Friday, April 4, 2014

Spring Concert by Rachel Nemhauser

My socks are starting to dry out, the mud puddle in my driveway is shrinking, and my husband has started to sneeze.  It is finally Springtime in Washington, and that can only mean one thing: School Concert Season!

I know you know what I'm talking about.  The time of year when all the 3rd and 4th graders come together one evening and perform a variety of musical numbers for all their parents and loved ones. It is a fun evening of performance, friendship, community, and beautiful music.

Attending the yearly school concert can be hard for me for a few reasons, but mostly because I never know what Nate will do while on a stage in front of 200 people.  Will he make a scene? Will he pull his pants down?  Will he announce from the stage that he's ready to go home? Will he walk right off the stage and disappear into the crowd? Any of those things are possible, along with an infinite number of possibilities I've yet to envision. I've lived in fear of the moment I might have to run from the audience onto the risers to stop him from doing something silly or inappropriate. Please don't make me have to wrestle my son, pants-less and screeching, off the elementary school stage!

Thanks to an amazingly supportive and forward thinking school team (Spiritridge, I'm talking to you), this year Nate had a para-educator assigned to stay with him during the performance.  This meant that for the first time I was able to sit in the audience and enjoy the show, knowing he would be supervised and attended to the entire time.

video
As you can see, Nate had a whole lot of fun.  He loved being in front of the audience, and he loved standing shoulder to shoulder with his classmates. He loved getting some laughs and he loved wearing his dressy shirt.  Clearly, the kid is thrilled. I watched his performance while trying not to laugh out loud, or to notice the parents in the audience that were looking at me. I was kind of thrilled too.

As those who know and love him have pointed out, Nate's performance exudes joy.  He's not making trouble, he's only being minimally disruptive, and he's happy as can be. Nate's being Nate, even when in front of 200 people, and I am so incredibly proud.

Share your Spring Concert experiences!

Frustration by Sue Searles

Frustration is the word that keeps coming to my mind today, as Luke is still dealing with high fevers and not seeming to get better...

Fevers   Luke's fevers are almost constantly above 102 and often above 103, we continue to give him Ibuprofen and Tylenol around the clock, nothing seems to help. I keep hoping we are not doing damage to his kidneys.

Respiratory problems continue, he is on at least 3 to 5 liters of oxygen all the time, still needing to be suctioned and coughed often.

Unsure if we are still just dealing with the FLU or if he's contracted a secondary infection as his white blood count was double on Tuesday what it had been on Sunday when he left the hospital.

Sleep deprived   That is exactly what Luke is as he has not been sleeping good since they took him off the ventilator, sometimes he goes 30 hours before sleeping, Gordy and I are also very sleep deprived too as we have been having to keep his meds and suctioning going around the clock.

Totally not sure if we made the right decision to bring him home on Sunday from the Hospital. It seemed like the right thing to do that day since his fever had come down that one day.

Really high heart rate   Luke's heart rate has continued to stay high, which we are sure is a result of his fevers and pain, though we're not sure where the pain is coming from, which is so hard!

Action vs. non action   Do I keep pushing doctors and the hospital to do something or do we just have to wait out the flu, which I've heard can last at least two weeks?

Trying to be patient today as I've waiting all day long for a call back from his Dr.'s office to see what we should do, if anything new.

Increased muscle spasms and constant jerking, Luke looks like he's in constant pain and discomfort which is so hard to see.

Ongoing   This sickness seems like it's never going to end.



Not wanting  to give up on God, though can I be honest to say at times I wonder if He's really hearing our prayers. I know that's crazy and NOT true but I'm just keeping it real. I'm so thankful that when we are wavering in our faith we have so many people that stay strong to carry us along.

Read more about Sue and her family at http://howsluke.blogspot.com/.

Thursday, March 27, 2014

These Days by Rachel Nemhauser

In case I haven’t yet been clear, being Nate’s mom can be really, really hard sometimes.  He can make a leisurely, sunshine-filled Sunday afternoon feel endless and burdensome, and turn a trip to the grocery store into an exercise in patience and humility. He can turn a casual family dinner into a tornado and a car ride into chaos.  He’s exceptionally skilled at finding the one thing in any room you really don’t want him to touch, and he’s almost impossible to redirect. He’s messy, and his style of mess often leads to permanent damage, like non-commissioned Sharpie wall-art or cracked plumbing.  He’s smart, he’s a troublemaker, and he’s had 8 years of occupational therapy.  Don’t underestimate that combination!

Please be assured I love Nate powerfully and wholly. I love him so much that his laugh can still give me goose bumps and his profile sometimes gets me choked up.  I love his mischief, I love his way of talking, I love his snuggles and I love his red hair.  I love him so much that, even when he’s being his most annoying, I still love him.  Most of the time my love for him completely dwarfs the other stuff.
But this is not about the times my love dwarfs the other stuff.  This is about when the other stuff wins.  About the times when Nate makes a leisurely Sunday impossible. When he has just clogged a toilet with an entire roll of toilet paper, and spilled milk on his bed and sprayed sunscreen on the windows and hit his brother and locked the cat in the bedroom and managed to get the child-proof cap off the gummy vitamins and it’s not even 9 a.m. yet. I’m talking about those days. 
The days where it isn’t cute and funny anymore. The days where Isaac really needs help with his math homework but I can’t take my eyes off of Nate for 5 minutes. The days where he talks without stopping for an entire car ride about Scooby Doo and zombies and setting traps, and starts screeching if anyone tries to talk about something else.  The days where he screams loudly, publically and often or overflows the bathtub after dumping an entire bottle of shampoo in the water.
These are the days I wonder if we’re doing it all wrong.  If we’re pushing him hard enough. If our approach is not working. These are the days I can spiral into a sea of second guessing and self-doubt.  The days my heart hurts for Isaac, and I see, clear-eyed and certain, that our family has it harder than other families and it’s really not fair. The days when I feel sad, worn out and at the end of my rope. The days when Nate’s bedtime hangs like a lush green mirage in the ever-distant future, sure to bring abbreviated bedtime stories and only the briefest of snuggles once it finally arrives.
As Nate’s mom there is no avoiding these days. Rather, I make sure I have a plan for when they come. I have other moms to talk to, moms who have had these days and can assure me my family isn’t the only one.  I have loved ones to talk and laugh with, ample opportunities to get away for a while, a dog who loves to take long walks with me, and breathing techniques for when I’m about to throw something through a window. It’s a delicate balance that works for me. 
I know I’m not the only one who has days (or weeks or months) like this, and I know that knowing that helps a lot.  Please share your experiences, and what works for you on those days. I’d love to hear from you!

Thursday, February 27, 2014

The Thrill Of Connection

One of the most rewarding, fascinating and frustrating parts of being a parent of any child is seeing echoes of yourself and your loved one emerge as he or she grows up. Isaac, our oldest son, behaves so much like me at times that I have to be reminded to not assume he is re-living my life. I see facial expressions that remind me of my wife's family. I see empathy and compassion that remind me of my mom. We reach a deep level of understanding about who he is by observing his life, and through conversations that become deeper and more meaningful as he gets older. It gives us a chance to not only see his nature, but attempt to nurture and influence. Nate is different. His communication skills have never been strong, leaving us largely to play a nine-year game of charades where blood-curdling screams mean "wrong" and that impossibly awesome smile means jackpot. When the goal is just trying to find out whether he wants Scooby-Doo or Teen Titans, dreams of deeper dialogue that can lead to meaningful connections begins to fade. We have not risen that far off the floor of Maslow's hierarchy of needs. But like all of life's wonders, it is the contrast between the expected and the actual that create magic. This is one such story.

Wednesday, February 26, 2014

Nate Syndrome by Rachel Nemhauser

There was a day, an actual moment in time, when I came to understand that Nate was not going to be a typical kid.  After three years of wondering, worrying, comparing, researching, denying, and pretending, I finally believed and accepted it.  Peace and pride would come later, but by the time Nate was three I had at least settled upon the understanding that the developmental delays and behavior challenges weren't going away any time soon, and IEP meetings, waiting rooms and therapy offices were going to be "my thing" for a while.

Of course, after coming to this conclusion, my obsessive focus switched from wondering if he's "normal" to wondering why he wasn't. Was this autism I was dealing with? Did he have a genetic disorder?  Metabolic disorder? Something regressive? Something fatal?! Every disability I heard of became the one I was sure he had. Around that time, one of Nate's teachers told me that "there is always an explanation", and so my husband and I set out to find one.

And thus began the very long and expensive quest to find a name, an explanation, a reason, for why Nate was the way he was. We had doctors visits, neurodevelopmental evaluations, brain scans, genetic screenings, blood tests, more doctors appointments, medical consultations and more doctors appointments. Not a single one of those meetings were easy, and in fact I would probably describe them as akin to the worst psychological torture used in international espionage. Every appointment required reliving Nate's developmentally and physically challenging first three years in gruesome detail. We had to watch as doctors picked apart his facial features, trying to identify genetic disorder indicators from his beautiful face.  They studied his creamy skin, wondering about metabolic disorders. We held him, screaming, while they drew vial after vial of blood to study. We delved into our family genetic and medical history, searching for similar issues in past generations.  We listened to stacks of numbers, quantifying his chances of having this disorder or that syndrome.


You won't believe what we discovered.  Brace yourself.  We found out .... nothing.  Hours of appointments, tests, and conversations, and the overwhelming consensus was that there was no explanation for why Nate was the way he was.  He's too socially connected to be autistic.  His genes look normal.  His dry skin is just dry skin. And his face is just his (really cute) face.

Fast forward 5 years, and we still don't have answers.  In fact, we long ago stopped looking.  Somehow, with years of effort and learning and loving, we decided we didn't need to know.  Nate has developmental delays that need to be addressed, and we address them.  He has special learning needs and we make sure his school is meeting them. Nate's behavior is challenging so we work on it, one behavior at a time. We focus on his skills and deficits, and the "why" has proved irrelevant.

I couldn't have predicted it, but I am really OK having no explanation for why Nate is the way he is.  For me, having no diagnosis has meant no one is placing limits on him, predicting his future abilities, offering discouraging statistics and resorting to negative stereotypes. In our family, having no diagnosis prevents a "one size fits all" approach to treatment and education, and encourages people to get to know my child as a person, and not as a disability.

There is no one like Nate.  His particular set of gifts and batch of deficits are so utterly unique to him that no doctor in Western Washington can figure him out. We don't know what his future will look like, but today I'm OK with that. Like all parents, we'll just keep plugging away, helping Nate grow to be the best Nate he can be. I await his future with baited breath. 

Monday, December 23, 2013

The Missing Piece (A Mom's Perspective on Traveling with a Child with Disabilities) by Rachel Nemhauser

I just returned from visiting my family on the other side of the country and I had a really great time. I lingered over steaming coffee (not as good as Seattle's, but good enough) and the best bagels Long Island has to offer.  I caught up on family news and stories, successes and setbacks, highs and lows.  I held my baby nephew for a long, cuddly time, getting my fill of his weight in my arms and his gorgeous grey eyes. I ate at my favorite restaurants, took long, winding car rides, and laughed a whole lot. Like real, hearty, belly-ache laughing. I flew home at the end of the 3 days feeling refreshed and reconnected, happily a part of a large and loving extended family.

Wait a minute - something's not right. My annual visits aren't usually like this. Usually I experience rushed meals, snippets of conversations, cold coffee and full body exhaustion.  Hmmm. Weird. Why would this visit be different then the others? Why did this visit leave me energized and not drained, connected and not frustrated? What a puzzle...

Wait, I got it!  A certain red-headed, slightly mischievous nine-year-old wasn't there.  Nate was home with his dad and brother, and I was visiting on my own.

There is nothing earth shattering about the assertion that traveling with kids is difficult, and traveling without kids is easier and more relaxing in comparison.  However, when you add a child with disabilities into the traveling mix, the difference is almost incalculable.  For us, visiting our family means security lines, a 6 hour plane trip, long car rides, spending a lot of time in homes that aren't Nate-proofed, lingering meals at quiet restaurants, and well-meaning family members who don't always understand.

Taking Nate to visit family is more than just extra work.  It's seeing him and his deficits through the eyes of people who don't spend very much time with him.  It's explaining why he does what he does, and why we respond like we do.  It's making sure Nate's brother gets the attention he deserves from his extended family, even when Nate seems to demand every ounce of everyone's attention all day long.  It means skipping certain outings that just won't work for our family, or leaving early from others.  It means seeing younger cousins' development skyrocket past Nate's, more notable because of the long separations.  At moments it can be gut-wrenching, to tell you the truth.

I was reminded this week that every once in a while I really need a trip by myself so I can connect and relax and have fun with my long-distance loved ones.  Most of the time, though, when I climb aboard a plane and head east, I'll have my mischievous red-head by my side. He's a part of my extended family, chaos and all. He's loved, he's missed, and he's needed. He's part of what makes our family who we are, and without him there is a piece of joy missing.

Happy holidays and happy New Year!  Enjoy your time with your family, wherever they are!



Saturday, November 2, 2013

I Don't Know How You Do It by Rachel Nemhauser

Let me set the scene: I'm at the grocery store with Nate, waiting in line to check out.  While we wait, Nate's ever-busy little hands grab a candy bar off the shelf.  I take it out of his hand and put it back. He screams in his shrieky way that makes everyone stop and look.  I try to hush him and he grabs a magazine and throws it on the floor.  I ask him to pick it up and he screams again. I unload the groceries onto the conveyor belt and he puts them back into the cart before they're scanned. Basically, he's turning grocery shopping into an endurance sport that is testing every limit of my patience and good humor.

By the time we're at the front of the line I'm sweaty and frustrated, and that is when the woman behind me in line chimes in with "I don't know how you do it!"  Not this again.

I get "I don't know how you do it" a lot, accompanied by a sympathetic smile or a pat on the back. Sometimes there's a hug, sometimes followed by a "Wow! You have so much patience". Sometimes by a stranger and sometimes by a loved one.

I hate when people say that to me.

Perhaps it's because "doing it" was never a choice I was given. No one asked me, before I conceived Nate, whether I'd be interested in making grocery shopping infinitely more agonizing and embarrassing for the next 20 years. No one asked me if I'd like dinners to be tornado-like, or getting my child dressed to be a full-contact sport. Sometimes I'm not sure how I do it either, but groceries need to be purchased, kids need to go to school in clothes, and we all have to eat.  I do it because it has to be done.

Maybe "I don't know how you do it" gets to me because it reminds me that what I'm doing is harder than it is for some other parents. While most people don't like to take their 9 year old grocery shopping, I know that most parents aren't dealing with what I'm dealing with when we shop. However, if I walked around all day dwelling on that I'd be a pretty miserable person.  "I don't know how you do it" takes me out of "denial" mode and into "reality" mode, and I don't always feel up for that!

But here is why it really gets to me. "I don't know how you do it" implies that what I have is worse than what you have, and that is absolutely NOT how I view my child.  Tougher? Yep. More frustrating? Probably. More labor intensive?  Absolutely.  Worse? Not by a long shot.

Because at the end of the day, I get to have Nate and no one else does.  I get to hear him laugh, and watch him learn, and brush his glowing orange hair.  I get to snuggle with him and smell his neck and take him trick-or-treating. I get to watch him squeal with delight as leaves swirl down from trees, or when our cat licks his face.

Difficult behavior is an unfortunate down-side of an awesome kid. If you find yourself not knowing how I do it you just might not know Nate well enough.  I promise you that if you knew him better, you would know exactly how I do it.