We are “that” family… Pa’auwtism’ Awareness

April 2, 2018
by Tim Paauw

Our family is quite unique. What do I mean by that?…

Rule #1 with Autism Awareness: When you have met someone with autism… you have met ONE PERSON with autism. Since our two sons have been diagnosed, if you have met our family – you have met two individuals with autism.

So, here is a little Pa’auwtism’ Awareness today.

We are “that” family that you see in public and aren’t quite sure whether to stare, offer help, or remind your kids not to stare and walk away. Statistically, option three is what people choose as often the following thoughts overwhelm, “I don’t want to offend. I am not trained in this! I may only make things worse…”

Both of our boys have been diagnosed on the autism spectrum. The first time someone hears this usually one of the following types of comments comes up:  “I’m sorry”,  “Oh! What superpower do they have?”, “But your child isn’t severely autistic, right?”

I smile as I write this, because those questions and thoughts are normal. Those thoughts are okay. Believe me, we have at times even had a few of those thoughts ourselves. We didn’t sign up for the autism journey, but we sure enjoy our tour guides! Those with family members with an Autism Spectrum Disorder (ASD) need to learn to be more gracious and not quick to return a judgement when people sort through how to get involved or help. Your sorting through options and building awareness is the heart of what it means to say “Autism-Awareness”. As a dad of 2 with autism, I’d submit to you that you are equally qualified to be involved in my boys’ lives- simply include them. Flexibility is the qualification. If you are willing to adapt from what you are normally used to doing and find the joy of the moment with the person rather than focusing on an outcome of an expected task- you are qualified and your heart will be blessed.

I’d encourage you to re-think your question to someone who has autism and instead of asking “How bad is it?” Rephrase that question to be more of a learning opportunity for you in understanding that particular person, “Oh, I know that autism is a spectrum that impacts social, behavioral, and language stuff. What are a few things you have done recently or noticed lately where you have had to make a few flexible changes based on your autism?”… “What is one thing I can keep in mind as your friend in order to encourage you?” (Remember, some with ASD are non-verbal so rather than asking – take time to observe and attempt to interact in their setting as they allow you to do so).

Here are some examples of ‘abnormalities’ that have taken flexibility in Paauw-lifestyle. Often you will find our boys flapping, stimming, and sometimes forgetting to wear shoes or decide not to wear a coat in the winter when they are in public settings. In our family… We only attend “sensory friendly” movies and look for events that we know will not have large crowds. We have a room next to the main auditorium in our church where our family participates for worship – it has lights that dim, a sound dial to adjust volume to the room, and windows into the service. As a whole family, we rarely visit a restaurant with a server because of the possibility of a meltdown with one of our boys before we’re finished. We don’t often stay in hotels or travel more than a few hours from our house so that familiarity and comfort can keep anxiety in check.

Disney World sounds like a nightmare not a fairytale. Fourth of July Fireworks celebrations do not bring about positive thoughts of freedom but rather lead to covering of ears and sometimes sleepless nights. Laura will preview every park in the area before a playdate as part of planning to make sure it is fenced so wandering can’t happen and supervision is possible, also making sure there isn’t a lake or pond nearby since our boys are drawn to water and the statistics of autism drownings are staggering (our nightmare) – side note, if you notice someone with autism missing ALWAYS CHECK THE NEAREST WATER FIRST.

I snuggle our youngest son sometimes for all hours of the night because sleeplessness is a common occurrence with our boys’ autism – therefore often sleeplessness is a common occurrence for all of us in the family. Laura meets for a few hours weekly with a behavioral specialist as part of our insurance company’s requirement in order for our ABA therapy to be provided for both boys. When added together, our two boys receive more than 35 hours a week of therapies… that is less than they likely need but as much as we can figure out in our weekly schedules. Laura and I have both seen the movie Curious George over 100 times because it is both of our sons’ favorite movie. We have seen Leapfrog’s Alphabet shows on repeat (sometimes just the theme-songs on repeat) and notice our 3 year old spelling complex words and sounding them out as a component of this joy.

We pray daily for our boys to know Jesus more and to make/keep friends without getting picked on or teased. We celebrate things that seem little to others, like when our 7-year-old learned to zip his coat for the first time this past week and used the words “zip my coat”!

As I write, I am visualizing the words found in the beginning of Hebrews 12 of the Bible. My heart is overwhelmed with gratitude for the “great cloud of witnesses” that surround our family and help us with endurance and join in the race – my boys, all those with varying abilities and perspectives on life – are part of the body of Christ found in 1 Corinthians 12.

So, I’ll end this blog-post with a shout out and some THANK YOU’s to those who have thrown the question, “Am I qualified for this?” to the wind and made the decision to simply befriend us. Our family has a few key ladies (you know who you are) who have babysat our kids regularly regardless of what that may have entailed when they first agreed – to you we are eternally grateful. We consider you family and our boys consider you some of their closest friends.

To the amazing team at West Side Christian School who works with Nolan daily, we owe you our heartfelt thanks daily. You continue to teach him about Christ and Christlike love, while ensuring that his peers are aware and empathetic, becoming friends who are not ignorant but do ignore the ‘odd’ side of autism.

Margie Hayward, Rachel Bhuyan, and the many technicians at West Michigan Behavioral Analysts who know our boys and have patience unending as you teach them things we simply didn’t think were ever going to be possible – THANK YOU!!

Brothers and Sisters at our church, Redeemer Presbyterian Church in Ada Michigan – THANK YOU for smiling with us and continuing to figure out ways to show Christ to our boys. Even on those Sundays where we forget to wear shoes to church. 😉

Family memers of ours – you are all simply Pa’au’wsome! Thank you for loving us unconditionally. For both sets of parents who literally live in the neighborhood so that we can figure out life together. For those in California, thank you for coming to Michigan to see us as we aren’t always able to make the flight.  Thank you for allowing us to visit you at your cottage since the boys consider it home-away-from-home and view you as the king and queen of hospitality and love! For Leah – thank you for saying yes to staying with us on your visit to town this week (that was brave and showed the ultimate care). For those on both sides of our family living in other states who check in on Facebook often and pray behind the scenes for us daily – thank you!

To the many others that we interact with in a given week and to the strangers who simply don’t view us as ‘strange’… THANK YOU!!!

Most of all – to our daughter, Kathryn. She is the most empathetic person you will ever meet and her brothers’ leading advocate. She can explain autism in kid-friendly language and knows how to show her brothers they are her best friends. We could not have asked God for a better blessing in life than her. She wears blue on April 2 with pride. She includes her brothers in all activities. She will leave any situation early even if she is having a blast in order to make sure her brothers aren’t overwhelmed. When I look at the fruit of God’s Spirit: Love, Joy, Peace, Patience, Kindness, Goodness, Gentleness, and Self Control… she has it all as she shines Christ’s spirit to her brothers. Praise be to God.

Perspectives ~ Diversability.

What is “diversability”? Could it be possible that a different kind of beauty exists and we are missing it in the midst of our daily rush?

By Tim & Laura Paauw
8/6/17

“A child with autism isn’t ignoring you.
They are waiting for you to enter their world.”

This is a phrase commonly seen on autism advocacy/awareness websites. It helps build understanding that someone with an autistic brain sees the world differently, viewed with heightened senses and commonly engaged in scenery that many other people miss.

Laura and I believe that we need to stop calling autism a “disability” and start calling it what it is, “diversability.” Perhaps our society should pause more often and reflect on the world surrounding us at a different level than the fast paced life many of us live. In doing so, we may begin to see the world differently too. Could it be possible that there is a different kind of beauty that many miss in their daily rush?

Here are a few perspectives that Laura and I have reflected on in the past summer months. You may agree or disagree, our goal is simply to challenge the ordinary perspective on behalf of our son Nolan.

Laura Paauw: 


The Upper Peninsula (UP) in Michigan is a different kind of beautiful. Some may think this beach scene is rather ugly. It is a place our family visits each year and cannot wait to return. I love looking past the shells, sticks, seaweed, scruffy pines and grass to find its underlying beauty. I think Nolan is such a “Yooper” at heart because he’s a different kind of beautiful too. When you look beyond his stims, language deficit, and lack of eye contact you’ll find his inner beauty. My favorite beach. My favorite boy twin. They’re made for each other because they’re both a different kind of beautiful.

—————————

Tim Paauw:
My pondering thoughts after sitting at a picnic table with our son Nolan for a bit and just soaking up the moment and literally looking at the table together. I wondered what he thought and how he saw it:

Picnic Table
If beauty is in the eye of the beholder,
What is it that you see?

Is it the work of a creator’s design?
Or just another old knot of pine?

Can you feel the age within this wrinkled eye?
Or is it merely a board most will pass on by?

What is it that you observed today?
Better yet, what is it that gets in my way?

Open your eyes, pausing is key.
Look deep, and a brown-eyed beauty you’ll see.

—————————

clouds

Nolan’s favorite place to be is outside. In fact, for a boy with very limited vocabulary, “Outside!” is a word we hear from him often. When we take the time to go for a walk with him and watch where his eyes wander in wonder, it always leads to a unique experience. Sometimes it may be the sunlight peeking through a cloud formation. At other times it takes a while to figure out what is fascinating him for the moment. The other day in our backyard he heard a woodpecker thumping on our tree. He spotted it first. His twin sister, Kathryn, and I figured it out a bit later and it ended up being quite an activity for a while. Kathryn said, “Nolan, I’ve never actually seen a woodpecker before! This is so cool!!!”

So, many would call his long and awkward pauses a disability. When we are trying to accomplish something and find ourselves frustrated by his gazing eye we may get tempted to believe this too. However, every moment we have attempted to step into his world we have been blessed. I would call that a diversability. Maybe our creative God is helping to remind us through people like Nolan to “Be still & know that I am God” as we find in Psalm 46:10.

The Impacts of “Noticing”

By Tim & Laura Paauw
June 14, 2017

1

This past week we have had a couple of scenes play out in our life with Nolan that I believe many with a “diversability” (diversability = experiences the world in a different manner than most people) have regularly. Allow us to paint the two scenes and our feelings that happened behind the scenes, after them we’ll provide a few helpful hints on how we’d play these scenes out differently in our “dream world”…

Scene one: Walking Around Our Block (Tim Paauw)

Last week I took my sons on a walk around our neighborhood block. It is a short distance, but a great chance to get fresh air and be together. The scene was a perfect Michigan early summer day, 75 degrees and sunny.

Neither of my boys can talk… yet. We walk in silence or I do most of the talking, but as we walk we exchange smiles and soak up the beauty all around us. These walking moments are some of the most peace-filled moments in my life and I look forward to the bonding with my boys.

Spring Break

On this particular day, we walked past a dad throwing a ball with his young son in their front yard. The dad was very excited to see Nolan and asked me, “How old is your son?”

“He is six years old turning seven this month,” I responded.

“Oh! My son is the same age. Would your boy like to join mine for some catch?”

“He can’t. He is autistic and hasn’t learned that skill yet,” I let him know (hoping my son wasn’t able to comprehend this comment and interpret it from his own dad as an insult).

“Okay, well I hope you guys enjoy your walk!” said the nice man.

As I walked away I fought back tears. Not because I need a baseball playing son. Not because I’d rather be doing something else besides our silent walk. Because I felt like I had somehow let Nolan down. When I stated it out loud in this context in front of him it felt like I was somehow implying my son was “worth less” than another six year old.  I leaned over to him and gave him a kiss on his forehead as we walked away. I whispered, “Nolan, you are my boy and there is nothing I look forward to in my week than walking around this block with you.”


Scene Two: Visiting the Splash Pad (Laura Paauw)

“Is he yours? What’s wrong? Is he handicapped?” These were the questions that were directed at me this week while I had my three kids at a splash pad. I really just wanted a day to play in the water. I was really excited that I had all of them interested in the same activity at the same time…and nobody was running away or throwing a tantrum. I didn’t want to explain autism, be an educator, or be Nolan’s advocate while at the splash pad. I just wanted to be a normal mom for once.

These questions weren’t asked by a child; they came from a grandma. I understand that adults and kids are curious when they see someone who is different than they are. I wish people would look for the similarities instead of the differences (“Wow! That boy looks like he really loves water and is having a great time! You guys both enjoy the same thing!”) I already know that Nolan stands out in a crowd. Help him blend in by seeing what a cool kid he is instead of pointing out his deficits.


 

Our Dream World: The Power of “I noticed” …

 “I noticed” that when a statement starts with that phrase it can impact how people will feel when they hear what you are going to say. We all want to be noticed at some level in life. When that comes across in a positive situation it can extend well beyond that moment. On the other hand, when we make a comment that implies we only noticed a negative attribute of someone it can also extend well beyond the moment.

When using a “I noticed” sentence it comes across more as an observable fact about someone. It reveals a layer of your thinking that can open up conversation (open dialogue for understanding) or a discussion (two sides aiming more at persuading each other). I believe conversations are the right avenue for learning and building awareness of someone’s diversability.

In scene one above, as a dad I cannot tell you how impressed I was that a neighbor “noticed” Nolan and invited him to join the game they were playing. This was SO heartwarming. I LOVE that the dad took a chance and initiated conversation. This is part of a dream world.

What I wish could have happened (on my end or the other dad’s end) is that we would have established something the six year old boys COULD DO together. We have a trampoline and swingset in our yard… had I been quicker on my feet I should have responded, “I notice that your boy loves being outside as much as mine. We’d love to have you guys over so they could jump on the trampoline together sometime!”

We missed an opportunity to turn an awkward interaction into an inclusive one. Had “I noticed” more quickly we could have come up with a common bond that would help two boys form a basic friendship. I regret missing that moment.


In scene two… imagine if the grandma had said to Laura, “I noticed that your son REALLY loves water! His smile makes the splash pad a more enjoyable place to be. What else does he like to do?”

That would have opened a door for a conversation rather than sentences that came across with tension that took away from a mom just wanting a normal day at the splash pad with her kids.

We are a couple who aims to be very transparent about Nolan’s challenges and diversabilities. We advocate for people to ask questions to understand. It helps us know people care. This week, we learned that the framing  and sometimes context of those questions can make a big impact as well.

So, if you are reading scene one and scene two and trying to sort through… “What went wrong? or “What would I do?” Here are my reflective suggestions:

  • Be curious. Noticing someone’s diversability is okay. They likely don’t want to be invisible or viewed as “less”
  • Figure out a way to take what you noticed and frame it into an encouraging observation and transform it into a way to relate / connect (example: “I couldn’t help but notice that your child loves shapes. My child loves the sandbox. Would your child like to draw shapes with mine in the sandbox?”)
  • Remember the old adage, “If you don’t have something nice to say, don’t…”  This rings true with people that have diversabilities. If you see someone in a wheelchair don’t say, “I feel bad that you can’t join us in the game.”