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!

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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!!

 

 

 

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.

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.