Video: Time Management and Organization for the Special Needs Family, Oct 15th 2013 featuring Anissa Ryland, Executive Director The Johnson Center for Child Health & Development
Parent Perspective: Working with Clinicians
By Dawn Rossi
A first time appointment can be overwhelming and/or a huge relief depending on how prepared you are and how much there is to cover. Here are a few ideas for getting the most out of that first appointment and getting your child on the road to recovery as soon as possible.
Educate yourself as much as possible before hand. If the evidence-based medical approach Doctor has to spend a lot of time answering basic questions like "What is GF/CF and why does it work with some kids?" then you will be missing a chance to talk about deeper level issues that could be specific to your child. You'll miss the chance due to time running out quickly, plus it will be very difficult to understand those deeper issues if you don't have at least a good base of knowledge. Autism Research Institute has a great list of biomed books to read before your first appointment.
Ask the office ahead of time if it is OK to tape record the conversation so that you can review it later. Things move quickly and it is impossible to fully absorb everything at that first meeting, even if you are taking good notes. Make sure you have plenty of blank tapes, batteries, power cords and any other necessary supplies.
Consider how many times your child has heard adults talk about him/her, and his/her medical & behavioral history. Even children who appear to be in their own world will likely be taking in much, if not all, of what is said about them. How much pain might those words be causing the child? One of the best ways is to minimize these types of discussions is to type up a comprehensive medical & behavioral history so the doctor can read instead of the parents having to verbalize everything that has happened. Also, if the appointment is in person, it is very helpful to have another adult present so that the child can relax in the waiting area when it is not necessary for him/her to be in the exam room.
A comprehensive medical & behavioral history is CRUCIAL, not only for the professionals involved in your child's care, but for you as well. It should be written up using Word or similar software so that it can be easily modified, e-mailed and copied over time. Be sure to date the original version. If you'd like, you can use a different color font in the future for additions, and then put the revision date on top as well. Also, you will need to order FULL medical/mental health/therapy files from any professionals your child has seen over the years so you can review what has happened over time. With all that has happened with so many of the children, it is very easy to forget small but important details. Cross referencing the files (by date) from medical and behavioral professionals can be very enlightening.
Start with a short general section on social background - child's date & location of birth, date of adoption (if applicable), current family status, other siblings & their ages & issues, home & any significant events such as moves, divorces, deaths in the family, etc.
Add a short general medical section that includes the major problems, dxs that have been given and any unusual circumstances.
Start a very detailed medical AND behavioral, intertwined history. Be sure to include any relevant observations made by professionals at different times. Begin with any significant medical events prior to pregnancy, and continue with any notable occurrences during pregnancy and labor/delivery, and then on through the child's life. For adoptive families, include any pregnancy or orphanage/foster care information that might be available and then as much detail as possible from the moment you met your child. For each new paragraph, date it and also include your child's age at that time.
Here are some sample entries to help you get started:
May, 2002 (18 months of age) - "Hannah" was diagnosed with Sensory Processing Disorder. The OT's main concerns were that Hannah seemed to be able to tolerate an extreme amount of vestibular input, had no sense of where her body was in space, and that she was not crossing the midline.
June - August, 2002 (19-21 months) - Hannah had 2 ear infections and one case of strep throat. She was treated with amoxicillin on all 3 occasions. After the second round of antibiotics, she developed thrush in her mouth, and she was treated with Nystatin.
October, 2002 (23 months) - Hannah's aunt and cousins came to visit us for 1 week. Hannah was extremely aggressive with the other children and would often hit, bite, scratch & pull hair.
November, 2004 (just turned 4) - Hannah's preschool teachers were becoming increasingly concerned about some of her behaviors and learning techniques. They said they "couldn't put their fingers on the exact problem" but they had a sense that something was just not right. They suggested that we contact Hannah's pediatrician for a thorough evaluation.
December, 2004 (4 years old) - We had a full house of visitors. Everyone except Hannah got a terrible case of the stomach flu. It seems strange to us because she was often sick (and on antibiotics) as a young child, but now she seems to never get sick.
In addition to the above history, be sure to find the following 2 items:
Immunization History - In addition to the information provided by your doctor's office, see if you can cross check the height & weight of the child on the immunization dates. Also note if the child was sick, or on antibiotics at the time of any immunizations. In addition, if your doctor recommended that you give your child pain reliever/fever reducer before or after the shots were administered, include that information. If the information was not included in the full medical file, you can call your pediatrician's office to obtain the manufacturer and lot number of each vaccine your child received. That information will allow you to determine the amount of Thimerosal (mercury) the child received in each shot. If the child had any reactions to any of the immunizations, detail those reactions and any actions that were taken.
Growth Chart - Hopefully your child will have a good growth chart in the files. If not, you can request a blank chart and plot your own chart from the information in your records. Note any occasions where the child did not gain height or weight over an extended period. Also note any significant "jumping" of the growth % curves, either positive or negative. If there are any significant changes in %, see if you can cross reference those bumps or dips with any significant medical or behavioral occurrences.
I know this seems like a lot of work, but it is well worth the effort. Once you do this, it is easy to keep everything current over time. Also, with a detailed, written up medical/behavioral history, you can give you doctor a very good idea of your child's most pressing issues in a relatively short period of time. They can read the document in 10-15 minutes and they will have more information than they would have gotten in a Q & A session 5 times that long. It really helps you cut to the chase, which will make it much easier to pin point your child's exact challenges. Plus, it can save you a lot of money since you'll be able to get so much more covered in each appointment.