Did you know that many families who have children with special needs don’t attend church? Or that many parents of children who have special needs are isolated and feel lonely—it’s just too hard to go out in public—and battle depression?
I didn’t know these things before our gorgeous, amazing Eden was born. She’s one of the single greatest blessings of my entire life, and I wouldn’t want to imagine life without her. The Lord has taught, changed, and sharpened me in countless ways just through her. She blesses me and makes me smile with joy every single day.
I’m going to be honest, though, and admit that being a parent of a child with special needs can be exhausting—physically, mentally, spiritually, and emotionally. Parenting is exhausting in general, but this is a different kind of tiring. Some of that comes from the extra needs of the child, but some of it comes from the ignorance and the constant assumptions, comments, and actions that we endure from the “outside” world.
I have been a mom for over 13 years, and for the first seven years, I was a mom to only “typical” children. When Eden was born, I felt like the Lord opened my eyes to a whole new world—a forgotten and unrecognized world. So, I want to share with you from experience 10 practical ways that you can love your friends and loved ones who have children with special needs:
1. Know the right lingo.
My daughter Eden has Down Syndrome, but that’s not who she is. It doesn’t make much sense to say that “downs kid” or a “Down Syndrome baby” or “she is Downs.” Eden isn’t “downs.” She simply has Down Syndrome. Also, a child without special needs is most accurately referred to as “typical,” not “normal.” “Normal” is associated with being “good,” which would mean that children with special needs are not good. That’s not even close to the truth or the message we want to give.
And there’s the word “retarded.” I’ve heard some of the most mature, respectful people I look up to use that word. It’s time to intentionally remove it. Most people don’t use it to make fun of a person with special needs, but use it to poke fun at themselves or at someone else, but it’s still a knife twist in the heart every time. This isn’t about being politically correct. It’s about respecting the dignity of all people.
You don’t need to be perfect. We just want to know that you are there, you are trying, and that we have your support.
2. Make families who have children with special needs feel welcome at church.
I have hundreds of Facebook friends who are special needs parents, and I regularly see a post about someone who wasn’t welcomed to or was even asked to leave a church due to their child with special needs. If these families should feel welcome anywhere, it must be at church!
We implement something called an ISP, an Individualized Spiritual Plan, at our church to help with this. We sit down with the parents and ask what their child needs so that they can attend the service. Some kids don’t need anything, while others need a buddy to hang out with during Sunday School. It doesn’t have to be perfect, but we should make an effort to welcome these families.
And consider giving the special needs parents at your church a break. Don’t immediately run to one of the special needs parents when an extra childcare worker is needed. Many special needs parents get few breaks, and their children require extra physical work and attention. So, when the parents do get to be at church, it would be great to let them talk with other adults, learn, and rest.
3. Don’t take it personally.
More often than not, special needs parents spend a lot of extra time on the phone with insurance companies and doctors, in specialists’ offices, and researching issues that their child is facing—all on top of “regular” life. I have found it more challenging to be a good friend and family member since Eden was born.
Please don’t take it personally when your friend who has a child with special needs doesn’t return your text or phone call. She loves you, but she really needs your grace and understanding. Don’t give up on her. Keep texting and calling. I have amazing friends who check in on me, send texts, or just tell me that they’re praying for me, even when I have nothing to give in return. It’s a beautiful picture of unconditional love.
4. Sometimes, fewer words are better.
Let your friend vent, acknowledge her struggles, and just listen, even though it’s tempting to try and relate. What we go through as parents of children with special needs can be unimaginable. Eden had colon surgery at 1 week old, open heart surgery at 3 months old, spent 4 months in the hospital, and many more hard things. I know you’re trying to empathize, but it truly is just best to listen, hug, and even cry with your friend.
5. Love her child(ren) with special needs.
Get to know her child with special needs. Learn the child’s likes and dislikes, what calms the child down, and what makes her happy. Learn about the child’s diagnosis and ailments. I have an amazing friend who looks for opportunities to love on my child and gives me little “breaks,” especially in social situations. She’ll hold Eden on her lap so I can actually eat a meal, or she’ll play with Eden for a minute so I can have a conversation with another adult. It means the world to me.
6. Love her child(ren) without special needs.
Whenever our family enters church, someone’s house, or anywhere else where we know people, the first word we usually hear is “Eden”! When you have a child with special needs, that child can often be the center of attention, but it can be hard on his or her siblings. Our other three daughters handle the attention on Eden quite well, but I’m sure they would like some too. My husband and I are very aware and sensitive to this and work hard to make sure we are spending quality time with all of our daughters. You can love your friend by loving her “typical” children too.
7. Only give parenting advice when she asks.
Eden’s Down Syndrome means that she has an extra chromosome in every single cell in her body. It affects everything. There are no easy answers for things she faces. With our older three girls, I never had to think about working hard to teach them how to eat, take steps, or jump off of two feet. I guided them, but it was more of a natural flow of development for them. For Eden, though, all of those development markers took a lot of hard work, therapy, and occurred at a later age than our typically developing children.
Additionally, Eden has faced multiple major medical issues and complications. Nobody can understand the complexity of what we’ve been through, and there is no simple fix. I have received numerous messages about some pill or powder that will fix my child. It’s not helpful and can be quite exhausting. This goes for behavioral issues, as well. Different approaches must be taken for each child, and unsolicited advice can be more harmful than helpful.
8. Don’t generalize all children who have the same diagnosis.
People with Down Syndrome are not happy little angels all of the time. Just spend one day in our house, and you’ll see. They are people with real emotions. They get sad, angry, frustrated, and hurt. They have strengths and weaknesses and varying abilities. The Down Syndrome community is as diverse as the rest of us. You can’t get an idea of what Down Syndrome is like just from meeting one person with it. So please, treat each person with a special need as a unique person—not as the preconceived idea you have about their diagnosis.
9. Include her.
She’s busy, and probably overwhelmed and stressed, but she still needs friends, and fun. Invite her to girls’ night out or out to dinner, even if you think she’ll say “no.” It doesn’t hurt to ask, and at least she’ll know that she’s loved.
10. Don’t walk on eggshells.
After reading this long list of what to do and not to do, you may feel discouraged, but you shouldn’t. You don’t need to be perfect. We just want to know that you are there, you are trying, and that we have your support. If having a child with special needs has taught us anything, it has taught us to have hearts full of compassion. And I promise, we will have compassion on you as you take on the brave and awesome roll of being our friend or loved one.
We absolutely adore our children. It is our privilege and honor to love, care for, and raise them, but we need the support of our schools, churches, communities, family, and friends. We can’t do this without you!
This article originally appeared here.
