special needs children
Your Relationship With the Doctors
Find positive doctors
It's vital that you choose physicians in whom you have confidence and with whom you enjoy open communication. A good dose of optimism is also beneficial. Even with the worst diagnosis, a doctor should never destroy a parent's hope. After all, only God knows the ultimate outcome.
Understand, however, that the doctor may be trying to avoid giving you unrealistic expectations. It's his job to diagnose and treat your child's illness or disability, and he's probably doing the best he can. But it's also his responsibility to give you the information you need to become an informed and involved parent. Physicians, therapist and parents need to work as a team to provide the best plan of care for your child. Never underestimate your importance on the team. Your input and insight are vital!
Stephanie Alexander is adamant about having positive doctors around her daughter, Audrey, who has spina bifida. Audrey sees a neurosurgeon, orthopedic surgeon and an urologist, along with the pediatrician for normal childhood illnesses.
"Going to the doctors' offices can wear on you mentally, so we surround ourselves with specialists who make us feel they truly care about Audrey," Stephanie says. "They focus on her, smile at her, maybe even hold her." At one point Stephanie changed doctors, driving three hours every three months so Audrey could be treated by a physician who believed she would walk rather than one who held little hope. "It was worth it," says Stephanie, "and Audrey is walking!"
Unfortunately, with today's managed health care, you may not have the option of choosing your physician, especially when a specialist is needed. Your primary care physician will make the recommendation. Ask to have as much input as possible in choosing the physician, however; then make the best of the situation.
If the relationship with your child's physician starts out rocky, it can turn around if the doctor truly cares about your child and is willing to listen to you. But if the doctor is uncaring, rude or doesn't treat your child with dignity and respect, do whatever it takes to find another physician!
Quiz the doctors
To gain greater understanding of your child's disability, quiz the doctors. In the words of one dad, "Question the doctors until they're tired of answering." Of course, that's extreme, but the message is clear: Ask, ask, ask! You will never learn what you need to know about your' child's disability unless you ask. Don't just stick to general questions about your child's health, either. Ask the probing questions that haunt you day and night, such as:
- How many children have this disability?
- What is my child's life expectancy?
- Have you ever treated children with this disorder?
- What can I do at home to help my child?
- Is this hereditary?
- Why did this happen?
- What treatments are available?
Deep inside, you may even be asking, "Can you fix what's wrong with my child?" But whatever your questions, make a list of them. Ask about anything that bothers you. You need information. Without it, you can become anxious and upset. With it, you can have more peace of mind and choose the treatment and programs that will best help your child.
Martha New kept a log of things that were happening at home when she and her husband, Bayne, were searching for a diagnosis for their daughter, Jennifer. "It's very useful when you go to the doctor," Bayne observed. "You can say, 'She does this at these times.'" They learned that the more specific they could be about their daughter's behavior, the better their chance of getting an accurate diagnosis. It would also be beneficial to keep a log of your child's medications and her reactions.
Tips for visiting the doctor's office
- Keep a notebook or journal of your child's medical history, development and any specific behaviors that could be useful for the physician to know about. Include medications, allergies and reactions. One mom even used a picture album to show her daughter's regression. It helped the professionals determine a diagnosis.
- Educate yourself on your child's disability or illness with medical books and articles written for lay people so you can ask questions.
- Write out your questions. In the stress or rush of the appointment, you might forget something important if you don't have it written out.
- Take a pen and paper for note taking. Ask the doctor to repeat or reword anything you don't understand. If necessary, ask for permission to record the conversation.
- Allow yourself time to make well-thought-out decisions. Only in an emergency should you have to make hasty decisions.
- Support your fears with facts. If you're concerned about a treatment your child is receiving and want the doctor to really listen to you, back up your thoughts and feelings with facts. For instance, if you're concerned about dosage on a medication, note the time the medication was given, when it wore off and any reactions your child experienced. This gives you factual data to support your anxiety and questions.
- Check the doctor's credentials. If your child is having surgery, ask the doctor if he performs this surgery often. Make sure each of your child's doctors is a pediatric specialist, including the anesthesiologist. Be aware that doctors must inform you of all risk factors. You may also ask the percentages of each risk occurring and which dangers the doctor has personally seen develop. Finally, ask what the physician's personal recommendation would be.
- Prepare your child ahead of time for a visit to the doctor or hospital, letting him or her know what to expect. For instance, you might choose not to allow injections on "well checkups." That way, your child is never stressed about going. If immunizations need to be updated, make a separate trip, with the child already prepared. Of course, you can't make such promises on "sick" visits.
Keep a balance
As important as gathering information is, be careful to keep a balance in your life. Become and remain an informed parent, but don't make the pursuit of knowledge your main goal. Search out the program that will help your child develop to his or her highest potential. That could be the first program you observe or the tenth.
Bonnie Shepherd tells how she became obsessed with gaining knowledge when her son, Adam, was born: "I would go to the library and find everything I could and ask friends who were doctors to do the same in their medical libraries." She then made a list of possible resources and placed it in the public library for other parents. Although she gained valuable information about her son's disability, she found that her expertise actually worked to her disadvantage at times.
"I would go into a doctor's office, and when we talked he would think, Oh, here's someone with knowledge, so I can talk to her on a different level. Then the doctor missed the personal side of what was going on with my child. And I was doing this intellectual exercise and discussing physiology when I probably needed to know more practical, day-to-day information."
And all the information Bonnie received still didn't answer the basic questions in her heart: "Why did this happen to my child?" and "Did I do something wrong in my pregnancy?"
"I may never know what caused Adam's disability," she says, "but I do need to know how to become an expert on raising my child." So she shifted her focus to doing things that were important at the moment — practical things like therapy and networking with other parents of children with special needs to find programs, or even creating them if nothing was available.
Bonnie still recommends that parents gain a thorough knowledge of their child's disability, but her definition of becoming an expert is that parents recognize the subtle little things about their child that other people won't pick up. "I realized I needed to be really tuned into Adam's needs and know how to meet them," she says.
Background Information
Why So Quiet?
These are some causes and signs of autism, and what parents can do about it.
Working Through Grief
As a parent of a child with Down syndrome, you have to grieve for the child you expected before accepting the child you have.
Questions and Answers
Where can parents of special needs children find support groups?
Answer
Review Frequently Asked Questions
Stories
Eliana Joy
When Eliana Joy died from severe brain abnormalities, her parents faced the toughest test they'd ever faced.
Adam's Story
Special Needs children require faith, lots of love and courage
Our Son Joe
The following letter was written from the father of a child born with Spina Bifida.
Too Young To Die
Living with a seriously ill child can seem too much to bear.
If you've been through a experience related to this topic, we invite you to share your story with others.Share Your Story
Other Things to Consider
In His Image
Her genetic makeup said she was flawed, but her Father thought otherwise.
A Spiritual RX for Healthy Mind and Body
A new study of bereaved spouses shows a significant link between religious faith and the ability to heal after a loss. It's just one more confirmation of the faith/health connection.
Bearing the Burden of a Child's Illness
In the midst of a devastating diagnosis, sometimes all you can do is to trust God.
Divine Wisdom
If you're struggling with any of the questions below, these thoughts and scriptures may help.
Related Topics
Transitions: Having a Baby, Preparing for Adolescence
Life Pressures: Working Moms, Stay-At-Home Moms, Time for Family
Relationships: Parents and Adult Children, Blended Families
