The Impacts of “Noticing”

By Tim & Laura Paauw
June 14, 2017

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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.”

 

 

Diversability, Rethinking Environments

Memorial Day Celebrations – By Tim Paauw
5/29/17parade2

Today is a special day where we remember many men and women who have served and sacrificed for the good of our country.  One of my favorite events for the day is a Memorial Day Parade that our school participates in each year. As a school principal, it is an honor be able to thank those who have served while seeing joy on so many faces as we go down the streets of our town. I have had this distinct privilege for seven years now. You can easily picture this beautiful event… candy being thrown everywhere, kids lining the streets waving and shouting, Red/White/Blue flags and outfits in abundance, the breeze whistling through the trees at perfect times to cool you off as you walk, all of our uniformed forces are present to add to the reminder of patriotic sacrifice including the police officers, firefighters, and every veteran military branch, and lastly the amazing airplanes flying over with eye-catching loops and cloud trails that form wonderful shapes in front of blue skies.  I LOVE THIS ENVIRONMENT AND IT GIVES ME CHILLS TO THINK OF OUR FREEDOM AS I TAKE EVERY STEP IN THE PARADE!!!  I want my children to grow up understanding this same blessing and celebrating it.

Now, re-imagine this environment from a diverse perspective. Imagine if your brain couldn’t accurately filter and process each detail separately and instead it felt as though all of it was happening AT you rather than WITH you. Suddenly, the waving hands look as though they are swinging, airplane smoke appears to be a danger on the horizon, the breeze startles you, the shouting feels like a signal to worry because of everything else happening, you look around and notice that uniforms you normally see rushing to emergencies are hanging around EVERYWHERE!

All of your senses are telling your brain it is time to panic. Nothing feels right. You feel stressed. You cover your ears to try to reduce noise and allow yourself a quieter moment to think, but the breeze is relentless and the sirens keep going off!

One early indicator for us that our son Nolan was on the autism spectrum comes from this parade environment. Many of you have heard of and aware of “sensory issues” that can come from busy settings for people that are on the autism spectrum. About six years ago, our school was placed directly in front of the fire-trucks for the parade. Nolan was almost one year old and we had him and his twin sister in a stroller ready to walk the parade. From the very first firetruck siren sounding and horn honking we knew we were in for the longest mile of our life. Tears flowed for Nolan. He covered his ears. We ended up carrying him as he screamed and couldn’t find peace in the midst of what he perceived to be chaos  (Click here for a sensory simulation).

If I paused my writing and asked for advice, I have a feeling many would say “Quit the parade! Don’t take Nolan next year, he hates it.” If this is where your heart is right now in reading this, I can guarantee you that you are not alone and it is one of the first things we thought about doing. In fact we did. For the next two years we made excuses on why we shouldn’t participate. We took a break.

When our twins were almost four years old, we decided not to give up and try it again. Just like many parents, we want our children to learn the lesson that when they face challenges and trials it is important to press on through them. Nolan has not missed a parade since then. The original experience sparked something for us as parents, it triggered the healthy recognition that our son has diversabilities. He is autistic and sees this beautiful world a bit differently than others, than us sometimes. He is able to take in more sights and sounds than most.

We took a closer look at the parade environment  more carefully (and other similar experiences). In order for us to support our son and help him experience these moments we realized it is best for him (and us) to preview and take time sifting through options on how to reduce some of the sensory challenges. For the parade when he was four years old we included our parents to assist in walking the parade with us, and we had backup plans in place in case things were too tense for Nolan.

Improvement has happened each year. For the past two years we have entered the school truck as part of the school’s group. This has allowed Nolan to be “daddy’s co-pilot” and given us a radio to play calming music inside while he looks and waves when he wants to do so. Windows can go up if things get too noisy, although I’m happy to report that at this year’s parade he was smiling the whole way and didn’t need this to happen. About half way through the parade he did request my phone so that he could watch his ever familiar TV Show “Super Why” to help narrow his surroundings for a while.

From the truck as I waved, I did hear a few voices from the crowd talking about Nolan as we drove by, “Check out that boy, he is on a cell phone missing the parade!”  If only they knew… this was a victory for Nolan! He was IN the parade. I am so proud of my boy and thankful for this co-pilot in life. I think we get it wrong when we always assume someone with an autism spectrum disorder needs to behaviorally change, at times the rest of us just need to pause and figure out how to change the environment a bit more.

parade

Some of you reading this may be on the autism spectrum or have a loved one who is. It is my hope to encourage you that those events you love and environments that can be overload can be overcome. Hang in there and get creative!!

Having said that, we’ll see if I ever have the courage to take Nolan to the 4th of July fireworks… again, re-imagine that setting from a sensory viewpoint. Cannons, fire, dark, booms, lots of people. Some day, maybe.

 

 

Church, Don’t allow disabilities & recoveries to create isolation…

This response must be the mindset of the church towards all its members, regardless of age, ability, or other circumstances: “We need you. No matter how you worship or how you serve, we want you in this church.”

Guest Writer: Maria Kraayeveld
4/9/17Maria

Maria is currently a Graduate Student at Calvin College extending on her degree in Speech Pathology. She serves on our son Nolan’s team at our church and has a heart for helping people of all abilities feel welcomed and included within the church.

Recently, she wrote an essay for her coursework on how churches can grow in opportunity to respond and include people who are stroke survivors. The theme of her paper cross-applies to all challenges people face and how the church can respond. It hits at the heart of the Bible passage found in 1 Corinthians 12 (The Body of Christ). I have asked permission to re-post her essay on BeautifullyPuzzled.com:

Inclusion of Stroke Survivors in the Church
By Maria C. Kraayeveld, Calvin College

Due to communication’s vital role in forming relationships, people with communication disorders often lack a sense of belonging.  Stroke survivors with aphasia often struggle with both the service and other aspects of church life because of the centrality of communication in churches.  Faith communities often respond well to the emotional and
physical needs of these individuals immediately following a stroke.  However, when stroke survivors return home and have to readjust to new life, support dwindles.  To act as the body of Christ, churches must be a community of love: demonstrating patience, respect, understanding, hope, and support for all of its members.respect

Churches have a vital but difficult task in incorporating all of its members.  They are home to the broken; if they only accepted perfect people, nobody would belong at church.  As the body of imperfect believers, churches must incorporate the abilities and gifts of all members.  Otherwise, the entire body is weakened.  Of all types of groups of people, church members should be the most inclined to create a sense of belonging.  As 1 Corinthians 12: 25 states, God desires churches to function in this manner so “that there should be no division in the body, but that its parts should have equal concern for each other.”

As a whole, churches excel in addressing the needs of stroke victims during the “crisis period.”  When individuals arrive at the hospital and even as they begin rehabilitation, church members often jump to action – starting prayer chains, sending cards, visiting the hospital, bringing meals, and helping out in any way necessary.  Many churches have systems in place for these situations, such as Redeemer Orthodox Presbyterian Church, where I am a member.  During times of illness or crisis, an email relaying the news and requesting prayers is sent out to all members and the Congregational Support Committee organizes meals.

Even though most churches respond well during the crisis period, support often slows or stops altogether once people return home and begin “real life.”  Because of the sudden nature of a stroke and its effects (e.g. aphasia), those returning home have an entirely new life to which they must adjust and an identity with which they must come to terms.  Renegotiating their sense of self requires a lot of time and effort for the stroke survivors, which is made more difficult without the support of others.  Some stroke survivors don’t remember much of their time in the hospital, so although they received visitors, they return home and feel as if their churches have ignored them (Goetz, 2011, p. 106).  Two major concerns tend to arise as stroke survivors adjust to their new lives: feelings of isolation and struggling to find a sense of purpose.
Due to ignorance concerning aphasia and the stroke survivors’ specific communication need
s, fellow church members often ignore them.  If they do engage in conversation, it is in an impatient or condescending manner
(Goetz, 2011, p. 108).  Due to the increased time and attention required for conversations with those with aphasia, many stroke survivors’ friend circles dwindle.  In an ethnographic study friendsfollowing 20
stroke survivors, all participants reported narrowed social circles (Parr, 2007).

Stro
ke survivors returning home also usually question their sense of purpose.  During the stroke survivors’ absences, churches must replace whatever positions the individuals held to keep the church and its ministries running smoothly.  Although necessary, this replacement only increases the stroke survivor’s feelings of uselessness.  Often, churches do not invite the individuals to serve in other capacities regardless of spared abilities.

The reason for the decreased support is not unkindness but often a lack of knowledge.  Many people are uncomfortable interacting with those with disabilities because they don’t know what to expect or how to react.  Acquaintances and even friends can “feel awkward and even frightened” (Parr, 2007, p. 111).  Though understandable, these feelings are of course invalid reasons to ignore anyone.  If church attendees are notified of the stroke survivors’ spared abilities and areas of difficulty, they can be more patient and understanding of slow or confusing speech.

Once aware of areas of need, attendees are often quick and willing to rise to the occasion.  For example, a family at Redeemer has a boy with autism who struggles to sit in the sanctuary during the worship service.  For quite some time, they came to church but would almost always leave the sanctuary, so they felt little benefit from their attendance.  They then approached the pastors, who knew nothing about their son but were willing to learn about him and how the church could help.  A team was quickly put in place to stay with this boy during the service and the number of volunteers continues to grow.  Once church leadership is notified of a situation, they will often attempt to find a solution.  At Redeemer and other churches, the majority would like to help, but we might not initially be aware of the need or know how to help.

In order for churches to improve, stroke survivors and their caregivers must initiate contact with church leadership or a committee created to help in such situations.  This group can then relay information to church members via verbal or bulletin announcements or pamphlets put in mailboxes or at the front of church.  With this method, church members are informed of difficulties that the stroke survivors have as well as how they can best communicate with them.

However, notifying the leadership of communicative needs and requesting help requires stroke survivors to accept their present level of language.  The mindset of “getting back to the real me” as soon as possible is part of the medical model.  Particularly due to the acquired nature of a stroke, many stroke survivors adhere to their former standard of language and consider their improvement a failure until they reach that previous level.  This mentality diminishes stroke survivors by focusing on the return to their pre-stroke selves instead of the potential and abilities of their “new normal.”  If stroke survivors do not express their current level of strengths and needs, churches will be less equipped to help.  Consequently, stroke survivors sometimes isolate themselves further by stressing the recovery of all past abilities but never notifying the church of needs or asking for accommodations.

Just as stroke survivors must self-advocate, the church must actively look for ways to overcome assumptions and alter expectations.  It is more important to focus on what the stroke survivors are currently capable of and how we can build on those strengths than focusing on whether they will return to their premorbid state.  This requires churches to meet them where they are at and include their present abilities and strengths.

During the church service, we can incorporate nonverbal and multi-modal forms of communication.  For example, Redeemer has times when the congregation listens to someone sing or play an instrument as well as times for silent prayer.  These moments allow the stroke survivor to be a part of the service without requiring much auditory comprehension, cognitive processing, or any verbal expression.  The church can also incorporate multiple modalities (verbal, auditory, visual) throughout the service.  For example, announcements made at Redeemer are written in the bulletin as well.  Sermons often begin with a story or example, which are easier for stroke survivors to comprehend (Goetz & Bloem, 2015, p. 61).  Although an outline is usually provided during the sermon, stroke survivors would benefit from a written outline or notes provided beforehand.  These small changes can be made quite easily and still have an immense impact.

We must also – and maybe even more so – incorporate these individuals outside of the worship service.  As mentioned, the greatest concerns for stroke survivors are isolation and finding a sense or purpose, both of which are addressed outside of the worship service.  The church must be intentional in producing feelings of belonging, which require more than briefly acknowledging or greeting the individual.  The church must partake in deep conversations and discover ways for the stroke survivor to serve within the church.

To create an atmosphere of empowerment and belonging, the church must reconsider how it approaches all of its members.  A music minister at a Grand Rapids church said, “We need you.  No matter how you sing, we want you in choir” (Goetz, 2011, p. 112).  This response must be the mindset of the church towards all its members, regardless of age, ability, or other circumstances: “We need you.  No matter how you worship or how you serve, we want you in this church.” 

Due to the vastly differing linguistic, physical, cognitive, and emotional factors among stroke survivors, there is no one-size-fits-all area of service for stroke survivors.  Just as all able-bodied members of the church bring different gifts and needs, so do stroke survivors.  The individual and church must together determine which strengths the individual has and how and where they can and want to serve.

Recognizing and appreciating stroke survivors’ full range of gifts coffee.jpgallows them to discover meaningful and fulfilling tasks.  On the other hand, we cannot dismiss the joy found in “small” tasks.  A stroke survivor who was responsible for making coffee noted that “being able to serve and be productive and make a contribution i
s something that I really, really, really had missed (Goetz & Bloem, 2015, p. 253).

Many of the areas that would help these individuals would simultaneously benefit all members and attendees of a church.  Providing multiple modes of communication help the elderly, young children, and anyone that struggles with attention or processing.  Partaking in deeper conversations as opposed to brief greetings form better relationships for both parties.

The church must address feelings of isolation and uselessness in stroke survivors.  Although impairments caused by a stroke negatively impact many aspects of the lives of stroke survivors, they become increasingly disadvantaged once others exclude them because of that impairment.  Thus the amount of restriction caused by their lack of communication is somewhat dependent on the subsequent reactions of those around them, including the members of the church.  As Christians, it is our duty to consider how we can best function as the body of Christ and create belonging for all members, including stroke survivors.