Seven Tips for Interacting with Special Needs Kids (and Their Families)

Being the parents of a child with special needs has been one of the greatest privileges of our lives. Our special needs girl (who has spina bifida) is full of spunk and joy. We know God has created her with a purpose and it's been fun to see her already being used to minister to the people she encounters.

It's also given us a lot of stories, mostly considered humorous by us, related to how people have responded to Butterfly who, unlike some special needs kids, can't often hide her disability, whether it's because she is using a walker, canes or a wheelchair, or crawling on all fours. In sharing some of these moments, I thought it might be fun to frame these stories as a guide for people who'd like some insight on how to interact with a person who is differently abled (or their parents).

If you are going to offer medical advice, do know what you are talking about or soften your "advice" by asking questions to see if you are on the right track.
I was once sent a long e-mail by a well-meaning friend who was eager to inform still-pregnant-with-Butterfly me that all that I needed to do to "fix" Butterfly was to take her to a good chiropractor after she was born. I don't think this person had any idea at all about what spina bifida is. Another acquaintance, also by e-mail, promised that Butterfly's life would be turned around, if I would only purchase the high-priced magic juice she was selling. Even better I could become a distributor under her. I probably don't need to explain how we felt about this.

Pray with understanding.
Prayer is always good and please pray for us, but please don't make our child feel like she is sick, because, praise God, she isn't. Once when Butterfly was a toddler, we were stopped in a McDonalds by a concerned family asking if they could pray for Butterfly. We agreed and they prayed sincerely that God would "heal her" and we were grateful, yet it felt odd because we know Butterfly isn't sick. Now that she is older, people have offered to pray for her healing or pray for her to "get better" and privately she says to us, mildly irritated, "What were they talking about? I'm not sick." I just want to be careful with my girl's heart and her trust in God. What if He chooses not to heal her in this life; chooses to be glorified in her life as she lives abundantly for him WITH spina bifida? Privately, I have prayed thousands of times for her to be restored, to be "healed." I know that hundreds of God's children have prayed the same. At the same time, our faith will not be shaken by God's answer. A good rule of thumb here is to just ask the person or parents, "Is there any way I can pray for you and your family?"

No pity needed or wanted.
We have been overwhelmed by the kindness of people: babysitting, hand-me-down clothes, meals after hospital stays and on and on. So many people have sensed our need or just wished to minister to us and we have been truly blessed. I've even had a few friends cry with me over our sorrows. All of that is compassion. But please don't pity us. Please don't look at my child with sad eyes, shake your head and say for all to hear, including her, "Poor baby." You must not know her. She loves life, makes friends wherever she goes and has even recently said "It's more fun not being able to walk." Perhaps she's right. How can we, who haven't lived her life, argue? Once a man stopped the kids and me in the library and regaled me with how sorry he was for Butterfly and insisted that I take $3 to buy my kids ice cream cones. He intentions were very sweet, but I was glad Butterfly was too young to realize that she'd just been given a hand-out, out of pity.

Don't limit them.
We love to hear about adults with spina bifida who have achieved great things. But please don't tell us stories about how you know someone with spina bifida who was able to live in a group home or get a job as a Walmart greeter, as if we are to take comfort in that. Granted, there is nothing wrong with living in a group home or working at Walmart in any capacity, but to suggest that our daughter doesn't have the full gamut of choices for where she lives and the kind of work she will do really does hurt.

Ask questions.
We love most questions. Questions like, "Do you mind my asking why you (your daughter) uses a wheelchair?" are awesome. However, "What's wrong with you (her)?" not so much. We get that one a lot. And for the record, nothing is wrong with her. She is the way God created her. We've heard of a few plucky kids with SB who have answered that one themselves with, "Nothing's wrong with me, what's wrong with you?" I kind of love that, but I'm still glad Butterfly hasn't responded to anyone that way... yet.

Speak, don't stare.
We love meeting new people, so if you or your kids have questions, just talk to us. Butterfly can't stand to be stared at, but lots of people, kids especially, stare at her... for a LONG time. We are encouraging Butterfly to flash big friendly smiles at kids who stare at her and, when it is appropriate, to go up to them and break the ice. She's had some awesome experiences doing just that; even so, sometimes she just wishes the staring would stop. If you notice your child staring, perhaps you could bring him or her over to meet Butterfly. We realize they're just curious and they'll probably really like Butterfly, and maybe us too. Most kids do.

After reflecting on this particular tip, I want to add that a far worse fate for Butterfly would be to have people vigorously working to AVOID looking at her. I think that sometimes happens as special needs kids become special needs adults. It is ALWAYS lovely to meet someone's eyes (any one's eyes, regardless of their abilities) and smile, perhaps say hello, even if they can't or won't respond in kind, and then go on about your business.

Don't sweat it.
Most importantly, just be yourselves. Few of the stories I've shared have caused us any more than a moment of discomfort.  Ultimately, if worrying about doing or saying the right (or wrong) thing will keep you from getting to know us and deprive us of getting to know you, don't sweat it. Just jump in there and say and do what comes naturally. We think we'll like you too! We usually do!

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.  Jeremiah 29:11

Creative Kid

Today, Lizard created this sculpture from some homemade peppermint-scented play-doh given to us by friends as a Christmas present. She seems to have the artistic gift I've always wished I had.

I want to do it AGAIN! (overcoming at Great Wolf Lodge)

I love water parks, always have. I remember when they were building the first true water park in Cincinnati. I was 15 and, through a family connection, I got a job selling season passes for the not-yet-opened The Beach water park. In the middle of a typically cold Midwest winter, as Christmas shoppers bustled about in the mall, I and my coworkers wore shorts and t-shirts while tossing around beach balls to draw shoppers to consider choosing water park season passes as Christmas presents.

I admit that those really, really tall slides that boast what seem to be nearly vertical drops never have even been tried by me. I prefer my water park thrills to have twists and turns and bounces and bumps, rather than hurtling my body toward frighteningly small pools of water.

So it was with high hopes that we registered for homeschool days at Great Wolf Lodge, an indoor water park in Williamsburg, VA, the first week of December 2010. Our oldest enjoyed every feature of the park. Our middle daughter was pleased to run around with her friends with some level of freedom, but was reticent to try anything more than the medium slides. The youngest at seven, Butterfly, wore her leg braces and bear crawled her way around the park, making a circuit from the wave pool to the baby pool with baby slides to the hot tub and back, under the vigilant watch of one or both parents.

While we considered that first visit to Great Wolf Lodge a success, it amounted to a droplet of fun compared to the great splashes of delight that were in store for us this December! We arrived on Wednesday and were exceptionally pleased with our suite with living room, kitchenette, two separate bedrooms and two full baths. We wasted no time getting ready for the water park.

Immediately, Lizard, at 11, and with a heightened spirit of adventure, began testing her new-found bravery, joining her older brother on the biggest slides. And she loved them!

In turn, Butterfly, now eight, decided she was ready to try the medium slides. These can be found at nearly every water park. They extend from a large playground-like structure, featuring sprayers and buckets of water to dump on unsuspecting passers-by at every bend in the zig-zagging steps.

Feeling protective, Steady Man and I both escorted Butterfly through the maze of steps and rope bridges to the beginning of the first slide. I explained to the lifeguard on duty that while Butterfly can't walk (perhaps obvious to him by the way she had ascended the structure on all fours), she can sit up well. The young man considered for a moment and said, "Put her on!" For a flash, I was annoyed that this youngster, with so little life experience, was so ready to see my daughter go flying down that deadly slide, forgetting that we were the ones pleading with him for her to be allowed that very pleasure.

Having checked myself, I listened as the young man proposed a plan: I was to go down first, in order to be there to catch Butterfly at the end of the slide. Steady Man would go last, so that he could assist her onto the slide. Great! Here I go! Whoa! This is fast! This is twisty! I suddenly had visions of Butterfly being slammed this way and that, unable to hold herself up while water splashed in her face making her feel as if she would drown. Wait! Stop! Don't send her! My mind screamed. If only I had a cell phone, I could call Steady Man and tell him it's too dangerous, but cell phones and bathing suits on water slides just don't mix. My only recourse was prayer. I leaped off the slide and began praying for Butterfly's safety. Praying that she would be able to hold herself up. Praying that she would have fun.

It seemed like an eternity before I finally saw her coming around the last bend in the slide. Was that astonished look on her face from fear or was she merely anticipating hitting the small splash pool at the end of the slide? I couldn't tell. Then wham, she exploded into the pool of water in front of me. I scooped her up in my arms, looked into her eyes and asked what I was desperate to know, "Did you like it?" Her elated reply: "I LOVED it! It was so much fun! I want to do it AGAIN!" My heart cried, "Thank you Jesus!"

We lost count how many times Butterfly went down the two medium slides, lovingly referred to as "the green one" and "the orange one" that first day at the park. Steady Man and I also took turns going down "the big slides" with Historian and Lizard.

The next day, our only full day at Great Wolf Lodge, Butterfly decided she wanted to try the three big slides for which she met the height requirement. These are the kind of slides that require you to ascend stairs to the roof of the building in order to ride them. The first task was to find a way that Butterfly could sit on the tandem inner tube with Steady Man. Compared to Butterfly's tiny frame, that hole was enormous. That coupled with Butterfly's diminished ability, due to low muscle tone, to keep her frame from folding in half, made Butterfly at risk for disappearing through the hole in the inner tube.

The solution was for Butterfly to sit not so much in "the hole" of the inner tube, but rather on the tube portion that was between the front rider's seat and the back rider's seat. Sitting there, with Steady Man's legs supporting her seemed to work, although I couldn't help feeling the whole plan was a bit reckless. At the same time, we have never wanted to tell Butterfly that she can't do things because she has spina bifida. If she wanted to do it, we were ready to take the responsibility for any mishap.

Steady Man climbed the stairs to talk with the lifeguard-on-duty. He was referred to the lifeguard supervisor and, after discussing Butterfly's situation, she approved Butterfly to ride all slides for which she was tall enough. The only caveat, of course, was that we had to get her to the top of all those steps.

I can take credit for carrying Butterfly up all those steps perhaps three times. A couple of guy friends also took turns carrying her up those numerous flights. And Butterfly climbed many many stairs on all fours on her own. But Steady Man... what a dad! Between the medium and tall slides, he must have carried his sweet 45-pound angel up more than 100 flights of stairs. He was hurting, but he wouldn't let it stop his daughter from fully participating in the pleasures of the day. I was in awe of him.

And she loved those slides too! We all did!

These joys, combined with spending important time with special friends, made this trip to Great Wolf Lodge, a highlight of 2011 for the Smith Family.

I can do all things through Him who gives me strength. Philippians 4:13

A Tale of Four Toilet Paper Tubes

We have been enjoying getting to know some elderly women (and a few men) at a nearby assisted living facility with a homeschool group called Grandparents Club. Twice a month, the kids and I meet other moms and kids at Sunrise, to sing and do crafts with the residents there. It has been a truly educational and emotionally-charged experience as we've gotten to know a former geologist/author, dog breeder, housewife, farm girl, and many more colorful and treasured characters.

Yesterday, we started the day full of anticipation as it was Grandparents Day again. We were not in charge of leading that day, but we had been asked to wear our name tags and bring empty toilet paper tubes for the unannounced craft. Dogwood Cottage was our destination where all of the residents have memory loss in common, so we knew this day would be more of a challenge.

I was a bit surprised as we walked in just a hair past the appointed time of 10 a.m. to find no other homeschool moms or kids at the residence; we had never been the first to arrive. The activities director immediately caught my eye and a quizzical expression flashed across her face. "We're with Grandparents Club," I tentatively offered.

With that, her face lit up. "Grandparents Club! We're so glad you are here!" She asked how we planned to entertain the residents. I explained that someone would be coming to lead the residents in a craft and perhaps singing. We agreed that while we were waiting for the other members of Grandparents Club (especially the mom leading the activities), the dining room needed some rearranging in order to accommodate the craft activities.

While she and the staff tackled this task, as well as the slow and careful process of escorting each resident to the dining area, we began making connections with the seniors, while occasionally glancing toward the door to see if the others were arriving.

By 10:15, we had become downright nervous. About 14 seniors had been moved to the dining room and soon, a program of singing and crafts would be demanded of us, and all we had was four toilet paper tubes and no plan! The comedy of the situation was far from lost on us. I told the teenage friend we had brought along that since she was holding the toilet paper tubes, she would be responsible for "making magic" with them. She promptly tossed them into Butterfly's lap.

After making a few quick phone calls on my cell phone, I discovered that we had come on the wrong day. Perhaps that has already occurred to my readers, but since the activities director had so warmly and eagerly welcomed us, as if she expected us, it hadn't occurred to me. It was only later that I recalled that momentary quizzical look on her face as we first entered the facility.

I dreaded breaking the news to her, but it had to be done. I approached her and asked if she had actually been expecting us that day. She replied that she hadn't but assumed someone forgot to tell her. I went on to explain that we had come on the wrong day and had not ourselves planned to lead any activities at all.

Without missing a beat, she exclaimed that this was not a problem at all. She had a closet full of crafts and that just our being there was an answer to a specific prayer. She went on to share that they were short on staff that day and, until we arrived, she didn't know how she was going to be able to engage all the residents that morning. "They love kids, they love being talked to, just your being here means so much!"

So she pulled out coloring pages and markers, and we all colored together. I strolled the halls holding a weathered hand in my own. I prevented a confused lady from eating a marker and then helped her color the page she had chosen. We were told that we were "wonderful" and "sweet" by one dear lady who also emphatically proclaimed, "I love you!" The kids rolled a ball across a table for 30 minutes or more with a woman who had once been an athlete. She could barely walk, but she wasn't about to let that ball fall from the table.

Gray hair is a crown of splendor;
   it is attained in the way of righteousness.
Proverbs 16:31

Historian went to the piano and began playing every song he had ever memorized as he had not brought any music. I think he even improvised a few he hadn't memorized. Fortunately, we found a Christmas song book and he began playing pieces out of that. One woman who we had not been able to previously engage locked eyes with me as Historian began playing Silent Night, and we sang the words together.

Hugs and kisses, coloring and strolling, rolling and singing were all a part of this strange and wonderful day of Grandparents Club. We couldn't help but praise God as we reflected on our morning. God had used my mistake to answer a much needed prayer. We felt elated to be a blessing to such special, super-seasoned souls. In fact, we were the ones to truly receive the blessing.

Oh, and the toilet paper rolls never made it home with us. We don't know what happened to them. On this particular day, God didn't need those measly offerings to create a bounty of laughter, smiles and sparkling eyes.

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Romans 8:28