After a tough day watching Ian, Connor, Ian’s high school personal care assistant (PCA), had this conversation with his mother:

Connor: (frustrated sigh) Sometimes Ian isn’t a very good listener, and it’s really frustrating. When he doesn’t listen, and I say the same thing over and over…I want to scream at him, but I know I can’t. 

His Mom: Having kids can be very frustrating. I imagine having a kid with special needs has even more challenges and frustrations. This is the exact reason why kids shouldn’t be having kids and a good reason to use birth control—every time. And just think…you’re only spending a few hours with him, and not even every day. 

Connor: Uh yeah. I know. I don’t know how Chad and Lisa do it. Sometimes when he’s having a bad day, the two hours I am with him seems like forever. 

His Mom: I bet it does. Something to remember, when you choose to have sex, you’re raising your hand and saying, “Today, I’m ready to be a dad,” and there is no guarantee what that child will be like. Chad and Lisa certainly didn’t plan on having a child with special needs. It’s challenging for them, and they’re ADULTS! And once you’re a parent, you’re a parent every day, 24 hours a day. 

 

We have employed more than fifteen PCAs, over the past nine years.  Each and every one of them has greatly impacted our lives and has given us new insights into Ian.  I can only hope they have learned as much from us, as we from them.  And with Connor, we know he learned more than he expected about the challenges of parenthood–and a child with special needs.

Whether the caregiver is someone already in our lives, or new to us, deeper relationships emerged than I ever expected. This makes sense, considering many are in our house up to 20 hours a week, and some even join our vacations. It is as if we gain another son or daughter in our family, who become connected with Ian, and with us. We have been there to hold their hands, wipe their tears, or simply listen to the challenges in their lives. We do our best to support them, when we know they need it most. 

The flip side of having long-term caregivers is that this kind of relationship can be overwhelming at times, especially when we are already tapped out parenting Ian. Despite this truth, I would never trade these special bonds for anything. Emmie, one of Ian’s very first caregivers, texted me this week: “I’m very proud of my time with Ian and your family. You all shaped me to be who I am today, and I owe a lot of my personal successes to it…he will always be my buddy, and you guys will always be my family.”  Emmie has a special place in my heart, as she was with us in Florida, the last time I saw my father before he passed. These wonderful memories with my parents will always be cherished, with Emmie alongside us.

The first few years of his life, the only way we felt comfortable enough to leave Ian was to place him in the hands of family. Chad and I were lucky to have both grandparents willing and able to care for Grace and Ian. We even had the chance to travel, just the two of us. Looking back, I am thankful for the special connections they created during these occasions, while we enjoyed much needed respite.

Despite the efforts of family, we always need more than just a handful of hours, or a few days vacation to succeed in our careers, manage the household, and actually be sane parents on a daily basis. We are fortunate to have a supportive social worker who helps us navigate both the county and our state systems. After mounds of required paperwork and visits with nurses to determine the level of care Ian needs, they authorize weekly hours for our PCAs. This time is logged and paid through an agency who employs our caregivers.

The task of actually finding someone–the right someone–to work with Ian is yet another process that takes much time and energy. I post ads at local colleges, ask family and friends, and utilize companies like Care.com. I am always seeking an individual who will love Ian, and have enough patience, day in and day out, to have fun with him, while putting up with his shenanigans.  After many Care.com messages, emails, phone calls, in-person interviews, and ‘Ian-meet-and-greets’, we secure someone who we hope will stick around for at least a year.  Ian needs that consistency, and to be honest, if I need to hire and train my sixteenth caregiver, I am bound to lose it!

The first day our new hire arrives, ‘Ian Boot Camp’ commences. I am always worried that if I don’t explain EVERYTHING, Ian will outwit the newbie and do something crazy. Even at a young age, he was smart enough to take advantage of a caregiver very quickly.  He has been known to lure the PCA into his room, and then proceed to lock him/her in. Turns out, almost every one of them has been locked in Ian’s room at some point. Thankfully, they all came back the next day ready to try again – after they figured out how to escape his room.

For many years I was essentially ‘training new hires on the fly,’ and most likely overwhelming them, while I talked a mile a minute. I finally realized it would be much easier to create The Ian Manual. Typed up, easy to edit, and ready to share. This document, seemingly simple at first, turned into our official employee manual for working with Ian. This guide includes, but certainly is not limited to: house rules, reward chart procedures, meltdown protocols, food options, and tips for decreasing cat harassment. It has proven to be an invaluable reference guide for our PCAs.

This all works great for in-home care, but attending summer camps, after school programs or school sports is another story. Most typical kids simply show up and are adequately supervised by the staff.  By contrast, Ian needs one-on-one supervision in these settings, much like during his school day. In this situation, the PCA’s role is more of an observer and facilitator, as the main goal is for Ian to learn appropriate socialization. So, it’s back to the drawing board to create yet another set of instructions for extracurricular programs, and an accompanying reward chart to keep him on track.

These ‘operating instructions’ for Ian can be daunting, so the trick is to make sure that the potential new hire, after reading the detailed documents, still wants to work with him. Some may think that it is easier to be the CEO of a company, rather than work with Ian.  Luckily, we have had many amazing people who were ready and willing to step up – some even for several years – before moving on. A few of our past caregivers, like Connor, went on to join the armed forces.  So, if I am smart, when I am seeking another PCA, I may ask one of these highly trained soldiers to return to duty at the Witt House. Surely, after military boot camp, they may be better suited to be one step ahead of our 14-year-old mastermind, and perhaps even be able to escape Ian’s room unscathed.

♥                          ♥                       ♥            

Just days after Ian was born, I vividly recall a conversation with my long-time friend and special education director, Jenny. The advice she gave that day was pivotal in my approach to parenting Ian. “Be sure to take breaks often, because parenting Ian will be harder, and will last longer, than any other kind of parenting.”  Thinking of her sentiments daily, I give myself permission to accept help, and take time for myself, without guilt. Thank you Jenny. 

No words will ever be able to express my gratitude to Ian’s grandparents, and to all of our PCAs, past and present, who love Ian unconditionally.

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I would love to hear your funny or challenging caregiver/babysitter stories.

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

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“In My Defense, I was Left Unsupervised”

~Lee St. John

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As I write this blog about supervision, I am about to cry — or maybe even scream.  We have a personal care assistant (PCA) here to watch Ian, yet that does not stop him from wandering around aimlessly, standing next to me while I write, picking his nose and arguing with the PCA.  Of course I am privy to their banter back and forth, which drives me nuts. It’s fitting, I suppose, as I write about this topic of supervision.

Having a kiddo with Down syndrome means we are on high-alert every moment.  It is exhausting! This is why I dread long breaks with Ian at home. I feel a little guilty saying that as his mother, but it’s real. Every second, of every day, I am consumed with Ian.

When we decide to embark on parenthood, we accept certain responsibilities that will be required of us. We play with our children, supervise their activities, and enlist babysitters to give us a break.  None of us are truly prepared to be parents, but typically these roles fade away each year, as our children become more independent. I had no idea how much longer each phase would be with Ian.  Ignorance is bliss I guess, until it’s not. I still need to do all of these things, but ultimately, I want to be done with these activities. Sometimes I have a difficult time accepting that this is our life. I want him to go to friends’ houses, to hang out on his own, to have a full conversation, or to just make his own damn lunch.

“Having a child with Down syndrome is like taking the scenic route. You still get where you are going. It may take a little longer, but it will be well worth the trip” 

The author is unknown, but the message is certainly clear for parents of children with Down syndrome or any disability for that matter. I agree, it IS worth the trip, but some days, I would like to get to my destination a little faster.

By far, the supervision of Ian is the most challenging and pervasive in our lives.  It affects everything we do all day. Ian always needs to be accounted for, before we do anything – even use the bathroom. I catch myself walking around the house with my shoulders up to my ears – wondering what is next.  Will he get into something he shouldn’t, wake Grace up too early, or interrupt Chad’s work call?  Somedays I am so excited when he is eating lunch, and I know I have a mere 30 minutes to be productive.  Then I debate what I should accomplish, how long it will take, and if that is the best use of my time.  Ugh! Sure, we can leave him alone for 15-20 minutes, but many times, mischief such as cat harassment will occur for no apparent reason.

Recently, Ian was trying on clothes after his growth spurt. I was impressed that he was actually cooperative, as usually this type of non-preferred activity would require some sort of bribery.  Alas, it lasted for just a moment. In the back of the closet was a whole stash of his shirts. At first, I assumed they fell off the hangers but no; he carefully hid the evidence.  A batch of T-shirts laden with cat fur had been shoved in the back. In other words, he was left unsupervised, and he obviously had been pestering one of our three cats. He clearly knows this is wrong, because he’s hiding the clothes. It is a reminder that we need to have eyes on him all the time. I let out a deep sigh, knowing that now I need to teach him lint rolling 101, and be even more vigilant when it comes to the cats.

More stress and emotions definitely surface during breaks when Ian is home for an extended period of time. He truly thrives in the social, active school environment, so it’s difficult for us to provide that for him, and it’s challenging for Ian. Each year I ask for a list of all the teachers and aides who work with Ian so we can give them small gifts.  I am astounded by the sheer amount of individuals–15 staff–it takes to navigate Ian through his academic day.  Each of these people who spend a short time with Ian are able to come in with a fresh perspective.  It is their sole job and focus. Chad, Grace, and I have a million other things to do. No wonder we are tired. Somedays I think we need that same kind of team here at our house, in addition to the PCAs who practically live in our home.

Like all parents, we pay babysitters to help us while we work, or need a break. The difference with Ian is that, unfortunately, the need for supervision has no end in sight.  He’s currently 14, and it could still be years before he can be safely left alone.  That thought simply blows my mind, and sometimes it is suffocating.  Since Ian was about three, we began to search for, hire, and train PCAs. Their role is to supervise, play and provide personal care – such as help with toileting or personal hygiene. They first read the lengthy manual I have created about Ian, and then embark on Ian Boot Camp. We have met some amazing people who we still keep in touch  -years after they leave us.  I would not trade that for the world, but it doesn’t diminish the amount of work needed to train each person and sometimes the inconvenience of always having somebody additional in the house. So, sometimes video games become the babysitter.  Yep, I’m feeling guilty about that, too.  

Often – despite the fact that I know better – I allow Ian to use my phone to capture some highly desired Pokemon, so I can just have 10 minutes of peace while waiting at the doctors office.  Of course he cannot just play the game and hand me my device back.  No way!  That’s not his version of fun.  I assume  he is still battling with a new found Pokemon, but instead he is finding one of my apps to delete, thinking I will not notice.  Phone in hand, I look down and sure enough there is a space where an app once lived.  Which one was it; my brain churns.  Usually it takes me a few days to recall, and then suddenly there is an issue with Ian not listening, and I need to shut down his video game.  It is then I realize – ironically, that the stinker keeps deleting my Nintendo Switch Parental Control* app.  Just when I think I am onto him, he is actually onto me.  

I could write much more on the topic of supervision, but it is suspiciously quiet in the house.  

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Resources…that may help you outwit your kiddos- ha!

Kidslox – An app that grants control and access to any iPad from a phone or other device.

*Nintendo Parental Controls – Great for setting time limits.

Smart Plug Use this for your kid’s video game unit for easy shut down.

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I would love to hear your stories.  Comment below or email me if you would like to be private:  lisa@littlewitt.com

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Even though he was not listening in class, or using technology appropriately, I literally laughed out loud when I read that text from his special education teacher.  All I could think was, “Go Ian!”  If he could successfully locate Dominos online, place an order, and have it delivered to school, he could have that damn pizza. I would even pay for it! After all, he succeeded in learning yet another functional life skill- which is what we wanted, right?  Though the pizza ordering incident makes him seem more like an advanced teenager, the reality is we (Chad, Grace and I) have been raising a six year old for eight years.

Ian is not always exhibiting first grade behavior, but when he is acting his age, he is often too smart for his own good. We are like undercover CIA agents who are constantly one step ahead, researching new ideas, and always being prepared for his next surprising feat.  During our years of duty, we have learned to never underestimate Ian, even though on a daily basis one of us is summoned to assist with personal hygiene.  Aka, wiping his butt or explaining why shampoo is important.

We are always thinking about what skills he needs for the future and becoming an adult.  For this reason, a functional skills class was added to Ian’s schedule. After all, it certainly made more sense to work on cooking, cleaning and hygiene, as opposed to his participation in World Studies. A course like this is much more applicable for a typical student who has already learned certain skills that might take Ian years to develop.

There is a fine line between teaching Ian something new that provides independence, yet does not allow him to take advantage of a situation. Using technology to advance his own personal agenda would top this list.

No matter what device, Chad’s Kindle, the Mac in the kitchen or his own ipad, he is more tech savvy than us adults. He has yet to master third grade math, but who needs that when you are capable enough to run your world from an ipad.

When he was young, the ipad was purchased solely as a communication device with a speech app to help Ian talk and share his emotions.  As he grew and became more savvy, it turned into a portal for ordering toys on Amazon and calling anyone on Facetime at 5 am.  Sure, the ipad has its place for playing innocent games and indulging in reality TV shows; however, we still find him sneaking on to WWE to watch the latest wrestling smack-down. Despite all of our efforts, he has found ways to hack into the settings and change his password so that we are unable to get in. Of course he then brags about it and refuses to reveal this new, creative password. As a result, multiple times we have had to return the ipad to its factory settings – a dirty word in my book.

For our survival, we have learned more about the ipad and parental controls than we ever knew possible or even imagined.  Again, CIA training comes to mind here. We have truly become experts in setting time limits, increasing restrictions and even hiding apps from Ian. In doing so, we sometimes cannot locate them ourselves – considering our memories are not that great anymore.  Ian, on the other hand, has a scary good memory that surprises us and others.  Lesson: do not tell Ian any code or password…ever.

Speaking of memorized codes.  A few years ago, our neighbor showed up at our door with an odd look on her face.  She explained, “Recently I have been coming home after work to an open garage door. Then I walk inside and the back patio is open so our pets are outside.  I know I closed both doors before leaving for work, but of course I began to second guess myself.  After three or four times, it was beginning to concern me.” She continued to describe how one night during their family dinner, without warning the garage door opens and through the door bounds Ian, as if he lives there. “Hi folks!” he blurts out.  

In that moment, all of the mysterious events going on in their house made sense. Apparently her boys told Ian the garage code and underestimated him – which we all do – figuring he would probably forget. I wonder if all the times we allowed him the freedom to go unsupervised to play with the boys, he was actually entering their house and setting their creatures free to roam around the neighborhood.  Needless to say, they changed their garage code and have never told him again. We were once again reminded of how much supervision he needs.

Sometimes the freedom we allow him backfires on us.  For example, biking alone to the school a few blocks away comes to mind. Once again, we are attempting to give him freedom, like other kids his age.  So he takes off, with a tracking tile on both the bike and backpack so we can locate him; yet he is unable to handle using the walkie-talkie to tell us he is safe.  He keeps his finger pressed on the button. Over and over all we hear is, “Dad, can you hear me? Dad, can you hear me?”  At least we know he’s alive. However, we often deploy agent Grace in her black car and sunglasses to stake out the situation from a few blocks away.

Remember, this is the child who memorizes the neighbors’ garage code, but yet he’s not able to communicate with us using a simple walkie-talkie. Though this form of communication is quite ‘old school,’ a cell phone is just not an option. He is smart enough to know that this is the age most kids have cell phones so he has been asking.  Unfortunately, he cannot yet be trusted with this much control.   We wouldn’t put it past him to call Japan or dial 911- which he has accomplished numerous times. I think every police officer in Hudson knows Ian by name. There has yet to be an actual emergency, but Ian just thinks it might be fun to have a squad car or two arrive at his house.  With the cell phone option on hold for at least another year, I guess we will have to work on walkie-talkie 101.

He may not be able to use simple technology, but watch out when it comes to Nintendo Switch and Wii.  Despite the amount of reading and strategy to play many of these games, he can maneuver through levels with ease, while I’m not even sure how to turn the system on.  I have, however, finally outsmarted him at his own game. I have three words for you – Alexa Smart Plug. This comes in handy when he absolutely refuses, under any condition, to stop and do what we are asking.  He is bigger and stronger, so trying to physically handle him does not work.  I simply pick up my phone, locate the Alexa app (I love you, Alexa) and click OFF for that plug.  I am so pleased with myself, you would think I just shut down the entire city’s power grid.  Wish I could see his face when it all goes black. I did win this battle, but he will no doubt win the next one.

*We would love to hear your ‘smarter than their own good’ stories.  Comment below or email me if you would rather be private.  lisa@littlewitt.com

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Ian is still working on composing good sentences, asking appropriate questions and being able to carry on a conversation.  Most kids have this ability during the early elementary years. This presents a challenging for us, as we do not always know what he is really thinking.

Lately when I am frustrated with him, I take a step back, put myself in his shoes and look at life through his eyes.

If Ian could share his thoughts and feelings, I think this is what he would want me to know:

 

Dear Mom,

I am your son.  Maybe not the son you may have expected, or a son like other sons your friends have, but I am YOURS.

I am a boy with an extra chromosome, and that makes me uniquely who I am.

I am 14, but many times I act four, but I can’t help it.

 

I am proud of how I look, even though I have Alopecia and am losing my hair. I do not understand why.

I am proud of how I can bike really fast, even though I still need training wheels.

I am proud to be on the cross country team, even though I am almost always the last kid to cross the finish line.

I am proud to be Grace’s little brother, even though I embarrass her sometimes.

I am proud of my reading and math progress, even though I am only at a 2nd grade level.

 

I love sports and being active, though I do not always understand the need to follow the rules.

I love being with other kids, though I sometimes act mean or selfish.  

I love doing things on my own, but sometimes you stop me because it is not right.

I love to talk with you. I know it bothers you because I ask the same questions, but I do not have that many.

I love school, though I wish I could go to class on my own, without an aide always watching me.

I love to have a sitter with me at home so you can work, but sometimes I just want to be alone.

 

I see what other kids my age can do and wonder why I am not allowed to.

I see kids hanging out at the playground with no parent, or going to sleepovers, but not me.

I see other kids with cell phones and freedom that I cannot experience yet.  That bugs me.

I see how other kids stay home alone, or go around the neighborhood by themselves, but I always have someone with me.

 

Some of these things make me sad and confused, but I do not know how to tell you, so sometimes I misbehave, or call you names or act like I don’t care.

I feel like any other 14 year old.  My body is changing and I am trying to be a ‘big’ boy.

Through my eyes I am no different, yet I know I am.

 

Right now, I need YOU.

I need you to let go a little bit and let me see what I can do.

I need you to worry less about what my future may bring, because I know I can do anything.

I need you to spend more time with me, even though I know you are tired of ‘playing’ with a little kid.

I need you to accept me. 

I need you to see me.

And I need you to love me exactly for who I am, because I DO!

 

Love, Ian

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Chad and I were out for a walk when we first learned that school was closing for a few weeks due to COVID 19. I can still feel the sick wave that came over me as I thought about having Ian at home ALL DAY! You know that feeling, right?  A mix of the unknown, paired with a little ‘that makes sense,’ while still thinking ‘how the hell are we going to do this?’

It has proven to be a huge challenge, as we have needed to change many things in how we relate to Ian and our expectations. I have to be honest, even though I love spending time with Ian, fourteen hours a day is beyond exhausting. Then there is the ongoing guilt that I am not doing enough schooling, or playing enough games, or just meeting his needs in general.  After all, his whole world has been taken away, and he truly doesn’t understand. The problem is, my whole world, as I knew it, is gone too.

The first few weeks were a blur as we stumbled through just trying to create a plan that worked for Ian. I knew for sure he needed an hourly schedule, and quite honestly, so did I for my sanity.  I quickly searched for my big 3M wipe off poster that I could stick up in the kitchen. Yep, complete with this lovely new decor, we started planning what our days would look like.

After the first week or two, the schedule began to take form. Not surprisingly, it did not end up including our original ideal schedule or the same amount of time on each subject as his regular classes had entailed. As much as I would love for him to do more schooling with me, it is not worth the battle.  He refuses to work much with any of us–not me, my husband or his sister Grace, because he does not view us as ‘his teachers.’  I cannot blame him one bit.

I suppose I could forge ahead with mighty determination and set up yet another elaborate reward chart if he sits down with me to do his multiplication, but quite honestly I am tired.  Maybe I am copping out, but I figure there is a lot of learning just being at home, and that may be as valuable as anything learned from a book, right?  Sanity Saving vs. Battle of Wills?

Eventually, it became clear that maybe with a little planning [and wine], we could get through this together. With all of us at home now, each of us helps with Ian on and off throughout the day, taking turns playing games, preparing his lunches, and supervising him every minute.

Yes, though he is fourteen, his extra chromosome often causes many aspects of his brain to be more like that of a four year old.  Leaving him alone often results in rough play with cats [which they very much dislike], cutting a hole in his bedroom window screen out of anger, or Face timing a family member again and again.

As the few weeks turned into a month, it then turned into the kids not going back to school at all. My emotions are now running high.  Ian has lost the end of his 7th grade year, which was going so amazing, and Grace’s senior year has abruptly halted with no warning. It has started to feel to me like the world is coming to an end. My world at least.

One morning after having stopped my workout for the tenth time (I am not exaggerating!) Ian finally went upstairs and was behaving.  I sat down, looked around to make sure I was alone, and just started to cry.  Why does every single thing always need to be so hard?  No matter what I concoct at home, the bottom line is that Ian thrives on the school environment with all of the kids and the activities. We cannot mimic that at home to any degree.  He simply misses his amazing special education teacher, his friends and his routine.

Of course, I had only a few minutes to wrap that crying jag up, wipe my eyes, and pull it together.  Typical motherhood, huh? My friend Teresa hit the nail on the head when she shared how she was handling being home with her son Nick, who also has Down Syndrome.  Ian and Nick have been good buddies since they were little.

“I think it’s just a balance issue. At school Nick has five to ten adults guiding him through his day and assisting him one on one. Here, it’s just me, trying to be a patient teacher and working at the same time. Not enough of me to go around.“

I never thought about it this way, but it makes perfect sense. School provided so much wonderful support throughout the day helping kids like Ian and Nick navigate from one activity to the next, stay motivated and stay on track. They often have a new aide every hour who is fresh and ready to motivate them.  After starting my day at 6 am making Ian’s Big Nasty (a quesadilla with everything in the fridge), I can tell you I am not ‘fresh’ at 4 pm. No wonder I fall asleep at 8 o’clock on the couch.

Though I am trying to enjoy each day and the special time with both kids, I still look forward to the day Ian walks out the door to hop on the bus waiting for him at the end of the driveway. Off he will go, with his backpack on, wearing a big smile on his face while jamming on his iPod to Taylor Swift!  While he may not be able to articulate it. we are both excited for that moment!

When that bus drives off…a celebration with some of my close friends will be in order.  Complete with Mimosas and Bloody Marys! Anyone want to join me?

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We would all love to hear about your challenges during this time.  And any tips of things that worked for you or counsel on how you have adapted and survived, and maybe even thrived in COVID. All ideas are very welcome! We are IN THIS TOGETHER!

CLICK ON THE WORDS “COMMENTS” BELOW TO SHARE!

I know many of your have LOTS to say about your life, family & experiences but would rather not post for all to see.  I really get that, so instead PLEASE email me. I really want to hear from YOU! lisa@littlewitt.com

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