll with it. I was presented with an opportunity for growth, and becoming a better version of myself. I will continue to hold on to my goal of posting every week and writing a book, but I will let go of the way I think it should happen, and allow it to unfold as it will. 

I sent this to Holly earlier this week, not realizing that I would be the one who needed to surrender. 

“The answer to control 

is practicing 

Surrender”

-Daily OM


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