Note: April is National Autism Awareness Month. In Emily Colson’s new book Dancing with Max, she chronicles the highs and the lows, the heartbreak and the joy, the magic and the mystery of sharing life with her autistic son Max, who was once called “unteachable” by purported “professionals.” I recently had the opportunity to talk to Emily about the journey that she and Max walk together, and how she learned to “throw out my ideas of what I thought life would be -- should be, and let joy fill up those brand new vacancies.”
As the daughter of Chuck Colson, Emily has seen first-hand the redemptive power of God’s love and how He often uses the darkest moments of our lives to showcase His glory and bless us beyond our imagination. But nothing in her life had prepared Emily for the greatest gift she has ever known, disguised as her greatest challenge—her son, Max.
Every parent understands that parenting is the hardest, yet most rewarding job any of us will ever have. But the parent of an autistic child faces a particularly unique and difficult trial—trying to communicate with someone whose awareness of the world doesn’t match their own. “What Max wants is for the world to make sense, to feel safe, and it doesn’t,” Emily says.
While autism manifests itself differently in every person, many share some common symptoms—difficulty with social interactions, communication skills, and obsessive or repetitive behaviors. It makes teaching even the basics of life, a hard-fought daily battle. Couple that with another common issue—sleep disorder, and you have a parent trying to fight those battles with insufficient rest, decreasing patience and faltering strength. “Max is not a burden; he’s my greatest gift,” Emily remembers thinking about those difficult early years. “I’m not about to give up. I’m just not sure I can keep going.”
So how did Emily find the strength to keep going through all the challenges? There were so many sleepless nights, tantrums, endless bureaucratic battles to secure the help and educational support that Max needed, and untold insensitive situations and people who just didn’t understand that Max was desperately trying to make sense of a world that confused, frightened and baffled him, in the only way he knew how—to cry, scream, and fight his way through it.
“I think it (strength), can only come from God. I get up every morning and say, ‘this is my last day alive, what am I going to do with it? Then I look for what God wants to do with it and what He wants to teach me and teach us. That helps me to stay focused. It gets me through and keeps me from catching the first plane bound for Tahiti! For me, it’s also trusting that God has a bigger plan than I can see. And I am so in love with Max -- that carries a lot of weight.”
Emily also pointed out how counter-productive it is to make comparisons between the life we have, and the life we thought we were going to lead, or the lives we see others leading. “Comparing lives is a laundry chute to self-pity. This may not be the life that I envisioned for myself, but it IS the life that God gave me. And I think that one reason God wants us to give thanks is so that we will focus instead on the things that we DO have so that we can see our gifts as part of the Body of Christ. It puts our eyes on Him, not on all our challenges. And when we are in that place, the view is always good. Gratitude is the great equalizer.”
In addition, Emily realizes that she is Max’s “stability -- his only barometer for reading the climate of the world around him” which, we discussed, is similar to the path we walk as Christians. If we fall apart when the world around us is crumbling and makes no sense, then what message are we sending to others about how stable and trustworthy we think God is? Just as we need to demonstrate our faith and trust in a positive outcome because of our relationship with God, so too does the parent of any child, but particularly the parent of a special-needs child. They rely on the adults in their world to be steadfast and strong in the face of adversity. Otherwise, what does that mean for them?
But Emily wants to assure us that, “we are vulnerable and we are not going to be perfect.” However, she learned early on that Max was, “so receptive to my moods. If I were just quiet for a moment, he would fall apart. If he thought that I wasn’t perfectly happy and that everything wasn’t great, then he went into a tantrum. So I learned to be so ‘on’ and not to let my frustration show, or Max and I would both pay for it. There was a lot of pressure to keep my composure.”
She also underscores how God uses the adversities in our lives to teach us lessons that we could never learn otherwise. When an “educator” told Emily that then 7-year-old Max was “extremely disabled” and“severely autistic” implying that Max was incapable of learning, Emily bristled, “Max is going to be a bridge designer someday — You just watch!”
From the time that Max was about two years old he was mesmerized by bridges, obsessively pouring over books with photographs of them and seeing them in everything around him. As soon as he could get his fingers to work, he created elaborate replicas from Legos or anything else he could find to use as a building material, even a spoon across two blocks. One of his first words was “bridge.”
And as amazing and intricate as his designs are, Emily shares the truly wondrous thing about Max.
“He has connected so many people to the things that are really important in life — the things of God. By his mere presence, he has taught people about sacrificial love, compassion, and joy. He just exudes joy! He has such a pure, honest faith and he touches so many peoples’ lives.
He has become a bridge himself. He’s a greeter at our church now and the other day as he watched people getting out of their cars and heading toward the door, he started jumping up and down and yelling, ‘They’re coming to church, they’re coming to church!’ The pastor’s wife leaned over to me and said, ‘Emily, I wonder if that’s how God feels?’ He has such joy in all the things that we take for granted and forget how precious they are. Lately he’s been dancing at the back of the church--no inhibitions at all. And sometimes he simply announces in a loud voice, ‘I’m HERE!”
The autistic boy some experts thought was a lost cause, has been used by God as the ultimate bridge between our misunderstanding and our blind faith. As Emily’s Pastor Paul says, “The Holy Spirit speaks Max’s language.” And if we are to “love our neighbors," even those who are different from ourselves, Emily encourages us to, “look for Jesus in their eyes. God is there. When we look for Jesus, we can see Him.
"I hope people will step out of their comfort zones and into the life of somebody who doesn’t ‘fit’—somebody that is a little messy. Because something happens to US when we do that. When we step out of ourselves, stop looking at our own needs and put our eyes on someone else, we are blessed; we are changed; we are transformed.
"We have the opportunity to be the answer to someone’s prayer. Right now there are people praying that someone will notice them, that someone will recognize they have needs. They are feeling isolated and alone. And no matter what our lives look like, we have the chance to touch someone else. Some of the things that people have done for us only took 5 minutes of their time, but I am so grateful and will never forget them.
"God tells us that we are aliens and strangers and not to conform to the things of this world. Then our paths cross with individuals who don't conform to the things of this world and we spend our energy trying to make them ‘fit’ better! But God is telling us, ‘I don’t want you to fit — you don’t have to fit in order to belong. And truthfully, none of us fit. If we think we are starting to fit too well, we need to take an assessment of our lives because being 'comfortable' in church on Sundays and then going on about our lives isn’t necessarily what God wants for us. I think He wants us to be a little uncomfortable and needing to trust in Him -- to step outside our comfort zones and discover the adventure He has planned for each and every one of us.”
The more time one spends in the company of those with special needs who share our world, the more one catches glimpses of God himself. They have no pretenses and are not caught up in the concerns of this world. As Emily explains, “They never put on an attitude, don’t try to act ‘cool’ or important. They don’t care where you live or what you do for work. And it’s lovely to be with someone who just likes you for you.” Sort of reminds one of how God views us. And as Max himself so eloquently puts it, “You could learn from me.”
Thanks Max, I already have…
You can read more about Emily, Max and her book Dancing With Max, on Emily’s website: EmilyColson.com. For support and more information about autism, Emily says there are many resources out there and shared just a few of them with me: nationalautismassociation.org/, Joniandfriends.org, thearc.org, chosenfamiliies.org, and theheartofthecaregiver.com/are good places to start.
Deborah J. Thompson is a writer, speaker, artist and Stephen Minister. Her articles are published by Crosswalk.com and "The Fish" family of Christian radio station websites around the country. She shares "Reflections" on Life, Relationships and Family on her website, www.inspiredreflections.info. And she is working on her first book, Your Life, Your Choice--5 steps to Peace. Join her on Twitter/InspireReflectand Facebook/DailyInspiredReflections.