A recent report from the United States Department of Health and Human Services reports that 14 percent of all US children have special needs. The birth of a special needs child changes everything about the family dynamic, but many believers look back and say, “We would not change a thing because this entire journey has been a blessing in ways we could never have anticipated.” Meet a few of those amazing parents and extraordinary children!
By Kim Allen
I wait, anxiously, in the line of cars, hoping to catch a glimpse of a tall, bespectacled ninth grader, bent over with the weight of a battered backpack. My heart always races a bit until I see him and he sees me. There have been two times that he was not just as anxiously waiting for me, standing solemnly at the main school entrance. One of those times, he had been assaulted badly enough to have the perpetrator expelled immediately. The second, he had his iPhone and iTouch stolen while he was performing PT with his JROTC unit.
There he is. I catch his eye and wave, trying not to be too embarrassing. He lumbers over to the SUV, hoping that I have brought him a treat, milkshake or soda, maybe even fries. He’s hungry in the afternoons.
“School steals my soul,” he quips, straight-faced.
“But apparently, not your appetite,” I quip back. He doesn’t always get my hilarious comebacks. There is a reason for this, and his quirky humor, and his tendency to become a target.
He has autism.
As much as this one word does not define my son, it definitely shapes who he is. The Asperger’s affects his mind, his gut, and his social cues. When he was diagnosed, someone asked me, “Don’t you feel relief knowing what was going on with him?”
No, not so much.
It just felt like another label. There had been a few as I homeschooled him, trying to figure out why reading, math, and focus were huge obstacles. My daughter had flown through all of her milestones, advancing and excelling. Some people told me that boys were just slower, no big deal. I tried to be laid back, whatever that means. Mostly, I tried to lovingly challenge him to keep going. I read books. I had him do some exercises with a reading specialist and a former principal. But it wasn’t until, when he was 10 years of age, I convinced his general practitioner that I needed him to refer me to a place where he could have extensive testing to figure this thing out. Even the doctor said, “He doesn’t seem hyper to me” and didn’t really get it. It’s okay. I don’t hold this against anyone. It just made me realize that I was going to have to fight for him from now on.
Since then, we have learned a lot. And my son has come a long way. He is now enrolled in a “real” high school. They have the resources he needs to become self-sustaining, teaching him to embrace a career. There is a great team there, and they work closely with us to ensure his education and security. He is on the honor roll, and shoots for the rifle team in JROTC.
But he has special needs.
Don’t change the schedule spontaneously. Don’t serve him mushy vegetables. Speak to him while looking into his eyes to ensure that he understands. Speak patiently, no yelling. Do not, under any circumstances, touch any of his Lego extravaganzas that he has set up in his room. Otherwise, everyone will suffer the consequences. He becomes sullen and unresponsive, and sometimes catatonic, if it’s really bad. Like vacation.
There are wonderful things about him as well. He is very tenderhearted and loves people. He is affectionate, and is my cuddler when I feel crappy. He is honest to a fault, and takes initiative to do his chores without having to be told.
The thing about all of this that makes me laugh is this—the rest of the family is not that much different.
They all have special needs.
My daughter? Suggest and don’t demand. Let her keep her room like she wants. No apples, and no vegetables in the chicken casserole. Listen; don’t interrupt, it’s rude.
My husband? Timing is important. Let him eat first before addressing a controversial issue. Assume the best about him. He needs trust and respect. Be on his team. Make sure he eats his meals regularly or it will get ugly.
The dogs? Well, they are easy. Make sure they go outside at regular intervals and have food and fresh water daily. If so, love will abound.
There are rules for all of us about how to treat one another. If we take the time to get to know one another, then we find out what is important—how to love one another well. When we look at Romans 14, we see that Paul thought the same thing. How we treat each other in Christ says a lot about how we treasure the relationships God has placed in our lives. When we look at one another, we should see someone who is unique, beautiful, gifted, and yes, has special needs. We can ask the Holy Spirit to give us those eyes to see how to love unique people uniquely, in the way God made them to receive love. This takes patience, understanding, compassion, and the love of Christ flowing freely through us.
My husband, the priest, likes to say that everybody knows John 3:16. This is good. It gets us to the cross, our salvation. But then we need to live out 1 John 3:16, “By this we know love, that He laid down His life for us, and we ought to lay down our lives for the brothers.”
As I pull away from the school’s curb, I look over at my beautiful boy, marvelously made, handcrafted by the most Loving One of all. He looks over at me and says, “What? Do I have something in my teeth?”
I say, “No, you have something in that big heart of yours that I love.”
He grins. “Does that mean we can get some natural-cut fries at Wendy’s?”
Ah, yes. Feed him, clothe him, love him.
Most of all, love.
By Brent Lape
“God, I pray that you can bless us with a healthy child. I pray that somehow you can bless Lily and not let her be born with any special needs or problems.”
A year ago I said this prayer before the birth of our beautiful daughter, Lily. I remember thinking, “Maybe I should be specific so God knows what I mean by healthy.” I had a picture in my mind, like most parents, of what our perfect child would be. She would be beautiful like her mother. She would kick some butt in softball and volleyball and make the varsity team in high school. She would go on to Mississippi State and get married and bless us with grandkids.
God wasn’t listening to my prayer that day though. At least, that’s how I felt when we were confronted with the news that Lily possessed an extra 21st chromosome. What did I do that was so wrong to deserve this? Why us? Why my little girl?
Fast forward to today, and I am starting to see exactly how blessed my wife, Kristin, and I are for this unanswered prayer. God was listening. Unfortunately, I was too busy telling God what I wanted, instead of listening to His response. It was found inside the eyes of my sweet baby girl that Monday morning—Lily’s eyes looking straight into mine simply asking me to love her and accept her.
As much as I was praying for God to change Lily, He instead decided to use Lily to change me. When I look at Lily, I see my beautiful, always smiling, baby girl. Yes, Lily has Down syndrome, but that does not define who she is.
Lily may only be a year old, but she has already taught me more about life and love than I could have ever imagined. Kristin and I used to be the worst at trying to plan everything we could in our lives. As my mother-in-law likes to tell us, “If you want to make God laugh, than tell him your plans.” I could worry myself to death thinking about all of the “what-ifs” in regards to Lily’s future. Instead, we try to focus all of our energy on doing what we can now to ensure Lily will have the best future possible, without any limitations.
Lily has also taught us how to embrace the small things in life. Every single milestone, no matter how small, we celebrate! I still remember the first time Lily rolled from her back to her stomach. We took photos and video, posted it to Facebook and texted family and friends. We also have learned to live our lives a lot slower. I am in no rush at all in waiting for Lily to achieve her next milestone. Our love for Lily is not measured in how quickly she achieves.
I am so amazed to look back at this past year and see how much Lily has already accomplished. After only a few weeks at the Little Light House, she has already started waving bye and even blew kisses to the ladies at her daycare. When Carrie Cox, executive director at the Little Light House, asked for our goals for Lily, my first goal before walking and talking, was for Lily to be able to reach out and grab her birthday cake and eat it on her own. Follow us on Facebook (facebook.com/runnningforlily) to see if Lily was able to accomplish this first goal. We will be sure to include several messy pictures!
It’s still amazing to think that it was a year ago that I asked God “Why me?” Today, I wonder what I did to deserve such an incredible blessing like Lilybean. Kristin and I would love for you to join the Runnning for Lily team on October 12th for the Buddy Walk 5K (benefitting the Central MS Down Syndrome Society) and on November 2nd at the Laps for Little Ones 5K (benefiting the Little Light House of Central MS). For more information, visitwww.runnningforlily.com.
Special from the Inside Out
By Barbara Hamilton
Being the parent of a “special needs” child brings with it situations and challenges most parents never dream of, much less experience. What is considered “normal” for most children is much of the time so far removed and impossible for the child with special needs that we often underestimate him. Even worse, we underestimate God’s working in and through him. But there are wonderful moments of sunshine, thanksgiving, and victory that come bursting through, often when we least expect them.
Our “special” daughter, Lindsay, loves to talk to the neighbors who live behind us. She watches out the window, waiting for them to come outside, and when they do, she hurries to the fence. We have good neighbors who, when they hear her call out to them, stop what they’re doing and join her there.
Several months ago, I walked outside and heard her reading to them. Thinking it was probably something about Disney World, her most favorite place on the planet, I suggested she read to them another time; they were busy, and she shouldn’t interrupt them. She replied, “Miss Laura’s nephew died, Mom, and I’m reading the Bible to comfort them.” I was momentarily speechless. I thought, Lord, my daughter really IS special! Thank you for the heart you’ve given her, for her innocence that expresses itself in an openness and willingness to reach out to others. And forgive me, Lord, for being so wrapped up in my own world that I am unaware of what is happening in the world of those around me.
I don’t know which verses she read, but that isn’t important. What’s important is that she was reaching out to someone with a need—a special need. Isn’t that what we all should be doing? All of us “normal” people?
It doesn’t take a brilliant mind or a perfect body, just a loving heart, and God has given that gift to so many whom society considers, imperfect, deficient—broken. Instead of labels like “LD,” ADD, ADHD, OCD, ODD, and others, why not choose those of “loving,” “encouraging,” “forgiving,” “joyful”? Why must we focus on what “special needs” individuals are not, instead of what they are? Our daughter has worn so many of those psychological labels through the years, yet not a one of them defines who she really is.
I once thought God had given Lindsay to us so we could minister to her, teach, and love her in a manner that would be pleasing to Him. It made me feel good to think that God knew we’d love and take care of her. I saw it as a sign of His trust. But over time, my feeling evolved into a certainty that it was just the opposite, for He knew we needed her. We needed her silly jokes, her contagious laughter, her daily encouragement, her endless hugs and kisses. We needed her joy, and most of all—we needed her love.
Do we have struggles? Certainly. Challenges? Always. Behavior issues? Most definitely! But I’ve learned that Lindsay can be all God created her to be, not in spite of her challenges, but because of them. That’s why each hard-fought accomplishment is such a sweet success. She is a part of God’s Perfect Plan, and she is no more imperfect than any of the rest of us. She, along with all “special needs” children and adults, deserve as much a chance as anyone else to live a happy, purposeful life. That has always been our goal for her.
I’ve also found the more you learn about your child’s disability, the more you learn about yourself. Do you have patience to deal with the most trying situations? Can you accept your child’s disability? Can you encourage him to reach his potential whatever it may be? And, do you have faith that God really is in control?
Someone once asked Jesus what the greatest commandment was. His answer was to love God and to love one’s fellow man. Judging from my daughter’s conversation at the fence that day, she fully understands those words. What more can I ask of my special child?