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.




Thursday, February 24, 2011

Professional Patients

While many parents worry about the effects of too much TV on their children, or how cell phones and social networking may occupy too much of their kid's time....I, on the other hand, have a different problem.

My kids spend too much time in doctor's offices.


At their young ages of 11 and 9, my sons have become professional patients.

Nicholas was diagnosed at birth with Prader Willi Syndrome. Before we left the hospital together, we were given a long list of upcoming appointments with doctors and specialists. So began our "healthcare" lifestyle of visiting a variety of physicians every four to six months.

He is followed by:
Endocrinology
Neurology
Gastroenterology
Opthamology
Orthopedics
Urology
Hematology
Nutritionist
ENT
Cardiology
Orthotist
Pediatric Dental Specialist

Add to that: yearly physicals, flu shots, and sick visits, not to mention, hospital stays, EKG's and long term EEG's.....and you understand our predicament.

NOW...add to this the list of Weston specialists:

Psychiatrist
Psychologist
Orthodontist
Neuropsychologists

And of course my Mom, who sees:

Pain Management Clinic
Psychiatrist
Endocrinologist
Nephrology
Primary Care
Hematology

It is not too difficult to see, where my children and I spend most of our time.

I must admit, my children are becoming very good at epitomizing "perfect patients". Armed with cases of matchbox cars and backpacks stuffed with toys, my kids are prepared to wait. I, of course carry the necessary food items, handy wipes and antibacterial soap.

We arrive in the waiting room where I check-in and the boys quickly claim a section of floor area in the waiting room, usually by the window. They quickly note the location of the nearest bathroom. They scan the usual array of lame waiting room toys: blocks, puzzles and the occasional musical toy with batteries that stopped working ten years ago. It isn't long before they tire of the overused and under-supplied toy content. But they are no amateurs, having anticipated this scenario, they occupy their time with toys they have brought from home.

As we transfer into the exam room area, Weston grabs a seat near the window and pulls a construction vehicle out of his pocket, he hums quietly to himself as he moves the vehicle precariously along the edge of the window sill. Nicholas carries his latest Dora backpack, finds an empty seat and occupies his time by zipping and unzipping the various compartments of his favorite carrying device.

It isn't long before one or both of my children need to go to the bathroom. Having located it upon arrival, they know exactly where they need to go. I pray that Nicholas does not need my help.

When they return from the bathroom, the doctor is usually present. The exam and follow up questions are tolerated half-heartedly by the boys. After a few, "Are you done yets?" from the now impatient children, followed immediately by glaring looks from me, we finish up with the latest specialist of the day.


Before we leave the doctor's office,  I smother all of our hands with antibacterial soap.


As we head out of the office, I check out with the receptionist who hands me a card that tells me........of course.........when we need to return!


I have millions of these......

I am hoping that all of this exposure to the health care field will have a positive effect on my children. Perhaps they too will become healers of some kind, helping others and caring for people? Or maybe they will be the first to design cool waiting room toys or "mommy-less" bathrooms with toilets that flush quietly for a change! Whatever they become, I do hope they look back upon these times with happiness and a good memory or two of the many doctor visits we spent together.