Developmental Delay: The Importance of a Medical Educational Notebook

As a mother of a child with Asperger's Syndrome, I know the importance in and the frustration felt when dealing with doctors. Six months ago my son was undiagnosed, which is typical of several developmental delays, particularly ones associated with, but not limited to, Autism Spectrum Disorders. I want to share with you what I consider the single most important thing that a parent or caregiver can do when faced with multiple doctor visits, particularly with doctors that don't seem to be listening. Hopefully this tool will help you navigate the dizzying array of doctor's appointments that accompany having a child with a developmental delay.

I refer to this tool as a Medical/Educational Notebook. On the American Academy of Pediatrics website they recommend having what they call a Care Notebook, which is much the same. Simply stated it is a binder full of information about your child. It is used to simplify doctor visits, organize your child's medical and educational records, provide information that you are often asked for, and generally help you keep your sanity. Essential things to include are:

1.Medical History-This will include prenatal and newborn care records; all test results, and reports and/or evaluations from specialist (including occupational, speech, and physical therapies). This portion of my son's notebook is divided by doctor or therapy type. For instance, prenatal, occupational therapy, and neurology all have their own section. This is important when dealing with several doctors and therapist because they may not all have the same information about your child and this may prevent them from repeating tests and procedures needlessly. To keep this part of the notebook current, ask for copies to be made while at the doctor's or therapist's office or ask for a copy to be sent to your home. If you ask each time there should be no extra charge. Don't forget to include a section for family history as you will be asked for this information several times and may not be able to always recall that Great Aunt Betty on your father's side had a child that had similar symptoms as your son/daughter.

2.Timeline of Events- Be sure to include a section devoted to your child's personal developmental timeline. Dates to include would be first steps, first time the child held a bottle, potty training, and when the child started solid food. This may be in the child's baby book, but when a doctor grills you for this information it is sometimes hard to recall.

3.Symptoms- As any parent of a child with an Autism Spectrum Disorder can tell you, symptoms can run the gamut from rocking back and forth to screaming every time a shoe becomes untied. An important thing to note here is that what doctors originally see as symptoms and what you, as a parent, think are strange quirks of a high-strung child, or the other way around, may be one in the same. That being said, the best way to approach this may be to keep a list of things that the doctor has noted and a separate list of things that you think are "different" about your child. I can use my child as an example; we thought it was strange that he would only eat cold food until I finally mentioned this to his occupational therapist who told me this was a sensory integration issue. This type of information is essential since the diagnosis of Autism Spectrum Disorders is completely symptom based.

4.Educational Records- Many times a doctor or therapist will ask if your child is under an IEP (Individualized Education Program) and if so what is included in the IEP. It is very important that this information be included in the notebook so that the doctor can write up the most accurate IEP recommendations. This section should also include report cards, standardized school test results, and progress reports. This may save time for you later if your child comes to need ADHD or similar medications because the doctor can read the comments made by teachers at an already existing appointment possibly eliminating the need for additional questionnaires and checklists from your child's teacher.

5.Business Card Holder- Doctor and therapist's offices generally have business cards at their front desk. Just make sure to take a card and slide it in the holder (these can be found at large chain stores in the office supplies section) and you will have all the phone numbers, fax numbers, and mailing addresses at your fingertips if you should need them. Keep an extra holder for appointment cards in the front of the notebook for easy date retrieval so that you don't double up on appointment times.

6.New Information- If you purchase a notebook with front and back pockets you will always have a temporary spot for new information. Each appointment has the potential to produce new information. Look around the office for pamphlets and flyers that you may want to read or investigate later. If you see a flyer sticking to a door or wall but none lying out, don't hesitate to ask the receptionist for a copy. Make sure to clean this section out often.

7.Pen and Paper- This is the area of the binder that I write all the questions that I would like to ask at the visit so that I can write down the answer. This is also a good place to jot down new instructions or information that the doctor or therapist gives you. As emotional as these appointments can be, it is difficult at times to remember everything you were told later on.

8.Medications- Make sure to have a list of medications that your child is currently taking complete with dosing and time taken. It is also important to include a list of medications the child has taken in the past along with a small note as to why it is no longer taken. My older son, who has ADHD, was on 6 different doses of different medications in one year due to puberty changing his body. Some of these medications didn't work and others had side effects.

9.Removable Sticky Tabs- These can be found at most large stores in the office supplies section. They can be removed without ripping the paper where they were stuck and reused several times. If there is a particular question you want to ask about a report or test result that you have already filed in the notebook, mark it with the sticky tab so that you can quickly find it during the appointment.

I hope that having a Medical/Educational Notebook helps you on your quest to help your child. I know that it has helped me. Please remember to take it to all medical appointments and IEP meetings.