Changing “I can relate…” to “I can’t, but I care”

 

11/24/18
by Tim Paauw

If you know of someone with autism, depression, anxiety, or another non-visible diagnosis, you may have heard them share a comment or story that may highlight one of the daily challenges within their diagnosis. Perhaps in that moment you aren’t quite sure how to respond and offer what the person might perceive as a worthless comment like “I can relate… I had that when_____.” (unless you are diagnosed with that exact same thing and they are aware of it, be cautious to share a momentary story as a connection to someone’s larger daily journey)

Here are a few example scenarios:

  • Your friend with autism says: “I’m sorry I can’t come to the fireworks on the 4th of July with the group of our friends. The crowd and noise can really overwhelm me and I may meltdown or shut-down. I better pass.”You might be tempted to respond with: “Oh, I totally get it. I can relate because I don’t always like loud noises either.” (Not believable, since you are hoping to go to the fireworks – this may make the person feel like their emotion/situation is being minimized or misunderstood)
  • You colleague with depression says, “As much as this topic is important, I can’t attend the meeting today. I am not feeling up to it.”You might be tempted to respond with: “No worries, I can relate. I was tired earlier today too.” (Your comment may be vastly undervaluing the true nature of the issue that the person LIVES with an overwhelming exhaustion and regrets not being able to attend the meeting)

(Relate to the person, Not to the moment)
What if instead, you responded to these types of situations giving the message that empathy is NOT in relating to the moment, but rather that you relate to the person and want to be caring by supporting them in their challenge or THROUGH that moment.

Instead of “I can relate…”, try using “I can’t relate, but I care. I not quite sure what to do or say but want you to know how important you are to me, do you have thoughts on how I can help?” (Perhaps offer a suggestion through question form to show this value. In the example for work above you could offer to your colleague “How about I take good notes and we enjoy a cup of coffee  together tomorrow so I can catch you up to speed, would that be helpful?”

I believe there is a powerful empathy when someone affirms a challenging comment with an admission that “I  don’t think I  fully understand what you feel, but I want to help because you matter to me.” … wherever the conversation leads after that comment, you have likely made that person FEEL valued and they won’t forget it.

What if we saw each person we interact with as beautiful, because he or she is made in God’s image – pausing to weigh our response and the value it will have in affirming them rather than the moment? What if we were to admit sometimes that we don’t always understand, we might never understand, and sometimes can’t even be sure we have a helpful thing to provide but love them and want to show that we care (perhaps adjusting plans at times or being okay with them passing on plans and knowing you support them in doing so). In doing this, what perhaps the message we sent is: “I don’t know how you feel, but I believe you are beautifully created by our loving God and I value you.” Maybe in this genuine vulnerability we see greater awareness, stronger compassion, and truer relationships form. At times, the conversation may end with “Thanks for asking, but I don’t have any great suggestions. I just want to pass on this event.” I believe in that response, one should still know there was value in that interaction and, at times, accepting this request is showing you care.

My Love Note to Laura

by Tim Paauw
7/8/18 aa

I remember vividly holding hands with you, the love of my life, and walking through the sparkler-filled tunnel of our favorite people at the end of our perfect evening. I can still see family and friends holding their sparklers and smiling with us as though that moment happened in slow motion and was meant for eternity. I was about to enter the next chapter of life with you, the big unknown was in front of us and yet we promised to take each step together. That was a promise that was easy to make and has been easy to keep, because we did it with Christ in our hearts and as Lord of our life. We love because He first loved us.

The pastor preached our wedding message earlier that day from 1 Corinthians 13:13, “And now these three remain: faith, hope and love. But the greatest of these is love.”

Our wedding day was filled with surprises, fun, toasts, and songs (even a Paauw Brothers Special and a Tito & Rich Blue Moon duet). We danced our first dance to “Bless the Broken Road” by Selah. I believe that song choice was not just a reflection of our past but nearly prophetic about our life ahead as it is a broken road but God has blessed each step.

Twelve years later, we find ourselves celebrating our anniversary in the spirit of true, eternal love – filled with self-sacrificing Christ-like ‘agape’ love each putting the other’s interest first and finding joy in that. Since our wedding, we have celebrated new life with our 3 kids!

a

I would have never imagined when we said “I do” that it would come with the autism journey for two of our kids. I also believe if someone had been able to give me that heads up years ago, I would not have been able to imagine the amazing blessings that are found within this journey. I get to see your love daily as you put our kids needs above your own. I’ve seen your strength as you have advocated in situations where autism has been challenged in ways that others can’t even fathom. I have grown in my faith by seeing you model a self-sacrificing love in ways that most moms have not been privileged to know as a result of the needs that come with autism. I’ve learned about hope through you as you’ve taught many others and continue to build awareness within our community of how to better understand autism and warmly embrace our boys. I’ve learned endurance through your ability to manage school, therapies, and swimming lesson schedules for all 3 kids so that each one would know that mom cares and is there for them.

What I did already know twelve years ago when I said “I do” is that you are a teacher, but I have now seen you teach our kids things that I didn’t think they’d ever be able to achieve. You’ve taught our daughter how to understand, love, and befriend both of her brothers – she is ‘all in’ for this crazy broken road with us. You’ve taught our boys how to face challenges and know they are able to grow through them. You’ve encouraged them to see beauty in their abilities rather than be bogged down by the glances of the public or the comments and questions people ask in front of them about their autism. You have taught them to be their best even when they are facing their worst moments.

So, God HAS blessed the broken road that led me straight to you AND the road that you and I walk, hand in hand. Although the road may feel quite different than that magical moment filled with sparklers and smiles, I believe as our West Side Christian School friends would say, it is ‘beyond belief’.

I love you to the moon and back and cannot wait to see where this crazy broken road will lead us next. We’ve got this!!

 

 

 

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.”

 

 

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.

 

 

 

Autism Awareness & Our Spring Break

By Tim Paauw
4/3/17

The first full week of April is always our Spring Break in Michigan. What does that look like for someone with autism and their family?

Let me share a few details and a brief introduction because “When you have met one person with autism… you have met one person with autism.” This is our story. It may be quite different from others with autism.

Our son Nolan is six years old and was diagnosed with Autism Spectrum Disorder (ASD) on October 31, 2013. I used to call him “non-verbal autistic” because he could not communicate using words. To this day, we cannot have a conversation with him but he continues to make gains. Based on his speech therapist’s description of progress I now call Nolan “noun-verbal autistic.”

April is known as “Autism Awareness Month” and yesterday is celebrated globally as “Light It Up Blue for Autism Awareness” (wearing blue colors and famous landmarks adding blue floodlights to shine a light on behalf of awareness).

As a dad of a son  on the autism spectrum, this month is quite a blessing. I am grateful for the month of April because 1 in 68 people are somewhere on the Autism Spectrum yet we have no clue what causes this and there is no cure–we need continued advocacy and awareness.

Okay, now back to my original question…

Where we live this week is a statewide Spring Break from school. Many load their vehicles or hop on an airplane and go somewhere warm. In our family, this week is a bit more unique and complex than the rest. We too enjoy every minute of it and wouldn’t trade it for the world, it just happens differently than for most.

Our son Nolan does not do well overnight in locations other than his bedroom. We have traveled in the past and hotel rooms or guest bedrooms in most locations feel too foreign to him (people on the autism spectrum often prefer routine and can get overwhelmed with new settings–a simple alarm clock location or the bed being along the wrong wall can cause anxiety to spike). We have seen Nolan pace around a bedroom literally all night in tears covering his ears to reduce his senses and repeating the phrase, “It’s okay, its okay, its okay.”

Nolan is a kid who is very sensitive with his hearing/ears especially. He can’t stand when someone touches his ears and usually won’t wear a hat in the winter because it agitates him. We took him and his twin sister to California when they were two years old to visit my grandparents. The cabin pressure changes in the airplane were extremely frustrating to him and caused stimulation overload and tantrums while he tried to regulate his thoughts again.

We have made the decision as a family that for now we will “divide and conquer” so that the best scenario is possible for all. Again, we are just one autistic family and each is unique. We are not advocating that everyone with ASD should remain home. In fact, we still make a trip to a cabin once each year not far from our home where we have found for some reason it is the only place Nolan will accept as “home away from home.” This becomes our family vacation for one week each year.

For now, it is best to help Nolan enjoy Spring Break by providing him the safety and comfort of his own bedroom at night and some familiarity of our town for the week, a “staycation” for him while we take him to do things that he loves (jump on the trampoline in our backyard, visit the botanical gardens in our hometown, walk a trail in the woods, visit a local playground, etc). We have a younger son who is now 2 and 1/2 years old who remains at home for the Spring Break until he is a bit older and can appreciate traveling.

Last year, my wife Laura enjoyed the time home with both boys while I took our daughter to California to spend time with my grandma, aunts and uncles, and to show her the beauty of the redwoods, San Francisco, and many other great California places.

This year for the Spring Break week, I am at home with my boys and thoroughly enjoying the quality time! Laura and our daughter headed to California to see our grandma and other relatives and to explore a bit more.

The natural reaction for some when they hear this, “Oh, that is sad that you can’t all be together.” Truth be told, we even feel this way once in a while until the actual experiences take place.  Now that the week has arrived and we are in the moment it is so much easier to see the “why” behind our decision. We get to live it out and celebrate it!

Nolan will have a week he won’t forget where he gets to do all of the things he loves. Evan, our younger son, gets to have his first “sleepover” outside of his crib with Nolan this week and adores his big brother. For me, I get uninterrupted time with 2 boys that own my heart. I don’t get enough of that so this is a gift. Our daughter, Kathryn, gets to see some unique places and have a week where mom focuses only on her for a bit and Laura gets to bond with Kathryn and also see family that we love and don’t get to visit enough.

If you’re reading this blog-post my guess is that you either hoped to build on your own awareness and  understanding of ASD or you have a loved one (perhaps yourself) who has been diagnosed on the spectrum and you are like me, reading various articles to empathize and appreciate others within what I’d call “our autism family”. In either case, I hope it met your heart and provided what you hoped for.

It gives me chills to think of all the people and places taking part in the “Light It Up Blue for Autism Awareness”:

To all of these places, people, and each of you reading this… thank you for your support and your help in providing resources and encouragement for families like ours on a unique “Different, not Less & very Blessed”  autism journey!

 

Focus. Involve Family & Friends.

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“Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith.” -Hebrews 12:1-2

Maybe you have received a diagnosis or have a closed loved one that has at some point. It may be for a physical issue, an emotional struggle, or something else.  If so, you can relate to my first entry  for BeautifullyPuzzled.com where I shared the heart feeling that comes with a diagnosis of any sort–that feeling where your heart stops, the world freezes, and all sense of ‘normal’ goes out the window.

We empathize with others because diagnoses  steal the feeling of “life as normal” and lead to “life unknown”. Embrace it. In that moment you are exactly where God wants you–dependent on Him.

When Nolan was diagnosed, we got home from that appointment and felt lost. “Now what?” We wanted to solve it and felt powerless. The truth is, that was a healthy thing. It taught us, required us, to open our eyes and realize the volume of people in our life that wanted to help. We became fragile, vulnerable, most importantly dependent.

We began to realize  that the only way we could provide what is best for Nolan’s needs was to simply be humble and ask (fighting that human nature of pride). As the Bible mentions in the opening verses of Hebrews 12, we needed to throw off everything (pride, self-pity, sorrow) that was hindering us, that distracted us from the beautiful fact that Nolan is a child of God. Christ is in Him. He is an image bearer of God. With that understanding, there is worth in persevering through the challenges as they shape us. We could learn to fix our eyes on the journey ahead and find energy and support from family and friends. The cloud of witnesses in our life, those that we have opened up to and trusted with Nolan, have made the challenges seem achievable.

Our advice to anyone overwhelmed with a diagnosis (no matter what type)… don’t believe that “confidentiality” and “privacy” is your best avenue. You need to recognize the cloud of witnesses surrounding you. If you don’t have close family and friends who may help, call a church close by and request a meeting with the pastor for the purpose of enlisting help.

If you are a family member or friend of someone asking you for prayers or help, don’t ever reply with “I am not really an expert in ____”. None of us are. Instead, accept the request and join the journey and team. Research the diagnosis and find out more. Ask questions.  In doing so you send the message, “I’m trying to also understand. Please let me be a part of your journey.”

Laura and I decided early on that we would study up on autism, learn the facts and read the research  so that we would better understand how to parent him but also educate and build awareness for others.


A few steps our family has taken in the past few years in Our Autism Journey:

We have been blessed by the encouragement and resources offered through the CLC Network in Grand Rapids for schools and churches (CLC Network Blog)

We now visit Autism Speaks regularly. We have purchased their t-shirts as a step of supporting awareness and to engage others in conversations.

We have found an amazing ABA Therapy group who has provided coaching in our home and meets works with Nolan 1-on-1 weekly (Behavioral Analysts of West Michigan).

We googled “laws regarding autism in Michigan” and learned of the Autism Reform Law in Michigan that allows our health insurance coverage to support many therapies (Michigan’s Autism Links).

We asked for help at church and now have an entire team of supporters who make each Sunday possible for our family (Redeemer Presbyterian Church of Ada)

We are blessed by a school in our neighborhood that believes in including students of all abilities so that the entire body of Christ can grow together spiritually, socially, and academically (West Side Christian School).

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The “D” Words In Life

by Tim Paauw 11/7/16

Diagnosis. Disability. Disease. Difference. Difficulty.

Doesn’t it feel like “D” words should be “taboo”. I used to think this until I’ve been blessed with my son Nolan, who  I remind daily is my best friend. One of my favorite Christian songs on the radio right now is “Blessings” by Laura Story. Blessings–By Laura Story

I am reminded that one attribute of God’s creation is a “D” word… “Diverse”. In that diversity, if we look we can find beauty. I believe even in the other “D” words when we look carefully and allow our hearts to be molded by God’s promises we are able to find beauty in the raindrops.

We heard our non-verbal son Nolan say “I Love You” for the first time on October 30… the next day we visited Helen DeVos Children’s Hospital for a 3 hour diagnostic visit and heard, “Your son has autism. There is no known cause and no known cure.”  One year later, on October 31, I placed my thoughts on paper. Here is a glimpse from that:

 One question races through my mind regularly from this diagnosis, “If I could change Nolan’s journey on the ASD spectrum would I?” For those wondering, the answer is “yes and no”. Yes, I would want language to be fluent for Nolan. Yes, I would want Nolan’s peers to desire playtime with Nolan instead of leaving him on the side because he doesn’t react. Yes, I would change some of his mannerisms and behaviors. Yes, I would change the ‘how he learns’ because teaching others how to connect with him and understand him is a 24-hours per day/7-days per week task when we are still in the midst of the learning process ourselves. No, I wouldn’t want to trade or change my son for anything in the world. No, I don’t mind advocating for him in any arena or circumstance—he would do it for me in a heartbeat. No, I wouldn’t change him because I enjoy learning new things about my son every day. No, I wouldn’t change him because his joy surpasses my deepest understanding and in that I find a ton of my own joy. No, I wouldn’t change him because he sees people for who they are better than most people can—what a gift. No, I wouldn’t change him because his story is something special—one that will inspire others to better understand autism and open doors. No, I wouldn’t change him because I can’t imagine loving him or my other kids any more or differently.

So as we go through this fall season, my wife Laura and I will choose to smile when we carve pumpkins and know that Nolan would prefer to watch from the side instead of touch the messy pumpkin texture. We will rejoice as he celebrates the great and cold outdoors (likely without a coat) while many of us huddle inside stressing about the cold temperatures. We will laugh as he jumps on his bed when his twin sister is sleeping in hers–we know it brings joy to him and helps him regulate his thinking. We will continue to be humbled every time his twin sister, Kathryn, introduces him to others and proudly plays with him anywhere we go.  We will let our hearts soar as we see the body of Christ come to life through our family, our church family, our school family, and our friends as they surround Nolan with support and understanding. We will take our next steps in this journey of parenting knowing that we have been given such a gift in Nolan and his twin sister Kathryn! What a crazy, puzzling, and beautiful journey—praise the Lord in the spirit of Proverbs 16:9! To Him be the glory for far surpassing our desires.

One way we have seen Nolan’s story used as part of God’s story can be seen on CLC Network’s newest Blog Post: Making Room For Nolan

So, I’ll end this longer reflection by saying no matter where you are at personally today or if you have a student, friend, or family member facing one of the “D” words in life… pray for beauty to be found in the rain. God can use any circumstance for His glory. A level of healing happens when we find contentment and joy in a moment and realize there is an eternal home in Christ far greater than the struggles of today–the “D” word for that is “Divine”.

Diagnosed.

Three years ago on this day, October 31, 2013, our lives changed. This was the day where our precious son Nolan received a diagnosis of being on the Autism Spectrum as a result of a 3 hour diagnostic visit at Helen DeVos Children’s Hospital (an appointment we nervously awaited for 6 months on a wait-list). Most people reading this will have a first reaction of heartache, possibly the thought of “I’m sorry.”

I’ll go on the record as saying we are not heartbroken and you don’t need to be sorry. Don’t feel bad if that was your initial response. I will also say that my heart hurt initially at the appointment and we sat stunned when we heard, “Your son has autism. There is no known cause and there is no known cure.” No amount of preparing could have calmed us down going into or coming out of this appointment. Questions swirled… “Will he ever talk?” “Will he ever have a friend?” “What do we do for school ahead?” “Will he live with us for the rest of our lives?”

However, as we climbed in the car to ride home from the appointment we looked in the backseat at our smiling Nolan and everything immediately felt right with the world. We knew that although life’s plans will take a turn, our God gave us such a great gift and beautiful blessing worth the “beautifully puzzling” journey we were entering.

One comment over the past few years that I won’t forget… I introduced Nolan to our pastor a while back and explained that Nolan is non-verbal and has autism. His instant reply was, “Isn’t it great that God is going to use your son to impact others in ways you can’t even imagine yet?”

I began to pray for that, daily. “Lord, help Laura and I to learn how to be the parents worthy of this beautiful boy you have given us. Provide ways for Nolan’s story to be used as a clear part of YOUR story Lord, so that others may know Christ through him. Give us patience when we struggle. Give us eyes to see each gain as monumental. Give us words to be his voice for others and give him curiosity to find his own voice along the way.”

Within the past few months of his journey he has started kindergarten alongside of his twin sister, Kathryn, at West Side Christian School (something we weren’t sure was possible even a year ago). There are aides that support him each step and challenge him to find his voice. Just this week we received a video of him counting to 10 more clearly than we’ve ever seen. He has been able to be a part of a video created by the CLC Network and Calvin College to educate & encourage churches to include everyone. This video has now been seen over 32,000 times! https://www.youtube.com/watch?v=G0iumi_CxL  God continues to use Nolan in ways we didn’t and couldn’t anticipate.

We are grateful for many who have embraced Nolan’s journey alongside of us. For those just entering the first steps of a journey with a diagnosis I would encourage you to breathe deep and allow others to partner with you. Our family cannot thank Miss Luanne (former preschool teacher who took care of him for 3 years), Dr. Penning (speech therapist), Behavioral Therapists of West Michigan (ABA Therapist team), Team Nolan from Redeemer Presbyterian Church, our babysitting team, and the team at West Side Christian School. You deserve credit for the reason he can sing in chapel, count to 10, sit through a story-time, engage in playtime with friends, and much more.

Each day is unique in our life with Nolan. We wake up not sure totally what to expect. Literally, some days we walk into his room and he is sleeping on the floor without a blanket and his lights on and toys placed in straight lines everywhere. This is all part of our learning, part of the journey. We have found to embrace Nolan’s diversability and learn from the joy he has despite the challenges he faces. What a gift!

Here is a journal I wrote at night on October 31, 2013…

Continue reading “Diagnosed.”