Five Tips to Get the Most Out of Any Appointment for Your Special Needs Child….
When my son Evan was born suddenly and quite unexpectedly at just 25 weeks prematurely, we were caught up in a maelstrom of emotion and had absolutely no idea of the aftermath that would soon ensue. After 126 days in a level four trauma center, Evan stormed the doors of the NICU and was released to us on July 14th, 2006, an anniversary we celebrate just as heartily as his actual birthday. At the time, we thought the worst was behind us, and Evan would be free from constant evaluation and assessment under the care of every imaginable kind of specialist. Boy, were we mistaken! Just a few days after settling in to a routine, we were required to attend on-going appointments. Some of these included ‘step-down’ or ‘follow-up’ clinics for on-going study and analysis. That was decades ago and since that time we’ve continued to see all kinds of ‘ists’ and ‘ologists’ to ensure Evan’s on-going health and continued growth. These appointments have taken us all over the tri-state area, in all sorts of weather and in every possible scenario. Throughout this journey, I have learned a great deal-mostly as a result of the mishaps and mistakes that I’ve made along the way. Here are a few simple tips I’ve found extremely helpful and hope they will also prove useful to you as well !
Above all, always remember that no one knows your child better than you – don’t be afraid to speak freely about something you feel is inaccurate or untrue. Also, keep in mind that medicine is not an exact science, it’s dynamic and continuously changes with each new discovery. Perhaps your child will help enlighten a doctor with a new perspective during your next visit! Try to remember that no matter how challenging a conversation becomes, never-ever lose hope or faith. At times, I’ve relied solely on hope and faith to fuel me through the darkest of times and diagnoses, helping me navigate the challenging and uncharted waters of special need parenting. Most importantly, consider the power of ‘yet.’ What your child cannot do today, may become what he or she will do tomorrow. History is yet to be written and not pre-determined!
1.) Plan ahead: As soon as you make the appointment, write it down somewhere safe! I usually mark it on my paper calendar at home and work, create an event on my Google calendar and also put a Post-It note on my laptop a few days prior to the date. If I have to take the day off from work, I will submit my paperwork requesting time off just as soon the appointment has been confirmed. Make sure you have your preliminary paperwork in order. This may include completing your pre-registration and/or any updated information. Most businesses offer on-line accessibility thereby simplifying the process. I typically complete the paperwork and then copy or email a scanned version of the paperwork to myself so I don’t have to duplicate my efforts if the office misplaces them or claims they never received them. It’s always easier to have any paperwork completed prior to the day of your appointment and it’s a HUGE time saver, instead of completing it upon arrival at the doctor’s office. By doing so, you can then use the time while you wait to read to your child or spend the time perusing through a mindless magazine. I truly believe that early preparation also provides a little bit of clout with the office staff as well, and may help to move along your appointment all the more sooner! Before you leave for your appointment, do a final check to make sure that you have your insurance card, a form of identification as well as any paperwork that may be needed such as letters of medical necessity, prior authorizations, and assessments completed by teachers/therapists/other physicians (Vanderbilt/Connor scales,etc.) readily available. Depending on where you will travel for the appointment have cash for tolls and/or parking. We have an Easy Pass that my loving sister gave to us as a gift years ago for a Christmas present. She pays for all of the tolls on a monthly basis. I can’t tell you invaluable it has been for us. Believe it or not, the tolls and parking can add up very quickly! It’s also so much easier when driving on a major highway to access the Easy Pass lane- as you avoid so much of the bottle necking and normal toll traffic. Depending on the facility, you may also need to pay for parking, so make sure that you keep some cash readily on hand for parking in case complimentary parking isn’t available. I always have a few singles tucked away in my wallet in case I need cash for a parking attendant. Interestingly enough, there is one hospital (ironically a children’s hospital) that doesn’t offer preferred parking and the disabled parking spaces are always taken! While some hospitals validate parking, others do not. More often than you would imagine, we are forced to pay for parking and then wait in line for the valet. I’ve written letters to the numerous directors and members of boards- but alas not much has changed, so be prepared! On a more positive note, we’ve also experienced the complete opposite end of the spectrum, where one location offers free valet parking, a beautiful family sitting area, a huge aquarium to keep the patients entertained and all the water, coffee and/or tea you could ever want while waiting for your appointment. They even provide gift bags for the kids, (containing sensory toys, small puzzles, books, etc) so we always arrive a bit early for those appointment so that we can grab a free bag of swag! Over the past 14 years, I’ve experienced quite a range of experiences, from the utter ridiculous to the complete sublime!
2.) Write down your questions before the actual visit: Organize a list of questions and either write them down in a small notebook or have them available digitally. It’s important to have your questions readily available so that you remember to ask them! Throughout the years, I’ve assembled quite a collection of small notebooks that I have kept containing all of my thoughts, questions, and notes so that I can refer back to them at a later point in time. Don’t worry about writing down every word that is shared as the key ideas will be summarized and made available via your discharge papers. Also, before any appointment, I usually refrain from researching too much. I learned early on with Evan’s multiple diagnoses of ADHD, cerebral palsy, a sensory tic disorder and Autism, that having access to the internet and Web MD is often a mixed blessing- not everything that you read is accurate and/or pertinent to your child. In some locations, I have been able to record the visit on my phone. Check with the doctor/facility to see what their privacy laws involve, some HIPA laws prevent such a practice, but double check to be sure. Sometimes the notion of ‘less is more’ is very applicable when it comes to prior knowledge and keeping yourself on a need to know basis as it can help to allay any unnecessary fear and anxiety.
3.) Bring along help: These doctor appointments can get very challenging-they are not meant for the fainthearted, so always bring back-up in the form of helpers! Recruit any adult that you can to accompany you and tend to your child, while you listen attentively. When Evan was really little, my mom and stepfather would not only come to the many appointments, but also drive Evan and me. Due to Evan’s premature birth and extended time off from work, Erol we really had to carefully budget Erol’s vacation days. Having along another adult can be incredibly helpful in a multitude of ways. One main reason was that I could focus on the conversation between the doctor and myself, while they tended to Evan. I remember on one occasion, I had to go alone to a doctor that had been highly recommended for kids with cerebral palsy. Evan was still very young and in a baby carrier. I recall how upon entrance into the room and after about 20 seconds of observing Evan he announced that he had two words for me “cerebral palsy.” Well, the very next thing that I knew, I was seeing white dots against a black background and suddenly falling. I literally passed out from hearing those words! I never went back to that doctor and started to see one that fully understood that he was not just treating Evan, but also his family as well. I could only accept ‘developmentally delayed’ for the first three years of Evan’s life before finally being ready to accept and embrace his many other diagnoses.
Another reason why another capable adult is necessary to have on-board is that a change in setting, sights, sounds and smells can set off a child with sensory integration issues and they may need consoling. When Evan was a baby, I would bring along his favorite cuddle toy to help soothe him. As he grew older, it became a favorite small game or book. It might even be a drink or a tiny snack to help keep him occupied. Finally, having another adult present can be hugely beneficial to you as well. So often I find that I am completely drained of all my energy and ability to cope, even the slightest of challenges can set me off in a tailspin of emotion. Another person can provide you with support that you may need as well!
4.) Make a trial run: This may seem excessive and overly cautious, but I’ve missed many appointments due to traffic, challenging routes, construction, inclement weather and/or just getting lost. It only takes one time of missing an appointment that you’ve waited six months to schedule before you cry your way home! Mapping out routes, alternate ways and short-cuts have proven to be an invaluable way of arriving at appointments on time. In addition to the actual location, you’ll need to navigate the logistics of parking, which can range from free valet parking to having to park blocks away from the actual location! Finally, do your homework! Some specialists have satellite locations where they see patients. For years, we trekked into NYC, fighting rush hour traffic, paying for expensive parking, walking two blocks and up several flights of stairs to see an eye specialist only to discover that he had an office 20 minutes from our house!
5.) Listen, rinse and repeat: When this journey first began, I would often find myself having out of body experiences as the doctors would explain some of Evan’s conditions, diagnoses and co-morbid conditions. The words would become garbled and incomprehensible as my anxiety level heightened. It was all so incomprehensible and overwhelming. How could a little baby have so many conditions? How would we understand them all and most importantly how would we ever meet his ongoing and ever-changing needs? During visits to the multitude of specialists that we’ve seen, I’ve fainted, thrown up, cried, almost peed my paints, you name it, and I’ve experienced it! Receiving feedback or the results of an assessment (s) in a new and sterile environment from a complete stranger that could determine the supposed ( I say this as medicine is not an exact science and so much of what we’ve been told in regard to Evan not being able to reach certain milestones has not been true! Have faith!) future of your child can be immobilizing. In order to quell some of the soul-wrenching anxiety that I’ve experienced, I’ve learned to repeat back some of the information that I’ve been given in the form of a question: “So, if I understand you correctly, my son has spastic diplegic cerebral palsy, while it won’t continue to evolve, it will never be resolved, is that correct, doctor?“ I find that this strategy not only helps me remember what’s been said, it also provided additionally clarification should I not recall the information correctly. Many of the major hospitals are teaching hospitals and often have fellows and medical students accompany the specialists. I’ve always had great experiences within these settings, as I find the doctors spend with us during or visits and explain the information in greater detail.
Over the past 14 years, I’ve definitely developed some coping skills. One that has helped me tremendously is attempting to leave behind all of my fears and anxieties and just be ‘in the moment.’ Good, bad or otherwise, I know that we will get through it. With a little bit of help, preparation and a whole lot of hope and faith, you will too!
