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| When the Morgans of St. Peters learned their son, Adam, had multiple neurological disorders, it turned their lives upside down. The Morgans have learned to cope with the diagnosis and are a stronger family for it. “I love my son. He has taught me so much each and every day. He’s the sweetest little boy in the world,” Rachel Morgan said. (L-R): Rachel, Jeff, Hailey, 1; Paige, 3; and Adam, 6. Photo by Kiddie Kandids |
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By Jessica Pupillo
Editor of St. Louis Kids
When a child receives a life-changing or life-threatening diagnosis, there's a period of bleak darkness that can be all-consuming for parents.
In it, you grieve for the future that once held a world full of possibilities. You wonder if that future is still available to your child and if you have the strength and courage to see your child through whatever cards have been dealt. The grief can be debilitating.
But you can move through it and find hope and happiness. Here's a road map for dealing with a fresh diagnosis, created with the help of a local physician, a counselor and a mom of a special needs child.
1. Realize you’re not alone. Vip Singla, a hospital-based pediatrician at St. Louis Children's Hospital, delivers his fair share of bad news to parents. One of the first things he tells parents is that they're not alone. In many cases, there are thousands of parents in the St. Louis area dealing with the same diagnosis, he said.
2. Avoid the blame game. It's common for parents to seek out reasons for their child's diagnosis, Singla said. In the majority of cases, nobody knows exactly why a child is sick, Singla said. Blame and guilt won't help your child get better.
Rachel Morgan's son Adam, now 6, was diagnosed with a variety of neurological disorders, including Autism Spectrum Disorder, believed to have been caused by an anti-seizure medication Morgan was prescribed during her pregnancy. It's hard to not blame herself, Morgan said, but it's important to keep everything in perspective. "It is what it is, and I have a good life and a great family," she said. "I try to think about that when I have those feelings of 'you did this.'"
3. Consider a second opinion. A second opinion is particularly useful when you're not confident in test or evaluation results or if the proposed treatment is risky, Singla said. Don't be afraid to ask for a second opinion. "A good pediatrician will not only say, I think that's reasonable or you're welcome to do that but the tests are relatively sure this is what's going on, but they'll also be willing to make a referral," he said.
4. Talk to your kids. When your child is diagnosed with an illness or condition, it's important to talk to that child and the rest of your kids, said Tanya Crews, licensed professional counselor and registered play therapist supervisor at Total Life Skills Counseling. "Don’t act like everything is OK by not talking about it. They will overhear anyway and think the worst," Crews said. Be honest, be brief and don't worry about crying while you talk to your kids. "Keep the door open for questions," she said. "They will ask additional questions when you least expect it."
5. Get some extra support. A diagnosis can mean big change for a family, and caring for a child with special needs takes time, Crews said. Rely on family and friends to help. Consider joining a support group. Watch for signs that family members need some professional support. If you or your kids are having trouble eating, sleeping or with relationships, it's time to enlist the help of a counselor, Crews said. This extra support will help you maintain a relatively normal family routine.
6. Take care of yourself and your marriage. As the primary caregiver to your kids, it's easy to forget about yourself. But it's important to take some time out for you. Morgan's saving grace continues to be running. A diagnosis can be hard on a marriage, Morgan said, sharing that she and her husband have experienced their own ups and downs related to their son's needs. Everyone grieves differently and that can create conflict, Crews warns. It's important to communicate with your spouse, but it's also important for each spouse to have his or her own support system, Crews said.
7. Learn how to advocate for your child. In order to be a good advocate, learn as much as you can about the diagnosis. Ask your doctor questions, read credible Web sites and books, and join a local support group for information on your child's diagnosis. "Follow your gut - your maternal and paternal guts. Yeah, there are experts out there, but parents have to know that they're the best advocates for their child," Morgan said.
8. Keep your chin up. Remember that kids get through things a lot better than adults, Singla said. "Kids do get better," he said. "Even with a diagnosis of leukemia, we don’t talk about survival rates as much as we talk about cure rates."
9. Enjoy your child. Many parents of kids with disabilities report a finer appreciation for the small things in life and even the smallest accomplishments their child makes. Enjoy it.
"Every person in our family is a lot more open to really knowing there are different people out there in the world and we need to invite them in," Morgan said as she describes her son as happy, healthy and charismatic. "Every day is a gift."
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