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What’s in YOUR Notebook?

It took me a few months to conceive and put together a special notebook and get it fully operational, but my Angelina Notebook is now a mainstay regarding my relationship with my granddaughter.

Perhaps you have something similar regarding your autistic grandchild, or perhaps you have advice regarding something even more useful.

Simply put, my Angelina Notebook is a reference and guide for my interactions with Angelina – almost all of which are times that I keep her while her mother is at work as a nurse in a major hospital: a few times every week including some overnight stays.

Following is the list of Tabs and contents of my Angelina Notebook. (And again, I welcome your advice on how to improve this and/or to have a whole different system.)

My photo is a goofy one that I know will always get a smiling reaction from Angelina.

  1. ONE – CONTACTS This is the list of persons whom I might need to contact – and their cell/home/office contact information: my daughter’s several telephone numbers at work, as well as the exact location (building/floor) of her work, as well as the numbers of a couple of others at her work who can contact her if I can’t reach her direct; ditto for my daughter’s fiancé; Angelina’s primary care physician; etc.

  2. TWO – PHOTOS OF ANGELINA’S “FAMILY” (immediate family and a few significant others) I show these to Angelina every time she visits – hopefully helping to convey the importance of my Angelina Notebook.

  3. THREE – EMERGENCY MEDICAL INFO Here I list the top priority things that healthcare workers need to know (including insurance information) if ever I have to take Angelina for emergency medical attention.

  4. FOUR – FOOD This is a continually-added-to list of food/drink that Angelina likes. (She had significant eating disorders during her first couple of years – so it’s wonderful when we discover new things that she likes to eat.) Simply having this list to refer to is great when it’s time to prepare meals and snacks.

  5. FIVE – ROUTINE MAINTENANCE This is an ever-DEcreasing list of things I am required to do when Angelina stays with me. It was a long list when she was finally released from the hospital 130 days after she was born. At that time she was tethered to a feeding tube, a pulse/ox wire, and a nasal cannula. And she took various medicines at various intervals. Now, at 4 years old, those things are long gone, but I still list a couple of things that I do whenever she visits. One of them right now as I write this is to check her tick bite. (From a strawberry-picking outing a week ago.)

  6. SIX – FUN STUFF This is a continually changing list of things that Angelina enjoys doing when she visits me. One recent addition is Flying a Kite (we drive to a vacant field). One indoor activity is playing with kinetic sand. This section also includes photos (when I have time to take them and attach them) of some of the things. Angelina will stay with me this coming weekend, and it will be so nice to be able to continually refer to this list when she and I are deciding what to do next.

  7. SEVEN – GOALS This is a short but continually changing list of a very few goals/accomplishments – each small enough to be attainable - that I try to work on with Angelina. When she accomplishes a goal, I add a new goal. One current goal is for her to enunciate the “f” sound. She currently says it like “b.” And we’re getting there. She now lets me fold her lower lip up under her upper teeth and when she then emits a sound, often it’s the proper “f” sound. I’m hopeful that she’ll accomplish the goal within the next couple of weeks, and then we’ll tackle another enunciation challenge. Angelina now talks in full sentences, but her enunciation is such that often only we family members know what she is saying. Each time we work on a specific goal, I’ll put a mark next to that goal in the notebook.

  8. EIGHT – VIDEOS (TV shows, movies, YouTube stuff - anything that can be seen on a television) This is a continually changing list of things that Angelina really enjoys watching on television. This section also includes photos (when I have time to take them and attach them).

  9. NINE – VISIT RECORD This continually-added-to section is basically an ongoing “journal” of Angelina’s visits with me. Every time she visits, I list the date and get her to add a sticker. (Any sticker works; I use whatever is at hand). Then, after she leaves, if I have the time and energy I’ll write a very brief note about the visit.

My Angelina Notebook was a long time in creation, but in my case it was worth it. Oh, one last thing, if you make one of these, be sure to tell your grandchild’s parents that you’re doing so, and get their advice regarding what they think should be in it.



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