Parent Tips

My daughter, Claire, has Phelan-McDermid Syndrome, but was diagnosed with atypical Rett Syndrome until she was 30. The tips listed in this section have worked for us and for Claire, and may not be appropriate for your child. You know your child best, so don't try any of these ideas unless you're comfortable with them. It's always best to consult with your child's doctors and therapists if you have any questions.

One note of explanation: Claire is able to walk and run. Many of the challenges we face are related to the fact that she is ambulatory, so many of the ideas listed here reflect this.

Acknowledgements: Over the years, I have picked up many tips from Rett Syndrome newsletters, conferences, therapists, doctors and other parents. Some of these tips we figured out of our own, but many were from others. Our deepest thanks to everyone who has helped us.

Click any of the Tips links above to start reading tips, or click here to start.