by Kate Welch
If you are at the beginning of your journey with a special needs child, some of this might be new. If you are, shall we say, more seasoned, some of this may help you too.
I arrive at this list after a clear-cut genetic diagnosis (though many more unrelated ones were to follow) and 19 years of experience. I hear from parents all the time who tell me their child’s doctor doesn’t take them or their questions seriously. As a parent, you know when something’s not right. You’re with your child 24 hours a day, in all situations, so if you strongly believe there is a diagnosis to be made, gather your facts, time charts, whatever you can to document the behavior and keep presenting until you find a doctor who listens to you.
When choosing a doctor I always think of the TV show Survivor. In any given cast, there are maybe two people among the contestants that I think I might get along with. Doctors are people too and none of us are going to get along with everyone we meet. Of course, when specialists are in play, there’s not much opportunity to choose and we have to get along with whoever we are fortunate enough to see. Once you have the primary doctor whom you feel understands your child, this list will help you to progress from there.
- Learn the Lingo and Do Your Research
When Caleb was three months old he needed a sedated cardiac MRI. We were at the wonderful Children’s Hospital of Philadelphia but I was still terrified for him. We checked in with cardiology then had to check in with the anesthesia department. Carrying the orders with me on the walk down the hallway I memorized the name of the drug and the dosage. As the doctors were preparing the anesthesia, I said, “I’m just confirming that you are giving him __ units of __.” I quickly forgot what I had said but the doctor looked up and said, “Wow. Are you a doctor?” I explained I was just a mom who loved her son and wanted to be sure he was safe.
Do your research. Caleb’s syndrome, 22Q Deletion Syndrome, has 185 possible complications connected to the syndrome, let alone Caleb’s unique imprint on his condition. No doctor can be expected to know every complication of every syndrome. When you do your research, stick within the parameters of your child’s condition and bring anything that fits to your doctor’s attention. If behaviors don’t fit into their current diagnosis, keep meticulous records to back up your theory.
After surgery when Caleb was 9 to repair a broken femur, something changed. Caleb seemed to not be quite all there. It really showed up in pictures. He had an EEG, saw his neurologist and primary pediatrician multiple times. It looked to me like Caleb had had a seizure, perhaps multiple seizures that changed him. When I broached the possible diagnosis of absence seizures, the doctors sprang into action, ordering every test they could. If any of your children have experienced absence seizures, you know they can only be detected while they are happening. Caleb may have had one, or none, or multiple but there was no way to pinpoint for sure. At the end of the day, if there was any seizure activity, the damage was done and irreparable.
Still, don’t make the well-intentioned mistake of thinking that a few hours of research makes you an expert. The doctor has the degree—many of us do not.
- Respect the Doctor and Their Time
Show up about 10 or 15 minutes early. Have any paperwork completed ahead of time. Bring a list of all medications (I keep one typed up and ready to go in Word) and any side effects your child is experiencing. Bring notes, a list of questions and a pen. Bring any recent lab results, hospital notes or psychological exams. Turn your phone on silent and put it in your bag before the doctor enters the room.
Conversely, if the doctor is running behind and your child is making a scene in the waiting room, ask the receptionist if you can wait outside or in your car and have them call you as soon as the doctor is ready to see you. We had one pediatrician who routinely ran two hours late. He was such a skilled doctor that I considered him worth the wait, but by the time we saw him, Caleb was a wreck and I was exhausted. The sensory overload of a small waiting room did him in. Letting Caleb run around outside or watch a movie in the car kept both of us calmer and led to more productive visits.
Explain why you are there as succinctly as possible. Then listen. The doctor has the degree—many of us do not.
- Look Worth Saving
A good friend of mine gave me this advice when I was going to see a specialist for myself years ago. She said that if you arrive looking disheveled and wearing sloppy clothes, you are not making a good impression on the doctor. It’s tempting to go in looking your worst, so everyone in the office can see how difficult your life is, but it’s counterproductive.
The doctor will likely have between five and fifteen minutes with you and your child, and that time is essential to be spent on your child and their needs. Even if you have no more time than to push your hair into a ponytail, make it a clean ponytail. Even if your clothes are from the last decade and your child’s t-shirt is at the end of a long chain of hand-me-downs, make sure they’re clean. Make the effort. My grandmother always said if your clothes are clean and your shoes are polished, you can meet the President. She was right.
- Be Completely Honest
This is the caveat to making the appointment all about your child. If your child’s behavior is out of control and affecting the entire family, you need to communicate this. Don’t assume that just because your child is jumping all over the room or screaming through the entire appointment that the doctor will magically figure out that it’s causing major stress in the house. You need to tell them. If there are no appointments available for a month, ask to leave a message for the doctor. Tell the scheduler you are in crisis and you desperately need help. No one will know if you don’t tell them explicitly that things are really that bad.
When Caleb was five years old, he was out of control. He would run up and down the hallway screaming in rage, for hours each day. I was near my breaking point. At an emergency appointment with the developmental pediatrician, we were discussing antipsychotic and depression medications. Then she looked over her notes from the previous three years. She looked up at me and said, “It’s the time change. You have been here every spring and fall with these behaviors.” She put him on melatonin to regulate his circadian rhythm and all of our lives changed for the better.
Our stresses and our children’s stresses are huge—good doctors can point us in the right direction.
- Write Thank-You Notes
In a time when most feedback that any professionals receive is negative, a thank-you note goes a long way. The doctor of a child with special needs often has to fill out lots of paperwork, much more than with a typical patient. They also have to have Dr. House’s recall of symptoms, traits and possible outcomes. Let them know you appreciate them. The note doesn’t have to be long, handwritten or fancy. My typical format is: Thank you for partnering with me to help give my son his best life. Thank you for taking such an interest in Caleb, and for all you do for him.
Remember that doctors are regular people and treat them kindly and with respect. They have issues in their own lives just like we do. I saw this recently when a neurosurgeon had to step out of the treatment room to take a call about her very sick father. I tend to elevate doctors to hero status so this was a major wake-up call. If there is a problem, speak directly with them if you can. Always communicate as clearly as possible.
The last tip I have is to remember that bedside manner isn’t everything when dealing with doctors. We have had super personable doctors and some who are cold and clinical. The most important thing to remember is that the treatment the doctor provides your child is the only thing that matters.
Kate Welch, author of the blog “Neverland Without a GPS” shares her journey as a proud, single mother of two great children—her 20-year-old daughter who is a microbiology major in her third year of college and her 19-year-old son who has 22Q Deletion Syndrome.
Through her series here, she hopes to reach out to everyone who belongs within the rare community and ben an asset who can spread knowledge and understanding on the topic of caregiving to an adult child.