What Are the ‘Special Needs’ of a Special-Needs Family?

Heather Brower • 16 minutes

Did you know the term “special needs” is probably on its way out of use? I was surprised to hear this myself. I’m in the special-needs community as the mother of a 13-year-old who has autism. (Or who is autistic—but that’s another topic!) Anyway, there’s some really sound logic as to why it might be better to go ahead and talk about the needs of someone who has a disability without calling their needs “special.”

I mean—don’t worry! The point of this article is not to scare you and make you think you’re saying the wrong thing! Far from it. If you love us and our kids, we can feel it! I, for one, would never be offended if you said my son had special needs. But the thing is, we don’t always feel we’re that special.

The logic goes a little something like this. People who have intellectual, social, physical, emotional, or mental health disabilities don’t have uncommon needs. They need inclusion, support, friends, love, etc. Don’t we all? Those needs aren’t “special.” They experience the world in ways that are vastly different from the way many do. But, they don’t need to eat dinosaur eggs or something. They may need extra support, but they don’t really need anything that’s unicorn-level “special” to get through life.

Which brings us back to the families of those who have disabilities, differences, and as we so often call it, special needs. What are the ‘special needs’ of a special-needs family? Turns out, there are some basic, human needs that special-needs families often display in spades. And—you guessed it—they’re not that special at all.

But, let’s not get too carried away on a cloud of optimism just yet. Just because the needs of a special-needs family aren’t “special” doesn’t mean they’re not real, substantial, urgent, or pressing. In fact, the opposite is usually true. Often, special-needs families are living under real, substantial, urgent needs that are chronic.

It seems what’s “special” about the needs special-needs families face is their sheer volume and intensity.

I asked some of my friends who are also parents in the special-needs/disability community to let me in on some of the needs they’re struggling with the most. The results? Yup. There are needs. Many. It seems what’s “special” about the needs special-needs families face is their sheer volume and intensity.

We’re balancing a lot. We have therapists to see—I remember when we had Speech, Occupational Therapy, and Special Ed. services coming to our house, often all on the same day. We may have dietary changes and restrictions. We have to educate ourselves on how to raise a child who has (fill in the blank) diagnosis or disability—which often feels overwhelming and more complicated than we can manage. We have estate planning to think about because we can’t predict if our child will ever be able to live on their own—in many cases, we know our children will need full-time living assistance for the rest of their lives. We also have a bit longer for most of the more intensive phases of parental caregiving—our kids may not potty train on the same schedule as their peers, or at all. Their sleep patterns often aren’t as easy to nail down. We may not get to hear, “I love you, Mom and Dad,” when we thought we would.

And what about our spiritual needs? Are there any unique spiritual needs special-needs families face? Nah. Again, they’re the garden-variety needs anyone may face through life. And again, they just tend to be amplified a bit. As a whole, those of us who are raising kids with disabilities are familiar with working through a few common issues.

Here are a few things my friends and I feel have been some of our more significant needs.

We have some expectations and anger we need to let go of.
We need a place where our family can worship and serve together.
We need extra support so our kids can attend children’s church.
We need to learn how to meet our child’s spiritual needs on their level.
We need to learn how to advocate with love, tact, and plenty of Jesus.
We need to ask for what we need.
We need friends who don’t scare easily.
Bottom line? We need to lean on God more than we ever thought we would. Feel free to click through any of the above to read the parts of this article you’re interested in. Or, just keep scrolling!

We need to learn to let go.

Mom, Dad: You are not in control of your child’s development. You can help, encourage, nourish, and pray for your child. But, again, you are not in control of their development. Moms and dads who are raising kids with disabilities will learn this on a more profound level than other parents. We’ve known for a long time that our kids have their own mind and their own timeline. We need to let go of our pre-supposed ideas of how our children will turn out. It’s freeing!

That’s not to say it’s always happy or pleasant. We need to take time to grieve the loss of our own dreams for the family we thought we’d have. It hurts when we realize all the things our child may never be able to do. But, when we finally let go of our preconceived expectations, it allows us to parent our child for who they are. For who God made them to be.

My friend Shelly said she occasionally struggles to let go of her original hopes and dreams for her family. She is raising two daughters who both have physical and cognitive disabilities. She said, “When I am feeling weak, I ask God, Why can’t we have just one ‘typical kid’ day? Just one day where the girls can get themselves dressed, one day where they can read a note, one day where they can talk about typical teenager stuff, one day where they get to experience a slumber party … but I know that these days will likely never happen this side of heaven.”

Every one of us who are in this special-needs parenting gig need to let go of that comparison trap. It’s nothing but pain and dead ends. Shelly said when she finds herself struggling to stop comparing and let go, she prays. “I ask God to bless what my girls are doing, bless the friendships they do have, and most of all, wrap them up tight in His love, protection, and joy.” That is living in true freedom.

Right next door to grief lives anger. It’s something we struggle with from time to time. Often, it stems from the pain of comparison. But it can also stem from just being angry over what our children have to endure to get through each day. But, again, that kind of anger is a dead end and doesn’t lead to healing. And it’s another big thing we need to let go of. My friend Sarah put it like this: “I used to think Madelyn’s disability was the ‘mountain’ that I needed God to move (or fix). But I’ve discovered that the ‘mountain’ is my anger, not her disability. Instead of praying for God to fix or change her, I need to ask God to change me—all the time!”

We need a place where our family can worship and serve together.

Okay, this one seems like a no-brainer, but it is no joke. I know of a mom who was asked to leave (I hope you’re sitting down) 11 churches. Why? Because her child was too difficult for the children’s church workers to handle, and she certainly didn’t want to stay in the grown-up church experience. So, she was asked not to come back. Thankfully, this family’s story didn’t end at 11. This mom bravely decided to try church number 12, and she found her home. This time, she was told her child could have a one-on-one support to help her child. It made all the difference. Her child doesn’t communicate with words much, but she now hums the music she’s learned at church every time her mom pulls in the church’s parking lot!

Consider serving at your local church or in your community. As your child gets more comfortable at church—and if this option is available—maybe you’ll find yourself in a position where they can stay in the programming twice in a row so you can attend church and then serve at church. If your child is older, maybe they can serve with you. Does your church need help with serving refreshments? Greeting people? Cleaning up? Setting up chairs between services? Could your son or daughter help you with these serving opportunities?

Ask if your church has weekday serving opportunities. My friend Blake has a seizure disorder and intellectual disability. But he serves most weekdays at my local church campus. He stocks the supplies for our children’s programming. He sets up the chairs in the sanctuary and does many helpful tasks for our staff. He’s well-known and well-loved here. He said, “I like being here because everyone knows me. They also know when I need help, like if I’m going to have a seizure.” Blake’s dad told me that serving at church throughout the week has given Blake a renewed sense of purpose.

My friend Sarah said this about what serving and being involved in her church community has meant to her family’s well-being: “We’ve been connected for a long time, but after Madelyn’s diagnosis, the support of the people we served with was instrumental in keeping us connected. I felt so overwhelmed and alone, but knowing I’d be serving with people who prayed for me and supported me made me never want to miss. Even now, the people I serve with are so encouraging and supportive. Also, LifeGroups we’ve been a part of along the way have been a big factor.”

The Body of Christ isn’t complete without our families. We need the Church and the Church needs us.

So, don’t give up. The Body of Christ isn’t complete without our families. We need the Church and the Church needs us. Don’t ever believe otherwise. Try calling a church before you show up on the weekend. Maybe they can let you visit the church on a weekday so your child can get familiar with what they will see and experience on the weekend. Seriously. Don’t give up.

We need extra support so our kids can attend children’s church.

My son used to make the children’s church workers cry. He would do whatever he could to run out of the rooms. If he couldn’t make it out, he’d throw toys out the door. He couldn’t sit for any of the lessons or tolerate other kids in his space. (And if you know 3-year-olds, then you know personal boundaries aren’t exactly their strong suit.) He needed more support than what was currently in place for the other kids. A one-on-one helper was exactly what he needed.

If you think your child will need extra support, ask if it’s available at your church. I’m so happy to say that every Life.Church campus now has a Buddy program available for ages birth through 6th grade every weekend. They can work with any child who may need it, from helping cope with separation anxiety, to offering sensory breaks, to helping them grasp the spiritual lesson they’re working on for the week. We’re also working on making sure there’s support available for students who need it at our Wednesday night programming for 6th through 12th graders.

We need to learn how to meet our child’s spiritual needs on their level.

Getting from breakfast to bed each day can seem like all we can manage. There are medical, social, emotional, educational, and physical needs that seem to crowd out all the headspace we special-needs parents had left for addressing our kid’s spiritual needs. How can I teach my 12-year-old about life in Christ when I’m still working on potty training her?

My friend Sarah said, “Sometimes I feel apathetic. Does it really matter if I teach her ‘xyz’ spiritual lesson right now when there are other pressing issues? I need to keep reminding myself that it does matter.” I think Sarah is right. We don’t have to get out in-depth curriculum. But, we can share our faith with our kids, no matter their ability level. And, we can rest assured that God knows the heart. He is not concerned with expressive or receptive language ability. He is able to reach our children and minister His love to them, no matter what.

We need to learn how to advocate with love, tact, and plenty of Jesus.

Oh, man. This is a tough one sometimes! As we’ve already discussed, our kids have needs. Big needs! Our families have needs. Big needs! But, sometimes we’re too afraid to express those needs. Maybe we’ve been trying to tackle everything on our own for too long. And maybe it’s built up a bit of frustration and resentment over time. We’ve got to be able to speak up for what we need in a loving way.

And, with God’s help, we can! We may need help with some self-awareness. My friend Alice has always had an air of calm and grace every time I’ve ever seen her. When I asked her how she advocates for her son who was born with a rare genetic condition that greatly affects his physical and cognitive abilities, she said, “Practically, 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 very quick to listen, slow to speak, and slow to anger when I picture Him present.”

So, be like Alice. Alice is being like Jesus, so being like Alice is being like Jesus. Thanks, Alice!  

We need to ask for what we need.

Okay, so this one is closely related to the previous one. Honestly, advocacy is just asking for what you need in an enlightening and empowering way. So, once we’ve learned to advocate properly, we need to continue to ask for the help we need—both for our children and for ourselves.

Special-needs parents, has anyone ever said, “Let me know how I can help,” to you? But then, you just nod and smile. You feel thankful. You even try to think of something you need help with, but you just can’t seem to form the words. It’s the weirdest thing. Diane Dokko Kim wrote an awesome article about why it’s hard to find the answer.

The best part? She came up with a super practical way to let your friends know where you need help right now! It’s called the Help Wish List. It’s free, and it’s a great and empowering way for us to ask for help when we need it.

We need friends who don’t scare easily.

My kid is the loud kid. He’s the kid who’s most likely to break something at any given moment. He’s the kid who is still learning about boundaries of every kind. And, he’s not always easy to be around.

Special-needs families know they have kids others might find annoying, frightening, perplexing, or even depressing. We need friends who will say things to us like, “Come on over! We’ll make this work.” Or, “Can we come to your house? Will that be more comfortable for your family?” Or, “You can tell me what you’re struggling with, and I won’t judge you.”

Phrases like that are life-giving. I’ve been so grateful for the friends in my world who don’t flinch when I tell them about the struggles I’m having. We need friends who will not get disappointed with us, roll their eyes at us, or dismiss us abruptly when we come to them with the heaviness that sometimes weighs us down. If you’re the friend of a family who has found themselves dealing with special needs, lean in.

The funny thing is, God doesn’t just give kids with disabilities to parents who are experts in dealing with their particular disability. Nope. I was a music major in college who studied opera. There’s not a whole lot about Puccini that’s helped me understand autism and how to raise a healthy autistic man.

It’s the same for the friends of families affected by disabilities. You’re not an expert. We get it. You’re a friend. And we special-needs parents need you!

Bottom line? We need to lean on God more than we ever thought we would.

I can promise you this, parent of a child who has a disability: You will make it through your parenting journey far more joyfully and resiliently by relying on God.

Are we upset at God sometimes? You bet. Do we understand why He picked us for this journey? Not usually. And, if He picked us for this particular path, then why did He leave so many bumps in the road? Still not sure.

But we know that God has a purpose in pain. He lets us wrestle with Him when we question His plan. He is refining us. He is drawing us closer to Himself.

Children with disabilities are not accidents to be fixed but unique masterpieces to be appreciated.

And we know for sure that He has a master plan for each of His children. They are not mistakes. My friend Alice said, “God has created each and every individual with talents to help grow the Church and each other. This also extends to individuals with disabilities. Sometimes their giftedness doesn’t fit neatly into our definition of talent—as defined by our culture and what we see played out in social media—but this doesn’t mean they don’t have any. Disability or not, we have a purpose and a reason for our existence. Children/people with disabilities are not accidents to be fixed but unique masterpieces to be appreciated.”