Warrior Parents

The Lord will fight for you; you need only to be still.

~ Exodus 14:14, NIV

I really should have taken up kickboxing, or just plain old boxing, or something involving a punching bag. I guess I still could. If I’d known all the fighting—or what some prefer to call “advocating”—I would need to do for my son Luke, I just might have.

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Luke had just turned three when he was diagnosed with autism, and that meeting with Dr. Davis, the neuropsychologist, was devastating. My mom came with me that day because Mike had to work, and I remember how mom and I wanted a plan: “Do XYZ and he will get better.” The doctor did give us a plan that included preschool through the school district, Applied Behavior Analysis (ABA) and speech therapy (Luke was talking at that point), but she said it was hard to say what the results would be. After many tears on my part and much reassurance and what I thought was denial on Mike’s part (I was wrong about that!), I hit the ground running. ABA, check. Special needs preschool, check. Speech therapy, check. Back then I didn’t realize that becoming a warrior parent would be required.

Instead of gaining more speech (he had about seventy-five words and some two word phrases from age two to about three), Luke began losing speech until we were down to one word: More! And then that disappeared too. He’s non-verbal now although we do hear from him occasionally. When he is mad, we often hear a loud “NO!”

Luke’s experience in our school district’s early childhood program was awesome. We were so thankful for his team there and that they had a class specifically for kids with autism. So kindergarten came as a complete shock—and not in a good way.

Before school started that fall we set up a time for Luke, Ana (his home therapist) and me to visit the classroom. This was a classroom specifically for children with autism and it was run through a co-op of another school district. His room had a new teacher. I knew we were in trouble when his teacher said, “I’m so glad you brought me this information. I really have no clue what I’m doing.”

Um. What? Come again?
And I’m sending my precious boy to your class, why?

It turned out to be a place where Luke and the other children weren’t taught anything. Where none of the plans were followed, no IEP upheld, and no data taken. So it was time for some fighting on my part. And I wish I had stepped in the ring sooner.

Finally, in February, after a tip from a friend whose son was in the same class, we hired an advocate and got him out of there. In April of his kindergarten year, we placed him at a school for students with autism called Giant Steps, for which our school district pays. It’s a much better place where the staff is actually trained in how to work with folks with autism.

But this didn’t mean my fighting days were over.

One of the hardest, most emotional battles to fight can actually be with our churches. Thankfully, our church is growing in the area of special needs ministry, but not without tears and struggles littering the path. It hurts.

Jesus reached out to those on the margins. He spent time with them, healed them, and had compassion on them. Each of His children is an important part of His body, and He wants them to be able to use the gifts He has given them. When His children with special needs are missing—in some sad cases even asked to stop coming to church—His body is incomplete. It’s a huge mess and really tough when the church is slow to follow His lead. When the families who need extra support and love are rejected, it makes me so mad and so sad.

I love the television show “Parenthood”. Kristina Braverman, one of the characters on the show, has a son, Max, who is on the autism spectrum.

Watching one episode, I got teary when she said this about caring for a child with autism: “What works for some kids doesn’t work for all kids. . . . I feel like the system is broken. . . My husband and I have fought the system time and time again to make sure he gets what he needs, that he’s not overlooked. . . . My son, Max, is a fighter. . . . On behalf of Max, I’ve become a fighter, too.”

For those of us whose loved one is nonverbal, I think we feel what Braverman describes even more acutely. Since Luke can’t talk and tell me what is going on, it’s a huge act of faith to entrust him with others, when I’m not with him. If I find out that something is off in the way he’s treated, my mama-bear response can be quite loud and aggressive. But isn’t it true that we stand up for those we love, just like God fights for us?

When I remember that the Lord fights for me, it’s an immense help as I do battle for Luke, both inside and outside of the church. The Lord fights for us. As Moses led the Israelites out of slavery, they were terrified that the Egyptians were pursuing them. Moses reminded them to stand firm because God would fight for them. And He did! He used Moses to part the Red Sea so that the Israelites could escape. If you have time, take a moment and read all of Exodus 14.

Jesus is the one doing battle for us and our special needs loved ones. We are not duking it out on our own, even if it feels that way sometimes. He is in our corner, and He has not forgotten us. We are not alone in the fight.

Thank you, Lord, for that!

Discussion Questions:

  1. Have you had to do battle for your child on the spectrum? If so, how has it changed you?

  2. Is it easy or tough for you to remember that the Lord is fighting for you and your child/children? Why?  

  3. Re-read Exodus 14:14. What do you think it means “to be still” in this verse?

 

This article is a shortened version of a chapter Deb Abbs wrote in Life On The Spectrum. To read more from Deb Abbs and the other authors of Life On The Spectrum check out www.lifeonthespectrumbook.com or order the book below. Because no two people with autism are the same, Life on the Spectrum’s authors all bring their unique perspective and experiences to the table. Their honest, raw and heartfelt stories show how God is at work in the real-world struggles of families impacted by autism.

 
 

Written by Deb Abbs

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Deb, who graduated from University of Illinois–Champaign/Urbana with a degree in journalism, works as a freelance blogger, as well as a disability ministry coordinator for InterVarsity Christian Fellowship in Illinois and Indiana. Her writing has been featured in several magazines and she was a columnist with the Kane County Chronicle.

She also contributes to Key Ministry’s blog and is one of the administrators of the largest online special needs ministry leader forum, with over 1,000 members.

She lives in the far western suburbs of Chicago, Illinois, with her husband, Mike, their two sons, Brandon, 18, and Luke, 14, plus a crazy English bulldog named Crystal. When not otherwise occupied you will probably find her with her nose buried in a book.

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