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.

“With the LORD”

By Tim Paauw
February 15, 2017

“When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.” Isaiah 43:2

fire

These are the words from my grandfather, Don Paauw’s, favorite Bible verse. I know because I was blessed when my grandmother asked me to read them aloud at his funeral in on February 15, 2013.

They have been words that are etched on my heart and serve as a great visual when life brings trials, we all have been there and some still are walking faithfully through the waters. In these moments God allows us to be beautifully puzzled. Our heads spin. It is a beautiful thing because it humbles us and rightly reminds us that we depend on Him.

Whether it is a critical car accident, a cancer diagnosis, a deep depression, or another situation that brings you to the deep end before you are ready to swim it is in this moment we must pause and remember the calming promise that God is WITH us. This promise is even found in the meaning of His name, Immanuel.

One year ago, I sent an email update asking for prayers on behalf of my mom as she sat in her hospital room battling for her life. One of the prayer requests that day was that her bones would heal as she had just come out of a major surgery reconstructing an ankle, wrist, and arm bones.

Tonight, we are SO grateful that she has been home for the past few months and that the feeling of urgency and worry over her vital organs  doesn’t currently loom so strongly. However, I am writing to ask for a similar prayer request to the one of last year regarding her bones.

One of the largest concerns in these past months involves her right ankle bone and the infection surrounding it. She has faced the strong reality that this may cause a need for her right leg to be amputated just below the knee–quite a dreaded thought.

On Friday, she will be heading in for a surgery that will have her ankle opened up, scraped clean of the infection in the bone and tissue, and thoroughly washed out. The surgeon will place a “spacer” in her ankle that will provide a direct source of an antibiotic and serve in place of the missing talus bone. This is required in an attempt to save her right leg.

If successful, she would likely be able to go in again in a few weeks to have an external brace installed from the top of her calf to her heel which would bypass the ankle and allow her to begin to bear weight again for the first time in months!

Please join us in praying for God to direct the surgeon’s hands, for our mom’s anxiety to decrease, for the infection to disappear and healing to happen, and most importantly that God’s mercy and grace may shine brightly throughout this process.
No matter what happens as the next “step” in her healing, our family can already say God is with us, He is greater than any fear or struggle that we face, and His plan is far greater than any we could imagine (Proverbs 16:9).
I believe my grandfather’s verse (Isaiah 43:2) is the ultimate testimony of God’s mercy. God doesn’t allow us to pass through the waters or walk through the fires of life alone.
The plaque found at my grandpa’s graveside serves as a regular reminder for those who mourn that true healing, hope, and perfect life is yet to come to those who believe and hope in Christ. Next to Don Paauw’s name etched in stone is “With the LORD”. As we pray for my mom and many others we love, let’s most importantly praise the Lord for His Amazing Grace that knows no limit and know that in Christ the answer is already YES and AMEN!
Fear Not. God is WITH Us (Romans 8:31)
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Trauma ~ Our Painful & Puzzling Moments of 2016

By Tim Paauw
1/8/17

storm-and-vessel

“Where there is life, there is hope.” -Dr. Randy Baker

 

 

These were words that Dr. Baker shared with our family as we were in a hospital conference room together one afternoon  making life’s toughest decision… are we at a point in mom’s life journey  where we should allow end-of-life protocols to happen.  We prayed together, took our trusted friend’s advice as a family and decided to maintain course of healing unless vital signs declined to a point where no options would exist for life to sustain. Continue reading “Trauma ~ Our Painful & Puzzling Moments of 2016”