Every mom likes to think her child is one in a million. My son is one in 68. I can say this with certainty because my second son, Ryan, has autism.
April is Autism Awareness Month with April 2nd specifically being “Light it Up Blue for Autism” Day. Tomorrow I plan to wear blue. Wanna join me? Other than blue, it will be just another day around here. We’ve been living with autism for quite a while.
Here’s the quick and fast basics about autism. It is a pervasive developmental disorder affecting speech and language, behavior, and sensory needs. “Pervasive” just means it affects multiple areas of the individual’s life. In 1980 autism was being diagnosed at the rate of 1 in 10,000 kids in the US. When Ryan was diagnosed in 2002, the rates were 1 in 150 kids. In 2014, the CDC declared this a crisis as the rates reached 1 in 68.
While some may blame better testing techniques or a knee-jerk tendency to label everyone with something for the climbing rates, those reasons cannot account for this level of increase this fast. Statistically that’s impossible in 35 years. Something is causing these rates to rise and no one knows what.
In another post I’ll talk about theories on causes and treatments. But today I want to share from my heart about my 1 in 68.
Autism is a spectrum disorder. That means that no two individuals with autism manifest it exactly alike. It ranges on a spectrum from severe to mild. Some individuals are severe—unable to talk or having limited ability to communicate. For some, it is mild, manifesting in a few quirks. These individuals can grow up to have careers in specific areas they excel in. Think Sheldon on Big Bang Theory. Any mom of an autistic child sees the signs in that character. “You’re in my spot.” “It’s Tuesday. We have Thai food on Tuesday.” Ryan falls in the middle, leaning toward mild.
While Ryan has autism, I don’t believe autism is all he is. He is my child. Ryan is as much of a blessing to me as his siblings. He is quirky and fun, creative and smart. He’s hit 6’1” at age 14 and I’m not certain he’s done growing. He possesses many interests including art, music, landscaping, and a variety of sports with Special Olympics. He is thriving in the regular high school classes—just with a little help. Since his father died, when he picks up that mom is stressed, he tries to give me backrubs. It’s sweet.
He has taught me patience I never dreamed I could have. He has opened doors for me to share what I have learned with nursing students, children’s workers at churches, and with moms fearful of the warning signs they see in their own children. Because of what I have learned I can offer them advice and hope. I have learned how to navigate special education systems and understand parents’ rights. I’ve learned how to balance being his zealous advocate with being an ally of teachers who truly desire to see him succeed.
It’s because of Ryan my first freelance article was published in Children’s Ministry Magazine several years ago (Meet My Son). Taking him to church used to be an experience that caused me such anxiety. I found a way to help other parents by sharing what it feels like with children’s volunteers and pastors. I still enjoy doing trainings with churches—large and small—to help workers understand how to include special kids.
Raising a child with autism requires I have patience. It requires I notify him in advance of change or new plans. He takes many medications and vitamin therapies and is on a gluten-free diet. I need to calmly help him work through frustrations or disappointments that other kids can quickly let go. It means making exceptions or different expectations because his abilities are unique.
Parenting a child with autism requires a new learning curve. It’s one I embraced early on. God gave me this child with special needs therefore it was my job to be the best mom I could be for him. I mess up, just like with his siblings. But more often than not I do a good job with him. So this month I will relish in sharing what being Ryan’s mom has taught me with my readers. The more people who understand autism, the better off the world will be.
If you are with a church and you’d like me to come speak to children’s workers about including special needs children, please contact me. Church is often a scary place for special needs families to attempt and every child should feel welcome in God’s house.
Don’t forget to wear blue for autism on April 2nd!