I was cleaning out a drawer and came across a note book that was used to communicate with Reilly’s preschool back when she was 2.5 years of age. This school was a 5 minute walk from our house at the time . I remember this time period very vaguely for there were a lot of dark days and London was only a few months old.
Date: September 11, 2007
(first entry in the book – addressed to Reilly’s preschool staff)
Although we do not have a confirmed diagnosis yet for Reilly, we are confident she suffers from a serious genetic neurological condition (at this time my research pointed me to Rett Syndrome but was waiting for the doctors to catch up). As a result, Reilly experiences many developmental issues that include her ability to communicate, perception of time and space, sensory issues and cognitive impairment. It would not be feasible to describe all of Reilly’s issues but over the next few weeks I hope to provide you with tidbits as they can help with her integration into the preschool environment. Likewise, if you can assist me in my efforts by quickly documenting a couple of things at the end of each morning (Today – as this time period was such a fog, I can’t even remember when Reilly went to this preschool – every morning or just a couple of times a week, don’t know).
Important: Reilly was taken off her epilepsy medication Friday, September 7th due to a serious skin reaction. Prior to this she has only experienced absence seizures. If she appears to be experiencing a seizure pleas let me know. Seizures comes in many different forms so let me know if any “weird or unusual” behaviour (distant gazes, blank look for seconds, eye rolling, etc.) .
(1) During morning snack – seat Reilly last and once the food is ready. Or else Reilly will clearly show impatience. Being patient is not something that can be taught with children with this type of neurological disorder (Today – It is funny but I was at the beginning of this journey at this time and in reflecting back to these writings most of my initial learnings/thoughts still hold).
(2) When changing Reilly give her a toy/book to help distract her , anything Winnie the Pooh related will catch her attention. (Today – Five years later and she still LOVES Winnie the Pooh).
(3) If Reilly ever becomes distraught to the point of inconsolable give her anything Winnie the Pooh related. I believe Melinda has a toy in her office that might do the trick (Today- works to this day like a charm).
It is absolutely incredible to go back to this time through these notes. Although this was a dark, dark period for us we were still presented with hope in different forms to keep us going. One of them being this particular preschool. They opened their arms wide in taking Reilly into their program without any extra funding despite the one-on-one care required and gave us much needed respite a couple of hours a morning so I could attend to London. A little blessing. Even though I gave them every indication that we were grateful back then it would be nice to send them a card again expressing such gratitude during this time. As I type this I will mentally add them to my Christmas card list for this purpose.
A shift is happening…