“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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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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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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Part 1:

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.

“His arms are strong enough to hold every fear, every beautiful broken piece of me. This man doesn’t just make me feel complete, he completes me.”  – S. Marie

“Are you done talking yet?” Chad anxiously questions me, hardly able to contain his excitement to get the athletes moving. I was just as thrilled to start as he was, but it was I, not Chad, who spent months behind the scenes. I prepared the schedule, found the volunteers, secured the school/track, and sent out many emails to the team. Undoubtedly, I was rambling on, but I was thrilled to share the plan for our Special Olympics Track season with the athletes and their parents. His flippant comment irritated me and, without thinking, I shot him a nasty look, and made a snide comment about how all he has to do is just show up. As the hour progressed, my anger softened, watching him connect with each athlete with incredible passion. I was once again reminded why we are a great team: I play my role in preparing us to have a great season; and he steps in, leading each practice that pushes every athlete to be their best. We balance each other. Whether it’s coaching our amazing athletes, or raising Ian and Grace, our strengths complement each other, and I need to trust that.

Chad and I have been together for twenty-four years – which hardly seems possible. Those first few years were blissful – no kids – just working hard and playing hard. When we began to plan for a family, we talked about what that might be like, and what kind of parents we would be. Of course we are the best parents ever – until we have children that is. There is no way to know ahead of time, if we will see eye to eye about raising other little human beings. When Ian arrived in 2006, Grace was almost four. Naively, I figured we had at least the first few years of parenting figured out. Boy, was I about to be surprised. 

When Ian was born, we may as well have tossed out the manual Parenthood with Love and Grace, and maybe adopt a more reasonable parenting guide called Fine. Whatever. Go Ahead. It appeared however, that Chad was writing his own manual: How a Calm, Cool & Collected Dad Faces Adversity. 

Ian was born at Hudson Hospital in Wisconsin. We immediately asked if he had Down syndrome, which was indicated as a possibility in a triple screen test during my pregnancy. The doctors initially reported that he was perfectly healthy, with high APGAR scores. Fast forward 24 hours: my mom instincts kicked in, and I knew something was terribly wrong. The nurses were flustered, not able to figure out why he was unable to keep breastmilk down. He was rapidly losing weight, down to 4 pounds from 6, so a decision was quickly made to rush him by ambulance to Children’s Hospital. A few minutes after arrival, the doctor sat down and candidly informed us that, not only does Ian need intestinal surgery, but that he indeed has Down syndrome. Both pieces of information, we were hearing for the first time. The way Chad handled the news they delivered in the NICU, is as vivid now as it was fourteen years ago, and it was perfect. He sensed that my mind was traveling in a million directions, so immediately, he held my hand, and quietly whispered, “let’s just take one thing at a time.” There are probably only a few aspects of that first overwhelming week that I remember accurately, and this one was unforgettable. Chad’s words still guide me to this day.

Through multiple surgeries, the day-to-day challenges of Ian, and mounds of paperwork, his calm and practical approach has not wavered. The road with Ian would be unlike anything we had ever traveled. Yet right then, I knew with Chad by my side, it would all be okay. We were just scratching the surface of our journey…

After 21 days, our little 4 pounder finally said goodbye to the NICU, and our journey with Ian really began. Probably the most heartbreaking part for me, yet something Chad was able to accept more easily, was how quickly the gap widened between what Ian could do, compared to other kids his age. This slow developmental progression was always on my mind. I was obsessed with it. It was difficult for me to accept that he may not walk until closer to age three, or not be potty trained until age six or seven; especially after watching Grace breeze through these milestones. She was always my gauge, and that gauge was now shattered. I recognize now that I spent many years  – probably the first nine of his life – comparing Ian to others. Chad continued to remind me, “Ian. Is. Ian.” 

Though Chad and I sometimes have varying approaches, I have discovered it is our differences that make our relationship work. Chad thrived on arming himself with as much knowledge as possible. He was always able to absorb the information from a practical, rather than emotional standpoint – as I tended to. While he was reading, I was probably off crying somewhere. I remember avoiding any kind of information. Perhaps some of this was denial, wishing I had a normal son, but it was also most definitely self-preservation. Reading too far ahead about what life might be like, with a son with Down syndrome, was just too much for me to process. Luckily for me, Chad could view the entirety of something, yet still manage to take it step by step. And when I was ready, Chad would share bits and pieces of that knowledge with me at the perfect time. 

It took me years to find the balance between educating myself about Down syndrome, absorbing what I needed for our son and family, and not feeling overwhelmed by the enormity of it all. Ultimately, it was Ian who made me see that he is on his own path, one only Ian will pave. Over the last few years, I have witnessed the amazing things he is able to accomplish, such as  completing multiplication problems to playing hockey. I have become less worried about how he stacks up to anyone else. Now I am able to focus my energy on helping Ian become a better version of himself. However, I must admit, I sometimes revert back to my old thinking, but Chad is there to call me out. In the midst of a frustrating moment, I will lament, “If he didn’t have Down syndrome, he wouldn’t be doing this, or he would be able to do that.” Chad shakes his head at me and then sheds light on the concept of raising a young son. “Lisa, some of what you are seeing with Ian is not Down syndrome. It has more to do with Ian being a boy, or his personality, or the fact that siblings are expected to harass their sisters.” Chad has expanded my lens to view Ian from all different angles, not just the one that acknowledges his different abilities. Even without that dang extra chromosome, he would still likely be a pain in the butt – yet one I adore and could not live without.

Stay tuned.  Part 2 : Ring Leaders of the Shit Show arrives next weekend!

“It’s not just about tying the knot, it’s about keeping the knot tight.”

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“Get into the habit of asking yourself: does this support the life I’m trying to create?”

~Unknown

Chad and I often imagine Ian living in an apartment with his partner in crime, Nick, who also rocks an extra chromosome. They are such a riot together, so it’s easy to picture all the shenanigans they would get into. Despite the long road to self-sufficiency, there is no doubt in my mind that Ian will be fully capable of living independently. By the time we reach that milestone, Chad and I will definitely want some independent living of our own.

Luckily, our school district is proactive about discussing Ian’s future, far beyond the walls of the middle school. At fourteen, Ian’s academic team is already looking ahead to the next ten years and collaborating on what that might look like. Questions such as these in our Parent Survey were asked prior to our yearly Individualized Education Plan (IEP) meeting: What are our short term goals for Ian this academic year, and for high school? Do we see Ian living with us, in an apartment or group home? What kind of job do we envision Ian having? Although it seems odd to discuss his future employment or renting an apartment, I am reminded that it is never too early to prepare him, and us, for these scenarios. Also, we cannot forget that it will take years for Ian to acquire the life skills he needs.

Using this information to guide us, the IEP is specifically designed to accomplish these goals. We view each academic subject from a uniquely different lens, as compared to a traditional educational path. When it comes to math, topics such as algebra and geometry are not essential; however it is important for Ian to be able to count money and follow a budget. It would be a bonus if he would learn to save his money instead of impulsively blowing it all in the Target toy aisle. In English class, he is focusing on specific words that are practical for daily activities such as reading signs in the neighborhood, and recognizing safety terms. 

At school, Ian has a team of more than ten people to keep him on track with his goals, but at home it feels daunting with just two of us. On any given day, we prompt Ian five to ten times per hour to complete simple day to day tasks, which by this age, shouldn’t need reminders. However, there is always an argument, a discussion, or a negotiation that ensues. A simple transition from shutting down his video game to joining us on an errand is an ordeal. The conversation continues as we try to convince him to come with us, and sometimes bribe him saying his Nintendo Switch may come along. Then we may remind him about the rewards available to earn later in the evening. When all else fails, Chad may need to physically redirect him.

After all the time spent trying to hold Ian accountable for what needs to be done, I have no energy left to ask him to wash his dishes or put away his hockey gear. I admit, in these exhausted moments, I travel the road of least resistance, knowing full well that I am not thinking about his future. Sometimes it feels like it is not worth the time and effort for the potential break – whenever that comes. I am used to the instant gratification that comes with raising Grace. We teach her, she learns, and we are able to have a much needed break. When it comes to Ian, I need to persist despite wanting to give up. Sometimes it takes a gentle – or not so gentle- reminder from my daughter to get me back on track.

With fresh eyes, Grace returned from being away for three months at college and observed our interactions with Ian. This new perspective, that can only be gained from time away, was enlightening. 

“We need to give Ian the freedom that we know he is capable of. He needs the space so he can grow on his own,” Grace explained, and I nodded, acknowledging that in the past I was not ready to commit to it. Or maybe just too exhausted to follow-through consistently. “Think about it mom,” she continues, “what’s the worst that can happen?” Our conversation resonated with me, and I knew it was time for big change. 

I forged ahead with a plan to require more of Ian. I knew this would involve creating visual instructions, repeating verbal cues, demonstrating each step – and a whole lot of patience. I purchased a scrub brush, wrote his name on and asked him to wash his dishes after dinner. I required him to do at least one chore to earn his treat for that night. I created a designated area in the fridge with prepared options so he could pack his own lunch. I typed a smoothie instruction sheet and allowed him to make it on his own, from start to finish. He succeeded on every task, with flying colors – well except a bit of spilled milk.  

He doesn’t know I heard him, but as he finished concocting his smoothie the other day, he declares to himself, “It’s hard to make it, but I can do it!” How powerful is that?  He was being his own advocate and was proud he didn’t need my help.

During this process, something even more important came to light. If I do everything for him because it is easier for me, more efficient, and less messy, I am depriving him of the chance to feel pride and develop self-confidence. And that doesn’t move him towards a future of independence. Yes, it will be messy, and sometimes done haphazardly, but I need to let go and trust that we will see returns down the road.

I know there will still be days when I will be too tired to fight it, and I will hang up his coat or make that smoothie. The difference now is that I will remind myself that taking the harder road leads Ian to an amazing future. Maybe even one that includes sharing a place with his sidekick, Nick.  

What goals do you have for your collective family’s future? We would love to hear the little ones and the big ones, what challenges exist, and the steps you’re taking to see them come to fruition?

Comment below or email me if you would like to be private:  lisa@littlewitt.com

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