On the back of a Rett Syndrome fact sheet dated 10/01/2008 (Reilly would have been 3 years and 6 months old), I have made the following notes:
Challenges of Rett Syndrome->
(1) Feel very isolated from others – difficult to bring Reilly out to social events – in part due to her anxiety/transition/sensory issues and in part due to these events not being a conducive environment for her to walk around without falling or knocking things down.
(2) People find it difficult to tolerate her screaming. She has a high pitch scream and loud cry that we even have difficulties with.
(3) Reilly has limited capabilities – very few opportunities that she would find enjoyable, even going to the park is difficult. Also difficult to play outside in the backyard or go for a walk down the street.
(4) Difficult for both parents to work but it is challenging to live only one salary with all the extra expenses.
Further notes made at the time:
- a characteristic of Rett Syndrome is that the girls have small hands and feet but I wrote above not Reilly. At 3.5 years of age Reilly was above average on all growth chart markers but this is definitely proving true right now at 7.5 years of age. This is the 3rd season we are getting out of her winter boots (size 11).
- Repetitive hand movements – Reilly did some small hand wringing movements between the ages of 1-2 years of age. Full fledge hand wringing started at 27 months, with the addition of hand mouthing at 23 months. She still hand wrings constantly right now.
- Some girls had a few words up to 2 years of age and then lost communication abilities. Reilly never spoke. She babbled a bit around 8-10 months but I never did hear ‘mama’.
- Originally thought Reilly had Autism because of the general developmental delay features, sensory issues, and repetitive play habits, along with an intense interest in lights (still to this day she loves looking up at lights and loves spinning toys – the one thing remaining she can do)
- Reilly did not walk until she was 2 years old (taking first independent steps). She currently has huge walking issues and rarely can walk alone these days.
- Reilly developed normally until 6 months of age in my opinion and then from there the flags started to emerge.
- Breath holds at night
Note: The picture is actually of Reilly at 4 years old. I dropped our external hard drive on the floor and it was deemed not repairable, so I lost all the family pictures from 2008 😦