Fragile X and discipline

mrsd0907

Hi everyone. I post mainly on my local board but my son was diagnosed with Fragile X about a year ago and I was directed by a friend to seek out this board for advice. We've sought out speech therapy and will be starting occupational therapy soon. Right now we're battling the terrible two's and discipline. A weak gag reflex is common with FX and it seems like anytime DS gets very upset, he works himself up and vomits. This is where I feel like we're failing. We haven't found a good way to calm him and keep him from vomiting. The only foolproof way to calm him is to distract him with thomas the tank engine on tv and hold him. Nothing else that used to calm him works anymore. I don't know how to discipline him without him vomiting every time we put him in time out or tell him no for doing something wrong.

Does anyone else have issues like this? I'm open to any suggestions as I feel like we're grasping at straws trying to find something to help. Thanks.

SallyNada

If you can I recommend that you join a couple of online support groups specific to FX.

Fraxa Research Foundation has an email support group (listserv) with approximately 700 members from around the world.  Details on joining is available at: https://www.fraxa.org/joinourlistserve.aspx

If you are a Facebook user you might want to try the group the "Fragile X Files".

When it comes to behavior and fragile X, I really recommend reading the articles from Dr. Marcia Braden, on her resources page at:

 https://marciabraden.com/?page_id=104

I also recommend the Coffee Talk columns from DevelopmentalFX:

https://www.developmentalfx.org/2nd-CupCoffee.html

To help you better determine the function behind his behavior and the best responses, I really recommend that you create a behavior log, for about 3 weeks just gather data, date/time and comments, comments are most important because you need to describe the behavior, what went on before, during and after, what discipline measure did you use and what were the results.  When I did this early on with my son the surprising discovery was how much I used the word "no" when I could have used redirection or a more positive reinforcement.  When you gather data in the first three weeks don't try to analyze it right away.  Just gather and then take a long hard look at what you have.  For some children with fragile X anxiety can be crippling and that might be what you are seeing, if you have the opportunity to visit a fragile X clinic I hope you do, Not sure if you are in the states but if you are you can find clinics here: https://www.fragilex.org/community/links-support-network-fragile-x-clinics/

hugs, Sally