Special Needs Parents: How to Become an Advocate for Our Families Without Losing Our Faith

Heather Brower • 12 minutes

It’s 1:35pm and your phone rings. It’s the school. Again. And they just can’t with your kid anymore today. Your palms dampen. Your heart pounds. Shame, fatigue, and anger compete for center stage in your heart. Are they following the Individualized Education Plan (IEP)? Why is it so hard to find help? When will it get better? Why doesn’t God fix this—and why does He feel so far away? 

Most of us who have kids with various differences and disabilities have experienced this scene and these thoughts. You know you need to do something different to get help for your child—but you feel like if you open your mouth to ask, nothing very godly is about to tumble out. It’s time for some new strategies. It’s time to learn how to become an advocate for your child, yourself, and your family without losing your faith! 

When it comes down to it, we’re going to need to ask for help for our kids, ourselves, and our families. We need advice. We need help. And sometimes we need to stand up for ourselves and our families and ask for the help we need. When we do, we’ll find it’s so much better when we remember not only who we are but also who we represent. 

I’m the mom of a 14-year-old son who is awesomely autistic. Sometimes he has needs that are perplexing or may feel bigger than what I think he, our amazing school, our friends, our therapists, and my husband and I can handle. Sometimes that causes frustrations inside me that I don’t even realize are there until they come out all sideways. Like when I suddenly burst into tears while school supply shopping because I’m frustrated that good sensory calming items are so dang expensive and hard to find! 

Crying to the Target lady probably won’t change anything. Allowing bitterness, resentfulness, or entitlement to creep into my heart won’t change anything for the good, either. So, I’ve learned a few tricks—and I’ve gotten some great advice from fellow parents who are raising kids with disabilities and differences of all sorts. 

What if your next IEP meeting, call to the school, or conference went so well that you were able to invite your kids’ teachers to church with you? What if you asked with so much love and even humility that your neighbors offer even more help than you originally asked for? What if your church community is excited to fill in the gaps where your knowledge and expertise leave off—and you get a close-up picture of how dazzlingly beautiful the Body of Christ is! 

Here’s how to become an advocate for your family: 

1. Release some pressure. Whenever you feel your body or your thoughts begin to stress, breathe. Breathe slowly. In for a count of eight and out for a count of eight. Try this several times. Try picturing yourself handing over this situation to God, literally. As if you could put it into a box and slide it across the table to Him. Why? You will not be an advocate for anyone if all you’re seen as is a rage machine. No one can respond as well to an angry tirade as they can to a coherent, calm request. In fact, dealing with stress is something you will need to do regularly. Stress is usually a daily part of the special needs life. Talk to a counselor or trusted friend today if you’re not sure what you should do to help you cope with stress (1 Peter 5:7).

2. Retreat when you can. Think about your situation as if it were someone else’s situation. Is it possible your reaction is stronger than it needs to be? If you’re sure your child needs someone to stand up for them, then skip ahead to point three. But if you’re not sure whether it will help to say something, consider this. What are the pros and cons of advocating for a change or a support in the particular situation you’re in? When a stranger at the grocery store mentions something about your child’s behavior, there’s probably no need to waste your energy advocating. Did you overhear a teacher being a bit snippy with your child? Maybe it’s just a bad day for them. Did another child skip over your child when sending out party invitations? Maybe the party would’ve been too much anyway. Maybe they’re just plain afraid of what it would be like to include your child. Other people’s choices might hurt you or your child. But sometimes, the most loving thing you can do is ignore the offense. Always ask God for discernment to know which battles to choose, and which to let slide (Proverbs 19:11).

3. Respond, don’t react. Okay, you’ve calmed down a notch. You’ve decided the situation needs to be addressed. Now it’s time to formulate what you want to say. How will you respond? How will you advocate well? My friend Alice has tons of wisdom to share. Her son is affected physically and intellectually by a rare genetic condition. I love what she said about how she advocates for her son—without losing Jesus! 

“When it comes to educational advocating, it’s good to remember everyone is on the same team. The goal for the educator and for the parent is to make sure the child succeeds. Remembering everyone is working together on the same goal is a helpful mindset.

 The second thing to remember is to be courteous and gracious. I have found it’s better to state my concerns and fears instead of criticizing. If I don’t like something being recommended, I make sure I share my concerns I have about the idea and ask them their thoughts on it. I find just going to the meeting with this positive mindset helps set the tone for the meeting.

Being a medical advocate is a little tougher, but I’ve found great success in being kind and reining in my temper and frustration. It’s frustrating dealing with insurance companies and doctors’ offices, sometimes retelling your request over and over again. I try to be as courteous as possible. Sometimes I fail—and this is when the extra dollop of grace would be helpful.

Practically speaking, the best thing that has helped me is to picture Jesus being present in my meetings, listening to everything I’m saying. I have found I tend to be quick to listen, slow to speak, and slow to anger when I picture Him present.” 

See? Alice hit on a lot of fantastic advice there. If you’re being responsive, not reactive, then you’re covering so many of the important bases (James 1:19).

We advocate to build empathy and understanding for our families. We must be people who practice the same empathy we so desperately need. 

4. Reflect others’ emotions. My friend Sarah is raising a little girl who is also awesomely autistic. I asked her how she advocates without losing her faith. Here’s what she said: “I just try to be kind and remember that other people have restrictions and other things that affect their decisions. I will stand up for her but try to do it with kindness and understanding.” She’s talking about empathy! 

Empathy helps us both think on and outwardly reflect others’ emotions. Maybe your child’s teacher could use some grace this week. Maybe your school really is overburdened and under-resourced. Maybe you can gently ask them if you can help them learn more about what helps your child. Maybe the lady on the other end of the line is new at her job and has never billed for your child’s condition before. Can you imagine how stressful it might be for her? Remember: We advocate to build empathy and understanding for our families. We must be people who practice the same empathy we so desperately need (Ephesians 4:2).

5. Regroup. Okay, you’ve advocated. Maybe things didn’t go very well. Sigh. What would you like to redo or re-say? It’s time to regroup so you’re ready to continue this journey from a better place next time. My friend Shelly is raising two daughters who both have physical and cognitive disabilities. Here’s what she said about advocating with love and grace. “Advocacy can always be done in love (and firmness). I believe there must be a level of emotional intelligence and self-awareness that guides advocacy, in any form, including advocating for my children.” 

Did you catch what she said about self-awareness? It’s a huge piece of regrouping. Self-evaluation is only as accurate as self-awareness. Were you more defensive than you should’ve been? Were you much more stressed out than you needed to be for this meeting? Were you taking things too personally? Is it possible you might need to raise a white flag and ask for grace? These questions can be incredibly hard to ask of ourselves. I mean—a parent certainly needs to speak up for their child. But, there is always room for us to allow more of God to flow through us, isn’t there? Maybe there’s something else in your life that you need to heal from so you can advocate from a more loving and grace-filled place. Honest answers to questions like these can help you move toward the life of love God has asked each of us to live. 

And hey—maybe things went swimmingly. Yay! Do some self-reflection and increase some self-awareness when things go well, too! What did you say that you’d like to remember—and maybe say again if you’re in a similar situation again? What tips can you share with another parent? Where can you see evidence that the Holy Spirit gave you the right words to say? How can you thank God for the way He mercifully moves in and through us? Take a moment to reflect on what went well. Thank God for everything He is accomplishing in your family’s life (Ephesians 5:2, Colossians 3:15).

You never have to wonder if God hears you when you advocate for your child. He hears, He’s in control, and He’s working everything in your life together for good.

6. Remain. Sometimes, it’s just hard to feel like you want to stick around with God. It’s okay to feel that way. It really is! God is big enough to handle your resentment or anger toward Him. He certainly doesn’t want you to feel that way, but He’s not threatened by it—and He’s not going anywhere. In fact, if you let Him know how you’re feeling, He will help you work through it until your relationship with Him is restored! Here’s the big thing to remember: God is your child’s biggest advocate. You never have to wonder if He hears you when you advocate for your child. He hears. And He’s in control. Oh, and He said that He’s working every detail of our lives together for the good of those who love Him. He can open doors no one can shut. He can soften hearts, change minds, and make a way where there seems to be no way! Stay. Don’t lose your faith in God. Stay glued to His grace (Romans 8:28, John 15:5, 2 Corinthians 12:9).

7. Repeat. Advocacy is more of a lifestyle than an event. Same with your decision to follow Jesus, right? You don’t come to Jesus, pray a prayer, and leave. You walk together. You ask Him for help along the way. You learn from Him. You change and soften in the areas He asks you to. And you grow stronger and more courageous in the areas He asks you to. I think you’ll find that the closer you stay to Jesus, the easier it is to advocate for your family. It will take time. And it will certainly take repetition. But when you speak with the love and wisdom of Christ, you’ll find more people begin to hear your voice (2 Corinthians 3:18).

My friend Crystal is raising an awesomely autistic son. She helps run a nonprofit organization in my state for families touched by autism. Oh—and did I mention she’s a single mom? Yeah. She’s amazing! When people like her speak, we should all lean in and take notes. I asked her about how she advocates for her son and represents Christ well. I think she summed up this whole advocacy thing perfectly. She said, “I believe that God has instilled in me that I must act with grace if I want others to have grace for my son’s differences. Grace is the glue!” 

Grace can glue families together. Grace glues us to God! Grace for the ones who hurt you. Grace for the ones who just don’t understand. Grace for yourself as you make mistakes along this journey. Believe me—I still occasionally struggle with less-than-Christlike thoughts when I find myself needing to advocate for my family. But I’m staying glued to the grace of God’s loving arms. He is faithful to gently correct me where I need it. He gives me courage to speak up when needed. He gives me discernment to know when it’s my turn to be silent. From one parent to another: You can do this. God is with you. He always is. And you can believe there are others in your school, church, and community who can’t wait to link arms with you and your family.