- Rubinstein-Taybi Syndrome
- Interviews
Andrea's interview
How did all start?
It all started the day my son was born.
Do you already have a diagnosis? How long did it take you to get it?
Yes. 18 years
For what medical specialties have you been treated? What has been the most useful specialty for your?
ENT, orthopedics, cardiology, psychiatry, ophthalmology, OT, PT, Neurology
Neurology has probably been the most useful along with orthopedics
What has been the most useful thing for you so far?
It all works together. Behavior intervention has probably been the most useful.
What have been your biggest difficulties?
Education has been particularly difficult.
How has your social and family environment reacted? Have your social or family relationships changed?
Overall very accepting but not super helpful
Many social and family situations or functions my son is not able to attend because of behavior.
What things have you stopped doing?
Nothing.
What do you think about the future?
I will always worry about my son living in residential care facilities but I am not able to care for him properly at home.
So far, which years have been the best years in your life? What have you done during them?
The best years were when he was a toddler and a young child. He could go everywhere and he was interested in so many things. His behavior was easier to manage.
What would you like to do if you didn’t have your condition?
I would like my son to live a full and happy life
If you had to describe your life in a sentence, what would it be?
Always conflicted about whether I am doing the right or best thing for my son.
Finally, what advice would you give to a person in a similar situation?
Seek support always and take care of yourself. Don’t put limitations on yourself or your loved one. Let them show you what they can or can’t do.
