Rett Syndrome Information That Your Mother and Father Didn't Tell You About
(Okay, Sharren, my wife didn't get the joke in the title. I am still not changing it unless somebody out there can get me something better. The title is derived from "Things Your Mother and Father Didn't Tell You About (fill in whatever they didn't tell you about but you wish they did).
Rett girls get constipation. It is a good thing that Arianna likes apples and fruit. Sometimes it takes a lot of fruit to get her going.
Rett girls, even high functioning girls that can walk, can be dead weight. Make sure that you are in good condition or have a lift or a partner if you need to move your daughter.
Rett girls are great flirts. I have not met a girl yet who does not manage to flirt somehow with guys. They make great eye contact and they have smiles that can melt an iceberg (okay, I know that it is a cliche but it is true).
Have any Rett information that Mom or Dad didn't tell you about that you want me to post? Send me an email and you will get your name (if you request it) posted. Email address is on the previous page. Send the email with the title: Rett Info Mom and Dad Didn't Tell Me About..
SPECIAL NEEDS PARENTS DON'T EAT BABIES
Parents of children who have Rett Syndrome, Cerebral Palsy, Down Syndrome, Multiple Sclerosis, Tourette's Syndrome, Muscular Dystrophy, Autism and other disabilities are human beings and not monsters.
In this day and age, as the advertising media places more and more of a premium on youth and beauty, people tend to treat special needs individuals, their disabilities and caregivers as if they have the bubonic plague or bird flu.
Yes, we or our family members may need help with simple tasks as well as more complicated ones but we don't have anythiung contagious. Our skins are pretty thick at this point and we'd prefer direct questions if you want information from us.
Special needs discrimination may be down but there is still a subtle bias against people with disabilities and their caregivers. We are usually the first group of people to understand and be sympathetic to human suffering. We are also the first to develop a sense of humor about things.
Unlike cooties, genetics isn't catching if you shake our hands. We promise we won't turn you into a baby eater, though I have been told that I have cooties.
Note for the literal minded: I was only kidding about that last sentence - the cooties part, not the baby eating part...
One of the best presents you can give Rett Syndrome parents is to offer to watch the kids so they can go out! Just a tip for friends and relatives who want to do something to help!
Kim Greenblatt Publishing - where portions of all sales go to Rett Syndrome research!