Extraordinary Kids
In 1998, the book, Extraordinary Kids; nurturing and championing your child with special needs, received the Gold Medallion Book Award--the highest honor in Christian publishing.
In 1996, Cheri Fuller and I teamed up to write the book, Extraordinary Kids. It was published in 1997 by Focus on the Family publishing. It was a much needed resource--then and today-- and is still hailed as one of the best resources for parents of children with special needs. Writing the book was a labor of love for me since I am the mother of a son with special needs. I am thrilled that this book has helped so many people, including teachers, grandparents, pastors, physicians, therapists and more. It continues to influence all those who read it.
Introduction
Twenty years ago, my son, Jay, was born with Down syndrome. Though I didn't know it at the time, God was introducing me to one of the most marvelous journeys of my life. I remember the first time I held him in my arms. He was wrapped cocoon fashion from head to toe in a white blanket. Even his face was covered. Having just been told that he had Down syndrome and knowing absolutely nothing about the disability, I was a little apprehensive about pulling the blanket away from his face. Would he look "different?" What would my reaction be? I had seen him only briefly in delivery before they rushed him to a waiting isolette.
Excerpts
Divine Wisdom
Even with the best of doctors, support groups, friends, and family, parents don't always find the answers to those questions and thoughts that play over and over in their minds. There are no easy answers. Time, prayer, and experience help, but nothing replaces divine guidance from Scripture. Through His Word, God places a healing balm on our hearts and emotions. If you're struggling with any of the questions below, perhaps these thoughts and scriptures will help:
Working Through Grief
As a nurse and parent of a son with Down syndrome, Joanne Woolsey is often called on to counsel parents of newborn Down babies. She tells them how much families come to love children with Down syndrome — it seems to be universal. But she also tells them it's okay to grieve. "You have to grieve for the child you were expecting before you can accept the child you have," she says.
Single Parenting a Special Needs Child
The single parent has unique needs and stresses, especially if he or she is the sole caretaker of a disabled child. One of the biggest pitfalls is the tendency to neglect your own needs. As Rosemarie Cook says, "We parents of children with special needs often forget how to take care of ourselves. We may be able to get along fine until some major stress or crisis develops. If we continue to ignore our own needs, we will suffer the consequences, mentally or physically or both It's a natural reacti
Special Stories
The Miracle of Jay-Jay
"He doesn't look like the other boys," Grandpa said as he viewed the blanketed bundle I held in my arms. He was right. James Ryan, whom we called Jay-Jay, with his skinny little legs, almost bald head, and tiny, slanted eyes, bore little resemblance to my other chubby babies with their full heads of hair. But I knew the comment went far beyond looks. Grandpa couldn't accept the fact that Jay-Jay had Down syndrome and had mental retardation.
A Daily Dose of Miracles
Having already experienced the death of my middle son to a rare congenital heart defect, I was devastated to learn that my beautiful, newborn baby boy not only had Down syndrome but congenital heart disease as well.
Special Needs Tips
Ten Tips For Caregivers
- Take time for yourself. Find something that brings you pleasure each day -- gardening, sewing, reading, crafts, or soaking in a bubble bath.
- If possible, take a weekend trip with your spouse or a friend. Even one day away from home is refreshing.
- Take care of your own health. Get regular checkups, exercise, eat properly and get plenty of rest. Your child depends on your staying healthy.
- Do something mentally stimulating. Work crossword puzzles, read, write a poem, a song, or a letter. Attend a pottery or computer class.
- Ask for help! A hard thing to do for those of us who have perfectionist personalities which say, "I'm the only one who knows how to take care of my child."
- Immerse yourself daily in the Word of God and in prayer. He is our strength!
- Do something for someone else. Bake cookies for a neighbor or take flowers to a "shut-in" friend. It is surprising how this will change your attitude.
- Find someone to help with your child. Teach them his/her routine and care, how to fix meals, and what constitutes an emergency, then carry a cell phone to feel secure.
- Join a parent support group. You will find hope, help and kindred hearts.
- Every morning, look in the mirror and say to yourself, "I am loved by my Creator." Then sing Him a song and dance to the tune God gives you.
Ten Warning Signs Of Burnout
Doctors Minirth, Meier, and Arterburn, renowned professional therapists, tell us that "burnout" is a state of mental, physical, and spiritual exhaustion. Some of the warning signals they give below also pertain to those who are "caregivers."
- Decreasing ability to function or perform
- Detachment or withdrawal from people
- Excessive, chronic fatigue or even exhaustion
- Increased impatience and irritability
- Feelings of being unappreciated
- Inability to concentrate.
- Physical complaints (headaches, backaches, stomach problems, etc.)
- Negative changes in relationships
- Disorientation and confusion
- Boredom, Cynicism, Depression
Tips for Churches
- Speak with the pastor--imperative to have support; have staff person for Special Ministry.
- Be accessible! Handicapped parking, curb cut-a-ways, wide doorways and bathrooms.
- Extended care for children with special needs during the worship service.
- Alternatives for visually impaired--large print, overhead screens, good lighting.
- Include the person who is disabled in all programs and activities, not just SS. If you offer children's choirs, mission activities, VBS, etc., include the child with special needs.
- Provide training for leaders and helpers.
- Present social activities for adults who are developmentally disabled.
- Develop a "buddy system" for adults with disabilities to sit with a family in church.
- Age-appropriate choirs for children, teens and adults with special needs.
- Allow the person with special needs to minister to the church body. Pass out bulletins, take offering, welcome people, etc.
- Sign language for the hearing impaired.
- Parent support group for parents in the church as well as the community.
- Respite Care for parents, even if it is only once a month or every quarter.
- When providing childcare for a church activity, also provide for children with special needs.
- Ask the family if there is anything "practical" the church can provide for them. Realize that most families will not ask for help but will accept it if it is offered.
- Meet with parents to determine whether self-contained classroom or mainstreaming is
best. - Draw near, not away from the family. One mom said, "I wish someone would have
wrapped their arms around me when my son was born, and said 'God made your
child and he will touch a lot of lives.' That would have given me hope." - Have program in place before a family walks in the door.