David's Mom:
In the early days of diagnosis, getting a new diagnosis, tests, and therapies....things started to get confusing.
David was very small for his age and was starting to show signs of developmental delays. Our pediatrician began testing him for pretty much everything. And sending us to specialists. Each new doctor was another round of paper work and lots of questions. For a period of 6 months, we had a new test or specialist every week.
By the time David was 2, those visits were filled with a cranky toddler and a new born little brother. I was doing good just to keep from leaving a trail of Goldfish crackers in the office and remember my own name. In an effort to keep my sanity, I put together a notebook to help keep track of everything.
I used it to help me have a place to put all of the information coming at me.
I also used it to help answer all of the questions that the new doctor or therapist would ask me. I didn't have to remember what vaccinations he had when. Or when he started on solid food or slept through the night. It was all right there in the notebook.
Types of items in our notebook:
1. A detailed time-line of pregnancy, birth, developmental milestones, tests, etc. This time-line was very helpful to just hand a copy to a doctor and let them scan it. A lot of the specialists in the early years really wanted every detail and this certainly helped. But it also helped me to have a list to refer back to when the doctor asked things like "What was his APGAR score?" When your baby is 6 weeks old, this isn't so hard to remember. When he was 4, it was a faint memory that there even was a test with that name.
2. An updated list and dates of all vaccinations.
3. Evaluations from OT or speech.
4. Evaluations from pre-school teachers. (These were helpful because it was a different environment than the home where I observed him).
5. Hearing tests, allergy test, lab results. (All of these test results at my finger tips helped to avoid different doctors wanting to perform repeat tests.)
6. IEP from the county (in preparation to begin Kindergarten).
7. Services offered from each clinic, doctor's office or from the county.
8.The standard developmental milestones from each doctor appointment.
9. My notes from each doctor appointment.
10. A copy of any prescription he was taking.
11. Drawing samples (when he was little). A little drawing he made when he was 4 led a specialist to point out to us that he was drawing things 3 dimensionally. We did not realize this was unusual for a child his age. Later, we included writing and school work samples.
12. As he got older, I would ask David if there was anything he wanted to include in his notebook to represent himself to his doctor.
The notebook is heavy and not that pretty to look at. But I've carried it around for 15 years. Our process of looking for answers started at 6 months. It wasn't until he was 5 that we heard the words "Asperger Syndrome" when we found our Developmental Pediatrician. I was able to catch up our new doctor quickly and answer all of his background questions because of this notebook.
And do you know how I knew exactly when that happened 10 years later? It is in my notebook.
Recent Comments