Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Tuesday, July 26, 2011

The Appointment Maker

When you are the parent of a son with special needs, much of your time is spent taking your child to visit with specialists. For us, we see: Neurologists, Orthopedists, Gastroenterologists, Geneticists, Endocrinologists, Nutritionists, Opthamologists, Cardiologists, ENT's, Urologists, not to mention the pediatrician, the dentist, the orthodontist and a stray visit here and there to Children's Hospital. Most of these professional individuals we see every 4 to 6 months.

The good news is that after all these appointments, for all these years, we have begun to develop some very good relationships with these physicians. Some of them, I actually consider friends. The bad news is...I find myself on the phone.....a lot. I schedule and reschedule appointments and if I am not careful, pretty soon my schedule is running me.

After nine years of running around like a mad woman from one specialist to another, I am finally starting to learn that I need to actually schedule some down time for me and my children. If I do not make a concerted effort to do this, our schedule can start to look like this.


And pretty soon, we all start to get very grouchy and very sick..... needing of course,  more appointments and the vicious cycle starts all over again.



Today, Nicholas has started to get sick. He developed this real croupy cough over night, and spent most of the day camped out on the couch. Of course, this unscheduled interruption in our airtight schedule meant alot of rearranging and a lot of time for me on the phone......once again.

Help! My ear is starting to hurt!