I am officially the mom of a child with special needs. This may not be a news flash for any of you – and it really isn't breaking news for me either. Today, though, was the first day that I felt like a mom of a child with special needs.
Chance and I were super excited for Nasko's opthamologist appointment. We were hoping to gain some insight into the treatment for Nasko's left eye. That eye sometimes turns inward and looks in a different direction from his right.
The appointment was at 2:45, but we were told to come 10-15 minutes early in order to fill out paperwork. I had Nasko take an early nap so that he would be in a good mood for the afternoon.
We've had some REALLY great days this week. Nasko has made so much progress and is showing signs that he can calm down and interact appropriately.
I knew the early nap would be needed though, and he took it willingly.
We arrived at the appointment on time and filled out the three minutes worth of paperwork. The facility of the Gailey Eye Clinic is very nice. VERY nice. Like glass-things-hanging-at-child-height kind of nice. Who designed this place?!
Nasko was really good, but our wait seemed to drag on and on.
After waiting for an entire hour, Nasko (not to mention Mama or Taty) was getting antsy. He had already run up to an unsuspecting African-American woman in order to touch her curly hair. But then, we were called into an exam room by a nurse. I was excited when they called his name! Yay!
The nurse attempted (and failed) at using a matching game with Nasko. Then she sent us back to the waiting room.
And we sat again...
This time, Nasko decided he was going to attempt to gain a job as a receptionist at this place (because obviously they are having trouble scheduling appointments in a timely fashion) and he ran behind the desk to sit in one of the office chairs.
So, we redirected him (again and again) for another forty-five minutes. One hour and forty-five minutes after arriving for our appointment, we were called to an examining room to wait for the doctor. After I asked, the nurse divugled that Dr. Kinup was next door, and we were his next patient. Yay!
As soon as Dr. Kinup walked in the room, I knew this wasn't going to go well. Chance had taken a work phone call (since he had been away from his office all afternoon), but quickly signed off since the doctor had (finally) arrived. Dr. K was obviously very irritated that Chance had been on the phone.
He shook C and I's hands, but didn't acknowledge Nasko at all. He started shining lights and other things into Nasko's eyes, without introducing him to these new tools or even attempting to explain what he was doing.
At one point, the doctor held up two fingers and said, "Nasko, how many fingers?" I replied with, "Nasko does not speak English (you numbskull)."
Then the doctor said, "And you can't speak his language?!"
"Uh. No. We're working on communicating. He hasn't even been home for three weeks."
The doctor gave up on the finger exercise and retried the matching game that the nurse had done. This time with letters of the alphabet instead of shapes. Like that was going to make the game just CLICK for Nasko...
The doctor then pulled out a couple of small stuffed toys (that looked like a dog had chewed them). He wanted Nasko to grab at them. I demonstrated and Nasko followed suit.
Again, without any attempt at explaining what he was doing, the doctor moved to the next activity. He used a light by his lap to look up into Nasko's eyes. Nasko of course just wanted to look at the light. So, clever Dr. Kinup clipped his ID badge to the bridge of his glasses in order to direct Nasko's sight.
So, my glasses-loving, overstimulated, nervous thief, ripped Dr. Kinup's glasses and ID badge off of his face.
Dr. Kinup was MAD. He instantly jumped back (as Chance and I apologized) and said he was done. He'd like to schedule another appointment, "but not for another six weeks."
Because obviously Nasko will be perfect in six weeks...
By this point, I was also MAD. You don't force my child to sit perfectly still for almost two hours and then lunge at him with unknown objects in a dark room, all while expecting perfect behavior.
As a mom of a child with special needs, and one of the only advocates for my child who cannot currently share his thoughts or feelings, I got my boxing gloves on as Dr. Kinup walked out the exam room door.
If I'd have been quicker, I'd have pulled them out on him. I could have taken him...
I asked his nurse if there was a time of day when our wait period would be shorter.
She replied that "they could not guarantee wait times."
I told her that I understood that policy, but one hour and forty-five minutes was ridiculous for anyone - let alone my child with special needs.
She had the audacity to tell me that our wait time wasn't too bad. It was about average. It "wasn't the doctor's fault either. There were three emergencies that day."
Now, I schedule appointments similar to a doctor for my job. Every child gets an hour, plus any travel time in between. I have emergencies come up (medically involved children have severe complications, foster parents have children taken away, etc.) I have never once been one hour and forty-five minutes for an appointment though.
Or spent only five minutes with the client because I didn't like their behavior.
When I went to speak with Dr. Kinup's receptionist to make our next appointment, I told her I wanted his first appointment of the day in order to avoid such a long wait. She said that our wait time wasn't too bad, and possibly wouldn't be shorter even as the first patients of the day.
I almost choked the woman. It would have been hard since I was still wearing boxing gloves, but I could have made it happen.
I quickly made an appointment, but had dialed our pediatrician's office before leaving Dr. Kinup's parking lot.
Don't worry, we're going to be referred to St. Louis Children's Hospital.
As a mom of a child with special needs, I could not stand by and continue supporting a doctor who did not even attempt to understand my family's needs. I will not sit through another appointment knowing that he won't even acknowledge my son as a human being. I will not subject my child to someone who has so little patience that one wrong move wastes an entire afternoon.
I am officially the mom of a child with special needs.
I am a fighter.