Ian is still working on composing good sentences, asking appropriate questions and being able to carry on a conversation.  Most kids have this ability in the early elementary years, so often this is challenging for us to not know what he is really thinking.

Lately when I am frustrated with him, I take a step back and I 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 (us) 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

 

Sometimes life surprises me, and what I thought would be a bummer due to the pandemic, ends up being the BEST birthday ever!  Ian turned fourteen on April 18th and, like any parent, I wanted to make sure it was special. 

As per usual, I purchased the gifts, planned the meal (ok, we ordered Dominos), and bought 14 balloons to attach to a special birthday sign that has donned the front yard each year since he turned one.  

All of this was great, but what about the party Ian and Chad always plan?  The last few years, Ian has requested a “Dads and Dudes” party at a bar and grill in downtown Hudson.  In other words, NO GIRLS ALLOWED!  I must admit, I love the few hours to myself when they excitedly head off to the coveted event.  

Knowing Ian’s special tradition cannot happen with social distancing in place, I wonder, how do I bring the party to Ian?  While flipping through Facebook, I notice people having “drive-by birthday parades.”  Instantly I loved this concept, so I hopped on social media to ask our family and friends to help us celebrate.

On that birthday Saturday morning, we lured Ian outside to race his remote cars up and down the driveway.  We lucked out, with blue skies and sunshine. Ian had no idea what was about to happen.  I already felt so blessed.

One by one, cars began to drive by. Families were yelling out of windows, honking horns like crazy, and handing colorful signs to Ian. I was already tearing up.  Our neighbors next door were outside at the time, and the mom reached out to us and asked if we wanted her to use her connections to call the Hudson police and invite them to join in the parade. I was touched by this act of kindness.

About ten minutes later, five police cars came blazing down the street one after the other.  It turned out Ian knows Officer Wilman from middle school, so when he pulled up and got out, Ian was thrilled!

Just when we thought the party couldn’t get any better, a friend of mine (whose son is Ian’s aide) saw my plea and went above and beyond.  She posted the birthday request on her Facebook page and solicited most of the Hudson Hockey team to participate. 

The next thing we know, a long line of vehicles was headed our way.  Everyone handed gifts out of car windows, and the sound of revving sports cars and, “Happy Birthday Ian!” filled the air. A surprise lunch of Jimmy John’s was even delivered.  The front yard was now covered with batches of colorful balloons and posters that later filled Ian’s bedroom with life.

This celebration would not be complete without a visit from his special education teacher, a lick from Henry (our good friend’s dog), and a parade float with live music and long-time friends singing Ian’s favorite song.

What happened that day took my breath away!  

Saying ‘thank you’ does not even come close to truly conveying my gratitude.  

I can imagine Ian next year, sitting on the driveway on April 18th and asking, “when does my parade start?”  

As a mom who spends her days with this challenging boy, knowing that there are so many people out there who love and care about Ian, fills my heart with hope, light and love. I am reminded once again that I am NOT alone.

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What are your SILVER LININGS?  Any special celebrations that have made this difficult time a little brighter? I would love to have you share them with us!

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Chad and I were out for a walk when we first learned that school was closing for a few weeks. 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?’

And it has proven to be a huge challenge where 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 Facetiming 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.

As each day comes to a close, which I am thankful for at this point, I have often been puzzled why I am feeling  so tired.  I suppose the emotional energy that goes into all of this takes its toll. Unlike many others, I am not working full-time from home.   My company, WittFitt, provides active furniture for schools, so we are quite slow with the schools shut down across the country. I also miss connecting with teachers and feeling financially secure, of course. Even so, I am thankful for this extra time  since my days are now full managing the little fires with Ian that arise almost hourly.

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!

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Welcome Ian

48 hours old.  Less than 4 pounds.  

“So, two things,” the doctor nonchalantly reports,  “Ian needs to have surgery to fix a blockage in his intestines, and you are aware that he has Down Syndrome, right?

At that moment, time stops.  It is so unreal.  My husband, Chad and I are sitting in the NICU waiting room at Children’s Hospital in shock.

Surgery?  Down Syndrome?  

I flash back to two days earlier at Hudson Hospital.  Seconds after he was born, we immediately asked, “Does he have Down Syndrome?” since the Triple Screen Test during my pregnancy had indicated it was a possibility.  

The doctor and nurse confidently assured us Ian looked great. His Apgar scores were high and he was perfectly normal.  A wave of relief, but too soon, something was wrong!  Ian was throwing up breast milk, and he had not pooped.  I knew something was threatening his life . . . which is why he ended up so soon at Children’s Hospital.

Snapping back to reality, I focus on the sketch the surgeon is creating on the computer screen as he details the procedure–Duodenal atresia–which should correct Ian’s blocked intestines.  A flash of panic comes over me not about Down Syndrome, but about his life. Will he die in this surgery? He is too little.  Too fragile.  

Our eyes drift from sketches to peer into Ian’s dark room, which appears to be engulfing his little ‘glass house”.  Glowing a calming blue with him inside. The special effects were really from the Bilirubin lights due to his jaundice, but they seem to display him as extraordinary from the beginning.

Then my mind quickly switches gears again, not able to truly comprehend the two sentences we’ve just heard.  He doesn’t even look like he has Down Syndrome.  These doctors must be mistaken.  Tears well up in my eyes. My mind is flooded with a million questions floating in a wave of confusion.  

Chad senses this and takes my hand. “One thing at a time.  Let’s think about the surgery first and the Down Syndrome part later.”  

He is the voice of reason at that moment,  knowing exactly what I need to hear. 

Well, the doctors at Children’s Hospital turn out to be right.  Ian does have a special super power– that extra chromosome on the 21st.

I hate to admit it, but think I would have fallen into despair if, seconds after birth, we had been told he had something “not quite right” with him. I would have focused on that abstract worry about what that meant, instead of focusing on how beautiful he was no matter what.  

The first two days not knowing he was any different from any other baby, we fell in love, as all parents do.  Those few days, almost a grace period, allowed me not to rush ahead and imagine his life, but to let it unfold.  Fourteen years later, he is a strong, smart, and incredibly stubborn boy, but I still remind myself daily to ‘let go’ and trust the journey.

I believe with all of my heart that these days were created perfectly for me.  When the doctors did confirm he had Down Syndrome, I was ready to absorb what that meant.  Looking back, knowing what I now know,  I would love to tell my earlier self, “It’s ok, Ian will be challenging, but you will be a better person for being his mom.”

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What do you remember of your child’s unique birth story?  And how did your beginnings together affect you?

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