“The “sand” reference came from a statement Noah made before his diagnosis – a clue that the texture of the strawberry jelly in his sandwich bothered him. But over time, it became a metaphor for the messy, inconvenient, uncomfortable things God had permitted in our lives,” Sarah Parshall Perry, bestselling author of Sand in my Sandwich: and Other Motherhood Messes I’m Learning to Love.
By Ron Sandison
Q. What are some lessons God has taught you raising two sons on the autism spectrum?
I love to tell people that chaos is God’s order in disguise. God has a way of de-constructing the things we cling to; environments we’ve carefully crafted. In that way, He accomplishes His aims through us. My boys prove this every day. I never felt “equipped” to raise boys with special needs – no one does! – but the Lord had a plan. Only in hindsight is any of that becoming visible, now.
My boys have also taught me the value of simplicity. They see the world through a filter of primary colors, major themes, heightened senses. They find beauty in nature, in the taste of a cookie, in a cozy pair of PJ’s. I tend to make life more complicated than it needs to be, and I can lose sight of the beauty all around me. My boys are great at reminding me that our messy, chaotic life is full of hidden glories.
Q. How has your faith in Christ empowered you in parenting?
I don’t know how anyone parents without Jesus! This is the most important, highest-stakes work I’ve ever done. Every day, I breathe the same prayer: “God, make me the best parent I can be.” Sometimes, when things are imploding, it just comes out as “HELP!” I rely on God’s promise that He will give us wisdom, if only we ask for it (James 1:5), and I ask for it ALL the time. I spend more time in prayer about my kids than about anything else.
Q. What has been your greatest joy and blessing raising your sons and daughter?
My greatest joy has been in realizing the incredible capacity we have for love. I am still amazed at how excited I get to see my kids after they’ve been at school. That instantaneous, eat-them-up kind of love for my kids – the wild, immediate love that flooded me in the delivery room – it never went away. Miraculously, it’s only grown. I love thinking that this is how God loves us. I love to imagine us bringing God the delight my kids bring me. As a mom, I understand uniquely why God chose the parent-child paradigm to describe our relationship with Him.
Q. What advice would you give to parents whose child was recently diagnosed with autism?
Believe it or not, I’d say “congratulations!” God gives these incredible kids to parents He believes are up to the task. And to be fair, we’re also kind of lucky – we get a certain set of blessings the rest of the world isn’t fortunate enough to experience. I’d also want to remind parents that our children are part of a perfect design. God doesn’t make mistakes, and a diagnosis doesn’t change who our children are – it simply gives us access to the services they’ll need. The expanding science on autism provides us with a wealth of opportunities to ensure their best possible lives. Once we are faithful to do our part, we can fully trust God with the outcome.
Q. How have you helped your sons deal with sensory issues?
I’ve learned to be flexible, and have been willing to modify. I’ve cut off tags, pant legs, buttons, and belts. I’ve scoured the internet for “autism friendly” sensory toys and products, changed what food we buy, and because they both love heavy pressure and soft surfaces, I often give up my personal space in favor of being squished, laid on, or tugged at. Each boy is different, but they are similarly vehement about their likes and dislikes. For example, Jesse hates dairy, but his brother Noah drinks nothing but milk. The boys only wear tag-less athletic clothing, and each one has a tool – either a full-body “sensory sac,” or a “chew stick.” So much of parenting them is just watching and listening. By making them physically comfortable, I give them every chance to succeed.
Q. How have you helped your sons learn social skills?
I owe much of our success here to my husband, Matt. When Noah was six, Matt encouraged him to join a youth football league, and took the head coaching position so Noah would have a touchstone during the season. I was concerned we were pushing him too hard, but Matt realized that if we were going ensure a mainstream education, Noah would have to master social skills like reading facial cues, taking turns, and being empathetic. Noah’s played lacrosse, football, basketball, and wrestling. Every experience is easier than the last, and we’ve filled in the gaps with therapy at an autism clinic here in Maryland.
We had an easier time of it with Jesse because as the youngest of three, he’s a natural mimic, and wants to do what his siblings do. His autism is also milder than his brother’s, which also helps. But both boys still struggle with empathy. This is a unique challenge for me, as I’m a very sensitive person, and sometimes find myself on the receiving end of an unintentional wounding. We also make sure the boys always have lots of exposure to people beyond school, though we’ve learned to recognize when they’ve hit their limit. Because they’re required to make so many more choices during the day than a neurotypical kid, they can also tire quicker. Once Noah seeks out a quiet place to “hide,” we know it’s time to go.
Q. What has been your greatest struggle raising sons with autism?
As the boys grow and evolve, so do their struggles. Once, it was learning to tie shoes, or make eye contact. Now, we’re working hard with Noah on the fact that his “difference” doesn’t mean that he is somehow “less than.” He’s 13 and has just moved to a new middle school. At a time when peer pressure is already at its zenith, Noah feels particularly singled out when his special education coordinator provides him learning tools throughout the day. We’ve had to remind Noah that success by way of his available resources is still success. Like many children with high-functioning autism, Noah and Jesse also struggle with anxiety and depression. As they’ve grown, their clinical picture has become more complex, and we’ve had to readjust our parenting priorities.
We spend much of our time focusing on the unchanging nature of God when dealing with moods that are subject to change at any time. We remind them that God conquers fear, meets every need, and loves them with an everlasting love. These reminders aren’t just for their benefit. They’re also for mine. I find God has a sense of humor when it comes to kids. For me, this has manifested as a requirement to repeat the lessons I haven’t mastered (even when it looks like I’m just passing them on to my kids).
Q. What inspired you to write your bestselling book Sand in my Sandwich?
A common refrain in my life is, “Only you, Sarah!” And at a time in my life where my kids were entering school and I was at a professional crossroads, it dawned on me that if God had called me to write, perhaps He wanted me to write about was right in front of me. In 17 years of marriage, Matt and I have seen more than some people see in a lifetime: bankruptcy, foreclosure, miscarriage, my husband’s bipolar diagnosis, lay-offs, losing my younger brother to cancer, my auto-immune disease, the autism diagnoses, and more.
The “sand” reference came from a statement Noah made before his diagnosis – a clue that the texture of the strawberry jelly in his sandwich bothered him. But over time, it became a metaphor for the messy, inconvenient, uncomfortable things God had permitted in our lives. We learned that those messes make God visible. When difficulty has you on your knees, there’s nowhere to look but up.
Q. In your latest book Mommy Needs a Raise, what advice do you share with parents?
I include a letter to my 27-year-old self at the end of MNAR. In it, I write about some of the things I wish I’d known before they’d handed me a squirming, red-faced, burrito-swaddled infant in the hospital. You need a license to drive a car, but can take a human being home without so much as a user’s manual. Even after 13 years of parenting, I still find myself blindsided by how much of growing people can’t possibly be anticipated. So some advice:
- Slow Down. Walk slower, breathe deeper, practice restraint. Your kids will have a hard time keeping up with you when they are little, and they will mostly want to hold your hand. But one day you will find yourself racing to catch up with them. Enjoy the pace while it lasts. You will otherwise regret not savoring things.
- Be Kind to Yourself. You will make parenting mistakes. You will blow it. Your children will still love you. If you are kind to yourself, it will help you be kind to your children. It will also help you be kind to others, including other parents. The pit of meanness in this world is big enough already. You must embody true love, because you have known it, yourself.
- Be Swift with Apologies. You will be surprised at how far an apology goes with a child. They are quicker to forgive than adults and they might even follow suit when they make mistakes of their own. Though maybe not so much with their siblings…
Q. How did you begin your writing career?
My undergraduate degree was in journalism, so before I went to law school, I always anticipated writing one way or another. I did plenty of writing after law school, but for anyone who’s read a legal brief, I don’t need to explain how painfully boring that kind of writing is. I wanted to write things that would reach people, that would allow me to be used as a prism for God’s light in a world dark with despair and conflict. The internal hum of recognition I experienced when reading a particular something; that feeling of connectedness to the world and its eternal principles and the recesses of the human spirit from nothing more than a facility with words, that’s what I wanted to do for others. It’s what I pray for, still.
Q. What advice would you give young adults with autism who desire a career in writing or journalism?
I’m paraphrasing a good writer here when I say that good writers do two thing every day: read and write. I make it a point to try and read at least 12 books a year (which is often a challenge with consulting work and 3 kids). Aside from that, I write every day. Sometimes, it’s in a journal on my nightstand, sometimes it’s an op-ed for which I’ll get paid. I’m constantly making notes on ideas I’d like to explore. I consider every time I touch the keyboard or pick up a pen to be practice. Unfortunately, there’s a bit of a chicken-and-the-egg problem with getting published, because those who are credentialed are oftentimes more likely to subsequently be published. So, offer to write for free. The internet is starved for daily content, and the perspective of adults with autism is both unique and beneficial to the reading public. I encourage people to find a topic of interest and blog, start a webpage, or pitch articles to a website or traditional outlet that might be a good match.
Sarah Perry’s Facebook link: www.facebook.com/SarahPerryauthor and website:
www.sarahperrywrites.com
Special Needs Parenting Author Profile
Twitter: @SarahPPerry
Instagram: @SarahPPerry
Link to Sarah Perry’s books on Amazon:
email: [email protected]
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Ron Sandison works full time in the medical field and is a professor of theology at Destiny School of Ministry. He is a board member for the Art of Autism and an advisory board member of Autism Society Faith Initiative of Autism Society of America. Sandison has a Master of Divinity from Oral Roberts University and is the author of A Parent’s Guide to Autism: Practical Advice. Biblical Wisdom published by Charisma House. He has memorized over 10,000 Scriptures including 22 complete books of the New Testament and over 5,000 quotes.
He frequently guest speaks at colleges, conferences, autism centers, and churches. Ron and his wife, Kristen, reside in Rochester Hills, MI, with a baby daughter, Makayla Marie born on March 20, 2016. You can contact Ron at his website or email him at [email protected]
Hopefully Noah and Jesse find their turn-taking and empathetic skills aren’t wasted or dying in a mainstream education.
And the making so many choices – and intentional, conscious choices – can and does tire people out.
Apologies are important.