By Linda Gilden
“G’wace, G’wace. You OK. Calm down.” Elizabeth, age 2, ran to her 4-year-old sister. Touching Grace’s arm, Elizabeth said, “G’wace, bweathe. Bweathe.” Grace was in the midst of a meltdown. But at Elizabeth’s words, she began to calm down. “Here, G’wace, here’s your blankie.”
You see, Grace has autism and even though Elizabeth is only 2, she is learning to help her sister practice the coping techniques that her therapists have taught her.
Special needs is a huge umbrella under which an array of diagnoses reside. These include learning disabilities, cognitive impairment, developmental delays, autism, Down syndrome, and so much more. According to the February 2015 U.S. Census Bureau, Grace and Elizabeth’s family is one among many: 5.2 percent of children ages 5-17 have some level of disability. With 19 percent of the population dealing with special needs in their families, the need for understanding is great.
Because Elizabeth is a younger sibling, she doesn’t know what it is like not to have to help Grace calm down at times or sit through her therapy sessions. But when the special needs child is younger and older siblings suddenly find their schedules altered, the new normal can seem overwhelming.
Lynda T. Young, author of Hope for Families of Children on the Autism Spectrum and grandmother of a special needs child, said, “Many siblings feel left out or invisible.”
“If other children are involved, you must make them feel special too,” added Barry Bryson, father of 28-year-old Richie who has a degenerative disease called Perlizaeus-Merzbacher. “I have witnessed a thousand instances where people go to Richie first, failing to even recognize his handsome, amicable brother standing next to him. You have to help your other children understand the dynamics.”
Jane Bateman said, “I always felt conflicted, trying to meet the needs of my special needs child, Daniel, as well as be Mom to our other two children. But our older children, grown now with children of their own, have extremely tender hearts and unusual discernment toward others. I am incredibly grateful to God that he chooses not only the parents of special needs children but the siblings as well.”
For grandparents it is a challenge not only to accept the special needs of their grandchildren but also to watch their own children deal with extra responsibilities.
But grandparents can learn how to care for special needs grandchildren as well. Sue Badeau, mother of 22 children, many of whom have special needs, said, “Many relatives learned how to be more creative in terms of thinking, How do I take my granddaughter out in public knowing she may embarrass me with her words or behavior? How do I overcome my own fear or pride in order to spend time with her? Once they learned how to do that, they were always enriched.”
All mothers have busy schedules. Mothers of special needs children even more. Those on the outside looking in cannot imagine how much energy, scheduling, stamina, faith, and more it takes to care for a special needs child. Many need around-the-clock care, so the 24/7, on-call system continues, sometimes for life. Parents with special needs children sleep little, have few friends outside other special needs parents, and are drained financially. But few complain.
A few special challenges include:
1. Going out. Evelyn Mann, mother of a 10-year-old son who has Thanatophoric Dysplasia Dwarfism and is one of a handful survivors worldwide, said, “When we go out we take a diaper bag, but it doesn’t end there. We have to take a G-Tube, suction machine, nebulizer, saline, and an Ambu bag, to name a few things. Overnight trips are even harder.”
2. Food. Several families agree that finding something their special needs children will eat is difficult. The children will not try new things. Eating out is almost impossible.
3. Church. Tim Suddeth, father to 18-year-old Madison, said, “We go in for the music, which is loud and fast and Madison won’t disturb anyone. After the music we go out in the lobby and sit where we can watch the preaching on the screen.”
4. Lack of spontaneity. Even stopping for drive-through ice cream presents its own challenges. And because many special needs children don’t like change, preparation for an outing can start days before the trip.
5. Family gatherings. Even special family events are a challenge unless everyone there has a little knowledge of special needs.
Sometimes finding joy in the midst of additional physical work, sleepless nights, and stressed budgets is hard. But parents of special needs children seem to find joy in little things others don’t even see.
Cathy Carden, mother of 10-year-old Marina, who has Down syndrome, counts her blessings. “While society would deem the birth of a special needs child to be a judgment or a curse, it took me no time to discover the opposite is true. I feel so special to be trusted with one of Heaven’s greatest treasures. My firstborn died at age 6 of leukemia (she also had Down syndrome). Less than a year later I found my Marina and fell in love with her. Marina is not a replacement model. She is an extension of the love I had for my firstborn who left too soon.”
Most special needs parents would agree that one of the greatest joys is experiencing the world through the eyes of their special needs children. They revel in the simplest things—a flower, a drop of water on a leaf, watching an ant carry food back to its hill. Every accomplishment of a special needs child is cause for celebration. Smiling, learning a letter, making a new sound, learning a new word, or recognizing Grandma when she enters the room—all elicit celebration and applause and often a prayer of thanksgiving.
Parenting a special needs child will either make you mad at God or draw you closer to him. Just like parenting any child, there will be good days and bad days. Barry Bryson says to new parents of special needs children, “Get over hating God, the shock and sadness, and feeling sorry for yourself and your special needs child as fast as you can. Don’t waste time trying to understand it. Focus your time, energy, and resources on getting this child the best medical care and figuring out how to give them the greatest life experiences ever. Be strong in faith.”
“I often think the diagnosis of special needs is given to the wrong social spectrum,” said Cathy Carden. “I am the one with special needs . . . Marina just gets it. Sometimes I want answers . . . she is happy just to have Jesus. Another fine lesson I can learn from my beautiful gift.”
Lawton, 21 years old, has many family members who help him. “Our family has learned unconditional love in ways we would have never known because of Lawton,” his mom, Kitty, said. “I see myself as a child of God with loads of special needs, and he loves me just the way I am.”
“There is a saying that goes, ‘the Lord does not put on you more than you can handle.’ I do not agree with that. The care of a special needs child is more than I can handle. I have to seek the Lord to give me strength and patience on a daily basis,” said Denise Bryson.
Well-meaning friends often say to parents at the birth of a special needs child, “God only gives special needs children to special parents.”
Barry Bryson disagrees with that. “I was not special. Far from it. God gave us Richie, and if I’m special now it’s because of this gift and God’s grace.”
Starr Ayers, the parent of a Down syndrome child, agreed. “Parents of special needs children soon realize they simply aren’t special enough to overcome the challenges that lay ahead. No one, no one, is equipped to handle the pressures of rearing a special needs child (or any child) in and of themselves. The truth is, special needs children aren’t given to special parents. God gives us special needs children—blesses us with their presence—so that we will come to know him, experience his ways, and exalt the Giver of all good and perfect gifts. The tragedy comes when we miss his point.”
Linda Gilden is an author, speaker, editor, and writing coach living in South Carolina.