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I am thrilled to have my friend, Sara, on the blog today as a guest blogger sharing tips about how to be a friend to those families with a child(ren) with special needs.

Did you know that close to 90% of families who have children with special needs, do NOT attend church?

Did you know that many parents of children who have special needs are isolated and feel lonely, because it’s just too hard to go out in public?

Did you know that a few children with special needs and their parents practically live in the hospital?

Did you know that many parents who have children with special needs, battle depression?

You didn’t?! Neither did I over six years ago before our gorgeous, amazing Eden was born.

Now please don’t misunderstand me…Eden, is one of the single greatest blessings of my entire life, and I wouldn’t want to imagine life without her! The Lord has taught me, and changed me, and sharpened me, in countless ways; just through her little life.  She blesses me and makes me smile with joy every single day! However, I’m going to be honest, being a parent of a child with special needs can be flat out exhausting. Physically, mentally, spiritually, and emotionally.

I know that parenting is exhausting in general, trust me, we also have three other daughters; I get it. But this is a different kind of exhausting. 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 must endure from the “outside” world.  Yep, that is one of the most exhausting parts. So, I’m not here to judge; I’m here to help!

I have been a mom for over 13 years, and for the first 7 years, I was a mom to only “typical” children, so I too have been in your shoes. You don’t know what you don’t know!

When Eden was born, I felt like the Lord opened my eyes to a whole new world. A forgotten world. An unrecognized world. Before Eden, I would see special needs parents, and just think they were doing great!!  They seemed so strong, and capable, with smiles on their faces. No help needed; they were super heroes!!!  Well, I was wrong. We’re not super heroes, don’t let us fool you! We’re just ordinary, tired parents, loving our children who have extra challenges and needs; because, wouldn’t you?

I honestly feel like I could write a book, and maybe I will, but for now, here are just 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. So it doesn’t make much sense to say that “downs kid” or a “Down Syndrome baby” or “she is Downs”. Do you call a child with Leukemia, that “cancer kid” or say “he is Cancer”? Of course you don’t! The cancer isn’t who that kid is. And Down Syndrome isn’t who my kid is. Eden isn’t “downs”. Eden has Down Syndrome.

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.  And that’s not even close to the truth or the message we want to give!

And finally, lets talk about the word “retarded”. Ugh. That one hurts guys. Please watch yourself. I’ve heard some of the most mature, respectful people who I look up to, use that word, and boy does it sting! I know for many people it’s engrained into their vocabulary, but it’s time to intentionally remove it please. They are actually finally starting to remove the word from medical documents because the term has been used in such a derogatory way. Most people do not use that word to make fun a person with special needs, but instead use it to poke fun at themselves or at someone else; but it is still making fun of and disrespecting my daughter and others with special needs. It’s a knife twist in the heart every time. Just be aware of that.

This isn’t about being politically correct. This is about respecting the lives of all people; including those with special needs.

2. MAKE FAMILIES WHO HAVE CHILDREN WITH SPECIAL NEEDS FEEL WELCOME AT CHURCH.

This is a big one. I have hundreds of Facebook friends who are special needs parents, and at least on a monthly basis, I see a post about someone who was not welcomed or even asked to leave a church due to their child with special needs. You may not believe it, but it happens. If a family with a child who has special needs should feel welcome anywhere, it should be at church! At our church we implement something called an ISP, and Individualized Spiritual Plan. This means that we sit down with the parents and ask what their child needs so that they can attend church! For some kiddos it’s absolutely nothing, and for others they may need a buddy to hang out with them during Sunday School. It doesn’t have to be perfect, but make an effort to make them feel welcome!

And finally, consider giving the special needs parents at your church a break. When an extra childcare worker is needed, don’t immediately run to one of the special needs parents. Exhaust your other options, first. Not all, but many special needs parents get very little breaks. Many of their children require extra physical work and extra attention. Often a child with special needs cannot ever be left alone, or requires medicine, or medical regimens, or is not potty trained, and more. This can be exhausting. Just be aware of that. In addition, statistically, children with special needs typically have more medical issues and illnesses, so their parents have to miss church more often than others. When they do get to be there, it would be great to let them talk with other adults and learn and rest. Some people have other opinions of course, but this is my opinion from what I’ve observed as being a Pastor’s wife and being a special needs parent, myself.

3. DON’T TAKE IT PERSONAL.

Let me explain. Not always, but more often than not, the special needs parent spends a lot of extra time on the phone with insurance companies and doctors, extra time in specialist’s offices, extra time researching and reading up on issues that their child is facing, etc.  And that is on top of “regular” life. I have found it more challenging to be a good friend/family member since becoming a parent of a child with special needs. I want to be better, but sometimes I just can’t! So please, please, do not take it personally when your friend who has a child with special needs doesn’t return your text or phone call. She loves you; she really does. But she really needs your grace and understanding.  Don’t give up on her. Keep texting and calling! I have some amazing friends who check in on me and send texts, or just tell me that they’re praying for me, even when I have nothing to give in return. What a beautiful picture of unconditional love.

4. SOMETIMES, THE FEWER THE WORDS, THE BETTER.

Let your friend vent, acknowledge her struggles, and just LISTEN. I know it’s tempting to talk about that time your Lucy got her adenoids out, but I’d encourage you to just listen instead. You see, what we go through as parents of children with special needs, can be unimaginable. At least it was for me! Eden had colon surgery at 1 week old, open heart surgery at 3 months old, spent 4 months in the hospital…and many more scary events along the way. I know you’re trying to empathize, but it truly is just best to listen, hug, and maybe sometimes even cry with your friend.

5. LOVE HER CHILD(REN) WITH SPECIAL NEEDS.

Get to know her child with special needs. Learn what makes that child “click”. Learn the child’s likes and dislikes. Learn what calms the child down; what makes the child happy. Learn about the child’s diagnosis and ailments. I can’t tell you how it warms my heart to see people love my child like I do. I have an amazing friend who looks for opportunities to love on my child and give 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 of six enters church, someone’s house, or anywhere else where we know people, do you know what 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 when that child has siblings, you can only imagine how hard it must be on them sometimes. 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, and asking about their lives and just loving them. But I don’t think this is something that most other people think about! Yes, you can love your friend who has a child with special needs, by loving their “typical” children too!

7. SPARE THE PARENTING ADVICE, UNLESS SHE ASKS.

In the Down Syndrome community we have a saying, “more alike than different”, meaning that our kiddos are more alike other children than they are different from them! And while that is completely true, the fact remains that they are still, different.

Eden has Down Syndrome (Trisomy 21). This means that she has an extra chromosome in every single cell in her entire body. It affects everything. With our older three girls, I never had to think about working hard to teach them how to eat, or take steps, or jump off of two feet. I guided them in those, but it was more of a natural flow of development for them. Whereas for Eden, all of those development markers took A LOT of hard work, A LOT of therapy, and occurred at a later age than with our typically developing children. Additionally, Eden has faced multiple major medical issues and complications, and to this day, deals with some colon issues. Nobody can possibly understand the complexity of what we’ve been through with Eden’s colon, and there is no simple fix. I have received numerous messages about some pill or powder that somebody is trying to sell me to fix my child. This is not helpful, and it’s honestly quite exhausting. I tell you all of this to say, that in complicated, post surgery, delicate, medical issues, I’d think twice before offering some advice. This goes for behavioral issues as well; many children with special needs have brains that are wired differently, and different approaches must be taken.

8. DON’T GENERALIZE ALL CHILDREN WHO HAVE THE SAME DIAGNOSIS.

No, people with Down Syndrome are NOT happy little angels all of the time. Just spend one day in our house and you’ll see! People with Down Syndrome are real people with real emotions. They have likes and dislikes, they get sad, angry, frustrated, and hurt. The Down Syndrome community is as diverse as the rest of us! They have strengths and weaknesses, and varying abilities. You cannot get an idea of what Down Syndrome is like just from meeting one person with it. They are all so different! So please, treat each person with a special need as a unique PERSON, not as the pre-conceived idea you have about their diagnosis.

9. INCLUDE HER.

Yep, 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 even if she doesn’t go, at least she’ll know that she’s loved.

10. DON’T WALK ON EGG SHELLS.

After reading this long list of what to do and what not to do, you may feel discouraged, but don’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 role of being our friend or loved one.

Here’s the thing. We absolutely adore our children. It is our privilege and honor to love them, care for them, and raise them. But we do need the support of our schools, our churches, our communities, our family, and our friends. We can’t do this without you!

Sara is a wife and a mom of four daughters. She enjoys being a part-time fitness instructor, reading, writing, hiking, going on dates with her husband, and just spending time with her family doing anything. She serves with her husband at Providence Baptist Church near Nashville, TN, where he is the Lead Pastor.

6 Comments on 10 Ways You Can Love Your Friend Who Has a Child with Special Needs

  1. Loved this post. Such good tips for those of us who want to know the right things to do and say, but just don’t.

  2. As a dad of 3 kids, 2 of which have Down Syndrome (and the youngest also has autism), I loved every point in this post. I added 2 more things to the list from my experience..,

    11. Some of our kids are runners (elopers). If you see a mischievous little one running away from exhausted, embarrassed parents, please get in the child’s way. Grab their hand or block them somehow. Touching them is ok. It’s better than them running into a dangerous situation (street, body of water, etc…)
    12. Don’t assume that the parent wants to talk about their child’s disability or diagnosis. We’re glad your uncle has a great life and has Down Syndrome. But, just as my kids aren’t “Downs Kids,” I am not a Downs Dad. Their disability or diagnosis doesn’t define us either.

  3. My special needs child is 16 and has BI Polar disorder. Your advice goes well with parents of all types of needs. Especially, the being there even when we cannot! Therapy appointments, constant research, and the day to day can feel like the weight of the world and it’s so hard to comprehend unless you are living it. Thank you, for your words, it’s nice to know we are not alone in our struggles.

  4. Wonderful! I’m seeing your post shared on other pages. Helping so many! 💕 I was a journalist before I was a special needs mom. May I point out that your article has a significant typo in the last sentence? Thought you’d want to know. It should be “role” instead of “roll.” I mention it only because the typo distracts from your powerful ending. You have a gift; please keep sharing your experiences with the rest of us! Blessings!! 😊

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