I will guarantee that many of you have said, overheard or seen sentiments like those pictured above. I know I did. I was one of those moms who had a perfect first child, and therefore thought I knew everything. I had no problem blaming the parents, blaming the doctors, blaming society for allowing “brats” who try to solve the problem by medicating them vs. discipline.
Then, I had to eat my own words.
I now find myself one of the first people to defend the child with the invisible disabilities. My second daughter was entirely different from my first. She was far more exuberant, and head strong. She had quirks about her that would make me question, from a very early age, if she suffered from some sort of disorder. I would find myself searching the internet, taking those “how to know if your child has _____” quizzes. My daughter was always the square peg in a world of round holes. Even within the scope of various disabilities, she didn’t quite fit the profile. I would think briefly that she must be fine, but then with each developmental milestone we would (or should) hit … I was searching again.
When she was just around two years old, we got our first diagnosis. “Speech Delayed”. We attended a few assessments, and had our sit down meeting to talk about her treatment plan. This was the first time someone referred to my daughter as disabled. It rocked me to my core. It doesn’t matter what the diagnosis is, hearing that your child is disabled … it takes your breath away. I cried the whole ride home. Someone actually put words to something I suspected all along. But, clearly, it wasn’t just a speech delay. Many of the behaviors she was exhibiting, it was assumed, would correct themselves as she became more verbal.
Her speech cleared up, but the quirks didn’t. In some respects, it got worse.
I remember, time and time again, telling people THERE IS SOMETHING WRONG WITH HER. I actually wanted to know what it was, so I could help her. Answers evaded me. It was her second grade teacher that first mentioned autism, but my daughter didn’t fit that profile either. Our next diagnosis was a positive one, GIFTED.
I knew my daughter was exceptionally smart, which I think was part of what frustrated me about her behaviors. I couldn’t wrap my head around why someone SO smart, couldn’t see or correct her behaviors.
It would not come until 5th grade that we would get another diagnosis. ADHD. You know the “brat disease”, “excuse for parents who don’t want to discipline their children disease”, the “too lazy to parent their children disease”…. yeah, that one. We would work our way through figuring out medications and dosage. What I couldn’t be prepared for, was the response of others.
“She is just being a kid, she doesn’t need medication.”
“Have you tried changing her diet? I have read that _____ causes ADHD”
“You don’t have to give her medication. Mountain Dew or strong coffee will work just as well.”
“She is just head strong. You need to set firmer boundaries.”
They have no clue what it is like to live with a child that has ADHD. Let alone a GIFTED child, with ADHD. They live in a world, where their brains NEVER shut down. They are constantly on the go, on the move. They talk non stop, about everything, to the point of parental exhaustion. They are extreme about how they respond to everything. She is loud. She is intense. She is extreme. She is, exactly how God made her. And, she will happily tell you that.
When you talk to someone about your child being disabled, and they say “She doesn’t look disabled“…. it hurts. They do not know what it is like to get a letter home EVERY DAY about your child’s behavior, and the calls to the doctor that it may be time to increase her medication. Again. The same medication you were hoping to wean her off of in time, with the grand hope that you can help her learn to control her behavior.
It is devastating to hear members of your own family speak about her disability. The one who calls her a “zombie” when she is on her medication. And the one, who says they can’t handle her off her medication. When people who are her own blood won’t babysit her because she is “too much” for them. She will spend the rest of her life unaware of the number of times she was rejected by her own family members. A burden my heart bears, to spare her.
They also do not know what it is like to open your child’s planner at the end of the school year… to find a note taped in the back. In her handwriting you see the words “Read Every Day”. And, as any mom would, you open up the note to see these words written on a cheap valentines day class swap card….
“I know some people think you are weird,
But I think you are awesome.”
It is great to see that someone sees the AMAZING side of your child. It is heart wrenching to know that your child needed that affirmation so much, she would put it into her planner… making sure to read it every day. She needed to know someone other than her parents (and God) liked her. She was alone, lonely.
Everything changed when she started her medication. The notes stopped coming home. She started making friends. She was able to focus, and her behaviors stopped or at least were minimized. She has best friends now.
In the church, it is easy for us to know how to respond to the child with a visible disability. We not only see it, but we are prepared for (or at least expecting) that we are going to need to be more patient, more hands on, more helpful and more understanding. We would be more cautious about what we said to the parents. Those parents hear things like “He had a hard day today, but we got through it” or “He did so well today!”.
When you are a parent of a child with an invisible disability, you hear things like…. “Wow, that one… she’s a handful”, usually accompanied by a look of complete exasperation on their face. When well meaning people off up a litany of suggestions on how to raise this child, you feel defeated. You feel judged. You feel like you are failing as a parent.
We are now in the middle school years, and our daughter sits with us during Saturday night service. We do not give her medication on days when there is no school, we still hold out hope that she’ll learn the coping skills to live off medication one day. Sitting with her, un-medicated, at Saturday night service is the equivalent to sitting with a toddler.
She fidgets. She talks. She interrupts. She draws. She goes through the papers in the pew pockets. She touches people, gently. She asks a million questions. She hangs on you, pulls on you, sits on you. She sits up, she lays down.
She can’t help herself.
She also sings with all her might. She raises her hands to the Lord, as she praises. She smiles bigger, and has a twinkle in her eye … that melts your heart. She laughs with every muscle in her body. She is the embodiment of 1 Corinthians 13:4-7. She may ask a LOT of questions, but they are good questions. Pastor, despite her fidgeting… SHE HEARD EVERY WORD YOU SAID. With certainty, we will be discussing it later. You deposited that information into a vault, a bank she will pull from one day.
How does the church minister to people like me, to my daughter?
1) Recognize that unseen disorders are still REAL. These families need support too, they need help… they parent the child no one wants to babysit. When mom walks into the church late (again), looking like she just went through WWIII…. Smile at her, hug her, and connect to that child. The more you make the child feel welcome at the church, the easier it is for us to get them motivated to come.
2) Be mindful of the words you speak, and the assumptions you make. You have no idea how hard it is to parent these children, every day choosing which battles you are going to fight. While yes, there may be parents who abuse the system, most of us do not. We love our children. We are doing everything we can for them to be successful now & in their future. We need your words of encouragement. When people make comments like the one in the picture above, they have no clue WHO they are saying it to. I’ve heard it. It makes me cringe. I’m that parent you are calling lazy, and unwilling to discipline. You don’t even realize it.
3) When you see the parent trying to wrangle them in, understand that THIS child REQUIRES different techniques and parenting. We are not being harsh, we are holding firm boundaries. We are still teaching them, and we appreciate your willingness to teach them as well. We appreciate your patience, and that you see the best in our kids. Don’t let them get away with something, just because they have a disorder or disability. Just keep it in mind, as you choose how to handle it, that you are not dealing with an average kid. When in doubt, ask the parents.
I know there are times when my daughter will be a distraction, and you will look. I expect the look. I appreciate the smile.
For those of you reading this, who may have a child like mine sitting in your Sunday Service, there is HOPE.
When the pressure is removed from the parents, when they understand that you love their kids… imperfections, quirks, and all… there is an enormous release. We can engage in your message, without worry about what our kid is doing every second. And you set the tone for others, when you (especially as Pastors and Elders) say it is ok… the body will follow. Your smiles, become their smiles. Your acceptance, becomes their acceptance.
Use your knowledge of members in the body to connect us families together, but also with people in the body that have the skills. Tell us about that occupational therapist that can give us suggestions on getting through the service, or help train the Sunday School workers on how to deal with kids that have disabilities and disorders, particularly the invisible ones.
And, consider having some of the following:
GIVE THEM JOBS!!!! – Just because a child or teen has a disability or disorder, doesn’t mean they don’t have gifts and talents. Giving them a job as part of the service will allow them to plug in, feel important, and something to focus on. Many would love to be a greeter, pass out welcome packets, help pass out the offering baskets, etc. Even something as simple as having a few kids restock the pens and response cards in the pews between services, it can mean a lot. Be sure to speak with the parents first, to help identify the best area to serve.
Have a few copies of The Action Bible tucked sporadically under pews or available as the kids come in the door. They are easy to follow, and can help capture the child’s attention during the service. Mom and Dad will get to enjoy the message, and their child has something appropriate to keep them engaged.
Take a lesson from the Pros! Any restaurant that serves kids has special menus and packs of crayons for kids. Why? Because, they know that kids have a short attention span & patience is not one of their strong points. Children who are disabled will often find these same activities helpful, regardless of their age. Have something like, Worship Bulletins for Kids, available at the pews, in a basket near the door, or being distributed by greeters; they are cost effective and won’t take up much space. You can choose to provide crayons, or just let the kids use the pens/pencils already in the pews.
Even something as simple as stickers is HUGE for kids, it’s positive reinforcement & fun. The stickers can be kept at your Information Desk, and after service Mom, or Dad, can bring their child to pick up a sticker for sitting well through service. The parents can come up with a reward system for at home (certain # of stickers collected = reward). For many special needs kids, the sticker is enough. Parents will appreciate that it is not candy too! These Very Veggie Values stickers are perfect because they are fun, but also are learning tools.
The great news is that you can find these resources all in one location, http://www.FamilyChristian.com , they also have an entire section of books for Families with Special Needs Kids including: autism, add, adhd, overeating, fragile x, downs syndrome, and more.
These books not only are helpful to parents who have children that are special needs, but are great resources to children’s ministry leaders and church staff. When you take the time to make an investment to understanding these kids in your church… you minister to our hearts in ways you never will truly understand. There are times when you will treat our kids better, kinder and more lovingly than some of their own relatives. You matter in their lives.
Matthew 25:40 “Truly I tell you, whatever you did for one of the least of these, you did for me.”
Matthew 18:10 “See that you do not despise one of these little ones, for I say to you that their angels in heaven continually see the face of My Father who is in heaven.”
Mark 10:14 He said to them, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these.”