Recently I published the first in what I plan to be a series of books providing suport to special needs parents. Today I am sharing an excerpt from the final chapter.
For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope. Jeremiah 29:11
In my own parenting experience I live the tension between encouraging my son Craig to reach out for new developmental milestones and to accept the reality of life with autism. It is a fine line. Embracing a new hope for him, dreaming different dreams, comes out of acceptance of the reality of autism. What are his limits? Even as I encourage him toward new skills, are they beyond his capacity? Do I push for too much? Academically, my son has achieved levels far beyond what diagnostic testing indicated as his capacity. He has gained levels of independence we never thought possible. One of his Craig’s greatest gifts to me was a simple statement he made after he graduated high school. “Thanks for pushing me to try so hard. I did things I never thought I could do. You believed in me when I did not believe in myself.”
Temple Grandin, a popular speaker with autism, recently said at a conference that the best things parents can do for their kids with autism is push their abilities and keep striving for that next milestone. How much is enough? Where is the line between acceptance and hope versus denial of real limitations?
A parent recently told me that she struggled with acceptance because it feels like giving up. I can understand that. It can be hard to say, “It is what it is and cannot be changed,” because that involves letting go of parts of an anticipated future that feel very real. Hope in tension with acceptance embraces the new and different reality of special needs and seeks the new possibilities within it. The words of the serenity prayer are very wise:
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
It is okay to accept a diagnosis of autism and okay to hope for, and actively work toward, relief from a particular behavior or acquiring a new skill. One cannot be changed, the other can. The line between acceptance and hope versus living in denial comes with the wisdom of understanding the difference between what can be changed and what cannot. Craig has dysgraphia. Pushing my son to acquire handwriting skills that are beyond the abilities of his brain would be cruel. Encouraging him to learn his assistive technology and find creative ways to communicate empowers him to succeed within his capabilities.
That is an example of hope and acceptance in the midst of my everyday life with two steps forward and one step back. That’s a dance we special needs parents know very well. That place of hope and acceptance exists even in the hardest of parenting experiences. Recently I traveled to experience Rev. Leslie Neugent’s boundary-breaking special needs worship service “Parables” at Wayzata Community Church in Wayzata, Minnesota. It is a worship service with, and led by, families with special needs. Leslie offered a poignant message of hope in the midst of acceptance.
Her son J.J. is extremely impacted by Down syndrome and has fragile health. One of the many times her son’s life balanced on the edge of this world and the next, she asked her doctor, “Will he make it through the night?”
The doctor shuffled his feet uncomfortably, “He is a very, very sick little boy. He shouldn’t.” He thought a bit more, “But he probably will. That has nothing to do with me and nothing to do with you. We are out of the equation. This is between him and God.”
While there is always hope in Christ in all things, the acceptance of God’s love for J.J. and the need to give the control over to God brought peace in the midst of yet another bedside vigil through the darkest of nights. Acceptance of God’s sovereignty brought peace. Now for the rest of the story. Today J.J. is a delightful young man who loves to shake hands and is quite the flirt, though that may be reserved for pastors who bring him blueberry pancakes.
Perfection is Over-rated
Ours is not a perfect family and for that I can truly praise God. In Japan there is a beautiful style of art called Kintsugi, broken pottery repaired with seams of gold, as seen on the cover of Special Needs Parenting: From Coping to Thriving. Through its brokenness the pottery is made stronger, more interesting, and more beautiful. I think that is what God does through us. God pours his gold into our broken places, making us whole, making us stronger, making us interesting and beautiful in a way that surpasses what others would call perfect.
My hope is that through this book and the suggested tools readers find a new sense of wholeness as parents. They are tools to revisit again and again. Becoming a resilient parent takes intentional focus and it takes time. I pray that special needs parents feel the equipping power of God walking beside them on the journey ahead.
Special Needs Parenting: From Coping to Thriving is available at Huff Publishing.