“There is a seventy percent chance that your son will never walk, talk, sit, stand, feed himself, dress himself, or do anything but lie limp in your arms for the rest of his life.” The neurologist’s words echoed in our ears as we stared blankly at the wall. To this day, every time we sing that song in church about “my darkest hour,” I think about that trip to her office. Overwhelming grief rocked our world. That day, the baby we thought we had … died. A child with a different potential future emerged. His body was the same. Our perception of him changed. Our love for him did not.
“You know, you will have to make friends with people who have children like yours. All of your friends and family will abandon you, because people are afraid of children with seizures.” The incredible cruelty of that statement can only be fathomed when taken in context. Those words spoken late at night as we began our first seizure treatment in the hospital came from the mouth of the nurse attending my son. She left the room, and I cried until there were no more tears. I wish I could say I cried myself to sleep, but sleep eluded me. Loneliness set in, and in the wee hours of the morning, faces of family and friends crossed my mind. I could not help but wonder if they would do just what that nurse had said.
I shall forever be grateful for the mom from church whose baby was two weeks older than my son. She called the hospital long-distance every day to see how we were doing … For the family members who came on a daily basis, just so the days would not seem interminable … For our church family, who provided meals … For my best friend’s husband, who worked the late shift every day, so he could keep my older son while my husband worked and I stayed at the hospital … And for several different people who, not knowing what else they could do, gave us cash to help pay for hospital meals, parking, and other expenses we were facing.
As those dark days have turned into years of facing various unknowns, family and friends who have turned that nurse’s words into a lie have blessed us indescribably. We have been even more amazed by the people whom we have met along the way who have warmly accepted us and our son—who have joined us in praying for him and rejoicing over the unbelievable feats he has accomplished as he defies the odds and moves closer and closer to being a typical child. We would not have had the strength to help him along the way if we had not been supported so strongly by our family, church family, and friends, especially those in the home school community.
Often, when a family faces such a devastating diagnosis as our son’s, those who surround them wonder, “What can we do?” Perhaps our experience can help you form some ideas.
- Pray. Pray daily for the child’s specific circumstances. Ask the parents what their current goals for the child are, and pray about those issues. Pray for strength and wisdom for the parents. Pray for other children in the home. Pray for the professionals (doctors, therapists, etc.) working with the family, especially that they might be compassionate and sensitive and not cruel or discouraging. Pray for the family’s finances. Pray for the parents’ marriage, which will be strained or strengthened, depending on how they perceive the situation and how much they press in to the Lord.
- Listen. In America today, we think we are supposed to know all the answers. We thrive on solving each other’s problems, on giving the best advice and then seeing it work. There are no easy answers for the family with a special needs child. There are no canned responses to their problems. Do not avoid them if you do not know what to tell them. Just listen. Hear their hearts. Like parents of typical children, they want the best for that child. You do not have to know what to say, but they need to know that someone is listening. For some, you may be the ears they can see that help them understand that God hears, too.
After you have listened, pray with them. Do not worry about whether you know how to pray aloud. Frankly, whatever you say will be beautiful in their ears. What will matter most is not what you say but the fact that you were willing to say it.
- Learn. Learn all you can about the issues the family is facing. Read. Ask questions. Most families do not object to a gentle question such as “Would you mind telling me your child’s story?” As the parent opens up, ask first, “May I ask you a few questions?” before you begin to probe. Some are ready to face the hard questions that may surface; others are not.
Once you know what specific labels or diagnoses may be involved, educate yourself. Learn everything you can about what that family is facing. Reading is not the same as their personal experience, of course, but you can familiarize yourself with some of the terminology and challenges.
- Give of your time. Spend time with the family. Interact with the child, gradually introducing yourself into his life. As he becomes familiar with you, his parents will come to trust you, and that will free them to leave him with you for short outings. It is also very, very important to a family with a special needs child to establish normal social relationships, to have friends whom they can visit, to have friends who can visit them, to have someone to talk with about other things besides the child in need.
- Remember the other children. Encourage your children to develop friendships with the other children in the family. Offer to have them over—without expecting reciprocation. Help them have as normal a life as possible. Offer to take them on home school field trips, which may just be too overwhelming for Mom to consider. Take them along on outings, camping trips, and other experiences that their family may not be able to have.
- Do not judge or criticize. You have no idea what this family is facing. A child with a disability who “acts out” is not a reflection on the parenting ability of the adults in the family. Dealing with his behaviors is hard enough for the parents—without having to face peer judgment, too.
- Bless them financially if you can. Understanding, of course, that many home school families are living on one limited income, I offer this advice as a reminder that the special needs family has additional financial stresses. If you can, find a way to do this subtly. Money is the hardest thing for a family to accept. Can you share your tax refund? Can you pass along outgrown clothes or curriculum you no longer need? Do you have a garden the bounty from which you can share? Whatever you pass along that they can use will save them that expense later.
- Serve. Give of yourself.
- Prepare a double meal one day a week and deliver the extra portion to this family.
- Offer to care for the child so the parents can go out. (Note: Unless the family says otherwise, most special needs children function best in their own homes and would do better if you would take the time not only to keep them but also to go to their house to do it. This eases the transition away from Mom and Dad as the surroundings are still familiar.)
- Do some laundry for the mother so she has more time for the child.
- Call before you go to the grocery store and see if she needs anything.
- Sometimes the thought of taking that child to the store is so overwhelming that Mom will forego the needed items instead of making the effort, or she will wait until Dad is home, and then lose family time in the evening when she runs that errand.
- Some special needs children, especially those on the autism spectrum, require hours of intensive therapy that can be quite expensive. It is possible, however, for volunteers to be trained in the methodologies and be part of the child’s program. Find out if the parents could use help in a home therapy program, and volunteer to be trained and spend regular time as a therapist in that program.
As I sat here struggling to wrap this up, my son started a Donut Man video and began to sing along. I thought his little voice singing, “God, you’re so good, you’re so good to me…” was the sweetest thing I had ever heard. He is so right, and someday, we will tell him just how good God really is to him. Until then, we can say without a doubt that the hospital nurse was so wrong, that God has been faithful to provide a loving atmosphere for our son, full of accepting, sweet friends at church and an incredible family whose support would take too much space to describe. Indeed, God is so good; He’s so good to us.
A Lesson in Humility and Receiving
Four years ago, a friend introduced me to someone she knew. This lady became my shopping partner in a produce co-op, so we spent some very early Saturday mornings together shopping and talking. My oldest son was the same age as her son, and we decided to get the boys together to help them develop a friendship.
After a few months of watching our family, my new friend Lisa Milburn said to me, “You need a break. Let me keep your kids for three hours every week so you can run errands and have some time to yourself.” At the time, my autistic son was a very high-intensity child. He often injured himself in frustration, as he could not communicate. Over time, Lisa has learned from us how to do his Sensory Integration therapy, how to support his use of a picture communication system (now no longer necessary), and how to prepare what he could eat when he was on a special diet. She has cared for him as near to the way I would as she could possibly imitate. She has learned all she can about him and his needs.
On more than one occasion, when we have had emergencies or needed to get out of town for a church retreat or a quiet weekend to ourselves, the Milburns kept the children. Her daughter is now a teenager and is beginning to take some of the responsibility, sometimes babysitting by herself for a few hours at a time. When the Lord added a new baby to our home two and a half years ago, Lisa asked me, “You will leave the baby, too, won’t you?” She wanted to be sure I knew that she was willing to keep all of the children so I could get a complete break.
Thanks to her experience with our family, Lisa has started a program in her own church to help special needs families. Called Bible Buddies, the plan provides helpers to attend regular classes with special needs children so that parents can attend their own classes and worship without taking their children along. Lisa has also noticed that her own children are now much more accepting of children who are different, as they are not alarmed or surprised when they encounter special children in public.
It is unbelievably difficult for me to swallow my pride and say that I need help. Over the past four years, I have learned to let go of the feeling that I need to “pay her back.” There is no way I can ever repay Lisa and her family for what they have done for us. I have to trust that she will receive her payment when she hears, “Well done, good and faithful servant.